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

[Antares in NYC]

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.

Would love to try Gcmaf... but the cost is prohibitive. Don't think I can afford it, unless someone knows of cheaper alternatives.

 

[Antares in NYC]

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.

Something in the All-In-One multi didn't sit well with me. It did affect my sleep quite negatively as well. Slept about 7.5 hours, felt absolutely beat up upon waking up[ (worse than usual). Interesting to note that this awful feeling upon waking up has been taking place since I started the methylation protocol.

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.

Very interesting. My tests for cortisol levels oscillate between 'normal" and "low". Wonder if this has something to do with it.

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.

Point taken. Nothing seems to be making a dent with the high titres for all viruses and bacteria, though.

 

[Antares in NYC]

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.

Glad you just mentioned that. I went back to the supplements and noticed that the Phosphatidyl Serine Complex 500mg contains more stuff than Phosphatidyl Serine. Each softgel contains:

• harp-PS® GREEN (phosphatidylserine complex containing sunflower lecithin and medium chain triglycerides (MCT) from palm kernel oil) (standardized at 18% phosphatidylserine equal to 100 mg):
• phosphatidylserine 100 mg
• phosphatidylcholine 45 mg/serving
• phosphatidylethanolamine 10 mg
• phosphatidylinositol 5 mg
• Phosphatidic Acid
  
• Soy Phospholipids & Glycosides

I have never experienced any reactions to phosphatidyl serine, but this is different. This one has a lot of other stuff, whcih may account for the mind nausea I'm experiencing today. While the All-In-One multi complex had a more extreme effect on me, I feel this one is giving me mild nausea and slight vertigo. Could any of the components listed above account for the nauseous feeling?

Continuing with the experiment, I just had lunch and took the folate, in addition to my prescriptions. Crossing fingers.

 

[Helen]

At least theoretically phosphatidylserine could lower your cortisol even more, which also lowers blood pressure that could cause vertigo. Low cortisol also causes hypoglycemia. Rich recommended lecithin instead, if low cortisol.

 

[Helen]

Hi @Antares in NYC
...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....

Xrunner, you raise an interesting question for all people with ongoing infections and blocked methylation. With B12 and/or folate deficiencies I guess we just have to supplement to get normal levels again.

 

[Antares in NYC]

One hour after lunch... Brain fog and disorientation increasing a lot. Similar to what I experienced yesterday in the morning. Ugh oh...

 

[Helen]

Did you check your prescriptions and their side effects? How much B12 you are taking and what kind of?
Do you possibly take too much folate compaired to your B12 supplementation?

 

[Antares in NYC]

Did you check your prescriptions and their side effects? How much B12 you are taking and what kind of?
Do you possibly take too much folate compared to your B12 supplementation?

I've been taking daily the exact recommendation in Rich's protocol:

- Folapro: 1/4 of a tablet (5-methyl tetrahydrofolate)
- Intrinsic B12/folate: 1/4 of a tablet
- Activated B12 Guard (Perque)(2,000 micrograms hydroxocobalamin)

The brain-fog, nausea and disorientation seem to have plateau. Not as awful as yesterday (which almost rendered me in bed), but more than half as bad. It also seem to come and go in waves. One moment I'm very nauseous and disoriented... ten minutes later it seems to ease up for a while. Then the nausea comes back again... and so forth. Ugh...

 

[Antares in NYC]

Well, I gave myself a break today since I was so sick for the last couple of days.
Wanted to report that by the end of the day yesterday, i was quite brain-fogged, and my memory a total mess. Serious IBS issues started to manifest too.

Next test will be just the Perque hydroxo-B12 and the folate, no other supplements, and see what this does to me.

Wondering if these side effects are cumulative to the many antibiotics and antivirals that I'm taking already. They make me mildly nauseous to begin with.

So to recap my experiment:

Monday: All-in-One + Phosphatidyl Serine complex: major nausea, awful brain fog, disorientation, memory impairment, severe fatigue.

Tuesday: Hydroxo-B12 + Phosphatidyl Serine complex: mild nausea, mild brain fog. Added the folate at dinner, and the cognitive issues and disorientation increased a bit more.

