kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I have a friend in Arizona who uses a wheel chair for distance. She can walk around the house briefly. She has a service dog. There is a learning curve for getting the dog used to the noise and presence of the wheel chair. But otherwise it is very successful. But you need to make sure the scooter is approved for outside use. She found that one scooter she was considering buying to be only used inside.
What about a high school neighbor? There may be one that loves dogs but doesn't have one that would be willing to walk your dog. Just a thought.
Posts: 1848 | From Maine | Registered: Jun 2004
| IP: Logged |
posted
I asked a young lady who also had a dog if she would walk ours too when when she walked hers she is not a high school girl though She and her sister are asking a lot of money so I don't know if that will work out I am still thinking of options Thanks everyone for giving feedback on one of the small problems we face as lyme suffers
Posts: 261 | From California | Registered: Sep 2017
| IP: Logged |
posted
Hello. I have posted in awhile, but I have been diving (about 825). I have some catching up to do on reading posts! While I work on that, I have a question.
I know that hard chamber HBOT is contraindicated for patients with COPD. But, what about mHBOT? Has anyone researched this or have an opinion based on personal practical experience? Thanks!
Posts: 42 | From beautiful Texas Hill Country | Registered: Jun 2015
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Many years ago when I was in nursing school, they taught us that people with COPD should only have 2 LPM of oxygen. Any higher than that and it decreased the reflex to breathe. Which would not be good. I haven't worked in years, so I don't know if they have changed that number or not. But I would say a doc should be conferred with to make sure it is OK to dive.
Posts: 1848 | From Maine | Registered: Jun 2004
| IP: Logged |
posted
Hi. I had metronidazole toxicity 10 months ago. My main symptoms are: 1.anxiety- which are getting worse and worse as time goes on 2. supplements sensitivity- I can't tolerate 90% supplements
I don't know do I have lyme or not.
I started hyperbaric oxygen therapy. Did 15 sessions, each lasted about 58 minutes. I feel worse these 15 days. Is herx common for all HBOT patients, even if they don't have Lyme. Also, metronidazole may elevate mercury levels . It is possible that I have mercury toxicity. Does HBOT helps detoxing heavy metals from the body?
Posts: 7 | From Serbia | Registered: May 2018
| IP: Logged |
posted
Posts: 7 | From Serbia | Registered: May 2018
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Toby, I felt worse when I first tried mild HBO. I started at a full hour. The second go, I started at 10 minutes and ramped up on my time. It was much more tolerable that way.
Posts: 1848 | From Maine | Registered: Jun 2004
| IP: Logged |
Almost 1000 dives later and I still have to be careful...it took me a few months of daily 20-30 minute dives to work my way up to 1 hour with a mask (02).
Monitor the supplements,herbals or any additional therapies....learned first hand...I felt any and all of them.
Wish you well
-------------------- Chronic Lyme Posts: 36 | From Florida | Registered: Jun 2016
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Toby~
Are you doing HBOT, or mHBOT (mild pressure)?
If you are doing HBOT in a clinic, what pressure (ATA or PSI) are they giving you? Are you wearing a mask?
As mentioned, it is crucial for many conditions to use lower pressures and ramp up slowly.
Yes, mHBOT definately assists with detoxing (at the cellular level), but again, this must be done slowly, as to not release toxins faster than they can be eliminated. People vary in their ability to eliminate toxins.
Also, a clean, gut healing diet and gentle exercise (like yoga) is crucial, as well as not adding on additional detoxing therapies, or taking too many supplements/antioxidants at the same time.
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
quote:Originally posted by toyswalk: Hello. I have posted in awhile, but I have been diving (about 825). I have some catching up to do on reading posts! While I work on that, I have a question.
I know that hard chamber HBOT is contraindicated for patients with COPD. But, what about mHBOT? Has anyone researched this or have an opinion based on personal practical experience? Thanks!
