Posted 08 October 2016 - 05:07 AM
Posted 08 October 2016 - 05:31 AM
Sounds to me like heavy metal problems are a definite possibility, especially with the psychological symptoms and the fungal infections. If I had those symptoms, I'd get a metals hair test. Direct Labs has a good one.
I thought hair tests were kinda hokey? My doctor did say she believes copper is a problem, and coffee enemas (which I'm doing) are one of the best ways to eliminate copper.
Posted 08 October 2016 - 05:43 PM
Why not try a diffuse regimen of antibiotics?
Flagyl, Augmentin, Tetracycline, maybe cipro.
2 - 3 weeks of this should kill whatever the fuck is in the body, including pylori, cpn, etc. I'm considering it myself.
I'm waiting to see a gastro next week who has an interest in dysbiosis, and also seeing my doctor again at the end of the month .. so was gonna discuss antibiotics/antifungals then. The problem is I've read bacterial infections in the gut can just grow back unless you alter the flora permanently with something like FMT. Also, cpn takes years to treat.
Posted 08 October 2016 - 08:30 PM
I really hope you are discussing your case with a psychiatrist especially if you are continuing to have problems with your mood. Why do you think this is the result of an infectious disease? Prior to experiencing these symptoms, were you using any drugs or supplements? Were any of these imported from a foreign country? Have you discussed the use of these drugs with your doctors? I am not sure why you believe your time and money was wasted at the doctors you saw. How many physicians did you see? If they all agree, is it not possible they were correct? I would be cautious about trusting this woman from the "reputable clinic"
Posted 09 October 2016 - 02:09 AM
Why not try a diffuse regimen of antibiotics?
Flagyl, Augmentin, Tetracycline, maybe cipro.
2 - 3 weeks of this should kill whatever the fuck is in the body, including pylori, cpn, etc. I'm considering it myself.
I wouldn't touch cipro, caused terrible peripheral neuropathy for me and has a black box warning. As for the others it wouldn't hurt. Maybe change out the Tetracycline with Zithromax. All that is needed is strong probiotics.
Posted 09 October 2016 - 05:31 AM
I really hope you are discussing your case with a psychiatrist especially if you are continuing to have problems with your mood. Why do you think this is the result of an infectious disease? Prior to experiencing these symptoms, were you using any drugs or supplements? Were any of these imported from a foreign country? Have you discussed the use of these drugs with your doctors? I am not sure why you believe your time and money was wasted at the doctors you saw. How many physicians did you see? If they all agree, is it not possible they were correct? I would be cautious about trusting this woman from the "reputable clinic"
I barely can afford the supplements I need, so don't know why I'd be wasting $300 an appointment on a psychiatrist. I saw a psychiatrist: he told me that my physical symptoms (feelings of drunkenness when walking, tinnitus, headaches, low blood pressure) couldn't be linked to depression/anxiety. I also started a short course of ECT as an inpatient and thought it was going to kill me: after every session, I'd sit in my room violently shaking and vomiting, but the doctors were fine with that.
Psychiatric conditions do not cause persistent malabsorption, i.e. deteriorating Vit D levels despite supplementation, they don't cause anemia of chronic disease, they don't persistently raise monocytes (14 months), they don't cause ataxia and a near-inability to walk, and they don't cause violent herx/die-off reactions to seemingly benign supplements like Garlic or Apple Cider Vinegar.
I was using nootropics prior to this which no doubt contributed to my burn-out and development of CFS. But if I was still wasting my time seeing a psychiatrist, I'd most likely be dead by now.
Posted 09 October 2016 - 10:54 AM
I really hope you are discussing your case with a psychiatrist especially if you are continuing to have problems with your mood. Why do you think this is the result of an infectious disease? Prior to experiencing these symptoms, were you using any drugs or supplements? Were any of these imported from a foreign country? Have you discussed the use of these drugs with your doctors? I am not sure why you believe your time and money was wasted at the doctors you saw. How many physicians did you see? If they all agree, is it not possible they were correct? I would be cautious about trusting this woman from the "reputable clinic"
Almost everything we have is a result of an infectious disease. Our immune response dictates how our biological processes function. I don't want to deviate from the OP's topic, but he's spot on with his assessment.
