posted
I got diagnosed in december and was given biaxin/plaquenil. Tolerated it till mid January and had to stop as I was getting terrible dry heaves/no appetite. Went off for about 2 weeks as it took that long to get it back to normal (I am horrible with medication).
Then was put on amoxicillin and tried to work up to 3gms (took almost a month to get there) and couldn't tolerate that either. The doctor said I would be ok staying at 2000mg but I wanted a 2nd opinion.
This month I went to an LLMD who asked me to revisit the biaxin/plaquenil combo. I did ok with one dose for a week, but working up to the second dose yet again had issues. On day 3 of the 2 doses I was up all night w/stomach pains and nausea, same w/day 4. So I stopped, emailed the dr. and he said it's due to lyme and not the meds. Not sure if I believe that as I know how my stomach is w/meds, but he must see a lot of cases.
What do you all think? Can you give me some encouragement w/the biaxin/plaquenil combo? IF you tried to treat this long without success in reaching therapeutic levels to treat the lyme for whatever reason, would you push for IV? I am so frustrated and depressed as I feel I'm doing nothing to treat the lyme.
Thank you.
Posts: 46 | From RI | Registered: Nov 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
3 months isnt long
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
For what it is worth from my experience I could not tolerate plaquinil at all. Some can and some have big problems. I did fine on one run that was biaxin alone. I did many other cobinations of zith, flagly, rocephine, omnicef, malarone, art, doxy, ceftin but the plaquinil was too hard for me.
Posts: 582 | From milwaukee wi | Registered: May 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Unfortunately, it takes a while to get better if you have been really sick- I don't know ANYONE who has done it quickly!!!!!!!!!!!!!!!!!!!!!!
But the good news is, *everyone* I know who has stuck with it HAD gotten better or gratly improved as long as they stick with good LLMDs and good protocols-
Your doctor sounds good and I would NOt go for IV at this early date!! IV has serious risks- like death from an infected line!!! That said, if you are really bad and orals don't do it, if you have really abd neuro Lyme, that is what you need- I don't think your posting would be so clear and well-written if you had super-bad neuro Lyme- but I could be wrong*)!*)! So I would stick for orals- we have one woman in our support group who got way way way better on orals and she had been sick for 15 years- so orals can do alot for people who have even been sick a long time!!!! If you begin to go downhill fast or show an ultra-neuro presentation or it is a year from now, THEN I would think about IV!!! But maybe your doctor will go there sooner than that with you- I don't know... but IV is a serious thing, and $, too...
WHAT I *would* htink about is IM Bicillin because you have an iffy stomach!!! IM does NOT have the risks associated with IV!!! You can get a friend or neighbor to inject you if you can't do it!!! But this may not be good for you for some reason, of course, your doctor needs to evaluate that. But I just thought of it because if you have stomach issues the IM bypasses that issue completely... But often Bicillin takes months to show effects, too, it is not a quickie for most chronic people!!!
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
so you can treat the lyme w/biaxin alone minus the plaquenil? I'm not sure which one I tolerate.
as for how bad my illness is, I have neuro symptoms, symptomatic in October, diagnosed in december and treating ever since. I was told I have a mild/moderate case...if that makes a difference. I have no cognitive problems or anything like that, just dizziness and headaches, muscle twitches, numbness, etc. which have greatly diminished thru treatment.
My LLMD wants me to try the biaxin/plaquenil again and add in Prilosec to help w/reflux. He didn't mention probiotics or anything...just yogurt.
[ 27. March 2007, 11:18 AM: Message edited by: Twinklette ]
Posts: 46 | From RI | Registered: Nov 2006
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posted
Cave thank you!!! I think I'll give it a go with biaxin/plaquenil 1x/day and biaxin alone for my 2nd dose. I was doing fine w/the plaquenil once a day but then when I added the second dose...at least this will let me see if it IS in fact the plaquenil causing the issues. I will email my LLMD and run this by him. thanks again!
Posts: 46 | From RI | Registered: Nov 2006
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posted
I couldn't handle plaq either. Gave me terrible stomach pain.
Biaxin was my very good friend! Didn't like the taste in the mouth, but oh well!
I think you'd also better get some probiotics, because store-bought yogurt contains an awful lot of sugar....something that won't help that stomach/yeast.
The prilosec may be a good option if the biaxin continues to be a problem for you.
I'm glad you are checking with your dr on these suggestions!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I had horrible headaches from plaquenil, and nausea then vomiting a few times. I dont know if this was a herx. In bed crying and saying I was going to end my life in the next minute, this went on for hours, so
I just could not handle the plaquenil then, would rather have died. MAYBE it was a herx, but at that time, could not do it, I am going to try it again, later.
I did not feel like this on the flagyl or tinidazole. I got very sick on flagyl but always better, herxing was tough, but I just cut back dosage then worked up, not with plaquenil, that sent me to suicide lane.
I know how discouraging it can be, I know, I know I know!
Hopefully you can see ONE good day, or half a day with all this. Just feeling a good day, and when I say good day, I dont mean driving around, I mean, what is good for you, compared to what you
Had felt. Maybe cut back the dosage and work up more slowly? Or try flagyl instead and see how you do.
good luck,
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
I was on doxy/plaquenil for awhile and tolerated it fine. Then we tried to add biaxin and I had terrible problems. I was then switched to Zithro which I am tolerating. I always have problems with my stomach everytime I start a new med. It usually lasts a week. I started treatment at the end of October and have been getting worse not better also. My LLMD now thinks I have Babesia even though I tested negative. We are dropping the doxy and adding Mepron, and then in three weeks Bicillin LA shots. I am keeping my fingers crossed. Keep the faith, right?
I thought the planqunil was mostly for my joint and muscle pain, not sure though....
Posts: 49 | From Grass Valley, CA | Registered: Jan 2007
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