posted
Phoiph, Thank You for your fast response "YOU ARE SIMPLY AMAZING"!
"This Time Around", I vow to do things even better (IE) Diet maybe 80% raw 20% cooked "Anti Inflammatory Foods Only When Possible(-:
Phoioh, you stated "What you're experiencing sounds to me like a "cytokine flare", possibly resulting from the toxins in the insect bites."
I agree with the aforementioned.....my body is fighting something "But What Exactly"? Only those who have LD truly know what "This", feels like)-:
Phoiph, I had a ton of energy leading up to this....then "Bam", after the bite my whole world got flipped upside down!
Last time as noted it started with the "Shingle Rash", and yes my brain felt like it was swollen for around five days, and I had lingering headaches for weeks afterwards)-:
I wish my family would just understand that I'm "Not Cured", and I still have allot of work to do.
I'm not "Superman", even though at times when I have energy I appear to be...just ask Haley(-:
Yes Phoiph, I agree "Rest", and not overdoing it are indeed important! I was told from the very beginning this was a "Two Step Forward One Step Backwards", process.
I myself still have a hard time with the "Step Backwards Thing"(-:
In closing so this may serve others in the future.....
I haven't been sleeping enough and have also been dealing with a multitude of "Stressful Situations".
Posts: 50 | From San Diego | Registered: Jan 2014
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Phoiph
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Yes...it is very easy to slack on the protocol when you start to feel better, but discipline is key to getting all the way back.
It is usually not just one thing that sets you back...for example, you mentioned stress, diet, sleep, water, exposure to toxins...
The good news is you're still diving and have worked up to an hour a day w/02...that's an accomplishment!
You could consider this a "speed bump"...
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Haley
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posted
Yes, looking4hope, I can attest to that. When I met you you had so much energy I was sure you had super powers. I believe my comment was - "if I could have 10% of your energy I'd be happy."
I hope the setback is brief and that the stressful situations resolve.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Phoiph, I pray to god this is a "Speed Bump". When you experienced "Speed Bumps", did you get scared (IE) "This Feels Reminiscent", of how I used to feel?
Haley, I wish I had "Super Powers", again this is surely "No Bueno".
Phoiph, wss your "Brain Fog", or "Brain Swelling, so bad at times throughout this process that you thought "Here We Go Again"?
Your right on point when you use the word "Volatile". I feel like my immune system is extremely volatile and I have to be as close to perfect as humanly possible right now or I'm going to get even sicker.
Last night was a long night....lot's of tossing and turning, weird dreams, and I was and still am "Extremely Exhausted".
As stated above I had weird dreams all throughout the night, and had to wear ear plugs to drown out the noise which I had stopped doing for some time)-:
I don't know what to say other then my brain feels incredibly inflamed)-: My brain feels clogged and I can actually feel it crackling when I'm decompressing in the chamber.
I dove again this morning for one hour with "02", and unfortunately the "Tears Started To Run Down My Face")-:
I had come so far and was making by all accounts incredible progress!
Usually the pain I experience in the morning is really bad all throughout my body, however slowly subsides as the day goes on.
The last couple days however the pain in my body hasn't been as bad, and seems to have "Set Up Camp", or migrated to my brain?
I read the "Oxygen Revolution", over the last couple days once again however I'm having a difficult time remembering things.
In closing I don't what to say other then "I'm Really Scared". My entire Nervous System feels out of whack, and I''m having a difficult time keeping my eyes open.
Phoiph, what did you drink for energy when you were really tired? I can barely keep my eyes open?
Phoiph, any "Symptom Flares", you experienced etc would be of great comfort right now.
I did admiringly take on way to much, way to soon. I however have personal obligations which didn't allow me the "Rest", I knew I intuitively needed.
In closing it's like this "Thick Layer", of Gook feeling that is enveloping my brain right now. The "Gook", feels like it's not allowing my brain to fully "See The World", as it is)-:
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Phoiph
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Looking, I wanted you to know that you're not alone..I am experiencing pretty much everything as you described in your last post.
I am 178 dives in and continue to do daily 1 hr dives with oxygen. I discontinued antibiotics a couple weeks ago and am focusing on rebuilding my body now. Mhbot. Diet. Sleep. Gentle exercise.
Stress definitely throws my body off (both physical and mental/emotional). Lack of restful sleep also messes me up big time.
Lately, I have swollen lymph nodes, my throat feels tight, my brain feels swollen and I have severe brain fog, short term memory problems, problems following simple instructions., Exhaustion, sweating with minimal exertion, etc. Also.anxiety and clouded emotions. I feel empty and dead inside, no motivation or "zest" for life. But I know this is isn't the real me, so I won't dwell on it.
WI wish Lyme recovery could be a straight road of steady improvements but I guess we have to deal with the bumpy "one step forward two steps back" journey instead, and keep hoping that we are moving in the right direction in the meantime.
Thanks for sharing your experiences Looking. Nice to know I (and anyone else following the thread) am not alone in this journey.
Posts: 96 | From USA | Registered: Sep 2013
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posted
I so appreciate you all continuing to update and post on this thread. You offer so many of us hope.
Horrific brain problems were my first and continue to be my worst symptom. Intense pressure, complete inability to think, feels like my head has been injected with a large amount of some thick poison sludge that nothing can get through, brain zaps, pain and sickening vertigo are 24/7. Had made some progress on IV but right now feels like I'm back to the start.
Now pretty suddenly my legs have begun to stop working and walking is becoming very difficult.
I am traveling to a clinic to be sure I can "pressurize" adequately and then plan to get a machine in the house. On top of all that my 13 year old daughter is fighting this with her worst symptoms being gastrointestinal and brain.
Thank you all for being here, praying and wishing us all the same success as Phoiph!! And a huge "Thank you" to her for all the guidance.
Posts: 219 | From pacific nw | Registered: Jun 2009
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posted
I know these flares are scary and they shake your confidence, but I think they are part of the process.
