Kathy Boss
Frequent Contributor (1K+ posts)
Member # 3062
posted
If you have anyone in your area that offers this please just give it a try. It must be the right kind though.
My first experiance with this was with a treatment in Europe and Hyperbaric is quite common over there.
Back in 2002 when I needed it most the U.S. was not as familair with it and doctors did not know the extent of it's healing.
When I came back from Europe I new certain things worked for me. One of them being oxygen.
The closest I could get to oxygen was UVBI treatments with hydrogen peroxide I.V.'s. i could get several of these and was on my feet for almost 2 years.
I moved to CA, went without treatment for over a year and started having problems. 6 months I have been trying to get better.
I found this clinic in San Diego thank goodness. At least read about the benifits of Hyperbaric Oxygen and read the Fox Live news cast.
I have seen children with MS, Autisum, adults with strokes, injuries ect.........go into these chambers and all talk about how it helps.
Many go for Lyme and with consecutive treatments some have left Lyme free. As we all know Lyme usually leaves you with other problems too so I don't know how far I would stretch Lyme free but.....If their lives are better and they are sympton free for the time being than hooray for them!
I just finished 7 treatments and before going in my knees were very bad, head fog starting again, muscles hurting, the bottom of my feet in pain I almost can not stand.
Feet are 50% better and I don't understand why they are not like the rest of me that got so much better again.
The grass is greener, the sky is bluer even the red on the stop signs looks redder. My eyesight is so clear, knees do not hurt, muscles do not hurt.
But these feet...........ughhhhhhhhhhhhhh.
I wish I could have afford the 20 treatments like most do going in for Lyme but I could only do 7.
If anyone has any ideas on the feet I'm open for anything.
In your opinion, which HBO is the 'right kind'?
Posts: 375 | From Southeast | Registered: Sep 2002
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Kathy, I wrote you a PM. Despite what the clinics say (that you need 2.4 ata) I feel that what counts with hyperbaric is steady longterm treatment. I do my mild portable chamber for an hour once a week. It is not a cure but it is a profound modifier of this disease/infections. I can't imagine had I gone once a week to a clinic for the past 3 years how much that would have cost in time and $. My chamber is my most precious possession and has in my opinion saved my life and my quality of life.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
HBOT cost me $200 a pop, $4,000 for 20 treatments, and it did nothing to help. I might be able to see it as an adjuct treatment, but not at that expense. I am getting more bang for my buck with colonics.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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I don't think that there is much doubt that the right kind of HBOT Tx's can help. The problem lies with the cost of them. You probably spent about $1,000 for 7 Tx's. Sure it has given you some relief, but it will almost certainly be short lived if you don't continue them.
No one really knows how many sessions are required to get rid of lyme. I have read that some people have done them 3 x's a week for 6 months only to relapse after stopping them. Who can afford to spend that kind of money on something that will not last? Of course it all depends on how long one has had lyme, and how deeply it has penetrated into the various body parts.
That's what makes it so difficult to know how many Tx's are needed for each person. If I had an extra $50,000 lying around, I would probably give it a go. But alas, long term oral therapy is alredy putting me in the poorhouse.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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I have to chime in here... I am hopeful that HBOT could be affordable to everyone not only to us with lyme.
I have used this therapy along with oxybabe for over two years now. I can tell you all that I have treated a number of people mostly my lymies...
HBOT is an adjunctive therapy, when used in conjunction with abx therapy it is very effective.
In the two years (Short in HBO terms) that I have treated those with lyme this is what I have found. I have also shared this with my HBO colleages as well, and most agree.
If you have lyme and an underlying coinfection that is not being treated you will have a longer path to recovery.
If you have lyme and are heavy metal toxic you will have a longer path to recovery.
If you do not combine the therapy with ABX you will have a longer path to recovery.
If you do not treat the toxic load that a herx causes you will have a longer path to recovery. ( I prefer Ningia Red, google it!)
