25 Year old UK guy, low testosterone / adrenal dysfunction? - AnabolicMinds.com - Page 4

25 Year old UK guy, low testosterone / adrenal dysfunction?

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  1. New Member
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    Sounds promising but don't get your hopes up.

    Latest endo I saw was Professor and on the board of Androgen Society in the UK. Thought I was fine with a level of 9.9 ...

    Hope you have better luck!

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    Quote Originally Posted by qwerty42 View Post
    Sorry hadn't seen this Mr TT.

    Its no mucus but swelling instead. With a post nasal drip as well. Water does help it and it actually hasn't been as pronounced the last 3-4 nights.

    (The changes I've made in the last 10 days include dropping all supplementation and starting Test - Cyp )
    If you take an antihistamine at bedtime would you not wake up with this swelling??
    Your cortisol levels are near their upper limits during the day. This can tax your adenal glands, and deplete your progesterone levels and
    DHEA. At night cortisol normally drops to almost nothing anyway, but if you are depleting your prehormones to cortisol, your levels may
    be getting really super low. Next, you may be having HISTAMINE problems. During the day your high cortisol is suppressing the symptoms,
    but at night, when your cortisol is naturally low, the uncleared histamine causes swelling.
    After you test the nighttime OTC antihistame, if it works, 500mg of vitamin C, before bed, may solve your problem.
    I use liposomal vitamin C for this same problem. HISTAME also helps.
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    Qwerty, can I ask how you performed the blood tests with Geneva. Like how u drew blood and sent the samples. Also how did u get around it asking for practitioner id, could u pm me this if possible, I'm just thinking ahead to the future
    •   
       

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    If its for the NutrEval you will need to go and have it drawn in Harley St so it can be centrifuged etc.

    I personally have a close friend who is consultant and he simply registered with Genova for me and also drew the blood which I then posted. (Genova send you the vacutainer / needle etc)

    I'd either ask your GP to register or you can order quite a few of the Genova tests through Smart Nutrition (google it I can't post links)
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    To update my own situation:

    I've had my 23andme genetic results gone over and its clear I've got a few problems with methylation.

    Major ones being being an MTHFR mutation a CBS mutation and COMT mutation. I'm now on a low sulfur diet (cut out onions, garlic, cruciferous veg, dairy) and been on a new supplement package for the last 5 days. No changes as of yet but its early days.

    I'll be having my Testosterone levels checked next Monday, at which point I'll have been on Test Cyp x 2 per week for just over 3 1/2 weeks.

    Still no libido to report or any improvement in symptoms. Have got to imagine its going to come back high and confirm low T is not the real cause of my symptoms.
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    If you're interested in a brief presentation in how blockages in methylation can contribute towards lower T levels, depression, anxiety, CFS etc then have a look at this:
    h ttp://vimeo.com/33039195#
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    Quote Originally Posted by qwerty42 View Post
    If you're interested in a brief presentation in how blockages in methylation can contribute towards lower T levels, depression, anxiety, CFS etc then have a look at this:
    h ttp://vimeo.com/33039195#
    Excellent information and it is the future of medicine ...
    I am not a medical Dr, please keep in mind that this answer is for information purposes only, and is not intended to diagnose, treat or replace sound medical advice from your physician or health care provider.
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    Hey subbin in here for some good info. 2 quick questions, and excuse my ignorance if they were discussed in the last 13 pages. Why were you avoiding caffeine along with gluten and alcohol? I have done the same but am a caffeine junkie. And have you researched methyl folic acid?
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    Yeah - the presentation there talks about 5MTHF methylfolate (note- note methyl folic acid, no such thing). That is one supplement which I have started.

    Avoided caffeine as I was getting crashes after drinking it. Ostensibly I did it as its not supposed to be great for adrenals. I'd imagine if / when I get things sorted I will have black coffee in moderate quantities again as I enjoy it.

    Alcohol for similar reasons and because its obviously another toxin for your body to process. When your body is struggling to methylate it is also not detoxify properly as I understand it. I'd also found that, and having never had problems with it in the past, since I've been ill the morning after drinking alcohol I would have pronounced anxiety / agitation. Strangely though I would have a hint of libido, which would otherwise never be present. I believe this is to do with problems with dopamine - possibly not breaking it down quickly enough once made, but conversely not making enough day to day to have normal mood / libido.

    Again I'm hoping that once methylation is working properly I can go back to enjoying some drinks.

    Gluten - I cut it out on Matrix's suggestion. I've since had two tests show no real problem with gluten sensitivity but have decided to keep it out as since I cut out bread / cereal/ pasta I've noticed I never crave foods and I don't think its an essential food to keep in when I eat plenty of veg/ fruit / meat /seafood.

    I don't subscribe to the view that its the devil - I'm sure many people can get away with it fine, but I'm not sure how great it is for the gut overall. I used to eat a lot of it as carbohydrate around training / matches when I was fit but if / when I'm better I don't think I'll go back to eating it. Will get my carbs through potatos / s potatos / fruit in the main and save it for the odd treat like pizza or what have you.
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    Quote Originally Posted by qwerty42
    Yeah - the presentation there talks about 5MTHF methylfolate (note- note methyl folic acid, no such thing). That is one supplement which I have started.
    Outstanding... 5MTHF has become of serious interest to me. Forgive me for dumbing the name down, you clearly know your stuff. I've been told this supplement can take up to two months to really take effect. And the caffeine issue should have been a no brainer as it aggravates adrenal fatigue. I am going through a lot of similar things right now as well. I definently have a gluten intolerance though, previously drank heavily, and have hyperthyroidism. My endocrine system is so messed up I had a test level of 214 and 3 weeks later 608. Keep us posted on things. Good luck.
    Edit: Mucuna Pruriens is a very versatile bean and has personally helped me with mood, libido, anxiety, and sexual stamina. The stuff is cheap and very effective. Don't know how much you already know of it but there is a lot of info here and online. Never seen any side effects at 500 mg to several grams daily.
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    Quite alright - I am definitely no expert, just learning myself out of necessity!

    Yeah I don't think it would be a quick fix with it - if methylation hasn't been working for a while then you may even get worse first as I understand it.

    I think it would be important to test first and find out where you are at.

    Interesting that you mentioned Muccuna Pruriens - I think it is a precursor to dopamine so would make sense that it helps you. The problem with me is I think my production of dopamine is not working, so whether supplementing precursors would help or not is possibly questionable.

    If you're not working with a natural practitioner then I would recommend Matrix. He may have his detractors but I believe he knows his stuff and hes been great with me.Time will tell with my situation I guess.
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    Quote Originally Posted by Matthersby View Post
    Outstanding... 5MTHF has become of serious interest to me. Forgive me for dumbing the name down, you clearly know your stuff. I've been told this supplement can take up to two months to really take effect. And the caffeine issue should have been a no brainer as it aggravates adrenal fatigue. I am going through a lot of similar things right now as well. I definently have a gluten intolerance though, previously drank heavily, and have hyperthyroidism. My endocrine system is so messed up I had a test level of 214 and 3 weeks later 608. Keep us posted on things. Good luck.
    Edit: Mucuna Pruriens is a very versatile bean and has personally helped me with mood, libido, anxiety, and sexual stamina. The stuff is cheap and very effective. Don't know how much you already know of it but there is a lot of info here and online. Never seen any side effects at 500 mg to several grams daily.
    I no longer make any recommendations with out genetic testing. By taking this approach it will reduce cost over worthless and possible toxic choices of supplements. The common response I see when people start taking meds, or supplements drs recommend they work for a while then stop. Since taking this approach the medical professionals I have been working with are seeing a significant change in their patients which have been to Dr to Dr for many years. Again this is not the magic bullet for every one, but it does give a better insight to the more challenging cases I deal with from Dr's. People with lyme, this has been a God sent because its allowing people who have been blasted with antibiotics still with no resolution. Now diets can be developed and supplements which may personalize to help you then to harm you. Good example would be people recommending NaC 600 mgs. Not knowing anything about the persons biochemistry. In this persons biochemistry it could have been a disaster potential causing neurological problems .Unless a person knows what they are doing leave this to a expert in the field. So many people end up doing more damage then good trying to self dedicate with OTC supplements.
    I am not a medical Dr, please keep in mind that this answer is for information purposes only, and is not intended to diagnose, treat or replace sound medical advice from your physician or health care provider.
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    genetic testing like 23andme?

    qwerty how much did it cost you to get this done in the UK
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    All in - including the intepretation consultation and posting it back it cost me around $500

    If it works then its worth it - the theory seems sound, just hoping to see some changes soon.
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    Had some new labs back which tend to support problems with my methylation and b-vitamin usage, namely sky high serum B12 and over range Folate (Not entirely sure HOW high folate is as the lab doesn't measure past 20. My iron also seems to be creeping up again after last giving blood to get it down in April. Matrix can correct me if wrong but I believe this is because the body doesn't deal well with build up of iron when methylation isn't working.

