posted
Yikes is right! Enough O2 babe. You are not protecting me by asking Phoiph those deep, inquiring questions, you are just being accusatory and annoying. We are all grown ups here and capable of coming to our own conclusions. I'm looking for useful information and I don't give two sh!#ts whether Phoiph is selling chambers or not. It's not yours or anyone's business what she does. I have found Phoiph to be nothing but helpful, resourceful and caring. I would appreciate it if you would stop this nonsense, it is very unproductive.
Posts: 20 | From Longmont, CO | Registered: Nov 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I'm so bummed. I wanted to try this but my lyme specialist shot it down. He said that oxygen is bad for babesia (makes it grow). He also said that HBOT works for people who just have lyme, but not so well for people who have co infections.
But he did tell me that it does other things that are beneficial. So maybe it boosts the immune system into gear so people can fight what's making them sick. Clearly Phioph has had success with it.
He also told me that he has seen people who tried it and were told to ride the herx (keep going), but it just made them worse (maybe they did it too high--not sure?). He also didn't recommend doing mild HBOT. :(
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Hi Catgirl...
I had severe babesia and bartonella.
Here is a quote from LymeMD in response to a question posted on his blog about Babesia and hyperbaric:
"Jeera" said... "...Great to know mild hyper chambers work too, but I am concerned about co infection, are not they will thrive in oxygen rich body?...like babesia, bart?
Couple of patients report of babesia , bart symptoms increased, pre hyperchamber babesia negative, but post hbot babesia positive and severe fatigue and pain in legs...
I am anxious to know your views on these..."
October 29, 2013 at 4:32 PM
Lyme report: Montgomery County, MD said... "...I know this answer is a bit long-winded. This question keeps coming up over and over again. I do not know here this myth came from. But is absolutely false. I fear it may be keeping a lot of patients away from a treatment which might be very helpful.
If this were true nobody would get better since virtually every Lyme patient has co-infections. People do Herx with HBOT so getting worse for a while is part of the process.
Oxygen does not act like a fertilizer to promote the growth of various aerobic pathogens/parasites.
What is important to hear is that HBOT creates a milieu of: a natural antibiotic, decreased swelling, improved immune function overall, healing of diseased tissues, increased glutathione and improved mitochondrial function.
HBOT is used to heal severe non-healing wounds in diabetics, patients with gangrene and other non-healing surgical wounds. All of these infections have a combination of anaerobic and aerobic bacteria. The treatment kills both. And very importantly, HBOT helps break down biofilms..."
posted
Oxygenbabe, I deleted your most recent post for the following reason: you can post what you know here, but you are not allowed to harass another poster here, namely Phoiph.
Lymenet is a place where everyone discusses care options and we need to keep that conversation civil and considerate. Please help us keep it that way.
You're welcome to pm me if you want to discuss further.
Posts: 13155 | From San Francisco | Registered: May 2006
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Just to clarify...
I do post models, brands, and manufacturers names, but I don't usually name specific vendors on the public forum unless someone PM's me...in which case I give them all the resources/contact information I currently have access to.
There are several reasons for this...First of all, sometimes that would involve posting names of private sellers, reps, etc., and I don't post personal information.
Second, some of that information changes over time, and I don't want people referring to a post that is obsolete later on...in other words, I may currently have found a better resource.
I also try to make any connections I can with vendors, NOT for commissions or personal gain, but because the greater the number of people I refer to them, the better the chances that they will work with me to offer a better discount to the people I refer, and ultimately, this furthers the mission of the hyperbaric project...which is to help people access mHBOT more affordably...
Posts: 1982 | From Earth | Registered: Jul 2013
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posted
I have a friend with lyme who also has chemical sensitivity to a lot of things. She wants to use my chamber but the overwhelming smell of plastic makes her ill. Any suggestions?
Posts: 20 | From Longmont, CO | Registered: Nov 2013
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Hi Toni...
I was also chemically sensitive when starting mHBOT, and "off gassed" my chamber and mask for a time period before using it, by letting it sit in a well ventilated room for a several days.
It is less of an issue for most people when you are actually using the chamber, as you are breathing 02 through the mask, and fresh air is being circulated through the chamber.