Hi Toyswalk,
I will repeat some of what I answered via email to you here:
As I understand it, care must be taken with the use of oxygen in general with COPD if the person retains carbon dioxide, as it may diminish the breathing reflex. To prevent this from happening, they may be prescribed only a specific amount of 02 to keep their blood 02 within certain parameters.
That said, here is an encouraging article about COPD and hyperbaric oxygen:
Do you have a pulmonologist? I would definitely ask about how 02 relates to your condition specifically, and how you can use it safely.
This is one of the reasons why people are technically supposed to have prescriptions for oxygen/oxygen concentrators.
I think you are wise to research this...even if you were cleared for mHBOT a couple of years ago, it is always good to revisit issues if you feel you are not making the progress you hoped for. I feel there is always a reason, we just have to keep looking.
Posts: 2075 | From Earth | Registered: Jul 2013
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Hello everyone.... I’m back. I thought I would try to get back into mHBOT.
I am too brain dead to explain everything that has happened. Bottom line is I am sick as hell 😫. Lyme disease was a walk in the park compared to my symptoms now. I have Morgellons now.
I can’t remember the time line when I was diving before, but I did get to a point where I was emerging from the abyss. I was walking on the beach every day , swimming in the ocean. I felt that there might be a light at the end of the tunnel. One day I swallowed a bunch of ocean water and got sooooooo sick 😷
I developed sores all over my body, had severe itching, severe GI problems (Chrons, colitis type symptoms), my mouth and gums are swollen, my brain more messed up than before, heart problems, UTIs, inability to breath, weakness and fatigue. I also had this incredibly disturbing symptom that things were crawling all over me, in my organs etc.
I write some of my symptoms here because I’m hoping mHBOT will help and I can mention which symptoms have changed.
I’ll be praying 🙏 for the group and diving every day (God Willing).
Thanks for the words of encouragement Phoiph
Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
I rarely dive and am working full time and walking 8-10 miles a day. Life is completely different now for me, it’s normal. I live life as a 50 year old would and have more energy then most of my work mates.
These first weeks will be hard most likely since you are so sick but there is a light at the end and you’ve been there before.
Keep us posted.
Posts: 238 | From AZ | Registered: Jan 2015
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Welcome back, Haley! I look forward to reading when your symptoms list dwindles. Happy diving!
Posts: 1848 | From Maine | Registered: Jun 2004
| IP: Logged |
posted
Hi guys, i just joined today but have been reading the boards. Lots of great info.
Phoiph, i have a question about you for this mask. I know you said you have to be careful with the non-breather mask. What do you think about this set up?
The mask the guy made at that link you posted seems like too much trouble to me. I prefer to keep it simple and use a simple, non-rebreather mask with valves to let air in if you over breathe the content of the bag. I always take them out of their plastic and air dry them for a week or two to get the smell out.
BTW, Phoiph doesn't agree with using this type of mask but I've recently completed 1000 dives and it has worked well for me.
Posts: 564 | From NW Arkansas | Registered: May 2003
| IP: Logged |
posted
Hi Digby and thank you for the warm welcome! I like the non-rebreather masks too because youre getting more oxygen. And wow, youve done a lot of dives. I dont know your whole story but after how many dives did you really start to feel a shift? I know everyone is different. Its seems its like in the 70-80s.
Also i have MTHFR & CBS mutations and wondering your thoughts on that and mHBOT? As well as what supplements you think are good while doing this therapy? Thx!
-------------------- Rodge Posts: 9 | From CA | Registered: Jun 2018
| IP: Logged |
posted
Rodge, I think I finally started to feel a shift in my health around 120 dives in. I almost gave up but Phoiph asked me to stay the course and I owe her a huge debt of gratitude for all her advice.
My advice to anyone doing mHBOT is to remove antioxidants from you supplements. They interfere with the oxidative processes that the HBOT induce.
My other advice is to eat a Ketogenic diet. I firmly believe that it was the combination of a strict keto diet AND the mHBOT that has caused me to go from homebound/wheelchair to hiking and riding a bike.
