As someone who has recovered from severe Neurolyme and coinfections with mild hyperbaric, I wanted to share some thoughts on the Protomyxzoa posts I have been reading...
I have not been tested for PR; I stopped testing for things a couple years ago when I started to improve with mild hyperbaric, and testing for that parasite was not common at the time.
I do have theories about PR and mild hyperbaric as a possible treatment, however.
PR is reportedly a Babesia/malaria-like protozoan organism that thrives in oxygen-rich blood cells, which may intuitively cause one to suspect that oxygen therapy would promote growth (as many people suspect is the case with Babesia). I do not agree, however, and this is why:
***Hyperbaric oxygen therapy promotes free radicals (i.e., oxidative stress, reactive oxygen species [ROS], etc.) which are damaging to protozoa (fortunately, studies show the body protects itself from this damage through increased production of natural antioxidants).
Here is a quote from a study of the effects of ROS on Babesia in dogs from a veterinarian journal:
"...Many parasites including protozoa are sensitive to oxidative stress. Sensitivity to oxidative stress has been reported in malaria (Rockett et al., 1991), hepatozoonosis (Kiral et al., 2005), tropical theileriosis (Visser et al., 1995), and babesiosis (Stich et al., 1998). Reactive oxygen species (ROS) and Reactive Nitrogen Species (RNS) are powerful oxidants and nitrating species that can inactivate enzymes and initiate the process of lipid peroxidation and nitration, which leads to radical chain reactions that further damage membranes, nucleic acids and proteins (Muller et al., 2003). These processes may ultimately lead to the killing of parasitic organisms (Rockett et al., 1991; Kiral et al., 2005.)..."
***PR reportedly requires iron to thrive, and ROS disrupts the availability of iron to pathogenic organisms
***PR reportedly decreases blood flow and causes hypoperfusion; hyperbaric reduces hypoperfusion, inflammation, and promotes angiogenesis (growth of new blood vessels)
***PR reportedly competes with the body for oxygen, causing fatigue and impaired metabolic activity; hyperbaric improves oxygenation within cells, tissues, fluids, etc.
***PR reportedly creates biofilm; hyperbaric is known to destroy biofilm (this is one of the ways it assists in wound healing)
***Hyperbaric increases efficiency of immune function and detoxification, as well as promoting the release of stem cells, allowing the body to deal with pathogenic organisms as it was meant to do...
I believe that one needs to get out of the mind set of "chasing bugs"...(because there are ALWAYS bugs!)...and instead focus on what will assist the immune system in gaining the upper hand...once the immune system is in charge again, many of these pathogens become a "non-issue"...
I also seriously question the wisdom of "starving out" PR by simultaneously starving your body of the good fats needed to repair and rebuild neural tissue...
Posted by CD57 (Member # 11749) on :
Thanks for this very good post. Agree that the chasing bugs thing is crazy. However, it is all the LLMDs have to offer at this point and it does seem to work for many (not me).
I really like how you back up what you say with the latest research of what we know. Very little is known about PR. The starving it out thing makes no sense to me. I would be in hospital without Magnesium and fat for my brain. No way.
Posted by nefferdun (Member # 20157) on :
If you don't have PR and know absolutely nothing about it, don't knock the only treatment known to work.
Dr. S wrote this;
"Some treatments are simply useless. For example, the use of hyperbaric oxygen (HBOT), for tick infection treatment, fails. The use of HBOT in mice is not applicable. To prove this, I decided to perform a self-funded study examining HBOT benefits on Lyme, Babesia, Ehrlichia and Bartonella.
After 120 treatments at 2.4 atmospheres for 90 minutes each, all participants still had clear positive findings for all four infections. There is no validity to the claim that HBOT "kills" Lyme disease."
Posted by CD57 (Member # 11749) on :
Yeah, we have seen that. Wish he would go into more detail. I think the 2.4 has been brought up as a problem. Also, were these patients on meds or supps, or did they just do HBOT in its own? Did they have improved symptoms (if so, who cares about the tests)? What type of testing did he use? Muscle testing or the latest available testing for all infections? etc etc.
