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» LymeNet Flash » Questions and Discussion » Medical Questions » Mild Hyperbaric Treatment (Page 21)

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Author Topic: Mild Hyperbaric Treatment
S13
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Yes it has the small yellow light.
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Phoiph
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OK...good...it has the 02 monitor/alarm feature...which will sound if the electricity goes out or the 02 purity falls below 80%.

Some AirSep units don't have this feature (they are less expensive) but I don't recommend them for obvious reasons.

Also, even though the purity alarm on your AirSep hasn't sounded (while the unit is set at 10LPM when being used with a chamber), it doesn't guarantee that the unit is not overworking to maintain that purity level (and/or is forced into a demand/pulse mode)...and again, over time, this will shorten the life of the unit.

Other models/manufacturers work differently. The SeQual 10LPM, for example, should be set at 10LPM when used with a chamber. Once the chamber is inflated, the LPM reading will drop to 8...and should be left at that setting throughout the dive. It will rise back to 10 once the chamber is deflated. If someone resets the dial to 10 while the chamber is inflated, however, this will overwork the unit.

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Koco800
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Phoiph,
Thanks for the advice. I do have that concentrator. So far I have been setting it at 7. I will most likely move it to 8 tomorrow, but will make sure to stay below 8.5

--------------------
.

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Koco800
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Hey,

I may not remember to update this all the way through treatment, but so far I'm 11 dives in.

I haven't noticed anything huge, except maybe some
weird intestinal changes. I had diarrhea the first two days
after starting hyperbaric...not sure what would have caused
that. No huge symptom relief yet (it's early)...my main lingering issues are neuropathy, anxiety, intermittent insomnia, fatigue....and a lot of other stuff that never resolved with antibiotic treatment

--------------------
.

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Monti
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Hi Koko800...

When I first started the treatment made me very gassy for the first few days and then that went away. It's not the exact same issue as you but in the family.

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Phoiph
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Koco800...

You may have had a chance to read the entire thread yet, but for most of us, the lasting changes happen over an extended period of time.

In my case, it was a few months of daily dives before I noticed the first "shift" (not necessarily an improvement, but a change). It was a 2 step forward, 1 step back process, that eventually led to recovery. Diet and gradual exercise was also crucial.

It helps to keep a log with short daily entries, so you can look back over time and see the changes. It is easy to forget where you came from when you're feeling better, and the changes are gradual.

I also recommend doing periodic videos every three months or so...

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foxy loxy
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I am JOYFUL to report that I am currently in an "up" phase!! I feel like it won't last, BUT! I will say I have NEVER had such an UP as THIS UP!!! I am SOOO excited but trying not to be because I think I will probably crash again!! but I have times when my head just feels GOOD! not better but GOOD!!

I am two months in. It made me sicker at first so I backed way down and started much more gradually. I still am only at an hour and lay the mask under my chin. I am hoping to gradually start breathing in the oxygen a little at a time.

I am feeling so good the last few days I hate to break the waters!!! OH what bliss to have a normal head!! even only for short times!!!

OH, I hope this is working... praying...praying...

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Phoiph
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foxy loxy...

Has it really been 2 months already? I'm very glad the gradual approach is working :)

Pleeeeeze continue to go slowly...and try to resist the temptation to over do it (I know how difficult that is when you have a "window").

There will definitely be ups and downs...that is a given...but now you know that you are capable of feeling better, which is a big help, both mentally and physically.

Are you logging?

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susank
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Phoiph - your PM box is full.

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

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Phoiph
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Apologies, SusanK...should be OK now.
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toyswalk
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18 'dives' and LOVING IT!!! I'm working into it slowly, I'm just at 47 minutes without supplemental oxygen. I started noticing subtle signs of improvement after just the first few dives. Very, very excited and encouraged!

If you do Facebook please join the closed (private) mHBOT group I've started. Newbies, pros and might wannabes all welcome. Just type mHBOT in the Facebook search and it should pop right up. No desire to replace this superior and informative resource here! Just thought it'd be fun to have a casual place to post while we are doing our dives. Today I posted a pic of the clip on hanger my husband made for my Wilkie talkie. A couple of us have posted pics of our views from inside our chambers :-). mHBOT mild hyperbaric oxygen therapy is full name of the page, join us!

