LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Mild Hyperbaric Treatment (Page 74)

 - UBBFriend: Email this page to someone!   This topic comprises 91 pages: 1  2  3  ...  71  72  73  74  75  76  77  ...  89  90  91   
Author Topic: Mild Hyperbaric Treatment
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238

Icon 1 posted      Profile for Phoiph     Send New Private Message       Edit/Delete Post   Reply With Quote 
Current clinical trials on HBOT and Covid19:

https://clinicaltrials.gov/ct2/show/NCT04332081

Posts: 2072 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
Kaibyrd
LymeNet Contributor
Member # 45606

Icon 1 posted      Profile for Kaibyrd     Send New Private Message       Edit/Delete Post   Reply With Quote 
Wonderful!

--------------------
KB

Posts: 176 | From Northern VA | Registered: Apr 2015  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am so grateful to have the mHBOT chamber during these difficult times. It is so good to hear that mHBOT may have helped someone with COVID19. I wish I could find a recent study that showed 1.3 ATA was the best atmospheric pressure to be used for COVID patients, but I am unable to find it. I believe it was a Russian study.
Posts: 2387 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
Here is some info on it. https://www.youtube.com/watch?v=1iGZUA9NT_k&feature=youtu.be&fbclid=IwAR0i8aqIazd3WiFBYjRL2Kp8FG-9_bWkH6IvL3tdvN__j94Y8k0ZC_6XMUM
Posts: 2387 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238

Icon 1 posted      Profile for Phoiph     Send New Private Message       Edit/Delete Post   Reply With Quote 
Brilliant idea (not the first time proposed) to use idle passenger and military jets as mass hyperbaric units:

https://youtu.be/SWCHDuUQHSM

Posts: 2072 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
Hominahomina
LymeNet Contributor
Member # 50825

Icon 1 posted      Profile for Hominahomina     Send New Private Message       Edit/Delete Post   Reply With Quote 
Cass A
mHBOT increases my tinnitus
Not sure why and even if it is really tinnitus
It's not a ringing of the ears but more of a rush sound (Not the band Rush)

Posts: 261 | From California | Registered: Sep 2017  |  IP: Logged | Report this post to a Moderator
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238

Icon 1 posted      Profile for Phoiph     Send New Private Message       Edit/Delete Post   Reply With Quote 
Homina,

Here's a theory for you:

Taking in supplemental oxygen (even without being used with HBOT) is temporarily vaso-constrictive Vaso-constriction has been linked to tinnitus. (I have experienced this temporarily on a few occasions when I have stayed in the chamber too long due to sleeping through my alarm).

It sounds counterintuitive, but when oxygen is used with mHBOT, it is still vaso-constrictive (which is one of the reasons it reduces inflammation), but even so, more oxygen will reach the tissues better due to the pressure. In fact, HBOT has been successful in treating tinnitus over the long term.

So, it may be that even though you might experience heightened tinnitus temporarily after a dive, it may be helping the overall condition over the long term.

Posts: 2072 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
Hominahomina
LymeNet Contributor
Member # 50825

Icon 1 posted      Profile for Hominahomina     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Phoiph:
Homina,

Here's a theory for you:

Taking in supplemental oxygen (even without being used with HBOT) is temporarily vaso-constrictive Vaso-constriction has been linked to tinnitus. (I have experienced this temporarily on a few occasions when I have stayed in the chamber too long due to sleeping through my alarm).

It sounds counterintuitive, but when oxygen is used with mHBOT, it is still vaso-constrictive (which is one of the reasons it reduces inflammation), but even so, more oxygen will reach the tissues better due to the pressure. In fact, HBOT has been successful in treating tinnitus over the long term.

So, it may be that even though you might experience heightened tinnitus temporarily after a dive, it may be helping the overall condition over the long term.

Thanks
Cure it over the long run? Possibly

I don't know what you mean by temporary but my tinnitus or whatever it is doesn't go away after an hour or two If I dive regularly it sticks around 24/7 and it's loud
If I stop diving for a week or two it will turn down gradually slowly

I am going from memory

Posts: 261 | From California | Registered: Sep 2017  |  IP: Logged | Report this post to a Moderator
Cass A
Frequent Contributor (1K+ posts)
Member # 11134

Icon 1 posted      Profile for Cass A     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi, fellow divers!

I'm checking in at this point. I've done about 35 dives total. I had some improvement early on, but then the leg cramps started getting worse and my tinnitus really got bad.

So, looking at when things were improving, it was when I was at full pressure for an hour, but no mask. So, I've backed down to that.

I've decided now to increase the gradient when I'm no longer seeing an improvement instead of pushing until things get worse.

