Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
S13 I'm looking forward to seeing your progress. I also have not felt the oxygen alone is enough to take the infection down. I have decided to do a short course of antibiotics intermittently and hope that at some point my body will be strong enough to take over.
We all have different levels of illness, some people may not need antimicrobials, that doesn't mean that is the course for everyone.
I know that the oxygen has significantly improved some of my symptoms, however maybe I have more obligate aerobic bugs (the ones that thrive on oxygen) and less obligate anaerobic bugs (the ones poisoned by oxygen). I still have faith that the human body is an amazing machine that will come through in the end and that overall the oxygen is helping my body recover.
Peimomma, that is amazing recovery. So happy that you are feeling strong!!!
Posts: 2232 | From USA | Registered: Aug 2009
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I did overcome my fear but still have a few freak outs if I don't have a fan going in the chamber. Once I got in, zipped up and started telling my husband to unzip me...lol. For whatever reason if the fan is blowing on me I'm fine, maybe it tricks my brain into believing I'm on a beach...haha
I would first try a big chamber or as big as you can, take your phone or iPad in with a Netflix movie ready to watch, it totally takes your mind off the space. There are windows but that doesn't mean much to those that deal with claustrophobia 😊. I had the lady or someone you know stand at the window and talk to me at first and just remember, you are breathing O2, like that helps right?
Posts: 233 | From AZ | Registered: Jan 2015
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posted
Thanks Haley!! You are so right, we are all at different levels with different bugs so the healing is a process. I believe my prep move has moved my recovery along at a nice clip but not ready to attempt work yet as I know that is not within reach for now.
Slow and steady is what Phoiph continues to remind us all as we journey on. Consistency is so important she says....so even when I just don't want to chamber cause I hate Lyme, I do it anyway.
Try journaling if you aren't, it shows me the baby steps and keeps me going.
Posts: 233 | From AZ | Registered: Jan 2015
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Peimomma. I will try to journal specifically about the oxygen. I do keep a calendar and log what I've done and how I am feeling etc.
To tell you the truth I get very confused, in fact it's one of my worst symptoms, almost like an alzheimer patient. So, I start to do something and then I forget. I have notes all over the place, but not sure what they mean hahahaha
That is a good suggestion. I will start a journal only on the oxygen I'll keep it in my chamber, so I won't forget. Do you write something everyday or weekly or ?
Kaibyrd - I did feel claustrophobic when I first tried the chamber, but it went away quickly. I now see the chamber as a haven, a place that I can go away from the world. I am in a complete state of gratitude when I am in my chamber. Worst case scenario... if you felt that you needed to get out, you could unzip the chamber.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Haley I journal every day only pertaining to Lyme therapy, exercise, and symptoms. My memory/mind has been one of the symptoms that has improved the most....my poor brain is locked in a sick body still😉. Hahahaha
Yes Kaibyrd, as long as you don't inflate you can unzip. Once you are in it takes 10 min or so to decompress. The problem for me comes when the chamber has just been zipped and the top is hanging low before it puffs up. That's when I need the person in the window talking to me. Once it's inflated I just have to stay occupied.
Haley I agree that it is a place of refuge and peace from the world. I've been able to nap a few times but usually surf the net or watch Netflix. We have a remote in our chamber so I can shut it off at anytime if something is bothering me and need to decompress and get out.
Posts: 233 | From AZ | Registered: Jan 2015
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posted
Thanks Pie Mamma. I really want to do this if I can afford it but just watching videos makes me panic. I'll have to work on that and maybe I could start slow with just 10 minutes and add a few each day. The benefits just seem to be so great that I'm willing to do whatever it takes. I've found a therapy that's helped me with other anxieties called Tapping so I'll start watching more videos of people in the chambers while doing that. Maybe that will help get me to a better place with this.
-------------------- KB Posts: 176 | From Northern VA | Registered: Apr 2015
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posted
No worries Kaibyrd😊 I think we all have a love hate relationship with spell check...lol
I want to share about the last few days and my treatments. Due to pollen from cottonwood trees my allergies and sinuses were acting up and I wasn't able to clear my ears the last two days. So no dives but I did sit breathing the O2 for 2 reasons, first to keep my routine of treating and second the O2 is still beneficial 😊. I'm back in the tube today, YAY!!!
Posts: 233 | From AZ | Registered: Jan 2015
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Were you able to dive while on vacation in Alaska? I know some people take their chambers with them.
Posts: 120 | From Maine | Registered: May 2015
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I didn't take my chamber and it was a nice break from therapy. I had 5 days of no chamber and felt very good the entire trip keeping the crazy pace I did with a bunch of healthy people.
