With my busy schedule diving only 4 days a week didn't seem to keep me at my peak level so I started back to 7 days diving and feel much better. I'm not sure if it's in my head or if I really need the extra O2 while adjusting to so many changes recently. Did I mentioned where my new job is, a hospital so there are extra bugs to contend with that I haven't been around for years.
I think I also forgot to mention I still do a CE to detox once a week.
I'm not a good resource for the gut, I healed mine with a Korean acupuncture Doctor cooking herbs for me for 3 months.
I did have heart issues and went in for an EKG at one point in my first year of treating. I was having SOB and intermittent chest pains. All was negative so I just assume it was the Lyme die off and of corse it resolved.
It's awesome to read all the updates and if you journal you will be shocked when you look back over the year or 2 and see your progress.
I can relate to those getting a glimpse of your old self, it's a great feeling and just know it will be a daily feeling at some point during your journey. I have to watch my video to remember how bad it was and how far I've come. I'm definitely living a normal life, and even doing more than the young kids I work with😍
How did I ever function without O2.
Posts: 233 | From AZ | Registered: Jan 2015
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posted
After a 2 day break and a seeming decrease in PVCs, I did 40 mins in HBOT w/o the mask. About half way through my heart started wigging out again.
Can anyone think of what the mechanism for this would be? Or know of a HBOT specialist who could answer that via a phone consult?
I will be distraught if I can't use my HBOT!
Thank you willbeatthis, for the enzyme recommendation. I just began high-ish dose Vit A for my gut lining (I genetically can't convert beta carotene to A and my A is always low), so after a few weeks I will try your enzymes. I usually only buy Pure Encapsulations or Designs for Health, which should be okay, but yours look good too. I'll try anything!
Posts: 22 | From HI | Registered: Apr 2016
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posted
Some of your posts didn't appear on my monitor before writing the above, so here's more...
I don't take thyroid meds because they make my heart race (even miniscule doses), although my numbers are always a bit low. Plus nodules and borderline Hashi's.
I will look into the Lyme literate doctor referrals for a cardiologist, great idea, though I'm in Hawaii and there used to be no one. My doctors here never believe I have Lyme, despite positive PCR.
I have been thinking about FODMAPS, shouldn't be too difficult given that I haven't tolerated garlic or onions for 17 years!
Thank you all for your ideas, and I will (mostly) stay out of the HBOT until I see the cardiologist.
Posts: 22 | From HI | Registered: Apr 2016
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I deal with pvcs as well but I haven't had them during my dives very often. I do however seem to get them when I feel a level of stress. In fact just typing that and imagining myself in a stressful situation generates a couple PVCs.
I'm not sure what I can say to help other then I do deal with them. As you likely know caffeine is a big trigger along with alcohol and stress. If you have any of this in your system when you dive it might be contributing. The dive may be a form of physical stress.
Have you tried laying in the chamber without pressurizing it but let it inflate and simply lay inside for an hour? I would start with that and if that didn't create any pvcs I would try it while breathing 02 but again don't let the pressure build up. Keep adding things until you find what is triggering them. It may help you find the solution.
Monti
Posts: 120 | From Maine | Registered: May 2015
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posted
That's a terrific idea Monti, I will try that and report back. If I were to guess I'd say its the pressure, but we'll see.
The only real stress in my life is Lyme, but that's so much better with the HBOT. No caffeine, no alcohol, no vices, how boring! I aspire to an occasional glass of wine someday.
Posts: 22 | From HI | Registered: Apr 2016
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posted
Hi Kristine and All: Wow! I knew the experts would come out... You sure got some great directives here and I look forward to hearing how things go. Thank God for Lymenet and the dear souls that stick around to help out always....
You are a trip, Phoiph! I am pretty sure I am still going to think pretty highly of you... it hasn't been a picnic of late but I am a tough, determined soul. So- ONWARD and UPWARD.... Thank YOU for all of your help and guidance
WOW PEIMomma! YOU ROCK! You are just at your two year mark... I think Phoiph still does daily dives (Phoiph) will have to answer this. I am glad you found with daily dives you are back to your best self and maybe it is just this transition time.... you've made a big adjustment and yes, germs, they are plentiful where you are I imagine. I work with students so man, I understand
To bed for now ladies! I look forward to diving tomorrow and will be thinking of you Kristine.... I know you will find the answers you need. HUGS!
Posts: 859 | From Southeast | Registered: Mar 2011
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Kristine...
I am very glad you are being cautious and seeking an opinion from a Lyme Literate cardiologist. Also great to hear you might try the FODMAP diet, and that it has helped kgg
Just thinking out loud here...
I do know there are several kinds of PVCs, and many different factors that can trigger them (some of which have been mentioned). I thought this was a good article on some of those triggers:
Also, oxygen (with or without pressure) does have vasoconstrictive effects, and it is unknown if this is somehow a factor for you (although you have done mHBOT for some time, and your PVCs have only recently increased).
I can say that my neighbor has serious A-fib issues (has had 2 ablations), and went to see our neurologist/HBOT specialist here, who prescribed a home hyperbaric chamber w/supplemental 02. She is doing much better now with mHBOT, and has been able to go off of some of her medications.
That said, I agree you are doing the safe thing by holding off on mHBOT until you are evaluated.
Please keep us updated...
Posts: 1886 | From Earth | Registered: Jul 2013
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Along with many others I have (on and off) these issues.
It was much worse early on while diving and are much better now,along with a potent (well adsorbed) magnesium I started to take a loaded multi vitamin....with minerals added and it seems to have helped.
Still suffering from constipation (sorry for too much sharing) however,is somewhat better.....and the reason I bring this up is,it seems the heart palps happened more when I did not dispose the waste in a timely manner??
So was (and is) mhbot destroying the bad stuff and I have to figure out how to rid of it?
That's my take,however,I am NO Dr....though even my Cardiologist stated "the Lyme can cause these".
