valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
After close to 3 years of being treated for lyme without any remission of symptoms my son started mepron/art/zith 5 months ago.
I think he needs to continue this treatment but he was to start bart meds after the 5 months. He was to be off meds a week, though, before beginning bart treatment with levaquin.
Yesterday after being off meds a week he came and asked me to get his prescriptions for him because all his symptoms have intensified.....a worsening of his daily headache, jaw, neck and shoulder pain, his fatigue, muscle pain and joint pains.
He said he did not realize that he was feeling a difference until feeling sooooo incredibly bad that he can't function.
My husband and I think this means he should continue the babs protocol. What do you think??????
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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savebabe
Frequent Contributor (1K+ posts)
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posted
Could it be a herx from the levaquin?
Posts: 1603 | From ny | Registered: Aug 2006
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lymednva
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posted
Although I can't speak from personal experience, it seems to me that he needs to stay on the babs meds while longer. Have you thought of calling his LLMD about this tomorrow?
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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valymemom
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posted
He was off all meds last week and just started levaquin today. All last week he was hurting in the extreme.
He never complains so for him to speak up and ask for me to go..... hurry to drop off the levaquin prescription..... and for him to admit that he was in pronounced pain all week means his pain is severe.
We just wrote a fax to send tomorrow to his llmd and plan to call, also.
I heard from so many people months ago that for many the babs treatment just starting kicking in during month 5. I think this means it was kicking in and he should not switch to bart meds.
I would like to continue the mepron treatment until we see our llmd late September.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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savebabe
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posted
If your son was feeling better on the babs meds, then maybe you should continue the treatment another month until you see your llmd. My PA told me that some people stay on mepron for six or seven months. Does you son have fevers or sweats?
Posts: 1603 | From ny | Registered: Aug 2006
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posted
I went about four rounds of Mepron and Zith. Recently I received my records from the LLMD (gathered records in support of my VA disability re-evaluation). Notes indicate that when I was off the Mepron, my symptoms kept coming back. Not sure how much this helps but there it is.
-------------------- Toodles, Sal Posts: 195 | From Tampa, FL | Registered: Sep 2001
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valymemom
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posted
Thanks all.
He has never had sweats but I have read that there are others who do/did not have that common symptom.
His first symptoms over 6 years ago are still with him....the daily headache, fatigue, muscle pulls and TMJ and the sleep dysfunction.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
I agree -- it speaks volumes when a young man who never complains about how he feels lets you know he's feeling so badly since going off the Babs meds. It sounds like your gut is telling you he needs to stay the course with that treatment and I would trust your gut on this one, at least as far as making a case to his LLMD.
I think I remember reading Dr. B talking about Babs relapses happening pretty quickly, where Lyme relapses take 3-4 weeks due to the length of the life cycle. Has he tested positive for Bart or is his doctor treating him just based on symptoms and the fact that he hadn't really seemed to improve yet?
Posts: 164 | From USA | Registered: Jul 2005
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posted
I just like your son did 3 years of lyme treatment before I finally went to another doctor who found the Babesia in me. My FSH and IGM (1280!) from Igenex were positive. No one before that ever caught the Babs.
I did about 5-6 months of the Mepron.Art/Zithromax and boy did I start to herx after a few months. The combo was stopped to start Bartonella treatment and within a few weeks Babs symptoms came back worse than ever. I never knew what air hunger was until I experienced it. I had sweats/chills/fevers, anemia, headaches, etc. I was put back on the Babs meds and till this day I am still on them. They upped the Mepron to 3 tsp a day and now I take Biaxin XL and Art with it.
My last FSH test showed a negative which is a BIG step. But my IGM thru Igenex was at 1:80 which shows active infection. I hope I am headed in the right direction. But in total I have been on Mepron combos for 13 months.
The Babs can be very hard to get rid of, so stay the course. Have your doctor also do the Igenex FSH and IGG/IGM on him.
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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valymemom
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posted
Thank you both.....and Lesley I just added your relapse fact into the body of my fax.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
Has your son been taking enough fat grams with the Mepron? I'm sure you realize a certain amt of fat grams are necessary for the body to use the Mepron properly.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
I haven't heard anything about adequate fat grams for the Mepron. My husband just started. Can you tell me what that's about?
Posts: 160 | From Abington, PA, USA | Registered: May 2005
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liz28
Unregistered
posted
I had to stop levaquin in less than a month, the pain was so intense. Every square inch hurt. Rifampin was no picnic, but it did get rid of the bart while allowing some physical functioning.
Mepron just does not work for everyone. I relapsed after a year on it, spent Thanksgiving, Christmas, New Year's and my birthday in bed with malaria symptoms, and finally had to switch to other drugs, chloroquine and primaquine. If you explore these, be sure to research the dosages on your own.
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groovy2
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Member # 6304
posted
Babs is a Tuff bug--it takes a Long time to get rid of it --
I did not make much progress until I treated Babs Also--
Now I mostly symptom free--
Make sure to take Mepron with greasy food Bacon- sausage- hamburger ect-- Animal fat works the best-
Grease makes mepron get absorbed into the body twice as good-- I can feel the differance --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
liz and groovy
I always read your posts and have done searches to uncover your wisdom concerning babs.
I got a response from the office and just picked up his mepron so that he can get back on it with art/biaxin XL.
At his July appointment I should have been more forceful/questioning when they decided to switch to a bart treatment after 5 months. This time/this fax I was.
He does take the mepron with fatty food or his fish oil capsules (my llmd recommended them for my other son to take with his mepron.)
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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