Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Long-term daily mHBOT and full recoveries w/ ongoing maintenance

Discussion in 'General Treatment' started by Jesse2233, Sep 4, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    Good luck! I'm starting next week as well
     
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  2. Jesse2233

    Jesse2233 Senior Member

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    My sense is that they're generally safe but that accidents can occur with misuse or due to defects
     
  3. Laurajnyc

    Laurajnyc

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    I'm so glad I found this thread. Hyperbaric is making me well. I am so happy to have found something. I have had around 50 sessions. I'm well enough that I'm backing off a little. Hoping to get down to 10 sessions a month and then 5 sessions (maintenance) a month. Very expensive here in NYC. My pressure is 2.0.
     
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  4. Jesse2233

    Jesse2233 Senior Member

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    That's great @Laurajnyc

    What was your functionality level like before, what's it like now, and how many sessions before you saw results?
     
  5. Laurajnyc

    Laurajnyc

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    Hi Jesse,
    I was very sick. I felt ill all the time. I had a home health care aide. Taking a shower took enormous energy. We had stopped socializing.
    I had 10 sessions. 1 hour a day for 2 weeks at a pressure of 1.5. I ran into the director of the facility and I told him that I felt like I had an ongoing, systemic, bacterial infection. That I wasn't just tired, I felt ill. He said that he had been treating me for PSTD and inflammation which is treated at the lowest pressure of 1.5. So he changed my pressure to 2.0. That made all the difference. 45 minutes into my session I felt a tiny bit better. Then there was slow improvement over the 6 or so weeks. I don't feel ill anymore. I'm not 100%, but very good.
    I recently added phosphatidylserine. I can't take it every day because it makes me too sleepy, but I think it was an important addition.
    other things
    b12 shots 1x per week 1mg
    b12 topical cream - methylcobalamin
    D3 - 4000mg
    C - 1000mg
    B2 activated
    B6 activated
    B5
    Gylcine
    Iron
    Supplements made me feel a little better. They are important, but they didn't make me well.
     
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  6. Jesse2233

    Jesse2233 Senior Member

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    @Laurajnyc interesting thanks for sharing. So you didn't notice HBOT improvements until you went to 2 ATA? How's your energy now and have you had any positive bacterial labs?
     
  7. Laurajnyc

    Laurajnyc

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    C
    Correct. It took the increased pressure for me to feel improvement.
    Re the labs -
    - I did have high Epstein Barr levels. The antivirals my CFS doctors prescribed did not do much.
    - My rhuematology labs indicated there was positive autoimmune activity. I am waiting on new results to see if my immune system has calmed down.
    - I didn't have a bacterial infection as far as the hematologist or other traditional doctors found.
    - Here's the interesting part - I participated in Dr. Lipkin's study that is looking at the gut microbiome. My tests show very high, abnormal levels of bacteria.

    Last year, after I tested positive for methane-based SIBO, I did a two week course of antibiotics. I feel like that tipped me into illness.

    My energy now is pretty good, but I am afraid of challenging it. But I am working, we are socializing, I see clients onsite, etc. I feel almost normal again.
     
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  8. Jesse2233

    Jesse2233 Senior Member

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    @Laurajnyc that is so good to hear. Glad you're doing better, and I hope it continues to 100% :)

    Very interesting on Lipkin's study results. Perhaps the HBOT corrected a dysbiosis / repaired intestinal permeability.

    Do you know which autoimmune indicators you had elevated?
     
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  9. Laurajnyc

    Laurajnyc

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    Jesse - I think the HBOT is relieving me of a bacterial infection. I think dysbiosis can be a reflection of your system in general - if you have bad bacteria in your system it will also be found in the gut. I think SIBO is almost impossible to treat and may not be the primary cause of distress. I DO eat a very low carb diet. It does help me.
    I would have to lookup my labs to find the autoimmune stuff. My ANA tests were positive. I have parietal cell antibodies.
    Thank you for your kind, positive words. I'm not really a "poster", but I used this (and other) sites to search for help and support and I thought I should share my experience.
    L.
     
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  10. NelliePledge

    NelliePledge plodder

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    Hi @Jesse2233 have you been for your HBOT session - how did you get on? I've been today for a trial session which went ok so I joined the centre and have booked to go again in 2 weeks time. The pressure didn't bother me but the oxygen mask was a bit weird. I don't think there's been any big impact from the oxygen I feel like maybe a subtle difference in my head feels a bit clearer and I feel a bit more normally sleepy but that could just be what I'm expecting to feel I guess.

    Hope it went ok for you.
    N
     
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  11. medfeb

    medfeb Senior Member

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    Hi @Laurajnyc
    Do you mind my asking where you go in NYC?
    And thank you for this - great information
     
  12. Jesse2233

    Jesse2233 Senior Member

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    Hey @NelliePledge, glad you had your first dive, sounds like you were able to tolerate it!

    I had my first one yesterday. Stayed at 1.1ATA for most of it to get used to the chamber, and went to 1.3 for 10m ar the end. Felt for most it, ears adjusted well etc. Their mask was good in that I didn't have to strap anything on, I could just rest it on my face. Afterward I felt tired and worn out, but I slept 9.5 hours and feel considerably better today. Going again tomorrow. Hope your sessions go well!
     
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  13. Nickster

    Nickster Senior Member

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    My son Nick had the iv ozone therapy with Dr Hirt in Los Angeles and unfortunately it did not work. Instead he ended up in the hospital with his throat closing up -anaphylactic reaction. He did the glutathione treatment as well and it did not work. This may be different than the hbot. It's so hard to figure out what works.
    Sending healing thoughts to all.
    Ann
     
    Last edited: Sep 21, 2017
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  14. Laurajnyc

    Laurajnyc

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    Hi there! Are you in NYC?
    I go to Hyperbaric Medical Solutions (https://www.hyperbaricmedicalsolutions.com/). It's on 32nd between Lex and Third.
    It's $, but there's a discount for buying a package. Also, I called NYU to see what the cost would be and it was QUADRUPLE! I had also called a place in Queens and they were a little less. But this is much more convenient for me.
    Let me know if you're going to start there. Do you have a CFS doctor in NYC?
     
  15. boohealth

    boohealth Senior Member

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    @Laurajnyc if you need 2.0 then you probably have lyme...keep at it but when you stop you will slowly relapse if you don't maintain boosters. You might check into buying a mildhbot for home and continuing with that to keep the infection silent.
     
  16. Laurajnyc

    Laurajnyc

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    The lower pressure did not work for me. I am working on slowly reducing my visits. I do understand about a maintenance schedule.
     
  17. Laurajnyc

    Laurajnyc

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    Also, I don't have Lyme.
     
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  18. voner

    voner Senior Member

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  19. Laurajnyc

    Laurajnyc

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    A doctor and my Aunt mentioned it sort of at the same time. And it seems pretty safe and without side effects.
    Are you thinking of trying it?
     
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  20. boohealth

    boohealth Senior Member

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    In order to be more certain you don't have Lyme (which is epidemic in Westchester, Long Island, NJ and CT, all places you've likely visited) you need to take a course of antibiotics and retest using MDL or other excellent lab. The antibiotics will kill enough to bring out your antibody response. 2.0 is high.

    Re mbhot once you've gotten into a steady remission you may be able to stay healthy with lower pressure. Can't tell but worth a try.
     
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