My epineprhine, glutimate and others elevated- anyone else?

[vision blue]

Hi. I am new to this forum. I have had AI diagnosis for many years - BUT - the more I look, the closer everything looks to CFS as the true cause of the worst symptoms. One of the things I have is the "overexcited" thing with seeming autonomic problems; that is in fact how I found this site - someone's post of their story i swear I could have written myself.

These are my numbers for recent catecholomine etc. testing. Its from Labrix. I'd like to repeat using conventional lab, but navigating and begging from the medical system is such a pain. I'd like to know if anyone else has elevations on any of these.

(This is urine testing. The units are ug per gram of creatinine)
Shown is my value followed by the upper limit the range they gave
serotonin 142.9 H upper limit: 111
GABA 5.1 upper limit 6.74
dopamine 379 H upper limit 208.7
Nor epi 80 H upper limit 42.11
epinephrine 28 H upper limit 5.05
glutimate 129 H upper limit 78.51

I do not think I have a pheochromocytoma, and it appears as if when you don't have that, conventional docs don't care that your brain is being eaten by excitotoxic soup. (and if i do have POTS, which I do not think so, its the hyperandrenergic kind, but its not a perfect fit either)

For those with autonomic symptoms (impossible temperature control, blood pressure problems, heart rate problems, cold extremities, night sweats, hot flashes, sound light and smell sensitivity, migraine type head pain, feeling way overstimulated, dizzy and or vertigo), are any of your catecholomines or other related neurotranmitters etc. elevated? Anyone else have this or similar testing? (alot of different labs offer them under different names). My pattern look strange to anyone else too ? Am sort of stuck on the next steps so those who have been down this road or have numbers to compare would be very helpful

Thanks much. Input greatly appreciated.

 

[Gingergrrl]

@vision blue Have you been tested for the GAD65 autoantibody which attacks the enzyme that converts glutamate to GABA? Do you have an insanely exaggerated startle reflex? Am just curious.

 

[vision blue]

Hi. Thank you so much for replying. Been feeling lately like no one will even try to help even though for years i've used all my accumulated knowledge to help quite a few folks, Anyway, that's a good suggestion, and no have not- but, if you take a look at my GABA number above, its also fairly high, farily close to top of the cutoff- so it seems like the body is succesfully converting to GABA , and GABA is higher than average too as it tries feverishly to keep up. (ditto, on amino acid testing, the elevations suggest body is fighting super hard to the very heavy oxidative burden).

What other antibodies might be of interest here? was reading in CSF, theyve recently been finding antibodies against beta andergergic receptor and acetyl choline receptor. I do have muscle issues as well, but don't think they really fit the pattern of MG. NOt sure if those with CFS and anti acetyl choline antibodies also have MG like muslce problems. I do not know if antibodies against beta andernergic receptors is a commercially availalbe test - have not looked yet- or if its a good choice for me. Up until now, i've gotten alot of tests done ive wanted, but med system is putting the breaks on it.

but still, if i know some brain related autoantibodies that are useful in CFS to test, i will prep a list and do my best to persuade - so if you or anyone knows, please let me know.

in general, i like your idea of seeing where its blocked. I want to order another test that at the same time meaures the cats and breakdown products - maybe i can spot a blockage somewhere if it is one.

on the startle, when i'm at the peak of being "reved up", i do react pretty strongly, Am trying to think if i jump more than i would otehrwise- i think the answer is yes, but its unpredictable. the worst are unexpected sounds, but sometimes they just make the autonomic symptoms worse (indeed one sent me to the hospital) but other times i do visibly jump alot more. Do you have that? do you have elevated epinephrine or nor or dopamine?

thanks much.

 

[Gingergrrl]

Hi. Thank you so much for replying. Been feeling lately like no one will even try to help even though for years i've used all my accumulated knowledge to help quite a few folks

No problem and am happy to help if I can. I have a lot of knowledge on a few topics that I've researched but in general, I lack a solid science background so it may sound like I know more than I actually do .