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foxy loxy
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Yes Phoiph, 51 dives in. Of course some of those were terribly short and I am currently not using the mask yet!

I can hardly believe how powerful this is even without the mask!!

My Dr. gave me a different mask with a bag that gives more concentrated oxygen. I think I will get used to mine first before trying it.

Don't worry Phoiph, I think I have learned my lesson about too fast! Now I don't want to change anything! [Smile] Thanks for the encouragement!! Means a lot...

I am so EXCITED!!! Toyswalk,I don't have facebook, so be sure to continue to log on here! I want to know how you do!

P.S. Oh and YES I am logging...

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toyswalk
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Foxy, I AM SO EXCITED FOR YOU!

Look forward to sharing more improvement updates with you. I check in here a couple times of day to see what's up.

May the force be with you!

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Phoiph
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foxyloxy...

Is that a "non-rebrether" mask? If so, it requires flow rates of 10-15 liters per minute to keep the bag inflated, which is more than the output of the oxygen concentrator you are using...

If you use it with lower LPM (8.5 LPM is the highest setting at which you should set your AirSep when used with a chamber), you run the risk of the bag on the mask collapsing, and breathing in your own carbon dioxide.

I would definitely bring this up with your doctor (if it is indeed a non-rebrether mask)...

A standard "Hudson" (aka "simple" mask) that covers both your nose and mouth is adequate, and safer for this application...

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Haley
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Why do people use a rebreather mask as opposed to a non-rebreather mask? Just curious. Mine has the bag on it.
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Phoiph
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The "partial rebreather" and "non-rebreather are both "reservoir" masks (with a bag).

A non-rebreather mask has 1 way valves that prevent the rebreathing of carbon dioxide PROVIDING the flow is high enough (10-15 LPM) to keep the bag at least 1/3 filled with 02. It has to make a tight seal, and if the flow is not adequate and the bag deflates too much, the person could be deprived of oxygen. With proper flow and seal, it can deliver 90-100% 02.

A partial-rebreather mask is similar but has open valves that allow a portion of room air to enter and mix with 02. It also allows rebreathing of some carbon dioxide, which is sometimes necessary in certain illnesses (e.g. COPD) where the person's body requires this "cue" to continue the breathing response. The bag must be kept at leat 1/3 full, and the 02 flow requirement for the non-rebreather mask is 8-12 LPM. With proper flow, it can deliver up 60-90% 02.

People using either reservoir masks require supervision to make sure the bags stay inflated at all times.

The "Simple" or "Hudson" mask does not have a bag...it is just a mask that covers the nose and mouth with holes on the sides to allow carbon dioxide release and mixing of some room air with the 02. The flow requirement is 6-10 LPM, and with proper flow, delivers up to 60% 02.

Although the simple mask may not deliver as high of a percentage of 02 as the reservoir (bag) masks, it is an adequate and much safer option for use with a home hyperbaric chamber...

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foxy loxy
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Thanks toyswalk for the shared camaraderie! [Wink]

Yes, Phoiph, the mask IS a rebreather mask... Shoot! I was excited about it. Thanks for the heads up. I was hoping you would have something to say on the matter! [Smile]

Def. will be asking my Dr. about it. So far I seem to be responding to it anyway so maybe I don't care! Yay! Yay! and Yay! LOVE my tank so far!!!

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Haley
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Thank you
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soccermama
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Can someone enlighten me on the difference between a concentrator with single flow versus dual flow and whether or not you need an oxygen monitor?

Thanks!

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Phoiph
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A single flow concentrator has 1 hook up port (for one person), and a dual flow has 2 hook up ports, to accommodate 2 people at the same time.

On a dual flow, the Liters Per Minute (LPM) is also split between the 2 people (in other words, a 10LPM unit will only put out 10LPM regardless of having 2 ports).

