[kurtosis]

Correction to my post about my b-vitamin trial. I had actually been taking the b-complex 7 days before I started ALC and for 24 days total. I think that was a bit too long to be taking that much once a night since it seemed I was starting to get odd tiny pain flashes in my joints that I previously didn't have. The past 2 days I stopped taking it and this sensation disappeared but my POIS symptoms still are generally improved.

That's odd. You seem to be well within safe levels of b6. Just check again how much you're taking? Methyl-b12 can cause some nerve tingling but that may not be a bad thing in all circumstances as methylcobalamin / methyl-b12 is often used to treat diabetic neuropathy (nerve damage). It seems that neuropathy itself resembles a tingling sensation (initially) while the repair of nerves that were damaged may also trigger an initial "tingling" sensation.

Here's a paper http://www.sciencedirect.com/science/article/pii/0022510X94902909

Ultra-high dose methylcobalamin promotes nerve regeneration in experimental acrylamide neuropathy. Tetsuya Watanabe, Ryuji Kaji , Nobuyuki Oka, William Bara and Jun Kimura Department of Neurology, Kyoto University Hospital, Shogoin, Sakyoku, Kyoto 606-01, Journal of Neurological Sciences, Vol 122, Issue 2, April 1994, Pages 140–143

And you're also taking ALCAR which seems to also stimulate nerve growth. Did the tingling persist?
I haven't experienced it myself but I did experience a bizarre desire to chew things (pens mostly) when I took some larger doses of methylb12.

[Vincent M]

Interesting. It's possible that the sensation was nerve repair, but since it felt like it would be painful if it intensified I didn't want to risk it. Especially considering I've already gotten an improvement in my symptoms. You're right that I wasn't taking an overdose according to the available data, but I know my body often reacts to substances differently than most. I haven't gotten the sensation today either.

I took 500mg acetyl-L-carnitine this morning and will be taking it morning and night for the next ~ two weeks to see if that was part of my symptom improvement.

I'm used to trying herbs that take effect immediately so I'm still getting used to these longer trials.

[kurtosis]

I measure progress over a longer timeframe now. I don't expect overnight results.

[kurtosis]

http://curezone.com/forums/am.asp?i=1687495 here is an interesting article revealing properties of B3/niacin to fight candida.

Thanks. Interesting link.

[gabin]

Yeap. It's also mentioned that such supplements as olive leaf oil, garlik also contribute to treating candida.
And here is the list of typical candida symptoms:

What are some systemic symptoms of candida overgrowth?

Symptoms that can be caused by yeast (but may also have other causes) are:
• Chronic fatigue, or fatigue in mid-afternoon or after meals
• Food cravings, especially for sweets
• Depression, brain fog, poor concentration, irritability
• Hyperactivity and learning disabilities in children
• Loss of sexual desire, dry vaginal area
• A reaction or aversion to perfumes, dust, cut grass, tobacco smoke
• Allergies or hypersensitivity to foods, chemicals, molds, pollen, perfume, tobacco smoke
• Immune impairment, autoimmune disorders
• Headaches, stiff neck and back, joint pains
• Alternating constipation and diarrhea, or either one
• Bladder infections, vaginitis
• Sunlight sensitivity, light hurts eyes
• An overall feeling of not being well
• Bloat and gas. Yeast produces gas and thus bloat, like the gas bubbles that cause the rising of bread.

[Vincent M]

For anyone who hasn't visited poiscenter lately there has been some good news. There will almost definitely be a research study relatively soon(not sure how soon, but I'm guessing about a year).

It might make it easier for the researchers if we gather more data on our individual locations and abilities to travel. If you haven't yet you can post your country at this thread: http://poiscenter.com/forums/index.php?topic=299.msg3783#msg3783

[Vincent M]

According to Stef, the researcher will be determined around mid-late November this year.

