The Naked Scientists

The Naked Scientists Forum

Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6455304 times)

Offline Vincent M

  • Sr. Member
  • ****
  • Posts: 285
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17750 on: 16/02/2013 05:04:47 »
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.
 

Offline romies

  • Jr. Member
  • **
  • Posts: 35
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17751 on: 18/02/2013 03:06:03 »
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 -/-


 

Offline romies

  • Jr. Member
  • **
  • Posts: 35
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17752 on: 18/02/2013 03:12:40 »
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
 

Offline romies

  • Jr. Member
  • **
  • Posts: 35
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17753 on: 18/02/2013 03:21:33 »
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.
 

Offline kurtosis

  • Sr. Member
  • ****
  • Posts: 360
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17754 on: 18/02/2013 12:18:04 »
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.
 

Offline gondal4

  • Full Member
  • ***
  • Posts: 68
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17755 on: 18/02/2013 12:31:15 »
what is test name for gene thing?
 

Offline romies

  • Jr. Member
  • **
  • Posts: 35
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17756 on: 18/02/2013 13:25:43 »
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?
 

Offline romies

  • Jr. Member
  • **
  • Posts: 35
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17757 on: 18/02/2013 13:33:40 »
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.
 

Offline romies

  • Jr. Member
  • **
  • Posts: 35
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17758 on: 18/02/2013 13:39:32 »
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!
 

Offline kurtosis

  • Sr. Member
  • ****
  • Posts: 360
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17759 on: 18/02/2013 14:58:30 »
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.
 

Offline gondal4

  • Full Member
  • ***
  • Posts: 68
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17760 on: 19/02/2013 16:04:35 »
any one else here has problem with running,playing sports?? any idea why iam having this problem since begiinnig of POIS,any linkages?
 

Offline Vincent M

  • Sr. Member
  • ****
  • Posts: 285
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17761 on: 19/02/2013 17:13:12 »
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.
 

Offline Nightingale

  • Full Member
  • ***
  • Posts: 92
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17762 on: 20/02/2013 01:55:21 »
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!
 

Offline gondal4

  • Full Member
  • ***
  • Posts: 68
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17763 on: 20/02/2013 07:32:01 »
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.
nO fenugreek tea didnt had any effect on me.......And iam talking not about joint pain only but generraly i feel older and cannot or play sports.it is since beginning of POIS when iwas 18,now iam 25..
 

Offline Vincent M

  • Sr. Member
  • ****
  • Posts: 285
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17764 on: 20/02/2013 12:15:48 »
gondal, I feel increased endurance(less fatigue) during exercise or sports the day after I take niacin if I take it and have a flush before an "o". The flush is a slight redness of the skin with a hot, itchy feeling. Safest to start with 50mg nicotinic acid which is the form of niacin you would want. If 50mg doesn't cause a flush I would bump it up to 100mg, and so on. I need about 500mg because my bottle of niacin is old and I didn't seal it properly so it lost potency quickly.
« Last Edit: 20/02/2013 12:17:49 by Vincent M »
 

Offline gondal4

  • Full Member
  • ***
  • Posts: 68
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17765 on: 20/02/2013 12:30:21 »
what i meant was i cannot run and feel older and i have symptoms too like wrinkles on hand and feet,eye sight weakness,memory,etc.....and these all symptoms started at the time when POIS started? so i was asking is there a connection? and im talking generally about running,playing sports not in the days after POIS because i cannot move after O.
 

Offline Vincent M

  • Sr. Member
  • ****
  • Posts: 285
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17766 on: 20/02/2013 13:14:17 »
Found this about hypermethioninemia:

"Treatment of CBS deficiency usually begins with a trial of oral vitamin B6 (pyridoxine) supplementation, with daily measurement of plasma amino acids. CBS requires pyridoxine as a coenzyme for enzymatic activity. Overall, about 25% of patients respond to large doses of pyridoxine, although the percentage may be lower for patients identified through newborn screening. This pyridoxine response usually coincides with the presence of some residual enzyme activity. Dietary restriction of Methionine in conjunction with Cystine supplementation reverses the biochemical abnormalities to some extent and appears to reduce the clinical symptoms. Special formulas are available commercially, but the diet is difficult to maintain long term. In an attempt to decrease Homocysteine levels, folic acid, and betaine can be supplemented to induce recycling of this amino acid to Methionine for alternate metabolism. Vitamin B12 (cobalamin) may also be helpful.
Because the diagnosis and therapy of Homocystinuria is complex, the pediatrician is advised to manage the patient in close collaboration with a consulting pediatric metabolic disease specialist. It is recommended that parents travel with a letter of treatment guidelines from the patient’s physician."
http://www.perkinelmergenetics.com/Hypermethioninemia.htm

I wonder if this is why B-complex improves my symptoms, but methionine seems to make me slightly worse.
 