Problem is there is very little research on using HBOT for infections. Esp mHBOT. I think Phoiph found it all.
Posted by Phoiph (Member # 41238) on :
nefferdun...
I very well may have had PR, I just wasn't tested for it at the time. I was positive for the bands that supposedly suggest it, however.
I am well aware of this doctor and have read his self-funded hyperbaric "research" (which is full of holes, by the way). He is the one that charged me over $2,000 for a very short, unhelpful phone consultation without even bothering to keep our appointment for the follow-up call as scheduled.
I realized this topic would be controversial, and, in my opinion, that is a good thing...it promotes different viewpoints which we all can learn from.
I don't believe that "chasing bugs" is the answer, because it usually involves a treatment that concurrently tears the body down, rather than builds it up, and puts the into a state of further imbalance, which eventually must be corrected to attain a healthy state.
The low-fat diet is just another example of this, in my opinion...(healthy) fat is crucial for our bodies to function (i.e., produce critical hormones, healthy cell membranes which allow cells to function, build/repair neural [nerve/brain] tissue, help the body absorb vitamins and nutrients, provide energy for repair and rebuilding, etc.).
Depriving ones body of vital nutrients (even in a healthy person) in hopes it will "starve" a protozoa may not leave the body the energy and vital building blocks it needs, not only for fighting illness, but even to function or maintain status quo...much less rebuild and heal...
Posted by Phoiph (Member # 41238) on :
CD 57...
Agreed...and one of the reasons we don't see more research on HBOT/mHBOT for the many conditions it treats, is because one can't put a patent on oxygen...therefore, there is no big money to be made on it...so why would "big pharma" pay the price to do research?
Posted by CD57 (Member # 11749) on :
Certainly. The only way we are going to see "clinical trials" is if the LLMDs conduct their own. Apparently Schaller did this and did not get positive results (although this appears to be going on test results, not symptoms, and who knows what tests were used).
Lyme MD is now blogging about his own "clinical trials" using mHBOT but seems to be more focused on clinical results rather that tests, which IMO is really cool....
Posted by CD57 (Member # 11749) on :
Dr. Paul Harch ("The Oxygen Revolution"; hbot.com) has been doing HBOT/mHBOT research for over 20 years.
His color images of before/after SPECT scans are impressive...
Posted by Phoiph (Member # 41238) on :
I wanted to share some additional information about my previous blood smear test results from Dr. F, that I just pulled out of my file and re-read.
I had a blood smear microscopy done in 2007 which indicated moderate protozoal forms (babesia spp).
I had the photograph of the blood smear re-interpreted by Dr. F in 2010 to clarify, as I had read that there was some controversy surrounding his findings back in 2007, and possibly some new developments in diagnosing additional organisms, etc.
The 2010 report indicated "hypochromic erythrocytes, epierythrozoans, hemobartonella, or hemoplasma, ring forms suggestive of protozoans (potentially Babesia spp, Plasmodium spp, or FL1953").
So, by this interpretation, it is quite possible that I had FL1953 after all.
This is relevant, because I am well now thanks to mild hyperbaric (among many other healing properties, hyperbaric has a profound effect on destroying biofilm colonies), and a diet high in good fats to help repair/restore the gut and nervous system (currently contraindicated for FL1953).
Food for thought...
Posted by CD57 (Member # 11749) on :
That is interesting! Their wording is so confusing, isn't it. I can't tell if the 2010 report is saying you have ALL those thing, or one of them of that first group, plus the ring form.
Anyway, impressive.
Posted by j77 (Member # 42716) on :
Phoiph, What are the bands you referenced in your post that are suggested of PR infection?
Posted by Phoiph (Member # 41238) on :
The 2007 report only identified Babesia, but in the second interpretation in 2010 (possibly resulting from 3 more years of experience), Dr. F identified hypochromic erythrocytes (suggestive of anemia), and any or all of the others listed in the first group, and definitely ring forms in the second group.
I am not convinced that certain bands are definitive for FL1953, but I had the implicated bands of 23 and 41, and very low CD57.
