posted
I would like to know too as I have been on multiple antibiotics for four months with no improvement whatsoever and I am now considering other things to supplement the meds.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Check out Wild Condor's links. She did this and talks about it on her website:
I copied and pasted a portion of what she said about it below on her website. Also, do a search on the search function as there is more information to be found there.
~I began Hyperbaric Oxygen treatment (HBO) as an adjunctive therapy to my antibiotic protocol. My treatment plan began with a series of 60 treatments in a monoplace (single person) chamber. I did two treatments daily, Monday-Friday at 2.4 atm. The first dive took a little getting used to, but I did really well thanks to my "divers ears."
The chamber was nice and comfortable with a nice mattress to lie on, a pillow and a blanket if I needed it. The chamber was great! I could watch TV, movies, and listen to music in there. You have a hyperbaric technician, a nurse and a doctor all there for you while you do your treatment, so I was not afraid. It takes about 10 minutes to dive to pressure depth, during that time you have to equalize your ears. I found that very simple with the procedure the technicians taught me. Once at pressure, I could sleep the entire time.
The worst of my neurological symptoms came out during this therapy. I had panic attacks, hallucinations, nerve pains, muscle spasms, encephalitis, fevers, flushing, joint swelling, edema, and total exhaustion. I grew too tired to handle it and had to have my Mom come stay with me all the time, feed me and help me with my IV's.
The flushing in my face was so bad it felt like I had a severe sunburn 24-7 and it was not only disgusting to look at, but it hurt and I was so dizzy because all my blood was in my skin. After the initial six weeks of HBO, I went home to lie in bed while the herx cleared (the worst it ever got, or so I thought) hallucinations and anxiety so bad I needed a Xanax pill just to go to the bathroom.
I could not sit at the table to eat. I could not handle lights being on, cars driving by the house, any noises or sounds. Even people talking had me shrieking in pain from my brain. All I did besides sleep was stare at my lava lamp for hours. Those chambers made me herx so hard; I had visible shakes and muscle twitching, rashes and nerve pain during my dives.
Hyperbaric oxygen was a huge factor in my success. I continued with the treatments in the monoplace chamber for over a year. I started with 60 dives, and then did 10-15 treatments each month as maintenance. I infused my IV an hour before each treatment to maximize the effect. I also did hot bath treatments before and after each dive.
Right in the middle of my treatment, I decided to try a different type of oxygen chamber, the multiplace (multi-person) chamber. It was less expensive than the monoplace, and closer to home, so I tried it. I wish I never tried it! My experience in the multiplace chamber was not pleasant.
First of all, I was with other people, and it was very uncomfortable. You have to sit up and wear a mask over your head. The mask kept leaking air out of the neck gasket and deflating on my face. The other patients in the chamber were not instructed how to equalize their ears, and my treatments were interrupted countless times.
You cannot rest, and forget about sleeping, that is impossible in there. I got no help from those treatments; I got no herx, and felt no effect at all. I found out later from my LLMD that in the multiplace chamber, I did not absorb the pressurized oxygen through my skin, which is where spirochetes like to hide. The hood had a design flaw, and it lost its potential effectiveness through air leaks.
Every single one of my multiplace treatments were either delayed, or ruined by other patients who were claustrophobic, could not equalize their ears, or complained about the pressure depth and wanted to stay at 1.7 or 2.0 atm. I needed 2.4! It was very frustrating, and wasted a lot of time and money. Before I knew the facts, I tried another multiplace chamber. This one was a bit different.
There was only one other patient with me who also had Lyme. We dove to 2.4 but it never felt like it. Again, no herxing, no nothing! The mask was better than the hood at the first place, but it still felt "whimpy." It is very frustrating to deal with the lack of individual attention in a multiplace chamber.
Treatments are started and stopped so many times it can take hours just do a single dive. Even though the multiplace chamber says you are at 2.4 atm, it is more like 2.0, and I could feel the difference. I got fed up with the lack of results, and went back to the monoplace chamber.
