posted
Kgg my body doesn’t do well with otc or Rx meds so I haven’t tried Imodium yet but I’ve been taking probiotics and fermented foods as well as detox supplements. Imodium is next though if this keeps up.
Carbokitty, I can usually smell mold and I don’t smell any in my house at all but that doesn’t mean it isn’t there. I’ll have to find something that can detect it.
-------------------- KB Posts: 170 | From Northern VA | Registered: Apr 2015
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posted
I haven’t updated in some time. I’d have to go back and look, but I’ve probably been using mhbot for a year and a half now.
I’m better, but it’s not a silver bullet. My immune system has an exaggerated inflammatory response to infections, and I still feel that inflammation a daily basis. It interferes with everything from cognition, to aerobic stamina.
My biggest gains are cognitive though. I have a history of brain injury and my memory, a sore spot since the last incident, has noticeably improved.
If I go on a potent anti inflammatory, I actually feel great. Normal even. But if I do that, the Babesia and the Bartonella symptoms come back, very quickly.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
Hi Charles12, Thanks for the update. May I ask the protocol that you have been following for the last 1.5 years?
Posts: 539 | From NW Arkansas | Registered: May 2003
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Phoiph
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posted
Charles12~
In addition to Digby's request, could you tell us what your diet has consisted of?
I am wondering if the continual inflammatory reaction originates in the gut.
Posts: 1885 | From Earth | Registered: Jul 2013
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Phoiph
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quote:Originally posted by Kaibyrd: So I’m pretty sure mHBOT is causing the diarrhea. We took a 5 day vacation (was planned and paid for before I started hbot) and I had no problems while away. I got back late last night so didn’t dive until today. No issues before the dive but now it’s baaaa-aack. 🙁 I have no idea what to do for it since the usual treatments aren’t working.
Kaibird~
This might seem obvious, but what happens if you take a 5 day vacation from mHBOT while you are at home? Do you still have the symptoms?
In which case it would more likely indicate a reaction to something in your home environment, not mHBOT.
Posts: 1885 | From Earth | Registered: Jul 2013
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Phoiph
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quote:Originally posted by carbokitty: Good morning all~ ...So my question is what do you record on your log of dives? I have created a spreadsheet to record the date, the time, how I felt. Then because my primary symptoms I am trying to address are my stools and my sleep, I am logging how those are the night and day after that particular dive. Also in the mix are any supplements or changes in supplements as I find those can have a substantial affect on those 2 events. After I've had more dive time under by belt, I will record an track any foods I try as I attempt to expand my diet (but for right now, I'm leaving that alone and sticking with what I know works). I'm just curious if you log anything else. Do you use a notebook? Or electronic?
Happy diving! Carbokitty
Hi Carbokitty~
You've already received great suggestions, but I wanted to add that it is important to jot down something simple/new about your daily experience that will jog your memory about that time when you look back on your log.
For example, as I was improving with mHBOT, I would write something like, "brushed dog", or "pulled weeds for 10 minutes". For some reason, when I read this back later, it evoked the feeling of that time, and I could definitely tell the difference between how I was functioning then in comparison to my current status.
Posts: 1885 | From Earth | Registered: Jul 2013
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quote:Originally posted by Kaibyrd: So I’m pretty sure mHBOT is causing the diarrhea. We took a 5 day vacation (was planned and paid for before I started hbot) and I had no problems while away. I got back late last night so didn’t dive until today. No issues before the dive but now it’s baaaa-aack. 🙁 I have no idea what to do for it since the usual treatments aren’t working.
Kaibird~
This might seem obvious, but what happens if you take a 5 day vacation from mHBOT while you are at home? Do you still have the symptoms?
In which case it would more likely indicate a reaction to something in your home environment, not mHBOT.
Phoiph, it’s gone again the past two days. I had gone back up on my magnesium while away from home. I can’t always eat well when eating out and magnesium keeps my IBS in check. I forgot to reduce it when I first got home so that could be the culprit but I thought that before the trip and it wasn’t. Since going down on it after returning back home, the diarrhea has dissipated, for now. Still waiting and watching. I’m off the mask still. My body just can’t tolerate it and let me still function so I’ll probably stay off for another week, then try 15 minutes a dive. I’ll keep y’all posted if anything changes.
-------------------- KB Posts: 170 | From Northern VA | Registered: Apr 2015
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quote:Originally posted by Digby: Hi Charles12, Thanks for the update. May I ask the protocol that you have been following for the last 1.5 years?
It depends on the period. There were times when my Bartonella would creep in. So I'd take Rifampin. There were times when Babesia was a bigger problem. And I'd be on Mepron.
I've always been on something, usually a cocktail of three or four drugs.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
Charles12...I didn't make that clear, I was wondering specifically about your mHBOT protocol.
Posts: 539 | From NW Arkansas | Registered: May 2003
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Phoiph
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And I was wondering specifically about your diet...
Posts: 1885 | From Earth | Registered: Jul 2013
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quote:Originally posted by Phoiph: And I was wondering specifically about your diet...
It’s not my diet. It’s how my body responds to infection. Inflammation and specifically neural inflammation was my first symptom.
I test much higher for IGM vs IGG.
Posts: 146 | From Virginia | Registered: Mar 2010
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Phoiph
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Charles12~
I’m glad to hear you’ve made cognitive improvements since starting mHBOT, but I understand that you were hoping for further gains in other areas by this time. In my experience, there is usually a reason for this, and if the person makes adjustments in their protocol, they can often move forward.
