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Yes major CFS! What my doctor recommended for me is: Corvalen M Ribose by Douglas Laboratories. It's working. They explain it on-line how it works.

Yes, I am and it's incredibly difficult. I love life and being active and productive and some days I can't get out of bed. It's been a long journey of discovery. I found out I have the MTHFR mutation which did have something to do with it, but am now on a supplement called methyl-life which helps, but is not a cure by any means. Thank you for posting. I"ve been wondering about what role genetics play in this condition.
I've had Epstein Barr and cytomegalovirus and scarlet fever and chicken pox so my doctor thinks that could be the reason, but I have always been exceedingly tired since I was a toddler. My mom said my catch phrase as a kid was, "I'm SOOOO tired".
I was strict Paleo for 2 years and it only made me feel worse. My blood levels were healthier (cholesterol and triglycerides lowered) but I had severe fatigue and migraines all the time. I still endorse it in general but for me, now I just eat gluten free and avoid allergens/inflammatory foods such as corn, sugar, dairy, soy and peanuts.

@@XY6426
There are a lot of parallels between our two stories. Mercury, methylation, mycoplasma and currently Mast cell. The secret to recovery is not to get stuck on the single illness/magic pill mindset. If there is one thing wrong with us, there can be two...or three or four...
I also was told that my B12 was on the high side. I am now take 2 mg/day injected and rely on osmosis to get it where it needs to go. Our answers lie outside the box.
Everyone with methylation problems needs to be checked for heavy metal toxicity.
Congratulations on your recovery. Not that many people find their way back.

I was diagnosed with CF by Neurologist and told to live with it. My friend suggested go to a Lyme Doctor. Turns out I had Lyme, Candida, Mycotoxins and Ebstein Barr and heavy metals due to B-12 Deficiency. (Regular hematologist said my b-12 was fine!) I have all the methylation gene issues as well...

Found the deficiency through a methylmalonic acid test and high cysteine levels. Methyl b-12 shots cured the B-12 deficiency, which jump started the methylation cycle, which gave me full blown chronic fatigue...

Long story short: In my opinion, CF is a detox problem. It took 3 months of cilantro/parsley/celery shakes plus Pure Encapsulations Detox pack to get rid of all the toxins and extra Magnesium/ALA. Antibiotics killed the Lyme (noticed a big difference after 2 weeks of Doxy), Flucozinole (10 days on/off) killed the Candida (which was the source of my numbness and tingling in hands and feet). . My hands would get numb and fingertips red and I would start tingling and internal vibrating when I started detoxing. Once I was rid of heavy metals my health drastically increased.

Here is what I learned the hard way. When you start to detox ... More

I was diagnosed with CF by Neurologist and told to live with it. My friend suggested go to a Lyme Doctor. Turns out I had Lyme, Candida, Mycotoxins and Ebstein Barr and heavy metals due to B-12 Deficiency. (Regular hematologist said my b-12 was fine!) I have all the methylation gene issues as well...

Found the deficiency through a methylmalonic acid test and high cysteine levels. Methyl b-12 shots cured the B-12 deficiency, which jump started the methylation cycle, which gave me full blown chronic fatigue...

Long story short: In my opinion, CF is a detox problem. It took 3 months of cilantro/parsley/celery shakes plus Pure Encapsulations Detox pack to get rid of all the toxins and extra Magnesium/ALA. Antibiotics killed the Lyme (noticed a big difference after 2 weeks of Doxy), Flucozinole (10 days on/off) killed the Candida (which was the source of my numbness and tingling in hands and feet). . My hands would get numb and fingertips red and I would start tingling and internal vibrating when I started detoxing. Once I was rid of heavy metals my health drastically increased.

Here is what I learned the hard way. When you start to detox, you liver will dump everything back into the small intestine where it will be reabsorbed. You need to be on some sort of binder and take it 2 hours after each meal to effectively mop up the toxins. I was on cholestyramine but that is good for toxins in the blood actually made me feel worse (not sure why). Instead, I take two charcoal/two modified citrus pectin for binders. This has made a huge difference and now I am at 90%...About to get a LDI shot for EBV because of chronic swollen glands. Make sure you are taking an epson salt bath every night which will help you detoxify...

