Is The Mayo Clinic Inclined To Allowing You To Self Experiment?

[jangle]

If you want to experiment on yourself and you have the money upfront to do so, will the Mayo Clinic allow you to try assuming of course you have a halfway good idea?

[roxie]

Do you mean having the experiment done at Mayo?

[jangle]

Do you mean having the experiment done at Mayo?

Yes, but with a drug that's already FDA approved for something else.

[roxie]

I really don't know, it all depends on the dr you get and the way you present it to them. Maybe someone else will have a better answer.

[jangle]

Well I think I'm going to try Dr. Goodman. I'd like to get my NET gene sequenced to see if it's ok. If it is ok, I'd like to get my IL-6 levels measured and possibly other cytokine levels. Even if those come back normal, assuming my gene test comes back normal I'd like to go ahead and self experiment with a IL-6 blocker to try and increase NET expression.

Hopefully Dr. Goodman is on board the new research.

[roxie]

Vanderbilt tests NET. That may be another possiblity

[arizona girl]

Hey Jangle, let us az's know when your headed this way, so we can give you some pointers on where to stay, eat or anything else you may be interested in.

BTW, my cardio just did a genetic panel on me. I came back with the gene mutation mthfr tt homozygous. It is the riskest polymorphism of this particular gene and involves enzymes that don't process folate and b12 causing lack of mythlation and toxic load build up. It is associated with a lot of disease states. So there may be some other genetics to look into. I have a lot of inflammatory markers like elevated crp, homocystine, etc. The picture of my dysfunctionis getting clearer and tighter.

Did u get to read my last pm to you?

[jangle]

Ya Arizona girl I got your last PM. I would like to find an immunologist locally, I don't think I have an immunodeficiency, but I do believe POTS is autoimmune. My Rheumatologist is basically ignorning me and I can't seem to find an immunologist who does anything other than allergies.

Even though I don't know the odds of getting Goodman on board some immunotherapy for POTS I figure my only chance is at Mayo, there's literally nothing doing here in Texas.

[arizona girl]

You still thinking about getting in with Phoenix neuro, at least they know about immunology and are able to treat if they find anything be autoimmune or immune defect? I know you said they are a few months out with scheduling. I do think though goodman is a good start to get things rolling, if you come back positive for those antibodies according to their own protochol they treat that particular autoimmunity. If they don't come back positive I think they try to treat the autonomic symptoms, at least according to forum members who have been to him.

Did you already have a ttt done? I forget what were your symptoms again? What does your rheumy think you have? My rheumy here who is also integrated and out of stanford and mayo rochester, treats with immunotherapy, depending on diagnosis.

If you go to primaryimmune.org they have a physician referral program to immunologists in your area, who test for and treat immunology disease states. That sight also talks about the different diseases states that are under that umbrella, some of them are only found in men. If you read up on them maybe you will recognize your symptoms. BTW rheumies, don't check for all autoimmune diseases, neurologists, endocrinologists and hematologists check for different ones found in their specialties.

Sorry you having no luck in texas, you would think there would be more availability there with such a large population.

[jangle]

I've called neurologists in my area none have even heard of pots. One neurologist I went to told me to pretend the visit never happened - at least I got my money back. My rheumatologist only tested me for connective tissue disease which I do not have. I don't think I have achr autoantibodies but with the research on cytokines and NET I'd hope Dr. Goodman would be open to the idea.

[roxie]

There's a few good POTS dr's in Dallas. One of them may know of a good immunologist

[issie]

Not sure Jangle. You know I've got some positive auto-antibodies going on right now. Dr. G. is of the opinion to re-check in a few months and see what the markers are then. He has given me medrol (prednisone) pack before - so he will let you try it to see if that works.

He did however, allow me to trial a new drug - that I started today - but, it doesn't address the autoimmune things. Working on edema. I'm actually trying Diamox. You can get more info on it at www.prettyill.com . He doesn't necessarily agree with what all Dr. Driscol says, but thinks there may be some benefit to the med. I think I'm the first patient of his to try it. So, we will see what happens. I'm hoping I will do okay. But, most all diuretics are a sulfa/sulfur/sulfite drug and I tend to have issues with those. So, we will see.

I saw a new doc today who is doing more autoimmune testing on me too. So, we will see what these test show and then go from there.

[jangle]

Issie, can Mayo Arizona do genetics testing?

[issie]

Jangle, they do have a genetic team there. I didn't do any testing with them however - 23&me is only $300. That is something you can do on your own and you'd get lots of answers - maybe before you go elsewhere.

Issie

[jangle]

Jangle, they do have a genetic team there. I didn't do any testing with them however - 23&me is only $300. That is something you can do on your own and you'd get lots of answers - maybe before you go elsewhere.

Issie

I imagine Mayo could get it approved through my insurance though.

[arizona girl]

Hey, issie what type of doc is doing your autoimmune testing and what have they found in that area so far? Pm if you don't want to post it.

This mtfhr gene my cardio tested for is hard to get your brain around. I have the most at risk kind and have really high inflammatory markers pointing to the possibility of a cardiac event or stroke in the near future. It concerns me even more because my cousin has a defective gene for glutathione and she is sick like me. I ruled out vascular eds, but my sister and nephew are hypermobile. She's missing the b12 enzyme and has had menegitis three times and my nephew has vitiligo, my dad had a stroke in his 40's and has had to have two angios with 2 and then 3 stints, my mom has late onset rheumy arth, but was always sick. My other sister has adhd and had female defects of her reproductive organs and my brother who is an addict probably has bipolar and is in the wind somewhere.

My lab panels point to the cardiovascular risks, but we already know my immune system is messed up which isn't necessarily the homozygous mthrfr tt gene, so what else am I missing here!!

