posted
To make a long story short, when I thought I had chronic fatigue I was on and off doxy because it was the only thing that helped. Turns out it was lyme, but now I am doxy resistant and can't afford a LLMD. My GP will work with me and use the antibiotics from the Burrascano protocol but I was wondering what's worked for others. IV is not an option. Right now I'm on amoxi (1g 3x daily) and probenecid and have plateaued, so either increasing the amoxi or switching to bicillin looks like the best next option.
I have almost no joint pain, just extreme fatigue and difficulty with memory and comprehension. Ginseng, grape seed extract, and coq10 seem to help a little. Recently added magnesium, cod liver oil, ALA, glutamine (so I can tolerate the others supplements), and will be adding zinc, cat's claw and andrographis once they get here.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Sorry, I can't speak to abx as I can't tolerate them at all.
If you have extreme fatigue, I suggest not taking andrographis but allicin instead.
Andrographis, while excellent, causes severe fatigue - especially in the first few weeks. Allicin, on the other hand, is equally as good at crossing the BBB (blood brain barrier) and it can help increase energy.
I'd be careful with the glutamine. Too much can convert to glutamic acid and create hyper-excitability of the brain (or seizures if too much).
She is an ILADS member and a ND (naturopathic physician), so she has knowledge of the unique nature of the spirochete and what is required but also knows all about supportive techniques.
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Bicillin is very expensive (unless you are a lucky person whose insurance will pay - mine did not), but it definitely helped my stamina. I have talked to others who said it gave them great energy.
Do you know if you've become resistant to all tetracyclines or just Doxy? Minocycline is often used but watch out, it can make one off balance.
I've also been on Omnicef, then Ceftin, the recently back to Omnicef - they are in a the cephalosporin class, not the tetracycline/Doxy class.
I've built up resistance to Doxy two different times but may need to try again because I'm running out of options. Sometimes if you go off, you can go back on months later, but will build up a resistance again if you built one up before.
Take care, 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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omgwtfbbq
Unregistered
posted
Thankfully glutamine has almost no absorbtion, so it stays in the gut and is pretty much impossible to overdose with.
I looked and one clinical trial does list fatigue as a side effect of andrographolide, but that was in very high doses so I'll keep that in mind if I try it.
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omgwtfbbq
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posted
Jill, guess I should have mentioned minocycline but it definitely did not work for me. Dizziness was so bad I had to stay in bed. I've been on and off doxy so much it's not worth messing with, 400mg a day barely keeps me from getting worse.
I checked with my insurance already, didn't want to get a script then find out it wasn't covered and have to go back for a different script. $20 a month, generic bicillin 1.2 million units.
I'm assuming the normal dose is 10 injections a month, one every 72 hours? Should I get an epi pen to keep close by when I give the injections? My doc isn't a LLMD so not used to rxing the really high dose antibiotics.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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As omgwtfbbq says, mino is known to cause vertigo.
Antivertiginous action of vitamin B 6 on experimental minocycline-induced vertigo in man
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The Road Back Foundation at www.roadback.org may be a place to see what helps others. I talked to someone there a while back and they said that the pelleted, time-released MINOCIN was easier for some.
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In addiition to minocycline, azithromycin and Biaxin seem to also cause vertigo in many patients.
While some do fine with any of the three, those who experience vertigo or tinnitus from them often do better switching.
NAC (N-Acetyl-Cysteine) is supposed to be of some help, too, as well as other liver support - to help with the ear stuff.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Omg, suggest you now add flagyl to what you are taking. I started out on doxy with my family doc. Then, first lyme doc put me on amoxi like you. I plateaued after nearly 2 years of this treatment. I went to another lyme doc and he added flagyl to the amoxi. That caused a herx. Now, you are hitting the cyst form of lyme. You are killing lyme in both forms at once, which is what you need to do to eliminate it.
He actually wanted me to take flagyl and zithromax. So, check the price of zith. I know flagyl is cheap. He wanted me on flagyl 250 mg 3 times per day plus zithromax once per day.
He is a famous Burrascano-type lyme doc, so, since you and I had a very similar treatment history, I think it would be good to give this combo a try.
He had me first stop the amoxi for 1 week, then start the combo. This one-week break from meds is designed to make the lyme come out of the cysts. Then, it is hit with the 2 antibiotics, giving it no way to hide. It is an ambush!!!
Zith gave me hives right off the bat, so it was back to the amoxi and flagyl for me. Still, it worked.
Oh, by the way, I took 1,500 mg of amoxi 3 times per day. So, you can up the amoxi also while you are at it. (And, always probenecid with amoxi)
It has been nearly 4 years now since I stopped treatment and am still symptom-free, enjoying my life.
Also, be sure you are on an anti-yeast diet BEFORE you start the flagyl. And, try to eat 4 lemons per day (squeeze them into water, etc.) and drink lots of water. This is all to cleanse (detox) the body. Start this during the one week off of antibiotics. Continue it throughout treatment. This will greatly reduce the flagyl herx.
Also, I was to drink kefir (sugar-free type) daily and eat raw garlic (or Kyolic) daily.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
For what it's worth - I take clindamycin as my antibiotic. It's a lincosamide, I think in its own class of med. I started with 150mg 4x/day, then went down to 2-3x/day.
It took down fibro pain, joint swelling, chemical sensitivity and boosted energy when I first started doing it.
It's not even listed in the Burrascano guidelines and I think it should be. it's the only Lyme-treating abx I can take - I'm allergic to the rest, including doxy.
Posts: 13116 | From San Francisco | Registered: May 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
If you can get Bicillin that cheaply, you are lucky!
Some people get three injections a week, some four. I think I had three a week if I recall. It cost me about $1,500 a month so I got so deeply in debt I had to stop. But it may very well improve your fatigue. Many people have great energy improvements on it.
For what it's worth, I got horribly fatigued on your dose of Amoxicillin, but both my LLMDs said fatigue is not a common reaction for Amox so it was probably just me - or maybe it was increasing yeast. But I've also read and heard of patients who did much better at a higher dose, so maybe you could try that first.
I couldn't handle Mino either - made me more off balance than usual. That's very common.
Lots of good recommendations in the posts above. Hope you get some help soon.
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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sutherngrl
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Member # 16270
posted
I also did Flagyl and Zith together as a starting point.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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omgwtfbbq
Unregistered
posted
Jill, wow that's expensive! I found it online for about $500 a month (much much less if I wanted to use the cattle version, but that's 8mls every 3 days, no thanks!). I think I'm going to try the higher dose amoxi and flagyl first, but will do the bicillin if that doesn't work. If the anti-yeast diet doesn't kill me then then I should be able to survive this.
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