Neural inflammation was one of my first (and worst) symptoms also, and I’d like to offer another perspective on a possible contributing cause of inflammatory cycle you’re experiencing. It is just my theory of what might be happening, based on what I experienced and have observed in others.
As I'm sure you know, most of the immune system and neural system resides in the gut, it can often be the source (sometimes hidden) of a cyclical inflammatory response in the body.
Due to many causes (infections, prescription drugs, etc.), the junctures in the intestine become damaged/leaky, allowing proteins to pass through into the bloodstream, which cause an ongoing immune reaction, and continual inflammation in the body.
If the gut is not allowed to heal (and the junctures to become tight again), the inflammatory response will continue, and sometimes it is even mistaken for inflammation from the infections themselves.
So, from what you’ve said, IMO, what could be happening is this:
You have ongoing inflammation (from infections, leaky gut, etc.) and take a “potent” anti-inflammatory which makes you feel better temporarily, but this further irritates and inflames your gut and flares your symptoms. You take more drugs to fight the Babesia and Bartonella, which further affects/disregulates the gut/immune system, and the cycle repeats itself.
IMO, it is crucial that mHBOT is combined with a scrupulous, gut-healing diet, and gradual weaning of the potent anti-inflammatory and anti-microbial drugs (with doctor’s guidance) once some initial improvement/strength is achieved with mHBOT. Graded movement/exercise to move lymph is also totally necessary.
Once these adjustments have been made, the immune system will have a chance to normalize and stop over and under-reacting, and will be better equipped to deal with infections as it was designed to do. At this point, I would be optimistic that the inflammatory cycle could be broken, and further gains made.
Posts: 1885 | From Earth | Registered: Jul 2013
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posted
I initially used the chamber as a mono therapy. This was true for the first eighth months. It was only when my condition began to deteriorate that I resumed medication. There were no major changes in that period. My symptoms just started creeping back in.
I also treated my Lyme within two weeks of the initial tick bite. I wasn’t treated for Bart or Babesia at that time. But in the scheme of things I received fairly prompt and aggressive treatment. I was on antibiotics for four straight months after the bite. And I did two months of rocephin at the six month mark.
Posts: 146 | From Virginia | Registered: Mar 2010
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Phoiph
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Hi Charles12~
Thanks for the background.
So, my thoughts are still the same...the gut would need to be addressed, especially since you had been on 6 months of antibiotic therapy, which certainly affected it.
I am quite certain I wouldn't have become 100% well with mHBOT if I hadn't also focused on gut healing. IMO, diet goes hand-in-hand with this therapy.
Posts: 1885 | From Earth | Registered: Jul 2013
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posted
I have to second Phoiph’s gut healing information. I went about mine differently using 4 months of Chinese herbs cooked up for me specifically and all that I was struggling with from meds, Lyme, inflammation and more. Each patient was treated differently after evaluation. He is a Korean acupuncture and Chinese herb doctor. He does not treat a diagnosis but symptoms and evaluation of the body.
Charles12 are you still on antibiotics? Why don’t you want to post what you’re eating? It’s hard for people to help with suggestions if we don’t know what your protocol is from treatments to food, sleep, exercise, medication and supplements. Have you been at full pressure with oxygen since the first treatment? Have you treated every day or do you take days off between treatments?
No judgment, we like to know all the information to help give accurate suggestions.
Posts: 233 | From AZ | Registered: Jan 2015
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So, my thoughts are still the same...the gut would need to be addressed, especially since you had been on 6 months of antibiotic therapy, which certainly affected it.
If my gut was the issue, I wouldn’t have relapsed.
Posts: 146 | From Virginia | Registered: Mar 2010
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If my gut was the issue, I wouldn’t have relapsed. [/QB][/QUOTE]
How do you figure that Charles12? I would like to understand.
Posts: 539 | From NW Arkansas | Registered: May 2003
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Phoiph
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Charles12~
I did a history search and read all of your previous posts to try to get more background.
Your posts indicate some great progress! I truly hope you will allow us to help you try to figure out what might be holding you back.
Posts: 1885 | From Earth | Registered: Jul 2013
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Despite my fears of sinus and ear trouble, I decided to just try mHBOT. I couldn't find anywhere around where I am in Australia that does ozone therapy cheaply - theres just a Russian doctor who charges $250 a session. Whereas mHBOT is $30 for an hour. I may consider buying a chamber later if it looks like its helping.
I started slow like recommended here. It was a chamber that only goes to 1.35, and i stayed at 1.2 for ten mins, then 1.3, then 1.35. Just finished my first session an hour ago and I feel pretty good afterwards!
Definitely felt popping and crunching in my ears and sinuses (but that's not new), but it wasn't too severe. I used "Ear Planes" which may have helped things.
But I'm hoping if anything the HBOT will help my sinus situation. Everything is so blocked up there it feels like. And I know MARCoNS doesn't like oxygen, Chlamydia pneumoniae doesn't like a lot. I'm not sure about the penicillium fungus they found in my nose, but I figure the immune boosting effects of HBOT should ensure its a more positive than negative influence, in the long run.
Apart from this, I felt quite relaxed and clear minded in the chamber quite quickly. A surprising effect was that I felt my joints in various places crack during the session, in a pleasant way, giving way to muscle tension releasing. I sometimes get similar cracking effects from LLLT / red light therapy, but only in the area I use the light - this time it was all over my body, and it felt pretty good I must say.
Will keep everyone posted on how I go. Thanks again everyone for advice.