    Serum B12: 1940 ng/L (211 - 911)
    Serum folate: >20 ug/L (4.6 - 18.7)

    Ferritin 95 ug/L (30-330)
    Serum TIBC 52 umol/L (40-70)
    Serum iron level 30 (10-30)
    Saturation iron binding capacity 58%
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    Quote Originally Posted by qwerty42 View Post
    Had some new labs back which tend to support problems with my methylation and b-vitamin usage, namely sky high serum B12 and over range Folate (Not entirely sure HOW high folate is as the lab doesn't measure past 20. My iron also seems to be creeping up again after last giving blood to get it down in April. Matrix can correct me if wrong but I believe this is because the body doesn't deal well with build up of iron when methylation isn't working.

    Serum B12: 1940 ng/L (211 - 911)
    Serum folate: >20 ug/L (4.6 - 18.7)

    Ferritin 95 ug/L (30-330)
    Serum TIBC 52 umol/L (40-70)
    Serum iron level 30 (10-30)
    Saturation iron binding capacity 58%
    serum b-12 and folates are worthless when supplementing. It does not show a true indication. Methylation not working right will cause a build up of not just iron, but also copper and other metals and toxins as well. Follow the info on ATM from Desert Eagle about phlebs and HRT..As usual people tend to miss the most crucial things, but run around like chicken with out a head wondering why they are having issues.
    I am not a medical Dr, please keep in mind that this answer is for information purposes only, and is not intended to diagnose, treat or replace sound medical advice from your physician or health care provider.
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    The results from the ACTH test should indicate primary or secondary adrenal insufficiency.
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    Quote Originally Posted by kateean2
    The results from the ACTH test should indicate primary or secondary adrenal insufficiency.
    Depends on.whose Interpreting them. majority of.times its black or white. Most of cases are.in the gray ..
    I am not a medical Dr, please keep in mind that this answer is for information purposes only, and is not intended to diagnose, treat or replace sound medical advice from your physician or health care provider.
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    Getting my T level results at the end of the week. I'll have been injected 50mg x 2 per week sub q and so far not feeling any different.

    Had quite an interesting chat with a really helpful guy at the clinic doing the bloods - it was a steroid harm reduction clinic that do free bloods, so he tests upwards of 50 guys a week.

    He said that hes got a couple of natty high level bodybuilders who come to get levels done out interest and they test around 12nmol (350 US) and they don't report any symptoms of low T, libido is fine etc and they carry a fair amount of mass.

    He also said that on average he doesn't see that many people above 20 - 21.

    Admittedly the majority of people attending have at some point used AAS so may not be a good reflection but he doesn't use and said hes tested himself multiple times when hes had odd symptoms, such as reduced libido and his T has always been a consistent 14-15 (406 - 450) and he feels fine the majority of the time.

    Just thought it was quite good food for thought - chasing the golden 700 - 800 may well not be the magic bullet for a lot of guys.
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    Qwerty is this the manchester exchange . Did you have the right post code. Can you pm me your experience of using the clinic and how you got an appointment, if it cost, weekday only. This may be a usefull resource if I trial Clomid next year, just to like yous see if higher test levels are the magic bullet to feeling good or not
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    PM sent mate
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    Quote Originally Posted by qwerty42 View Post
    Getting my T level results at the end of the week. I'll have been injected 50mg x 2 per week sub q and so far not feeling any different.

    Had quite an interesting chat with a really helpful guy at the clinic doing the bloods - it was a steroid harm reduction clinic that do free bloods, so he tests upwards of 50 guys a week.

    He said that hes got a couple of natty high level bodybuilders who come to get levels done out interest and they test around 12nmol (350 US) and they don't report any symptoms of low T, libido is fine etc and they carry a fair amount of mass.

    He also said that on average he doesn't see that many people above 20 - 21.

    Admittedly the majority of people attending have at some point used AAS so may not be a good reflection but he doesn't use and said hes tested himself multiple times when hes had odd symptoms, such as reduced libido and his T has always been a consistent 14-15 (406 - 450) and he feels fine the majority of the time.

    Just thought it was quite good food for thought - chasing the golden 700 - 800 may well not be the magic bullet for a lot of guys.
    I keep telling people this. Guys are chasing numbers. I have some monsters I train with TT of 400-450, but their GH, cortisol, thyroid are very healthy. Which can make a huge difference when the other systems are compensating for each other. Its not about testosterone its about balancing out the person bio-individuality.
    I am not a medical Dr, please keep in mind that this answer is for information purposes only, and is not intended to diagnose, treat or replace sound medical advice from your physician or health care provider.
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    No real positive changes to report as of yet. Still feeling awful.

    I'm wondering if a main problem for me really is low noepinepherine. Two of the markers for its urinary metabolites 3methyl-4-OHphenylglycol and vanillyl mandelic acid are both low on my nutreval and only just in range in comparison to the serotonin and dopamine ones which seem at good levels.

    Low mood, no libido, low energy, difficulty concentrating, low body temperature in the prescence of goodl thyroid / adrenals, temperature that drops following exercise, mild hypotension on rising from a chair quickly, and sinus congestion could quite neatly fit under low NE symptoms could they not?

    And just further to that I'm additionally thinking low NE over low dopamine due to the fact my prolactin is always in range and low - middle.
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    Quote Originally Posted by qwerty42 View Post
    No real positive changes to report as of yet. Still feeling awful.I'm wondering if a main problem for me really is low noepinepherine. Two of the markers for its urinary metabolites 3methyl-4-OHphenylglycol and vanillyl mandelic acid are both low on my nutreval and only just in range in comparison to the serotonin and dopamine ones which seem at good levels. Low mood, no libido, low energy, difficulty concentrating, low body temperature in the prescence of goodl thyroid / adrenals, temperature that drops following exercise, mild hypotension on rising from a chair quickly, and sinus congestion could quite neatly fit under low NE symptoms could they not?And just further to that I'm additionally thinking low NE over low dopamine due to the fact my prolactin is always in range and low - middle.
    People are so focused on thyroid for thermogenisis in the body. It's only one of the multiple mechanism which can stimulate increased temperatures. If you do not correct methylation your neurotransmitters will not work properly. Why a lot of people end up on drugs which do not have to be.
    I am not a medical Dr, please keep in mind that this answer is for information purposes only, and is not intended to diagnose, treat or replace sound medical advice from your physician or health care provider.
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    Update:

    Got my T level results back over the phone from the clinic. Pretty confusing. Testosterone is only at 16 (464) after 3.5 weeks at injecting 50mg x 2 per week. Estrogen has risen but still in range 94 (28 - 156)

    My LH and FSH have dropped but are still detectable and my nuts have shrunk further so I think it is genuine T.

    Obviously I don't feel any different so I'm wondering whats happening.

    a) underdosed? should I increase to 75mg x 2

    b) body chewing through Testosterone and using it up quickly?

    c)???

    The other part of me is thinking that I should just get off it and run a PCT as we think its unlikely T is the cause of my problems with a baseline of 417.
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    Quote Originally Posted by qwerty42 View Post
    Update:

    Got my T level results back over the phone from the clinic. Pretty confusing. Testosterone is only at 16 (464) after 3.5 weeks at injecting 50mg x 2 per week. Estrogen has risen but still in range 94 (28 - 156)

    My LH and FSH have dropped but are still detectable and my nuts have shrunk further so I think it is genuine T.

    Obviously I don't feel any different so I'm wondering whats happening.

    a) underdosed? should I increase to 75mg x 2

    b) body chewing through Testosterone and using it up quickly?

    c)???

    The other part of me is thinking that I should just get off it and run a PCT as we think its unlikely T is the cause of my problems with a baseline of 417.
    Examine SHBG and you are chewing through it like crazy.
    Dr patients working with are on 30 mgs x 2 times a week trough at 600. Some thing is not right.
    I am not a medical Dr, please keep in mind that this answer is for information purposes only, and is not intended to diagnose, treat or replace sound medical advice from your physician or health care provider.
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    SHBG is good.

    SHBG 23 nmol/l (13 - 71)

    Have messaged you on Skype.
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    Testosterone bumped to 62.5mg x 2 per week for a few weeks.

    If no change in how I'm feeling then going to look to transition off as its pretty clear low T is not the primary cause of my symptoms.

    Have HCG, Clomid, Torem and DAA if / when it comes to that.

