posted
Interesting. Now I see what my local doc meant.
Lyme vaccine- Peimomma- I thought you said flu vaccine. You couldn't pay me millions to take a lyme vaccine- nope, would NEVER do it.
Please tell me you meant flu. Goodness, I hope so! And I don't even know if that's advised for chronic lyme. Keep me posted! I'm praying! Hugs!
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
Looking for personal experiences - has anyone had heart or chest pain issues exacerbated wirh Hbot? It's definitely a herx for me, not some underlying heart issue. I've had it before. But it's still scary and I'm wondering if anyone has experienced this and pushed through.
Posts: 123 | From Tahoe | Registered: Oct 2016
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posted
Hi JCarl- yes, Gentamicin can cause ear issues and exactly why my local doc said NO GO. I only used it last year after 3 back to back sinus infections with three different abx used and then significant regression with my lyme. I know my nurse prac. made the right call for me but of course, this needs to be discussed with your doctor as with any medical treatment.
Bryan, I am so sorry to hear this. On page 23, Kristine001 and Monti detail issues with pvcs I believe. Please read. One or both have gone on monitors I think. Girls, would you chime in please.
Thank you... and Bryan, Godspeed with this piece!
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
A few interesting things I've heard. Dr. H, who's treated over 12,000 Lyme patients, says that he's personally seen HBOT reactivate Babesia. He told me this in an email today. FYI. I'm still finding the HBOT to be well worth it, though.
Also, the gentleman who I believe told Phoiph about HBOT years ago, and who she credits for saving her life, has told me that he does believe it is OK to "stack" HBOT with other therapies, of course being forewarned that HBOT can potentiate and change how the body responds to therapies.
I'm not personally taking any stance on the above points, and I'm not trying to start a debate, just thought it would be interesting to point out these two items.
Posts: 123 | From Tahoe | Registered: Oct 2016
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I would agree that the oxygen does not seem to help protozoan or parasitic disease. I choose to treat that in addition to HBOT.
I think the hope is that the body will get stronger and take down whatever has not been hit by HBOT.
Thanks for sharing the information ... very good to know.
How are you feeling?
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Haley, the HBOT is definitely helping me and my foot. There's no question about it. Been about 14 dives now.
I do have a nasty mercury stir up about once every year or two. It used to be much more often, but chelation with the Andy Cutler method has knocked it back to being very infrequent. So I'm dealing with one of those right now. But other than that, I'm becoming a believer in the chamber!
I'll prepare a more detailed update over the coming weeks.
Posts: 123 | From Tahoe | Registered: Oct 2016
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Awesome!!!!
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Hi Bryan and Haley! Haley I always love to see your posts! Did your sickness from the ocean resolve? I've been thinking of you.
Bryan, that is great to hear your chamber is helping you. I'm going to get Cutler's book. I'm sorry you're going through that piece.
Dr. H is so wonderful. Thankfully in my case, no babesia flare. I just talked with JF via phone consult and we want to give this 9 months or so. I do know that compared to my hours of rife- Dr. H was much more supportive of trying this.
Bryan, do you ever worry about emfs with rife? That seemed to be his biggest concern. Until I can wean off - I'm at about 3 hrs a day.
Haley, I'm using rife for parasite stuff when I need it- I have someone that zyto scans me so I'm able to know what needs addressing. What do you use for these other pieces? I also have a zapper I use daily for parasites. Goodness knows 10 years ago prelyme- I had a lot of free time on my hands. The zapper tends to keep parasites fairly at bay.
Good to hear great reports! I'm relieved for you, Bryan!
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
EMF is a concern. 3 hours per day is a lot. I tend to find when someone is using the rife devices that long, there may be other therapies out there that are better targeted. In other words, that much time means the rife isn't working very well or targeting very well. Rife for borrelia shouldn't take more than about 1 to 2 sessions per week. For co-infections, it may need to be used more often, but may not be the most efficient approach.
I know Dr. H isn't a big fan of rife, he's told me that before. I respect his opinion. Rife has been the primary therapy, though, which brought me out of my deathbed and back to a normal life.
Posts: 123 | From Tahoe | Registered: Oct 2016
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posted
Thanks, Bryan, for your response. I agree with you that Dr. H is not a big rife fan. Though I will tell you, I think it did a similar thing for me in terms of marked effect.
