August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
Discuss the article on the Forums.

Dr Park's 90% Recovery Protocol (LD-IVIG / IV Saline / ART / Nutrition) - What can we learn?

Discussion in 'General Treatment' started by Jesse2233, Jun 22, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,199
    Likes:
    2,759
    Dr Tae H. Park is a little known ME/CFS doctor practicing in Seoul, South Korea. He claims a 90% recovery rate using a combination of weekly low dose intravenous gamma globulin (LD-IVIG), IV saline / salt water intake, aggressive rest therapy (ART), exercise restriction, sleep support, and strict nutrition. He's been mentioned (once?) on this forum before, but his protocol has not been discussed in depth in terms of theory.

    Caveat: His work has not been replicated, peer reviewed, or formally published in any English journal I could find. 90% recovery is almost certainly an exaggeration. Still I find his protocol interesting.

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


    More details of his protocol (from Vol 1, Issue 2 of the IiME Journal, pg 5):
    And his purported results:
    --------------------

    By design or by chance, Dr Park's protocol combines some interesting theoretical approaches. It uses Dr De Meirleir / Dr Chia / Dr Peterson's IVIG therapy, combined with Dr Bell's IV saline, common sense advice on sleep and nutrition, and adds in strict guidelines for aggressive rest therapy (along the lines of Kimsie's theory).

    Let's look at each one, and then potential synergistic benefits.
    1. IVIG - Dr Park uses low dose (1g) weekly IVIG (interestingly not SCIG). This is not a replacement or autoimmune dose, but perhaps its regularity, combined with its intravenous delivery mechanism, allows for build up in the body that helps reduce autoimmunity, autoinflammation, and improves pathogen clearance. The low dose likely saves on cost, infusion time, and reduces discontinuance due to side effects.

    2. IV Saline - Administered at the same time as the IVIG is 500cc of IV saline. This is likely boosting blood volume allowing for better oxygenation of tissue and reduced OI. It is supplemented with high volumes of salt water throughout the week.

    3. Aggressive Rest Therapy - @Kimsie posited that total rest (eyes closed, lying flat, darkness, silence), punctuated by limited activity, would reduce reactive oxygen species (ROS), improve the electron transport chain (ETC), thus allowing for better mitochondrial functioning.
    It seems that Dr Park is attacking the heart of the disease by modulating the immune system, boosting blood volume, and repairing the mitochondria (while supporting restorative biological processes of sleep and diet). If the IVIG results in reduced pro-inflammatory cytokines, fewer autoantibodies, and a lower pathogen load, that will certainly benefit the mitochondria by reducing the work they have to do. It may also reduce direct damage to key enzymes like PDH, or the ATP translocator protein by the aforementioned ongoing causal triggers. The same is true with increased oxygenation from better blood volume (from IV saline), and more energy directed at mitochondrial repair due to ART. Interestingly he uses prozac to support sleep which is known to have anti-enterovirus properties.

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

    Contact info for Dr Park:

    Tae Hong Park, M.D.
    181, Bang-l Dong SONG-PA-KU Seoul, Korea
    Tel: 82-2-423-0119 E-Mail: pth11246@chollian.net

     
    Last edited: Jun 23, 2017
  2. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,948
    Likes:
    22,161
    USA
    Whether this is intentional or coincidence, this is also a low histamine diet (no canned foods, MSG, hot peppers/spices, citrus, pork, and no contrast dyes, etc).

    This is extremely low dose and am curious what the mechanism is?! My MCAS went into remission as soon as I began IVIG at 24 grams (this was low dose for me) and I was not up to the high dose IVIG (82 grams) for about 4-5 months. So, clearly there is some mechanism at play at all different doses but I wish I knew what it was!
     
