posted
if anyone has experience with this protocol plesae pm, i can not use the search function
Posts: 443 | From The North Star | Registered: Jan 2010
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
We considered HBO and even attempted to schedule an appointment to do it for our daughter but were unable to work out the timing. I'm glad that we didn't because later we learned some negative things about it. (That was over ten years ago, and she has recovered from Lyme, Babesia and Bartonella now through other methods anyway, in case you are wondering.)
Eventually, we found a different LLMD who was also board certified in HBO, and he flat out stated that he didn't want any of his Lyme patients doing HBO because it's not innocuous and that he did not believe that it would work for Lyme anyway.
We live in Texas, and one of the studies on HBO for Lyme was conducted here back in the 1990s. I had the opportunity to meet with the researcher who conducted that study and discuss it with him at length. (My husband had previously done HBO with him successfully for another condition, one for which HBO is approved.) So, I knew about some of the study participants who did HBO here at TAMU during the original Lyme study.
One young man was a teenager at the time, and he seemed to improve sufficiently to the point that his father invested in an HBO at home so that he could continue doing HBO after his treatments here had finished. The father was a pharmacist, so it was legal for him to buy such a unit because one needed some kind of medical certification to be allowed to purchase one since this was a medical grade unit -- not a little cheapie HOB unit sold for home usage or to mountain climbers as a simple little tent-like contraption.
Long story short, the pharmacist who owned the big medical grade HBO unit eventually began discouraging folks like us from doing HBO and began recommending other treatments instead. He was very ethical to do this because he had a huge investment in HBO his unit and he had been allowing others in his area to use it, for a fee of course.
Fast forward several more years. Eventually, the obituary of the man's son, who was a 23 yo college student at the time, appeared on the internet. I felt especially sad for him. He died of some kind of cardiac complications or heart failure in his sleep. (I don't think it was a heart attack, per se.) My guess is that it was electrical conduction abnormalities which are not uncommon in late-stage Lyme, whether treated or untreated.
To the best of my knowledge, HBO has fallen out of favor among LLMDs who used to use it to treat Lyme disease. If anyone is still using it, then either that practitioner is uninformed or else s/he has a profit motive and his/her own vested interest at heart, not the welfare of the patient.
I notice from your geographical location that you live in a state where there is a big HBO facility, so this might be why you are being told about all of the advantages, but none of the disadvantages, of using HBO for treating Lyme. HBO is useful and is approved legitimately for certain other medical conditions, and insurance will cover those uses of HBO.
While HBO might or might not be helpful with some of the symptoms of Lyme on a short-term basis, HBO is not a cost-effective, long-term therapy that will cure Lyme.
Posts: 4563 | From TX | Registered: Sep 2002
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
It takes MULTIPLE dives (40+) and it is critical that Pycnogenol (1mg per pound of body weight) be taken also.
Very expensive, but...HBO may help. The following link was written by a lyme patient who did HBO treatments as part of her healing.
P.S. With any and ALL lyme treatments...keep pumping in probiotics!!! They are CRITICAL. Vary them.
HBO therapy is avail. at 2 locations in the Sarasota, Fl. area. Dives run about $100 per dive. Insurance does NOT cover HBO therapy as a lyme treatment.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
My LLMD is in the process of getting HBOT. He went to training last week. He told me what Marnie said, it takes many dives to see and improvement.
Since he feels I have plateaued he is looking at all the angles to see what I may need to do next.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
I spent ten sessions in that tube and the only thing it did to me was giving me double vision for the longest time afterwards.. It absolutely did nothing re: Lyme. Total waste of time and money.
Posts: 123 | From Los Angeles | Registered: Oct 2006
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Tammy N.
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Member # 26835
posted
TX Lyme Mom - what are some of the disadvantages? I had heard only good things, although I never really looked into it myself. Curious to know of the "down side".
Thanks, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Hey everyone. I just bought a MILD hyperbaric chamber a week or two ago for my lyme and it REALLY helps. I have alot of skin problems with collagen and it helps stimuate regrowth of collagen. Also noticed huge changes in my cognitive function since I had a SPECT scan showing low blood flow to the brain from inflammation. This has all cleared up, not to mention my chemical sensitivities etc. I know other people had alot of different gains in using the treatment but I am still early in my treatments.
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Building Up to an hour+ of "non-aerobic" exercise every OTHER day- like going out for a long walk in the sun (bundle up & "sunscreen" IF needed)... & exercising as the abx levels are 'peaking' (typ. 1/2 to 2 hrs after a dose- see drug sheet), is a boat-load better... and cheaper!... than any pressurized O2 chamber treatments... as far as I'M concerned!
B.B. 'ketes' don't "like" increased internal tissue oxygen levels, increased temps (above ~100F) or Lyme-fighting antibiotics nearER by.
Capillary flow improves with exercise. Just Do It. (See Dr. B's 2008 guidelines on Rehabilitation, Rehab/Physical Therapy) Worked for me!
