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remicade and lyme disease
Has anyone here ever had a doctor prescribe Remicade and what was your reaction. I just read a report from Emory Health Care from an internist that my daughter saw and they think she could have lyme due to her Elisa test. They are waiting on her Western Blot. Her local Infectious Disease Doc ran one of those earlier and ruled it out even though she had some positives. She has been diagnosed with sarcoidosis hence the Remicade treatment. From what i have read Remicade can be deadly to lymies. Any help would be appreciated.
Not a problem, I had the same issue when I first came here, not sure how the site works ... and I had Lyme brain, so I was a mess anyway.
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I'm sorry. I guess I posted in the wrong place? Not quite sure how the forum works yet.
Thank you Jackie. Mine is kinda of a long story. Readers Digest version-I was misdiagnosed for 15years before I was fortunate enough to find and receive treatment by a wonderful doctor in central TX. That ws 5 years ago and I credit this man for saving my life. I was on IV Ceftriaxone for 9 months then another 3months of oral antibiotics. My CD57 reached 280,(it was 40 when I was diagnosed), I felt and looked better than I had in years. Then, a year ago I started having oh so familiar symptoms. Wham! Once again showing positive for Lyme (I know, right?) And then I was devastated to find out that my doctor had been disbarred by the AMA for treating Lyme patients. I found another doctor by word of mouth who assured me she could help me. She seemed very confident. She had a plan. She used the right lab-IGenx. She asked the right questions. My CD57 came in at 85. That was 21MAR2011. I started out on zithromax for 4 months. Then did 3 days of Tinidazole. Then Doxycyclomine for 3 weeks? then back to zithromax.......now Ceftin. All the while my CD57 is dropping. I feel like she's all over the place. In the meantime I'm getting worse. Not Herxing. As a matter of fact, not a single herx yet. Which you know is not a good sign. My CD57 has dropped to 56 now. I don't know what to do.
Sorry. I'm not a negative person normally. (Aren't you glad you got the Readers Digest version?) GLG
Sorry. I'm not a negative person normally. (Aren't you glad you got the Readers Digest version?) GLG
Thank you so much for your comment. I am very sorry this happened to you, and hope that you are getting better now. I hope you have found a Lyme specialist who can help. Keep us posted, okay? Take care --
I am not a health care professional but I can give you a first hand account of Remicade and Lyme. Before I was diagnosed with Lyme, one of the MANY things--as is the norm--I was diagnosed with was RA. So she put me on Remicade. Not only did my symptoms not improve with every treatment I got worse and worse. Every month when I swore I would not take another infusion. Every month she would assure me I was getting better and that if I stopped the infusions I would end up in a wheelchair or worse. I was so sick I had to take a disability retirement from work. My skin was ashen, my body was swollen, I couldn't think straight. I was in excruciating pain. I ended up having to move across the country so my daughters could help with my care since my husband traveled in his job.
The answer to your question is--Steroids cause the Lyme spirochetes to EXPLODE in your system. I feel certain that had I continued on with the Remicade one more treatment I would have died.
The answer to your question is--Steroids cause the Lyme spirochetes to EXPLODE in your system. I feel certain that had I continued on with the Remicade one more treatment I would have died.
Thanks for your message back -- I'm glad you are finding some resources nearby. That's exactly what I would do -- best wishes and good thoughts to you and yours --
We live fairly close to Atlanta. I have spoken to a couple of people recently who have been helpful with providing names of some local doctors who can help with lyme. I appreciate your response and if I need additional help with names I will let you know. Thanks. .
Welcome. Sorry to hear about your daughter's illness.
I am not medically trained, and what I just read about Remicade is unclear to me whether it is a steroid or has immune system-suppressive activity. If you daughter has Lyme, then taking anything that suppresses the immune system is, to my understanding, a bad thing to do, because Lyme is a bacterial infection, and if the immune system is suppressed, the infection just runs wild.
To my understanding, sarcoidosis is an inflammatory condition of unknown cause, but I have also read that there may be some as-yet link between sarcoid and Lyme, in some preliminary research. Don't know.
In your situation, I would take my child to a Lyme specialist for diagnosis and treatment *now*. Infectious disease MDs are, sadly, some of the docs most resistant to the idea of Lyme as something to be taken seriously. You might take your daughter back to the doc at Emory who at least considered the possibility of Lyme or ask him/her for a referral to a Lyme-friendly doc.
Like I said, I'm not medically trained, but I personally would (1) not treat with Remicade and (2) find a Lyme specialist for a work up. Take copies of the tests from the Emory internist with you, bec. it might be of interest to the Lyme doc.
If you need help finding a doc, let us know and we'll see what we can dig up. Are you near Atlanta, or somewhere else?
I am not medically trained, and what I just read about Remicade is unclear to me whether it is a steroid or has immune system-suppressive activity. If you daughter has Lyme, then taking anything that suppresses the immune system is, to my understanding, a bad thing to do, because Lyme is a bacterial infection, and if the immune system is suppressed, the infection just runs wild.
To my understanding, sarcoidosis is an inflammatory condition of unknown cause, but I have also read that there may be some as-yet link between sarcoid and Lyme, in some preliminary research. Don't know.
In your situation, I would take my child to a Lyme specialist for diagnosis and treatment *now*. Infectious disease MDs are, sadly, some of the docs most resistant to the idea of Lyme as something to be taken seriously. You might take your daughter back to the doc at Emory who at least considered the possibility of Lyme or ask him/her for a referral to a Lyme-friendly doc.
Like I said, I'm not medically trained, but I personally would (1) not treat with Remicade and (2) find a Lyme specialist for a work up. Take copies of the tests from the Emory internist with you, bec. it might be of interest to the Lyme doc.
If you need help finding a doc, let us know and we'll see what we can dig up. Are you near Atlanta, or somewhere else?
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