Topic: I Stopped The Biaxin/Plaq!!!! LLMD Cant Help Me Anymore!!
BostonLyme2005
Unregistered
posted
Hi,
This combo made me herx, badly, no doubt! It also made me lose sleep so very badly that I could not funtion at all, even at home.
I had nightmares too. I had a weird feeling in my head as well. Plaq may cause seizures...
Back on Tetra now.
What is next for me? LLMD said he has nothing else to offer me other than Tetra and Bi-Plaq combo...If I wanted to stop Tetra for the summer, (meaning no abx for 4 months), then start the Tetra again, I could...
He only deals with this two types of protocols...
HELP!!!!!!!!!!!!!!!!!!!
I am going to see this LLMD on Thursday who has work with Dr. J., and others...
Checkout his site and get back to me, re: anything, please?
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Don't fret and find a new LLMD.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Rob,
You are in the same spot I was in with Dr. D over 7 years ago. I did well on the Tetra but plateaued after about 7 months of that and when he switched me to Biaxin and Plaquenil, I developed bad shortness of breath that took me to the emergency room (this was about 2 weeks after starting it so it wasn't a classic allergic reaction).
When I spoke to Dr. D about all this, he gave me the same options he gave you.
Unfortunately I wasn't smart enough or knowledgable enough to immediately seek a new LLMD and I spent the next 2 years without treatment and I'm sure that has been a big contributing factor to my difficult to treat case.
You are taking a good first step - going to see a new LLMD. Get evaluated for co-infections, get on treatment that works for YOU.
I'll be thinking of you on Thursday and hoping the visit goes well.
posted
That's pretty bad. You may have done well on Biaxin alone. I did!
Glad you're finding an LLMD now!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Find a new LLMD. A good one never gives up and always has something else to try.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Rob,
There are numerous antibiotics to treat Lyme. Hopefully your next LLMD will understand that.
For various reasons, there are only certain antibiotics I can use, and we have to go slowly with me - not too many combinations. But that still leaves several for my LLMD to try on me. I'm not worried about running out of antibiotic options and you shouldn't be either.
There are many antibiotics left for you to try. It's always trial and error to see which ones agree with you, which herxes you can tolerate. A good LLMD will be patient about that.
If you haven't yet read Dr. B's guidelines, please do, because it lists so many medication options. It might help you and the next LLMD you see to discuss the many options.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
How about just biaxin in the summer. Maybe alone you won't have the reaction you did. We were fine with it alone.
We all took tetra long term and biaxin in the summer. We are talking years Rob. It took almost a year to see impprovement.
Have you treated for Babs yet. Our improvement came after a couple rounds of mepron. Two of us tested negitive and were treated anyway.
Do consult another llmd if you feel he isn't open minded about treatment. My first llmd was so IV driven, he couldn't conceive that anything oral would work.
Posts: 1572 | From Pa | Registered: Jun 2001
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posted
I think Plaquenil is one of the Disease Modyfying Anti-Rheumatic Drugs, used to control pain for rheumatoid arthritis, reactive arthritis, etc.
Does it cause Herxing too? Or does it simply make Herxing worse from Biaxin?
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
shiz- plaquenil is used to make the cells of the body more alkeline. This enables the Biaxin to penetrate the cell wall easier, and work better. It is not used as a rhuemie drug when used with an antibiotic for Lyme.
rob--yes, get to another doc who will work more thoroughly with you.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Yup been there with that same LLMD... Never even bothered to return my emails about how horrifically sick I felt... I just stopped seeing him after 2 years and he never once wrote/ called to see if I was still alive..
Get to a new LLMD ASAP.
Posts: 437 | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Panic is a killer.
or at least it feels that way
calm down which ever way you can
youll be able to make better decisions that way
Posts: 2905 | From New England | Registered: Sep 2004
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Rob, you are new at this game, but don't feel scared about switching doctors. You are a paying customer basically, and if you are not satisfied, you try another LLMD, who may find the co-infections, or a better combination of drugs to help you.
Do you know of other patients who recommend this center? Patients are good to talk to because they know a thing or two with their own experiences and satisfaction levels.
Give it a try. Biaxin for now, is OK alone. Some folks felt sick on Plaquenil.
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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Do you know of other patients who recommend this center? Patients are good to talk to because they know a thing or two with their own experiences and satisfaction levels.
Give it a try. Biaxin for now, is OK alone. [/QB]
Yes! Be sure to talk to "happy satisfied customers" when choosing a Dr!
Biaxin alone is great!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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