Has anyone else experiencd this? I HATE Azithromycin now. I'm on 500 mg daily and have been for 10-11 days. The fatigue has been horrible the last 3 of 4 days. All I want to do is sleep. Arms feel heavy. Legs feel heavy.
I always do better on Biaxin (1,000 mg daily). Is this normal to fail miserably on one Macrolide and do fairly on another? Don't get me wrong, none are any cure. Biaxin seems to clear my head somewhat and make me more energized at times.
I had a local LLMD praise Azithromycin and put me on it mono-therapy for 4-5 months, with no major improvement. Now, I'm trying to go back to some form of Babesia Tx and both my LLMD and another doc want Zithromax with either Malarone or Mepron. My non-LLMD says Biaxin is for ear infections and not Babesia. Apparently, he doesn't believe it has a use for Lyme, but I don't believe he thinks I have Lyme anyways.
I don't know what to do and am sick of it all. My LLMD Rxed 250 mg of Zith daily. An oddly low dose IMO unheard of. Myother doc wants me on almost 10x this much daily! I'm lost as can be. Posted by mixxster (Member # 22765) on :
The fatigue is unbearable for me too, I'm on day 6, but its all I can do if this is the best treatment, which is what I need.
Most babesia and malaria experts say Azithromycin is the best to prevent resistance.
Why are you saying 250mg is an oddly low and unheard of dose? I believe this is one of the most prescribed doses in the world. I'm on 250 right now, I don't know if 500mg is really all that necessary, plus most insurance won't pay for this does for extended periods of time.
Also, everything you are going through is pretty standard for babesia treatment. Its either part of the die off or its a side effect, but if its the best treatment, many of us just learn to live with it.
Hope all your struggles will turn into a great recovery, goodluck.
[ 11-18-2009, 01:09 PM: Message edited by: mixxster ]
Posted by sutherngrl (Member # 16270) on :
I actually had a harder time with Biaxin. I started out with Flagyl and Zith 500mg of each for one month, then once my body was saturated went to 250mg Zith for several months.
So far low dose doxy has helped me the most.
Posted by sutherngrl (Member # 16270) on :
Once your body gets saturated, higher doses don't help. Your tissues and cells can only absorb so much, the rest is excreted, then your liver has to work harder to get rid of all that extra.
Posted by seekhelp (Member # 15067) on :
I'm saying it's an oddly low dose as WildCondor took 1,200 mg daily. An ID doc I know laughed at the 250 mg daily dose and just shook his head.
SG, how do you know a saturation point? Do you have a LLMD actually testing blood levels of each drug to make that determination? I can't se why Dr. H in NY would Rx mega doses if they had no positive effect on patients.
I'm not even on an anti-malarial right now so the fun hasn't started yet.
Posted by mixxster (Member # 22765) on :
It would only be considered a low dose if it were taken alone at that dose. But this is the standard dose with Mepron therapy.
At this dose, its purpose is not to treat or eliminate any babesia parasites, only to prevent the babesia from developing resistance. This is based on extensive malaria studies. With babesia, its really just a guess, as babesia treatment has never been studied extensively in humans.
Posted by seibertneurolyme (Member # 6416) on :
seek,
Can't help you, but do want to say hubby's LLMD -- not the one you are seeing had him on either 300 or 600 mg of Zith 3 days a week only. So there are other other LLMD's that prescribe this med low dose.
Hubby had heart palps with the first dose he took but continued taking the med at those low doses for about a year. He never did adjust to this med. Pretty much herxed with every dose -- even after we thought the Babesia was gone. Can't say what it was working on but it did seem to be trying to do something.
Can't remember the doses, but do know that z-pack which are commonly prescribed for other infections start with a loading dose and then decreased doses over the next 6 days. Zith has a very long half-life -- something like 48 hours I think.
Bea Seibert
Posted by sixgoofykids (Member # 11141) on :
My LLMD prescribed 500 mg daily. I could not take Zith. I went from feeling pretty functional to not wanting to get out of bed. Both fatigue and pain.
If I cut the dose down to 250 per day, I could tolerate it, but my LLMD told me that low dose could build resistance. We tried pulsing 3 days at the 500 mg. then four days off, but I couldn't even tolerate that.
I got better on Biaxin, worse on Zith. I took Biaxin with Mepron (and other meds).
