Hi, I was wondering if anyone has taken any meds. that helped for their circulation. Hugs, Roz

Sorry I have not heard of any thing which will help wiht the vasco constriction except HBOT. Good luck,

Hi Their,

Thanks so much for your reply. I was hoping HBOT would work for me. But it didn't. I ended up with bruises all over me. The Doc insisted I had a blood clot in my lungs, because he said he only saw a reaction like that one time before and that's what they had I guess. But my spiral CT showed otherwise.

I am post OR 9 months from having my subclavicle artery released, and I had surgery on the Brachial Plexus nerves. The best thing I could do is walk, but I get very light headed and dizzy. If anyone has any ideas I would appreciate it.

Hugs, Roz

Hi Again,
I also want to add I have a DX of TOS/RSD. After watching both boards for sometime their seems to be a connection in at least 10% of the TOS DX.

I have also had 2 severe infections this last year. One of them is trying to get rid of cellulitis of my right eye. Which just happens to be also on my eye right RSD arm. I was given 3 antibiotics to take at one time. Their is a serious circulation issue going on with me. Because why else would I have these infections.

A couple Docs have been even concerned with gangrene in my case.

I have had to be on so many antibiotics thru this whole nightmare. The pain is just a SX that something is very, very wrong. Hugs, Roz

Hey Roz

I used to take nifedipine to increase the circulation in my arms and legs. It's ok actually. I came off it because I have bp/ pulse stuff.

might be worth a look?

how's your BP?

Rxxxxxxxxxxxxxx

Hi,
Could I be dealing with cell death, because of the circulation issues? I have had The blood pressure meds. they didn't help me, I tried several. My blood pressure ended up bottoming out. Hugs, Roz

Hi Roz,

As you already know, I'm an advocate for HBO in treating RSD. In fact, I believe it is the only available therapy that offers any hope for ending the ravages of RSD, yet I never talk about it here. I guess it's time I started.

I haven't begun until now because I have focused on showing why is actually an ischemia-reperfusion injury (IRI), a disease that wasn't even discovered until 1964 and thus wasn't in the running when Weir Mitchell attributed this to a nerve injury a century earlier.

I won't try to explain IRI here, limiting myself to pointing out that the IRI process ends with the plugging of millions of microvascular systems (MVS), the arterioles, capillaries and venules that deliver arterial blood to the cells and return used blood to the veins.

Blood can't pass through a plugged MVS: Used blood must empty into veins in order for fresh arterial blood to enter the MVS. Block one end of the tunnel and the other is blocked too.

Because our cells get everything they need in order to function properly from arterial blood delivered by the capillaries, IRI explains every sign and symptom of RSD, from abnormal pain (oxygen deprived sensory nerves); to cyanosis (visible proof of IRI: cyanosis is only seen when blood is not flowing through capillaries); to patchy osteoporosis (bones need calcium, which is delivered by the capillaries); to inhibited hair and nail growth. IRI explains it all.

Plugged MVS' can't be unplugged. They don't make Roto-rooters tiny enough to ream them out. Even if they could, we have millions of plugged MVS and cleaning all of them this way would take years.

HBO doesn't fix plugged MVS', it replaces them. It stimulates production of what is called vascular endothelial growth factor (VEGF), and VEGF is necessary to stimulate production of veins, arteries and MVS. Ever since it was discovered that HBO stimulates VEGF, people have been trying to find a way to make it stop.

Increased stimulation of production of VEGF can be harmful for those who don't need it, but not for those who do. Interestingly, some physicians have been fond of calling HBO 'a cure in search of a disease', so its nice to know we can help it find its way home. HBO is the most effective way known to "grow" new MVS.

So what went wrong when you tried HBO?

Right now, most HBO chamber operators use the "one size fits all" model of treatment. If it works for the "bends"; for severe carbon monoxide poisoning, and sometimes works for RSD, why change? And why change when there is no research showing a different percentage of oxygen at a different pressure might help more RSD patients?