If I had a dollar for every time a physician told me something that was completely incorrect, I'd have about $5. And if I had listened to them, I'd either be debilitated or dead by now.
Posted 09 October 2016 - 03:06 PM
Sounds to me like heavy metal problems are a definite possibility, especially with the psychological symptoms and the fungal infections. If I had those symptoms, I'd get a metals hair test. Direct Labs has a good one.
I thought hair tests were kinda hokey? My doctor did say she believes copper is a problem, and coffee enemas (which I'm doing) are one of the best ways to eliminate copper.
How is not having any data better than a guess from your doctor? The hair tests will show what metals your body is excreting. I think coffee enemas are a bit hokey. The science behind them is pretty weak: http://www.thepaleom...at-youve-heard/. Why do that when there are proven metal chelators that have been used for a long time like DMSA and Alpha-Lipoic Acid that can chelate a wide range of toxic metals? A lot of people use these via the Cutler Protocol to detoxify as gently as possible. Of course, there's no need for all this if metals aren't the problem, that's why there are hair tests and so forth.
Posted 10 October 2016 - 10:13 AM
Sounds to me like heavy metal problems are a definite possibility, especially with the psychological symptoms and the fungal infections. If I had those symptoms, I'd get a metals hair test. Direct Labs has a good one.
I thought hair tests were kinda hokey? My doctor did say she believes copper is a problem, and coffee enemas (which I'm doing) are one of the best ways to eliminate copper.
How is not having any data better than a guess from your doctor? The hair tests will show what metals your body is excreting. I think coffee enemas are a bit hokey. The science behind them is pretty weak: http://www.thepaleom...at-youve-heard/. Why do that when there are proven metal chelators that have been used for a long time like DMSA and Alpha-Lipoic Acid that can chelate a wide range of toxic metals? A lot of people use these via the Cutler Protocol to detoxify as gently as possible. Of course, there's no need for all this if metals aren't the problem, that's why there are hair tests and so forth.
Thank you for the article. I have been cautious on coffee enemas for a long time but I have seen too many people with positive results to discount them. I too have looked into the literature on coffee enemas and what is lacking in the literature is the effect they have on our microbiome. If I were to hypothesize on the beneficial effects of coffee enemas, I would surmise that they create a microbiome more conducive to better health. This could account for their benefit in some and no benefit in others.
Hair and urine tests for metals can be a bit tricky. No metals can be found yet the person is full of metals. The tests show the amount of metals being excreted and that is sometimes does not reflect that individuals total metal load. If the individual has poor detoxification pathways, they may not be able to excrete any metals on their own.
Posted 10 October 2016 - 11:11 AM
I have found the enemas benefical, but YMMV. They help my suicidal depression and have done more for my 'adrenal fatigue' than Hydrocortisone did. I'm not even close to feeling well, but they are they only thing that pulled me back from the complete brink.
Posted 14 October 2016 - 09:53 AM
I saw a gastroenterologist today with an interest in dysbiosis/FMT. He said my stool results weren't good, and offers a supplemental/nutritional program to eradicate the overgrowth and repair the gut. He breaks it down into four phases .. starting off with antibiotics (I can't recall which), then one phase to treat dysbiosis, one phase to replenish the microbiome (specialized probiotics), one phase for "visceral hypersensitivity", and a final phase for leaky gut. It's pretty expensive -- about $900 total -- but he's using a lot of practitioner supplements. The alternative is FMT. He claimed either would most likely eradicate the overgrowths of Strep and Prevotella, but couldn't say how much it would do for my CFS symptoms, unfortunately.
I'm desperate, but not sure if it's worth it. I don't think he's a scam artist or anything -- he trained at the Centre for Digestive Diseases in Sydney. Alternative is to wait and see the CFS doctor who ordered the test, since I think they offer something similar (eradicate, then repopulate) without me probably having to commit to $900 worth of supplements.
