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» LymeNet Flash » Questions and Discussion » Medical Questions » looking for opinions/experiences of NON-mild HBOT

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Author Topic: looking for opinions/experiences of NON-mild HBOT
MichaelTampa
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I ran into a neurologist who says he's treating lyme (and other conditoins) with HBOT, but not the mild version of HBOT.

Anyone tried this? How did it go? Anyone think this has any chance of working in something like 20 treatments? (Maybe we would've all done this by now if it was that good?)

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Robin123
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Pming you -
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JCarlhelp
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Helpful but not a cure. MBOT may be just as good. Would not recommend doing this if you have untreated or symptomatic babesia as it can make it worse.
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Phoiph
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Unfortunately, I don't know of anyone who has had significant lasting success from Lyme with 20 high pressure treatments.

Neurological conditions are treated at mild pressures because it was discovered that although people who were treated with higher pressure HBOT for wounds experienced successful wound healing, they also showed regression in their concomitant neurological conditions.

It was determined that the injured brain is very sensitive to oxygen toxicity. So, in my opinion, although Lyme is a bacterial infection, the fact that it is also a neurological condition must be taken into consideration first.

Here's a great article on that subject:

"More is Better: The Recurrent Illusion of Higher Pressure HBOT in Chronic Brain Injury, by Dr. Paul Harch": http://www.netnet.net/mums/Harch2.htm

Many doctors and HBOT clinicians base their treatment protocols for Borrelia on a study in 1993 by Austin, which demonstrated that the lethal level of oxygen for a spirochete was somewhere between 30mm Hg and 160mm Hg.

They estimated that HBOT at 2.36ATA while breathing 100% O2 would raise the tissue 02 tissue levels to between 200mm Hg and 300mm...well above the range necessary to kill Borrelia.

This information was later used in a study with human subjects by Fife in 1998.

Unfortunately, the study didn't include research on what the lowest effective range was, and so this level continued to be used over time for treating Lyme disease, in spite of subsequent treatment failures and drop-out rates.

Another consideration is that Lyme disease is different than the infections that many clinicians are used to treating, considering its reproductive rate and ability to morph into protective forms, requiring, in my opinion, long term treatment to avoid relapse, which is cost prohibitive in a clinical setting for many people.

One of the biggest benefits that people who do short term treatment miss out on, in my opinion, is the healing process that is offered by long term mHBOT treatments. This is not just about "killing the bugs", but about restoring immune function and bringing balance to the body by supplying it with what it requires to repair and restore itself to full health.

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MichaelTampa
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quote:
Originally posted by JCarlhelp:
Helpful but not a cure. MBOT may be just as good. Would not recommend doing this if you have untreated or symptomatic babesia as it can make it worse.

I think I've heard a similar concern on here regarding use of ozone in the blood?

I never walked away from those discussions feeling like the issue was very clear. It seems you can read these things should kill babesia, so it is just difficult to know what to think.

Have you had any clear experiences of babesia being made worse (but not herx) from ozone or oxygen? Or heard of that happening to someone?

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TNT
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I don't want to detract from the discussion, but I personally feel (after 4.5 months of continuous 1 hour daily dives with O2) that there are some infections that mHBOT can make worse (or feed).

Exactly which ones, I am not certain (but I have my ideas).

My opinion is that mHBOT is great for killing borrelia. And it is wonderful for rebuilding the damage that TBD have done to the body and brain. It is great for getting oxygen to deprived places in the body.

But in my case it seemed that other aerobic organisms (besides me) liked the oxygen even more.

I now know of at least 4 LLMDs that utilize some form of HBOT, so it definitely can be extrememly beneficial when used properly.

And for those persons that it has helped as a stand-alone therapy, I want to say that I am extremely happy for their miracle. But for those doing it, or considering it, don't expect it to be the magic bullet.

**I am absolutely NOT discrediting what Phoiph has experienced. And,

My hats off to her for how HARD she is toiling night and day to make this therapy a possibility for anyone wanting to try. Her commitment to those who are sick is truly selfless.

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Phoiph
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Thanks, TNT...I totally appreciate your input and would like to hear more about your ideas on what you felt became worse while doing mHBOT.

It would also be very helpful to know what other meds and treatments you were doing at the same time.

This information is so valuable, as this is an ongoing quest to find patterns regarding what has worked best for people and why.