    Am also mindful that last month prior to starting TRT my Estrogen was 20pmol/l (28 - 156) and 4 weeks into TRT it is 94pmol/l so have added 0.5mg Arimidex x 2 per week while I am still using the Test.
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    Ok so as an update.

    Felt no benefits from the Testosterone and had my levels re-checked, they were at 23.5 or 680. Libido was unchanged. (See the bottom of the post for a little study I performed)

    Transitioned off it onto HCG 1500iu EOD + 1mg Arimidex for the last couple of weeks along with TOCO 8 (Vit E supp) & Dopa Mucuna (15% L-Dopa)

    Finished the HCG and in the first week of DAA and Torem which I'm running at 3g and 120/90/60/30 respectively. Adex dropped to 1/2mg Mon / Thurs.

    Testicle size doesn't seem to have grown much - maybe a little. Have felt some hints of libido when on the HCG.

    Symptoms remain pretty much unchanged with eyes being the most pressing. Physical energy is not as bad as it was but mental acuity is terrible compared to what it was - memory especially poor and 'brain fog' quite apparent.

    Last week I saw an opthamologist regarding my photophobic / dry eyes / floaters and he suggested a diagnosis of blepharitis but couldn't suggesta cause. He has suggested bathing them morning and night which I am trying. Doesn't seem like a particularly accurate diagnosis however..

    I have also had the results of two more tests back - urinary heavy metals and leaky gut testing.

    My gut is ok and the heavy metal I was suspecting - lead (in a way hoping - by way of an answer) is within the reference range.

    The only toxic elements outside the reference range are:

    Thallium: 0.468 (<=0.273)
    Gadolinium 0.027 (<=0.019)
    Cesium 10.89 (<=10.10)
    Rubidium 2,674 (<= 2,486)

    I'm not sure how pressing they are or if they could even affect my symptoms.

    My sulfur levels are now consistently down to around 400 mg/L and I have been following the methylation protocol as laid out. No positive changes to report so far really.

    I have continued to try and add 120 - 130 bpm cardio in on a stationary bike, sometimes with a sweatsuit, and don't feel any worse for doing it. In fact quite the opposite, I feel better after doing it and don't seem to encounter any delayed fatigue as a result.

    I would also note that over the Xmas period I spent more time with friends and, having not drank for 8 months, allowed myself several drinks on one or two nights. I felt much better during - sharper, more like my old self and didn't suffer any ill effects other than the usual foggy head in the morning - I definitely noticed libido upon waking. The rest of my symptoms were no better or worse for having a few drinks.

    I definitely think that a dopamine / noepineiphrine problem has something to do with my symptoms.


    ------------------

    Un-related but interesting study:

    A few of my close friends who have seen how much I've been struggling and know a lot of the ins and outs of it decided to get their T levels checked with me. It has definitely re-inforced one and for all that people shouldn't wholly chase numbers when it comes to Testosterone.

    Its obviously not scientific but we all had blood drawn at roughly the same time in the AM and had all been to bed at a normal time the night before with no alcohol consumed. None of them have used AAS before and none of them have had T levels checked. We are all mid twenties.

    Friend 1: Rugby player - heavily muscled, not that lean but very strong , drinks a fair bit. Single but gets through a lot of women - self reported libido is very high. T level - 16 (464)

    Friend 2: Non - exerciser and pretty weak in general, average build, verging on overweight, in a long term relationship. Libido is so - so but no problems. Very confident demeanour. T level - 23 (667)

    Friend 3: Gym goer - lean and fit with a good amount of muscle. Eats well etc Reported libido very high and have shared a flat with him so can attest to this. T level - 12 (350)

    Obviously non of the above is scientific and I am relying on their reported information but I thought it was interesting neverthless.
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    There may be a way just to.neurotransmitter from.neuroscience done. One of colleagues showed me a may to be able us the system. Sounds to.me kavinace may be the a big help since alcohol boost ups gaba which would.help.to offset the.norephinpherine. Methylation is a huge piece of the puzzle but typically people.need neurotransmiter support to.get the synergistic.effect.
    I am not a medical Dr, please keep in mind that this answer is for information purposes only, and is not intended to diagnose, treat or replace sound medical advice from your physician or health care provider.
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    I'm just not sure that high NE is my problem to be honest; quite the opposite. Need to get in contact with you via Skype - hope you have enjoyed the Xmas break.

    My symptoms undoubtedly fit more with low noepinepherine - low body temperauture with normal thyroid / adrenals, low mood / motivation, poor concentration, poor memory, no libido, lowish blood pressure etc

    High NE would surely have me anxious, high blood pressure, sweating, palpitations etc - I have none of theose.

    NutrEval urinary metabolites also agree with theory of low NE.

    Looking at the methylation diagrams you can see how lead would interfere with neurotransmitter production, but now that I've looked at heavy metals across blood, urine and hair with no problems - it would seem to rule that out.

    Having been at 1000mcg of methyl B12 and 1000mcg of methylfolate for 8 weeks now I'm wondering if I could tolerate more of either / both and perhaps wouldn't respond until they were higher.
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    Chronic Fatigue Syndrome

    A Roadmap For Testing And Treatment




    Introduction

    Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME), is a neurological condition characterized by cognitive dysfunction, mood disorders, fatigue, post-exertional malaise, and many more symptoms.


    The following guidelines are an aid to determining: (1) whether you have chronic fatigue syndrome, and if so: (2) which laboratory tests should be performed to identify the infections and other causal factors that underpin your ME/CFS, and: (3) what treatments you can follow to address these infections and causal factors, and treat the symptoms that arise from them.


    These guidelines were devised primarily by individuals with ME/CFS, mainly from the Phoenix Rising forum. (The forum thread in which this roadmap is discussed is here).




    Chronic Fatigue Syndrome Diagnosis

    There are currently no laboratory tests or biomarkers that can be singularly used to diagnose ME/CFS, so diagnosis is performed on symptoms alone. ME/CFS manifests a whole array of clinical symptoms, both physical and mental, which typically include the following:


    SYMPTOMS OF CHRONIC FATIGUE SYNDROME

    Persistent fatigue not due to ongoing exertion, and not really relieved by rest. The fatigue is of a new onset, and and greatly reduces activity levels, compared to before the onset.
    Cognitive dysfunction (brain fog): short-term/working memory deficits, problems recalling words or names, disorientation, loss of focus and awareness.
    Mood disorders which may include: emotional lability, depression, irritability, anxiety, panic attacks.


    Post-exertional malaise: symptoms profoundly worsen after physical and/or mental exercise, leaving an individual very incapacitated for several days, or even weeks, after exertion.

    Headaches of a type not previously experienced. Tinnitus, dizziness, balance problems, fainting, irregular heartbeat. Abdominal pain, irritable bowel, diarrhea. Unrefreshing sleep.
    Chronic sore throat or recurring sore throat (often from the virus that initiated the ME/CFS condition), chronic cough, chest pain, dry mouth, dry eyes, blurred vision.
    Sensitivities to light, noise and chaotic or busy environments. Sensitivity to heat and/or cold. Increased allergies or sensitivities to foods, alcohol, odors, chemicals or medications.
    Muscle aches/weakness, tingling sensations. Enlarged/painful lymph nodes in neck/armpits. Joint pain moving from one joint to another without swelling or redness.


    For the formal rules of ME/CFS diagnosis, see the CDC's ME/CFS Criteria or the Canadian Consensus ME/CFS Definition.




    Ruling Out Other Conditions

    The inherent problem with diagnosing ME/CFS by its symptoms is that many of the same symptoms manifest in other diseases and conditions such as: Lyme disease, hypothyroidism, celiac disease, lupus, anemia, hepatitis B or C, and many others. Thus if you have symptoms resembling chronic fatigue syndrome, you and your doctor first need to rule out diseases and conditions with very similar symptoms before a diagnosis of ME/CFS can be given with reasonable certainty.


    RULING OUT CONDITIONS SIMILAR TO ME/CFS

    Condition
    Tests and Results Interpretation

    Lyme disease (Lyme borreliosis)


    Lyme disease is caused by a chronic infection with certain species of Borrelia bacteria, these bacteria being contracted through the bite of infected Ixodes ticks. Bites from Borrelia-infected ticks often (but not always) cause a characteristic erythema migrans rash. Early symptoms of Lyme disease include: fever, headache, fatigue and depression.
    Borrelia culture. This is a more reliable test for the Borrelia bacteria that cause Lyme disease. It is available at Advanced Laboratory Services.