I dove with the heart monitor on....it was only a 48 hour? wanted to show the Dr what was happening and now he saw it.......even suggested beta blockers....I said not quite yet.
I wish you the best with your decision and hope these get better,can be quite stressful while they are happening.
-------------------- Chronic Lyme Posts: 36 | From Florida | Registered: Jun 2016
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posted
I will be fitted with a 30 day event monitor in a few weeks as well as doing a couple stress tests for my pvcs. My man issue with them these days is I can't excersize to the point of breathing heavily without then being bombarded with pvcs until my pulse slows back down. This makes excersizing near impossible and also concerning.
My Lyme doc said it's likely something that I can build a resistance to over time if I slowly build up my excersize program. But for now the first thing I need to do is make sure it isn't a threatening issue.
Posts: 120 | From Maine | Registered: May 2015
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Monti, I am sorry you are having to deal with that. It gets un-nerving. But I am glad you are having the monitor done. Sorry that you have to wait a few weeks though! Nothing is speedy in health care anymore.
Posts: 1687 | From Maine | Registered: Jun 2004
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posted
Thanks kgg. A few weeks isn't a bad wait at all. I've had to wait 6 months and longer many times as I'm sure we all have.
Posts: 120 | From Maine | Registered: May 2015
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posted
You guys are so great with all of your input. I don't know where else I could have turned. Thank you so much!
I put on my O2 mask outside of the chamber and went 75 minutes with zero PVCs, so if anything it helped. I will wait to try the pressure until just before my cardiologist appointment.
Turns out there is only one Lyme literate doctor listed for Hawaii, she is a DO and on another island. At least that's someone, but no cardiologist. My LLMD in CA who I have phone appointments with was not able to comment on the PVCs. He's been "off" lately.
Posts: 22 | From HI | Registered: Apr 2016
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posted
Kristine001, have you tried an absorbable form of Magnesium, like the Glycinate chelate? It's very tolerable and slower to cause any bowel disturbance than most other forms.
You might try titrating up till you get loose stools and then lower the dose by 100 mg. For some people it works like magic for PVCs.
Posts: 539 | From NW Arkansas | Registered: May 2003
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Kristine, I am wondering if a lyme literate cardiologist would look over your chart and do a consult that way? Or have your LLMD consult with a LL cardiologist for you.
What do you mean your Lyme doc has been "off" lately? Physically not at work? Or not focused?
Posts: 1687 | From Maine | Registered: Jun 2004
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posted
Kgg - My Lyme doc has been unfocused. It happens occasionally. I stick with him because he understands my chemical sensitivity and doesn't require me to physically see him once a year. I have a lot of difficulty traveling, and everywhere is far from Hawaii.
I may take your recommendation on seeking a LL cardiologist if my appointment here goes nowhere.
Digby - I have magnesium glycinate but it hurts. It's not loose stools, its gut pain and inflammation. Like so many things. Citrus, vinegar, enzymes, vitamin C, most supplements and foods. Its as if the mucous lining my epithelial layer is totally eroded. Epsom salts or magnesium citrate in the tub gets my blood levels up, but doesn't affect the PVCs.
I've had much less trouble with PVCs since taking HBOT break, which is a relief but also disappointing because I've been so happy with my progress and don't tolerate herbs/abx. Too many SNPs, plus the gut thing.
Posts: 22 | From HI | Registered: Apr 2016
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Phoiph
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posted
quote:Originally posted by Kristine001: I put on my O2 mask outside of the chamber and went 75 minutes with zero PVCs, so if anything it helped.
Kristine...You had mentioned that your PVCs were worse when you are lying down. Were you lying down when you did this?
Posts: 1886 | From Earth | Registered: Jul 2013
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posted
Phoiph - Yesterday I was sitting up. Today I tried it again (just O2) sitting up, then after 20 mins I layed down and it started again! But not nearly as bad as in the chamber. I sat up after 20 more mins and didn't notice any PVCs, but it may have been because I was absorbed in a book.
Another possible clue is that I tested out a few sweet potato chips (not a normal part of my diet) just prior to putting on the mask, and something in them irritated my mouth, so it probably irritated my gut. I'm wondering about some relationship to the vagal nerve.
I might try light pressure in the chamber in a more upright position, although that may be difficult in a Respiro.
Posts: 22 | From HI | Registered: Apr 2016
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posted
Kristine001, Sometimes I have lots of irregular beats, SOB, and a pain in my chest like I'm being stabbed through the breastbone. Never figured it out, but the last time I ended up taking a week away from mHbot and it resolved. I think it might be some kind of die off, but who knows, at other times I thought it improved with magnesium, or acid reflux supplements. It isn't fun to have while diving.
So hope you get into the doctor quickly and they can give you some answers, it is hard to wait. I still feel better knowing a cardiologist said it's nothing serious. Hope you are able to get some reassurance.
Posts: 64 | From Washington | Registered: Aug 2015
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That stinks with the exercise and PVCs, what a pain to want to exercise but not be able to. Hope you get some answers to.
Posts: 64 | From Washington | Registered: Aug 2015
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posted
So an update on me- since I live at 6400 feet and many say this hurts the effectiveness of the chamber, instead I've just been breathing pure oxygen once or twice a day for about 20 min, and incredibly, I can say it seems to be helping. I'm not in any way claiming this is the same as a chamber. It's just what I had on hand so have been giving it a go.
Posts: 641 | From Nevada | Registered: May 2009
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posted
Hi Dan- I think it is great doing what you are able too and that you think it's helping!
Kristine- I hope things are going better for you and the pvcs are resolving.
Monti- I am sorry you are going through pvc issues as well. I think it is great you'll be monitored here before long.
KGG- I've heard great things about the low FODMAPS diet. I'm glad it's working for you!
Digby and Phoiph- it's always good to hear from you. We are super blessed by the support here!
