DadJake

Ok, so I'm told I have Lyme disease causing all of my symptoms. My testing wasn't that great, but clinically I have so many symptoms that I am being treated with antibiotics. After 5 days of Antibiotics, I have to stop as I start feeling very sick (Nausea, Malaise, Terrible Anxiety, Crying Jags, body aches, disequilibrium, etc.) Some of these symptoms are baseline symptoms, but they exacerbate like crazy with the antibiotics. Before I even open my eyes each moring, my anxiety is going bad. I get out of bed and try and drink a little coffee to wake up my head. Take today for example: I woke up and my legs were going all over the place in bed. My head felt weird inside (hard to explain), but feeling like I'm not getting any blood flow or something along those lines. I took 1mg of Klonopin and 1mg of Xanax at the same time. I just started on Neurontin 300mg 2 x day. I also took a small piece of percocet to calm down my CNS. Well none of this worked. My anxiety was topped out even with all of that on boarde and I was barely sedated. So, I said screw it, let me try some Benadryl about 30 min. later. I just took 25mg of liquid Benadryl and 5 min. later, my Anxiety is pretty much gone and only then do I start feeling fatigued. The crying goes away and my mood comes back a bit, still no where that is should be, but the despair and feeling like I'm dying is gone. I'm googling all over the net on this MCAD and I see many symptoms, but I don't see anxiety as being a symptom. I did see something about Central Nervous System problems and even mood disturbances, but nothing about this crazy anxiety I get. I've been in the ER and given 3-4 mg of IV Ativan and I'm thinking they gave me placebo water injection as it does nothing and doesn't even sedate me. I should also mention that I can't catch my breath while I'm having these attacks. I start breathing like someone with COPD, as in holding my breath, but not on purpose. I guess my body is trying to compensate some how. I'm not sure if this is a symptom of Lyme and die off from toxins, or if it's MCAD combined with my Lyme. Perhaps, MCAD is just my underlying problem. I need a Dr. close to Maryland to get the diagnosis and if someone has articles on what I'm describing symptom wise related to MCAD, could you give me some links to read up on ? Thank you everyone in advance, Justin

Hey Everyone, Just got out of the hospital as my Sympathetic Nervous system was going bananas, so much that it was affecting my breathing all day long. I was short of breath and scared as can be. I feel lots of Adrenaline shooting down the middle of my chest. Not so much in the heart area, maybe b/c I'm on Coreg (beta blocker). I had my laptop and saw Mestinon listed as drug that helps with the Sympathetic problems that some of us have. I literally could not sit still in the hospital bed. My legs were going all over the place. My arms felt tremourous inside and I just felt like death. The only thing that helped was getting up and walking around, but I tire so easily. I showed the Dr. this drug from the site and he doesn't understand any of this. I'm wondering how effective the drug is before I waste my time trying to find someone to give it to me. I have a Dr. Friend that I think I can convince to start me on a low dose anyway, but I want to show him the feedback from here. BTW, Xanax and Klonopin only sedates my head, but does NOTHING for what I'm feeling in my body. It just won't relax and I have forgotten what that feels like. So frustrated !! Thank you so much in advance, Justin

Amazingly, I am having a lift in my mood after just this first dose. The literature states 4-6 weeks before you feel the effects of it. I didn't cry once today and thats a record for me in I'd say 6 mos. or so. All I can say is wow ! I wish I could say many symptoms have gone away as well, but I'll take this for now. Even my anxiety wasn't as crippling today. Funny, as I tried taking 5-HTP in the recent past and it did nothing at all. I hope I'm not jinxing myself. Justin

Dr. thinks an SSRI will help me. We chose the Zoloft b/c my father had bad anxiety/depression early in life, although he didn't have POTS or any form of Autonomic dysfunction. But he has done well on this drug for 30 years or so now. So, I took 25mg this morning. I swear, within 10 min. of taking the pill, I had horrible heartburn. I took some Maalox and Gaviscon and ate something immediately. I took my kids to their soccer games and I was ok there, but when I came home, boy was I wiped out. So, all day, my stomach has been rumbling and I'm having gas. I ate nothing that would give me this. I'm reading up on these types of drugs and it says 80% of Serotonin Recptors are located in the Stomach. My mouth is as dry as can be and my food is all of a sudden tasting funny. Lastly, I was having the chills real bad, so bad that I had to turn on my heat. I was telling all of this to my father and he says impossible that such a small dose could do this, but I swear by these new symptoms and I'm only on day 1. I'm thinking this might be a good thing b/c it's activating the receptors in the gut. It sure doesn't feel great though. Any thoughts ? Thx, Justin