Anyway, that's a good suggestion, and no have not- but, if you take a look at my GABA number above, its also fairly high, farily close to top of the cutoff- so it seems like the body is succesfully converting to GABA , and GABA is higher than average too as it tries feverishly to keep up.

I think it would be interesting and informative to get tested for the GAD65 antibody but from Mayo and not from Quest or other commercial labs. You do not have to go to Mayo and your doctor can have the blood sample sent there. Are you in the US?

I am not really sure why both your glutamate and your GABA levels are high. I did the Metabolon test and my Glutamate levels are high in every section where it was tested and this test was from a blood sample that was bio-banked about 10 months before I even knew that I had the GAD65 Ab. I am still learning what it all means but GAD65 can relate to type 1 diabetes (which I do not have), to other autoimmune diseases like Hashimoto's (which I do have) or to Stiff Person Syndrome (which I think I may have a very mild version of but no confirmation of this yet from doctors). I do not have a good neuro and would love to have an EMG to test for this in the future (besides having the GAD65 antibody and the startle reflex and some of the muscles symptoms).

(ditto, on amino acid testing, the elevations suggest body is fighting super hard to the very heavy oxidative burden).

Which amino acid test did you do? My oxidative stress percentage on the Metabolon was 100% but we did not get to discuss that section yet so am not sure what it means (except that it is bad of course). I will find out more later this week in Part 2 of my consult.

What other antibodies might be of interest here? was reading in CSF, theyve recently been finding antibodies against beta andergergic receptor and acetyl choline receptor.

I actually did the test for these antibodies and was positive for seven of the nine on the test from Cell Trend in Germany. My main doctor said it showed significant autoimmune issues causing Neuro/Autonomic Dysfunction and now I know that I have autoimmune version of POTS. I am not certain if I have CFS (am still 50/50 on this) but I now have eleven auto-antibodies (GAD65, N-type calcium channel, two Hashimoto's Abs, and the seven from Cell Trend tests). So I have significant autoimmune dysfunction but whether this equals CFS, I am still not certain. And if I can lower the antibodies and improve my symptoms, the ultimate label is less important to me.

I do not know if antibodies against beta andernergic receptors is a commercially availalbe test - have not looked yet- or if its a good choice for me.

It is only available through Cell Trend in Germany to the best of my knowledge. There are several threads on PR on this topic by Lolinda so if you do a Google search of PR, I am sure you will find them. This was a challenging test to coordinate from the US (much easier if you are already in Europe) but I did it and this morning we went to the bank to send the wire transfer in Euro's to pay for it.

in general, i like your idea of seeing where its blocked.

I didn't really even think of it this way but you are right that in my case, I have every auto-antibody and their brother blocking and attacking things and am hoping that I can lower them. My treatment right now is IVIG and will be increasing the dose for my infusion at the end of this week from 24 to 55 grams (in a two-day split dose) which will finally allow me to try the autoimmune dose one time and then my insurance auth is over and am praying that we will get approval that I can do the autoimmune dose for about six months and see what happens. It put my mast cell disease in a remission (even with a four week gap between IVIG's) and am hoping it stays this way.

on the startle, when i'm at the peak of being "reved up", i do react pretty strongly, Am trying to think if i jump more than i would otehrwise- i think the answer is yes, but its unpredictable. the worst are unexpected sounds, but sometimes they just make the autonomic symptoms worse (indeed one sent me to the hospital) but other times i do visibly jump alot more.

I bolded part of your quote above and was curious what was the unexpected sound or situation that sent you to the hospital? Have you ever had what might be considered a "startle seizure"?

Do you have that? do you have elevated epinephrine or nor or dopamine?

Yes, I have an extremely exaggerated startle response to every day sounds. It is not the volume of the sound vs. if it is unexpected and catches me by surprise. The worst was our fire alarm going off in our apt and the reaction was so bad, two doctors think it may have triggered a "startle seizure" but we are not sure.