Posts: 38 | From NSW, Australia | Registered: Sep 2018
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After both sessions I noticed my sleep was a bit worse - it's already rather terrible, so maybe it was a herx or something. My newly arrived Oura ring showed a worse sleeping score. However my heart rate variability and pulse rate were showing a beneficial trend. In addition, maybe TMI... but on the second HBOT session after a night of insufficient sleep, I noticed I got a spontaneous erection in the chamber.. which is usually only something that happens in the morning / sometimes when I'm napping to catch up on sleep.
The guy at the centre said an hour of HBOT gave similar effects to a few hours of sleep. Of course I don't really believe he knows exactly what he's talking about, but maybe it is having some sort of similar effect on me. Or on my... errr, private parts at least.
But the thing that has concerned me is that after both sessions ive had a moment in the night where I felt some mild heart pain. Only briefly, but concerning. Similar sort of thing I experienced once or twice after taking NAC, actually. Maybe to do with oxidation / blood vessels, maybe something to do with my CPn infection (both HBOT and NAC should kill CPn). I'm not sure.
For now, I'm going to only dive every second or third day or so.
The place where I can do the mHBOT is also temporarily offering free molecular hydrogen along with HBOT at the moment. It can function as a selective antioxidant which I read can be beneficial and synergistic with HBOT, unlike other antioxidants, so i might try that next time I dive, before I go into the chamber.
kgg
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posted
OzLyme, I dive first thing in the morning or at the latest before noon because I find that diving delays my ability to fall asleep. As I continued on in using the chamber I found that even though I did not have great sleep, I would still feel more rested and energized than if I wasn't diving.
I am wondering if in the middle of the night you are having indigestion and not chest pain? Sometimes they are hard to tell apart. Maybe try an antacid when that occurs and see if it helps.
Posts: 1686 | From Maine | Registered: Jun 2004
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Phoiph
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OzLyme~
Can you provide a source for the info you read about molecular hydrogen being beneficial and synergistic with HBOT unlike other antioxidants?
I would like to read more about it...thanks.
Posts: 1885 | From Earth | Registered: Jul 2013
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They mention that when hydrogen is given to healthy individuals their redox status doesnt change, whereas those undergoing oxidative stress see their antioxidant markers improve. It also seems to target the hydroxyl radical, which is the most damaging, and leave alone the other ROS used in the body's signalling. So the idea is that it can function as a "selective" antioxidant.
However it is a Dr Mercola video, interviewing a man involved in the hydrogen "scene" (though not selling products apparently). So I obviously take it with a grain of salt, and am waiting to do more research. I just played this interview on the way to the mHBOT centre to give myself some background info on molecular hydrogen.
Oh and they don't mention HBOT here specifically - they mention that hydrogen should be a good compliment to oxidative therapies in general. Drinking hydrogen water before an ozone sauna is the example they give.
posted
Ozlyme, I watched that video a while back and was wishing they had given links to studies that support the position of selective antioxidant action of molecular hydrogen. They also mention that it works at the level of the mitochondria, which is true of mHBOT also.
I have a Hydrogen water maker. Used it for about a month but didn't see any effects, so I quit drinking it on the off chance it adversely affects the upregulation of endogenous antioxidants from the HBO .
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
I'm not 100% sold on hydrogen myself, as this is new to me. I'm probably in the "curious and hopeful" stage of learning about any new treatment. We've probably all been there, and know for the majority of treatments, it doesn't last!
But I think the idea is that hydrogen shouldn't interfere with endogenous antioxidants at all, since it's not an antioxidant in general, it just neutralises the hydroxl radical and maybe a few other particularly damaging oxidising molecules. And the fact that it's produced by the bacteria in the stomach in healthy individuals, is comforting.
I need to learn a lot more about it before deciding, however.
Posts: 38 | From NSW, Australia | Registered: Sep 2018
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I've done 35 1-hr dives. Not consecutively because I had to be away this past week. I returned Sunday night. I am thrilled, though, that my stools have remained formed, despite missing 8 days in the chamber. My sleep remained good and my gut remained good. I did hit a wall on day 6-just exhausted. But that only lasted a day.
I am back home and diving again and happy to be doing so.
I have a question, though. I have been letting a friend try my chamber. We started with a 20 min dive. A week later we did 30 min. And she was handling everything fine and feeling really good afterwards (good energy, good sleep) so we went up to 60 min on the 3rd dive which was about 5 days after the 2nd. Using supplemental oxygen the whole time. She experienced some fluid retention and joint pain after this last dive which persisted. She has never pursued a Lyme diagnosis-but she has been diagnosed with fibromyalgia and arthritis. She is also diabetic and has high blood pressure and is overweight. Some depression (well managed now) She has had a "high risk" lifestyle for Lyme-camping, canoeing in the north woods where Lyme is prevalent. Anyway, from listening to all of you, I suspect she has Lyme or some sort of tick borne illness that is undiagnosed. Her symptoms sound like a herx maybe. What do you think? I suggested we back off to 30 min today. I am waiting to hear how she feels. Any other thoughts on her reaction and/or modifications we can/should make?
Thanks for all of your support! Carbokitty
Posts: 118 | From WI | Registered: Apr 2013
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Phoiph
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Carbokitty~
Here are my thoughts.
mHBOT is a cumulative process. Each dive builds on the last dive, but the dives must be close enough in time or consecutive to benefit from the cumulative process.
By spacing the initial dives out so far (i.e., 5-7 days apart), it is really like starting over each time. So, for your friend, although 20 or 30 minutes was OK, 60 minutes was too much for a "first time" dive.
IMO, it would be better to do shorter, daily dives on consecutive days and work up to the full hour as slowly as necessary, only skipping days if needed in the beginning (i.e., due to too much of a reaction). Once at the full hour, then become very consistent.
