CD57
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I don't....it was mentioned on another thread, I think it was an informal observation noted in Dr JS's books....
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oxygenbabe
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I'm not on lymenet often so not seeing some of your posts, Poiph. Since it's nearly 2014 and my first hbot was in 2001 (January), I researched it very intensively. I was speaking with a researcher. I spoke with every major researcher in the country (not clinic owners) and did thorough investigation. I am not going to argue with you. After all my research, it's clear to me it is suppressive, even at 2.4 ata, and not borrelecidal (sp?). That doesn't mean it's not really useful. It's great adjunctive therapy. And in fact I think 2.4 ata is just too high, for the benefits. I'd do under 2.0 ata anyway.
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oxygenbabe
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A nonrebreather mask supposedly facilitates oxygen uptake but I don't like them. A typical plastic mask used in the Oxyhealth and other similar chambers leaks, so it provides about 50-60% oxygen. A cannula might work a little better, who knows, but probably similar.
You must contrast that with a professional chamber at 50 lpm with 100% oxygen from tanks.
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oxygenbabe
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Fife did one small study and later admitted it was not definitive. I don't put much truck in Fife's small study.
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oxygenbabe
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Fife did one small study and later admitted it was not definitive. I don't put much truck in Fife's small study. As to the other study, were they on antibiotics at the time? Most people doing hyperbaric in clinics use it adjuntively, added on to antibiotics, both IV and oral. I didn't because I can't tolerate antibiotics.
Anyway, no point in arguing. Have said my view after 13 years. I like the mild chambers. I think they need to be used longterm and almost always are adjunctive. Of course everybody is individual in their immune system strength and in the strain(s) of borrelia. Some are mild. Some are self limiting. Some are really virulent. Miramatoi is known to be more virulent for instance. Etc.
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Phoiph
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Oxygenbabe...
I'm not interested in arguing either...we are all here to learn from each other.
For that reason, I was just wondering if you had a reference for the study you mentioned (twice) or other research resources related to your viewpoint that hyperbaric is suppressive, only an adjunct, and does not kill Borrelia.
I am already well, and don't need any convincing about hyperbaric, but others might...and my goal for volunteering my time here is to provide as accurate a picture as possible so that people can make informed decisions...which I believe means backing up strong statements with resources whenever possible...
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If so, im not sure this study applies to mHBOT. The study uses greater pressure (2.0-2.85ATA) which is not necessarily beneficial for lyme treatment as Phoiph previously mentioned: http://www.netnet.net/mums/Harch2.htmPosts: 381 | From The Netherlands | Registered: Nov 2013
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CD57
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yeah I think that's it. Thanks!
Wait a second....question....if you buy a mHBOT chamber and O2 concentrator....do you still have to wear a mask inside the chamber???
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Yes
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CD57
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OMG, so you are lying inside the chamber with a mask on? wow. Any way out of this? I did not have to wear a mask when I dove at a clinic at 2.4 ATA but they had a hard shelled chamber so perhaps that is why?
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You need to wear a mask to breath a higher level of oxygen. It really isnt bad at all. Watch a football game and you will see players doing this on the sidelines after a long run. You are using an oygen concentrator. The air inside the chamber is not 100% oxygen.
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CD57
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oh i see. then how do you know you are getting up to 1.3 ATA inside the chamber? I thought that was the whole point, to have your whole body bathed in 1.3 ATA, not just breathing in the equivalent?
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1.3 is the equivalent atmospheric pressure provided by the pressure equivalent to 11 feet under water. Even without the supplimental o2 provided by oxygen compressor the normal oxygen of ambient air is purported to increase. The compressor provides more o2 to chamber both through mask and by definition of supply. This is why it is important to get a compressor that delivers enough psi and lpm. At least 8 lpm. There are a number of them that are only at 5 lpm. Important spec if you buy a used unit albeit you can get a new concentrator meeting specs for around $1300.
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oxygenbabe
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Phoiph, it's not a viewpoint, it's informed by research--and it's simply a fact imho. As to you're well, I assume you are doing ongoing treatments. If you stop for six months entirely and feel just as good, please report it here, that will be a novel report and interesting.