    Borrelia IgM and IgG antibodies. Dr A Martin Lerner uses Western blot and ELISA to test for Borrelia burgdorferi IgM and IgG antibodies.1


    More info on testing for Lyme disease:

    Better Health Guy - Lyme Testing



    Hypothyroidism


    Celiac disease


    Celiac disease is an autoimmune reaction triggered by gluten, causing damage to the small intestine and nutrient malabsorption. Celiac disease symptoms vary widely between patients. Info: Celiac Disease Symptoms.
    Transglutaminase antibody blood test and an upper endoscopy with biopsy of the duodenum are used to diagnose celiac disease.


    Since celiac symptoms greatly improve after removing ALL gluten from the diet, if you feel much better going gluten-free, it hints you might have celiac disease (though gluten-sensitive people without celiac disease will also feel better going gluten-free).

    Systemic lupus erythematosus (SLE)
    Most people with SLE will have a positive antinuclear antibody test (ANA), but ANA is usually negative in ME/CFS patients. Thus the ANA test is a useful tool to help distinguish SLE from ME/CFS. Around up to 50% of SLE patients exhibit a red butterfly rash on the face, which is not found in ME/CFS.

    Anemia


    Hepatitis B and C






    More comprehensive lists of diseases that have similar symptoms to ME/CFS:

    Chronic Fatigue Syndrome Diagnosis

    Chronic Fatigue Syndrome: Evaluation and Treatment

    CFS can be caused by chronic infection

    Diseases similar to ME/CFS
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    Causes and Treatments of ME/CFS

    Once you have ruled out common diseases with similar symptoms, and have settled on a diagnosis of ME/CFS, then next stage is to try to identify the underlying infections and other factors that may be causing or contributing to your ME/CFS. This is best performed with the help of a doctor specializing in chronic fatigue syndrome laboratory testing and treatment.


    There are many laboratory tests that people with ME/CFS might choose to take. In this roadmap to ME/CFS testing and treatment, the tests suggested are grouped into various rounds, with the most important tests placed in the earlier rounds. After each round of testing, depending on the test results, advice on an appropriate course of action for treatment is given.


    Tests for causal factors that have a corresponding treatment or cure are prioritized, since the main goal of this roadmap is to guide people with ME/CFS to treatments that may improve or cure their condition. Tests that provide insight into your circumstances of health, but having done so, do not lead to corresponding treatments, are deferred to later.


    The suggested treatment plans are those generally employed by leading chronic fatigue syndrome doctors and researchers in the field. There are no hard and fast rules for chronic fatigue syndrome treatment, and you may wish to follow different courses of action to those given here. These guidelines are an ongoing project which aims to be reasonably comprehensive; but they are not an exhaustive chart of ME/CFS treatments.


    Research indicates that treatment-resistant ME/CFS of unproven etiology generally appears to be associated with viruses from the enterovirus genus (specifically: coxsackievirus B and echovirus) and/or to viruses from the herpes family (specifically: human herpes six virus, cytomegalovirus, Epstein-Barr virus). More treatable or curable forms of ME/CFS may be caused by parvovirus B19, Chlamydia pneumoniae, as well as other microbes. Non-microbial causes or contributory factors to ME/CFS include: mold toxin exposure and pesticide exposure. The first round of testing detailed below suggests you consider or get tested for all these microbes and causal factors.




    Notes on Pathogen Testing

    Most ME/CFS-associated microbes are very commonly found in the general population: Epstein-Barr virus, for example, is found in 95% of adults. Microbes found in the body are generally acquired from infections earlier in life, but once the immune system has them under control, these infections become largely inactive and dormant; so microbes from past infections normally exist in the body in a latent state (though these pathogens can reactivate and become more active if there is weakness in the immune system).


    When a test is performed for a microbe, we want to know not only whether you have it in your body, but more importantly, whether it is active or not. In chronic infections, the level of activity of a microbe can be determined to an extent by the amount of IgG antibodies your body produces in response to that microbe. High levels of IgG antibodies suggests an active chronic infection.


    Antibody testing. Antibody testing is a common way of measuring the activity of a microbial infection in the body. An overview of antibody testing is as follows. The immune system manufactures antibodies specific for each microbe you catch. Antibodies are made to target and bind to a particular microbe, facilitating its destruction. At the onset of a microbial infection (such as when you first catch a cold), the immune system initially responds by making IgM type antibodies to target the microbe. As this acute infection is slowly brought under control (when your cold is finally going), IgM has done its job, and the levels of IgM gradually go down to zero. At the same time, the immune system now starts making IgG type antibodies, which are designed to take over the job of IgM. IgG antibodies remain in the body for your whole life, trying to prevent the same infection from flaring up again.


    In an antibody blood test, it is therefore clear that finding high levels of IgM and no IgG indicates you have an infection in its initial acute stage. Conversely, finding IgG, but little or no IgM, indicates you have a past infection (which is where a microbial infection from an earlier point in your life has now been brought under control by the immune system, and so this infection is in a dormant state). However, finding slightly higher levels of IgG and little or no IgM indicates the infection has not been fully brought under control, and that you have an active chronic ongoing infection. One or more active chronic ongoing infections are often found in ME/CFS patients.


    Antibody levels are measured by what is known as a titer. The higher the titer, the more antibodies you have, and the higher the microbial activity in your body.


    Note that the activity of some microbes, notably enteroviruses, cannot be so accurately determined by antibody tests, due to the fact that these microbes can also live inside human cells, as an intracellular infection. The immune system does not readily make antibodies to microbes living inside human cells, so you may have a significant intracellular enterovirus infection, but show relatively low antibody levels when you take a test. Other means of pathogen testing may be employed in these situations. Alternative methods of testing for the presence of pathogens in the body include: PCR (polymerase chain reaction) and viral culture. Viral culture is usually the "gold standard" by which other viral detection methods are judged.


    Empirical testing. While it is always better to test for pathogens or health conditions before using treatments, because some tests are expensive, not available in all countries, or might not always be reliable or sensitive enough to detect certain pathogens, you may choose to bypass the test and go straight to treatment. This is known as empirical testing: using a treatment itself as a test for a pathogen or health condition. Empirical testing makes the assumption that if you get better on the treatment, you may well have the pathogen or the health condition that the treatment targets. (However, most drugs and herbs have multiple actions, so for example if an antibacterial drug helps, it may be for reasons other than its antibacterial properties).




    1st Round Tests

    The first set of ME/CFS causal factors to consider and/or test for is shown in the table below. The various microbial (and other) causal factors are listed in the left hand column, and recommended tests for these causal factors (plus some basic guidance on interpreting the test result) are given in the right hand column of the table.


    FIRST ROUND TESTS

    Causal Factor
    Tests and Results Interpretation

    Epstein-Barr virus (EBV)


    There is a high 95% prevalence of Epstein-Barr virus in the adult population, so most people will have this virus in their system, but usually in a latent inactive state. However, if you have an active EBV infection, it is possible this may be contributing to or causing your ME/CFS symptoms. New evidence indicates that some subtypes of ME/CFS may be due to partial reactivation of Epstein-Barr virus.1 2
    Epstein-Barr virus antibodies. A blood test showing an EBV VCA IgG antibody titer of 1:1280 or more suggests an active infection.1


    Dr A Martin Lerner says that a positive diagnosis of Epstein-Barr virus infection requires a positive EBV early antigen (EA) diffuse test, and/or a positive EBV IgM viral capsid antibodies (VCA) test.1



    Epstein-Barr virus PCR.

    Lymphocyte subset panel. If this test shows elevated CD8 T-cells, this can indicate an ongoing viral infection with EBV or cytomegalovirus, which both raise CD8.1

    Human herpes virus six (HHV-6)


    HHV-6 is found in over 90% of adults, usually in a latent inactive state. If you have an active HHV-6 infection, this may be contributing to or causing your symptoms, as active HHV-6 is linked to ME/CFS.1 2 There are two main variants of HHV-6: variant A and variant B, often denoted as HHV-6A and HHV-6B. Tests for HHV-6 do not usually distinguish between the two variants.


    Most individuals that test positive for HHV-6 will have the more benign HHV-6B variant; but just under 3% will have the more nasty HHV-6A variant. It is this HHV-6A variant which is more strongly linked to ME/CFS.1 So a positive test for HHV-6A may be quite significant if this virus is active.


    Dr Kazuhiro Kondo has a theory that partial reactivation of HHV-6 may cause ME/CFS, as well as depression and bipolar disorder.1
    HHV-6 antibodies. A blood test showing an HHV-6 IgG antibody titer of 1:320 or more suggests an active infection. Dr Jose Montoya believes that IgG antibody levels are a better guide to the HHV-6 activity in the central nervous system than viral culture from the blood.1


    Nested PCR for HHV-6A. Regular tests do not distinguish between the these two variants of HHV-6, so if you tested positive for HHV-6, you could have either (or both). However, nested PCR tests can specifically determine if you have HHV-6A.


