Does the same go for plaquenil?
I'm asking because I was given plaquenil without being on ABX for a few months (in 1995). I was told it would take 5-12 weeks to see if it worked.
At 11 weeks I could no longer stand the flare in symptoms and massive increase in arthritic problems. (Which persist to this day.)
I have not had any treatment which worked since that time. Sometimes a mild improvement, but nothing significant.
I have not been on any treatmant for over 2 years because what was the point.
However, I've been sinking lower and lower as time goes by.
Is it possible? If so, then what?
(I'd really like a life back.)
[This message has been edited by trueblue (edited 27 May 2005).]
Don't give up. The hubby did something similar, laying off tx for a long time (a year) because he wasn't getting anywhere. His condition deteriorated badly, but he's getting effective tx now and I'm very happy with how well he's doing. Getting strongly at all the coinfections has turned the tide for him.
I don't know if plaquenil buy itself causes more of a tendency to resistance, but I do know that plaquenil and biaxin (and with other abx) was not effective in the long run against babs for us--and actually, was not very effective in any way at all.
Plaquenil seems to be used mostly now to help reduce inflammation and pain. My understanding is that it can create a very acidic environment, though, and that may be what happened to you.
That has always been the case with his treatment (biaxin and mepron by themselves) and I sure have not seen any improvement.
quote:That was the reason I was given to take it. Unfortunately, it multiplied what was there.
Originally posted by minoucat:
Plaquenil seems to be used mostly now to help reduce inflammation and pain.
(I'd be afraid to go anywhere near plaquenil ever again.)
I can go on treatment, anytime, I only need to ask. (Oh, yeah and beg the meds. Unless I can find inexpensive ones.)
quote:Does it help him at all, painwise?
Origianlly posted by valymemom:
My son is just on plaquenil with no abx.
At this point, it seems safe to say that ketek, the next generation of zith, has demonstrated a marked improvement over its predecessors in its ability to control Lyme, babesia, mycoplasma, and maybe even bartonella. So it would be a better drug to explore taking along with mepron. Both drugs are very expensive, however, so that's an issue to consider.
I was disabled for four years by Lyme and babesia, and was on plaquenil for much of that time. When I switched to ketek, artemisinin, and high doses of mepron, there was an immediate improvement, although I've been on these abx for seven months and do still have light flares. You may have to stay on maintenance abx for a long time, as babesia flares in monthly cycles, but at least you will have your life back.
You said this, "Plaquenil seems to be used mostly now to help reduce inflammation and pain. My understanding is that it can create a very acidic environment, though, and that may be what happened to you. "
Where do you get this information that Plaquenil can create a very acidic environment, when what it actually does is to raise the Ph level(more alkaline) inside the cells so that drugs like Biaxin and Zith can be more effective?
I don't know why anyone would use it by itself if they had lyme? Dr B only recommends using it in conjunction with zith, because zith works better in an alkaline environment (less acidic)
The following is taken from Dr B's Guidelines : "However, initial clinical results were disappointing, especially with oral azithromycin. It has been suggested that when Bb is within a cell, it is held within a vacuole and bathed in fluid of low pH, and this acidity may inactivate this class of antibiotics. Therefore, they are administered concurrently with hydroxychloroquine or amantadine, which raise vacuolar pH, rendering these antibiotics more effective. "
[This message has been edited by micul (edited 27 May 2005).]
quote:
Originally posted by micul:
I don't know why anyone would use it by itself if they had lyme? Dr B only recommends using it in conjunction with zith, because zith works better in an alkaline environment (less acidic)
I'm sorry, I'm feeling fairly hopeless and weepy today (and I'm frustrated and angry to boot). I suppose it'll spur me into action but what's available to me, at this time, is pretty slim. 
Talked to my son and he says all pain is terribly exagerated!!!!
We, too, are going to a llmd who is helping people (but not my son with this kind of treatment). We have tried, actually, to get him to stop and wait until his appointment with Dr. B. on Long Island.
I am thinking I should call and ask their office if he should come off this until we meet in 5 weeks.
The problem is: My son really likes/trusts this llmd who he has seen now for 17 mos....
I see no changes at all for the better. Doc is caring and gives of self but......
Anyway....I feel to blame since my son hasn't wanted his dad and me at his appointments since mid January. (Trying to take control himself, but not reading any of this).
I just found you all in December.
(I don't know, it's just a thought. I also wonder what would have happened if an ABX would ahve been added while I was on it.)
Dr B says in his guidelines that immunosuppressants like hydrocortisone should never be used on lyme patients, and if they are used, then only with abx. It could be that the plaquenil was suppressing your immune system somewhat, which allowed the lyme to worsen. I don't think that plaquenil is a problem when it is used properly with the right abx. I have read many reports of people that did well with plaquenil when it was used in combo with zith and biaxin.