Borrelia are microaerophilic, not anaerobic. They also exist in several forms and some are pretty much inert metabolically. Those would be cysts and what seem to be granules/seeds (like syphilis, ketes have been seen throwing off these granules/seeds which might be comparable I suppose to eggs). In those forms they are more resistant to any killing or suppressing mechanism. Active borrelia can be slowed or suppressed by hbot, but there is no evidence they can be killed especially in the tissue reservoirs where they often nest, which even with hbot are low oxygen (bone, ligament, tendon, etc). Just as refractory osteomyletis usually requires hbot at 2.4 ata plus antibiotic therapy (and *those* bacteria are anaerobic generally, not microaerophilic), chronic lyme may be viewed in the same way.
You might say that you are in remission with continued treatment, and that you were one of the lucky ones, since a mild chamber alone with no other treatments doesn't generally lead to remission. However, your immune system might be strong and you might have a milder strain than some. There are a variety of strains and some are far more disabling than others--even though they all might make someone sick.
You need to do your own research, I don't have time and don't have references at the ready from 10 years ago, when I was in NY. You need to do your own research at hyperbaric medicine centers. You could call some, at universities with research facilities and doctors that specialize, to get a sense of what 1.3 ata with about 50% oxygen at about 8-10 lpm per minute would do in terms of saturation of which tissues to what extent.
'Nuff said. I've always said hbot is underutilized although because it's only suppressive, I don't like the higher pressures that only one small study by Fife set out. I think a month or two of 5-7 days at 1.5-2.0 ata is sufficient, with antibiotics if you can, and then maintenance with a mild hbot. I can't address this again I just don't have time.
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oxygenbabe
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I should add, the cysts will degrade over several years. Nobody knows how many but at some point they won't be viable. Cysts can give birth to multiple daughter spirochetes. And of course those spirochetes can encyst (by wrapping around themselves essentially) and those will be viable for several years etc. The granules have really not been studied in lyme, and not in depth in syphilis, but they are likely sources of spirochetes, too. Whether they stay latent and dormant really depends on a lot of factors including life stresses, immune system, reinfection, any kind of infection, surgery, anesthesia, stress etc
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oxygenbabe
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The mask is no big deal. It's a soft leaky plastic mask and not unpleasant. Rebreathers are kind of unpleasant. Cannulas tickle and may not be as effective, not sure. In a Vitaeris you can sit up, play with your ipad, or one guy I know rigged up a tv so he could watch movies while lying down with head on pillows.
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To me, people are trying to debate "science and research" regarding hyperbaric that does not exist yet. There are no well-designed, properly controlled studies on the effects of hyperbaric oxygen on borrelia, co-infections etc. We do not know correct depths, time of treatment, mechanism of action, etc.
We can piece together ideas, look at work in other species and organisms, read blogs, listen to patient reports, etc but none will give us a definitive answer on how to cure this thing we call lyme.
This is an extremely complex illness, and especially when undiagnosed and given the opportunity to wreak havoc on multiple body systems with many forms of virulence, it can seem insurmountable.
To some degree, we are all taking risks and experimenting with and without Dr's. support with this illness. Whether its long-term antibiotics, herbs, rife, parasites, chelation, hyperbaric, you name it.
Every person and every person's illness is different. Unfortunately with long-term, chronic illness we must take our health into our own hands and CHOOSE what we feel is best for US.
Hyperbaric may help some or a lot of lyme patients, for others its strictly antibiotics, or rife or photons or ....
In the end, we each need to make our own decisions about our health, take a risk based on what we know to date and how we feel, and hope it helps in the end.
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Amen mbdq
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Phoiph
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Agreed mdbq!
Oxygenbabe...I have also done extensive research, and understand everything you are saying regarding cysts forms, and the tenacity of Borellia in general (by the way, far from a "mild" strain, I had the European, neurological Garinii strain, implicated in ALS, Alzheimers, Schizophrenia, etc.).
This is why I maintain that mHBOT must be done frequently, consistently, and long-term to be effective. I have been doing mHBOT for over 2-1/2 years, (800+ dives) and don't plan on quitting any time soon...that would be insane. I will likely use my chamber at some level indefinitely, as I believe it offers benefits above and beyond treating Lyme Disease.
(For the record, I was without my chamber recently for 5 weeks straight due to a repair issue...and felt fine...no symptoms of relapse whatsoever.)