Dr. Harch has recommended no more than a 2 day consecutive break for initial treatment (i.e., 5 days on, 2 days off, but I often wonder if 7 days would be recommended more frequently if clinics were open on weekends.) I have also read that it takes at least 80 consecutive dives before changes are maintained in the body.
Posts: 1885 | From Earth | Registered: Jul 2013
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posted
Makes sense. Thanks Phoiph. It does beg the question, however, as to whether there were any studies done on the 2 day break or if that was arbitrarily set for the convenience of the doctor, staff and clinic. I.e. is it really better to have no breaks, ok to have 3 days break, or is it still effective to dive even every other day? And I would guess it’s all dependent too on what one is treating. Carbokitty
Posts: 118 | From WI | Registered: Apr 2013
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posted
My friend just did a 30 min dive (full O2) yesterday. The swelling and pain in her joints came back. She is also a little queasy and "off". Any ideas?
Carbokitty
Posts: 118 | From WI | Registered: Apr 2013
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posted
Thanks KB. Will try that. Carbokitty
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kgg
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posted
She sounds she could be a candidate for Lyme. Many "Fibromyalgia" patients have Lyme but don't know it. I like that start low go slow
Posts: 1686 | From Maine | Registered: Jun 2004
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After weeks of reading I have finally completed this entire thread. I wanted to say thank you to all who have posted their stories and also say a hello to the lurkers, as I was until now, who follow this thread.
I confess, towards the last few pages, I started to feel a bit of anxiety, as the stories I have read have offered me hope that I may one day get better. As I went from page to page, and saw your updates and histories, each new page offered hope and encouragement, and a bit selfishly, I did not want the pages to end.
I see myself reflected in so many stories here. My story is I have come to believe I been sick since I was in my teens. I went un/misdiagnosed for many years, until, like many, I narrowed my issues down to Lyme (have vague memories of a bad insect bite as a teen camping). Managed to get my blood sent to a US lab (I live in Canada) and it came back positive for Lyme and co-infections. I am in the club of 10s of thousands of dollars spent, over the years trying to get well, or better at least. A few years ago I thought I was on my way out, looking positively skeletal, GI issues (antibiotics were hard on me), and no appetite, super fatigued and mush for a brain.
I decided to look into oxygen therapies as a kind of last hope of stopping my decline. I looked at ozone (MAH) and hyperbaric. At the time I decided to go with ozone and I feel like it saved my life. Even from the first treatment I could feel the fog and fatigue lift from my body and at the end of 6 months I was having people tell me how great I looked. I did feel better, not great, still lots of joint/muscle pain, but my weight is back on, GI issues cleared and I could read and think again at a level that was tolerable.
That was 4 years ago and although I am maintaining, I am not advancing, after the initial progress, in any meaningful way I can discern. I came across Phoenix Rising and that lead me to here. After reading the first page I knew I was going to go diving.
I purchased a chamber, Airsoak model “Nova” and have been diving for 43 days. Made the decision to purchase the Nova, as living in Canada, 1.5 ATA is permissible and the Nova is built for higher pressures and ships with both 1.3 and 1.5 ATA valves. One on the earlier links posted in this thread showed a graph where it showed 1.5 ATA at the top of the bell curve for oxygen saturation, and if I figured it couldn’t hurt to have that option.
Thanks to you guys, and especially Phoiph, I had clear path to follow on just how to correctly do this. I was even more conservative than the recommendations, I started my first dive at 1.15 ATA (the Nova has both internal, and external, pressure gauges, and I used the internal relief valve to control things manually) for 15 minutes. I did this for 3 days, and then went to 1.3 ATA for 4 days at 15 minutes. Then added 5 minutes every 3 days until I hit 30 minutes, this was done with oxygen flowing into the chamber, but not directly breathing it
At thirty minutes, I decided that I would start to slowly add oxygen to my dive sessions; I would start with 5 minutes and increase every 3-4 dives. However, after my first oxygen session I had an attack of vertigo. Now this was not my first time experiencing vertigo, but not for many years. It unsettled me a bit, so I went back to diving without oxygen with the idea of working my way up until 1 hour, then adding back the oxygen when I reached there. Things went smoothly for me, uneventfully working my way up until an hour and then when I added back the oxygen once again, an event, I suffered a panic attack later that night, first in over 2 decades. As an aside, I would add that my dreams had become more vivid, not nightmares in any way, just colourful and “bright”.
The panic attack did not unsettle me too badly, not as much as the vertigo did, as I had them for many years, about 20 years ago, so I knew what I was experiencing (after being diagnosed I learned panic attacks/vertigo were not uncommon in Lyme patients). So once again I returned to diving without oxygen, trying to settle in once more. After a few days, I decided to try to add back in the oxygen, but this time I changed things up. Instead of starting it at the beginning of the dive, at full pressure, I am now doing it at the end. I have been adding 1 minute each day and today did 5 minutes with no issues, feeling good so far. I figured if I started at the end, the oxygen I am breathing will not be under pressure the same way starting it at the begging would have it, giving my body more time to becoming more acclimatized to getting saturated with oxygen. I will be adding a minute a day over the coming weeks until my oxygen matches my diving time.