Two other notes: I've found using a saline nasal spray about 30 minutes before the dive to really clean out the sinuses and then putting a bit of olive oil in my ears helps to make the pressure transition smoother and faster.

I appreciate the data on tinnitus just posted here, too!

I found an internet program that supposedly fixes tinnitus, so I'm doing that, also. We'll see how that goes. If it helps, I'll post that data, and then anyone wishing to try it can PM me.

Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi Cass A, I tend to change things up a bit like you when mHBOT is no longer helping the way it had been or when I am developing new symptoms. Sometimes I skip a day as well.

I hadn't tried the olive oil, but do sometimes use a nasal spray such as Clear X to clear my sinuses before diving too. A half hour or more before my dive is probably best.

I know if I don't give myself enough time building up to pressure (or down) that my T is definitely worse following my dive. When I am trying to adjust to the air pressure changes, I tend to do a lot of wide, deep yawning. I notice that some of the yawns result in my hearing the compressor and concentrator noise much louder, so I can tell I opened up the Eustachian tubes!

Posts: 2387 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
Cass A
Frequent Contributor (1K+ posts)
Member # 11134

Icon 1 posted      Profile for Cass A     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi, dbpei,

Thanks for the notes and the advice.

Holding at full pressure and no mask for now.

Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238

Icon 1 posted      Profile for Phoiph     Send New Private Message       Edit/Delete Post   Reply With Quote 
https://carolinefifemd.com/2020/05/04/keeping-it-real-hbot-in-a-tyson-covid-19-outbreak/

Physician treats Covid19 patient (Tyson employee) with HBOT

Posts: 2072 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238

Icon 1 posted      Profile for Phoiph     Send New Private Message       Edit/Delete Post   Reply With Quote 
Cass A,

Remind me, are you taking supplemental magnesium for the leg cramping? What kind?

How about liquid minerals added to water?

Also, you must remember to increase your water intake with mHBOT.

Posts: 2072 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
Gabbysson
Junior Member
Member # 52061

Icon 1 posted      Profile for Gabbysson     Send New Private Message       Edit/Delete Post   Reply With Quote 
Just checking in. I began diving in January this year and have now completed 108 dives begining at 60 minutes and working up to 80 minutes now.

My lyme symptoms have been primarily severe joint pain for which no drug or supplement has been effective at treating.

My experience with hbot has been all positive, not dramatically so, in fact frustratingly slow but nevertheless positive.

My first encouragement came in the first couple of weeks. My CRP blood test which had been in the 60's (normal is less than 1) plummeted to about 4. I was ready to be completely healed in a month.

Of course it didn't work out that way. I began what has been a slow slog where I gain a little better range of motion or a slight but definitely noticeable reduction in pain from week to week.

I regularly think I've recovered more than I have and overdue my exercise or regular life activity. Thankfully it only takes a couple days to recover and get back on the lymie slog.

I'm grateful for God's grace in teaching me patience and appreciation for true value in life.

Posts: 5 | From Virginia | Registered: Dec 2019  |  IP: Logged | Report this post to a Moderator
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238

Icon 1 posted      Profile for Phoiph     Send New Private Message       Edit/Delete Post   Reply With Quote 
Gabbysson,

This sounds like a very positive report for 3.5 months in; 2 steps forward, 1 step back, but gaining ground slowly.

True healing takes time...and it sounds like you have the patience to be in it for the duration. Good for you!

Posts: 2072 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
Good luck Gabbyson! I started around the same time as you and am also on my 108th dive! I only dive for 60 minutes at 1.3 pressure but take about another half hour compressing and decompressing due to sensitive ears.

My symptoms are more neurological (mostly my neck up) than yours, and like you, progress has been slow, but in the right direction for the most part. There is nothing else that I have tried that has helped as much as mHBOT over the last decade.

I have had a setback recently with Covid creating a lot of anxiety that may have resulted in a flare of my symptoms, but I am thankful to have my chamber! I was tested for the Covid virus and happy to report that my test was negative. So I think it was likely a flare for me.

Best of luck to you and I'm glad you shared your story!

Posts: 2387 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
Gabbysson
Junior Member
Member # 52061

Icon 1 posted      Profile for Gabbysson     Send New Private Message       Edit/Delete Post   Reply With Quote 
I was recently reading about exercise with oxygen therapy (ewot). Once one is healthy enough to exercise normally, it sounds like a good option to continue to use oxygen therapeutically.

Does anyone have experience with ewot?