I believe that eventually, cyst (and other) forms will periodically morph into forms that are vulnerable to mHBOT and a now-healthy immune system, or they will degrade over time.
My concern is that mHBOT is not always used this way (people often think of it as an "adjunct", and to be used infrequently and/or for a limited number of treatments), and I believe this results in treatment failures.
Meanwhile, I am happy to say that relaxing in a chamber for 1 hour per day is a small price to pay to have a full, active, med-free life back...even if it were to be a life-long commitment...
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oxygenbabe
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Phoiph, you're an N of 1. I do know a Lymie who sells them and has done it daily for years. He has lots of health issues and thinks some are Lyme related and some are not.
It's definitely individual. Mostly hbot deep and mild are adjunctive for any condition whether stroke, osteomyelitis, Lyme, cerebral palsy, diabetic wounds, surgical recovery etc. it just is not seen as a curative therapy in the literature. And it makes sense your treatments are ongoing. The guinea pigs relapsed after three months. I agree an hour a day to have a life back is a small commitment.
Virulent strains-- I was thinking of the strains Luft wrote about and of b. mitamatoi
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oxygenbabe
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By the way, phoiph, why don't you go public with your real name and story? If you honestly are in this to pay it forward and not to earn commissions. If you think it's curative used daily long term. I admit to wondering why you are ardent bit anonymous.
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This thread has become very disparaging. This is not a contest to see who is right and who is wrong. I think it has been said numerous times that everybody reacts differently and chooses their treatment. I for one appreciate both Phoiph and Oxyenbabe observations and advice. Both of you have been gracious to answer direct PM's for me as well as direct emails. Maybe we all need to come up for a little oxygen Posts: 366 | From Kalamazoo, Michigan | Registered: Jun 2008
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Phoiph
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quote:Originally posted by oxygenbabe: By the way, phoiph, why don't you go public with your real name and story? If you honestly are in this to pay it forward and not to earn commissions. If you think it's curative used daily long term. I admit to wondering why you are ardent bit anonymous.
Oxygenbabe...
It is inappropriate to attack someone's integrity because they disagree with you.
I am not sure what you mean by my being "anonymous"...aren't we all anonymous on Lymenet...or is your real name "Oxygenbabe"?
And yes, your right...maybe I should go public...write a book or something...I might make more than the imaginary "commissions" you suspect I am taking...
I think it would be best for us to agree to disagree, and refrain from any more contact...
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They are a bit cheaper than OxyHealth, and ive heard you can get an upgrade to 1.5bar for something like 1K$.
I believe some of their components are actually manufactured in Europe which means less import taxes if you live in a european country.
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TNT
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I know opinions can get pretty strong about issues related to Lyme disease/treatment, but we cannot attack one another... because we need the valuable input from one another.
Everyone's experience is valid, and just because one person found this or that helpful and another didn't, doesn't mean it's not true.
I want to say that I really appreciate Phoiph coming to lymenet to share her amazing recovery and how that happened!
I also appreciate what Oxygenbabe has contributed on the subject, especially the input on some of the practical/technical details concerning mHBOT and her experience with higher pressures.
If we are going to get a good understanding of this treatment modality, we need everyone's respectful collaboration-otherwise we all will suffer!
I think mHBOT holds promise for each one, and hopefully in a few months we will have more feedback concerning this. Until then, please keep your friendly comments coming--personal updates, new info, studies, etc. And continue to lend that personal support.
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Im curious TNT, how is your treatment coming along? Still a rough ride?
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Phoiph
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Hi S13...
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Phoiph
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Hi S13...
It is illegal to sell a pressure upgrade kit along with a chamber...FDA only approves soft chambers to 1.3 ATA.
Chamber dealers are also not allowed to sell oxygen concentrators along with chambers...as this puts them into a different medical class which is not FDA approved.
Oxyhealth voids their warranties on any chamber that is upgraded to a higher pressure.
The company you mentioned has had safety issues that you can research before you make a decision...
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Ok, perhaps the upgrade kit is non-FDA country only option then?
I will research the safety issues. This is an important consideration for sure!
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TNT
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I am doing daily dives with a concentrator (20 psi, 10 lpm) in a soft chamber (1.3 ATA) for an hour each day. Today will be my 29th dive (consecutive days).