My thoughts are that this is a very powerful therapy, to be treated with a lot of respect. I started out with what I thought was a conservative program, but those critters in me let me know they did not like me poking at them with oxygen under pressure. I say under pressure because I have breathed pure oxygen before for long periods of time, over the years, and never had any aberrant reactions at any time before,
I figured I will give this at least a year before I make any real pronouncements on its effectiveness for me, I have been ill with this disease a long time and I am prepared to give mHBOT the time it needs to hopefully help me become well/better again. Plus, I kind of enjoy the quite time alone inside the chamber.
posted
Welcome Jazzman! Sounds like you are approaching mHBOT sensibly. Most of the health gains are seen in retrospect with this therapy, so giving it a year before making a judgement is smart. My only suggestion is to continue going slow but don't micromanage your symptoms as long as they are tolerable. Symptoms will come and go at any level of treatment. Wishing you the best!
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
Welcome Jazzman! I agree with Digby, symptoms will come and go. You’re doing great with your slow approach. I didn’t know mHBOT should be approached this way when I first started diving in January. I got up to the full hour quickly but about 5 weeks in I had a bad setback. I started over and just got up to the full hour, mask on this week so maybe now I can start counting dives. I’ve had better sleep ever since I started in January though so even when we’re not up to full prescribed dive, we’re still getting results.
-------------------- KB Posts: 170 | From Northern VA | Registered: Apr 2015
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posted
Thanks for the welcome. I agree, and over the years I became use to symptoms coming and going, various "herx" reactions, and won't try to micromanage them to any real extent diving. It was just odd to have vertigo, then later a panic attack raise their head. I am actually taking this as a sign of the treatment having a real effect.
Also, as I think may have been mentioned here before, people with TDB react to oxygen under pressure much different than people treating TBI injuries or other kinds of diseases. I am in full agreement low and slow is the way to go and why I am thankful for those who have gone before laying out plans how to best do this to mitigate negative reactions to the therapy.
posted
Hi all~ Welcome Jazzman! And happy diving! The answer to my question is probably in the conversation above with Jazzman-but I wanted to ask. I mentioned recently that when I was on a week break due to travel last week, I felt really good for 6 days and then I hit an exhaustion wall on the 7th. I just figured it was from being away from mHBOT. But then I got home and was exhausted and thought it was just from the drive. I started diving and have been back diving for 5 days. I just want to sleep all the time! I have not recovered that feeling of being energized the next day like I have since I started diving in January. (on and off due to access to mHBOT until I got my chamber in mid-April). I am doing 1 hr dives with oxygen at 1.3ATA. Is this a normal dip? I wonder why it started when I wasn't diving and has continued even after I've resumed diving? I sleep like a log now, since last Thursday but feel like I can sleep some more whereas I was waking at 5:30am previously (since diving). Thoughts?
Thanks to everyone here! Carbokitty
Posts: 118 | From WI | Registered: Apr 2013
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Phoiph
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posted
Welcome, Jazzman,
I very much appreciate that you read the entire thread.
Thank you for the kind words, and sharing your observation regarding wearing the mask toward the end of the dive rather than the beginning (when working up) to allow the body to acclimate. Makes sense!
Posts: 1885 | From Earth | Registered: Jul 2013
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Phoiph
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carbokitty~
I think you'll find there will be many phases, 2 steps forward, one step back, throughout your experience. It is not unusual at all for some people to feel energized in the beginning, then tired for a period of time.
When your body is healing, it needs rest, and this is what it is currently telling you.
The advice that Digby gave Jazzman is right on: don't micromanage your symptoms (over the short term) as long as they are tolerable, they will come and go at all levels of treatment.
Over the long term (i.e., months), you should see a general pattern of improvement (with ups and downs along the way).
Posts: 1885 | From Earth | Registered: Jul 2013
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posted
[*This post is amended. I spoke to soon. I am reacting badly to the masks/tubing, and it does still smell. <sigh> It was a good idea. It just didn't work.]
I may have discovered something, only time will tell. I am very chemically sensitive, and also probably have a mast cell disorder. I was not pleased with the smell of the plastic masks and tubing that I got recently. They would be very hard on my sensitivities. I laid them out to air, but after two weeks, I wasn't making much progress. I started searching on-line for ceramic masks and tubing for chemically sensitive, but I wasn't making much headway there either.
Then one night I spied a post somewhere (I forget where), where a chemically sensitive person said they soaked their mask and tubing in water and baking soda for four days, and then it was fine for them.
So, I tried it. And bye golly, it seems to have worked ! It does seem to make the mask a bit less flexible, and therefore may limit its lifespan. It also turns the mask and tubing a milky white, instead of clear. But it does not smell anymore, at all. And I used it for ten minutes this evening with no reaction at all.
So, just thought I'd pass that along. Maybe others can try, and we'll see what develops over time.
posted
Elsworth, yay! I’m so glad you found a way to make your mask usable!
Carbokitty, I’ve been doing something similar to you only it hit me earlier. Probably because I’m diving every day and you weren’t able to. I started about the same time you did. I had about 5 or so weeks of a bit of an increase in energy but then I crashed. I went off the mask then tried to incrementally increase the time with mask on. Got up to the hour for a week or two and crashed again, too much fatigue. I tried again and got up to an hour last week and I seem to be doing much better this time. I think the fatigue as well as other symptoms are just going to come and go as they please in maybe the first year of treatment. We just have to keep trying.
-------------------- KB Posts: 170 | From Northern VA | Registered: Apr 2015
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posted
Thanks KB. I have absolutely loved the oxygen but think maybe I need to try backing off of it a bit. I’m sorry you’ve had those challenges but glad you are willing to talk about them and experiment since it gives me some direction.
I also realized just this evening that I had increased my magnesium glycinate about 2 weeks ago because my stools were getting harder to pass (almost amazing to think about for me) and maybe going back to the higher mag is also relaxing me more and making me sleepy. I had been on this amount previously but I think with all my intestinal issues, I wasn’t absorbing it. It may just be too much for me now. So I’ll try tonight at one tab less and also dive tomorrow without o2.
