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Posted 7/28/2019 10:45 AM (GMT 0)
Hi, I'm supposedly a cfs person but I have wanted to look into lyme for a long time.

Male, 50's. Brief history, onset in 20's similar to viral/post viral syndrome and spiralled downward. 1 year prior I had severe reaction to minocin. Had brief early success with levothroid but after it stopped working I became disabled. Went on a journey with natural medicines, diet, etc. Found severe gluten intolerence, systemic mercury, parasite, impacted large and small intestine. Currently doing some ray peat diet ideas, a bit of iodine, magnesium, and doing fairly well, but not cured by a longshot.

The past few years my joints and bones are bad, scoliotic lumbar started maybe 10 years ago. Rainy weather really aggravates joint symptoms, and I have burning sensations in lymph and some joints - this was also a symptom that appeared at onset a long time ago, and makes me suspect lyme or babesia. Also have oxygen starvation as a major symptom, but also a long term dry cough. The thing that has helped oxygen starvation the most is parasite cleansing with enemas, but I only get short term relief.

I've gone through aggressive parasite cleaning, still have tons but also have passed tons. I tried buhner herbs and felt nothing at all, no die-off reactions.
Posted 7/28/2019 1:16 PM (GMT 0)
lrt,

Hello and welcome. I’m sorry you have suffered for so long. It’s definitely worth it to look into Lyme and related infections.

Have you seen a Functional MD and had an extensive battery of testing?

I came to find out I had Lyme after seeing a Functional MD who suspected I had Chronic Inflammatory Response Syndrome (CIRS) from mold exposure. She ran all the standard labs, CIRS labs, a Lyme Western blot, CD57, tests for other infections: chlamydia pneumonia, mycoplasma pneumonia, EBV, HHV-6, parvovirus-19, CMV, immunoglobulins and subclasses, full thyroid, cortisol saliva testing, etc.

The labs revealed broad immune dysfunction, immune suppression, chronic infections. I went on to have an Igenix Lyme test which still was interpreted as negative but had some important bands positive or indeterminate. I chose to then test with DNA Connexions, which was positive for Lyme and ehrlichia.

Testing for Lyme (borrelia) and the common tick infections like bartonella, babesia, ehrlichia, anaplasma, etc is difficult. There are many false negatives, as these infections evade the immune system which means the immune system may not form antibodies. There are also multiple strains and some strains may not respond to the tests.

You mentioned mercury and parasites and that you treated parasites but still have them. Did you do any kind if mercury chelation? Do you have any amalgam fillings in your teeth? Have you had a cone beam or cavitat scan to check for cavitations in the jawbone?
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Edited to correct false positives, which should have been false negatives.

Post Edited (WalkingbyFaith) : 7/29/2019 1:25:24 PM (GMT-6)

Posted 7/28/2019 1:46 PM (GMT 0)
I had only 4 amalgams, and all were removed many years ago. But I also had mercury from other sources because the poisoning was all over my organs. It did help to get them removed.

Saw one functional med doctor many years ago, but never followed through with him. I think that was the right decision based on my history, probably he would have made me worse or drained my bank account. I started Cutler a long time ago but had to stop because I could not handle even small doses of chelators. I'm ready to try again now though, but just with dmps. I dumped a lot of metals just through sweating and diet, but progress was extremely slow. A few years ago I recovered full brain function after a ridiculous long time, but I was already heading in the right direction so I knew it was going to happen.

Parasites seems like an endless battle. Whenever I do enemas they pop out. I had symptoms of them long before cfs.

I really don't want to do lyme testing because it seems like a maze with false positives, false negatives, tons of money and time to find a decent doctor. And most likely I won't even trust whatever doctor I find. But that said I gotta keep marching on in some way or another.

No cone beam, never even heard of it. But I had a full dental scan last year before a wisdom tooth was removed. Speaking of that, my bones including teeth are like incredibly strong, abnormally strong. At the same time I feel like I also have some sort of osteoporosis, it sounds weird. The dentist said it took 3x longer to drill through my wisdom tooth than it should have because my tooth was so dense.

The last testing I had done was years ago, thyroid and adrenals were very low, but I already knew that going in to the test. Also had endoscopy 2 years ago and they found H pylori, but I did not take the 4 meds. Maybe I should have, but I'm still a little hesitant about antibiotics since I think the minocin contributed to being sick. It was a long time ago so maybe I have to get past that.