I don't concern myself too much with the genetic mutations because I think that the positive epigenetic lifestyle changes shift one's genetic expression to a more homeostatic balance.
Hope this helps.
Posts: 564 | From NW Arkansas | Registered: May 2003
| IP: Logged |
posted
Digby, thats what i was hoping to hear about all the things youve said. Im glad you stuck with it and finally started to feel better, kudos to you and Phoiph!! Genetics get tricky and some ppl tend to hyper focus on them. While i know they can hinder certain things, your lifestyle plays a huge part in turning them on and off. I already eat keto and have read a little bit about how much it can help while doing mHBOT. Can you send me a link to the mask you use/have?
-------------------- Rodge Posts: 9 | From CA | Registered: Jun 2018
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Awww, thanks, Digby...but giving up is not your M.O...:)
Welcome, Rodge...
I agree with Digby about the antioxidant supplements. Getting them via your diet (as opposed to supplements) is best.
Digby mentioned that I am not in favor of the non-rebreather masks for our purposes, and I'll explain why...then you can make your own decision.
Non-rebreather masks are designed to be used with oxygen flows of at least 10-15LPM. IMO, using them at lower flows creates safety and effectiveness concerns.
The oxygen concentrator most frequently recommended for use with a home chamber (the Air Sep New Life Intensity 10), should be set no higher than 8 -8.5LPM, or the backpressure from the chamber can cause it to go into an “oxygen on demand” mode to retain oxygen purity.
A 10-15LPM or higher flow is recommended to ensure the non-rebreather bag will stay partially inflated (at least 1/3-2/3 full) with incoming 02. If the bag does not stay inflated properly due to less than adequate oxygen flow, then the following is possible:
1. If the non-rebreather mask is equipped with a working safety valve, it will allow normal room air to be inhaled if the bag deflates. If this happens frequently due to inadequate oxygen flow, then I am not convinced that the person will receive a higher 02 concentration than with a Simple Hudson Mask.
2. If the non-rebreather mask does not have a safety valve, but has had one of the side vents removed for safety, then 02 will be diluted with room air and it will function similar to a Simple Hudson Mask anyway.
3. If the non-rebreather mask is not equipped with a working safety valve (and the mask fits snugly and no other side valves have been opened or removed for safety) there is a risk of suffocation if the bag collapses.
Posts: 2075 | From Earth | Registered: Jul 2013
| IP: Logged |
posted
From what phoip says it has to have a safety valve and that makes sense I see them on ebay will have to look again
Posts: 261 | From California | Registered: Sep 2017
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Homina,
Just to be clear, I personally don't recommend the non-rebreather for the reasons I mentioned above; I use the "Simple Hudson Mask".
Posts: 2075 | From Earth | Registered: Jul 2013
| IP: Logged |
Been diving for some time now and finally keeping weight on my body.
I see this as a positive,however,now my hunger is overwhelming?
It may seem trivial but eating Paleo for some time and ALWAYS being hungry ?(blood sugar is fine)
A good friend emailed me stating "your body is probably absorbing nutrients now")
That being said still around 80% and glad to be there......just hunger?
Thanks you all
-------------------- Chronic Lyme Posts: 36 | From Florida | Registered: Jun 2016
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Reminder, I go in and out of being hungry like that. Almost cravings but not quite. I try to keep healthy snacks handy. I have a bad gut, so I considered it a healing thing. I think I remember reading that others experience this too.
Posts: 1848 | From Maine | Registered: Jun 2004
| IP: Logged |
posted
Digby Is their any other rebreather mask you like?
For others including Phoip
Does the new life intensity 10 concentrater have sufficient airflow at 8 to properly inflate the bag on a non rebreather mask under pressure? Thanks
Posts: 261 | From California | Registered: Sep 2017
| IP: Logged |
posted
HH, I really like the one I mentioned above, mainly because it has 2 valve openings so if you over breathe the bag, the air will come in one of those openings. Other models may have only one opening which to me, increases the risk of running out of air.
