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Sean's very un-optimal Journal

Discussion in 'My Optimal Journal' started by seanb4, Aug 15, 2013.

  1. notsoperfick

    notsoperfick New Member

    I am so disappointed that you are still struggling Sean. Anyway, if you are in the market for a book that might shed some light on your heart, perhaps think about reading this one - https://www.amazon.co.uk/Human-Heart-Cosmic-Understand-Cardiovascular/dp/1603586199 Dr. Tom Cowan is a very interesting and thoughtful physician who has spent years researching the heart. His ideas are definitely not mainstream, yet, but he has support for his theory that the heart is not a pump as is wisely accepted, look up also Dr. Branco Furst. Dr. Cowan has a website too if you didn't want to buy the book just yet.
    seanb4 likes this.
  2. seanb4

    seanb4 New Member

    Thanks @notsoperfick

    Funnily enough I came across Dr Cowan 2 months ago, I am currently taking ouabain however cannot tolerate it with my gut so use it sublingually.

    I find it helps a little. I am going to try swallowing some bit by bit to try and build tolerance.

    I think he's right however my situations abit different. It's both arms of the sympathetic system that are out of whack.

    Have you tried it?
  3. notsoperfick

    notsoperfick New Member

    No I haven't as yet. I've had a few months respite with my arrhythmia which I am hoping was responding to my taking hawthorn and potassium. When I ran out of potassium it started to come back so I bought some more. It was the recommendation of a cardiologist but I can't for the life of me remember who. Oubain is a remedy from way back that works exceptionally well but was of course another victim of the rise in pharmaceutical prescriptions, Dr. Cowan uses it a lot.
    seanb4 likes this.
  4. seanb4

    seanb4 New Member

    If your issues pop back up I'd give it a go.

    I got it from http://www.strophantin-shop.com/

    I also find transdermal magnesium to be helpful...
  5. notsoperfick

    notsoperfick New Member

    Hoping you're doing ok Sean. If you're able, an update would be great. I'm not experiencing much arrythmia these days, apart from when I'm a bit stressed and curiously often at night when I've been dreaming! Goes off with some breathing exercises.
    seanb4, Jude and caroline like this.
  6. seanb4

    seanb4 New Member

    I got results from beta adrenergic and muscarin receptors antibodies test. All negative however M3 was significantly higher than the other 5 (very low) and just outside at risk threshold. M3 is responsible for gut (gastroparesis) and blood vessel (pots) smooth muscle contractions as well as secretion of saliva (dry mouth). I think this means antibodies are the problem , next step is to test alpha adrenergic 1.

    Something happened in february where I noticed a small but significant bump in health. I suspect from helminthic therapy or TUDCA. I will know soon and pursue that lead.

    Read polaks book, the vital question and life on the edge.

    Visited pots doctor and nurse who are supposed to be specialist in pots, their knowledge and advice was embarrassingly bad.
    Jude and caroline like this.
  7. caroline

    caroline Moderator

    Thanks Sean for the update ....looks like you are making some progress. keep going.....
    seanb4 likes this.
  8. seanb4

    seanb4 New Member

    @SatoriHeart Thanks, for the detailed response.

    My mental status anxiety wise is fine, I only experience anxiety when my symptoms are at their very worse however this is only natural. My mood is low but not unaturally so given the circumstances. My concentration is not good, I need to read things multiple times etc, and doing complex thinking is harder.
    As far as I am aware no mercury exposure.
    I have my23andme however am unsure what snps you want me to look at for liver detox, if you let me know I will post results.
    I have varied my diet quite a bit however atm I am eating higher carb (rice, OJ etc) and meats like corned beef, pork, chicken, fish. I think pork contains sulfur.
    Unfortunately the last blood results I have are from 2014 and are at my old house, I am at my parents.