In my experience, they are either 1. Herxheimer reaction 2. Biofilm break down with immune system activation/herx 3. Immune system getting stronger and doing battle with other viruses/bugs etc 4. Flare of symptoms when body gets even further out of whack due to bad diet, lack of sleep, etc.
I have had flares of some of my worst and even new symptoms since starting mhbot, some really scary stuff. But overall it is helping. Its a long process, we wont get better overnight. We will still have times we will be very sick.
This is when we need extreme self care. Sleep, rest, diet, water.
Follow your intuition, get quiet, keep breathing in and out. This isnt for the faint of heart but we can get through this. Just keep going and take the best care of yourself you can.
After a really bad month I started combining the wahls protocol diet with the hbot. It significantly improved my energy. You need to give your body the proper nutrients to go with the oxygen therapy. I had always ate healthfully, but this is a whole new level.
Posts: 233 | From Hudson Valley | Registered: Jun 2010
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Phoiph
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I agree 100%, mdbq...
Posts: 1984 | From Earth | Registered: Jul 2013
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Hey All- Thanks Phoiph, Spinning, and mbdq for your input(-: Joasark I know exactly what you mean in regard to the head pressure!
I can barely eat, yet everything is still going right through me. I have zero energy, my short term memory is shot, and I just feel plain old "Sick")-:
I dove again this morning for 1 hour with 02. The pressure in my head subsided for a bit last night, however came back today, with Gastro issues.
I feel extremely bloated even though I'm living on Mineral Water, and salad right now. My nausea is hitting me hard.
I haven't felt quite like this in months. However as I discussed with Phoiph there were a number of changes in regard to my (IE) Sleep, Nutrition, Stress, Water Intake, and other factors leading up to this.
I also intuitively feel like my body is fighting something, and I'm constantly "Thirsty".
Has everyone who is doing Mhbot here experienced these "Flares"? I used to get out of the chamber prior to this last week with Tons of energy "Usually"!
I could actually feel the chamber working on my body and I knew if I was feeling nauseated etc mhbot would help.
Right now when I dive I don't feel anything. I'm trying to comprehend all of this however it's "Terrifying"!
My head was so clogged yesterday, with an added headaches however late last night it was like all the pressure came out and I had energy?
As I write this, I feel worn out, sick, bloated, tired, and my head feels "Full".
Thank you all for your input it is much appreciated!
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Phoiph
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We also can't rule out that it could be another bug...there are many (especially intestinal) going around right now.
I know with me, as I recovered I started to get colds, flus, etc., which was a good sign that my immune system was beginning to have the vitality to take on "normal" things. However, at the time, it didn't feel like a "normal", pre-Lyme cold or flu, it felt highly intensified, and temporarily brought back symptoms that I thought I had already recovered from.
That was VERY scary, because I thought I may be relapsing, or at the very least losing ground...but it was just part of the process, and I actually made bigger strides forward after the "event".
It is often said that true healing is like "peeling an onion"...there are myriad layers that must be shed, and some of them are more difficult than others.
I have also heard that healing takes place in reverse order. I found that to be true; my most recent symptoms left first, but my worst and earliest symptoms (i.e., head pressure, brain fog, insomnia, etc.) were the last to leave...but they DID leave...
Posts: 1984 | From Earth | Registered: Jul 2013
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posted
Hey All- Thanks Phoiph, Spinning, and mbdq for your input(-: Joasark I know exactly what you mean in regard to the head pressure!
I can barely eat, yet everything is still going right through me. I have zero energy, my short term memory is shot, and I just feel plain old "Sick")-:
I dove again this morning for 1 hour with 02. The pressure in my head subsided for a bit last night, however came back today, with Gastro issues.
I feel extremely bloated even though I'm living on Mineral Water, and salad right now. My nausea is hitting me hard.
I haven't felt quite like this in months. However as I discussed with Phoiph there were a number of changes in regard to my (IE) Sleep, Nutrition, Stress, Water Intake, and other factors leading up to this.
I also intuitively feel like my body is fighting something, and I'm constantly "Thirsty".
Has everyone who is doing Mhbot here experienced these "Flares"? I used to get out of the chamber prior to this last week with Tons of energy "Usually"!
I could actually feel the chamber working on my body and I knew if I was feeling nauseated etc mhbot would help.
Right now when I dive I don't feel anything. I'm trying to comprehend all of this however it's "Terrifying"!
My head was so clogged yesterday, with an added headaches however late last night it was like all the pressure came out and I had energy?
As I write this, I feel worn out, sick, bloated, tired, and my head feels "Full".
Thank you all for your input it is much appreciated!
Posts: 50 | From San Diego | Registered: Jan 2014
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Quick update To All My Friends Here(-: I feel like we are all in "Good Place", when we come to this thread for both "Hope", and "Inspiration"
After coming down with both the "Shingles And Bacterial Pneumonia", I had to increase one of my medications due to the extreme pain which wreaked havoc on every fiber in my body!
I tried cutting the medication to fast and paid the price dearly! I'm slowly tapering the medication and feel much better!
I'm currently drinking "Keifer Daily", along with both potatoes and adding rice tonight.
I feel like my stomach was getting extremely out of balance and needed an adjustment(-:
I'm also back to drinking a "Gallon Of Water Daily", and have made the commitment to Dive Five Days A Week With "02" from here on out!
Oddly enough my morning pain seems to be getting better throughout this whole ordeal(-:
My gut intuition tells me the chamber combined with 02, is wiping me out "Energy Wise".
With that being said however I feel like diving with 02 five times last week did something in regard to my usual morning pain(-:
I feel like my body is really oxygenated right now if that makes sense to any of you...LOL(-:
Thank you Phoiph for the abundance of time you give "Pro Bono", for everyone here!
The "Oxygen Revolution" is indeed a fabulous resource, however it only briefly touches on Lyme Disease and "Mhbot".
The "Real Life" experiences Phoiph went though keep me "Grinding" each and every day!