I'm still at my hour a day with the mask and cruising along. I have ankles now- I did not realize how much edema I had!
I am less fatigued so that's nice but am going through the emotional piece others have described and some pretty intense migratory joint and muscle pain at times. Mhbot allows the deeper tissues to be penetrated.
Would love to hear how everyone is doing when you are able to post! Hugs! Posts: 859 | From Southeast | Registered: Mar 2011
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kgg
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Member # 5867
posted
Willbeathis, I had to smile when you wrote that you have ankles now. =) I have cankles and have hoped that it would reduce with diving. I am still waiting for it to happen, but glad it has helped you!
I had to take a break from diving for 3 weeks while we re-mediated mold in the lower level of our house. The longer it took the more tired I got. Plus I could feel the neuropathy in my toes was resuming. I was not a happy camper. Three days after I started diving again, my husband said, "Wow, what a difference diving has made for you! You could not do that last week." (I was shoveling snow......again)
He called my chamber the "tube of life" this morning. I liked that name!
Posts: 1687 | From Maine | Registered: Jun 2004
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posted
Hi everyone, I need help making a decision. I am very chemically sensitive, especially to plastic and PVC type material.
I am debating going with a NEW vs USED chamber. I'm worried the new one will smell too strongly of plastic. Can people please weigh in with their experiences?
Thank you.
Posts: 641 | From Nevada | Registered: May 2009
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I bought an used chamber for that specific reason. It was a year old. It still had an odor but not nearly as strong as if it was new.
Additionally, there are some brands that are stronger smelling than others. My chamber is from OxyHealth.
People have reported that Summit to Sea aka Healing Dives have a very strong off gassing smell. One member of our facebook group never got used to it. Plus, I know of a chiropractors office that had a Summit to Sea chamber. It kept blowing seams. My OxyHealth chamber is 11 years old and holding strong.
OxyNova supposedly is made of a material specifically used to prevent off gas smells. But I don't remember the material. They are a Canadian company but can ship to the US, if that is where you are from. Here is their website: http://oxysoins.com/ Their rep on the FB group seems knowledgeable. If something happens to my chamber, I have decided that I would at least investigate OxyNova's product. But I still like OxyHealth chambers the best. fwiw.
Posts: 1687 | From Maine | Registered: Jun 2004
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posted
Kgg, so you've had your chamber for 11 years now!? In all that time has it put you in remission? Can anyone comment on the odor of Newtowne Chambers?
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
No, I have not used my chamber for 11 years. That is how old it is. I have been diving for about 9 months.
Typically, there are only two concentrators that are recommended to be used with mHBO chambers. It depends on what unit you end up buying. Yes, I believe it requires a prescription.
That case was a very sad case. But we have all discussed that we would never leave a child alone in a unit. Who knows what really happened? OxyHealth is the one company that is FDA approved. There is a risk to everything we do to get our health back. Risk vs benefit? For me, mHBO wins every time.
posted
Two questions then... If some people take naps in the u Chambers, don't we worry about axphixiating while asleep since we wouldn't be aware of something happening like what I shared in that link?
Secondly, is it dangerous to fall asleep and have two long of a session due to oxygen toxicity?
editing to ask a third question: there is a massive price difference between the 27" vs 32" models. If I could sit up a bit and work on my laptop or read in the 32, it might be worth the price difference. can people comment on this?
posted
Kgg- we sound a lot alike! I love the tube of life as well! Your husband sounds great!
Dan- I too am SUPER chemically sensitive. Thus, I purchased a used oxyhealth for this reason at least in part. I am kind of a second hand gal due to these sensitivities. I have an Airsept concentrator and the smaller Solace as it was what we could afford at the time. If you want to sit up- not gonna happen in a Solace. I guess I'm a bit average weight semi petite(130 5 5"on a good day I might add;))- so honestly for me, dealing with the zippers etc (easier to maneuver I think because they are closer to me)- I think I prefer the Solace but if you're not somehow on the smaller end- even if you are my size and you want to sit up- I think you need the next size up. Had my husband been into this too, we'd needed the 27 inch. Phoiph and many others have the 27 inch and they can weigh in. Kgg gave you a great link to Phoiph's website. It will help if you read that website and even this thread- immensely.
In terms of falling asleep- I take my phone in and set an alarm. You can do that with a timer as well. I agree with Kgg- risk benefit! This is manageable with a huge upside I think. I found my system on Letgo.com and Phoiph and Peimomma were godsends. It helps to do the background reading so that you are ready to embark safely on this journey! Let us know how we can help! Dive on my friends! Hugs!
Posts: 859 | From Southeast | Registered: Mar 2011
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kgg
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Member # 5867
posted
I will answer one question and then let others respond. I bought the Vitaeris because my son tends to get claustrophobic. Plus he is a big guy. We put a wedge pillow in the unit to lie on. And a boomerang pillow for on our legs to support a tablet/laptop. Works slick!
As far as sleeping, there are athletes that sleep in them all night. So, no. For me it is not an issue. Sometimes I will nap. But most of the time I just read.
Posts: 1687 | From Maine | Registered: Jun 2004
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Phoiph
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Member # 41238
posted
Note: I had several professional NFL athletes (who knew each other) contact me asking if I could connect them with anyone interested in buying their smaller chambers, so they could upgrade to larger ones.
I asked them whether they actually sleep in the chamber all night. They all responded that if they do so, they are not actually wearing the mask and directly breathing 02 all night (which might cause 02 toxicity, IMO).
I definitely don't recommend sleeping in a chamber all night. I once fell asleep (slept through my alarm) for 3 hours (with mask on), and didn't feel well directly afterwards (I then skipped a few subsequent dives and was fine).
A good, LOUD alarm is very important, as you can definitely fall asleep more soundly than usual in a chamber...
As per the tragic accident where the son with autism was left unsupervised (and a bureau fell on the compressor tubing and disconnected it)...
