Sorry to hear about your Lyme's

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

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

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.