Bells Palsy / Lyme Disease

PLEASE SIGN THE PETITION TO REMOVE THE IDSA GUIDELINES FROM THE NGC!

2012-01-26T17:14:00.000-08:00

Please sign this petition.It is so important to millions of people suffering from chronic Lyme disease and their caregivers.

Most doctors have to adhere to IDSA guidelines in fear of the possibility of loosing their license US & Canada (not so much in CA)

Insurance companies do not have to pay much if anything due to the fact that they are only suggested guidelines - leaving the patient with only enough treatment if any to make their condition chronic.

Since some insurance companies pay only a small portion or treatment the out of pocket expense to the patient is enormous. Length of time to Diagnosis Average cost
Less than 6 months $ 34,000
7-12 months $ 68,000
More than 12 months $ 92,000

Most people have no idea that they even have the disease until they are in the late stages of Lyme. It is an average of 7 doctors and 21 months before it is even suspected. I my case it was 1 1/2 years even though I suspected it and requested testing - but they doctors thought it's not here in CA or West Marin. Leaving me to get sicker and sicker and the final cost over $ 150, 000

There are different rules of thought of how to approach treatment, it is extremely difficult to find which one is going to work the best for each patient it really pretty much depends on how long it has gone undiagnosed - the long the time, the longer the treatment

Sometimes I think they just through the tick away - I know out here they don't even send the tick in any longer since they think that it is rare to get it.

I met a nurse practitioner out here and of coarse I had to bring it up as to why they don’t investigate it when a person some symptoms - her response was that they are told that they do not have the nor money to deal with it - needless to say - I was not impressed and I will just leave it there.

One thing that happens by the time you come down with any of the symptoms you may not even remembered that you were bitten – and the sequence of symptoms can happen in such a way that you would not put the two together. Sign the Petition

Yes - there is Lyme in California

2012-01-26T17:11:00.000-08:00

PLACER COUNTY (CBS13) – Placer County health officials are warning residents to be cautious after several ticks have tested positive for Lyme Disease in the county.

Health officials say eight tick samples have tested positive for the disease which can cause fever, headache, fatigue and a rash. If left untreated, Lyme disease can affect the joints, hearts and nervous system. Although most people associate tick and Lyme disease with summer months, there has been a population increase since the late fall in Placer County.

“We are concerned that with the milder winter we have been experiencing, a lot of folks will be taking the opportunity to engage in outdoor activities, such as hiking in tick habitat, and potentially putting themselves at risk for tick-borne disease,” said Joel Buettner, General Manager of the Placer Mosquito and Vector Control District.

The District advises residents who may be working or recreating in tick habitat to exercise caution and implement the following tick-borne prevention strategies:
• Wear long pants and long-sleeved shirts. Tuck pant legs into boots or socks and tuck shirts into pants.
• Wear light-colored clothing so ticks can be easily seen.
• Apply a repellent, such as DEET, registered for use against ticks. Always follow directions on the container and be careful when applying to children. Before entering tick habitat, permethrin spray may be applied to clothing to kill ticks.
• Stay in the middle of the trail. Avoid trail margins, brush and grassy areas.
• Inspect yourself frequently for ticks while in tick habitats. Once out of tick habitat, thoroughly check your entire body for ticks up to three days after being in tick areas. Parents should examine their children, especially on the scalp, hairline and skin folds.

For more information on ticks in Placer County, contact the Placer Mosquito and Vector Control District at (888) 768-2343 or visit www.placermosquito.org. View Article

2012 Update

2012-01-26T07:06:00.000-08:00

To be honest with you - it was an incredible battle to get where I am now.

I approached it as war and not to let up, I thought I would never recover and that it was the end of my world, my life and career. My decision was to go after this full throttle and made the decision that nothing will have the best of me. When possible I was teaching even with a pic-line due to how expensive the treatment is for this disease.

I am in remission - but it is always on my mind and very aware, I don't forget where I have been and hope to share the journey with others in hopes that it can help just one other person. There were times where I thought -God- if I was in a accident or some other event, I just didn't have the energy to pull through it, the fighting takes it's toll. I have always tried to stay positive laughing at the craziness, and the difficulty (still lots and lots of tears and how hard ridiculously hard the fight is to get the right treatment, I even the lab tech that had me in tears because she thought the testing I was having was not necessary - you know what, that is not her job and she was only a tech not a doctor.)

If possible you truly need an advocate but someone that truly understands the disease but how do you find one - so in reality your have to find own way through and it is not easy.

I came to a point where I thought I am done with this disease and "I am not my disease" and not to fall into the victim role which is easy to do after fighting for so long and so hard it has been almost 2 years now and I am doing great, I am making plans for the future and making commitments years in advance and have decided if I end up wit any problems I will deal with the then and not to live in fear.

So many people are afraid to say that they have this disease I am not sure what anyone is afraid about - being labeled what? and I think that is part of the problem because many people still think it is only an east coast problem.

Symptoms - You name it I had it, along with the co-infection of babesia I could have easily listened to the main stream doctors and turned my life over to them and if I did I would not be where I am now.

As far as my Bells Palsy it's going on 5 years years I still try to isolate my muscles and work with the occasionally - it's about 95% better if you didn't know me you would think that is what I always looked like - but alas it is not, I feel fortunate to have what I have and it is pretty darn good. Remember if you are only consider about your face there is always someone else that has it worse.

Nothing about this disease is easy. I wish you all the best and I am here

Some of the physiological affects of Lyme

2011-10-07T07:45:00.000-07:00

Here are only a few ways that Lyme can affect the brain and physiologically diminish a person abilities.

Extreme Irritability and/or Emotional Lability
Many patients reported mood and behavioral changes during the course of their illness. In our sample, 64% of patients reported increased irritability and/or emotional lability in association with symptoms suggestive of meningeal irritation: neck stiffness and headache. The mood and behavior changes are often so severe and pervasive as to constitute a personality change. Sudden, intense irritability is most often triggered by sensory stimulation in patients who are acutely sensitive to sound, touch or light but may also occur unprovoked and seemingly inexplicably. One man, acutely sensitive to sound, was so intensely bothered by the noise his three-year-old son was making that he picked him up and shook him in a sudden and unprecedented fit of violence. His wife was shocked and alarmed by this behavior, as was the patient himself. A woman, typically reserved and eager to please, became uncontrollably irritable one day at work and found herself yelling at her boss in a most uncharacteristic fashion. Others have found themselves bursting into tears, sometimes several times a day, on what seems like very little provocation.

Word Reversals When Speaking and/or Letter Reversals When Writing
These odd, idiosyncratic but quite common symptoms were reported in 69% of our sample. Patients with no prior history of dyslexia have found themselves writing letters backwards, reversing numbers or routinely reversing the first and second letters of a word. One patient recalls also switching her shoes: putting the left shoe on the right foot and the right shoe on the left foot before she realized her mistake. This patient also experienced what might be understood as reversals in temporal sequencing: for instance, saying the word "tomorrow" when she meant "yesterday" and vice versa.

Spatial Disorientation
Reported in 57% of our sample. A not uncommon scenario is of a patient who, recalling no rash or flu-like symptoms, had experienced some aches and pains and/or memory problems but had not paid much attention to these symptoms until he found himself, on two consecutive days, lost in his own neighborhood, on his way home from work. Such a scenario suggests a disorder of topographic orientation and geographic memory such as may be seen among patients with parietal lobe dysfunction (45). Patients have reported other behaviors as well which seem to relate to disturbances of the body-environmental schemata. A young woman described repeatedly bumping into things on the left side of her body, dropping things from her left hand despite having no weakness in that hand and occasionally placing objects, such as a milk carton, several inches short of a table edge with the result that they would fall to the floor. These difficulties remitted completely following adequate antibiotic treatment.

Fluctuations in Symptoms
This can be one of the most frustrating and perplexing aspects of the illness. A patient with late-stage Lyme disease might feel totally drained one day, the next day be able to function almost normally and the day after experience such mental confusion as to be unable to focus on even the simplest of tasks. Sometimes the fluctuations may be brought on by exertion or stress or exposure to sensory stimuli or by the initiation of antibiotic treatment, but sometimes no explanation can be found. The fluctuations make it impossible for patients to make plans, and may make it seem to friends, teachers, family members or even the patients themselves as if the symptoms were somehow under voluntary control or as if they were hysterical in origin. Of course psychological factors, too, can influence symptomatology, but fluctuations are typical regardless of mental state.

Such vicissitudes raise a particular problem in children who may experience fluctuating cognitive impairments: short-term memory problems, word-finding difficulties, dyslexia, problems with calculations or inability to concentrate. School systems are by and large unaware of the cognitive aspects of late-stage Lyme disease and, in particular, of the ways in which cognitive impairments may fluctuate from day to day in a given child. Teachers may assume the child is just moody or uncooperative. Family dynamics, too, may be complicated by confused expectations of the sick member, and resentments may build when a person's functional status, mood and ability to participate in family life seem inexplicably erratic. Patients and family members alike find it difficult to have their hopes raised repeatedly by a transient clinical improvement, only to be slapped down again by a recrudescence of debilitating symptoms. Even with treatment, recovery from late-stage Lyme disease is most often a lengthy process involving significant fluctuations in symptoms even in the context of overall improvement.

Worsening of Symptoms During Antibiotic Treatment
Nearly half of the patients in our sample reported a transient worsening of neuropsychiatric symptoms during the first few days of antibiotic treatment. The worsening of symptoms during initiation of antibiotic treatment is thought to be a variant of the Herxheimer reaction as seen in the treatment of syphilis (33). In Lyme disease, however, this Herxheimer-like reaction can be quite prolonged-lasting a few days or longer-and can be frightening to patients who are expecting a resolution, not a worsening, of their symptoms. The reaction can sometimes be difficult to distinguish from an allergic reaction to the medicine, a distinction with obvious and crucial treatment implications.
This Herxheimer-like reaction may be experienced as a worsening of psychiatric symptoms: some patients in our sample experienced panic attacks for the first and only time when starting on antibiotics. Others have reported an intensification of depressive symptoms, suicidality or anxiety. Many reported an increased startle response and photophobia during the first few days of antibiotic treatment.