It is my impression that he must not have been using supplemental 02 via mask from a concentrator as we do (i.e., just using ambient pressure), otherwise he would have still had an 02 supply in this situation...
Posts: 1886 | From Earth | Registered: Jul 2013
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I bought a new Respiro and it had at least a month of off gasing. I'm 5'3 and can't sit up but can put my knees up, read, turn from side to side and get comfy. I bought the Respiro because I'm claustrophobic and needed something a little bigger then the Solace.
I don't worry about any risk with the chamber, I completed 777 dives (full pressure 1 hour) and I've had no issues. My husband has completed 253 dives with no issues except more hair growth, better brain function and more energy. 😊
I have the airsep 10L concentrator and have had no issues, bought it new.
Posts: 233 | From AZ | Registered: Jan 2015
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posted
I love the extra room in my Vitaeris. It allows me to do simple stretches in the tank as well as having a wedge pillow and "accessories" in the tank with me.
I sleep in my tank when I feel like it but I use an alarm in the form of a meditation timer app on my tablet.
In that law suit, the court ruled against the plaintiff. The situation is very sad but in my opinion the law suit was frivolous.
My chamber was ~3 years old when I got it and it had no outgassing odor and I have a very sensitive nose.
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
Has anyone NOT been able to use their new chamber due to offgassing?
Posts: 641 | From Nevada | Registered: May 2009
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I have read of only one person not being able to use their chamber because of off gassing. It was on the FB group. I don't know if they are on this group or not. The chamber they had bought was a Summit.
Posts: 1687 | From Maine | Registered: Jun 2004
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posted
How do we know the benefit of mhbot isn't just breathing pure oxygen? I know they've done studies but have they compared pressure to just breathing o2 alone? Has anyone here compared?
Posts: 641 | From Nevada | Registered: May 2009
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posted
Dan67, I used an O2 concentrator @ 5 lpm for over 2 years before starting on mHBOT. I actually used it much more than the hour a day of HBOT, sometimes sleeping with a nasal cannula all night.
I didn't see any improvement in my health other than not waking up with air hunger during the night.
There you have it...an N=1 experiment. FWIW!
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
Digby- that is very useful info! You didn't mention whether mhbot helped you though. If it has not, then there would be no difference in the o2 results and the mhbot results, which wouldn't show they are different.
If mhbot has helped you can you share your story or a link to your story? I'm certainly willing to get an mhbot just Doug my due diligence on whether I need to spend the money or can just use breathing o2. Thanks!.
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Dan67. If you are not ready to invest in a chamber, I would start grounding. Check out the book "Earthing, the most important health discovery". I did use a chamber for about 2 years, but stopped due to facial pain. I began doing an hour a day of grounding , simply walking with bare feet or lying on the beach. It's very powerful !
I'm hoping to get back in my chamber again and start posting again, but had to take a break for a while.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Yes Dan67, it has helped me immensely. I have shared a bit about my improvement earlier in this thread. Can you search on my name and find it? I don't know how to link to a post.
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
Good to see you back Haley! Glad you found something to help you...
Thanks, too, Digby for your comments on your experience with just O2. Very helpful.
I don't know how to link posts either or I would do it... Dan, you should be able to find it under his name- Digby.
Have you thought about going to a local place to try it or renting a set up. I understand the research. It is a significant investment.
Like I told my husband the other night, I feel it is the best money we have spent so far with all of this and I have been to Germany for photons etc. I have been diving daily since Jan. 29th - So today was my 29th dive. I can tell you that Thursday night I had to be at a school to represent the company I run and quite frankly, I had a window of feeling better than I have felt possibly before I got sick. Thus, a TRUE glimmer of hope. I have simply read too much and learned too much to not believe this can do the trick.
If you think about it, the immune system must have the upper hand. Without that, we can have all the drugs etc in the world and still fail (other treatment modalities too). I have learned a lot by looking at how I have done with treatment for the last nearly 9 years and without a doubt, I think lyme replicated in me fairly fast (had a very fast moving acute case as my doc. said) that went chronic. I think when you have so many life cycles going in the body, it makes sense why I could never pulse antibiotics in the beginning (had to switch doctors because of that- now I see Dr. H and am very happy) and basically have to continually beat this stuff down on a daily basis. About 2 plus years ago, I started rife and until I started a program that hit the big three- (lyme, bart and babs), I wasn't making any real progress -- so again, the pulsing for me did not work. Quite simply, for my body, it has taken beating the heck out of it on a daily basis to gain any ground. My hope is that mhbot will bring the immune system/body some help with stem cells and the like as well as reduced inflammation (sorry but the book The Oxygen Revolution written by Dr. Harch would be a better reference here). The inflammation reduction has been amazing. I now have ankles and defined knees. Yes, I even like to look at them now I am so amazed. And for the record, I have not had a true babesia flare.
I will say this first month has had ups and downs and I have not been surprised. I can tell it is working. I had fairly bad brain effects with word usage etc and man that was kicked into high gear the first week or two ... thus, I knew it was getting to the places I needed it to get to. If you read the thread you will see people talk about retracing and that is what I feel is happening.
I am a very thoughtful (by nature a questioner) person and I do not just drink the Kool-Aid. I cannot afford to. I have been super research oriented about every step I have taken on this journey and so far, I stick by this being one of the most if not most powerful tools in my arsenal. I will say each piece -- meds (under Dr. H), Photons in Germany with Dr. W, Rife and concurrent herbal treatment under Dr. H has all had its place. I would add to that the importance of a good gut healing diet and exercise. Gentle with mhbot to start as I am too wiped for anything but. Phoiph recommended all of these things and I credit her and the loving souls before me to my success with all of this. I am able to run two businesses and know that would not be possible without all that I have done. Affording treatment can be tricky. Phoiph has resources and suggestions that can make the mhbot more affordable should you wish to go in with others in a community etc. She will tell you about the connections she has if you are serious.