I use an Sequal Integra concentrator and with it set to 10 I never run out. I don't know how it will work with the New Life unit.
Posts: 564 | From NW Arkansas | Registered: May 2003
| IP: Logged |
posted
Reminder...There are lots of versions of the Paleo Diet, so it's hard to comment on your question. If you are hungry, you may need to reduce carbs and/or increase healthy fats. That will typically take care of the hunger.
Posts: 564 | From NW Arkansas | Registered: May 2003
| IP: Logged |
Yes more good fats and olive oil,mostly chicken,fish.....not as much beef....bone broth...veggies...berries
One big question,I drink a couple cups of coffee w coconut milk and pure stevia on a daily basis,it helps with the constipation.....sorry for too much info,decaf green tea also.
Lastly,the rebreather sounds like an option if you are starting to heal?I couldn't imagine starting mhbot with that high level of o2?
Now,however,you have me thinking.
Always great info here....grateful
-------------------- Chronic Lyme Posts: 36 | From Florida | Registered: Jun 2016
| IP: Logged |
posted
Sounds like a good mix of macro nutrients. Not sure what your question is but check the carb content of your coconut milk. You might try coconut cream if your's is too high in carbs. It is a good addition to a Paleo diet.
Yes, everyone has to figure out what level to start at based on how sick they are. Slow with incremental increases is best.
Posts: 564 | From NW Arkansas | Registered: May 2003
| IP: Logged |
posted
Coffee has lots of beneficial components, the only problem is if you are drinking more than ~ 3 cups a day in which case you could find it irritating to the intestinal tract. Of course depending on your genetic snps and liver detox pathways, too much caffeine can be a stressor to the central nervous system and the adrenals. Moderation grasshopper!
Posts: 564 | From NW Arkansas | Registered: May 2003
| IP: Logged |
posted
Hello all, I just registered today but have been reading other parts of this forum for years.
I have had Lyme symptoms for over 20 years. Eventually my doctor suspected Lyme and I started testing negative over 10 years ago. Increasingly severe symptoms led to further testing, positive 5 years ago for Lyme + Bartonella. Since then I have done about a year of daily IV antibiotics, years of oral antibiotics, herbal protocols, Rife plasma, diet adjustments, detox, etc. through multiple LLMDs, trips to the ER and hospital admissions.
These years of treatments made some improvements from my worst, but I still have a high constant level of pain and other rotating symptoms with no relief. I have been researching treatment options intensively for the past 5 years, and I saw HBOT mentioned but discarded it as yet another wacky treatment for symptoms only.
A few months ago I was having increasing stomach problems with the latest oral antibiotic plus herbal combination I was on, but if I stopped the antibiotics my symptoms got much worse (raging neuropathy). When a friend with Lyme said they tried mHBOT a couple of times and it helped with symptoms I took a deeper look at it and was surprised to find credible references (including this forum) for oxygen not only killing Lyme, but helping to repair the damage.
I tried a few mHBOT sessions at a clinic to understand the mechanics and make sure I could tolerate it, then purchased my own chamber for home use. I got a Newtowne chamber with an AirSep Intensity 10 concentrator and have been diving for 60-70 minutes daily with a mask for the past month and a half. I spent my hours in the chamber reading this forum from the beginning (that took a while!) and the Oxygen Revolution book.
My stomach problems got worse just before I started diving consecutively and I had to try stopping the oral antibiotics. No massive symptom increase yet and I have been off antibiotics now for much longer than I was able to be previously, so maybe the mHBOT is helping.
I had a few spikes of symptoms between sessions that I was able to control with detox and may have been herxes. I usually feel better than usual for a few hours after diving in the morning, but over the past couple of weeks have had increasing pain and headaches, consistently worse than my average level. The better is encouraging, the worse is getting discouraging and making me wonder if I need to take breaks or make other adjustments?