    HHV-6 PCR.



    Further info:

    HHV-6 Foundation: Viral Testing

    HHV-6 Foundation: Research Papers

    Cytomegalovirus (CMV)


    Cytomegalovirus is found in 50% of adults, usually in a latent inactive state. If you have an active CMV infection, this may be contributing to or causing your ME/CFS symptoms.
    Cytomegalovirus IgG antibodies. Dr A Martin Lerner says that a diagnosis of cytomegalovirus infection is made by examining the CMV IgG antibody titer. (Lerner says the IgM titer for CMV is inaccurate and insensitive.) The higher the CMV IgG titer, the greater the viral load.1




    Cytomegalovirus PCR.

    Coxsackievirus B and echovirus


    There are six coxsackievirus B types and thirty-two different echoviruses. All are part of the enterovirus genus. Coxsackievirus B is found in 55% of adults, according to a study in Scotland.1


    If you have an active coxsackievirus B or echovirus infection, this may be contributing to or causing your ME/CFS symptoms.1 2 3 4


    Part of the difficulty in treating a chronic enterovirus infection is that this virus can exist in two distinct forms in the body: the regular enterovirus, and the non-cytopathic enterovirus. The infection begins with a regular enterovirus, but then some regular enteroviruses convert into non-cytopathic enteroviruses within the body. Unlike regular enteroviruses, these non-cytopathic enteroviruses reside within human cells, and so are hard to detect, but may be contributing to or causing your ME/CFS symptoms.1 2 3
    Coxsackievirus B and echovirus antibodies. Only one testing lab has an enterovirus antibody test sufficiently sensitive to detect the low-level "smoldering" chronic enterovirus infections of ME/CFS: ARUP Lab, in Utah. These test are: Coxsackievirus B Antibodies, Echovirus antibodies. Titers of 1:320 and higher are good indicators of an active infection. ARUP tests can be ordered directly, or ordered through Labcorp.


    Stomach biopsy (immunohistochemistry). This test, which requires a sample of stomach tissue obtained by an endoscope, is the most reliable for detecting a chronic enteroviral infection. Dr Chia's lab can process the stomach tissue sample.


    PCR testing is not sensitive for chronic enteroviral infections, as these viruses disappear from the blood after the acute phase of the infection is over (the acute phase of an enterovirus infection is a short window that starts just after initial exposure, and last for around 10 days).


    Complement fixation test (CFT) is useless for testing enteroviral activity in chronic infections. The CFT is only of value within the acute phase (first 10 days) of an enterovirus infection.


    Non-cytopathic enterovirus testing. There are no commercially available tests for non-cytopathic enteroviruses, which reside within human cells.


    Further info:

    Enterovirus Foundation: Testing for chronic enteroviral infections

    Parvovirus B19


    Parvovirus B19 is found in 50% of adults, usually in a latent inactive state. If you have an active parvovirus B19 infection, this may be contributing to or causing your symptoms.1 2
    Parvovirus B19 antibodies. A blood test showing a parvovirus IgG antibody titer of 1:?? or more suggests an active infection.

    Chlamydia pneumoniae


    Chlamydia pneumoniae is an intracellular bacterium (one that lives inside human cells) which is found in a latent state in 74% of the adult population, according to a study conducted in Israel. About 10% of this population had a persistent active infection with this bacterium.1


    Further info:

    Cpnhelp.org

    Stanford University: Chlamydia Pneumoniae
    Chlamydia pneumoniae

    Mold toxin exposure


    Mold can synthesize toxic substances (mycotoxins) that can damage the central nervous system, intestines, kidneys. These toxins have been linked to the triggering of ME/CFS.1
    Mold growth can be visible, or it may be hidden behind walls and domestic appliances. People can become ill from hidden mold growths without knowing the cause (though a moldy, musty smell in the environment provides a warning to the possible presence of mold). Usually several species of mold can be found in a mold infestation. Mold species that have very potent mycotoxins include: Stachybotrys, Memnoniella and Acremonium. These three species depend on damp cellulose material (wood, paper, cotton) for nutrition, and thus typically thrive in water damaged-buildings that contain plenty of wood, wallpaper, etc.

    Pesticide exposure


    Chronic exposure to significant amounts of organophosphate or pyrethroid pesticides can cause ME/CFS-like illnesses, or act as a co-factor in precipitating ME/CFS.


    Further info: PAN
    Sources of pesticide exposure include garden sprays used by you or your neighbor, which can be tracked into the house on shoes. Agricultural exposure may occur in rural areas through crop spraying. Pyrethroids are found in pet flea control products. Pesticide residues on foodstuffs are generally very minimal, and are not of concern.1 Organophosphate pesticides are detoxified from the body by an enzyme called paraoxonase; differences in the paraoxonase gene can increase an individual's susceptibility to organophosphates.1 2
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    1st Round Treatments

    In the light of the results of the first round of tests:


    • Epstein-Barr virus infection. If your tests indicate you have a chronic Epstein-Barr virus infection and no other infections, it is quite possible that your symptoms are in fact a case of chronic Epstein-Barr virus syndrome (chronic mononucleosis syndrome), which closely resembles ME/CFS. Dr. A. Martin Lerner suggests that chronic Epstein-Barr can be considered a subtype of ME/CFS. Chronic Epstein-Barr infection often clears itself up within 6 months or less, and you should then achieve remission from your symptoms. Antivirals such as valacyclovir (Valtrex) can hasten the healing process.1 Nexavir (formerly Kutapressin) may have some in vitro activity against Epstein-Barr virus.1

    • Herpesviruses infection. If your tests indicate you have an active infection with one or more of the three herpesviruses: HHV-6, cytomegalovirus and Epstein-Barr virus, then Dr. A. Martin Lerner has recently shown that an anti-herpesvirus treatment comprising the antiviral drugs valacyclovir (Valtrex) and/or valganciclovir (Valcyte) can return ME/CFS patients to a near-normal to normal life, provided you have no active co-infections with pathogens other than these three herpesviruses. Those who experience side effects from valacyclovir can substitute with famciclovir (Famvir), an antiviral which is usually much better tolerated. Unfortunately, if you have active co-infections with pathogens other than these three herpesviruses, this antiviral treatment on its own has proved ineffectual, according to Dr Lerner. However, it is possible (though not proven) that this anti-herpesvirus treatment, when combined with treatments for the other pathogens, may get results.1



    The antimalarial drug artesunate has efficacy against cytomegalovirus, and against HHV-6.1 2 Nexavir (formerly Kutapressin) displays potent in vitro activity against HHV-6.1 2 The HIV drug raltegravir may be effective against the whole family of herpesviruses.1

    • Enterovirus infection. If your tests indicate you have active an infection with one or more enteroviruses of the coxsackievirus B or echovirus species, then Dr John Chia has found that around 25% of people will noticeably improve with a herbal treatment named oxymatrine (although Dr Chia suggests that patients with autoimmune tendencies should not take oxymatrine).1 More info: Dr Chia: Oxymatrine, Oxymatrine, Autoimmunity, ME/CFS and FM.


    Dr Chia has also used interferon therapy for CFS patients with enterovirus infections; many patients went into full remission after this therapy, but unfortunately tended to relapse within around six months, so this is not a permanent cure, but an encouraging result.1 More info: Chia's Interferon Therapy.

    • Parvovirus B19 infection. If your tests indicate you have high parvovirus B19 antibodies and nothing else, then intravenous immunoglobulin treatment may fully cure you.1

    • Chlamydia pneumoniae infection. If you have Chlamydia pneumoniae and no other infections, then antibiotic treatment with azithromycin or rifampin may clear this bacterium, and may cure fully your ME/CFS. Chlamydia pneumoniae infection is an uncommon but treatable cause of chronic fatigue.1 More info: Cure from Chronic Fatigue Syndrome with Dr. Stratton's original protocol.

    • Toxic mold. If you have been exposed to high amounts of toxic mold, ensure you prevent or minimise further exposure. If exposed in your home, carefully clean off the mold growths (wearing a face mask is advised), and reduce humidity by increasing ventilation, in order to inhibit mold regrowth.

    • Chronic organophosphate and/or pyrethroid pesticide exposure. If you have been chronically exposed to organophosphate or pyrethroid pesticides, ensure you prevent any further exposure. The amount of pesticides residues found in foodstuffs is very minimal, and not of concern.


    Note: some cases of ME/CFS may be due to a combination of the above pathogenic infections (as well as other causal factors). In which case, conceivably, it may be possible to combine the above treatments in order to tackle the various individual infections.


    Before undertaking any treatment, however, you should first become familiar with any risks of taking that treatment, and if unsure, you should run it by a good ME/CFS doctor first.