    Sancar, AndyPR, Valentijn and 2 others like this.
  3. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    13,980
    Likes:
    21,297
    Albuquerque
    But from what??? What diagnostic criteria is he using? Count me doubtful.:cautious:
     
    Sancar, Groggy Doggy, barbc56 and 4 others like this.
  4. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,199
    Likes:
    2,759
    Me too Sushi. I think the protocol is interesting though
     
    Last edited: Jun 22, 2017
  5. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,199
    Likes:
    2,759
    Interesting, I didn't catch that

    I'm curious too. Dr Chia told me high dose isn't necessarily better though clearly for autoimmune it can be
     
    Sancar and Gingergrrl like this.
  6. Murph

    Murph :)

    Messages:
    387
    Likes:
    2,089
    90% after what timeframe I wonder.

    and on what definition of recovery?

    I know from experience you can have a long and deep remission of symptoms but still have the disease. E.g. yoiu are generally well but able to trigger a distinctive episode of PEM if you, say, drink a lot, sleep very little and do endurance exercise in a short period of time. The disease is still there but just exceedingly mild.
     
    Sancar, barbc56, ScottTriGuy and 2 others like this.
  7. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,199
    Likes:
    2,759
    Good question on timeframe, was wondering that myself

    Regarding recovery definition

     
  8. taniaaust1

    taniaaust1

    Messages:
    11,870
    Likes:
    12,565
    Sth Australia
    It doesnt stay there in everyone who has a remission. For me it was completely gone in my remission period, I was able to do everything I previously was before I got ME no issues at all
     
    justy and jpcv like this.
  9. taniaaust1

    taniaaust1

    Messages:
    11,870
    Likes:
    12,565
    Sth Australia
    Interesting thing is doing only half of his protocol was what lead to me having a full remission for 2-3 years. I did ART in the same way he describes it (no watching TV while laying in bed, I listened to no music at all, silence, I completely rested body and mind).

    Maybe if I'd been on the rest of this protocol the recovery using ART wouldnt have be so terribly slow (it took years of slow improvement with it before I was in full remission).

    Looking at his protocol, I personally can see how it would work for lots of us and it eliminates also coexisting issues which may be preventing many of us from being able to heal just from proper done ART.

    How many with ME/CFS are actually wrongly diagnosed as they only have autonomic issue such as POTS or another thing which has low blood volume but have ended up wrongly diagnosed with ME/CFS due to it?. Even for many ME/CFS people, the weekly saline not only helps them feel better for 1-2 days but maybe it can over time kick start their body into adjusting it normally. So this protocol could help heal that group.

    As another said, its also a low histamine diet, so that would help other things.

    " aspartame" Ive heard of a couple of different ones with CFS recover from cutting aspartame out of their diets

    "High protein diets" can help some those who have insulin resistance (hyperinsulinemia). My allergist calls that condition the pandoras box of illnesses as it can cause so many symptoms to the point that people sometimes get diagnosed with CFS. Not many of us have been tested for that issue.

    anyway, I know I had a remission just from only HALF of that protocol. (and i had been completely bedridden). Im sure this guy would be fixing many esp when he's telling people not to be doing housework (that can also mean then less chemical exposure etc) so hence certainly making sure they are more likely to rest.

    If I was put on his protocol, I personally think I would likely go into remission again. Pity I dont have a supportive doctor to support that kind of thing and Im well aware Im doing way to much.
     
    Last edited: Jun 23, 2017
  10. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,199
    Likes:
    2,759
    @taniaaust1 thanks for sharing your experiences!

    I agree that he covers a lot of ground for different folks. I can't really think of a subset this wouldn't do some good for

    I think his protocol is DIYable if you can get the IVIG/saline supported by a doctor. Big if of course
     
  11. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,199
    Likes:
    2,759
    I think adding HBOT in between infusions (for additional tissue oxygenation), neurofeedback (for neuron growth), antivirals (based on onset and bloodwork), and mito/methylation supplements could make his approach even more more effective.
     
    Sancar likes this.
  12. Murph

    Murph :)

    Messages:
    387
    Likes:
    2,089
    This is interesting to me. Did the things you were always able to do before ME include anything in the way of endurance exercise, long hikes, all-nighters, etc?
     
