I'm brand new to LymeNet and the discussions, but have been reading up as much as possible. Please forgive me for any lapses in etiquette!
I received a clinical diagnosis of Lyme 4 days ago based on: 1 week camping in an LD-endemic area; followed by 1 week of apparent good health; then 1 week of very severe "flu" incl aches, pains, fatigue, sore throat, dry cough, headache, eye pain; then 2 weeks of crippling, excruciating knee and back pain, persistent low-grade fever, and fatigue. No known tick bite or EM.
Only test result: negative Western Blot IgG 1.5 weeks ago (2-3 weeks into possible infection). Commercial laboratory, and all I know is "negative."
Awaiting: WB IgM and ELISA for Lyme, from same commercial laboratory. (And Bab and Ehrl, I think.)
PCP put me on 7 days of Doxy, 100 mg, 2/day, 4 days ago. (I know now this is too short; I will talk to her but doubt I can persuade her to give more than 21 days.)
In the 3-4 days leading up to the diagnosis last week, my pain and fever were letting up a bit and I thought I'd turned a corner. In the last half week, however, the pain has gotten 10x worse, and I've been running a persistent 99.2-100.2 fever in the afternoons. I haven't been able to leave the house. (This started just prior to taking doxy and has continued while on the doxy.)
Anyway, I'm giving all this info for this one reason - assuming others are in agreement that this is LD, could anyone please give me their opinion about how early we're catching this awful awful disease? Am I too late? Potentially 5 weeks in? I'm simply terrified that I'll be this debilitated forever because we didn't catch it soon enough. Please, any experiences, anecdotes, advice, encouragement, or even brutally honest opinion about the likelihood of recurrence, would be appreciated.
Thanks a lot in advance, everyone - I'm trusting in your collective wisdom. You're all very brave and strong, and I wish you good health.
LMI
Posted by kimmie (Member # 25547) on :
Well if you are 5 weeks into, that is probably considered disseminated, but not chronic according to Dr B. You are ahead of the game, but 200mg doxy/day is too low and treatment needs to be much longer so you avoid what all of us are dealing with.
If your western blot is negative, it means nothing. I had a tick bite and positive elisa, but my western blot did not turn positive until 4 months later and that was only IGM. The CDC's criteria are insane...I would suggest you see an LLMD. Best wishes
Posted by janet thomas (Member # 7122) on :
First, I would read Dr. B's Diagnostic Hints and Treatment Guidelines.
Second, you need more doxy. 200 mg twice daily is typical, and I was only 123 pounds when I took it.
I would also get to a Lyme literate physician to be sure you're treated properly and you CAN beat this. Don't put it off until you're chronic. It will be expensive, but cheaper than waiting.
I had it very badly and was a chronic case, bedridden .... I am well today. You can get better, but be active now. Good luck.
Posted by lmi88 (Member # 28095) on :
kimmie: Thank you. Ugh. In my head I've wanted to think that because it's all felt so sudden and there's been no lab test, it's localized/early/no big deal. I'm new to it all, and to ill health generally, and have never needed to question a doctor. It's been quite the mind-switch for me.
I'll talk to my PCP, see if she will give me more for now, and look for an LLMD in the meantime. Thank you for the response, again.
janet: I have. I think maybe up til now, when I started getting so fearful because of the severity of what I'm experiencing, I just haven't wanted to believe I'm sick and that the guidelines apply to me or that I'm going to have to fight against the medical establishment. Especially when I see how much the chronic sufferers are going through - what I'm experiencing doesn't hold a candle to that, I know.
I'll read it all again before I talk to my PCP tomorrow. And I'll look for a support group. Thank you.
Posted by janet thomas (Member # 7122) on :
There are lots of Lyme drs in NY, some of the best. A local support group should be able to help you.
Posted by arkiehinny (Member # 26546) on :
Hi, just wanted to let you know that catching it early is a good thing. If you can get to a Lyme literate doctor asap, your chances of complete recovery will increase.
I was about 5-7 weeks from initial exposure before I started treating. I started aggressive treatment July 7, 2010....am still treating today. All symptoms gone except for elbow, arm, muscle, wrist pain.
Please get to a LLMD right away. We will be your support group. Don't give up & follow the links given to you to find out what your next move should be.
Posted by ChristieL (Member # 27786) on :
Your story about the "pain" sounds a lot like my case, pm me if you want~~ When I got my DX (diagnosis) I was happy.. I did not know at that time the hell that was waiting. Please, please.. make an appt TODAY with a LLMD. You may "feel" better, but if you do not treat this now.. and aggressively, you are going to get worse. It could be days, or weeks or months.. You sound like me.. I NEVER accept that I am sick. This (lyme and who knows what else) has changed my whole life. I was so unprepared for what I went through. Your local docs do NOT get it, trust me even the ones that are ordinarily awesome.. dont get it. Save yourself from what so many of us have gone through, and are still "living" through. See a LLMD ASAP~~ From what you have said about timing, if you see an LLMD, they will test you correctly, for lyme AND co-infections, and make sure you ABX is enough. I waited too long.. and my body, my life, is paying the price. I am not trying to scare you, but you asked for honesty.. run to an LLMD. Even if you are feeling better.. this thing can play hide and seek. Don't take ANY chances. I wish you the very best~
Posted by MidnightMoon (Member # 26717) on :
Hi....Glad you pm'd me as i no longer am using this board. and otherwise would have not known had it not come into my private email. I am sending you the info you requested. It does sound like lyme and.or coinfections because antibiotics make the pain and flu symptoms worse. I hope you get (quickly) to one of the great drs. in the area.. dont be scared........they'll help you. Michele
Posted by rmsfnc (Member # 27539) on :
Take everyone's advice above. If you are in NY you may get lucky and find an LLMD that accepts insurance. I was infected 5/3/10 and started the right dose of Doxy on 8/13/10 (3 1/2 months). I took 200mg of doxy a day from my primary starting on 7/26/10 so I had started something 2+ months in and am still taking doxy and now flagyl. I have made great progress since the beginning but wish I caught it earlier since there are still days I feel pretty awful and can't imagine ever feeling completely "normal" again but the time will come. Do what you can to get twice as much doxy into your system and make an appointment with an LLMD soon.
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