I was told to go and have some hyperbaric chamber treatments by my dr. I am a little scared to go into these chambers since I was told that the ringing can get worse. since I have been on amox 500mg three times a day my ringing has gotten worse. any suggestions??
Posted by robi (Member # 5547) on :
is 500mg amox 3 times a day your lyme tratment?
Posted by WildCondor (Member # 434) on :
Hyperbaric Oxygen, when done correctly, can be a great adjunctive therapy during Lyme disease treatment. Why are you only taking 1,500 of Amoxicillin daily? We need more information. If you click on the search button and type in HBO, or HBOT you should come up with a ton of old posts on the subject. I did HBO during IV and oral antibiotic therapy and it was an enormous help to me. Please do not be fearful of the chamber, it's not bad at all, you can sleep in there. Contact me if you'd like to talk about it, best of luck. Posted by serendipity (Member # 8474) on :
Hi, Last spring I did a four month course of mild HBOT, two or three sessions a week. I felt the effects immediately, I would leave the session with more energy and a little brighter. After the first session I felt well enough to go grocercy shopping. I also did not experience herxheimer reactions, from the HBOT or other treatments, just improvement. The HBOT perhaps was mild in that it gave my body support but did not produce massive die off.
The treatment was calming, I would usually fall into a deep sleep that seemed to last hours. I welcomed this as I rarely have deep sleep.
If I could afford another course of mild HBOT I would certainly do it. I haven't had medical grade HBOT and can't make a comparison.
Posted by Ladylee210 (Member # 9945) on :
I believe in HBO treatments.
I did my first round of 21 treatments over a course of 2 weeks without any meds.
After 3 months of feeling like I was gonna die - I went into a 95% remisssion and have remained there. (that was in 1997).
In between I did treatments again (5) and then maybe 2 or 3 more.
I'm back doing them again right now (yeast) as it is good for that as well.
The 21 treatments in a row are very hard - and you herx extremely hard, I wouldn't do it like that again, I much rather take it slow over - 5 treatments maybe and then back off for a couple of months....less herxing!
Posted by serendipity (Member # 8474) on :
Ladylee, That is useful information. From what I have read, most people relapse after HBOT so it does not seem cost effective.
You have sustained gains for over a decade. I did about 40 treatments of mild hyperbaric and improved, oh it so hard to put a number on it, I improved.
If I can get the money I would like to do another shorter course of mild hyperbaric. Thank you.
Posted by Ladylee210 (Member # 9945) on :
Serendipity...
Yes it's been that long since I had any lyme symptoms, I didn't have meds at the time because I chose NOT to take anymore. My doc's didn't like it but the meds were no longer making me progress, I just quit everything.
Little did I know right behind all of that would be the road that lead me to systemic yeast!
So once I herxed like He!! from the chamber for 3 months I suddenly started to realize that FOOD was making me sick (during the 3 months I barely ate) so introducing things into my system was very well felt.
I thought how the heck could I feel sick over food? Well it was onto the DIET and diflucan / nystatin - mega doses of acid. and within a 6 month period I was WELL 95%.
I say that because yeast and lyme are both a "life time thing" so saying 100% doesn't feel right.
I went from being bed ridden for almost 8 yrs - 4 times almost dying (as I believe it to be) IV's and orals up the waszo - to completely stopping all meds for lyme one day and placed it all in God's Hands.
I'm here - LOL - Got my life back - went on to raise my children all by myself and actually remember them and there yrs growing up ( I lost my memory completely at the start ) I was able to enter the working world and even went to school.
The Lyme/Yeast path ever so similar - however so different as well. I can tell which is which now. I'm programed to listen to my body, and going Thu the 2 if you listen you can tell the difference. And Trust me the yeast thing is harder in a sense.
HBO helps both (altho I didn't believe it in the beginning) but it is also why I believe I herxed so bad doing the first round of treatments, I was full of yeast and didn't know a thing about it.
