Sunday, November 14, 2010

It's been two months since I got the word

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 :)

Saturday, September 11, 2010

I'm In Remission

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 !!!

Monday, August 9, 2010

How it Started

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 :)

Thursday, August 5, 2010

Tick''em off your list - Borders Today

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.

Wednesday, August 4, 2010

Informed Patient: Steps to Fight Ticks in the Yard -

Informed Patient: Steps to Fight Ticks in the Yard -

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

Thursday, July 29, 2010

2010 Testing results

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.

Thursday, July 1, 2010

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

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

Tuesday, June 22, 2010

Feeling low

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.

Friday, June 18, 2010

Low CD57

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

What is Normal Now?

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

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)

Thursday, June 10, 2010

My face

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

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?.

Friday, May 28, 2010

Osteopath and Bells Palsy

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.

Thursday, May 27, 2010

Where do the ones you love go?

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.

Wednesday, May 26, 2010

Bells Palsy is a Symptom of LYME

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.

Monday, May 3, 2010

Three years tomorrow, May 4

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.

Tuesday, April 6, 2010

Wavy hair on one side of my head

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.