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Naomi, Dr. Klimas went on record in Newsweek magazine saying that if she had to choose between having HIV or CFS, she would choose to have HIV because her HIV patients are hale and hearty, and went to talk about CFS patients and the poor quality of life they have.

My spect scan was done many many years ago and showed profound CFS indications. I don't have the notes to be more specific.

A cardiologist is recommending I try Mestinon for hyper pots.

Wondering what your experience is with this drug. Did it help, did you have side effects? Were you able to stay on it?

Thank you in advance for any information!

Naomi, it's so complex it boggles the mind, yet sometimes it seems as simple as 'the knee bone is connected to the thigh bone' song. In the end it's just plain complicated. I had a Spect Scan too. Did you get good information from yours?

Yes, HIV is a good example of neuro-immune. Perhaps the best example.

Ironically, people with HIV are able to do very well with good health care! I know a man who has been HIV positive since 1981, and he's doing great! Working full time, traveling, living the dream. Amazing. If those of us with CFS and dysautonomia were dying, and IF our illnesses were sexually transmitted you can bet countries all over the world would find a cure.

Naomi,

You asked about neuro-immune, and what it means.

MS is a classic 'neuro' or neurologic disease. MS patients neurological systems are severely compromised. They may have a few anomalies in their immune systems, but not enough to call MS a neuro-immune disorder. MS along with many other illnesses is a classic neurological disease.

In the mid 1980's when CFS emerged, it emerged in 'clusters' around the country. Most doctors felt it was probably caused by an unknown viral agent because of the 'clusters' that broke out in various areas in the U.S. Viruses are communicable, so clusters of patients in one small town made doctors think 'viral'. Doctors are still focused on 'viral' as a cause, but some doctors are focusing on other pathogens as either a cause or a co-factor in trying to determine the 'cause' or etiology of CFS.

During those early years in CFS doctors that were dedicated to treating and researching CFS did testing and found profound immune damage in CFS patients. T cells, B cells, NK cells, and cytokines all pointed to CFS being an immune disorder.

Over the years theses same doctors, (along with many more doctors and researchers) began documenting profound neurologic disturbances as well as immune issues in CFS patients. (I'm not referring to autonomic neurologic issues, but overall neurologic issues) Cognitive problems, gait, balance, the list is very long...Brain scans have shown neurologic damage in CFS that I can't begin to speak to.

Thus the term 'neuro-immune' to describe CFS patients who have both neurologic abnormalities and immune abnormalities. GWS also have 'neuro-immune' problems. (I'm still not narrowing this to the autonomic nervous system, or referring to autonomic neurologic issues.) Neuro-immune means the neurologic system as a whole as well as the immune system as a whole.

Some CFS patients have developed autonomic problems, primarily OI and POTS but the majority of CFS patients do NOT have dysautonomia.)

So neuro-immune does not refer to the autonomic system.

So GWS patients do have a neuro-immune disease that falls into catagory I just explained, but it appears from the posts listed in this link they also have profound autonomic issues!

A fascinating piece of information!

Am just pointing out that dysautonomia is not something that most CFS patients have. Plenty of CFS patients do have POTS and OI, and it's been proven that they're is a STRONG viral link with pots. The new Mayo paper says about 50% of people with pots have a viral onset. Lots of people without CFS have a viral onset that causes pots too.

Thanks for posting the Gulf War Syndrome info.

And to add to this conversation, Dr Afrin has recently been awarded a grant to study gulf war syndrome and conncetion to mast cells.

Now this is getting interesting!

Lyn

Indeed.

Extremely significant article!

The immunologist I see is one of the worlds leading researchers on both CFS and Gulf war illness.

She does extensive immune testing (20 plus pages of data that looks like Greek to me), and people debilitated by CFS and those sick with Gulf War Syndrome have very similar immune findings and devastation. The problem is not only 'immune' but is now classified as 'neuro-immune'.

The current working hypothesis is that Gulf War Syndrome patients immune systems were devastated by chemicals, and CFS patients were devastated by viral agents. But the details of our immune systems are very similar. (T cells, B cells, NK cells and cytokines)

Much of this immunologists research and grant work is funded by the NIH and other government agencies. Godspeed!

Gulf War Syndrome patients have been dismissed and disrespected by the medical community as severely as CFS patients. Some people have suggested for years that if the gov't acknowledges these as real and debilitating illnesses it will break the back of Social Security. No doubt.

