- This topic has 18 replies, 8 voices, and was last updated 15 years, 11 months ago by
.
-
Posts
-
My daughter and I are going to be doing this treatment this summer. Anyone else tried this? It is suppose to be very effective and killing anearobic infections, lyme, mycoplasma, etc. The doc said some people herx.
K
Hi Kathy,
Yes, just spoke with a mother (of a young 11 year old son with JRA and Lyme) and they tried this treatment last year. I met her at a book signing for Pam Weintraub's new book, “Cure Unknown – Inside the Lyme Epidemic.” She said her son herxed significantly after treatments.
Please let us know how you and your daughter get on with the treatment. Certainly can't hurt and, if it helps, that's wonderful!!! 😀
Peace, Maz
Do you know yet how often you will be doing this? I've been thinking about doing it here in Costa Rica since it's cheap and I can't find an AP doc. Any info or references you can provide would be greatly appreciated.
The HBOT I will be using is a large tank where the operator pressurizes the tank with normal air and one breaths through an oxygen mask. This accommodates several people at a time. I'm wondering if that is as effective as the personal tank (cylinder where you lie down) that, I believe, is filled with oxygen and one breathes it directly from the tank. Do you know anything about that, or does anyone else?
I looked into HBOT significantly a few months ago. Jess even had a preliminary consult appointment with the HBOT specialist doctor and the team. This was at University of California, San Diego. They developed a treatment plan and submitted it to the insurance company, it was never approved so we did not proceed. They have the large chamber where 8 – 10 patients go in at once, and sit in chairs.
The plan was:
10 Treatments, one per day, five days per week for two weeks prior to the scheduled surgery.
20 Treatments, one per day, five days per week, for four weeks beginning immediately after the surgery.
Each treatment was said to take about three hours total, with set up prep etc.
The cost was to be about $1,000 per session. So you can see that when the insurance declined the pre-approval, we decided that we could not do it.
From all I have read, I do believe that this is a potentially valuable complementary treatment, but it is very costly and time consuming.
We were looking into it as a part of the re-do surgery for Jess' broken arm that did not heal. I wanted to do everything possible to ensure that the bone would heal this time. If you have read my other posts, it turns out that this would have been a waste of time and money, the bone was nearly fully healed within a week. The first surgery was done improperly, so, once done correctly, the bone healed quickly.
Good luck with your HBOT treatments. There are other oxygen therapies that are available and may accomplish the same results, i.e. herxing may result. I recommend a Google search, there is much information available on the anti-microbial benefits of various oxygen therapies.
Cheryl
Thanks for your response. I'm glad to hear your daughter didn't need to do it, especially considering the cost. I don't understand insurance companies who will pass up good therapy and cover more costly and invasive procedures.
The guy here in Costa Rica who does the HBOT charges $25 per hour. Plus, medical care here is much less expensive and just as good as in the U.S. In fact, it's my understanding that it's rated higher than the U.S. by the WHO (World Health Organization, not the rock group). lol
Unfortunately, even at that low cost, I can't afford to do it for the number of hours you mentioned. I plan to budget at least a few hours a week, though, and see if it helps with my RA. I understand that it's also used for macular degeneration, which I also have and which has been attributed by my doctor to the use of plaquenil. That's a bummer.
[user=175]artzystuf[/user] wrote:
I don't understand insurance companies who will pass up good therapy and cover more costly and invasive procedures.
Hi Artzystuf….some light is being shed on this question as it pertains to the Lyme world and, although I don't want to make a blanket assertion that all medical societies operate in the same way, it's clear that medical societies are not being monitored by outside agencies for their medical proclamations. However, these proclamations are taken on by the fields to which they pertain as being the “gold standards” for treatment and to err from these guidelines could lead to litigation and physican license removal. In effect, medical society guidelines can tie the hands of physicians when it comes to individualizing treatment and stepping outside the parameters of any medical guidelines for treatment.