I'm back doing treatments (I have had 2) I just had surgery so soon I'm gonna do more, it more for maintenance and also lately I have been yeasty (stupid me let up paying attention to ingredients in some things I ate over the past yr).
So here I am - I found this place one night and WOW I can not believe all the wonderful people here and all the help and Info that is in here.
I especially love the little guys at the left hand side of this screen!
By the way how does one work those guys?
PS - My 1st round of treatments were around 100 each -(Maryland) - (multi) - the other was PA 110.00 ( single) - and now in NJ for 55.00. (single) How much are your treatments?
Posted by Jill E. (Member # 9121) on :
Can the people who've had success with HBOT post what the atmospheres or strength or however it's measured of each dive is?
I've heard various opinions, that Lyme patients need different pressures than HBO used for some other diseases.
On the CaliforniaLyme board, there has been some discussion that people with Babesia should not do HBOT until the Babesia is treated because oxygen encourages its growth.
Do any of you have experience with that?
I spoke to a Lyme patient who used HBOT at a clinic in my city and had fabulous results, so I'm interested.
Did anyone have problems with pressure in the ears? My eustachian tubes are already clogged, I already feel like I'm in an airplane all the time - that worries me about HBOT.
Thanks, Jill
Posted by serendipity (Member # 8474) on :
Welcome ladylee, This is a special place. Such kind people, smart researchers, and passionate advoctes.
Now the important thing, the little smily faces. Simply go to the place in the text you would like a face and click onit .
I did not herx really at all from the hyperaric, perhaps because the sessions were short, it was mild not medical grade unit, and operated at low pressures. I paid $50 a session. The clinic was kind and gave me about 10 sessions for free.
You got a great deal for medical grade hyperbaric, from my research a year ago most sessions run about $200 dollars.
Money is such a critical factor in this disease. As I'm not working I can't afford another series. And yet I can not afford to stay ill and be on disability for much longer, so more intensive therapy would be in order.
Another concern about HBOT is babesia as Jill pointed out. I do wonder if it encourged Babesia growth, as I was on treatment for lyme, bartonella and babesia while doing the HBOT. My lyme and bartonella levels were greatly reduced, babesia has been a problem that I am still struggling with. I would be interested in others experience who had HBOT and babesia.
Diet has been critical in my healing. Since I didn't do antibiotics I was not overaly concerned about yeast, and enjoyed the occassional brownie or ice cream. Honestly, a frequent treat.
Recently I had a fungal infection in my lungs. The herxheimer from the antifungal was horrendous, worse than any from a lyme treatment. Since then I have gone on a low carb-gluten and casein free diet. Amd continued an antifungal herb and rife treatment for aspergillus fungi.
Juicing for the last month has helped me gain weight and increased my energy. My digestive system was weak due to many factors including poor HCL and digestive enzymes.So I juice three glasses of green vegetables a day (mostly leafy).
If I don't stop, someone will come by and arrest me for hijacking this thread. So lets continue on HBOT and talk about diet somewhere else. There are many old posts on the subject if you search. If you have new tips, information, or would just like to discuss you experience with healing and food start a new thread.
Posted by Ladylee210 (Member # 9945) on :
Hi Jill...
Yes your ears "pop" but you release them buy yawning and also I was just taught a trick (when I reach certain pressure my ears will not pop momentarely) I was told to hold my nose and blow out my mouth - pop it's open.
I too had problems with my ears prior to treatments - if your ears are clogged now - they will clog a little more inside the chamber but you will feel the difference - enough to get you back to the clogged ear feeling that you already feel (if that makes sense).
My first round - for some reason (multi chamber) I believe we dove 70 feet - 1 hour.
My second set of 5 - (single chamber) it was and is 45 feet - 1 hour.
I know the 45 feet is standard protcol for Lyme patients in single chambers (1 hour).
The 70 feet If I'm thinking right might have had something to do with the amount of people I dove with (5 others). I could be wrong however, it was long ago.
Posted by Ladylee210 (Member # 9945) on :
Serendipity,
Do you remember what pressure you went to and for how long each session?