This has taken me 15 months to work this out. You have to address each problem and then adjust your supplements, lifestyle, mental health, etc...Stress can kill you! It's very stressful not knowing why you are sick. But you can and will get better if you keep digging and are willing to experiment! I can't really take a multivitamin, not sure why really. I also realized the Pyroxine form of B6 is no good for me. I started Resveritol and was feeling amazing and found out later it is made from Japanese Knotweed, which kills Lyme. So, as you can see, its complicated but you can feel better!!! Don't give up!!! Less

Chronic Fatigue is not clearly defined and is a catch-all for things doctors can't pigeon hole somewhere else. If you are searching for relief, check out the symptoms of Lyme Disease and if appropriate find a Lyme specialist. The CDC says Lyme does not go chronic so normal infectious disease doctors won't or can't help you. Good luck. My wife only got relief after finding out about Lyme and checking with a specialist and following their advice and protocalls.

https://youtu.be/mjnGWSyxWJ0

To @NL1949, I get adenosylcobalamin from Amazon or Seeking Health. It's 3 mg, a perfect daily dose for me and makes a huge difference for me compared to methylcobalamin. The product is called Adeno B12.

I first started my chronic fatigue symptoms back in '83. I didn't know anything about methylation issues. In hindsight, it was triggered by toxic overload. I overcame it at the time by eliminating MSG, and moving. Over the years when my chronic fatigue would resurface I'd research more dietary and environmental toxins, clean those up and get over it. Eventually I was so drastically poisoned that I hit the bottom. Fast forward, DNA testing shows multiple methylation errors. You need to avoid toxins, not just take supplements. They works together because you need to be able to methylate to produce glutathione, the body's #1 detoxifier. Glutathione is also necessary to produce ATP, and for oxygen transport. There are tons more, but these are the most relevant. So in addition to your mB's you may want to work with your Dr (I'm working with Dr. Yasko and an EI specialist) to add glutathione, ATP and IV C (the latter recharges spent glutathione). We're metabollically depleted of methyl end products.

Agree with the B12 angle, the main reason for the B12 results being wrong is the tests are nearly always serum tests, plasma tests will give better results than serum tests, I have a very complex B12 set of issues, Freddd's stuff on B12 is what helped me the most, I need both active forms, 5mg of MethyB12 and as much as a want of AdB12, I need active B9 and active B6 between the lot of them and B1 I live a pretty normal life, I do have mitochondrial issues as well so CFS is very real for me not just a B12 issue, my mito issues are both a lack of zinc and magnesium.

Guys, please take me very seriously, I was told I have fibro, ME/CFS years ago and then years later when I became seriously ill and researching I found some information that is life changing. First of all, the reason people are slipping through the net is because the test for this is flawed, you can have this and still have normal test results. Vitamin B12 deficiency. People say to me after I tell them this, yes but I had it tested, it's ok, but this is the whole point, it can say it's ok when it most certainly is not! I was dying, 42 years old and I was like a full blown dementia patient, I couldn't walk, stand, speak properly, there are so many symptoms and Drs fail to recognise these as all having one cause. They will tell you that you're depressed, it's in your head, there is nothing wrong with you. I am begging you to forget your Drs claims that they find nothing wrong, therefore you just have these throw away illnesses that they don't really know the cause.

I admin on a Facebook support group with going on ... More

Guys, please take me very seriously, I was told I have fibro, ME/CFS years ago and then years later when I became seriously ill and researching I found some information that is life changing. First of all, the reason people are slipping through the net is because the test for this is flawed, you can have this and still have normal test results. Vitamin B12 deficiency. People say to me after I tell them this, yes but I had it tested, it's ok, but this is the whole point, it can say it's ok when it most certainly is not! I was dying, 42 years old and I was like a full blown dementia patient, I couldn't walk, stand, speak properly, there are so many symptoms and Drs fail to recognise these as all having one cause. They will tell you that you're depressed, it's in your head, there is nothing wrong with you. I am begging you to forget your Drs claims that they find nothing wrong, therefore you just have these throw away illnesses that they don't really know the cause.

I admin on a Facebook support group with going on for 9000 members now, there were 400 when I joined less than 3 years ago, it is worldwide and we help everyone who wants our help, we are fighting with all we have to change how this is dealt with because our Drs are killing us, unintentionally of course, because they were never properly educated about the damage this does.

Further information, look for a book called: Could it Be Vitamin B12 deficiency a epidemic of misdiagnoses. By a pair of Drs, Sally Pacholok and Jeffrey Stewart, it is an eye opener.

On YouTube, search for: Diagnosing and treating vitamin B12 deficiency. There are several Drs in this 50 minute long eye opening video. One of the Drs himself is dying and his family are basically told to put him into a hospice type place, had his Dr friend given up on him, he would be dead, himself a Dr and he could not diagnose his own problem.

I sincerely hope these links will not be blocked. Look at the symptoms, look all to familiar?

Http://www.b12deficiency.info/signs-and-symptoms.html

Look at the various pages on that website, look at the life savers, important links, one which sends you to the Facebook support group.