Yes, still a very tough time. But I don't think because of the hbot. I have been on low dose ABX for a few months now, and don't feel like we are getting the right combination.
Everytime I increase my protozoa treatment, or add something (even extremely low dose) for this, I get a major flare. And then I waste away a little more, and feel less and less human. More bone and joint deterioration and pain, more coordination deterioration, more muscle pain, twitching, and muscle wasting. And this is a weekly pattern.
I have lost 20 lbs. and an inch of height with a very gradual wasting and worsening of physical and mental condition since a "reaction" to Flagyl 2 years ago. I now face a weekly cycle flare, and a resulting deterioration each week.
I am not able to properly transcribe what has and is happening to me. My brain gets overloaded every time I try to describe this to someone. Suffice it to say that I am wasting fast for someone who is in their mid thirties.
I have suspected all along that treating my protozoan infections has allowed the bartonella to come out and that my symptoms for years have mainly been bartonella (looking back). My opinion is that it has gotten out of hand, and ripping me to shreds. It could be the lyme as well. But my feeling is mostly bartonella.
I have been taking low dose amoxicillin and bactrim for a few months now. I have also been taking low dose plaquenil for a couple months with that. The week before Thanksgiving, I upped my Plaquenil to 100mg daily, and have deteriorated quickly again. So, I stopped that and have added low dose Cipro to the mix, and honestly, for the first time in 2 years I feel like maybe this is helping.
(I have tried treating bart. with monotherapy zithromax, bactrim, and even a week of Rifampin-each one helped some, but didn't stop the slide. I also have not been able to come down off 20 drops 2x daily of A-Bart for many months).
With methylation issues, MCS, food sensitivies (now), and the lack of real help from any adjunct, and etc, etc, etc, my case is very difficult and extremely complex. But I feel like the main issue has probably been an out of control bartonella infection that we can't get on top of.
I'm sorry for the muddled, long post. Like I said, to try to understand all this and to put it into words is really beyond me at this point. And, I have been pretty much at the end of my rope for a couple years and the doctors have not known what to do, and I have all but given up, and friends and family don't know what's going on, don't understand me, and don't know how to help. That said, family and friends have been willing to carry me financially. But they honestly don't know how to relate--they think I'm some psychiatric case to a certain extent.
The mHBOT has been somewhat of a last ditch effort, but I honestly don't feel it has helped yet. But (and I hate to say this because of a let down, and for getting other's hopes up) I think that this Cipro may be helping. And I feel strongly enough about the potential of mHBOT (from what I have researched myself) that this will be a very synergistic adjunct to my healing and restoration if things start to turn around. If things do turn around at this point, I will have a hard rehabilitation and may not ever be able to get back to a normal life.
So, to answer your question more directly. I do not feel hyperbarics are helping at this point. But I will continue until I cannot get in and out any more. Time will tell....
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I can relate with you TNT. I think my case is not as far advanced as yours, but i see the same pattern. For me too it was bartonella that has been causing me most problems, but it wasnt until i started treating babesia that bartonella really flared up. Before babs treatment i was still able to work and drive in my car a bit. Now im at home and cannot even get my own groceries.
Bartonella sucks! Or is it BLO? No one knows. Good thing you are still tolerating cipro. I got tendon issues after 1 dose. Now im on rifampin for 4 weeks and it is very slow going. I hope the hbot can give the additional push i need to get the infections under control.
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TNT
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I want to add that if mHBOT does help, I will attribute trying this treatment mainly to Phoiph coming back to lymenet and making this modality more visible to others because of her own experience.
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TNT
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Hi S13,
I know some people can't handle the fluoroquinolones because of the tendon toxicity. I was previously on Levaquin (a few years ago) and didn't have any trouble then.
I probably would have some issues now if I would start out with a full dose like I did with the Levaquin, but I start everything at really minute doses now. I took 125mg of Cipro once a day for the first two days to begin with.
It's extremely weird, but my tendons really feel better since starting the Cipro. For months, the nodules were getting worse and worse (and WORSE!) until they became strings of little painful nodules tied together. I could (and still can) feel the nodules on the tendons move across the bones when I move my feet. But the pain is less!
Yea, Bartonella is a horror! I believe like Dr. S that it is a world epidemic. I have analyzed this to a fault, but I see a strong correlation of Parkinson's to bartonella infection.
