My Mayo Trip Experience And Results

[jrlehnardt]

First I will start off by saying that the travel and testing was much harder on my body than I expected. I mean I did expect to not feel well and that it would be difficult on me but I am still recovering and really I have just started to get an hour or two of energy a day just 2 days ago. I was however lucky to have my sister travel with me. I dont know how I would have done this trip on my own. She did all the driving for me, which was a huge help when it came to going off the campus to get food. My sister traveled from Missouri to Georgia where I lived on May 12th and than we flew out of Atlanta on the 13th. I live 2 hours away from Atlanta, so already the 2 hour drive made my muscles spasm pretty bad as I have EDS and I have not been in a long car trip over 30 mins in almost 2 years. My family doctor had me come in the Friday before to get IV fluids since I would be travelling, so I think it probably would have been worse without that. On the flight I was extremely nauseous and had a major headache. I had taken 2 zofran and than a phenergan, also 2 vicodin for the headache. I did not get much relief at all. I think all of this was this bad as I had stopped taking H1 and H2 blocker (Benadryl and Zantac) before my trip to make sure I got accurate labs for any of the testing for mast cells. Because within 30 mins of being able to start taking them again the headaches and nausea were gone and the flight home was nothing like the flight out there.

MONDAY 14th-I started my week with an appointment with Dr. Goodman at 8am on Monday 14th. I had already done my registration over the phone and online so I did not need to be there at 7am, which was a help. I had had a nightmare the night before that Dr. Goodman did not want to listen to me longer than 5 mins, and even though I knew it wasnt going to be like that, I was still nervous as to how good it was going to be. He started off by asking me to share what was wrong with me and he took notes and asked me to explain further on some things. By the time we were done with that he said he wanted to look at my records as all of them had not made it to him, so I brought my last year of records. (My hubby is military and they are not too good at sending medical records, in fact my records from Fort Lewis Washington still have not made it to the post I have been at for over a year,lol). Just my last year is a full 4 inch bider, packed full. So he tooked my notebook and I just waited. He returned about 30 mins later with his plan. He ordered many labs, ARS, echo, ekg, he wanted me to see Dr. Lewis the immunologist, he wanted me to see the cardio electrophysicist, and he wanted me to see a gastroenterologist. I was so excited he had been very thorough, and he was having me see everyone I was hoping to see.

I spent the rest of Monday dealing with insurance as I knew I would be. I have military insurance and the only way this was going to be covered was after dr. g put in all the orders, my family doctor back in Georgia had to do the same and than the supervisor that approved it would have to do so. So the mayo couldnt book me for any appts till insurance approved it. Well labs did not need prior approval and I had already gotten prior approval befor coming out for the ARS. SO after talking with my dr.s nurse and she had been working on it with insurance, nothing had been approved when Monday was done. So I was a little worried.

TUESDAY 15th- So I started Tuesday early at 8am with doing the ARS. I wasnt sure if I would be able to do labs and if so if some of them were fasting , so I didnt eat or drink. Which was a good thing as I did need to fast. Being off of meds and fasting, is what made the trip the worst. I was so nauteous, really couldnt eat or drink and had a headache constantly. So I did the ARS, which the lady was very nice,a nd it went by pretty fast, I was just not feeling well. The first part was where she checked checked my sweat, and that wasnt bad. And the next two parts were breathing, which wow, I did not like as I felt like I would pass out, but I didnt. And than there was the tilt. Not bad as I have done the 45min one and this was only 10 mins. And I am not one that passes out. ( Have only done so before my dx and I was really dehydrated and with a specific gastro problem I have). Than I went and waited to find out about insurance. Yeah everything was approved!!! So I went down and did labs. She took I believe 9 vials and than sent me back with a 24 hr urine container. These I do not like as you to be attached to ur bathroom at all times. So I was glad to get it done and over with. I wasnt sure when to do it as some of my appts had me at the Phoenix campus and I didnt want to be far away from it in my hotel room in the fridge. Most of my extra time was spent laying in the hotel room, due to nausea and headaches. Kind of boring, i know. So I was tired and weak after the labs and the ARS, and I was doing the 24 hr urine all day.

WEDNESDAY 16th- Well this day was my latest morning start, which I loved cause I got 8 hrs of sleep. All the other nights I maybe got 3 hours as I dont sleep well at all. I had an appt scheduled with Dr. Lewis' resident dr. kidd. and this was at 10am and my 24 hr urine was supposed to be done at 1130am. So i thought I would be done with my appt in enough time to get back to the hotel and finish and turn it in. Well I met with the resident which wa very thorough and I was able to tlk to him about pots and mast cells and all my sensitivities. He scratched on my skin and than left to talk with dr. lewis. they were gone about 30mins. Than they both came in and dr. lewis talked with me a lot about it and he scratched on my skin. He looked at the labs dr. g had ordered and was happy that he had ordered most of them. Dr. lewis added a few more.. Well I had to have blood drawn again as some of the tests he had ordered needed to be refridgerated and all the other vials I did werent. So I had 5 more vials added. He also added something to my 24 hr urine. Well by the time all this was done I had to have my sister bring my 24 hr urine container from the airport so I could drop it off. And than I ate lunch there and than went straight for my echo. This took extra long as well as my heart isnt positioned the best way so I am "technically very difficult" to scan. I knew this prior because all my other echoes have been incomplete due to this. But they were able to get everything and my heart was fine, just have tachycardia.