For everyone else do a search in here on HBO - that's how I found Julia right here in my state of NJ - she offers HBO treatments at a lower cost knowing that us Lymies are broke.
OHHHH I did it.... Posted by Ladylee210 (Member # 9945) on :
Serendipity and Jill,
I'm sorry I do not know much about Babs and HBO treatments.
I never had Bab's but I'm reading in here that alot of people seem to have both (as I have heard in the past that one can have).
Posted by terrirdls1 (Member # 9810) on :
Hi everybody, sorry it took a while for me to get back. I am taking amox 500mg three times a day and should work up to 2 cap of the 500mg three times a day Dr. also prescribed clindomycin 150mg two times a day and work up to 2 cap two times a day with 100mg of artimesinin a day. This is my treatment for lyme. Yes, I have stiff neck and also plugged ears and aching shoulders with the Tinnitus and Dizziness. I had such a hard time going to grocerystores because of the dizzy spells. Dr. said it could be that there is just to much going on that my lyme brain can not put in the right place or egnore other things and takes everything in. I think she is right. I feel the HBO treatment will do me a world of good and hope and pray for the herx and the Tinnitus not to flare up. The cheapest place I found was 1 hour and 30 minutes away from my home and it ran $70. for hour. The medical grade hard shell HBO costs $200 an hour and that is only 20 minutes away. But with all the antibiotic treatments that I have to pay out of my pocket and the lyme test which cost me $995 since kaiser permenente does not cover anything with lyme. There western blot test came back negative. IGeneX said a definite positive since there were 5 band infected. The IGM was positive and the IGG was negative could not find babesia but dr. feels I have it since I have such bad dizzy spells and weakness. I dont know. Thank everyone for writing and giving such good encouragment. I get so depressed ready only negative so great job and keep up the good work and good health. Posted by serendipity (Member # 8474) on :
Ladylee, I have on my list of things to do, ask the clinic what pressure the treatmens were at (in ATA). The sessions were only sixty minutes, which is short and may have been in part why I did not herx.
I met Julia on another forum yahoo lymetopics. A group of lyme patients discussing alternative treatments for lyme. lymetopics
Travelling to NJ would be expensive though. I'd like to find someone in the DFW area other than the clinic I went to before.
Jill- I did have a popping in my ear but it was mild. I would not do sessions at the moment as I have a sinus infection and fluid in my ear canals.
Posted by serendipity (Member # 8474) on :
Terri, Misery loves company, and also to reassure you, my herxes from artemisinin gave me horrendous dizziness and vertigo.
The room would spin. I never had this before. I also had neck stiffness, headaches, and pressure in my head. That was two months ago. I am still on artemisinin and feel quite good. My energy level is better, blurry vision is improving, ...just overall better. So hang in there.
There was one night were I did not think I would make it. The ER was not an option as I don't have good insurance. Thankfully my LLMD called me back, and reminded me how much progress I had made.
There is some question about HBOT excerbating Babesia, you may want to do some reasearch and ask your doctor.
Posted by Jill E. (Member # 9121) on :
Thanks everyone for letting me jump in on Terri's question and ask so many questions of my own. This is a really helpful thread.
The HBOT clinic I had looked into, which has treated some Lyme patients, has an informative website at www.hboinfo.com - and there is a link for Lyme Disease.
I just looked at it and it's been updated quite a bit. I spoke by phone several times to one of the patients featured there.
I noticed the website now talks about the hard-sided versus soft-sided HBO units - I guess this is the medical grade versus mild HBO. I'll have to go back and read it again.
I know I can't afford this and out-of-pocket payments for Bicillin right now but it's intriguing.
I'm particularly interested in whether this would help Bartonella because I can't tolerate any of the Bartonella medications right now. It sounds from some of your posts that Bartonella does improve.
Take care, Jill
Posted by serendipity (Member # 8474) on :
Here are the other reason I did not pursue another course of HBOT. Bryan Rosner is a proponent of rife, so he has biases as we all do, but also has done a tremendous amount of reserach.
