Long-term daily mHBOT and full recoveries w/ ongoing maintenance

Jesse2233

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Dr Harch on determining likelihood of HBOT response...

Response is "proportional to the size, volume, and location of ischemic penumbral tissue (IPT)"

IPT is low blood flow tissue that surrounds dead tissue (not functioning but not dead, sleeping so to speak). SPECT scans can identify this and predict response according to Harch.

He runs back to back scans comparing brains pre-first HBOT and post. Brains that show even slight improvement post tend to have continuing improvements 90% of the time. Brains that do not show these immediate improvements tend to improve 50% of the time. This SPECT comparison and identification of IPT (in conjunction with a neurologist or brain imaging technician) might be one way for patients to gauge in advance whether an investment in HBOT is likely to pay off.

I am going to contact Dr Harch and try to determine what he generally finds in CFS patients SPECT scans and what protocols he believes works best for us.

It would also be interesting to know what Dr Byron Hyde would say about IPT size in his patients as he tends to regularly order SPECT scans. Unfortunately I've been unable to contact him in the past. @Dechi any thoughts?
 
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Dr Harch on determining likelihood of HBOT response...


I am going to contact Dr Harch and try to determine what he generally finds in CFS patients SPECT scans and what protocols he believes works best for us.

It would also be interesting to know what Dr Byron Hyde would say about IPT size in his patients as he tends to regularly order SPECT scans. Unfortunately I've been unable to contact him in the past. @Dechi any thoughts?
Hi Jesse2233,

I'm feeling very rough at the moment with Flu like symptoms/headaches.I'm in my 70s now and I don't take the Flu jabs......I have been interested in HBOT and read quite a lot about it in the past.

A few years ago I had many sessions of over a period(best part of a year).I don't appear to have Lyme disease but I do have rickettsial disease(two types at least) which is similar to Lyme and is transmitted by ticks and other insects.Florence Nightingale is thought to have Rickettsial disease(Dr Jadin's book?"A disease called Fatigue")
I have PEM and CFS....plus hypopituitarism(PTHP),allergies,gut and brain issues and Dr Myhill's Tests showed I have mitochondrial dysfunction.I also have B12 and pernicious anaemia too....plus osteoporosis/from parathyroid disease.

I didn't experience the benefit from HBOT that I had hoped.I'm not sure what pressure was used...usually 4 or 5 people were in the capsule at one time.However I have met people that it has benefited.I think where it is used for Rickettsia or Lyme etc a certain setting may be required.....and the treatments should be close together.
I see you have mentioned SPECT scans.How much do they cost?(especially for UK)....and what type of specialist is required to read the results(neurologist?)If any of the readers are in UK please leave comment or PM me...Thank you...
 

Jesse2233

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Hi @Abha

Thanks for sharing your experience. Do you know how many / often you had sessions? And did you experience any noticeable benefit at all?

SPECT scans are expensive here in the US (~$1.5-2k), I'm not sure about the UK. I believe an experienced neurologist or a nuclear medicine doctor could interpret the results.

An interesting SPECT series from Dr Harch

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Hi @Abha

Thanks for sharing your experience. Do you know how many / often you had sessions? And did you experience any noticeable benefit at all?

Hi Jesse2233

My recall is not so good now but I think I had 3 a week for 6/7?weeks....then twice a week after that for about 6months plus.I had hoped it would do me good and the staff(maybe two full time....and rest were volunteers)were fantastic.However,at that pressure? unfortunately I didn't experience any improvement although I had great hope for it..

In a case like mine I think one requires a very experienced doctor and very skilled operators(re fixing pressure etc).Many of those who sat with me felt that it helped their bone breaks/other illnesses.Some patients had been attending a few times a week for many years.I met motor bike chaps who had suffered broken bones and they reckoned the chamber helped to set the bones faster.Gaelic footballers/soccer players used it too for various injuries and breaks.

I see the American costs are about what I had guessed.I'm sure the UK costs will be similar.It may be somewhat cheaper in a country like Poland.Rugby players have gone there in the past for cold room treatment(like a fridge?)..and the champion jump jockey AP Mc Coy(now retired) used that type of treatment to heal his broken bones(many) after falls in jump riding.That type of treatment may help us too(?)
 
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Thanks @Abha

Since you were in a clinic I'm assuming that it was a hard chamber? (i.e. glass tube)
Hi Jesse,

I didn't attend a Clinic.The chamber was in a house and run by a charity(as far as I recall).The chamber reminded me of war time mines(used at sea) or like the metal used on old boats.It was made of metal with some glass windows.It wasn't a modern one.I had a quick look on the web for a photo but can't find one.
 