THURSDAY 17th- I started early at the Phoenix campus. So I had to be on the first shuttle over there which is early, especially when I only had 3 hours of sleep and am hungry, nauseous and have a major headache. I had to still wait to see gastro before I could restart my meds and they werent sure that would happen this week. I had an ekg one and than I saw Dr. shen. who was amazing, I love that all theses doctors know what pots is, and how there field is affected by it. So he actually thought this appt was kind of pointless as he thought dr. g was amazing at putting all the pieces together and would do what was best for me. But he did want me to try to get into a cardio pulmonary rehab doctor since I have become deconditioned with me being in bed the last year and a half. (I have had pots for 6 years, dx a year ago and have been in bed for the last 1.5yrs.) Well they were able to get me in right away, but it was at the scottsdale campus, so I had to get on the shuttle and do that fast. I met with dr. scales and what was supposed to be an hour was 2 hours with him. He missed his lunch and so did I. ut it was really great as he explained so many things to me, and he set up ways to recondition my heart. But what I learned most was the bad affect trying to push to exercise aggresively instead of gradually and being patient and build up. he explained the capillaries had shut down, due to me being in bed for so long. and he said that capillaries are like small side roads and veins are like the main highways. he said that me jumping into and aggressivley trying to workout, the body/brain is trying to push blood to the capillaries that are shut down , so really they just beome swollen, and hurt me and not help. But if I try to gradually and slowly start woring out and increase for 6 weeks that the capillaries will open again and it will help me. After 6 weeks he said I could be aggressive. Which for me this was important to know, as I am stubborn, had been very athletic (woeking out 2hrs a day 6 days a week only 2 years ago, pushing through all my pots problems). So with being stuck in be I was tired of it and had been trying to push myself to workout and was being agressive and would do bodyrock (very fast and aggressive) and than I woul do this for a day or 2 and would put myself back in bed for a week. Dr. scales is going to work with me through the internet on this. I than met with the gastro doctor. This is only my personal opinion. If he was the only doctor I came to see, I would not have been happy. He was good and everything but out of all of my appts, this was the one that I felt lacked. He even had my information up as the wrong patient, so when he ordered tests for me and wrote me a rx, they could not find it, until we realized he had put it all under someone else. So this may have been why it wasnt as helpful to me, maybe he was looking at the wrong information, and it wouldnt make sense with what I was saying. ANyway he did think with my symptoms I probably had gastroparesis also probably due to me having eds and pots. he also thought I had an overgrowth of bacteria in my intestines. He wrote me a script for this and is interested how i do with it and if things get better than they will eventually come back and I will have to do another round of it and would always have to do this. he wanted me to do some tests to check my intestines and colon gastric emptying series but we werent able to get it done while there, so that is something I will do here. I mentione my gallbladder being in the wrong place and being hypr active on the hida scan and he didnt even say anything at all. So I will be meeting with a gastro here i georgia to get all this fgured out, and dr. g agrees that I need to get the gastro things figured out as they are causing many problems. So this ws the last appt. that I needed to be off my meds for, so I was able to start my benadryl and zantac and it was amazing how the headaches and nausea went away and I was able to eat. So the rest of the trip I felt my "normal" pots self.

FRIDAY- 18th- So I started with the enocrine catecholamine test where I lay down in a dark room for 30mins and they draw blood and than I stand for 10mins and they draw blood. I dont know if it was becasue I was taking my benadryl and zantac or what but this was the easiest test and I actually fell asleep during it. Than I actually went back to the hotel and swam for the first time and ate and was able to enjoy my day and food. Still not like a normal person but it was a very big change from all the other days. Than I met with Dr. G at the end of his day at 4pm. He went over all my labs and results from my tests and reviewed what all the other doctors had said and this was what he said.