The new Mayo paper lists that about 50% of patients with pots had a 'viral onset'. The immunologist I see is the one who dx me with pots, because OI and POTS is not uncommon in CFS patients, (because of our high viral 'load')

It's uncommon for people with CFS to get diagnosed with pots though.

So you will definitely see patients with CFS and Gulf War Syndrome taking the same drugs, and immune modulators.

Good find Naomi!

Okay, the link isn't working.

Please go to Rachel's original post and link. Open it, and directly below the name of the article, you'll see the word 'abstract' highlighted in yellow. Directly to the right and next to abstract is a tab that says 'full text'.

Click on 'full text' and read the whole article.

Great find Rachel.

Rachel, Fantastik find, so much data here! Thanks for sharing.

For those of us with cognitive issues, (me!), here's the link to the full paper.

http://www.mayoclinicproceedings.org/article/S0025-6196(12)01038-5/fulltext

I was just wondering if there was any relation to the weight gain or lose and the type of POTS that a person has. For example do people with hyper POTS lose more than others etc?

Ginger, I don't know that anyone has addressed hyper-pots and weight loss directly.

With a NE of over 1400...Hyper-hyper pots, I think you've made a good point, even if you don't know you've made it, Smile.

I can't seem to eat enough, or even to want to eat enough. Nausea, and just feeling too tired to eat play a part, but there has to be another element. I think that other element is hyper pots, or in my case a very high NE, over 1400.

My husband and I eat out most nights, (no shopping, no preparing, no clean up) all which require energy...So this is about energy and economics. I have no energy, but we have the economics, which I'm grateful for.

Many times I opt for good steaks and pasta. I'm so hungry when I finally eat a real meal, people serving and working in the restaurant comment. (They should not, but they think it's a compliment.)

I order a steak, a salad and a side of pasta with a vegetable. And eat it all. And then eat almost nothing for days, because it's sickening to even think of eating.

I know it is awful for so many to worry about calories and the scale...I remind people that eating should be a pleasure, and excluding excess, enjoy! Sincerely. It's so rarely that I have an appetite and even want to think about eating and when I do it's more about nutrition and finally eating.

So if you enjoy eating I hope you will continue to get pleasure from it. If you struggle with a few extra pounds you are with the vast majority of well people.

I guess I'm just saying you can't enjoy the joy of eating until it's gone.

For me the joy is rare, very rare, and it's because of hyper pots.

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The website for the brain games is : www.lumosity.com

Thanks for the link Katybug!

I've been on Ritalin (to keep me from falling asleep during the day) and remember that it helped with brain fog too. At some point I came off of it though I can't remember why. Might be time to start it again

Corina, I tried Provigil the week it came out, (long time ago.) At the time it was used as off label thinking it might help other issues, just as ADD drugs are still used today. It made me feel like I had one foot floored on the brake pedal and one foot floored on the gas pedal. So it made brain speed up and body even more exhausted. Am glad it's helping you. Wish it was helpful to me. Made me more! exhausted

I was told by a doctor that most pots patients have 'normal' hearts (with the exception of atrophy), but that pots is 'a neurally mediated heart condition.' Many people have gone to a cardiologist with pots and gone through testing and been told 'your heart is fine.'

Am lucky to have found a doctor well versed in dysautonomia.

But if a doctor blew me off with pots, I'd ask him, "Are you knowledgable about neurally mediated heart conditions?" He would have to say, 'no.' I'd give him literature on dysautonomia and ask if it's something he's willing to learn about it!

Am in no way discounting those that have some abnormal heart issues, but the majority of pots have normal hearts. Not including size due to atrophy.

Am just frustrated for all the people whose doctors are ignorant about dysautonomia and unwilling to learn.

Wow Joyagh, that's a fantastik article. Thanks for sharing.

I've taking 3mg of a timed released formula. After reading that article, I think I'll stop.

Caught a brief segment on Dr. Oz and he had a melatonin expert on who said not to take more than 3 mg. I wasn't paying close attention to the segment, but did catch that.

Based on the article, I'm going to stop. Thank you for sharing that!

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Congrats! A huge accomplishment.

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Great topic.

All my life I've been involved in rescue work with local shelters, and have worked difficult dogs that had 'issues' that kept them from being adopted. I volunteered for shelters and fostered and rehabilitated many dogs that would have been euthanized otherwise and saw them through to adoption.

