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A combination of mild cases of mitral valve prolapse, connective tissue disease

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by incoggg, Dec 26, 2012.

  1. incoggg

    incoggg

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    A combination of mild cases of mitral valve prolapse, connective tissue disease, dysautonomia, and hyperhidrosis?

    Hello, everyone! First of all, thanks a lot for all the useful information you post here!

    I read a lot of articles on the website, but decided to post here because I hope that somebody could give a more personalized advice or direct me to some other great resource.

    It seems that I have a combination of very mild cases of the following: mild cases of mitral valve prolapse with underlying connective tissue disease, and perhaps(!) some dysautonomia / hyperhidrosis?


    1. Mitral valve prolapse
    I have been diagnosed with Mitral Valve Prolapse about half a year ago. Aside from that I'm health 27yo guy, training couple times of week, mostly eating paleo.

    All my blood numbers are fine (including HDL, LDL, etc). The only exception is blood viscosity which is higher than norm.

    I've been suggested by cardiologist to take fish oil + magnesium + small doses of aspirin for limited time.

    Which is not very helpful as I've been supplementing with fish oil for a long time, started magnesium about half a year ago (now trying to all -ates: citrate+orotate+aspartate) and as I don't really want to take aspirin.

    I also supplement with a strong multi (including folate, K2, D3, etc, etc) + additional D3.
    I also cycle creatine and sometimes L-glutamine & Whey. Several of months ago I also started experimenting with L-Carntinine / Acetyl L-Carnitine and CoQ10.

    So, typical supplements recommended to those with connective tissue dysplasia are:
    Magnesium, L-carnitine, Q10, potassium orotate (but according to my cardiologist it will have negative effect in my case).

    I experiment with these now.

    Somewhat more controversially beta-blockers (don't want to take them), inosine, SSRi, Corpus vitreum and Growth Hormone are recommended also.

    The problem is that there are so many variables it's nearly impossible to come up with exact day-to-day plan of supplementation with exact dosages as most of these supps are probably useless to me. I would be really greatful if you could suggest something or maybe recommend a completely different out-of-box approach.

    Also, interestingly enough, according to Curetogether.com (which has 600+members reporting their experiences with MVP), 5 most effective treatments are:

    1. Avoiding caffeine; (always loved it, but probably should give it a try)
    2. Air conditioning; (love it!)
    3. Diet modification; (which exactly, I wonder?!)
    4. Avoiding stimulant herbs (which exactly, I wonder?!)
    5. Benzos (xanax, klonopin) (don't want to use any hardcore meds without a strong need)
    _____________

    All other diseases mentioned below are only assumed, not diagnosed. I have minor symptoms that make me think I'm likely to have them. Here is the list.

    2. Connective tissue disease
    I've researched on the topic and discovered that this issue is usually related to connective tissue dysplasia which is the problem with collagen synthesis.

    I think this might be my case, as I also have a mild version of pectus excavatum (pigeon chest - however, it is mild, so it doesn't influence organs' or hearts' positions), small liver hemangiomas, and non-existent earlobes. As funny as it might sound, I can also twist my tongue. All the above-mentioned are associated with connective tissue disorder.

    Other symptoms are:
    - sometimes I get a brain fog with no particular reason
    - mild anxiety/irritability from time to time (which is very irritating as I manage my emotions pretty well and I am usually upbeat, but I hate it when I'm not feeling well for no reason at all)
    - very very rare occasional mild heart palpitations before bed (I just can feel it, but it doesn't prevent me from falling asleep quickly)

    But aside from that, I don't have any manifestations of connective issue problems: my joints have been perfect my whole life.

    Symptoms certain seem to come and go. Sometimes I have weeks in great mood and of great performance, but sometimes I feel "down" several days in a row. What usually helps best in this case is getting lots of sleep and working out.

    _____________

    3. Dysautonomia / Hyperhydrosis
    Dysautonomia often goes together with MVP. But it seems that the only Dysautonomia-specific symptom I have is that I sometimes get cold hands (only hands), and sweaty armpits for no reasons.

    Also, I sometimes get sweaty hands which happens especially often when I travel. It's sometimes also accompanied by clogged nose. This is very irritating. It's also confusing because I love travelling and have no fear of plains whatsoever.

    _____________

    Lifestyle, background

    Overall, I have a very active lifestyle. I have a demanding full-time job in a multinational corporation, run my own entrepreneurial projects, on the side and train hard (weightlifting) about twice a week, do yoga about once a week / once a couple of weeks.

    I sleep about 8.5 hours on average (it's not time in bed, but the actual sleep I get, measured by Zeo): about 7-8 on weekdays and about 9-10 on weekends. Yes, I need a lot
    Basically, I enjoy having an active lifestyle and want to be able to maintain it. I usually feel the greatest after a very tough workout or yoga session.