----- He said I was still in the normal range but low for being anemic and just going up one number would helpe me feel a lot better compared to how I feel now. (I have been off and on anemic throughout my life and one of the times they looked more into it, and said it wasnt because I was low on iron but it was the actually shape of my blood cells were too plump, and they were suppose to look into mre , but havent. So I do need to have this looked at here in Georgia) . He said I had low blood volume and if I was going to be there at the mayo longer that he would have me do an infusion of red blood cells to help boost me. He also said that being on a medicine that would expand blood would be beneficial. He said I had low morning cortisol and that I would have to have an adrenal stimulation test done here to check on this. All my other labs came back fine. He said I have Hyper adrenergic Pots from the blood labs. That my catecholamine level was in the 600s laying down (normal) and than well over 1700 s standing. He said that not to be pesimistic but since I have eds, that is not going for me (when it comes to recovering from pots completely), he also said that because I am 32 and even though that is young it isnt young for pots and if I would have gotten it in my teens, I would have a better chance of getting over it. but he said I did have one thing going for me, since my pots came on suddenly after a surgery. So we will see. He recommended I elevate head of bed 4-6inches, wear compression stockings (which I am not so sure about as I dont have low bp all the time), but he said it should help because I have eds. He wants me to drink 2.5 liters of fluid, 1/2 of which is electrolytes (i have been doing this for 6 months already). He said I should get 10g of salt as a minimum daily. He recommended nuun tablets as salt tablets are something I cant handle with my gastro problems. I have to work on my cardiovascular exercises from dr. scales and I need to work on leg strengthening exerises gradually. He recommended I switch from benadryl to cyproheptadine immediately. which had really helped with my brain fog not being so bad. But it still helpes me from being nauseous and being able to eat a full meal and not having headaches. Dr. G really didnt know why benadryl and zantac and now cyproheptadine it has really been helping me. he does think there is some mast cell thing going on but my labs for mastocytosis have all cam back normal my tryptase was at 2.2 still in normal range. So I dont know, and dr. g didnt know and dr. lewis doesnt understand it and the gastro dr. didnt understand it, but it works for me, so they said to keep doing it. He wants me to do propanolol 10mg (which I had tried a year ago but the doctor than put me on 60mg!!!! to start, no wonder I wound up in the hospital, but that doctor was just trying his hardest to get my hr down). But he said that with now salt loading I should do good on it. He said that it should help get my heart rate down, which is his biggest concern for me as he said my tachycardia is the worst he has ever seen. So he said he needs to get my heart rate down and that although there is no evidence that having pots shortens our lifespan, that having my heart work triple time for so long, can not be good for it. He also wants to regulate my bp, and that the propanolol should do this, as my bp is high, normal and low, lol. He said I should do midodrine, due to having eds. If these dont work than the next would be to try clonidine and flutocortisone.

So this was it. I know it is long, but there are so many details left out, so if you have any questions, just ask. I will probably will actually post what labs he ordered so that may be helpful for any of you, and I may just post my doctors dictations of my appts so you can see. But I do have to say I am so grateful that I was able to go to the mayo. These doctors are very smart and understand pots and that was a great experience. I feel like with these answers and a plan I can finally get out of this relapse that has last a year and a half. Oh ya Dr. G did say that he thougt I could be 25% better at 3 months and at 6months be 50-75% better. I know I will never be 100% but 50-75 is a lot better than I am now and I will take it. Thanks for this forum and all of your guys input because it is through this forum that I learned about dr. g and about h1 h2 blocker that helps me greatly.

[roxie]

Wow! That's a lot. I'm glad you got some info!

Idk if I have h-pots or not? But I do have POTS/EDS with labile bp. Did he say anything about Midodrine & hbp, since you swing that way sometimes?

My dr has me on Midodrine right now & i worry about when my bp goes up. Right noe it's ok at home but it's ALWAYS high when I go to the dr like 153/106 compared to 110/76 at home. So he's not sure about Midodrine?

dr Goodmand said you won't recover bc you're in your 30s. Is that saying that EDSers who got POTS in their teens can recover 100%?? I got sick when I was 12. My dr is very very good but I can't always understand what he means.

Oh yeah, propanolol will level out bp swings?

Good luck with everything

[comfortzone]

Curious - does Dr. G call your EDS "EDS" or does he call it joint hypermobility or just hypermobility? Had you been diagnosed by Dr. Tinkle or Clair Francomano or someone else? Also curious if he accepts 'brain fog' as a term.... I find compression sox almost impossible d/t hand hypermobility weakness/issues - so much so that I quit even trying - last time I had to hop to find scissors as I was going to give up and cut them off! By worst tachy he'd seen did he mean the highest number or the quickest to rise? Propranolol has really helped me alot and I've tried a number of other meds... I began with 20 - then went up to 20 twice a day ... even so my hr can be high 90's now and again while at rest - but I'm pretty random that way with hr and bp both... propranolol will mostly keep hr below 70 which makes me feel better - thus far it's my favorite drug... I guess you can pool more as an eds'er with clonidine - but I take it anyway and it's been fine... I mean I do get abdominal rush in my belly in the morning - and OI with standing for prolonged periods - but I'm not nearly as severe as so many - I got asked if I flush - and I said yes - yes I do and this weird belly flushing thing in the morning or going from lying down to standing or sitting - dunno why he asked that - he said is it with position change? I said yes with the belly thing - the other flushing is random...

[DoozlyGirl]

Thanks for posting such a detailed description of your experience at Mayo in Arizona. Sounds like you had a thorough comprehensive evaluation.

I wanted to point out that a tryptase of 2.2 will rule out systemic mastocytosis, but mast cell activation syndrome (MCAS) is still on the table for you. I have been chasing down that diagnosis for months and just met with Dr Afrin, a top MCAS specialist at Medical Univeristy of SC two weeks ago.

Dr Afrin and Dr Castells, from Brigham and Women's in Boston, the other top MCAS specialist feels it is to risky to have patients stop their mast cell meds for testing. I am so glad you did not have worse symptoms, as the travel, change in weather, eating restaurant foods, stress of testing and anxiety of meeting new docs are often huge triggers for mast cell patients.

Patients with EDS and POTS (especially H POTS) and increasingly finding that treating chronic mast cell activation is a huge part in managing their EDS and POTS symptoms. This triad of disorders is fast becoming linked in various ways thorugh the latest research. Several members from DINET have already been diagnosed with all three disorders. Many with the triad of illnesses anecdotally state they can't make sustainable strides in treatment until adequately treating the mast cell disorder.