If you only use HBOT to treat lyme and no abx you will need close to 200 sessions (ouch)
I do believe that lyme is a non curable disease. However you can manage it and gain control over your life.
I no longer use Abx and use the chamber only about once a month, unless I feel something coming on like a cold. I do believe that if you have lyme use should do HBOT even if to boost your immune system.
I bought my chamber with the intention of offering HBOT at an affordable rate to those that can otherwise not afford it anywhere else. I still charge $55.00 per session. I have so far kept my comitment.
For the most part HBOT will put you in a better place. And give you a better quality of life.
Blessings to all of you,
Julia
(Click below if you want to see my chamber)
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
I am wondering if this can help with brain issues..We just got the results from my daughter's spec scan and it was "remarkable" with a few issues..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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I have used the mild HBO chambers--the cheaper ones like oxybabe uses. While I am in the chamber I get this very clear headed feeling that lasts for about half a day. It is really incredible and so much different than the usually brain torture I go through.
The problem in my case is that following this feeling, I get a herx like reaction that last for several days. I continue to do them because I am hoping for long term results. I think it is good for the brain, in particular.
Posts: 375 | From Southeast | Registered: Sep 2002
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The benefits to the brain from HBOT have been documented by many well respected Doctors. However the UHMS still has not approved brain injury as an approved condition.
Here is a link where you can do some research. ( scroll down to Lyme)
I hope this helps, Feel free to contact me if you choose to do HBOT. I will try and help you find a provider in your area..
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
In talking with many LLMDs, I have yet to find one that finds HBOT to be useful long-term. I have also not met any Lyme-infected persons that did HBOT, had an improvement and maintained the improvement once stopping. Thus, HBOT in my opinion is not a highly useful therapy for chronic Lyme disease. In children, some studies have shown that it may have longer-term value.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Scrambled Brain, I herx too if I use it daily, so I don't use it daily
Scott, just because you haven't met them doesn't mean they don't exist. I am one for instance who feels I owe my life to hbot and would be disabled without it. Also when I 'dove' at Great Barrington, there were several people there who did hbot for many months, with or without antibiotics, and had major improvements or remissions that according to the doctor, who became a kind of friend to me in subsequent years, held for years. Maybe they will relapse eventually but so far they haven't. Julia, is another, she did do IV for af ew months, wasn't very much better, from what she says, and then trained in hyperbaric and got her own chamber and did frequent dives, along with bicillin shots for a year, however she only did them weekly for a while, then moved to once every few weeks, from what I recall. She calls this low-dose antibiotic therapy with hypebaric and I believe credits hyperbaric with much of the recovery. Just because you haven't met her, she posts on this board and so do I and we both are strong advocates of this therapy. In addition, wildcondor often posted about how helpful hbot was for her.
Posts: 2276 | From united states | Registered: Jun 2004
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Kathy,
I've spoken a couple of times with one of the Lyme patients who is featured on the San Diego clinic's website and it was miraculous for her. I also spoke at length with someone affiliated with the clinic, and would certainly consider it at some point in the future.
I have read, however, on the California Lyme Disease Association website that if one has Babesia, HBOT is not good because Babesia thrives in oxygen unlike Lyme. We're still not sure if I have Babesia or not so I'm holding off.
I have heard of some temporary vision problems from HBOT. Did you have any of those issues?
My feet problems make walking and driving extremely difficult. It came on during Bart treatment so I'm pretty sure it's Bart, not Lyme, for me. Unfortunately I had to abandon Bart treatment.
Were you ever checked for that?