I hope you are all finding some Peace, love, warmth, and deep healing as we all continue to work at this together each and every day!
Posts: 50 | From San Diego | Registered: Jan 2014
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CD57
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Shingles and bacterial pneumonia are actually probably a good sign, horrible as that may be. This is a phenomenon that was described to me by a doc as what they see when someone's immune system is coming back online.
I don't get colds flus fevers, bugs ,etc, and I have kids. I will welcome some "other" stuff when it decides to show up.
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Haley
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CD57 are you using the chamber? Any results.
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CD57
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I have not been using it regularly but am working w/ Phoiph to try to re-commit. I work full time and have to balance family life so don't have the time I need to myself to commit to getting well. It's been very difficult.
So there's my pity party for the day.
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posted
I saw that Bryan Rosner has a chapter on mhbot in his new lyme book. Has anyone read it?
Posts: 538 | From kentucky | Registered: Nov 2011
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Haley
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Hello all of you mHBOT enthusiasts.
I received my chamber a couple of days ago. I have not used it as I was trying to arrange a SPECT scan before I start. I had hoped that the before and after SPECT would be a part of my story, however in the mean time I'm declining rapidly and need to get some oxygen!
I will document my journey here, maybe check in every 30 days. I plan to do an hour a day with weekends off.
Wish me luck!!!
[ 08-28-2014, 04:20 PM: Message edited by: Haley ]
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CD57
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Way to go Haley! We are committing right around the same time, so here's to you! Make sure to keep tea k of your symptoms and log them. Phoiph had me doing this, has been very helpful.
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Haley
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Yay CD57! I'm sooooo excited for both of us! I did one dive, but my doc sent off prescription for a SPECT scan, so I'll probably start diving next week after the scan. Will keep posting.
Phoiph is such an inspiration.
Posts: 2232 | From USA | Registered: Aug 2009
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Haley welcome and good luck! We have now about 20 people diving in this thread! Start slowly and adjust according to your respons… I’m curious about the results of your upcoming spectscan.
Spinning122 and Joahsark, a very rough time…I hope you feel better now or very very soon.
Looking4Hope, glad to read you feel better again after your huge flare.
Mbdq, thanks very much for sharing.
Thanks Phoiph for sticking around sharing your knowledge and your own experience with mhbot to help others.
CD57, I wish you calm moments to ‘lie still breathing in and out’, between juggling with illness, work and family life… Can be hard to fit it in…
Soccermama, I haven’t read Rosner’s book, but it makes me curious.
Currently I dive early in the morning, for 30 minutes, once in 2 days. Sometimes I skip a day extra if I feel too ill, it’s still pretty intense.
On the ‘diving-day’ I skip most of morning-medication (incl. herbal anti-oxidants) and take it about 4 hours later. That seems my ‘recuperation’-time, after that I get a little boost of energy. Still figuring out what works best…
-Do you guys have any thoughts about keeping some time between diving (oxidating) and taking medication or supplements?
My LLND doesn’t know. I’m his first patient on mhbot…!
-Haley, did your doc who recommended you S.O.D. while you were on oxygen from a concentrator say something about a time in between?
I feel mhbot is very supportive to my body, from a deep level. It feels good I’ve started it.
I will update when I have more experience to tell about…
Wishing you all progress, also to the ‘quiet’ divers and diving families! (who are possibly reading along) I hope you feel support from diving.
Take care,
Survivorgirl1
Posts: 16 | From Europe | Registered: Jun 2014
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Phoiph
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Survivorgirl1
Thanks for the recap! I also am following many people who are doing mHBOT, but do not choose to be on Lymenet.
I have some thoughts on your questions, based on my own experience, and what I have observed with others who are doing well.
With people who are on a lot of medications and supplements, and have not become well over time with this protocol, mHBOT appears to be a 2 phase process.
Phase 1 consists of doing mHBOT daily, with the goal of supporting the body enough through mHBOT to gradually remove as many toxic influences as possible . This includes antimicrobials and most supplements (under doctor's supervision, of course). During this time, they are focusing on improving nutrition for rebuilding and repair of the gut, immune and nervous system. (Many people are initially tempted to try to move the process along with ancillary detox therapies; but many find that this may overwhelm the system and actually interfere with their mHBOT progress.)
Phase 2 is a continuation of regular, daily mHBOT, which supports rebuilding and repair, with a continual focus on nutrition and graded exercise.
It is a simple protocol, which is ironically difficult for many to follow, because they are so used to following complex routines. It is based on the fact that mHBOT itself is very powerful, and treats so many facets of chronic illness. One of the most important benefits besides detoxification at the cellular level is improvement of immune function so that the body can resume the upper hand against invaders, as it was designed to do.
Regarding when to take antimicrobials in relation to mHBOT sessions (for those who are still on them), it would make sense to take them as far away from your mHBOT dive as possible (but again, clear this with your doctor). The same "rule" applies to acupuncture sessions or homeopathy; practitioners often recommend that you allow these therapies to "do their thing" with as little interference as possible for a period of time after the session.
There is also evidence that HBO can potentiate some medications, and reduce the effectiveness of others, so that is something to keep in mind as well.
Although it is documented that HBO may potentiate antibiotics, this may be of more practical benefit with conditions such as chronic wounds, rather than chronic illness such as Lyme disease, where people's systems are already very toxic (my observation only).
In terms of the free radical action produced by HBO...free radicals are a necessary part of the picture, because they have negative impact on pathogens (they are also produced naturally by the body for antimicrobial purposes).
It has been shown that in response to HBO, the body creates additional antioxidants (e.g., SOD) to protect our own cells from damage. There is a balance here that must be struck...too much oxygen can cause "oxidative stress", and too many antioxidants (e.g., possibly supplemental SOD) may not allow the free radicals to do their work against pathogens.
posted
Thank you SurvivorGirl1 and Phoiph as always.