What has been the most successful protocol for how often and how many minutes to treat?
I have run across the following so far: 60 minutes twice daily 60 minutes daily, no breaks 60 minutes 5 days on, 2 days off per week 90 minutes Monday Wednesday Friday 60-90 minutes once or twice a week Sets of 40 treatments (daily or 5 on 2 off) with a break between? Any others?
Much as I didn't want to, I stopped my consecutive diving yesterday to research further and seek advice.
Posts: 9 | From Northeast USA | Registered: Jun 2018
| IP: Logged |
I am a 60 minutes every day believer for 2 years minimum as Phoiph recommends. You are early in treatment so things will get worse and better. You will read the slogan “two steps forward, one step back. Journaling is a great way to track progress, setbacks and any tweaks that might be needed.
I was 20 plus years sick as well and I believe Phoiph told me it’s one month of treatment for every year you have been sick, minimum.
It’s a marathon not a sprint. Looking forward to your updates. I know many that have NT and like the chamber.
Posts: 238 | From AZ | Registered: Jan 2015
| IP: Logged |
quote:Originally posted by Digby: Coffee has lots of beneficial components, the only problem is if you are drinking more than ~ 3 cups a day in which case you could find it irritating to the intestinal tract. Of course depending on your genetic snps and liver detox pathways, too much caffeine can be a stressor to the central nervous system and the adrenals. Moderation grasshopper!
I drink coffee, but it’s worth mentioning that caffeine is an immunosuppressant.
Posts: 146 | From Virginia | Registered: Mar 2010
| IP: Logged |
quote:Originally posted by Peimomma: I was 20 plus years sick as well and I believe Phoiph told me it’s one month of treatment for every year you have been sick, minimum.
I’ve been sick for nine years now. I’ve been diving for ten months.
My neural symptoms, like anxiety, brain fog, those are mostly gone.
I still have POTS, exercise intolerance, and chronic low grade inflammation - with all the damage that does.
Posts: 146 | From Virginia | Registered: Mar 2010
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I also dive, or attempt to, daily for 60 minutes. When first starting there were days that I would skip if my herx was more than I wanted. Typically it only took a day off to feel back to "normal".
Posts: 1848 | From Maine | Registered: Jun 2004
| IP: Logged |
From reading this my take away is that it is immunosuppressant but in a way that reduces inflammation. Moderation is the key.
Posts: 564 | From NW Arkansas | Registered: May 2003
| IP: Logged |
posted
20+...I think most of the people on this forum who have had success with mHBOT (myself included) have done 1 hour/day at pressure. My experiments with 90 minutes dives made it clear to me that less is better.
If I had the time to do it, I would experiment with 2 30 minute dives a day. I have reason to believe that may work better but it's just too much of a time investment now that I'm feeling better.
Posts: 564 | From NW Arkansas | Registered: May 2003
| IP: Logged |
posted
Thanks so much everyone for the welcome and helpful comments. I was hoping to see more improvement after 50 dives, but maybe its just a bad time. I got back in the chamber today after two days off and will try to stick with it, 60 minutes daily again.
@Peimomma - I definitely agree with the value of keeping a health journal. I started writing down notes trying to relate my various symptoms 13 years ago. This is how I figured out that I probably had Lyme despite the negative tests and demanded more testing that was finally positive. I still keep my journal every day - it has been extremely helpful.
