HYPERBARIC OXYGEN THERAPY???

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Godismystrength, Oct 2, 2012.

  1. I just read that hyperbaric oxygen therapy (HBOT) has been shown to help a whole host of neurological conditions, like MS and Lyme Disease, among others. Since ME/CFS is a neurological condition, could HBOT help us too??

    I read that many of these neurological conditions saw significant improvement. I also read that a health center in Naples, Florida (can't remember the name now) has had success with mega glutathione I.V.'s and the HBOT for Parkinson's. This Health Center also listed CFS as one of the conditions they treat.

    Has anyone heard of this treatment or treatment center? I know the healing power of oxygen, so it seems like forcing oxygen into our cells could def help... It would be great if something so simple could help us... esp if insurance would cover it.

    Any thoughts??

    Blessings,
    Shel
  2. di410

    di410 New Member

    Hi Shel, that makes sense when you speak of 02. It enables the cells to work properly. I think that's what's wrong with half of us. We don't get enough 02 into the cells to work.

    Di410
  3. ex-cfs

    ex-cfs New Member

    While I was recovering from CFS, I tried hyperbaric oxygen therapy (HBO). We had a local place outside of a hospital, which was rare. The process was a little scary in multiple ways, but it did seem to help. The theory I followed (read somewhere) was that brain cells can be impaired for 3 years before dying, so rescuing them with oxygen before then can restore them. I guess so. HBO was not the most important thing I did, by a long shot, but it did seem to noticably help.

    I did it with oxygen under pressure in a huge metal tank. But now I understand there are personal canvas chambers, and they do not need to add oxygen. They just pressurize normal air, and that forces enough oxygen into tissues.

    On the IV glutathione, I attended a lipid replacement seminar given by Dr. Patricia Kane, MD in which she reported lots of success with her methodology, which if appropriate, includes IV with glutathione, phosphatidylcholine (PC -- might have the spelling wrong), and sometimes Vitamin C. I tried the PC, but not the glutathione, and it was amazing!! Dr. Kane has treated many cases of CFS. She finds very long chain fatty acids, which are not supposed to be there, or there are too many. And she finds sometimes people are taking too much omega 3 EFAs (fish oil, flaxseed, etc) which actually makes them more tired. She has a detoxification protocol, though as with most new things with CFS, I recommend going slowly with the doses. I was unusually sensitive to some of the liquid minerals. She has had amazing success with a variety of neurological conditions. She's not in FL, but in NJ.
  4. herbqueen

    herbqueen New Member

    I don't know about fibro, but I have to assume if it helps chronic lyme it would be helpful to FMS. I know someone who was housebound for 5 years and horribly ill with lyme- muscle pain and horrible all over neuropathy pain, total insomnia, sound and light sensitive. She was in agony. One year ago she was in total agony and began a home HBOT system. One year later she is running, doing yoga and working part time. The home systems are not as high a pressure as the commerical places. She said some research shows the lower pressure is better for neuro issues. She used it every day for 1 hour and notices no improvement until the 40th session which is what she was told by the fellow who builds them who cured his lyme with it. The catch is they are very expensive around 12,000.00 new. She said the key is to do it everyday/long term which can only be affordable with a home based system. They have a payment plan.
  5. Ex-cfs, how long did you have cfs before you recovered? I know that the sooner we are diagnosed and start some intervention/treatment of various kinds, the better chance we have of recovery. But that is so encouraging that you were able to find the treatments to help you back to health! We don't get to hear such happy news with CFS that often.

    I've never heard of the PC you referred to... but would like to explore that and the HBOT. Dr. Kane sounds like a great doc... wish she wasn't so far away from me... but I appreciate the info just the same. Its def worth looking into. Thanks again!

    Herbqueen, thanks so much for sharing that encouraging news about the effects of HBOT on Lyme disease. There are so many similarities of the effects of lyme and cfs/me that it is def possible, if not probable (as ex-cfs can testify) that the HBOT can help those of us with CFS/ME as well. Just wish the home system wasn't SO expensive... even with a payment plan, for many of us, it is priced out of our reach. But I so appreciate you sharing that info!