A built in oxygen monitor is an essential feature on a concentrator in my opinion, because it will sound an alarm if the purity drops below 80% (on an AirSep) for any reason. (Otherwise, how would you know there was a problem?)

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jcarlnew
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Phoiph,

Just for clarity purposes, some concentrators have a green light on them also. I have two that don't have the light but have the alarm. Are you saying to just have the alarm as a minimum or the light also. In addition, you can take the concentrator to many local oxygen providers and they will put a gauge on them to tell you what your unit is producing.

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Phoiph
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Hi Jcarl...

Different manufacturers have different lights and audible alarm indicators.

The AirSep New Life Intensity 10LPM, if equipped with the oxygen monitor feature, has a yellow light and audible alarm if 02 levels drop beneath a preset level. When the unit is first turned on and is warming up, the alarm sounds briefly, and the yellow light will come on. It will go off when the unit has reached the desired 02 levels.

The SeQual Integra 10LPM, if equipped with the oxygen monitor feature, has a green, yellow, red light, and audible alarm.

While warming up, all 3 lights will come on and the alarm will sound briefly, then the red and yellow lights will go off when the unit reaches optimum 02 levels.

At normal operating 02 levels, the green light is activated. At slightly lower than normal levels, the yellow light will come on (but no audible alarm). The red light activates and the unit alarms (and may shut down) if 02 levels fall well below normal levels and/or the system otherwise malfunctions.

I'm not sure about other kinds of concentrators, but you can look up operating manuals online.

Yes...oxygen equipment suppliers have 02 monitors (these are expensive to buy) and they will usually check the 02 output of the concentrator for you. It is a good idea to have the 02 output checked after a concentrator has been shipped...or periodically if your unit doesn't have an oxygen monitor feature.

Also...the external filter should be cleaned weekly (or more often if you have pets)...just wash in warm soapy water and air dry thoroughly before replacing.

My area is dusty, so I often take the filter outside and clap it between my hands in between cleanings.

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soccermama
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How can you determine the life of the compressor. Do they have hour meters like the oxygen concentrators?
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Phoiph
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Yes, they have "odometers" which show how many hours they have been used. Some are external, some are internal, some are analog, some digital, depending on the age and make of the concentrator.

The quality concentrators are designed to be run 24/7, for tens of thousands of hours. A 3 year warranty could potentially cover almost 26,000 hours if the person was using it continually.

If you are thinking of buying a used unit, although you can't be sure of the history, it should still come with a warranty (usually a current warranty isn't transferrable from private owner to private owner though....).

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Marnie
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For those still considering HBOT therapy...

Here is a link to how HBOT effects the immune system:

HBOT stabilizes CREB ***(= cAMP responsive element binding protein)***:

http://www.ncbi.nlm.nih.gov/pubmed/23146993

CREB and the immune system:


http://www.jimmunol.org/content/185/11/6413.full

:-) !!!

BTW...

***HIV-1 *** Tat protein down-regulates CREB transcription factor expression...

http://www.ncbi.nlm.nih.gov/pubmed/11156964

And HBOT is now being used to treat PTSD at our naval bases!


http://webcache.googleusercontent.com/search?q=cache:Zy81MTGAbiYJ:http://www.vocativ.com/culture/science/new-frontier-ptsd-treatments-hyperbaric-oxygen-therapy/

See # 18 here under Current Accepted Applications of HBOT:

https://clinicaltrials.gov/ct2/show/NCT00670891?term=lyme+HBOT&rank=1


Elevated cAMP impacts cGMP levels also.

Elevating cGMP is under trials for AD via inhibiting PDE9 - preventing cGMP breakdown.

PDE4 breaks down cAMP. cAMP -> CREB. PDE4 inhibitors are being researched to treat "autoimmune" as well as fragile X (have less cAMP).

Forskolin + ginger?

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soccermama
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Fascinating articles! I'm hoping that HBOT will improve restorative sleep.

Phoiph, have you heard of an onyx concentrator? Is it ok to get another type of concentrator as long as it run 10LPM with 20 PSI?

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Nula
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So far, I've only read 7 pages of this thread, but will read all of it once the brain fog clears.