For more information on this article visit the Canadian Lyme Foundation

Books I like

2011-07-30T07:22:00.001-07:00

I am often asked what books I have read about Lyme or found helpful. Here are some of my favorites.Insights in Lyme Disease Treatment 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies by Connie Strasheim, Maureen Mcshane M.D. and Thirteen Lyme-Literate Doctors

Cure Unkknown Inside the Lyme Epidemic by Pamela Weintraub

Beating Lyme Understanding and Treating This Complex and Often Misdiagnosed Disease

Everything you need to know about Lyme Disease and other tick Bourne Diseases

Hyperthyroid / Graves disease

2011-07-09T22:19:00.001-07:00

I was just thinking this evening how little I have spoken about Hyperthyroidism / Graves disease. This too was a symptom of Lyme. It is more common to have a Hypothyroid but either way your thyroid can be affected. I had the typical symptoms
Palpitations
Heat intolerance
Nervousness
Insomnia
Breathlessness
Fatigue
Fast heart rate
Trembling hands
Weight loss
Muscle weakness
Warm moist skin
Hair loss
..then when I went to the doctor her first response was that I should have my thyroid killed - which is permanent. I remembered what my cousin once said to me (who also had a thyroid problem -don't ever let them kill your thyroid if you can help it- since it was so difficult for them to regulate her and she still has problems) in any case I said no I wanted to try the medication first. In many cases a Hyperthyroid can go into remission and that is exactly what mine did. I was on the lowest dose possible and within a matter of weeks it was normal. They kept me on Tapozole for quite awhile even though I didn't think I needed it any longer but they wanted to be sure.

Before I tested positive for Lyme I remember speaking to Dr. Harris and asking him if my Hyperthyroid could be a symptom of Lyme and his response was that Lyme systematically goes through your body effecting your immune system and turning things off and saw no reason why it couldn't.

"This usually starts with the adrenal glands. No, I don't mean the thyroid, I mean the ADRENALS. Many physicians and patients start on the wrong end of things by first giving the body thyroid hormone, but this isn't usually how it should be done.

Why? In Lyme disease and chronic illness, the thyroid often malfunctions as a result of the adrenal glands, which are pooped from having to deal with so many bugs, toxins and stress. Treating the thyroid first puts greater stress on the adrenal glands, which then exacerbates the whole endocrine problem. Not treating the thyroid, however, can also stress the adrenals, but if you sense you have adrenal fatigue, it's best to deal with this problem first. "

Click here for more information

What were my Symptoms

2011-06-16T06:20:00.000-07:00

I was asked this morning what were my symptoms and how could I tell the difference between Lyme or Bells palsy. For one I had no idea it was Lyme everyone said that I would probably recover quickly maybe a week or two a couple months at most. But I knew this was something different. The sever exhaustion, pain in the back of my head, I couldn't see well out of the affected eye. I wasn't able to drive I didn't have the energy. I felt like someone had sprinkled some kind of germ warfare all over my body. I felt like I couldn't complete a sentence and couldn't multi task along with slurring my words....anyway these were some of the symptoms that lead up to my Bells Palsy and after.

These were my main symptoms
Headache, migraine
Pressure in the head
Tingling of nose, cheek, face
Twitching of facial or other muscles (motor tics)
Jaw pain or stiffness (TMJ-like problems)
Sore throat, swollen glands
Increase in allergy symptoms
Unexplained hair loss
Pain in ears
Ringing, buzzing, tinnitus
Oversensitivity to sounds
Upset stomach (nausea, vomiting, pain)
Bone pain, joint pain, joint swelling, or stiffness
Shifting joint pains
Drooping shoulders
Shortness of breath, can't get full/satisfying breath
Diminished exercise tolerance
Burning or stabbing sensations in the body
Numbness, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Light-headedness, wooziness, brain fog, fainting
Felt like I had Meningitis (inflammation of the protective membrane around the brain)
I had a lot of these
Forgetfulness, memory loss (short or long term)
Confusion, difficulty in thinking
Difficulty with concentration, reading, or spelling
Word retrieval problems (can't remember words, stop at mid-sentence)
Dyslexia-type reversals, difficulty with writing
Problems with numbers
Difficulty with speech (slowed, slurred or stammering)
Forgetting how to perform simple task
Attention deficit problems, distractibility
Difficulty with organization and planning
Difficulty with multitasking
Slowed speed of processing
Extreme fatigue, tiredness, exhaustion, poor stamina (Chronic Fatigue Syndrome)
Swollen glands, swollen/painful lymph nodes
For a full list please visit my Lyme symptoms link
http://bellspalsylymesdisease.blogspot.com/2009/04/lyme-symptoms.html

Ticks, Lyme disease creeping northward

2011-06-16T05:58:00.000-07:00

From Maine: “When the ground is dry, ticks just kind of hunker down under the leaves...but after a heavy rain, they’ll be out like gangbusters.

The recent cycle of chilly, rainy weather may be discouraging for sun-starved Mainers, but deer ticks, those minute carriers of the organism that causes Lyme disease, are liking it just fine.

“When the ground is dry, they just kind of hunker down under the leaves and they don’t come out until it rains again,” said Chuck Lubelczyk, a field biologist with the vector-borne disease lab at the Maine Medical Center Research Institute in South Portland.

Scientists searching for deer ticks to study often strike out when conditions are dry.

“But if we go looking after a heavy rain, they’ll be out like gangbusters,” he said.

Scientists aside, cool, damp weather for deer ticks is not high on most people’s summer wish list. It’s not just because all ticks are creepy little arachnids that bite a hole in the flesh of their host, inject an anticoagulant to keep the blood flowing, and then latch on until they are bloated and engorged.

” View Article

How to remove a tick

2011-06-16T05:56:00.000-07:00

http://www.youtube.com/watch?v=0wotB38WrRY&feature=player_embedded#at=12

This Wet Spring means a High TICK season

2011-05-10T07:24:00.000-07:00

Insight into our Local Medical Facilities

2011-03-26T23:06:00.000-07:00

I just got some interesting insight into our local medical facilities about Lyme the other day. I was talking to a nurse practitioner and asked - why do the practitioners around here dismiss Lyme so easily when it is obvious that it's here. She said that's because it is not within their standard guidelines and they are told to not even go there. I said are you kidding me?

So people are left not having a clue what may be going on with them? She said people need to see a special doctor and we don't have the time for that. I said but you don't even offer that information. It can easily be treated if you catch it early enough and I know many local people that this has happened to and without early diagnosis treatment can run into the thousands of $$. - just unbelievable.

It doesn't matter where you live, if this is the general view and opinion of most clinics or doctors you need to be aware -because they are not going to be that helpful in most cases to a diagnosis or give you the treatment that you need, you really need to be vigilant.

I don't even want to imagine where I would be right now if I didn't get treatment. It was systematically going through my body affecting face with Bells Palsy, my thyroid, etc. not to mention the shear exhaustion and not being able to think, slurring words and not being able to complete a sentence and thinking that I had Meningitis.

A friend of mine just told me that a local doctor told her last year that some locals are "GRAND-STANDING" - totally dismissing the validity of Lyme in our community! (looks like that would be be)

I would be happy to say I will and am taking a stand and it will be GRAND !!! to help educate people about Lyme ... I can't tell you how many of my students after hearing my story have found out that they or a loved one has Lyme. I just wish instead of dismissing it they would consider the possibility. just nuts!!

Letter from Canada
I got told by my family doctor it was a very rare disease here in Canada. She hadn't seen a case before!!! I asked her if she had ever tested anyone for it... I expect you can guess the answer :( There are so very few doctors here who will treat it. Those that do get into all sorts of trouble. One doctor in the GTA has been told in no uncertain terms if he treats anyone else for lyme with anti'b's for more than 2 months he will be struck off as this is not standard practice. How do you fight the system to get the treatment you need?

My response
That has happened to many doctors especially on the East Coast. Treatment and doctors almost seems to be underground due to the standard guidelines. It has a lot to do with politics, insurance companies etc. a good movie to understand why it is that way is to watch the movie Under Our Skin

When I finally got the right test, I asked the lab director how do I find a doctor that knows what he's doing, his response was. Find one that treats well beyond standard treatment guidelines and uses integrative medicine....I could have cared less..I thought it would be a quick fix a couple of months at the most. Only to find out that I wasn't any better a couple of months into treatment and if I would have stopped - I would have still been dreadfully ill. It took 1 1/2 year of oral antibiotics and 6 months of a pic line - it took a total of 3 years to really get my energy back and I still worry about it sometimes. My body has now finally recognized that I have a problem and I do all I can to support my immune system as much as possible to be able to fight this thing.

Bells Palsy and what I did

2011-03-21T16:18:00.000-07:00

Well they said I would never recover I haven't fully but it is much better than it was. my face was a mix between flaccid and a Hemi facial spasm so it looked a little swollen in my cheek, my eye was wide open as many peoples are then for awhile it seemed that it was going to be normal size then it started to get smaller than my good side.All of my nerves in my face seemed to be attached to my eye. meaning when I made any movement with my mouth my eye would try to close.

Nerves
The nerves in my neck, face and head were all attached to my shoulder, so everything went into pain at the same time. It seemed that most practitioners did not know what to do to help so I have spent a lot of time and money trying to relax all of those facial muscles, nerves and adhesion's, (it would be similar to someone that has a knot in their back and having a message to try to release it).

This is what I did.
I first started with straight acupuncture about a week after the BP first hit. I could I see out of my affected eye nor did have the energy to go anywhere (due to the Lyme-which I didn't know at the time. I simply could not function).

After three months my neurologist said I would never improve, I told her that I had just started to get back the tinniest movement, and that I actually made a tear after watching a touching movie of animals - that was a HUGE deal - I made I tear ! I was SO EXCITED - the tinniest thing was such a big deal.

It was not until I asked for electrical stimulation on the needles that it seemed to make the a slight movement in my upper lip (and this was three months after the initial damage). That was when I realized that I could not believe everything the doctor said.

I told the doctor about the electrical stimulation that I was doing and how I thought that this was the only thing that made any difference. She then prescribed Physical therapy - with stronger electrical stimulation which may have been a little too strong. I feel as people with BP we need to be careful that we don't over do it because then it seems in can go in the opposite direction and then turn into a jokers smile so pace it, meaning hit it hard, then give it a break, then over again.

I might have done more of the electrical stimulation but I was also dealing with the Lyme / Babesia and could not afford the Lyme treatment and treatment on my face at the same time. It was not until I was officially in remission that could I then turn my attention back over to my face.

Osteopath
About 3 1/2 years later I then started to see an osteopath. (I tried one before without much success she really didn't do much and I noticed no difference). This time this doctor was not gentle and found out that I had NO IDEA how much pain I still had in my face until he touched certain areas of my jaw, inside my mouth, touched parts of my face by my brow and nose and by my ear. I was in agony, wanted to cry, I wanted him to stop but just let him do what he needed to. (It was funny how I looked forward to my appointments with him where I knew that i was going to be in pain) but I think what kept me going was intuition and the realization and shock that my face still was in pain.