In my last post, someone replied the following "As my electrophysiologist told me yesterday, in POTS if you block the hearts ability to compensate for whatever it's compensating for (ie low blood volume, loose blood vessels) then some will have problems like I did. " So initially, I was place on Acebutolol 200mg 2 x day. This is a centrally acting Beta Blocker. It did good in controlling my Heart Rate and I guess Blood Pressure, but Blood Pressure was never an issue with me since I have Hyperadrenergic Pots. It would go up from time to time, but never past 140 off the beta blocker. So on the Beta blocker, I'm like low 100's with my top BP number and my resting HR is 70's to 80's with about 105 or so on standing. This was way better then the 160 or so I would have on standing. I was switched to an equivalent dose of Coreg on the advice of the ANSAR Dr. who says Coreg targets Alpha 1, Beta 1 and Beta 2 receptors which you don't get all of this with the Acebutolol. Well, I don't feel any difference or better at all on this drug. I've been reading how Beta Blockers can cause depression in people and I've been having big time depression that doesn't seem to have a source that I can identify with. I cry like a 2 year old very often several times per day. Some of it is dealing with a chronic illness, but it's too extreme, which tells me it has a physiological component perhaps. The other thing is that I feel like I'm not getting proper blood flow to my brain. When I wake up, I'm shaking all over the place. Today, I noticed my vision was blury after I got up and then came back to normal about an hour after awakening. I feel tender spots all over my scalp and part of this feels like brain damage in the head with the weird sensations I'm getting. It's like electrical, but constant in different areas. So 2 questions: If the Beta Blocker is causing problems, I want off of it. I took half my dose last night and nothing has changed. Today, I took half the dose and then added another 1/4 as the anxiety is getting bad and hard to tell, but I think I'm already getting rebound headaches. 2nd. Is it possible this is infection in the brain causing all of this. I was posting some of this in an anxiety forum and I got a private message that I should be tested for Lyme disease as many of my symptoms are found in the this disease. Sure enough, I'm looking around online and finding this to be true. Justin

Julie, I do get the tightness in the throat from time to time. Most of what I feel is an overactive Sympathetic drive throughout my body. I get short of breath at rest, just laying down, also with exertion of course too. Benadryl does help calm me down sometimes, but I have to drink the Liquid. I will read up on this Mast Cell stuff and see about getting tested. FYI, I called the ANSAR company and told them where I lived. They gave me a list of Dr.'s close to me, which was only 2, but they were able to take me within a week, guess I got lucky. Here is the link to ANSAR home page: Click Here I'm cutting my Coreg in half as of tonight. I'm gonna see what happens with a 2 week wean. I know I'll get rebound tachycardia at first, but I have all of the symptoms that I first started taking it for even on it, so we shall see. Perhaps I'm bringing down the Parasympathetic and the Sympathetic isn't following as planned. I was on Acebutolol prior to this Beta Blocker, and didn't have much luck with it either at 200mg 2 x day. Again, my Blood Pressure is not the issue nor the reason for these meds. I was reading tonight how they can cause depression and low Testosterone, both of which I have now. In fact, I am now on Testosterone Injections as my level was 150 on a range of 300-895. Crazy stuff going on in my case. Justin

Julie, Forgot to mention that I take Klonopin 2 x per day already. The Xanax is on top of that, so you can imagine how bad it is. I can't sedate myself even with that. I've been adding Benadryl to the mix and even low dose Percocet. I can feel it's my Central Nervous System going bananas. Lots of weird sensations in the head. Now I'm getting body aches too. So many symptoms I didn't list them all. The ANSAR test was done locally, but the interpretation came directly from a Dr. at the ANSAR company who designed the test. His words were spoken to me through my own Dr. Justin

I was told it was Hyperadrenergic POTS. So I get tachycardic when standing real bad, but my blood pressure doesn't budge. The Autonomic Dr. says that the Coreg should help bring down the Parasympathetic and the Symptathetic should follow in due time. So, I might be bringing down the Parasympathetic, but the Sympathetic is not following. Maybe I should wean off the beta blocker. So lost... I had every test known to man and my thryoid is fine. My plasma norepinephrine is about 40 points out of the high reference range. They checked me for an adrenal tumor and MRI's of the head, etc. Everything is normal otherwise. Justin