Thanks so much to ALL of you for sharing your mHBOT stories. Greatly appreciated :-)

I'm considering mHBOT treatment but have a full-blown case of babesia WA1/duncani (IGeneX PCR/FISH test positive) ...

Is there anyone on here doing mHBOT despite a Babesia duncani diagnosis? And in this case I am not referring to a clinical diagnosis, but a positive PCR/antibody/FISH test?

Thanks!

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I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ...

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Phoiph
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soccermama...

The Onyx is made by Airsep, and is their model marketed for "industrial" purposes (e.g., jewelry making, glass blowing, etc.).

It doesn't have the built in oxygen purity monitor option, and from what I can tell, it doesn't appear to be less expensive than the AirSep New Life Intensity...

Here's a link with the specs:

http://www.chartindustries.com/Industry/Industry-Products/Gas-Systems/AirSep-Commercial-Products-Division/AirSep-and-SeQual-Brand-Self-Contained-Generators/Onyx

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Phoiph
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Hi Nula,

I had a positive Babesia blood smear prior to starting mHBOT...

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Nula
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Thank you, Phoiph :-) Will respond to your PM as soon as I get the chance!

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I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ...

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foxy loxy
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Nula, I have tested positive for Babesia... TWICE. And I am two and a half months in on mild HBOT.

When I first started, I will admit to feeling like I maybe had a babesia flare. Air hunger, sweaty, etc. but since that flare, it improved.

My Dr. said he often keeps his patients on Babesia meds because he wonders if mHBOT doesn't work as well for that infection. He doen't believe it makes it worse, in his experience.

Hope this helps! [Smile]

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Nula
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Thank you, foxy loxy. This is very helpful!!

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I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ...

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spinning122
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Hi Nula,

I have also tested positive for Babesia (and Bart)...had treated previously with the typical Babs meds but it kept "coming back".

Fast forward to 658 (1-hr daily) dives later... I didn't realize that I have no Babsia symptoms anymore, didn't even realize it until you asked about it.

Phoiph [Smile] you'll be happy to hear that I finished another quarter at school with straight A's..only able to take a couple classes at a time but working my way through slowly but surely.

Still dealing with what I feel are brain/gut/hormonal issues though. Severe fatigue and feeling of set back if I am stressed or push myself too much (and by push I mean trying to be normal doing normal ppl things).

I wish you all a happy new year full of hope and healing. I am not out of the woods yet but making my way slowly through it. My greatest advice would be to feed yourself with only the most nourishing foods, supplement as needed, get adequate and restful sleep every day, and just keep on diving.

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joahsark
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Phoiph ( or anyone with severe brain symptoms), as I've posted, severe brain pressure and the dizziness , anxiety etc that go along with that are my most horrible symptoms, it never lets up only has degrees of intensity.

My question is that mostly every time I'm in the chamber it gets dramatically worse as the pressure climbs. I have been able to get up to full pressure with the concentrator and have been doing it mostly daily except for a three week break recently due to a horrible brain herx, 30 dives total. I feel a lot more sick inside the chamber. Is this normal while healing the brain or something that may be dangerous? Thank you, trying not to give up.

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joahsark
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Phoiph ( or anyone with severe brain symptoms), as I've posted, severe brain pressure and the dizziness , anxiety etc that go along with that are my most horrible symptoms, it never lets up only has degrees of intensity.

My question is that mostly every time I'm in the chamber it gets dramatically worse as the pressure climbs. I have been able to get up to full pressure with the concentrator and have been doing it mostly daily except for a three week break recently due to a horrible brain herx, 30 dives total. I feel a lot more sick inside the chamber. Is this normal while healing the brain or something that may be dangerous? Thank you, trying not to give up.

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Phoiph
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spinning123...

Thanks for the update! CONGRATULATIONS on not only your accomplishments with going back to school (and straight A's), but your commitment to mHBOT...

And...for understanding that this is a journey/process, and it continues to evolve. I experienced improvements/enhancements even after 2 years of diving, well beyond when I thought I was back to pre-Lyme baseline.