I know it comes across as being very hard to believe but you have nothing to lose, it will cost you nothing. This is proof you can be deficient with normal levels & have neurological symptoms.

http://www.ukneqas-haematinics.org.uk/content/News.asp?id=46

We are not a silly group of people who have nothing better to do with our time, we are fighting for change and everything we advise we can back up with legitimate research which can be given to your Drs. We do not go off genes, it's just that I am here because there are some who do have the problem because of certain genes but we go off what we know works and if one doesn't work so to speak, there are others we advise that will if you go through the process and we pick up on what issues are likely to be affecting you. If we don't think this is your problem, we will say so. So please help yourselves.

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Yep, a response of any type suggests a problem. I never had your reaction but I still broke the tabs into smaller portions and introduced them gradually - especially in the early days. This was part of Freddd's protocol over on Phoenix Rising. I needed to add carnitine-l-fumerate to realize the full benefit from the adnB12.

where do you get the adenosylcobalamin? I have tried it but could only find it in a really high dose that crashed me, but the crash means an obvious need for it too....thanks so much for the great info

@DU4948 B12 is one of the key things for me too, along with P5P, methyltetrahydrofolate 15mg per day (is the only one that works for me) and loads of Adenosylcobalamin 15mg per day, methylcobalamin blows my head off so does most of the methyl donors. My combo works very well for me.

ME/CFS needed a 3-prong approach. a) Heavy metal detox. Everyone with significant methylation impairment should be checked. We have problems in the system involved in detox. b) Methylation support. For me mB12 turned on the lights and I still take 2 needles a day. c) Dealing with Chronic Infections. I have HHV-6 and mycoplasma. This was as big of an improvement as the B12. These things have taken me from my wife helping me to stand in 2011 to working outside for 7 hours a day. Brain-fog is gone much of the time.
These are the big steps but there were many smaller ones.

@@DS5446 chelators, I have a little experience of most of them I am over 650 chelation days so far, this is my take on the ones I have used.

DMSA, great for lead, but really smashes up my gut, I have two forms of candida that both get very aggravated with DMSA, so I have given up using it.

EDTA, talked to my doctor about this, he said it was not the right thing to take for my issues, Andy Cutler said exactly the same, there are specific cases where this is the right thing to take but for most people it is not a good idea.

DMPS, a lot of people take this because it has a long half life, I considered it and my doctor was prepared to prescribe it but I did not take it in the end.

Cilantro, tried this it made me really sick, zero improvement, I have read a lot of stories now of people feeling the same, it just does not bond to the metals well enough and drops them too quickly.

Chlorella, tried this too, it made me really sick, zero improvement, same as above.

ALA, this is the king of the ... More

@@DS5446 chelators, I have a little experience of most of them I am over 650 chelation days so far, this is my take on the ones I have used.

DMSA, great for lead, but really smashes up my gut, I have two forms of candida that both get very aggravated with DMSA, so I have given up using it.

EDTA, talked to my doctor about this, he said it was not the right thing to take for my issues, Andy Cutler said exactly the same, there are specific cases where this is the right thing to take but for most people it is not a good idea.

DMPS, a lot of people take this because it has a long half life, I considered it and my doctor was prepared to prescribe it but I did not take it in the end.

Cilantro, tried this it made me really sick, zero improvement, I have read a lot of stories now of people feeling the same, it just does not bond to the metals well enough and drops them too quickly.

Chlorella, tried this too, it made me really sick, zero improvement, same as above.

ALA, this is the king of the chelators if your issues are mercury then this is the ONLY thing that will get you better bar none, there is some evidence that Cilantro or Chlorella can get through the blood brain barrier (I can't remember where I read it) but the half lives are unknown with them so you cannot work out a decent schedule, ALA is the only one of the main chelators that can get into the brain DMSA, DMPS cannot, they will clear the body but not the brain of mercury. ALA must be taken on a very strict schedule orally, IV is a bad idea, read too many bad stories. My schedule is very strict less than every 2 hours during the day and just over 2 hours at night for a minimum of 3 days, dosages I have taken everything from 10mg to 400mg doses, currently happy on 100mg doses, maximum round (doses taken in a collection) length was 50 days, I am happy with 6-7 days currently, day 1 is always the same, a little lightheaded, day 2 is the hard day for me, its always rough, the days get better and better on round to day 8, at that point I get zero symptoms all the way through the round, I forget I am actually on round it is that smooth, last day of the round, 4 hours after my last dose I get tired, like a hangover, it does not matter what I do I always feel the same, I take a lot of vitamin C, Magnesium and NAC on that day this makes day 2 after the round much much better for me.