Trying to recover from a major very long flare, have been taken off IV and now starting (very slowly) an aggressive oral protocol to address Bart before going after the Bb since my most severe symptoms are from horrible brain involvement, although with this last flare very "MS" type symptoms came back, not able to walk, severe body wide pain etc.
As soon as I am stabilized I plan to get the machine in the house and begin. Following this thread closely and wishing you all the BEST!
Posts: 219 | From pacific nw | Registered: Jun 2009
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I’ve enjoyed reading your success story with just doing mhbot (along with diet and eventually graded exercise). Thanks for your thoughts about time between diving and medication, let it do its ‘thing’.
I see you’re worried about people can add (more) toxins with medication and supplements. And that you and a number of the people you follow, are proof that it is possible that just using mhbot (plus) can get someone symptom-free. Hope is alive…
I’m still balancing, I try to be carefull with toxins (or overwhelming) and at the same time I’m also not yet feeling enough confidence to rely completely on just mhbot. Some supplements support me to just get through the day. And I (and my doc) want to concurrently treat my co-infections, at least for now.
I’ve read your view about this, your immune system eventually could take care of things like that. Reading that gives me a calm feeling, that I have this stable foundation of mhbot supporting on so many different facets.
There are so much differences between how and to what extend people respond to treatment. I suppose these differences also exists with mhbot and maybe that can cause a need to individual adjustments and combinations. Sharing and reading different experiences all helps me to make choices in my journey to recovery, and to get inspiration and stay motivated. Thanks all!
Phoiph, or someone else, have you heard of people before, that feel changes (down and up) to every single treatment right from the beginning, or am I some kind of weirdo on that? Oxygen seems like a totally new thing to my body! I was thinking it might have something to do with my carbonmonoxide poisoning or my 92% of failing mitochondria slowly awakening...
Oh well if someone recognise something I say please do respond.
Wishing you all well! Joahsark, I hope you’ve killed a lot of it in your IV flare, hold on…
Survivorgirl1
Posts: 16 | From Europe | Registered: Jun 2014
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Haley
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Survivorgirl - I would reply to your question, but I don't completely understand it - maybe it's my encephalitis
You said "have you heard of people before, that feel changes (down and up) to every single treatment right from the beginning, or am I some kind of weirdo on that?"
Are you saying changes after every mHBOT treatment, such as herx like changes or healing changes, what type of changes?
I have only done 5 dives so I don't have much to report yet. Yesterday I had much more energy than usual, but today I'm in bed all day.
I am trying to decide if I should dive in the morning or the evening. What do most people do? I was going to do it early in the morning so I would be done for the day, but I find that I get hit with extreme fatigue, so I think I will do it in the evening before bed.
Next week I will experiment with adding exercise, just 5 minutes every other day. It doesn't sound like much, but it kicks my butt completely. I use a pilates DVD, I can choose a 5 minute workout or a 50 minute workout, it's difficult stuff. I will add an additional 5 minutes each week until I am up to 50 minutes or 1 hour. God willing!
Some changes that I notice already -
1. The color of my skin. My pasty whitish, yellowish appearance has become more tan or pink. This shows me that the blood is circulating.
2. Wounds healing quickly. I had an experience with a cut and a burn that healed very rapidly. This shows me the healing capacity on a cellular level at least in the skin.
3. Moments of lucidity in my mind. I have noticed this on a few occasions, usually when I have had a bit of a break from the oxygen and a good nights sleep. I'm still waiting for for my brain to switch on. Cognitive problems, fatigue and weakness are my worst symptoms.
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Phoiph
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Survivorgirl1...
You are right that I am concerned about adding more toxins into the mix, but also want to be totally clear that I am not advocating for people to go off of their medications unless they are under supervision of their doctor...
It is encouraging, however, to note that people have been able to get off of antimicrobials with the support of mHBOT...but it is a process that should be done with careful thought, planning and monitoring, of course...(just as you mentioned you plan to do)...
As far as early reactions to mHBOT...people differ in their reaction/sensitivity to oxygen, not only from each other, but from day to day.
Many times people experience an initial energy increase when starting mHBOT, and then a 2 step forward, 1 step back pattern. Other people (as in my case) feel very little changing for several weeks, then the pattern begins to emerge.
It will be interesting to hear what kinds of reactions you are noticing.
Haley...those are great observations...and, in my opinion, very positive signs. You have just started, though, so please be very careful not to overdo the exercise Just gentle movement is good enough right now to improve circulation and move lymph...you want to avoid having to "recover" from a workout at this point, as your body has a lot to do right now
Regarding the question as to the best time of day to do a session, that depends on your reaction. Some people find mHBOT stimulating, so shouldn't do it before bed. Others can do it before bed, and it doesn't affect their sleep.
Posts: 1984 | From Earth | Registered: Jul 2013
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posted
- Haley, sounds nice, your positive changes!
I recognize getting hit with extreme fatigue and also the improved circulation, I notice it in my upper legs.
My question was a bit unclear, but I think you got it. I mean any change, I feel both, sort of herxing and sort of healing. It’s a bit ‘shakening’ after every dive.
So your answer and update are very helpful to me! After a week or so my rollercoaster gets calmer, till I increase time and frequency a bit again…
Time of diving is just what feels most comfortable to you! I tried different times, ended up with diving in the morning.
- Phoiph, thanks, I'm happy with your reply, gives me reassurance and more understanding! Very encouraging…
I will work on an update in the upcoming week... Find me some brain to create descriptions… Posts: 16 | From Europe | Registered: Jun 2014
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Haley
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Phoiph - that is good advice about the exercise. I don't realize that the Oxygen is very powerful. My body needs to adjust to the oxygen and then I will do 5 minutes every other day, then incrementally work up to more.
I need to conserve my energy, I always forget that when I start to feel better.
I'm just so excited about mHBOT!