If you react negatively to your betablocker, then you may want to consider if it is causing symptoms, as most patients with MCAS can't tolerate beta blockers as well as dozens of other meds, because they are known to degranulate mast cells, meaning they cause histamine release causing varied symptoms depending upon which mediators are released.

Check out the Mast Cell Disorders Forum, if you haven't done so yet.

Best wishes in sorting this all out.

Lyn

[DoozlyGirl]

Ohhh I forgot something....

Since antihistamines (both H1 and H2) work so well at eliminating some symptoms, then you may want to keep pursuing mast cell activation as a cause of your POTS.

[issie]

Glad you're getting some things figured out. Yes, the propranalol wasn't good for me. It was too strong and I couldn't take the night dose because it lowered by bp too much. And it's a beta and with MCAS made things worse. Clonidine is working - but, I'm only taking 1/8 of a pill 2 times a day and it does cause more pooling with EDS veins. But, over all it's been the best med for helping with the tacky and high hr associated with high NE levels. He likes to try guifacine before clonidine usually. So, don't be surprised if he tries that first.

My question is on what response you got about Dr. Driscoll and the Diomox med for the fluid drainage idea and it pushing the brain down?

Issie

[jrlehnardt]

I hate bananas- He said alot , I am not sure if he said anything about the high bp and midodrine. He did talk about the beta blocker regulating it, and that midodrine becasue I have eds would probably help. I know everything is just a trial so we will see how it works for me. He didnt say young eds will recover 100% but they are more likely too. So he was pointing out the things against me and the things for me. Everyone is individual, so only time will tell. he did think that my eds is a big culprit to getting pots. He said that with pots even with all the years of dotors learning about it, we still know so little, especially the hyper kind. He did say that it seems to look like pots is from auto immune. Thanks I hope I explained it better.

Nowwhat!- He actually called it joint hypemobility during my first visit and than during my follow up and in his dictations calls it eds. I was dx back at home by my rheumatologist that also has eds himself. I was the one that used the term "brain fog", so I dont know what he calls it or what. I dont know that it really matters? I do know that there is so little everyone knows about pots and that doctors agree on some things and on others they dont. For example Dr. scales doesnt necessarily agree with dr. levine exercise protocol. he agrees with part of it but not all of it. Mainly not starting s agressively. Yes I understand trying to put on and off compression stockings. I do wear silver ring splints and that has made a huge impact in my joint hypermobility in my hands. Not really sure exactlywhat he meant by the worst tachycardic, not sure if it was that my hr doesnt go below 100 really even when sleeping, or if it is because it immediately rises with standing in the first 30sec, or if it is because it gets up to 200 if I start walking consistently, or if it is because of how many years it has been doing all of it. I am thinking maybe the combination of it all. Hope I explained it, if not just let me know.

doozlygirl- Yes, it was awful to stop but it was only nausea,headaches and being full, oh and I started getting sensitive to smells again. I did have one bad episoe on wednesdayy night but I am pretty sure it was a gallblader attack, as I just had forzen yogurt thinking that would be ok since it wasnt ice cream,as I havent been able to have ice cream for years and I have been craving tcby for 4 years and have never been by one,lol. well about 20-30 after I got major back and stomach pain where my gallbladder was, and major facial sweating and lightheadedness and when we decided I should go to the er, it ended before we got there,lol. Only lasted 30 mins total. I have had this before and my doctors have been looking into this. Yes, dr. lewis and dr. g still think i could easily have a mast cell activation disorder, but they know I dont have mastocytosis. I do live in georgia near only 3 hours away from dr afrin, but I dont know how well my insurance would be about seeing him since they just pai for a major trip. But dr. lewis did bring up maybe the pathologist? could look at my old biopsies from my endoscopy if they still have it and do the right stain on it too check for mast cells. Dr. g did mention that if I do have a mast cell thing that the beta blocker may not work for me. with being on an h1 and h2 would that help me be able to tolerate the beta blocker better?? so I could still takeit, as it is his first choice for hyper patients? I have checked out that forum, I just havent spent too much time on it yet. I feel like I dont have as many problems that are talked about but yet the h1 and h2 help me so much. And I have a daughter that has had problems that I wonder if it is all mast cell for her.

issie- yes he did mention guifacine too. So far I have been on the propanolol for almost 3 days. I have been extremely tired. It has lowered my bp to 80/60s and lowered my hr just a little, not much at all. Byt it was about the 4th day last time that I didnt do well, so we will see. I actually never got it printed out to bring to him before I left, and it was just too much on me to try to get it printed at the hotel. And I never made it over to the arizona doppler as the mayo had me doing stuff and than I was too wiped out to go. So I figure I will work on my labs and tests I need to do here and than maybe at a later time go and see them to look for ccsvi. I definitely would be interested too, if anyone does see dr. g and gives it to him and what his thoughts are on it. I am sorry I wasnt able too.

[Lemons2lemonade]

Thank you for sharing!