It's very rewarding, and my last foster was almost a year ago. Have not been well enough to do another yet. It requires walking a dog that needs rehabbed so that's keeping me away, and I miss being of service.

My husband I have always had dogs, and currently have my one and only foster failure. He's a love and has turned into a therapy dog for me. Amazing. Who rescued who?

Love birds, but have found I can't keep them as I'm so sensitive to sound. I had gotten a beautiful pair of lovebirds several years ago, and didn't realize how my sensitivity to sound made it too difficult to keep them.

I placed them in a wonderful home, they're very happy. But I appreciated their charm and funny ways they made me smile!

Love horses, and one of the things I miss the most is my inability to keep a horse these days. Used to lease one in the winter from a friend, and loved trail riding, and just being around a stable. Such peaceful creatures. I miss riding tremendously and feel it's a permanent loss.

Your macaw is beautiful!

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Issie, you mentioned sinus node ablation in pots.

Nobody that I'm aware of is recommending sinus node ablation for Pots? (Although nothing would surprise me.) They're using sinus ablation for IST, (inappropriate sinus tachycardia), another form of dysautonomia and sinus ablation has been very helpful for many people suffering with IST. I know Baylor in Texas has had excellent results. Not on pots but on patients with IST dysautonomia.

So I agree with you Issie...Can't imagine a pots patient going through a sinus ablation for pots?

MANY people with pots are misdiagnosed with IST when they in fact have pots and IST patients are dx with pots when they in fact have IST. On my very first visit to this cardio, he said he needed to rule out IST, (even though I had already gotten a POTS dx). So as I'm sure many here know, these two dx's are often confused and misdiagnosed as one rather than the other.

You talked about mca and NE levels and this is a fascinating topic. I'd like to see articles about NE levels and mca. I don't doubt there is a connection between mast cells and NE, but if you or anyone happens to find an article about it, please share the link.

As you know, Mayo clearly states that the number of hyper pots patients compose 30-60 percent of total pots patients. Only 5 to 10% of that 30-60 percent does Mayo say have NE levels of 1000 to 2000 and it's that same small subgroup Mayo suspects have mca issues. (A very small percentage.)

So it's interesting that they're looking at mca in hyper pots patients with NE levels of 600-999 such as yours, I think they've made a clear distinction of the very small number of hyper patients with high NE and the relationship to mca. Nothing in their publication mentions mca in hyper pots patients with NE under 1000.

So it's very interesting that (even though they're not willing to publish it) Mayo is using mca cocktails for the hyper patients with NE levels between 600 and 999. And you feel it's helping. That's a good thing!

I think part of your point is that there are so very few patients with NE levels of 1000 to 2000, (the patients they acknowledge have probable mca,) they're perhaps seeing how low that level might really be. This makes sense in that they should keep moving the bar and see what results patients have, since this science is all relatively new, and these subsets are still small. Makes a lot of sense.

My concern is that I want to be tested for mca and mastocytosis before experimenting with addional drugs. I want to be tested for not only tryptase and plasma histamine but other tests to check for masto and mca by a mastocytosis specialist. I have a strong history of illnesses with a huge mast cell connection, and have been told by an immunologist she thinks I have masto, so it’s important for me to get a full work up. Again, my cardiologist will be working hand in hand with the masto doc on this. I live in a big city and there's only one masto specialist, so I know that it's not an easy thing to find. I get that.

I think we're all trying to make sense of things, and as a group you have done an amazing job. (I'm new here, so can't take credit.) I have found amazing information on Dinet, and am very grateful to everyone who has been plugging away trying to make sense of this. Issie along with many others have been an amazing resource, and I am very grateful for this forum, and all the work that everyone has put into it. This forum has been a goldmine for me in terms of not just understanding facts, but sharing the oddest of symptoms that so many of us share, and knowing I'm not alone. It’s been a comfort to me and I thank you.

As far as treatment and diagnostics, I've always tried to go to the best doctors I can, and respect the fact that the good ones actually do know what they're doing. None of has a medical degree, so the best we can do is see the best docs we can, and run the other way if they don't understand or respect this illness.

Issie, I have a very longstanding relationship with Mayo, in two different Mayo clinics and a variety of specialists. I think you’re in very good hands at Mayo. I feel I’m in excellent hands here, or I’d drive the less than 2 hours to a Mayo clinic very near me. I don’t think I could do better at Mayo than I’m doing with this doctor. I feel working with him and now the masto is my best option.