Posts: 233 | From AZ | Registered: Jan 2015
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posted
I want to encourage everyone to keep posting their progress. I am trying to work up the courage to invest in a chamber.
I have tried so many things since my crash in 2011 and while I have improved, I am still not 100%
Very frustrated but learning to live with my current limitations.
A chamber is so expensive and I have already spent thousands upon thousands of dollars. I just don't want my family to suffer financial loss anymore.
Sigh!
Posts: 538 | From kentucky | Registered: Nov 2011
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Soccermama...
Do you know anyone in your area that you could cooperatively share a chamber/expenses with?
There are ways to rent a chamber and divide expenses. For example, if you had 3 other people involved, your cost could be $125./month each (about $4.00/session).
That is only one way...another would be to rent-to-own a used chamber, for example.
One thing to keep in mind also, is that a quality chamber is an investment that can be resold, so you can recoup much of your investment if you decide to sell.
Feel free to PM me if you'd like help or information...
Posts: 1994 | From Earth | Registered: Jul 2013
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posted
Soccermama I hear you.....it was the most difficult decision for me as well because we had spent 10's of thousands of dollars on therapies, a clinic in Reno, Rife machine, sauna, massage chair, herbal protocol and numerous vitamins and medications. Not to mention a new bed, car, vacuum and many other things to help control my pain...ugh
Phoiph was instrumental in providing us with sound information that helped us turn the corner and take the leap of faith. I'm so happy I bought and am looking forward to having my life back in the near future. It does take persistence and consistency to do daily treatments even when we start to feel better.
We bought not only for my health but for my husband to treat as well. He turned 50 this year but was told the other day he looks 39😊. We absolutely look at our chamber as an investment and a medical expense tax write off at the end of the year. I hope to see you posting your progress soon enough too👍
Posts: 233 | From AZ | Registered: Jan 2015
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Peimomma, did you go to the Sierra Integrative Medical Center?
Posts: 3528 | From US | Registered: Apr 2007
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posted
CD57 it was called Reno Integrative Medical Center when I went in Jan 2010, not sure if they changed the name??? It was a few months before my positive Lyme test.
Posts: 233 | From AZ | Registered: Jan 2015
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Feeling good and energized to keep treating. It is so overwhelming to think just 4 months ago I was pretty much housebound with pain, fatigue and all the other horrible symptoms that go with this illness.
I still have a lot of healing to do so I can get back to a job and do all these activities I've been doing lately. Pacing myself and conditioning my body to go just a little more each time.
For the month of June I have decided to do the 10,000 steps M-F, and do yoga or light weight training M-F rotating. This was my first week and actually had some muscle soreness, not Lyme pain....lol. A few headaches but nothing the lasted after getting out of bed and moving/stretching.
Posts: 233 | From AZ | Registered: Jan 2015
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
Yesterday we rode 180 miles on the motorcycle to meet some family for lunch and I did great in the heat.
I felt so good this morning during my walk I started to run and soon I felt like Forrest Gump....I just kept running and running until I hit 3.1 miles. This afternoon I did my light weights, drive to a meeting and helped hubby hang window film.
Not sure when my next herd will hit but I'm taking advantage of this good streak while it lasts. I've cut back the coffee enemas again to 3-4 a week. Still taking greens, vitamins and homeopathic remedy once a month.
Posts: 233 | From AZ | Registered: Jan 2015
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posted
Not sure when my next herx will hit, not herd. Although it does feel like a herd has run over me when they come😳
Posts: 233 | From AZ | Registered: Jan 2015
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Phoiph, hoping you can talk more about the diet aspect of your recovery, or anyone else?
Someone turned me on to this blog of a young man with an unoperable brain tumor who was eating lots of plant fats and getting worse....then he went on a ketogenic diet and has gotten a lot better. Ketogenic diets are known to improve seizures.
posted
I couldn't get past 5 minutes in my Drs office. It made me flare so bad I was bedbound for 2 weeks.
I don't know if it's because I cannot genetically detox, or what.
I had such high hopes because it took away my neuralgia and myalgia immediately while I was in there.
Anyone have this problem and still keep going and make progress?
Posts: 115 | From US | Registered: Sep 2014
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
A.G...
Most people with Lyme and chronic illnesses need to work up very slowly with mHBOT...but with the proper starting protocol, they are able to continue and work up.
Unfortunately, most clinicians don't fully understand the sensitivity of people with Lyme, and will start them too quickly or with too much pressure.