If you are not already on the FDC group that follows Andy Cutlers protocol I would recommend you signup I know a lot of people that have got themselves 100% better on his protocol and they were very sick to start with.

atb

alex Less

@MZ5883. Thank you for your post. Yes. Chronic fatigue is a vague diagnosis.
I have been looking over the MTHFR part. I have done chelation before for metals
and they have come down slowly. I was wondering if you used IV chelation
ie, EDTA or DMPS in
treating yours, oral chelation DMSA ALA? or some other approach. Any info
appreciated. Do you retest via Doctors Data?
LF1235 Thank you for this link. I will check it out also.

If you have been diagnosed with chronic fatigue or fibromyalgia and can't get relief, even with a study of your genetic patterns but have been bitten by a tick sometime in the past (you might not have noticed) or have visited (camping or outing) where deer live, you might want to consider reading up on LYME DISEASE which has many overlapping symptoms. Most doctors don't know much about Lyme Disease but it is spreading all over the U.S. If treated right away you will be fine but if misdiagnosed and not treated it will go chronic. Infectious Disease doctors using protocols approved by the Center for Disease Control (CDC) will not treat or admit that chronic Lyme Disease even exists. Well it does, and you have to search out a doctor who will deal with it. Check it out.

CFS is a very vague diagnosis, I have been diagnosed with it, it is pretty meaningless from a practical perspective, understanding why you are fatigued can be a very long process, for me it is a number of things, mitochondrial dysfunction, adrenal insufficiency in my case looks very much like CFS, so muddies the waters significantly.

Key things, if you have any of the MTHFR mutations, then it is very likely you will need methyl-folate and B12, but for these to be got right you have to understand all the related mutations as a whole to get the combinations just right.

My CFS was at its core, very very low level of both zinc and magnesium at a cellular level, fixing these was what pulled me out of the worst of CFS, this happened because mercury displaced both of them, so removing the mercury, lead, aluminium, cadmium was key (still doing it today, but 5 years after being diagnosed I function about 95% every day, not been sick enough not to work for over a year now, given I was bedridden 5 years ago, it is a pretty good recovery).

With MTHFR mutations, comes in a lot of cases methylation ... More

CFS is a very vague diagnosis, I have been diagnosed with it, it is pretty meaningless from a practical perspective, understanding why you are fatigued can be a very long process, for me it is a number of things, mitochondrial dysfunction, adrenal insufficiency in my case looks very much like CFS, so muddies the waters significantly.

Key things, if you have any of the MTHFR mutations, then it is very likely you will need methyl-folate and B12, but for these to be got right you have to understand all the related mutations as a whole to get the combinations just right.

My CFS was at its core, very very low level of both zinc and magnesium at a cellular level, fixing these was what pulled me out of the worst of CFS, this happened because mercury displaced both of them, so removing the mercury, lead, aluminium, cadmium was key (still doing it today, but 5 years after being diagnosed I function about 95% every day, not been sick enough not to work for over a year now, given I was bedridden 5 years ago, it is a pretty good recovery).

With MTHFR mutations, comes in a lot of cases methylation issues, this are very complex to fix you really need someone that properly understands this stuff to help you, too much or two little in the way of methyl donors can have a massive impact on how you feel.

Normal folic acid 1mg in one day and I am pretty sick for days, more than 3mg of Methyl-B12 and I have issues too, but using the right version of methyl-folate and Ad-B12 these issues don't happen at all, but this is very individual.

atb

alex
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As someone with clinically diagnosed Hypothyroidism, Fibromyalgia, CFS, POTS, Hypermobility (not EDS), Osteoarthritis, MTHFR & DSPS I wasn't surprised to find so many of my genes screwed up! However the biggest improvement in my CFS symptoms has linked with the MTHFR treatment & since getting my raw data analysed I've found my system struggles to convert any of the necessary things the body needs such as T4 to T3, Folic to Methlyfolate, B12 to Methylcobalamin, Vit D, Vit A, the list goes on. Since taking initially Dr Bill Rawls Restore Supplement Programme for Fibromyalgia & Lyme sufferers & later adding in additional Methylfolate & Methylcobalamin the active forms of B9 and B12 I've felt much better. I'm starting active B6 soon as well & being tested for MCAD. It's really a trial & error process for everything and fairly unique to every individual what works for one doesn't necessarily work for another.

I was just diagnosed with CIRS, highly allergic to mold and have worked and lived in a moldy environment. I am currently working with a doctor trained by Dr Richie shoemaker, in just a couple of weeks I am noticing a difference.
I just don;t know about the life afterwards. Extreme mold avoidance, And I have histamine issues as well.