Saturday, November 14, 2009
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.
Tuesday, November 10, 2009
Thursday, October 22, 2009
Saturday, October 17, 2009
Thursday, October 15, 2009
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.
Wednesday, October 7, 2009
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.
Tuesday, September 29, 2009
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.
Friday, September 18, 2009
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.
Saturday, August 29, 2009
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
Monday, August 17, 2009
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.
Saturday, August 8, 2009
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.
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.
Sunday, June 14, 2009
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.
Monday, June 1, 2009
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.
Saturday, May 23, 2009
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.
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.
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
Also suggested is to watch the Under Our Skin trailer or visit their blog available on links
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!
Thursday, May 7, 2009
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
Tuesday, April 28, 2009
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)
Saturday, April 11, 2009
Pressure in the head
Tingling of nose, cheek, face
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
Hoarseness or vocal cord problems
Increase in allergy symptoms
Change in smell, taste; smell or taste hallucinations
Unexplained hair loss
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
Wandering or lazy eye
Swelling around eyes
Conjunctivitis or "pink eye"
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
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
Poor muscle coordination
Loss of muscle tone
Respiratory & circulatory systems
Shortness of breath, can't get full/satisfying breath
Chest pain or rib soreness
Night sweats, unexplained chills
Heart palpitations, extra beats or pulse skips (arrhythmia)
Heart blockage, murmur, valve prolapsed, heart attack
Swelling or enlargement of heart
Diminished exercise tolerance
Burning or stabbing sensations in the body
or partial paralysis
Weakness or paralysis of limbs
Tremors or unexplained shaking
Loss of reflexes
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)
Mood swings, irritability
Anxiety, panic attacks
Overemotional reactions, crying easily
Disorientation: getting lost or going to the wrong place
Aggressive behaviour or impulse violence
Bipolar disorder, manic episodes
Increased suspiciousness, paranoia
Feeling as if you are losing your mind
Eating disorders, anorexia
Difficulty falling or staying asleep, too much sleep, or insomnia
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
Unexplained menstrual pain, irregularity
Unexplained breast pain, discharge
Extreme PMS symptoms
Miscarriage, stillbirth, premature birth, neonatal death, congenital Lyme disease (passes from mother to foetus)
Testicular or pelvic pain
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.)
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)
Benign tumor-like nodules
Acrodermatitis Chronica Atrophicans
Erethyma Migrans (rash)
Other organ problems
Enlarged or tender spleen
Dysfunction of the thyroid (under or over active)
Bladder & kidney problems (including bed wetting)
Friday, April 10, 2009
Tuesday, March 31, 2009
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.
Monday, March 30, 2009
Please take a Minute and sign this Petition!!
Lyme Disease Association
Saturday, March 28, 2009
Description and Treatment Protocol
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
California Lymes Diease Association.
American Lymes Foundation
Candaian Lymes foundation
The Rash (not everyone gets this) Photos
COINFECTIONS: A SYNOPSIS
LYME DISEASE COINFECTIONS
Why you need Magnesium
My Doctors Dr. Bouch & Dr. Schweig
Tuesday, March 24, 2009
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.
Saturday, March 14, 2009
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
Wednesday, March 4, 2009
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.
Tuesday, March 3, 2009
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.
Friday, February 20, 2009
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
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
>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
>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.
Wednesday, January 28, 2009
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
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.