posted
I'm strongly considering trying HBOT therapy. I'd like to hear from those of you out there that have tried it. Roughly $4K is what there are asking here for 21 sessions of 90 minutes each. The chamber claims to have great success with their Lyme patients. I've been on oral antibiotics for about a year now with mixed results. What do you guys think? Pls give me your opinions. Thank you!
Posts: 20 | From San Diego, CA, USA | Registered: Apr 2005
| IP: Logged |
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Have you searched the archives? A number of people have tried it. My sense of their comments was that it worked while they are on HBOT but that the positive effects wore off quickly. Check for yourself by using the Search function. This way you have access to several years worth of feedback.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
| IP: Logged |
I use HBOT and I have my own chamber. I do firmly believe in the therapy. It is a great ADJUNCTIVE therapy to compliment your antibiotic therapy. It will put you into a better place as far as your recovery is concerned...However, it is also my opinion that Lyme is a disease that will stay with you for life.
If you take care of your body and maintain a healthy immune system then you will be able to have a better quality of life living WITH Lyme, IMHO.
HBOT will help your body absorb the antibiotics, facilitate crossing of the blood brain barrier and also offer killing effect for the spirochete.
I own a standard hyperbaric chamber. And I use it every other week or so... Mainly to keep my husband happy because I feel fine. I have been antibiotic free for almost a year now. And I believe that I am at 90% of my former self.
Have I had any relapses? No, however I treat any little thing that I even think is going to effect my immune system aggressively.
That means if I feel a cold coming on I will take extra vitamins, suppliments, abx and an hbot session. I do not take another 40 sessions...Perhaps one or two. I do not take a year of Abx just enough to treat the cold etc.
If you are having trouble with abx therapy HBOT will afford you the ability to use a lower dose of meds and still maintain therapeutic effects. Over all you will have a better quality of life.
The problem with HBOT is not the effectiveness but the cost. In most cases it is not covered by health care insurance. And the out of pocket expense can be prohibitive...
This is my experience with HBOT. I am sure that not everyone will respond the same. However I believe that if nothing else has worked for you then you should give it a shot if you can.
Also, I heard that United Health care is the most freindly carrier when it comes to HBOT reembursement for Lyme...
I hope this helps,
Best Regards,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
| IP: Logged |
How much did your hbot cost you?
Posts: 594 | From NJ/NY | Registered: Jun 2006
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I have done clinic (deep dive) hbo and have a home (mild dive) chamber.
My experience is that you need at least 3-4 months of frequent dives, and then follow up at least once or twice a week for a while, to really get into a remission with hyperbaric.
Julia (Boejr) used bicillin shots with her hyperbaric, for, I believe a year.
When I did a month, and then a year later, two months of clinic hyperbaric (2.4 ata--90 minutes) I felt much better for a while and slowly relapsed.
Hyperbaric does not kill it, it helps suppress it.
I think Julia's approach was very smart, as lyme is susceptible to bicillin.
I use my mild chamber as maintenance.
My point is that, just 20 or 40 dives won't do it. It's in such case a waste of $ most of the time. It's a marvelous and incredible therapy but it requires longer term treatment.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
posted
We did a lot of deep-dive hyperbarics, too, and thought it was great. It does get lyme under control...for a while. In fact, I thought it was a miracle - my girls were cured! But no...it came back in about a month. We do treatments on an as needed basis for my daughter, which is about every 3 weeks, sometimes more often. Because of hyperbarics, she has a life. My other daughter can no longer do any hbot due to babesia getting worse (it likes oxygen). Nobody can keep up this kind of expense for long, and I am hoping our other treatments will phase out hyperbarics.
Posts: 2 | From San Diego | Registered: Jul 2006
| IP: Logged |
Lymelighter
Frequent Contributor (1K+ posts)
Member # 5310
posted
Does anyone have any data or studies on HBO's efficacy for Lyme? I'm dealing with a dubioius HBO duck who want data to hit the HBO switch.
Babe, are the home machines worth the scratch?
Posts: 1010 | From Mars | Registered: Feb 2004
| IP: Logged |
can Julia or anyone expand on that, where did you get that info., in there a studey or this is based on expereince of ...?
I am in tx for babs now but considereding hbot this fall, at about the point I thought I would be done with the babs tx (but who knows right) and my child would be in school-- of course combined with antibiotics
thanks-
Julia
Posts: 208 | From Santa Fe | Registered: May 2006
| IP: Logged |
posted
oops I meant to sign as JIF (not confuse folks I am a Julia too, but not the one with the hbot chamber or knowledge!)
