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Lyme Disease Message Board

Lyme Disease Board Index

First, i would like to thank TICKER for taking the time to get so much important information out there to people. I can see a number of people have already benefited from it. Lyme is truly 'the great imitator'. I have known so many people who have been misdiagnosed with MS and a host of other autoimmune diseases before finding out they had Lyme. Please read Tickers symptom list. If you have any of them, please seek THE PROPER TYPE OF DOCTOR. My personal suggestion is to start with an infectious disease specialist and get tested not only for Lyme but the co-infections on Tickers list as well. If positive, u can stay with them, but preferably seek a Lyme Specialist if one is near you. Also, make sure you're on the medicine LONG enough-big mistake that many docs make. A few weeks usually doesn't cut it.

I originally went to my regular doctor (GP) in 2002 with many of the symptoms listed (minus the rash). He finally diagnosed me with Lyme & treated me with doxycycline for 3 weeks (ideally, it should be at least 4-6 weeks). I was re-tested, and told I was fine. I went home & thought nothing more of it.

A year later (after never feeling 100%), I was severe again, and went to a specialist. He got the lab results from my other doc and said the titers had still been high enough that I should have continued the doxy. I still had it all that time! And who's to think the doc we go to for everything wouldn't know what they're talking about? Why wouldn't they refer you to a specialist? But they can't know everything and that's why there are specialists out there for diseases like this. Because of my new doc, I also found out I had Ehrlichiosis & Bartonella. I have talked to more than a few people that experienced the same thing so [I]please seek proper medical attention[/I].

I had been treated with numerous anti-biotics with little success until I got the IV (Rocephin), which I did for 8 weeks. After the Rochephin i felt SO much better (Monicarenea, I would highly recommend the IV if nothing else is working, i know people who have had lasting success with this). Unfortunately, after 6 mo., I have relapsed. My doc is coming up empty on ideas after 2 months of oral anti-biotic treatment with no success. I am at my wits end right now, suffering from neck and back pain, headaches, fatigue, joint pain, and depression. I am not responding to anti-biotics anymore (which happens from taking them too long, not that we have much of a choice). If anyone has any input, let me know...and i'll keep you posted if I have success. I am in the process of trying to find a good Lyme specialist in my area, Northwest NJ (warren cty.)

One last interesting tidbit from a Newsweek article last week; a woman who suffered from Lyme 11 yrs, went to a Dr. Katz in Orange, CT . She had Lyme 5 yrs before it was diagnosed & 6 yrs of failed antibiotic treatment. This doctor used an experimental regimen of intravenous immunoglobulins (naturally occuring antibodies) to tame her overactive immune system & within a month she felt better. I'll have to run that past the doc.

Sorry this is so long, but as far as I'm concerned, the more info. we share and the better informed we become, the bigger the benefit. Let me know if you have any Q's and Good luck all!
Ticker, I truly appreciate all of the info you have provided. My hubby became ill in August 2003 (103 degree fever, swollen glands, achy muscles, joint pain). He was hospitalized for a week and tested for everything imaginable. The infectious disease specialist diagnosed him with LD in spite of negative tests and he was given Rocephin via IV for 30 days. He felt better (never 100%) after that but in Spring of this year began experiencing extreme joint pain and fatigue and was diagnosed with FM/CFS. I think he has Post Lyme Syndrome but the specialist we were seeing does not believe in PLS or additional antibiotic treatment. His most recent Western Blot shows 1 band (45) and his Babesia microti IgG test came up as <1.64. The specialist says these test are negative - is that true? Any advice you can provide would be greatly appreciated.

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