I agree totally that something is not working with it, thus, I landed here. I think it might be time to back off as I had planned to do. I'm really glad it helped you as much as it did. You make a strong point- I'm going to go to hitting lyme 1-2 times a week and confections daily and then back off there. Phoiph, hopefully this sounds like a good plan to you as well.
I sure appreciate the round table here, it is invaluable.
Bryan, have you had any luck with bigger chambers? So happy for your success! Thanks for your insight here as well. Much appreciated!
Kristine, KGG, Peimomma, Digby, Et al- How is everyone?
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
I appear to be responding more to babesia medication now that I stopped hyperbaric.
I hate that it isn't working for me!! I like diving!
My Dr. agreed though that it is probably best to quit the chamber too. He didn't out right say it, but I got the distinct feeling he didn't act like it was totally off the wall to think hyperbaric might be somehow keeping the treatment from working!
He thinks maybe later after the babesia infection is better I could go back on it. But if my weird head would clear on babesia meds... I might be scared to try hyperbaric again!
I will keep you posted as to what happens next. If I continue to respond to medication, It would really appear that the chamber was doing something negative in my case. HOWEVER...
There have been a few slight variations in my other treatment. I just somehow don't feel as though that is what has caused the change though.
Now one of my friends is trying it! She is having trouble with her ears too, so I am not sure if she can do it or not! It will be interesting to see how she responds to it.
Thanks Bryan for passed on info from Dr. H. I found it helpful.
Thank you Phoiph for your support in my case as well! You really are wonderful! Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
Magnesium has helped the heart symptoms....120 days off meds and my gut feels like it's trying to function again.
Less joint pain.
Brain fog (slowly) getting better.
Some strength is back.
Depression has settled down.
PVCs....Cardiologist says my heart is strong enough...did offer a beta blocker at one point and I refused.....sensations not as bad...when compared to just under one year of diving. Keep in mind I started Very slow due to some intense reactions (was on 4 different meds at the time).
Today is my Birthday...the calls and well wishes are far and few between (due to a secluded life for a few years).
Phioph has helped me tremendously and I am thankful I discovered this therapy....it may have saved my life.
Less is more strategy seems to be working for me (fingers crossed)....if the light Babesia symptoms are still around in a few months then I will add a very light herbal remedy.
I still can't believe that I now look foward to my daily dives).When I first started I p!ssed and moaned about doing so......until some of the original nasty symptoms started to retract.
My mind is trying to clear....apologies for the jumbled post.
Been reading these posts and just inspired by the will power of a group in a situation......trying to find answers.
My next Birthday I plan on being well....90-100% well)
Warm Regards
-------------------- Chronic Lyme Posts: 36 | From Florida | Registered: Jun 2016
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posted
Happy Birthday and congrats on the continued progress Reminder🎂🎁🎈🎉
It is a long road to recovery as I am still experiencing even though I'm back to work.
I was reminded this week how much my body still has to heal when I received a few of my labs back. I am happy to say that my CD57 has climbed to 40 from 26 a year ago but I must confess I was disappointed 😞 HHV6 is still positive and maybe someone knows if that will ever go negative? I'm waiting for the C4a still, had to redraw it this week.
My coinfection still negative and I'm still diving daily and working full time.
I posted that I was going to the NASCAR race a few weeks ago, I only lasted 90 minutes at the race. It was 98 degrees and we were in the sun, the noise was out of this world loud and the smell of tires and engine fluids rounded out the perfect trifecta for this girl. It's taken about a week of rest to normalize and feel better.
Work is still going great and my body is holding up with the 10 days. I'm still sorting out my feelings of disappointment over the labs. Part of the frustration is I know I've had Lyme for 27 years so how much damage was done in those years is hard to tell and how much is permanent? The lingering question for me is will I have to dive everyday so that I can work? I plan to retest my labs again after a year of working to see if my numbers have improved, decreased or stayed the same with the stress of the 10 hour days plus living a life.
Posts: 238 | From AZ | Registered: Jan 2015
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posted
Yes, Happy Birthday, Reminder! I am extra happy for your gains!
Foxy- I am glad to hear you are responding to your current treatment. Lyme and Co.s are so tricky- what you need a year from now may be different. I think we have to be flexible- gosh, I've learned that!
Peimomma- look at the strides you've made in two years! They are incredible! You are working 10 hour days with commute and exercise. I think it may take time for your blood work to catch up- there is so much we don't know, I think celebrating your gains is so important. I believe Phoiph dives 3to4 days in a row every week to date(hope I read that correctly). I think that's a great goal to work toward. I think right now you have to remember you've gone through a move, working 10 hour days and maintaining a full life. It makes sense to me you may need extra support.
