Books that helped me were: How can I get better by Richard Horowitz
Hi
@DebInAustralia -- Great post! I saw a couple days
Richard Horowitz was in the news regarding a novel coronavirus treatment. I think it takes a good out of the box thinkers like Richard Horowitz to come up with safe and effective treatments for COVID-19. -- I just ran across something I wrote on some of my own Lyme research on another forum about 10 years ago, and thought I'd post it here:
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liquid sky said:
I tested positive per Igenex for Lyme. Treated for over a year on strong doses of antibiotics. I only got worse. I noticed a lot of the Lyme literate physicians are interested in HGRV's. They are looking for a way to treat those who do not respond to antibiotics. There are a lot of people who don't get better on antibiotics.
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My Reply: (Somehow the apostrophes got deleted when they transferred to a new forum software)
After getting a positive Lyme Disease diagnosis, some of my initial research indicated what you wrote above. Given how sensitive I am to medications, I was very hesitant to start any kind of antibiotic therapy until I learned more. This is some of what I learned:
1) Virtually everybody who has Lyme has a unique situation. There are several "well-known" Lyme bacteria infections, plus many more "co-infections". Some Lyme researchers estimate there could be as many as 300 different co-infections, with many of them yet unknown and unidentified; each individual generally has "several" co-infections. Certain antibiotics just have no effect at all on certain co-infections, so if a doctor doesnt follow through with a unique combination and delivery of antibiotics, then they may have little to no effect. Plus theres the possibility of a person getting worse.
2) The well-known Lyme bacteria can be in three different forms; a) spirochete; b) cellwall-deficient form; and c) cyst form. Antibiotics work best (perhaps exclusively) on the spirochete form; they are affective because of their ability to disrupt bacterial cell wall replication. Antiobiotics also work best when spirochetes are in the bloodstream, and not embedded in the muscles, bones, teeth, joints, neurological system, etc. Thats why its so important to treat new Lyme infections with antibiotics as soon as possible, to eradicate it before it has a chance to embed itself deeper into the body.
If it does get embedded deeper into the body, it is then called chronic Lyme. Conventional doctors generally believe there is no such thing as chronic Lyme. Most doctors will treat for Lyme if a patient presents with a bullseye rash, and a positive test for Lyme. But if the person doesnt improve after 30 days, they often conclude they never had Lyme to begin with. This is because ISDA guidelines say all Lyme bacteria will be eradicated within 30 days using antibiotics, though there is apparently no scientific evidence to support this thesis. Thats why so many with chronic Lyme seek out an LLMD.
3) Various things going on in the body can prevent antibiotics and other treatments from working well. I read of one instance where a young girl was not making progress on antibiotics, so they did a little more searching, and discovered she had a serious pituitary gland deficiency, or something like that. Once they corrected this, she started making steady progress. Unfortunately, Lyme, similarly to CFS, generally disrupts the HPA axis. I can see that in some instances at least, an HPA axis dysfunction could prevent a person being treated for Lyme from making good progress, or any at all.
4) Focal infections: Many people have unresolved focal infections in their bodies that can cause major disruptions in a persons health. These can result from failed root canals, and other types of oral surgery that was not properly done or that developed complications somewhere along the line. There are many people who have recovered from their ME/CFS just by treating these kinds of infections. So if a person had both Lyme and an oral infection, treating the Lyme alone will not resolve the accompanying focal infection issues. These focal infections are not only oral. They can also settle in the gallbladder, joints, major organs, etc.
5) Detoxification Issues: When Lyme bacteria are killed, they release high levels of neurotoxins. If these neurotoxins are not efficiently eliminated from the body, it can be major obstacle to improved health. Detoxification issues are even more critical for those with a methylation cycle block, which it appears most of us with Lyme and/or CFS are dealing with.
6) Chronic infections of all kinds can do a lot of damage to the body. If a person is to treat Lyme successfully, this damage needs to be identified and effectively addressed in order to achieve better health. If a person is left with a disrupted HPA axis, adrenal exhaustion, liver toxicity, etc., theyre still going to be dealing with major health issues, even if the Lyme bacteria has been eradicated.
These are some of the factors Im considering as I embark on my own Lyme treatment journey. My descriptions may not be totally accurate, but I think theyre generally pretty close to what Lyme patients are dealing with. Im no expert on all this, and I know there are other factors that may be just as or more important than the ones Ive listed. I guess a main thing I keep in mind for myself is that this is all very complex, and Lyme patients will have unique situations that will result in a number of circumstances with treatment needing to be adjusted accordingly. Which again, is why most people with Lyme seek out an LLMD.
But LLMDs vary considerably as well in the approach they take, and their competency. Many have not heard of, or do not use Rife machines. While Ive heard of many getting well on antibiotics alone, Im not convinced all were successful in completely eradicating some of the deep seated Lyme bacteria. It can lay dormant in cyst form for long periods of time, only to attempt to migrate and emerge back into bloodstream when immune system vulnerability allows it. Thats why people who choose to use Rife machines will do it regularly, long after they feel completely well. It can kill these dormant bacteria when they emerge from their sanctuaries.
I hadnt expected this post to be so long. There are no easy answers to this complex disease, and many who study it have disagreements about many things, including treatment strategies. In the end, we all have to choose what we believe is likely to be true, and what we feel is right for us. In my case, I dont know what percentage Lyme Disease is contributing to my health issues. I guess it could be relatively little, but then again, it could be as much as 90-100%. Since Ive read of many people with Lyme making significant progress after beginning treatment, Ive decided to focus on that, to the somewhat exclusion of pursuing other avenues. It seems many people treating their Lyme end up experiencing significant improvement in their health; most people with CFS dont.
Best Regards...
Member