Also, many people underestimate the power of mHBOT, and will initially try to do many other protocols along with it. Often times this is more than the body can handle, and can be counterproductive.
You can PM me to discuss an initial protocol if you like...
Posts: 1994 | From Earth | Registered: Jul 2013
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quote:Originally posted by Peimomma: Interesting read CD57. Has anyone tried this diet?
I am now actually following the GAPS introduction diet (stage 2), without vegetables except for sauerkraut juice. Thats basically a ketogenic diet, no carbs at all.
And it is helping me tremendously, and allowing me to rebuild my gut and gut flora! Also it strengthens my immune system. That does imply some healing reactions, but those are expected.
I think Phoiph actually followed a similar diet when she started her path to wellness?
Posts: 385 | From The Netherlands | Registered: Nov 2013
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
CD-57 & S13...
I was only able to eat 6 of the same foods for a number of years after stopping drug therapy and prior to starting mHBOT.
I was force feeding 3x/day, and wasn't digesting much at all, but the foods that kept me alive were: bone/meat broth, avocados, sardines, soaked and baked nuts, eggs, and peeled green apples.
As you can see, it was a diet high in good fats, and I continue to eat these good-fat foods...but of course, have a much more expansive and rounded diet now that I am well.
I still don't eat gluten (and likely never will), and rarely any gluten-free grains; but do include sheep and goat dairy, grass fed beef, salmon, fruits, vegetables, quinoa/seeds, and dark chocolate.
I buy organic as much as possible.
Even though I didn't follow the GAPS diet exactly (I was too dysfunctional to follow anything and the outline wasn't as clear back then!), I do highly recommend the introductory GAPS diet...and then moving on to the GAPS to help heal the gut...even if you don't believe your gut is a problem...
Posts: 1994 | From Earth | Registered: Jul 2013
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posted
Phoiph, would you say the diet with probiotics was responsible for fixing your gut? Or did you feel mhbot also had a role in this?
Posts: 385 | From The Netherlands | Registered: Nov 2013
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quote:Originally posted by A.G.: I couldn't get past 5 minutes in my Drs office. It made me flare so bad I was bedbound for 2 weeks.
I don't know if it's because I cannot genetically detox, or what.
I had such high hopes because it took away my neuralgia and myalgia immediately while I was in there.
Anyone have this problem and still keep going and make progress?
Hi A.G.
I've been doing Mhbot for about 3 months now. I started at the full hour treatment and quickly discovered that it was much to much for me. After talking with Phoiph I reduced my treatment time down to 20 minutes.
I know 20 minutes is still much more then your 5 minutes that you couldn't tolerate well. But the point the point I wanted to make was after 5 weeks I am now finally able to do a full hour treatment without negative results.
I know your PMing Phoiph which is great. She helped me and I am sure she can help you too.
Now to begin making gains Posts: 120 | From Maine | Registered: May 2015
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So happy you stuck with mHBOT and are now up to full speed. I look forward to seeing you post your gains.
I'm in a cycle of herxing with joint pain and fatigue but still far better then my days in January and before.
Posts: 233 | From AZ | Registered: Jan 2015
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I have noticed this...Up until a few days ago each time I finished my dive I would feel extremely tired for a few hours. About 3 days ago that tiredness after the dive wasn't their. I figured it was a one time thing but so far it hasn't come back.
Posts: 120 | From Maine | Registered: May 2015
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
S13...
The diet kept me alive, but wasn't healing my gut alone, by any means.
It wasn't until I did mHBOT for several months in conjunction with the diet that the gut (and ultimately my entire condition) started to improve.
mHBOT is very healing to the digestive mucosal tissues (e.g., see use with ulcerative colitis and Crohn's), but works synergistically with a gut healing diet. In my opinion. Both are crucial!
I actually remember the day my digestive system started kicking in again. I began to feel the first "hunger pangs" I had in years while in the chamber (I had severe Lyme-induced gastroparesis). Around this time I also felt the stomach acids starting to be produced again, at which time I was in a much better position to gradually add foods to my diet.
Monti... Sometimes people do have fatigue when they first start mHBOT. It increases cellular metabolism, so it can be like exercise to your body, and may requires rest. Usually this phase passes as your body adjusts as it gets stronger...
A.G. and I are currently discussing why the difficult time after 5 minutes of mHBOT. I have shared that I strongly suspect it is not the mHBOT per se, but the addition of mHBOT to an already taxing protocol that may have been the tipping point...
Posts: 1994 | From Earth | Registered: Jul 2013
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posted
Great observation Monti, it's the little gains that have helped me keep the strict schedule of diving every day even when I want to be doing something else.
