New Doctor - New Ideas - Could This Be The Answer, Or At Least A Part Of Our Puzzle?

[HopeSprings]

Rama - are you saying elevated standing NE is a normal response to pooling? And therefore a consequence, not a cause? And that whatever is causing the pooling is the cause?

[issie]

I think that at least the Mayo doc in AZ is thinking there is more patients with MCAS even if they don't get scientific proof of it ---because he is treating a whole bunch of us with GastroCrom and Allegra and either Pepcid or Zantac. It seems that with us whom he is saying is HyperPOTS with symptoms of MCAS and a good many of us with EDS ---this is the direction of treatment that he is going in. All I know, is it has made a big difference for me. Whether or not doctors agree or agree to disagree ---or whether or not the scientific proof is there or not ----if it helps -----it HELPS. So, intend to stay with it.

As for the idea and "out of the box" thinking of this doctor on the protozoa. It will probably be awhile before he has enough people with POTS to do any scientific studies to prove one way or another whether or not this is or is not viable. I'm just presenting information here. (And I know it is controversial.) But, with me testing positive for protozoa by two separate labs. I'm thinking it won't hurt anything to try this. If it is found to help with CCVSI and blood flow to the head and peripheral limbs ----WONDERFUL! Only time will tell the results. Since the treatment with low dose antibiotics and/or antimalarial drugs could also help with inflammation and for sure could tame down the infection ---not seeing that a trial of this will hurt. Of course, the die off isn't at all fun. Also, as Anglea has pointed out with some people with autoimmune issues (which I have a barrel full of) this diet has been proven in other well known illness to be of benefit. So, it is something that I can do. And if done properly (making sure I get enough plant protein) will not hurt me. So, will be trying this out.

Rama, thanks for the explanation on EDS and the connections with NE. (I thought others might want to know where you were coming from with your comments. They were on the vague side.) I understand that possibly the NE over release is because of the faulty veins and our NE has to be higher with standing or we will have worse pooling. I did find when I suppressed my bp with any of the drugs that I tried ---I had worse blood pooling issues. Much more issues with edema.

I think there is still a lot of study that could take place in accurately determining sub-types. I don't think this is being done to the full extent and what on the surface may appear to be the case ---may not be. As for issues with NET and the NE being carried out of the body and away from the nerve signals correctly ----if we need the extra NE to help with issues with blood flow and vasoconstriction ---due to EDS ---it would seem that removing too much NE would make things worse.

I'm pretty open minded as to many of the "theories" out there. If people are getting benefit from them ----more POWER to them.

But, we have to keep in mind, when we are talking about POTS ----we are still so new in discovery and there is not enough research being done. There may be things that may help some and other things that won't. But, hopefully, one day, we will have a cause known. There are a whole lot of "theories" and "speculations". But, really nothing is a positive when you are talking about POTS. There is a whole lot of trial and error ----and more error then anything.

I appreciate the fact that some doctors will go out on a limb and suggest what they think in regards to POTS. It may or may not be right ---but, at least we have people thinking on our behalf. Time will tell about this one.

Issie

[ramakentesh]

Rama - are you saying elevated standing NE is a normal response to pooling? And therefore a consequence, not a cause? And that whatever is causing the pooling is the cause?

yes that is exactly what I am suggesting in EDS.

[ramakentesh]

Issie - my point is that some theories have more research basis and re-testable results than others. As an example can you provide me with any research-based evidence that demonstrates CCSVI in any POTS patients?

[diamondcut]

I would like to chip in here and say from an EDS and POTS sufferer, I did not have drastically high NE levels yet having a very fast resting heart rate and other symptoms would suggest hyper pots.

I could agree in that high NE levels could be another compensatory mechanism, perhaps this is why beta blockers and in my case clonidine caused such fatigue, obviously blocking the over response of NE when we do stand up. Drs were surprised I felt so tired and worse on clonidine when I complained of tremors and signs of over active response to normal daily stimuli.

If you look into Dr Driscolls research at present, she is looking at co-morbid conditions like MS in EDS, where of course CCSVI has been a topic of conversation for MS patients since Paul Zamboni's Angioplasty began as well as Dr Michael Flanagan, who has been looking at these types of problems with the neck and spine for over 25 years. Driscoll has proven that many people with MS develop EDS or vice versa, of course POTS comes into play in this melting pot (excuse the pun)!

