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» LymeNet Flash » Questions and Discussion » Medical Questions » Is planquenil absolutely necessary for Lyme and co treatment ?

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Author Topic: Is planquenil absolutely necessary for Lyme and co treatment ?
Maya12
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Is wondering if planq is absolutely necessary in the treatment of Lyme and cos? I have had to go off of it due to it causing vision problems

I am wondering though if it is absolutely necessary to take planq in order to get better?

Has anyone else ever gotten better without taking planq?

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Maya12
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Is anyone able to tell me whether this drug is absolutely necessary or not in fully recovering .

Is there anyone out there who has not taken this drug but has gotten better or is getting better ?

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AuntyLynn
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Are vision problems a possible "side effect" of Plaguenil? If you don't know, I suggest you search the drug at webmd.com.

Although I don't have first-hand experience with this drug, I DO know that Lyme Can CAUSE diplopia (double vision), therefore it is POSSIBLE that the drug was challenging the Bb, and your vision problems MAY have been a part of a "herx" response.

Anyone else have any thoughts on this?

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Maya12
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Hey aunts Lynn thanks for the help, yes planq can cause permenant vision probs in rare cases and my llmd suggested it could be a herx but because it wasn't going away but getting worse that I should stop it

Now I am concerned though that without the planq my Lyme treatment will be compromised or less effective

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Maya12
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Other thoughts on this would be great
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RC1
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I don't think you have to take it to get better. It is an antibiotic booster for some of the intracellulars, like Zithro and Biaxin. It changes the intracellular ph and makes them work better.

Doxy and Mino are also intracellulars and I don't think it does much to help them, but I'm not an expert.

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TF
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I never took plaquenil and I got rid of lyme, babesiosis, and bartonella.

If you read the Burrascano Guidelines, you will see that he never says hydroxychloroquine (generic for plaquenil) is a must for everyone.

Pull up the document on line and type in "hydroxychloroquine" in the "find" box (hit Control+F to open the "find" box) and read every mention of that term in the document. Then, you will understand what it is used for.

Once you read up on it, you will have peace of mind.

This is a good way to answer your own questions no matter what they are. This way, you get Burrascano's opinion. And, it's free.

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Maya12
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Hey tf thanks for the great hint about using the find box. I do know though that it should be used with biaxin so I wonder if this means the biaxin will be less effective?

If this is the case I am not sure what to do as my llmd hasn't suggested any med changes

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TF
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I don't think you did the search I recommended.

If you did, you would see the function the plaquenil performs and that you can use amantadine in place of plaquenil when taking Biaxin (clarithromycin).

Suggest you really read what Burrascano says so you will get the entire picture and various alternatives and answer your own question about effectiveness of Biaxin without plaquenil. (Bottom of page 14 especially.)

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Maya12
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Ok I will definatly read that, thanks tf
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Maya12
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So I just read that section and it sounds like the biaxin is much less effective without the planq. Not totally ineffective though just less effective

I don't know what to do though cause I can't take the planq as suggested by my llmd to stop it but she has not prescribed the Amantidine in place of this

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Maya12
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Not sure what to do now , how do you tell your llmd that you have stopped a med because initially she told me to stop it , then she told me to restart it again so I did but have not told her yet that I have stopped it again and don't know how to tell her as she keeps on telling me it is just a herx with the vision issues but it is not going away after a whole week and I am afraid to take anymore.
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Maya12
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I feel I am in a catch 22 because if I don't take the. Planq then biaxin is less effective but of I do take it my eyes are very blurry and I worry this is the planq damaging my eyes

What should I do?

Have others taken biaxin without planq and it has helped?

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TF
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You call and say,

"I have decided not to take plaquenil anymore due to the vision issues it is causing me. I am very concerned about this side effect. So, this is not the med for me. How about giving me amantadine instead? Do you think we can do that?"

Then, hopefully, she will call in a prescription for amantadine for you.

You don't have to tell it to the doctor. Tell it to whoever answers the phone. Say you would like to leave this message for the doctor.