(BTW, I'm now at 4-1/2 years of diving, and I had a very stressful 2015...lost my mom and aunt within 3 months of each other, 2 friends took their lives [one with Lyme], made multiple trips back and forth across country...cleaning out their homes, making arrangements, settling affairs, etc., and have kept the pace without any signs of regression.)

I also agree with and appreciate your simple advice to others. I often marvel at how long, circuitous, complicated, and confusing the Lyme maze was for me, when it all came down to a simple plan. All part of the "journey"...

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Phoiph
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joahsark...

How fast are you pressurizing?

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foxy loxy
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joahark, I too have a lot of brain symptoms. I have head pressure, waves of anxiety and quite a variety pack of neurological head sensations.

I too have seen it feel worse sometimes in the chamber. Nothing so scary though that it makes me want to quit.

Just wanted you to know you are NOT alone even though it may seem like it.

I actually haven't seen many people with this issue. Even my Drs kinda look at me like huh? Mostly no pain. Just misery.

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spinning122
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Yes, I agree with foxy loxy, joahsark... you're not alone with severe brain symptoms. Although I have largely controlled these symptoms with a low-salicylate ketogenic diet and magnesium supplementation. How are your magnesium levels?

Perhaps intercranial pressure is a problem since it gets worse with the diving pressure added? If this is the case, I find pressing firmly on certain points at the back of the skull useful for releasing this pressure buildup:

 -

Basically, I lie face down on a massage table and have my mom use her elbow to gently but firmly rock against specific points all along the base of the skull.

Phoiph, what incredibly stressful and painful times these must have been. All the more gratitude I feel towards you for so generously donating your time and effort to help all of us, THANK YOU!

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Monti
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I agree with spinning122 in regards to all the Phoiph does for us. What a difficult time you had to endure. How incredible it is that the amount of stress you dealt with didn't knock you down.
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Phoiph
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Thank you very much for the sentiments!

I'm just VERY grateful it all happened when I was well and could handle it...and not when I was ill...it would have been completely devastating at that time.

It is a testament to mHBOT...

Happy 2016 to everyone!

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purplehaze
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HAPPY NEW YEAR TO ALL HERE and happy safe diving in 2016

spinning122,
could you please elaborate on the low- salicylate ketogenic diet,
what did yours consist of exactly, I'm curious

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spinning122
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Hi purplehaze,

I am hesitant to give diet advice because I'm rather unusual in that foods high in salicylates (basically most plant matter and the yummiest stuff like avocados [Frown] ) tend to give me migraines (I have not figured out why yet), but I wouldn't necessarily recommend it for anyone else? Basically, you have to work out what works for you since we are all unique and special little snowflakes [Wink]

But basically, I eat nutritious foods high in good fats (good balance between omega-3 and 6...most ppl have too much 6 nowadays=inflammation, DHA is real important for brain health). I tend to eat sardines, salmon, bone broth, grassfed beef, grassfed liver (bison, lamb, beef) and other offal meat, eggs, ghee, tallow... it's just been trial and error and trying to get the most nourishing foods in me without triggering negative effects.

I am most interested in healing my brain at this point. And to give you an idea why I do what I do...
Andrew Scarborough- Managing brain cancer and epilepsy with a Ketogenic Diet

This intelligent young man puts together a ketogenic diet and supplement regimen to manage his incurable form of brain cancer and epilepsy, and I am very interested to following his brain healing journey. He is also starting HBOT soon, which is exciting.

Hope that helps!

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Haley
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Happy 2016 to all of you special little snowflakes ❄️

I want to tell you that I am taking cordyceps and my energy has improved substantially. have also added a couple of other sups, but I believe the cordyceps is getting the oxygen deep into my system. I don't know if all brands are good. I take my docs brand. Ifsmed.com

Cordyceps increases cellular Oxygen Absorption by up to 40%.

http://www.earthpulse.com/src/subcategory.asp?catid=11&subcatid=55

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Phoiph
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Hi Everyone...

