New here and need suggestions

Hello all! I have been sick for 22 months. I have been through 8 pcm, 4 neurologists, 3 rheumatologists. My issues began after edging my yard, the next day I started having pains in my hands, then legs and then throughout the body to where I needed assistance getting dressed.

Mind you, I was 32 years old, working full-time and healthy. Present day I have 3 pages of symptoms. I now stutter; my face will twitch, feel like its on fire and then droops. I can no longer carry a normal conversation in person. I cannot walk more than 30 ft without being in tears, often times I can't move off of my couch due to the horrible fatigue even with the adderall I was prescribed for it. These are just a few of my many symptoms.

Of course, I have been diagnosed with fibro (at the very beginning), chronic migraines ( which is what "causes" the stroke like activity.) After digging through the internet I have compared my symptoms with the lyme and co infections, and every one of my symptoms are on either the lyme or co infections.

I have now found a new pcm and neurologist that both believe in lyme since they have had family members or have current patients in treatment. Recently, my neuro did the lyme antibody, and it came back at .53. Which of course is negative, but she called and said she found it to be slightly elevated, I just had my second western blot done, and this time the band IGg41 showed positive. I have no clue what this means, but this is the only thing that has popped up in 21 months, other than vitamin b12, d3, and folate deficiency.

I was treated with 30 days of doxy about 3 months ago, and last year I was hospitalized with cellulitis and received vancomycin by iv for 7 days; this was the only time I got relief and swore I was cured, until a week later whatever I have has came back with a vengeance.

I know I need to seek a LLMD, but I figured while I have 2 dr's willing to test me for anything and everything, is there another test that I should request that could possibly confirm Lyme? Furthermore, I would like information on a LLMD in either the Chicago area or St Louis area. I have contacted a few organizations, but did not receive information back. Could someone possibly guide me in the right direction for a LLMD and further tests that can be ran?
Thank You,
Dawn

 Good morning Dawn.

 your story sounds just like mine and many others.

 I'm not feeling very good, and hav'nt for a few days. (I will be joking and goofing off when I am)

 I just wanted you to feel welcome.

I too had only band 41 on the IgG positive and none on the IgM with my first Western blot even though I was positive for Anaplasma and Myco. I was bitten twice and really knew I had Lyme regardless of the test results but decided to do a WB through IGenex just to confirm.

Lo and behold I came up positive for many Lyme-specific bands on the IgM where I had none through other labs. My antibody score was 1.01 which is equivocal so obviously that's a very unreliable test for diagnosing Lyme.

I would suggest the IGenex Western Blot if you really want a confirmation though you may not even get a clear answer as it all depends on the immune sysytem and its reaction to the bacteria. The general rule is the sicker you are the less likely it is to show up on the WB.

That may have some validity as my symptoms are pretty mild compared to most yet had a very clear positive test through the only lab I would ever trust to diagnose Lyme.

Hey brggs79,

Sounds like lyme, but when you said you have a vit b12, folat and d3 deficiency, those are 3 vitamins directly involved in the MTHFR gene mutation. That mutation can be responsible for hundreds of different symptoms, migraines, neuropathy, seizures, ADD, he list is endless. You can be assymptomatic your entire life and all of a sudden all the symptoms appear when when gets ill with lyme or something similar. This gene makes it difficult to detox because your body can't produce antioxidents effectively because of a lack of folate and b12! And the reason you don't have enough folate or b12 is because you can't turn folic acid into folate or b12 into an active form of b12, called methylcobalamin. Its an easy fix, taking active folate and b12, also adding active b6. But it needs to be done slowly.

I can't urge you enough to get this test. I have been treating for lyme for 3 years only to find out I have this mutation. It would have been a very different treatment knowing this info 3 yr ago. It is a common mutation. It is estimated that 30% of people have it.

Oh, the mutations responsible for it are MTHFR, particularly 2 - c667t and A1298C. It's a simple blood test.

Sincerely,
Samantha

Sorry that you have been through so much. It definitely sounds like lyme disease. Keep in mind that LD is a clinical diagnosis. A good LLMD will diagnose you based on clinical symptoms and by ruling out other conditions.

Was the western blot through IGENIX? If not, see if your neurologist or PCP will sign-off on an IGENIX western blot. You can order the kit through IGENIX,but you need a drs. signature. IGENIX is more thorough and accurate.

Also, you can go ahead and start detoxing. There is more info. about that on the "new to lyme" thread.

If you post a new thread with the title "looking for a LLMD in the Chicago or St. Louis area", you will probably get some responses with LLMD recommendations.

I know of a wonderful LLMD in the Indianapolis, IN area. If you would be able to travel there and would like that info., let me know.