Posts: 2232 | From USA | Registered: Aug 2009
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posted
My update, hopefully contributing to more data on this treatment:
I’m at 30 dives now on 1.3 ATA with 9,5L/min. oxygen from the Intensity concentrator. I use a Summit to sea Shallow dive.
I’ve gone very slow because of my oversensitivity and herxing (or whatever) right away. I have been increasing time and frequency over the past 2-3 months up to 30 min. once every 2 days now, to eventually reach 1 hour daily. Before doing mhbot I did a month on just oxygen from the concentrator without using the chamber.
1. Straight after diving I feel tired and weakened or more flu-like for about 4 hours.
2. But about 6 hours after diving I feel (relatively) increased energy and strength from a deep level inside my body. Big smile!
3. The next day I’m feeling toxicated and tired again, along with a mild headache, brainfog or a feeling of totally neurocognitive crippled. Sometimes multivitamin helps a bit then.
4. I’ve had two massive flares at the beginning, possibly herx, and a few weeks ago I had another very big one.
5. My monthly women thing seems to have improved a bit, less cramps, less days.
6. I have had only just one migraine since the start. Normally I have lots, so that has improved.
7. My bowel-function has a little bit improved, my stomach has worsened.
8. I feel a bit more calm in my head and legs. And being in the chamber relaxes me.
9. My (probably co-infectional) drenching nightsweats had been less for a few short periods and now have worsened again... I'm adding C.S.A. Formula to the mix...
10. My knees seem more painful and swollen, and I have more pain in my neck and lowest back. Muscle and tissue are sometimes a bit less painful.
11. At the moment that I’m actually in the chamber my heartbeat is of the most strength and regularity I’ve ever felt in the past 7 years! (that's when my CO-poisoning was added to the mixture) Very promising.
12. Diet and my medication seem to work better since I’m on oxygen. Although, there are still only a few foods that I can eat without getting more nerve-pain, more heart- and breathing problems or more nausea.
13. It seems that I have more trouble handling tiring things around me lately. I.e. noises, light, and I’m having a hard time tolerating my at home caregivers around me, needing their help, but so overwhelming…
Well... overall I have some improvement. I feel cautious and confident... Views, ideas, insights, questions or guidance are always welcome.
Wishing you all patience, support, love and much progress along this harsh lyme-road!!
Also to the ones in this thread that haven't posted for a very long time and have 'open-endings'... I feel a little worried about you... Please feel invited (not obligated!) to write some personal words online (not necessarily in this thread) about your mhbot, if you feel like and have energy to do so...
Reading experiences all helps me to make choices in my journey to recovery. TNT, I'm going to pm you.
Byebye, Survivorgirl1
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TNT
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Survivorgirl1,
I got your PM, and will try to reply to it. If I don't reply right away, I am going through a flare right now, and trying to figure it out to get things stabilized.
I haven't read this thread in months, and I truly admire your courage and fight!
For the other divers:
I briefly scanned over page 7 and 8 of this thread the best I could right now (eyes feel like they are in a vice, and stiff neck), and some of people's symptoms stood out to me.
I cannot remember what symptoms went with whom, but some that were mentioned were "new-onset" symptoms while continuing mHBOT.
Things like lack of appetite, looser bowels even while eating good (and no ABX), lower back pain, panic attacks, GI issues, nausea, sweating upon minimal exertion....
These all could read like Brucella symptoms. Very easily! And the thing with brucella is it can produce "malaria-like" symptoms.
I am not trying to worry or discourage any one of you, that's for sure.
But I would at least look into Brucella and it's symptoms if you are experiencing a worsening while doing mHBOT. And discuss it with your LLMD.
I have some great links (please look at them all very thoroughly) on the brucellosis thread here:
It seems like I have more than 5 links somewhere, so I may bring that thread back up with some added links.
I wish you all continued courage and complete healing!!!
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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TNT
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Hi, everyone.
The subject of SOD came up with Haley on page 7 of this thread (7-27-14).
And Phoiph has explained that mHBOT interferes with detoxification because it creates more free radicals that the body counters with increased production of SOD. I think I have that right.
She wondered (in the non-mild HBOT thread) if my genetic make-up was contributing to my lack of success with mHBOT. I guess she thinks it is possible that I was producing free radicals faster than my body could deal with, especially considering I was also on ABX.
So, I thought that I at least owed it to everyone here to explore the possibility that my genetic mutations were interfering with my ability to detox properly, thus making my condition worse with mHBOT.
So, I dug out my genetic profiles to verify my mutations.
It appears that most of my snps for detox are fine. A few have 1 mutation (heterozygous). So, they should not be causing much trouble.
But I do have a double mutation (homozygous) on NOS (D298E).
***It appears that I have been tested by two different labs for SOD II (A16V). One lab lists me as no mutation ("neither chromosome carries the genetic variation"), or (-/-).
And the other lab lists me as double mutation (+/+). So, I am not sure which one I am. All other snps between the two labs agree.
The SOD II snp affects the mitochondria.
Here is the commentary from the lab that shows I am (-/-) on SOD II:
"Superoxide dismutase is the primary anti-oxidant enzyme within the mitochondria of cells (where most of our energy is made). SOD2 converts reactive oxygen species into less reactive hydrogen peroxide.
The wild-type genotype (-/-) is associated with higher SOD II activity and a greater sensitivity to antioxidant status compared to the other genotypes.
The combination of higher SOD II activity and low antioxidant intake and/or excessive oxidative stress (e.g., smoking) may result in an accumulation of hydrogen peroxide and increased risk of cancers of the breast or prostate.
This genotype has also been associated with a higher risk of motor neuron disease. Risk of cancer may be reduced in individuals taking anti-oxidants.
Because the (-/-) genotype is particularly sensitive to antioxidant status, liberal consumption of dietary antioxidants in colorful vegetables and fruits is recommended.
Broad-spectrum anti-oxidant supplements may also be helpful, including agents that help to raise glutathione levels (e.g., vitamin C, N-acetylcysteine, milk thistle) and support glutathione peroxidase (selenium)."