[Vincent M]

Today was my fifth day on acetyl-L-carnitine without b-complex. I had disruptive pain in my knees and eyes for the first time in a while today so I'm going to assume for now that both the vitamins and ALC played a role in my improvement. I'm impatient to move on with trials for some herbs I haven't opened yet, but I'll continue taking ALC once or twice a day and b-complex about 3 times a week.

[romies]

Kurtosis:

First, a big thank-you for figuring out a recipe to cope with POIS. A long-time POIS sufferer here and recently got my 23andme sample sequenced. I am posting it here just for comparison. I tried a modified "Kurtosis recipe" and so far the result suggest my POIS symptoms come from undermethylation, low BH4, and something resolved with daily Ginkgo. There is probably some additional genetic components that we don't know yet, because otherwise 7% of the population should have POIS as well.

Gene & Variation rsID Alleles Result
COMT V158M rs4680 GG -/-
COMT H62H rs4633 CC -/-
COMT P199P rs769224 AG +/-
VDR Bsm rs1544410 CC -/-
VDR Taq rs731236 AA +/+
VDR Fok-I not found n/a n/a
MAO A R297R rs6323 G -
ACAT1-02 rs3741049 GG -/-
MTHFR C677T rs1801133 GG -/-
MTHFR 03 P39P rs2066470 AA +/+
MTHFR A1298C rs1801131 GG +/+
MTR A2756G rs1805087 AA -/-
MTRR A66G rs1801394 AA -/-
MTRR H595Y rs10380 CC -/-
MTRR K350A rs162036 AA -/-
MTRR R415T rs2287780 CT +/-
MTRR S257T not found n/a n/a
MTRR A664A rs1802059 GG -/-
BHMT-01 not found n/a n/a
BHMT-02 rs567754 CT +/-
BHMT-04 rs617219 AC +/-
BHMT-08 rs651852 CT +/-
AHCY-01 rs819147 CT +/-
AHCY-02 rs819134 AG +/-
AHCY-19 rs819171 CT +/-
AHCY-19 rs819171 CT +/-
CBS C699T rs234706 AG +/-
CBS A360A rs1801181 AG +/-
CBS N212N rs2298758 GG -/-
SUOX S370S not found n/a n/a
NOS3 D298E not found n/a n/a
SHMT1 C1420T rs1979277 GG -/-

[romies]

My typical symptoms:

onset: 1-2 hrs after orgasm, typically it takes 4-5 days to resolve. the first 2 days can be paralyzing

Very sleepy during the day, even with 10+ hrs of sleep (I normally sleep 8 hrs)
immediately tired after breakfast.

Cognitative:
very poor working memory

ADHD behavior,
Example:I cannot finish unloading a dish-washer under POIS without switching to something else in the middle of it.

Socially withdrawn
     
Emotional
Negative thoughts, low self-esteem, lots of self-criticism
Very Irritable

Low physical energy
max weight reduced by 40-50% in weight training
headache during physical exertion (e.g. running)

Blurred vision

Mild-Flu-like symptoms
     sore throat
     sneezing
     cough

[romies]

My current daily supplement routine.
upon wake-up: Now-brand NADH 10mg (rocket fuel indeed). no eating for 25-30 mins.
after breakfast: Fish oil, Ginkgo 120mg, Vitamine D 2000IU, Methyl-Guardx1 capsule
            Wellbutrin 100mg SR (being taking this for a year before I discovered the POIS thread)
after lunch: Ginkgo 60mg, Vitamin C, Multi-vitamin
before sleep: Now-brand Arginine+Ornithine 500/250mg x 2 (to reduce ammonia)
                  Loratadine 10mg, ZMA(1 capsule only: 10mg zinc, 5mg Pryidoxine HCL, 150mg Mg), p5p 50mg.

additional Ginkgo, VC and 1 Methyl-Guard after orgasm

I would say this routine eliminated 90% of the cognitive symptoms.