One of the very first tests I had was ebv, and they found high titers but no active infection. EBV sometimes crosses my mind but not sure how to treat for it. I've done quite a bit over the years.

I feel like if I go to a lyme doctor who specializes in lyme they are going to find lyme because they want to find it, and my symptoms match so closely. And if I go to a non lyme literate doctor they won't find it because they don't know how to find it.
Posted 7/28/2019 1:48 PM (GMT 0)
what other sources of mercury were you exposed to?
Posted 7/29/2019 2:35 PM (GMT 0)
vaccine and thermometer
Posted 7/29/2019 2:45 PM (GMT 0)
WalkingbyFaith - you mentioned there are many false positives with testing - did you mean to say false negatives?
Posted 7/29/2019 6:30 PM (GMT 0)

lrt said...
vaccine and thermometer

oh crap, thermometer? That could be quite serious.

Yes, you could very well be mercury toxic. You need to get a Doctors Data hair test and then post results on the Andy Cutler facebook group and they will help you to analyze it.

or do what I am doing and join the Facebook group called

"Irminix / NBMI / Emeramide / OSR"

and post your test results there. OSR is a new mercury chelator that crosses the blood brain barrier and chelates mercury from nerve tissue. Its far and away the most effective mercury chelator available currently.
Posted 7/29/2019 6:56 PM (GMT 0)
parasites often carry borrelia and other bacteria. its good you have started there. mimosa pudica is all the rave but if you want to follow klinghardt protocol then many of the pharmaceutical means can be had at your local vet store or online. artminisin, rife and other therapys have been helpful . a fellow bee venom therapy person with cfs 45yr diagnosis now has energy and no arthritis 1 year in . the shortness of breath is likely iron and folate anemia from babesia and malabsorption. relief can be had in 3 months hd treatment as apicomplexians die a little easier than the arthritis bugs like bartonella and mycoplasma. welcome
Posted 7/29/2019 7:26 PM (GMT 0)

Girlie said...
WalkingbyFaith - you mentioned there are many false positives with testing - did you mean to say false negatives?

Ha!!! Yes, Girlie. Thank you!

Lrt,
I edited my post above. Lyme testing has a lot of false negatives not positives.
Posted 7/29/2019 7:33 PM (GMT 0)
lrt,

If you can find a Functional MD who is at least somewhat knowledgeable about Lyme and will test you for it, I think that’s where I would start. That or a really good naturopathic doctor who is experienced with parasites, mercury, etc.

Most LLMD’s are going to treat with lots of antibiotics, although there are LLND’s who may use herbs and supplements.

A cone beam scan will find cavitations that won’t show on xrays. Are you near St Loius? The doctor that helped magoo2 with dental and parasite issues is there.
Posted 7/30/2019 5:33 AM (GMT 0)
I will try OSR.

Bee venom sounds good but I probably won't try it yet. Already did hair tests and mercury confirmed, other metals too maybe. The only chelator I'm going to do now is dmps. Hair test is the 4 low pattern.

I re-tried ip6 just recently to see if iron chelation would do anything. I took a small dose of about 100mg and didn't feel good.

Is there something I can take to target babesia or borrelia to see if it causes a strong die-off? Like I mentioned in first post I took some buhner herbs and felt nothing at all, took them by the multi-dropperful and nothing.

Been through a lot of prescription parasite medications (veterinary supply sourced). Nothing seems to work as well as enemas.
Posted 8/16/2019 6:05 PM (GMT 0)
Been reading older posts here trying to generate ideas.

I was able to find cistus tea here locally, and it's super cheap. First dose I felt nothing. Then I decided to increase strength and thought maybe I felt something positive, or it could have been imaginary.

I went back to it today and brewed it very strong at about 3 heaping tbls per cup and now I have the feeling it's doing something good in my gut. It's lucky because almost nothing affects my gut well and I've been trying to target it over everything else. My sense is to brew it even stronger to see what happens. I got an enhanced sense of calm in both gut and nervous system. No herx at all.

Other ideas I got on the forum were antimalarials and I see there is an otc Mepron I can order.

For quite a while I've had the idea that microscopic parasites or protozoans might be causing worse symptoms than the larger helminths that have been coming out.
Posted 8/16/2019 6:47 PM (GMT 0)
Taking Mepron to see if you react to it may be telling - re: Babesia

OTC Mepron? Are you in the US?
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