kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Thank you, Monti for the reminder to look at my diet. I am on a low FODMAP diet for IBS symptoms. I am slowly adding foods back in as I tolerate them. In addition I am diary free and gluten free. It is heavy in night shades. Perhaps that is causing the return of my knee pain.
Posts: 1856 | From Maine | Registered: Jun 2004
| IP: Logged |
posted
My wife has experienced some rapid heartbeat after MBOT. I found this article. https://www.ncbi.nlm.nih.gov/m/pubmed/6085526/ I am inclined to believe it is long duration hard shell but it is scary for her. Any thoughts?
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Jcarlnew, is she on any meds that have the side effect of a prolonged Q-T interval? For example zithromax or sometimes asthma meds.
I agree since it was written in 1984 I would assume it was a commercial deep dive it is referring to or actually diving. Since it is cited as Undersea Biomed Res.
Posts: 1856 | From Maine | Registered: Jun 2004
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Unfortunately, I couldn't find a link to the full article. Does anyone have access?
As mentioned, we would need to know more details about the type of 02 mixture breathed, depth, time etc.
Is she taking a good liquid magnesium and mineral supplement?
Posts: 2083 | From Earth | Registered: Jul 2013
| IP: Logged |
posted
Jcarlnew, the study you referenced suggests a lowering of heart rate and they say "prolonged" dives so it probably doesn't apply to an increased HR.
Does your wife have claustrophobia? Could it be mild anxiety? There are many possibilities.
Posts: 566 | From NW Arkansas | Registered: May 2003
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Sorry, I do not have full access.
Posts: 1856 | From Maine | Registered: Jun 2004
| IP: Logged |
posted
She does take magnesium and may need to add COQ10. I think she was no longer anxious until this began. I have a real good holistic cardiologist that we can discuss this with
posted
Hi Jcarl- I'm so sorry to hear this. I am glad you've got a good cardiologist to see. We will all be thinking of you all!
Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
posted
Willbeatthis, the fatigue, what I use to call "atomic fatigue" didn't even begin to get better until I completed a year of diving. I still have to take time every day to meditate or I have an afternoon crash but I recover after a night's sleep instead of weeks of suffering.
It's hard to tell if I'm still making improvements but then I never really could tell other than in retrospect. Ask me again in 2 months and I'll tell you if I'm better than I am now.
Posts: 566 | From NW Arkansas | Registered: May 2003
| IP: Logged |
posted
willbeatthis, thanks for asking. Actually right now I am really struggling, BUT... 2 steps forward, 1 leap back, right?
I built up my time and oxygen in the chamber. About 3 days after completely building up, my CRAZY insomnia took over again. The last few nights I've only had a few hours of sleep.
It is CRAZY!!! I actually think I would feel pretty good if it weren't for that, but my head is going crazy with pressure (feels like I only had 2 hrs of sleep.. blah), my quads go really weak when I don't get sleep. Anxiety shoots and I'm super shaky today.
It all points to Bart for me I think. SO, good news, mhbot is working because I'm herxing like crazy right now.
I think it's targeting my brain pretty darn good, which is awesome and hard at the same time.
I see my sleep dr. tomorrow, but honestly, when I get like this even heavy sleep drugs don't touch it. It is CRAZY!!!!
I'm going to back off the oxygen mask and just do the chamber for a while and see if it will calm down. THEN slowly add back in the oxygen.
I've been diving for a month now, so I feel like I built up pretty slowly, but I've always been VERY sensitive to new drugs and have always had to go slowly or half dose.
Oh how I wish I could sleep.....
hanging in here.... looking for the 2 steps forward. Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
| IP: Logged |
posted
oh and my shins are achey.... I really do think this is a crazy Bart herx or flare... hoping some good is happening somewhere in this craziness.
I was having some pretty good days. I'll get back there... hopefully even better.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
HW88, I am sorry things are hard right now. Not sleeping makes everything harder!! It sounds miserable. I took 3 months to ramp up. I know that is incredibly slow. But it was at a pace that I could tolerate. I am glad you are backing off on the oxygen mask. I was going to suggest a day or two off and see how you feel. I still do that occasionally and I am about 18 months into it now.
