Goodby All. Thanks for the Help. No longer treating Lyme

Mark - I partially disagree on the usefulness of LLMDs.

I think they can be incredibly useful, and some of the brightest, most analytical, and most up to date medical professionals I've ever met.

That said, I think there are plenty of LLMDs that are less experienced that cost more than they are worth, and some that really look like they are in it for the money but I can't be totally sure. My first LLMD I think had no real clue about what she was doing. My second LLMD has totally turned my life around.

I've realized the importance of asking how long they have been treating Lyme patients, and their philosophy on how to beat this. My first LLMD thought antibiotics were totally useless in late stage Lyme, but was totally wrong. Bicillin for only about 6 weeks, 1-2 injections per week was huge for me. But that LLMD has helped repair all sorts of other damage that Lyme&Co&other issues caused.

I do agree about heavy metals being important though and am interesting in learning more about the protocol you referenced. For me I was tested for heavy metals early on and had no positives. But about 1.5 years in I ended up getting 30x the cutoff for Lead. I feel like Lyme and Heavy Metals in some cases is like the question of what came first, the chicken or the egg. I think for some people Lyme may hurt your detox pathways and make you store more Heavy Metals. For other people Heavy Metals may have messed up your immune system so badly that you can't beat Lyme. For both sets of people removing heavy metals is critical.

My LLMD had me do EDTA suppositories to treat the lead poisoning. But I had a very hard time taking them, as it greatly interrupted my sleep. It ended up making me feel super gassy but if I tried to release the gas the EDTA would come out. I have no proof, but I also think it prevented absorbtion of my night time meds (melatonin, small doses of clonazapen, trazodone) which I can't sleep without. And the lack of sleep was making me sicker so I asked for a different approach. I tried a 1 gram EDTA IV. I felt a big reduction in brainfog and felt more "alive" after it, and progressively felt better. Then 2 days later I got a fever. I haven't had one since Lyme started. It was the craziest progression of symptoms, nausea, hot, air hunger, then took alka seltzer gold and instantly felt freezing with teeth chattering, then fever, then migraine that lasted about 48 hours and then bad headache lasting about 1 week. And during this my rib cage started hurting really badly on my right side. My wife and I deduced that my liver swelled up and was putting pressure on my rib cage. I was scared that my liver was going to give out. But I also strangely wanted to continue treatment because I felt it was actually helping. Maybe fever was a good sign that my body is actually mounting a defense. Brain became clearer. But I didn't want to destroy my liver. Had a liver test 2 weeks after. Liver is functioning perfectly. So I'm planning on doing the EDTA IV again tommorow. I feel like this whole reaction may deserve a separate post too as I'm curious whether anyone else noticed something similar. But I'm also curious about the protocol you used and whether it is effective for lead as well.

lymelearner said...



My LLMD had me do EDTA suppositories to treat the lead poisoning. But I had a very hard time taking them, as it greatly interrupted my sleep. It ended up making me feel super gassy but if I tried to release the gas the EDTA would come out. I have no proof, but I also think it prevented absorbtion of my night time meds (melatonin, small doses of clonazapen, trazodone) which I can't sleep without. And the lack of sleep was making me sicker so I asked for a different approach. I tried a 1 gram EDTA IV. I felt a big reduction in brainfog and felt more "alive" after it, and progressively felt better. Then 2 days later I got a fever. I haven't had one since Lyme started. It was the craziest progression of symptoms, nausea, hot, air hunger, then took alka seltzer gold and instantly felt freezing with teeth chattering, then fever, then migraine that lasted about 48 hours and then bad headache lasting about 1 week. And during this my rib cage started hurting really badly on my right side. My wife and I deduced that my liver swelled up and was putting pressure on my rib cage. I was scared that my liver was going to give out. But I also strangely wanted to continue treatment because I felt it was actually helping. Maybe fever was a good sign that my body is actually mounting a defense. Brain became clearer. But I didn't want to destroy my liver. Had a liver test 2 weeks after. Liver is functioning perfectly. So I'm planning on doing the EDTA IV again tommorow. I feel like this whole reaction may deserve a separate post too as I'm curious whether anyone else noticed something similar. But I'm also curious about the protocol you used and whether it is effective for lead as well.

Question: Did you actually test for lead? Doing IV's for heavy metal is a TERRIBLE idea. Heavy metals need to be chelated out slowly using oral supplementation. Also research shows taking EDTA then couple hours later taking DMSA really speeds up the lead excretion.


https://www.ncbi.nlm.nih.gov/pmc/articles/pmc1128144/

HOWEVER! If you are mercury toxic then this is a whole other ball game as EDTA also chelates mercury but its certainly not the best option for that

You need testing to figure this out.

Mark FW:

I've been stalking this thread, but wasn't planning on commenting. However, after reading your most recent comments (and, those of astroman, Charlie, Lapis, and others), I wanted to say thanks for the thread.

I understood your original intent, I believe, and we share some of the same concerns. Personally, I think posts like this are helpful, so people don't get caught in an echo chamber.

Anyway, I'm happy for your improvement and wish you much success on your path forward!

The Dude

Great comments, Charlie.

The Dude Abides said...
Great comments, Charlie.

https://youtu.be/eskoxi12jbi?t=46


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Post Edited (Charlie55) : 11/12/2018 11:18:31 PM (GMT-7)

This forum used to have more traffic and more variety of in depth lyme "related" health.

Lyme isnt all about bugs, its about what was (still is) wrong with your body before the bugs got out of control. Proof > all the people positive for lyme with ZERO symptoms.