However, I have heard of people with severe MCS using custom masks made of alternative materials such as stainless steel.
Although I haven't needed to try this, a solution was recommended to me by the manufacturer that can be used on a chamber to reduce the smell:
1. Sponge wash bladder (vinyl portion) of chamber with a diluted detergent like "Mean Green" or "Simple Green"
2. Sponge rinse THOROUGHLY with water
3. Let dry
4. Sponge wash with white vinegar
5. Sponge rinse THOUROUGHLY with water
6. Dry w/lint free cloth
As I began to get well with mHBOT, the chemical sensitivity symptoms faded away and became a non issue. I don't have it anymore.
Of course, as always, your friend should be cleared for mHBOT and 02 by a physician, and have a prescription for both before starting mHBOT...
Posts: 1982 | From Earth | Registered: Jul 2013
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
There is an environmental health clinic in Texas (can't remember the name off-hand) that sells ceramic masks for use with oxygen concentrators, and also tubes that, while plastic, are better than some other plastics, designed for those with MCS.
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Does anyone use their O2 concentrator for O2 therapy other than using it while in the chamber? I wonder if it would help my daughter's fatigue. I'm not asking for medical advice, just if anyone has found O2 therapy helpful.
Posts: 20 | From Longmont, CO | Registered: Nov 2013
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
Before I knew I had lyme, I used one for 2 hrs/day at 5-6 liters/minute for 4 months or so, and it was indeed helpful. Not absolutely amazing zowee, but helpful. It did improve energy. It improved oxygenation in the blood, and that is a good thing. Perhaps it was contributing to bug killing on a very low level. It did reach the limit where it was no longer helpful.
Posts: 1927 | From se usa | Registered: Mar 2010
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
MichaelTampa...
Just to clarify...you were using an oxygen concentrator alone, without a hyperbaric chamber, is that correct?
Posts: 1982 | From Earth | Registered: Jul 2013
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
up
Posts: 3528 | From US | Registered: Apr 2007
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
quote:Originally posted by Phoiph: MichaelTampa...
Just to clarify...you were using an oxygen concentrator alone, without a hyperbaric chamber, is that correct?
That's correct.
Posts: 1927 | From se usa | Registered: Mar 2010
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CD57
Frequent Contributor (1K+ posts)
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posted
Good to know Michael, thanks.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Update: My 19 year old daughter just completed her 30th dive in our Respiro 270. She dives 5 days a week with 2 days off. She is in college 25 minutes away so this schedule is the best we can do for now.
She is also taking ASEA. I just got a text from her and she is herxing big time. Lots of very bad symptoms. Back spasms, nausea, worse fatigue than usual, headache, painful sensitive skin...
She is very toxic and won't agree to colonics so after talking online to my support group, I will be starting her on Sonne's #7 and organic psyllium husks to help detoxify her. This combo is suppose to be the next best thing to a colonic.
Many of them mentioned that Welchol has helped them detox but that is a prescription item and I'm not sure her doc will write it. Since moving to Colorado we do not have a LLMD, just a primary care doc who is lyme illiterate.
Mon and Tue are her days off from hyperbaric so hopefully she'll get through this and dive on Wed.
I'll keep you all updated. Toni L.
Posts: 20 | From Longmont, CO | Registered: Nov 2013
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posted
What about alkaseltzer gold or finding complimentary doc for glutathione or oral redi-sorb glutathione
Posts: 366 | From Kalamazoo, Michigan | Registered: Jun 2008
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posted
I'm not familiar with alkaseltzer gold or what it does. Please explain.
She does take glutathione and the ASEA she takes increases your own glutathione by 500%.
Posts: 20 | From Longmont, CO | Registered: Nov 2013
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
would she agree to do a coffee enema? this would help big time as well. kind of a pain to do, but worth it.
is she taking abx?
Posts: 3528 | From US | Registered: Apr 2007
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posted
Dr. H. gave his treatment for a herxheimer reaction at the 2010 lyme conference.
I thought it might come in handy for those of you who have never heard of it.
Here it is:
Herxheimer reaction (from 2010 Lyme Conference):
Take-home message: DETOXIFY YOUR LYME PATIENTS!