Elsworth-Congratulations! That’s great news! Carbokitty
Posts: 118 | From WI | Registered: Apr 2013
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posted
Phoiph, I do think it's important that anybody that is considering purchasing a chamber, and diving, read the entire thread, I personally feel that there is a large amount of information, and insight, which will be missed without doing so.
Posts: 16 | From Canada | Registered: May 2019
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Carbokitty, my sleep is all over the place these days. I’ll go from waking up early and rested feeling for several days to sleeping 12 hours with a couple wake ups during. I think it’s just my body needing more sleep to heal.
I keep having to adjust my magnesium too, down and back up. Good news is, I also had to adjust my thyroid med down in dosage! So y’all keep an eye on your blood work, every 3 months. I feel much better since my doc lowered my thyroid med!
-------------------- KB Posts: 170 | From Northern VA | Registered: Apr 2015
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Jazzman~
As Peimomma will attest, I used to ask everyone who inquired about mHBOT to read the entire thread before we went any further, but now that it is 43 pages long, I realize it might be too much for some people.
That said, if you only read the last few pages, you miss so much background information.
That's one of the reasons I repeat myself ad nauseum (for the newcomers), but I realize this gets old for the more experienced people, and truly wish that everyone would do their best to read the entire thread as you did!
Posts: 1885 | From Earth | Registered: Jul 2013
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
elsworth~
For stainless steel and ceramic masks and tubing, contact The Environmental Health Center of Dallas:
Environmentally Friendly Products (including ceramic & aluminum oxygen masks/tubing for for people with chemical sensitivity): http://www.aehf.com/
I noticed that they might be in the process of changing websites/online stores. Their recording also mentions a different website:
I would call them. If they don't have what you need, I'm sure they will refer you to a resource.
Posts: 1885 | From Earth | Registered: Jul 2013
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posted
Phoiph, yes, I did see you having to repeat yourself over the thread numerous times, and while a pain in the the behind for you, I am sure it has been tremendously helpful for people, with mush for brains, as I and many others have had at times, who just can't manage to get through the whole thread. Also, I just wanted to say that the patience you showed at the beginning of this thread was for me noteworthy. Without your even keeled temperament this thread could have gone off the rails and ended years ago, which would have been a real shame, and a loss for us all.
Kaibyrd, have you ever tried melatonin to help with your sleep issues? For me, I can narrow down the supplements that have been truly helpful for me down to a small handful and melatonin is one of them. I should mention that many companies make it in a 10mg pill dose and if you do some reading you will find that this may end up causing issues, as this dose is high one for many people. I use a sublingual spray that doses at 1mg per spritz/spray, I use 3mg when needed, but you could start at 1mg and go from there. There are a few makes on Amazon to choose from, if you find it is not available at your local health food store.
Posts: 16 | From Canada | Registered: May 2019
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posted
Hi Jazzman, Yes, I’ve used melatonin. Never more than 3 mg. Those 10 mg pills are way overkill. I don’t use it much any more because the liquid form I take at 1mg can be too much if used every night. I’m actually sleeping better now than before mHBOT so I’m only taking my magnesium, progesterone (bio-identical) and ashwagandha before bed. Some nights I have trouble falling asleep but it’s not too bad. Some days I have trouble waking up but I just figure my body is repairing and needs the extra sleep for now.
-------------------- KB Posts: 170 | From Northern VA | Registered: Apr 2015
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posted
Hi Jazzman, Yes, I’ve used melatonin. Never more than 3 mg. Those 10 mg pills are way overkill. I don’t use it much any more because the liquid form I take at 1mg can be too much if used every night. I’m actually sleeping better now than before mHBOT so I’m only taking my magnesium, progesterone (bio-identical) and ashwagandha before bed. Some nights I have trouble falling asleep but it’s not too bad. Some days I have trouble waking up but I just figure my body is repairing and needs the extra sleep for now.
-------------------- KB Posts: 170 | From Northern VA | Registered: Apr 2015
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Good to hear that you have a good handle on melatonin and that you are managing with your sleep.
Posts: 16 | From Canada | Registered: May 2019
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posted
Today makes one year since I’ve started daily one hour mhbot, missed only a few days with a Newtowne 27 inch with the 10LPM oxygen concentrator. Some health history: First symptoms in Feb., 1997. After 15+ doctors diagnosis in 2008. Multiple different antibiotic combos with Mepron/Azithromycin most promising/harsh. That fails to get it all and leaves me magnesium deficient, with leaky gut, and poor gut flora. Switch to herbs, sauna, other alternative methods. Still getting worse, forced to quit work, and self diagnose Heriditary Hemochromatosis (iron overload) from a wellness test and 23andme data. By this time it took 34 pints of blood drawn over 1.5 years to lower stored iron back to normal. Unfortunately some permanent tissue damage with iron storage occurred around eyes/sinus. In 2001, pre-lyme diagnosis, I had an MRI with Gadolinium contrast. Much/most of the contrast did not leave my body in 24 hours as promised and is still there today. Effective Gadolinium chelation strategies are unknown at the moment as well as impact on health. One article cites mitochondrial damage from retained gadolinium.
If I can offer constructive feedback – If you have heavy metal issues you should proceed cautiously or not at all with oxidative therapies until the metals are chelated. If you have iron overload (HH) then you likely monitor Transfer Saturation and other iron metrics. If your iron isn’t under control via therapudic phlebotomies then don’t risk “rusting” yourself. I unknowingly let TS get to 80% while using the chamber – don’t kill your brain. Fortunaly, statistically(1 in ~200) hardly anyone reading this thread will have HH but be forewarned if so.