[mwise]

jrlehnardt-I have Gastroparesis. It was dxd by being scoped. I had a Gastric Emptying Study that came back normal-one number higher would have been abnormal and I was already being treated with Domperidone which helps with motility and nausea. They had me try Reglan and Erthyromycin, but I couldn't tolerate either. You may want to change your diet to a low fat diet which will help with motility/digesting the foods. It really made a difference for me. I was ready to have a peg tube put in because I couldn't eat and lost so much weight. I also recommend the book: Calorie Fat & Carbohydrate Counter by the Calorie King (www.calorieking.com). The key is to keep your fat intake low at meals. More small frequent meals also helps. Good luck and I am happy you had good results at Mayo. Thank you for sharing.

[jrlehnardt]

mwise- thanks yes i have been eating small meals and limit fat mostly except when i give in because i just really want something, lol. i wasnt able to do the emptying study but they want me to have it donr, and they recommeneded i go to a gastroparesis nutrition class. i still dont know for sure but we will see.

[RichGotsPots]

wow, great narration!

I think I read something about Dr g being a catecholamine expert. But since you are for sure hyperadrenic I dont understand why he doesnt address that more..? Also how does he know that you are low blood volume? I wish for once I would here of one of the clinic thinking outside of the box. really salt loading, water loading, nuun tablets, compression stocking,, these are all the basics.. Cyprohep is interesting though and Propranolol sounds interesting too since its a sympatholytic too. If it doesnt work here's a list I found of all sypatholytic BB:

Beta Blocker

• Non-selective agents
  
  • Alprenolol
    
  • Bucindolol
    
  • Carteolol
    
  • Carvedilol (has additional α-blocking activity)
    
  • Labetalol (has additional α-blocking activity)
    
  • Nadolol
    
  • Penbutolol (has intrinsic sympathomimetic activity)
    
  • Pindolol (has intrinsic sympathomimetic activity)
    
  • Propranolol
    
  • Sotalol
    
  • Timolol
    

  [*]β1-Selective agents

  • Acebutolol (has intrinsic sympathomimetic activity)
    
  • Atenolol
    
  • Betaxolol
    
  • Bisoprolol
    
  • Celiprolol
    
  • Esmolol[39]
    
  • Metoprolol
    
  • Nebivolol
    

  [*]β2-Selective agents

  • Butaxamine (weak α-adrenergic agonist activity) - No common clinical applications, but used in experiments.
    
  • ICI-118,551 Highly selective β2-adrenergic receptor antagonist - No known clinical applications, but used in experiments due to its strong receptor specificity.
    

[RichGotsPots]

For those of us who have these swings in BP I dont know how BP lowering meds can help..?

[issie]

Interesting that the antihistamine he wants you to take lowers seratonin. Did he make a comment on that? I know there have been some things I've read thinking that seratonin could be too high in some of us and could be a reason why SSRI's don't seem to help.

Issie

[jrlehnardt]

RichgotPots- what do you mean by, he doesnt address it better about catecholamines? As for low blood volume, that is a question I have as well. I am planning on calling today and asking if there was a test that I had that shows that, and if not what is the test that will check on that? I dont really know much about the difference of beta blockers, what does it mean when you say that propanolol is sympatholytic ? is this good or bad? I have wondered the same thing with loweing my bp, and since I have been on it my bp has been 90/60 conistently. I know it isnt too low but I feel awful, I will wait longer as they said wait 1-2 weeks for my body to adjust to it. He did say to add midodrine, doesnt this help increase bp, s maybe that will level me out. I am picking up the rx today.

Issie- He didnt mention that at all. He just preferred I take it over benadryl as , benadryl was more drowsy and in turn he thought my brain fog would not be as bad if I switched. which that has improved. My only thing is on the mast cell forum, some have mentioned that they like to save the bendaryl drugs as a rescue med and not use as a daily med. And they are on zyrtec, allegra and zantac. I wonder if I would be better on this combo? I did try zyrtec before and didnt like how I felt, but that wasnt in the combination of all of them.

[jrlehnardt]

Here are my labs that I had done while there.

Print

Results

• 
  Adrenal (05/18/2012 8:48 AM MST)
  Name Result Normal Range Norepinephrine, Supine 605.0 pg/mL 70 - 750 (Supine) Epinephrine, Supine 19.0 pg/mL See Comment Dopamine, Supine 16.0 pg/mL See Comment Norepinephrine, Standing 1923.0 pg/mL 200 - 1700 (Standing) Epinephrine, Standing 56.0 pg/mL See Comment Dopamine, Standing 28.0 pg/mL See Comment
  
• 
  General Chemistry (05/16/2012 1:08 PM MST)
  Name Result Normal Range Ca 10.2 mg/dL 8.9 - 10.1 Phos 3.9 mg/dL 2.5 - 4.5 Creatinine 0.8 mg/dL 0.6 - 1.1
  
• 
  Parathyroid (05/16/2012 1:08 PM MST)
  Name Result Normal Range PTH Serum 25.4 pg/mL 15.0 - 65.0
  
• 
  General Chemistry (05/16/2012 1:08 PM MST)
  Name Result Normal Range Estimated GFR > 60 mL/min
  
• 
  Special Chemistry (05/16/2012 1:08 PM MST)
  Name Result Normal Range Gastrin, Serum 25.0 pg/mL
  
• 
  Immunology (05/16/2012 1:08 PM MST)
  Name Result Normal Range Tissue Transglut IgA Ab <1.2 U/mL <4.0 (Negative)
  
• 
  Immunology (05/16/2012 1:08 PM MST)
  Name Result Normal Range Gliadin IgG <10.0 Units <20.0 (Negative) Gliadin IgA <10.0 Units <20.0 (Negative)
  
• 
  Immunology (05/16/2012 1:08 PM MST)
  Name Result Normal Range Endomysial Negative Negative
  
• 
  Tumor Markers (05/16/2012 1:08 PM MST)
  Name Result Normal Range VIP 51.0 pg/mL <75
  
• 
  Immunology (05/16/2012 12:35 PM MST)
  Name Result Normal Range Tissue Transglut IgG Ab 2.4 U/mL <6.0 (Negative)
  
• 
  Timed Urine Chemistry (05/15/2012 11:36 AM MST)
  Name Result Normal Range U Na MML 152.0 mmol/24 hrs 41 - 227 U Na Conc 92.0 mmol/L U Na Duration 24.0 U Na Volume 1650.0 mL
  
• 
  Timed Urine Chemistry (05/15/2012 11:36 AM MST)
  Name Result Normal Range U Creat Conc 63.0 mg/dL U N-Methylhist 89.0 mcg/g Cr 30 - 200 U N-Methylhist Duration 24 U N-Methylhist Volume 1650 mL
  
• 
  Timed Urine Chemistry (05/15/2012 11:36 AM MST)
  Name Result Normal Range U Metaneph 87.0 mcg/24 h U Total Metaneph 486.0 mcg/24 h U Metaneph Volume 1650 mL U Metaneph Duration 24 U Normetaneph 399.0 mcg/24 h
  
• 
  Endocrinology (05/15/2012 11:36 AM MST)
  Name Result Normal Range U BPG2 Conc 200.0 pg/mL U BPG2 330.0 ng/24h < or = 1000 U BPG2 Vol 24 U BPG2 Duration 1650 mL
  
• 
  Differential (05/15/2012 10:17 AM MST)
  Name Result Normal Range Nucleated RBC 0.0 /100 WBC
  
• 
  Blood Cell Count (05/15/2012 10:17 AM MST)
  Name Result Normal Range Hgb 12.3 g/dL 12.0 - 15.5 Hct 37.7 % 34.9 - 44.5 RBC 4.21 x10(12)/L 3.68 - 4.88 MCV 89.5 fL 82.7 - 96.8 RDW CV 12.2 % 11.9 - 15.5 WBC 4.7 x10(9)/L 3.4 - 10.6 Platelet Count 256.0 x10(9)/L 149 - 375
  
• 
  Differential (05/15/2012 10:17 AM MST)
  Name Result Normal Range Neutrophils Absolute 2.26 x10(9)/L 1.40 - 6.60 Lymphocytes Absolute 1.92 x10(9)/L 1.00 - 3.40 Monocytes Absolute 0.38 x10(9)/L 0.20 - 0.80 Eosinophils Absolute 0.1 x10(9)/L 0.00 - 0.40 Basophils Absolute 0.03 x10(9)/L 0.00 - 0.20
  
• 
  General Chemistry (05/15/2012 10:17 AM MST)
  Name Result Normal Range Creat-CT,IVP,MRI,Hem 0.7 mg/dL 0.6 - 1.1
  
• 
  General Chemistry (05/15/2012 10:17 AM MST)
  Name Result Normal Range Estimated GFR > 60 mL/min
  
• 
  Enzymes (05/15/2012 10:17 AM MST)
  Name Result Normal Range ALT 15.0 u/l 7 - 45
  
• 
  Enzymes (05/15/2012 10:17 AM MST)
  Name Result Normal Range AST 16.0 u/l 8 - 43
  
• 
  General Chemistry (05/15/2012 10:17 AM MST)
  Name Result Normal Range Na 138.0 mmol/L 135 - 145 K 4.4 mmol/L 3.8 - 5.0 Cl 100.0 mmol/L 100 - 108 TCO2 28.0 mmol/L 22 - 29 Anion Gap 10.0 7 - 15
  
• 
  General Chemistry (05/15/2012 10:17 AM MST)
  Name Result Normal Range Glucose, Plasma/Serum 97.0 mg/dL 70 - 100
  
• 
  Glucose Studies (05/15/2012 10:17 AM MST)
  Name Result Normal Range A1C 5.4 % 4.7 - 5.8
  
• 
  Thyroid (05/15/2012 10:17 AM MST)
  Name Result Normal Range S-TSH 0.88 mIU/L 0.30 - 5.00
  
• 
  Special Hematology (05/15/2012 10:17 AM MST)
  Name Result Normal Range Folate >20.0 ug/L >=4.0
  
• 
  Special Hematology (05/15/2012 10:17 AM MST)
  Name Result Normal Range B12 925.0 ng/L 180 - 914
  
• 
  Special Hematology (05/15/2012 10:17 AM MST)
  Name Result Normal Range Ferritin 42.0 mcg/L 11 - 307
  
• 
  Special Chemistry (05/15/2012 10:17 AM MST)
  Name Result Normal Range Cort AM 5.2 mcg/dL 7.0 - 25.0
  