Posts: 9 | From Northeast USA | Registered: Jun 2018
| IP: Logged |
posted
Speaking of keeping a journal, when I was in the hospital every day for IV antibiotics they were always asking me what my pain level was for their records, so I started keeping track of it in my journal as well. It makes it easier for me to measure each day, along with more detailed notes so I can try to figure out what might have caused the change. I searched for good descriptions of each level to try to keep my ratings consistent. Here is the scale I use in case it might help someone else:
0 Pain Free 1 Pain is very mild, barely noticeable, most of the time you don't think about it. 2 Minor pain. Annoying and may have occasional stronger twinges. 3 Pain is noticeable and distracting, however, you can get used to it and adapt. 4 Moderate pain. If you are deeply involved in an activity, it can be ignored for a period of time, but is still distracting. 5 Moderately strong pain. Can't be ignored for more than a few minutes, with effort can do work or some social activities. 6 Moderately strong pain that interferes with normal daily activities. Difficulty concentrating. 7 Severe pain. Dominates your senses, significantly limits ability to perform daily activities or maintain social relationships. 8 Intense pain. Physical activity is severely limited. Conversing requires great effort. 9 Excruciating pain. Unable to converse. Crying out and/or moaning uncontrollably. 10 Unspeakable pain. Bedridden and possibly delirious. Very few people will ever experience this level of pain.
Posts: 9 | From Northeast USA | Registered: Jun 2018
| IP: Logged |
From reading this my take away is that it is immunosuppressant but in a way that reduces inflammation. Moderation is the key.
That makes sense to me. My vision sometimes improves when I have a few cups.
On the other hand, I can get some pretty nasty headaches if I overdue it. Probably the Bartonella.
Posts: 146 | From Virginia | Registered: Mar 2010
| IP: Logged |
quote:Originally posted by Digby: 20+...I think most of the people on this forum who have had success with mHBOT (myself included) have done 1 hour/day at pressure. My experiments with 90 minutes dives made it clear to me that less is better.
If I had the time to do it, I would experiment with 2 30 minute dives a day. I have reason to believe that may work better but it's just too much of a time investment now that I'm feeling better.
At 60 minutes I don’t really feel much of a herx. At 90, I do.
That doesn’t make going longer better I suppose.
For me, I start to feel pain and stiffness in my joints. Also long bone pain.
Posts: 146 | From Virginia | Registered: Mar 2010
| IP: Logged |
A rebreather mask will deliver 85 to 90% O2. I don't know how much a simple hudson delivers.
Posts: 564 | From NW Arkansas | Registered: May 2003
| IP: Logged |
posted
Digby I checked on the Dynarex Oxygen Mask, High Concentration, Non-Rebreather If Phoiph is correct it takes 10 to 15 lpm to properly inflate one of these masks
How would it work on 8 lpm?
What is your oxygen concentrater setting when you use the mask? Thanks
Posts: 261 | From California | Registered: Sep 2017
| IP: Logged |
posted
HH...I have a Sequal Integra, which I run at 10 lpm. It fills the bag fine and I don't run out of air unless I engage in deep breathing during the dive. Actually I don't run out of air at all...the bag empties but the valves allow air in.
I don't know how it would work at 8 lpm.
Posts: 564 | From NW Arkansas | Registered: May 2003
| IP: Logged |
posted
I use a Salter 8140-7 'non-rebreather' mask which comes with both side valves installed, no open ports. I don't like 'rebreather' masks (which don't have an internal valve to the reservoir bag) because if the flow of oxygen is inadequate or stops you can easily end up rebreathing your own CO2. If the oxygen flow stops with a 'non-rebreather' it's pretty obvious because I can't inhale (if all valves are installed and you have a good seal) and am forced to immediately remove the mask.
I have to adjust my mask and strap carefully to make a good seal. When I first started diving, sometimes if I got in the chamber and put the mask on right away my respiration rate was fast enough to empty the reservoir bag and I had to remove the mask until I relaxed more from the effort to get in and zip it shut. I resolved this by simply resting until the chamber was up to pressure before I put on the mask. It works well for me with my Intensity 10 concentrator running at 8.5 LPM.
I started last week...NRB 10-15 minutes per day...something is happening and it is positive,however,waiting for any "fallout"or reactions....great article!
Digby....thanks)
-------------------- Chronic Lyme Posts: 36 | From Florida | Registered: Jun 2016
| 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)
Printer-friendly view of this topic