Also found this:
Superoxide dismutase (SOD) is an antioxidant enzyme that converts reactive oxygen species into less reactive hydrogen peroxide (H2O2), which is then neutralized by catalase and GSH-peroxidase. SOD2 is located within cellular mitochondria and uses manganese as a cofactor.
The only other detox snp that would be causing me any trouble would be the GSTM1 (1p13.3). I have an "absent allele" on this one.
From my test results:
"Glutathione S-transferases (GST) are responsible for detoxifying certain products of oxidative stress and a variety of electrophilic xenobiotics and carcinogens such as solvents, herbicides, pesticides, polycyclic aromatic hydrocarbons, steroids, and heavy metals.
GSTM1 is located primarily in the liver, whereas GSTP1 is located primarily in the brain and lungs.
When there is no gene present on the GSTM1 chromosome it is called an "absent" allele.
This results in reduced capacity for hepatic detoxification and increased risk of various cancers, chemical sensitivity, coronary artery disease in smokers, atopic asthma, and deficits in lung function.
Risk appears REDUCED for colorectal- and head & neck cancer, but ONLY when cruciferous vegetable intake is high."
It also says, "Decreased glutathione conjugation capacity may increase toxic burden and increase oxidative stress."
It does appear that detox is an issue for me, but exactly how it would affect my ability to use mHBOT, I'm not sure.
So, if a genetic/mHBOT expert would like to weigh in on this, go right ahead. I am sorry that the SOD snp is confusing.
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Phoiph
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"And Phoiph has explained that mHBOT interferes with detoxification because it creates more free radicals that the body counters with increased production of SOD. I think I have that right."
"She wondered (in the non-mild HBOT thread) if my genetic make-up was contributing to my lack of success with mHBOT. I guess she thinks it is possible that I was producing free radicals faster than my body could deal with, especially considering I was also on ABX."
Just to clarify...(especially since we're mixing two threads here)...I did not mean to imply that mHBOT interferes with the detoxification process, on the contrary, it actually initiates/enhances a detoxification response at the cellular level.
In addition, oxygen produces free radicals (ROS), which are a double edged sword; a certain amount are necessary to disarm pathogens, and too many will damage our own cells. To protect our cells from damage, the body produces antioxidants like SOD and GSH (in greater amounts when exposed to mHBOT) to compensate. (Conversely, taking too many antioxidants in supplemental/IV form can theoretically thwart the ability of the free radicals to fight pathogens.)
So, in TNT's scenario (see the non-mild HBOT thread), my question/concern was that her situation may be more complex if there were other factors, including a significant detoxification defect present, and wanted to explore this possibility since I thought it might have contributed in part to her negative response to mHBOT.
I wondered about a possible predisposed inability to detoxify or produce specific antioxidants, combined with other factors, including:
1) The daily ingestion of toxins (e.g., antibiotics, supplements etc.), plus
2) Methylation supplementation; the dosing requirements of which may have changed with the addition of mHBOT (methylation dosing is a complex and variable "art" to begin with, that can cause severe symptoms similar to the ones mentioned when not dosed properly), and
3) That additional oxygen via mHBOT may have initiated a greater detox response (normally a good thing), which, in combination with the "perfect storm" above, may have released toxins into the body at a greater rate than they could be removed, causing build up and worsening of symptoms.
This is a just a possible consideration on my part, because I personally believe that symptom flares/worsening can't always be attributed to the growth or spread of pathogens themselves; and that there may be more to the picture if we look deeper.
I would like to be optimistic that more formal research on long term mHBOT is forthcoming, but the truth is that since oxygen is not patentable, there is not much impetus to throw money in this direction...which is why everyone's experience/contribution is so valuable and important to consider carefully...
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Haley
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Thanks for that explanation Phoiph. It's going to take a while before I comprehend the free radical / antioxidant balance, but I think I am starting to get it.
I would like to ask if anyone has this side effect of mHBOT... I can't catch a breath and feel like I can't breath in enough air, also have rapid heart beat. Not saying this is bad or good, just wondering if this is a side effect.
It reminds me of when I had internal bleeding (I lost about 1/3 of my blood), so of course my hemoglobin was very low, my heart was pounding trying to circulate the small bit of oxygen that was in my system.
I wondered if low hemoglobin and mHBOT may have this effect. I do have slightly low hemoglobin.
Anyway the point of this post is, I'm wondering if I should take a day off. Maybe I have too much oxygen in my system. I have done 10 days, will be day 11 today.
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I'm thinking probably not but do you know of any research related to successful treated of C-Diff while treating Lyme and Bart? Just came down with my fist bout, now more than ever determined to get a machine in the house since options are getting even more limited.
Thanks!!
Penny
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posted
Prescription dificet
Posts: 366 | From Kalamazoo, Michigan | Registered: Jun 2008
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Phoiph
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joahsark...
From K.K. Jain: Textbook of Hyperbaric Medicine
Pseudomembranous Colitis
Pseudomembranous colitis (induced by antimicrobial agents) is caused by a toxin-producing organism Clostridium difficile. The presence of the organisms and toxins upon assay is suggestive of the diagnosis that can be confirmed by proctoscopy and colonoscopy. Most of the cases of this disease are self-limiting. Vancomycin has produced symptomatic improvement in some cases. HBO therapy has been shown to be useful in the management of this disease, but further research is required.
Unfortunately, this reference doesn't indicate at what pressures HBO was found to be useful in managing the disease.
I would suspect, however, even if higher pressures were necessary to actually kill the pathogens, mHBOT would still be beneficial due to its immune enhancing effects.
I also know of someone who recovered from a particularly difficult case of c.diff with ozone treatments. I can connect you if you like...
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Phoiph
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In reference to Haley's post above...
The symptoms she described reportedly improved after drinking more water. She had been drinking less than usual, and may have become a little dehydrated.
It reminded me to emphasize the importance of being conscious of water intake and staying hydrated when doing mHBOT...
