posted
I have a phone consult with LLMD this week, and my brain is so numb right now I'm having a hard time coming up with good questions.
I have been on zithomax and mepron for 6 weeks now, and plaquinil for last 4. I felt like my symptoms were improving for a while there but I'm feeling pretty damn discouraged now. Nerve pain shots all over, joint and neck-back disc pain, facial tingling & numbness, bad-painful-double vision, and especially bad is recent lyme-brain.
I travelled 300 plus miles to a technical training last week, struggled thru, and am now wondering if that was a mistake. I am supposed to travel (for my daughter) about 200 miles this weekend. But at least that will just be spectating soccer games.
I feel my life slipping away again, but can't seem to put words to it...or at least intelligent questions.
LM
Posts: 212 | From Eastern CA | Registered: Apr 2007
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posted
oh I forgot to mention I'm also having a lot more trouble concentrating again...crap.
I thought I had at least some of the symptoms under control, now it appears I was deceiving myself.
LM
Posts: 212 | From Eastern CA | Registered: Apr 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi LM,
Traveling can be tough when you are in treatment. I have been traveling too, and find I am exhausted afterwards.
About your questions for llmd -- with mepron and plaquenil, sounds like you are being treated for babs. (Remember, this treatment itself, especially mepron, can cause folks to feel bad for a while. But getting rid of babs is worth it.)
But, what is your treatment for neuro-lyme? In my experience (not a doctor), other things are used often by llmds. E.g., for orals, high-dose doxy or minocycline; high-dose amoxy; or cephalosporins (ceftin); or IV Rocephin. Have you read Dr. B's guidelines?
Sounds like your doc wants you to get rid of babs first, and then treat the lyme. Best wishes and good luck at your appt.
Posts: 2557 | From home | Registered: Aug 2006
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posted
Oh, I think that combo of a macrolide and plaquenil (not to mention mepron too) can be very powerful for lyme.
If it makes you feel any better---my husband has been on mino/biaxin/plaq for almost 12 weeks. Weeks 6 thru very recently have been extremely difficult. He is finally starting to feel better. This is after almost 2 yrs on various abx for neuro symptoms.
Although it is difficult, try not to get discouraged---even a veteran like my husband fell prey to the " I don't ever think I'll feel better" thinking. I, however, being on the outside have an altogether different perspective. I can see this "herx" for what it is. I watched it start at week 6 and gradually worsen and now gradually get better.
Finally, with clearing head and not so aching leg, my husband said, "I feel so much better--you were right it must have been a long herx from the m/b/p combo." Our doc told us to watch out for the week six herx as well.
Through all of this my husband has taken a backward tumble numerous times....(always seems to be aligned with a new drug combo), but when it was over he has always reached a new high in terms of how he is feeling and functioning.
Just so you know he has been on doxy,zith,mino,diflucan,mepron,rifampin,tini,biaxin and plaq....in various combos.
Hang in there and here's hoping you feel better soon.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
PS: Yes, I should add -- herxing often causes an intensification of lyme symptoms! If you are only 4-6 weeks on these meds, then it may be a die-off reaction that you are experiencing. So, your feeling worse may be a sign of success. All my gains were also preceded by feeling worse!
Sojourner is right, while zith and plaquenil do hit lyme, my point is that they are not usually used for bad neuro-lyme symptoms, to my best knowledge. Some treatments, like IV Rocephin or mino, are known to cross the blood brain barrier to a greater extent. Not sure about zith and plaquenil in terms of the bbb, be sure to ask your doctor!
Posts: 2557 | From home | Registered: Aug 2006
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