I just wish I knew how sick the Strep was actually making me, and whether there might be an end in sight to all of this.
Posted 25 October 2016 - 08:52 AM
Not much to add. I'm still waiting to see my CFS doctor again in 5 days. In the meantime, I've been experimenting with a high-quality brand of Yaeyama Chlorella. This stuff is intense: since consuming it, my fatigue has been severe, and I've also broken out into strange rashes in parts of my body -- pink round patches e.g. on the back of my leg, pink red dots on my arms, and little blood-colored dots that resemble insect bites in other areas. I also have visible skin peeling (that looks fungal) on my face, hands, arms, and a lot of dandruff in my hair when I wake up.
There's a connection between heavy metals and fungal infections, and Chlorella is known to chelate HM's. I'll discuss it with my doctor.
Mood instability and anxiety is still a huge problem, but unfortunately there's nothing I can really do about that.
Posted 25 October 2016 - 03:44 PM
Mood instability and anxiety is still a huge problem, but unfortunately there's nothing I can really do about that.
If you mean emotional lability, which is one of the known symptoms of CFS, there are some treatments: the tricyclic antidepressant amitriptyline is one treatment; also, dextromethorphan (which is used a cough mixture and can be bought OTC) can also help.
See the Wikipedia article on emotional lability (aka: pseudobulbar affect).
Edited by Hip, 25 October 2016 - 03:44 PM.
Posted 25 October 2016 - 03:48 PM
Mood instability and anxiety is still a huge problem, but unfortunately there's nothing I can really do about that.
If you mean emotional lability, which is one of the known symptoms of CFS, there are some treatments: the tricyclic antidepressant amitriptyline is one treatment; also, dextromethorphan (which is used a cough mixture and can be bought OTC) can also help.
See the Wikipedia article on emotional lability (aka: pseudobulbar affect).
Unfortunately, my 'adrenal fatigue' (I know that isn't a real dx.) -- but HPA-axis dysfunction or whatever you want to call it -- is so bad that I can't tolerate any medication anymore. Most tend to produce crashes that leave me feeling weak and short-of-breath.
Posted 25 October 2016 - 04:05 PM
Mood instability and anxiety is still a huge problem, but unfortunately there's nothing I can really do about that.
If you mean emotional lability, which is one of the known symptoms of CFS, there are some treatments: the tricyclic antidepressant amitriptyline is one treatment; also, dextromethorphan (which is used a cough mixture and can be bought OTC) can also help.
See the Wikipedia article on emotional lability (aka: pseudobulbar affect).
Unfortunately, my 'adrenal fatigue' (I know that isn't a real dx.) -- but HPA-axis dysfunction or whatever you want to call it -- is so bad that I can't tolerate any medication anymore. Most tend to produce crashes that leave me feeling weak and short-of-breath.
Could it not be a possibility that you have some kind of pathogen induced brain infection?
Posted 25 October 2016 - 04:22 PM
Mood instability and anxiety is still a huge problem, but unfortunately there's nothing I can really do about that.
If you mean emotional lability, which is one of the known symptoms of CFS, there are some treatments: the tricyclic antidepressant amitriptyline is one treatment; also, dextromethorphan (which is used a cough mixture and can be bought OTC) can also help.
See the Wikipedia article on emotional lability (aka: pseudobulbar affect).
Unfortunately, my 'adrenal fatigue' (I know that isn't a real dx.) -- but HPA-axis dysfunction or whatever you want to call it -- is so bad that I can't tolerate any medication anymore. Most tend to produce crashes that leave me feeling weak and short-of-breath.
Could it not be a possibility that you have some kind of pathogen induced brain infection?
What is an example of a pathogen-induced brain infection? How would they test for that?
I thought that it's pretty common for bacterial, parasitic etc. infections to induce mood and neurological changes.