    More info: Antivirals and Antibiotics for ME/CFS.
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    Adjunct Therapies for ME/CFS

    As well as specific pathogen-targeted therapies, there are many adjunct or additional therapies that can be helpful in chronic fatigue syndrome. These include:


    • Immunomodulators. These are drugs and supplements that modulate the immune system. Many immunomodulators used in ME/CFS shift the immune response from the Th2 mode to the Th1 mode. There is evidence that ME/CFS patients are stuck in the Th2 mode, whereas they should really be in the Th1 mode; it is the Th1 mode immune response that fights viruses and intracellular bacteria.1 These Th2 to Th1 mode shifting immunomodulator drugs and supplements include: low-dose naltrexone, Imunovir, oxymatrine (probably), Nexavir (formerly Kutapressin), pine cone extract, heparin, and transfer factor.1 2


    Note that Th2 to Th1 mode shifting immunomodulators can make you feel worse for the first few months, but benefits accrue after that initial period. Note also that Dr Paul Cheney believes immunomodulators lose their effect if you do not take regular breaks from them. Regular breaks means taking them on an on/off regimen, such as for example: on for 5 days, off for 2 days; and on for 3 weeks, off for 1 week.


    Other immunomodulators used in ME/CFS include: artesunate (often used by Dr Cheney; it inhibits the effects of TNF-alpha 1), azithromycin (an antibiotic that lessens ME/CFS symptoms 1), etanercept (inhibits the effects of TNF-alpha), Ampligen (a powerful but very expensive immunomodulator drug that modulates interferon and RNase L).


    Low-intensity exercises like walking, tai chi and yoga help shift towards the desirable Th1 mode, whereas higher intensity exercise and longer workout durations shift towards the undesirable Th2 mode.1

    • Low-dose naltrexone (LDN). A low-dose naltrexone regimen (3 to 4.5 mg daily, taken before bed) can help halt the progression of various autoimmune and neurodegenerative diseases, including multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, Sjogren's, Parkinson's, Crohn's. Many ME/CFS and fibromyalgia patients find LDN beneficial.1 LDN acts as an immunomodulator that stimulates the desired Th1 immune response, and LDN is believed to increase natural killer cell function (NK function is often low in ME/CFS patients). More info: LDN for ME/CFS, LDN Overview.

    • Vitamin B12 injections / sublingual tablets. Many ME/CFS patients find that high dose vitamin B12 substantially reduces the cognitive dysfunction (brain fog) symptoms. The recommended forms of vitamin B12 are: methylcobalamin, adenosylcobalamin, and hydroxocobalamin. Injectable vitamin B12 doses are around 1000 mcg three times a week; sublingual doses are 5000 mcg taken daily. Improvements in symptoms usually appear after a few weeks of taking B12. Further reading: Rationale for using vitamin B12 in CFS, Methylation, B12, Glutathione, Chelation.

    • Methylation protocol. Dr Richard van Konynenburg says that insufficient methylation is a factor behind ME/CFS, and recommends boosting methylation using supplement regimen based on the treatment program developed by Dr Amy Yasko for autism. The Health Diagnostics and Research Institute in New Jersey provide a test for methylation, as do the European Laboratory of Nutrients (see their "amino acids analysis"). More info: Glutathione and the Methylation Cycle, Simple Methylation Treatment Protocol for CFS.

    • Very low dose tricyclic antidepressants. Low doses (10 to 25 mg daily) of tricyclic antidepressants (TCA) such as amitriptyline or imipramine can be particularly helpful for ME/CFS. TCA antidepressants not only provide a mood-boosting for ME/CFS patients, they also are known to increase energy levels (though low doses are stipulated, as higher doses are usually found too stimulating for ME/CFS patients).1 2 TCAs can reduce vitamin B2 levels, so taking vitamin B2 with TCAs is beneficial, and may improve the effects of these antidepressants.1

    • Nexavir injections. The injectable drug Nexavir (formerly Kutapressin) is an antiviral, an anti-inflammatory and an immunomodulator that has demonstrated overall benefits for ME/CFS, and this drug is often employed by ME/CFS doctors, including Dr Cheney, Dr Enlander and Dr De Meirleir. Nexavir treatment protocols vary, but in one study, ME/CFS patients were given one subcutaneous 2 ml injection of Nexavir for the first 25 days of treatment; thereafter one injection every two days, for the next 50 days; and thereafter one injection three times a week for the next 105 days. This study reported a 42% remission rate in these patients at the end of this course of Nexavir treatment.1


    Dr De Meirleir reports that around 70% of his ME/CFS patients experience at least a 20 point increase on the Karnofsky scale as a consequence of taking Nexavir. Dr Enlander says that Nexavir helps about 30% of his ME/CFS patients. Nexavir is usually taken in conjunction with vitamin B12 injections.

    • Other drugs and supplements. Acetyl-L-carnitine improves mental fatigue in ME/CFS.1
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    2nd Round Tests

    This second round of tests and possible causal factors focuses on a few of the comorbid diseases and conditions that are frequently found in ME/CFS patients — in many cases, prior to the triggering factor that precipitated the ME/CFS condition (triggering factors such as an enteroviruses, herpesviruses, mold exposure, etc).


    Comorbid conditions that are statistically more prevalent in ME/CFS or fibromyalgia patients (either prior to ME/CFS onset, or subsequent to onset) include: irritable bowel syndrome, small intestine bacterial overgrowth, interstitial cystitis and overactive bladder, chronic pelvic pain syndrome (prostatitis), endometriosis, Raynaud’s disease, multiple chemical sensitivity (increased allergies), temporomandibular joint disorder, myofascial pain syndrome, attention deficit hyperactivity disorder, eating disorders, Hashimoto’s thyroiditis, prolapsed mitral valve, and Sjögren’s syndrome (sicca syndrome).1


    Some of these comorbid conditions likely play a causal role in the development of ME/CFS (though there is no direct proof of this; all we know at present is that these comorbid conditions are statistically more prevalent in ME/CFS patients).


    SECOND ROUND TESTS

    Causal Factor
    Tests and Results Interpretation

    Intestinal dysbiosis


    People with ME/CFS often have bacterial or fungal overgrowth in their intestines, and may also have some pathogenic microbial species present. These conditions may be contributing to your ME/CFS symptoms.
    Full digestive stool analysis. A digestive stool analysis will determine whether you have bacterial or fungal overgrowth in your intestines, and will determine whether there are pathogenic microbes present.





    More info on gut dysbiosis: Fermentation in the gut and CFS

    Leaky gut (intestinal permeability)


    Leaky gut is an intestinal dysfunction that can allow toxic contents of the small intestine to enter the bloodstream. Leaky gut arises from dysfunction of the tight junctions in the lining of the intestine.
    Leaky gut test (lactulose/mannitol test). The lactulose/mannitol test can detect if you have a leaky gut.




    More info:

    Fixing Leaky Gut Helps ME/CFS.

    Irritable bowel syndrome (IBS)


    IBS symptoms may include: abdominal pain and bloating; bouts of diarrhoea and/or constipation.


    Irritable bowel syndrome is a very common comorbid condition in ME/CFS and fibromyalgia.1 2 One study found 92% of ME/CFS patients, and 77% of fibromyalgia patients had IBS in their lifetime (compared to 18% for healthy controls).1
    IBS is generally diagnosed by its symptoms; there are no specific tests for IBS.





    Small intestine bacterial overgrowth (SIBO)


    SIBO is a condition in which abnormally large numbers of bacteria grow in the small intestine. SIBO symptoms are very similar to those of IBS, and include nausea, bloating, vomiting, diarrhea, nutrient malabsorption (and thus malnutrition), and weight loss. SIBO is found in 84% of IBS patients, and some hypothesize that SIBO may be the cause of IBS in these cases.1


    SIBO is a common comorbid condition in ME/CFS and fibromyalgia.1
    Hydrogen breath test. SIBO can be detected using a hydrogen breath test, which involves drinking some lactulose sugar, and measuring the hydrogen or methane gas produced by bacteria in the small intestine as they metabolize this sugar. (These gases enter the bloodstream and are expelled by the lungs, where they are detected in the breath).


    D-xylose test. Malabsorption due to SIBO can be detected by the D-xylose test, which involves drinking D-xylose, and measuring levels in the urine and blood; if there is no D-xylose is found in the urine and blood, it suggests that the small bowel is not absorbing properly.


    More info: Testing for SIBO, Labs that offer hydrogen breath tests.