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TNT
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Since I really don't know what was happening.... how to put this into words?? It really is very hard to describe.

I was just... going downhill at an accelerated rate. All my symptoms, particularly PAIN (bone, nerve, and muscle), joint destruction, cognitive dysfunction, disconnected feeling, circulation (I know, that's weird), muscle wasting, dizziness, trouble sleeping, nerve pain, nerviness (could NOT relax), hopelessness, fatigue, stiff neck, PD-like stuff, MS-like stuff, etc, were getting WORSE!

About the only symptom I don't have normally (and didn't get worse) is headache (except I have the weird head-fullness feeling, and pain and stiffness in the back of head and neck. But is not as noticeable anymore).

When I first started diving I particularly noticed that within minutes of each dive my joints would be much more clicky and poppy (when I turned the pages of my book I noticed it in wrists and knuckles). My knees would be extra poppy too.

And near the end of dives (when I first started diving especially), I would sometimes get a distinct panic attack. I would get very emotional, feel VERY hopeless, and would end up crying many times.

The whole time I dived I was taking very low dose ABX. Not the same ones, but Bactrim and Amox. for a while, then Cipro, a short stint with Doxy added, and maybe one more that I cannot remember without checking.

DOWNHILL the whole time... and complete HELL. I was not me, didn't feel like me, and didn't know who I was anymore(not literally). I was basically existing but not alive. And SO much PAIN!! So I stopped mHBOT. The next week I had a Dr. appointment and she suggested starting Rifampin since we hadn't tried that one.

Within days (literally), I was sleeping better, eating better, mood was improved, and within a couple weeks had gained a couple pounds of weight back on. I have since added low dose Doxy and low dose Biaxin.

To date, most symptoms have definitely improved. I'm still in bad shape, but I feel alive, not hopeless (most of the time), am sleeping relatively well most nights, have gained a total of 10 lbs of weight back on, can run some errands and go to limited number social functions like parts of church services, and some family birthday parties.

I am still debilitated, but making some progress. I feel that the mHBOT was not helpful for me at this point, but may be in the future to help repair the damage (once the aerobic bugs are dealt with).

This is only my experience, but is true to the best of my ability to express it.

I don't understand why it worked for me like it did at this point, except for the speculations that I have mentioned.

Much success and blessings on each one that is doing mHBOT. Your experience may be different.

MichaelTampa, I'm sorry to have hijacked your thread. It may have been better to post my experience on the mild hyperbaric thread, but since you asked if anyone has gotten worse with mHBOT, I thought I would share some input. And since Phoiph asked, I felt it necessary to go into more detail.

There may be some minor details I missed, but that is the main gist.

Ok, my brain is fried. Hope this helps. Feel free to ask any other questions.

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MichaelTampa
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TNT, as I was interested in the "feeding other infections" topic, I don't consider it hijacking, and am happy to read your experiences (learning of it anyway, sorry how it went for you, of course).

To be clear, then, TNT, when you added rifampin and headed in a better direction, you stayed OFF the mHBOT? So what infection(s) do you suspect the mHBOT was feeding in your case?

I am really considering either mHBOT or regular/full HBOT, but understand there is already a bit of a thread on the mHBOT.

Phioph, thanks for the link, I read the MUMS article. Do you know what the "CP" stands for, which is used in many places in the article? Is mHBOT 1.5 ATA and regular HBOT 2.36 ATA? Or something else, or is it less standardized?

TNT, do you know of those LLMD's using HBOT, how many are using regular and how many are using mHBOT? Are any using some of both (mHBOT some situations and regular for other situations)?

Anyone -- part of me would like to try this out at a place, rather than buying a mHBOT. I know my neurologist uses regular and discounts the mHBOT. Are there any places one can go for treatment for mHBOT, is it just hunting around?

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TNT
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Yes, MichaelTampa, I have not used the chamber since stopping it.

As for which bugs I suspect it feeds.... In my case we really suspect brucella, bart, or even protozoa. Bart. and brucella are both aerobic bacteria.

I have had heavily-ridden blood smears in the past for bart-like organisms from F labs. The most recent one (almost two years ago) showed a low load, but it is a stealth pathogen, and prone to worsening.

As for protozoa, I have an extremely high load of a clade of protozoa by PCR. But the full meaning of the test is not known it seems.