• 
  Immunology (05/15/2012 10:17 AM MST)
  Name Result Normal Range AutoAbs to Proteinase 3 <0.2 Units <0.4 (Negative) Myeloperoxidase Ab,IgG <0.2 Units <0.4 (Negative)
  
• 
  Enzymes (05/15/2012 10:17 AM MST)
  Name Result Normal Range ACE 19.0 u/l 8 - 53
  
• 
  Immunology (05/15/2012 10:17 AM MST)
  Name Result Normal Range Tissue Transglut IgA Ab <1.2 U/mL <4.0 (Negative)
  
• 
  Immunology (05/15/2012 10:17 AM MST)
  Name Result Normal Range Gliadin IgG <10.0 Units <20.0 (Negative) Gliadin IgA <10.0 Units <20.0 (Negative)
  
• 
  Immunology (05/15/2012 10:17 AM MST)
  Name Result Normal Range ANA 0.2 Units <1.1
  
• 
  Immunology (05/15/2012 10:17 AM MST)
  Name Result Normal Range ENA Scrn 3.0 1 - 19
  
• 
  Special Chemistry (05/15/2012 10:17 AM MST)
  Name Result Normal Range Tryptase 2.2 ng/mL <11.5
  
• 
  Special Chemistry (05/15/2012 10:17 AM MST)
  Name Result Normal Range 25-H D2 <4.0 ng/mL 25-H D3 31.0 ng/mL 25-Hydroxy D Total 31.0 ng/mL
  
• 
  Endocrinology (05/15/2012 10:17 AM MST)
  Name Result Normal Range Normetaneph Free 0.74 nmol/L <0.90 Metaneph Free 0.21 nmol/L <0.50
  
• 
  Special Hematology (05/15/2012 10:17 AM MST)
  Name Result Normal Range MMA Serum 0.08 nmol/mL <=0.40
  
• 
  Immunology (05/15/2012 10:17 AM MST)
  Name Result Normal Range GAD65 Ab 0.0 nmol/L <= 0.02
  
• 
  Immunology (05/15/2012 10:17 AM MST)
  Name Result Normal Range N-Type Calcium Channel Ab S 0.0 nmol/L <=0.03 P/Q-Type Calcium Channel Ab S 0.0 nmol/L <=0.02 AChR Muscle Bind Ab 0.0 nmol/L <=0.02 AChR Ganglionic Neuronal Ab, S 0.0 nmol/L <=0.02 Neuroimmunology Interp See Comment ANNA-1 Serum Negative Titer <1:240 ANNA-2 Serum Negative Titer <1:240 ANNA-3, Serum Negative Titer <1:240 AGNA-1, Serum Negative Titer <1:240 PCA-1, Serum Negative Titer <1:240 PCA-2, Serum Negative Titer <1:240 PCA-Tr, S Negative Titer <1:240 Amphiphysin, S Negative Titer <1:240 CRMP-5, Serum Negative Titer Striat Muscle Ab Negative Titer <1:60 Neuronal (V-G) K+ Channel Ab 0.0 nmol/L <=0.02
  
• 
  Special Hematology (05/15/2012 10:16 AM MST)
  Name Result Normal Range Sed Rate 10.0 mm/1 h 0 - 29
  

[issie]

I do reserve Benadryl as something if it's really, really bad. If you think the new allergy med is helping - stay with it. It also has some calcium channel blocker type properties which can work on your blood pressure. The propranalol - is one of the drugs they give for HyperPOTS. Just sometimes if there is a mast cell issue - we aren't able to tolerate any type of beta blockers because it degranulates mast cells. That may not be one of your problems - but, since the allergy meds seemed to help it might be. But, they also work on other things than just histamine - so, they could be helping for a whole other reason and not a mast cell problem. (Hope that made sense.)

So, if you are seeiming to tolerate the propranalol and it is lowering your heart rate and helping you bp then it could maybe be okay. It lowered my bp too much and I get lower with sleeping and couldn't take the night dose. But, I did feel better in the day time on it. But, because when it wears off - you have to keep the amount steady in your body --it can cause a surge in your blood pressure if it wears off. That's why the two doses a day thing.

As for allergy meds. I'm not doing that good on any of the H2's that I've tried. I don't know if it's the dye in them or what - but, so far the claritin has been the best of the H1's. It however, makes me tired feeling and it's not supposed to - but, it does. So, was wondering about the new allergy med you're on. I never did well on any of the SSRI's and wonder if the reason is high seratonin issues. SSRI's increase the circulating seratonin in the body - if you need less - it will make you worse not better and actually cause a seratonin storm. So, it was interesting reading about this med. A calcuim channel blocker will also vasodilate your veins. So, it does sound like he is giving the midodrine to cause a constriction of your veins and the other meds to do what they do. Sort of contradictory things ----but, it seems that works for some. You fix one thing and then fix the side-effects of that with another med. It's just getting the combination right that is tricky. I'd try to do what he says and give it a good trial and see what happens. Be sure and keep us posted on your results and what you figure out.

I found it hard to read your lab results - but, one thing I noticed your total Vit D - is still in the low range. They want it up at least to 50 some alternative docs say higher.