As soon as I went back into the monoplace chamber, the herxing began. I experienced twitching, nerve pains, and even rashes coming back again on my skin from original tick bites...amazing things! It knocked me down hard, and my herx was so powerful I needed medical intervention to calm it down, and a break from the meds. After two days rest, I continued my dives, and did ninety more.~
If you have more questions feel free to contact her. I'm sure she'll be glad to answer any questions you have about it.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I did HBOT. If you do a search with my member number and HBOT, you should find some posts.
It did help, I did feel better, I did have significant herx like reactions, and I believe it was killing stuff off. I did not maintain the improvements when I stopped the dives. The dives are expensive.
My latest improvements are from adding in antivirals.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
quote:Originally posted by timaca:
My latest improvements are from adding in antivirals.
Best, Timaca
timaca,
What antivirals have you added that you've improved on if you don't mind me asking?
Aside from the current cold I have, I'm feeling the best since becoming ill (almost 7 years ago). I am not well, but doing much, much better. (Much better)
I see my ID doctors this coming week. I'm looking forward to what they have to say.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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MichaelTampa
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Member # 24868
posted
I didn't do HBOT, but I used an oxygen concentrator for 2 hours a day, for about 4-5 months, then tapered off after that. Rentals are like $170/month where I live, so it can be a lot cheaper than HBOT, I think. I started this mostly before I knew I had lyme, but it is good for chronic fatigue like symptoms, and it helped me a lot. It left me just very slightly lightheaded and tired afterwards, not sure if it was herx or something else, but it helped restore energy, if nothing else.
Michael
Posts: 1927 | From se usa | Registered: Mar 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I've done 80 HBO treatments total. I started the first set of 40 treatments in February. I did 2 dives per day in the monoplace chamber 5days per week. I did not herx much with this first set. Took 4wks off then started again.
With the second set of 40 treatments I started herxing right away. I had trouble tolerating the treatments (like vomiting in the chamber...) so my doctor recommended dropping down to one dive per day 5 days per week. I finished 11 wks ago. The herx let up after 3wks.
My doctor say's that it is effective against Lyme but not the coinfections. While treating with the HBO I continued my IV meds, oral meds, and supplements to support the body.
I wish that I could say that I feel significantly better but I can't, at least not yet. I hope that it has cleared my body of the Lyme infection. It seems as if the coinfections have been flaring badly over the past several weeks. I will have to give it more time before I can say for sure what and how it helped me.
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
HBO treatments are very expensive but so it being too sick to work, paying for meds, traveling to doctors, etc...
Posts: 5237 | From here | Registered: Nov 2007
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posted
Michael, just a few questions about the supplemental oxygen you were on. Did you stop because your fatigue symptoms resolved? How many liters were you on? My LLND just prescribed me 5L 2 hrs/day because he thinks I might have carbon monoxide issues and maybe that's why I can't treat for the lyme/babesia. Rentals in my area are $325 a month so I hope it helps!
Thanks, diana
Posts: 857 | From northern california | Registered: Dec 2009
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posted
HBOT really worked for me. I went to Cincinatty Hyperbarics. Scott the tech there was awesome. I felt like I got my brain back for awhile at least .
-------------------- RV Posts: 249 | From Healing in USA | Registered: Mar 2005
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Congratulations IMHisda! I'm glad to hear that you got some improvements with HBOT. When (during or after) did you notice the positive changes? How many treatments did you do? Are you completely well now?
I went to Cincinnati Hyperbarics for my treatments also. I've not seen any improvements from it yet. I'm hoping/believing that it reduced my Lyme load. It definitely caused me to herx.
Unfortunately my confections (Babesia and Bartonella) have been flaring so badly that it is hard for me to see anything else. Still hoping that I'll see some real positive changes once I get the coinfections taken care of.
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WildCondor
Unregistered
posted
Hey all,
The trick is to keep up the HBOT therapy with long term maintenance. You have to go back for atleast 2 treatments every 8 weeks for 1-2 years. If you just stop cold turkey you probably will not see any lasting benefit. I did over 200 of them but the last 60 or so were long term maintenance over 2 years after I started them. It was crucial to keep going back!
