I just won't do the rocephin IV trtment. But along the way have stacked up some 'scripts for doxy, zithro and flagyl. I have studied my strains and the abx known to work best for them. zithro and flagyl. I don't really have a llmd at this point, my primary moved out of state and my other docs are obviously not equipped or competent to handle my lyme issues. Should I do these two on my own? Rotating them, pulsing I guess they say?
Posted by jkmom (Member # 14004) on :
I am taking zith and Flagyl now. I take 600 mg of zith daily and I'm slowly adding the Flagyl on Fri, Sat, and Sunday.
My LLMD said that zith is not first line Lyme treatment but since I had good results on my Lyme symptoms when I took it for a URI that I should stay with it.
Posted by 1WearyChick (Member # 17840) on :
Hi JKMom
How long have you been on the zithro? And you just started adding in the flagyl? How is it going? Any of other protocol you are using?
Posted by METALLlC BLUE (Member # 6628) on :
Zithromax without Plaquenil is practically worthless in treating Lyme Disease.
Posted by 1WearyChick (Member # 17840) on :
yea Metallic? Why do you say that? I found literature that says otherwise; that combined with flagyl it is effective.
Posted by jkmom (Member # 14004) on :
I'm not doing anything else except the zith and Flagyl right now.
I've only been on abx for about 6 weeks so far.
I'm supposed to work up to 3 250 mg pills of Flagyl on Fri, Sat, and Sun. I add one pill each weekend. This weekend, I will take one pill each day.
I did an abx challenge about 2 months ago and took Flagyl and Biaxin. I think I did herx then. I haven't herxed since then unless it was very mild.
My symptoms are air hunger, knee pain, hip pain, and muscle twitching. When I did the challenge, my knee pain went away completely. On the zith, my knee pain and muscle twitches are much better and my air hunger is gone. When I don't take the zith, it all comes back.
I will ask about the Placquenil when I go back to the LLMD in a few weeks.
I am not sure if the LLMD has officially dx'ed me with Lyme or if he is just seeing what will happen with the abx.
Posted by Dawnee (Member # 15089) on :
What are you going to do about having your liver enzyme levels checked every month though?
Posted by Clint31 (Member # 16420) on :
quote:Originally posted by METALLlC BLUE: Zithromax without Plaquenil is practically worthless in treating Lyme Disease.
Would have to disagree.
Zithro, well for me anyways.... has completely taken away my bart symptoms. I had a foot cramping that was unreal. Its almost completely gone now.
Posted by seekhelp (Member # 15067) on :
My LLMD said he has great success with patients using Zithromax mono therapy. It's hard to find the same opinion twice!
Posted by METALLlC BLUE (Member # 6628) on :
Clint, notice you said "Bartonella". We're talking about for Lyme Disease.
Patients who often use Zithromax alone do not report improvement in Lyme Disease. Zithromax must be used with a co-med, to work effectively else results are "No response" or at best "Relapse."
The Flagyl on the otherhand could easily mask progress. The reason is that Flagyl has a higher rate of success in helping Lyme Disease patients by killing the cystic form of Lyme Disease. If mixed with Zithromax, you might think the Zithromax was helping, when it's not. However Flagyl, is also not effective in many cases too. I'd say if I had to guess, about 50% of patients notice progress with Flagyl, where with Zithromax alone note only improvement in about 5% of cases, unless they have a co-infection which is responding to the Zithromax, but even then, most cases don't respond to Zithromax alone even with co-infections, they often need the Zithromax for Children, which can sometimes be helpful. More cases respond to Zithromax for co-infections, like Bartonella. Zithromax is only also useful for preventing resistence when using Mepron and other drugs to treat Babesia, but not in actually killing the Babesia.
Zithromax in IV form has the complete opposite effect. It's "extremely" potent and useful for Lyme Disease. Combined with Plaquenil it's even stronger.
Posted by lymebytes (Member # 11830) on :
People get well on Zith/Flagyl. One LLMD is quoted recently as saying his "success rate skyrocketed with this combo"
My (IlADS-prominent) LLMD said this combo literally hits everthing Lyme and co's and even babesia to some degree.
Posted by CD57 (Member # 11749) on :
I think at the ILADS conf, a prominent east coast LLMD said if he could do only one combo for Lyme it would be Plaquenil/Biaxin/Bicillin. Hits all forms.
Posted by seekhelp (Member # 15067) on :
I'm starting to wonder if I should have toughed it out on Plaquenil. I kept getting burning pains in my legs. Maybe the Zithromax / Plaquenil combo would've been better than Zithormax / Malarone / Omnicef??
Posted by METALLlC BLUE (Member # 6628) on :
The best thing to do is just keep doing your homework before deciding. Conflicting opinions are a common issue, not just among the "IDSA, but also among ILADS physicians." The best course of treatment varries greatly from individual to individual.
Posted by gemofnj (Member # 15551) on :
I know that everyone here is adamant about combo therapy and is recommended by most LLMD's.
And it has been a big concern for me that my LLMD only has had me on monotherapy since June. One month biaxin and Zithro alone ever since July.
And, I have been very concerned because of everyone's opinions (who I value) indicate I should be on something else with the Zith.
I am not fully recovered and still getting symptoms, some which first started in the beginning.
However, I can readily say that maybe I am an exception, but I have been steadily improving since July and feel that I am probably on most days 90-95% recovered.
Do I need another drug to be sure. Some people have told me, "if it aint broke, dont fix it".
Am I nervous I may be missing something, YES. But have I improved? YES.
Could I feel better because the LLMD recommended that I start focusing on my immune system, I dunno that either.