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
I will finish by saying, I think the gut healing diet and exercise have been invaluable. If you read Dr. Burascano's guidelines, he says you will not reach remission without exercise. Those guidelines are posted on the main medical questions page. I will admit I thought I could around that one... not so fortunate. Literally, the gut healing diet (GAPS) (no sugar, gluten, egg or dairy - so basically paleo (gluten and dairy allergies) and moderate exercise with the other pieces I have done, I believe have gotten me to a fairly good place. I wish to share anything I have learned along the way to help anyone on this journey as I feel we can all learn so much from each other.... Keep Diving!
I should add detox. I am a BIG believer in detox. I have chem. sensitivities that went into high gear with Mepron some years back and infrared saunas and coffee enemas have been very helpful to me.
That's all I have...
Posts: 859 | From Southeast | Registered: Mar 2011
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Some of you may have read of my recent troubles. I had been feeling very good for a number of years until a puncture wound on my foot in September. This wound gave me what I believe to be a mild case of tetanus. I began to have muscle spasms and tightness for the first time in my life, almost immediately after the wound. I was in and out of the hospital several times last year.
The trauma also caused my Babesia to flare. I hadn't had symptoms of Babesia for years. Air hunger, hot flashes, headaches, fatigue. The symptoms were immediately recognizable to me as Babesia. I had long battled Babesia back in the early 2000's.
Fast forward to today. While I seem to have improved and stabilized a bit, I'm still not out of the woods. My foot still hurts and burns like crazy, right where the wound is, and in surrounding tissue. I've even noticed that the hurting and burning has gone up my ankle and into my leg a bit, which is terribly scary. However, all of my tests for osteomylitis and other serious infections have so far come back negative. Plus, tetanus isn't a highly invasive bacteria, so it wouldn't make sense that tetanus is causing this.
So, knowing that tetanus is averse to oxygen, I have been using a prescription to obtain medical grade tanks of oxygen and using a mask I have been breathing oxygen periodically, about once every day or every other day for a period of 20-40 minutes.
This is where you guys come in. I need your help!
There's no question that breathing this oxygen has helped me. But it has also seemingly made the babesia symptoms considerably worse - air hunger, shortness of breath, hot flashes, fatigue, etc.
So on the one hand it is helping me but on the other hand it is hurting me.
I don't want to get into the whole debate about HBOC flaring Babesia. I've read a few people on this thread who say it has flared their babesia, and a few people who say it hasn't. Do we really know for sure? I don't think we know for sure.
Phoiph has been kind enough to call me and speak with me. I believe her hypothesis that we need to get the immune system back online, instead of chase bugs, is a very valid approach.
One strange thing that has been happening to me is that breathing the oxygen has made the pain in my foot and lower leg WORSE, not better. This leads me to think that whatever is in my leg, is Babesia perhaps!? Why else would it get worse? Unless the oxygen is increasing inflammation and causing my body to fight more?
I'm considering getting a chamber because as I mentioned, the breathing of oxygen has helped me in some ways. But I'm also worried that it has seemed to make Babesia symptoms worse, and also has made the pain in my leg and foot worse.
Would love any input or ideas. (By the way, if you read my other post on my recent challenges, you'll see that yes, I've tried countless things in the last few months to combat this. If you want to suggest other modalities to me I am of course open-minded, but I don't want to hijack this mHBOT thread. Please keep your responses on this thread related to mHbot. If you want to talk to me about other treatments, please use this thread instead: http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/135563?)
Thanks in advance for your help and ideas.
Sincerely,
Bryan Rosner
Posts: 123 | From Tahoe | Registered: Oct 2016
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kgg
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Welcome, Bryan. I read your other thread when you posted it. I am sorry to hear that you are still not feeling better.
I have no medical articles to post to back my thoughts up. (I thought I read an article that mild hyperbaric was better than just breathing supplemental O2. But can't find it. =/ ). But since you are having a positive response to the O2 but not on the foot, is it possible you need to add the pressure of the hyperbaric? To deliver the O2 deeper?
Is it neuropathy pain? That's what it sounds like. mHBO helps me with that a lot.
Perhaps it is making your Babesia symptoms worse because you are not impacting the immune system with the supplemental O2 like you would with the mHBO?
I would assume that Phioph suggested to start low and go slow, like she does with us all. I second that suggestion. It helps to keep the herx at a manageable level.
I have Babesia confirmed by Quest lab, that tends to miss it. I did not have a rise in my Babesia symptoms when I started diving. fwiw
I know it is a big decision.
Posts: 1687 | From Maine | Registered: Jun 2004
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kgg
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Phioph, thank you for clarifying that the athletes don't use the oxygen mask while sleeping in the chamber all night. That is the first time I have heard that. Good to know, as I don't want oxygen toxicity. (Not that I think I could sleep in it all night anyway).
Posts: 1687 | From Maine | Registered: Jun 2004
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posted
No it's not neuropathy pain, it's very localized in certain tissues. It feels like an infection in the soft tissue.
I guess my question regarding babesia, boils down to this: Has anyone used the chamber, had their air hunger get worse, kept going, and then seen air hunger subside later on?
Posts: 123 | From Tahoe | Registered: Oct 2016
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posted
Hi Bryan, I haven't been tested for Babesia but I have had all the symptoms. I've been using mHBOT for a little over 2 years now and I can report that my air hunger is rarely a problem anymore.
I tried breathing O2 with a cannula prior to starting HBOT and it never helped beyond shortening an acute attack.
I still have drenching axillary sweats...no change there but I've never been sure if they are from Babesia or just a sympathetic NS aggravation. If it were full body diaphoresis I would be more inclined to think it was Babesia.
If your "infection" is not from Babesia, I would think using a chamber should help. Have you considered getting treatment in a regular HBO chamber to test the waters?