Phoiph-just a quick update. Feel like I'm making some progress despite being sick of late. I'm not going to change anything right yet and I will be in touch with you before I do. Thank you for your tireless efforts on behalf of us all. Praying for your family-
Thanks, Bryan, too for your contribution and help.
I appreciate you all! Dive on!
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
Could anyone tell me the dangers of oxygen toxicity? Is that possible with mHBOT?
What are the signs?
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Thanks to everyone for the kind comments . It is great to read all of the updates!
Bryan...You mentioned that Dr. H has "personally seen HBOT reactivate Babesia."
Do you have any more information that would help us understand the context in which he was speaking?
For example, is he talking about HBOT only, or also including mHBOT in this observation? What protocols were these patients doing? Were there competing or interfering therapies involved? Could the "reactivation" symptoms/flare have been a sign that the immune system was actually starting to fight the infections?
FoxyLoxy...I wish you all the best, and do hope you continue to keep mHBOT in mind. If you find you want to return to it, I would be happy to help. Maybe together we can sort out some of the variables...
reminder...Happy Birthday! The best is yet to come...
Peimomma...hmmmm...let's see...you went from very ill to working full time, exercising daily, traveling via motorcycle, moving out of state, tolerating 90 minutes of direct sun and 98 degree heat with deafening noise levels and toxic air, have an improved CD57, a negative co-infection result, and you're feeling disappointed? Your progress is amazing!
I believe you will reach a point where you will not "need" to dive every day to maintain your lifestyle. But...there is an "energy in, energy out" equation that you have to consider. You are living a very full life and putting out A LOT of energy...and since you are still healing, you will need to provide ample time for restoration.
Right now, you might be breaking even, but you don't want to push too hard and fall back at this relatively early stage. If you find yourself becoming mentally tired/down, this may be a first sign that you're stressing yourself a little too much, and need to take time to recharge your batteries.
willbeatthis...glad you're doing a little better. Thanks for all of the encouragement and support you offer here.
HW88...Susceptibility to oxygen toxicity varies among individuals and can vary even in the same individual from day to day (as evidenced in scuba diving). That said, if you are only doing 1 hour of mild pressure with 02 from a concentrator per day while resting in a chamber, it is unlikely that this dose would result in oxygen toxicity.
Are you having concerns?
Posts: 2079 | From Earth | Registered: Jul 2013
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posted
Oh yes, Phoiph, I definitely am still keeping mHBOT in mind. And YES, I may just bug you again about it one day!
But as long as I think I see improvement without it, I probably won't. I haven't seen substantial improvement in six years, so this would be pretty momentous for me, if I keep improving...(always big IF, right?)
I was really, really hoping it could be a therapy that I could do the rest of my life (or at least a long time) to keep Lyme away... and maybe it still can be. I shall have to see!
I will still lurk around on this thread though. I am curious to see how others will respond and think it is still a GREAT therapy!!!!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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I am just trying to do all my homework and covering benefits/risks--which everything has.
I would actually really like to try it, but not quite sure how to get started without paying 10K for something that may or may not be the right therapy for me.
peimomma, I would go with how you feel... and from what it seems, you feel great. I doubt we can rid EVERYthing in our bodies. You are one that gives me hope that someday I'll have my full life back.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
HW88...
I can help you with getting started. There are options other than buying outright, such as renting, and renting to own, etc., or group sharing.
You can PM me...
Posts: 2079 | From Earth | Registered: Jul 2013
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posted
Peimomma.... I second HW88. I am not sure we can rid our body of everything either... Thanks for being an inspiration to us all.
HW88- I would be happy to talk to you as well about how I proceeded through this. You can message me as well. I would say I am beginning to get really good results now... It is still early yet but I had similar concerns as you did. Phoiph is WONDERFUL and a godsend of a resource. She will walk you through everything. If I can answer any questions, of course, I would be happy to as well. I believe Bryan and I are both the most recent folks to take the dive (LOVE that).
Foxy, I pray your treatment will continue to move in the right direction and your support here is always welcome. You're a kindheart... it is obvious!
Haley, I am always thinking of you and wondering how you are doing. Any updates?
Kristine and KGG? How goes it?