In general after one year – some things better, some worse. After 10 months with the chamber it seemed I was making some progress with tendons (probably borrelia), skin was clearer (no more Bart? bleeders and maybe some pre-cancerous areas improved, and prostate was improved – soreness mostly gone. However, my air hunger was getting much worse though so I decided to pulse Atemisinin to try and address that. Past experience though – Artemisinin alone is not enough against Babesia. This was concerning since in some circles HBOT is contradicted for Babesia. I tried full on Keto but ended up with acid reflux so backed off that. Also apparently from a genetics guy I have some snp that affects fat processing. You know how it is – what works for one not necessary for another.
What’s next/questions – My inner most layers of Lyme are the tendons or damn Babesia in my red blood cells. After a year of mhbot I think I’ve made a couple steps forward but this major step back – air hunger, is unprecedented and very scary. Can mhbot overcome mitochondrial damage with Gadolinium retention? I have some lead too and am hopefully, slowly, chelating that. Any others on the thread with known metal issues (MRI with contrast). Thanks everybody for posting! It’s been very encouraging and informative.
-------------------- Mike R. Posts: 2 | From KS | Registered: Jun 2019
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posted
Hey ironmike, thanks for the update. Have you looked into IP-6 for iron chelation? At this point it may help to maintain appropriate levels.
I also have heavy metal toxicity, mainly mercury and lead. Multiple Gadolinium infusions left me with vertigo and tinnitus. I have tolerated mHBOT well over the years but I did have pretty severe air hunger during the first year of diving. I still occasionally have mild air hunger all these years later.
It does make sense to remove the excess iron before doing oxidative therapies. Good luck to you.
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
Thanks Digby, this is some more encouragement I was hoping for from you trail blazers So many unknowns with Lyme and various health histories. Even with this increased air hunger I've had enough hints of other improvements to keep at it. Hopefully a positive update in a few months.
-------------------- Mike R. Posts: 2 | From KS | Registered: Jun 2019
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posted
Hi ironmike, thanks as well for your update. I, also have episodes of air hunger and they always do pass. They can be a bit disconcerting, but like panic attacks, when I was experiencing them years ago frequently, once you know in your mind to try and relax, and literally not panic too much, they always pass.
I, like many have been on AB, herbs, rife and different supplements to deal with babesia, I am hoping, as per reports here, that mhbot, given time and consistency, will finally deal with my issues with this co-infection.
The information you posted on Gadolinium was eye opening, at least for me. I have been around this stuff for a long time, and was unaware of the potential dangers it posed.
You may be aware of this below, but the Yahoo board seems very active on the subject, there may be some answers for you there on what people have found to be useful in detoxing. Wishing you success.
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Hello! I've not been very active on LymeNet for several years, although I always recommend it to people who I find out have Lyme. I've been working with an LLMD who uses a lot of ozone and then recently a chiropractor who uses muscle testing and got me on a more strict diet, and I have done the full Keto thing and am now more on a maintain.
But, I've plateaued and have now read the book, "Oxygen Revolution," read much of this thread (still need to complete THAT!), and have decided to do mHBOT, as I do have brain damage from Lyme and heart problems now, possibly also from Lyme.
I got the bulls eye rash in 1998, but wasn't diagnosed with Lyme (and co-infections) until 2005, so I've been at this a LOOOOOOONG time!
I'll be looking for a mHBOT chamber soon, as I catch up on this thread.
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
Welcome Cass A! I’ve been struggling nearly as long, 1999 for me.
Question for everyone here, how do I cool down my S2S Grand Dive? My husband and his mother got in it this afternoon after my mother and I had just done an hour dive and they had to come out at about 25 minutes because they were sweating. I have a small styrofoam container that I put ice packs in and ran the hose through but that didn’t help any.
-------------------- KB Posts: 170 | From Northern VA | Registered: Apr 2015
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posted
HI Cass A, welcome to the thread. I am pretty new to this thread as well (my first post is higher up on this page). Sounds like we may have reached the same point with ozone, my copy of "Oxygen Revolution" just arrived and I am going to start my reading of it over the weekend. I am quite hopeful, in time, I will start to feel the full benefits of this therapy take hold. I am on my 53 dive, although as laid out in my earlier posts, I am not at full therapy levels as of yet. I did reach full 1.3 ATA a few weeks back, but am slowly adding in full oxygen, with a Hudson oxygen mask, I am at 16 minutes as of today and things are going smoothly, outside of the first few starting hiccups. If I could offer any advice to you when you get your chamber take your time, low and slow as they say here.
Kaibyrd, when I purchased my Airsoak Nova there was an option of purchasing an air-conditioning/dehumidifier unit. Unlike some other cooling units that use ice, or other cooling methods, the unit I am taking about is a true electric air-conditioner. This is a link to the unit. I am unfamiliar with the hoses on your unit, but mine takes the same hosing as the Oxyhealth series, compressor seems to be the same as well. In any event, I don't think it would be too hard to adapt the unit, with correct connectors, to fit your chamber.
Also, perhaps a rechargeable fan might help like this one, lots of models to choose from on Amazon. Mounting with self stick Velcro, so the fan can go in and out for recharging.
I take various size ice packs in the chamber, with a blanket on me and lay the ice packs on my core and legs. After some experiments the ice packs need to be thick so they stay frozen. I buy the extra large freez pak from Amazon. I also move the concentrator as far away from the chamber as possible as it produces a lot of heat.
