I was diagnosed w/ Lyme in August '03 ... Spent about 3 months on doxycycline. Seemed to do the trick....until now. 5 1/2 years later I feel as if I'm experiencing a relapse. trembling, painful joints, extreme fatigue, mental fog, etc. Any suggestions on the best way to handle this? A new round of doxycycline?
Thanks, Dave
Posted by TerryK (Member # 8552) on :
Welcome to lymenet!
You need to get to an ILADS LLMD (lyme literate MD) ASAP.
You may have co-infections that need to be treated. You may also not have been given enough abx to begin with. The IDSA guidelines do not provide for enough abx to get rid of lyme disease and many people end up having a relapse years later because the spirochete just hibernates in cystic form until it's safe to come out a wreak havok.
Most LLMD's do a differential diagnosis, looking for not only lyme but other reasons for your symptoms.
Go to the seeking doctor section on this website and put your State in the subject line and ask for recommendations for an LLMD in your area.
Added: co-infections are infections that are passed by the tick at the time that one is infected with lyme. They often require different types of treatment. 2 very common co-infections are babesia and bartonella. Babesia is a protozoan infection and requires different medication than lyme.
If you have an untreated co-infection, it is very difficult to get rid of lyme even if you have enough abx.
Look here for info on ILADS www.ilads.org Wishing you the best, Terry
Posted by scared08 (Member # 14695) on :
Hi Dave,
Boy, I am sorry that you have relapsed!! It's frusterating to be treated and think the infection is gone only to have it rear it's ugly head again!!!
Many of us have been through this! Terry gave you excellant advice, please take it and get to a LLMD!
I really wanted to comment on the fact that you recieved treatment even longer than IDSA Giude Lines. Then 5 years later you are ill again!!!
They firmly believe that this doesn't happen, however you are a perfect example that it does happen!!
I don't know if you've watched the movie "Under Our Skin" yet, but I highly reccomend it!
The one thing that some, including me, had wished is that this was talked about along with documented cases! I'm so sorry for this but you are a perfect example of what the IDAS SWEARS CANNOT HAPPEN!
I am trying to put together as many cases as I can such as yours to e-mail Dr. Oz with in hopes that Oprarh and Dr. Oz will do a show on this.
He is very interested if there is anyone out there that have Chronic Lyme, or still infected after recieving treatment!!!
I don't know if you've read about this but there are posts all over LymeNet about it.
Would you mind posting your entire history???? What were your first symptoms, did you have a + W.B. or another test for Lyme, your detailed treatment and all that you've experenced to date.
I SINCERELY APOLOGIZE IF I HAVE SOUNDED INSENSATIVE TO WHAT YOUR GOING THROUGH!!!! WHAT HAS HAPPENED TO YOU BREAKS MY HEART!!! I PRAY THAT YOU WILL TAKE TERRY'S ADVICE A.S.A.P. AND WILL HAVE A QUICK RECOVERY!!!!
I'm glad that you found this forum as the people on here are WONDERFUL!!! You will always have support here!!!
With many blessings,
Janet
Posted by djoxvt (Member # 18451) on :
In July '03 I started waking up w/ night sweats, painful knees & elbows, complete mental fog where concentration was nearly impossible. Sunlight hurt. I would sleep 12 hours a day and still fell extremely exhausted. I went to the doctor multiple times and they couldn't find anything wrong with me. One doctor even said I should see a psychiatrist because she thought I was crazy. Even towards the end of Aug '03 about 1-2 months later, I tested positive for a "mono" like illness, and with my symptoms one doctor determined it was lyme. I started on a 3 month prescription of antibiotics and felt good by Christmas of '03.
Around March '05 I swore I was suffering a relapse but it went away and a few days/week later I felt okay again.
Then starting last Sunday, I was under a lot of stress and my immune system was down from having a long weekend in Tampa. All this week, I've slept till 12, I'm in bed by 8. My hands, elbows, knees, back, neck hurt. I have zero energy. I went to the ER last night, and they did a blood test for lyme which I have yet to receive. The ER doctor said I'm probably just suffering from a high level of stress which can mimic many things and do bad things to the body. I guess we'll find out Posted by scared08 (Member # 14695) on :
Hi Dave,
Again I'm sorry!!!!! I do feel your pain!! Thank you for posting your history and I'm glad that you did because the symptoms you started with really sounds like Babesia!!!!
Unfortunitaly I really doubt that the E.R. Dr. used the correct lab for your Lyme testing. You really need to be tested through IgeneX or Clogen labs for more accurate results!!!
PLEASE-----Can you get to a LLMD????? You REALLY need too!!! You need to be tested through the correct labs and for co-infections! The Doxy. may have calmed things down for you but to the best of my knowledge, it doesn't work for Babesia with is an UGLY co-infection!
I hate to hear that the ER Dr. referred to stress and how that can cause your sx. Yes, it can cause some of them but not all of them!!
However, when you've been through a lot of stess or sometimes a heavy, very attictive and tiring time (vacation, etc..), it can lower your immune systom enough for any infection that's been in hybernation will flare up!!
Dave, please don't accept the Lyme results from the Hospital unless they're +, get to an LLMD.
Please keep me posted and in the mean time, REST, take good supplements (look at Dr. Burriscano's list) and take care of yourself!!!!
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