Posts: 208 | From Santa Fe | Registered: May 2006
| IP: Logged |
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
This info from a doctor friend who used to own a series of chambers: 50% get better; 50% get worse, or no improvement. I was one of the ones that got worse. I will never again go into any of these chambers.
I got well doing it my way - without chambers.
The doctor no longer owns the chambers!!!!
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
| IP: Logged |
posted
years ago someone, either told me, or implied that hbot is contraindicated in babesiosis.
at a univ. campus conference on tick-borne illnesses for the public, i brought up hbot during the q&a, and afterwhich, an undergrad. student told me he a negative reaction to it, attributing this to his babs, and mentioned one other babs case wherein the person had seriously negative effects, again attributing it to hbot.
there are a host of medical conditions for which hbot is contraindicated; for one, lung problems wherein there is a gas exchange problem(oxygen in, and carbon dioxide out), with chronic pulmonary obstruction, and emphysema being but two examples. a history of heavy smoking, and a serious asthmatic condition are not the only things that can cause these two conditions. i don't know the others.
Posts: 2708 | Registered: Feb 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I have babesia and did fine with the chambers; and one of the women who 'dove' with me when I did 2 months up in Great Barrington definitely had babesia along with lyme (she had the fevers and night sweats), and she did no antibiotics. She did 3-4 months of daily dives and then for another year, she did twice weekly dives of 45 minutes and apparently went into remission and so far has stayed in remission.
It is highly unusual for people to do that much hyperbaric; another woman up there did, I believe, 6 months of daily dives.
It is simply not prescribed long enough because of the expense.
Yes, it gave me a life too since I cannot take all those antibiotics.
My suggestion is to do intensive dives in a clinic chamber for a minimum of 2 months, better yet 3-4 months, 90 minutes once a day (easier on the system and the time schedule than 60 minutes twice a day, and no proof that one is more effective than the other) and then get a mild chamber for maintenance unless you are near a center and can afford continuing to go, or you can buy and operate your own monochamber, as Julia does, but she trained as a hyperbaric tech and fireproofed her home and uses oxygen tanks--a much more difficult setup to create than a mild chamber.
All the above is an expensive proposition and if antibiotics can do the trick for you they are certainly easier. But if they can't, I think this is one of the best therapies around.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Ozone saunas look to have the same "results" at a cheaper price.
See my post today "In plain English". I talk about hyperbaric therapy and ozone (sauna) therapy...how they seem to work or at least help.
Personally, IF doing these, I'd take SOD by Solaray after treatments.
Not only are infected cells hit impacted, so are healthy ones.
In other words...hit...replenish...hit...replenish (with the antioxidant enzymes).
A few months ago someone posted more about ozone saunas and how they really helped. They did not seem to trigger a herx though which is peculiar.
I'll try to figure out why.
Good catch about babesia...if co-infected!!!
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
Yes, HBOT is too expensive for most and especialy for someone who has to shell out alot of money every month on abx and other various suppliments. I do my best to address this issue but I am only one person. If I ever hit the mega jack pot maybe then I will do more : )
Yes, the cost of purchasing a chamber can be prohibitive! Do I recommend everyone buy a chamber? No... It has serious implications if not properly maintained and if not used properly as well.
Can someone with Babs do HBOT? I now believe so. However if you have not addressed the babs with abx you should not try it...Don't want to test your fate. Babs does thrieve in oxygen but will die at increased pressures. ( As Per Dr Kindwall )
I have also met and heard of individuals with Babesia that have done HBOT with and without any ill effects. But the consensus in the hyperbaric community is to exclude those with Babs only to avoid complications. HBOT is one of the safest medicines out there.
If you would consider that HBOT will boost your immune system, increase you metabolism, and has killing effect on the spirochete without the side effects of abx then you can see the true benefit... IMHO Lyme is a life long disease that will take a toll on all of you body just by virtue of all the drugs that you need to keep it at bay.
The cost of a chamber can run you from 40k to 80k depending on the size and model. That's for a used unit. Then you have to build out the area and do the neccessary fire proofing etc.
Is HBOT the magic bullet? NO. I don't think that there is a magic bullet for lyme and it's creepy co infections.
However I do believe that this therapy will put you into a better place as to your health. And from there you can manage your health, pace yourself, and maintain a healthy lifestyle you will enjoy a better quality of life.
I believe that HBOT is a great adjunctive therapy. That is most effective while on IV antibiotics. I did the long term low dose antibiotic approach and complimented it with HBOT.
NO, I did not spend my waking hours in the chamber. But I do believe that after the intial 40 sessions you should do maintance sessions at least once or twice a month in order to allow your body to maintain a healthy inmmune system and general wellness.
