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DadOf2

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Everything posted by DadOf2

  1. This Dr. gets results that I'm using. He showed me before and after ANSAR tests on many patients he has treated. It shows graphs similar to mine and then after 6 mos. or longer of treatment, the ANS returns to normal. In simple terms, Autonomic Nervous System restored to baseline prior to onset of illness. These patients all had infections, but regardless, it was the result of toxins that the body couldn't eliminate causing the ANS disorders. By building back up the immune system, the body is able to rid these toxins on it's own, and in many cases, medications are used as adjunctive therapy when the offending underlying disorder is known. Hope that helps some of you, Dustin P.S. I added in the l-methionine just yesterday and today I am feeling lots better. This may have been one of the missing components in my treatment. L-methionine is needed to complete the methylation process. I just hope it stays. I was able to leave the house today and run errands without any problem and my heart rate stayed below 100 while up and about. hmmmmmmmmmmmm !!!
  2. Hello everyone, Sorry so long to respond. I have been feeling terrible since I posted the Ansar testing. I had to start out very low on the B12 and Folate as it was making my anxiety go nuts. I am happy to say that I am now up to 28,00mg or 28000mcg of B12 daily and I guess I'm making my way to Methylation. I also was put on Methionine recently to help the process. This Dr. did alot of testing of my blood and it turns out, I'm testing positive for Lyme disease. Specifically Babesia Duncani and Bartonella. The Lyme itself doesn't test positive, but my Dr. is sure I have it given my all of my Neuro symptoms. I started on some antibiotics and having bad reactions to them. The Dr. says that I'm still not fully Methylated and thats why my body is having trouble detoxing from the die off. He says I'm full of toxins. I am however now able to get out of the house a bit. Most of what I feel is in my head (like I'm on a boat bopping up and down while still, headaches galore, head pain all over my scalp, crying jags, tremors, etc.) My heart rate is stabilizing a bit here and there. It dropped to 44 the other night while going to bed, not sure what that was about, but I can stand and have it around 100 now. This is while on the Propanolol I've been on for months now. He will switch me to Acebutolol, which is central acting, where the Propanolol is not. Low dose naltrexone is next on the list to get my endorphins going, which is supposed to boost up my immune system. This guy really seems to know his stuff. Unfortunately, I can't post his name on here. He doesn't want the publicity, but I am happy to share the plan with you guys. Right now, I'm taking tons of Vitamins and Amino acids. Here is the list: Methyl B12 Folate L-taurine Activated Quercetin l-methionine N-acetyl cysteine tumeric extract b complex b-6 p-5-p sarsaparilla root probiotic magnesium co q10 mega dose vit. calcium More to be added on my next visit on 2/11. Will keep you all updated. This Dr. thinks everyone with Dysautonomia has an underlying infection whether it be Lyme, Mold, Heavy metals, etc. He has a 3 mos. wait for new patients and takes insurance (Amazing). Again, I'm happy to share the treatment plan with all of you. Dustin
  3. Just had this done a little over a week or so ago. The Orange shows my Sympathetic Activity and the Blue shows my Parasympathetic activity. I'm referring to the graph on the bottom right. As you can see, I'm in Sympathetic Overdrive. This is what I've been trying to tell so many Dr.'s for so long. Well now that this is established, the Dr. that did this test on me is trying to get my situated with Vitamins, Amino Acids, etc. He says I am undermethylated with high levels of Histamine which is why Benadryl helps me. It will take time, but this Dr. specializes in restoring Autonomic Balance. We are starting with B12 and Folate in high doses which I am having trouble taking as they make my anxiety go nuts, but my levels were low and until they get to normal range, I'm told this is what I have to go through. Just thought I'd share this with everyone. BTW, this was taken with 80mg extended release Propanolol on board. The Dr. said we probably wouldn't have seen much blue had I not had the medication in me. Dustin
  4. I was reading that Lecithin or Innositol both help for anxiety, but specifically, Acetylcholine is what counteracts Adrenaline. Since Lecithin is a supplement that turns into Acetylcholine, I was thinking this might help with my constant state of Anxiety. This Adrenaline stuff would probably account for the fact that Benzos such as Xanax and Klonopin don't help much to reduce my anxiety. Thanks for all your help so far, Dustin
  5. Interesting Replies and I thank each and everyone of you. Just a few more notes or should I say symptoms. I have noticed that also when I eat, sometimes, symptoms seem to exacerbate. I have been battling terrible headaches since all of this started. I wouldn't call them migraines, but then again, I'm not sure what they feel like. These headaches usually start over the notches in the back of the skull. I get pressure sensations all over the head too. My balance is also off. Not like I'm going to fall, but it feels like I'm on a boat in rocky waters where I'm bouncing around. This symptoms is always there but it varies in intensity. The weird thing is that standing and walking around sometimes gets rid of symptoms, yet many symptoms can get worse while just sitting. I don't think I have the pooling type of POTS. It certainly does feel like the Adrenaline type, maybe this is why my blood pressure holds steady. In fact, many time my lower legs, ankles, and feet feel cool. Someone sent me a private message and said I should get tested for Lyme. Does anyone know anything about this ? Thanks again, Dustin
