Who has ruled out Lyme disease and heavy metal toxicity?

[Swim15]

Posted about this recently but wanted to ask a different way. The more Ive learned and the more CFS patients Ive met the more people Ive seen diagnosed with these two along with mold - by far more than anything else mentioned on this forum.

In hindsight I find it weird that these aren’t talked about more and aren’t on the very top of the testing list seeing as they are much, much more common than many of the other things people here are looking for or the things on the roadmap.

Had I started with them sooner I would have saved a year or two of work ups. Luckily I found a knowledgeable doc and had all 3 nailed within a brief period of seeing her.

Curious as to who here has ruled them out? After following more docs, meeting patients, seeing disease pathology, etc I’d be a large percentage of people on here would nail down their diagnosis between these two and mold. Once they are taken care of any viral components usually go into remission

 

[christiankatz]

I haven't ruled out either, as I was diagnosed with Lyme disease 20-plus years ago, and I have amalgam dental fillings. I'd like to get tested for Lyme again, but it would be a long trip to the doctor, and a long day. If I had even a small remission from all this, I'd do it.

 

[Swim15]

I haven't ruled out either, as I was diagnosed with Lyme disease 20-plus years ago, and I have amalgam dental fillings. I'd like to get tested for Lyme again, but it would be a long trip to the doctor, and a long day. If I had even a small remission from all this, I'd do it.

Not sure what your history looks like but I’d bet you’ve got your CFS diagnosis right there between those two. Mercury wrecks the immune system and Lyme does the same. Have you treated Lyme?

 

[Shanti1]

I've had IGENEX lyme testing and heavy metal testing, both negative. I have no amalgams and have never eaten lots of high on the food chain fish. No known heavy metal exposure.

I think most people would show up with something on a urinary heavy metal challenge test though, we live in a toxic world. For each person, it is a question if the heavy metal burden is the cause or just another straw on the camel's back. I know people who have gone through whole chelation protocols with improvement and others who had no benefit.

Dr Kharrazian tests people for antibodies against the heavy metals and says those with antibodies are the people who tend to be the sickest. I don't know if he is right, but I found that comment interesting from an experienced clinician.

Obviously, at somepoint, a very high level of any metal will poison the mitochondria. Also, different people will have different susceptibilities, so some with lower levels could be sicker than someone with higher.

 

[Swim15]

@shanti Yeah its definitely a case of burden because you're right that everyone will show some degree of exposure. Those with low level exposure probably don't need to worry about it unless they're showing other signs of deranged immune function.

I'll throw my labs up for reference (first ones are pre and post test with EDTA and then pre/post with DMPS) - no known heavy mercury exposure but on par with others that I've seen with amalgam filling

 

[Swim15]

Unfortunately those didn't upload correctly - the first and last are the post/pre test with DMPS and the middle two are EDTA. Dates show correct order with first two on 9/27 and the second two on 10/11

 

[Shanti1]

It's great that you have been able to bring your mercury down. Do you feel better for it?

 

[5vforest]

@Swim15 glad to see you back, I hope that the treatment works for you. (Please update us too!) There are definitely some people who have success with these diagnoses and treatments.

I'll try to give my perspective on your question without getting too much into the debate on the science.

You ask about 3 things: Lyme, mold, heavy metal toxicity.

I think that many patients have investigated these concepts, while many have not.

I am fairly certain that in the UK for example, if you present with symptoms of ME/CFS you will be lucky to even get any testing beyond basic bloodwork. From what I read, it is hard to even procure these tests privately when you are in certain countries.

Here in the US, I can confirm that a well-regarded ME specialist that I have seen does indeed test for these conditions.

Unfortunately the picture is not very clear on how to accurately diagnose and treat them, and what to make of a patient who receives the diagnosis, does the treatment, and yet is still symptomatic.

Lyme Disease

Lyme testing is terribly inaccurate. There are speciality labs that claim to have better tests, but they typically have not published validation studies, and so not everyone trusts them. Once you do "accept" a diagnosis of late-stage Lyme Disease, nobody has any clue how to treat it. Yes, the ILADS physicians will tell you that they have many "protocols", but in my experience, many (most?) patients either don't get better at all, or end up with lingering symptoms of some sort. Yes, some patients do achieve "remission" but it is telling that nobody in the Lyme world uses the word "cure".