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
Bartonella is aerobic also. You're not going to kill aerobic pathogens with Oxygen and pressure. That's probably why there are so many mixed results with HBOT. If you have straight lyme, it's a killer.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
If you can continue the treatments, there may be some value. I suspect most that find it useful still have treatments from time to time. I do not think that the benefits last when you stop entirely....at least none of the people I know that have done it and I also have not heard any LLMDs speak highly of it for a lasting improvement. If someone has had that event take place, excellent news. I just think that people should know before starting to consider that it may not be a significant treatment for many.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Scott, I believe part of the reason people relapse is they don't do it for long enough. Because it is so expensive, clinics say that 20 or 40 treatments is enough. It's not. I believe the clinics are misguided and so are the LLMD's. I've said on here repeatedly, and Julia echoes me, in fact, when she said upwards of 200 treatments if you aren't doing antibiotics, I was in complete agreement; that you need to do 3-6 months of HBOT to go into lyme 'remission.' If you can do it with something like bicillin (which is very good for lyme) like she did, that's great.
People also are misguided about 'aerobic' infections. They are afraid to do hbot if they have bartonella or babesia. I think that's often incorrect. I have babesia and it didn't cause me a problem. It helps a lot. Babesia damage blood vessel lining and hbot helps that. Babesia oxidizes the red blood cell, and chronic infections may disrupt heme, and hbot helps fix that too.
From personal experience in clinics and at home I know that for some it was the turning point in their health. What's unfortunate is how expensive it is.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
at this point in my lyme education, i feel like there are so many variables and complications to most treatment choices and their variou soutcomes, i certainly don't want to assert one way or another what might work -- or not work -- for other patients..... but i do want to report our experience, so that people have as much info as possible in trying to figure out what they want to try.
my partner dove at the facility in great barrington (at 2.4 ata) for 4 months, twice daily 1 hour sesssions or once daily 90 minute sessions, doing a total of over 130 hours. this was more than the doc there thought would show improvement if it was going to help. she was great, the facility was great, and he was doing all kinds of other supportive and bacteriocidal tx during that time, including oral abx and IV rocephin. unfortunately, he had no improvement whatsoever in his symptoms, which were primarily neurologic, and the doc there thought of him as a clear treatment failure. we were very clear that this had no reflection on the quality of the treatment he received, but rather was particular to his particular illness profile. he had/has lyme as well as multiple co-infections.
on the other hand, there was someone else he dove with who did see some very significant (and i believe lasting) improvement, although apparently it only became really evident after several months after ending his treatment. i heard that he was doing well about a year after his treatment. for whatever it's worth, he was on no other treatments during his HBO tx. no idea whether he is still doing well.
our LLMD's have been divided in their opinions of HBO. of the two we have spent the most time with, one thinks it can really help some people with neurologic lyme, and other thinks it only really helps people who are not primarily ill due to their lyme infection. which of them is right is completely unclear to me. perhaps both.
what is clear to me is that it's a treatment that does help some people (for whatever reason) but does not help others, even if they do it properly and for a long time. it;s also clear that it takes dedication and repetition in order to see benefit, if you're one of the ones it does help. (but of course, so does any other effective treatment, so that probably shouldn't deter people.)
interestingly, i know someone else who was treated (at much lower ata, with a different protocol) for birth related disability and brain injury -- NOT lyme -- at the same facility, and they did extremely well with the treatment.
i wish the best of luck to all trying to figure out these very difficult questions. it's no picnic, with no clear answers.i have come to believe that no one -- not even the very best LLMDs -- really knows for sure what the right treatment for each individual patient will be without real experimentation, prolonged efforts, creativity, and lots of patience....
best, flossie
Posts: 773 | From yahoo.com | Registered: Dec 2002
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Hi flossie, nice to see your name again. I hope you and bf are doing well.
I think that's a fair assessment--for some its a very positive experience, for others it's a key to getting well, and for still others it is not that helpful.
I think it has very little to do with what infections you have. I got very sick after a tickbite six years ago, and after six months of horrific symptoms that six weeks of doxycycline did little to help, I did a month of hyperbaric and I always credited it from pulling me out of a disaster. Then 18 months later I did 2 months at Great Barrington. The problem was that many of the gains didn't last, though I never returned to the 'disaster' state I'd been in before the first month of dives, where I felt I would end up on disability and totally nonfunctional.
I'm responsive to the therapy, don't do it with antibiotics, and consider it part of an arsenal to help,not cure me.
