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Posts posted by Dale

  1. My blood pressure has been getting as high as 190 over 164 and as low as 86 over 50 over the course of a few hours it goes real high then real low. I'm on a beta blocker shouldnt it be preventing this from happpening? And am I at risk with numbers like that? Also ive been expeirencing some of the worst palpations Ive ever had and they are occuring at night time when im laying in bed. They seem to be different then my usual palpations my heart actually stops beating for a second or two and then it starts jumping out of my chest and last for up to 5 minutes. Its scary it feels like its going to burst or tear or something. If I sit up it goes away and starts again when I lay back down. I had a renin plasma test done recently and it indicating renovascular hypertension but Im trying not to get worked up over it because it was just a simple blood test and just an indication. Im seeing my cardio in a few weeks to have it looked into. The scary thing is im so used to having severe chest pain and palpations that if I actually would have a heart attack I would probably just ignore it and think its relating to pots. How do you tell the difference between the symptoms of pots and an emergency situation? And how do I get my blood pressure to stay at least somewhat in a reasonable range?

  2. Sorry it took so long for me to respond I've been really feeling under the weather to say the least. Dr Stewart did test me for lyme it showed positive antibodies but the bands are still pending. He is not my dr I just participated in some of his research so he wont discuss anything with me. He just sends his findings to my primary care physican who hasnt received the rest of my labs yet which is a joke anyway because he knows nothing about POTS or CFS he couldnt even interpit the letter from dr Stewart and to make matters worse hes one of many doctors who think that when you get lyme disease it usually clears up within a month or two which is why you have to pay over a thousand dollars to see a lyme specalist because insurance companies wont cover them because they dont believe in chronic lyme infections. all I know is that lyme disease hides very well in the human body and most people that have it actually test negative. it is usually a clinical diagnosis. I also know that it causes dysautonomia along with many other disorders.

    I had an appointment today with my dr who tryed convincing me that pots is an anxiety disorder so I wont be seeing him anymore. I dont have money to see a lyme spealist but I am seeing dr goodkin in philly on the 31st. Hes a pots specialist and I will discuss the issue with him and hopefully he can shed some light on the better because im just as confused as many of you. Ill post an update after my appoint in philly.

  3. Thank you all for your support! If this is the cause of my problems i'll do whatever it takes to make it public knowledge even if I have to contact my local news station. More research needs done reguarding lyme and dysautonomia. My neighbor was diagnosed with all kinds of stuff like chronic fatigue fibromylagia he had brain lesions...His dr said it was all comming from either lyme disease malaria or some sort of parasite infection it didnt matter which one because the treatment is pretty much the same. He even treats people when their labs are negative based on history and symptoms plus he runs a very significant lab work up which provides evidence and indicators of infection. I hope this helps us. Most doctors will test you for lyme but if its negative they'll dismiss it completely oblivious to the fact that most people that have it do test negative untill sometimes later on in life when you build enough antibodies.They just dont know what their looking for. You have to find a specialist. All I know is once it breaks the blood brain barrier its literally impossible to find. It hides very well in your body while damaging everything especially the central nervous system! I will get the name of his doctor and post it on here soon for those of you who maybe interested. K I wish all of you the best and your all in my prayers! Some day we will over come this and be healthy again! Never give up hope!!!!

  4. I know about the hepatitis C because my neighbors doctor is one of the doctors doing the trial of alinia for hepatitis C he found that its not only curing hepatitis C but its helping aids patients improve there liver function and now its curing lyme disease and chronic parasite infections. The only bad part about it is hes not accepting new patients so I need to try to find a doctor who either knows how to treat lyme disease or try to convince my doctor to put me on the 3 meds that cured my neighbor. When I first got sick I suspected lyme disease but I had a negative lyme test done so I ruled it out. Now im reading about it online and most people do test negative for it at first and it sometimes shows up later and doctors are supposed to use a clinical evaluation to diagnose it based on symptoms and history instead of lab results due to the high amount of false negatives. Their so quick to rule out lyme disease and give someone a wastebasket diagnosis like chronic fatigue syndrome. I just hope this works for me because im sick and tired of being sick and tired!