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
Bryan sorry you are dealing with the leg infection. I also had symptoms of babesia but no positive labs, so am not sure if I'm treating babesia, mold/low vegf, hhv6, anemia, or what, but my breathlessness did get worse (multiple times) over the course of the year I have treated. I would have weeks of breathlessness, stabbing chest pain, and fatigue, that would then get better. I am better now than I have ever been and have felt really consistently well, albeit mild flares happen a few days here and there. Hope you find what works for you.
Posts: 64 | From Washington | Registered: Aug 2015
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Interesting you bring up the Babesia and mHBOT thing again...
I too have the exact same classic babesia signs that you have... (minus the foot thing of course) but hot flashes, occasional night sweat, and AIR hunger.. (lots of that)
Before mild hyperbaric, I only had veeery occasional night sweats. When I started mild hyperbaric, I right away flared with what seemed was a Babesia flare...
Since faithfully diving for over a year, I would say my babesia infection is WORSE than ever! I am so frightened that the mild hyperbaric has held me back!
I developed air hunger and my fatigue worsened. I recently (and reluctantly, I actually like diving) decided to quit hyperbaric and see what happens. I have been off it about a month and I so far I haven't worsened.
I did start high doses of arginine two months ago which made my air hunger worse,(but helped Sensitive hearing PTL!!!) and It seems l arginine and mild hyperbaric work in a similar way, by creating nitric oxide. I have been thinking about quitting that too... I don't knoooooooooow!!!!
I certainly don't want to be antagonistic... It obviously doesn't harm everyone with babesia as we know by Dear Phoiph and others... but what IF?? There are some people it DOES?!!!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
Jolley -- do you attribute your great improvement to mhbot? You are still using it?
Foxy, thanks for the info. Did you make other gains doing mhbot for a year? Other symptoms improve? Breathing pure o2, I feel Babesia has worsened but other symptoms may have benefited. Not sure if it's a worthwhile tradeoff though...
Or perhaps, diving with just pressure and not o2 would be a compromise?
Posts: 123 | From Tahoe | Registered: Oct 2016
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posted
Bryan, my Dr. does a fair amount of mild hyperbaric therapy. He did admit to me that it seems the hyperbaric doesn't help Babesia, (I take that to mean directly, obviously for some it did) for whatever that is worth...
My primary symptoms are odd nerve sensations inside my head and nose. I didn't see any improvement that I can definitively say. In the beginning, it almost seemed like it was helping.
I had increased dreaming, and seemed like it may have relieved a certain aspect in my head... but then it kinda petered out and nothing else happened.
Because of the increased babesia symptoms after my first half hour dive, I only did the pressure for a while. I didn't react as badly with that, but not sure I saw improvement either?
Oh, and my dr did say that he often sees some sort of improvement in his patients that use hyperbaric. He thinks it can keep lyme infection down without antibiotics. That's a pretty powerful thing to say!
I will say, I did go off lyme antibiotics and didn't crash... but they also didn't seem to be improving me either...
I hope my unbiased viewpoint is helpful... I am experimenting myself!
Oh, I also had a neighbor that tried mild hyperbaric for about six months. He thought it made him worse, and quit and improved some.
I don't know! There are a LOT of variables in here. I used antibiotics and antimalarials in conjunction, so maybe that's the reason hyperbaric didn't work for me. Maybe I didn't have enough faith to let it be my sole therapy!
If anyone has any advice or wisdom on my babesia problem, I am all ears and am VERY open minded to suggestions...
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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kgg
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posted
Foxy lady, you are right. There are so many variables. My naturopath wants me at least on herbals for my Lyme/babesia/bartonella. But I keep resisting her. First, when I tried just one drop, I felt worse. Whereas, at that point, I had been only diving and had felt better. So I have yet to add in herbals. At this point, I am going to tell my naturopath that on herbals we are going to have to agree to disagree. ;-)
I wish I could offer some wonderful wisdom for you on Babesia. But I really don't have anything to offer. I did the Mepron/zith route twice. I hope to never have to swallow the yellow paint again. Considering I was not symptom free, I would guess that Babs still played a role in my poor health. But mHBO sure has helped me.
It is so hard with tick born illness, because we all react so differently to treatments. Interestingly, my young adult son, who never reacts well to any treatment and still struggles with fatigue issues responds well to mHBO.
Posts: 1687 | From Maine | Registered: Jun 2004
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posted
I just talked to Samir , the CEO for 20 years of Oxyhealth , and he said you do not need to breathe o2 in the chamber and that a recent study showed you get results without o2. Does anyone know which study he is referring to? This is a big statement coming from the CEO of Oxyhealth.
Posts: 641 | From Nevada | Registered: May 2009
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posted
Very interesting Dan. I wonder what simply diving without the o2 would do to the Babesia?
I think. Somewhere in the back of my head... that there was a study with mold. and that mild hyperbaric was very helpful but there was no supplemental oxygen.
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
Wish I could attach it here but Samir sent me a PDF with some studies in it showing that no o2 was required. I mean, real scientific studies. I'm not saying the o2 doesn't help (I know Phoiph will be here shortly to chime in...). But it's good to know that the Babesia issue may be circumvented by experimenting without o2. Or, maybe something like, use o2 every 3rd dive.
I have the interesting benefit of being at 6500 feet elevation where I live, so whenever I visit sea level, it is like a hyeprbaric treatment! And I usually don't have babs flare ups when I visit sea level so I'm assuming I won't in a chamber with no o2.
Samir also said he didn't think my elevation would be a problem with hyperbaric because it is the RELATIVE change that heals the body. My body is already in equilibrium at 6500 feet so the "punches" (his words) of pressure will work the same regardless of what elevation you are at. Which really makes sense, since sea level is really an arbitrary elevation, there's nothing magical about it.
Posts: 123 | From Tahoe | Registered: Oct 2016
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Phoiph
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Regarding altitude, it depends on what you're using hyperbaric to treat.