The only good thing is that I have lost some lbs and some of my basic metabolic numbers are lower then what they were since starting the thyroid and plaquenil, but still high. Then you add in those other high risk inflammatory markers and I don't know if they are high from cardio, autoimmunity or that I'm not able to metabolize some of the meds I'm on properly. Glumetza is known to lower b12. AAAAAAAAh!!

[issie]

Jangle, it's worth calling and asking. I'd call and talk with them before I'd go to the expense of "hoping" this would happen. If the geneticist will read 23&me and help you with it - it would be Great and I'll be the next appt. behind you.

Arizona girl, I have the mutations too and it sounds like you and I are pretty much on the same page. Both have low IGG levels, with auto-antibodies and autoimmune things going on. I have vitiligo and alopecia and now - some other markers for some other autoimmune things. I went to the liver doc yesterday and she is even checking me for more autoimmune things in regards to my liver. So, we will see how that goes. I have yet to get into the endocrinologist to see about my thyroid autoantibodies. I also have all sort of markers in cardio and have recently been dx'd with left ventricular distolic dysfunction - so that can expain some of my issues with edema. *****Note to others: WE DON'T NEED TO ALWAYS BLAME OUR "SUPPOSED" POTS SYMPTOMS ON POTS - IT COULD BE SOMETHING ELSE.****** So now, trying a diuretic to see if that will help. Dr. G is letting me try Diamox. He said he doesn't agree with all the ideas that Dr. Driscol has on this - but, thinks the med may be helpful. I do however, have issues with sulfur/sulfites and most all diuretics are in that family. I've tried two other ones - one was better than the other. But, we will see. You can find more info on this idea at www.prettyill.com . Funny that the normal treatment for low renin/aldosterone is also a diuretic. The kidney doc was afraid to try it with me because of POTS. But, these things alone can make a person have high blood pressure - whether this is a part of POTS or just a different issue ----who knows. So, guess the treatment for this will be tried also - because of the diuretics. Normally, they put you on a beta blocker and high diuretics for this problem. I may be adding my clonidine back in later. But, want to see what just this med will do before confusing it with something else. Plus, the clonidine did increase my edema a little more. But, it sure helped with those horrible surges and up and down bp's.

Right now, trying to find new docs and getting second opinions from some that I already have. Not sure what it all means yet. I hear you on the stroke. Dr. G told me if I have one it will be the hemorrhage type. You know ----I really would have rather been ignorant of that fact. I guess the EDS thing comes into play here.

We really need to compare notes. If you want we can compare our MTHFR results and see how close we are. PM me. Since we both live in the lovely hot Phoenix - maybe, us both seeing the same docs may get us better results - they may dig deeper if they have two with the same thing going on - then for just one.

Issie

[HyperPOTS8]

Issie, sorry to hear you have diastolic dysfunction, but glad that you found out about it. How long have you had high BP's, how high does your BP typically go and for how many hours a day would you say it is elevated? Do you also have periods where your BP is low? I know you said the clonidine helped, but that you had to stop it.

[Birdlady]

Arizona girl,

Definitely take a look and do more research into the MTHFR mutation. I'm heterozygous for that one. There is an active form of folate you may want to consider taking, but of course ask your doctor first.

[issie]

HyperPOTS8, yes, I have swings in my blood pressure. Sometimes it goes low and that's when I get those really bad dizzy spells and feel like I'm going to faint. But, I don't. Some of the times I have to do resistance exercise to get my bp's to come up - but, when they drop the tacky gets really bad - cause it's trying to pull the bp back up. But, my bp doesn't have to drop a whole lot either for the tacky to set in. It can drop to a near normal number and my heart rate be really high trying to bring it back up to the number that is too high in the first place. The clonidine made my swings not so great and the surges less - but, it did cause other issues. Since I'm trying this new med - today's the first day - I don't want to add the clonidine back. I want to see what this med will do on it's own. I may add it back later.

Issie

[HyperPOTS8]

Thanks Issie, what about the highs?

[arizona girl]

Hi dana, The testing was done by Health Diagnositc Laboratory, it was pretty through at least from the cardiovascular aspect. The laboratory provide an explanation and treatment suggestions for all the different abnormalities it found and how they relate to each other. They already are suggesting the methlyfloate or betaine and discuss b6, b12, omega's etc, to bring down the homocystine. They even do a 45 health consult. I guess the good news though is that this gene is being taken seriously in several medical specialties now, so maybe the research will now turn to what else it causes.

I'm already on D3 for low d and already have sublingal mb12. I'm going to start that slow at 1/2 the 1000 and see how I do, my doc had already suggested probiotics, so I'll add the non dairy jarrow in. I really don't want to start the betaine or methlyfloate though till my doc and I talk and she just switched practices, so that isn't going to happen in a couple days.

What they don't say is anything about autoimmunity, which we know I also have. So I've been researching and trying to figure out if that is due to the mthfr double T homozygous that they found or is there another gene contributing to it that I don't know about yet? In the miscarriage forums a lot of those ladies have autoimmunity and the mthfr. Do I go find a genetic doctor/environmental doctor?

Also understand you can have a toxic load because your body can't get rid of stuff your exposed to because of this. So I'm guessing I need to get that checked too and maybe check for food allergies, and then address whether or not I'm processing my synthroid, glumetza and plaquinel right due to this defect. Then there is my ivig to consider too. Well that's what I'm trying to figure out, any pointers are welcome though!

Thanks for your input.

[issie]

Thanks Issie, what about the highs?

Daily I'm about 148/98 - my highest was around 186/117. My lowest was around 93/68. When you swing so drastically - it makes for one more confused body.