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Maya12
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Ok thanks for the help tf I really appreciate it. This is such a scarry process
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Maya12
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Ugh it seems the side effects of amantadine are even worse than planq , maybe I should just stik to the planq and risk vision loss.

Has anyone ever used biaxin without either planq or amantadine to boost it?

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In19944
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i plowed through the initial plaq sickness which was hell. vision issues, vibration/shocks, dizziness, migraines, stomach aches, feeling like i was poisoned. i guess that's a herx. whatever, it lasted like almost 5 weeks. then it went away and i felt better than i did in months.

plaq is rough

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Maya12
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Hey in19944 your vision got worse when you started planq? Did you moods get way worse and very erratic too?

Weren't you concerned about the vision issues with planq that can be permenant ?

Did your vision get much worse on planq than before starting it?

Everything also looks foggy and hazy as if I am looking through a thick fog did this happen to you?

What sort of. Idiom issues did you have and it lasted all 5 weeks strait?

Did the vision issues eventually clear up ?

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Maya12
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i meant to say what sort of vision issues and it lasted 5 weeks strait with no letting up ?
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rera2528
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I echo what TF said about talking to the doctor. You need to let her know what you are doing in relation to the medicines she believes you are taking. Otherwise, it is unclear to her how your healing process is going and why.

I am not trying to belittle your fears of the side effects, but unfortunately, all of the abx carry some risk - vision, liver, kidney, neuropathy, tinnitus, etc. If the side effects are either impacting you too much, or if they seem to be too much, maybe you should consider alternatives to abx.

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Lymetoo
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nope

Plaquenil hurt my stomach, so I did Biaxin by itself.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Maya12
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hey rera i appreciate your suggestions , i have emailed her to let her know what is going on with my eyes and she has told me it is just a herx but i will e- mail her again to ask her what in her opinion i should do

i can handle side effects if they will go away once off that med i am just concerned about side effects that are permenant

i think what i will do , as she suggested is stop meds for about 2 days and really detox and see if things clear up

i know she mentioned that i should do this is things got too severe and i think before i stop the planq i will try this and see what happens and then decide how to proceed by talking to her if it doesnt clear up a bit

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Maya12
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really lymetoo , you couldnt handle planq either so you did biaxin by itself.

i seem to be handeling the full doses of biaxin and doxy well but the planq just messes my eyes so badley.

thank you for telling me this as i know not taking planq didnt hinder your treatment as you got better , or i think you did?

so it sounds like this is a possible option that i could talk to my llmd about ie stopping planq and just continuing with the biaxin and doxy and eventually i have to add in the flagyl pulse.

thank you so much for telling me this , i was so scared that wiothout the planq i would be messing up my treatment but it sounds like the biaxin can be done without the planq or amintadine

i am giving you a big hug right now for telling me this

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Lymetoo
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Yes, I am well.

[group hug] back atcha!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Maya12
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well thank you so much for telling me this lyme too , i really appreciate it and for all the support everyone gives me

i will have to talk to my llmd about this but at least i feel i have another option

hey lymetoo didnt you have mostly neuro lyme?

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Lymetoo
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No, mostly the arthritic kind.

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--Lymetutu--
Opinions, not medical advice!

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'Kete-tracker
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No it is absolutely NOT neccesary. It only aids some of the macrolides, like Biaxin (clarithromycin) to do it's job in the slightly acidic "intracellular environment" of the host's cells. (See Dr B's)
If you are having eye issues STOP it & don't use it any more.

Discuss with your doctor if there is a substitute he might suggest. (I know there are supposed to be 1 or 2.)

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randibear
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I didm biaxin and flagyl and azimuth. No problems but the doc did give me plaq and said that even at the very
First hint of eye problem to stop immediately

--------------------
do not look back when the only course is forward

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Maya12
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Ok thAnks for the help Guys I really appreciate all the feedback and will contact my llmd about this tomorrow. Hey randibear did you ever take the planq?
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Maya12
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Also does anyone know of any natural alternatives to planq that could boost the ph in the cell?