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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sammy
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Member # 13952
posted
jpsmom, what kind of questions do you have? I've done 85 HBOT dives for Lyme. I might be able to help but I don't know what info you need. You can PM me if you feel better asking that way.
A great resource is WildCondor's website. Check it out, she explains how HBOT works along with her own personal experiences. If you are thinking about HBOT for Lyme this is a must read. http://www.wildcondor.com/hyperbaric.htmlPosts: 5237 | From here | Registered: Nov 2007
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feelfit
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Member # 12770
posted
I had a horrible experience. lost my ability to swallow for nearly 3 months....not complete ability, but i had extreme difficulty initiating a swallow and was on soft foods and barely eating.
all after ONE dive in a mono-chamber at a well known facility knowledgeable about lyme.
I did well the entire dive 90 minutes. but when they were bringing me up, i lost my ability to swallow.
still have intermittent swallowing issues to date.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Lauralyme - do you think the problem with hyperbaric is that they stopped treatment (your community?)
Perhaps, if somoeone owned their own mild chamber, and continued treatments, the gains would be more long term?
Posts: 641 | From Nevada | Registered: May 2009
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Lauralyme
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Member # 15021
posted
Could be, that they didn't do enough treatments, ran out of resources to continue with it.
How does a person aquire a mild chamber?
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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kidsgotlyme
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Member # 23691
posted
I might be out of my element in speaking here, but I think that the reason some may have trouble with HBOT is because of co-infections.
Bb doesn't like oxygen, therefore this treatment seems like it would be good to get rid of it.
The problem is that babs loves oxygen, so if you have it and don't know it, you are setting yourself up for failure.
This is why we have never tried this treatment. I don't trust the lab results enough to say for sure that their is no babs lurking around.
I'm sure that others know a lot more about HBOT than me. I hope this helps.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
Laura, a mild HBOT setup can be purchased for $5,000 or $8,000, or more if you want fancy.
It's not cheap, but if it could be used in one's own home long term for maintenance, it would be a lot less expensive, in both time and money, than traveling to a clinic. Some of us live in remote places where the nearest hyperbaric clinic is hours away. I've always gravitated toward treatments I can do at home, long term.
Posts: 641 | From Nevada | Registered: May 2009
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posted
I am new to learning about Lyme. What is a bab vs. Bb? Looking into oxygen treatments for my husband. He is suspected to have Lyme based on his ELISA but waiting the results of his Western blot. We have read alot about how chronic or late lymes (which he is based on his symptoms, if he is truly Lyme) and how heavily medicated with antibiotics (many had nothing but negative things to say) for years... so we started looking into homeopathic docs and treatment. Should we be looking at seeing an Lyme specialist first to try antibiotic treatment?
-------------------- Webb Posts: 2 | From Gardnerville, NV | Registered: Jan 2012
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posted
Bab is short for babesia a malaria type co-infection, Bb- is borellia burgdorfei (may not have spelled right)- I suggest in having a llmd, post in searching for Dc & what area [s]. I have done all & just started IV's again & planning to incoorperate hbot with Iv's- I did have much success with HBOT but herxed like crazy around day 12 & vision issues were a problem but always got better- here is a link of someone near death that recovered from hbot & Iv's/orals http://www.wildcondor.com/hyperbaric.html Its a rough road but God gives us strenth!
Posts: 443 | From The North Star | Registered: Jan 2010
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Hello, all...
I had severe neurological Lyme w/Babesia & Bartonella for 8 years...considered an antibiotic failure, and so ill I was homebound for 5 years straight.
My symptoms were extreme and relentless; too many to list here. I was told, even by LLMD's, that I needed a miracle, and there was nothing more they could do for me (I tried many, many protocols with never any improvement, just a continual spiral downward).
I eventually became so toxic and environmentally sensitive that I could do no treatments for 5 years before starting MILD hyperbaric treatment w/supplemental oxygen (I bought my own chamber and self-treated 1 hour daily).
I now have my life back...working again, running (I had been a runner for 17 years, pre-Lyme), traveling, etc. It has been a miraculous recovery, and it is 100% due to mHBOT (along with meticulous diet, and gradual exercise).
I believe success depends on the frequency and consistency of use...many people say they "tried hyperbaric, but it didn't work"...but if you query them, inevitably they didn't do it consistently or frequently enough...or for a long enough duration. You must be committed to this treatment to have success. Also, research is showing that lower pressures are better for treating certain neurological conditions, so may be why some people with neurological Lyme who used higher pressures in the hard chambers didn't progress.
I almost made the fatal mistake of returning my chamber after 40 consecutive "dives", not feeling any improvement at that point. Fortunately, I was talked into continuing treatment, and felt the first "change" (not necessarily "improvement") after about 2 months.
It was a rocky, 2-step-forward, 1-step back road, but after several months, although I was not completely well, I was functional again, and after 1-1/2 years, I was "back"...
Now, 2 years from the beginning of treatment, I am still noticing benefits from the chamber...and truly have my life back...very active again...no medications...no restrictions...
Low (pressure) and slow WORKS...I'm living proof...
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