Posts: 5 | From Virginia | Registered: Dec 2019  |  IP: Logged | Report this post to a Moderator
Hominahomina
LymeNet Contributor
Member # 50825

Icon 1 posted      Profile for Hominahomina     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Gabbysson:
I was recently reading about exercise with oxygen therapy (ewot). Once one is healthy enough to exercise normally, it sounds like a good option to continue to use oxygen therapeutically.

Does anyone have experience with ewot?

I do not but my understanding is it is not as good as HBOT because it does not saturate the body with oxygen as well.

Couple questions
Do you have any bad reactions with 80 minute dives what is CRP and what does it have to do with Lyme? Thanks

Posts: 261 | From California | Registered: Sep 2017  |  IP: Logged | Report this post to a Moderator
Gabbysson
Junior Member
Member # 52061

Icon 1 posted      Profile for Gabbysson     Send New Private Message       Edit/Delete Post   Reply With Quote 
CRP is a blood test for general body inflammation. Often used to assist in diagnosing autoimmune diseases. It doesn’t indicate any specific body location of the inflammation.

It was the only indication other than my Lyme WB that suggested I had any health problem. It’s elevated level for me kept the doctors from declaring me nuts when they found no reason for my joint pain.

I have read that CRP is commonly high with Lyme, something like 80%, but not necessarily and of course a high CRP is not necessarily an indication of Lyme.

After I did the ramp up to 60 minutes with full oxygen at the beginning, I did that level for 30 days with only positive response.

Then I began increasing 5 minutes at a time for a couple weeks to assess the effects of that dosage. I felt fine until I went passed 75 minutes when I had a little difficulty sleeping.

I went back to 75 minutes and stayed there comfortably for about 2 months. I only recently moved up to 80 minutes which seems fine for now.

Posts: 5 | From Virginia | Registered: Dec 2019  |  IP: Logged | Report this post to a Moderator
carbokitty
LymeNet Contributor
Member # 40537

Icon 1 posted      Profile for carbokitty     Send New Private Message       Edit/Delete Post   Reply With Quote 
Congratulations on your progressive (slow) positive improvements, gabbysson!
Interesting to read about your initial issues with 75 plus minutes and now being able to increase again.
I'm right at 290 dives. Last year, in July, I tried to bump it up to 90 minutes but after a week, develop pain on my right side, around the liver/gallbladder. Taking a 4 day break resolved that and I've stuck with 60 minutes. Maybe I can slowly increase a bit.

Carbokitty

Posts: 118 | From WI | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
kgg
Frequent Contributor (1K+ posts)
Member # 5867

Icon 1 posted      Profile for kgg   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Gabbysson. thanks for the encouraging report! CRP in the 60's! I thought my son's was high at 27. Thank you for including that info. Long may your improvement continue!!
Posts: 1844 | From Maine | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
carbokitty
LymeNet Contributor
Member # 40537

Icon 1 posted      Profile for carbokitty     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi everyone! I hope you are doing well, staying well and safe during cover-19.
I have just reached 302 dives. I've been diving just over a year at 1.3 ATA and with oxygen. I initially started due to acute mold exposure (it helped dramatically!) and quickly discovered that it resolved my chronic diarrhea to completely formed stools after 3 dives.
My stools have been up and down over the last year but mostly good.

Last week, I started having tenesmus (spasming of my anus mostly). When it occurred, it would occur for awhile about every 30 seconds. I noticed it mostly when I laid down to sleep. It got a little more intense and further up my large intestine. It can be quite distracting and distressing.

I'm just wondering if anyone else had this as a herx? I'm trying to decide if this is part of the disease process or part of the healing process.

Thanks for reading and any experience you may have in this area.

Carbokitty

Posts: 118 | From WI | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
kgg
Frequent Contributor (1K+ posts)
Member # 5867

Icon 1 posted      Profile for kgg   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi, Carbokitty. I have not had that. It is hard sometimes to tell between a herx and the disease process. I don't want to sound cliche-ish. But sometimes time will tell. For me that has been the case.
Posts: 1844 | From Maine | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
carbokitty
LymeNet Contributor
Member # 40537

Icon 1 posted      Profile for carbokitty     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi all~
Me again. The spasming resolved this week-finally and gratefully.
I know this has been discussed many times but it's my first time with a plugged ear. Just the right side. I would say it's been at least a week, although it was on and off before that for at least another week.
I have finally given in and stopped diving. I'm wondering if others have had a similar issue, how long it took to resolve and how you knew it was safe to dive again.
I started with some homeopathic drops for ear wax and that did very little. Then I started using a combo drops of mullein and garlic that is used commonly for ear infections (Friday I woke with pain that radiated down my jaw so I figured there was something brewing. That has resolved since starting the drops).
I have earplanes ordered and will try that once I start back up. Again, this was during over 300 dives that these symptoms started.