[kurtosis]

My current daily supplement routine.
upon wake-up: Now-brand NADH 10mg (rocket fuel indeed). no eating for 25-30 mins.
after breakfast: Fish oil, Ginkgo 120mg, Vitamine D 2000IU, Methyl-Guardx1 capsule
            Wellbutrin 100mg SR (being taking this for a year before I discovered the POIS thread)
after lunch: Ginkgo 60mg, Vitamin C, Multi-vitamin
before sleep: Now-brand Arginine+Ornithine 500/250mg x 2 (to reduce ammonia)
                  Loratadine 10mg, ZMA(1 capsule only: 10mg zinc, 5mg Pryidoxine HCL, 150mg Mg), p5p 50mg.

additional Ginkgo, VC and 1 Methyl-Guard after orgasm

I would say this routine eliminated 90% of the cognitive symptoms.

Wow. good to know that other people are getting the same relief.
You have symptoms which are quite similar to mine and you seem to be taking similar supplements. I actually simplified my routine a lot which now consists of
- a fish oil with olive oil and lemon oil. This has none of the rancid taste of some fish oils.
- a multivitamin with active b vitamins, coq10 and other antioxidants. I get about 400 mcg of methylfolate / day and about 500mcg of both adenosylcobalamin and methylcobalamin.
(as I've posted before, I have a theory that methylation defects can cause inflammatory disease and active b vitamins particularly folate and b12 can help reduce or reverse these symptoms)
- blueberry extract with pterostilbene. Sometimes I actually just eat blueberries (old fashioned) but they appear to help reduce cognitive symptoms. I couldn't tell you whether it's the methylated b vitamins, the anthocyanins or the pterstilbene in blueberries that works. Maybe it's all these but blueberries definitely seem to help.

I'm reaching for the NADH less these days but, yes, I found it useful in reducing fatigue.

I believe the improvement we're noticing from NADH is increased energy and increased glutathione production. I also worry about fluctuating homocysteine levels that may contribute to the dull headache that some of us get. Just some thoughts. I realise that none of this is conclusive.

[gondal4]

what is test name for gene thing?

[romies]

Wow. good to know that other people are getting the same relief.
You have symptoms which are quite similar to mine and you seem to be taking similar supplements. I actually simplified my routine a lot which now consists of
- a fish oil with olive oil and lemon oil. This has none of the rancid taste of some fish oils.
- a multivitamin with active b vitamins, coq10 and other antioxidants. I get about 400 mcg of methylfolate / day and about 500mcg of both adenosylcobalamin and methylcobalamin.
(as I've posted before, I have a theory that methylation defects can cause inflammatory disease and active b vitamins particularly folate and b12 can help reduce or reverse these symptoms)
- blueberry extract with pterostilbene. Sometimes I actually just eat blueberries (old fashioned) but they appear to help reduce cognitive symptoms. I couldn't tell you whether it's the methylated b vitamins, the anthocyanins or the pterstilbene in blueberries that works. Maybe it's all these but blueberries definitely seem to help.

I'm reaching for the NADH less these days but, yes, I found it useful in reducing fatigue.

I believe the improvement we're noticing from NADH is increased energy and increased glutathione production. I also worry about fluctuating homocysteine levels that may contribute to the dull headache that some of us get. Just some thoughts. I realise that none of this is conclusive.

It took me 2 whole days to read and understand all your posts here and at poiscenter to get the complete Kurtosis recipe (or the evolution of it).

Is the multivitamin you are taking now Thorn Extra Nutrients? I am not entirely sure how it compares with Methyl-guard, because it has 30mg Niacin per 500mcg Methyltetrahydrofolate and 225mcg Methylcobalamin. + 130mg of Niacinamide.
It seems that Niacin and Niacinamide are both methyl-acceptors that could negate the effect of methylfolate.

What's your thoughts? Thanks!

Also, you are not taking Ginkgo or VC any more?