  5. I just got some of my labs back from dr Stewart and I tested positive for lyme disease I'm calling my dr for an appointment first thing in the morning. The funny part is I could have swore that I've been tested for lyme disease before and it was negative.And whats even more funny is my neighbor who just happens to live right next door to me got sick in 2001, the same year that I did when he was in Florida which is where I lived and where I got sick and diagnosed with chronic fatigue syndrome. Now we live in Pennsylvania and are neighbors. Anyway hes been sick with all the same symptoms as me and finally he found a doctor who treated him with alinia (NITAZOXANIDE). Which is a medication that was primaraly used to treat stomach problems but now its been found to cure Hepatitis C. He was mixing that with doxycycline and taking malaria medication(through shots) for the last two months and he swears he is 100 percent completely cured. He told me that his dr said that alot of his patients have a diagnosis of dysautonomia and its caused by either a virus or bacteria. It breaks the blood brain barrier. Hes been trying to convince me that I have lyme disease since I met him but I wouldnt listen to him.Wow This is crazy. Oh my other blood test is indicating Renovascular hypertension. Anyone know what that is? The test was Renin activity plasma which was out of range (high.)

  6. Dale -

    Sorry to hear all this. :)

    I recently went on a Beta Blocker and it probably helps me 40%, in combination with other meds probably 60%.

    I take Propranonal...it's generic and even without insurance it's cheap. I think CostCo has a 30-day supply for around $10. You may want to go to a health clinic in your area, show them your POTS diagnosis, explain what helped you (Beta Blocker + the other I can't spell right now) and call around for a 'cheap generic.' These meds have been on the market for decades, my former Cardio told me, so the generics are decent.

    Sometimes there's assistance for prescriptions too so don't be shy about calling for help...we NEED national Insurance coverage, it's so unfair, so please do what you can to help yourself. 50% better on a couple of medications is an excellent improvement, at least it was for me.

    Propranonal is what I was on. I didnt even know that CostCo offered prescriptions without insurance coverage so thanx!

  7. My name is Dale and I was recently diagnosed with POTS by Dr. Julian Stewart at the center for hypotension in New York. I participated in his CFS/POTS study because I was diagnosed with Chronic Fatigue Syndrome when I was 19 at The Mayo Clinic flollowing a one year Chronic EBV infection.I'll be 26 this year. He said I had some very unusual findings and some of the most peculiar data seen so far in such patients. I have a normal BMI but appear thin. During H.U.T. I had a 30 percent reduction of cerebral blood flow to my brain which was associated with a large degree of hypocapnia. Hr increased to over 130bmp. Heart rate variability was abnormal with increased low frequency peaks suggesting sympathhetic activation even supine.Blood pressure variability was also increased suggesting accentuated supine sympathetic baroreflex. Arm blood flows were high but leg blood flows measured by venous occlusion plethysmography were reduced and I may have the lowest blood pressure in my legs that hes ever seen. I appeared vasoconscricted. During my initial screening tilt blood pressure increased markedly to 160/94. Dr. Stewart informed me that all of this is consistent with a hyperadrenic form of POTS.I appeared pale.Extremities were cool or cold to touch. A measurement of peripheral resistance showed valsalva maneuver to be increased. Cutaneous blood flow was greatly reduced at rest with local heating which can result from adrenergic excess. Please note that sympathetic activity usually contributes substantially to resting vascular tone which is increased here.However patients with spinal cord transsection may have increased tonic vasoconstriction because of humoral forms of compensation. With 70 degree tilt there was progressive orthostatic hypertension with a large increase of tachycardia.Total peripheral resistance was increased as well. He sent off blood work which I have not recieved as of yet. He said the DAXOR blood volume assessment should be made a matter of medical necessity for me ( Dont have insurance) I underwent microdialysis with laser Doppler flowmnetry which revealed some very interesting data. Typically all data are normalized against an intradermal vasodilator response to sodium nitroprusside which was actually quite low with me indicating either intrinsic abnormality of the cGMP mechanisms within the vascular smooth muscle or a reduction in the number of my blood vessels. Such findings are unusual have never been observed in POTS or CFS subjects before. I had very poor thermal and acetylcholine responses in general which could relate to excessive norepinephrine. Nevertheless because of the relation of low flow to oxidative stress he elected to infuse me with large intravenous doses of ascorbic acid including small saline infusions. It appeared that vitiam C increased my resting blood pressure but worsened all other responses of cerebral blood flow and to tilt.This is highly unusual. I just had an MRS scan of my brain performed by Dr. Dikoma Shungu and it showed elevated levels of lactate acid. