posted
Hi, I am new to this post. I searched it after my son who lives in San Francisco called me to tell me a friend had texted him about an MD friend who runs a regenerative medicine clinic in So Cal.
He said that the MD has had almost 100% success with hyperbaric ozone therapy; hence researching this topic.
I cannot process 90% of what I am reading but do understand you need a prescription. What diagnosis code does the doctor use on the prescription for the chamber and the oxygen concentrator (yea I remember something from 35 years of nursing)
Does anyone know of someone in New Orleans LA area that may have a chamber? Obviously I cannot afford one as have not worked since 5/2016 and still awaiting SSDI determination.
Also can someone send me a link to the diet? Is it like Ideal Protein? I have been pretty strict Paleo WAY before I got ill...was a huge cyclist, taught 2 spin classes a week since 1997, functional training and yoga. Now I can barely get out of bed and move to the sofa and have gained 12 pounds.
My doctor wants to test me for SIBO but it costs $900. I have Medicaid but only Doctors Data and Genova do the tests the doctor wants.
Thanks; desperate to get my life back as I heard a friend of my husbands say that he was sharing "how bad it is, she can't even wash dishes"...hopefully he didn't share that he has to help me to the bathroom, shower or wash my hair some days. Posts: 86 | From LA | Registered: Jul 2016
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posted
Hi, I am new to this post. I searched it after my son who lives in San Francisco called me to tell me a friend had texted him about an MD friend who runs a regenerative medicine clinic in So Cal.
He said that the MD has had almost 100% success with hyperbaric ozone therapy; hence researching this topic.
I cannot process 90% of what I am reading but do understand you need a prescription. What diagnosis code does the doctor use on the prescription for the chamber and the oxygen concentrator (yea I remember something from 35 years of nursing)
Does anyone know of someone in New Orleans LA area that may have a chamber? Obviously I cannot afford one as have not worked since 5/2016 and still awaiting SSDI determination.
Also can someone send me a link to the diet? Is it like Ideal Protein? I have been pretty strict Paleo WAY before I got ill...was a huge cyclist, taught 2 spin classes a week since 1997, functional training and yoga. Now I can barely get out of bed and move to the sofa and have gained 12 pounds.
My doctor wants to test me for SIBO but it costs $900. I have Medicaid but only Doctors Data and Genova do the tests the doctor wants.
Thanks; desperate to get my life back as I heard a friend of my husbands say that he was sharing "how bad it is, she can't even wash dishes"...hopefully he didn't share that he has to help me to the bathroom, shower or wash my hair some days. Posts: 86 | From LA | Registered: Jul 2016
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posted
oh etb, welcome and I'm sorry. Your story is like so many of ours. Very active people brought down to needing help taking a bath.
Have you been tested for lyme? Are you seeing a LLMD?
There are many here that can answer your questions better than I, but I was doing some reading today. This is an article on bacteria and oxygen from Penn State that is interesting if you feel like a little reading.
posted
Thanks! My extremely active life came to a halt 3 weeks to the day that I was hiking the Greenbelt in Austin with my daughter. Saw a tick crawling on her, flicked it off. We did quick tick check all good, cont on and then wham 3 weeks later could not walk and in worst pain of my life. And I can say that from numerous cycling crashes over the years!
Nothing like it, immediately had foot drop and was told it was a "acute radiculopathy due to pinched nerve", 3 rounds of steroids, then came the tremors, uncontrollable leg movements, HA, fatigue, vision etc etc.
Was sent to neurologist and tested for everything including Lyme by Quest which was of course neg. None the less he treated me with 30 days of Doxy and 2 weeks of IV Rocephin. Some symptoms a little better and some worse.
6 months after possible bite went to Integrative Medicine MD who sent labs to Igenex (2 months after completing Rocephin) and tested IgM positive for 31, 34,41 &58 and pos IgG for 41. IFA was "equivocal".
Also tested positive for black mold, glitoxin, and MARCONS. Now have all the "collateral damage"; HPA axis dysfunction, hormone irreg, major inflammation, dysautomomia and on and on.
Eye sight JUST got better so reading article now! Thanks!!!
Posts: 86 | From LA | Registered: Jul 2016
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posted
Etb- I do not know of the codes you would use. You may want to message Phoiph to see if she knows of any groups in New Orleans where you could share a chamber.
The diet I've used has been from the book by Jimmy Moore- Keto Clarity. It can be ordered from Amazon and he has a podcast.
The GAPS Diet is also good to heal your gut.
It sounds like you need appropriate and potentially aggressive medical attention right now from what you've described until you can locate a next step-mild hyperbaric or whatever. Your case seems to be aggressive from what you've described. I would try to get to the best Burrascano like doctor you can as a first step. Seeking Doctors thread could help there. Godspeed for your healing.
Posts: 859 | From Southeast | Registered: Mar 2011
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kgg
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posted
Welcome, etb6855. Im sorry you are having health problems but glad you found us. I am not aware of anyone in the New Orleans area, but that does not mean there isn't anyone. Isn't Dr. Paul Harch from there? He wrote The Oxygen Revolution. He runs a place that does deep dives opposed to the mild chambers we use.
Are you out of the mold at this point? I am just now exploring mold for both myself and son. It is a Pandora's box.
Posts: 1770 | From Maine | Registered: Jun 2004
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Inflatable chambers cannot achieve internal pressures over 1.3 ATA (10fsw)—yet scientific studies show that oxygen becomes bacteriostatic at 1.5ATA (16fsw) and that pressures lower than this cannot kill bacteria but will actually enhance the growth of certain molds, fungus and aerobic bacteria.
(Textbook of Hyperbaric Medicine, page 143,4th Revised Edition, K.K. Jain, et al.)
I tried a google search to find more information and every HBOT site that doesn't believe in soft chambers has this same quote.
I also found the textbook. He has an updated version that discusses HBOT use in lyme disease but the textbook either in the 4th or latest version is over $100. Too much money to spend to verify if they are using the quote in context.
Just wanted to know anyone's thoughts on this
Posts: 538 | From kentucky | Registered: Nov 2011
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kgg
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It is my understanding that mild hyperbaric oxygen treatment does not kill bacteria. But it does modify the immune system so that it can deal with the bacteria.
posted
Just messaged Phoiph. I think she is the person to answer these concerns SM. I have the same understanding that KGG has. Godspeed!
Posts: 859 | From Southeast | Registered: Mar 2011
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Phoiph
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soccermama~
I have seen the link/site you posted. I have contacted them in the past about their propaganda against soft chambers and to let them know that a soft chamber saved my life. They never responded, and they don't let on as to who they are.
Unfortunately, manufacturers and vendors of clinical hard chambers have a lot to lose if word gets out that people are having success with their own home chambers.
I don't find the statement quoted (p. 143) in your post in my (5th edition) version of the "Textbook of Hyperbaric Medicine" by K.K Jain. It does state on p.137, however, that pressures lower than 1.3 ATA can promote the growth of aerobic bacteria by enhancing oxygen delivery to injured tissues.
This is likely why higher pressures are indicated for different conditions, like infected, non-healing wounds or burns, for example.
More importantly, IMO, it also states that phagocytic leukocytes (white blood cells) present the first and most important line of defense against microorganisms introduced into the body...and that the capacity of the leukocytes to kill depends largely on the amount of oxygen available to them.
So, although mHBOT does have certain pathogen-killing properties, I agree with kgg that empowering the immune system to do its job is likely the broader and more important effect.
Posts: 1984 | From Earth | Registered: Jul 2013
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posted
soccermama, I agree that the main effect of mHBOT is the immune function improvement, however I have to say that I have done both, the big chamber (2.4 atm) and the mild chamber...the big chamber made me much worse and the mild chamber has given me my life back.
I agree with Phoiph on the agenda of that site...follow the money.
Posts: 550 | From NW Arkansas | Registered: May 2003
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posted
Okay,Phoiph. If I understand your post correctly, the statement was in reference to wound healing and people on other "hard" chamber sites have taken that information out of context and used it for ALL conditions.
I really believe that the Lyme MD is a well educated man and not prone to use treatments unless there is some science behind it or it has to make common sense to his mind.
He has documented on his blog numerous times the use of chamber as at least an adjunct to treatment and is still trying to figure out the "sweet" spot for curing.
I've just had a really bad flare that seemed to be triggered by the chamber. It was unexpected because last year when I first purchased the chamber, I went over 34 days at full pressure and mask without any incident before a window blew out and I had to stop.
This time I was at 16 days when I had a complete crash. So I'm a little spooked. It's been two weeks since I've been in the chamber. I'm now on antibiotics for a UTI. (Go figure where that came from.) After I finish, I'm going to begin again much more slowly.
Posts: 538 | From kentucky | Registered: Nov 2011
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Phoiph
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posted
soccermama~
The statement wasn't in my revised copy (5th Edition) of the textbook at all (at least not that I could find, and not on P.143).
I don't have a copy of the 4th edition, so I don't know if that statement actually appears in it, and in reference to what, or what context.
I do know that propoganda-makers like to hyper-focus on statements that grab attention and invoke fear and doubt in those that don't have a broad enough knowledge base to put the statement into a relevant context.
I am sorry you had a crash...we did talk about the time gap, what has happened between then and now, and why you might have reacted more intensely this time.
IMO, you are wise to start very slowly next time.
Posts: 1984 | From Earth | Registered: Jul 2013
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posted
SM, I'm sorry you crashed after 16 days. I thought I was working up slowly and did so in a month. I realized even THAT was too quickly for me. I'm at about 2.5 months, 1 hr a day and ALMOST 1 hr of oxygen. I'm about 10 minutes off.
On another note. Does anyone know how well mhbot works with PTSD? I have so many traumatic memories that surround this illness. Sometimes I do pretty well with it and then it will hit me. I will go to a certain store or down a road that will remind me of something and BAM, the fear and anxiety fly and I can hardly bring myself to think of those moments without panic.
Hoping that goes away sometime.
How is everyone else doing?
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Phoiph
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HW88...
I can attest to how well mHBOT works for PTSD.
Often times, during my illness, I thought that even if by some miracle I were to get well, I would be psychologically scarred and traumatized for life due to the protracted, and tortuous nature of the ordeal.
It still amazes me that I am able to talk about my experience in detail without trauma or discomfort. I believe 100% it is due to the brain healing effects of the chamber.
Not only do I believe mHBOT is responsible for this effect, but during my healing with mHBOT I also mentally "revisited" difficult times and unresolved issues in my pre-Lyme past, and feel much more at peace with these issues as well. None of this emotional repair took any effort; the issues were just more present in my mind for a time, then faded away, as if they were being worked on in the background.
You may know that mHBOT is being used to treat PTSD in Veterans:
Phoiph
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posted
Welcome, etb6855...
You do need a prescription to purchase a new or used chamber from a manufacturer, but the prescription does not need to include a diagnostic code.
A diagnostic code may be necessary if you are seeking insurance reimbursement for mHBOT...but best of luck with that. Unless you have one of the 15 conditions approved by Medicare, they won't cover it, and will not pay for a home chamber even if you do have one of the 15 conditions.
I don't currently know of anyone in your area who is sharing a chamber. That said, there have been people who have used crowd funding (GoFundMe) to raise enough cash to rent a chamber from month to month from a resource I will gladly share with you. One person who used to post on LymeNet ("Lymeboy") did this as a last resort, and is now doing great and has his life back fully.
I (we) will help you navigate the process.
Posts: 1984 | From Earth | Registered: Jul 2013
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TF
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Phoiph, I have been wondering how Lymeboy was doing. I corresponded with him a lot years ago.
I am SO happy that you say he now has his life back fully!!! I can hardly believe it.
Please tell him how much it means to me to hear this!
And, I am so happy that you stepped in and helped him in his very dark, dark time. Wow!!
I would LOVE to hear from him.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Phoiph
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TF...
I am so very happy for him also!
He keeps promising he will post here again...but is having trouble finding the time, as he is so busy now. I'll twist his arm...:)
Posts: 1984 | From Earth | Registered: Jul 2013
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posted
Thanks Phoiph as always you are a giver of hope.
I love that there is another success story. I would also love to hear from lymeboy. Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Phoiph
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Aw, thanks HW88...I've seen so many people turn around, that there is great reason to have hope...
Posts: 1984 | From Earth | Registered: Jul 2013
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posted
Thanks Phoiph and all who posted here! I have another possible treatment venue that another friend turned me on to just like our friend who shared about HBOT with my California son (which then led me here!!)
I will post under seeking doctors but just if the chance someone on this thread is familiar, has anyone seen Dr. W in Idaho? You can PM me!
Thanks again...trying to explore it all when I have the energy, eyesight etc to do so...
Posts: 86 | From LA | Registered: Jul 2016
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posted
Yes, SO incredible for Lymeboy! It is always so encouraging to hear how well he is! Phoiph- you have been so good to so many!
July 29 will be 6 months for me with daily mhbot! I'm excited. I'd say the gains are pretty tremendous- I feel like I am getting my real life back one day at a time! Hang in there team! We can do this! Posts: 859 | From Southeast | Registered: Mar 2011
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for the longest time taking a "green powdered drink" every morning....just reviewed the label (with a semi clear mind) and realized it's loaded with wheats,barley and I'm allergic to these ingredients,I see the benefits of other ingredients,however,trying to get the most from diving,really starting to think the diving is doing enough so why add so many supplements?
Thanks,good health to all)
-------------------- Chronic Lyme Posts: 36 | From Florida | Registered: Jun 2016
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posted
willbeatthis, yeah!!! So glad to hear of your progress.
I asked this over in medical, but no responses, so I'll ask here. a lot of my symptoms are improving, but the one that WILL NOT BUDGE is my head.
It's a dizzy, buzzy, eye strain, pressure type feeling. Any thoughts or suggestions on this? I think if I could get my head (and sleep, which, I feel like goes with my head issues) to improve, I would be SOO close to feeling mostly normal.
Any thoughts?
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Phoiph
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posted
HW88~
I remember that feeling well.
IMO, the answer is: "It takes time". With mHBOT, symptoms resolve in their own time and particular order...and it may not be the order we would choose.
I found that some of the earliest, worst and most longstanding symptoms were among the last to resolve, but to my surprise, resolve they did.
Also, make sure your diet is in order, along with graded gentle exercise. I can't emphasize the importance of these two pieces of the puzzle enough. The gut rules the head!
Posts: 1984 | From Earth | Registered: Jul 2013
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posted
Hi HW88- Glad Phoiph could help with that.... Hang in there...
Well, most of you all know that I was thinking my hypo had reared its head - well it did...
I had my doctors appt. yesterday and my TSH was 5.0. It is supposed to be between 1-2. Thus, he has me on a new regimen supplementing my natural desiccated thyroid medicine (T3 and T4 combo.) with T3. I am SO thankful.... I was definitely at my lowest...
Thanks for all of the encouragement here. Onward and upward....
Way to go, Reminder on the Keto! I am all in and I don't think I will ever go back. I wouldn't say that I try to get deep into ketosis but ketosis definitely works for me!
Keep going strong O2 Team!
Digby, Jolley, soccermama, Kgg- any updates. Thinking of you all!
Posts: 859 | From Southeast | Registered: Mar 2011
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kgg
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posted
TSH of 5!! You must have been dragging big time!
I am hanging in there. Maine is finally having summer weather in the last couple of weeks. I was beginning to wonder if it was going to be the summer that wasn't.
In the process of finding mold and having it remediated in our home, we have come to the conclusion to down size. My husband had his heart act up. Which made us all evaluate the what if's? So we found a home. Now we need to sell this one.
I continue to dive daily except when I wake up stuffy. So about once a week I miss a day. Not sure what is making me stuffy at night. I have rag weed allergies but they are not out yet. At least I don't think it is.
Hope every one is having a good summer.
Posts: 1770 | From Maine | Registered: Jun 2004
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posted
Hi everyone, I need to catch up on this thread, but for now I need help with what could be an urgent question:
My compressor gets VERY hot to the touch after a 1.5 hour session. So hot I could only touch it for about 3 seconds before I pull my hand away. This obviously scares me since, if it lit on fire while I was IN the chamber, I wouldn't even know it. Can people confirm if this is normal, or an issue and I should get a new compressor?
Thanks for your input.
Posts: 123 | From Tahoe | Registered: Oct 2016
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posted
Yep, KGG 5.180- crazy. I knew I was in the dumps. Worse though are my titers EBV. EBV Ab VCA, IGG was greater than 600 (the range is 0-17.9) Yikes, I am cringing typing this. My CD 57 was 82. I don't have an old one to compare to.
He has me taking monolaurin, L Lysine and something called Immucore for 90 days. My EBV acute infection IGM is negative. So this is an old infection obviously.
Enough on all that. I am in the right hands now.
With regard to you waking up stuffy -- well, honestly, if you are re-mediating mold.... that is very likely the cause if you were me... I always get stuffy with mold. In the deep southland here it is humid and moldy.... I run dehumidifiers as if they are non negotiable here because they are.
That sounds like a good plan to downsize, take off some stress and find a MOLD FREE home if you can. Do check the air system. Folks forget to check that and if it is in the ducts or system itself-- well, it spews out. I had a 20,000 dollar remediation because of an old air system about 6 years ago. And sure enough, before I figured it out, I was stuffy and my allergies were going nuts.
Hang in there KGG! All of this sounds like it is coming to a good end. Enjoy pitching things and donating what can be used (or selling). We don't need so much stuff anyway.
Thanks for the encouragement. I think higher ground is in the works for the both of us and this team as a whole...
Soccermomma, I sure hope you are feeling better.
Digby, do you have any suggestions with my EBV rearing its head other than what I have been given (up above). You may know of my doc, Dr. S who wrote a chapter in the Stop the Madness Thyroid book and is also an ILADS dr. God bless him. He is getting filled to the gills here.
Thanks for all team... you rock!
Hey, sweet Phoiph, any suggestions on my recent blood work? HUGS ALL!
Posts: 859 | From Southeast | Registered: Mar 2011
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Phoiph
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quote:Originally posted by BryanRosner1: Hi everyone, I need to catch up on this thread, but for now I need help with what could be an urgent question:
My compressor gets VERY hot to the touch after a 1.5 hour session. So hot I could only touch it for about 3 seconds before I pull my hand away. This obviously scares me since, if it lit on fire while I was IN the chamber, I wouldn't even know it. Can people confirm if this is normal, or an issue and I should get a new compressor?
Thanks for your input.
The oil-less smaller compressors do get hot.
It helps to allow air circulation around the compressor, and place it on a hard surface (rather than carpet, etc.). Make sure there are no kinks in the tubing, and check the air intake filters (the 2 black spheres) to make sure they are not clogged. These can be unscrewed from the compressor, then twisted apart (sometimes difficult to do). There is a paper filter inside that can be dusted off if necessary.
I would also check with the Oxyhealth technician at 877.789.0123.
Posts: 1984 | From Earth | Registered: Jul 2013
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posted
Thanks,Phoiph,for always saving the day! Bryan, I hope everything is a- okay with your compressor and you are making strides!! Posts: 859 | From Southeast | Registered: Mar 2011
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posted
It's been a few months since I've posted. I've been busy with work, treatment, exercise and fun. I'm still trying to find a good balance in my life and ensure I'm getting enough rest to stay strong.
