Let me preface this with my doc is LL and his brother, in the same office, is a leading expert on the east coast treating lyme.
He wasn't interested in putting me back on antibiotics. I don't have my numbers but, last fall I had a positive test but, he said it wasn't very high. My next test was negative. He didn't seem to concerned. I have multiple symptoms though and am not sure if they are lyme or something else.
He has me on multiple supplements trying to help my nutrition and immune system. He also told me about a patient who thinks they are suffering from lyme who started on that vitamin C and salt treatment who feels much better.
So, I go looking it up online and find some good stuff but, then look here and find nothing very positive about it.
Has anyone had good success with this or other natural treatments rather than taking all of the antibiotics. I worry about the abx causing liver damage as well.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You are wise to learn all you can about the salt & Vit. C. plan. Others here can offer more information. The last link below for the rife site will lead you to a book that details the Vit. C. plan.
You might also do a search here as there have been many threads in the past.
I apologize for so much material here - but as you are searching, it's important to consider all of the sources below as a start. And, I'm sorry that I'm not great at being very concise. I tend to want to be sure you have all you need for a decision.
Below are a couple of the leading books - the ones by Buhner and Zhang may be more of what you looking for as they are well-researched and very detailed. Each is very different regarding particulars - but each excellent on its own. You'll probably want to read both and compare.
And, sometimes abx are incorporated. If proper liver support (milk thistle) is used and prevention of candida with probiotics and antifungal Rx or supplement, abx can be safer.
But I'd first begin with getting a LLMD who will further assess your condition. If you have coinfections, the order of treatment matters.
Have you EVER had a bulls eye rash from a tick bite? Not all lyme patients do but, if so, that is clearly lyme.
However, you said " . . .last fall I had a positive test . . ."
Well . . . that seems to say a lot if you have symptoms which are obviously troubling enough to bring you here.
I think you are wise to look further.
You may say you've had communication with top LL doctors, but from what you say about "numbers not being high" - well, lyme tests are not that way. Something does not sound right. I'm not sure you had the correct tests.
You said you were treated with antibiotics (abx) but for how long?
And with what abx? Was it a combination approach?
Co-infections assessed?
A western blot is best - an IgG and an IgM - and you need to be assessed for coinfections (other TBD or tick-borne disease).
Follow-up tests for lyme just don't work as in other infections.
Whatever path you take - or rotation - treatment has to be continued for a certain length of time - and beyond - to about two months past the time a patients has no symptoms.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
=====================
`` . . . the immune system does not begin to repair itself until the beginning of the fourth month of . . . treatment. . . . ``
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
poster's note: while few get well without attention to nutrition and supporting the liver and adrenals with specific supplements, anyone considering complementary approaches should be sure to have first read the abx protocol for a better grasp of the task at hand.
Excellent diagnostics by a seasoned LLMD would be of great benefit. From there, various avenues can be explored.
Basic, supportive herbs to "get the body stronger" are NEVER enough to get over lyme or coinfections. Very specific attention must be paid to the nature, life-span and forms of each tick-borne disease (TBD).
Each infection is treated differently and it is no minor undertaking. It is best to seek guidance with skilled professionals who are truly lyme and TBD literate. They will know, specifically, how to proceed.
The books by Zhang and by Buhner are excellent in that they both understand the difference between support supplements and agents that will directly affect infection. Each offers research to back this up and each will incorporate abx when needed - just as many LLMDs incorporate some of the supplements found in these books.
They also know enough about how Rx affect the liver to work for protection or offer other options.
===================================
to better understand the process:
Biofilms of Borrelia burgdorferi and Clinical Implications for Chronic Borreliosis - Alan B. MacDonald, MD
May 17, 2008 University of New Haven Lyme Disease Symposium New Haven, Conn.
A Bulletin board for lyme patients interested in or using RIFE.
you will find Rosner's two books here. One about rife (and so much more great information) . . . and it the "Top Ten . . ." you will find details about the salt and vitamin C approach.
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
Topic: Parvovirus B19 should be included in Lyme differential Dx!!!!
AliG - posted 12 October, 2008
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[ 13. October 2008, 02:33 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I would like to try the salt treatment but can't due to high blood pressure, kidney and liver problems.
I understand it can be pretty tough on some people, do I'll just keep on researching alternative treatments.
Wish I could afford those lamps.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Yeah, I just came back to add the Bionic info.
the lights Randibear mentions are about the infrared / photon light treatments.
A search here for "Bionic 880" will bring up many discussion threads about a promising treatment being done in Germany - with no Rx.
While not everyone has had the same results, there are many who have reported great benefit. There is much reading at the threads about it.
Hopefully, this might be more available soon in the U.S., but if there is anyway you might be able to travel to Germany for 3 or more weeks, this might be something to consider.
Addressing heavy metals and liver detox support are still part of this technique as will all lyme treatments. So, it is more than just 3 weeks, but that is the key time with the doctor.
With all things considered, the cost would be less then many abx treatment protocols.
posted
Its been my opinion, and perhaps the only one on this board, that there should be an evolution of treatment for lyme that includes natural treatments.
I think its probably best to hit the lyme hard at first with the different prescribed abx, then add in the natural supplements, then have the abx fade off over time, leaving just the supplements.
I dont know if it will work or not, but its my hope that you can eventually live a life without abx, and instead just take supplements to boost your immune system so your body can fight it on its own.
Ive been taking olive leaf extract, oregano oil, additional Bs, D, magnesium, probiotic, daily vitamin, coq10, fish oil, digestive enzymes.
Ill know more in another week when I see my LLMD. By then Ill have run out of the abx and will just be taking supplements.
btw: As of today...5 mos on abx (2 mos-doxy; 3 mos-omnicef, biaxin, tindamax).
Posts: 514 | From . | Registered: Apr 2008
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posted
I've had good results with alternative treatments also.
Gail
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Yes, I am also a huge fan of natural medicine. I just want to be sure, though, that the distinction is made between support formulas and antimicrobial formulas.
Using natural products still requires a lot of science. What works for the particular infection at each stage? Combination treatment is still the gold standard - and rotation of formulas.
Lyme evades the immune system. So, just trying to "get the body stronger" or boosting the immune system will not work unless the infections are specifically addressed by specific measures. There are many good natural choices for this, as outlined in the books above.
Also a note of caution for avoiding anything that offers to "boost" either the immune system or adrenals (to supply a surge of energy). Gentle support is key.
Natural medicine can, when needed, be combined with pharmaceuticals by a knowledgeable doctor. But make no mistake, some is very powerful in its own rite, used correctly.
And, all natural medicine still deserves the same respect and attention to detail regarding protocol directions and also with self-care.
Another formula that I was just reminded of is a formula called SpiroKete by Kroeger herbs. Very impressive.
It is best to consult the experts in this field. The Buhner book and the Zhang book are each a great place to begin.
posted
i am on salt c and feel great. also rifing. check out lymestrategies. it works. good luck
Posts: 82 | From philadelphia | Registered: Aug 2007
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
I also used salt/c for a time and felt it helped me with certain aspects of LD. I do not feel that it is an all-encompassing treatment, however. But is was one of several solid stepping stones, in my case, back toward health.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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