For patients who wish to seek out alternatives, therefore, they wind up not getting insurance approval for their chosen treatment either. This is because insurance companies tend to take “acceptable treatment guidelines” from these same medical societies that pronounce them, based upon selected studies chosen by a few within the society (along with current FDA approved medications who in turn rely on the integrity of feedback from pharmaceuticals regarding drug safety).
However, it's recently been uncovered by the CT Attorney General that in the case of the “Infectious Disease Society of America” that the panels of physicians selected by these societies are not above having their own personal “conflicts of interest.” In the case of the IDSA Lyme treatment guideline panelists, this included things such as personal investments/interests in Lyme vaccines, as well as some studies having been conducted by the authors of the guidelines, themselves. What this means is that the panelists 'selectively' chose studies that backed their claims that chronic Lyme doesn't exist and that longterm antibiotic therapy is “dangerous” when there were many researchers and studies available that contradicted this assertion. This pleases the pharmaceutical companies that fund these research studies, because the vaccine they are intending to produce (in this case, the Lyme vaccines) then has a potentially open, lucrative market on which to feed.
There are so many feedback loops in this whole “game” that it becomes almost impossible to define where it all began. However, one thing seems clear in most recent case of the IDSA's misdeeds….ego and personal interests were very much intertwined with the Lyme treatment guidelines that insurance companies currently follow as the gold standard.
Hopefully, these latest revelations have exposed the power that medical societies do hold and the need to have independent monitoring of their activities.
Peace, Maz
Well, I can give you some feedback. Maybe not the feedback you are looking for though.
My husband did HBOT about two years ago. This was before he was diagnosed with Lyme disease and he hadn't had any antibiotics. He had had quite a bit of prednisone though and a bronchoscopy had revealed candida in his lungs. He had started a gluten free diet and diflucan for the yeast. All of a sudden everything started turning around. I thought wow maybe this nightmare will end if we get rid of the yeast. So my husband did I believe 10 hyperbaric sessions. Well, the man that weekly was making great improvement went into an awful flare.
You cannot imagine the feelings of guilt I went through watching his movements all become more and more painful and hearing his breathing get worse and worse. There aren't enough tears or words to describe the personal hell I inadvertently created for myself.
I can't blame everything on the HBOT. At the same time, he was weaning rather aggresively from the prednisone and he had had a pneumonia shot a few weeks prior which also aggravated him some. Also, he was on a strict yeast free diet which may have caused yeast die off reactions. I don't really know.
For some people, HBOT works great but for others it really brings out more problems. I think now that maybe if he had had antibiotic treatment it would have brought his germ level down and he might not have had such a die off reaction. Also, some people seem to think that if you have babesia (they're pretty sure my husband has that) that it feeds off the oxygen.
Funny thing is last year the ulcers in my husband's fingers got so bad that the wound care doctor actually offered my husband HBOT and insurance would have paid! My husband said no way, no how. (By the way a year later and we made it through winter with no ulcers.
Wish I could give you a positive experience. However, there are others out there at Lymenet who swear by it.
Thanks for relating your husband's experiences. It's definitely worth considering. I'm just looking for something to work, and nothing has so far. I'm on Arava and 20 mg of Prednisone per day. Haven't been able to decrease the Pred even to 17.5 mg without experiencing pretty intense pain. I'm not on AP right now because no one will prescribe it for me, or I should say I haven't found a doc here who will. Not sure I could afford it anyway since I have no health insurance here. I take Tylenol with codeine (generic) to help with the pain, and I have a lot more bad days than good lately, so I'm frustrated. Besides, my liver is starting to go downhill, so I'm getting desperate for something that will allow me to get off the lethal drugs.
I can understand your desperation and the feeling that HBOT might be the nontoxic way to go about it. That was one of the reasons we tried HBOT. It seemed so innocuous and truly some people do seem to get wonderful benefits. It's also expensive. It cost us over $2,000 I believe. We could have bought alot of antibiotics for that amount.
Keep posting and maybe someone in your area will be able to connect you with someone who can treat you. Are you sure you don't have some acne that could use some minocin treatment? Sometimes you have to be creative and think out of the box. Unfortunately at a time when you have the least amount of energy.
