Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 > What were the doses per day of zithromax that people in the group have tried? (What worked?) Is the dose dependent on weight like other antibiotics (like doxycycline for instance)? > Thanks, > Kelley Hello, I am new to this list. I was just diagnosed with borrelia, but my doc thinks I also have babesia because I have been on 500 mg a day of Zithromax for about 7 yrs. When I cut back to 250 a day or 500 every other day I get sick. Right now my doc is trying the lower dose plus another antibiotic, right now Flagyl. So far he has tried Zithromax at 250 a day combined with Vantin and then Levaquin, each for a month. I am relapsing, feel lousy. (My history is that I was diagnosed with mycoplasma incognitus and cfs in 1996) This doctor keeps telling me that Zithromax stays in your tissues, so he doesn't want to overdose me, but I have been on Zithro for 7 yrs at 500 mg a day. I don't think overdosing is the problem. UNDERDOSING is. Just my opinion. But I am following his orders, as I figure he will figure it out in another month. Meanwhile I don't feel good. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 a, My LLMD is having me on Malarone for a couple of months to test for Babesia and so far no effect but I have heard this drug does help you react to herx's if you have Babesia. I have been sick since '97 and am on IV's in my 7th month. Don't know if this helps but thought you might suggest it to your LLMD. Bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 <<<<<<I have been on 500 mg a day of Zithromax for about 7 yrs. When I cut back to 250 a day or 500 every other day I get sick.>>>>> Seven Years?? or do you mean 7 months? Why in the world did they leave you on an abx that wasn't helping you? Sounds like you are going through withdrawal symptoms when you stop the daily dosing. Your body has become so dependent on the Zithromax, you get sick when you don't take it. Talk to your Doctor and wean yourself off gradually, so it doesn't shock your body. Oh my, what kind of damage has taken place in your body? Get to a different LLMD. Conniek nwnj When our bodies & minds are out of balance........we suffer! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 I have been on Zithromax 7 years. I never tested positive for Lyme, no surprise there. I was going to chronic fatigue syndrome doctors. I don't think the Zithromax has hurt me. In fact I think it has kept me better than I would have been without any treatment. Yes, it was given because of the mycoplasma test, a PCR. A good friend started telling me last year she thought I might have undiagnosed Lyme so I started looking. I was functioning ok but wanted to get well and not relapse whenever I went off antibiotics. My relapse is just that, a recurrence of the original symptoms I came down with in 1995. I don't think it is damage from the Zithromax. Also I have tried several other antibiotics and I relapse while on them. They don't work. I am so pleased now that I have a Lyme specialist who is seeing what you folks on this list probably see immediately when you hear my story. As for cost, I am on Medicare but my secondary health insurance has been a life saver because they have paid for the Zithromax all these years. They also pay for growth hormone, as my pituitary is damaged. I look forward to hearing ideas from all of you. a > Wow, 7 years on Zithromax. That stuff is expensive. Was the mycoplansma > the reason you were on the antibiotics so long? What made you or your doc > think to look at Lyme and babesia after all this time? Thanks for the info > on the Zith. Most people have mentioned 250mg twice a day. A vet (who has > Lyme) that I correspond with said the protocol from Dr.Crist (whom he sees) > in Springfield, Missouri, for Zith was 250 to 500mg four times a day. If > that is the case, then you and I are underdosed not overdosed. At this > point, I have so much nausea that I can't increase my dose, but I have been > taking it only a week. Good luck. > Kelley > > > > I am new to this list. I was just diagnosed with borrelia, but my doc > thinks > > I also have babesia because I have been on 500 mg a day of Zithromax for > > about 7 yrs. When I cut back to 250 a day or 500 every other day I get > sick. > > Right now my doc is trying the lower dose plus another antibiotic, right > now > > Flagyl. So far he has tried Zithromax at 250 a day combined with Vantin > and > > then Levaquin, each for a month. I am relapsing, feel lousy. (My history > is > > that I was diagnosed with mycoplasma incognitus and cfs in 1996) This > doctor > > keeps telling me that Zithromax stays in your tissues, so he doesn't want > to > > overdose me, but I have been on Zithro for 7 yrs at 500 mg a day. I don't > > think overdosing is the problem. UNDERDOSING is. Just my opinion. But I am > > following his orders, as I figure he will figure it out in another month. > > Meanwhile I don't feel good. > > a > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 I have heard that the recommended dose of Zithro for Lyme is 600-1200 mg daily. a, are you seeing a knowledgeable Lyme doctor? Have you been tested for the other co-infections (besides Babesiosis)--Ehrlichiosis HME & HGE and Bartonella? What state do you live in? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 <<<<<My relapse is just that, a recurrence of the original symptoms I came down with in 1995.>>> Since this is a relapse or possible reinfection....how long were you free of symptoms? Why haven't they tried to stop the Zithromax before now? Did your blood tests after your original infection in 1995 ever come back clean of all bacteria? I am shocked you have been on abx for that long. Why was your Pituitary damaged, from Lyme? or from another bacteria? or another problem? Genetic? I am trying very hard to rebuild my body and immune system after a long time on abx. I am seeing a specialist to try and get things balanced again. I can't imagine the rebuilding necessary after seven years. How is your immune system? Sounds like the bugs have built up an immunity to Zithromax, they are becoming super bugs. Your Dr. may want to consider another abx or additional abx.......or a break from abx. Every day abx for seven consecutive years? I guess I can't believe someone being on abx for that long without damage. You must have some kind of body to withstand lyme disease and all that abx. I would consider a break from abx.......I too had symptoms just like when I originally got sick when I stop abx. It took three months to clean my body out and to get use to not having daily abx. The withdrawal symptoms were much like my lyme symptoms, and difficult to tell the difference. After every week, I would improve........and then finally after several months I was pretty normal. I do think my body and immune system are out of whack and really need some help repairing and balancing. Have some extensive blood work done to see what is happening. Have your immune system tested. Check for all bacteria. Conniek nwnj When our bodies & minds are out of balance........we suffer! Leave no stone unturned, research!......The mind is a powerful tool! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2003 Report Share Posted June 16, 2003 Wow, I didn't mean to get you guys all worried about me. I had a cfs diagnosis in 1995. Then had a PCR positive for mycoplasma incognitus. I never dreamed I had Lyme, nor did my doctors. My immune system/ liver function etc has been normal after starting the antibiotics. I have gone off the Zithromax for up to 3 months at a time and ALWAYS completely relapse off the Zithromax. I am seeing what I consider to be an outstanding Lyme doctor now for the first time. He is the one who had me tested at Igenex and came back with a positive western blot. He also thinks I have babesia but I have not been tested for that. I do not think Zithromax has been harmful even over many years. I do think mycoplasma is extremely harmful. I am much healthier on the Zithromax, but not well. The pituitary and thyroid problems are probably damage from the infections. I doubt they will recover, but I can take the thyroid and growth hormone. I am interested if anyone else on the list is taking antibiotics and which ones. a > <<<<<My relapse is just that, a recurrence of the original symptoms I > came down with in 1995.>>> > > Since this is a relapse or possible reinfection....how long were you > free of symptoms? Why haven't they tried to stop the Zithromax before > now? Did your blood tests after your original infection in 1995 ever > come back clean of all bacteria? > I am shocked you have been on abx for that long. > Why was your Pituitary damaged, from Lyme? or from another bacteria? > or another problem? Genetic? > I am trying very hard to rebuild my body and immune system after a > long time on abx. I am seeing a specialist to try and get things > balanced again. I can't imagine the rebuilding necessary after seven > years. How is your immune system? > Sounds like the bugs have built up an immunity to Zithromax, they are > becoming super bugs. > > Your Dr. may want to consider another abx or additional abx.......or a > break from abx. > Every day abx for seven consecutive years? > I guess I can't believe someone being on abx for that long without > damage. You must have some kind of body to withstand lyme disease and > all that abx. > > I would consider a break from abx.......I too had symptoms just like > when I originally got sick when I stop abx. It took three months to > clean my body out and to get use to not having daily abx. The > withdrawal symptoms were much like my lyme symptoms, and difficult to > tell the difference. After every week, I would improve........and > then finally after several months I was pretty normal. I do think my > body and immune system are out of whack and really need some help > repairing and balancing. > > Have some extensive blood work done to see what is happening. Have > your immune system tested. > Check for all bacteria. > > > Conniek nwnj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 Do you have a source where you heard about the 600-1200mg/day Zithro dose? A vet (who has Lyme) that I correspond with said that Dr.Crist's (Springfield, MO) protocol was for 250-500mg four times a day. So far, I am having trouble keeping down 250mg twice a day without throwing up after every dose. Kelley From: " tickick " <ko_@...> Sent: Monday, June 16, 2003 5:42 PM Subject: [ ] Re: Zithromax dose? > I have heard that the recommended dose of Zithro for Lyme is 600-1200 > mg daily. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 Hi, I was on the 250 originally, but now am on 600mg once a day. It is the only thing that works for me. It helps my arthritis so much. The CFS and FMS is much better when I take Zithromax. I have been on it for years. Off lately due to much sinus URI infection. I can't wait to get back on. My joints and muscles hurt so much. Remember everyone may not have the same strain of Bb, you need to stay on a med 3-6 months before you can tell if it may help you. Good Luck Hugs, Connie, Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 Kelley, I am sorry you are having trouble with the Zithromax. I assume you are taking it with food. I realize you don't know me and have no reason to take my word for something, but there is no reason to space out the dose. It may be possible for you to take it with your largest meal of the day and take both pills at once IF YOU THINK YOU COULD KEEP IT DOWN BETTER. The reason I suggest this is that Zithromax is famous for its long time it stays INSIDE the cells/tissues. Indeed, if you took 500 mg every other day you would have a higher tissue concentration for more hours in those two days than if you took 250 mg every day. I am just suggesting this because you may get less nausea with a really big meal and keep the whole dose down. Of course, talk this over with your doctor. a > Do you have a source where you heard about the 600-1200mg/day Zithro dose? > A vet (who has Lyme) that I correspond with said that Dr.Crist's > (Springfield, MO) protocol was for 250-500mg four times a day. So far, I am > having trouble keeping down 250mg twice a day without throwing up after > every dose. > Kelley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 Kelley Dr. B's guidelines recommend 500-1200 mg daily of Zithro. I have been on 1200 mg before. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2003 Report Share Posted June 18, 2003 <<<<you need to stay on a med 3-6 months before you can tell if it may help you.>>>. What is your source for this information? Conniek nwnj When our bodies & minds are out of balance........we suffer! Leave no stone unturned, research!......The mind is a powerful tool! Quote Link to comment Share on other sites More sharing options...
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