Phoiph.... WE THANK YOU! Posts: 859 | From Southeast | Registered: Mar 2011
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posted
phoiph, I PM'd you a couple days ago. I was waiting for you to respond. Let me go look at my PMs and see if it actually sent.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
Darn, it didn't send again. I've sent it twice. I'll try again. Wonder if your mailbox is full?
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
So good to hear from you Haley! You were around when I went to Germany in 2012 and I've always admired your tenacity!
I will definitely look at this real food rebel website. It sounds like you are doing really well- getting to the beach everyday and even exercising! Kudos!
Glad the facial pain is better. I remember being in Germany up all night after a photon session thinking I had something really wrong- lots of pain- in my jaw like a bad toothache- saw a dentist, he said no issue and I treated the area with photons per my Dr. and it finally went away. I think Lyme can burrow as we know. Have you thought it could be getting at some Lyme in your face? I just wondered. It is alarming regardless I know.
Sounds like you are overall moving to much higher ground! Hooray! Thanks for the smoothie recipe as well! Thanks for posting!
Bryan, how's it going for you? Any luck on a bigger chamber?
Hugs All! To O2! Posts: 859 | From Southeast | Registered: Mar 2011
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Peimomma~
It's human nature! Once we began to feel better and life "normalizes", it is so easy to lose perspective and forget how far we have come.
It has been almost 6 years now since my first dive, and I'm amazed at how even the most tortuous experiences fade over time. I credit the chamber for that, with its ability to treat PTSD and trauma.
When I look back at the log entries I kept during that dark time, it is a difficult and sobering reminder, but reading them gives me a humbling sense of awe and gratitude. My current every day concerns seem laughable in comparison!
Posts: 2079 | From Earth | Registered: Jul 2013
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If the power goes out, we lose not only fresh air from the compressor, but also the mask o2 turns off.
Will there be enough time to decompress and get out, before we die of oxygen deprivation in the closed space?
Has anyone had a power outage and got out just fine? Just curious, as it is super windy here today and there's probably a 30% chance we'll lose power in the next 24 hours!
EDITING TO ADD: I was talking to one of the owners of an HBOT company and they said ear damage can ONLY occur during inflation, NOT during deflation. he said he's run tests where they deflate from 7psi to zero, in about 5 seconds, and no ear damage. I'm not suggesting we all go do this, but it's good to know in the event that you need to get out fast.
posted
I sure hope so Bryan! I remember Phoiph talked about this and it seemed you just decompress right away and get out.
Phoiph- I'd love to hear your thoughts on this- and anyone else for that mater. We've had bad weather here too!
Posts: 859 | From Southeast | Registered: Mar 2011
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
The guy from oxyhealth that set mine up said it's no problem to completely decompress quickly , in other words turn knob all way to open valve.
I usually do it slowly, but know that there is no harm in doing it quickly.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
I have solved the power outage problem thanks to Jean-Francois Tremblay (he works with oxy nova in canada) idea. I have a computer backup battery and tested it and it will run my compressor for 20 minutes in a power outage. I will use it plus an alarm on my power outlet to notify me of a power outage. This will allow for a smooth non-rushed exit. It may be overkill but i don't care, I really don't like the idea of a power outage turning off my compressor. In windy stormy weather we do get power outdages often. This is the battery backup I have, FYI http://amzn.to/2nJpPnHPosts: 123 | From Tahoe | Registered: Oct 2016
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posted
Pei, I'm sorry your labs weren't what you had hoped. I'm glad you are feeling well, but that is still a bummer.
Bryan, my husband was in the chamber during a power outage and did fine. The chamber deflated within 4 minutes; no concerns about suffocating, I think it'd take awhile to run out of air.
Posts: 64 | From Washington | Registered: Aug 2015
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posted
Phoiph, how often should you switch out tubing to your concentrator? Do you ever replace the big tube that links with the compressor?
Posts: 64 | From Washington | Registered: Aug 2015
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
I've been in my chamber many times when the power has gone out.
The oxygen concentrator will sound a loud alarm (the same test alarm you hear when you first turn on the concentrator) whenever the power to it is interrupted.
The chamber will begin to deflate slowly, and at that point you would simply turn the valve toward "deflate" as usual to end the dive.
Jolley...If you're not using a humidifier with your concentrator, there is really no reason to switch out the tubing that connects to your concentrator unless you see moisture inside, or the tubing becomes stiff over time.
The same goes for the food-grade tubing that attaches to your compressor.
Changing the tubing more often is more of a concern for people with medical conditions that require use of their concentrator 24/7 (and are using long tubing which begins to tangle as it gets older), and/or when using with a humidifier bottle.