Ok, so some patients are still sick. Do they have "chronic Lyme Disease", or do they have "Post Treatment Lyme Disease Syndrome"? There is a lot of good evidence of persistent Borrelial infections, but there is no way to tell if the presence of these bacteria is really what's causing someone's symptoms. There is ongoing research into this but it's moving very slowly.

Mold toxicity

Again, another can of worms. Not only is there no good method for diagnosing mold toxicity, even amongst the "believers" there are multiple schools of thought.

There is the Shoemaker approach, which diagnoses via various blood markers, the VCS test, and one's symptoms. Then you follow a 12 step treatment plan, the big one being Cholestyramine to bind the mold toxins so that they can be excreted.

There is the gentler approach from e.g. Neil Nathan that uses different binders, and typically uses urine mycotoxins tests to diagnose patients. These tests are probably not very accurate at best, and total junk at worst. You can find critical analysis from QuackWatch and associated sites if you search Google.

There is also the Erik Johnson / Lisa Petrison approach, which is basically "throw away all your belongings and move to the desert, and see if you get better". I have not tried this approach.

Heavy Metals

Less familiar with this one. I have a couple of amalgam fillings but didn't test high on mercury from the same Doctor's Data test. I feel like I have heard people mention that the hair analysis is "worthless", I have no idea how to qualify those statements though. I do see people posting about this occasionally, but you're right, not very frequently.

p.s. You might want to redact your name / DOB from those test results

 

[Swim15]

It's great that you have been able to bring your mercury down. Do you feel better for it?

I haven’t. That was pre/post test

 

[Swim15]

@5vforest Thanks for your points and I thought I had uploaded the cropped photos - thanks for catching that!

A lot of good points - I'll try and tackle some of those tomorrow with my thoughts as I am dead and about out for the night.

 

[Shanti1]

I haven’t. That was pre/post test

I see that now, thank you.

 

[christiankatz]

Not sure what your history looks like but I’d bet you’ve got your CFS diagnosis right there between those two. Mercury wrecks the immune system and Lyme does the same. Have you treated Lyme?

When I was diagnosed with Lyme, it was in a city where the doctors hadn't seen a case before, so I'm not sure if the treatment was adequate. I can't remember the treatment, but it was either a shot or a round of antibiotics. I was super healthy for years after the Lyme diagnosis, so if it's a problem now, It would have gone from dormant to active in the last decade or so. I wonder, of course.

 

[5vforest]

When I was diagnosed with Lyme, it was in a city where the doctors hadn't seen a case before, so I'm not sure if the treatment was adequate. I can't remember the treatment, but it was either a shot or a round of antibiotics. I was super healthy for years after the Lyme diagnosis, so if it's a problem now, It would have gone from dormant to active in the last decade or so. I wonder, of course.

That could definitely happen, well within the realm of possibilities.

 

[Darla]

I've had Lyme testing and heavy metal testing via hair sample, both negative. I wouldn't be surprised if I had some sort of problem with black mold, but it's unclear to me how to test for or treat that.

 

[caledonia]

Mercury is difficult to test for. Everyone will probably show something with a provoked urine test. A blood test will only show a current exposure. A hair test may not show mercury in the toxic metals section, unless your exposure is from fish. So you don't think you have mercury, but you may actually be loaded with it.

If you get the correct Doctors Data hair test (with both toxic metals and essential elements) and it's interpreted with Cutler's counting rules, looking for deranged mineral transport, it may show up positive for mercury.

Cutler says something like the Lyme tests may give false positives. If you test for mercury and that's positive, and chelate out the mercury, what you thought were Lyme symptoms may resolve.

Cutler thinks that mercury can cause mold sensitivity. You may need to eliminate mold exposure in order to chelate.

So it could be that mercury is at the bottom of the three diagnoses that you mention, and are common on here.

 

[Wishful]

Ive met the more people Ive seen diagnosed with these two along with mold

Be aware that a lot of heavy metal diagnoses may be invalid. There are businesses that make their profits by showing graphs that show elevated levels, and selling treatments for those, but a proper medical analysis might show just normal levels of metals. Provocative testing is controversial, since elevated levels from those are not proven to correlate to actual health issues. I'm not sure of the accuracy of hair testing either.

Some people do have health problems from heavy metals, but if you do for-profit testing of metals and get frightening results, get a second evaluation from a proper toxicologist.