    I am always trying to learn and glean as much as I can so that maybe, just maybe, I will FINALLY hit on the right thing that will turn my health around and give me my life back (I'm sure we ALL feel this way!) ... So thanks everyone, for your feedback! I would love to hear if anyone else has been helped by HBOT or knows of someone who was helped.

    Blessings,
    Shel
    [This Message was Edited on 10/05/2012]
  6. I also had never heard of a connection between possible problems with long-chain fatty acids in CFS/ME, but this is very interesting to me.... and def worth exploring. So thank you for sharing that! Does she say how much Omega fatty acids is too much? Because I do take Omega fatty acids in a couple of different supplements... just wondering...

    Blessings,
    Shel
  7. MicheleK

    MicheleK Member

    Most top ME, CFS doctors are of the opinion that HBOT is an effective tool in treating symptoms, though it is not a cure.
  8. I haven't been on here for a few days because of a really bad flare (brought on, I'm sure, from my daughter's recent visit and trying to get this body of mine to rise to the occasion.) But thank you, for your response :) I wasn't aware of that, so it's good to know. If I could just find a doc in my town who would be willing to prescribe the HBOT, I would be willing to try it. This DD is not going in the right direction lately, so I'm willing to try just about anything that will give some improvement! Thanks again, Michele!

    I hope you're doing O.K.... been thinking of you and concerned how you were handling Rich's death. I know how upset I felt, so I can only imagine how you must have felt... praying for you...

    Blessings and Gentle Hugs,
    Shel
  9. MicheleK

    MicheleK Member

    Hi Shel, I have been having to lay low for the past 6 weeks or so. I watched my grandson and a few days later BAM! I've been in bed ever since, no talking outloud, though I do talk to myself in my head. LOL

    My CFS doctor is going to put me on a low dose of pregnisone for a month to see if that will lower the inflammation and help me get over this. I have taken all the tumeric, omega 3's, resveratrol, etc., that I can, and it's just not worked this time around. I do very well on steroids so my doctor is thinking I might need a low dose regularly.

    Seems like if I do anything physically or talk for more than ten minutes outloud, I get relapsed and severely inflammed to the point that it can be hard to breathe. Wierd! You are right about this DD. : )

    How was the visit with your daughter?

    I think the change of season also is affecting many of us. I am up in Michigan and it went down to the 30's. We woke up and everything had a very heavy layer of white frost. Yuck! Oh well, it's usually about the same temperature in my house, so I guess i shouldn't complain till I actually get a chance to be out there in the cold. I'll be happy to be out there. And I will go right back to see my grandson first chance I get. LOL He's so darn cute. I can't resist him.

    Sending you some love and a hug, Michele
  10. I am so sorry to hear what you've been dealing with... but I can sooo relate. When I'm at my worse with this DD, I am too weak to talk or move and can also have trouble breathing if I try to talk or exert in any way. So my heart is really going out to you right now! I will be praying that you get your strength back (what little we have, right?) so you can be up some and get to see your grandson again!

    I don't have any grandchildren yet, but that could change at any time. My oldest daughter (who just came for a visit for 10 days) just got married last December and both she and her husband are anxious to start a family. They are living in England now, stationed there with the Air Force for the next 3 years though. It will be difficult for me if they start their family while overseas, since I won't get to see the baby much. But part of me is also afraid that even when they're here, this DD has disabled me so much that I won't get to do the things with my grandchild that I want to do... so heartbreaking! Such a cruel disease!

    In the summer, my younger sister (15 years my junior) wanted to bring my baby nephew over once a week because she knows how much I miss seeing him (though they only live 10 minutes from me...but because of my disability level and the fact that my sister works as a teacher during the school year, I don't get to see him)... I just adore him so much! Well, it was a sweet idea that crashed and burned after her first visit with him. I was so excited to be with him that I wayyy overdid and paid dearly for it the next day and many days after. So my sister was afraid to bring him over again cause she didn't want to put me through that again. It broke my heart! And that is why I'm so apprehensive about when I have grandchildren of my own! But when you described your situation, it was like deja vu! Although, your relapse is lasting much longer than mine did. I am so sorry!!