It does NOT matter what antibiotic you give people, they will NOT get better without detoxification
For Herxheimer reactions:
2 Alka-Selzer Gold (no aluminum) in 8 ounces of water with lemon or lime followed by 6-8 capsules of glutathione or 1500 mg or oral liposomal glutathione.
70% will feel better in hours
On the topic of water: Dilution is the solution to pollution. This suggests that in order to help our bodies detoxify, we must drink more water
posted
Thank you for your input. We'll try the alka seltzer and glutathione. Coffee enemas are a no go. Does anyone else get fevers while herxing?
Posts: 20 | From Longmont, CO | Registered: Nov 2013
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posted
Tried the alka seltzer and glutathione. She is on her third day of 103 fever and is absolutely miserable. Fever has never been one of her herxing symptoms. ?
Posts: 20 | From Longmont, CO | Registered: Nov 2013
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posted
Hi, just want to chime in and let you know that we are beginning mild HBOT today at home with a rented chamber. My 24yr old son and I will be using it.
He has been sick since age six, dx at 10 with Lyme, and later with Bart and Babs and has been in treatment since. We've been seeing one of the top LLMDs for several years with some improvements but then relapses. We've tried many modalities except the oxidative therapies.
He has had a continual headache for 12 years which has been resistant to any treatment. Lately, his herxes are so intense that we're giving abx a break.
I also have Lyme and Babs and Lyme-induced RA, and am doing fair on mino and herbals but will be treating myself as well.
I will check in frequently and am hopeful about this modality but know it will take time and commitment. Thanks to everyone who is participating here.
Posts: 688 | From Florida | Registered: Aug 2001
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posted
Hi Toni, Sorry to hear that your daughter is having such a rough time! I would think that having that high a fever for three days might indicate a viral infection, although it is possible to have some fever with herxing, I think--but that sounds unusual to me.
You didn't mention if she has co-infections? My son has experienced fevers immediately after treating aggressively for Babs--don't know if it's been documented much, but it seems to have happened with him.
Whether viral, bacterial or a herx, I would take it easy for a few days and if the detox remedies aren't working she may just need to rest and get plenty of liquids. Hope this passes soon--keep us posted.
Posts: 688 | From Florida | Registered: Aug 2001
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Toni...
I just emailed you...
I don't believe this is a "herx", and think she should go to urgent care to be checked out just as a precaution.
With the high fever, headache, and the fact that she's in college, they may screen her for spinal meningitis, just to be on the safe side.
I know that as my immune system came back "on line" from mHBOT, I had a few flu/colds from hell...which is actually a good sign, but think in this case it should be checked out regardless...
Posts: 1982 | From Earth | Registered: Jul 2013
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posted
Her fever has not stayed at 103 but it fluctuates up and down. Today it has not gone above 100, BUT her normal temp is 97.4 so it's still up there. She took some advil and tylenol and it's at 98.1 now. I'm waiting for a call from her dr.'s office, which will most definitely be a nurse. They know nothing about lyme, herxing, detoxing or anything concerning chronic illness.
She had the meningitis vaccine when she moved into the dorm but that is still a concern.
I did some research into "herx and fevers" and some people to get fevers when they herx. It's all a bit disconcerting and I'm a wreck waiting for the nurse to call.
Thank you for your input and support. My hope is she comes out of this a little better than when it started (Monday morning).
Posts: 20 | From Longmont, CO | Registered: Nov 2013
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posted
Went to the doc yesterday and he doesn't know why she has a fever other than it's viral or an infection. They are doing CBC and urine and a mono test.
Today she hasn't had a fever but she is sweating a lot. I don't understand that. She drinks lots of good water. Everyday I give her some detox supplements but she's always queasy so it's hard to take sometimes.
I haven't seen her this sick in a while and this kid has been through hell. I really hope she doesn't have mono on top of lyme.
Posts: 20 | From Longmont, CO | Registered: Nov 2013
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Toni,
I think it's could she's sweating.
I do so when I'm really sick, and my body is finally kicking in to fight.
It's killing microbes, taking toxins, and kicking butt.
Keep her hydrated.