From "Lyme Disease and Rife Machines" by Bryan Rosner "If HBOC were a cure these inconviences might be justifiable, but HBOC users often find themselves spending thousands of dollars and getting treated for as long as 6 months only to relapse upon cessation of therapy." pg 25 (Ladylee, your experiene helped with this concern)
"An additional disadvantage to the HBOC is that some researchers beolieve it drives the infection deeper. There is significant evidence that HBOC may even worse than antibiotics in this regard." pg. 25
" One homeopthic Lyme Disease practioner notes that patients who have previously used HBOC are much more difficult to treat and may not recover to the extent that other patients do." pg 26
Posted by JeffM (Member # 8919) on :
No I did not.
It was a huge waste of money.
Posted by timaca (Member # 6911) on :
I am currently in the middle of HBOT. I have completed 12 dives out of the 40 that I hope to do.
The "dive" consists of 10 minutes of "descending" to 2.4 ATA (about 45 ft below sea level). We spend 45 minutes at this depth, breathing 100% oxygen that is given to us by a hood that is placed over our entire head.
At the end of 45 minutes, we take the hood off and breathe chamber air for 10 minutes (which is regular air) to prevent oxygen toxicity.
Then, the hood goes back on and we breathe 100% oxygen again for 45 minutes.
We then "ascend" for 10 minutes.
We clear our ears on the way down. There is an attendant in the chamber with us. It is a multi-person chamber.
The cost of each dive is $125.
Both my friend and I experienced a herx. Mine came on day 12. I had chills, headache, right knee pain, and felt awful, and couldn't move. I was decently fine the day before and after that day.
It is uncanny that I get hit with my herx on day 10, 11 or 12 with antibiotics, and now the HBOT. So, I KNOW it is doing something.
My friend's lyme symptoms tend to increase after each dive...sore throat, hive like rash, etc.
I am hoping that it helps us. I am on IM bicillin, my friend is on minocycline.
Timaca ps...if you do a google search on chico hyperbaric oxygen therapy, you will get a good link.
Posted by national catastrophe (Member # 10011) on :
Doesn't Bryan sell Rife equipment or have a Rife group? That might explain why he's anti HBOT.
I've done HBOT, got temporarily better, though not completely and believe in it.
Posted by serendipity (Member # 8474) on :
Hi National, Bryan doesn't sell rife equipement. He used rife to get better and is in remission, after using numerous other modalities. He has a book on rife and moderates a yahoo group on lyme and rife.
His argument is that hyperbaric will get you better *temporarily* and therfore is not worth the cost. In addition is may drive the bacteria into cyst form.
I improved from hyperbaric and am would do another series if cost were not a factor and the concern about driving bacteria into cyst was not a concern.
Posted by Ladylee210 (Member # 9945) on :
Hi Timaca,
I'm a little confused...
Are you in the chamber for 90 min. total?
You say you dive to 45 feet - 45 min with hood on and then you take it off and do another 45 min before you come up?
My experieince with doing treatments of that amount (all together back to back) was and could be very hard on your body.
The extreme bed ridden herxing came after the 21 treatments I had (over a 2 week course) the herxing started on the 14th day and lasted up to 3 months for me. But I did end up in remission after that.
So please be prepared.
I was on no meds at the time but still felt the herx from day one in the chamber and thru out the treatments.
Posted by Ladylee210 (Member # 9945) on :
serendipity...
After that course of treatments (the 21) I did go into remission from Lyme (1997) and believe today that I still am, is it a cure NO, as I do believe there really is no cure (in my case anyhow) being I had it for so long and considering I had stage 3 Lyme.
Do you relapse? Yes one can - but one can after antibiotic treatment as well.
To me HBO treatments are more along the line of "natural" approach, less damage to the body, compared to what the meds may or may not do to your body.
It has always been my understanding that the oxygen simply saturates the entire body and DOES get into hidden areas, I have never heard of it cause the Lyme to go into a "cyst form".
