Author Topic: New here  (Read 4886 times)

Vordhosbn

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New here
« on: October 31, 2012, 05:47:52 PM »
I found the link to this forum on the Naked Scientists thread. I just figured I would introduce myself in case it is helpful at all.

One thing I would like to point out is that my symptoms make it stressful for me to interact comfortably with others, even online. I'm somewhere between shyness and utter exhaustion. I try to avoid posting messages, and sometimes disappear or go quiet for long periods. It's weird, but that is how things are for me! ;D



So here is a quick background to my case. I currently exist under the label of 'chronic fatigue syndrome' as an explanation to others for my situation. My symptoms do seem to extend beyong just POIS, but I am compelled to post today while my back is still aching.

I'm 23, male. A sickly child; anaemic infant then undiagnosed coeliac into my early teens. Fell into the psychiatry trap very early, on ever increasing doses of various antidepressants from 8 to 16, ended of my own volition. (I no longer accept the concept of mind-body duality and am all the better for it.) Was first put on the ADs for stomach aches, but soon started losing interest in activities and experiencing significant mood problems. I may have always suffered from orgasmic illness, but after switching to Effexor at 14 the symptoms became quite powerful and at one point I collapsed in the shower and hit my head resulting in some kind of seizure/blackout.

For as many years now as I can remember I have suffered from knee aching, lower back pain and testicular pain after orgasm. I am generally always in a fog, but it noticibly increases alongside these.

I have spent a fortune on testing of hormones and such. Notable results off the top of my head are very low salivary cortisol, borderline hypogonadism (11nmol at lowest reading), high reverse T3, high acetaldehyde and an unidentified stool parasite.



Most helpful treatments for my overall condition have been iodine (Stopped working after I stopped it to get thyroid tested) and testosterone (Too expensive, doctors). 'Methylation' supplements (Methylcobalamin and methylfolate; folinic and folic acid made things much worse) helped somewhat, though were inconvenient and expensive since anything less than 3mg of each exacerbated things - not to mention nearly causing myself subacute combined degeneration when I took more folate than B12

I am currently experimenting with low, frequent dose riboflavin and manganese though not to any spectacular result. I have also found high dose menatetranone (Vitamin K2), ie 15mg, seems to keep oestrogen at bay; based on the idea that the body increases oestrogen to protect the bones from low calcium/K2/???.


I hope this thread isn't out of place here; I'm rushing slightly.

Vordhosbn

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Re: New here
« Reply #1 on: October 31, 2012, 06:14:21 PM »
The main reason for posting was just to share with you what I am currently thinking about. Perhaps somoene here could do a better job exploring and explaining anything that is new or useful.

I have looked into 'chronic pelivc pain syndrome' (CPPS), 'trigger point' massage and posture encouraging an anteverted pelvis. Here is an explanation from someone else as to the effects of CPPS:
Quote
In this nutcracker syndrome, the vein draining the left kidney is in a poor anatomical position and gets compressed by surrounding arteries. This leads the blood in the left kidney vein to back up. Since the vein coming from the left testicle dumps into the left kidney vein, the left testicle vein also backs up (thus varicocele). The veins of the left and right testicles are connected to each other by smaller veins, so this venous back up is transmitted to the right testicle as well (thus varicocele on the right, but less common than on the left). Since blood can't drain from the testicles, three things happen.

First, fresh arterial blood stops flowing in, and the testicles are subjected to a poor oxygen/nutritional supply. This leads to atrophy, infertility, and low testosterone. I speculate that this altered hormonal balance can lead to autoimmune disease, suppressed thyroid, etc.

Second, the blood draining from the testicles has to go somewhere. The testicular veins are also connected to the prostate, so blood from the testicles flows in the wrong direction, into the prostate. The testicles produce testosterone - normally, that testosterone gets diluted as it travels through the body before it reaches the prostate. But now, the testosterone has direct access to the prostate - the prostate is exposed to blood straight from the testicles, that is filled with undiluted testosterone. The prostate swells up because of the high vein pressure it experiences (prostate enlargement), it converts this relatively large concentration of testosterone to DHT (thus MPB), and it grows larger under the influence of these androgens (more prostate enlargement). If this continues, you get BPH, difficulty with urination, etc. If it continues further, you get prostate cancer.