Electrical Stimulation
I would see him once a month then after a month or two the pain subsided, it started to feel sort of like the other side and people started to notice that I had more symmetry. I was please that people that hadn't seen me in a few months could actually notice a difference and that my face didn't feel as pulled anymore. So I feel what the doctor was able to do was to take the areas that were frozen and now have those channels open up for stimulation.

I then started Macro Electrical Stimulation ...apparently a very old technique with electrical currents that are compatible with your body it's not noticeable, only if it touches dry skin, then it is a slight zap. What they do is place a wet towel over the area that they want to treat then apply the current. The current is focused in these areas but runs through your body...the current it is very very slight and as I said not noticeable.

I'm coming up to 4 years on May 4, I'm happy to be where I'm at, have quite a bit of energy (which is huge) I am now able to exercise, trying Zumba (1-3 times a week, and am actually sweating (something I don't usually do) and when I do I think of all of those little creatures (Lyme) and how I am making an an environment that is hostel to them. Exercise, sweating, breathing and attitude.

Welcome to Spring

2011-03-13T07:43:00.000-07:00

Bells Palsy Update - it will be 4 years in May

2011-03-09T15:31:00.000-08:00

I am really happy to have to have as much of my face back as I do,they said I would never recover.I still try not to smile too big when taking photos, because when I do my face is still a little cock-eyed.

The doctors wanted to put a gold weight into my eye-lid, but I thought - they just don't know me very well and I did not accept their opinion. I did go through a lot of acupuncture with electrical stimulation, PT with electrical stimulation and macro electrical stimulation. I have also been seeing an osteopath (something I never believed in before) but to my shock when he started to work on my face - I had NO idea of how much pain I was still in, until he touched certain areas of my jaw and neck. It would be similar to someone having a tight muscle in your back and having someone massaging it to work it out. Now it feels similar to the other side but it still pulls in areas of my neck and eye.

I haven't had any therapy for about 2 months and nothing seems to be improving any longer. I might try a little more but I know that I have pushed my recovery to the limit. They say your going to get as much back by about 2 1/2 years but I am here to tell you my recovery has been ongoing until now slow but steady, so don't believe everything they say but you must take control and get some sort of electrical stimulation.

traveling

2011-02-25T21:01:00.000-08:00

I have just done two back to back workshops, one in Lake Charles LA & the other in Houston TX. I have been feeling great ...other than getting over a cold. I got home around 1:30 am this morning and still feel good but a little tired. I have a few little twinges in my knee etc. then get a little paranoid - is it coming back? am I over doing it? I really try not to live in fear of a relapse.

I want to "live" life and not live my disease. I know they say it never really goes away. So I try to be mindful of taking my supplements, exercise, and watch my stress level. I don't really feel as if traveling and teaching is stressful even though it is alot of work. I feel the potential drama of everyday life can be more stressful. My plan is to continue one ontil the middle of summer then see my doctor again and get more blood work to see how my body is handling everything.

Lake Charles Feb 2011

2011-02-25T20:41:00.000-08:00

It's been two months since I got the word

2010-11-14T15:36:00.000-08:00

It's been two months since I got the word that I was in remission, I am doing fine and have lots of energy. I still get a little nervous from time to time if something is off but that is to be expected. I just got back from teaching workshops in Hawaii, (the Big Island and Maui) I had a wonderful time and had more energy then most students so to me that means I am doing well :)

I'm In Remission

2010-09-11T20:40:00.000-07:00

Got the word the other day that I am done with my treatment and that I am in remission.

I have been symptom free for almost a year, so I have the okay to resume my life without antibiotics. I am still supporting my immune system with many of the supplements I was taking. I just had another full panel test and at least my body is now starting to rec zone this as a problem and has started to kick in to fight. This doesn't mean I can't get it again or have another bout with it but it does mean I have fought a good war and am on the winning side.

I am trying to keep my stress level down, meaning that some things that use to bother me are really not that important and prioritize what really is. It's funny how I can now see things that when people want to engage in a trivial issues how unimportant it is.

I am grateful for the opportunity to have learned so much that I have been able to share and help others. I believe attitude is everything. It is really tough to keep your head up and keep on fighting when you think it will never end, and it is so very sad when many of your loved ones really do not have a clue of what you are going though and think that all of your doctor appointments are unnecessary and a waste of time and money. But they don't have the information or education on this subject and there is no easy answer or quick fix. If you only treat the symptoms and not the problem it will continue to be an issue.

In any case I'm in Remission !!!

How it Started

2010-08-09T07:48:00.001-07:00

Before I really had the classic clear symptoms. I would screw up when filling orders (i thought I would fire me if I was my employer). I felt like I could not complete sentences ( it was like the brain fog you have after kids) I thought I was maybe having early Alzheimer's ???? I couldn't remember where to start when teaching a workshop, I would use other words than the ones I wanted to when talking - I thought oh that's okay, it's the artist in me. I started slipping and banging into things, I didn't have a good concept of where my body ended and an object began. as it started to really progress I felt off, I had a pain that started in my left knee traveled to my right, up my hip, to my back then neck...I thought I should see a doctor but didn't know what to tell them, thought I had some kind of virus moving through my body. had really bad headaches for about a week but Advil took care of it, started getting more exhausted, could turn my neck so well thought I was just getting older, then I thought maybe I had meningitis but I could touch my head to my chin so I knew it wasn't that. My neck start to make crunching sounds, you know like if you are getting a kink out.

then my left ear all of a sudden hurt but not like an earache, inside but not by the drum, then other headache, - that was the beginning of the Bells palsy and the nerves started to get paralyzed. I felt like I was hit in the head with a bat, unbelievable pain, they put me on steroids which is not good for Lyme and helps to hide it if you are tested, it goes on and on....etc
the next year I was diagnosed with a hyperthyroid / Graves disease and I thought - this just can't be right, I am a health person and there is something seriously wrong, again another false negative Lyme test the meds for the hyperthyroid / Graves disease helped but where only masking the symptoms of the problem. They wanted to kill my thyroid, but I had a cousin that said whatever you do don't let them do that if at all possible, thank god i listened.

It does go on and on and is a long story. But many of the symptom I had were classic and they never paid attention to them or to what I and my husband were saying, we suspected Lyme but the docs were not interested and said it is not in our area. That is why I am so passionate about letting others know and try to help them inform themselves. you can always visit my BP/Lyme blog for more updates and information :)

Tick''em off your list - Borders Today

2010-08-05T08:35:00.000-07:00

Tick''em off your list - Borders Today
Champion Scottish canoeist, and holder of a mountain climbing record is on a mission to warn other outdoors enthusiasts about Lyme disease.

Informed Patient: Steps to Fight Ticks in the Yard - WSJ.com

2010-08-04T22:25:00.000-07:00

Informed Patient: Steps to Fight Ticks in the Yard - WSJ.com

From the Wall Street Journal: "Not only are more diseases being spread by ticks, but more species of
ticks are transmitting disease, including some, like brown dog ticks,
not previously considered a danger to humans." For more information click on the link above

YouTube - How Lyme Disease and it's Treatments Work.

2010-08-02T21:31:00.000-07:00

YouTube - How Lyme Disease and it's Treatments Work.

Plum Island, Lyme Disease And Operation Paperclip - A Deadly Triangle

2010-08-02T21:28:00.000-07:00

Plum Island, Lyme Disease And Operation Paperclip - A Deadly Triangle

Lyme Disease - A Biological Weapon?

2010-08-02T21:26:00.000-07:00

Lyme Disease - A Biological Weapon?

2010 Testing results

2010-07-29T07:58:00.000-07:00

What should I make of this? I just had a set of extensive testing done through IGENEX (a full panel and full co-infection test) fortunately the positives in my test from 2008 were now negative meaning, I am not showing Babesia right now (co-infection) and the Lyme marker that initiated the treatments are also negative. The unfortunate thing is that other markers are now positive, (instead of everything being clear) what this seems to mean is that my body is at least now starting to recognize that I have or had a problem and is making antibodies (which is a good thing). So the prognosis is that I need to be vigilant in my awareness of my body and not ignore any potential signs of activity.

It is not surprising to have these new positive results in my testing, because my CD57 is so low at 14 (should be 60-360) but the odd thing is that many other people that have much higher CD57 (considered in the normal range) are much much worse than I am, and I am doing GREAT, have energy, can complete a sentence, good memory, body feels good etc. You would never know I had Lyme unless I mention it, and that is why I talk about it.

The potential affects of this debilitating disease or so great, even fatal, you have to be diligent in finding the problem and about your recovery.

Reasons for False Negative (Seronegative) Test Results in Lyme Disease

2010-07-01T07:18:00.000-07:00

Reasons Why A Seronegative Test Result Might Occur
Tom Grier, Lyme Alliance

From the Lyme Disease Foundation and the Lyme Alliance
Compiled by Melissa Kaplan 2003

1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.

2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.

3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person's immune system, thus reducing or preventing an antibody response.

4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.

For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.

5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.

6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.

7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).

Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.

8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.

9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive.

1. Recent infection before immune response

2. Antibodies are in immune complexes

3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls)

4. Spirochete are deep in host tissue

5. Blebs in body fluid, no whole organisms needed for PCR

6. No spirochetes in body fluid on day of test

7. Genetic heterogeneity (300 strains in U.S.)

8. Antigenic variability

9. Surface antigens change with temperature

10. Utilization of host protease instead of microbial protease

11. Spirochete in dormancy phase

12. Recent antibiotic treatment

13. Recent anti-inflammatory treatment

14. Concomitant infection with babesia may cause immunosuppression

15. Other causes of immunosuppression

16. Lab with poor technical capability for Lyme disease

17. Lab tests not standardized for late stage disease

18. Lab tests labeled "for investigational use only"

19. CDC criteria is epidemiological, not a diagnostic criteria

Feeling low

2010-06-22T22:10:00.000-07:00

I guess I am feeling a little low right now, just had the full panel and co-infection tests which will take about three weeks for the results. In general I have been doing really well but had a nasty headache last night which seems to be cycling every 3-4 weeks this could be a coincidence or possibly hatches. I would normally not worry about it but the headaches and while on my last trip dizziness (which might have been from being tired or needed more water) and my speech a little slurry I want to be on top of it instead of waiting for it to get really bad. I hope I am over reacting but the physiological bump was having the low CD57 at 14, the lowest it has ever been, maybe it will never go higher or their is another unseen problem or co-infection. The current tests can not diagnose all co-infections.