Offline kurtosis

  • Sr. Member
  • ****
  • Posts: 360
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17767 on: 20/02/2013 13:32:16 »
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!

Quote
The AHCY gene provides instructions for producing the enzyme S-adenosylhomocysteine hydrolase. This enzyme converts the AdoHcy into the compound homocysteine.
But methionine is methylated homocysteine. I'm not sure it's as simple as saying that ACHY mutations will automatically increase methylation. SAM-e is the main methyl donor, not methionine. If you're body can't produce SAM-e from methionine then it may build up methionine and you may start to smell funny but you also won't have enough SAM-e and will have a range of symptoms from that including difficulty thinking, healing etc.

If you look at the heartfixer website then your genetics would indicate the following:

VDR (+/+) and COMT (+/-)
Quote
COMT (+/-) and VDR (+/+) behaves like COMT (-/-)
Therefore
Quote
Lowest dopamine levels
Poor tolerance to toxins and microbes
Needs and tolerates dopamine precursors and methyl donors
Lowest susceptibility to mood swings

MAO A you know about.

Quote
Monoamine Oxidase A breaks down serotonin, a neurotransmitter that is generated from the dietary amino acid tryptophan, in a BH4 requiring reaction.  Many anti-depressant drugs, including the SSRIs (Serotonin Selective Reuptake Inhibitors) work by blocking the breakdown of serotonin.  Defects in serotonin metabolism have been associated with mood and neurological disorders.  How best to address the MAO A R297R abnormality is not clear to me.  As serotonin metabolism is adversely affected, individuals with the R297R defect should avoid large doses of high tryptophan foods (see appendix).  High doses of St. John’s Wort, often taken to address depression, could lead to mood swings as serotonin levels fluctuate.

BHMT
Quote
Phosphatidylcholine, or as a less expensive alternative, Phosphatidylserine 100 mg daily, to stimulate the BHMT reaction
Betaine or TMG is also possible in those without COMT (+/+)

On to AHCY
Quote
S-Adenosyl Methionine (SAMe), the key methyl donor generated from methionine, is metabolized in to S-Adenosyl Methionine, and then on to homocysteine by AHCY.  Individuals (+) for both AHCY and CBS often have low baseline urine sulfate levels, which then rise and fall  in response to treatment.  Early on the levels rise, as the “bottle neck” abnormal AHCY enzyme has been “limiting the supply” of homocysteine.

There are reports on phoenixrising.me of people with COMT (-/-) and AHCY taking SAMe with some success. The CBS mutation tends to shove the outputs towards ammonia which requires BH4 to clear. You've already sent me some material on this. There's synthetic BH4, supplements which may increase the creation of BH4 and NADH which may increase BH2-BH4 recycling.

MTRR and MTHFR A1298c indicate a need for methyl-b12
Quote
MTRR generates the methyl-B12 needed by MTR and many other methyl-B12 requiring enzymes.  Blood B-12 levels may be normal, but if MTRR is (+/+) or (+/-), methyl-B12 formation will be compromised, homocysteine levels will be elevated, methylation in general will be compromised, and your physiology will be compromised.   
 

