trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I read in another thread, that taking mepron without ABX causes resistant Babs.
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).]
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minoucat
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posted
Oh geez, 2 years and no treatment. Can you go for treatment now?
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.
NP40
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posted
Our doc used zith/plaquenil/artemisinin for babs. Had very good results.
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valymemom
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posted
I'd like to know, also, True Blue. My son is just on plaquenil with no abx.
That has always been the case with his treatment (biaxin and mepron by themselves) and I sure have not seen any improvement.
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posted
Anybody has success treating Babs while on Biaxin for Bb?
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trueblue
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Member # 7348
posted
quote:Originally posted by minoucat: Plaquenil seems to be used mostly now to help reduce inflammation and pain.
That was the reason I was given to take it. Unfortunately, it multiplied what was there.
(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:Origianlly posted by valymemom: My son is just on plaquenil with no abx.
Does it help him at all, painwise? Posts: 3783 | From somewhere other than here | Registered: May 2005
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liz28
Unregistered
posted
Plaquenil is an old-time malaria drug that is now considered obsolete. Some LLMDs use it in abx combinations because they believe it increases the strength of other abx, especially zithromax.
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).]
trueblue
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Member # 7348
posted
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)
Bingo! It should not have been given this way! A bad mistake, that I'm still suffering for, by a very prominant LLMD.
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.
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valymemom
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posted
True Blue
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.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
valymemom, Can you call Dr B and ask? (Or is that what you meant?) Ultimately your son's going to want to make his own decision but... if he's miserable and Dr B suggests it's best to stop for abit. Perhaps...
(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.)
Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Trueblue, Plaquenil does have some antimalarial properties, as well mild immunosuppressive. This is why it works for arthritis patients. I think that it is given to lyme patients only because of it's ability to help some abx work better, but I have never heard of it being used as a stand alone drug for lyme or babesia.
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.
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