Low CD57

2010-06-18T07:45:00.000-07:00

We just wen over my test results and my CD57 is at 14. For the lat two years it has been at 19 with an occasional 30 and one time 57 (boy that was exciting). The normal range should be between 60-360 and anything lower is considered severe and chronic. I am usually devastated when I receive this information of a low CD57 but perhaps I am not terrible surprised any longer, just really disappointed. I feel really good, have a lot more energy than many other people with much higher and normal CD57's so what's up with that.

Our next step is to run some of the original testing through IGENEX a full panel #6040 test along with a co-infection panel and also run the new (LTT-MELISA® test for Lyme disease) from Germany so see if I still have an active infection. Will know more in about a month when I get the results.
CD57 information

http://freeideasblog.blogspot.com/2009/06/cd57-not-necessarily-lyme-specific.html
http://www.morgellons-disease-research.com/Morgellons-Message-Board/lyme-disease/3855-everything-you-wanted-know-about-cd57-test-ginger-savely.html

What is Normal Now?

2010-06-18T07:29:00.000-07:00

I have been off of the antibiotics now for the Lyme treatment for 8 months. I have been feeling really pretty good but do get a little paranoid when unusual things start to happen like being a little dizzy, tired, bruising etc. I am not sure now what is normal and what might be the early signs of another outbreak. before I left for my trip (teaching working on painting) I had more testing, (I believe it's a good idea to stay in contact with your doctor and try to stay ahead of any potential problems). When I returned we went over the tests. As it turns out my thyroid is mostly normal but it looks like it has some elevated levels as if I am having some immune issue thinking about starting up again or if if I was wheat intolerant that would not be unusual but all of those tests look fine and I don't feel any different when after I have eaten wheat. I think in general it is much better to stay away from wheat but it is SO difficult when traveling and teaching it is almost just too much to think about then because at that time it is a marathon of traveling and teaching (I thought this trip would be a good test for me to see how I held up and boy was I an exhausted mess when I returned).

New Test For the Diagnosis of Active Lyme

2010-06-18T07:21:00.000-07:00

There is a new test that was announced last week that is being released here in the US called the (LTT-MELISA) for Lyme borreliosis. This test was created in Germany with testing here through IGENEX. There is promise that this test can give better accuracy than the current CD57 in diagnosing an active infection of Lyme. This would also be wonderful for people that have already had long term treatment and still have low CD57's. Some people may always have a low CD57 but this test shows promise in better understanding the activity of this disease. MELISA® Medica Foundation (LTT-MELISA)

My face

2010-06-10T03:53:00.000-07:00

I was just interviewed by a TV station WBKB 11, CBS Affliate, about my workshop in Alpena about my workshop, turned out great, my face didn't look too bad. People that don't know me may not realize how different it is. I am already such an animated person and when teaching or meeting people I try not to let any of this stop me from having fun or being myself. But I guess I still have a little sadness when I see a photo or video clip and I am excited how uneven it is. I know I am incredibly lucky to have as much recovery as I do but has not come easy and not by itself. Everyone told me I would not recover since the Palsy was SO bad and did not change within a certain time frame, they said I could still have some recovery but I told them 3 months later that I was just beginning.

It has taken months of acupuncture with electrical stimulation with breaks in between so not to over do it and make it go in the other direction (so not fun - the joker smile) letting it relax again then starting the electrical stimulation again. I did Physical therapy too with stronger electrical stimulation which was good, but again having to be careful that it didn't constrict it too much and ball up all the nerves in my face.

I have been feeling that I needed to have the muscles in my face stretched a little since I feel many of the nerves that have connected again but don't know how to relax and stay tight. At this point I am feeling that the osteopath may be the best bet to do what my body is intuitively telling me. I have been to three during this adventure and think that perhaps this last one may be just the right person that I need to see, since I had no idea that how much the placement of pressure could be so painful. Similar to a knot in your back and having a deep massage to release it.

Started traveling again

2010-06-10T03:42:00.000-07:00

June 2010: I have started to travel again teaching workshops and have been very happy about it. With the East coast/ West Coast time change that can be tough. When I'm tired my eye on my Palsy affected side looks so different than the other.

I have also started to feel a little pain with significant twitching in my thumb on my left (Palsy side) which makes me nervous... I have also started to feel dizzy...I am not sure if I am just really sensitive to the bounce in old buildings etc. or is this normal or the next adventure?.

Osteopath and Bells Palsy

2010-05-28T21:04:00.000-07:00

Went to see an osteopath doctor today for other reasons but we talked about my Bells Palsy. As he was working on me he started to work on my face. My face is still sort of swollen from the trauma of the BP and has been like that for years. It's better and nowhere near as bad as it was but it is still there.

When he started to work on my jaw and the inside of my cheek I could not believe the intensity of pain I still had. Tears were welling up in my eyes and I had to take a break and a breath occasionally but the fascinating thing is that I knew he was doing exactly what needed to be done.

I have been feeling new twinges and perhaps new nerves are waking back up, but they have been bunched up for such a long time that it makes sense that they need to be carefully released and gently stretched so the channels can be opened and the nerves relax again.

Where do the ones you love go?

2010-05-27T21:25:00.000-07:00

It is a very sad thing when the ones you love the most have know idea of what you are going through and make you feel horrible for ever being sick. Even when you try to function with a freakn picc-line, and try to do as much as you can for them it's still is not enough for them. Do they come by or call when your in your depths of your survival to offer support, No.

Then when try to get your life back and return to work to make money to pay for all of your medication and treatments and rebuild the thousands and thousands of dollars you have spent (depending on how long you have had the disease). Your still not giving enough to them.

One thing about this disease it really teaches you about boundaries and how stress can be detrimental to your survival. You learn to eliminate or reduce any unnecessary drama. It's so sad how selfish and unsympathetic friends or family can be, when you are not able to be on their demand and to give to them. Then when you feel better and think you can start to show them how much you love them it is still not enough.

When you have Lyme there is no vacation from this creature that's living inside your body. IT IS WAR and a constant battle....and perhaps the biggest lesson in this battle is that YOU need to be number one and your priority...on that note, thank you Lyme for that lesson.

Bells Palsy is a Symptom of LYME

2010-05-26T07:40:00.000-07:00

I have just been reminded how many of my new friends have had, have or know someone with Bells Palsy and not too surprisingly these friends are being diagnosed with Lyme and most times, months or years later.

If you have or know someone with BP and they are extremely fatigued, had BP more than once among many other symptoms I will just about guarantee you that they have LYME. The longer it goes undiagnosed the longer the treatment

It's tick time ... and Yes those little poppy seed ticks can devastate your life. If you suspect you may have it don't take a negative test as your final result most tests have a false negative rating, and you truly need to see a LYME literate doctor ...personally I would not see an infectious disease doctor they use different guidelines, shorter treatments and I have seen too many chronic cases as a result.

Yes this get's me fired up ....too many suffering people and too many uneducated doctors, telling many of you that your crazy, this does't happen, you don't live in a Lyme area, blah blah blah that is why we need each other.

Three years tomorrow, May 4

2010-05-03T20:43:00.000-07:00

Well tomorrow May 4 it will be my three years of when the Bells Palsy first hit and I was medi vaced out by the EMT's (not too fun). Three years later I fianaly have more eneregy and feel that I have a healthy glow again.It has taken three years to be able to see all of my teeth again when I smile, I'm still working on trying not to close my eye when I smile or talk. It sure takes a lot conscious thought to isolate those nerves and stimulate facial memory. I know I may be at the end of more possible recovery but I believe the nerves may still have a little more left.

I found that if I stayed on the electrical stimulation via PT or acupuncture it can have an adverse affect and actually go in another direction similar to a jokers smiles. So I tried to take breaks in between then aggressively exercise those areas again and it has seemed to work pretty darn good. I still am not too fond of pictures of myself, it's hard to get use to my one eye being smaller than the other, but I am still very lucky to have finally discover what was wrong with me and that the BP was only a symptom to a much bigger problem. In fact today I was thinking how lucky I am and how I love my life.

Wavy hair on one side of my head

2010-04-06T22:00:00.000-07:00

The crazy thing about being so sick over the last three years is my really straight hair is now starting to get wavy "and" it is all on one side of my head (lovely). My hair has always been so straight that it never held a curl, but now it's wavy but it is only on one side of my head the side that was affected by the Bells palsy. I don't know if it is from the illness or antibiotics but it a huge change, (oh I am sure that would look nice if I had a hair cut.)

Before I got the BP I noticed I was loosing hair and had no idea why, I felt like a shedding dog, the hair lose was incredible. A year after the BP I came down with graves disease and it made sense that the hair lose was from that, but the Graves disease, Bells palsy, hair lose, memory problems, stiff neck and knees were all symptoms of Lyme Disease.

Bells Palsy or Lyme

2009-11-14T08:23:00.000-08:00

This photo was taken six months after I came down with Bells Palsy before I knew that I had Lyme, they said I would NEVER recover, but I truly now have about 90% of my face back. I did Alot of acupuncture twice a week, I was barely able to make it to the appointments due to exhaustion. I don't have many photos of myself during this time because I wasn't sure myself if I would recover. It took about 6 months for me to train myself to blink again, the blink was slow and delayed but now almost 3 years later my face it not as swollen and if I don't smile really big you wouldn't really know, but one eye is still smaller now and I am still working on it.

60 % of people with Bells Palsy actually have Lyme - I knew mine was different when I first got my Bells Palsy, the extreme fatigue, pain, etc. was not normal. When I first came home from the hospital. I felt as if I had bugs inside of me, it felt as if I was part of a germ warfare experiment......turns out I was pretty right on.

The doctors were not able to diagnose it, I had three false negative tests....most of the current testing available is worthless, unless you got to the right lab. I first requested my blood go to the right for the most accurate testing (right from the beginning) the unfortunate thing is the lab tech decided to send it in to a more convenient cheaper lab.

A year after I got the Bells Palsy I came down with Graves disease, I am really a healthy person ( I know that seems hard to believe but I am, that was another reason none of this made sense) and that is why when they told me that I had another problem it just didn't feel right, I knew that there was another bigger problem and these were symptom of something else. Before I knew what was wrong with me I was traveling again I thought my fatigue was just my body trying to recover.

In 2008 when I returned from New Orleans and North Carolina I mentioned to my class travel experience along with why my face still was disfigured etc. when one of my students mentioned that I might have Lyme. That finally felt right, I knew that had to be what it was, that is when I started my journey of diagnosing myself. I ordered a test kit from the lab and started using my doctor as a vehicle to get things done, my doctor was at such a loss she was willing to do whatever I wanted. Most doctors around where I live don't believe it is here they think it is only on the East Coast...anyway long story.