What you can do is pulse your Lyme treatment so you are on meds only during the HBOT pulses, and it works great.
Also, dont bother with mild chambers, or multiplace ones, they just do not work the same way monoplace chambers do for Lyme.
HBOT DOES help treat co-infections and worked great for me for babesia as well.
Make sure you do not get ripped off doing these, it should not cost more than $150 per treatment anywhere.
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you WildCondor, I'll have to make arrangements for a few f/u HBO treatments. I looked at the calendar and it has been 14wks since I finished.
My doctor must not understand the need for f/u treatments. He told me to wait at least 12wks then see if I needed it.
Posts: 5237 | From here | Registered: Nov 2007
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
diana,
Just saw your question to me, here. I was also on 5 liters per minute for 2 hours per day. This was before lyme was thought of as my problem, and I ran into a group thinking carbon monoxide poisoning can cause chemical and sensory sensitivities, my main symptoms.
I eventually stopped when I no longer needed it. I use muscle testing, and also stopped feeling a difference. It did improve energy, and cause a lot of funny feelings in my head (perhaps herx), and also resolved sharp shooting pain in left foot (probably bugs were hiding out there).
I actually just started back on it tonight, as I stopped treatment and I am getting worse, so now I need to get back to treatment.
Michael
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MichaelTampa
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Member # 24868
posted
diana,
Regarding prices, the concentrators can be purchased used for about $500. That's what I eventually did. It's a real bargain compared to $325 per month!
Michael
Posts: 1927 | From se usa | Registered: Mar 2010
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WildCondor
Unregistered
posted
Glad to hear it Sammy! Yeah most doctors just do not know unless they have a ton of patients going for HBOT. Make sure to keep up with those follow ups for lasting results! )
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posted
what if you have bad ear symptoms...can you still do this?? I always feel like I have pressure or pain in my ear. My LLMD said he has had a lot of success with his patients doing this and said I will probably need to as well later on in my treatment.
Posts: 618 | From NC | Registered: Oct 2009
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WildCondor
Unregistered
posted
If it is ear symptoms brought on by HBOT you can usually take Sudafed before and during your treatments and it does help. Some people need to get tubes put in the ears for HBOT. You need to know how to properly equalize your ears when you do HBOT. The technicians will go slow until you get used to it. It is a gradual transition. Ears should be checked before and after every dive for safety.
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sammy
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Member # 13952
posted
jwall, I couldn't pop my ears on my own so I chewed gum and that worked for me. No pain or pressure problems. I have to do the same thing for airplane rides. And Sudafed helped too.
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posted
Question for MichaelTampa; Is an oxygen concentrator the same as hyperbaric treatments? Where did you rent it from?
Posts: 3 | From Los Angeles | Registered: Sep 2010
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
dddd,
No, an oxygen concentrator is not the same as hyperbaric oxygen treatments (HBOT). I do not know very much about the HBOT, but my sense is that it is much more powerful than an oxygen concentrator, and it certainly is more expensive.
I think they are similar in that they both work to increase the oxygen concentration in your body.
I was only mentioning oxygen concentrator as a lower-cost alternative. To picture oxygen concentrator, picture a relatively-heavy plastic box the size of a small filing cabinet, that you plug in, and it has a breathing tube hooked into it, where air which is 97% oxygen comes out, and you hook that into your nose or into a mask covering your nose and mouth. I would use it a couple hours a day, laying on the couch, deep breathing. (As a reference, "normal" air these days is anywhere between 8% and 21% oxygen, depending on where you are, it is less in cities, for example.)
When I rented, I rented from Lincare. They specialize in renting oxygen concentrators to those who need them. Most people who use these things need them all the time, they use them because their own breathing apparatus does not work well enough any more. Renting or buying does require a prescription, as they are considered medical treatment.
Michael
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