If you are an athlete who lives at a certain altitude and wishes to treat an injury (or just improve your performance), then in theory, adding mHBOT will help as it is a relative change to what your body is used to, and will signal healing reactions.
If you are treating a specific infection, however, then there are certain levels of oxygen saturation that must be reached in the tissues to disarm or kill that pathogen. This is why different conditions are treated at different pressures (e.g., infected non-healing wounds are treated at a higher pressure than a brain injury).
In this case, the amount of pressure you receive matters, and you will receive less pressure as your altitude increases. Adjustments are made for this in clinical HBOT chambers.
That said, it is not ALL about killing pathogens through mHBOT, but by enhancing immune system health so it can do the job it was meant to do on the pathogens.
Treating with mHBOT at your altitude of 6,500 ft. will be a relative change for your body, and depending on your state of health, may help you. But, as we discussed, I know of someone with Lyme who treated at 5300 feet with a home chamber and supplemental 02, and their condition did not change. My neurologist/HBOT specialist friend concurred that the altitude was likely too high for this amount of pressure and rendered the treatment less effective in this case.
Posts: 1886 | From Earth | Registered: Jul 2013
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Phoiph
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quote:Originally posted by foxy loxy: Very interesting Dan. I wonder what simply diving without the o2 would do to the Babesia?
I think. Somewhere in the back of my head... that there was a study with mold. and that mild hyperbaric was very helpful but there was no supplemental oxygen.
posted
Bryan, I am sorry to hear that you are still struggling with babesia and your foot injury. I wanted to chime in as I am a relatively new diver so to speak but I seemingly have done just about every treatment out there- photons and the like. I can tell you that I had hesitation about the potential babesia concerns that others that have discussed as it was a big problem for me. Dr. H was okay with me trying mhbot as long as my babs was not flaring. He really did not tell me more than that. At that point, I was ready to give it a try because the rife program that had helped me so much began to be less effective. Additionally, the doctor out of Maryland I believe addressed this concern rather well and it allayed my fears- as well as Phoiph and the others that went before. Now, true, not everyone has had the same experience. I wish I had an answer for you. What I learned from Phoiph seemed to just ring true for me and make sense. Basically, getting the immune system on board. Something I know I lost sometime ago. Well, I think my first dive or so, I had a babs flare (1). And I have been diving for an hour for about three weeks with oxygen and have had no babs issues. Drenching sweats are my tell tale. Now I am using rife and herbs right now until I gain more ground with the mhbot. Have you thought about renting a system or talking to Phoiph about options to try out what you have discussed above- that way you wouldn't have to make a full investment. I would have to say that babs was probably my worst infection and so far so good. If anything, I am fatigued and I can feel that the oxygen gets to places I wasn't able to get to before as I am having some brain herxes etc and retracing but no real babs. That is my experience anyway. I will be thinking of you and you sure have come to a great spot for assistance with this modality. Godspeed.
Posts: 859 | From Southeast | Registered: Mar 2011
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Phoiph
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FoxyLoxy...
Thank you for making the point that there are a lot of variables involved, and that your were treating with "antibiotics and antimalarials in conjuction", with mHBOT, which may have affected your results. In observing and comparing people's reactions to mHBOT over time, it appears this can definitely be a factor to consider.
Also, if someone has been on pharmaceutical treatment for a long time, there are more layers of toxins in the body to remove. It may actually take more time to see results in this case than someone who is even more symptomatic, but has not been on a lot of medications, for example.
I'm not saying this is necessarily true in your case, but am agreeing with you that everyone brings a different history to their treatment.
Sometimes it takes some brainstorming and tweaking to discover anything that might be interfering with progress. If you decide at some point you wish to continue with mHBOT...please feel free to PM me so we can do that!
Posts: 1886 | From Earth | Registered: Jul 2013
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Phoiph
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Regarding using a chamber without supplemental 02...
Using pressure alone raises the oxygen level in the chamber slightly.
I personally know of someone who (at sea level), improved tremendously by diving twice per day, 1-2 hour sessions, for 1 year without supplemental 02.
She stopped diving at 1 year, and unfortunately relapsed after a very stressful time in her life. Once she started diving again (once a day for 1 hour with supplemental 02), she recovered.
It is unknown if her treatment would have been more effective had she treated the first time with supplemental 02. Regardless, I am quite sure that 1 year was too soon to quit diving in her case.
Bryan...in your case, where you are already at a disadvantage due to your altitude, I would strongly consider using supplemental 02. Even if you don't use the mask at first (and you wouldn't if you are going to increase your dose slowly in the beginning), you can still let the supplemental 02 flow into the chamber.
Posts: 1886 | From Earth | Registered: Jul 2013
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posted
Bryan, yes, I am only treating with mHbot and dive daily. I'm not planning to discontinue until I'm totally symptom free for an extended period. It would be great to wean down a bit around the two year mark, but I might daily dive indefinitely.
Posts: 64 | From Washington | Registered: Aug 2015
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posted
For anyone who bought a Respiro chamber, can you please tell me the dimensions of the boxes that it was shipped in? I am buying a used one and the seller doesn't have any boxes. Thanks!
Posts: 123 | From Tahoe | Registered: Oct 2016
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posted
Hey Bryan- How about just asking him to take everything to UPS and have them pack it. The seller did that for me as its so important with the compressor in particular and in my case the air concentrator as it has to be upright etc. I got on the phone with the UPS person at the store that day to reiterate how important it was to get to me in working order. She understood and extra care was taken. I paid for this of course but it was worth it! Congratulations on this step! Welcome! Posts: 859 | From Southeast | Registered: Mar 2011
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posted
Feeling it today! Worst herx yet. I am thankful to Mhbot - Phoiph and Peimomma for walking me through this. So thankful to know my immune system will finally be back in charge again. On an interesting note I am always hungry now and seem to be less chemically sensitive. I'll take it! Thank you all! Everone else doing okay??
