posted
I think many on this board would agree that this is an important topic and hopefully can spur some interesting points and ideas.
It seems that relapses are fairly common for many that go off of Mep/Zith/Art. For those that have been successful, it would be great to see which drug combo was added and what doses? Any suggestions or ideas? I read one poster was finally able to knock the bug after switching zith to clindamycin.
Posts: 187 | From Gaithersburg, Maryland | Registered: Feb 2006
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posted
I think the main method of preventing a "relapse" is in adequate treatment the first time. Babs is hard to clear and I think most who were successful in clearing it, took many rounds of the meds.
I cleared mine by taking clindamycin/quinine. I never took mepron. I did take artemisinin after several years of treatment with clinda/Q.
By "several years" I mean rounds of babs treatment, followed by rounds of Lyme treatment, over and over until both were killed out.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
wenny
I just recently spoke with someone whose son was treated 4 years with mepron/zith/art and finally the babs is gone. Now in college.
This actually gives me hope....because I, too, read of these relapses. I just hope my son's liver hangs in there. He's been ill over 6 years.
Everything we read here says don't under treat.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Our doc used an interesting protocol for my son's babs treatment. He did the zith/art/mepron, then replaced the mep with plaquenil when he reacted poorly to mepron.
He did 3 months of this treatment. He then switched him to biaxin and flagyl. This combo would certainly have some effect against the babs plus treats the cyst form of Bb. He's been symptom free for many months.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
I PM'd you some names. Since falling into the dubious role of primaquine-drum-beater, I've gotten several emails from people describing their experiences. Here's some common themes:
1. The herx usually starts after the fourth dose.
2. The drug takes about 45 minutes to kick in, and the strongest effects last about five hours.
3. During the first two weeks, the side effects are much worse than people expect, because they are losing red blood cells. Everyone has described extreme, bone-crushing exhaustion and severe depression. Count on it. I take Provigil for fatigue, which is the closest thing the medical community has to a Sandy Duncan pill, and depression was still a temporary problem. If you are not a vegetarian, now is your big chance to live on red meat and say it's good for your health--B complex may help as well.
If you have a high Lyme load, you may also experience paralysis. You definitely don't want to drive when you take this medication until you are familiar with its effects.
4. Almost everyone has described needing to pulse this drug, because they can't tolerate it more than four or five days in a row.
5. NEVER take 30mg base per day as some malaria websites advise, unless you happen to be King Kong. That dosage is only for people dealing with tropical drug resistant malaria. The normal dosage is 15mg base per day.
6. There is often a temporary intensification of old Lyme symptoms.
7. For those who hang in, there is a dramatic reduction in constant lowgrade fever, and an improvement in concentration and mood.
8. It seems to only get you to a certain point, and then you have to add another drug. For me, that was chloroquine. Quinine is another good one to check out. Both of these are terrific in the right dosage, but dangerous if you go overboard and take them by the handful. I was super cautious with the chloroquine dosage, and still developed serious tinnitus that won't go away.
9. Maybe this is just wishful thinking, but it seems like every single person who has written privately about primaquine abruptly stopped writing on Lymenet. That also goes for the people who have written to say they are still struggling with some lingering aspect of babesia, or who may still be lurking and reading posts.
In fact, I just did a search on someone who last posted June 4, to say that she hated primaquine, everything was getting worse, it wasn't working, etc. She hasn't written anything since then, and it's June 21. Hmm...
posted
I took Doxy and Artemisinin first on low doses of Art, then stopped for two weeks. Then took Artemisinin along with my other herbs. But this time I went on the 3-day, high dose of the Artemisinin. THAT finished off the bottle of Artemisinin that I had.
SO, I got the whole herb Artemisia annua which is where they get the Artemisinin from in the first place. I took it at 1200mg a day for two weeks along with my other herbs, and of course the Red Root tincture; and started to herx heavily at the end of the two weeks, so stopped for two weeks again.
Then I went on 600mg a day for three weeks along with the Red Root and other herbs, and herxed hard the last couple of days, so stopped again for two weeks.
I will continue doing that for as long as it takes, to not herx from it. The full herb Artemisia annua is also very good for other ailments. So more beneficial to take than the extract Artemisinin. Also there are studies showing that the whole herb seems to do a better job of eradicating the bugs.
IT will ALSO WORK for those who have been on abx too long and they are not working anymore.
posted
What seems to have ultimately made the difference for me was taking an unusually high dose of mepron w my zith. I did several rounds for three months each of 2tbs mep +6oo mg zith but relapsed after each. Then did many months til it was absolutely ruining my stomach and I couldn't take the abdominal pain for another sec of 4 tbs Mepron + 600 mg zith. This ultimately has done it for me. I've been now years free w no relapse! Also this high dose is really exceptionally high for me bc I am a pretty small person at 110 pounds and 5'6".
Pomegranite
Posts: 309 | From CA | Registered: Nov 2002
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