Here's my latest update video. I hope everyone is still experiencing gains and a new level of health.
Phoiph
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posted
Hi Survivorgirl1~
My best advice would be to talk with the surgeon who is placing your PICC line.
Let them know you are doing mild hyperbaric with supplemental oxygen, and at what pressure, and ask if there are any precautions (e.g., regarding air in the line, etc.).
I'm glad to hear that you are doing better than 3 years ago, but very sorry you are still struggling.
There are very knowledgeable and helpful people here that may have suggestions if you feel inclined to share an update...
Posts: 1984 | From Earth | Registered: Jul 2013
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kgg
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Peimomma, thanks for posting your update video. It gives great encouragement to watch them. There is hope!
I am thrilled to hear that your c4a is within normal range now.
Quick update: I keep saying I need to sit down and count what # dive I am on. My record keeping since last Fall has not been efficient. We listed our house yesterday. We found a new one in the same general area. So my near future is going to be maintaining a show ready house and packing. Ugghh. I said I would never move again. Never say never!
The symptoms that I am most aware of are short term memory issues, chills and low energy. I think the low energy has a lot to do with moving yet again. I also dropped my T4, the chills and low energy could be from that. I have not had my levels checked in a while. It also could be from not taking my bioidentical hormones since April. I see my PCP in a couple of weeks. So hoping to sort this out then.
Lastly, I have not totally given up on the FODMAP diet. But I have eased into using some good products that I used prior. My gut is not totally happy with it. I think onion and garlic are not my friend.
That's it. Hope everyone is doing as well as possible!
Posts: 1770 | From Maine | Registered: Jun 2004
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posted
Hi KGG- That sounds like thyroid to me-chills and no energy. Do you take basal Temps in the morning? That may be a good thing to bring your doc. Thinking of you - quite frankly getting out of mold will be worth your efforts- inch by inch, anything is a cinch! Thanks, Momma! How I miss her!
Peimomma! You Go! So proud of you! Yes! Thank you for doing these videos and all your help! You and Philoph are amazing! I get the struggle with balance...Thank you for all you have given to this community and beyond! So happy for you!
Thinking of this dear team- dive on! Hugs!
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
Hey KGG: I think all those symptoms may be thyroid. That is encouraging you know.
I backed off the dive time and could definitely tell a difference. I am now at my 90 minutes again and I can still feel herxing after but it tends to keep me in good shape needing the rife less (THANK YOU ALMIGHTY GOD and FRIENDS HERE- PHOIPH ) So, here's to dedication and time with his mode of treatment. Keep diving team... HUGS!
Posts: 859 | From Southeast | Registered: Mar 2011
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kgg
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Willbeatthis, so you stayed at 90 minutes?! I am glad you are tolerating it OK.
My house went under contract yesterday. So now I am in packing mode.
Posts: 1770 | From Maine | Registered: Jun 2004
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posted
@Phoiph, thanx for your reply on my question about combining mhbot with a PICC line for abx. I think my surgeon doesn’t know but I will ask! Maybe he can call with someone who does know.
@Lapis29, I also use the summit to sea shallow dive. For three years now. One hour a day. I’m very happy with it.
You can easily operate it yourself. But it’s nice to have someone around on your first few dives. The zippers also open and close from the inside. It comes with an instruction vid.
It’s nice, cosy and bright on the inside. I read books, listen to music or surf the internet on my mobile when diving.
In short: Start very slowly (minutes) and then very slowly ramp up (in months) to one hour a day. But I think Phoiph has a protocol that you can use, she knows most about it.
Most (all?) of us also use supplemental oxygen from an oxygen concentrator, that can provide at least 8-9 liters/minute oxygen. You'll have to ask summit to sea for an adapter/connector for that.
I use the airsep intensity 10liter/minute. You breath in the extra oxygen with an oxygen mask when lying in the chamber. It enhances the effect of the mhbot.
Good luck!
Survivorgirl1
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it is humid and moldy.... I run dehumidifiers as if they are non negotiable here because they are. 
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