Posted by seekhelp (Member # 15067) on :
I have a feeling I'm just a non-responder to Zithromax. My eyesight has gotten worse on it too. I feel all blurred, off balance. Stupid meds.
Thanks for the feedback everyone. I honestly have zero idea what to believe in anymore regarding protocols, dosing, success/failure rates, resistance issus, etc. Everyone has different opinions.
I want to get better so badly and be normal. I try to believe what I hear when someone says they were cured. When I hear of zero patients getting cured/remission on a given protocol, alarm bells go off for me. We have little to depend on with TBIs so you must stick with whatever exists.
I don't want to be a TBI 'lifer.'
Bea, I believe Zithromax's half life is even longer at 68 hours! When one says 250 mg is good for resistance issues with Mepron, what on Earth are you hitting your Lyme with? Dr. B repeatedly stated oral Zithromax is a useless treatment in the guidelines. Just curious.
Posted by DaveNJ (Member # 17362) on :
thanks for making me feel like i am not alone...o have been on zith since June and my life has been pretty much hell...mostly with feeeling like my muscles weigh 100 lbs...it is getting better but soooo slwoly..i am on 500mg pusled 5 days on and 5 days off....
and unlike Biaxin the minute this stuff hit my bloodstream i was a mess...its not quite like that now...now i'm juts generally crappy. My LLMD says this is the reaction she wants so on i go....
Dave
Posted by seekhelp (Member # 15067) on :
I'm sorry you're havintg these issues too. Why on Earth does a LLMD think/approve of you being sick/losing functionality for 5 MONTHS on a drug? Hmmmm. Seems odd. Not all in life is a herx. I guess it could be, but?
Don't these docs pay attention to Dr. B's wisdom? Maybe not a herx, but Lyme running more rampant as the drug is not effective.
Posted by DaveNJ (Member # 17362) on :
Seek,
i agree with your point in general ...but for me it does not apply. i should have mentioned that i've gotten my brain back to 98.9% while being on this...its clearly herx as each time i pulse i am knocked down a peg. Others may doubt their doctors but my doctor and i are working together. if she tells me i have to suck it up..i do. i trust her.....
having said that i feel like i am appraching the point of screaming uncle...its especially painful because i was phsyically functioning well before this....mentally my brain was jello...now its the reverse.
Dave
Posted by swedish lyme sufferer (Member # 14579) on :
Biaxin totally knocks me OUT...... Zith keeps me at a level of functioning.
Posted by seekhelp (Member # 15067) on :
I guess we're all different. Posted by swedish lyme sufferer (Member # 14579) on :
Seekhelp; sounds a lot like your symptoms are a herx ... Are you sure you are not herxing??! Maybe you ARE responding to Zith??!
Posted by seekhelp (Member # 15067) on :
The herx never ends though. I can't buy into it. Most docs say 2-3 days max.
Posted by sutherngrl (Member # 16270) on :
In the beginning I heard that a true herx only last 4 or 5 days. Now recently I have heard that once your body is saturated with antibiotics that you can just feel bad from all the toxins in your body. Some have a harder time with that than others.
I am one that feels crappy most of the time on antibiotics. I have a few good days, but always feel better when I take a break from them.
Now that I am on doxy, we are not taking any breaks so I will have a couple of good days in a row follwed by a few days to a couple of weeks of feeling purely awful. This is pretty much my cycle all the time.
Posted by seekhelp (Member # 15067) on :
I agree SG. i thjnk the 30-day or 3 month herx is crap. i think it's one's body's way of saying I'm overwhelmed with meds. If after 12 months of treatment, I am not seeing any decent improvement with meds, my gut tells me I'm batting at the wrong fly,.
Posted by sutherngrl (Member # 16270) on :
How long have you been treating Seek? I don't think it is unusal for it to take 1 to 2 years to begin to see improvement.
Posted by seekhelp (Member # 15067) on :
15-16 months. I truly feel you can treat for 15 years and get nowhere if not doing the right stuff.
Posted by springshowers (Member # 19863) on :
I did well on Oral and IV Zith. I did HORRIBLE on Biaxin. Even after two hours of taking it I felt horrible and stayed horrible.
Uhggg.. I would go IV if I were you.. I can not believe it took me 5 years plus... to go for it...
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