Jesse2233

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Another cool substantial improvement story (don't think I've posted this one)... seeing a trend of people combining mHBOT and ketogenic diet with success. Perhaps the two have synergistic effects on the mito

Hi All, Sorry I haven't been here lately but I just got back from a vacation! First time in over 20 years.

I only wish I had found Phoiph and mHBOT years ago. At this point in my life I am fighting aging along with the remaining symptoms from Lyme/CFIDS/FM so it's hard to tell what my healthy baseline should be.

What I do know is that I've gone from disabled to functional, from a wheel chair to riding a bike on the trails and from home-bound to a 2 week road trip.

I can confidently say that my improvement has been from mHBOT and the Ketogenic Diet. No other variables that I'm aware of.

So, hang in there...just keep diving every day and don't micromanage your symptoms. The progress is very slow but when viewed from where I am, it it huge.

Hugs to you all and thank you for freely sharing on this forum. Reading your stories and the encouragement from Phoiph has kept me focused on healing instead of giving in to the illness.

I only wish we could make this amazing therapy available to everyone.
 
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Another cool substantial improvement story (don't think I've posted this one)... seeing a trend of people combining mHBOT and ketogenic diet with success. Perhaps the two have synergistic effects on the mito
"So, hang in there...just keep diving every day and don't micromanage your symptoms. The progress is very slow but when viewed from where I am, it it huge."

Hi Jesse2233,

The key part to this treatment may be that one has to do it daily ,as stated by the person in the extract above,in order to get maximum benefit from it.The right amount of pressure(whatever that may be)is probably very important too.

I enjoyed it but it didnt work for me the way that I had anticipated.
 
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With strong die off daily would be to intense for some people at first
Once a week is all I can do right now
Hi getting better,

You are correct...Those in charge of the HBOT centre that I attended broke one in gently...and at a lower pressure.However,once that stage has passed I think daily treatments may be better...Just my thoughts...

@Jessee2233....In the past I found that Acupuncture(cupping/moxibustion) carried out by experienced Acupuncturists(Chinese/German) definitely helped me at that time.There again I would have liked more of them over a longer period of time...They can be expensive however and I'm sure the costs have risen.
 

Jesse2233

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Another nice story (note this was at higher pressures than mHBOT)

Lyme and HBOT Info
I want to introduce myself to this group. My name is Melea. I am a 41 year old, blessed, mother of five beautiful, healthy children.
My 24 year old niece has suffered from Chronic Lyme for over 13 years, but wasn't clinically diagnosed until 3 and 1/2 years ago.

I was 17 when she was born, and


loved her as if she were my own. We are more like sisters, than Aunt/Niece.
So, that being said, I hope to convey the passion, to you, that I have

for her and to help people with this debilitating disease, through public awareness and education.
As Megan went through high school, we watched her go from a brilliant, vibrant teen...cheerleader, Homecoming Queen, High Honor Student with a Full Scholarship to ANY Florida school...to a bedridden, disabled, young adult in a matter of 3 years. It was heart wrenching.

We live in Florida, where Lyme "doesn't exist". So, after over 15 physicians, telling her she was "crazy", "seeking attention", suffering from "psychosis", addicted to pain meds, "depressed", "anxious", among numerous other forms of "diagnosis", she decided to travel to Hermitage, PA, to a Lyme Specialist.

She began ANOTHER excruciating round of high powered antibiotics. Her body became so weak, she couldn't tolerate the meds. So, she began to go without...only taking the pain meds, because without them she couldn't bear to even stand in the shower, or go to the bathroom, alone. She couldn't eat, from the damage the antibiotics were doing to her stomach.

We were all suffering not only for, but WITH, our beautiful Megan. Her physician told her about Hyperbaric Oxygen Treatment.

As Lyme sufferers know, Insurance doesn't cover treatment for this horrific disease, a majority of the time. Her physician expressed his concern of expense for the treatment. However, it was nothing compared to the amount we had already poured into her diagnosis and prior treatments.


So, on June 3rd, we had a fundraiser...in our TINY town of 5,000 people and raised over $10,000 in one day. The other $5,000 came in from donations stemming from the publicity of the fundraiser and word of mouth. God was so good!
In Mid-June of '09, she flew out and received Hyperbaric Oxygen Treatment, at a Specialty HBOT Facility in San Diego. After 40 consecutive treatments at 2.8 ATA's, and a 5 day booster 2 weeks later, SHE IS NOW LYME FREE!!