I hope that I have been able to address some of your questions. However I suggest that you do your due diligence. No one therapy seems to be right for everyone and a multidisciplined approached seems to me to be the best approach. IMHO...
Many Blessings to you all,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
| IP: Logged |
I keep thinking i should do it--just a feeling, have a chamber in my town--(Julia your prices are a bargain compared to Santa Fe, but with the convenience it definately makes sense to do it hrere, if I do it)
literally selling (sold) the ranch to do it (but I am sure with this disease the $ will get spent anyway)
but I am in tx for babs, so after what everyone says I wonder..... but I keep getting a feeling that it is a good idea for me
any studies on babs specifically?
jif (the other julia)
Posts: 208 | From Santa Fe | Registered: May 2006
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Julia~ I have PM you some about HBOT in the recent past. We do not have a chamber in my town, and may consider trying to get one here. In the meantime, I am seriously considering driving 2 1/2 hours one way to the nearest chamber to begin some dives.
Do you think that once or twice a week would be helpful at all? It would be difficult to make that kind of drive more often.
If I see that I get a significant herx from it (as I do from antibiotics) then I will work hard to get a chamber in my hometown.
Thoughts? Thanks....Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Julia in Santa Fe--that is Dr. Stoller's clinic? That's a good chamber. There are also mild chambers in town as well. You could experiment with both and see what works (even though clinic chamber owners will tell you mild ones don't work for lyme.
To the other person, once or twice a week is not sufficient in the beginning. You really need a heavy duty schedule to really knock back the lyme. I personally think 90 minutes once a day 5 days a week (with an air break for 5 minutes at 45 minutes during the dive to take a break from the oxygen) is the most economical and most effective.
But the point is this has to be longterm. Julia has her own chamber, trained how to use it (these are not safe unless you know how to safely operate them), fireproofed her room, has oxygen tanks that get refilled etc. She did this for a good long time while on IM bicillin (which was very smart imo).
I have my own portable chamber which I use once a week these days unless I need more (for example before and after a dental procedure). In retrospect if I'd known then what I know now I would do 3 months of clinic dives and then switch to twice a week with a home chamber and continue with that home chamber once a week as I am doing. Unfortunately it took a lot of trial and error and so there was a long period between my clinic dives as I slowly relapsed.
It is unfortunate how little hyperbaric is used where it could help so much. As in strokes for instance, people should be put in the chamber immediately.
I do not think babs is a contraindication in most folks, although probably in some. If that is a concern you might ask to be put on malarone, or another antimalarial, while treating.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi oxygenbabe~ I was thinking last night in bed that I could make four dives a week possible if I drove the 2 1/2 hours in the afternoon of one day, did a dive then, spent the night, did a dive the next morning, drove home...then repeated the scenario later in the week. That might work. I do want to get well, and with the C. diff on board I can't do more than the one shot of bicillin weekly that I am already doing.
Then I would work like heck to get a chamber in my home town. If I can't get a place to house one, then I'd look at putting one in my home.
Julia, could you either post back here or PM message me about fireproofing the home? Does your husband administer your treatments to you when you need them?
Thanks so much....Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Timaca, you can treat c. dificile colitis by adding in VSL#3 after a course of vancomycin...get Kelly Karpa's book BACTERIA FOR BREAKFAST, that is how she cured her son's resistant c. dificile colitis.
Timaca, if you can handle that, that is a good idea. Remember, you should do about 3 months minimum. 20 dives is imo USELESS.
Then you must continue at least twice a week.
I like the mild chamber but I am very responsive to hyperbaric. It is about $10-20,000 depending. You an PM me if you get to the point where you want to consider buying one.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
oxygenbabe~ I will PM you soon....too tired right now.
Due to my extended C. diff, (since December)I have been working with one of the C. diff experts in the country to try to clear it. We are currently trying a pulse off the oral vanco...2 days on at 250 mg tid, and then slowing increasing the number of days off. I am up to 3 days off, which is a first for me. Last time I did the 3 days off, the C. diff came back. So, for now, I am slightly hopeful.
I am on one shot of bicillin while trying to clear the C. diff, but it is not enough to keep the lyme in check, hence the desire to do HBOT.
What the heck is VSL#3???
Would you mind PM me about your story with lyme briefly, and how HBOT played a role?
Perhaps you could explain here as well the difference between a regular chamber and the mild one you use.
Thanks....Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
I have done the HBOT (Dr Fife protocol) and have done maintance dives for the last 1.5yr. I also have Babs, I had no complications with it.
