What are people's thoughts/experiences for treating chronic lyme with just doxy. I had always had the impression this by itself wouldn't be enough for chronic lyme, but just went back at Dr. B's 2008 diagnostic hints/guidelines document (now 4 years old), and it doesn't really say that, so I'm not sure where I got that impression.
Has anyone been given just doxy by someone they believe to be a competent ILADS style doctor? Has anyone seen or heard of it get somebody better from chronic lyme, without use of any other abx?
Posted by Lymetoo (Member # 743) on :
I know someone who's been on low dose doxy for 4 yrs and is still sick, so I don't know.
I would think you'd at least need a cyst buster with it.
Posted by jackie51 (Member # 14233) on :
That's all I'm on right. Can't bear to go outside, blister too easy. I was out for 5 minutes yesterday, completely covered up. My cheek is slightly blistered now.
Next check up it will probably get switched out. Not being in the sun gets me too depressed to function.
Posted by MichaelTampa (Member # 24868) on :
That is one thing he mentioned in that document, is that it is only bacteriostatic at low blood levels, and doses of 600mg daily is often needed.
Posted by t9im (Member # 25489) on :
Hi Michael:
In everything I've read doxy is great for the spirochete form BUT the spirochete forms cysts with biofilms to protect itself which the doxy doesn't touch.
A cyst buster lime Tindamax will be needed.
Dr. Eva Sappi has done grear invitro research on this.
Of course the IDSA don't believe in cysts so this too is part of the controversy.
Posted by Keebler (Member # 12673) on :
- Exactly as t9im and TuTu explain, Doxy is NOT enough. In fact, in just 20 minutes, doxy can make spirochetes go into the cyst form.
I'd like to see Flagyl (or other anti-cyst agent) first on board and well circulating in the body - BEFORE doxy would be swallowed.
But, I'm not a doctor. I just think that doxy being the first and only Rx for most, it's very damaging in ways most doctors just can't comprehend.
Michael's correct about the dose, too. Most get far too low of a dose.
jackie, you might ask for a different protocol if being in the sun is that important to you. Seriously. There's always another way. Just ask.
But, minocycline or zithromax can often cause more inner ear side effects. Liver support is most important with those to help protect the ears.
Can you find large areas on the shaded side of buildings or under trees where you won't get either direct sun or bounce-back that can burn? -
Posted by t9im (Member # 25489) on :
Only got worse on doxy, never better
Posted by back2game (Member # 23927) on :
4 weeks of doxy., only 200mg qd, brought most of smell back and the ability to use my left shoulder again. It was completely frozen and couldn't lift arm.
Since the doxy. been on others, but I remember the above very clearly, even though it was back in '07.
I'm 7 months off everything, but if I were to start going downhill, I would want to start it up again. It was the only antibiotic that didn't destroy me.
Posted by Catgirl (Member # 31149) on :
Someone was talking about this at the ILADS conference in October. I believe the LLMD said that taking just doxy will cause more spirochetes to turn into cyst form.
Posted by MattH (Member # 30846) on :
Our ILADS doc is using just doxy for my sons. However one of them does take a pulse of Flagyl a couple of weekends a month.
I am on mino and I also take zith and pulse with Flagyl. I had to back off and take only mino because of higher liver enzymes. I have been doing caster oil packs to bring the pain down and took two days off all meds.
We are off to see the doc in a week for my son that has been on doxy for just 2 and 1/2 months.
All the Best, MattH
Posted by jackie51 (Member # 14233) on :
Greeeaaat, now I have cysts. I was on ceftin. I should've left well enough alone. I'm sure at next week's appointment I'll change out.
I would say something got killed with the doxy though because the first week I was on it I felt like cr*p.
Yes, I must have sun, especially in the winter. I should've thought about that more closely when I went on doxy. I just thought the Ceftin was loosing it's punch.
Posted by Catgirl (Member # 31149) on :
That's alright. If you're herxing on it, then it's doing something. Your doc will give you something to kill the cysts off next time you see him (no worries).
Sometimes I think the lyme docs are just fried (overwhelmed).
Posted by Rivendell (Member # 19922) on :
I have heard of people who just stay on Doxy and recover 80% to 90% of who they were before they got sick.
But, they had to stay on it. When they go off they get sick again, because Doxy alone won't kill the cyst form.
Still it is inexpensive, and for some people, this may be the best approach, depending on their circumstances.