posted
I swapped antibiotics (biaxin for doxycyclene) twice for 3 months each time, and felt better on the doxy, but my doc keeps me on the biaxin and im taking 3x500mg's of biaxin and 2x200mg's plaquenil every day...been doin that for almost 3 years and im not any better. anyone have any advice for me? Today is my first day here so im a bit green. My doc did say no supplements except for the yogurt pill. He is supposed to be really good but I havnt seen anything!! And no blood tests since my initial finding of lyme. Arent i supposed to have a test for cole infections?? Heard that today from a friend with lyme. Im so ready to try something else, I feel like im going insane, but I now know there are a lot more like me here!
thanks to anyone who has a minute to give me any advice!
[ 27. November 2006, 06:06 PM: Message edited by: Lisa J. ames. ]
Posts: 3 | From massachussettes | Registered: Nov 2006
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liz28
Unregistered
posted
My Lyme maintenance is:
Omnicef 300mg twice per day Ketek (telithromycin) 400mg twice per day
Liver support:
Dr. Zhang's Hepa Formula 2 if cost is not too much Schizandra Milk thistle N-acetyl choline Vitamin E CoQ10 Phosphatidylcholine (refined lecithin)
Yeast:
Nystatin 2 tablets, 3x per day Probiotics Coptis herb extract (goldenseal also okay, key ingredient is berberine)
I've also done cyst busting with flagyl, and have done treatments for babesia and bartonella.
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posted
The reason for the switch off doxy is probably because of the sun sensitivity. Mr. LLMD follows Dr. D's protocol and takes me off doxy in the summer months because he knows I will NOT avoid the sun.
I am currently on Tetracycline, just started it last week for the first time. My LLMD decided to give it a try even though I have GERD. Funny thing, it doesn't bother my stomach half as much as the biaxin does! Last winter I was on doxy, plaquenil and biaxin.
I also take weekly Diflucan and daily acidophilus. Seeing some progress - slow but sure.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
It's me. Make sure you don't mention doctors names on here.
Go to the newbie link and you will learn alot.
Good talking to you last nite.
love and prayers coming your way.
karen
Posts: 151 | From Massachusetts | Registered: Nov 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
The only antibiotics you have been on for Lyme are Biaxin and Doxy? I have never heard of an LLMD using such limited antibiotics.
Most people need to be on a cyst buster at some point and on something that crosses the blood-brain barrier. Plus, has your doctor mentioned co-infections?
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
My advice: Read Stephen Buhner's book on " Healing Lyme" .
There are others here who feel adding the herbs is truly helping . I just ordered the book thru amazon - used .
You might look into minocycline , which supposedly has deep tissue pentrating properties , and also samento / cumanda protocol ( Cowdwen protocol) . I have read multiple posts from folks who improved using andrographis and artemisinin after reading Buhner's book .
This is a save yourself disease , and I honestly think you have to try a variety of tools to get long term results for most people.
I am also impressed by the number of people who post that rife machines have helped significantly when ABX failed.
Also , there is a salt /VIT C protocol that has also helped where ABX Failed . Good luck !
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi, dear, and welcome.
First, click that little "pencil" above your post, and change the doc's name to "Dr. D" or "Dr. ____." Sorry but lyme docs get a lot of persecution and especially lately so we have to only use their initials.
Now. I've heard your story from LOTS of people.
I think this particular doc believes in almost a monotherapy kind of thing. There's no doubt he's a brilliant doctor. However, most other LLMD's treat lyme quite differently than he.
Most other LLMD's WOULD test you for co-infections. I don't know how Dr. D proposes that they go away -- maybe on their own?
If I were you, I would be thinking about finding another LLMD if after three years I hadn't seen more progress. And ESPECIALLY if I hadn't even been tested for coinfections. Because that can seriously hold you up.
I wish you luck.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I was in a similar situation. I found a new LLMD who'd treat me for co-infecs clinically. Made progress in a few weeks. My response to Babs treatment was significant. There's nothing wrong with a 2nd opinion.
Be your own advocate. If you're not making progress broaden your scope.
Lots of other things to consider as well; Mold, viruses, parasites, metals etc.
For many of us who don't respond to just Lyme treatment, Chronic Lyme may be more than just treating Lyme.
[ 28. November 2006, 11:40 AM: Message edited by: Foggy ]
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
Hi Lisa, Join the club! I bet your ankles hurt too?? I alot of us at reached a similar situation. I tried a different LLMD, but the orals just didn't cut it for me. However, you should find the Flagyl/tinizole family very effective for you. I did after a similar routine.
You might want to get a 2nd opinion from another LLMD. Dr. D is great, but he will only get you so far in my mind. You must take the next step.
I ultimately opted for the rife route. I rife once a week for about 30 min and I am fine. Rife won't cure Lyme(although, it might over time), but you can co-exist nicely with the declining bacteria while you are getting better. I bet that is more than you can say with the abx? Went skiing over Thanksgiving and hold down a full time job.
Something to think about!
Ernie
Posts: 546 | From Cascadia subduction zone | Registered: Mar 2002
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posted
I'm seeing Dr. D. He has me alternate every 6 month approx. Winter tetracycline, summer Placquenil & Biaxin. He says to switch a little earlier if I feel the drug isn't working as well. He says it usually gets less effective around the 6 month mark.
This time I've stayed with Plaquenil & Biaxin for 7 months and really need a change. I'll go back to tetracycline in a few weeks after I get through some work deadlines. Never know how hard tetra will hit. It does kill a lot of Lyme.
I'm continuing to get better.
Seems odd he hasn't switched you. I thought he switched everyone. hats
Posts: 956 | From MA | Registered: Nov 2004
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posted
One thing to know with regard to Plaquenil is that it is an immune suppressor. That is why it is used in cases of Lupus. This may be impacting you in a negative way. I too, am shocked to hear of this regiment you are on - THREE YEARS of the same drugs? This is very uncommon.
Take a look at the Burrascano protocol. This may be helpful for you, and enlightening in terms of another approach to treatment.
Warmly, and best wishes,
Anneke
Posts: 364 | From California | Registered: Sep 2005
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