I have not been tested for Epi or dopamine in at least a year. My Epi somehow was normal when it was last tested but my dopamine was extremely low (off the scale low). I have POTS and do not do well with anything stimulating. Ironically I have an EpiPen b/c of my mast cell disease but thank God, I have never had to use it. And now with the MCAS in remission (with meds plus IVIG) am thinking that I never will but still keep it in my purse anyway.

Hope this helps?!

 

[vision blue]

Hi. Sorry for the delay in responding. Rheum appt and then attending a immune webinar and trying to do some more research.

Not sure I'll remember everything to respond to - lets see. Thanks for all the great responses. I know about sending stuff to other labs (yes, am in the US); e.g. just recently arange to have cytokine panel sent to ARUP and in the past arranged to send blood off to iGeneX when pursuing a lyme possiibliyt (negative0.

I'm guessing your GABA was not elevated? If you have that antibody, then llikely GABA can't kick in. in my case seems less likely. Not opposed to testing, but each test is such a struggle. Thanks on the lab name in germany - i will see what i can do. When my cytokine panel turned up nothing, the rheum is pulling out from doing the tests i request- but in this case i just need to have a tube drawn at the lab, so we'll see.

th efact your dopamine is off the charts low suggests that youre just a bit further along than me in the process- that is, the sequence is overstimulation, like I have now, followed by understimulation. Surprised then though that sounds still bother you- but as you say, its the unexpectedness of it that does, so that may be mediated by something other than dopamine.

autoimmune pots is usually not the hypernandrenergic kind- i feel like i have something very similar as well. Incidentally, is your blood pressure high, low, changeable.?

don't know if have startle seizures- at this point i dont' think it would help to test for seizures. since cats are so high, anything could follow as a result. (I had been getting lots of attacks where heart would speed up, and pound; much to describe, but it would be like a current went through my chest and my head. for my chest, it would leave me with heart going besertk, and for head, the electrical sensation would leave me with feeling repeatedly like my head was flying away. (not quite vertigo which i also get). I got alot of neuro symsptoms at night when trying to fall asleep.

I am not familiar with the testing company you used for catecholomines- do you have a website? i guess i can try googling it. for amino acids, i used Doctor's Data; was third time i checked. 5 years ago, the last time i ran it, i did not have oxidative stress at all. My pattern is so clearly oxidative stress, and with some suggestion myelin is under attaack.

intersting on the ivig. glad you are tolerating it well. I've asked doc for one of two possiblities,that one, and rituxin. but i also have a recurrent herpes virus-which i think is what triggered this all (i see theres a thread on that) - what does it do for your dopamine levels? any increase? Feels like i'm in a race against time that I am losing. HOw many treatments have you had total? i was told its hard to get off once youre on. any bad side effects? did it increase your inflammation? did it bring down your epi and nor epi? (if those are elvated still)

have you done igg subclasses test?

agre with you does not matter what its called. there is so much overlap among autoimmune disease, and CFS is such a composite, and this autonomic dysfunction shows up in a variety of differetn disease contexts.

hate this feeling like i'm always on a adreniline rush - and also knowing the terrible damage it is doing to brain and heart. neurodegeneration is down the road if i can't stop it asap

have you always had MAST cell disorder? in know someone else with that and who got IVIG for autonomic dysfunction/POTS.

did you test positive for NMDA antibodies? i guess i should see whats on that panel.

hate the feeling that i'm in a race against time. once damage is done i think its too late. lots of studies now on how chronic brain inflammation leads to alzheimers and/or other neurodegenerative disorders. (If your dopamine is low, do you have parkinson's symptoms? let's hope your receptor is just desensitized, not broken)

 

[Gingergrrl]

I know about sending stuff to other labs (yes, am in the US); e.g. just recently arange to have cytokine panel sent to ARUP

I did not realize that ARUP did a cytokine panel and have never done this one.

I'm guessing your GABA was not elevated?

I am not sure if my GABA level has been tested but my glutamate tests very high. Could the test for GABA possibly have another name?

