I was on antibiotics for almost 9 months, recently my LLMD (Dr.S from Baltimore) asked me to stop. As soon as I stop i got the LYME symptoms coming back such as burnig in hips and foot and muscle tinglist. I am not what to do, i called my doctor and informed him about this, and he asked me to start the meds again. I restarted the meds and a day after that i had a worst ever heraxing end up at ER for two days. My appointment with LLMD is on 22nd of may. So meanwhile i have seen a Infection Decise specilist and explained him my story, the ID doctor told me that I should not take meds for such a long period, and more over he is saying the DR.S is fraud.. i am so confusing, dont whome to trust and what to do. Please kindly advise what you guys think.
thanks Mallasani
Posted by AZURE WISH (Member # 804) on :
Please believe your LLMD!!!!
Infectious disease drs do not believe that chronic lyme exists.
They think that a maxium of 30 days of abx will kill all lyme -
and if you are sick after that time well you don't have lyme anymore now you have post lyme syndrome or fibromyalgia or whatever other bs label they feel like slapping on you.
I have been on abx much longer than you and they are still helping me. I would be in a wheelchair paralyzed by pain or dead if I didnt have the abx.
So please don't listen to the quacking comming from these moron duck-docs ... SAve yourself by listening to your llmd.
Best wishes
Posted by Aniek (Member # 5374) on :
Any chance the infectious disease doc was at JH Hospital? The ID dept there does not believe in long-term Lyme nor the treatment with longtern abx.
Were you symptom free when you went off the abx? If so, how long were your symptoms gone? And how long have you had Lyme?
If your LLMD had you stop the abx before the symptoms were gone, I would question the treatment you are receiving.
Posted by Jellybelly (Member # 7142) on :
I am so sorry to hear you are so sick and ended up in the ER. I ended up in the ER herxing once too.
I would like to take what happened to you to make a point for everyone to think about. It sounds like you were doing better, then you stopped the ABX and all symptoms returned.
Lyme is VERY smart and people underestimate their survival skills. You were on ABX for 9 months straight. It is a known fact that when under attack Lyme can and will go into a dormant stage in order to protect itself. In this dormant stage ABX for the most part are useless.
So could it be that while you were on the ABX for the extended period, the Lyme went dormant because it's survival was in danger. You felt better, because the Lyme was not active, raising havoc. You stop the ABX, and all hell breaks loose.
Could it be that durning most of that 9 months there was really NO killing going on because it was dormant and when you removed the ABX, the Lyme felt safe to come back out into the open in mass and then you hit them with ABX again, surprising them. Possibly killing to many at once causing a horrible herx, landing you in the hospital.
This seems like a real possibility and this is not just what I alone have theorized. There are other Lyme specialists who are starting to form the same conclusion. Putting an element of surprise into the battle could be good strategy.
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