The theory is that poor venous drainage and CFS from the brain Is a result of CCSVI in EDS POTS people, causes a cascade of problems, ultimately leading to too much pressure on the vagus nerve causing dysautonomia. I know Driscoll herself who has EDS and POTs as does her son, both had CCSVI, many others are now being scanned for it including myself and the numbers are flooding in according to her. She is at present conducting more research into this phenomena and I personally have a feeling that many may find their route cause of the pots by doing this. It's just another avenue and one that makes sense as we all know oxygen perfusion and drainage plays a major part in our problems, particularly with weak blood vessels and veins due to the connective tissue. You just have to see how many of us have headaches to know they are looking in the right area, and with the vagus nerve controlling so many of out autonomic functions I believe there is truth in her claims and yes she does have evidence of POTS people having CCSVI, it's just not common knowledge in our community unless you have read Dr Driscollls research papers. She also has evidence of LOTS of POTS with EDS people suffering from MCAD, it's all part of the inflammation and deterioration of individuals who suffer for years with POTS.

I felt I had to mention Dr Driscoll again on here because I have suffered for about a year with chronic "vertigo migraine" and been in agony daily, since reading that I am actually suffering from ex communicating hypothalamus , which has been proven by starting diamox, I have had the best almost pain free week in an entire year, so I am grateful to her research extremely. So I wanted to give her a plug.......sorry........

[ramakentesh]

EDS patients also have beta 1 receptor supersensitivity meaning they can have tachycardia with even normal levels of NE.

I can start by saying that having read some of Dr Driscoll's theories (and I should note that she is a patient rather than a researcher or specialist in autonomics or neurocardiovascular research) I did not find compelling evidence to support her contentions.

Its in part based on the assumption that most EDS patients have comorbid MCAS issues. This may be true but there certainly isnt concensus that this is correct. The prevailing thought among the actual autonomic centres and specialists in POTS is that MCAD is a legitimate and distinct form of POTS and that patients with MCAD traditionally have their own presentation and that it is rare in POTS patients. Some respected researchers in POTS have not found one patient with a MCAD type disorder in 1,000s of patients and these being autonomic specialists. So my point was just to demonstrate that Dr Driscoll and Dr Afrin's theories are equivocal to put it liberally. Dr Afrin is rather than suggesting MCAD is a legitimate cause or phenotype in POTS, he is suggesting that most POTS (or perhaps just EDS POTS?) patients have it comorbidly. Quite possible but then this would mean that MCAD is a comorbidity rather than an actual etiology for POTS.

Secondly the notion that CCSVI is the cardinal issue in POTS and CFS is speculative. Nearly all considered research on MS suggests it is an autommune/cytokine-driven disorder rather than a disorder of impaired venous blood supply to the brain. As an example MS often has a relapsing remitting course common in many autoimmune disorders and this cannot be explained via CCSVI. In rheumatological circles the CCSVI theory for MS is considered equivocal, and many actually think its profoundly dangerous. Still some patients claim that surgical procedures to fix the CCSVI has been helpful for their MS. Serum of MS pateints has demonstrated numerous cytokine-driven immuno abnormalities. MS patients often experience relapse on TNF alpha inhibitors, suggesting that the cytokine system is abnormally activated in these patients.

Even then, its a step further to say that CCSVI is the cardinal problem in POTS and CFS. This is because in many cerebral autoregulation is impaired rather than just cerebral blood flow. Venous compliance defects in the CNS would in theory cause continual reductions in cerebral blood perfusion, impaired local blood flow such as in stroke and most strikingly of all would be detectable via supine carotid artery blood flow measurements (which in POTS at least are essentially normal).

What autonomic specialists are telling us is that POTS blood flow supine is usually normal, the system that stops blood to the brain from going up and down with heart beat and blood pressure variability (cerebral autoregulation) is abnormal under orthostatic stress, that there are defects in sympathetic control of autonomic function and regulation of blood volume that may account for this. The only theory that has been subjected to any testable rigour is the possibility that some have parasympathetic denervation of the pial vessels at the blood brain barrier (CNS). this may effect control of cerebral vasodilation and is another theory being considered in relation to CFS and POTS.

My point is that on the one hand you have Dr Driscoll et al's theories and on the other hand you have a body of research from autonomic and neurocirculatory specialists and doctors who deal with hundreds and thousands of patients with these conditions that suggest otherwise. That doesnt necessarily suggest that Dr Driscoll's theories have no validity or are incorrect but it does mean that people need to be aware that the current consensus among researchers in this field does not really support those theories.

