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Detoxing chems/molds with integrative doc vs. seeing Dr. Chheda

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Location
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Hi all,

After giving up on CFS research and treatment for 10 years (I am 54 and have had it since my teen years), I am back to seeing if I can get anywhere with it. I was planning on seeing Dr. Chheda but heard of an integrative medicine doctor who treats ME/CFS and so decided to try him first to save money. Now I am having 2nd thoughts and wondering whether I should see Chheda. (I am separated and won't be able to afford out-of-network CFS treatment (which means anyone who's good) after my divorce, although it's going to be a slow process.) I'm looking for thoughts on this.

My doctor knows about Naviaux's Cell Danger Response and sees chronic illness as being due to toxins (including toxic life events) and free radicals that result in a threat response and hypervigilance which affects the senses and the immune system, including mast cell activation. He addresses it with diet (very strict, keto-paleo), nervous system (alpha-stim CES devise or similar, breathing, EFT, etc), supplements that promote energy production and detox, hydrogen water, electrolyte solution ("People with CFS don't seem to be able to keep their salts up."). Possible future treatments that he's mentioned so far might include full-spectrum sauna with oxygen, IV of colloidal silver, and ozone autohemotherapy. The diet seemed to help but I can't seem to keep it up while dealing with my special needs kids as a single parent. The electrolyte solution helps me sleep better bc I don't wake up multiple times to drink.

He had me take Great Plains urine tests for toxic chemicals and mold and the result showed high values for 7 toxic chemicals and 2 molds. He thinks that would be enough to explain my symptoms but I am a bit skeptical and think it's more likely that detoxing will be "necessary but not sufficient" to bring about significant symptom relief. (I mean, has anyone found detoxing to be the solution? I feel like I would have heard about that.) In addition to basic detox supplements like NAC and vit C, the detox regimen would be using a supplement called G.I. Detox (zeolite clay, activated charcoal, etc) as well as calcium-d-glutarate.

Now that I am seeing that my insurance will pay 70%, I am wondering about seeing Chheda (although I suspect they won't pay 70% of her much higher rate) since she looks into so many issues that could be at play, with extensive testing and many treatment options. (I know from tests years ago that I have EBV, CMV-7, reverse T3 thyroid issues, and anticardiolipin antibodies.)

I fear that if I just stay with my current doctor's regimen I will be struggling to keep the diet going and will feel crappy while I detox, leading to a vicious cycle of feeling crappy/exhausted which makes it even less likely that I can manage a separate diet from the family. Struggling that way for months to try to detox and with what outcome? Whereas I am hoping with Chheda I could get some more immediate relief, and maybe discovery of issues I didn't know I had that can be treated.

Thoughts?

Thanks,
Nina
 

Wishful

Senior Member
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To me it sounds like your integrative medicine doctor is throwing everything that sounds good at the disease, without knowing what ME actually is. Of course, every doctor, including Dr. Chheda, doesn't know what ME actually is, so no one knows what treatments will actually help someone with ME. My guess is that a doctor that has the patients try a large number of different treatments is more likely to claim some successes than a doctor that only offers one treatment, but the same applies to self-prescribed treatments. I don't know whether any doctor offers any higher chance of success than self-directed experimentation.

Hmmm, it's possible that a doctor who sees a lot of PWME will be better at guessing which treatments are more likely to work for a patient based on the specific set of symptoms, based on experience rather than theory, since there still are no proven theories. Then too, some doctors might be more effective at getting a placebo response, by having better sales technique for convincing the patient that it will work.

Whether it's worthwhile to see Dr. Chheda (or any other ME specialist) depends on your belief in how effective they are likely to be. I'd see one if it was free and convenient (didn't have to drive far), but my belief that they'd be able to correctly guess at a treatment that would work for me is pretty much nonexistent.

Did you ever find anything that helped you before? Did you try a wide variety of supplements, diet changes, herbal remedies, and other such potential treatments? Did your ME symptoms ever decrease for a while even though you couldn't figure out why? If you haven't exhausted the possibilities of self-experimentation, there's still hope for something there.

I still think that I'm at least as likely to find a new treatment by accident in a grocery store (maybe a foreign one) than from something prescribed by a doctor, at a lot less expense and inconvenience.


If you do go to a doctor to try to find a treatment, please do report back here, whether the result is positive or negative. That might help someone else facing the same question. If someone hasn't already done a poll here for "Was an ME specialist worth seeing?" (or something along those lines), that might be an interesting poll to start.
 

ljimbo423

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I fear that if I just stay with my current doctor's regimen I will be struggling to keep the diet going and will feel crappy while I detox, leading to a vicious cycle of feeling crappy/exhausted which makes it even less likely that I can manage a separate diet from the family. Struggling that way for months to try to detox and with what outcome? Whereas I am hoping with Chheda I could get some more immediate relief, and maybe discovery of issues I didn't know I had that can be treated.
I've had ME/CFS for 42 years, since I was 18. So I know what long term illness feels like.