BTW, I have plenty of amalgam fillings, and am not worried about mercury from them. I did have proper testing from a toxicologist, who found no significant elevations of toxins, except for slightly elevated selenium which he said was normal given my high whole-grains diet at the time. Note that there was no sign of elevated mercury despite the fillings or the several mercury spills I had in my various homes (those old mercury thermometers).

 

[vision blue]

IMO, Mold and heavy metals get talked about alot only because they are low hanging fruit in the world of alternative testing

 

[christiankatz]

BTW, I have plenty of amalgam fillings, and am not worried about mercury from them. I did have proper testing from a toxicologist, who found no significant elevations of toxins

Thank you for saying this. It's a relief to me, as I don't want unnecessary worrying. A friend had amalgam fillings removed and didn't notice a positive difference in health. It's not something I want to do. It would be too stressful and expensive.

 

[Wishful]

A friend had amalgam fillings removed and didn't notice a positive difference in health.

There have been other members here who have had fillings removed and greatly regretted it, since their symptoms increased. From what I understand, the action of removing fillings releases way more mercury into the mouth than leaving them in place does. Add in the stress of going to appointments, and possible financial stress. Removing amalgam fillings is by no means a guarantee of improved health.

 

[Swim15]

@5vforest Sorry guys, just now getting to this stuff so sorry for all the consecutive posts.

Here's to answer some of your points -

Lyme
As far as lyme goes, your're right it is hard to test for but not as hard as a lot of latent viral infections people here tend to chase. IgeneX and galaxy have arguably the most accurate tests in the world - I also feel that Vibrant wellness has a very accurate test.

I know about half a dozen people personally that have been diagnosed, treated, and are now fully recovered from chronic lyme - my physician being one of them. The cases I have seen myself are obviously not exhaustive but generally there are multiple other issues going on causing a weakened immune system. Once those are addressed people do get better. I wouldn't say there is a post treatment lyme syndrome but that's just my opinion - to me its always an active infection if there are labs and clinical symptoms that match. Lyme is part clinical and part lab so its important to get both parts adequately diagnosed.

I'd akin lyme to a viral infection. I cannot definitively say this but after reading a lot, seeing and talking to patients, looking over literature from the most well known lyme docs I would venture to say that because it, and coinfections, are stealth pathogens they act like viral infections and persist in latent forms in almost all people exposed to the organism. Fluid cultures from autopsies and past patients seem to corroborate this.

The key takeaway here though is that, in most chronic patients, lyme is a case of immune system dysfunction just like with many viral cases. If you correct the immune dysfunction (often resulting from lyme, heavy metals, severe gut dysbiosis, or other toxin exposure, etc) then your immune system is able to suppress the infection like most people.


Mold
Similar to lyme, it needs to be a diagnosis based on clinical symptoms and lab tests. For example my urine mycotoxins were elevated (the degree of elevation obviously is part of the diagnosis - small elevations seen in a general population vs significant elevations are one criteria for diagnosis). Since moving, my levels are normal. I've only seen significant elevations in people who had symptoms that lined up with mold exposure/toxicity.


Heavy Metals
I obviously haven't seen your labs or your test but if you have fillings then not having elevated levels of mercury would be impossible on a challenge. Actually challenges are VERY contraindicated with a DPMS challenge so I'd be scared if a doctor ordered one for you without having fillings removed. There are a lot of people in the group I am in that were permanently disabled from having a challenge done with fillings still in.

Hair test won't show heavy metal toxicity but there is a way to read them that shows the extent of toxicity if you are positive on a challenge test. There is a group I am apart of that details how to read them and I can pull over that info if you like and post it here.

Short of being a phenomenal genetic outlier with beefed up detox pathways (and even then thats a stretch), everyone with amalgam fillings is mercury toxic. There is no way to have half a gram of mercury in your mouth leaching out into your body and NOT be toxic. That said, is everyone with fillings sick or exhibiting symptoms? No. If you have symptoms and have fillings though then I would absolutely have them removed without question. These patients, however, as you brought up will not get better until they have removed them and chelated the mercury from their bodies. Just removal is not enough after they have been leaching for years.

To your point, most people in the general population will show elevated levels with a challenge but the degree of elevation (as with every toxicity test - low values aren't much to worry about, high values are) is what the diagnosis is based on. When you start to get to 15x+ reference range then you know there's an issue.



One other issue I've learned about extensively is the damage that gadolinium contrast dye can cause. This, like fluoroquinolones is incredibly toxic and remains in the body long after the test causing significant damage in a subset of people.