    Interstitial cystitis (bladder pain syndrome) and overactive bladder


    These two conditions involve an excessive urgency, and increase frequency, to urinate. Bladder pain is involved in interstitial cystitis.1 Interstitial cystitis and overactive bladder are comorbid conditions in fibromyalgia.1 2 Research on cats with interstitial cystitis shows that they may have mild primary adrenal insufficiency.1




    Allergies or food intolerances


    Allergy or food intolerances are commonly found in ME/CFS.1 2


    Allergies or food intolerances, especially to gluten or dairy products, may exacerbate ME/CFS symptoms.





    2nd Round Treatments

    In the light of the results of the second round of tests:


    • Intestinal dysbiosis. If your digestive stool analysis test indicates bacterial overgrowth and/or the substantial presence of problematic gut bacteria, such as ..... Pseudomonas aeruginosa, Morganella morganii, Proteus mirabilis, Pseudomonas putida, Citrobacter koseri, and Klebsiella pneumoniae, then a course of antibiotics, and/or probiotics may help reduce these bacterial populations. Note that some people ME/CFS, typically those who have had this disease for a decade or more, often find their gut is too sensitive to take probiotics.

    • Irritable bowel syndrome. If you have been diagnosed with irritable bowel syndrome (IBS), note that IBS can be caused by the intestinal protozoan parasites Giardia lamblia, Blastocystis hominis and Dientamoeba fragilis, all of which are treatable. There is also evidence of bacterial infection in IBS (in that the antibiotic rifaximin can put IBS into remission for weeks).


    For Giardia lamblia, the antiprotozoal drug tinidazole is an effective treatment.1 For Blastocystis hominis and Dientamoeba fragilis treatment: see the triple drug cocktail at the Badbugs website. A two week course of rifaximin, a unique antibiotic which is not absorbed in the intestines (and so remains in the bowels), improves IBS symptoms for three months.1 Fecal transplant (bacteriotherapy) may be worth considering: it has a 58% response rate for treating ME/CFS patients with IBS.1

    • Small intestine bacterial overgrowth. If you have been diagnosed with small intestine bacterial overgrowth (SIBO), there are a number of treatment options, including: the antibiotics rifaximin, neomycin and metronidazole; an elemental diet (to starve the bacteria); and dietary treatments that reduce food sources for the bacteria. See: Treatments Strategy for SIBO. Once the the bacterial overgrowth in the small intestine is brought under control by theses treatments, it is then necessary to adopt a prevention strategy (such as an ongoing dietary treatment) to stop SIBO from reappearing. Without adopting a prevention strategy, recurrence of SIBO is common.

    • Leaky gut syndrome. If you find you have a leaky gut (intestinal hyperpermeability), this means that the potent endotoxins such as lipopolysaccharide (LPS) made by bacteria in your gut can escape into your bloodstream. LPS leaking into the bloodstream can create significant system-wide inflammation. LPS also reduces the antiviral Th1 immune response, making it harder for your body to fight off viruses.1 A leaky gut diet can help resolve leaky gut problems. Fixing leaky gut in ME/CFS can lead to clinical improvement in symptoms.1 Sometimes, complete remission from ME/CFS can be obtained by normalizing a leaky gut.1
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    3rd Round Tests

    This third round of tests focuses on rarer microbial causes and contributory factors of ME/CFS.


    THIRD ROUND TESTS

    Causal Factor
    Tests and Results Interpretation

    Giardia lamblia


    Giardia lamblia is a protozoan parasite that colonizes and replicates in the small intestine, causing giardiasis. Prior infection with Giardia lamblia predisposes to acquiring ME/CFS.1 2
    Giardia lamblia antigen test.



    Toxoplasma gondii


    This intracellular protozoan parasite, which can be caught from undercooked meat and cat feces, can cause toxoplasmosis, a mild condition that usually clears up on its own. However, Toxoplasma gondii can sometimes cause or contribute to ME/CFS. Toxoplasma gondii does not spread from person to person.


    The prevalence of Toxoplasma gondii in humans varies from country to country. It is found in around 11% of people the US, 22% in the UK, and in around 88% in France.
    Toxoplasma gondii antibodies.



    Mycoplasma species bacteria


    60% of ME/CFS patients are found to have blood infections with one or more of the following: Mycoplasma pneumoniae, Mycoplasma fermentans, Mycoplasma hominis and Mycoplasma penetrans. By contrast, such infections are detected in the blood of only 10% of healthy adults). ME/CFS patients infected with more than one mycoplasmal species generally had a longer history of illness, suggesting that they may have contracted additional mycoplasmal infections with time.1 2


    It has been speculated that Mycoplasma species may contribute to ME/CFS symptoms.
    Mycoplasma pneumoniae IgM and IgG antibodies. Dr A Martin Lerner only considers a ME/CFS patient to have a persistent Mycoplasma pneumoniae infection unless the titer is 1:600 or more (Lerner uses LabCorp for testing).1




    Mycoplasma PCR.




    Coxiella burnetii


    This rare bacterium causes a disease named Q fever, which has ME/CFS-like symptoms. Direct, person-to-person infection occurs rarely, if ever. It can be treated with antibiotics. The incubation period of Coxiella burnetii 2 to 3 weeks.
    Coxiella burnetii antibodies.

    Brucella


    Brucella bacteria can cause ME/CFS-like symptoms. This bacterium can be treated with antibiotics. Brucella’s incubation period is 1 to 3 weeks.
    Brucella antibodies.

    HTLV I and II


    If living in an endemic area, like Florida, infection with the HTLV virus is a remote possibility to explain a ME/CFS-like condition, though the symptoms of this virus take decades to appear (it has a very long incubation period).
    HTLV I and II antibodies.

    Ross River virus


    This mosquito-borne virus is only found in parts of Australia (and some other countries). This virus has been associated with ME/CFS, though most infections of Ross River virus do not produce clinical symptoms and go unnoticed.
    Ross River virus antibodies.

    Herpes simplex virus 1 & 2 (HSV)


    HSV 1 is found in 58% and HSV 2 is found in 16% of the adult population. It has been suggested that HSV 1 & 2 may play a role in ME/CFS.1
    HSV 1 & 2 antibodies. A blood test showing a HSV IgG antibody titer of 1:?? or more suggests an active infection.

    Varicella zoster virus (VZV)


    VZV is the virus which causes chickenpox. VZV may be linked to ME/CFS (it has been hypothesized that some cases of ME/CFS may be caused by the reactivation of VZV in peripheral nerve ganglia).1
    VZV antibodies. A blood test showing a VZV IgG antibody titer of 1:?? or more suggests an active infection.




    3rd Round Treatments

    In the light of the results of the third round of tests:


    • Giardia lamblia infection. If you tested positive for Giardia lamblia infection, then ....

    • Mycoplasma infection. If you have a Mycoplasma infection, macrolide and tetracycline classes of antibiotics (such as azithromycin and doxycycline) are effective treatments. For healthy people, two or three weeks treatment is required; longer treatment is usually needed in chronic illness like ME/CFS.1


    Dr A Martin Lerner treats Mycoplasma pneumoniae infection in his ME/CFS patients with intravenous doxycycline 150 mg for six weeks, followed by oral doxycycline 100 to 150 mg twice daily or moxifloxacin 400 mg once daily for three months.1

    • Varicella zoster virus infection. If you have an active infection with varicella zoster virus, then the supplement L-lysine (1000 mg twice daily) may be useful.

    • Herpes simplex virus infection. If you have an active infection with herpes simplex virus I or II, then the supplement L-lysine (1000 mg twice daily) may be useful.1
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    4th Round Tests

    This fourth set includes rarer causes/contributory factors of ME/CFS.


    FOURTH ROUND TESTS

    Causal Factor
    Tests and Results Interpretation

    Jaw bone infection


    Cases of ME/CFS have occasionally been caused by bone infections (osteomyelitis) inside the jaw bone. Such infections can develop inside jaw bone cavitations (the hollow pockets in the jaw bone left after a tooth extraction).


    Further info:

    My recovery from CFS due to osteonecrosis of the jaw

    My recovery story

    I think I put the puzzle together
    Jaw bone infections can be very hard to detect, as they often cause only very minimal local symptoms. Yet a local infection in the jaw bone can cause symptoms identical to ME/CFS.


    A simple test for jaw bone infection is applying pressure to jaw bone with a finger; if any area feels painful, this indicates a possible bone infection.


    Jaw bone infections will usually not show up on X-rays. However an MRI can detect jaw bone infections. Ultrasound and thermal imaging cameras can also be used to help detect a jaw bone infection. A handheld device called the Cavitat scanner can detect infections hidden within the jaw bone.


    Jaw bone infections come under the category of focal infections, which are defined as infections localized in a small region of the body. Focal infections within the tonsils may also lead to fatigue symptoms.