I felt like a crazy person, I was doing much better but still pursued the testing etc. It took another two months to get the results, a month for the test and another month to get it read, the doctors, neurologist, endocrinologist etc. couldn't read the test. so the only person I trusted then was the director of the lab. I got a copy of the results myself, my current doctor thought the test was negative but I saw one small positive and asked my doctor what that was, she didn't know.

I felt crazy because I finally felt good but was still pursed this testing thing. I recognized that there would have been no way I could have done it while in the midst of all of my fatigue.

It seems perhaps that people that have Bells Palsy without severe pain and fatigue just have Bells Palsybut there are certain signs to look for that help show the difference. Anyway everything is a blessing if you choose to look at things that way and now I can help others.

Since then they have published a few of my articles in the local papers to help make our community become more aware.

Detoxing from Antibiotics

2009-11-10T18:38:00.000-08:00

I know my treatment is not over, but at least I have a break for a little while. I am on a program to detox my system right now, give my body a rest then check my lab work again then probably return to treatment. While detoxing I had horrible headaches but that seems to be backing off. All is good.

Feeling Normal

2009-10-22T20:28:00.000-07:00

For the last three days I am starting to feel normal again - I am now remembering what that was like. It is strange not having to go to appointments every day. I know that I am taking a break from antibiotics maybe if I am lucky longer, but I feel good finally.

The picc-line is out for now

2009-10-17T18:36:00.000-07:00

Had the picc-line pulled on Friday just about the same time that I should have been flying out of here for the Pasadena trade show. I finally realized that it really was a good thing that I stayed home, the skin site under the dressing was red and irritated on it's way to being what they call "Angry" not a good thing. Hopefully, maybe, perhaps I won't need another one but maybe I will but for now they are giving me a break from the antibiotics and perhaps I can have a little of my life back and not always in the car driving to doctor appointments. maybe I can have time again to paint or do my instructional DVDs I am having more energy and am looking forward to it.

Good thing I am not in Pasadena

2009-10-15T20:35:00.000-07:00

It was a good thing that I canceled my trip to the Pasadena trade show
I got the CD57 tests back - they better ..I had them an hour apart and got two different results
one came back at 40 that was taken at 1:33pm and the other at 67 taken at 2:40pm (I was at 19) in both cases the numbers are better but the difference doesn't make any sense. This is suppose to be a cell marker and should be affected by the time of day or if I have eaten - we are looking more into it. In any case it is better and I do feel some relief.

The big problem right now is that I still have my picc-line and am not on antibiotics right now due to liver enzymes being elevated. On Monday I had a dressing change, we have only been using one kind of cleaning solution and this time they used two almost immediately my are started itching, I thought perhaps since it was a new dressing. but it was an allergic reaction- and most likely from the solution- it has been getting gradually worse as the week has gone on we decided to pull the picc-line to give my liver and arm a break.

So I made an appointment to have it pulled out and went to the hospital but the nurse never showed up, no one could find her, no answer to pages or calls and no one else could remove it - no ER doc's or nurses, the intensive care nurses were freaked and didn't want to touch it, almost the same thing happened last time and it just got worse from there on until the reaction became systemic (and this is happening when things are going well). I considered going to the next county but I didn't know if that would be any better - it didn't seem to make a difference...so I will have to go back to the hospital tomorrow.
I was just in tears - I am tough and handle it just fine until I see that no one knows what to do or where any one is - then I get overloaded and break down. It is suppose to be easy to remove but the big deal is to make sure that the whole line comes out intact. Good thing I am not in Pasadena.

The wind is out of my sails

2009-10-07T20:24:00.000-07:00

It looks like I am having a major setback and might not make it to Pasadena after all.

I got some bad news from my doctor yesterday about my CD57 test it dropped back down to 19 after climbing to 57. What happened I thought I was feeling better in general, I have had headaches for the last week and joint pain so I did sort of feel as if I was in the beginning again so what happened?

I had more blood tests today ...same CD57 test in two different counties at different labs to see if the test was wrong or if we can find some inconsistencies.

I am seeing my doctor tomorrow and we will decide if I should cancel my whole trip, it just might be too much for me. I have been having a few issues but in general I thought I was doing really well. My attitude has been great - I believed I was on the winning side but the news just took me out and let the wind out of my sails.

Hold the Antibiotics

2009-09-29T20:31:00.000-07:00

I have a feeling that I am on the winning side of this thing but then started to have a pain in my right side, back & under my ribs, I knew it was one of my organs. My doctor called me in to go over my current test results and ordered my to stop all antibiotic immedialy. My liver ensimes were elevated to a point that we needed to allow it to return to normal. It is not unusual for the liver to elevate while on so many antibiotics and he is watching me like a hawk. He explained that we need to see how quickly the liver recovers to see which one of the antibiotics is taxing my liver. Quick improvement means the IV Rochepin slow means the oral. If it is the IV Rochepin we will just change to a different infusion.

Had another CD57 today - should know soon if there is more improvement.
If anyone thinks being sick means that you sit around the house all day ...boy are they wrong, all this driving to doctor appointments is like having another full time job and exhausting....but I do believe I am finally close to the finish line, that is why when I don't feel good I can't really wrap my head around it because I feel as if it is gone but then have to realize I might still have a ways to go. It's been over 2 1/2 years since I had the noticeable onset of my problems and 1 year 1 month of treatment now.

Working while having a picc-line

2009-09-18T17:51:00.000-07:00

I am feeling better and trying to get back to my life - but sometimes I am walking a fine line. In the workshops no one would even think I have Lyme or any problems - but sometimes I feel pretty lousy, I have learned to pace myself. I have had students say, if this is you when your feeling bad, Jesus I can't even imagine what you would be like when your well. All I can say this is a battle that I intend to win.

I had to cancel all of my national and international workshops due to this disease but planed on keeping all of my California workshops. After having an allergic reaction to the dressing for the picc-line and seeing how it effected my whole body, (to my surprise) I am very happy that I did. It is one new experience after another, but my CD57 numbers are increasing and I have learned the importance of the picc-line.

I have had the picc-line for about 5 months now (but don't think it will be much longer). Before the allergic reaction to the dressing I had the first picc-line for 4 months. It has not been terribly fun, the first one was easier than the second, I developed a histamine reaction to my first infusion of the week, and found taking children's Benadril helped .....I wanted to quit, but the picc-line has been the only thing that has made a difference and improvement.

When I first got the picc-line they all said I could travel but it really is not as easy as it sounds, perhaps if you are resting but working can be a little bit of a challenge, lifting, reaching, infusion times etc. you just have to be careful and aware. Sometimes I am on the verge of disbelief that I have to teach a workshop at that moment, but when I am there I am filled and lifted by the response of the students and helping them.

About the Lyme test

2009-08-29T18:28:00.000-07:00

First you'll need a test kit from IGENEX http://igenex.com I would do the #6040 full panel test, you will need a doctors order to have the blood draw. Once you have that you can have the draw at any lab - but not all labs send the test back to IGENEX. If they don't you will need to FeEX it yourself or go to Hunter or LabCorp double check that they will send the blood to IGENEX. you will need to follow the trail to make sure it gets to the right lab.

testing take about 3 weeks, the results then goes to your doctors office, you will need to follow up and get a copy for yourself - not all doctors know how to read the test. Once you have the results you can call the lab if needed and talk to Dr Harris to go over them. If it tests negative don't get too comfortable yet, the next step would be to possibly have a dose of antibiotics then have a Urine test. If your Lymes test is positive I would then have another blood test the #5080 (I think that is the number I would have to double check) confection test.

Here is my Lymes blog http://bellspalsylymesdisease.blogspot.com/
under my picture you will find lots of links and my doctors information link.
If you do have Lymes short term antibiotics don't work, you need to make sure the doctor you choose knows about long term antibiotic and continues even after for a little while after they think it is gone, you also need to make sure that the doctor knows about co-infections when choosing the doctor

Allergic reaction to the picc-line dressing

2009-08-17T20:43:00.000-07:00

I have had the picc-line for almost 4 months and finally had some improvement. This gave me a moment of catching my breath and the ability to continue the fight.

Within a few days the fight was back on in a major way I started to have an allergic reaction to my IV dressing. I felt as if I was being branded with a hot iron. It was itching like crazy, hurting and starting to turn red, I asked the nurses what they thought and no one wanted to take responsibility, they say talk to the doctor, but the nurses are the ones that are seeing it when changing.

I was starting to crumble and getting very scared, no one was listing to me, it didn't feel as bad but it was not good. I went back to the hospital and to the original nurse that put the line in and we decided to pull it on August 15 so it could heal and we could treat it. We did not want the oozing protein from rash to give me an infection.

I have a week off so I can teach my workshop – I don’t feel so hot but still need to make money if at all possible to pay for everything. I get nauseated for periods during the day, which passes; this could be from my liver and all the drugs or from all of the supplements that I need to take to try to keep my immune system up (if possible).

We will need to reinsert the line when I return, which I am not terribly thrilled with, but if I can have a little rest, I might be in a better mindset for the fight again. My mental state was getting very depressed from fear and thank god for that little bit of good news, which was only a tiny thread for me to hold onto.

What I have decided to do is a strip test on one leg first before we reinsert the line, I want to see if I can find where the problem is and to what I am having a reaction to. If is not a clear reaction I am wondering if the wound site was not allowed to completely allowed to dry before the bandage was put on and had a chemical reaction or perhaps it was the steri strips, but I am trying to find out as much as possible first.
---------------------------
Had the picc reinserted August 25
As soon as I returned from my workshop the next day I had the picc reinserted, During my week off I tried different bandages on my leg and it all looked good but I didn't see a small reaction under one of the bandages. E used the Sorba View dressing and within a day it started itching and turning red again I immediately went back to the hospital and had them change it to the Oposite 3000 which had no reaction on my leg.

This picc line was more difficult (not fun at all - this was harder than the first one) I had a basil reaction in the vein making it very very painful and my arm bruised. Partially my fault I think - I know better I should have been more hydrated. Since I was just returning from the workshop and zooming to the hospital I didn't drink as much water as I should have.
--------
After only 1 day the reaction started again, as you can see. We changed to the Opostite 3000, but was still now branded on the other arm, and it was itching, I spoke to the doctor and picc nurse to see if it could be possible to peel back the bandage just a little to expose the irritated area. They said yes if I could still leave a wide area protected from the insertion site.
I am so glad I did - now two weeks later it is starting to look normal again.