It didn't appear that you have any autoimmune things going on - so that's a good thing to have ruled out. Many of us with mast cell have some sort of autoimmune component. I have low Igg and IGG subclass 1 levels and autoimmune issues - vitiligo and alopecia.

You did have high NE levels and working more on the sympatetic system would lower those. But, they could be high for a reason - who knows what our bodies are doing and why. Especially with EDS thrown in to the mix of it all. I've been working on lowering my blood pressure and heart rate - when I do this - I seem to feel more tired and lethargic. It's nice to have a bit of a break from the surges though. Just questioning the long term affects and if it will be good. Wish I could find a better solution.

Issie

[RichGotsPots]

sympatholytic means it brings down the NE or adrenaline level and since you tested sky high for that making you Hyperadrenic category that's a good thing. If I test high next week then I'll know not to take any meds that can raise my adrenaline levels..

[RichGotsPots]

from what i read on wiki: "Some doctors prefer to start patients on Midodrine without the concomitant use of Beta blockers and then add Beta blockers once the dose of Midodrine has been properly adjusted. This gives the Midodrine time to start raising the patient's blood pressure which often helps avoid the hypotension that is a common side effect of Beta blockers. Obviously lowering the blood pressure of a POTS patient would exacerbate any existing orthostatic hypotension."

To me it's just a delicate balance that seem like a risk. Most people that have taken a poll on here voted that betablockers and midodrine are not very tolerable. And I'm not sure but I think you have to be weened off of both but what it the side effects are too bad from on then you are stuck on the other without the balance.. If get told to try this combo which I might I'm going to take 1/4 of both doses to start...

[jrlehnardt]

issie- thanks that does make sense. but so far, so good and i have been on it sinve the 18th. i am able to eat, not nauseous, and until today i havent had a headache. i did just start midodrine last night so i am not sure if that caused my headache? i am waiting patiently to see my results with propanolol, still not feeling too good, my bp has been low, but just started midodrine last night. heart rate lowered just a tiny bit, so we will see. still just letting my body get used to the new meds. last night was pretty bad with the tingling in my legs. not a surprise my d levels were low, dr.g said they were fine. but i have not seen sunlight in forever , but i have made a goal to get some, so hopefully that increases.

richgotpots- thanks for explaining that. which meds raise adrenaline levels? well i am hoping that since the majority of pots patients dont have the hyper kind, that is ehy they didnt do well on propanolol and midodrine, and i hope it works for me. do we know what combination typically works for hyper pqtients with eds?

[issie]

You will probably be able to tell pretty quick what the meds will do for you. I'm super sensitive and can tell within a few days, usually - if it is going to be something I can tolerate and maybe the side effects will get better . . .or if it's so bad - there's no way I want to try to continue it. I think everyone is different and there is no way to determine what will work for each person. There is a whole lot of experimenting going on with us and HyperPOTS and EDS. Not enough studies and they don't know why, what or what for. So, will be interesting to see how you do. I'm currently on clonidine and a few other things that are mostly for EDS but they help with POTS. But, I'm having a whole lot of edema and that needs to be addressed.

Issie

[sue1234]

jrlenhardt, I am not sure, but I don't think you are supposed to take midodrine at night. Maybe someone who knows can chime in?

[issie]

Most people have to take it three times a day. (That was my instructions on how to take it.) You can do a back search on it and see how others are using it.

For me -----it was the worst drug I've ever tried. But, it may be okay for others. Both Rama and I were trialing it at the same time and it did a number on both of us. Talking about an emotional mess. I couldn't quit crying on it and it took awhile for it to wear off. It made me more dizzy too. Rama's words for it was "mido maddness". An herb that works smiliar to midodrine is Butcher's Broom - I call it midodrine light. Did the same thing to me. That's one way I figured out I don't need to constrict my veins. Both things increased my blood pressure - pretty badly. If you already have high bp - you'd need to take something to lower it FIRST - like the propranalol and then add the constricter - midodrine or else you'd have way too high bp's and issues. It's not supposed to cross the blood brain barrier - but, I swear it did on me.

But, there's only one way to find out how you will do on something and that's to try it. It may be the perfect thing for you.

Issie

[sue1234]

I was meaning that you are not supposed to take it within hours of lying down to sleep, not about how many doses people take per day. I was thinking it keeps your b/p up when lying down, and that is not good.

[jrlehnardt]

So far, I just started midodrine last night. I took half a pill instead and took it at 9pm. I woke up at midnight an my legs felt weird and i felt weird, but checked my bp and it was 90/56 almost the same as it is just on the propanolol. I was sooo tired but i didnt feel right and couldnt get back to sleep till 4am. I than took my morning dose at 9am, still only took a half of a pill, and i did ok, still no change on bp. I am suppose to be taking a full pill 3x a day but I want to wean myself on it just in case it is really bad on me. I do think my veins possibly need constricting because over the last few years, my legs will act up at night, like restless leg and they willl be cold and the only thing I have found to help is if I take a hot bath , (even though that makes my pots symtpoms worse, but it seems to help my legs not be so cold). Also my husband will squeeze my calves and feet when my legs feel weird so I hope that midodrine is one thing that helps.

[issie]

Cold constricts and Hot vasodilates. So, a hot bath would vasodilate your veins - not constrict them.

Issie