Posted 31 October 2016 - 12:36 PM
I saw my CFS doctor for a follow-up appointment today, after initially seeing her 8 weeks ago. At the first appointment, she ran a stool test, checked me for MTHFR, suggested I have a fungal issue (probably Candida) and instructed me to start detoxing with coffee enemas and Tox-ease by Beyond Balance.
I couldn't afford the Tox-Ease, so have primarily been focusing on the enemas over the past 8 weeks. I get rather significant die-off reactions and see a lot of alien material excreted on a daily basis, but have had no overall improvement in my condition, aside from feeling acutely better for the remainder of the evening after doing the enema.
My doctor is good, but a bit all-over-the-place and she throws a lot of information at you. I tested positive for a Strep overgrowth in my gut, and have non-detectable levels of Lacto and Bifido. She also thinks I have Bartonella due to red dots that have appeared all over my upper arms, and is testing me for it to make sure.
She wants me to:
1. Start taking Methyl-folate (200mcg) for my methylation defects.
2. Start taking Oil of Oregano to kill the Strep and Candida.
3. Start a specialized probiotic she sold me containing only Lacto and Bifido strains.
4. Start using a Zinc + P5P cream I have to get compounded.
5. Start taking the Bartonella formula from Beyond Balance (and I suppose I will have to get the Tox-ease as well).
She said to do each step for one week, then introduce the next.
Here are my concerns:
1. My adrenal fatigue is really bad, and it makes tolerating herxes and die-off extremely difficult. The coffee enemas have helped a little bit, but other means of addressing the issue (Hydrocortisone, Earthing, herbs etc.) just made me feel worse.
2. Isn't it bad to start Methylfolate without the other B-vitamins, esp. B12? I cannot tolerate B12 due to crashes and told her that. I said I was worried about Methyltrapping if I started the Folate on its own, but I don't think she knew what I was referring to.
So I feel nervous about embarking on methylation in a half-assed way without everything else I need, and without knowing if I'm going to be able to tolerate B12. At the same time, I am nervous about starting something as heavy-duty as Oil of Oregano, since any die-off seems to waylay me. I thought about taking the probiotic first (since I have to order all the other supplements from iherb anyway), but even the die-off from the last probiotic I tried (Miyarisan) was pretty intense.
Any advice? Am I right to feel hesitant about starting methylation with just the M-folate, or can it be done that way?
Posted 18 November 2016 - 09:28 PM
I saw my CFS doctor for a follow-up appointment today, after initially seeing her 8 weeks ago. At the first appointment, she ran a stool test, checked me for MTHFR, suggested I have a fungal issue (probably Candida) and instructed me to start detoxing with coffee enemas and Tox-ease by Beyond Balance.
I couldn't afford the Tox-Ease, so have primarily been focusing on the enemas over the past 8 weeks. I get rather significant die-off reactions and see a lot of alien material excreted on a daily basis, but have had no overall improvement in my condition, aside from feeling acutely better for the remainder of the evening after doing the enema.
My doctor is good, but a bit all-over-the-place and she throws a lot of information at you. I tested positive for a Strep overgrowth in my gut, and have non-detectable levels of Lacto and Bifido. She also thinks I have Bartonella due to red dots that have appeared all over my upper arms, and is testing me for it to make sure.
She wants me to:
1. Start taking Methyl-folate (200mcg) for my methylation defects.
2. Start taking Oil of Oregano to kill the Strep and Candida.
3. Start a specialized probiotic she sold me containing only Lacto and Bifido strains.
4. Start using a Zinc + P5P cream I have to get compounded.
5. Start taking the Bartonella formula from Beyond Balance (and I suppose I will have to get the Tox-ease as well).
She said to do each step for one week, then introduce the next.
Here are my concerns:
1. My adrenal fatigue is really bad, and it makes tolerating herxes and die-off extremely difficult. The coffee enemas have helped a little bit, but other means of addressing the issue (Hydrocortisone, Earthing, herbs etc.) just made me feel worse.