    I had not measured it however have grown accustom to taking my pulse with my fingers over the years and can measure up to around 150bpm quite acurate (as measured by cuff) however my heart was going insanely fast when I tried measuring it and I felt absolutely awful. When I got home and sat back in chair heart settled somewhat and I felt very relaxed (most had been in years). I think my vagus nerve had been activated to normal amounts however my circulation system has immense trouble circulating blood in this condition, probably due to aA1 issues although I cannot be sure...
    I have had my heart rate recorded on tilt table test and it went up to 160+ on standing. I am on mirtazipine and propanolol and this has been a huge help in controlling my heart rate and beat strength. This could work by increasing norepinephrine (mirtaza) which increases activation of aA1 (good) and bA1&2 (bad) however propanolol negates the increase in bA1/2. So monitering my heart rate isn't as important now however blood pressure is as it swings from low to high and I feel worse with this.

    I don't think it falls into panic attack as the only time I feel anxious is when I am feeling the heart attack like symptoms which thankfully is very rare now. It is more like intense fear than panic, feeling of impending doom like I'm going to die in the next few seconds/minutes. This however has only happened 3 or 4 times.
    I do feel you are right in that my sympathetic system is constantly activated and this puts me in a state where it is difficult to relax however it is not anxiety I feel, it's more like my mind is always on like ADHD even though I'm tired.
    I have had doctors again and again tell me my symptoms are anxiety or hypochondria however I have thouroughly been down this route and it is not the case. I know you are saying there is a physical component to it however I do not feel anxious. I have trouble meditating whereas before I got ill I found it much easier. I think it's more constanly alert. I believed this is directly tied to my symptoms like you say.

    Yes I will for now as I await to see if my helminthic therapy experiment is a success or not.

    I am not so sure this is true. There have been a couple of studies done showing POTS patients having increased antibodies in these receptors and by communicating with others on a different forum I have found that they too are positive for antibodies against these receptors.
    I also read a study somewhere that found patients that had normal levels of antibodies with POTS that had there antibodies lowered through some drug found improvement in symptoms.
    I have elevated (compared to the rest) antibodies against M3 which is directly related to some of my worser symptoms. Whilst I don't have a postivite result, I think the idea is worth pursuing. I just wish I could afford the damn aA1 test...



    The vagus nerve thing is very interesting however I have had the same thought as you early on. I was convinced it was h pylori with the low stomach acid and ulcer at the time this all started however I have had the stool test that you have seen and another one ages ago done specifically to check for it, both negative. I then read more and became aware that it can escape detection so I tried all sorts of things, mastic gum, broccoli extract, pepto bismol followed by some combination of h pylori killer, and much more that I cannot remember. None of them helped forcing me to drop that line of thought. It could still be something to do with h pylori but I have no test to confirm and a bunch of treatments have done nothing so I feel I have exhausted the area for now. My lack of stomach acid could be antibodies against M3 as it is responsible for gastric secretions.

    Yes I think that is the best place to look, autonomic dysregulation due to infection.

    It was done years ago but some things, FODMAPS, GAPS, fasting, colostrum, l-glutamate (???), cabbage smoothies, other supplements, lots I cant remember. Like I said I did have one off success with FODMAPS so there is something to it at the very least contributing to immune system overwhelming...
    Jude likes this.
  9. seanb4

    seanb4 New Member

    @Penny Yes I've quoted it in the original post, if you click the quote it expands however I have no idea how to decipher is and what relevance it has...
  10. Jude

    Jude Gold

    Sean..sooo good you have Satori to brainstorm with:)
    seanb4 likes this.
  11. seanb4

    seanb4 New Member

    Couple of small significantly things.

    I have been really struggling with heat particularly over the last year. I was outside on a nice day this saturday and by 10am I was already overheating (this is april at the 53rd latitude), not sweating and my POTS symptoms were acting up big time. So I decided to see if water helps. I forced myself to drink 500ml and suddenly I started sweating and my heat tolerance improved greatly as did POTS symptoms. Problem is I have to keep this up throughout the day and with gastroparesis this isn't so easy, and I am having to maintain this through a caloric defecit, however this is MASSIVE for me. It seems I can tolerate the sun far better than I have in recent years, hopefully this will keep up through summer.

    I also suspect that this will help my absorption of light along with keeping my skin very clean and the light does feel different, better, on me, like it's having a greater effect. This holds promise.

    I suspect the reason is low aldosterone, or something similar. Strange as I never feel thirsty / hungry / nor crave salt. I think this is because gastroparesis is mucking up my feelings by constantly making me feel full and sick. I have read that POTS patients can have really low blood volume and I have suspected this a while in me. With the constant hydration my POTS symptoms are better however it would be better if I wasn't peeing constantly and not having to drink all the time as then I could eat more.

