A 58 year old woman came for a Lyme consult 10 months ago. She had been diagnosed with psoriasis and rheumatoid arthritis. She suffered with joint pains affecting her knees, ankles, hands and elbows. In addition she suffered with chronic fatigue headaches visual changes, neuropathy, forgetfulness, impaired cognitive processing and night sweats. She was interested in exploring an alternative explanation of her symptoms because her daughter had been diagnosed with Lyme disease. Her rheumatologist had prescribed Methotrexate, Suflasalazine and Celebrex. Baseline laboratory studies showed a very borderline ANA 125, a normal rheumatoid factor and an elevated CRP of 11.5. She has consistently tested negative for Lyme disease. She has had positive IgG and IgM 41 bands and IND 31 and 39 IgG bands per Igenex.
She has been treated for Lyme disease and Babesia based on clinical symptoms. In November her CRP was 3.8. Another set of labs was ordered today.
Today, 10 months later- she has no joint pain. Her memory is back to normal. The sweats are gone. Minimal neuropathy remains. Her psoriasis has resolved. She takes Plaquenil and is off Methrotrexate and Sulfasalzine. Incidentally, I have observed clearing of psoriasis in several other patients treated for Lyme disease.
What has she been on? Biaxin, Zithromax, Plaquenil, Mepron and now Minocin. She is allergic to penicillin.
For the sake of argument, let us posit the standard rheumatology opinion. She never had Lyme disease. Antibiotics helped her because of non specific anti-inflammatory properties and modification of cytokine responses.
The patient came to me on a powerful immune suppressing drug, Methotrexate, which is known to have serious complications, including cancer. And besides, the drug wasn't helping her. She improved with antibiotics. Rheumatologists have argued with me, claiming that long term antibiotic therapy is dangerous. Millions of teenagers take chronic antibiotic therapy for acne. I fail to see any merit to these arguments.
OK- LLMDS are wrong. It is not Lyme disease. It is something else. It doesn't matter what you call it. It works and it is much safer than "standard" therapy.
Apparently ego trumps the best interest of the patient.
The theory that it is the aniinflammatory effects of the antibiotics that makes them better does not hold much water in these patients. They start out on heavy duty antiinflammatories/
ReplyDeleteimmunosuppressives- steroids, nsaids, even methotrexate. They are sick on these. Antibiotics have mild antiinflammatory and immune modifying properties in comparison to these other drugs. Yet they improve. There is no other explanation that makes any sense other than actual antibiotic effects. Does it matter WHAT you are treating? Maybe we should just give it a new name - then can we treat it without the witch hunt?
When I was diagnosed with Lyme in June, I was sent to a Rheumy by my primary. I knew little about Lyme. He knew even less.
ReplyDeleteHe claimed to be baffled about my symptoms of continued joint pain, sleep disturbances, profound exhaustion, sweats, etc. He said that the 4 weeks of antibiotics "always" cured Lyme. He documented in my chart that none of my joints were swollen, including my knees.......and he never had me get undressed. He never saw or touched my swollen, sore knees. he told me that I might never have had Lyme because I didn't have all of the "necessary bands".
He then diagnosed me, triumphantly with Psoriatic Arthritis and Sleep Apnea. He wanted to put me on strong doses of steroids and send me for sleep studies.He thought I needed CPAP for sleep disturbances that had, consequently, started only 4 weeks early when diagnosed with Lyme.
Luckily,I refused both treatments, walked out and requested my medical records.
He actually frightened me.
I know you posted this a long time ago but it heartened me so very much. I just started Lyme treatments with an LLMD after months of Lyme symptoms and negative tests for Lyme. This gave me hope it would help me after so much failure (and getting so disabled I can barely walk) even though my tests are negative. Thank you for helping patients like me.
ReplyDeleteI had over 30 Lymes tests before I showed a positive. I spent three years on 1500 mg of Doxy. for three months on three months off. I could tolerate the oral 500 mg dosages three times a day, so they gave me oral dosages that were supposed to be equivalent to an inter-venous treatment.
ReplyDeleteThe same doctor who prescribed this regime (mid nineties) I saw again around 2010 because I had been re-bitten and was showing symptoms again. This doctor denied ever giving me 1500 mg/day, and wanted to give me the AMA proscribed 200 mg/10 day prophylactic treatment. He later told me I was not crazy, but he could lose his license if anyone suspected he had been giving out that high a dosage. It was like living in the twilight zone.