Please let me share her story, and the benefits of HBOT, with you! She wasn't on antibiotics, at the time of treatment. It's not the meds that treat the disease and kill the bacteria. It's the pure oxygen environment.

It has to be administered at the correct ATA's (Atmospheric Pressures) and for the correct length of time that coincides with your individual illness. Everyone is different, in some respects, but nevertheless, Lyme is always the same bacteria. Therefore, treatment is commonly given in the same amounts, to ensure it's effectiveness.

Most facilities and physicians are not as aggressive, as they need to be, with this bacteria. It is so sneaky and seems to, almost, have an "intelligence" of its own. The bacteria cannot survive in this pure oxygen environment, so it kills it...KILLS it!

Go to www.hboinfo.com and click onto the Lyme Link. Scroll down to "Megan's Story", and "Why she travelled from FL to CA for treatment"...That's my beautiful niece, who now, has her life back!

I have the privilege of living across the street from her. I, now, get to watch her walk up and down the front steps, walk over to my house, play with my babies, drive her car, and live her life, AGAIN!

Last year, at this time, I would literally sob as she couldn't even walk down the 5 front steps of their home. We would pick her up, in our car, to drive her to our house across the street.

She missed numerous family holidays and events, including her own sister's high school graduation. She has been where you are! But, there is HOPE!!

Don't give up! There is help! Lyme Disease has been pushed to the back burner for many, many years, and it's time to educate not only our country of the fastest growing infectious disease, but the whole world of this epidemic!

We can do this, if we become passionate and pro-active, about helping the victims that surround us. I weep as I sit here, reading your stories.

God has placed a burden on my heart to help people who are suffering from Lyme Disease. So, with His help, I will do what I can to help you. God Bless! Melea

http://www.mdjunction.com/forums/ly...ms/general-support/1255322-lyme-and-hbot-info
 

Jesse2233

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Interesting study done on Lyme antibiotic treatment failures. Note there are some issues with how this study was carried out (non standard number of sessions), and whether or not these patients would also qualify for an ME diagnosis. Also note the deeper pressure, and twice daily protocol

Effects of Hyperbaric Oxygen Therapy On Lyme Diseaseby William P. Fife, Ph. D. 29 January 1998
The purpose of this study was to determine if hyperbaric oxygen therapy affected Lyme disease caused by the spirochete, Borreliaburgdorferi. The spirochete B. burgdorferi is a microaerophilic organism carried by the Deer tick (Ixodid) and transferred to humans and other mammals by its bite. Symptoms often begin by a bulls-eye rash and erythemamigrans.


Symptoms may include pain in joints and muscles, sore throat, fever, swollen glands, and mental " fogginess". If not diagnosed within the first one or two months, the disease may become a chronic infection. At that time it apparently becomes sequestered in fibroblasts and other cells which, in turn appear to protect it against effective treatment by all known antibiotics so far tested. The disease is difficult to diagnose without serological findings and requires the skill of a highly qualified physician, experienced in treating this disease.

Rationale:It was shown by Austin that the spirochete could not survive if transferred in air to another host, but would survive if transferred in a gas mixture of 4% oxygen. This demonstrated that the spirochete could not survive in an oxygen partial pressure of 160-mm Hg (the partial pressure of oxygen in air), but could survive in a partial pressure of 30-mm Hg (which is the partial pressure of 4% oxygen at 1 atmosphere, absolute (ground level pressure). Therefore, it seems clear that a lethal level of oxygen for the spirochete falls somewhere between 30 mm Hg, and 160 mm Hg.

It also is known that while the inspired partial pressure of oxygen is approximately 160 mm Hg, at the tissue level, the partial pressure of oxygen normally is approximately 30-35 mm Hg. Thus, it would not be expected that breathing air at ground level would cause any damage to the spirochete. However, if the patient were placed in a hyperbaric chamber and the pressure increased to 2. 36 atmospheres, absolute (ata), the total barometric pressure would be 1794 mm Hg. If the patient were then to breathe pure oxygen the inspired partial pressure of oxygen would be 1794 mm Hg.

Inspired oxygen is diluted by carbon dioxide and water vapor in the alveoli, so that the arterial blood would be exposed to an oxygen partial pressure of approximately 1700-mm Hg, and the tissue oxygen would be between 200 and 300 mm Hg. This clearly would be above lethal oxygen levels for the spirochete since it is expected that oxygen normally would diffuse throughout all cells of the body. This partial pressure of oxygen can be safely achieved in a hyperbaric chamber, and the patients can tolerate this level for 90 minutes or longer quite successfully.

