1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The ePatient Revolution
Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ...
Discuss the article on the Forums.

Something's not right with my methylation protocol...

Discussion in 'General ME/CFS Discussion' started by Antares in NYC, Jul 21, 2014.

  1. Antares in NYC

    Antares in NYC Senior Member

    Messages:
    170
    Likes:
    226
    USA
    Hi everyone,

    About three weeks ago I started the Rich Van Konynenburg protocol, and I have the feeling I'm doing something wrong. Either I'm taking the supplements the wrong way (or at the wrong times of the day), or one of the supplements is making me sicker. There's also a possibility that one or more of these supplements could have a bad interaction with the medications I'm taking for ME/CFS and lyme (several types of ABX, anti-virals, etc).

    Since I started the methylation protocol, I have been feeling sicker, more tired and "out of it" than before.
    I take the supplements in the morning with breakfast. A couple of hours later my energy levels come down severely, and I feel like my breathing slows down, becomes labored, like I have to breathe deeper to function. The brain fog surges to seriously disabling levels, and I even start slurring my speech. It got me worried.

    I stopped the methylation process last Friday to see if I noticed a difference. I also stopped all the medications for that day, to give my body a break. The next day I felt better already, which indicates to me that something in the protocol is not sitting well with me.

    Yesterday I started taking the supplements again, one at a time, to see if I can identify which one is the one that's making me so exhausted. Not sure which one it is yet. It may be a specific combination, or it could be a bad interaction with the many prescriptions I have to take. I will take notes and see if there's a pattern to identify the culprit.

    Can't emphasize enough how nauseous, brain-fogged and tired the methylation made me. Need to figure out why.

    I would appreciate it if anyone that experienced something similar could put me on the right direction. Paging @caledonia, @taniaaust1, @Valentijn, @Martial, @Helen.
     
  2. Antares in NYC

    Antares in NYC Senior Member

    Messages:
    170
    Likes:
    226
    USA
    Today I continued experimenting with the items from the protocol to see if I can figure out which one is making me sicker.

    This morning I took two of the supplements in the protocol around 8am with breakfast, and the weird feeling has already started at 11.00am ET. Also note that I took my antivirals and antibiotics as well.

    This is what I took this morning:
    • One capsule of All in One™ Multi-Vitamin / Mineral 120 Capsules from Holistic Health Consultants (please note they no longer sell the General Vitamin Neurological Health Formula that was recommended in Rich's protocol, but they offer you this multivitamin and mineral complex as a substitute): http://www.holisticheal.com/all-in-one-multi-vitamin-mineral-120-capsules.html
    • One softgel capsule Phosphatidyl Serine Complex (Vitamin Discount Center)
    One of these two is having a pretty bad effect on me. Feeling really messed up already just three hours after taking it. Labored breathing, severe brain-fog (worse than usual), things "slowing down" around me. I feel I just need to go home and get in bed. :(

    Funny enough, when I started the methylation protocol and noticed the weird symptoms, I thought that the folate could be the culprit, but I'm starting to narrow it down to the two items listed above.
     
    Last edited: Jul 21, 2014
  3. sueami

    sueami Senior Member

    Messages:
    185
    Likes:
    140
    Front Range Colorado
    I'm following Freddd's methylation protocol, which appears to be much different that what you are attempting. I did notice though that your multi vitamin has folic acid in it, which is the biggest thing to avoid on a methylation protocol.
     
    Antares in NYC likes this.
  4. Antares in NYC

    Antares in NYC Senior Member

    Messages:
    170
    Likes:
    226
    USA
    Thanks sueami. Isn't folic acid and folate the same thing? Both methylation protocols include methylfolate or folate.
    Again, I'm no doctor or chemist. Just trying to figure this one out.