Surprised then though that sounds still bother you- but as you say, its the unexpectedness of it that does, so that may be mediated by something other than dopamine.

It's more than just being surprised by sounds, and the reflex is extremely exaggerated. Am sure it is from the GAD65 Ab vs. dopamine.

autoimmune pots is usually not the hypernandrenergic kind- i feel like i have something very similar as well. Incidentally, is your blood pressure high, low, changeable.?

My BP is always low. It ran consistently in the 80's/50's prior to having IVIG and now it runs higher so I was able to stop taking Midodrine. But by higher I mean upper 90's/upper 60's and rarely goes over 100 although sometimes it does.

don't know if have startle seizures- at this point i dont' think it would help to test for seizures. since cats are so high, anything could follow as a result.

I only had one incident that might have been a startle seizure but we are not certain what it was. What do you mean by cats?

I am not familiar with the testing company you used for catecholomines- do you have a website?

Sorry am confused by this. I guess catecholemenes is what you meant by cats? I have not been tested for them in at least a year (maybe two) and I it was either by Quest or Lab Corp (don't remember which).

intersting on the ivig. glad you are tolerating it well.

Thanks and to be honest, I am shocked by how well I am tolerating it. The very first infusion, the speed was way too fast (3 hrs) and I got a horrific headache for 10+ days until I finally went to the ER to rule out meningitis. But once we slowed down the speed (6-7 hrs), have not gotten a headache.

HOw many treatments have you had total?

If you mean the IVIG, I have had four total with next one this Fri. & Sat But they were all low dose and this next one is finally the autoimmune dose in a two-day split dose.

i was told its hard to get off once youre on. any bad side effects? did it increase your inflammation? did it bring down your epi and nor epi? (if those are elvated still)

I don't think it is hard to get off vs. that the gains you made could reverse. The bad side effect was the headache to the first infusion which was too fast of a speed. It did not increase inflammation that I am aware of. I have not measured Epi since having it but it has not changed my startle reflex (but hoping at the AI dose that it will).

have you done igg subclasses test?

Yes and they have always been normal except once IgG subclass 3 was too low.

agre with you does not matter what its called. there is so much overlap among autoimmune disease, and CFS is such a composite, and this autonomic dysfunction shows up in a variety of differetn disease contexts.

Agreed and am finding massive overlap with all of these illnesses.

have you always had MAST cell disorder?

No and it started in March 2015 but my histamine were 4x the normal level on blood test in Dec 2014 (prior to having symptoms). I've had some subclinical symptoms all my life though. Now it is in some kind of remission.

did you test positive for NMDA antibodies?

Have never been tested for these.

hate the feeling that i'm in a race against time.

Agreed but for me it is b/c of my breathing and muscle issues vs. my brain. I feel like my brain is somehow still working normally.

 

[Violeta]

@vision blue, I haven't had my catecholamines measured, and I never dreamed a some of my issues could be related to catecholamines until recently, but I don't know very much about the area. Do you mind if I ask you and also @Gingergrrl a few questions.

Do you think the high levels of all the catecholamines is because of lack of breakdown or because of blocked receptors? Have you tried anything to deal with herpesvirus? Do you have any thoughts on iNOS or ammonia?

And one more, do you find any specific foods make your symptoms worse?

TIA

 

[Gingergrrl]

Do you mind if I ask you and also @Gingergrrl a few questions.

You can ask me anything but I probably will not know the answer!

Do you think the high levels of all the catecholamines is because of lack of breakdown or because of blocked receptors? Have you tried anything to deal with herpesvirus? Do you have any thoughts on iNOS or ammonia?

In my own case, I am now assuming that just about everything is due to auto-antibodies blocking or attacking receptors. I initially tried Famvir (no change good or bad) and then Valcyte (which I did not tolerate at any dose) for herpes viruses but these were not of any benefit to me. I do not know what iNOS means and my ammonia tests normal except for once in 2014.

And one more, do you find any specific foods make your symptoms worse?