Posted by seibertneurolyme (Member # 6416) on :
phoiph,
One potential issue I see with your interpretation of your test results. Unless you had the test repeated by Dr F in 2010 then there is no way to know actually what organisms you still were infected with in 2010 or whenever you did the hyperbaric. I am assuming you did some sort of treatment between 2007 and 2010.
For example, hubby had multiple blood smears done by Clongen and F lab over the course of several years beginning in 2007 thru 2012. His haemobartonella or whatever that infection was went away with aggressive treatment for bartonella. The number of coccobacilli decreased from many to several to a few to none over time and symptoms decreased accordingly.
Unfortunately his babesia did not go away despite aggressive treatment.
As to whether you had FL1953 or some other species of blood borne protozoa -- there is no way to know without doing additional PCR testing which the F lab has been doing since June of 2012 for an additional $100.
I do agree with you in regard to the necessity of good fats.
At this time I am not really convinced of the benefits of hyperbaric if babesia is an issue, but as CD57 pointed out -- there really is very little info.
I personally think that just as different strains of lyme cause different symptoms -- arthritic versus neurological for example -- I think different strains of babesia or similar blood borne protozoa cause different symptoms and respond to different treatments.
Bea Seibert
Note -- F lab found 3 different blood borne protozoa but not FL1953 in blood drawn postmortem and Clongen found babesia on a blood smear reported on the day of death from ARDS (lung faiure). Hubby only had mild biofilm so that is not always an accurate indicator of the severity of a babesia or protozoa infection in my opinion.
Posted by Phoiph (Member # 41238) on :
Hi Bea...
I am very sorry about your husband.
Actually, I did not do any formal treatment between 2007 and 2011, when I started mild hyperbaric, and I was more ill and symptomatic than ever at that point.
I was unable to continue any Babesia (or Lyme, bartonella, etc.) treatment after 2006-2007, as I had become very toxic and chemically sensitive (including having my vision turn yellow from Mepron).
I am really not interpreting test results, or even claiming that I had FL1953, merely pointing it out as a possibility based on what Dr. F stated in his interpretation of my blood smear.
My point of this thread is that I don't believe that "chasing bugs" or eliminating nutrients from your diet is the answer...as for me and many others, it becomes a maze of dead ends.
My purpose is to raise awareness of another option for treatment that worked for me and gave me my life back...
Posted by Phoiph (Member # 41238) on :
surprise...
Awesome about the coconut oil...
Cost of hyperbaric treatment is definitely an issue for many people.
Since I have recovered, I have been working on ways to help people access mHBOT more affordably...and have a network started where people can explore alternative financing options, rent-to-own options, and/or cooperatively sharing costs/use.
Some people are currently cooperatively sharing a mild chamber for as low as $10/session...
Posted by surprise (Member # 34987) on :
Sorry, I deleted my previous post, I get uncomfortable with controversy, and didn't want to offend anyone, patients of Dr. F or folks treating with low fat diet for FL1953.
Basically I said my opinion, that now that Dr. F has up to 10 'variants' of this 'bug', and isn't sure if it's bacterial or fungal, it's hard for me to get behind,
and my recent significant turning point and progress adding good fats (example coconut oil 3x a day) and cutting out glucose.
Hyperbaric - one of my daughter's previous Dr.s, a leading bio- med autism Dr., told me he said to his wife:
If I ever have a stroke, get me in a hyperbaric ASAP!
That is wonderful about helping folks offset the cost----
Posted by Kudzuslipper (Member # 31915) on :
I can relate. I think we all think that if we just figure out that one last bug it could be the missing link. But what do we lose while looking for answers?
Most people have stuff... If they don't have a Lyme Dx... They don't think they can get back to perfect.
I struggle with this... Sometimes I want to try more... Sometimes I just want to live as best I can and stop worrying. I think it is ok to do both... Take breaks as it were... As long as you've you treated the initial infections... If your chronic you just do the best you can.
Posted by Haley (Member # 22008) on :
Interesting Phoiph. I have tried the mild oxygen chamber once and I almost blew out my eardrum.
