What to do?

[Kiahuna]

Greetings all,

First I would like to extend my gratitude and appreciation to Cort and the members of this community. I have found so much wisdom and information here.

I live in Hawaii and have found a lot of dead ends here in terms of treatment for Lyme and CFS. Like most I have been bounced from specialist to specialist until just about everybody throws up their hands. I am to the point of giving up, but I keep thinking there might be something or someone out there that approaches these illnesses with a different perspective.

Lyme disease theoretically does not exist in Hawaii, and I have yet to discover a physician that either acknowledges or “believes” in CFS. I have tested positive on the Western blot, so I believe Lyme is at least a complicating factor.

Is there a “western” style treatment facility available on the mainland that both accepts insurance, and that understands the intricacies of these ailments? I am willing to travel within limits, but unwilling to work with individuals who will happily take your $ while telling you what you want to hear (there are many here that will do that).

This is an extremely frustrating road to travel, so I give all of the warriors credit for their persistence!

Thanks for listening!

Mark

 

[Not dead yet!]

Hi and welcome, I'm about to go catch zz's, so look around in the resources and then chekc out MEPedia https://me-pedia.org/wiki/Welcome_to_MEpedia

That should get you started.

 

[Carl#1]

I am in a similar position with regard to lyme disease and testing. My doctor refused to do any testing because I did not have a ring despite immune dysfunction which could alter such a sign/marking. One in 3 people do not get such a marking! I have experienced neck stiffness since I was bitten and the extreme levels of exhaustion which I could always work around by not altering the foods that I eat. I would of been bed ridden for about 26 years and would probably of died of circulatory failure in that time.

Therefore I am going to treat it myself because the exhaustion since I was bitten by an insect has dramatically changed. At one time, just before I got bitten, I could prevent the exhaustion but since I was bitten I am having to constantly try to offset the cytokines which lyme promote. CFS also promotes cytokine release so it is making life extremely difficult. I did find that Green Tea and mung bean coat can reduce cytokines which should also help people with CFS.

I came across a number of essential oils which have been tested and found to be active against all forms of the lyme bacteria, including the stationary phase/persisters.

Identification of Essential Oils with Strong Activity against Stationary Phase Borrelia burgdorferi J Feng et al 2018
https://www.ncbi.nlm.nih.gov/pubmed/30332754
Selective essential Oils from spice or culinary herbs have high activity against stationary Phase and Biofilm Borrelia burgdorferi also by J Feng et al 2017. This was their earlier research.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5641543/
Garlic essential oil was the best. I have some and it is meant to smell extremely strong but I cannot say I have noticed without opening it. Some people commented that they could smell it without opening.

My plan is to make some liposomal essential oils and then consume them. I have done this with ceylon cinnamon bark and it was not all encapsulated because it did burn my throat a little. I started with one drop and worked up. I do need to improve the formula because I used some premixed lecithin that I use daily but I used filtered water rather than distilled water like should of been used. The pH should also of been adjusted to 6-6.5pH to maximize liposome stability. The problem with the cinnamon liposomes that I made was that I left a small amount in the fridge and when I went back to finish it off after about a week the oil had leaked out of the liposomes. Antioxidants are meant to help such as vitamin e but finding a pure vitamin without sunflower oil is difficult. The fluidity could also make it difficult to use because it is very thick and does not pour easily.

How to make liposomal essential oils
This site lists some different essential oils for mycoplasma infections which can be a lyme co-infection.

Essential Oil Safety which is a good book to check for toxicity of essential oils. I have checked all the oils that I intend using and I left a few because of potential toxicity issues.