Based on my own experience, I've had to, the was no way around it, deal with detox symptoms to improve my health. I was severe for several years and have slowly moved myself to mostly mild symptoms, occasionally dipping into mildly moderate.

I think you will need to deal with these detox symptoms to some extent. Maybe you can talk to which ever doctor you choose and ask that you do the treatment at your own pace.

They shouldn't push you into trying to improve your health faster than you can comfortably handle. If they do, I'd say they are not the right doctor for you.

I do agree with you though, that toxins alone are not commonly the only cause of ME/CFS. And detoxing alone will not likely bring you recovery.

I've learned that severe dysbiosis and a probable leaky gut are causing my ME/CFS and have made great progress treating them. Detoxing alone would not have gotten me from severe to mostly mild ME/CFS.

I hope this is helpful.:)
 

wabi-sabi

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He addresses it with diet (very strict, keto-paleo), nervous system (alpha-stim CES devise or similar, breathing, EFT, etc), supplements that promote energy production and detox, hydrogen water, electrolyte solution ("People with CFS don't seem to be able to keep their salts up."). Possible future treatments that he's mentioned so far might include full-spectrum sauna with oxygen, IV of colloidal silver, and ozone autohemotherapy.
I have to admit I am going through a pessamistic period, but it just doesn't sound to me like any of these treatments would be helpful aside from the electrolytes. Pushing salt and fluid helps with orthostatic issues, but you don't need to see a doc at great expense to drink salty water.

My current litmus test for trying to figure out if a treatment sounds plausible is to ask myself two things: 1) does this treatment have something to do with the known pathophysiology of the disease? or 2) would this treatment work on some other neuroimmune disease like MS? If the answer is no to both I save my money (or donate it to a scientist!).
 

wabi-sabi

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What is the known pathophysiology of ME? I don't recall hearing about anything that is known for sure about it.
I don't guess we're totally sure about everything yet- but there's so much good research coming out lately. I have been very excited about Dr. Prusty's work, for example. I'm sure you can also think of work that has been discredited or where the science has moved on.

For me to get invested in a treatment, either financially or emotionally, I need to see the link to current science.
 

Wishful

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For me to get invested in a treatment, either financially or emotionally, I need to see the link to current science.
Yes, that's the problem: that there isn't any scientific finding yet to base a treatment on. :(

I expect there will, over time, be some findings where: "If you have this specific profile of symptoms and development, and have these specific markers, then there's a 65% chance that this treatment will effectively reduce this specific secondary symptom, which will improve your quality of life, but you'll still have other ME symptoms."
 
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[I was trying to quote Wabi-sabi's answer above but don't know how to do that.]

Dr. Prusty's work is leadings me to want to consider trying antivirals. I wonder if Chheda would prescribe them.
 

ljimbo423

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[I was trying to quote Wabi-sabi's answer above but don't know how to do that.]
If you highlight the text you want to quote and release to mouse button. A little banner will pop up giving you the choice to either reply or quote.

If you click on the reply link, the text you highlighted will show up quoted in your reply box at the bottom of the page.
 
Messages
43
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9
Location
Austin, TX
I do agree with you though, that toxins alone are not commonly the only cause of ME/CFS. And detoxing alone will not likely bring you recovery.

I've learned that severe dysbiosis and a probable leaky gut are causing my ME/CFS and have made great progress treating them. Detoxing alone would not have gotten me from severe to mostly mild ME/CFS.

I hope this is helpful.:)
Thanks, Jim, this is helpful. I do think I need to detox (necessary but not sufficient) but want someone who is more expert than my current doctor to tell me when (relative to other treatments) that should be done.
 
Messages
43
Likes
9
Location
Austin, TX
To me it sounds like your integrative medicine doctor is throwing everything that sounds good at the disease, without knowing what ME actually is. Of course, every doctor, including Dr. Chheda, doesn't know what ME actually is, so no one knows what treatments will actually help someone with ME. My guess is that a doctor that has the patients try a large number of different treatments is more likely to claim some successes than a doctor that only offers one treatment, but the same applies to self-prescribed treatments. I don't know whether any doctor offers any higher chance of success than self-directed experimentation.
Thanks, Wishful. My integrative doc started as an ENT, and you're right, he does see all the chronic illnesses as one disease. I like that Chheda and Kaufman have backgrounds in infectious diseases given Prusty's research that viruses can reactivate and cause mito fragmentation.
 
Messages
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Thanks, Wishful. My integrative doc started as an ENT, and you're right, he does see all the chronic illnesses as one disease. I like that Chheda and Kaufman have backgrounds in infectious diseases given Prusty's research that viruses can reactivate and cause mito fragmentation.
The other thing is that Kaufman and Chheda have been able to identify and treat some of the comordbid/misdiagnosed issues, like Mast Cell Activation Syndrome, and if (some of?) what I have is treatable, I'd like to know and get it taken care of.
 
