JN's story -- former 2001 Yahoo Group Member

Thanks for that Texas. I picked up some interesting info in that thread. :bulb:

JN, others - Is this the proper test for Pyroluria?

questdiagnostics.com/hcp/testmenu/jsp/showTestMenu.jsp?fn=437.html&labCode=WDL

Yes Horndog, it is.

To update;

I peaked a month ago, and have deteriorated since. The only thing I am on is the nutritional supplement for pyroluria containing 75mg zinc, Vit C, Vit B6, Vit E and biotin. (canā€™t remember doses of the Vitamins).

Specifically I deteriorated as follows:

  • My sleep worsened significantly. Very difficult to get to sleep, stay asleep. I woke up easily. I have NEVER had problems sleeping.
  • Libido worsened. No nocturnal erections. No ED tho.
  • Tired in the evening more than normal
  • A significant depression came over me, like being under a black cloud.
  • my musculature worsened

I could only blame the nutritional supplement. I had a blood test 6 days ago which showed:

  • low copper (I think my value was 0.1 where range is 0.2 to 0.4.
  • normal zinc (still not optimal (!!) despite supplementation
  • Testosterone 12 range 10 to 40 and low free T 145 on range 200 to 700 (roughly)
  • high SHBG 77 (I think upper limit is 70)
  • low E2 42 range (55 to 150)

still waiting for histamine level.

I stopped the pyroluria supplement 4 days ago and the above symptoms reversed almost immediately, much to my relief. Thanks to my resourcefulness, I checked in with Greg Emerson yesterday. He gave me the above results, casually stated that getting better ā€˜isnā€™t a straight lineā€™ and put me on high dose copper, and added 4mg of copper to my nutritional supplement and raised the zinc to 90mg.

My reading tells me that zinc lowers copper. So does Vit C. And boy, are these heavy metals potent?! If any of you guys havenā€™t got a thorough copper and zinc analysis done, please do!! I mean, Iā€™ve read a couple of testimonies of chaps who have had abnormal copper levels (high or low) and I fobbed them off. Having just experienced the last month of low copper, MAN ALIVE, that was horrible!! Literally 4 days off the supplement, I am feeling pretty good! Just went for a surf this morning, and am sitting in the park in the sun. Had my first good night sleep for a month or so last night, so I reckon my copper has bounced back to normal somewhat.

Gregā€™s not concerned about my low T level. Nor am I. Since stopping T injections at end of June, my T has bumped around the bottom of the range, but Iā€™m doing great at tennis, have a six pack and very little fat on me. In fact, my copper experience worsened my musculature in the last month, rather than the T level (which has been low since June!). I feel good again, and Iā€™m going to get even better. I guess weā€™re fine tuning now, and there could be a few nasty bumps coming up, but ā€˜two steps forward and one step backā€™ will have to do! Iā€™m expecting my lifestyle of good sleep, fantastic nutrition, surfing, sunshine and exercise to raise my T level over time. My take on all this is that if one sorts out the basics, the body will repair itself.

I guess my other point is this; any of you guys want to laugh at me encouraging you to get your copper tested? Wanna call me deluded or flick my 18 points off as being ā€˜quackeryā€™ or ā€˜bullshitā€™. Be my guest.

I got stuff to do on this beautiful day in Australia, will update in a few months, and unless Iā€™m dead, Iā€™ll be very surprised if Iā€™m not totally better.

JN

JN
Currently I have no strong study to back my claim, only observations.
you will see at the end we will find it to be Auto immune disorder. Our body is making anti bodies which are causing consistant inflammation and low T. what kind of anti bodies and what they are attacking it (DHT,testosterone or sperms) we have to find it.
I am positive about it. We have got into the same situation as rheumatoid arthritis.
To test my theory, some folk got remession after using Dexamethosone, after suppressing their immune system.

Youā€™re full of shit striken. Now youā€™re really talking out of your ass.
The reason chaps feel better on dexamethasone is itā€™s corticosteroid activity. As adrenal fatigue (low corticosteroid activity) plays a part in virtually ALL of our suffering, replacement of such will relieve symptoms.

Iā€™ve started up on the zinc 90mg/copper 4mg nutritional supplement. Wow, feeling much better after 3 days or so, erections and allā€¦

Watch this space.

JN

I am hoping to see Dr Emerson and have spoken to JN.

BTW, i have grown (significant) muscles on HRT and my erections are fine. However, HRT has not abated my mental fog which is significant (IQ 140+ to barely functional). JNā€™s symptoms are different to mine but many of our blood work was in the past similar (adrenal, rt3, HPTA issues).

