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Posted 3/16/2009 3:48 PM (GMT 0)
I was just prescribed plaquenil to treat the cyst form of lyme. The usage of the drug says it is to suppress the immune system in the treatment of lupus. Why would you want to do this if you have lyme. I thought steriods and drugs that suppress the immune system make treatment much slower. I am reluctant to take it. Maybe I should ask for tendamax instead. The doctor recommended it but I was worried about the expense. I don't really want to worry about my eyesight with plaq either. My eyes are already a mess.
Posted 3/16/2009 7:22 PM (GMT 0)
Although I have heard many on this forum have been helped by plaquanil but that wasn't the case for me. I ended up with a stevens/johnson reaction from it last year and was in the hospital for a week. It took several months for me to recover from that. I learned that some people simply do not have a specific thing in their bodies to tolerate that drug and I am one of them.
Posted 3/17/2009 2:31 AM (GMT 0)
Minerals, you have been on a lot of abx for a long time. Have you taken any breaks?
I looked up side effects on tindamax and it causes cancer in mice and rats. I feel at a dead end. I just talked to the LLMD a few days ago and I hate to call him again. It is expensive. I will just wait and see.
Posted 3/17/2009 3:02 AM (GMT 0)
i am taking plaquenil with biaxin and I have to say for the firs time in a long time I have hope
The herx is not great but that is from the biaxin or the combo not from just plaquenil.
I am feeling like I may be making a breakthrough for the first time on treatment and i have nothing bad to say as of yet about the drug.

It has been only about 6 or 7 weeks as well so that is not a long time.. But. I just wanted to add that and well i think that you do need to do what feels right to you...

But I have not heard through my own reading and research any bad things about the drug.

The risk of the eye issue I have not heard of a case yet? And as far as the immune suppressive qualities of he drug. I have only heard that a couple times but it has not been verified to me what that mechanism is that creates that to be true??

Just my thoughts
Posted 3/17/2009 1:55 PM (GMT 0)
Thanks KeepHope,
I don't know how it suppresses the immune system either and I should be assured that an LLMD (lots of them in fact) would not give patients anything that has a long term detrimental effect. After seeing so many apathetic doctors, it is hard to trust any of them.
I can't get out of my shock every time I realize that I am still sick and nothing is working to get rid of these bacteria.

I am taking amoxi for the lyme spirrochete. about two weeks after starting it, I assume the pain in my arm and back is a herx. I quit levaquin 3 days ago until this pain goes away, just in case. I am going to wait until the pain subsides before starting either levaquin again or plaqenil. Logically, I feel it is worth the risk to use both of these drugs but carefully monitor for serious side effects and quit when I feel worried. But I am back and forth about this as the long term effects can be so serious.

In the meantime I am taking HH, Samento and grapeseed extract along with the amoxi. The grapeseed extract liquid I got from the health food store has already removed the white yeast cover on my tongue. It is supposed to kill the cyst form of lyme but not as well as plaqenil. The taste is wretched so I ordered capsules online which are much stronger than what the LLMD is giving me.
Posted 3/17/2009 7:21 PM (GMT 0)

KeepHope said...
i am taking plaquenil with biaxin and I have to say for the firs time in a long time I have hope
The herx is not great but that is from the biaxin or the combo not from just plaquenil.
I am feeling like I may be making a breakthrough for the first time on treatment and i have nothing bad to say as of yet about the drug.

It has been only about 6 or 7 weeks as well so that is not a long time.. But. I just wanted to add that and well i think that you do need to do what feels right to you...

But I have not heard through my own reading and research any bad things about the drug.

The risk of the eye issue I have not heard of a case yet? And as far as the immune suppressive qualities of he drug. I have only heard that a couple times but it has not been verified to me what that mechanism is that creates that to be true??

Just my thoughts

The risk to eyes is pretty minimal.  It only occurs after several months in a very small percentage of people.  It's something an eye doctor will easily spot.  I saw my eye doctor (who is also a top notch surgeon) and he knew all there was to know about plaqenil.  Not only that, but he was very in tune with its benefits for Lyme, and knew very well of the struggle for us Lymies (yep an LLeyeMD).  I almost asked him if he'd treat me, but then I remembered I already had a great doctor.

So in short, regarding plaq and eyes, I wouldn't lose a minute of sleep over it.  As long as you get an eye exam after a month or two, there is absolutely no chance you will cause eye damage.

Posted 3/18/2009 12:26 AM (GMT 0)
Thanks mountainbiker. That is good to know. My pain is not as bad today so I hope to get back on the full program soon.
Posted 3/21/2009 12:30 AM (GMT 0)
For plaquenil, it's recommended that a baseline eye exam be administered prior to starting the medication. Then testing every 3 or 6 months. This is because it has a small chance of causing retinal damage (or cornea too I believe), over a longer period of time. A baseline exam will give them something to refer to, to see if there is any damage being done.

A regular eye exam or glaucoma exam is not enough I was told, it needs to contain field of vision, color, grid in center of vision, central 10 degree visual fields, eye dilation for seeing into the back of the eye. That was what I came up with in my research and by calling a few doc's and pharmacies. Hope this helps!
Posted 3/21/2009 1:26 AM (GMT 0)

Hi nefferdun.  Plaquenil is often prescribe with an antibiotic because it can help the antibiotic work more efficiently.  Many Lyme doctors prescribe it.

I took Tinidazole for the cyst form.  It is similar to Flagyl but is supposed to be easier to tolerate.