  13. jpcv

    jpcv Senior Member

    Messages:
    147
    Likes:
    323
    SE coast, Brazil
    Very interesting.
    Two personal observations :
    - using upper extremities is what generally causes or worsens my PEM episodes
    - I have recently adopted a similar diet cause I was having gut problems: It has helped a lot and I´m feeling better.
     
    ljimbo423 and Murph like this.
  14. Alvin2

    Alvin2 Senior Member

    Messages:
    998
    Likes:
    2,630
    I'm not buying this. However i know nothing about LD-IVIG
    The diet is not terrible so ok no harm trying it, the "sleep control" is ludicrous, anti depressants don't improve sleep quality, the hydration is really a joke but strikes me as intended to raise blood pressure (most people drink enough water containing fluids and get more salt then this already), the exercise restriction is common sense to us if a little extra, and people dropping dead from exercise is uncommon in ME/CFS, though it will make us worse.
    The gamma globulin may be doing something, but the rest of it is rather silly

    I know we are all desperate but lets not grasp onto anyone promising a "miracle" cure, talk is cheap, nonsense treatments are a dime a dozen and I look forward to some double blind placebo controlled testing and actual numbers :lol:
     
    frederic83 and barbc56 like this.
  15. Mij

    Mij Senior Member

    Messages:
    2,212
    Likes:
    4,483
    I take an antidepressant at low dose for sleep (trazodone) which gives me deep restorative sleep. This could be what he means by taking an AD.

    His protocol manages symptoms, recovery is unlikely.
     
    jpcv and barbc56 like this.
  16. Basilico

    Basilico Florida

    Messages:
    819
    Likes:
    1,945
    My red flag for any CFS practitioner is a high percentage rate of 'cured' or 'recovered' patients. As soon as I see unbelievably high numbers, I am extremely cynical about the doctor as a snake oil salesman who is mainly concerned with making money from desperate people.

    Aside from the microdose of IV gamma goblulin/saline, there is nothing on his list that my husband and I haven't tried, or that a majority of those here on PR haven't tried. I don't have experience with the IVGG to be able to dismiss it, so maybe there is something to it. I know that some here on PR have gotten some improvements with that, but I don't remember anyone discussing going into CFS/ME remission as a result of it...perhaps I overlooked those posts?

    I would be much less cynical if he didn't use a "90% remission rate" - hearing statistics like that is like flipping a kill switch for me. If that were true, I'd think the brilliant scientists currently working to crack the CFS mystery would be inundating his clinic for some insight. There is probably a good reason that he is not well-known.

    *Sorry to be a Debbie Downer; CFS practitioners conning money from desperately sick people is a huge source of frustration for me, and I have become extremely skeptical of most of them at this point.
     
    jpcv and Alvin2 like this.
  17. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,199
    Likes:
    2,759
    You guys are likely right regarding the 90% recovery rate being an exaggeration or misinterpretation.

    What I think is interesting is the concept of removing the ongoing causal trigger through biomedical intervention, replenishing the body, and aggressive rest therapy to repair mitochondria / brain function.
     
    Sancar and jpcv like this.
  18. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,199
    Likes:
    2,759
    @taniaaust1 how old were you when you had your remission?
     
  19. laxative_mess

    laxative_mess

    Messages:
    10
    Likes:
    19
    After some searching around online on S.Korean websites, it appears that this doctor is highly controversial among the Korean CFS community. I found a Korean-language forum for CFS and they do not recommend him. They also mention that he's a bit infamous and controversial... I would definitely avoid going to see him. Just FYI, it's mentioned that the IVIG is done through a shot and each dose is roughly $100 (I'm guessing with insurance? I believe Korea has universal healthcare?). The treatment period is about 4-6 months.
    upload_2017-6-26_22-47-47.png

    Also, if you've noticed, Dr.Park left 2-3 comments on one of Cort Johnson's healthrising articles last year: https://www.healthrising.org/blog/2...-fibromyalgia-chronic-fatigue-pots-explained/
    upload_2017-6-26_22-58-11.png
     
  20. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,199
    Likes:
    2,759
    Uh oh what they saying about him him on that forum?

    His comments about cytokines and microcirculation are interesting. I wonder if he has research to back that up
     
    Sancar likes this.

See more popular forum discussions.

Share This Page