And why else is road rage and psychiatric cases on an alarming increase? I don't say these things to very many people because they think I'm off my rocker saying things like this.
Well, I'm getting a little off the subject now....but hopefully mHBOT will prove to help with my bartonella and my healing.
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oxygenbabe
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My question was valid. If someone claims to be cured (actually in remission with ongoing sessions, and repeatedly questions input that borrelia is not killed in vivo even at 2.4 ata in a chronic Lyme patient, claims to receive no commissions and set aside half in a pay it forward fund (I received a commission two years ago for recommending the mhbot to a doctor who then bought it btw so I know commissions are routine) I'd like to know their real name. Generally even then I take cure stories with a grain of proverbial salt even if true because of how different we are.
I want to emphasize its an excellent underutilized therapy generally and I'm glad if it helps anybody here.
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CD57
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TNT, possibly your bartonella is a problem because you have done mostly monotherapy for it. You really need to do double intracellulars for bart, Buhner says it, and all the LLMDs. I think Dr H in NY discovered this several yrs ago. So perhaps you should consider one of the Dr H combos for it: Cipro/mino/Plaquenil Cipro/doxy/Plaqenil Bactrim/Rifampin/Zithromax
there are several listed in his new book. Please check it out. It could be very beneficial.
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TNT
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Thanks, CD57, I have done triple ABX treatment for short periods, but had to stop because of all the gut issues.
But I now wish I had stayed the course somewhat longer the times I was treating more aggressively.
And... if I had not used Flagyl, I believe I would definitely be in better shape to hit things more aggressively.
According to some labs, it does appear that my fungal load is minimized at this point, so that is in my favor hopefully.
A local friend has a copy of his book, and I should be able to read through it soon. I will definitely check that out.
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CD57
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Perhaps you can do low doses of triple combos?
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CD57
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Perhaps you can do low doses of triple combos? I wonder what it was about the Flagyl that set things off, that is interesting.
And you notice a flare every time to try to do antiparasitics, which is also interesting. Maybe it's not bartonella?
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So would a combo of Mino and Rifampin be considered double intracellular? Or should i add bactrim/septra ds for example?
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CD57
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mino and Rifampin is a double intracellular. Some docs add a third, or Plaquenil to alkalinize the intracellular compartment.
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Ive decided also to take the "dive". It will take a couple of weeks to get everything shipped here, but after that i should be good to go! Fingers crossed Posts: 381 | From The Netherlands | Registered: Nov 2013
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CD57
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allright! keep us posted.
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Phioph, I cannot seem to send you a pm until you respond to my last pm...not sure why it works that way and I cannot figure out another way. Can you pm me please? Thanksd
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Phoiph
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So, i already got the air concentrator, an intensity 10L model. Was just playing around with it since i have no mhbot chamber yet.
Wat an awful sound it makes! I thought it would be quiet since it is intended for home use, but no way... My ears are oversensitive because of neurological bart, so looking for ways to make it less noisy. Any ideas?
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Phoiph
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S13...
The AirSep makes a "test alarm" sound for about 5 seconds when you start it up, then should just make a repetitive "whooshing" sound, with a low motor hum in the background.
Remember that you will not hear this as clearly when you are inside the chamber, and you can always wear headphones (after you are up to full pressure and have cleared your ears).
You can also move the concentrator farther from the chamber and use a longer hose, but the longer the hose, the harder the unit has to work, and you may lose a little flow/purity.
I had huge sound sensitivity issues as well, and was able to tolerate this (and the sound of the compressor) once I got inside the chamber. Just don't turn it on until you're ready to use it...
Also, a precaution...don't ever turn your concentrator off before the chamber is depressurized completely; the backflow from the chamber can damage it...
I wrote up some basic step-by step instructions/precautions on how to take a "dive", and care for your equipment that I can send you if you like...
Posts: 1914 | From Earth | Registered: Jul 2013
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quote:Originally posted by Phoiph: Also, a precaution...don't ever turn your concentrator off before the chamber is depressurized completely; the backflow from the chamber can damage it...
Ah yes that is good advice indeed! Guess ill see how it goes when the chamber arrives, perhaps the sound isnt as annoying then.
And yes please send me the instructions! That would come in handy for sure.
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Phoiph
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