[romies]

what is test name for gene thing?

It's done through 23andme.com
~$108 in the US and it takes 4-6 weeks to get the results.

[romies]

I'm reaching for the NADH less these days but, yes, I found it useful in reducing fatigue.

I believe the improvement we're noticing from NADH is increased energy and increased glutathione production. I also worry about fluctuating homocysteine levels that may contribute to the dull headache that some of us get. Just some thoughts. I realise that none of this is conclusive.

I notice that you are 1298C +/- and I am 1298C+/+. my current understanding is that 1298C+ leads to low BH4, which in turn reduces L-DOPA and 5-HTP production in the brain. NADH recycles BH2->BH4, thereby increasing DA, 5-HT, NE and E levels..

You think glutathion pathway is more influential?

BTW fluctuating homocysteine levels is induced by NADH intake?

Thanks again!

[kurtosis]

I'm reaching for the NADH less these days but, yes, I found it useful in reducing fatigue.

I believe the improvement we're noticing from NADH is increased energy and increased glutathione production. I also worry about fluctuating homocysteine levels that may contribute to the dull headache that some of us get. Just some thoughts. I realise that none of this is conclusive.

I notice that you are 1298C +/- and I am 1298C+/+. my current understanding is that 1298C+ leads to low BH4, which in turn reduces L-DOPA and 5-HTP production in the brain. NADH recycles BH2->BH4, thereby increasing DA, 5-HT, NE and E levels..

You think glutathion pathway is more influential?

BTW fluctuating homocysteine levels is induced by NADH intake?

Thanks again!

Nope, not saying that NADH intake causes fluctuating homocysteine levels.
I know NADH can be used to recycle bh4 and reduce ammonia levels. Another possibility is synthetic BH4. I think there's a product called Kuvan but I have not tried it. It's prescription only so, as usual, discuss it with your doctor.

We both have CBS mutations.
However, I think that some of our illness (and this may not apply to other POIS sufferers, just those that have A1298c and/or MTHFR C677T mutations) may be caused by low levels of glutathione.
My skin and stomach problems improve very quickly when I add supplementary glutathione. I just don't think I'm making enough of this normally and need a helping hand.

[gondal4]

any one else here has problem with running,playing sports?? any idea why iam having this problem since begiinnig of POIS,any linkages?

[Vincent M]

gondal, did you read my post in which I said that fenugreek+tea or nutmeg help my joint pain? I suspect my joint pain is caused by inflammation from POIS. Although it could also be caused by anything that POIS does to inhibit tissue growth and repair.

[Nightingale]

Wow, romies, congratulations on finding something that works for you!  Must be a big relief.  I'm still searching for my own solution, because it turns out I don't respond to the same treatments you and kurtosis have had success with.  I think my issue is that I am over-methylated, and combined with COMT and MAO-A mutations I quickly experience negative effects from methionine and other methyl donors.  I suffer from psychosis unless I'm taking dopamine-blocking drugs, and I have terrible reactions to some meds that block the reuptake of dopamine or norepinephrine (Wellbutrin).

My Genetic Genie results:



I have 3 homozygous mutations on my AHCY gene.  From my understanding this would increase methylation.  What's confusing is I also have 3 homozygous mutations on my BHMT gene, which would reduce the conversion of homocystine to methionine, a decrease in methylation.  I'm pretty sure that's right, correct me if I'm wrong!  The CBS mutation should also decrease methylation, so I'm guessing that homocystine levels are not indicative of very much for me.  My last check was very normal.  Is the methylation problem (be it over or under) resulting in a normal homocystine level by having mutations that both increase and decrease methylation?

I'm curious if I would respond to treatment that people with hypermethionemia have.  http://wiki.medpedia.com/Hypermethioninemia

I don't know exactly what that treatment is though, I havn't found a good resource on that.

Besides the BH4/mast cell connection, I still have no idea how this would cause increased symptoms after orgasm!