Hope the sleep doc can be of help. Hang in there!!
{{{Gentle hugs}}} Karen
Posts: 1856 | From Maine | Registered: Jun 2004
| IP: Logged |
posted
Thanks Karen. I thought a month was a pretty long time to ramp up, but I probably did it too fast for me.
How are you feeling these days being 18 mo. in? Mostly functional. I think I remember you had a surgery recently, right?
ugg, just looking for a bit of hope.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
HW88...
It occurred to me that I just passed the 5 year Lyme-free mark...thanks to mHBOT.
I hope that gives you encouragement and something to look forward to. The best is yet to come...
Posts: 2083 | From Earth | Registered: Jul 2013
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I love that line- the best is yet to come....
HW88, I am doing well. Mostly functional. Not able to work. I was better last summer before my appendix decided to be a problem. Lately, I am better every day. Thanks for asking!
Posts: 1856 | From Maine | Registered: Jun 2004
| IP: Logged |
posted
Thank you for the encouragement Phoiph! You're a gift to us all! Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Phioph, the thing I appreciate most about your 5 year mark is that you are still advocating for mHBO. You haven't left us in the dust with living a healthy life, too busy to be bothered. For that I will be eternally grateful.
Posts: 1856 | From Maine | Registered: Jun 2004
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Awww...willbeatthis and kgg, thank you...
I am so grateful to be well and to see other people benefiting.
As I have said many times, it makes my journey through hell seem like it had a purpose...
Posts: 2083 | From Earth | Registered: Jul 2013
| IP: Logged |
posted
After a long hiatus due to a window blowing in my chamber, we finally scrapped together the funds and had our chamber fixed by Oxyhealth and I am back on line.
I'm currently at 30 minutes with oxygen mask and will go to 45 minutes tomorrow. I have two questions for the group.
My predominant systems are chronic low grade pain in my joints, connective tissue, and muscles as well as abdominal pain that flares. My LLMD believes that my symptoms mimic Mast Cell Activation Syndrome. Does anyone know if mHBOT will help that condition?
From the article Phoiph posted, More is Better: The Recurrent Illusion Of Higher Pressure HBOT in Chronic Brain Injury, the author stated near the top of page 2 that "large chunks of treatment beyond 80 treatments are toxic as I and others have demonstrated". Would people care to comment?
I know he is talking about treatment pressures at 1.7 and treating 2x a week for 7 days but the above statement seems to be talking about HBOT treatment in general.
He also stated on the bottom of page 1 that "besides toxicity there is a metabolic fatigue that occurs reproducibly". Is it possible that Foxy Lady may have experienced this issue as opposed to the oxygen feeding babesia?
I look forward to posting progress and that pony
Posts: 538 | From kentucky | Registered: Nov 2011
| IP: Logged |
posted
Hi Soccermama- Glad you are getting back to treating, that is wonderful. I know being without a chamber would be hard!
I don't have any answers here to your questions but I do have a question for the group.
Have you all experienced burning pain behind the knee caps when diving and afterwards (I would say achy as well- this has made working out somewhat difficult and I am currently going low impact and slow)? I have a feeling it is die off but I am trying to decipher if it is my overuse injury (I was doing the elliptical pretty hard at one point) but what is interesting as it seems to get worse when diving which makes me think die off? Did you find this got better over time? Theoretically you would think with the anti inflam properties of mhbot it would work to heal my knee injuries-thus, I feel led again to die off?
Any thoughts... would be GREATLY appreciated. Trying to determine if I need to go back to the PT guy and that cost real money and time. Thanks...
Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Welcome back, soccermama!
I had all the symptoms of MCAS when I was ill, although at that time there was no label for it.
Since MCAS is an immune driven syndrome and mHBOT modulates the immune response, IMO it will be very beneficial.
About the article... This was also my concern with foxy (which I mentioned in my post to her), especially when she was doing other treatments combined.