Tomorrow I'm trying Hydroxo-B12 and folate only, see what happens.

 

[taniaaust1]

I personally dont like multi vitamin complexes, in my own case the common folate in them and also the copper in them arent good for me. (I already had too much copper, you could consider getting a hair test done to see what your copper is doing as copper is stored in tissues and not in blood).

I think you are doing the right thing with trying to work it out by testing each (that may also help you find out something more to do with your illness).
...........

As far as Fredd and Rich's protocols go, it was always the case of people often doing better on one of them or the other but yeah, I do think its a good idea for you to figure out what you react badly too to learn more about your bodies reactions to things.

 

[Antares in NYC]

Hi everyone,

I wanted to share the results of my experiment with Rich's protocol, since I think I have identified the items that make me sick. This what I tried, and how my body reacted:

• Monday: All-in-One + Phosphatidyl Serine complex: major nausea, awful brain fog, disorientation, memory impairment, severe fatigue.
• Tuesday: Hydroxo-B12 + Phosphatidyl Serine complex: mild nausea, mild brain fog. Added the Folapro at dinner, and the cognitive issues and disorientation increased a bit more.
• Wednesday: Hydroxo-B12 + Intrinsi B-12/Folate: no nausea or ill feeling, very mild increase in brain fog. Then I added Lecithin with phosphatidyl choline and the major brain fog and nausea came back.
• Thursday: Hydroxo-B12 + Intrinsi B-12/Folate only: No nausea or ill feeling, very mild increase in brainfog.
• Friday: Hydroxo-B12 + Folapro: nausea, sense of vertigo, and severe brain fog.

In conclusion, I can tolerate the hydroxo-B12 (both Perque and other brands), and the Intrinsi B-12/Folate tablets with no major issues.

My body had bad reactions to the other three components in the protocol:

• Phosphatidyl Serine complex: major nausea and brain fog (although I do not have reactions to phosphatidyl serine alone; it must be some of the other components in this complex). Even when I replaced it with the lecithin, i got the same results (the Lecithin complex included Phosphatidyl choline, Phosphatidyl Inositol, Phosphatidyl Ethanolamine... same as the Serine complex caps!)
  
• All-in-One multivitamin complex: severe reaction; it contains high levels of folic acid, manganese, and other components I should not be taking.
• Folapro: this one surprised me, because every time I took a 1/4 tablet, the brain fog surged considerably... but not when i took the Intrinsi B-12 Folate complex. Puzzled by it, not sure what to make of it, but I will stay away from it.

So, I will continue taking Hydroxo-B12 and Intrinsi B-12 Folate tablets, but would appreciate any suggestions and recommendations to substitute the three items that were harming me. Thank you.

PS: I just got really bad news from my doctor in regards to a recent test for B-12. I will post about that shortly. Things just keep getting from bad to worse...

 

[Antares in NYC]

OK, so here come more bad news:

My doctor called me with the results of the latest tests. Apparently, after years of testing severely deficient on B-12, I just tested positive for anti-parietal cell antibodies which means possible pernicious anemia.
Awesome.

Just a few questions for the forum before my next doctor visit:

• How do you get pernicious anemia, and anti-parietal antibodies? (I understand this is yet another auto-immune condition)
• Do people with ME/CFS, Lyme or both have a higher tendency to get this condition? If so, how come?
  
• Why does our syndrome depletes us of B-12 and other nutrients so badly? (I'm also deficient on D, C, Magnesium).
• Now what? What am I to expect? Are things going to keep going downhill like this, systemically, organ by organ? I'm just a bit terrified right now.

For the record, since I was finally diagnosed with ME/CFS and my doctors started doing the proper tests, this is all they have unveiled:

• Classic markers for ME/CFS (extremely low NK cell volume and function, high Leptin, high EOS, and others)
• Off the charts titres for EBV, HHV6, cPN, and bartonella.
• Western-Blott positive test for Lyme disease (Igenex)
• Now positive for anti-parietal cell antibodies and pernicious anemia.

Seriously, every few months bring another major issue. Waiting for a silver lining to all this...