The so common automatic reponse of "you need to treat more (kill more)" should be followed with "look further under other rocks".

One of the LLMDs I went to always preached your body is a reflection of your genes and your gut health / flora, those are the building blocks, and the outcome is how those repond to all parts/areas/exposure of your living environment

One can keep driving thru the new construction zone, then fixing flat tires, or take another road. The less informed will blame the tire brand while taking the same road.

Post Edited (astroman) : 11/13/2018 10:32:45 AM (GMT-7)

lymelearner said...
Mark - I partially disagree on the usefulness of LLMDs.
.

Hello there was a lot said by me and a lot of really good responses. Admittedly much of what I said were statements that were too broad. There were many good counterpoints. Which the above is a good example. I wish I could answer the all but I just don't have the brainpower. Rawls does a very good job at explaining this and I totally agree. Mass cell meds have helped me cope with symptoms and are proving to assist in HM detox. Also a scrip for Dr K' parasite protocol and the reaction that led me to the HM conclusion and untimely ACC and mercury toxicity.

So it's a journey.

Also I was influenced by Bryan Rosner's book on using abx in much shorter cycles. He regretted was not changing strategies soon enough. If a treatment stops working change it up is his recommendation. I mentioned stockpiles of abx and also the full Parasite protocol I may break out to mop things up after ACC.

As to my first post. I realize off round (3 day break) from chelation, I become "manic". By Monday AM the redistribution symtom are subsiding and by 11AM im back on DMPS. So tor 4 days, "on round" I'm almost 100% symptom free. Including brain fog and dis-realization. Plus sometimes I get glimpses of my former self way before Lyme. Which makes me realize, for me, my condition is much deeper than just Lyme. I've been sick a long time without knowing it. This is normal with ACC treatment and it's these special periods most say they get more and more often.. Takes 1-2 years to get it all out of you brain, but you can manage and be very functional.

The reason I digressed is I realize "off round" my filters are shut off. I'm wondering today why I ever posted.. I think it's due to the rage I have for the medical community. That and I got really ticked off with the Dr K Unofficial FB site which to me is a product peddling site.

So yes I'm postponing(hopefully stopped) treating Lyme and I really do thank you all for the support.

I've said enough and had no intention of offending anyone. No one likes to be told their hopes or strategy is wrong or futile. Bottom line is I don't know. I have a theory and I'm going to pursue it. (Even thought while in a manic state I feel like I understand the origins of the universe

So let say I'm taking a break and leave it at that for now which is what I should have said in the first place. And much less.

Mark

Andy Cutler's protocol is far from "safe". I was a member of his groups (should I say "cult") from the beginning. Many people who followed AC protocol have gotten very sick! So, be careful.

You cannot diagnose "mercury poisoning" by finding only VERY LOW levels of mercury and minerals in your hair test. A sound person would treat for poisoning ONLY if there was a substantial increase in blood/urine levels, after a challenge test.

There may be some truth in "Lyme cases are due to mercury". In some mouse studies, an exposure to inorganic mercury (subtoxic doses) prior to Borrelia infection contributed to Lyme chronicity via delayed Th1 response (Th1/Th2 alteration).

But the underlying pathology is an infection, not poisoning.

Post Edited (Stevan) : 11/16/2018 12:46:01 AM (GMT-7)

Stevan said...
Andy Cutler's protocol is far from "safe". I was a member of his groups (should I say "cult") from the beginning. Many people who followed AC protocol have gotten very sick! So, be careful.

You cannot diagnose "mercury poisoning" by finding only VERY LOW levels of mercury and minerals in your hair test. A sound person would treat for poisoning ONLY if there was a substantial increase in blood/urine levels, after a challenge test.

There may be some truth in "Lyme cases are due to mercury". In some mouse studies, an exposure to inorganic mercury (subtoxic doses) prior to Borrelia infection contributed to Lyme chronicity via delayed Th1 response (Th1/Th2 alteration).

But the underlying pathology is an infection, not poisoning.

I came across that study when I was looking up lyme and mercury. Very interesting. But couldn't that mean if you properly take care of mercury then treating lyme should be easier (if mouse study translates to humans, always an if)? I wonder what % subset of lyme patients have an underlying mercury issue as well... mercury could potentiate lyme... It'd be interesting to know what % of general population has lyme exposure, what % has mercury exposure, and what % has significant exposure to both and then compare quality of life across groups.

Mark- I've heard infrared sauna is a safe and effective mercury remover. Have you heard about that? Its crazy because a few years back when I was still trying to figure out was wrong with me, I was taking supplements and when I took selenium I would get these one second glimpses of being my old self. Selenium is a known mercury antagonist.

Mark and others who believe mercury is causing them to feel bad. What kind of symptoms come from too much mercury? Thx.

Thanks for posting sounds like symptoms of most of the tick borne infections as well. I guess its worth a try if you've hit a wall with options on what to consider trying next. Many of us are there and obviously open to experimentation to get our health back.

SoMuchFun said...
............... Unfortunately, you also can't go by the heavy metal hair test 100% to determine your metal levels. ...... ...............Poor detoxers, like myself, may show low levels on the hair test but actually have large quantities in their system.

Bassed on the above, how did you know for sure that you had large quantities in your system?

I suppose one could assume this after trying and feeling better with this protocal, but it sounds like you knew for sure.

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So many issues with similar symptoms list. The list a few comments above are also very similar to hypothyroid and even possibly food sensitivities that go beyond wrecking the gut.