    I am def praying for you, Michele! Hope the pregnisone helps (although, I thought steroids made our CFS worse?? Maybe not for everybody then?? Or maybe I'm thinking of Florinef... that stuff almost killed me!) Do you use sea salt to help with the low blood pressure cfs causes? Because I sometimes forget about it, but if I take it, I find that some of my weakness and dizziness improves... just wondering...

    Btw, my daughter's visit was very difficult for me because I already wasn't doing well from my son's visit the week before. (He is stationed in Hawaii but is at a base about an hour and a half away for an 8 week course... till the 1st of November). He gets to come home for the weekend every couple weeks or so, and I had already pushed myself for his visit.... and hadn't had enough time to recuperate before my daughter came. I was thrilled to see her, and we did have some nice times together here and there... but my body was sliding down a slippery slope the entire time. Its such a shame what this disease does to us! Our bodies won't take us where we want to go... sometimes I feel like a caged bird! My spirit is the same, but my body is so sick most of the time that I can't express it. If it weren't for my faith, I don't think I could survive this seemingly impossible situation.... I am so thankful that the Lord helps me through all these endless challenges and difficulties! Don't know what I'd do without Him... or this message board... and friends like you, Michele! Hope you are doing better soon! Keep me posted!

    Sending some love and gentle hugs right back,
    Shel :)
    [This Message was Edited on 10/11/2012]
  11. MicheleK

    MicheleK Member

    Your expression that sometimes you feel like a caged bird, reminded me of a song I listened to today by Rob Thomas called "Someday" In the lyrics he sings, "some day we'll live our life outloud, we'll be better off somehow, someday." I kept listening to it and singing outloud to it. I so look forward to "living outloud" again! I use to be triple peppy. Now I am emotinally peppy but my physical level is well...let's just say right above a sloth! LOL

    I was very upset and worried and cried like crazy during the entire pregnancy, deeply concerned that I would not be able to be a grandma and be with my grandchild. I was totally bed bound and silent when they told me they were pregnant. I had been that way over two years by then and it didn't feel as if it would ever get any better.

    I was actually shocked at how severely the news affected me emotionally, though I did not tell my kids. My son got married 13 years earlier and they had been adamant they were not having children. So I gave up and had accepted I would not be having a grandchild through them. I had been talking about having a grandchild since their wedding! It was my hearts desire. So thinking I was going to be totally robbed of that turned on deep emotions inside me.

    I talked to many other patients who were in the sever level of illness too and had grandkids. Every single one of them told me it is one of the greatest experiences of life and that the grandchildren adapt to you with an illness. Well, they were right. It is like magic potion to the heart! I am so very grateful to have him, even if I could never see him, I would know that he lived and was being taught about the creator, and giving great joy to my son and daughter in law. I was ready to just accept those blessings and be happy.

    But I have gotten to see and be with him at least every few weeks. And really, you know how this illness can numb your feelings or make the days just go by without knowing what day it is etc.. The minute I see him, hear him, or even look at his picture, my heart feels like it is swelling inside full of smiles. It's an absolute pleasure. So try not to worry that you can't be the kind of grandma you could have if you didn't have the disease and just look forward to the time you have a grandchild and sort of relive raising your own thorugh him/her. With this disease we have to constantly count our blessings or the losses would envelop up. I know that you do this from your many expressions I have read.

    I understand how you can love to have your children visit, but also dread the enery drain and symptoms that hit afterward. My sons will want to come over and I will tell them no, I'm not up to it. But mine live within 40 minutes of me so I know I could see them anytime I wanted. If they lived far away, I'd be doing the same thing as you. Happy and then crashing. Oh well, you could have crashed for nothing too. At least you got to see them! Goodnight
  12. We are so much alike! It is good to know that I'm not the only one who is "emotionally peppy" but physically more like a sloth! LOL! Thanks for the chuckle! Yes, I too, once was very peppy.... but now I'm like a bottle of soda that's gone flat.... wayyy flat! Hahaha! Just need to find a way to put the "fizz" back! :) hopefully sooner than later!