I have severe pain in my right ear so I don't know if I am a candidate. I can tell that it would work if I didn't have this issue.
PM me the information on people sharing a chamber.
Posted by Phoiph (Member # 41238) on :
Hi Haley...
Your PM mailbox is full...
Posted by seibertneurolyme (Member # 6416) on :
phoiph,
If you did in fact have no treatment during the years between your F lab test and treatment with hyperbaric that is very significant.
Hubby did try hyperbaric once before he was actually diagnosed or had any tickborne treatment. The doc who was a well known neurologist in Florida stopped the treatment after about 20 minutes as hubby's tremors were getting worse (this was before actual seizure like activity became such a major issue) and he was also having dry heaves in the chamber.
We never tried hyperbaric again during the next 11 years of treatment.
I do wish there were some controlled studies on hyperbaric, especially with babesia patients.
I am curious as to how many dives you did over what time frame and if you took herbs or did rife or anything else in conjunction with the hyperbaric. Also, since you consider yourself recovered do you still do dives as maintenance?
Bea Seibert
Posted by Phoiph (Member # 41238) on :
Bea...
Thank you...I feel it is very significant also, which is why I am spending so much time on these forums...to try to get this message out.
As I mentioned, I was unable to do any formal treatment (including antimicrobials, herbs, Rife, etc.) for 5 years prior to starting mild hyperbaric, and nothing in conjunction with mild hyperbaric (except a gut/nerve healing diet, and gradually increasing exercise as soon as I became able).
I had been homebound for those 5 years, and severely ill and getting worse, so I am quiet sure that I had not rid myself from any of the previous infections.
I am more than willing to answer all your questions...but please read this thread first (all 3 pages), as I think some may have already been answered...
I am using MBOT and do not know what the outcome will be. I know only in my instance it decreases pain and helps recovery after exercise. I will know a lot more several months from now. If it works, I have 4 additional family members who have not been able to beat this disease over a long period.
I am perplexed over the request to use real names as I see very few people who do that. The main one I have seen is Beau Seibert (SP) who appears to be a well-informed lady that tragically lost her husband to what I recall to be Babesia. With private messaging available it seems it has been the intention of this board not to use real names of doctors or people who post as lyme and its treatment can still be targeted by naysayers whether the medical community or insurance companies. The latest and greatest treatments routinely come and go on this board other than the standard antibiotics, herbs, rife and now MBOT. Time will tell if MBOT is a great way to regain a higher level as Phoiph has experienced.
Posted by oxygenbabe (Member # 5831) on :
The request for real names is because I don't trust this amount of evangelism (and I use hbot myself as you know) and worry that there is another reason for it, besides feeling better--such as getting commissions. Sorry but I have to be honest. I am not accusing, but I have rarely seen someone promote a therapy so heavily, and not use their real name.
Posted by mlg (Member # 35383) on :
Phoiph I really appreciate your input. I have not yet gone that route and there probably is more than 1 way to skin a cat. I agree that we can't just be in kill mode with the bugs. We also need to strengthen our own immune system so that it will make it's own battle. There are different ways to boost own immune system: PEMF, juicing, acupuncture, infrared sauna, homeopathy, etc.
I do think that proto is the number 1 worst infection just in my opinion.
Posted by Robin123 (Member # 9197) on :
Hi - responding as a moderator to Oxygenbabe's request for Phoiph to use their real name. Lymenet policy does not require anyone to use their real name. That's up to each of us whether we choose to or not. For many, pseudo names are chosen for protective reasons.
Whatever is written here on the board, always please evaluate it for yourself. We generally remove any posts that sound egregiously dangerous to health.
Posted by oxygenbabe (Member # 5831) on :
Robin123, I understand. I feel my concern is important to bring up as all over the internet, not just on this board at all, there is sleight of hand. It is easy enough to do in the virtual world. It has happened before on this board that a person promoting a therapy as having cured them, was for instance receiving or going to receive commissions. So once in a while I give voice to this concern, because I have utilized this potent adjunctive therapy extensively myself, and as helpful as I feel it is, I have rarely heard of anybody being cured by it alone--as I'm sure, time will bear that out, for those on this board who do try it will find it helpful (or not--some people just don't do well with it)--and are not likely to have a functional cure.