Finally some good news

2009-08-08T07:06:00.001-07:00

Finally some good news - my numbers are starting to change and I have them on the run! but still have a long ways to go. My CD57 otherwise called the Stricker panel has gone up from 19 to 57 I still have a ways to go to get to 200 but I have a glimmer of hope again

Thank you for your support - what a long road, I was starting to think I might need alternative plan, it was suggested by some doctors to start thinking about Stanford or UCSF, but for now I am very happy with my current treatment. - (as happy as one can be with an IV-pic-line, a million other pills and spending thousands of dollars etc.)

There is such a difference in opinion in the medical community and not much knowledge about it "especially" out here on the West Coast. I do sometimes hesitate to talk about It or think I might be judged by those who only want to hear happy thoughts but since my journey was one incredible obstacle after another, and there was so much wasted time in-between. I think it is more important to bring awareness to this subject. I have seen and spoken to people that have been devastated and crippled by this disease and completely feel hopeless. What an education this has been and knowlege is something that should be shared.

Parkinson's Disease or Lyme Disease

2009-08-08T07:03:00.001-07:00

If you or anyone you love is diagnosed with Parkinson's Disease, please, please, please - see a Lyme literate Md, have a blood test through IGENEX tick borne specialty lab only ( http://www.igenex.com ). Join a lyme disease forum for patient help with finding a Lyme literate Md and how to get tested.

There are many, many stories about patients misdiagnosed for years with Parkinson's only to find out they had Chronic Lyme Disease.

For more information see the links below and check back often as more will be added as they are discovered.

A message from another forum:

Did you know that Michael J. Fox was diagnosed with lyme disease three years before being diagnosed with Parkinson? Did you know that 4 workers on his movie set were also diagnosed with Parkinson? The movie set was in Conn. - lyme country. My brother in law was diagnosed 20 years ago with Parkinson, 10 years before that he was bitten by a tick while camping. He is starting his research on the correlation between the two! My husband was diagnosed with bipolar, dementia, degeneration of the brain, parkinson, etc. etc. Four months ago he was finally tested for lyme disease tests were positive including spect scan. He has been on antibotics for four months now and doing quite well. Each month he gets better and better. I had to fight tooth and nail for a Doctor to listen to me to no avail. Finally, I took him to see a Lyme Literate Doctor and the rest is history. Just wanted you to know and to take your conditions into your own hands, the Dr.s don't know everything. We are living proof of that.
http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=10&t=777

What a long healing process

2009-06-14T22:01:00.000-07:00

To look at me you wouldn't think anything is wrong, this is typical for many Lymes patients.

It is now hard to remember what feeling good is like. When I wake in the morning I think I might be getting better and plan for my day - then around 10-11am I still need to lay down or take a nap for a few hours this is so unlike me. I use to get up at 3:00 am in the morning to start work creating my DVDs or painting, then from 6-10am I would do my morning chores then paint again for the rest of the day. This all feels so foreign to have had to slow down so much, I realize I am lucky and am doing amazingly well for having such a low CD57 count I could be in much worse shape.

I felt better before I started the antibiotics, until the next big thing happened but this is all typical part of the healing process.

Things to know about a Pic-line

2009-06-01T19:22:00.000-07:00

I found out a few things about the Pic-line today that would have been nice to know sooner and will hopefully be helpful to anyone else who gets one of these.

The clamp was getting very uncomfortable so a few weeks ago so I asked the nurse if she could cut it off - no problem- the next nurse that did my dressing change made it very clear that it was not a good idea because if the cleave broke I could bleed to death (nice to know). It is extremely rare, I then said to her that I had the special line that has a valve on the internal end, she then told me that this kind of IV line has only been out for about 6 months and should work fine - but did I want experiment with it. No.

The other thing she said is after doing the saline push at the end of each treatment try not push the syringe all the way down, try to leave a 1/4 inch of solution in the syringe because this prevents creating an airlock, if an airlock exists this can create a problem leaving one end open where the blood could back into.

I asked her what were the benefits for a slow push of the antibiotic, she said because it is very irritating to the veins, so a slow dilution is much better.

In general the pic-line is easy to live with, if you have it for awhile the the skin can become a little irritated so ask the nurse when having the to dressing change to go slowly or it may tear the skin a little.

When taking a shower in general they say use plastic wrap and tape, (but this is time consuming and leaves lots of tiny areas for water to seep into) for some reason they don't promote pic-line covers much. But I have to say the cover has given me just a bit of freedom back and well worth looking into. You can find this on my links section.

Never Give Up

2009-05-23T22:56:00.000-07:00

In this is a battle you really can't turn your health over to the medical profession. You can not rely on normal or quick Lymes testing because over 40 % of the current testing will result in many False Negatives. If you rely solely these tests you will have a false sense of security when actually you may still have a raging case of Lymes or a Co infection.

Testing
You may have to battle your doctors to get the most accurate testing - I suggest IGENEX. Your doctor may say Lymes is not in your area and there is no need to worry about it - Don't believe it. The doctors or health clinics are not really aware of what may be happening in you area and during that time you are gradually getting sicker and sicker. The doctors may continue testing you for everything else under the sun and still not know what is wrong with you, while not even considering Lymes.

Antibiotics
You can not put all of your faith in your doctors, if they say a short 28 day coarse of antibiotics will take care of your Lymes problem - that is NOT true. If you have just been bit and they caught it within the first week or so that may be true (this scenario is very unlikely).

If you have tested positive and had symptoms for 1-2 months more than likely you will need to be on Doxy for up to 4 months 200-400mg 2-3 times a day. If you have had the spirakeet longer (mine was undiagnosed for at least 2 1/2 years, I had classic symptoms and they didn't catch it). If caught early you will need antibiotics for 4-8 months or longer and depending on the severity up to 1-6 years or longer. So the key is to catch it early. You may have to fight with your doctor for the treatment or find a Lymes literate doctor. One reason for the duration is the need to kill it during the many cycles it goes through, Lymes spirakeets will go into a cyst form to protect itself when it feels threatened or mutate, so you need to extend the treatment well beyond the time frame to make sure that you have gotten the bacteria.

If doctors tell you not to worry - it was not in long enough. Wrong - if it was not properly removed - you could have just squeezed the bacteria and parasites into you. (Never squeeze the body use a fine tweezers and remove it by the head).

Not all Doctors think the Same
Not all doctors think in the same way, you will need a doctor that uses integrative medicine (I wasn't interested, I just wanted them to napalm this thing but learned very quickly you really need both or you will be one very sick puppy). I would NOT suggest infectious disease doctors, you may be lucky and have one that really understands Lymes, but from what I have seen I am not impressed, most doctors are not educated in Lymes or only know basic information.

Most doctors will rely on the quick Lymes test which produces too many False Negative results. (I had 3 False Negative tests, my body was not making antibodies to fight this disease off).

When you get tested I would prefer to have a full panel Lymes test not all doctors know how to read them, so get a copy for yourself and look over the results and see if there is positive anywhere in the results. Some doctors will see that most of your results are negative and that is what they think. (Once I got the right testing done and got the results my doctor thought it was fine she didn't notice the 1 small positive result, I got a copy saw the small positive and called the director of the lab.) I showed my results to other doctors first, they were not interested, it was not their speciality and would not even look at it.

I thought I was Crazy
Most important follow you intuition, you MUST be your own advocate. - I hit every obstacle imaginable along the way, I was so wiped out but still tried to function, I thought I must be still recovering from the Bells Palsy or just lazy but actually the Lymes was systematically moving through my body, and it wasn't until one of my students pointed me in the right direction to the right lab where I started to get some answers. At this point I was feeling better and thought I must be crazy for pursuing more testing, but I also knew at some point another weird thing would attack me. I think of myself as a healthily person and all of this was just to strange so I knew there had to be an underlying problem. That is why I suggest the 6040 full panel Igenex test (and even then you may need more testing to find it) any other testing will lull you into a
false sense of security until it hits you again!

Get Accuarte Testing
The most common and cheapest tests are Enzyme-linked immunosorbent assay (ELISA), Indirect fluorescent antibody (IFA), and Western blot test. These are quick tests with results back in a few days these tests are used to look for the Lyme disease antibodies..... the problem is you may not be making anitibodies, meaning your body is NOT trying to fight this bacteria off. (I had no antibodies but still had a raging case of Lymes / Babesia.) The only chance you may have in finding the disease with these tests is if you are on a coarse of antibiotics which create a die off reaction that can then be detected. Insurance companies only pay for a very small portion if at all due to suggest CDC guidelines, these are hopefully in the process of being changed. This disease is very good at hiding and if you are on any antivirals or steroids or other meds or have any other variables you will have false negative results. Reasons for False Negatives more info on False Negatives

The Best and most accurate test -is much more in-depth and extensive it takes about 3 weeks for results, and if by chance that one comes back negative or the results are inconclusive you go to plan B. That means a very short coarse of antibiotics then the urine is tested. Please read How To Get Reliable Testing. For testing, IGeneX More information

Never Give Up you will have to fight for your answers.

Why insurance doesn't pay much if at all

First is: Diagnosis is not within standard guidelines.

Lyme diagnosis is not within standard of care

There is not such thing as Lyme disease (in this area)

Lyme testing used are not FDA approved or CDC approved i.e. Bowen, MDL, etc.

There is no clinical evidence of Lyme disease with this patient (based on being ill informed and lack of understanding of the stages and symptoms of Lyme disease).

Second is: Treatment is not medically necessary because of one of the two following reasons: 1) Not adequate data supporting diagnosis and/or 2) the treatment is not within the standard of care for Lyme disease

Treatment with IV’s for Lyme disease is not within standard of care

Length of treatment is not standard of care

Antibiotic used is not standard of care

Supplements are not within standard of care

More information on this article
Also suggested is to watch the Under Our Skin trailer or visit their blog available on links

Growing wings

2009-05-23T22:31:00.000-07:00

May 23 10:30 pm
I can hardly stand it, I feel as if my back is going to rip apart on the flanks and grow wings - at least that is what it feels like. I know this is part of the Herx reaction so it is all good - but ....whew ...this can be tough.

May 24 12:57 pm
Wow ... I am not horizontal in bed or on the couch for the moment and I might even try to do a tiny bit of painting. Right now my back is alright so maybe I have popped my wings, I have just a bit more than minimal energy. This is a big improvement!

Starting to Herx

2009-05-07T22:08:00.000-07:00

I got my picc-line last week and am starting to get use to giving myself the infusions and see what my limitations are. I am giving myself a little down time for the moment so I can try to heal.

I have been having the Herx reaction (which is what I expected). I have energy from about 7-11am - then I am down for the count. This totally sucks, I have plans of what I am going to do for the day, thinking that I am going into the studio ....but I never seem to make it....I am lucky if I can take my meds, take a shower without getting the bandages wet, wash the dishes, light house keeping, then I am down for the count again.