Posted 3/21/2009 7:46 PM (GMT 0)
My arm hurts so bad I cannot lift it so I am falling apart over the drug issue. Besides that the LLMD has not called me back with a new ABX to take so I am currently using herbs. If it is my luck to get the worst of the side effects, it worries me to take anything chemical.
I thought about using tinidazole until I read online that it causes cancer in mice and rats carrying a risk of being a carcinogen.
Plaqenil is in the cupboard until I get the nerve to try it. It costs $200 to talk to the LLMD so I will just have to make up my own mind. I have invested nearly 3K in one visit including lab work that had nothing to do with lyme just to rule out other disease I knew I did not have, travel, drugs I now cannot use and supplements. I was all geared up to go the distance, take the nuclear arsenal of drugs and blast this disease out of my system. Now I am thinking I will have to just live this way forever trying my best to keep the worst of it at bay.
Posted 3/21/2009 8:49 PM (GMT 0)

nefferdun, you do not have to live like this forever.  Why are you saying you are falling apart over the drug issue?  I cannot understand a doctor charging you $200 for a phone call.  Is this a phone appointment or just to answer your questions?

Do you have co-infections? 

Are you taking herbs under a doctor's supervision?

Posted 3/22/2009 12:18 AM (GMT 0)
Hi Ticker, His phone consultaion for half an hour is $200 but I assume if I have questions I will be charged and I am very worried. The reason I feel so upset over the drug issue is because I was using Levaquin for BLO and my arm began to hurt so bad I could hardly use it at times. I didn't know what the problem was - took the optimistic approach (as did the doctor during my phone conversation) that it was a herx from the amoxi I was using for lyme, but then I had a horribly painful snap when I reached out to pick something up and realized it was actually the Levaquin affecting my joints - it can cause tendenitis and in some cases rupture the tendons. The pain lingers and worries me as it has been weeks. Is this permanent? I read about someone whose tendons were so "brittle" from levaquin that they ruptured a year after taking it.
The LLMD gave me most of the supplements I am taking but I started the Samento and HH capsules when I quit the abx (on my own) waiting for him to call with another prescription. I thought it might help me from sliding backwards until I got something else but the longer I wait, the more worried I am about taking another drug as all of them seem to have serious side effects. My tongue, by the way, began burning and stinging during the last month of ABX and has not quit either.
I don't want to worry about blindness. I will call his office again and discuss all of this as it is better than worrying.
Posted 3/22/2009 1:33 AM (GMT 0)

Hi nefferdun,

  firefly took plaquenil for one year along with methatrexate, The onlly time in 11 years now that she could function.  Plaquenil was first developed for Milaria.  It has been around for a very long time.  I have only heard of one person who had eye problems, and she had been taking it for several years. Most of the people that we know have not had side effects from the plaquenil.

I hope you feel better soon.

Posted 3/22/2009 11:44 PM (GMT 0)
thanks everyone. I am feeling better today. My arm is not nearly so painful so it must be resolving itself. I will call the doctor tuesday when his office is open again and get another abx to take. I hope my primarly problem is bartonella now rather than lyme, and I can get it under control soon.
Posted 3/23/2009 4:51 PM (GMT 0)
Don't worry about the plaq. It is very benign. The issues with the retina only appear after a month (or more I forget) and that's rare. The way it was explained to me, if you're prescribed it for a month you do not need an eye exam.
Posted 3/23/2009 5:56 PM (GMT 0)
If you take plaquenil, you need to get an eye exam every six months, but it's very rare to have problems. My ophthalmologist has seen problems, but only in people who have taken it for YEARS. It's not a problem that just happens overnight. According to him, the people that have problems take it for many years for rheumatoid arthritis. Ideally, you won't be on it nearly that long.
Posted 3/23/2009 7:05 PM (GMT 0)
nefferdun I just wanted to offer my opinion on the burning tongue. I had this happen to me last monday and it wasn't quitting. I believe it is yeast/fungus as I started diflucan and in a few days the burning is gone. Just wanted to share that with you because that was a weird symptom for me. And I will add when I started the diflucan I had stopped all abx so I knew it wasn't them.
Posted 3/23/2009 9:17 PM (GMT 0)
Thanks to you all.
seeingstars, I was wondering if it might be yeast. I will ask for the diflucan when I talk to the doctor tomorrow. It is not as bad because I have been off the abx over a week and taking a lot of grapefruit seed extract but it is not completely gone either.
I won't worry about the plaqenil. I talked to Schaller today (kind of just to set me up to buy his book etc) and he sent me a few emails one of which had pictures of bartonella rashes. No question that I have bart now as I have papules that look like little blood blisters - never would have noticed them before.
Posted 3/23/2009 11:58 PM (GMT 0)
Hi nefferdun,

I agree with many here about the Plaq.  I'm on it with biaxin and haven't had any trouble.  Went to the eye doc who was surprisingly informed re: the plaq and Lyme.  He was more worried about what Lyme would do to my eyes then the plaq.  So I felt much better!  By the way, he started me on "Soothe" eye drops. You can get them anywhere and they really help the eye burning and achiness.

Yes, the tongue thing is probably yeast.  You need to get a good Lyme book that talks about how to keep that at bay.  "Everything you need to know about lyme",  "coping with lyme disease", even "chronic fatigue, fibromyalgia, and lyme disease; 2nd" are very useful and probably at your local library. But you need to start with the "sugar busters" diet; no sugars, very low carbs.  Yeast thrive in a high sugar environment!  Also you should be taking some sort of acidopholis.

I know the pain really sucks!  I used to get really confused trying to figure out what was Lyme pain and what pain was from meds.  Then I had a whole body herx and wanted to die. 

Try to trust your LLMD.  My LLMD will do phone appt also, but she will answer email questions without charge.  See if your's will.

Hope this helps!

Hugs

Posted 3/26/2009 2:17 PM (GMT 0)
 

I am now on the full cowden, but he kept me on Plaquenil. Anyone have any idea why? I have been on 200 mg 2x a day.

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