Posts: 118 | From WI | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
Are you sure it is not some wax clogging your ear? The only way to know for sure would be to go to the doc (I prefer ENT for this) and have him/her look inside and clean it out. Plus if it is something more serious, the doc could advise about treatment, as well as when it is safe to resume mHBOT.

This must be so frustrating after having done so many dives without this problem. It is one of my worst fears that ear problems would get in the way of diving. Good luck to you and please keep us posted!

Posts: 2387 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
carbokitty
LymeNet Contributor
Member # 40537

Icon 1 posted      Profile for carbokitty     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks dbpei. Almost even as I wrote that, I started getting some relief. It's not 100% and I definitely feels some draining as I sleep (and stay with that ear down).
As I mentioned, I had tried some homeopathic drops that are to work on ear wax with no noticeable benefit.
The combination now of the mullein and garlic drops and I used a little hydrogen peroxide as well and not diving seems to be making the difference. I guess I will keep paying attention and stay out of the chamber until I feel clear (meaning the right feels as clear as the left).
My Earplanes arrived, so I will use those when I dive again.
Yes, frustrating! And so unexpected, having not had issues previously. But one never knows whether this is part of the healing process or what. Helps me work on my patience-lol.

Have a good day and good dive everyone!
Carbokitty

Posts: 118 | From WI | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm glad you are getting some relief, carbokitty! It will be good to know if the Earplanes work. I used to listen to head phones during my entire dive and then read somewhere not to put anything in your ears to obstruct them during your dive, especially when compressing and decompressing, so it is confusing to know what is safe to use!

It is good to trust your instincts for this stuff, I am sure! Happy diving!

Posts: 2387 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
kgg
Frequent Contributor (1K+ posts)
Member # 5867

Icon 1 posted      Profile for kgg   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Carbokitty, so glad that you have had some relief of the previous symptom! I have found this chiropractor really helpful with some techniques that he uses for clearing Eustachian tubes. I will post a search on his youtube site for his list of Eustachian tube videos. If these techniques don't work I would consider having someone look into your ears.

https://www.youtube.com/user/motivationaldoc/search?query=Eustacian+tubes

Posts: 1844 | From Maine | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Cass A
Frequent Contributor (1K+ posts)
Member # 11134

Icon 1 posted      Profile for Cass A     Send New Private Message       Edit/Delete Post   Reply With Quote 
Regarding ears, I was having trouble getting one ear to completely come back to "normal" after a dive. Phoiph recommended acupressure points that are easy to find on the Internet.

Here's a link: https://www.modernreflexology.com/ear-acupressure-points-to-treat-earache-and-tinnitus/

These worked for me.

To get my ears to go through the compression and decompression more rapidly and with less problems, I have used some ear drops that are mainly olive oil with small amounts of essential oils. I think the olive oil is the key---just lubricates the inside of the ears.

Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Cass A
Frequent Contributor (1K+ posts)
Member # 11134

Icon 1 posted      Profile for Cass A     Send New Private Message       Edit/Delete Post   Reply With Quote 
Reporting in!

I'm now at just over 50 dives, an hour at pressure and now with oxygen added into the chamber but no mask.

I had a very bad flare up of 40-year-old back problems that I thought had fully resolved. I could hardly walk at all and was crying in pain. Sitting or standing weren't much better.

I didn't dive for a few days---I wouldn't have been able to get in or out of the chamber due to pain.

Phoiph talked to me on the phone after I emailed her, and convinced me to continue. Well, the pain has backed off and I can now walk OK, just not sit or stand for very long.

Hope this is over soon!!! When I had it from injuries decades ago, it took 6 months to be able to be out of bed and back to work!

Thanks again to Phoiph.

Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
Cass A - so sorry to hear about your back problems returning after all of that time. I wonder if an old injury reactivating is a common occurrence for those who do mHBOT. I have had a few old pains return, but nothing as bad as you are describing.

I hope you continue to improve and will get past this. I wonder if you could try repositioning your chamber if there is a way to get in and out that does not cause so much pain for you. (maybe try zipper on side instead of top?) Good luck and let us know how you are doing.

Posts: 2387 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
carbokitty
LymeNet Contributor
Member # 40537

Icon 1 posted      Profile for carbokitty     Send New Private Message       Edit/Delete Post   Reply With Quote 
Cass: Thanks for the ear unplugging suggestions. (Ironically, I'm an acupuncturist! I've been needling myself, but not as a preventive-only after the fact). I use a combination of mullein and garlic oil-since this has happened.
I think the earplanes are working. That right ear still doesn't completely open up right away but it never did. It just didn't plug up like it did 2 weeks ago.