2. Isn't it bad to start Methylfolate without the other B-vitamins, esp. B12? I cannot tolerate B12 due to crashes and told her that. I said I was worried about Methyltrapping if I started the Folate on its own, but I don't think she knew what I was referring to.
So I feel nervous about embarking on methylation in a half-assed way without everything else I need, and without knowing if I'm going to be able to tolerate B12. At the same time, I am nervous about starting something as heavy-duty as Oil of Oregano, since any die-off seems to waylay me. I thought about taking the probiotic first (since I have to order all the other supplements from iherb anyway), but even the die-off from the last probiotic I tried (Miyarisan) was pretty intense.
Any advice? Am I right to feel hesitant about starting methylation with just the M-folate, or can it be done that way?
Hi oddspot, how is your progress going?
Posted 19 November 2016 - 01:17 PM
I saw my CFS doctor for a follow-up appointment today, after initially seeing her 8 weeks ago. At the first appointment, she ran a stool test, checked me for MTHFR, suggested I have a fungal issue (probably Candida) and instructed me to start detoxing with coffee enemas and Tox-ease by Beyond Balance.
I couldn't afford the Tox-Ease, so have primarily been focusing on the enemas over the past 8 weeks. I get rather significant die-off reactions and see a lot of alien material excreted on a daily basis, but have had no overall improvement in my condition, aside from feeling acutely better for the remainder of the evening after doing the enema.
My doctor is good, but a bit all-over-the-place and she throws a lot of information at you. I tested positive for a Strep overgrowth in my gut, and have non-detectable levels of Lacto and Bifido. She also thinks I have Bartonella due to red dots that have appeared all over my upper arms, and is testing me for it to make sure.
She wants me to:
1. Start taking Methyl-folate (200mcg) for my methylation defects.
2. Start taking Oil of Oregano to kill the Strep and Candida.
3. Start a specialized probiotic she sold me containing only Lacto and Bifido strains.
4. Start using a Zinc + P5P cream I have to get compounded.
5. Start taking the Bartonella formula from Beyond Balance (and I suppose I will have to get the Tox-ease as well).
She said to do each step for one week, then introduce the next.
Here are my concerns:
1. My adrenal fatigue is really bad, and it makes tolerating herxes and die-off extremely difficult. The coffee enemas have helped a little bit, but other means of addressing the issue (Hydrocortisone, Earthing, herbs etc.) just made me feel worse.
2. Isn't it bad to start Methylfolate without the other B-vitamins, esp. B12? I cannot tolerate B12 due to crashes and told her that. I said I was worried about Methyltrapping if I started the Folate on its own, but I don't think she knew what I was referring to.
So I feel nervous about embarking on methylation in a half-assed way without everything else I need, and without knowing if I'm going to be able to tolerate B12. At the same time, I am nervous about starting something as heavy-duty as Oil of Oregano, since any die-off seems to waylay me. I thought about taking the probiotic first (since I have to order all the other supplements from iherb anyway), but even the die-off from the last probiotic I tried (Miyarisan) was pretty intense.
Any advice? Am I right to feel hesitant about starting methylation with just the M-folate, or can it be done that way?
Hi oddspot, how is your progress going?
Pretty badly.
I have tried to implement some of my doctors suggestions. However, I get unbearable 'crashes' or 'detox reactions' or whatever on basic supplements like Methyl-B12, Folate etc. I try to keep the doses low, but it's impossible to make sense of what is happening when I react so strongly to everything.
I have a script for a couple of antibiotics the GI I saw uses for his IBS programme -- Rifaximin, Vancomycan and one other I think. My CFS doctor did not think I will tolerate antibiotics. However, rather than tinkering around with vitamins for weeks on end, I am going to give them a shot, and then if I don't see some tangible improvement from targeting the gut infections directly, I am done. It isn't humanly possible to carry on living like this.
Posted 23 April 2022 - 08:41 AM
Edited by kurdishfella, 23 April 2022 - 08:57 AM.
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