Posts: 2079 | From Earth | Registered: Jul 2013
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posted
Bryan, I have had the power go out while diving. You will not run out of air in the short time it takes to decompress. I take my time...about 8 to 10 minutes of decompression.
I do recommend that you pinch the O2 supply line so the concentrator doesn't get damaged by the back pressure.
How many volt/amps is your Uninterruptible Power Supply?
Posts: 564 | From NW Arkansas | Registered: May 2003
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It will run my compressor for 20 minutes. It doesn't like the concentrator at all and won't run it, too much power.
I've been taking 20+ minutes to compress and decompress due to ongoing sinus issues, so I like having a little extra time if the power goes out. But, I'm a beginner, so this is just my gut feeling for the moment.
Posts: 123 | From Tahoe | Registered: Oct 2016
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posted
Thanks Bryan, that's the UPS I run in my computer room. Good to know it will handle the compressor!
Have you tried my suggestion of using mullein oil (sometimes mixed with GSE) drops in your ears a couple of times a day to allow you to clear more easily. It's a cheap fix if it works.
Posts: 564 | From NW Arkansas | Registered: May 2003
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
quote:Originally posted by Digby: ...I do recommend that you pinch the O2 supply line so the concentrator doesn't get damaged by the back pressure...
Great advice!
Posts: 2079 | From Earth | Registered: Jul 2013
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posted
You people ROCK! This is the best team on Lyme Net and I am completely objective
Thank you for the info. on the decompression in the event of a storm. I love the pinching the O2 Digby and the backup power, Bryan. Really, you all are tops.
Digby, I am going to get my hands on some of that mullein oil mixed with GSE a couple of times a day.... That may really help me. I have the sinus issues too.
Thanks Team! You all rock! Jolley, so good to see you here my Solace twin... I hope things are still going well. I think so far so good... I am impressed.... Let's just say that. I am a little afraid to jinx myself.... BUT PRAISE GOD above, Phoiph and TEAM O2..... This Charleston girl is doing much better!
Thinking of you all and wishing you a wonderful weekend!
Posts: 859 | From Southeast | Registered: Mar 2011
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I definitely had some major herxing at first-after the honeymoon- but gosh it seems to be the first thing to nail the progression in my knees. Thus, I am very encouraged.
I will say that I am dealing with a lot of emotions seemingly but it appears I am able to process things in a more healthy manner but I have been weepy of late. It is as if I am critically aware of the moments I've missed because the old me seems to be coming back. Honestly, I never thought I'd see this day! Heck, it's no wonder I'm weepy! I'm very thankful to Phoiph, Peimomma and this group! Thanks seems so inadequate. I am grateful beyond measure! Posts: 859 | From Southeast | Registered: Mar 2011
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Hi willbeatthis...
The emotional reaction is a common piece of this mHBOT "journey".
In my experience, it is an important part of the healing process, and will ebb and flow as the layers are traversed.
I found that I revisited many phases in my life that I thought were "ancient history".
The good news was that these phases seemed to pass quickly and resolve on their own without much thought or effort on my part, as long as I didn't try too hard to figure them out.
Right now you are deep in the process, but I am certain that the sadness about the "missed times" you are currently feeling will eventually be replaced by the sheer joy of wellbeing...
Posts: 2079 | From Earth | Registered: Jul 2013
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posted
Thanks so much, Phoiph! I do feel deep in the process right now and profoundly grateful. If someone broke into my home- I'd say take it all but please leave the mhbot! Funny how I cannot imagine not having my Solace! Thank you for the continued support and encouragement!
Great to hear HW88! I think you will be thrilled you did this!
Real quick- something to note- on the decompression valve watch that the cloth of your cover doesn't get caught in there- somehow that happened with mine today- it scared me as the valve would not turn and I was inside. Simple enough- got the piece of thread out and put tape over that area of the cover. Love a simple fix! Just FYI! Hugs all!
Posts: 859 | From Southeast | Registered: Mar 2011
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Willbeatthis...
Thanks for mentioning this. I never brought it up because I thought it was just a quirk with my own chamber cover.
The chamber cover does have a protective plastic piece sewn in where the valve rubs against it, but if the threads there begin to fray and unravel, they can wind around the valve and prevent it from turning.
As you mentioned, (Duct) tape is an easy fix.
Posts: 2079 | From Earth | Registered: Jul 2013
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