And I think its also important to just look at the theories in terms of basic physiology - does current understandings of hemodynamics in POTS and OI allow for CCSVI? What evidence base is there for CCSVI in POTS?

I have heard of at least three patients using diamox and also two getting CCSVI surgical therapy. None noticed any benefit.

Im not trying to change your point of view. Im just pointing out for objective readers what the theories say versus what the research says. and I hope (this time) ive done it in a non-inflammatory way so that my post does not once again require moderator intervention.

[ramakentesh]

Someone recently sent me a pm about MCAD arguing that 'Vanderbilt and Mayo' are coming around to the 'theory'.

Vanderbilt were the researchers that first identified MCAD in half of their hyperadrenergic patients (that is patients with elevated sympathetic activity as assessed by MSNA). This equated to roughly 5-6% of their overall POTS patients according to the information on their webpage. They identified it as a disctinct form of pots where orthostatic hypertension and episodes of hypotension occured.

Mayo still tend to argue (at least in the research arm at Rochester) that most POTS is autoimmune.

[Katybug]

I think we all need to keep in mind that little progress would be made in science and medicine if brilliant people with brilliant ideas backed down when they couldn't immediately prove what the annecdotal information showed to be true. And it would be a shame if these brilliant ideas fell by the wayside due to fear of being on the fringe. There will be ideas that turn out to be wrong thinking...in fact maybe more wrong than right...but that's how we make progress. Several people told me taking the long term antibiotics for Lyme was dangerous and bad. But guess what? I could work and have a semi-normal life then. Now I can't predict what my body will be doing in half an hour. The treatment was experimental but I'd try it again in a heartbeat if I could find another doc that's up for it.

[ramakentesh]

Here however progress is being made but just in different directions.

[Relax86]

I myself recently had positive autoimmune bloodwork. Plan to see the immunu people Friday. Despite being 85% better I would like to know a little more about my cause. I don't know what type but I got better anyway. My POTs flares are usually every 3 years, seemingly 1st to 2nd week in January. It's my holiday crash?? The crash of 2012 being my worst by a long shot. I believe b/c I succumbed to a 4 day hospitalization which was full of bloodwork, mistakes in my bloodwork and lost bloodwork requiring too too many blood draws. I think it took months to rebuild my blood supply and the rest of my ANS is still trying to re-group. I did get smarter this time thanks to the forum. I'll look for continued updates from Issie's dietary changes.

[ramakentesh]

Most researchers think that the most common form of pots is neuropathic with an autommune or cytokine driven neuropathy.

There is speculation that the epigenetic gene silencing found in some pots patients might also be a cytokine driven process.

But its even possible that small fibre neuropathy might be a consequence rather than cause of ppts through altered small vessel blood flow. Time will tell.

[issie]

As for autoimmune issues being at play here, the doctor I'm seeing with the protozoa idea definitely believes this is one of the issues. He even offered me meds that would work on this. I decided to wait and go one step at a time and work on my issues with antimalarial herbs and diet to start with. Whether or not this milder approach will work --we will see. I think he isn't trying to say that all the issues are with CCVSI - but, with the veins as a whole. This protozoa lives in the veins. Therefore, if they adhere to the walls of veins in the neck and head then they would all over the body. That MIGHT cause issues with blood flow through the whole body. Whether or not this could cause an autoimmune response ---I haven't researched that aspect of it. But, since they can hide themselves from the immune system and survive ---thinking there is at least some dysfunction with the immune system since they can not recognize them. For definite sure they can cause inflammation and issues with cytokines. I've had vein issues for as long as I can remember. I had leg vein surgery when I was only 26 years old. The idea with CCVSI and there being a ballooning out of the veins that compress the vagus nerve and that could possibly cause issues ----is a possibility. This is a new idea and is not yet completely recognized by even insurance at this point. The Driscol theory has to do not only with this - but, an issue with spinal fluid flow and possibly the fluid not draining properly and pushing down the brain from the top and pressing on the brain stem causing some CNS and ANS symptoms. I know when I tried the Diamox --it helped with my head and eye pressure. I also had more fluid draining. In the long run, I couldn't take the med - because of issues with sulfa. But, it did help my headaches and pressure.