The only other treatment that I have been doing since starting the rifampin has been some rife therapy on and off.

I consider it only supplemental as I have done rife on and off since I was diagnosed and feel like it helps, but I slide with doing only Rife.

I know rife kills bugs, but for some reason it has not been enough for me. I do feel it working-and I have herxed pretty strongly on it already-but mostly it is helpful for my pain.

As for the docs using HBOT, I am basically only aware that they are using it, not how or when they use it. I can PM you about who they are if you would like, but you may already know about them.

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Abxnomore
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I wouldn't waste your money on traditional HBOT. It might give you a boast, but it rarely lasts. I did about twenty of them myself and it was money I could have put to better use.
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Phoiph
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MichaelTampa...

In answer to your questions...

1. "CP" stands for "Cerebral Palsy" in the article

2. Anything 1.5 ATA and below is considered "mild" hyperbaric (mHBOT), and anything above 1.5 ATA is considered HBOT.

TNT...I can totally empathize with the symptoms you describe...because I also had the same type of intense symptoms non-stop for 8 years (pre mHBOT). It is a living hell, and I'm so glad you have found some relief.

And we both have/had Bartonella and protozoa (I don't know if I had Brucella; I wasn't ever tested for it). I also had Babesia.

So, why the differences in our response to mHBOT?

I'm curious...have you been tested for any genetic detoxification defects? (Maybe that's why you're on "low dose" antibiotics to begin with?)

One of the questions that comes to mind is, since mHBOT increases cellular metabolism and initiates a detoxification response, was mHBOT really "feeding" the coinfections and making them worse as you suspect...or was there some kind of oxygen toxicity reaction happening in combination with the particular meds you were on and your ability to process them?

In other words, is it possible that toxins were being ingested and also released by mHBOT faster than your body could process, and were backing up, causing toxicity and worsening symptoms?

What are your thoughts?

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TNT
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I honestly don't want my experience to influence those on the mHBOT thread to stop or be discouraged. Mine is one case. Each person is so different.

That is the reason I didn't post my experience on that thread... I was afraid it might discourage others, or give Phoiph a bad name.

We need more people like Phoiph and Gael to (excuse me for lack of a better word) "harp" about treatments...not fewer people in the trenches. So I don't want to discourage ANYONE...not those being helped, nor those trying to help.

I do think that more patients will have to be followed (in a study setting) to document when, how and why mHBOT helps or doesn't help. And I think the docs currently doing it will have adequate info eventually, if not now, perhaps in time.

It will be a learning experience for each one of us and the doctors.

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TNT
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Phoiph, I will try to answer your question tomorrow. I didn't see your post until after I posted mine.
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Phoiph
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TNT...

Thanks for your concern about influencing people against mHBOT...but I do think people should hear both sides...so your information is a very valuable contribution to our limited "research"!!!

As with most things Lyme-related, we are figuring this all out ourselves, and the more information, the better the discussion and the more knowledge we gain...

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TNT
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Phoiph,

In response to some of your questions. The reasons I am on low dose ABX are because of GI upset and possible porphyria.

I do have some detox abnormalities and am homozygous for 2 of them: NOS and SOD II. But I don't think that detox issues were major contributing factors in regards to the mHBOT not working.

I commented in another thread on MTHFR recently that a natural health practitioner had undoubtedly told me my main issue was detox and that is why I wasn't getting better. I did her program for a number of months.

After months of natural modalities targeting detox and methylation(including glutathione supplementation, methylfolate, and even months of the correct forms of B-12 injections on an almost daily basis) with daily sauna for a while, I was still losing ground.

Next, as I said, I did some low dose ABX until I got a chamber from a friend. So, I did mHBOT with O2 daily for an hour for 4.5 months with no interruptions while on a few different low dose ABX that we switched up a few times. Still losing ground.

The whole time, I was still addressing the heterozygous MTHFR (and CBS) mutations with the B-12 injections, methylfolate, and the other stuff I mentioned above.

AND I WAS STILL VERY TOXIC.

It wasn't until I stopped the mHBOT and started to address the mystery infections with the Rifampin and the ABX I am currently on (and I don't feel that we have totally figured out the correct combo), that the slide (as a whole) started to turn around some and go the other direction.