    PS: my money is on the multi-vitamin. Phosphatidyl Serine never gave me any problems before. Plus I just realized that multi-vitamin complex has huge amounts of manganese, which people with Lyme should avoid, as it only feeds the bugs: http://www.huffingtonpost.com/2013/03/24/lyme-disease-bacteria-immune-system-iron_n_2934134.html

    I bet there are other components in that multi-vitamin complex that are making me ill. I think this one may be the culprit.
     
    Last edited: Jul 21, 2014
    taniaaust1 likes this.
  5. Antares in NYC

    Antares in NYC Senior Member

    Messages:
    170
    Likes:
    226
    USA
    Another question: given my genetic profile, people have recommended me the Van Konynenburg protocol. Should I be doing Fredd's protocol instead? Any pros and cons to each protocol?

    Thanks in advance.
     
  6. sueami

    sueami Senior Member

    Messages:
    185
    Likes:
    140
    Front Range Colorado
    No, folic acid is the widely used, cheaply made version and it's either not bio-available or in some way de-rails the methylation cycle rather than feeding it, or both. I was reading about that early on when the brain fog was dense, so I don't remember, beyond the caution to avoid it at all costs.

    Because Freddd's protocol evolved out of Rich's, to make it more effective for at least some people, I decided to follow it.

    I don't know if anyone has picked up the torch in the wake of Rich's death and continued to update and tweak his protocol, based on new research, feedback from PWMEs who are trying it or new information about changing supplement formulations. If not, then it is two years out of date, which is a huge amount of time in such a dynamic and little-understood field of inquiry such as methylation.

    Freddd's starts very simply with a low-dose b-complex by nature made, available at most grocery stores. You might try getting on that for a week, while you sort out and let simmer down the reactions you are having. This particular complex, list number 1338 is what you want. Not the superB complex.

    http://www.naturemade.com/vitamins/b-complex/b-complex-with-c

    If you want more information on how to start with Freddd's deadlock quartet (as he calls the four primary supplements needed to restart the healing process that methylation powers), I can offer my understanding of it or you can check out a compendium of his posts in Ahmo's sig or Caledonia has an excellent summary of how to start low and go slow and what mistakes to avoid in methylation support in her signature.
     
    Antares in NYC likes this.
  7. Tammy

    Tammy Senior Member

    Messages:
    365
    Likes:
    305
    New Mexico
    I would continue with your experiment by just taking one of the two supplements you narrowed it down to. You experienced a reaction within several hours so it makes the experiment not so complicated. Were you already doing the antibiotic/anti-virals before starting Riches protocol?
     
    taniaaust1 and Antares in NYC like this.
  8. Helen

    Helen Senior Member

    Messages:
    569
    Likes:
    583
    @Antares in NYC , I agree with Tammy. To start with. Doing a methylation protocol while having an infection can be rather tricky. There are so many factors that can have an impact on your symptoms. Waiting for the result of your first test....
     
  9. Antares in NYC

    Antares in NYC Senior Member

    Messages:
    170
    Likes:
    226
    USA
    Yes, I have been on antivirals for a year... which reminds me that this week, exactly a year ago, I got the diagnosis of ME/CFS after 14 long years chasing my own tail, thanks to scores of inept doctors.

    Then earlier this spring I got several positive tests for Lyme, so I have been on heavy ABX for about three months.

    After getting my genetic profile recently, I decided to start a methylation protocol, which may help with the severe vitamin deficiencies I have been experiencing for years.
     
    Last edited: Jul 21, 2014
  10. Antares in NYC

    Antares in NYC Senior Member

    Messages:
    170
    Likes:
    226
    USA
    Hi Helen,
    Every blood test result I get to monitor my condition keeps showing off-the-charts levels of EBV, high HHV6, high cPN, bartonella, and then Lyme. Nothing makes a dent with these numbers. EBV seems even higher now, after a year on antivirals.

    Then, they also show all the markers for ME/CFS: extremely low NK cell count and function, high Leptin, high EOS, increasing vitamin and mineral deficiencies, etc...