I'm so sorry, Cass to hear about your back! A few years prior to even knowing about mHBOT, I had a bad flare up of back pain. Very odd situation, it seemed to be due to taking a probiotic which caused hugh die off and leaky gut-which they resulting in adhesions. I couldn't sit or stand. Mostly just lay down on a mattress that was on the floor. It was an amazing physical therapist that helped me recover from that. I've never had a problem since.

I agree with dbpei's suggestion to turn your chamber sideways. Simple enough if you're not alone and someone can do that for you. When I broke my foot this winter, the clinic I went to had their chamber on the side. With help, I could get in and out.
At the Airbnb we were staying at, there were 2 bedrooms. We positioned the chamber next to the bed in the spare bedroom so that I could enter from the side of the bed. (zipper on top). That was helpful. It's all hard when you're in pain though.

Hope you are feeling better very soon!

Carbokitty

Posts: 118 | From WI | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
S13
LymeNet Contributor
Member # 42830

Icon 1 posted      Profile for S13     Send New Private Message       Edit/Delete Post   Reply With Quote 
Oh wow this topic is still alive! [Smile]
Havent read the last years of it, so please excuse me... I was one of the ealier ones in 2013 that started the MHBOT therapy.

Gosh it has been almost 7 years now and im still using it on an almost daily basis. Thats like over 2000 hours i suppose!?

I guess a lot of you would like to know if this has been the magic bullet for me? And to that I would say that's a difficult question to answer! It has been very instrumental in my healing process, but mostly because its doing a fair job in keeping the lyme suppressed, or at least operating at a lower level. At the same time it isnt as much of a trigger for my MCAS, which in hindsight seems to be a very important factor. Many drugs (antibiotics) were big triggers for my MCAS and because of that werent helping very much.
However i would say that MHBOT is not as powerful in killing lyme as antibiotics. But if you are sensitive like me, those antibiotics can often do more harm than good. I learned that the hard way.

Getting MCAS under control while having lyme obviously took more than just MHBOT. Too much to write about here. And im still struggling with some of it. Especially now during the whole pandemic where i had to switch medication and that resulted in a few bad reactions. So my healing path is now again somewhat compromised.

However i didnt want to withhold this from you. I do feel ive reached a lot in the last few years, more than i was dreaming of.
I guess you could say this was my victory moment last year where i was able to do a 3000ft climb on my MTB:

 -

And no, that isnt an ebike! [Smile]
This is in Spain near Gerona (Santuari de la Mare de Déu del Mont).
Took a lot of hard work and im hoping i will be able to continue doing things like this. But there are no guarantees with lyme and MCAS sadly so we will just have to wait and see what the future brings.

Anyway, just wanted to share that with you. Good luck to all of you!

Posts: 387 | From The Netherlands | Registered: Nov 2013  |  IP: Logged | Report this post to a Moderator
Kaibyrd
LymeNet Contributor
Member # 45606

Icon 1 posted      Profile for Kaibyrd     Send New Private Message       Edit/Delete Post   Reply With Quote 
Awesome post S13! I’m so happy to see you accomplish something so amazing. Awesome job!

What is MCAS?

Abx only made things worse for me too. I’ve actually had to stop diving as well since it was also making me worse but I’m working with a doctor Phoiph referred me to, to find out what’s going on at a metabolic and DNA level. The test are back and I have a Skype meeting with him tomorrow. Emotions are high but there’s hope now.

I have improved since stopping mHBOT but it was basically an effort of will. My PMC told me that the recent increase in symptoms could be from menopause and since hormone therapy didn’t work, exercise is the only alternative. So I’ve been pushing myself to get moving. My husband has a Nordictrack with iFit that allows you to immerse yourself in the workout video you choose. I love hiking and found several low impact walks that I can actually do. I think the motivation of going on a hike in my own home has helped tremendously.

I will be going back to diving but right now I just feel as if my body can’t detox correctly, (among other issues). Hopefully I will find out why and how to fix that tomorrow.

--------------------
KB

Posts: 176 | From Northern VA | Registered: Apr 2015  |  IP: Logged | Report this post to a Moderator
S13
LymeNet Contributor
Member # 42830

Icon 1 posted      Profile for S13     Send New Private Message       Edit/Delete Post   Reply With Quote 
hey Kaibyrd! Thank you very much [Smile]

MCAS is short for Mast Cell Activation Syndrome. Its where certain cells of your immune system go haywire with only the slightest of disturbance. Mast cells are basically the gatekeepers of your body. They guard your body for foreign things or anything unusual. Its a lot to explain, but know that many hypersensitive lyme patients actually also suffer from MCAS. And lyme is known to trigger mast cells anyway, so even if you dont have a genetic disposition towards MCAS you could still be suffering from the same symptoms caused by your mast cells if you have lyme.