Jazzman we have a member in the FB group that is having a terrible time with the customer service at Airsoak and her AC unit doesn’t work. Do you have a good connection to the Rep she might call? She hasn’t even received manuals on how to operate.
Posts: 233 | From AZ | Registered: Jan 2015
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posted
Kaibyrd, no problem, Peimomma I sent you a PM.
Posts: 16 | From Canada | Registered: May 2019
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Kaibyrd,
In addition to separating the concentrator and compressor a bit, you can try aiming a fan in that direction to circulate the warm air they generate away (so it isn't sucked up into the units).
Posts: 1885 | From Earth | Registered: Jul 2013
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I thought I would write an update. First of all, I have great admiration for all of you who have done this for 2+ years! I am finding it requires a lot of patience and there is a huge mental game involved.
I've done 52 1-hour dives with supplemental oxygen. In general, I feel good. Most importantly, my stools are formed. I have added a few vegetables to my diet, which is quite wonderful!
After initially feeling more energized, I am now often more tired and especially after my dives. I think my liver is just overloaded with detox. (I had an annual recently and one of my liver enzymes was elevated). Since my diet is heavy in animal protein and fat (olive oil and cultured organic unsalted butter), I am trying to increase the vegetables and reduce the proteins and fat and give my liver a little break.
I had a bit of a set back last night. I went out to eat with friends at a place I've been to with them before, without incident. I explained my food sensitivities as I always do and ordered my plain hamburger patty. It seems they served me one with spices. I ate it. I shouldn't have. I was up most of the night with a burning gut and feel generally unwell today.
On the plus side, my vision has really improved. One of the tests for mold exposure is a vision test. My vision has remained blurry for these many years. I am grateful and hopeful that the improved vision isn't simply something that is just with diving and not a more permanent improvement.
And so, with the improved vision, I do feel as if mHBOT is helping me detox the mold (I did a urine test in Jan which revealed high levels of 3 mycotoxins). I am guessing, based on listening to your journeys that I need to be patient on the small intestine healing. One day at a time. Two steps forward, sometimes one step back.
Thanks for everyone's shares! I am grateful to be on this journey with you and to learn from your experiences!
Carbokitty
Posts: 118 | From WI | Registered: Apr 2013
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I'm back to ask if anyone else has experienced this small intestine burning? For me, it started post Lyme treatment. 18 months on antibiotics. Within a week of stopping the antibiotics, in the middle of the night, it felt like HOT bile was flowing through my small intestines. I could literally feel it going through the tube. After that, I developed increasing food sensitivities-and in particular, cannot tolerate any spices, black pepper or garlic (plus FODMAPS, etc). I am hopeful that mHBOT will heal this, like it heals wounds on the skin. But in the meantime, I am wondering if anyone has used any homeopathy for something like this (or anything else!). Thanks for your thoughts. Carbokitty
Posts: 118 | From WI | Registered: Apr 2013
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I did start a homeopathic remedy when I was using Mhbot but it was a constitutional for many lingering issues. I had great results.
Posts: 233 | From AZ | Registered: Jan 2015
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
carbokitty~
One of my first symptoms (before Lyme diagnosis or treatment) was severe burning in stomach/gut.
After that, the food sensitivities began in full swing, and if I ate anything with the slightest spice or acid (e.g., citrus, tomato, etc.), there would be increased pain and vibration in my solar plexus which became chronic and spread throughout my nervous system.
Diet and mHBOT healed this, but it took time and consistency with both. If you go off of the gut-healing diet, it can really set you back, like pulling a scab off of a wound.
Posts: 1885 | From Earth | Registered: Jul 2013
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posted
Carbokitty, Phoiph, I as well years ago, before being diagnosed, suffered from severe burning in the stomach and small intestine area. It turned out to be H. pylori, I mention this because I find it interesting that you had a bout days after stopping antibiotics (could have been holding things static, but not clearing). The case I had was a refractory in nature and it took months and two bouts of triple therapy and finally quadruple therapy to clear it. If you think this could be a possibility for you there is a non invasive test called the urea breath test that can diagnose H. pylori infection, mine finally went negative after the third bout of therapy.
Also, my understanding is being on antibiotics for extended periods of time for Lyme will most likely not clear H. pylori, it's a combination of a small list of antibiotics along with PP inhibitor and/or bismuth that is required. Something to think about.
posted
I also have tested negative for H pylori. My burning is definitely in the small intestine and occurs 5-6 hours after eating. I’ve been positive for SIBO-small intestine bacteria overgrowth, which has caused some nerve damage. I tested negative in January but know I still have injury to the lining. I’ll be patient with mHBOT (or at least work on my self-talk-LOL). Just looking for an adjunct therapy to speed things along. Carbokitty
Posts: 118 | From WI | Registered: Apr 2013
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posted
Carbokitty, I am glad to hear that H.pylori is ruled out for you, I hope in time mhbot will help resolve things with your GI problems. I'm not a big believer in coincidences and when you mentioned your issues started shortly after stopping AB it kinda' caught my attention. Phoiph, I remember the pains where so bad I was certain they were going to tell me I had some kind of tumor growing in there, after imaging ruled this out, I was tested for H.pylori, I remember actually being relived that for once I had a firm diagnosis on something. The treatment did eventually lead to a full resolution of my GI issues.
Posts: 16 | From Canada | Registered: May 2019
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So many unknowns with Lyme and various health histories. Even with this increased air hunger I've had enough hints of other improvements to keep at it. Hopefully a positive update in a few months.
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