    If I had to wait until I didn't have an infection to start methylation.... well, I guess I would never start, until someone figures out a cure for this awful thing we have! Given my genetic profile, even my doctor suggested I should consider a methylation protocol.

    PS: I'm almost convinced it's the mutli-vitamin complex that's making me so sick. Later I will take the folate with dinner, see if it makes a difference. One supplement at a time...
     
    Last edited: Jul 21, 2014
    taniaaust1 likes this.
  11. caledonia

    caledonia

    Messages:
    3,036
    Likes:
    1,708
    Cincinnati, OH, USA
    I think I would put my money on the All in One too. The All in One replaces the General Neurological Health Formula but it has a lot more stuff in it.

    I've found it to be an EXTREMELY powerful supplement, when combined with sublingual active B12. Debilitated ME patients need to take it easy when starting out. I'm only taking 1/64 of one pill, 2 days a week!

    Assuming you're tolerating the supplement and it's working (a little too well!), it could be potassium deficiency, metal detox or other problems.

    Try reading "Start Low and Go Slow" and "Roadblocks to Successful Methylation" linked in my signature. This will tell you how to be safe doing a methylation protocol and how to debug problems you're having.
     
    Antares in NYC likes this.
  12. Mary

    Mary Senior Member

    Messages:
    266
    Likes:
    183
    I too had a very hard time with Rich's protocol. I tried to do it for 3-1/2 years (2007 - 2010), off and on, had to keep stopping because it always made me feel sick, but at the time it was the only game in town, thought maybe it was making me detox, etc., so I kept trying - I hadn't yet read about Freddd's protocol.

    And then I stumbled across Freddd's posts. I followed his protocol, and within a couple of days my energy increased markedly. It was fabulous. I had none of the sick feeling that I had on Rich's protocol. And then a couple of days later I hit a wall, severe fatigue and lethargy, which, thankfully, Freddd had written about - my potassium levels had tanked. As my body started to heal and work properly, it greatly increased my need for potassium rather suddenly, in effect causing a potassium deficiency. So I started taking potassium, titrated up to 1000 mg. a day for week or so, and the severe fatigue lifted within a relatively short time of adding in the potassium. I now take 400 mg. a day as a maintenance dose.

    So I never did find out what made me feel so awful on Rich's protocol but I never touched his recommended supplements again. I currently take 1600 mcg. of folate (Solgar metafolin), 5,000 sublingual methylcobalamin, 10,000 mcg. dibencozide (Anabol Naturals) and three 855 mg. caps of carnitine fumarate and do fine on all this, as well as 400 mg. potassium gluconate.

    I recently tried to double my folate (big mistake to do it all at once!) as someone on the Prohealth board posted how 5,000 or 6,000 mcg. folate really helped him a lot. Well, it caused a severe detox reaction for me - got very spacey, I felt like I was on a drug and my chiropractor/kinesiologist said it was mercury. I had to back off to my original 1600 mcg. dose, and in the near future am going to try to gradually increase my folate. I wasn't prepared for how hard the detox hit. It was pretty amazing. I could function but was definitely impaired.

    And yes, folic acid is synthetic and some 40% of the population cannot convert it into a form useable by the body. Folic acid (which unfortunately is added to so many foods) can cause a folate deficiency because it competes for absorption with folate. I had been taking plenty of folic acid for years, but I didn't have a folic acid deficiency - I had a folate deficiency. Read what Freddd has to say about this, and do some research on the MTHFR gene mutation - that is, people who can't utilize folic acid. I think folic acid is a huge part of the reason why so many have problems with methylation.

    I'm also wondering if Rich's supplements are causing your potassium levels to drop. But the sick feeling I got while taking them was different than low potassium, but it's possible low potassium could be a contributing factor.

    Read what Freddd has to say potassium - I would have had to stop his protocol if I hadn't known what was going on. Rich never even mentioned potassium problems until I think his last version of his protocol but he never seemed to give it any real weight, unlike Freddd.