    I did experiment with licorice root extract whilst in hopsital for this problem however one dose made my symptoms much worse for days/weeks. I'm now thinking I took too much however am atm very hesitant to try again.

    Also I recnfirmed for the 3rd time the benefitial effects of 810nm light. I had not been using my vielight for a few weeks now as it run out of battery and I thought the quantlet was just around the corner. However this was not the case so I recently got a new battery for it and use it before bed, BOOM, ever since then, significantly improved sleep (still not great though). This only makes me more eager to try the quanlet and see how much of an impact it can have.

    Future is starting to look a little brighter. Ever since my stint in hospital made it clear to me that the stomach ulcer wasn't the cause of all my symptoms and it was in fact the tonsilitus, I feel I'm slowly making progress...
    Jude and caroline like this.
  12. notsoperfick

    notsoperfick New Member

    Wow Sean, you've certainly been on a journey which finally seems to be leading you to a solution, I so hope it does. I can't pretend to understand a lot of what you've included but I admire your tenacity. I'm looking forward to your post that starts, "finally ..." with a big smiley.
    seanb4 likes this.
  13. seanb4

    seanb4 New Member

    Yes, this is more plausible than antibodies theory.

    Yes, I read this in your journal and it prompted me to check my hands and sure enough they do it when symptoms are worse. This backed up my findings on sweating and water. Water intake somewhat helps both these issues.

    I have had much trouble with high fat due to gastroparesis. I pushed through the first ~5yrs on it but as symptoms worsened I backed off. Wieght is better high fat, gastroparesis is less servere high carb.

    Also I wouldn't recommend reading my whole journal as only recently am I getting somewhere.

    Yes I am being sold on this. I think my problem is virus messing up gut flora and potentially lodging in the vagus. Any other problems are downstream of this.

    I have a test result although it's not convincing. All negative for beta adrenergic 1 + 2, mucarinic 1-5. However I did have significantly higher levels on M3 which is more specific to my problem. You are convincing me more and more that this is very secondary and should not be the focus of my attention...

    I will try these things when quantlet arrives, hopefully soon...

    Very interesting article. I agree that the pyramid he is talking about is causing both my physical and mental problems. However my understanding of anxiety is a fear or worry about something. I am not worried or fearful 99% of the time. 1% when my symptoms are worse. However the vast majority of the time I find relaxing very difficult (mind always on like ADHD, cannot meditate without great difficulty, just never feel relaxed) which I believe is caused by my physical problems. I know what anxiety feels like, and I'm not experiencing it.

    What you are telling me in these posts and what I am also reading is leading me to shift focus. I need to sort out the gut flora, strengthen immune system, and expel virus.

    Gut flora = Clean eating, fasting, antimicrobials, Helminthic Therapy

    Immune = Light, antivirals

    I have tried many of these things before without much success however a combination maybe key.

    This maybe worth a shot. Money is very low and no income.

    My current strategy is experiment with quantlet and get as much summer sun as possible.

    Soon add 10 Necator Americanus. (The original 5 seem to have helped probably through reshaping gut flora)

    ... then add the above antimicrobials...
  14. JanSz

    JanSz Gold

    Looks like you are benefiting from even short lasting hydration.
    My guess is that you should benefit from small amounts of AHD (Vasopressin)
    There is a nasal spray Desmopressin.
    seanb4 likes this.
  15. Mito1

    Mito1 New Member

    yep - the only reason ADH is out of wack is mold. Easy peasy. Fix the mold and ADH comes back.

  16. JanSz

    JanSz Gold

    Good to know about desmopressin and increase of blood pressure. Thank you.

    I am going thru rather successful hack and think that it may help @seanb4
    Details are important part of it.