Posts: 859 | From Southeast | Registered: Mar 2011
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Funny how we count the little steps like less sensitivity as such good news😍 I was herxing for a couple of months, constantly feeling terrible, up in the night but then a few hours of energy here and there.
It's like seeing some sunbeams through the clouds. I was looking back at my journal from 2 years ago and reading over some of the terrible nights and days I had but also the small accomplishments.
I hope you are keeping a journal.
I love your updates, it brings back memories of my journey. You started almost 2 years behind me so I look forward to reading your posts in Feb 2019. It goes fast💚
Posts: 233 | From AZ | Registered: Jan 2015
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posted
Awww... I have never needed a post so much.... Thank you, Peimomma.... I am indebted to you and to Phoiph. Your encouragement has truly been the light at the end of the tunnel even before I started this journey. I haven't been keeping a journal as well as I should but I will starting today. It is truly comforting to see that you had rough patches like this too....
It gives me hope. Thanks, Phoiph for warning me that rough waters were ahead. And, never letting your light diminish.
I will continue to update you all and Peimomma.... again, thank you.... I am SO GLAD you are where you are today and yes, I look forward to to my posts in Feb. 2019. Maybe we need to plan a trip... We could meet up with Phoiph and have lunch... Gosh, I hope your new job is going GREAT and that you are making your way back to where you were with the mhbot. You have accomplished so much.... it is no wonder that with such big changes, you may have needed more bonding time with your Respiro! Let me know how you are...
Phoiph... I hope you are doing well! Thank you for all you do for so many....
Kristine, Kgg and Jolley... How goes it?
Digby, are you still making strides? You too have been SUCH an encouragement to me....
Thank you all.... Posts: 859 | From Southeast | Registered: Mar 2011
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kgg
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Thanks for the encouragement to post, willbeatthis. I had a return of a low grade fever this week, that left me lowly motivated. Then yesterday the fever left.
I was able to attend a women's breakfast yesterday. I was able to interact with people. By the end I was really tired. I was wiped out for the rest of the day. But it was really nice to be out.
Posts: 1687 | From Maine | Registered: Jun 2004
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I'm loving my job and still holding up beautifully. I have continued treatment 7 days a week to give my body the extra boost as it adjusts to the busy schedule. My work days are 10 hours with commute, lunch and actual work time. I start with a dive at 0430 then get ready and off to work. I arrive home at 5:00, eat dinner and off to the gym I go usually arriving home by 7:00 pm for a little relax time, shower and off to bed by 8:30.
I walk about 2 miles during work split between breaks and my lunch to get fresh air and O2 pumping. In total I walk between 5-7 miles a day.
I try to get 7-8 hours of sleep and a little more on weekends.
When you keep a regular daily journal it will encourage you as you continue to see on paper those small breakthroughs that keep pushing you toward your goal.
Gentle hugs mHBOTers
Posts: 233 | From AZ | Registered: Jan 2015
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posted
Kgg- It is great to hear from you and that your fever is gone. Also, that you got to go out to the women's breakfast. I will pray that you keep improving. Thanks for posting. I hope your son is continuing to respond well too. It's a blessing to find a natural treatment to work- as I hope too to never swallow the yellow paint again- that Mepron is just awful. That is really when I became super chemically sensitive- had trouble finding a car I could drive. Thankfully that's much improved now.
Oh- Rock Star- Peimomma! Wowser! You really know how to inspire! You are doing fantastic! Five to 7 miles a day! That is perfectly awesome and then putting in a full day with a commute. Well, my hat is off as you've worked so hard to get to this place! I know your husband must be so happy too!
Hey Jolley- how are you? And Haley, is the grounding still helping you?!
Has anyone watched the Thyroid Secret you can watch for free right now- each day is a new topic online. You can google it. It's been very informative- until 6 pm today's it's on chemicals - very interesting with good detox info. Just wanted to pass this on!
Keep diving!
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
I'm excited to report that I am getting a used respiro to try to finish off this foot business and the havoc it has caused.
The seller says it doesn't come with the part that goes around the concentrator hose in the hole in the chamber to keep from letting air leak out between the hose and the chamber. Maybe this is called a hookup kit? Can people share what they use? Thank you.
Posts: 123 | From Tahoe | Registered: Oct 2016
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Phoiph
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Bryan...
There is a "hyperbaric hook-up kit" made and sold by the concentrator vendor I mentioned.
It consists of tubing with a brass fitting that screws onto your chamber 02 port. There is a piece of electrical tape wrapped around the tubing to act as a "cork" to keep it from sliding out.
If your chamber doesn't already come with this, it can be ordered separately...but let's see what it comes with first, so you don't buy something you don't need...
Posts: 1886 | From Earth | Registered: Jul 2013
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posted
Thanks phoiph. She told me expressley that it does no come with that part. So I need to buy one. What part number to I reference when contacting? And is it the same gentleman who you sent me to for the concentrator info? Sorry for typos typing on phone
Posts: 123 | From Tahoe | Registered: Oct 2016
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kgg
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Kudos, Bryan!
Posts: 1687 | From Maine | Registered: Jun 2004
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Phoiph
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Bryan...
Yes...if you look back on the attachment I sent you re the concentrator, all the info on the hook-up kit is there, including pricing. If you need new masks, you can order them at the same time.
If you need me to resend the attachment, let me know.
Posts: 1886 | From Earth | Registered: Jul 2013
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Haley
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This is my latest theory. - mHBOT + not eating = success.
I eat healthful foods, but have noticed lately that if I dont eat at all I feel much better.
I thought about Phoiphs journey and wondered if that may have helped her to turn a corner.
I am back in my chamber and will experiment with bone broth only for a few days, then eat very little food for a while. I will let everyone know how it goes.
Welcome to the group Bryan.
Posts: 2232 | From USA | Registered: Aug 2009
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I am so frightened that the mild hyperbaric has held me back! 
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