Hang on, it should be over soon-
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
"good" not could........ugh
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
Thank you so much for your support through this rough patch. Olivia's blood work is back and she has Mono. Fatigue on top of fatigue. This kid can't catch a break.
We had to stop mHBOT until she feels better. I suppose you lose progress you made when you stop. This is the second time she's had to take a break from it due to illness.
Posts: 20 | From Longmont, CO | Registered: Nov 2013
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Oh my gosh Toni! that is just awful. Mono is EBV I think.
On the bright side, perhaps it is a good sign that she is getting the mono, as it means her system may have been buoyed by the mHBOT enough to mount a response to this virus? Kind of like IRIS in AIDS patients when they are on road to recovery?
Please keep us posted. Phoiph will hopefully stop by with some good info.
Posts: 3528 | From US | Registered: Apr 2007
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Toni and I have been in touch...
Toni's daughter will continue using mHBOT, as it has antiviral properties and increases white blood cell production to assist the immune system in fighting the virus.
I had a raised EBV titer (activated EBV) when I started mHBOT also...many people who are very ill with Lyme do.
Up to 95% of the general population carries EBV, which usually lies dormant, but can become activated when the immune system becomes compromised by Lyme or other chronic illness.
There is also some suggestion that EBV might work synergistically with Borellia...
Posts: 1982 | From Earth | Registered: Jul 2013
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Thank you to everyone here for posting their experiences with mHBOT. I am considering one for the home and was brought here via a google search for answers. This thread has been enlightening to say the least.
I noticed that the Vitaeris is popular with folks... I was wondering if anyone has used one of the Healing Dives versions or worked with the company before.
I favor Oxyhealth, because although they may be more expensive, they have been around the longest and have a perfect safety record. Their chambers are also easier to use, as they don't involve buckles.
The Vitaeris is popular because it is the largest chamber, and is often used with children with autism, because an adult can "dive" with the child.
I use the Respiro, which is the middle size. It is a personal choice based on comfort level and cost.
I have also worked out an arrangement with Oxyhealth where I am granted a discount on new and used chambers. I pass a portion on to the buyer, and the rest goes into a fund held by Oxyhealth to be used toward a chamber(s) to be placed in the community (for qualifying persons who can't afford treatment to be used on a donation basis...donations to go toward rental of space and repairs). It is a win-win situation.
I am not a sales rep, nor do I sell chambers or concentrators, and I do not take commissions. I do, however, help people find creative ways to access chambers through cooperative use and/or financing. The above is only one option, there are others to consider.
I do this because I became well via mHBOT, and feel it is a underutilized and misunderstood treatment option.
You can PM me for more info if you like...
Posts: 1982 | From Earth | Registered: Jul 2013
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CD57
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Member # 11749
posted
that is great re Toni's daughter Phoiph, thanks for the info! I hope she gets it under control very soon.
Posts: 3528 | From US | Registered: Apr 2007
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I am going to confirm this in writing, but I spoke with Oxyhealth twice in the last month. Nobody there knows anything about this. Those who would know said there is no such thing.
In regards to: "I have also worked out an arrangement with Oxyhealth where I am granted a discount on new and used chambers. I pass a portion on to the buyer, and the rest goes into a fund held by Oxyhealth to be used toward a chamber(s) to be placed in the community (for qualifying persons who can't afford treatment to be used on a donation basis...donations to go toward rental of space and repairs). It is a win-win situation."
They said they don't have such a fund, and that it would not be legal anyway (to grant one person a discount, and use half the discount for a fund--for whom? and how do they "qualify"). But I will follow up on this in writing.
Posts: 2276 | From united states | Registered: Jun 2004
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
O2 babe.....PUH-LEASE don't start again......
Posts: 3528 | From US | Registered: Apr 2007
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Oxygenbabe...
Earlier in this thread, I offered you a chance to PM me, so I could give you the rep's name at Oxyhealth that I have the agreement with, so you could confirm the arrangement and put your suspicions to rest.
You refused.
Posts: 1982 | From Earth | Registered: Jul 2013
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posted
This discount arrangement with Oxyhealth is true and I personally utilized it.
I received a discount on my chamber of which a portion was set aside in a fund for future use to put a chamber in a needy community.
