ideas for alternative techniques

Hi all,
i've been battling LD for almost 3 decades...ugh! i'm interested in hearing about any alternative approaches others with lyme have tried and found helpful...at this point i'll try anything as long as it's relatively safe and inexpensive!

[slippedup]

I just read a report by Dr. Scott Taylor DVM who also has Lyme Disease. Its 44 pages long but is is highly informative. Near the end of the report he lists what seems to be many good natural options for treatment. I just posted a few minutes ago on this forum as i think my 21 year old daughter may have this disease. I wish us all good luck...

[Gaucho25]

Hi, how long did drs. took to diagnose you with it? have u done the traditional antibiotic terapy?? did it work in some way???

[wonko]

I haven't done much in the way of alternative treatments but along those lines I'm trying to keep an open mind to other causes of my persistent symptoms.  I think it gets easy to blame everything on the Lyme and not appreciate that being sick for a long time can cause secondary problems that need separate attention.

For example, I've developed myofascial pain syndrome, which involves the development of tough bunches of inflamed muscle.  I have lots of these, like several dozen, in my back and shoulders.  No amount of antibiotics will fix it; unless I get physical therapy it will persist.

I'm also getting some adrenal testing done as one of my worst persistent symptoms is a devastatingly fierce afternoon fatigue...

[JackieCalifornia]

Bryan Rosner has put out quite a few books and videos and youtubes discussing alternative lyme etc treatments. He's not medically trained as far as I know but has put together some interesting data. I have a few of his many books, which seem to overlap at a certain level, and you might take a look at one called something like "top 10 lyme disease treatments" if yours interested in going off the allopathic track of lotsa antibiotics.

[carrie235]

Hi Clyde:

Like Jackie said, Bryan Rosner has his own theories. One of them is using a Rife machine which I believe uses frequencies to kill the bacteria.  A lot of people swear by it and the owner of my local health food store says she cured herself of lyme with Rife and supplements.

I don't know a lot about other natural supplements because I am only using my ABX at this time, but I've been reading that about a product called MMS.  Don't know anything about it, but a lot of people in the Lyme and Rife community are using it and having good results.

I have a Rife machine, however, I have not used it yet.  Don't even have it put together yet as I received it only a few weeks ago.  I am also using an Infrared sauna which I just started using.  I want my body to adjust to that before I go and add the Rife so it may be another month or so before I can report on that, but I will.

Keep us updated on what you find!

[wonko]

Ummm, "MMS" is the name given to a "cure" that is nothing other than chlorine dioxide.  While useful in industry for the purpose of bleaching wood pulp, I would not suggest that anyone ingest the stuff.  In my opinion, this stuff is dangerous snake oil.

A quick internet search for the MSDS (material safety data sheet) for ClO2 in 0.054% solution, weight per weight in water (which sounds like a low concentration, eh?) suggests immediate medical attention if this stuff is ingested.  (Though it lists ingestion as "Not a normal route of exposure," because they are assuming that no one would willingly swallow the stuff!)

Other highlights include:

INGESTION: Not a normal route of exposure. Harmful if swallowed. Can cause irritation to mouth,
esophagus, stomach, and mucous membranes.
SKIN CONTACT: Corrosive. May cause redness and irritation.
EYE CONTACT: Contact causes redness, irritation, pain, blurred vision, tearing, corneal injury and burns.
INHALATION: Harmful if inhaled. Coughing, headaches, labored breathing, nausea, shortness of breath,
pulmonary edema.

And from wikipedia entry for chlorine dioxide (which I know is "use at own risk" information, but often a good starting point for researching a topic):

"On July 30, 2010 and again on October 1, 2010, the United States Food and Drug Administration warned against the use of the product "Miracle Mineral Supplement" or "MMS" - which when made up according to instructions produces chlorine dioxide. MMS has been marketed as a treatment for a variety of conditions. The FDA warning told consumers that this industrial bleach can cause serious complications, including severe dehydration, nausea and diarrhea. There have been no reported deaths from use of MMS; however the FDA has received numerous reports of nausea, severe vomiting, and life-threatening low blood pressure caused by dehydration."

[carrie235]

Wonko:

WOW!  Glad I didn't order any!  Just what we need...another problem.  Thanks!

[clyde97]

thanks for the info...i'll definitely read it!

[clyde97]

thanks for the suggestions everyone!

[clyde97]

i first got sick in the mid-80's....my pediatrician at the time couldn't figure out what was wrong with me. my mom happened to read an article about lyme and ask that i be tested...i was sick about 4yrs before being diagnosed and never had any significant improvements with antibiotics.

[Gaucho25]

Hi, but how long were you on antibiotics?? What are your symptoms?? did they get worse? Did new symptoms develop throughout these years??

[BeanBandit]

Wonko you might want to try adrenal health by gaia herbs also thyroid support by gaia herbs.... I've been taking it for a couple years for that..... another one that has helped it seems both for fatigue and for lyme is the olive leaf also by gaia herbs it has also helped me with a better sense of well being in mood.  A natural antibiotic is grapfruit seed extract.

[wonko]

Thanks for the ideas, BeanBandit.  I see my LLMD next week and should have the results of some adrenal tests, and I'll be sure to ask about the herbs you mention.

I also wanted to add in response to the original question about alternative treatments that I had some success with samento, which my LLMD had me start on a very low amount (1 drop/day) and work up to 15 drops twice a day.  I don't know how effective it would have been alone, but my LLMD had me do this before starting abx to "soften the blow" of starting treatment.

[clyde97]

i've had numerous rounds of antibiotics in so many different combinations of oral and IV. many treatments lasted for several months. my symptoms have fluctuated in kind and severity over the years...for instance, i was wheelchair bound for about 2yrs and then had a year when i was working out in the gym 4 and 5 days a week. i've also had symptoms, such as heart palpitations, that would stick around for a few years and then disappear. lately, my main complaints have been fatigue, muscle and joint pain, migraines, trouble concentrating, and memory loss.

[JackieCalifornia]

A stray thought:  how is your thyroid function?  Lyme can really mess it up, as I have learned.  Many symptoms I thought were Lyme have gone away now that I'm on thyroid meds.

I have learned that some docs treat only with levothyroxine (T4), which your body is supposed to then breakdown, but some people can't do the breaking down part, and so need to also supplement with Cytomel (T3).  It is working great for me.  

Testing for thyroid function is a little dodgy, because the levels of hormone in your blood naturally fluctuate during the day and night ... I don't know what they do to compensate for that while doing the tests to get an accurate read.  The old fashioned way of treating thryoid deficiency was by trial and error, since it's a complicated feedback loop in the endocrine system, but now docs seem to like to go with one size fits all, which of course it doesn't.  I'm lucky that my doc watches results and adjusts from there.

Just a thought.