    Dr Graeme Munro-Hall and Dr Lilian Munro-Hall are UK dentists that specialize in treating jaw bone infections.

    Sinusitis (sinus infection)


    Sinusitis can cause chronic fatigue, and so conceivably sinus infections may worsen ME/CFS.1


    Patients suffering chronic fatigue (but not proper ME/CFS) due to obstructive sinusitis have reported significant improvements in fatigue after undergoing sinus surgery. The improvements are likely to derive from the easing of sinus inflammation after surgery.

    Further info:

    Sinus surgery can improve chronic fatigue


    Lymph fluid obstruction/stagnation


    Some patients with ME/CFS have improved, and some have even been cured, by massage that circulates lymph fluid. Thus lymphatic congestion and/or dysfunction in the thoracic duct which pumps the lymph fluid may be a factor in underpinning ME/CFS.


    Further info:

    Perrin Technique
    Testing for lymph flow obstruction. Raymond Perrin, a osteopath who has developed lymph massage techniques to treat ME/CFS, found that his patients have a sore and tender spot just under the third rib on their left side. The presence of this soreness indicates a lymph flow stagnation. To test this spot in yourself, press your fingers into a point around 2 cm above and to the left of your left nipple; if there is soreness or tenderness at this point, this indicates to Perrin that there is a lymph flow blockage.


    Perrin theorizes that lymph stagnation prevents proper cerebrospinal fluid drainage, thus creating a toxic build-up in the central nervous system that underpins or contributes to ME/CFS.1

    Physical trauma (eg: car accident)


    Physical trauma such as a road accident or a fall can precipitate fibromyalgia and ME/CFS, particularly if a head or neck injury is sustained (such as whiplash or concussion).


    Further info:

    Chiropractic and ME/CFS
    Fibromyalgia and ME/CFS can appear immediately after an accident, or begin to develop over the subsequent months.


    The mechanisms that precipitate fibromyalgia and ME/CFS after a physical trauma producing anatomical damage or misalignment are not clear, but it is easy to hypothesize that causal factors may include anatomical misalignment restricting lymph flow from the head and through the neck; or anatomical misalignment pinching on the vagus nerve.1 2 Note that trauma to the spine can sometimes cause a syringomyelia to later form in the spinal cord, which may result in ME/CFS-like symptoms. Syringomyelia can be treated surgically.

    Temporomandibular joint dysfunction (jaw misalignment)


    Temporomandibular joint dysfunction (TMJD) is an inflammation and misalignment of the temporomandibular joint (the joint which connects the jaw bone to the skull). TMJD can cause symptoms similar to fibromyalgia and ME/CFS.


    More info:

    Recovery from CFS using oral orthotics
    Temporomandibular joint dysfunction can be diagnosed by dental professionals.


    One theory on how jaw misalignment precipitates fibromyalgia-like symptoms relates to a compound called substance P. Substance P is normally raised in fibromyalgia patients (but not in ME/CFS patients) and some believe it may play causal role in fibromyalgia. Now, higher levels of substance P are also found in TMJD patients. Substance P is released into the cerebrospinal fluid when the trigeminal nerve (which runs through the lower jaw) is stimulated. So substance P, originating from TMJD, offers a possible explanation of how TMJD might trigger fibromyalgia-like symptoms, and may explain how treating TMJD can lead to remission from fibromyalgia.

    Silicone breast implant


    Silicone used for breast and other implants, as well as silicone injections, can in rare cases cause an ME/CFS like illness, as well as autoimmune conditions. Silicone is known to affect the immune system (silicone is used as an immune stimulating adjuvant in vaccines for this reason).


    More info on silicone illness here.


    Hepatitis B vaccination


    In VERY rare cases, ME/CFS is triggered by hepatitis B vaccination (and this is usually a rapid onset: that is, the symptoms of ME/CFS appearing almost immediately after the vaccination).











    4th Round Treatments

    In the light of the results of the fourth round of tests

    • Jaw bone infection. If you suspect you may have an focal infection within the jaw bone, you need seek help from a knowledgeable dentist, but these are hard to find. More info here.

    • Lymph flow obstruction. If you think you may have a lymph flow obstruction, you may wish to try the Perrin Technique, which improves lymphatic and cerebrospinal fluid drainage using osteopathic massage and manipulation. Patients also follow a massage and exercise routine at home, involving spinal twists (Perrin twists) which manually activate the thoracic duct (the body's main pump for lymph fluid).

    • Physical trauma. If you think your ME/CFS or fibromyalgia may be due to a physical trauma, such as a car accident that involved a head or neck injury, physical therapy spinal manipulation such as cranial osteopathy or chiropractic may yield benefits.

    • Temporomandibular joint dysfunction. If you have fibromyalgia-like symptoms, and you have been diagnosed with temporomandibular joint dysfunction (jaw misalignment), consider treating this, because it may help improve your fibromyalgia-like symptoms too.
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    ME/CFS DOCTORS AND CLINICS

    USA

    Dr John Chia (Torrance, California)

    Dr Chia is an infectious disease specialist with special interest in enteroviruses (which include coxsackievirus B and echoviruses), and is the leading researcher in enterovirus-associated ME/CFS.


    Dr A Martin Lerner (Oakland, Michigan)

    Dr Lerner is a leading researcher in ME/CFS associated with herpesvirus and used antivirals to treat these infections. He also has particular interest in the cardiac problems and insufficiency often found in ME/CFS


    Dr Jose Montoya (Stanford University, California)

    Dr Montoya is a leading researcher in ME/CFS associated with herpesvirus such as HHV-6, EBV, cytomegalovirus, and uses powerful antivirals to treat these herpesviruses where appropriate.


    Dr Daniel Peterson (Sierra Internal Medicine, Nevada)

    Dr Peterson is a very experienced ME/CFS doctor and researcher, and has a special interest in natural killer cell functioning in ME/CFS.


    Dr Paul Cheney (Asheville, North Carolina)

    Dr Cheney is an innovative doctor and researcher using leading edge medicine to treat ME/CFS.


    Dr Nancy Klimas (Miami, Florida)

    Dr Klimas is a ME/CFS doctor and researcher who runs a ME/CFS clinic. She has significant experience in using immune modulators for treating ME/CFS.


    Dr Charles W. Lapp (Charlotte, North Carolina)

    Dr Lapp runs clinical trials for drugs for ME/CFS and fibromyalgia, and has been using ampligen for ME/CFS.


    Dr Derek Enlander (New York)

    Dr Derek Enlander uses immune modulators for treating ME/CFS.


    Dr Garth Nicolson (Huntington Beach, California)

    Dr Nicolson works with ME/CFS, autoimmune diseases, Gulf War illness, and the infectious causes of autism and neurodegenerative diseases.


    Dr Daniel Dantini (Ormond Beach, Florida)

    Dr Dantini uses antivirals (famciclovir and valacyclovir) for herpesviruses in his treatment of ME/CFS where appropriate.Dr.


    Dr Andreas M. Kogelnik (Mountain View, California)

    Dr Andreas M. Kogelnik is an infectious disease doctor, and an ME/CFS specialist and researcher.



    UK / Europe

    Dr Sarah Myhill (Powys, Wales, UK)

    Dr Myhill is GP with significant experience of CFS, and has a website from which various lab tests can be ordered and interpreted by Dr Myhill.


    Breakspear Medical Group (Hertfordshire, UK)

    Breakspear focuses on allergy and environmental illness. For ME/CFS treatment they use antivirals, gammaglobulins for parvovirus, and test and treat rickettsial and bacterial co-infections.


    Dr Kenny De Meirleir / Red Labs (Belgium)

    Dr Kenny De Meirleir is a ME/CFS doctor and researcher who runs a ME/CFS clinic in Brussels with a particular focus on the intestinal dysfunction and intestinal dysbiosis of this disease.
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    Interesting what you say about sinus surgery as I have been told I may well have to have SMD, septoplasty and outfracture of the turbinates.

    At this stage I don't feel I fit the criteria for CFS.

    * Light - Moderate Exercise does not worsen my condition now and helps psychologically
    * Cortisol levels are now at a good level (not chronically depressed)
    * Alchohol improves symptoms
    * Sleep cycle not pushed back
    * No muscle aches pains.

    I've also had pretty comprehensive testing as you'll see throughout the thread.

    Main symptoms:

    * Fatigue with perhaps more emphasis on metal fatigue. Poor memory, poor reasoning etc
    * Low mood
    * No libido
    * Dry / Gritty / Photophobic right eye. Floaters also present - most pressing symptom. Very severe.
    * Sinus congestion. Not too bad throughout the day but wake in the night dehydrated and inflammed sinuses at 4-5 every time. Pint of water eases symptom and get back to sleep.
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