I have a respiro. And I make my final payment on it tomorrow.
I think it is one of the best things I have done to help me recover from chronic lyme. You could not get me to return that chamber at this point.
I am extremely grateful for the opportunity to purchase it at a discount with the help of Phoiph.
Posts: 233 | From Hudson Valley | Registered: Jun 2010
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posted
mbdq, glad to hear that you are happy with your chamber. I saw your post from February on your progress in another thread. If you feel like it, I (and I'm sure others) would love to hear your update. So glad that you are seeing progress!
I, also, want to say that Phoiph has been instrumental in helping us get set up with a chamber. Even though we didn't end up getting it through her, she is continually supportive in helping us figure out logistics--I appreciate her ongoing help very much.
Posts: 688 | From Florida | Registered: Aug 2001
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Sorry, but I will have to confirm it in writing from Oxyhealth. That's fair.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
I too received a substantial discount from Oxyhealth as a direct result of Phoiph. Mbdq, can you please tell me where I can read more about your story here on Lymenet?
I just received both my Chamber from Oxyhealth, and my concentrator via another company a little over a week ago. Phoiph, has also helped me every step of the way (IE), everytime I have a question or concern(-: I will try to keep you guys updated on my progress every couple weeks.
After completing "Seven Dives", varying in duration from 1 hour, to 30 minutes I have experienced some "Flares or Herxeimer", like reactions which are to be expected.
I have decided to cut my dives back to 30 minutes @ five days a week until I can tolerate the "Flares or Herxeimer" reactions.
I purchased a Solace 220 directly from Oxyhealth, and an Airsep concentrator from another party. I'm following for the most part a "Paleo" based diet and drinking lots of water. At present time I am for the most part homebound, only leaving the house when it's absolutely necessary.
[ 03-20-2014, 12:43 AM: Message edited by: Robin123 ]
Posts: 50 | From San Diego | Registered: Jan 2014
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posted
I think it should also be noted that everytime, I have a question or concern Oxyhealth has been very supportive as well.
I really looked around with the help of Phoiph, before ultimately going with the "Solace 220" as previously stated from Oxyhealth.
I learned very fast much like all commerce (IE) prices change regularly, Not all chambers are created equally, and last but not least you get what you pay for just like anything else!
It was really nice to have someone like Phoiph, helping me out on an item which is fairly expensive.
On the days I felt well enough I called various companies, middlemen, etc for information pertaining to chambers. With a little research anyone...even those of us with Lyme induced Encephalitis can see this is a fairly "Large Business".
With the aforementioned being said, I'm not saying someone couldn't possibly be helped using another companies line of chambers...as I'm sure some have.
I just knew for me personally I felt comfortable knowing the chambers history, warranty info, and how I would ultimately pay for the chamber when the time came.
I also know that each and everytime I have had a question "Post Sale" in regard to my chambers performance Oxyhealth has been more then helpful.
I'm learning as much as about hbot on the days I feel like my "Brain Fogg Engulfed", brain will allow me to. On the days I can't figure things out on my own it's nice to know that I have both Phoiph, and Oxyhealh as resources....oh and Lymenet as well!
[ 03-20-2014, 12:45 AM: Message edited by: Robin123 ]
Posts: 50 | From San Diego | Registered: Jan 2014
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posted
O2babe, I appreciate that you continue to share your knowledge and resources with us, but I'm not quite sure why you are so hellbent on vilifying Phoiph. She is not the fraud you are making her out to be.
I am incredibly grateful to Phoiph for all that she has and continues to help me with, and yes that includes a discount on my Oxyhealth Respiro.
We are so lucky here on Lymenet to have people like Phoiph who have recovered and continue to reach out with the goal of helping others.
I know that with my Lyme brain and exhaustion...I'm in horrible condition, I would not have been able to put together the chamber/concentrator if it weren't for Phoiph's support and extremely useful set of directions.
---- Back on topic, I have completed 38 dives and continue to enjoy little to no muscle/joint/bone pain. No improvements elsewhere, but I am only starting on this journey.
Thank you to everyone who continues to update us on your/your loved one's progress!
Posts: 96 | From USA | Registered: Sep 2013
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