Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
As I have mentioned before, when I first started treatment with an LLMD in 3/05 my condition deteriorated rapidly.
I was put on 800mg Ketek daily, plus 1/2 a Plaquenil twice a day, and 400 mg of Cedax daily.
There was some change of antibiotics over the next year, but nothing significant. Doryx replaced the Cedax.
Flagyl was the last straw as of 3/06. No matter how little I took, I got sicker.
Once all the antibiotics were stopped my condition stopped worsening. I have been on a holistic approach since July of 2006 and have been holding my own, seeing some slight improvement.
I believe my system was overloaded with neurotoxins which caused my declining condition.
I would be interested to know what you think.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I'm a newbie so really not the one to be answering. I'm still learning.
You mentioned you have moved to the holistic approach. I was just wondering if you could elaborate a little on that.
I'm working on four weeks of treatment since yesterday and my LLMD has me doing abx and Zhang, which is why I wonder about the holistic side.
I know my LLMD isn't letting up on the abx side but does seem to work both angles at once. Hopefully someone will come by that is more experienced to answer your question.
For now, I was just wondering what holistic approach you are taking.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I am taking cat's claw and other supplements like AG Immune. When I say holistic, I really mean no antibiotics. My current LLMD says she has had much success with this approach with some of her patients.
I think it is helping me. I was on codeine based painkillers since the end of June. I stopped three weeks ago and now take about 2 Advil a day.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Sounds like we go to the same LLMD!!
I've been off abx and on Cat's Claw, AG Immune, all the Bodywise Vitamins, Mag and IM Mag for over 2 years now. I also used the foot patches every day for over a year.
IMHO - Abx are part of the program, but not the end-all to getting well. It's just one piece of the puzzle.
I have my life back. Our doctor used this protocol to get herself and family well and has so far been successful. Wishing you the same
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Lyme ravages the entires system. You can't get better without taking care of your body.
I made the mistake of trying. I ended up finding an integrative medicine specialist who I see in addition to my LLMD. He is treating my autonomic nervous system disfunction with supplements (vitamins, minerals, amino acids primarily).
He also got me on an herb, Cumanda, for the yeast which works better than any antifungal medicine I tried.
I still have a way to go, and I'm continuing abx. For me, I had a major relapse when I stopped abx, so I know I need them. But I believe that my body will get stronger and be able to respond because I'm building my system back up.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I wish we could all eat a bucket of ice cream.. and then at the bottom it would tell us all exactly what we need to help our condition.
Wouldn't that be nice?
My guess is.. you are right about the overload. Not sure it is "neurotoxins" as such.. but results of a die-off and/or what I call "medicine sick" from too much meds, too soon.
Clue.. after stopping meds you didn't continue to go down. The doses you were on MIGHT be ok for folks in some situations.. like those who have not had Lyme and coinfections a long while or those who are 8 foot tall and weigh 560 pounds.. but it can be HORRIBLE for others.
Unfortunately, our dear LLMD's don't have a magic bucket of ice cream to gauge our protocols on. Some feel they should hit it hard and fast in all circumstances... and some don't. There are so many variables.. so no one protocol will work for everyone.
Another problem I see..
We are all afraid to speak up and BARK.. and bite if we have to.. the LLMD's when we are totally feeling rotten. We MIGHT say.. "I don't feel too good".. or something nice and polite like that.
Think about this. If we were being splashed with a mixture of honey and vinegar everday by a kid on a bike riding past our front door as we walk outside.. we PROBABLY wouldn't be as "reasonable" about the situation. True?
But in our defense.. we have a good excuse. We FINALLY have someone who isn't a pumpkin head and who CARES... and who doesn't look at us like we are space monsters... so we will avoid doing ANYTHING to mess up the relationship and chance losing the only help we've ever had.
Anyhow.. my guess is the break from meds was the answer to your questions... and gave you "experience" to go by.
As the saying goes.. "Experience is what you get if you don't get what you want".
Good to hear you have changed tracks and are doing better.
And do note...
NEVER go past what YOU think your limits are. EVER! YOU must be the judge of YOU!
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