Well, common sense has to fit into the equation somewhere, but there are a lot of areas in medicine where common sense is considered unscientific. Better to wait for proof than try something different just because it seems to make sense. RSD and HBO seem particularly affected by these "values". We get a "double-whammy": neither group of experts has any sense.

Common sense tells us that if we need enough VEGF to stimulate the production of millions (or even more) MVS, it will probably take some time; but the "one size fits all" model of HBO demands as few sessions as possible (usually 30 to 40). If you don't want VEGF in the first place, fewer sessions even makes sense.

VEGF is just the start of the process: our bodies need time to assemble the materials to create these new MVS; they don't come pre-built, so it takes time to build all of them. This means that most of our cells aren't going to see reperfusion (restoration of normal blood flow) for a while, so they will need to be resupplied with oxygen at least if we are to prevent further damage during reconstruction.

Using emergency protocols that "push" as much oxygen into the body in as short a time as possible is the right way to treat the "bends" or carbon monoxide poisoning, where people die quickly if not treated dramatically, but it doesn't appear to make much sense when it comes to rebuilding several million (and sometimes several hundred million) MVS.

I'm only guessing, but my guess is that you got 100% oxygen (O2) at 2.5 atmospheres (ATA). That is generally considered to be safe; especially when less could mean the patient's death.

My guess is based on the fact that another RSD patient went to Canada and received 100% O2 at 1.5 ATA, and improved dramatically, but several months later began to relapse. This time she went to Texas, got 100% at 2.5 ATA and during the "therapy" would call to tell me she was getting worse every day.

I told her to get the Hell out of there. Shoot her way out if necessary; that she didn't really have to shoot anyone, just a couple of light fixtures is enough to scare all but the bravest; but get out now. She didn't. She's now saving money for another trip to Canada.

In Texas, they told her that she must be having a reaction to Lyme's disease. They told you it must be pulmonary embolism. I suggest it was too much O2 at too high an ATA.

One size fits all doesn't fit every RSD patient. In fact, some have gone into HBO, gotten better, then catastrophically relapsed within a few days; some even ending up worse than before.

(I have read many reports of casastrophic relapses, and while there isn't space here to present the reasons, I can report that I know of no one who had begun taking the antioxidant grape seed extract prior to HBO who later reported this.

(In my next post about symptom migration: what causes it and how to prevent it [hint: buy grape seed extract], I will discuss the role of oxygen free radicals (OFRs) in both processes. And lest someone labels me a health food fanatic, I don't have enough money to buy vitamins. I urge everyone to take GSE because it works).

Here is another problem: The research necessary to find an optimal dosage of HBO for RSD/IRI will never be done. There is no way to license HBO, which means no one can have a monopoly on using it and make billions of dollars. If you can't make billions selling it, why spend millions researching it? It aint gonna happen.

What will happen is that those of us who advocate for HBO will finally find the backbone to talk about what we believe - and why - despite the fact that the experts only have to point out that they're experts and we're not. Hell, we aren't even scientists; just people who care enough to spend years researching something no one else is interested in unless they can make a buck from it.

Over time, as more RSD people hear from people who have successfully undergone HBO, more RSD people will try it. Some will get better and some will be like you and my other friend. I figure that in 15 to 20 years, people will have sorted out in their minds the O2 and ATA dosage they feel will best serve them.

Of course during this 15 to 20 years, most RSD people will wait for an answer from the experts; and suffer from the symptoms of this disease all that time.

You see, in RSD the experts have been 100% wrong for 100% of the time. They are still telling us that this is a neurological disorder, despite that fact that at least some of them know about IRI (one even wrote an article about it), and know that this makes more sense.

In the next few days I will publish a post showing why RSD can't be the result of a nerve injury; I expect two or three polite comments while no one pays any attention to what it says. It's going to be an interesting (albeit frustrating) next 15 to 20 years.