Offline kurtosis

  • Sr. Member
  • ****
  • Posts: 360
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17768 on: 20/02/2013 13:42:51 »
Found this about hypermethioninemia:

"Treatment of CBS deficiency usually begins with a trial of oral vitamin B6 (pyridoxine) supplementation, with daily measurement of plasma amino acids. CBS requires pyridoxine as a coenzyme for enzymatic activity. Overall, about 25% of patients respond to large doses of pyridoxine, although the percentage may be lower for patients identified through newborn screening. This pyridoxine response usually coincides with the presence of some residual enzyme activity. Dietary restriction of Methionine in conjunction with Cystine supplementation reverses the biochemical abnormalities to some extent and appears to reduce the clinical symptoms. Special formulas are available commercially, but the diet is difficult to maintain long term. In an attempt to decrease Homocysteine levels, folic acid, and betaine can be supplemented to induce recycling of this amino acid to Methionine for alternate metabolism. Vitamin B12 (cobalamin) may also be helpful.
Because the diagnosis and therapy of Homocystinuria is complex, the pediatrician is advised to manage the patient in close collaboration with a consulting pediatric metabolic disease specialist. It is recommended that parents travel with a letter of treatment guidelines from the patient’s physician."
http://www.perkinelmergenetics.com/Hypermethioninemia.htm

I wonder if this is why B-complex improves my symptoms, but methionine seems to make me slightly worse.

I improve with methylfolate and methyl-b12. I get worse with over 25mg of pyroxidine / day. I don't like folic or even folinic acid. NADH makes me feel good and I think this is because it increases BH4. I feel much happier when I get only the methylfolate form of folate in my multi-vitamin and methyl b12 every day. I've learned these from trial and error. A week or so at a time and plotting general happiness and cognitive performance results.

I also take molybdenum and manganese in my multivitamin as I have all the signs of the SUOX mutation. Just the smell of red wine or perfume make me feel nauseous. 
 

Offline Nightingale

  • Full Member
  • ***
  • Posts: 92
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17769 on: 20/02/2013 19:45:42 »
Thanks for your analysis, kurtosis.  I with I had known about the heartfixer website sooner, it's really where I should have started when I began my path to understanding all this.

"Understanding how to incorporate the science of Methyl Cycle Genomics in to your treatment program, and how best to monitor your individual response, will be a challenge to both of us.  If we accept this challenge, and spend time, energy, and resources in dealing with your Methyl Cycle Abnormalities, then you can take strides forward in improving your health."

That's pretty much where I'm at.  There is a lot to learn, and I need to understand why I'm taking a particular supplement because 1) I have health care providers whose trust I need and 2) I don't want to know I unwittingly made things worse for myself.

My head is fogged and my motivation is low.  But I will be chipping away at this stupid methylation cycle until I get it...
 

Offline romies

  • Jr. Member
  • **
  • Posts: 35
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17770 on: 21/02/2013 05:29:12 »
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 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.

good points about CBS mutations. and I remember your earlier Histamine analysis, which is brilliant.

I used to need to take daily omeprazole to deal with night-time heart burn, and daily Cetirizine for stuffy nose during sleep. I was dependent on both for ~8 years (unable to quit, because of severe symptoms ensued). Clearly having too much histamine in my system.

After starting on Methyl-guard, in a few days, I don't need either omeprazole or Cetirizine. I am taking loratadine for my allergy now. Previously loratadine was way too weak to alleviate my nasal blockage at night.

One question here: CBS mutation will up-regulate homocysteine metabolism and generate too much glutathione, according to Amy Yasko?
 

Offline romies

  • Jr. Member
  • **
  • Posts: 35
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17771 on: 21/02/2013 05:39:09 »
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 [nofollow]

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!

Nightingale,

I am not completely out of the woods yet.. The recipe is quite complex, so if I forget one or two ingredient, I sometimes still get some POIS symptoms, but for 12-18 hrs only, as opposed to 4-5 days before.

Your COMT, VDR and MAO A profile is almost completely opposite from mine. so I guess your are more of the over-methylation type. Maybe taking Niacin before and after an O will help to mop up extra methyl and lessen the crash?

I do think there are several sub-types of POIS. maybe there is a over-methylation type, where too much dopamine was generated. Dopamine response curve is U-shaped. too much DA does degrade cognitive and may also causes dopamine receptor to down-regulate, and causes a hang-over for 4-5 days after..