    But thanks so much for sharing your experience with becoming and being a grandma... it does encourage me! I have to keep teling myself, "One day at a time"... and sometimes even "one moment at a time"... I'm sure you can relate! But I so understand the joy your grandchild brings you! Even my little nephew brings me such joy... beyond description! So I can only imagine the joy a grandchild will bring!!!

    Thanks again, Michele, for the encouragement! And the lyrics to that song sound sooo familiar, but I can't hear it in my head... I'll have to look for it on youtube. (Don't know what I would do without my smartphone... its my connection to the world!) And I hope you can keep on singing and hopefully start feeling better and stronger, Michele! I love to sing too! Just don't usually have the strength to sing outloud... so I sing in my head! But like the song says: maybe SOMEDAY... :)

    Blessings and Gentle Hugs,
    Shel
    [This Message was Edited on 10/15/2012]
  13. MicheleK

    MicheleK Member

    Well, now i know another thing we have in common. I can't sing outloud much either. It seems to take a lot more oxygen to sing. Talking out loud for more than around 10 minutes too will trigger a flare in me.

    When I see professional singers belting out tunes, I now have a new appreciation for their lung capacity! Instead of just hearing their voices, I am thinking how amazing it is that they can sing night after night at concerts for hours. In the past I would never have had that thought cross my mind.

    Hugs, Michele
  14. 2precious

    2precious New Member

    I had a toxic chemical inhalation injury and it had multiple effects, including hypoxic areas in my brain observed on SPECT scans, severe chronic fatigue, pulmonary problems, etc. I also developed severe bone infections in my jaw that did not respond to 13 surgeries and 19 rounds of antibiotics. I had 60 treatments in the hospital high pressure (2 ATM) units that stopped the bone infections and helped clear the brain fog and the severe muscle pain. It was important that HBO be given in succession as it helps the body to form new capillaries to bring blood to idling brain neurons to cause them to fire again. The bone infection was actinomycosis, and the oxygen under pressure was able to stop it and halt the bone infections that had destroyed 60 percent of my left mandible. At that time the low pressure HBO units came out and my neurotox physician began treating me with it when the muscle pain became bad. Initially I started with 40 treatments, then went to 20. Approximately every 6 months I needed a series. While it is not a cure, the amount of relief of pain and great improvement in cognitive function and quality of life was the biggest relief. Within 2 weeks of a treatment series, there is notable improvement. I eventually was prescribed a unit at home. That was covered under Workers Comp. It allows me to be treated when I need it, and not have to wait months for authorizations. I use it when the pain gets bad and nothing else is helping give relief. A 2005 study done at the Univ. of PA by Stephen Thom, MD showed that hyperbaric treatments increased number of the patient's own stem cells eightfold and that may play a role in helping the body to repair itself.
  15. (Don't know what happened... I responded to your post yesterday and when I hit submit, my response disappeared! And then I didn't have the strength to type my response again... but here I go again...)

    I am SO sorry to hear what you've been through! God bless you! But thank you for sharing such great info on how HBOT helped you! It def sounds promising for those of us with NeuroEndocrineImmune Disorders.

    I know many of us have heavy metal toxicity and that many of the heavy metals are neurotoxins... so I often wonder to what extent does that impact our disease of ME/CFS?

    Thanks again for taking the time to share such great info with all of us! Now if we can only find docs willing to prescribe the HBOT... although, if we need that many treatments, I would think those of us with severe ME/CFS would need our own home units... something to look into and pray about at least.

    Hope you are doing well these days, 2precious! (Do you suffer with ME/CFS now too?) God bless you!

    Blessings and Gentle Hugs,
    Shel