I figured this was going to happen and that was why I wanted give myself a couple of weeks, and see how the die-off goes before I made new commitments. One minute I am fine, usually from 7-11am I am thinking no big deal - I can take on the world, but at 11:30 everything changes, meaning headaches, large muscle and joint pain, fatigue etc - this is all a good sign, the IV meds are doing their job. The problem with the Herx, is that it goes in cycles every 3-4 weeks and the reaction can last 1-3 weeks itself, when I was really bad in Nov / Dec I had more bad days than good.

Many people once the start reciveing treatment for Lymes (oral or IV) want to stop the treatment due to the fact that the healing process is so tough the herx reaction brings back many of the original symptoms, is also called the Healing Crisis and the trick is not to give up. " Herxing" events have even been likened to an "exorcism" that is "a necessary evil to be endured."
-------
Wow - it has been 3 1/2 weeks since I have started the IV therapy ..and I really feel horrible . I thought this Herx reaction would be only for a couple of days but from my last ones knew this could happen.

I go between wondering if I am just lazy or really not feeling well, I can't make it off the couch and am sleeping alot again. Mom just called and was complaining about the 90 degree heat, I told her I am wearing a down vest and am using a down blanket....well I guess that answers my question.

May 19 - today is a good day, I actually did a little painting - I am trying to find me again.

The Herx reaction
Herxing

Got the picc-line today

2009-04-28T16:51:00.000-07:00

Finally had the IV picc-line today April 28 2009. I was so not looking forward to this but since no improvement in my CD57 numbers I finally felt resolved and went through with it. The toughest part up until now is the emotional roller coaster, were on then off, thinking I was doing better and finding that I wasn't really. Since my CD57 numbers did not improve there were not many other options for improvement, I could have opted for the painful injections but after talking to many nurses they all suggested a picc-line would be best and less painful.

Emotionally it is pretty hard not to be freaked out, imagining a line is going into a vein on your arm then threaded through your chest into a main vein just above your heart. The advantage of having the rocepcephin administered this way is that I will benefit 100% from the antibiotics instead of only partial absorption. 12 hours old - so far so good

The procedure was done in ICU, everything was sterile, I had a GREAT nurse (Val) she studied at Stanford and now teaches other nurses how to apply picc- lines. The only thing I felt was the Linacane to numb the area, it was no different than having my other IV's with the advantage of this one being much more effective. The hardest thing about this was the emotions leading up to it and the unknown limitations, how to take a shower, how much time would be involved taking all of my other drugs along with this IV, fear of infection etc.

After it was done I felt like I was released from a leash and since I feel so good I just have to remember I do have limitations and there is quite possible an upcoming Herx reaction. Meaning a die off of the bacteria that can make you feel horrible. But today is good and if anyone else is in fear about having one of these, it is not as bad as it has been built up to be. - (so far)

Picc-line information

Lyme symptoms

2009-04-11T21:17:00.000-07:00

Head & face
Headache, migraine
Pressure in the head
Tingling of nose, cheek, face
Flushing
Twitching of facial or other muscles (motor tics)
Jaw pain or stiffness (TMJ-like problems)
Difficulty chewing, swallowing, speaking
Facial paralysis (Bell's palsy)
Sore throat, swollen glands, phlegm
Runny nose
Sinusitis
Hoarseness or vocal cord problems
Increase in allergy symptoms
Change in smell, taste; smell or taste hallucinations
Unexplained hair loss

Eyes
Double or blurry vision
Oversensitivity to light
Floaters, spots, flashing lights
Phantom images in corner of eyes
Decreased perception of light or color
Vision changes incl. blindness, retinal damage, optic atrophy
Eye pain
Wandering or lazy eye
Drooping eyelid
Swelling around eyes
Red eyes
Conjunctivitis or "pink eye"

Ears
Decreased hearing
Plugged ears
Pain in ears
Ringing, buzzing, tinnitus
Oversensitivity to sounds

Digestive & excretory systems
Diarrhea or constipation
Upset stomach (nausea, vomiting, pain)
GERD (gastroesophageal reflux disease/acid reflux)
Irritable bladder (trouble starting or stopping)
Unexplained weight gain or loss
Loss of appetite

Musculoskeletal system
Bone pain, joint pain, joint swelling, or stiffness
Shifting joint pains
Carpal tunnel syndrome, tennis elbow
Neck is stiff, painful, creaks or cracks
Muscle pain or cramps (fibromyalgia)
Burning sensation in feet
Shin splints
Plantar fasciitis
Drooping shoulders
Poor muscle coordination
Muscle weakness
Loss of muscle tone

Respiratory & circulatory systems
Shortness of breath, can't get full/satisfying breath
Cough
Bronchitis
Chest pain or rib soreness
Night sweats, unexplained chills
Heart palpitations, extra beats or pulse skips (arrhythmia)
Heart blockage, murmur, valve prolapsed, heart attack
Stroke
Swelling or enlargement of heart
Diminished exercise tolerance

Neurologic system
Burning or stabbing sensations in the body
Peripheral neuropathy
or partial paralysis
Weakness or paralysis of limbs
Tremors or unexplained shaking
Loss of reflexes
Seizures
White matter lesions
Numbness, tingling, pinpricks
Poor balance, dizziness, difficulty walking
Light-headedness, wooziness, brain fog, fainting
Meningitis (inflammation of the protective membrane around the brain)
Encephalopathy (cognitive impairment from brain involvement)
Encephalomyelitis (inflammation of the brain and spinal cord)

Psychological well-being
Mood swings, irritability
Agitation
Anxiety, panic attacks
Depression
Overemotional reactions, crying easily
Disorientation: getting lost or going to the wrong place
Aggressive behaviour or impulse violence
Obsessive-compulsive behaviour
Bipolar disorder, manic episodes
Schizophrenic-like states
Personality changes
Depersonalization
Increased suspiciousness, paranoia
Hallucinations
Suicidal thoughts
Feeling as if you are losing your mind
Eating disorders, anorexia
Difficulty falling or staying asleep, too much sleep, or insomnia

Cognitive symptoms
Forgetfulness, memory loss (short or long term)
Confusion, difficulty in thinking
Difficulty with concentration, reading, or spelling
Word retrieval problems (can't remember words, stop at mid-sentence)
Dyslexia-type reversals, difficulty with writing
Problems with numbers
Difficulty with speech (slowed, slurred or stammering)
Forgetting how to perform simple task
Attention deficit problems, distractibility
Difficulty with organization and planning
Difficulty with multitasking
Slowed speed of processing
Poor school or work performance

Reproduction & sexuality
Loss of sex drive
Sexual dysfunction
Unexplained menstrual pain, irregularity
Unexplained breast pain, discharge
Extreme PMS symptoms
Endometriosis
Miscarriage, stillbirth, premature birth, neonatal death, congenital Lyme disease (passes from mother to foetus)
Testicular or pelvic pain

General well-being
Extreme fatigue, tiredness, exhaustion, poor stamina (Chronic Fatigue Syndrome)
Unexplained fevers (high or low grade)
Low body temperature
Narcolepsy, sleep apnea
Swollen glands, swollen/painful lymph nodes
Continual infections (sinus, kidney, bladder, eye, ear, etc.)
Chemical sensitivities
Symptoms seem to change, come and go; pain migrates to different body parts
Early on, experienced a "flu-like" illness, possibly not feeling well since
Exaggerated symptoms or worse hangover from alcohol
Increased motion sickness
Decreased interest in play (children)

Skin problems
Livedo reticularis
Benign tumor-like nodules
Acrodermatitis Chronica Atrophicans
Erethyma Migrans (rash)

Other organ problems
Liver inflammation
Enlarged or tender spleen
Dysfunction of the thyroid (under or over active)
Bladder & kidney problems (including bed wetting)

Got the IV appoinment

2009-04-10T19:45:00.000-07:00

I am on a break with the Ceftin for about 6 weeks trying to wake up the limes again, so we can then blast them with IV antibiotics. Don't know how long that will last - at the minimum 2 months but more likely 4-6 months. I'm still on the Azithro and Mepron for the coinfection while on the brake. Got a call yesterday that they weren't going to schedule my IV do to not having enough picc nurses in the county. Got another call today have an appointment for the IV on the 28 what a roller coaster, one minute upset not having an appointment the next the reality of it happening and just wanting to break. Humor is what keeps me going, I found when talking to someone that is unreasonable just say picc line and they run away how amazing is that!

My best friend has it too

2009-03-31T13:32:00.000-07:00

Just to let you know how prevalent Lymes is, to our surprise I just found out today that my best friend also has Lymes. She was bitten by a tick in December and at that time she described it as black tick with a red hale low around it's rump, I told her that sounded lick the deer tick and told her some of the symptoms to watch out for the next month.

About 2 week later she started with a little nausea, sore throat, sinus problems then fatigue, and she felt as if she had a little cold but it didn't seem to go away. She sounded congested but then it started to hit her jaw, ear, then having slight headaches. She went to the doctors they didn't give it much merit, after watching everything I have gone through and listing to what I have said about the disease she insisted on starting a short coarse of antibiotics - just in case. I then took her to my doctor where she explained her symptoms, they decide to test her through Igenex.

Since so many tests come back with false negative results a short coarse of antibiotics can really help before testing. The antibiotics create a die off which then shows up much better during testing. If you have a negative Lymes test but still have symptoms retesting after a coarse of antibiotics is helpful and may give you different results.

Chronic Lyme Disease does exhist

2009-03-30T20:45:00.000-07:00

The Infectious Disease Society’s (IDSA) is trying to say that there is no such thing as Chronic Lyme Disease. This would allow Insurance companies to refuse to pay for treatment of people with Lyme Disease after 30 days.

Please take a Minute and sign this Petition!!
Lyme Disease Association

Lyme - Links

2009-03-28T20:44:00.000-07:00

Lyme Disease

Symptoms

Description and Treatment Protocol
Lyme Disease
Lymes
Lyme Disease: Questionable Diagnosis and Treatment
Under our skin blog
Under Our Skin You tube trailer
Coping with the Herx reaction

Lymes & MS
Lymes & Bells Palsy

Organizations
ILADS
California Lymes Diease Association.
American Lymes Foundation
Candaian Lymes foundation

The Rash (not everyone gets this) Photos

Testing Igenex
Other testing
Stricker panel
CD57 Test

COINFECTIONS: A SYNOPSIS
LYME DISEASE COINFECTIONS
Coinfections
Babesiosis
Why you need Magnesium

My Doctors Dr. Bouch & Dr. Schweig

I feel lucky

2009-03-24T07:33:00.000-07:00

It's been almost 2 years and I feel so fortunate for whatever movement I have in my face (I feel I am doing pretty darn good) and extremely lucky to be able to blink my eye. The doctors wanted to put a gold weight in my eyelid to help me blink but I wanted to wait. What a struggle to blink - it took allot of conscious thought and focus to get the lid to move and finally after 5 months it did. I am starting to get my smile back, don't drool as much, my eye lashes are going up again, I don't have pain in my face - I feel very lucky. At this point if you met me you might not even know that much is wrong.