Anyway, if you are interested, ive learned a lot from the low histamine chef Yasmina: https://healinghistamine.com/about-me/
I know she didnt have lyme disease, so her healing strategy was obviously a bit different, but its still very informative.


If there is one thing ive learned from MHBOT, its that even oxidative stress can trigger mast cells and make you feel worse. An excess of oxidative stress is never a good thing. MHBOT should be a short burst of stress while your own cells & proteins are protected by antioxidants.

Ive learned the hard way that too much isnt a good thing. And with MHBOT pushing it to the max isnt necessary anyway. I find that pressures higher than 1.3ATA are counterproductive. Also, more than 40 minutes per day is counterproductive in my case.
I take a TON of antioxidants nowadays and they dont make the therapy less effective. In fact because they minimize the side effects, the therapy becomes more effective.
I would say that there is a lower limit though. Too little pressure and the lyme isnt being suppressed any more. I noticed that when traveling to elevation. Above 3000ft elevation the 1.3ATA wasnt sufficient any more and i got some of my typical lyme symptoms back (joint pain). I had to increase to 1.4ATA and things calmed down again.

At 1.3ATA the MHBOT doesnt seem to kill lyme right away. It suppresses it only. But for sensitive people that could be the better approach. Perhaps if you would be able to handle 2.5ATA (like in hospital) you could actually kill the lyme, but for many that is too much to handle.

BTW, when i talk about antioxidants i obviously mean Vitamin C (good for mast cell stabilization anyway) and Ascorbyl Palmitate. But even more so NADH and SOD.
-> NADH converts to NADPH and helps to recycle glutathione.
-> SOD, or Super-Oxide Dismutase, is the other master antioxidant in your body that deals with superoxide.
I know these antioxidant supplements are not that widely used by lyme patients, but they made all the difference for me by reducing the side effects of my mhbot treatment and keeping my mast cells happy [Smile]
And when your mast cells are happy your immune system will function a lot more effective thus helping to combat the lyme bacteria.


I sure hope you can get your excercise regime on track. Again dont overdo it. Low impact is they way to go!
Also im not sure what type of detoxing you are doing right now? Cholestyramine has been a lifesaver for me (though recently i have been having issues with different manufacturers and reacting to excipients badly).

I wish you good luck with your skype meeting tomorrow. Hope the tests reveal something.

Btw is Phoiph still hanging around here?

Posts: 387 | From The Netherlands | Registered: Nov 2013  |  IP: Logged | Report this post to a Moderator
Kaibyrd
LymeNet Contributor
Member # 45606

Icon 1 posted      Profile for Kaibyrd     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks for the info S13.

I remember my Lyme doctor being concerned about mast cells and putting me on an antihistamine while I was on abx in 2015. Funny thing was, the antihistamines made my sinus issues much worse. 🤷🏻‍♀️

I’ll try to remember to ask my doc tomorrow about what you’ve mentioned above if I get the chance. He likes to talk though. I was exhausted after our last Skype meeting.

I’ve tried many types of detox but most often it was far infrared sauna, Epsom salt baths and watching my diet, eating foods that support detox. Nothing seemed to help. I have a lot of inflammation in the gut that needs to be addressed after all the abx so we’ll see what he’s found the cause could be. I’m off dairy but I’m sure I’ll be taking lots more foods out of my diet. That’s always the hardest part for me. He will be recommending supplements based on my tests results. I’m interested to see what those are.

Yes Phoiph is still here and still helping lots of people. 😊

Take care!

--------------------
KB

Posts: 176 | From Northern VA | Registered: Apr 2015  |  IP: Logged | Report this post to a Moderator
S13
LymeNet Contributor
Member # 42830

Icon 1 posted      Profile for S13     Send New Private Message       Edit/Delete Post   Reply With Quote 
I never went the antihistamine route. Learning from Yasmina (the low histamine chef), antihistamines can actually be detrimental to your mast cells, eventually making the situation worse. Ive learned that there are more natural ways to combat histamine and prevent mast cells from activating. Its not an easy process though... A lot of trial and error to find your individual needs (eliminating things you are sensitive to, and including things that make your immune system more stable).

The gut is probably where most problems are for many. Mine as well. Mast cells are highly concentrated in the gut. Getting the gut under control has been my main priority over the last years. Nalcrom is the only medication i use right now, other than cholestyramine. They are both helpful in getting the gut inflammation down. Once the gut is functioning better, your entire body will work better. But its easier said than done if you have lyme obviously.