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Well, now I’m really discouraged seeing that Aetna won’t pay for most of the tests and treatments, including antivirals. It specifically says viruses have not been shown be the cause.

Although it was originally thought that CFS was related to a viral etiology, more recent studies have failed to find any predictable association between CFS and any particular virus.

http://www.aetna.com/cpb/medical/data/300_399/0369.html

I don’t suppose Prusty’s research would be considered plus it doesn’t lead one to a specific treatment.
 
Last edited:

Wishful

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Although it was originally thought that CFS was related to a viral etiology, more recent studies have failed to find any predictable association between CFS and any particular virus.
The 'predictable association' is the important part. Some people might have a strong reaction to some viral infection, which makes their ME worse, and they might benefit from antiviral treatment, but at present no none knows how to identify those people and the appropriate treatment for them. More research needed, and it would be hard to get funding if it only applies to a relatively small number of people.

That Aetna document is interesting, as a list of all the treatments and diagnostic techniques that have been examined. Of course, the question is how much bias is there for saving the insurance company money rather than maximizing the patient's chance of diagnosis and treatment? Still, it looks like a good starting point for seeing what's available, so that you can look for papers to verify their conclusions.
 
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Hi all,

After giving up on CFS research and treatment for 10 years (I am 54 and have had it since my teen years), I am back to seeing if I can get anywhere with it. I was planning on seeing Dr. Chheda but heard of an integrative medicine doctor who treats ME/CFS and so decided to try him first to save money. Now I am having 2nd thoughts and wondering whether I should see Chheda. (I am separated and won't be able to afford out-of-network CFS treatment (which means anyone who's good) after my divorce, although it's going to be a slow process.) I'm looking for thoughts on this.

My doctor knows about Naviaux's Cell Danger Response and sees chronic illness as being due to toxins (including toxic life events) and free radicals that result in a threat response and hypervigilance which affects the senses and the immune system, including mast cell activation. He addresses it with diet (very strict, keto-paleo), nervous system (alpha-stim CES devise or similar, breathing, EFT, etc), supplements that promote energy production and detox, hydrogen water, electrolyte solution ("People with CFS don't seem to be able to keep their salts up."). Possible future treatments that he's mentioned so far might include full-spectrum sauna with oxygen, IV of colloidal silver, and ozone autohemotherapy. The diet seemed to help but I can't seem to keep it up while dealing with my special needs kids as a single parent. The electrolyte solution helps me sleep better bc I don't wake up multiple times to drink.

He had me take Great Plains urine tests for toxic chemicals and mold and the result showed high values for 7 toxic chemicals and 2 molds. He thinks that would be enough to explain my symptoms but I am a bit skeptical and think it's more likely that detoxing will be "necessary but not sufficient" to bring about significant symptom relief. (I mean, has anyone found detoxing to be the solution? I feel like I would have heard about that.) In addition to basic detox supplements like NAC and vit C, the detox regimen would be using a supplement called G.I. Detox (zeolite clay, activated charcoal, etc) as well as calcium-d-glutarate.

Now that I am seeing that my insurance will pay 70%, I am wondering about seeing Chheda (although I suspect they won't pay 70% of her much higher rate) since she looks into so many issues that could be at play, with extensive testing and many treatment options. (I know from tests years ago that I have EBV, CMV-7, reverse T3 thyroid issues, and anticardiolipin antibodies.)

I fear that if I just stay with my current doctor's regimen I will be struggling to keep the diet going and will feel crappy while I detox, leading to a vicious cycle of feeling crappy/exhausted which makes it even less likely that I can manage a separate diet from the family. Struggling that way for months to try to detox and with what outcome? Whereas I am hoping with Chheda I could get some more immediate relief, and maybe discovery of issues I didn't know I had that can be treated.

Thoughts?

Thanks,
Nina

Hi Nina,

I have been sick for many years and am believed to have CIRS caused by mold illness and possibly lyme disease. Whilst I am not sure what you deal with, a lot of functional medicine doctors I have spoken to believe that CFS can actually be caused by mold, or that this is actually the actual issue. I have been sick for about 7 years and I did the urine test also which showed I have every mold group at high levels, and the treatment for mold illness is binders.

I do no not know your actual background, but as someone who has been sick for years I would certainly wonder if that could be a piece of the puzzle. At this point I am so miserable I am willing to try whatever to see what works. The functional medicine costs really suck, but I am working with one right now that seems really good at fixing the key issues, such as gut health, detox, and the root cause.

Have you ever lived in a home that had a leak or that you found mold in? All of this started with me after a miscarriage.

I also thought about seeing Chheda to rule out other things, but my friend told me she doesn't take insurance and is $1000 for the visit?