When I started feeling a little better

2009-03-24T07:21:00.000-07:00

When I started feeling a little better from Bells I had no idea that the underlying problem was Lymes. I tried to resume life but would still be exhausted, Bells doesn't usually cause exhaustion that is when you should have a Lymes test.

Acupuncture for Bells Palsy

2009-03-24T07:08:00.000-07:00

You can't really do much for Bells palsy, except get rest, take antiviral meds and steroids but that is still debatable. If you are on these meds if you get a Lymes test it will come back negative and not give you an accurate result. Again 60% of Bells Palsy patents have Lymes and you should only get a test where they do extensive testing 3 weeks of culture not a quickie 3-day test. Once paralyzed you need to try to stimulate the nerves again, my neurologist said I would never get better since I was past the timeline they give for recovery - 3 months. I told her at 3 months I was just starting to get a tiny tiny bit of nerve recovery. Nerve recovery can still happen up to 2 possibly 3 years. To help that along acupuncture or PT electrical stimulation is helpful.

Taking an antibiotic break

2009-03-14T19:39:00.000-07:00

My CD57 numbers have not improved in spite of my feeling better, so I will be off antibiotics for 3-6 weeks then start IV therapy - pic line at the end of April for about 4-6 months.

I have been off of antibiotics for about 4 days and am starting to feel joint pain, muscle pain in the back and night sweats etc. again. What we have been working on the Babesia more than attacking the Lymes but we thought it might have had an effect on it. So actually I have been in a holding pattern.

I have heard of Dr. Gordan but don't know much about him. I have thought about seeing him myself but am still seeing Dr Schweigh http://www.hillparkmedicalcenter.com/practitioners.html#sunjya I believe he is doing everything he can and he has spoken to Joseph J. Burrascano Jr, MD: (the granddaddy who has written the guidelines for Lymes treatment) so I feel he is on top of it. http://www.ilads.org/guidelines.html

Do I really have Lymes?

2009-03-04T23:03:00.000-08:00

Sometimes I think, maybe they were wrong...maybe I don't have Lymes / Babesia. I did have two negative tests but then I think about my symptoms in the beginning of 2007 brain fog, I felt like I couldn't complete a sentence, wondering if I was having early Alzheimer’s, why were my muscles getting so weak, loosing my hair like a shedding dog. I couldn't multi task all I could do was focus on one think at a time.

I was afraid that I couldn't teach anymore, I didn't remember how-. I didn't have the energy for the long walks on the beach or the field like I use to take, not to mention the funny joint pain, headaches (living on Advil for a couple of weeks before the onset) then came the facial palsy and sheer exhaustion, I could barely get off the couch or out of bed. All I could do was sleep for months I couldn't see very well and barely make to my acupuncturist or neurologist and back home again. So yes I guess I really have it, even with test results showing me hat I do and it is very bad it is still hard to believe. I am in the bigger picture doing really well and much better than many others with higher CD57 counts than I have - hard to figure.

Looks like an IV shunt

2009-03-03T22:49:00.000-08:00

After being on oral antibiotic for 6 months and numerous CD57 tests I am still have a reading of 19. I thought I was doing much better, had more energy and thought I might be beating this thing. But to my disappointment after my doctors appointment today the reality of having to do an IV shunt is upon me.

I guess it was a good thing that I postponed many of my out of state workshops (still not happy about it). Yesterday I thought -since I was feeling better that maybe I could contact many of the organizations to see if we could still do the workshops this year but then with the test results today everything has changed again, the problem is the unknown and not knowing what to expect.

All I think about is that I am grateful for where I am at in my recovery, I can blink my eye (which is huge- didn’t need a gold weight in my eyelid which was a possibility) I have some movement in my face again, I can finish a sentence, the headaches and muscle and joint pain is minimal, multitask better, not sleep all day, have more energy and hopefully trying to build muscle tone again.

Sorry to hear about your Lyme's

2009-02-20T20:29:00.000-08:00

Hi Judith

Yes heat is better for her the little buggers don't like heat or sweating. Lymes is very complicated and so many doctors don't seem to have a clue what they are doing. I had two negative tests and my doctors didn't diagnose it, even though it was a classic case. It was one of my students that told me of the right lab to get tested at -and even after that my doctors didn't know how to interpret the test. It has been a very long rough road of obstacles. I came down with bells palsy May 4 2007, 60% of Bells Palsy patients have Lymes the statistics show is usually take an average of 7 doctors and 22 months before it is diagnosed.

Long term antibiotic are really the only thing you can do for it, since August 2008 I am on 3 major antibiotics along with allot of immune builders, probiotics and IV's twice a week. On Christmas day 2008 I took a nose dive in which prompted me to let the workshop organizations know what was happening - I really thought I would be better by then. (But no). Since January 2009 I have had more energy than I have had in 2 1/2 years (It is very to keep down and this knocked my socks off) I thought I would never quite get my life back (but I am doing much better now).

There are some things your sister-in-law should know about if she doesn't already. I don't know how long they kept her on antibiotics, standard treatment is 4-6 weeks (which is fine if you catch it immediately and in the first stage but it progresses rapidly) the disease comes and goes so not having symptoms is not a good gage on how the disease is doing.

She should look into a "CD57 test" other wise known as a "Stricker panel" that will give her a better idea of how bad it is. normal is between 60-360 around 150 they know you have been infected mine after 5 months of antibiotics was still at 19 (not good) but for some reason I am still doing better than some others with better numbers. For More information http://www.healthcentersofamerica.com/information.cfm?id=144 http://www.anapsid.org/lyme/strickerpanel.html

http://www.youtube.com/watch?v=sxWgS0XLVqw
http://underourskin.com/blog/

She is always welcome to contact me if she would like someone to talk or would like to see if I have a little more information than she has. She does need an integrative medicine doctor that understands what to do to build the immune system while fighting the Lymes. anyway as you can see I could go on and on.. it has been a very difficult long road with doctors not really having that much information, so many people feel hopeless and depressed even myself for quite a long time if I can help in anyway let her know I am available.

Wishing you all the best
Birgit

>Subject: Sorry to hear about your Lyme's
>
>Birgit, after emailing you a few minutes earlier, I read about your problems
>with Lyme's. So, so sorry to hear about that. By now, I am hoping you are
>a little more along with your treatment. My sister-in-law was diagnosed
>with it also but I don't think she has been as sick as you although she
>seems to have had continuing health problems down through the last few
>years. She has found relief in the warmth of Florida and they live there
>now.
>And I did find out that you will be in North Carolina; that is if all goes
>well. Time will tell, as they say. Judith T.

Negative Results in Lymes testing

2009-01-28T06:33:00.000-08:00

Negative results for Lymes testing can be a result or other medications that you are taking that are making the Lymes hide in your cells, such as Antiviral medications and Steroids. This can also be a result of not having enough magnesium in your body. Stress depletes magnesium levels, as does chronic pain or illness, diarrhea, thyroid disorders, gluten intolerance, food allergy reactions, caffeine and sugar.

If your magnesium defiant
This just causes the bacteria to convert to a cyst form and wait indefinitely - while your body becomes significantly weakened and impaired from the deficiency. Increasing magnesium intake causes cyst forms to convert back to spirochetes to retrieve the magnesium, which is more readily available in the bloodstream, allowing them to be attacked by antibiotics or other treatment protocols. http://www.txldabb.org/forum6/101.html

Reasons Why A Seronegative Test Result Might Occur
Tom Grier, Lyme Alliance

1. Recent infection before immune response

2. Antibodies are in immune complexes

3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls)

4. Spirochete are deep in host tissue

5. Blebs in body fluid, no whole organisms needed for PCR

6. No spirochetes in body fluid on day of test

7. Genetic heterogeneity (300 strains in U.S.)

8. Antigenic variability

9. Surface antigens change with temperature

10. Utilization of host protease instead of microbial protease

11. Spirochete in dormancy phase

12. Recent antibiotic treatment

13. Recent anti-inflammatory treatment

14. Concomitant infection with babesia may cause immunosuppression

15. Other causes of immunosuppression

16. Lab with poor technical capability for Lyme disease

17. Lab tests not standardized for late stage disease

18. Lab tests labeled "for investigational use only"

19. CDC criteria is epidemiological, not a diagnostic criteria
http://www.anapsid.org/lyme/lymeseroneg.html

Bells Palsy what Doctors don't tell you

2009-01-28T05:50:00.000-08:00

I really didn't want to have any photos of myself during this time, especially since the doctors said that I would never recover. I only started to have a tinniest amount of improvement 3 months after I first got the Bells. These photo's were about 5 months into it. I was still horribly exhausted but was starting to think I might be able to finally blink and needed to take a photo so I could see for myself. What I was actually doing was rolling my eye up. You can see I was trying really hard to close my eye.

What doctors don't tell you or maybe they don't know is that 60% of Bells Palsy patients actually have Lyme disease.

The Bells Palsy effect is the Lyme moving into the Acute or Chronic stage. Many doctors especially out here on the West Coast don't know much about Lyme or even give it merit.

If you have Bells Palsy you need to have a good Lyme test to rule it out, even then you may not have an accurate test. I had two negative tests.

If you have Bells Palsy they may want to put you on anti viral medications or steroids. One or both of these will contribute to a negative result for a Lyme test. Standard testing is not recommend. This means the testing that you get where the results come back in three days. You need extensive testing (a FULL PANEL test) test # 6040 from Igenex http://igenex.com 800.832.3200 you can have the test sent to you and Igenex will pay for the test to be sent back return shipping the cost is approx $ 450. But other tests are "really worthless" and produce huge numbers of false negative and false positives. For more information you can do a google search.

The results from the Igenex testing take about three weeks to return, then hopefully your doctor has an idea of how to read them. Get a copy for yourself and look at the numbers if you see any ( + ) instead of a ( - ) there is something going on with you. If you see ( IND ) next to the numbers that should cause pause. Your doctor may see ( IND & - ) and say you are negative. But the (IND ) indicates you may need further testing. This means a small coarse of antibiotics then retest in a couple of weeks to allow for a possible die-off that can then be measured in testing, this may be another blood or possible urine test.