    Mary
     
    Antares in NYC likes this.
  13. Martial

    Martial Senior Member

    Messages:
    1,031
    Likes:
    710
    Ventura, CA
    Feeling worse and having ups and downs is a definite norm of methylation healing and detox, most people I talk to mention the crippling effects from working on methylation are actually sometimes more debilitating then the illnesses they are dealing with itself. That being said there are a lot of other variables as others have mentioned as well.

    One possibility often not discussed here is a reaction to vitamin b-6 peridoxine, it is a slim chance to be causing you toxicity at that low of a dose but some people can be affected in smaller amounts. Especially if they have been using supplements with a semi high dose of b6 over an extended period of months or years. Others do mention that P5P is less toxic and will not trigger the same issues, however my personal opinion feels that it does still have the same possible affect albeit perhaps at a higher upper range before kicking in.

    They are both synthetic versions of b6 after all, you will not find P5P or Perodoxine in a normal non fortified diet. I would definitely stop the folic acid though, that is definitely something you should not be taking as it will block absorption of methyl folate in the body. Not only in the vitamin but avoiding all folic acid enriched foods as well.

    Caledonia and myself have pretty good methylation guides in our signatures you can check out as well.
     
    Antares in NYC likes this.
  14. Helen

    Helen Senior Member

    Messages:
    569
    Likes:
    583
    I am sorry to hear about all your signs of ongoing infections, and your doctors neglecting them.

    I didn´t mean that you should wait with a methylation protocol until you have got rid of the infections. My personal view is that it probably is impossible without having an optimal production of reduced glutathione (from methylation). I don´t know your mutations, but if you have some in the methylation cycle (methionine- and folate-) I agree that you should compensate for them with proper supplements. (Me-)B12 and (methyl-)folate as the main substances. Sounds like you have a good doctor. I do hope he/she will guide you in a proper way.

    Besides the optimized production of glutathione as a firts step we also need to have a good binding/conjugating capacity with help of the GST enzymes (glutathione-s-transferase). Many people with ME have mutations in that second step wich complicates the situation even more.

    Yes, one supplement at a time is of course the best. Rich made up his protocol with the idea that it should be simple to start with as people are affected by brain fog and also it should be cheap enough for most people to be able to buy them. In private messages he adjusted the protocol individually. If he had been still alive I am convinced that he should have had reservations in the protocol now that it is evident that some people can´t handle the multivitamins.

    Hope you soon will know which one of the two supplements that gives you problem.
     
    Antares in NYC likes this.
  15. Helen

    Helen Senior Member

    Messages:
    569
    Likes:
    583
    I don´t think the genetic profile could tell what protocol would be the best for you. The outcome of the genetics depends on lots of things. The more of relevant labtests you can have, the more you will know about what´s really going on.

    And I don´t think any of them could be followed as a 5- or a 4-supplement protocol. There are so many variants depending on what you will tolerate. Your need for co-factors and ....and...
     
    Antares in NYC likes this.
  16. Antares in NYC

    Antares in NYC Senior Member

    Messages:
    170
    Likes:
    226
    USA
    For the record, my ME/CFS literate doctor does not neglect any of these infections. As a matter of fact, this is the first doctor to put me on major antivirals (Famvir, Valcyte) and major antibiotics to treat all that's going on. I trust my doctor, who has proven to go out of the way to treat all that ails me. Before 2013, I spent 14 long years bouncing from doctor to doctor that only told me the usual stuff ("it's in your head", "get out more", "try some exercise", "how about some paxil?")

    That said, despite the serious medical treatment I've been on for a year, nothing makes a dent. And some of the titers keep increasing (like EBV, which seems to keep growing off the charts despite a year of heavy antivirals). Not uncommon for other ME/CFS patients. Something about our disease makes our immune system less effective to fight concurrent infections. It is known that both EBV and Lyme produce substances to evade attacks from your immune defenses, which is part of why they are so nasty and difficult to treat.
     