Third, all this backed up blood causes the other veins in the pelvis to get bigger. These enlarged veins can push against and squeeze the veins draining the legs, leading to varicose veins in the legs.

This is a pretty awesome theory that explains a lot of things about varicoceles, infertility, prostate cancer/problems, and varicose veins.

These guys at the hardflaccid forums have a strange form of erectile dysfunction that looks like some kind of injury, but apparently can be fixed by stretching, trigger point release of the muscles, fixing posture, etc. They seem to think that many of these other problems can also be fixed. The guy who started that forum thinks that the root cause of these muscular imbalances is anxiety/stress.

If all this is correct, it really shows how stress and muscular imbalances can have unexpected consequences.
A good resource for CPPS was the Hardflaccid.org forum. I would agree with the above if the definition of "stress" includes chronic infection and drugs that affect the HPA axis. I also question the typical CPPS treatment of discouraging an anteverted pelvis; Esther Gokhale and others that focus on historical posture interest me here.



Since my Metametrix DNA stool test showed an unknown parasite I have looked into this as well. There is a forum, pptu.lefora.com, that is dedicated to this situation. There is a subforum there about a parasitologist called Kevin Cahill in New York; he is the only doctor in the world practicing immediate microscopy of mucus and stool(?) samples without the need for fixatives and postage. Cahill apparently states many parasites die too quickly or are killed by the fixatives involved in mainstream stool testing. The DNA PCR used in Metametrix is supposed to be quite inaccurate so the sigmoid mucus sample is considered ideal.

Chronic parasitic infection and immune response could explain some cases of disordered cortisol and cascading hormone dysfunction. Also how other problems like gut dysbiosis and candida are able to take hold. I am losing weight at an alarming rate now that I am getting more physical activity. I'm also developing severe 'sensitivities' to foods on a regular basis and am on a restricted non-starch diet.



There is an interesting theory regarding riboflavin that popped up on a chronic fatigue forum I read. It is covered in these two threads amidst all the drama:
http://forums.phoenixrising.me/index.php?threads/hair-mineral-testing.15099/
http://forums.phoenixrising.me/index.php?threads/b2-i-love-you.15209/

Roughly the suggestion is that B2 is used in a great many reactions throughout the body yet has limited absorption, thus possibly becoming depleted. The person that proposed this theory found manganese was another fundamental cofactor. I wonder if iodine would work better once these two are fixed.

Also on the Phoenix Rising forum is the discussion of 'methylation' treatments, notably the poster Freddd who found that folate forms other than methylfolate exacerbated his symptoms greatly. I have found the same results; hydroxo and methyl B12 made me feel extremely ill until I added sufficient methylfolate. When I didn't take enough B12 with the methylfolate however I experienced spinal inflammation and feared subacute combined degeneration, so it is important to have both on hand.



The other thing I have found is that for 16 years in my room there was exposed lead where my window wasn't properly sealed. So perhaps I had a constant spray of lead dust over me, not to mention fiddling with it. I trust Andrew Cutler as my source for all things heavy metal... Though DMSA flares up my yeast symptoms to worrying levels.



Also quickly I read about brain infections on Paul Jaminet's diet blog. head injuries can break the blood brain barrier. Alongside POIS i experience sleep apnoea, possibly an infection of the brain stem. Can't elaborate though my laptop's battery is about to die!

Not sure why I felt compelled to share this, but there it is. :-\
« Last Edit: October 31, 2012, 06:17:54 PM by Vordhosbn »

demografx

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Re: New here
« Reply #2 on: October 31, 2012, 06:20:58 PM »
Welcome to The POIS Forum!

Please see our welcome message, which contains many info resources for your use:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business