Hello again everyone, I thank everyone for their replies in my first post. I just had an ANSAR test yesterday. The Dr. says I have Parasympathetic excess. He says I have too much of the calming which is driving up the Sympathetic nervous system. He describes it like a sea saw and says mine is broke and off the ground. He went on to say that the treatment is what I'm already on, which is Coreg. The problem is he offers no suggestions as to how to treat the immediate symptoms. I feel like my body is going going going all of the time. It is so uncomfortable. He says this is whats causing my shortness of breath even at rest and other stuff I feel. When I told him drugs like Xanax don't work, he said because it's and adrenaline issue, yet he offers me nothing other than the Beta Blocker to bring it down as it's supposed to counter Norepinephrine. I don't think I can go higher as my Blood pressure hangs around 100 on the 25mg 2 x per day I'm on. I can't seem to find anything on Google to help in addition to this drug. I'm not sure how I'm supposed to live like this. I feel like I'm on speed even when I try and sedate myself. My body is going while I'm half falling asleep. The graph shows alot of Orange in front and all blue in the background. The blue he says is Parasympathetic and the Orange is Sympathetic. I'm gonna go see a Psychiatrist again as not only does this feel like a constant Heart attack, but it's screwing with the rest of my body including my other emotions. I can't smile at all about anything as I'm in the constant state of "full alert". I'm crying multiple times during the day. Thank you again, Justin

Thank you all so far for the generous replies and warm welcome. My worst symptom is the Anxiety by far. My body just won't relax. I go for the coffee in the a.m., because my Anxiety is raging before I even open my eyes, but my head is not in the game. I have to wake myself up somehow. It take me almost an hour to just calm down a bit. The Anxiety goes all day and I guess I get worn out from it, so I do a second cup of coffee later in the day. For some reason, it actually calms me down a bit, almost like I have ADHD, I don't get it. On top of that, I just have a general sense of Malaise all waking hours. The off balance feeling in my head make me nauseated beyond belief. I feel like I just got off some crazy ride. But it's not a spinning vertigo, it's more like I'm swaying all over the place. Everything is off in my body including body temperature. I sweat when it's 70 degrees outside just trying to take a short walk. I would think I don't need compression stockings as my blood pressure is ok, it's just my heart rate that goes way up when I stand. Either way, I'm symptomatic even laying down. I don't know how I would get to the Mayo clinic. From what I'm reading, it looks like people that have this bad are stuck with no answers. Dr. put me on Coreg 25mg 2 x per day. Even with that in me, my resting heart rate is 90's and standing up, it still goes into the 120's. And I still feel the adrenaline shooting through my chest. This is crazy !!

Hello everyone, My name is Justin. I'm 38 y.o. and have been sick for about 2 years now. No one knew what I had for a long time. My symptoms first started after a bad car accident 2 years ago. I started with bad anxiety as my first symptom and saw several psychiatrists. Everyone was scratching their heads because drugs like Xanax were not helping me at all, even in the higher doses. I couldn't take the Antidepressants as they made me so sick. I battled to get to a therapeutic level of Lexapro, but even then, it did not help me at all. So I had to go through what I call terrible withdrawal from that drug and refused any type of similar drug since then. A few months later, I was in the ER a few times because I couldn't get my breath. IV Ativan was given in large doses, but that wouldn't help either. It sedated me, but I would still be laying there trying to catch my breath. Then the Dr. thought I was having an allergic reaction perhaps and I was given IV Benadryl and right away, my breathing came back to normal. I carried benadryl with me at all times after that and that helped alot with both the anxiety and breathing issues. Then the heart stuff started last year. I finally had a tilt table test. I didn't pass out. I screamed for them to turn off the drip when my heart rate got to 200. I felt like I was gonna die right then and there. So even though my blood pressure stayed ok, they said it was a presumptive positive. They didn't even mention the word Hyperadrenergic. I had to figure that out on my own. So, here I am now 6 months later suffering daily. My anxiety is going before I even open my eyes in the morning. I have to run for coffee to wake up as my body is going going going and I'm out of breath and very stiff all over. I'm wearing CPAP as they said I have sleep apnea now too. I'm like whats going on. I'm falling apart and so young. I can barely get out and do anything b/c I am so uncomfortable. My latest symptom is this sensation like I'm rocking on a boat. After lots of googling, it's called "Mal debarquement". I was never on a boat or a plane which is how most people get it. I don't know what to do. I have a son who is 7 years old and I can't do anything with him. I feel sick on top of the above almost 24/7. Even if I can get the anxiety under control, just walking to my mailbox tires me out. My wife is ready to leave me. She is not being supportive despite having a real diagnosis. I wasn't even hurt that bad in the car accident that precipitated all of this. Just some bumps and small cuts, but my car was totaled. I don't get what is happening to me. I seem to be getting worse and worse. Even with all of the Physical symptoms, my Dr.'s are telling me I'm just anxious. I am, but it has no cause. The anxiety is coming from nowhere and now I seem to be crying all of the time from nowhere as well. It feels real, but at the same time it feels like a symptom. It's like 2 year old crying. I'm beginning to think I have brain damage. I have seen so many Dr.'s. My MRI's are normal. I could really use some support here and ideas of how to get help... Thanks so much....... Justin