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CD57
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up
Posts: 3528 | From US | Registered: Apr 2007
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Hey Guys & Gals! Well, I'm still trying to figure out a way to peel the last layer of this Onion. The last layer of this onion is predominatly Pain. Sometimes the pain aches, and other times it burns like crazy.
I'm eating really clean, and have even cut way back on caffeine. I continue to drink a gallon of water each and every day? It is extremely bothersome at times, however I guess I should be greatful with the progress I have made to date:-)
Its extremely weird....ever since my bout of both the Shingles, and Bacterial Pneomonia my pain worsened. I'm aware of post Shingles pain etc....its just really frusterating.
I will continue to keep you guys, and gals updated
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Haley
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Thanks for posting looking4hope. I hope the pain gets better.
Would you say that your brain stuff is still gone?
I've only done this about 20 dives, some symptoms are better. My brain is still a pile of mush.
I may need to take some medicine if I want to keep my job. Trying to trust that the brain will clear, just seems to be getting worse. ugh
Posts: 2232 | From USA | Registered: Aug 2009
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Hello, i too decided to take " the plunge" so to speak. However its still fairly early to assess at this point if its helping. There are some things that have improved for sure but some of these pesky symptoms continue to return at time. Maybe it herxing..i think that it is.
I've been taking it very slow as well b/c i am also very sensitive to everything. Maybe its a methylation block. Anyway i have just completed dive #50. I am currently diving 3 times a week at 1.3 ata for 45 minutes with o2 at 10 litres the whole time. I am slowly increasing the length of dive and when i get up to one hour i will increase days.
Some of my symptoms that have improved are headaches, head pressure and fog, however for some reason these have been acting up again recently for some reason which discourage me. These have been one of my hardest symptoms to get rid of and i thought i had them licked
Fatigue has improved but sometimes my insomnia will flare up from. diving which can cause fatigue. Dizziness is gone. Tingling hands and feet have improved but still flares up at times. Pain has improved but still get worse at times..when i started diving i was having nerve pain off and on and joint pain which i have not had in a long time.
Stiffness in neck and back is still a lingering and annoying symptom for me that just doesnt go away. Im going to continue diving and hopefully get up to daily hourly dives someday soon...i just cannot rush it unfortunatly.
I also am curious about the detox effects of mhbot and taking of detox supplements as well...trying to make sense with my lymie brain. What about supplements to improve methylation? Is that too much detoxing combined? Does it interfere with the effects of mhbot? And what about other detox supps like glutathione, nac, alamax etc? Thanks Deane
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Phoiph
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Hi BBinme...
You're having some very positive changes, and that is great, but in my experience, 50 dives (at 3x per week) is very early in the process, and way too soon to evaluate symptoms that are still present.
It is a 2 step forward, 1 step back process, with symptoms waxing and waning before they finally disappear over time, in my experience.
The questions you asked about methylation supplementation are good ones and not easy to answer, as there are so many variables from person to person with methylation and detox issues, and no specific studies that I know of involving methylation and mHBOT.
That said, we do know that mHBOT makes the detoxification/methylation process more efficient, so my thoughts are that you have to be careful with adding on a lot of other concurrent detox protocols, as to not overwhelm the system.
Also remember that free radical activity (which naturally occurs in the body, but is increased by mHBOT), while potentially damaging to our cells in quantity, is also an important part of the process of fighting/disabling microbes, so you don't want to try to eliminate it altogether with antioxidants.
Fortunately, it has been found in studies of children with Autism that natural antioxidants also increased in response to mHBOT, so oxidative stress was not of concern.
There is also the impact of supplements on the gut to consider, as well as "muddying the waters" with multiple treatment variables.
I personally couldn't take any supplements at the time I started mHBOT (due to severe sensitivities, reactions, and gut issues), and became well without them.
People may react differently; unfortunately there is no clear cut answer that I know of...so, in my opinion, "balance and moderation" would be the thing to keep in mind.
By the way, regarding the LPM setting you're using on your concentrator...I believe you're using a Sequal concentrator, is that right? If so, be sure to set it at 10LPM before you pressurize the chamber, and not touch the setting again after pressurizing (the LPM will drop a little due to the backpressure of the chamber during use...this is normal). If you try to crank it up again to 10 after pressurizing, it will not function efficiently. (There is a different procedure for the AirSep concentrator...that one must be set below 10LPM...at around 8.5LPM, then left at that setting at all times when used with the chamber).
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Hi Phioph, I guess i was more curious about taking the vitamins( methylfolate, methylcobalimin and b6) used to help with methylation. Ive never been tested for methylation problems but i would not be surprised if it was positive b/c im so sensitive to everything. I think i understand the detox supplement issue with mhbot. I have stopped glutathione awhile ago. Im still taking nac and alamax but have cut back. I plan to stop both soon when i run out.
Yes im using a sequal concentrator. I turn that on to 10 before starting the pressurizing and then dont touch it again until i get out of chamber and i always shut the pressure off before the concentrator. Thanks
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Phoiph
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Coincidentally, the methylation subject came up today with a naturopath who's opinion I really trust.
In her experience, before considering methylation supplementation, you have to be careful to have all hormones/endocrine levels in balance first, otherwise it can easily offset that balance and potentially cause lots of issues and reactions.
It is a complex process that, although many people take it on themselves, should probably be initiated and monitored by someone that understands it thoroughly and can look at the whole picture...as I have known people who have been really helped by it, and others who have had very negative reactions and setbacks.
Good about the concentrator...just checking...:)
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Haley
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Hi Phoiph,
I am doing 1 hour everyday, almost at 30 dives. I am considering doing 45 minutes 2 times a day. Do you think that is too much? I notice my symptoms come back before 24 hours. I just wonder if it might be more effective, although I'm not sure how I will work it into my schedule.
I also thought about this after seeing this 48 second microscope clip from the microscope thread. This is a 13 hour time lapse, you can see how long the bug will stay in cyst form.