As for MCAS. GastroCrom can help autoimmune issues and inflammation too. It helps to suppress mast cell activation and calms down the function of them in the intestines. There is so much that happens in the intestines and it is thought that some part of immunity is in the gut area. If you suppress mast cells that will also suppress release of many chemicals ---some of which are inflammatory. I truely believe since I've been on this, things have improved for me. I don't have the wild tachy or terribly high bp's any more. This is one thing that has helped me. That along with Allegra and Zantac. It has a calming affect on my SNS.

This doc. is speculating that small vessel blood flow issues could be from this protozoa and/or co-infections from bacteria.

It won't hurt me and the others who plan to test his theory out with a diet change and a few herbs or a trial with meds. Goodness knows, I've tried nearly everything else. This is just one more experiment. Hoping that it turns out well and the results will be something to write about.

Issie

[ramakentesh]

Autoimmunity is one thing. Protozoa, CCSVI and the other stuff is another.

[ramakentesh]

Follwoing on from a comment I'd like to reiterate that I in no way mean to offend anyone by the way. I have no doubt that all the people involved in this stuff have good intentions. But the last four or five years have had some significant developments in POTS and OI research that rarely get mentioned on these pages. Ive never said that any of these theories are BS. Just weighing them up against other findings.

As for autoimmunity - there is some interesting stuff on histocompatibility and molecular mimicry that might be of interest as a possible alternative.

[issie]

Rama, Got a link on that?

Issie

[HopeSprings]

But its even possible that small fibre neuropathy might be a consequence rather than cause of ppts through altered small vessel blood flow. Time will tell.

What? I thought the majority of us had neuropathic POTS - meaning this is the cause. Did a POTS Doctor say it might only be a consequence or is this your own opinion? Of course it seems a majority of the time they can't figure what caused the neuropathy, so I guess it could be the other way around... unless they start finding new antibodies or something else that can explain it.

[foggy_brain]

I have some concerns about this topic I would like to respectfully share:

• I can't find a scientific publication that mentions Protomyxzoa rheumatica,
  
• the consensus among most doctors is that Chronic Lyme infection does not persist after antibiotics course, from what I understand
  
• CCSVI is an unproven condition that has already led to deaths by surgery, from what I have read.
  
• I did find a discussion of this doctor's claims discussed in the blog post "Real Quacks, Imaginary Bugs", see relative-risk blogspot.
  

Here are some risks that concern me:

• CCSVI surgeries may lead to deaths, stroke and paralysis see FDA warnings in a Reuter's bulletin.
  
• Taking antibiotics long term may have cardiac consequences, cause fungal infections, etc.
  

[Angela]

In my opinion this doctor believes that following the diet - same diet Bill Clinton and Clint Eastwood if I recall are on- will shrink FL1953 and help with blood flow issues. So, I don't believe for most following a healthy diet can kill you. Of course, always check with your doctor first.

[HopeSprings]

Foggy - I totally agree there are many quacks preying on those of us with unclear diagnoses. Not saying the above mentioned Doctors are those, but we do have to be careful.

[issie]

There are many autoimmune type illnesses that follow this diet ---MS, Cancer, Diabetes, Heart Disease and I'm sure there are others. The main thing with this protocol is the diet. That alone is thought to be the key to the control of this protozoa. Not only is there a blood test done to LOOK at these protozoa - but, then a DNA of them is done to determine if these are that strain of protozoa. The pictures don't lie and neither does science. The other test I had done at Quest Labs and that was a positive from them. So, having had back-up of co-infections from a tick bite and organisms in my blood ---there is no denying that this is there. Now, whether or not it is causing issues ---I can't answer that. Does everyone have them? I can't answer that.

Dr. Fry seems to be a very compassionate, hard working, driven man. He has devoted 20 years to this discovery and trying to find out how this organism works and what tames it. I did not find that he was trying to make money off of me. He does not suggest something that cost a lot to do. The meds, if you go that route, you obtain from your pharmacy. I pay my co-pay and walk out of there. I think that we are very fortunate to have men and women who will think out of the box on our behalf. They may or may not be right. But, at least they are thinking and TRYING to help us.

I happen to know that Dr. Fry, very recently, was invited to speak at Mayo Clinic here in AZ. He was received and listened to by cardiologist mainly. He travels and speaks at many engagements. He is not the only doctor looking into this particular organism. But, is the one that first discovered it.