    After my Green Laser Prostate therapy eventually I ended up with going to bathroom about every two hours or less.
    At night that sometime can be stretched to 3 hours.
    That means that I have to go to bathroom 2 sometimes three times over my 8 hrs sleep time. Broken sleep time, ng.
    Nobody can help me with that (but me).
    Few years ago I came to think that I have to try Desmopressin.
    Asked doctor for script, he wondered by obliged.
    My hack did not worked then. One spray to the nose of Desmopressin made me bloated, I gained few pounds of weight, newer tested BP, possibly was high.
    Fast forward to March 2017.
    Different story with same Desmopressin.
    The one I was using before had 10mcg in one spray.
    Now I am dealing with
    0.83 mcg per dose or 1.66 mcg
    I am using the same Desmopressin (5 or 6 years old) but it is diluted.

    It is a work in progress.
    0.83 have not done anything.
    With 1.66 with I can sleep now 7hrs, go to bathroom then sleep my last hour.
    Eventually I will increase dose little bit more, but it is highly promising experience.

    If interested there is more details in attached file.
    There is little problem, I have new bottle of Desmopressin but use old one.
    Reason, old have a top that can be unscrewed, new does not. I have already idea on how to get it out (gracefully)
    So far the old one works so I leave that problem for latter.
    Picture shows old version.
    For the new bottle of Desmopressin I paid $40 (with insurance help)
    When the new diluted version of Desmopressin become available, called Noctivia, (10x diluted) they will likely charge more or just $40. I think I will continue asking for the old one, why spend $400 if $40 is doing the work.

    .. upload_2017-5-12_9-53-33.png

    Attached Files:

    Last edited: May 12, 2017
    seanb4 likes this.
  17. seanb4

    seanb4 New Member

    I tried about 5-10g L Glutamine yesterday and it resulted in insomnia and a worsening of palpitations. I'm sure this is caused by glutamate. Maybe getting into brain through permeable bbb. Exacerbated by COMT and MOA mutations.

    Maybe I can counter this with taurine/NAG/lithium doses however I feel this is going down the wrong, expensive path.

    @SatoriHeart What do you think of high dose bovine colostrum?

    In the meantime I will continue on with helminthic therapy and the other supplements satori had success with.
  18. seanb4

    seanb4 New Member

    I've been doing some thinking. This all started with bad tonsilitus and NSAIDs. Looking at the different viruses and bacteria that can cause tonsillitis, these interested me; Group A Streptococcus, Epstien Bar. I figure that when I gave myself an ulcer with NSAIDs, I also destroyed my gut lining long enough to allow Strep to settle in gut/get in blood stream, or allow EBV easy passage into blood/gut.

    I'm trying to find a site or study to compare my Strep levels with gen pop. Mine are 0.46% relative abundance.

    My gut PH was a little too low last test I had (6.0 [6.1-7.0]) indicating this could be an issue for me.

    I get lactic acid build up very quickly from minimal exertion. I previously put this down to my body having difficulty pumping blood however maybe its lactic acid in the blood.

    Different Streps are noted in additional bacteria as well, unsure of significance.

    Interestingly no growth for Lactobacillus.

    It will be interesting how these results line up with the upcoming uBiome results.
  19. seanb4

    seanb4 New Member


    EBV/HHV6/whatever gets in my throat causing tonsilitus, I destroy my gut lining with NSAIDs, path to blood/vagus nerve is wide open. Virus lodges itself in a difficult place (or in everywhere, muscles, gut, verves, blood, stomach,etc) and releases nagalase to comprimise GcMAF/immune system. Virus cause gastroparesis via antibodies or messing in the vagus nerve. Gastroparesis ruins gut flora. Immune system has to work overtime fighting virus and endotoxins from compromised gut, whilst being chronically weakened by the viruses nagalase release. Hormones get depleted, health goes to shit.

    Need to eradicate virus in a way in which it will not just come back as seems to be the problem in treating most post viral diseases.

    Ideally, get hormones such as DHEA, Cortisol, etc in check. Do this with strong light (UK not strong enough, artificial?), healing gut. Gut is constantly comprimised due to gastroparesis. Need to get rid of paresis first. Suppress virus long enough to restore good digestion? GcMAF (too expensive), liposomal glutathione (maybe bad with low redox), strong antivirals (valaciclovir, andrographolide[https://www.ncbi.nlm.nih.gov/pubmed/18981566]), monolaurin? First need to find out which viruses are responsible...
  20. JanSz

    JanSz Gold

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