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» LymeNet Flash » Questions and Discussion » Medical Questions » Next course of action: Help? Lost and confused...

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Author Topic: Next course of action: Help? Lost and confused...
eronvica
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Member # 6342

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I have been on doxy (Vibramycin) 300mg for almost three weeks now. All my tests were negative, Elisa, Western Blot. My GP perscribed only 200mg after I finally convinced her that my symptoms could be related to Lyme based on the fact that I did have Lyme about 10 years ago. (In 1992, I had 10 inch long rashes behind my knees, and near my groin, flu-like symptoms, ear swelled up, couldn't breathe. I was given abx and evrything went away. I read that Lyme can come back because sometimes the antibiotics given in the 1st Stage don't kill all of it.)

I luckily found a specialist and he raised my dosage to 300mg. Upon starting the antibiotics, my knee pain increased and I got a nasty cold (Is this really a Herx???). As of today, my knee pain is sort of under control, but I still have major stiffnes in my right leg (going on 10 months). Had MRI of knee; it's healthy they say.

Last night I couldn't sleep: I felt like I was being pinched all over my my legs and feet. My back still aches a lot. Neck bothers me once in a while. (My two main symptoms are knee pain and stiffness and unbearable lower and mid back pain. Sometimes my shoulders ache; there was a time when I had burning sensation in my knee calves, thigh muscle and shoulder joints, but this hasn't happened in a while.) How long does it take for abx to take fulll effect?

Next Wed I have an appointment with my LLMD. If my symptoms have not totally disappeared, what should be my next course of action? Should I take a break from abx for a while, and then proceed if I don't get better. I'm so afraid of taking more antibiotics. He mentioned a course of Rocephin IV if the orals don't work. Any suggestions? He also said we would check to see how my yeast is doing when I'm finished with the abx. Are there any other exams I should have him do.

I live in Germany and he said that the reason I might be testing negative is that the tests done in Europe check for other strains of Lyme. Anyone know about this? Should I fly home to the states to get tested?

Thanks so much!


Posts: 11 | From Morristown New Jersey | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
TheCrimeOfLyme
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Eronvica,

Lyme isnt easy to treat. The more that it disseminates throughout the body, the longer you have to treat it. I dont think that by next wednesday, all of your symptoms will have disappeared, that is, if you mean totally.

If that were the case, all of us would be better with three weeks of doxy! As far as the doxy, its already in full effect, beings you have been on it for three weeks. Its just not going to take away all your symptoms that quick.

It could! for some *some* people it has. But I believe you said you contracted LD back in 1993? That would mean it had ten years under your belt before you got treatment for it again.

I hate to be the bearer of bad news,but you may be looking at antibiotics for a long time.

You shouldnt stop antibiotics until you stop having herxheimer reactions AND you are completely symptom free for at LEAST two months. Some LLMDS say six! I myself, would go to six.


I wouldnt take a break from abx and then proceed if you dont get better. If you are already NOT better and take a break, thats not going to help you get better.

Dont be afraid of taking more antibiotics. Be more afraid of having lyme run rampant in your system and come back yet AGAIN and then you have to start all over again.

I've been at this for 17 months. I think 18. NOt sure I think I am finally, FINALLY at the point where I could probably get away with taking antibiotics maybe once every third day, etc, like pulsing.

BUt please, three weeks? Or three months, I cant remember what you said.. for a ten year long standing infection? Keep going!

As far as the strains, there are 300 worldwide, I believe. 100 of them are in the US. They cannto make a test to test for all of these strains. I wouldnt fly home for testing. It may yield the same results. I STILL test negative to this day, although I did start out with a very positive PCR and equivocal blood. Its not you, its not your blood. They just simply cannot devise a test to test for all of those


strains at once.

I hope this helps you some.

Are you taking acidophillus to help balance the GI flora? That may help keep your environment a little more less hostile for the yeast.

[/B][/QUOTE]


Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
treepatrol
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WELCOME To LYMENET

Here's more goodys! A typical response to newcomers.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.

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Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
riversinger
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If you have had Lyme for a long time, three weeks is just barely enough time to get started with treatment. Some are lucky to have improvement right away, but for most people it takes much longer.

Four weeks of treatment is the first time people expect the classic herx, you haven't even been treated that long. It takes six weeks to be sure you have treated an entire reproductive cycle.

If you stop treatment, you give the bacteria a chance to allow the strongest ones to reproduce, potentially increasing resistance. Better to keep treating. If necessary, you change antibiotics after giving one a good trial.

I know this isn't what you want to hear, but its the truth. If wishing it wasn't so would make us better, nobody would be on Lymenet!

As far as whether you should go on IV, that is up to you and your doctor. There is no positive consensus as to whether it is essential, or better than orals. For some it is great, others it doesn't help.

------------------
Sonoma County Lyme Support
[email protected]


Posts: 2142 | From California | Registered: Nov 2003  |  IP: Logged | Report this post to a Moderator
   

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