Lyme Disease

    I'm hoping someone can answer a question for me. I got Lyme back in 1996, I'm guessing, started having knee swell ups. Never had any other symptoms. In 2001 went to Dr. and had blood work. Soon as I went on Doxycicline I couldn't walk, knocked me down. Stayed in house all winter and came out in spring, knee swelled up, went to Dr. and he told me I had a new Lyme infection. Went through Doxycicline again, 400 mg./ day for 21 days, couldn't walk again. Now my problem. I have never been checked for co-infections, and back when all this started, I could not find any information on Lyme, very little, I watched Under our Skin and that was my life. I was sent to many DR.s and finally to a Rheumatoligist and have been seeing this one for 4 years now. I have been told that this is what Lyme leaves you with and I have been on Embrel, Humira, and nothing has worked. My hands are swollen every morning, my legs are swollen all the time, I suffer from what I call Lyme Disease indications. I am having a major problem with cronic fatige, along with other problems. I have been trying to find a LLMD in my area but, I just can't seem to get an app. with one, I have heard all the excuse's. Now my Rheumatiod arthritis Dr. wants me to try Remicade, the other ones, like Embrell and Humira didn't do a darn thing, should I try the Remicade? Or should I keep trying to see a LLMD? I now life on SSDI and when I got sick, I was running my own carpentry business and now I life on food stamps and sleep all day, like 16 to 20 hours a day, I feel pretty useless in life now. Sorry this is so long but, my girlfriend left me, and I have no family that will be supportive, I just want to get better. Thanks for any help you can give me.

Thanks Gary, you know, I don't remember as the first test was done at the local hosiptal in 2001, and the second was done at a dr. office where I had my knee drained in 2002. I believe it was a western blot test but, I don't know if igenex did the test, I was trying to get information back in those days but, every Dr. I spoke to said the same thing, 21 days of doxycicline was the necessary steps to take. The funny thing is I was referred to a  Rheumatoligist in Lyme Ct.  in 2001 and I thought , wow that would be a great place to go, Lyme CT. This Dr. put me on steriods and darn near killed me, or at least I thought I was dieing, he yelled at me at the end of a year and said there was no such thing as Long Term Lyme!!!! I left that Dr. and have gone on to try to find LLmd.....next to impossible as I stated before but, I will keep trying, I went from 200 Lbs to 400 lbs from that Dr. in Lyme Ct. in one year. I had a feeling Remicade was not the answer, Thank you Gary for getting back to me...I was hoping there was still hope for me!!!

   

   Thanks Traveler, I have done all those things you have mentioned. I've joined and read and got Dr.s names, most of the doctors I recieved are too far away for me to travel and believe it or not, I called a doctor in Ct. who told me I lived too far away, how's that for an excuse. Anyway, living on SSDI makes it hard to travel or get a room to see doctors. I was more intrested in knowing if I was wasting my time getting rheumatoid arthritis medication, as I have read almost every post on this site and I don't think anyone has ever mentioned being treated with Embrel or Humira!!! I had a feeling because it's a waste of time and money, as you can see, I have never been sick in my life and I guess my down fall is that I have always been healthy!!! Thank you for answering my question and being there and supporting all of us and answering my questions. Bri

 

    Thanks Traveler, That's really good to know, I shall keep on my search. it's too bad being in this position, trying to find some one who will help you. Thank you for getting back to me so fast. Brian

I so feel for you. But do yourself a favor and do a lot of research. As you may know, many in the medical profession do not believe in chronic lyme while those of us that have it will tell you that if treatment helps after years of symptoms, then it most certainly exist. An LLMD is certainly the way to go and you may find there is one closer than you think. Also, there are some products that act as natural antibiotics such as cat's claw and supplements that may really help you feel better such as magnesium. Have you read Dr. Burrascano's guidelines? They are very very helpful. If he ever comes to your area, try and get to see him. He is quite an interesting and concerned caring person and doctor. Hope you feel better soon.