As for CCVSI ---this is new in the medical field. With anything new - there is a lot of criticism and a lot of mistakes made. I really don't know enough about it to form an opinion. But, I do know that there are doctors in different fields looking into this. I saw a video of a doc giving a lecture who had success with surgery and the people could tell an immediate difference in their blood flow to their heads and their vision actually improved. But, this same doctor said that he had someone die from the procedure. So, this isn't something to take lightly. I think with time more will be discovered in regards to this. Most doctors that start into a new line of thought in the medical community ---get attacked and judged as a "quack". I applaud those for continuing medical knowledge. If people had stopped thinking, discovering, experimenting etc. We would still not know what POTS was --we would be taking anti-anxiety drugs and be told that it was all in our heads and it was just our nerves. Well, thankfully, some doctors looked past that DX and now we know more of what we are dealing with.

I applaud these pioneer type doctors. I'm encouraged by their bravery to stand up knowing there will be criticism of what they think. I may or may not agree with them on everything that they say. But, thankfully, we have doctors who are looking into things for us with POTS and trying to find some solutions.

If all it takes is a diet change and a few herbs for me to feel better. Then so be it. The one thing that I've done throughout my life that has changed very little ---is diet. Something I was doing ---was not working. What can I change that may make a difference ---Diet. If we look at a chronic illness and see that genetics play a role in it (our parents, sisters, kids) have the same issues. What is there that has been learned and passed down ---Diet. Could it be that we have caused some sort of epigenetic change, because of diet that has us in the place that we are in? I don't know that answer. But, it won't hurt me to change my diet and see if it makes a difference.

I don't know if this will turn out to be the answer. But, what I do know, is it can't hurt anything to try for awhile to see what happens.

The whole point of this thread is to pass on information. There are doctors out there trying to find help for us and that gives me encouragement. Is it a little nontraditional ---yes. But, might it work ----well yes. So, we will see what time brings.

[issie]

While it is true that taking antibiotics could cause yeast over-growth problems and one would need to be on a good probiotic to prevent this. There are a lot of autoimmune illness that are now being treated by low dose antibiotics. I found this article tonight and thought you may enjoy reading it. Doxycycline is the antibiotic used for this protozoa too. (This article is about low dose antibiotics and Lupus.)

http://www.roadback....lay_id/187.html

Issie

[LMG]

I know several CFS/Fibro patients who have been on long term antibiotics and found some relief. Some have followed protocols for chronic Lyme, others for mycoplasma or chlamydia Pneumonia (after Garth Nicholson published protocols and info on Gulf War syndrome). Some followed the Marshall protocol, which is a bit more controversial as it requires avoidance of sun and all vitamin D including foods in which D is high.

While no one I know is cured,they would not even consider going off the abx (usually minocycine,doxy, or zithromax), so it may well be that a pathogen is behind some of our symptoms, some cases.

Yes, there are risks, and I am not advocating for or against, but I agree that it is worth looking into.

[Crow]

If you have EDS, please be careful in limiting magnesium. EDS folks have trouble with magnesium absorption as it is (which is why Dr Francomano recommends epsom salt soaks).

[diamondcut]

EDS patients also have beta 1 receptor supersensitivity meaning they can have tachycardia with even normal levels of NE.

I can start by saying that having read some of Dr Driscoll's theories (and I should note that she is a patient rather than a researcher or specialist in autonomics or neurocardiovascular research) I did not find compelling evidence to support her contentions.

Its in part based on the assumption that most EDS patients have comorbid MCAS issues. This may be true but there certainly isnt concensus that this is correct. The prevailing thought among the actual autonomic centres and specialists in POTS is that MCAD is a legitimate and distinct form of POTS and that patients with MCAD traditionally have their own presentation and that it is rare in POTS patients. Some respected researchers in POTS have not found one patient with a MCAD type disorder in 1,000s of patients and these being autonomic specialists. So my point was just to demonstrate that Dr Driscoll and Dr Afrin's theories are equivocal to put it liberally. Dr Afrin is rather than suggesting MCAD is a legitimate cause or phenotype in POTS, he is suggesting that most POTS (or perhaps just EDS POTS?) patients have it comorbidly. Quite possible but then this would mean that MCAD is a comorbidity rather than an actual etiology for POTS.