I know my llmd told me that green tea extract was found to boost the effectiveness of anti bioethics, I am not sure how though

But I was wondering if anyone knew of any other natural alternatives that could do what planq does?

Is interferon plus a product that does this?

And again thanks to everyone for the help and honestly I don't know what I would do without you guys and your knowledge.

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Maya12
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Oh and your support [group hug]
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randibear
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Nope haven't taken it sort of scared to

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Maya12
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I also find planq really drives me over the edge mentally and causes me to feel really spaced kout and I don't nknow why.

And thanks for the help manybites

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Maya12
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Hey many bites I read in another post that you were once suicidal. When first treating did it make these sx worse? The mental symptoms and how long did it take to notice any improvement in these mental symptoms
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randibear
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Eye problems terrify me too so I understand how you feel. I stopped cipro due muscle problems. I refuse to risk permanent damage to my eyes tho

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Maya12
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I agree randibear I have decided to stop the planq it also makes me almost hysterical and mental
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Maya12
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Thank you so much many bites I really appreciate all your help and honesty with telling me your story . Hugs to you
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Beagle
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I'm still trying to find out if Plaquinil helps with severe inflamation. Does anyone know?

(I have not been on line in a long time, been too sick and botched total knee replacement doesn't allow me to sit at all.)

If anyone knows that Plaquinil helps to decrease inflamation please respond.

Thanks!

Beagle

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bcb1200
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No it is not required. Plaquenil is only taken with Zith or Biaxin to help raise cellular PH so that the Abx will be more effective.

If you can't take Plaquenil, Burrascano says you can try Amantadine. I originally did Amantadine and it worked well.

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IgM Igenex +/CDC +
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Maya12
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Isn't amitadine supposed to be really bad too? For side effects that is

Has anyone had to wait a while before taking planq I think my load is so high that when I take it and boost the effectiveness of other abx I just can't handle it and just go over the edge

So anyone else that had to wait a bit to start planq as the herxing is just too much on it at first?

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randibear
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Have you thought about doing herbal like cowden or burner? Much less risk of side effects and permanent damage. At least in my opinion

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Kudzuslipper
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Hi beagle. Plaquinil is supposed to be amazing for inflammation. They use it for lupus and RA. I could not tolerate it. First time my stomach, this last time, just now I got really dizzy.

I have been on amantidine since the end of august and my pain is much less. Amanntidine is an antiviral, but for reasons unknown, it helps with Parkinson's, MS, and I also read that it is used for chronic pain and fatigue.

Biaxin and amantidine has been a good combo for me.

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Summer3
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I've been on Plaquenil for a few months. I had avoided it for a LONG time because I was worried about the eye risk. I finally decided to try it. My LLMD said the eye damage risk is VERY rare. I take it without biaxin right now because I'm on Rifampin, but I hope to combine biaxin/plaquenil very soon.

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CD57
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Plaquenil was terrible for me in terms of side effects and I felt it did not help treatment either. Not eye stuff though, more mental stuff. My doc said it's pretty hard to take.
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Larae30
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I've been on plaquenil now for maybe 5 months or a little more? I don't really notice anything?

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Treating lyme, bart and babs

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beaches
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I thought Amantadine was an anti-viral??

Anyway about plaquenil, it's a drug that's been around a very long time and considered safe. The only caveat is that you have to get your eyes check every few months.

As for me, I wish I could have continued taking it for inflammation. Unfortunately, I had unbelievable GI symptoms (had to RACE to the bathroom) along with an elevated heartrate. These side effects are supposedly rare.

If I were you, I'd give the plaquenil a shot.

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nonna05
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I get eye symptom's from one of the co infections acting up.

just not sure which one it is

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VV
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Why not just get try the Amantadine prescription?
You may not have side effects from it. I have been on it for three weeks and haven't noticed anything.

Posts: 922 | From Philadelphia | Registered: Sep 2012  |  IP: Logged | Report this post to a Moderator
   

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