    I eat a kind of high-carb version of Paleo diet (lots of meat, fish, veggies, fruits, berries, potatoes, rice, etc).

    All my bloodwork is fine. Not only typical things (blood sugar, etc), but also hormones (Testo, free testo, estradiolm progesterone, SHBG, T3, free T3, T4, free T4, insulin, adreanaline, nor-adrenaline, cortisol, serotonin, growth hormone).

    I also have Tourette's (manageable), so I decided that methylation analysis might be helpful. So,I've also analysed my 23andme methylation genes. Here is what I've found:

    [​IMG]
    I would really appreciate it if you could help me with analysis and creation of supplement regimen!
    _____________

    Questions:
    1. Which of the typically suggested lifestyle modifications, supplements and dietary changes are more/less likely to be relevant in my case, based on you experience? I really want to manage it by myself and naturally. So this is the THE MOST IMPORTANT question.2. Can you recommend a doctor that can be helpful in my particular case (who specializes in the things I mentioned)?
    3. Is there any chance to get a consultation with some great doctor online (via Skype for example)? The problem is that I'm living outside of US. Although I might consider travelling, it would be great to talk to do all the blood-work locally and get consultation remotely.
    4. Should I care seriously about getting the proper diagnosis for other things aside from MVP taking into consideration that my symptoms are mild? What would be the optimal way to go about it?
    5. What would be the best way to customize my approach? In other words, figure out what particular connective tissue problem I have, what exact type of collagen, etc?
    6. Can you recommend great books/blogs/articles?
    7. Are there any other ways in which 23andme can be utilized to get some additional insights?
    8. If you have a similar set of symptoms, should we probably speak in person via personal messages to share information?
    9. Am I missing anything important?

    Thank you very, very, very much!
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Albuquerque
    Hi incogg,

    Welcome to the forum!

    The comprehensive background you posted is interesting. A methylation panel would tell you how your methylation is actually functioning and might be useful. It is available here:

    http://www.europeanlaboratory.nl/

    They have branches in the Netherlands and in the USA, but you can FedEx your blood from other countries. What country are you in? That might help others give feedback as we would get some idea of the resources you have available.

    It is hard to narrow down the suggestions you have been given as treatment response is so individual. I have all the conditions you mentioned -- including hypercoagulation as tested by the ISAC panel. I took heparin injections for many months and use nattokinase (a hefty dose) for maintenance. This was helpful.

    There is a lot of information on Ehers-Danlos syndrome on the web, including useful guides for self diagnosis.

    Some doctors might be willing to use Skype but there would be legal implications in some countries--i.e. they may not be able to treat you on the basis of a Skype consult.

    When you log into Phoenix Rising, you might want to also log into chat (lower right hand corner of the page) so that people could share more with you.

    Best wishes,
    Sushi
    merylg likes this.
  3. merylg

    merylg Senior Member

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    Sydney, NSW, Australia
    Hi incoggg,
    I have similar issues, including mild mitral valve regurgitation/heart murmur and some yet-to-be-defined connective tissue disorder. It seems like you have a good grasp on available treatment strategies. Like you I am interested in this whole area. I have a conflict with aspirin too. It really helps with my circulation, especially to brain & if I have a migraine. I am mindful of it's downsides...bleeding risk, stomach/gut damage/ulceration, damage to mitochondrial function, delayed effect of salicylate sensitivity breathing difficulty, nasal polyps & exacerbation of tendinitis in my case. This is why I cannot consider continual use of even low-dose aspirin.

    There are some other threads here that may interest you, where we are discussing connective tissue disorders:

    http://forums.phoenixrising.me/index.php?threads/underlying-connective-tissue-disorder.20020/

    http://forums.phoenixrising.me/inde...-ehelrs-danlos-syndrome-stretchy-veins.20351/
  4. incoggg

    incoggg

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    Thank you very much! I doubted anybody is going to read it :) I'll take a look at the link you provided.

  5. incoggg

    incoggg

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    Thank you very much for links and information!

    Nattokinase certainly looks interesting. Can you tell me how exactly did you figure out the right dose for you?

    Thank you!

  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My doctor was working with Dr. David Berg who did a lot of study of hypercoagulation and ME/CFS. (http://www.hemex.com/). It was Berg who developed the ISAC panel at Hemex. My doctor followed Dr. Berg's dosing suggestions. Some here use lumbrokinase instead of nattokinase and it is probably better but a lot more expensive. http://en.wikipedia.org/wiki/Lumbrokinase

    Sushi
  7. Allyson

    Allyson Senior Member

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    Australia, Melbourne
    not read all @incoggg g but recently read that MVPS is now thought t be the same thing as EDS


    ALly

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