Secondly the notion that CCSVI is the cardinal issue in POTS and CFS is speculative. Nearly all considered research on MS suggests it is an autommune/cytokine-driven disorder rather than a disorder of impaired venous blood supply to the brain. As an example MS often has a relapsing remitting course common in many autoimmune disorders and this cannot be explained via CCSVI. In rheumatological circles the CCSVI theory for MS is considered equivocal, and many actually think its profoundly dangerous. Still some patients claim that surgical procedures to fix the CCSVI has been helpful for their MS. Serum of MS pateints has demonstrated numerous cytokine-driven immuno abnormalities. MS patients often experience relapse on TNF alpha inhibitors, suggesting that the cytokine system is abnormally activated in these patients.

Even then, its a step further to say that CCSVI is the cardinal problem in POTS and CFS. This is because in many cerebral autoregulation is impaired rather than just cerebral blood flow. Venous compliance defects in the CNS would in theory cause continual reductions in cerebral blood perfusion, impaired local blood flow such as in stroke and most strikingly of all would be detectable via supine carotid artery blood flow measurements (which in POTS at least are essentially normal).

What autonomic specialists are telling us is that POTS blood flow supine is usually normal, the system that stops blood to the brain from going up and down with heart beat and blood pressure variability (cerebral autoregulation) is abnormal under orthostatic stress, that there are defects in sympathetic control of autonomic function and regulation of blood volume that may account for this. The only theory that has been subjected to any testable rigour is the possibility that some have parasympathetic denervation of the pial vessels at the blood brain barrier (CNS). this may effect control of cerebral vasodilation and is another theory being considered in relation to CFS and POTS.

My point is that on the one hand you have Dr Driscoll et al's theories and on the other hand you have a body of research from autonomic and neurocirculatory specialists and doctors who deal with hundreds and thousands of patients with these conditions that suggest otherwise. That doesnt necessarily suggest that Dr Driscoll's theories have no validity or are incorrect but it does mean that people need to be aware that the current consensus among researchers in this field does not really support those theories.

And I think its also important to just look at the theories in terms of basic physiology - does current understandings of hemodynamics in POTS and OI allow for CCSVI? What evidence base is there for CCSVI in POTS?

I have heard of at least three patients using diamox and also two getting CCSVI surgical therapy. None noticed any benefit.

Im not trying to change your point of view. Im just pointing out for objective readers what the theories say versus what the research says. and I hope (this time) ive done it in a non-inflammatory way so that my post does not once again require moderator intervention.

Hi Rama

I don't disagree with a lot of your comments on the fores and against's with issues such as MCAD the being the route cause of POTs rather then a cormorbid condition, how relevant is CCSVI in POTs with the evidence that is out there at present too, but i suppose the point i was making is sort of like Issie atleast Driscoll and her team of Dr's are looking into this, and there are not just one or two people getting mild relief from all of her advice to do with mast cell, cfs drainage, inflamatory cytokines and even early infant stages of research into nerve decompression surgery. If things are stagnant who knows how long many of us will be struggling for. You need brave people to volunteer for these medications and risks surgeries else how do we ever perfect it? Heart surgery was far more risky when it first came about, but becuase they have the numbers to refine the skilss and more money looking into wys to perfect techniques even more, other conditions have a big advantage over us lot on here. No matter what new surgery comes around or surgery in general there will always be cases where poepl do sadly suffer complications, as awful as it is does this mean we just drop it? In my opinion no, obviously if every CCSVI surgery was resulting in death then its a big no no, but i am just basing my opinion on Forums where a lot of MS patients have found improvemnts, placebo effect, maybe??? But is that insulting to them?? I am sure they would think so. I just salute anyoe who dares to go against the majority of advice, even down to taking anti biotics daily for Lupus when others opinion are its not good. It takes bravery to try anything with unknown risk.

But if you are at a point in your life you feel you dont have much to loose by trying i can understand that. I can also see how the vulnerable may be sucked into a theory that is a money making scheme, but i dont believe any of what we are talking about on here is that ype of thing.

I saw my cardio yesterday who felt that carotid arteries may well cause blood follow issues, but no way did i have that and his words, he would "eat his hat" is there was evidence of CCSVI as he did not believe veins were designed in such a way that they could, clog, bend or kink. Fair enough, but if Drs are not prepared to even look, even to humor the patient how do we ever take that step forward to be able to answer your question like "what evidence is there of ccsvi in POTS?" I think the same goes with the protozoa, as far fetched as some may believe it is the "real MD's" as some would call them laugh every new suggestion off, we are then relying on a very select few fighting to get us better, and surely its better to have more options out there to us?