I guess if it was detox that was causing the issues, then treatment with rifampin (which is hard on the liver) should have made things even worse.

I would have become more toxic. But as time went on the past several months, I have become less and less chemically sensitive. On my better days, I don't mind the smell of gas or diesel smoke. And perfumes actually smell good again sometimes (it's rare).

I remember reading while studying about brucella that it causes a massive endotoxin buildup in the blood.

And then I realized that brucella is a gram negative aerobic bacteria.

I also came across a post in an old thread on brucella warning about the use of HBOT with this infection. And just yesterday (while double-checking some info I posted yesterday) I came across a piece of info from a doc that would possibly elude to this being true.


So, if BLO causes a massive buildup of toxins in the blood, that would explain why my issues have seemed so much like detox since my "relapse." (But it has been so much more than just detox issues.)

And, if HBOT would in fact feed brucella or bart, then that would explain my worsening condition during that time, and the resulting toxicity issues.

And these things would explain why even with the use of a toxic drug, my physical condition and chemical sensitivity has actually improved.

_______________

My brain is not functioning as well today, and that is why I have not gotten this written sooner. And, this may not be as coherent as it could perhaps be for that reason too.

I did have to retrieve some of my test results before commenting, too.

But these are my thoughts on the matter, and the explanations that make the most sense to me.

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S13
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My case is very similar to TNT's. Ive also done a lot of mhbot, 200hours+. The first months with antibiotics, and then more than 3 months without antibiotics.

I can tell you it was a mistake to stop abx. I have to give credit to mhbot for keeping the pain at a low level when i was off the abx (the previous time i was off abx i got horrible pain in my knees). But bacteremia on blood smears was increasing rapidly and eventually i was developing new neurological symptoms. I was steadily backsliding.

Recently ive started abx again, and im finally making progress again. Just like TNT i use Rifampin which helps my neurological symptoms. Mhbot has never helped my neuro symptoms. Im still puzzling a bit with the babesia treatment, but bactrim and alinia have decreased my jaundice, sweating and SOB. Im now focusing more on herbs for babs because rifampin does not go well with alinia and bactrim.

Anyway, toxicity of the body is probably the primary reason why people feel ill from these tick born infections. And (m)hbot will very likely assist in clearing these toxins faster from the body. But if you dont get to the source (=the infections) then you will get an overload of toxins no matter what. I think this is more true for co-infections anyway. Borrelia is at least inhibited by the oxygen, the co-infections are not.

I think people who have only borrelia, or borrelia as their primary infection with only light co-infection involvement, can benefit hugely from hbot. But if babesia, bartonella or perhaps brucella is your primary infection then hbot will not do much.

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Phoiph
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TNT...

Thank you, I really appreciate this detailed synopsis...and the time and effort it took to put it together.

I think there is very valuable information there, and, as you said in your previous post, in time, with more people reporting, the picture will become clearer...

S13...are you still doing mHBOT regularly?

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CD57
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Michael, I have to second Phoiph's thoughts about HBOT. I did 40 dives at 2.4 and it was great while it lasted but when I stopped, so did the benefits.
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Haley
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I appreciate all feedback from any mHBOT users, negative or positive.

I am just starting my journey and hope that there will be success. Time will tell.

The bottom line is that we need more research. We need a large sample of Lyme patients to try this therapy. If this therapy works for me, I would like to find a way to do that.

I will have a SPECT scan before and after 90 days, which I can post here if that is possible, other than that it will all be based on how I feel.

The problem with regular HBOT is that it is cost prohibitive, maybe it would work after a year of dives, but no one can afford that.

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S13
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quote:
Originally posted by Phoiph:
S13...are you still doing mHBOT regularly?

Recently ive decided to give it a break. Since it was not providing any benefit, im thinking it would be better to use the time and effort it takes each day for other things.
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TNT
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Originally posted by S13:

"Recently ive decided to give it a break. Since it was not providing any benefit, im thinking it would be better to use the time and effort it takes each day for other things."
__________

I'm not trying to be ignorant, but would it be fair to say that although it was not providing overall improvement, it was at least helping you with your pain while you were off ABX ???

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Phoiph
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S13

It would also be great information to know what kinds of bacteremia you were seeing increase rapidly on your blood smears...(I think you mentioned you prepare your own blood smears and analyze them?)

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