Ah the infrared sauna! I had one of those! Always felt horrible in and after it [Wink]
Eventually i gave up on the idea that it was detoxing me. I now know im just sensitive to heat and it triggers a mast cell flare. So i just avoid extreme temperatures.

Its actually nothing new for me, even before i got my lyme 8 years a go i remember being sensitive to lots of things. As a young kid i would get attacks of nausea and weakness from just being out in the sun. And parfums would almost choke me. Then again there is a clear genetic trail from my mothers side of the family that shows these problems, so for me there are definitely genes that add to the whole MCAS situation. But im not assuming thats true for everyone, or at least every sensitive lyme patient out there. We are all different in that way.

Well, im interested in what your doc recommends, so please let us know!

Posts: 387 | From The Netherlands | Registered: Nov 2013  |  IP: Logged | Report this post to a Moderator
carbokitty
LymeNet Contributor
Member # 40537

Icon 1 posted      Profile for carbokitty     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi S13! Thank you for your post and update. Congratulations on the climb! Very exciting to be able to live life again and go to that length. I really appreciate you sharing your joy and triumph.

Interesting that you settled on 40 min dives vs 60. What were your symptoms at 60 min that you don't have at 40 min?

When I first started at a clinic (now 315 dives in since April 2019), the first was 20 min. Then I did 40 min dives for at least the first 3 months (did my first in Jan 2019 but didn't get up to 60 min until sometime in March or April and only then started recording my dive #). And only since I've had my chamber do I dive daily. Previously was constrained by my schedule and the clinic's schedule. Of course cost was a factor also.

I don't tolerate Vit C (except lemon juice) due to gut issues. I do take SOD and catalase as part of my B12/tolate supplement.

Thanks for jumping back into the conversation! Always good to learn from others.

Kaibyrd, have a good appointment today. Will also be interested to hear what you learn further!

All the best,
Carbokitty

Posts: 118 | From WI | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
S13
LymeNet Contributor
Member # 42830

Icon 1 posted      Profile for S13     Send New Private Message       Edit/Delete Post   Reply With Quote 
So 40 minutes basically gave me the same lyme suppressing results as 60 minutes. And i dont even use supplemental oxygen any more.
More than 40 minutes and it would aggrevate some of my mast cell symptoms, such as restless legs, fatigue, heart palpitations/rhythm and depression.

So at a certain point i realized that more isnt better and the less i can trigger my mast cells while still keeping lyme suppressing effects, the better.

Right now with my mast cells better under control by diet and supplements i could actually do longer dives without too much problems, but i just feel it isnt necessary.

For vitamin C i only use pure powder ascorbic acid. I think some mcas patients report difficulties with vitamin c derived from corn, but im not sure if that is the problem for you?

Posts: 387 | From The Netherlands | Registered: Nov 2013  |  IP: Logged | Report this post to a Moderator
Hominahomina
LymeNet Contributor
Member # 50825

Icon 1 posted      Profile for Hominahomina     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hello All

Couple questions

How many here use Nicotinamide Riboside do you like it?

Also

How many use an Air Purifier how do you like it and what brand do you use?

Thanks

Posts: 261 | From California | Registered: Sep 2017  |  IP: Logged | Report this post to a Moderator
carbokitty
LymeNet Contributor
Member # 40537

Icon 1 posted      Profile for carbokitty     Send New Private Message       Edit/Delete Post   Reply With Quote 
Homina:

I don't use Nicotinamide Riboside so I can't comment.

I have purchased a number of Honeywell air purifiers from Target over the years and I've been happy with them. The 2 filters can be pricey and there's that ongoing cost-but the cost of the purifier itself wasn't bad. (don't remember now but less than $200 for sure). I currently have 3 in different rooms. One of the things I actually like about it that other's may not is it creates a bit of white noise and masks some of the noise of my husband coming to bed or his TV watching on another floor when I've gone to bed already.

We have 2 cats and we've had mold issues and I feel these have helped.

There has been a lot of recent discussion within my profession about air purifiers with uv light to help get rid of covid. I've considered but have not purchased.

Carbokitty

Posts: 118 | From WI | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
Digby
LymeNet Contributor
Member # 3888

Icon 1 posted      Profile for Digby     Send New Private Message       Edit/Delete Post   Reply With Quote 
Homina, I have used NR as well as doing NAD infusions. Neither has been worth the cost for me.

I use a Healthmate air purifier. They are expensive but mine has lasted 15 years with cartridge replacement ~ every 4 years. It is on 24/7 and is still going strong!