I have noticed that my dips come near a 60 dive interval, 60, 120, 180. My first big wall was near dive 60, the April herx was right near dive 120 and this one is at dive 172.
For those that may not have read in my past postings that when I started mHBOT my gut issues had been resolved along with most of my migraines which is one of the reasons I believe I am doing so well in 4.5 months treating. It took two months on Chinese liquid herbs before I was able to tolerate most all food again. I also was diagnosed with gastroparesis in 1996.
Thanks Phoiph for keeping us all encouraged as we go through these changes with our bodies during this healing process.
Posts: 233 | From AZ | Registered: Jan 2015
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Thanks to you, too, Peimomma, and to everyone here for having patience, commitment, and resolve!
Posts: 1994 | From Earth | Registered: Jul 2013
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posted
Speaking of the gaps diet, I tried the first hardcore part that is expected before I knew I had lyme. It was a disaster. By week two it felt like I had knives going through my legs at intersecting points.
I think it is a great idea, but I'm an ectomorph, and I need tons of carbs. I wasn't getting enough carbs from the veggies in the home made bone,meat,and fat broth soups.
I'm considering just going with some kefir grains and making my own at home that contains no sugar. It has way more good strains than any probiotic out there.
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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posted
I also thought that i needed carbs. I was always a carb person. Rice, potatoes, pasta, bread etc. Somehow i felt my body just needed carbs in order to survive, like a basic instinct. So i just figured i was a carb person. How else was i supposed to get my daily energy and not loose weight?
Well i was wrong. Im now on zero carbs (that means no veggies either) for more than a month and it just feels better! It helps to follow a diet that specifies meals with healthy fat content, like gaps. I believe anyone should be able to do a zero carb diet without feeling like crap. Your body has evolved to do so! So if you are not able to, then something is wrong.
The craving of carbs is psychological, and driven by bad gut flora. They want you to eat all those carbs, otherwise they are going to make you feel crummy!
Kefir is a good starting point, yes! Very cheap and loads of good strains of bacteria and yeasts. But if you keep eating loads of carbs, the pathogenic flora will just regrow over and over again each time you eat.
Remember, gaps also boosts your immune system, so some healing reactions are expected! Maybe for the first time in a long time you were actually feeding and nourishing yourself instead of the bad bugs!? And then your immune system kicked in and started attacking borrelia?
Posts: 385 | From The Netherlands | Registered: Nov 2013
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posted
Right on, S13. Thanks for sharing your experience with the zero carb diet. A couple of months ago I started getting pretty strict with my diet because I was frustrated that I wasn't making much discernible progress.
It essentially turned into a plant-heavy ketogenic diet (lots of avocados, leafy greens, olive oil, coconut oil, etc) but with sardines, grassfed meat, eggs, and bone broth, too. I kept getting sicker and sicker. I emailed Phoiph in a panic because I got horrible sinus inflammation so bad I couldn't dive, and cystic acne started popping up everywhere, but I didn't put two and two together that this increase in plant foods could possibly be the cause. I thought it was "toxins" or that I was just peeling off the layers of the onion..
Now that I think about it, I've always felt sicker when increasing any plant foods (you know how green smoothies became the "thing" a while ago?) yea not good for me. Herbal protocols always make me feel worse (and not in a herxing, it's doing something good kind of way). I understand that this can also be related to leaky gut but I have been working on that for so long and things are fine until I increase plant foods?..
It wasn't until I came upon Andrew Scarborough's personal blog (http://mybraincancerstory.blogspot.com) about fighting brain cancer on a "zero carb" ketogenic diet (CD57 has also linked to his story above) that it dawned on me that the salicylates could possibly be messing with me (Andrew started feeling much better after he removed plant foods).
And haha, smart me, I was applying topical salicylic acid on my acne and it was just getting worse and worse. I stopped that right and switched to a salicylate-free toothpaste and mouthwash (I've been dealing with painful gum/tongue/mouth inflammation) and cut out the avocados, most vegetables, coconut oil, etc. that pretty much took care of a lot of inflammation.
I know this can be kind of a touchy subject because we've been taught "plant good, animal bad" for so many years... But I'm going to try out the animal-based (grassfed/free-range/wild, of course with lots of bone broth and organ meat to supplement...can't seem to find brain in the U.S. though...) ketogenic diet for a while and report back.
I assume that my lack of tolerance for the salicylates in plants is related to mitochondrial dysfunction from Lyme so hopefully with time (and mhbot of course ;-) ) things will heal on their own.