  17. Antares in NYC

    Antares in NYC Senior Member

    Messages:
    170
    Likes:
    226
    USA
    OK, day two of methylation experiment:

    - I woke up extremely tired. Had a really hard time getting out of bed, as if I didn't sleep at all. Awful brain-fog already to start the day.

    - Today I tried the Phosphatidyl Serine and the Perque hydroxo-B12 complex with breakfast, to see if I feel any different from yesterday.

    - It may be a difficult day to tell, since I already woke up completely beat up. I feel very brain-fogged, "out-of-it", and tired, but can't discern if it's the weird sleep patterns or any of the supplements. Yesterday I noticed a major slow down just a couple of hours after taking Acetyl Serine and the ALL-In-One formula, which happens to contain a lot of elements that I should not be taking (including folic acid, manganese, and taurine --which has the same effect as a gallon of coffee for me).

    ON EDIT:
    11.00am ET - three hours after breakfast, I feel pretty brain-fogged, but I don't think the Perque B-12 or Phosphatidyl Serine made it worse; I woke up already this messed up. Certainly not as sick as I felt yesterday, but definitely out of it.

    12.30pm ET - nausea increasing, and so did the brain-fog. Not as awful and disabling as yesterday, but certainly noticeable. Wonder if the Phosphatidyl Serine has something to do with it... or the mixture with the two antivirals and three abx I have to take every day too...

    I will dare to take the 1/4 chips of folate during lunch, see if that alters things.

    (PS: isn't it amazing how much we end up experimenting, since we have basically been abandoned by the medical establishment? You would think we don't live in the era of the Reformation, but not too far off)
     
    Last edited: Jul 22, 2014
  18. Mary

    Mary Senior Member

    Messages:
    266
    Likes:
    183

    I think there is something besides methylation going on with Rich's supplements. I did tell myself for 3-1/2 years that I was detoxing or whatever, and kept trying and stopping Rich's supplements, over and over again. And I felt like crap each time I was on them. It was entirely different when I switched to Freddd's suggested supplements - none of that sick feeling and the only negative reaction which was actually a good thing was my potassium dropping, which was easily fixed.

    I think it might be a good idea for Antares to stop Rich's supps and give Freddd's a try.

    I do take p-5-p with no bad side effects by the way - it increased my energy a little too.

    Mary
     
    Antares in NYC likes this.
  19. xrunner

    xrunner Senior Member

    Messages:
    636
    Likes:
    311
    Surrey
    Hi @Antares in NYC
    Rich's protocol has been tested on CFS patients and it works just fine.
    The main problem with it is that we may be intolerant to one of the many ingredients in the multi. I never used it because I couldn't tolerate half of it. That can cause all sorts of reactions.
    In addition there's the potential that some of the phytochemicals and aminoacids in it may interfere with meds metabolism and detox.

    In my case, I just used a B complex with all the folate needed (Thorne B basic), B12 and a multimineral.
    For any specific vitamin deficiencies, those can be added individually as needed but, in my experience those aren't necessary for the protocol to work if you're diet is ok.

    Also, in later protocol versions, Phosphatidylserine was replaced with Phosphatidylcholine because the first one may lower cortisol levels which may be a problem in ME where cortisol levels may be already low. On the other hand phoschol doesn't affect cortisol whilst it's probably better at repairing cell membranes.

    One the problems with alternative protocols is the high amount of folate and B12 which could accelerate cell division and viral replication if you have infections, which in your case is something to ponder over.
     
    Last edited: Jul 22, 2014
    taniaaust1 likes this.
  20. xrunner

    xrunner Senior Member

    Messages:
    636
    Likes:
    311
    Surrey
    You may also want to look into Gcmaf as a way to overcome your immune suppression which would help your immune system recover and deal with the viruses.
     

See more popular forum discussions.

Share This Page