I don't know if any of you have been following Lymeboy's thread, "Pericardial Effusion", but he's been in a precarious crisis state, and I have been very concerned for him:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=133186;p=0

He has tried it all, as many of us have, and is out of options and at the end of his rope physically, mentally, and financially. I suggested that he consider mHBOT, but the cost is completely prohibitive for him, even if there were cooperative sharing options.

So...he decided to start a "GoFundMe" campaign in hopes of raising funds for a chamber... [Smile]

I know of another person who raised the funds for a chamber this way. And...when I recently checked out the site, I was surprised to see, for example, that $11,000 was raised for a pup's vet bills in less than a week...

If this works out for him, it could be a possible option for others.

Since Lymeboy's campaign isn't included on a public search engine, he needs our help to post and share his link with any promising contacts, groups, and resources we can think of...

https://www.gofundme.com/tdhtwkm4

Many thanks in advance!

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joahsark
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Thank you so much FoxyLoxy, good to know I'm not alone, and yes, I agree not a whole lot of people with this particular horrendous symptom. I do find that those who have it find it extremely rough to get rid of and all of the docs I've seen agree. Holding out hope the chamber can help repair some of the brain damage. The pressure does lead to pain especially at the base of my skull and into my neck. Horrible. I hope you've found relief?

Spinning122, it is most definitely inter-cranial pressure. It is constant, not only in the chamber, just worse in there. Pressure points have not helped unfortunately.

Phoiph, I am just letting the chamber pressurize as fast as it does by itself with the valve closed. I de-pressurize very slowly as it makes me even sicker than going up in pressure. Going to try to go back to just the chamber without the mask for awhile.32 dives in, definitely no changes in brain symptoms but I know it may take quite a long time. Committed for at least 6 months, if nothing after that I'm back to being sure this pressure will not end.

Thank you all for taking the time to respond. Wishing all of you the very best on this journey!

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me
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Hi Friends. Please read the following.:

quote:
Originally posted by Phoiph:
Hi Everyone...

I don't know if any of you have been following Lymeboy's thread, "Pericardial Effusion", but he's been in a precarious crisis state, and I have been very concerned for him:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=133186;p=0

He has tried it all, as many of us have, and is out of options and at the end of his rope physically, mentally, and financially. I suggested that he consider mHBOT, but the cost is completely prohibitive for him, even if there were cooperative sharing options.

So...he decided to start a "GoFundMe" campaign in hopes of raising funds for a chamber... [Smile]

I know of another person who raised the funds for a chamber this way. And...when I recently checked out the site, I was surprised to see, for example, that $11,000 was raised for a pup's vet bills in less than a week...

If this works out for him, it could be a possible option for others.

Since Lymeboy's campaign isn't included on a public search engine, he needs our help to post and share his link with any promising contacts, groups, and resources we can think of...

https://www.gofundme.com/tdhtwkm4

Many thanks in advance!


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Phoiph
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joahsark...

I would definitely slow down the rate of pressurization (by using the valve). You should take a minimum of 10 minutes to inflate, and 10 minutes to deflate. For you, I would try 15 minutes for each...

I had constant, severe head pressure that, when I started mHBOT, would become more acute behind my ears and around the sides and back of my neck when pressurizing. (It felt like my head was going to implode or explode, I couldn't tell which...)

Of course, all of this eventually resolved.

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joahsark
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Thank you so much as always Phoiph!!! It's so reassuring to know someone else did have this. I will pressurize much slower. Happy New Year!
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toyswalk
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Dive 30 Report. I'm going very cautiously, pressure only for now, today I did 56 minutes. I plan to get to 60 minutes, stay there for a week or so before starting to add supplemental oxygen.

mHBOT has absolutely life changing for me! My main complaints are mobility, fatigue, weakness. All are so bad that we had to rig up a system using a winch, pulley, triangle grab bar and a couple of pots/pans to get me out of the chamber. It keeps getting easier everyday! Walking (using my walker) is getting easier, life has gotten a little easier. I'm starting to look forward to things for the first time in a long time.

Thankful to Phoiph and all the contributors to this very informative thread. I'm So Happy!!

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