By the way, I am 477 dives in (still 1 hr each day) and it keeps my pain at bay and I feel like my brainfog is getting a little bit better. I plan to increase exercise soon as I don't feel like I am moving enough on a daily basis. It doesn't help that I am on the computer a lot for homework (I am back in school whoo-hoo).
I also want to add that low thyroid was a big piece in my Lyme puzzle. I knew that there was something wrong with my thyroid for years but my then-doctor never tested the right numbers and everything came back "normal" and I assumed that as I healed, the thyroid problem would go away on its own, much like in Phoiph's case. Well it was just getting worse!
A little over a month ago I started getting horrible thyroid pain. It was choking me, making me cough and gag and I felt so flu-ish. I was scared it was hashimotos so I started doing a lot of research (which was when I realized my previous doc had been testing all the wrong things). My doctor now is helping me treat my thyroid and with t3 added, it is like night and day. (Hopefully this is just temporary support while I heal with mhbot?)
I want to thank Phoiph for your continued support And welcome to all the new mHbot-ers. It is incredible to see some of you making such rapid progress.
Sorry this was such a long read, my update was long overdue! Carry on mHBOT-ers!
Posts: 96 | From USA | Registered: Sep 2013
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posted
Spinning122... That a lot of dives. How would you rate how you feel now compared to before you started? You mentioned you are back to school. Is that due to mhbot?
Thanks
Posts: 120 | From Maine | Registered: May 2015
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Yeah spinning I appreciate the long timers coming back and reporting. My progress is slow, but I do believe it is helping, I have days I'm not so sure. This September 3rd will be one year for me - one hour mostly every day.
Posts: 2232 | From USA | Registered: Aug 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I wonder if pain is the symptom that is usually helped first. I don't have too much pain (thank God). I have mostly fatigue, weakness and cognitive problems.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Wow!!! The guy in the article only did 2 weeks of treatment and his symptoms subsided? Is that possible? Now I wonder if this is where people are getting the idea 20 treatments and all will be well.
After 24 years of deterioration in my body it's going to take more than 2 weeks to fix. That's ok cause I'm a patient lady and as long as I see progress I'm staying the course. I certainly didn't get sick overnight so to believe you will heal in a short period of time is not realistic.
The difficult part I'm finding now is I'm in this weird place of not sick as most Lyme people anymore but not a healthy person. Phoiph any suggestions on how to cope in the in between stages of healing? it's not even easy to describe to people where I feel like I am.
I went to lunch with a friend yesterday and tried to explain but she's a healthy person, hiking, diving literally, going to school full time for a Masters. On the other end I don't have all the symptoms like I did in January and before so I don't fit the group of those searching for answers. I have my ups and downs with this therapy but I know what's causing the issues.
And because the healthy people see me more active they think that I'm all better.
Posts: 233 | From AZ | Registered: Jan 2015
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Peimomma...
You are right on about people getting an erroneous impression that mHBOT is a "short term" treatment. It can be short term, and is for many conditions, but not chronic Lyme/illnesses. This was the reason I almost sent my chamber back after 40 dives without overt progress, as there was no other information out there about long term treatment...
Sometimes people have an initial "honeymoon period" where they feel energized by the 02, but that is usually followed by some rocky times as the real "healing and dealing" begins.
I can relate to what you're saying about being in limbo (i.e., not 100% ill, yet not well either).
When I started mHBOT, I had no idea if I was ever even going to improve, much less make it to the finish line. Once I started making gains, I wondered if my progress would plateau somewhere in the middle, and that thought was unacceptable to me. So, I tried not to over-think it (thinking wasn't exactly my strong suit at the time anyway), and doggedly kept getting in the chamber every day...
It was very surreal for me when I started to enter the world again after being homebound and in a "walking coma" for 8 years. I would think I was doing quite well, until I was around non-ill people who's energy seemed so "large".
So many things had changed, (e.g., "smart phones", new bills/coins, construction/urban sprawl, etc.) that I felt like an old person who needed a teenager around to decipher the world for me...lol...
To add to the strangeness, I started to see nieces and nephews who were born when I became homebound (and couldn't tolerate visitors), and were now 5-6 years old...
Making ordinary conversation with strangers seemed inane...I kept thinking, if they only knew how psycho I was just a few short months before, they would begin to back away slowly...lol
Miraculously, at some point, everything starts to mesh seamlessly, and you step back into your life...with many new insights, gifts and rewards that you had no idea were coming your way...
Posts: 1994 | From Earth | Registered: Jul 2013
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