As a matter of fact when I did those treatments (the first round of 21) I was off meds and was symptom free for many months prior, yet on the first dive I herxed right away, which lead me to believe that the little buggers were in remission and or hiding still within my body and the chamber simply brought them out to surface.
The extreme herxing during/after the treatments and onto thru 3 months later was of course stemming from those little buggers that were hiding within me (deep in the cells).
It also included the herxing from the systemic yeast. Hense double time herxing.
Posted by Ladylee210 (Member # 9945) on :
Jeff...
How many treatmnets did you do and what kind - mulit or single, and what was the cost?
Posted by oxygenbabe (Member # 5831) on :
I've done both clinic and home (mild portable). Both are effective. Clinic is stronger, obviously. The problem with clinic is it's usually so expensive you can't do enough to get into remission. A month is not enough. I've seen people improve, but relapse; improve and stay improved (usually after longer term treatment); and a few not respond very well at all. Of course that may have beena herx and they may have abandoned it; OR maybe it was feeding some other organism. I've seen this on antibiotics and without any antibiotics. I guess its individual. The speculation about cyst is pure speculation. There is all kinds of speculationa about what drives borrelia into cyst form, including antibiotics. Nobody knows as nobody has watched it in the body. Bryan got better doing rife and the marshall protocol; whereas he has posted that salt and vitamin c made him very ill. Marc his friend got better doing salt and vitamin c. Everybody's individual.
Posted by timaca (Member # 6911) on :
ladylee~ I am in the chamber for about 120 minutes total. 10 minutes descending. 45 minutes breathing 100% oxygen. 10 minute break breathing chamber air while still at 2.4 ATA. Then 45 minutes breathing 100% oxygen again. Then 10 minutes ascending. So, it's 90 minutes breathing oxygen with a 10 minute break to prevent oxygen toxicity.
My friend seems like you in her response...she gets reactions shortly after leaving the chamber.
I do one dive a day, 4 dives a week. The chamber is out of town (2 hours away) so I end up spending the night twice a week out of town.
I decided to do HBOT, for I've been battling C. difficile since December, and cannot take oral antibiotics at the moment. I had been on IV rocephin for 6 1/2 months, which helped a great deal. The bicillin I'm on wasn't enough to hold back the lyme, hence a reason to try HBOT.
Timaca
Posted by Ladylee210 (Member # 9945) on :
timaca,
ahhhh that is what is called doing 1 1/2 hour treatments in one shot.
I have done that in single chambers.
Are you yeasty? Is that why you can not take meds?
I had CDiff after treatment of Iv Rocephin (1990's) Vancomycin is what worked for me.
What state are you in?
Posted by timaca (Member # 6911) on :
Ladylee~ I live in AZ (a state that isn't supposed to have lyme )
I have been on LOTS of vanco for the C. diff. In fact that is all that I've taken since December for it. At one point I was on 500 mg tid for 28 days, and it STILL came back.
What seems to have worked is a pulsing schedule...2 days on the vanco, 1 day off. Do that for awhile, then make it 2 days off, then 3 days off, etc. I've just completed 9 days off. I've stopped the vanco, and hopefully, it won't come back. It has been a really long haul.
My LLMD has told me I am his patient that has had C. diff the longest. Not a distinction to be coveted!!
I'm not taking oral antibiotics due to the C. difficile. When I am free and clear of that for some time, we will add some oral antibiotics in and hope and pray the C. diff doesn't come back!
Timaca
Posted by BOEJR (Member # 1734) on :
Hello to all,
I am sorry that I missed this conversation as I have been pretty busy here with my lymies : )
I still offer the sessions affordably and I am hoping that I will be able to get the approval for a second chamber I don't really make enough to justify a second chamber but I have seen such great benefits in my clients that it's all worth it to me.
I have noted the following for those that question remission or no improvement with HBOT. I have noticed that those individuals that are heavy metal toxic or have high viral loads tend to be resistant to recovery. Otherwise I have seen great results.
Is it a cure NO, but it is a great adjunctive therapy that will put you on a path to recovery IMHO
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