I think I’ve addressed your concern/question that I find a doctor ‘that is familiar with dysautonoma’ Check! And I agree with you about subsets, and science, and much of this is still being formulated. All any of can do is try and assemble the best ‘team’ of experts who are willing to work together, and to continue to share with each other what we’re finding out!

Godspeed to the researchers and in the meantime may we all have a better day tomorrow than we had today.

Issie, the cardiologist I’m seeing is very familiar with all forms of dysautonomia. He studied dysautonomia and worked in dysautonomia research with J Goldberg and follows dysautonomia research very closely. He has treated IST (another form of dysautonomia) patients as well as pots patients.

Google J. Goldberg, and you’ll see he is an active researcher who has published many papers on dysautonomia! This is whom my cardio studied with at Northwestern and continues to stay in contact with.

The cardiologist I'm working with knows about my mca issues, and in fact will be working with the mastocytosis doctor I'll be seeing specifically to determine if I do in fact have mastocytosis and/or mca as has been suggested by my immunologist among other doctors.

The ablation the cardio I'm seeing is talking about is not ‘heart surgery’ and most importantly it's not something he's saying he or anyone else is currently doing. He was very clear that he thinks the science on this is very near the point where this kind of denervation is very real and may well be helpful for someone with NE levels as extreme as mine. My high NE levels keep me from sleeping more than one or maybe two hours at a time.

This is a serious issue, and he’s very concerned about my trying to live/function with this severe sleep issue caused by the extreme high NE. So if and when denervation becomes a valid avenue for augmenting an overactive sympathetic nervous system and lowering NE he is interested in that, as am I. Again, this surgery is currently not being done anywhere.

So it’s sleep that I’m talking about as my very serious issue with high NE. Ironically, I have a calm demeanor, and don’t seem to have a problem with stress. But sleep is something extremely important to us all, and not getting it is incredibly outrageously difficult.

Issie, let me address the rest of your post in another as this is getting long. So a 2 part response, smiles.

Sometimes I will get a very, very brief 'moment' of knowing I'm going to faint. Had a warning like that once in the shower and was able to crouch down first.

Other times, (especially getting out of bed in the morning) I'll go down with no warning whatsoever. I thought fainting right after standing up from being in bed was odd, but then I read that 'rapid postural changes can cause fainting'.

Once I fainted waiting for an elevator with my husband standing next to me. I was able to say, 'I'm fainting' and he caught me.

So no warning whatsoever when I've fainted getting out of bed, and do so too quickly, but a very, very brief 'moment' on other occasions.

Elieg, I think you misunderstood my post.

You're talking about two different surgeries. You mentioned your BP, and how high it is and you researched this because of your high blood pressure. The ablation surgery you're referring to is described here in the New England Journal of Medicine. It's become a common procedure for people with high BP who DO NOT respond to medication.

. http://www.nejm.org/...56/NEJMc0904179

This procedure of ablation has nothing to do with what I was speaking about with hyper-pots. There is NO ONE yet doing ablation surgery for hyper pots YET. The surgery would not be done for people with high BP but for people like me who have very very HIGH levels OF NE. Mine is over 1400. My cardiologist, also board certified in nuclear medicine, and internal medicine explainedd that 'ablating the nerves at the ganglia for excessive sympathoexcitatory responses in hyper pots" Is a VERY real option in the near future. But it has NOT been tried yet.

This cardiologist is very knowledgeable about dysautonomia. He didn't tell me that.

I mentioned that is was 'heartbreaking' to read on the internet how many patients were unable to get help from cardiologists and other doctors, and were being dismissed as 'anxious' and worse. He then explained to me that when he was studying at Northwestern U. his mentor was a dysautonomia researcher. He told me his name, and I mentioned it another post, as well as a link to his approx 165 published research papers, many of which were on dysautonomia.

So as I said, I'm not sure what you researched in terms of ablations done for dysautomia, but the one he spoke of is NOT being done yet. WIth an NE of over 1400 like I have it is very difficult to sleep at night for more than an hour or two at a time because

catecholamines are at their highest in the wee hours of the morning.

Perhaps you read about an ablation being done for IST, another form of dyautonomia, (again, having nothing to do with high NE). This ablation surgery for IST is common, and often has outstanding and permanent results. Have read of many, many cases being done at Baylor in Texas.

Agreed, have seen this many times. Mayo never fails to add the words pleasant and alert. None of this is meant to be complimentary but simply to refer to state of mind and demeanor.