Posts: 564 | From NW Arkansas | Registered: May 2003  |  IP: Logged | Report this post to a Moderator
Hominahomina
LymeNet Contributor
Member # 50825

Icon 1 posted      Profile for Hominahomina     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks Carbo and Digby
Digby do you dive with purified air ?
If so how do you do it?

Posts: 261 | From California | Registered: Sep 2017  |  IP: Logged | Report this post to a Moderator
lymenotlite
LymeNet Contributor
Member # 33166

Icon 1 posted      Profile for lymenotlite     Send New Private Message       Edit/Delete Post   Reply With Quote 
There is a local doctor that uses IV cord blood stem cell therapy combined with NAD IV therapy, these both for 5 days. Anyone know how effective this might be? I have to wonder whether cord blood cells taken from another might have infectious problems.
Posts: 705 | From WA state | Registered: Jul 2011  |  IP: Logged | Report this post to a Moderator
Digby
LymeNet Contributor
Member # 3888

Icon 1 posted      Profile for Digby     Send New Private Message       Edit/Delete Post   Reply With Quote 
Homina, my chamber is in the room where the Healthmate is, so indirectly, yes.
Posts: 564 | From NW Arkansas | Registered: May 2003  |  IP: Logged | Report this post to a Moderator
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238

Icon 1 posted      Profile for Phoiph     Send New Private Message       Edit/Delete Post   Reply With Quote 
S13~

Hi, yes, I'm still here...

Thank you so much for sharing your experience. It looks like you've made amazing progress!

I'm very happy for you :)

Posts: 2072 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
S13
LymeNet Contributor
Member # 42830

Icon 1 posted      Profile for S13     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you Phoiph!
Good to see you are still providing support and help after all these years [Smile]

How is your tank holding up? Still doing the therapy?

Posts: 387 | From The Netherlands | Registered: Nov 2013  |  IP: Logged | Report this post to a Moderator
Hominahomina
LymeNet Contributor
Member # 50825

Icon 1 posted      Profile for Hominahomina     Send New Private Message       Edit/Delete Post   Reply With Quote 
S13
Can you answer a question or two
Do you think longer dives earlier in your mhbot protocol benefited you and now 40 minutes per dive maintains?

How much NADH what brand do you use what time of day and with or without food?
Does NADH affect your ability to sleep?

Coffee Enemas increase glutathione quite a bit but the glutathione levels drop pretty fast it seems due to stresses on the body so I am wondering if using NADH would help keep levels high during the day
Thanks

Posts: 261 | From California | Registered: Sep 2017  |  IP: Logged | Report this post to a Moderator
S13
LymeNet Contributor
Member # 42830

Icon 1 posted      Profile for S13     Send New Private Message       Edit/Delete Post   Reply With Quote 
Well no, i actually didnt start to improve until i lowered my oxidative stress. Which meant reducing mhbot time and increasing antioxidants. Early on when i was doing 1.5ATA i was actually doing worse.
And i still get that, if i overdo oxidative stress i get worse. Just finding that minimum suppressing effect of the mhbot and not any more gave me the best results. This has a lot to do with triggering my MCAS, so this might not apply to everyone.

For NADH I use the Enada Mojo twice a day. Sometimes the NOW foods NADH if i cant get the Enada.
No it doesnt affect my sleep at all. In fact i take it in the evening as well. But your mileage may vary.
I did not have much success with coffee enemas or glutathione in the past. Well, liposomal glutathione gave some positive effects, but it was just too damn expensive for the benefits. NADH and SOD while also not very cheap were much more helpful. Im sure this wont be the case for everyone however.
Oh yeah i forgot to mention i also use the gamma-tocopherol form of vitamin E. Gamma tocopherol can neutralize reactive nitrogen species. Nitrosative stress and oxidative stress often go hand in hand.

Posts: 387 | From The Netherlands | Registered: Nov 2013  |  IP: Logged | Report this post to a Moderator
Hominahomina
LymeNet Contributor
Member # 50825

Icon 1 posted      Profile for Hominahomina     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks S13 This is good to know I could try the NADH and SOD
NAD followed by a CE have provided me temporary relief from symptoms

Here is a question for the group

Have any of you tried cryotherapy for lyme and co infectiona or more specifically Bartonella ?

Posts: 261 | From California | Registered: Sep 2017  |  IP: Logged | Report this post to a Moderator
  This topic comprises 91 pages: 1  2  3  ...  71  72  73  74  75  76  77  ...  89  90  91   

Quick Reply
Message:

HTML is not enabled.
UBB Code� is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.