I suspect that those who do poorly have significant defects in methylation, and very low glutathione. They are already in a highly damaged oxidative state, and adding more oxygen and thus free radicals, pushes them further down the line. I doubt it has much to do with the infections one has, as I said.
This new suspicion or hunch of mine is due to recent research I've been doing. Lyme lowers glutathione, so probably does babesia. For some folks who already have low glutathione and impaired methylation, getting these bugs crashes them totally.imho.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
HBOT is great. After about 60 dives at 2.4 ATA, I was doing well. The pain in my back down to my toes had just about disappeared. I didn't have the money to keep going, so after about 3 months I noticed a slight slide, then I slide a bit but leveled off and never got worse. So even a 1.5 years later I'm way more stable than I used to be. Now I'm using an mild chamber at home and getting an oxygen concentrator for it, so it should help. Then I'll go back once a week at the regular place and every day do the mild one at home.
I don't get the critics of HBOT. In a lot of cases, nothing cures Lyme. So we do things to get rids of it for a while, and this is one way for many.....and often the only way. I can't get anything else, like abx, to work. HBOT is the only thing that helps. So if I have to eventually buy a hard shell chamber for my house to lead a normal life, that's what I'll do. People buy upgrades when the buy a house such as granite countertops, wood floors, tile, that cost 10's of thousands. So why not add something like a Fortius 420 chamber as an upgrade. Posts: 600 | From Las Vegas, NV | Registered: Nov 2004
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posted
If anyone is interested in a hardshell let me know, I may have one available.
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Thoughts about why hbot might be so helpful to some:
1) Nobody talks much about the effects of pressure, even 'mild' pressure on the immune system, but they are profound. Pressure alone will switch you from a sympathetic (fight or flight) to parasympathetic (calm and connect) state. The effect of pressure on the CNS is salutary. That's perhaps one reason the dead sea, which is below sea level, is helpful.
2) More oxygen goes into your system. Since we are oxygen-dependent creature, there are all kinds of benefits to tissue that is downstream of serious biotoxin damage from lyme and coinfections. I think it is particularly helpful for the damage done by lyme and by babesia, which as I understand, is akin to malaria but much smaller and can damage blood vessel lining
3) The oxygen helps repair cells, helps them repair faster, and helps all kinds of other functions like digestion etc
4) The oxygen probably shifts the terrain, suppressing some organsims that grow in low oxygen conditions, and it tends to be that such anaerobic organisms are the ones that give us the most trouble (though not always)
5) The oxygen may be functioning as a free radical to some extent, though not as profoundly as say ozone or hydrogen peroxide, nonetheless, it m ay be helping the immune system thatw ay. However that is something to consider and to take antioxidants like glutathione, Vitamin C etc during therapy in my opinion although some clinics say not to. I disagree but I do think you should not take them on the day of your session
6) Research from Univ of Pennsylvania shows hyperbaric oxygen actually stimulates stem cell growth, and that is obviously important for the body to repair itself
7) It seems to also stimulate the immune system. I'm not sure why. This may be mediated through nitric oxide (NOS)
It can be synergistic with antibiotics but I've known folks to do and folks who don't.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
bumping this up because there are a lot of great stories about hyperbaric treatment from years past. Good info!
Posts: 641 | From Nevada | Registered: May 2009
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Both Kathy Boss who was here many years ago tried it and so did Oxyenbabe. For most it did not work well enough considering the cost.
Our problems are more a matter of detoxing the terrain than killing the bugs. If you don't do the first, the bugs stay.
There is simply no way around it.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
Hi GiGi, I've already done a ton of detoxing, with Klinghardt methods and others, for years, and you are right, it is completely necessary, and helped me tremendously.
And to the point about HBOC costing too much - if I buy a chamber and use at home, the cost is sustainable for years. That's what I'm after. But I totally agree with you on detoxing.
Posts: 641 | From Nevada | Registered: May 2009
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