 

Offline kurtosis

  • Sr. Member
  • ****
  • Posts: 360
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17772 on: 21/02/2013 10:12:26 »
I have the C699T up-regulation. I read Yasko's "Genetic Bypass" book and while I'm not 100% convinced that anybody knows
1) the exact interaction between all these genes
2) that other genes are not involved that may complicate these interactions further.
I think that the methylation pathyway diagrams make a lot of sense and seem somewhat, if not entirely, complete.
Here's her quote on C699T from (page 48)
Quote
"Increased CBS enzyme activity would act to convert homocysteine more efficiently to cysteine, thereby lowering homocysteine levels. Ultimately individuals with the CBS C699T upregulation of the CBS enzyme can generate more sulfur breakdown products with potential sulfur toxicity issues, enhanced ammonia production, and a lack of glutathione."
Yasko believes that ammonia and taurine are elevated in CBS up-regulations and that glutathione is decreased.
Ammonia buildup is bad and the best way to clear it is with BH4, which can be recycled using NADH. NADH has also been shown to increase glutathione in one study I read.
See
Quote
Freedenfeld s. [et al.], Biochemical effects of Ribose and nADH Therapy in children with Autism, 2011
I don't think there are enough studies to decide it's conclusive  ;) but it's worth thinking about.
 

Offline romies

  • Jr. Member
  • **
  • Posts: 35
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17773 on: 21/02/2013 14:59:25 »
I have the C699T up-regulation. I read Yasko's "Genetic Bypass" book and while I'm not 100% convinced that anybody knows
1) the exact interaction between all these genes
2) that other genes are not involved that may complicate these interactions further.
I think that the methylation pathyway diagrams make a lot of sense and seem somewhat, if not entirely, complete.
Here's her quote on C699T from (page 48)
Quote
"Increased CBS enzyme activity would act to convert homocysteine more efficiently to cysteine, thereby lowering homocysteine levels. Ultimately individuals with the CBS C699T upregulation of the CBS enzyme can generate more sulfur breakdown products with potential sulfur toxicity issues, enhanced ammonia production, and a lack of glutathione."
Yasko believes that ammonia and taurine are elevated in CBS up-regulations and that glutathione is decreased.
Ammonia buildup is bad and the best way to clear it is with BH4, which can be recycled using NADH. NADH has also been shown to increase glutathione in one study I read.
See
Quote
Freedenfeld s. [et al.], Biochemical effects of Ribose and nADH Therapy in children with Autism, 2011
I don't think there are enough studies to decide it's conclusive  ;) but it's worth thinking about.

Very interesting. I hope the biomedical people can be more quantitative about the details of these pathways. I am an electrical engineer, and I see all these processes basically as systems of rate equations, which probably can be simplified into constant-coefficient ordinary differential equations (not even PDE). And our genetic profile ( and the regulation of our gene expression) determines these coefficients. Supplements are forcing functions. If these coefficients are known, one can solve for an optimal supplement regiment in MATLAB in second. :)

And blood testing may help in determine some of the constants in the equations...

I admit my thinking is probably too mechanistic for biologic systems....

 

Offline kurtosis

  • Sr. Member
  • ****
  • Posts: 360
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17774 on: 21/02/2013 15:23:27 »
Well, octave was developed so chemical engineering students would have a free version of MATLAB to solve exactly these kinds of equations. However,there are feedback loops as CBS takes from homocysteine which reduces the amount for remethylation to methionine which further slows the methylation cycle. That's why understanding the methylation cycle perfectly can help give an optimal supplementation path.
Ideally, that's what nutrigenomics should do. A combination of functional testing and genetic testing should lead to an optimisation problem such that over time the supplementation produces metabolic equilibrium with normal (or indeed optimum) levels of certain enzymes and their co-factors in serum and tissue.

CBS up-regulation may produce downstream byproducts of CBS at 10 times the rate so that's a lot more ammonia being built up. 10 times more? That's not clear as there are other mutations and a split between sulfur byproducts such as ammonia and taurine . To clear ammonia requires more BH4 to recycle BH2. But supplements don't appear to be absorbed uniformly and it seems that it's a bit early to say we can fix these problems in a MATLAB simulation in a flash. In theory, yes but in practice medical researchers are in the early stage of understanding the efficiency implications of any genetic mutation, never mind combinations.

So there's a lot of intelligence and research which would go into writing the ODE's you speak of and
1) they may be a best guess approximation for what's actually happening.
2) because of reasons including (1) they'd still require functional testing to determine they were working. It'll still be iterative ...
 

The Naked Scientists Forum

Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #17774 on: 21/02/2013 15:23:27 »

 

SMF 2.0.10 | SMF © 2015, Simple Machines
SMFAds for Free Forums