Different people have different tolerances to oxygen and mHBOT, just like they do to any drug.
Yes, Dr. Harch was referring to the dangers of treating neurological conditions with frequent treatments, at higher pressures with 100% medical-grade 02.
Even so, there are still individual tolerances and sensitivities that should be taken into consideration even at the mild pressures and lesser 02 percentages that we use, especially if someone is doing longer sessions, more that one session per day or taking in a lot of medications, etc.
Metabolic stress can happen when the free radicals (which are necessary to disarm pathogens, etc.) created are greater than what our natural antioxidants production (promoted by mHBOT) can handle. This can contribute to metabolic fatigue (among other things), causing the energy of the cells to be used up faster than the body can replace it.
Just like anything else, there can be too much of a good thing. Balance is the key.
Regarding large chunks of sessions (over 80) without break possibly being toxic...with high pressures and 100% 02, I believe that would be true. Also, with mild pressures using 02 more than once a day for an extended period, I believe could be too much for certain individuals. The truth is, we really don't know all the answers.
Personally, I have done over 1700 sessions (1 hour, mild pressure with 02), but after 2-1/2 years dropped down from 1 session daily, to 1 session 3-4 times per week. I intuitively knew it was time to reduce my sessions. I feel every day would be too much for me now, but I absolutely needed the daily treatments when I was very ill.
Again, this is an individual thing, and IMO this is why it is safest to go "low and slow", and monitor your reactions.
There are still many questions where mHBOT is concerned, but overall, especially when compared to other therapies, it is very safe when not overdone.
Posts: 2083 | From Earth | Registered: Jul 2013
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
willbeatthis~
I experienced a "revisitation" of pain, etc. in many areas of previous injury when healing with mHBOT.
I even had old scars resurface, then disappear.
It is part of the "peeling of the onion". Fortunately, the revisitation usually is shorter and of less intensity than the original injury.
The pressurization and depressurization of the chamber may also be contributing to the achiness (think of bones aching when a low pressure storm is coming).
I would definitely rest your knees and do low impact while going through this phase. Also, stretching is very important (are you doing Yoga)?
Also...if you do go to the PT, I would ask about a possible muscle imbalance in your quads. At one time (pre-Lyme), I had pain under my knee caps, and found (from running), I had built up one side of muscles more than the other, causing my knee caps to be pulled to one side and become inflamed. I did some specific leg exercises to strengthen, stretch, and balance the muscles, and have not had issues since.
Posts: 2083 | From Earth | Registered: Jul 2013
| IP: Logged |
posted
Bless you, Phoiph! I really appreciate the support.
Does the achiness subside with pressurization \depressurization over time. That makes perfect sense to me.
Yes, I'm resting them for sure and will look into local yoga. I stayed away with my low back but that seems better and yoga would be the speed I think my body needs right now. I am stretching. You can bet if I go to the PT I will ask about the muscle imbalance. I have a feeling that could be happening. I will call tomorrow to get an appt. Given that I will likely need to rehab with the yoga. Thanks for an amazing plan as always! You are the BEST! Hugs! Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
willbeatthis~
Yes, in my experience, it does subside over time...unless, of course, you are continually overworking an injured area.
I have always thought we need to be cautious in attributing everything to a "herx", when we could be overlooking the fact that it could be something from the past that our body is now trying to heal.
I like yoga for many reasons, one of which it uses the body's wisdom to reach places that need the healing...and that you only do what your body is asking for in that moment; never more.
With a good instructor, there are always compensatory positions (and use of props) for injuries and issues (like lower back). I would look for a restorative-type class that does a lot of stretching and balance to begin with.
Keep us posted!
Posts: 2083 | From Earth | Registered: Jul 2013
| IP: Logged |
posted
Thank you, Phoiph, again! This is super helpful. I will reach out to some local yoga places tomorrow for a restorative class. I think going easy is what my body needs right now.
I will keep you all posted and again... thank you!
Jolley, I Am not sure... maybe someone else will know...