What I wrote here offers a hint as to why I haven't finished writing my article for publication: I'm not a scientist and I have no research upon which my conclusions will be based. I expect that if it is published, I'm gonna get beat up pretty bad in the responses. That's ok, they can kill me, but the law says they can't eat me.

I will not be writing to the experts: my target audience are those conciencious HBO chamber operators who want their patient's to leave better than they came in. The ones who will be willing to try less O2 at lower ATA if it makes sense to them.

My only real hope for the immediate future is that some work comp insurance co will learn enough about HBO to investigate it. Right now they are fighting us with everything they have; because they know we aren't going to get better. If just one major company figures out how to treat us (and thus stop having to pay us), the future could change overnight.

Isn't HBO expensive? It is when we have to pay for it. People who work for insurance companies are very good bean counters, though; profits are everything lives mean nothing: so if their computers tell them that one spinal cord stimulator will pay for, say 100 HBO sessions (more than anyone ever gets today); and if their actuarials tell them that people who get HBO get better while people who get the SCS still get worse. we may see the day when they force RSD patients to undergo HBO.

When/if that day comes, I won't be surprised if they go with what works, rather than wait for experts to do research that will never be done...Vic

Hi Roz,

I just wanted to say how sorry I am to hear you're back in the wars; apart from taking the usual anti-oxidants (which I know you take anyway) I don't know what to suggest.... perhaps Vic's reply may encourage you to try HBOT again? How did these infections start, just spontaneously or was there a precipitating cause?

This doesn't really apply to you - but just thought I'd mention it: last year I had 2 powerful courses of 2 kinds of antibiotics, augmentin and something else(?) - to rid me of the helicobacter pylori bacteria causing stomach ulcer. I never take antibiotics unless it's essential, but in that case it was, and it worked. Hadn't taken any antibiotics, apart from topicals, for several years before that. To my surprise, they cleared up a host of minor complaints I hardly realised I had till they were gone, and this winter I've had no sinus/chest infection - usually the hallmark of my winters. I've always been a bit "anti the antis' if you see what I mean, but I think now I just needed a good strong "cleanout".

Many thanks, Vic, that was wonderfully clear, as always. Maybe you should post this in a separate post as well, I don't want to bust into Roz's thread, but I'd like the opportunity to ask you a few things that arose from my reading of your post, but are not really relevant here...

Hope you can find something to knock this on the head, Roz,
all the best

Dear Vicc,

I went to a private clinic. Before I went into the chamber my husband told the operator just go down some feet, I can't recall what the exact words he used to him. But I believe he stated no more than 15 feet.

But for at least the first 15 min. I was doing very well. Able to read even. About 25 min. into the session I felt very shortness of breath. My husband believes they took me to 30 feet. Because it took the operator a bit of time before I could get out of their.

About 24 hours after the session I had bruises everywhere. The Doc who owns the clinic said I had to get a Spiral CT and stated he thought I had a pulmonary embolism. But the CT was neg- for a blood clot. The Doc who owns the clinic gave me a full refund without even asking for one.

I went to my reg. Internal Med Doc. who put the oxygen close pin on my finger, when I was sitting down. My husband told the Doc to walk with me with the oxygen clothes pin. My oxygen levels went way below the norm. In fact the Doc thought it had come off my finger, until he looked down and saw the placement was still their.

So I was reffered to a Pulmonary Doc. who insisted I go thru complete testing. The test showed my oxygen levels down to 77. cont...

Ok here I go again, the Pulmonary MD who I saw told me that if I was dropped to 30 feet it would of been 30x harder for be to breath.

At around this time my husband called another clinic, talked with the owner for at least an hour on the phone. Their conclusion was I did not have enough oxygen.

So I am in 100% percent agreement this is not a one size fits all approach.

Vicc, do you know what kind of license these operators need to have to regulate the chambers? I hope it's not none.

I have stated before I would't mind at all giving it another go. But certainly with someone that knows what the hell they are doing.
Hugs, Roz