Protocol:This study was approved by the University Institutional Review Board. Subjects were selected from those referred by clinical physicians who were experienced in the treatment of Lyme disease. All subjects presented with a positive diagnosis of this disease according to the CDC criteria, including a positive Western blot serology of the proper bands.

All had failed intravenous antibiotics, and many were continuing to deteriorate even though still on various antibiotics. Subjects were given a briefing on the use of the hyperbaric chamber, including the risks, and signed a waiver and release in accordance with the Belmont Report. They were placed in the multiplace chamber and compressed to 2.36 ata, whereupon a plastic helmet was placed over the head and pure oxygen was administered. The oxygen flow pattern was such that the subject inspired 100% oxygen with each breath.

Subjects were able to communicate with the attendant in the chamber as well as with each other. Treatment duration was 60 minutes on oxygen, and in most instances the treatments were administered bid for 5 days followed by a two-day rest. Several different series were tried, ranging from 10 treatments to 30 treatments. One subject received 145 treatments over the course of 3 months.

Results:Ninety-one subjects completed a total of 1,995 hyperbaric oxygen treatments, although nine were eliminated later due to the presence of another medical problem not apparent during their treatments. These other medical problems were such things as babesiosis, ehrlichosis, hepatitis C, and previously unidentified neurological problems. Two subjects were eliminated due to the development of septicemia from IV catheters, and one because of recent breast cancer, although all three of them later showed an improvement of Lyme symptoms with hyperbaric oxygen administration.

Subject evaluation was carried out by an abbreviated questionnaire taken from a standard questionnaire used by several Lyme specialists as part of their evaluation. This questionnaire was designed so that zero reflected no symptoms, while ten reflected severe symptoms.

Although additional statistical evaluation still is being carried out, it appears that approximately 84.8% of those treated showed significant improvement by a decrease or elimination of symptoms. Only 12 subjects (13.1%) claimed no apparent benefit. Before treatment, the subjects had an average score of 114.12 (of a possible 270), and after treatment they averaged 49.27. This reduction of 64.85 points was statistically significant in a paired t-test (p=0.000).

The variability of the scores from patient-to-patient declined as well after the treatment series. The standard deviation of the scores was 56.00 before and 44.14 after treatment. The p-value of this reduction is 0.057 in a Fisher's F-test. Further, 58% of the respondents had score reduction of 41.86 points or more.

All except one of the 91 subjects developed severe Jarisch-Herxheimer reaction, usually appearing within the first 5 days of the beginning of hyperbaric oxygen treatment. In most cases, the Jarisch-Herxheimer reaction continued throughout the series of treatments, and in many instances continued for up to a month after the treatments were finished.

Most subjects then began to show major improvement that in some instances has continued for 8 months.
 

Jesse2233

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I got some information back from someone in touch with Dr Byron Hyde:
  • He thinks the SPECT scans shown on Dr Harch's website use outdated software and thus aren't showing the full range of data necessary to properly assess damage and improvement

  • His clinical observation is that ME patients show serious damage to the basal ganglia, left temporal lobe, and limbic system with up to 70% of the cerebelum involved (using SEGAMI SPECT software). Blood flow to the brain is 40-60% of normal

  • He believes there is neuronal damage due to oligoclonal banding found in CSF of ME patients shortly after onset. He considers this a form of autoimmune encephalopathy

  • He thinks HBOT can provide short term improvement, he has not seen it provide long term improvement in his experience (I wonder how many of his patients have treated daily for several months / years).

    He believes one would need to do a SPECT scan before and after treatment to truly determine improvement (Dr Harch does this in practice, but I do not know what SPECT software he is currently using or what he finds in ME/CFS patients. I am speaking to his nurse about these questions tomorrow).

    He says to be careful with anecdotal HBOT stories for ME because many of the patients may not in fact have ME (based on his Nightingale definition requiring a specific SPECT pattern, enterovirus in stomach tissue, sudden infectious onset, and a specific set of symptoms).
 

NelliePledge

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I had my third HBOT session yesterday I still couldn’t sleep til the early hours but I felt like the sleep was somewhat refreshing which it never is. I’m up early today for work being done on my house and brain is less foggy than normal. I was at a deeper pressure than before 24 rather than 16. Deepest is 33 sorry not sure what the measure is called. My ears were quite poppy this morning but that’s gone now. So far I feel like I will get benefits from this. I will be trying two sessions next week to see if I can ramp up the effect

I am doing low carb and have lost 13kg so interesting to see if there is any additional effect on weight loss