Hugs, Team! Thanks for all the GREAT support Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
quote:Originally posted by Jolley: What does metabolic fatigue look like?
Possibly like "chronic fatigue" symptoms, from what I can gather.
Posts: 2083 | From Earth | Registered: Jul 2013
| IP: Logged |
posted
I will say in response to the "metabolic fatigue" I didn't feel at all that the chamber in any way made that worse.
I don't think I would worry about that so much.
Energy, has never been too bad! (thank God) My symptoms really do seem to point to Babesia.
Now the million dollar question is... did the chamber antagonize this infection?
I still don't know, but I do know, it wasn't helping in any way that I could feel.
I didn't feel different at an hour. (which is mostly what I did that year.) And I didn't feel better at two hours. (which I did the last few months.)
I really did like the chamber and am still quite stumped as to why it didn't help or poss. even made things worse! :/
I am not writing to be antagonistic or discouraging! I think everyone should try the hyperbaric and am SURE it can be quite useful and helpful.
I am only writing in case someone else has my same symptoms and can be helped by my experience with it.
I still may try it again in the future, if I can get the Babs symptoms under control! (although I must confess I am a bit scared of it.)
Posts: 477 | From Pennsylvania | Registered: Nov 2015
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Thanks, foxy...your input is very valuable!
(Also...please know the following is not at all directed at you personally, it just prompted me to bring up a few points I've been wanting to mention...)
IMO, there is big a difference between "flaring" and "feeding" an infection/condition.
I don't doubt that mHBOT might "flare" a condition (such as Babesia). A flare refers to symptoms related to an immune response to an infection, etc.
(For example, you might have a fever flare when fighting the flu which will cause you to feel worse.)
I personally don't agree (and have never seen any evidence) that mHBOT "feeds" conditions (like Babesia or yeast). As Dr. J has mentioned, in the body, oxygen doesn't work like "fertilizer" to feed or grow Babesia.
That said, it will strengthen the immune system to react more strongly against a pathogen, and the symptoms may flare while that pathogen is being fought by the immune system.
Curiously, if someone is taking antimicrobials and experience an increase of symptoms, they will call this a flare, or a "herx", and interpret it as a good thing. With mHBOT, however, it somehow is construed to be "feeding" the pathogen.
Posts: 2083 | From Earth | Registered: Jul 2013
| IP: Logged |
posted
You make some good points here Phoiph. Quite frankly on the yeast front, if you really clean up your diet, I don't think it would be an issue.
We all know that for the lyme and cos to lose their foothold, the immune system has to recover the upper hand. I think my babesia is acting up a little but I expect this.
My bart sure has. I think it is smart to be in tune with your body and try other means of support if you can't turn a corner. Much like Foxy lady has done.
As you know I still rife and use the Zhang protocol so I'm not sure there is another angle I could come from and I'm getting ready to experiment again on tapering down rife wise. I am getting close to my 5 month mark- woohoo- and I think very much that mhbot and oxygen is a drug so to not expect herxes and or what some term as feeding an organism is mistaken in my view. Not unlike any other therapy with lyme you have to adjust for your body's response.
I can say that there is no doubt to me mhbot goes deeper than any other medium I've used including IM Bicillin, rife and photons. I am very grateful to Phoiph and the others that share their very valuable experience here.
As we all know treating lyme and cos and having them exact a certain level of fear and folks like Phoiph that stay grounded in science and personal experience are beacons in the night when on this road we experience times of darkness and uncertainty.
At times it is easy to lose hope. I have come to the place of finally understanding that true love and a lot of research indeed casts out fear.
Trusting your body and your experience(through whatever means makes sense to you for healing) to guide you as well as your doctor to me is key. At some level we must save ourselves. Hopefully all that we learn in the process benefits another... like it has here.
Bless you Phoiph and Team O2 for sharing your journeys and being light for me and so many! Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
posted
Just an i.e. I've been hypothyroid for a really long time and on a fairly significant dose of nature thyroid;however, I still present as very hypothyroid. I have done my homework of late- still have a lot more to learn. However, I just discovered adding natural iodine to my regimen with selenium is a game changer for me. None of my docs figured this. The information on iodine alone and breast cancer is enough to make one want to know more. I'm so thankful to be sweating again and feeling like a truck hasn't hit me. I'm no expert but gosh, I'm so glad I read up!