Phoiph
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Hi Haley...
I think it is important to do the full 1 hour session (at full pressure, not counting inflating/deflating time) daily to get the most therapeutic benefit.
People differ in their tolerances to oxygen "dosing", and each individual can differ day to day. Since people with chronic illness tend to be very toxic and sensitive, it is best to be conservative, in my opinion. Oxygen is considered a "drug", after all.
The effects of a 1 hour session stay in the body for over 24 hours, and are cumulative, from what I understand (but it takes a certain number of sessions before the results stick). My personal opinion/experience is that more than 1 session a day (or sessions longer than 1 hour) are more than what is necessary for our purposes, and may be too much for sensitive people.
I know for me, the few times I have accidentally fallen asleep in the chamber for more than 1 hour, I felt as if I had overdone it. Same thing when I had tried to do more than 1 session per day early on in my treatment.
There are many other indications that require higher pressures or more time in the chamber (such as wound or bone infections, for example), and I have known people who have these conditions in combination with chronic Lyme who, unfortunately couldn't tolerate these protocols.
I can see why you thought about this after watching the clip...but consider that much of the force behind mHBOT is not just through direct antimicrobial action, but via healing/empowering the innate immune system overall so it can deal with the "bugs" more effectively...
Posts: 1984 | From Earth | Registered: Jul 2013
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Thank Phioph. I am taking Metanx which does have the same things that people take for methylation blockage...not sure if metanx helps or not with methylation( i would think it doez), but my llmd put me on it for nerve issues, numbness and tingling etc. Ive been on it for awhile now with no reactions so i think i will stsy on it for now. Posts: 79 | From Maine | Registered: Sep 2011
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Haley
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Thank you for the reply Phoiph. I will stick at one hour a day. I usually have the concentrator on 10. I have not missed a day, tomorrow will be 30 days for me.
I posted that one link as I think it is interesting that the effects of the oxygen "wear off" around 14 hours. I do, however, feel a cumulative effect. My main symptoms are weakness, fatigue and severe brain problems.
I have definitely improved my overall strength, for example I am doing Pilates 3 times a week, but only 10 minute each time. In the past I would be completey exhausted for a week if I did one short work out, in fact getting out of bed was a challenge for me. I now feel stronger with each workout and actually look forward to these workouts. It's a big deal.
My brain is still a mess, but I have faith that this will get better as time goes on and if I need to take medicine for it I will.
I feel that the oxygen is knocking out anaerobic bacteria while simultaneously empowering the immune system.
I believe the reason Lyme is so complicated is that we all have different pathogens due to the fact that we are bitten by a different tick in a different geographic area. Also, one person may have 2 pathogens and another 100. MCIDS (as Dr. H puts it). Its as if each one of us has an entirely different illness. Drs can't test for everything under the sun and they are often guessing when hitting these things with medicine.
That's why Oxygen makes sense to me. It boils down to 2 different types of bugs - anaerobic and aerobic; the Oxygen will take down a lot of stuff. This is easier to grasp than trying to treat 50 different pathogens.
Carry on mHBOTers.
[ 10-07-2014, 10:59 PM: Message edited by: Haley ]
Posts: 2232 | From USA | Registered: Aug 2009
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Haley, So sorry for the late reply.....I have been through a great deal lately "Not Really LD Related"
I agree with everything Phoiph states above....I do believe in my heart eventually in TIME 'The Lights In Your Brain Will Come Back Online"(-:
Have you been following your diet, and a host of all the "Little Things".... with an emphasis placed strongly on the "Little Things"?
I like Phoiph believe that one should keep this "Process", as KISS or Keep It Simple Stupid as possible(-:
The only adjuncts I really ever added to Mhbot, were Earthing, Diet, Increasing Voltage in the body, and Exercise....and that has always pretty much been it.
Haley, the fact that your now able to exercise more frequently is a HUGE indication in my humble opinion that you are indeed headed in the right direction.
You have always intuitively felt like some form of Oxygen was going to get you to where you needed to be.....and the fact that your NOW training the way you are is nothing short of AMAZING at this stage of the game "Congratulations".
Mhbot, is a very slow process at times Haley. With that being said we are all as human beings living in one of the fastest paced civilizations in recorded history! That fact alone makes things that much more difficult!
I know it's hard as someone who has battled and is still battling right along side you Haley in the trenches each and every day.
In closing no one hear I believe is a doctor so we obviously can't give medical advice. What we can do is simply share "Our Personal Experiences", with this modality.
I'm greatly encouraged to hear about your success in regard to your exercise. Like you I have read a great deal about Mhbot, and other literature which interested me on the topic of TBD or Tick Born Diseases.
After "Adding Everything Up", I have my "Personal Opinions", as to why some heal, some don't, and other heal very slowly.
With that being said, I do believe Phoiph, who has unselfishly donated an abundance of her time and energy to helping others has illustrated "Personally", how powerful Mhbot can be for some.
I have always loved Phoiphs "Simple", straight forward approach as it coincides with much of the research I have done personally in regard to Mhbot.
Again sorry for the late reply Haley...I hope all is well(-:
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CD57
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I thought I would chime in here with a conversation I had recently with someone amazing that Phoiph hooked me up with. This gentleman has a lot of personal experience diving and is a researcher as well. Not Lyme, but other health challenges.
When we talked the other day, he mentioned to me that as regards aerobic pathogens potentially "growing" or spreading (this came in in course of discussing tick borne infections) he said that even aerobic pathogens create an acidic, low oxygen environment in which to grow. It was sort of a light bulb moment for me (that takes a LOT, right Phoiph?) and I am not really afraid of that anymore. I was afraid of "growing" bart.
If people have bad reactions to the chamber (I did, jumped in too much too soon) it's probably not because aerobic pathogens are "growing". The chamber is a methylator and a detoxer, so I would think that it's more likely that something is going on in that regard.
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