The HBOT clinic in CA says it is OK to do HBO with Babs. But everyone is different. It has helped alot but is not a cure. HBO does help the quality of life.
There is a place in Houston where I go and it is covered by United Health Care. If anyone is interested PM me.
Posts: 315 | From USA | Registered: May 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Timaca, VSL#3 is an extra strength probiotic with 450 million or billion, Ican't remember, anyway, a huge amount of probiotics. Go to amazon.com and buy Kelly Karpa's BACTERIA FOR BREAKFAST. You can google VSL#3, as well. YOu should be taken it in between the vancoymycin pulsing.
Clinic chambers generally treat lyme at 2.4 ata, which is a woundcare protocol (for osteomyletis for eexample). There is no proof this is the correct ata for lyme, but anyway, that is the equivalent of about 50 feet in scuba diving terms, and theoretically can push as muchas 2000% more oxygen into the tissues, although it islikely different tissues absorb it at different rates.
Mild home portable chambers treat at 1.3 ata, which is the equivalent of about 11 feet scuba diving. Theoretically about 200% more oxygen gets into the tissues.
Since most people cannot do what Julia did, and train in hyperbaric as a technician, buy their own chamber and fireproof their home--the best of both worlds imo would be to do 3-4 months at a clinic and follow up by purchasing a home chamber, or if the clinic is near your home, do regular maintenance treatments.
Some people respond very well to hyperbaric, but not all do.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Littlesprout~ Thanks for your input. What exactly is Dr. Fife's protocol for hyperbaric for lyme?
I spoke with a woman at a HBOT clinic in NY at the suggestion of my LLMD. Her recommendation was to do 40-60 treatments at 2.4 depth for either 60 minutes or 45 minutes/break/45 minutes. If 2 dives are done during a day at least 4 hours must lapse between dives.
I didn't ask her about babs. Or any specific labs. One study at Mt Vernon hospital looks like they measure the tumor necrosis factor. Julia, have you heard of this?
Littlesprout~ What do you mean by maintenance dives? How often? How well are you now compared to where you were?
oxygenbabe~ THanks for explaining about the probiotic. I appreciate that. I do take several different probiotics a couple of hours after the vanco. Today I start my 4 days off the vanco. WE'll see how it goes!! I am hopeful that I will be able to do it.
How often do you treat yourself now at home? How much better are you now then before? Do you have a website for your home chamber--where you bought it?
Thanks for everyone's help. I am going to start this sometime next month, I hope.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
>I spoke with a woman at a HBOT clinic in NY at the suggestion of my LLMD. Her recommendation was to do 40-60 treatments at 2.4 depth for either 60 minutes or 45 minutes/break/45 minutes. If 2 dives are done during a day at least 4 hours must lapse between dives.
That is pretty much the normal session. However the two hour session 45/5/45 would have to bring you to either air for five minutes or below 2.0 atmospheres.
I didn't ask her about babs. Or any specific labs. One study at Mt Vernon hospital looks like they measure the tumor necrosis factor. Julia, have you heard of this?
I do not know of this but I did speak with one of their staff in a recent annual meeting. And they did not have anything planned as far as Lyme or neurological on their future studies list...
Hope this helps,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
| IP: Logged |
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Well that's going to be a waste of $ imo. 40 sessions will make you feel better and you will slowly relapse. Its not enough. As I said, those who do best do 3-4 or even 6 months...
And twice a day is not that good for the body. You raise the partial pressure in your blood vessels twice and this is a stress on the body. I think a ninety minute session, breathing 5 minutes of air halfway through, is fine and good.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
posted
Jay, I went to probably the same HBO center you are considering in San Diego. I went thinking 20 sessions would do it, before I started abx. It made me really sick -- herx -- definitely killing spirochetes. But it was a waste of $4000. PM me if you have any questions or want to talk.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
oxygenbabe~ When you state that people do best if they are treated for 3-6 months, do you mean the once a day treatment (90 minutes with a break) for 3-6 months (5 days a week)? Is that what you did?
Julia~ Thanks for your info and the link to the Fife protocol.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
That's what people did at Great Barrington--once a day for 90 minutes--one did 3-4 months, and then twice a week for the whole year; another did 6 months. Those people did very well.
I feel from personal experience--one month--or two--20 or 40 sessions--won't last.
You need longer.And then maintenance for a while.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
oxygenbabe~ Thanks for explaining. What is Great Barrington? And did the person who did 6 months do it once a day for 6 months and then also did maintenance (like 2x week for a year?)
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[hi]](graemlins/hi.gif)
![[Wink]](wink.gif)
Printer-friendly view of this topic