If you have autoimmune thyroid issues, you need to be careful and in all cases talk to your doctor! Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
posted
Well, I have worked up to a full hour with the oxygen mask. It has been different for me this go around. It is much more fatiguing but stimulating in the sense that if I use the chamber at night, I have difficulty sleeping. Similar to how I feel if I would consume caffeine before bed.
I am having an increase in body pain,fatigue,flu-like symptoms, headaches from neck pain, and morning abdominal pain.
I just remind myself that my body is adjusting. Any time I change something with my body I have a flare.
I need to get better at keeping track and journaling so I can remember the improvements. You get so used to symptoms that they become "a part of you" and its in keeping track that you can see patterns and the fading of symptoms.
I'll keep you updated. So grateful for the forum.
Posts: 538 | From kentucky | Registered: Nov 2011
| IP: Logged |
posted
Thanks for the updates Hw88 and soccermomma! It sounds like your both making progress! That is always good
Hw88- that's awesome that you've been able to get things done you're looking more well! Hooray!
Do you mean 20 minutes with the mask and the rest of the time with the mask off I assume but oxygen streaming?
I'm moving along! Hoping my knees will feel better soon. Also experimenting with iodine. That is a bit of a road but we will see! Hugs all!
Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
posted
willbeatthis, Keep in mind it is possible to get too much iodine as it is stored in the body. It is best to test for it. As I recall, there is a urine test for iodine that is pretty accurate.
The selenium helps convert T4 to T3 as well as other benefits against cancer. Once again, you can get too much so if you are on a high dose, limit the time you are on it and go to a maintenance dose. I personally use 2 - 3 Brazil nuts a day for my selenium dose.
Posts: 566 | From NW Arkansas | Registered: May 2003
| IP: Logged |
posted
willbeatthis, Yes, 20 minutes with the mask on the rest of the time mask is off and streaming.
I'm goin to be cutting the dose of my klonopin, so I'm afraid I'm in for a couple of bad weeks due to withdrawal, but overall, I'm moving in the right direction and REALLY so grateful for the recent good days.
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
HW88...
I was also on klonopin.
My thought is it would be worth seriously considering waiting until you are further along and more stable with your mHBOT before tapering it.
Getting off of klonipin can be seriously traumatic and stressful on one's body/mind for many reasons. My concern is that it might throw you into a spin just when you are starting to improve. It also has to be done extremely carefully (see Ashton Manual).
I understand why you'd want to get off of it (and definitely should at some point)...but how important is it that you withdraw right now?
Posts: 2083 | From Earth | Registered: Jul 2013
| IP: Logged |
posted
I take Estazolam for sleep every night (waiting to try and stop anti anxiety meds) and it works....our bodies need to stay calm,vital while trying to heal.
As usual great advice from Phoiph
-------------------- Chronic Lyme Posts: 36 | From Florida | Registered: Jun 2016
| IP: Logged |
posted
Thanks, Digby. I'm experimenting with 6.25 mgs right now. Good idea on the Brazil nuts. I'll do that as well.
The urine iodine test is with 50 mgs of iodine and honestly I am scared to attempt that(I can feel 6.25- a little jazzed up until it settles). What would be your recommendation? I am currently not sweating though iodine has helped that and other various hypothyroid symptoms-basal temp 96.1 recently- I'm on nature thyroid 195 a day (3 grains I think). Any suggestion would be appreciated! Thanks all!
Posts: 859 | From Southeast | Registered: Mar 2011
| IP: Logged |
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[woohoo]](graemlins/woohoo.gif)
Five Years Free! Phoiph... Thank you! You INSPIRE us all!
![[group hug]](graemlins/grouphug.gif)
![[bow]](graemlins/bow.gif)
Printer-friendly view of this topic