As far as your liver, look into taking n acetyl cysteine and milk thistle. Also, the lemon/oil drink is supposed to be good for the liver.
I didn't realize you were in Costa Rica. Can you get antibiotics mailed to you from Canada?
How would I find a doc to write a prescription in Canada for me? I'm not sure how that works. Do you have any idea how much they cost in Canada? I think there would be no trouble getting them mailed here, since I could have meds mailed from the U.S., up to 90-days worth at a time.
As for the cost of HBOT, I can get it for $25 per hour here. Even at that, I can't afford to do it too often.
[user=175]artzystuf[/user] wrote:
I take Tylenol with codeine (generic) to help with the pain, and I have a lot more bad days than good lately, so I'm frustrated. Besides, my liver is starting to go downhill, so I'm getting desperate for something that will allow me to get off the lethal drugs.
The toxic part for the liver is the Tylenol. You can get straight codeine, or better yet straight oxycodone without the tylenol for pain. My wife took 5mg oxycodone capsules and it helped a lot when she was in pain. (Note: that is NOT Vicodan or Percoset, both of which contain Tylenol). Straight oxycodone is not harmful to the liver.
Joe
Joe, thanks for the information about Tylenol. I never did like taking it but I'm not supposed to take Advil or anything like that. I'll see if I can get codeine without prescription, or even oxycodone. But aren't they both habit forming?
Hi artsy,
Just some things to start that don't cost you much extra and may help significantly with your pain.
Food. What do you eat? Food can cause inflammation in the body. Specifically, foods high in Omega 6. That would include meat and a lot of the plant oils like canola, soybean, corn. Olive Oil contains Omega 3 and can actually help reduce inflammation as can Tumeric, Quercitin, etc. Whole fruits and vegetables that are not covered in sauces are very safe to eat.
Stay away from highly processed foods and sugary foods. Diet is critical but is also unique to each of us in many ways. If you are not up on diet, that is a very good place to start.
When I was first diagnosed, I was inflamed in every joint and very much housebound. I found http://www.drmcdougall.com He relates diet to RA and espouses a vegan diet. He said ” If Leaky Gut is your problem, try the vegan diet for 2 weeks. You should see significant improvement”.
I tried the diet and experienced very signigicant improvement. I estimate approximately 50% reduction in swelling. This convinced me that diet was affecting my health. I found a doctor to help me fine tune this. Today, I am no longer vegan but do avoid foods to which I test sensitive.
For some people, change of diet alone is enough to get them out of pain. My RA is too severe for it to be that easy, but diet along with AP has me painfree most days.
Recent relapse has required me to use Enbrel. One shot put me right back to painfree and my doctor promises the Enbrel will only be temporary. After fighting this drug for 2 yrs, I decided to embrace it. We continue to treat antibiotically and alternatively. I choose to think of the Enbrel as holding the immune response down to normal level while we kill the microbes.
Diet continues to be very important.
Susan
Yes, they can be habit forming. BUT there is a big difference between dependence and addiction. Dependence is when your body gets used to the synthetic opiates, and withdrawal symptoms may occur when you stop taking them. Most people who take pain medication as prescribed may develop a physical dependence, but are not addicted.
The signs of addiction include taking more than you are prescribed, running out of your prescription early, supplementing your prescription with street drugs, taking them for the “high” instead of just for pain, etc.
Research has shown that less than 2% of people who take pain medication as prescribed become addicted, although they may develop a physical dependence. When you no longer need it, your doctor will taper you off slowly so as to avoid any withdrawal symptoms.
There is plenty of information about this on the web. There is really no evidence to support withholding pain medication from people who really need it due to fear of addiction. The only time it is advisable not to begin taking opiates (and codeine is a low level opiate) is if you have had a previous addiction to another substance such as alchohol, cocaine, or other street drugs.
Hope this helps.
Joe
The topic ‘ Hyperbaric Oxygen Chamber – HBOT – has anyone tried this?’ is closed to new replies.