  6. I have been hospitalized 4 times in the last two months. 2 times to Medicine and 2 times now to a Psych Ward. The medical admissions were for further workup as I was having low grade fevers and small white counts, like 15K, but I just complained of feeling ill. I was tested for everything and everything comes back negative. Still being told it's POTS and Dysautonomia. My Anxiety is now off the charts and when I stand up or walk, it goes away for the most part, but when I sit down, it hits me so strong. The shortness of breath is acting similar. When I sit down, I start gasping for air, but when I stand up, it goes away. I can't live like this and everyone thinks I'm crazy and that this is all Psychosomatic. My heart rate is ranging from the 70's sitting to 130 standing. I can't stand for long or I get short of breath too, but the worn out kind, not like the kind I'm getting when I'm sitting. My blood pressure barely moves when going from sitting to standing, which is a bit different then when I had my Tilt Table test. Blood pressure is like 110's/70's. Here is yet another weird symptom, when I change positions, I feel like I am going to cry. I can feel something in the front part of my head that goes with crying, but really nothing to cry about. I was started on Effexor, but had to stop on day 4 as it made me deathly sick, something else, no one could believe. I tried Cymbalta, same thing. Klonopin and Xanax just make me yawn and feel tired. I feel an underlying feeling of being sick with this whole thing. I'm on a Beta Blocker (Propanolol) other than the Benzos. Benadryl sometimes gives me relief over the Benzos and this doesn't make any sense either. Can someone shed some light as to what is going on with me. Prior to the onset of this I was working as an account supervisor, working 40 hours per week. I never had any problems with either Anxiety or depression. Amazingly, I crash at 8pm and am sleeping almost 12 hours. I am fatigued as can be after sleeping this long, but only can't wait until 8pm again, as the agony of my day is just ridiculous. I can't do anything with my kids and this is crushing me. My wife is ready to divorce me. My life has been turned upside down. All of this feels like it's neurological to me, but I can't find a Dr. that will give any of the above any Merritt. Symptoms are so bad that I can't even sit and enjoy a simple TV program. Again, I am told this is POTS and Dysautonomia. Thanks in advance, Dustin
  7. I'm so sorry to ask these questions as I could just google them, but I can't find the answers that way. I didn't put this in my last post as I thought maybe I was coming down with something, but apparently I am not. I have had a low grade fever starting at around 3pm or so now for almost 2 weeks. My temp goes to about 99.5 or so and I feel a scratchy throat, but then in a few hours, it just goes away. I have not been myself as of lately. Many of the POTS symptoms are now occurring while I'm seated and just worsen when I stand up. For example, out of nowhere, I am having anxiety all day long while sitting or lying down, if I stand up it just gets worse. I've tried a Xanax a few times and it does nothing. This Vertigo I'm having is also happening while laying down or sitting and when I stand up it goes away. It seems like some things get worse when standing or walking and some things are worse when I am laying down or just seated. Am I missing something ? My Dr. doesn't know what to make of all of this. Dustin
  8. Thank you for the quick replies everyone. I am reading more and more on this stuff now everyday. I really think there is more going on with me than the diagnosis I have been given. I have a sense of being sick now, like general malaise. I've been running low grade fevers in the late afternoon now, like 99.5 or so. Then I get a tickle in my throat. I will start a new topic with these symptoms. Dustin
  9. Thank you to all of you that welcomed me here. I had a death in the family and have been away from the computer for a while. I tell you, it never ends as I get older. Ok, so please tell me what you make of this. I am finding all sorts of stuff happening to me now, but the latest is that I when I stand up, I can instantly start to feel depressed. I'm not ecstatic to start with, but I can be sitting just fine, usually with my legs elevated and then I go to get up and my HR goes up, but I get this overwhelming feeling of sadness. I don't cry, but I get pretty close. I sit back down and then it goes away once I get the legs back to an elevated position. I'm also experiencing Vertigo in the form of Dysequilibrium, this seems to come and go on it's own. If I get up and walk around it seems to be better than if I'm just sitting. What is all of this ? I know I'm not crazy, not yet anyway, but this stuff is driving me crazy. Just kidding here folks, but I feel like if I got my legs amputated, I might be better off. Dustin
  10. Hey everyone, My name is Dustin. I am 45 years old and the father of two kids 9 and 10 years old. I first developed POTS about 6 months ago and it has been so severe that I had to leave my job of 23 years and go on disability. As time has passed, I have developed some really strange symptoms that my Neuro doc. is calling Dysautonomia, however when I google them I can't find them as symptoms of Dysautonomia. First let me tell you that I have been put on Klonopin and Xanax as my anxiety flares out of nowhere. Even with these meds on board, my anxiety doesn't always settle down and I will be yawning. I'm on Beta blockers, but they don't seem to do much for the POTS. I try and walk daily and I bought one of those pulse watches. My blood pressure doesn't drop when I stand up, and when I walk, my heart rate comes down from like 140 to sometimes 100 or so. But as soon as I stop walking and just stand, up the heart rate goes. Lately, I've been getting tremors in my arms, especially when I bring food to my mouth, but I now am getting them in my head. I don't think these are parkinson like as they are so uncomfortable. I get this strange feeling in my head and then it starts to noticeably shake. This happens now when I'm sitting, standing, and even in my sleep, it wake me up. My latest symptom is uncontrollable crying, which I can feel in the front of my head when it comes on and I find myself crying at the drop of a hat. If someone says cry, then I ball. It's actually hard not to cry. This is not appropriate crying and I know this. It's like total despair crying and I dont' understand it. I'm being told that I am depressed and I am, but not to the extent of the crying I am doing. Has anyone ever heard of this kind of stuff ? I am going to a psychiatrist tomorrow, but I think the Neurologist is seriously missing something here. My MRI is clean and I have had numerous CT scans of the head for head pressure and pain that does not respond to any pain medications I have yet to find. This is turning my life upside down and ruining my family life. The crying is ruining these things and not the other symptoms even though they are not fun either. Glad to have found this board. Dustin
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