I can tell you really don't want this! At all! Nor do you want it to have to take as long as it may take!! Neither do I!!
In my case, I have become under the impression that some of this is permanent damage...I have had it untreated a loooooooooong time!
I am trying to weigh out the risks and benefits with reason.
I did one month of mepron/zith and my specialist, whom I trust very much as being one of the forerunners in treating this disease...says I should do three more months of it!
I have stopped abx for two full weeks now. I did wormwood for awhile and had a hugely intense herx in my heart from it...and nerves.
I am trying to reason this out realistically. I have the idea that even if I reamin on abx for the duration of the cycle it takes for the spirochette to grow itself....a year to two years....does not guarantee the success of a completed treatment and I have decided that I am not willing to compromise my organs and intestines and other things for that elusive promise. Especially considering the very few success stories I have heard from long term abx therapy.
However, I have not fully decided yet. I may continue the mepron/zith, starting back up in another week or two. But this disease and coinfections is everywhere in me including body and mind.
Of course I don't want to regress back to where I was and the abx without a doubt saved my life. But after 6 months, the progress is sooo minimal!
posted
Rob, it's more about finding the antibiotic combination that works for you. A lot of what you have mentioned taking in the past might be considered "first line" treatment. Any sensible doctor would try these antibiotics before moving on to heavier treatments, but they are also very weak in terms of choices available.
Many of the treatments described on Lymenet are based on Dr. B's protocols, and he updates them dramatically every couple of years. For me, the best element of his earlier protocols was combining a cephalosporin with a macrolide and a cyst buster for Lyme. I've used a bartonella protocol used by three other LLMDs, but not Dr. B. And I've put together my own babesia protocol from a million hours of research. While I'm not interested in alternative or natural treatments as the basis for treating Lyme and the co-infections, herbs and supplements have been lifesaving in terms of counteracting the physical damage done by longterm antibiotics.
Dr. B's 2005 guidelines are terrific, so you may want to start reading those if you want to go for more extensive Lyme treatment. Even if you respond to a different set of specific antibiotics, as many people do, you will still get a model for treatment that seems to have helped many others.
The level of panic you express in your Lymenet posts is very familiar. So is the desire to hold back from taking extreme antibiotic treatments if you don't have to. If you do go this route, please allow a strong personal suggestion of dropping the need for a perfect doctor, and doing your own research as if your life depended on it. Trust is the basis for having a workable medical establishment--modern medicine wouldn't work if patients questioned their doctors on every little decision--but the era of absolute faith in doctors, as if they were your parent or friend, is over. The good ones don't have time to read every single update in the medical field, and the bad ones have enough desperate clients to stay in business for life.
When you visit an LLMD, one of the benefits you are paying for is a doctor willing to try certain antibiotic combinations. So research the antibiotic combinations, then go in and ask about them.
While most of this is all about personal opinion, since we are learning as we go around here, you should know that biaxin/plaquenil was surpassed by ketek about two years ago as a macrolide. There are other drugs besides plaquenil that can give you an anti-inflammatory response, that haven't been implicated in causing permanent blindness.
Around the world, the most common treatment I could find for relapsing malaria is chloroquine/doxycycline/primaquine. Chloroquine is NOT the same drug as plaquenil, which is sometimes prescribed as a malaria preventative, but not as a cure. Prior to the arrival of chloroquine on the scene, quinine was the most commonly prescribed malaria drug, even though the side effects are horrific. Unfortunately, chloroquine has been overused and drug resistance has developed in many countries. This is why so much excitement has arisen over artemisinin.
Here are the drugs you may wish to look over in your research. Some of these are what I use. Some of them, I used to use and saw partial benefits, no benefits, or--in the case of minocycline and levaquin--side effects that were worse than the disease. But all of them have been extensivey discussed in the Lyme community, or on enough other websites to warrant consideration:
You must take liver support, probiotics, anti-yeast drugs, omega-3s, and vitamin supplements with all these drugs. And again, these all need a great deal of research, since LLMDs are prescribing a wide array of dosages and combinations, and you should have some background before you just take anything.
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
painted turtle - Progress is slow. I went undiagnosed for at least 13 years ... like you lyme and whatnot spread everywhere.
My whole body seemed like it was just one big infection...
I have been in treatment awhile. I have made alot of progress- and yes it has been slow for me too. I still have a long ways to go before I can work... but I am finally starting to have days where I feel human agian.
Please dont give up on treatment. When my fingers were crinkled for almost 2 years straight ... I was pretty sure that was permanent.
But now I can straighten them... so you never know ... sometimes we think things are permanent damage and it isn't.
This disease always keeps us guessing - How long to we get better - will we recover completely - will we have lasting effects - will we relapse
.... just an endless stream of questions with no definite answers.
Please try to be patient with the process... progress can be slow ... but progress is progress... and it is much better than the alternative....
Staying at that state of sickness or getting worse.
I think we have to have some faith in our llmds. I am not saying we shouldnt be involved in our treatment. But I think some degree of trust is needed.
Maybe if you don't have that you could find a new one.
Rob -
Once I found my llmd I have stuck with him. But he has saved me.
Once again you have to realize that treatment may be slow and try to find some pateince with it.
Having said that.... I beleive you mentioned before something to the effect that your llmd doesn't address coinfections...
that would make me nervous.
I think it is a good idea to switch if he doesnt treat them.... especially if you are not making much progress...
Because while it is true that many of us make slow progress... sometimes a coinfection seems to be th cause of the sluggish progress.
- These are just the opionions of a fellow lymie who has been dealing with lyme symptoms and treatment quite awhile.
Thanks azure, I am really struggling with how to proceed, but I will not stop treatment!!
I just may stop antibiotics for some time to see if herbs and other more natural remedies and my own bodymind can do something for itself now that the extremely green part of the infection has been addressed by the 6 plus months of abx.
It is not an easy call to make. At all. I do not even really know if abx therapy is totally proven, except that from my own personal experience so far...it has shafted a razor difference into something very thick! (if that makes any sense).
posted
I had to change 5 times. I am one to keep going if I dont see the results I expect...
The one I have now I am very pleased with but I had to do a lot of leg work and researching/ networking to find a Dr and combo of treatments that will work for myself.
Posts: 437 | Registered: Sep 2004
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posted
Rob - I just wanted to add to my post that treatment takes time. So when you find the right LLMD, it will be 2 steps forward 1 back for a while.... But you can get there.
I also would not just do abx alone withouth some sort of holistic treatment involved...
Abx are nessesary but you also have to adddress your immuen system and candida issues which go hand in hand with anyone with chronic illness...
best of Luck, and dont give up.
Posts: 437 | Registered: Sep 2004
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Lymelighter
Frequent Contributor (1K+ posts)
Member # 5310
posted
quote:Originally posted by BostonLyme2005: Hello,
Have any of you had to change your LLMD in order to begin seeing noticable to remarkable results?
Did you find co-infects were keeping you from progressing?
Yes big time! Had to find a LLMD who would treat co-infex based on clinical and diagnostic findings. Needed an abx & antimalarial regimen tailored to my specific sxs, not a 1 or 2 abx fit all plan. Made more progress in 1 week then I made with months of treatment elsewhere.
Don't forget about metals and parasites, too. Made a big difference for me.
Posts: 1010 | From Mars | Registered: Feb 2004
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