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» LymeNet Flash » Questions and Discussion » Medical Questions » Mild Hyperbaric Treatment (Page 23)

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Author Topic: Mild Hyperbaric Treatment
willbeatthis
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What an immense honor to start Page 23 of this incredible thread. The lives it has touched are too many to count.... the success stories too... too many to count but each and every one... like a star in the sky.... Help light OUR WAY FORWARD!

To Phoiph, who with immense selflessness, continues to share what saved her life. Tireless, with great compassion and care... She will walk beside you in this journey to see you to the other side. I don't know of a greater gift...

I am left without words and changed forever... Having caught a glimpse of my old life this morning (wellness), even for a fleeting moment, it was beyond all words.... I almost cried... This illness has a way of making you forget what those moments were like and that surviving is an achievement (and believe me, I am not saying it's not- I've done a lot of that).

Thank you, Phoiph, for holding out HOPE and a life raft, for me and for so many.... This one is for you...

https://www.youtube.com/watch?v=oofSnsGkops

With all the gratitude my heart can hold... And, to all that have come before and helped to light the way...I express my sincerest gratitude... It takes many stars to light the night sky.... SHINE ON...

[group hug]

[ 02-11-2017, 12:36 AM: Message edited by: willbeatthis ]

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Phoiph
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willbeatthis...

Awww...I don't know what to say. Thank you so much for your kind thoughts! I honestly don't deserve that much credit though...as it is a privilege and super rewarding to me to witness people's progress. (Let's see how you feel about me if/when things get rough...LOL...just kidding... [Smile] )

Kristine...I can so relate to your gut issues. I was there as well...the same 5-6 foods for over 5 years, and couldn't take supplements. Although you haven't made progress in that area yet, I am hopeful that continued mHBOT will help your gut, as it did mine.

If I understand this right, you are on dive 237, but 149 of those dives were working up to full protocol. So...for comparison, my gut was still very much healing at that time. I believe that if you stick with your GAPS and mHBOT, in time you will see more improvement.

About the PVC's. I haven't been able to find anything in the literature that oxygen or mHBOT would promote those (actually on the contrary), but if you feel it is having an effect, then you could back off until you can see your cardiologist on the 21st. That is only 10 days...so don't worry too much about taking that break from mHBOT at this point. It would also give you a chance to see if anything changes.

Also...you didn't mention if you have had your thyroid levels tested (complete panel) and/or are on thyroid meds...(as this can greatly affect PVC's)?

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kgg
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Kristine, I too, do not tolerate digestive enzymes or oral magnesium.

I am concerned about the PVCs. The amount. Whenever I get an appointment that feels like it is way out in the future, I ask to be put on the cancellation list. Many times, I will get in sooner that way.

It is also very common for people to wear a cardiac monitor and not have their heart act up while it is on. If that happens, many times they will wear it longer than just the 24 hours that is initially prescribed.

I have used the https://lymediseaseassociation.org/doctorsphysician referral system in the past. I don't know where you live. But you put in your zip code or town/state and check cardiologist. And it will come up with Lyme literate cardiac physicians in your area or nearest you.

Imho, there are symptoms you push through and things you don't. Your heart acting up is not one I would push through. If being the chamber irritates it. If this was me, I would not get in until I saw the cardiologist. Keep a chart or journal of how often you are getting them. Sometimes docs seeing charting of a symptom speaks louder to them than an oral report.

Lastly, my gut has been acting up. Both my PCP and naturopath suggested the low FODMAP diet. It is different that GAPS or paleo. I found out very quickly that is was the right diet for me as many of my gi symptoms quieted. I am now in the re-introduction phase, adding back in foods individually to see what I am reacting to. The hardest part of the diet is that you eliminate onions and garlic. Yup, I know. Every thing I eat had them in it. But when my gut quieted it was enough improvement to keep with it.

It is a diet out of Australia. The Monash university developed it. This is my favorite blog/web site for it: https://www.alittlebityummy.com/

Please keep us updated on how you are doing and what the doc has to say.

Best,
Karen

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Peimomma
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Update to my 2 year update😊

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.

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Kristine001
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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!

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Kristine001
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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.

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Monti
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Kristine001,

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

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Kristine001
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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.

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willbeatthis
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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 [Smile]

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 [Smile]

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!

[Smile]

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Phoiph
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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 [Smile]

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:

http://suzycohen.com/articles/cardiac-arrhythmias-may-be-caused-by-nutritional-deficiencies/

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...

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reminder
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Kristine,

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

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Monti
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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.

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kgg
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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.
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Monti
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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.
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Kristine001
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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.

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Digby
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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.

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kgg
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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?

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Kristine001
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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.

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Phoiph
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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?
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Kristine001
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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.

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Jolley
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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.

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Jolley
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Monti,

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.

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dan67
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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.
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willbeatthis
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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! [group hug]

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kgg
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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!

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