Posted by Robin123 (Member # 9197) on :
Hi - we all have the right to discuss and evaluate treatments here, so thanks for your attention to this, oxygen.
However,people are not allowed to solicit on the board. Please report to us if they are and we will delete the solicitation.
Posted by JCarlhelp (Member # 15957) on :
Thank you Robin123. I have used this board for many years and the last time I ever saw somebody have to cease a therapy they found successful to them was the Biomat. I have never seen the intensity of the exchange going on here. I don't believe Phoiph has ever said this will cure everybody. She has expressed an enthusiasm for something that took her from being in bed to being back to significantly improved health to live her life, which I think many of you would love to just function at a higher level. Oxygenbabe believes it to be a helpful therapy but not curative. I have exchanged many emails with Phoiph and never once did she try to get me to buy anything through her. I have bought two chambers on Craigslist, one for myself and one for a young lady that is like a doctor to me. They are older and I know I take a risk but I got great deals. Phoiph gave me many suggestions to look out for in a used chamber and many of her experiences to be careful in the treatment. She has told me that she receives no financial gain for helping people try this treatment, she is just passionate about the possibility that somebody could experience the near miracle she did having experienced what many of you have to one degree or another. Robin123 in my mind has put an end to this conversation expressing the board policy on names and stating simply if someone knows that someone is soliciting for their benefit report them for the moderators to consider. My guess is that people have expressed faith in multi-level marketing products before. I love Shaklee magnesium but am not a distributor. I would respectfully request that Phoiph and Oxygenbabe continue to give us their experience, advice, research etc for those of us that by our own choice decide to give it a try. Their knowledge base is the most valuable thing we can get from this board even if they have different opinions and personal experiences. Happy New Year and hope and pray people get better and their are some major break-throughs in getting this terrible disease behind all of us and our families.
Posted by soccermama (Member # 35101) on :
I second JCarl's opinion. I do not like the angst I hear in some of the posts.
Phioph is just sharing her opinion. We all want to know if something is working. People need to do their due diligence about a product and not just purchase something based on a testimonial.
There is enough research out there to demonstrate that mHBOT has therapeutic significance.
It can be a key for turning on people's immune system which will fight an infection.
Most people who are chronic have an immune system that does not seem to be functioning well.
Posted by oxygenbabe (Member # 5831) on :
I raised a question--and it is a legitimate question. I've raised it just a few times, while there are multiple threads by Phoiph. I haven't demanded it, or said her experience isn't legit. Just raising a question for people to seriously contemplate before wholeheartedly believing. I've seen miracle cures come and go on this and other boards--sometimes people got commissions and sometimes they didn't, but you can be sure they never volunteered if they were getting commissions.
My recommendation is to go to a practitioner to try it--call Oxyhealth and they'll tell you who is in your area (if you don't know). Alternatively, you can lease it--without buying it, and see if you feel better after a month or two or three. That's not too much of a loss. If you do feel better, the leasing fee goes to purchase. You could always send it back if you find a good deal on craigslist, of course.
Posted by JCarlhelp (Member # 15957) on :
Oxygenbabe,
I would like to hear any of your recommendations, protocols, suggestions, what it helped you with, how often you still do it. You obviously have a great deal of experience. If it is already on the board let us know.
Thanks
Posted by CD57 (Member # 11749) on :
Phoiph has never recommended that I buy anything from her and she has also swapped many emails with me. I think she is honestly paying it forward bc she saw such a significant increase in quality of life. She has also put me in touch w a company who has a lease to own program, just the thing mentioned above.
Also her results have been astounding.
I'm following LymeMDs blogs as well about mHBOT; very timely.
Posted by sixgoofykids (Member # 11141) on :
I'm closing this thread because it has strayed from the original topic. Anyone who wants to discuss hyperbaric is free to start another thread.
We have been given no evidence that anyone is selling anything.