I had severe MCAS in 2015 so foods were a major part of the equation for me. Am in some type of remission since starting IVIG and can now eat normal foods without any reactions or fear of anaphylaxis. I have cut my MCAS meds by 50% but still take them 1x/day and still take Cortef. Not sure if any of this helps or is what you meant?

 

[vision blue]

hi gingergirl and violetta-

let's see what i remember to answer...i can always go back and answer more. GABA stands for Gamma-aminobutyric Acid, but if you used quest or lab corp, i'm guessing they did not test for it since their catecholmine test (yes was abbreviating it to cats) is just for the excitory ones- norepeniphrine, epinephrine, and dopamine. But if youi've had amino acid uring testing, it should be on their too.

i was hoping that panel you mentioned also tested for nmda receptors. i'm not sure if its a useful thing for me to chase brain autoanitbodies or not- i guess i can use that for treatment excuse.

in terms of company, the test i posted the numbers from was Merdiian labs, which i ordered through Canary Club, but I do not recommend them(trhough do like canary club). Doctor's Data just started testing the catecholamines ("biogenic amines") - they have 2 panels basic and comphrehensive. Doctors DAta does not let people order directly through them but many online places do so on their behalf- at very different price points. my fave so far is truehealthlabs ; i ordered the doctors data amino acid test thru them this time, and I asked them to find the biogenic amines comphrensive test for me - which they did! it know appears on their website since i requrewsted it - and just ordered it (just occurred tom this sounds like an advetisement- sorry, to be clear i have zero financial or other arrangment with any of these companies - found both canary club and true health labs through web searches, and stuck with those so far).

on foods violetta, for me for absolute years i've been senstivie to tyramines in foods. that means prety much anything aged. when i ate them, i'd get myoclonus when falling asleep for dozens of time a night. i kept it under control by avoiding all aged foods- and there are so many - some of the worst offenders were things like soy sauce and smoked salmon, but really they were everytwhere. Oddly, i did not put that together with being related to all my other stuff until recently, when of course realized that tyramine is also a biogenic amine and can do the same thing as all those other exictary neurtranmitters - dopmaine, epi, nor epi, and glutimate.

violetta = you also asked: "Do you think the high levels of all the catecholamines is because of lack of breakdown or because of blocked receptors? Have you tried anything to deal with herpesvirus? Do you have any thoughts on iNOS or ammonia?"

knowing the cause of my elevated cats is tricky - they can be produced by adrenal glands, by brain, or apparently not known by many, by the immune system itself. its hard to know if the elevated cats are a cause of merely a marker and necessary byproduct of something else. for example, if i'm still fighting an infection, would the cats go up - maybe according to some research. When i used to look in to why i was inteolerant to tyramine, which is broken down in the same way, i wondered if i was naturally deficient in MAO-A. (For COMT, i'm heterozygous genetically for the breakdown of allt he bigoenic amines). genetically, am heterozygous in terms of amount of activity, but clincially don't know. One of the reasons i ordered the new cat test is it has more of the intermediaries and am hoping if i get them all at the same time i can see if my catecholmines are breaking down properly - if not, i'll kow that's the sticking point.

i posted on the the other thread on the herpes connection. acylovir and espeically vancyclovir had worked very well when i first got the rash and the neruo symptoms- but could not tolerate it -0 major esophogaus problems.

No thoughts yet on iNOS or amonia. One uncertainty is I don't want to try decreasing them until i'm sure theyre not playing an adaptive role. What if they are high because my body is trying to repair something? stil of course, this high and i know i'm doing damage. only thing i know so far is that the chemical basis of my autonomic sysmptoms with the high blood pressure, pouiding herart, feeling like i'm wired all the time (not in a good way), sound sensitivity, migraine type headaches and perhaps those head zaps at night, is those high levels, but beyond that, not sure yet. My ammonia level on unirnary amino acids is relatively high by the way- my protein intake is rather low, so something is going wrong for me there- just don't know what.

ok, guess i didn't help much