One thing i do strongly disagree with you on though and i think it is a slight injustice to call Dr Driscoll just a "patient" and not a researcher. She is Optometrist which is were a lot of her findings with abnormal blood vessels in the back of the eye started the ball rolling with how EDS/POTS and the blood flow issues really began. I think with the amount of evidence she has collected, whether its right or wrong along side the people she has helped, books that have been published, research that has been published and medical conventions she has spoken at, to say she is just a patient is not fair. She does have Dr's on board with her findings. so does it matter if she herself doenst have a medical degree from Harvard or Yale. She is by no means an idiot and i think adds that personal caring touch that so many Drs lack and thats what is enough to just give people hope at times. IAnyone who losses their lie to pots and is bedridden for years( as to were her small kids, and Drs couldnt help at the time, i think there is not greater incentive to look for a cure than seeing your children missing schooling and missing out on their childhood.

For example, i would say out of all of us on here, you would be the biggest rearcher going, you seem to retain facts and figures and have a wealth of knowledge of so many things, that quite honestly confuses the **** out of most of us, but as far as i am aware you do not have letters after your name? But yet you yourself can make a very valid input and i bet you diagnose and categories a lot of us on here better than our so called pots experts!!

The trouble with these experts is that that yes of course they play such a vital role in moving things forward BUT pots does not effect their life 24/7, they see patients upset for an hour in front of them for A consultation, or they see the next person coming in to clinic in a wheel chair, but they do not have the faintest idea what this is like to live with day in day out, its seems strange how the more radical ideas of say Paul Zamboni in regards to CCSVI was discovered as a result of his wife having MS, Driscolls entire family suffered with POTS and EDS, so maybe the pattern here is that real people who's personal daily battle leads to more bravery and to take bigger risks and be prepared to take criticism for surgical procedures that are not 100% certain, but as its such a personal battle maybe they prioritize differently to those who research at the Mayo and the like.

What i find quite sad is that recently a post was made on here how i think it was the Mayo, they have found anti bodies in pots people that directly attack the heart, i think it was Jangle who posted this, then quite a few tried to follow this finding up and ask "so what happens next?" the response was that these scientists do not see patients and that there was no further plans to investigate this any further!!! Is it any wonder why many of us then try more unconventional methods? I asked my cardio when do you think cytokine biomarkers will be here in the UK to test people, and he had no idea when that could be......

You did make me think about one thing with the Driscoll theory #well lots actually# but one that i wonder if anyone on here knows the answer too.

Driscoll states how important it is to take sodium bicarb daily with diamox to keep the Alkalinity in the body, else the Diamox fails to drain the CFS fluid correctly, ok but why then with High intracranial pressure headaches, is Diamox given to again help the drainage of the cfs fluid and there is no mention or necissty to do this?? My cardio did say worrying to me yesterday that no matter how much magnesium you supplement, taking Sodium Bicarb at that amount daily would ruin your kidneys....... Does anyone understand that????

I guess my whole point to this thread is no matter what alternative ideas we post on here, there are always going to be fores and against, and i think its down to how that individual feels about the quality of their own lives if they want to take these risks to try alternative drugs, surgery or lifestyles and diet..... What does annoy me is if a Dr would not even give you that right because its not printed in the British medical Journal, but i guess thats how the medical world works.

Oh yes Rama there was one question in regards to the beta 1 receptor super sensitivity in EDS patients, what could possibly be if there are any, possible treatments to discuss with your Dr to help that issue?? I know you are going to baffle me with science now.....

[issie]

Well written Diamond.

As for the baking soda ---there can be some very bad consequences to taking so much. And that aspect of it was disturbing to me. The reason for this is the Diamox causes your body to become very acidic. When that happens it will open you up to possible things like ----cancer - for one. The soda will lower the ph and make it more alkaline. That is why the baking soda is recommended. But, since I couldn't take the Diamox (allergies to sulfa) and also realized how imbalanced it made my ph. I stopped it. Whether there is another way to make your body more alkaline ---I haven't researched. But, when I was too acidic ---I felt horrible. In fact, I think I felt worse then what I was trying to treat made me feel. I had a nurse tell me one time that sodium bicarbonate is used sometimes in heart situations to treat sudden cardiac arrest --but, only when it is an extreme emergency and only with extreme caution because of the possible death consequences involved in the treatment. I can't remember exactly what all she said about it. ( It can be used at a much lower dose for heartburn.) I know that with certain foods you can raise and lower your ph. So, maybe concentrating on foods to raise alkalinity may be a very good thing to do.

Issie