Suffering for 6 years, i have had no near recoveries - brain fog and headaches totally unrelenting, although energy level has varied and continues to vary. I donā€™t think iā€™m at all susceptible to placebo effects.

JN, sorry to hear about your downturn. Itā€™s amazing that you have six pack abs after this ordeal.

Iā€™m still a bit confused at your current sexual state, could you please help us out to understand where your sexual abilities stand and how your treatment has improved them, specifically by quantifying your experience in the categories below?

So you understand where Iā€™m coming from, I was positive in all of these categories prior to taking finasteride and since I am markedly worse in every category. How is it for you now?

  1. get an erection immediately
  2. have multiple sexual activities daily to multiple orgasms
  3. getting spontaneous erections often
  4. having daily morning erections
  5. have multiple orgasms/ejaculations in a row
  6. have as strong, satisfying feeling with orgasm
  7. gain and maintain erections in any position
  8. shoot ejaculate for a distance rather than dribble it
  9. have a pressing libido urges through the day to have sexual activity through completion
  10. have full hard erection size every time and no problems with over-shrinkage after orgasm

we all are full of shit, hence the reason for being here.
you can debat on the effects of DM but inflammation / auto immune disorder or anti bodies you can not dismiss easily.
I am trying to find the answer as to why vasectomized Guys who developed Auto immune after exposing their sperm to blood get low FSH, LH and DHT?

I will be seeing Emerson in Jan.

Just a quick note:

Been on copper for a week now. Musculature returning, sexual functioning improving. Again, the effects of changes in heavy metals is quite remarkable and I urge everyone to get theirs checked.

MartinM, Iā€™ll answer those questions soonish.

JN

Did u do a hair analysis or simple CMP?

I wish i could afford to do all this stuff :frowning:

ncbi.nlm.nih.gov/pubmed/7738354

Abstract
Steroid 5 alpha-reductase catalyzes the reduction of testosterone into the very potent androgen dihydrotestosterone. Previously, we showed that human type I 5 alpha-reductase is expressed mainly in the skin, whereas a type II 5 alpha-reductase is more specifically expressed in the prostate. To assess the possible differential effects of various cations on the two types of 5 alpha-reductase, we constructed expression vectors and transfected them into SW-13 cells, a human adrenal carcinoma cell line containing negligible endogenous 5 alpha-reductase activity. The expressed 5 alpha-reductases were analyzed for their sensitivity to Li, Ca, Cd, Cu, Mg, Mn, Ni, Zn, and Fe. The results showed that type I 5 alpha-reductase was strongly inhibited by Cd, Cu, and Zn and moderately inhibited by Ni and Fe, with 50% inhibitory concentration values of 0.9, 1.9, 2.0, 169.2, and 174.3 microM, respectively. In contrast, type II 5 alpha-reductase activity was inhibited only by Cu, with a 50% inhibitory concentration value of 19.2 microM. The data showed that cations could specifically control 5 alpha-reductase activity expression, which is more strongly inhibited in a target tissue, especially the skin.

Just remember what got us into this mess, 4g is a lot of copper.

Iā€™ve recently seen Dr Emerson and after completing a Pyroluria questionerre he is almost certain that I have it.

I did the urine test and tested a few minerals via blood and will get the results in about 2 weeks.

Pyroluria is very interesting to me because it my problems started as i became 19 and had a few bad things happen in life. I am not convinced it could cause symptoms that we suffer though, no way.

It will be good to see what sort of treatment regimen you undertake though J89, keep us updated mate.

I think Pyroluria can go back a long way in your life, if it indeed is caused by that. Some argue that itā€™s an underlying infection of some sort.

Either way, anything that involves zinc deficiency certainly can cause most of our symptoms especially the sexual ones.

I have previously taken copious amounts of zinc and failed the taste test every time. This fact has always played on my mind. Now Iā€™m hoping Iā€™ve found an answer to that.

The infection part has always been at the back of my head because my crash actually happened the same week that I had a bad case of pharyngitis and impetigo (both caused by strep) and who knows what other secondary infections.

Weather it could actually be the infection itself still lingering or some type of action/reaction by the the body responding to the infection (auto-immune, anti-bodies, etc.) I have no idea.

JN I really believe you are on the right track and would be surprised if you are not cured soon. Metals definitely play a role in our symptoms. I know this because I have days I never before dreamed woud be possible during a heavy metals detox. There was another person on this forum who had very high levels of copper and once he addressed that he began to feel better. His issue was too much copper, so he wasnā€™t supplementing like you are.

Copper and adrenal fatigue have a huge connection.

Are you suggesting that we avoid copper supplementation?