Lyme is often not taken seriously

Seems like doctors would rather say you don't have Lyme even if you have it...The rash could be staring them in the face and they don't recognize it. Your test could be positive and they could tell you it's negative. They could also say you had Lyme but don't have it anymore. I've been told all those things. I definitely had an oval expanding rash on my chest and 2 rounded destictive Lyme rashes on my legs. I had a Positive IGM test from Quest labs on 3 occasions for the first 6 months...A big problem is the CDC/ASPHLD states the IGM should only be used during the first month. This is because IGM usually converts to IGG in about 2 months and IGM disappears in 6 months. This is not necessarily the case with Lyme... More IGM blots may be positive with an active, persistent or chronic infection. Everytime Borrelia reproduce it stimulates IGM and sometimes IGM is the only antibody detected. The ILADS position paper states that IGM is a useful predictor at ALL stages of disease...Lyme should be a clinical diagnosis and treated accordingly... Pamela Weintraub wrote a wonderful book "Cure Unknown inside the Lyme Epidemic." Lyme may have been overdiagnosed in the past but now I believe it's underdiagnosed. I have found that many doctors have an attitude about Lyme and don't take it seriously... This needs to change! Doctors need more education, Lyme needs to be treated ASAP and more research needs to be done for accurate testing and treatment so a cure can be found.

Early identification of Lyme rash

News anchor Donna Hamilton from WBALTV 11 Baltimore had a very similar oval rash in July of O9.... She was treated with 4 weeks of antibiotics and is fine. The sooner the rash is identified and treated the better. Unfortunately not all doctors know what the rash looks like and early identification is SO important... When a Lyme rash is present it MUST be treated right away! A delay in treatment can result in a persistent or chronic condition...

4 more LLMD's

After I saw the first LLMD and was not pleased I decided to go for other opinions. I still had all 3 bands of IGM (23, 39 and 41) and my legs continued to be my biggest problem. Throughout my Lyme ordeal I was basically on antibiotics for a total of 2 months.... I went for several opinions and decided what was best for me.... I couldn't see a LLMD for a while so I asked my regular doctor for zithro and tried that for several weeks at a relatively low dose. The zithro didn't do anything for the legs so I stopped taking it. As a matter of fact I believe the zithro made me feel like I was having a heart attack.... Not long after I stopped taking zithro my chest felt like it was being crushed, very scary feeling. This lasted for ~ 1/2 hour and I was thinking about going to the hospital but decided if it was due to Lyme or zithro it would go away. I did see another internist the following week and he recommended a sed rate, crp and did an ecg on my heart that showed sinus tachycardia. We talked about Lyme and he said all those Lyme doctors are quacks... Didn't you hear about the one that killed somebody on the mainline? I didn't like his attitude so decided I'd go back to my regular doctor for the labs and follow up... My sed rate and crp were normal but the Elisa and IGM continued to be positive. My IGM was still positive 5 months after the rash and my legs were still on fire. To me this meant I had a persitent infection....

In Oct of 08 I went to one of the best neurologist and LLMD's in NYC.... Insurance did not cover the $$ I paid for his service.... The findings on his report were consistent with Lyme neuroborreliosis with neuropathy, dysautonomia, hypercholesterolemia, cardiac arrhythmia and brisk reflexes of yet determined significance. He recommended:
1. Repeat EMG and nerve conduction studies of the legs
2. Epideral nerve fiber studies of the thigh and calf
3. Blood for quantitative immonoglobulins, IFE, CLq, SSA, SSB,
Sm,RNP,dsDNA,ANA,ANCA, thyroglobulina nd thyroid microsomes, B12,
folate, C3,C4,gliadin, cardiolipin, dsDNA and other tick borne
disease serologies.
4. Blood to Stony Brook lyme labs and serology.
5. Blood to Mayo Clinic for paraneoplastic autonomic serology
6. Contrast MRI of the brain and spinal cord
7. Brain Spect
8. Consideration of Lumbar puncture for CSF analysis and lyme serology

All these test would be thousands more not covered by insurance. I had to decide what to do... and decided to get another opinion....

The next Lyme friendly doctor I saw was covered under insurance and he recommended more antibiotics (CEFTIN). He said I wasn't on antibiotics long enough.

The next LLMD recommended high doses of (AMOXICILLIN). This doctor was very caring and in practice for many years taking care of the Amish.

Finally the last LLMD I saw recommended Ceftin and Zithro.

I wasn't sure what to do but I was beginning to feel better. The cold winter weather seemed to gradually improve my burning legs (paresthesia)... As the legs got better my ankles started to hurt and swelled up... I did not have swollen knees but sure had and still have swollen ankles. The last LLMD was also into natural hormone replacement and he put me on progesterone which I tried for a short time.

I felt like my body was healing on it's own and decided not to take anymore antibiotics. The last labs I had taken 4/30/09 continued to be positive for IGM 23 and 41. I was also negative for bart and babs. Everything appeared to be normal except for an elevated cholesterol... Was I cured of Lyme? Not sure.... My ankles are still swollen and I have monthly headaches and insomnia...

The last lyme labs I had taken from Quest 6/14/10 continue to reveal IGM 23 and IGG bands 41 and 30 ... IGM band 23 has been present for 2 years which I find interesting and now band 30 is present in IGG.... I will continue to monitor my labs prn...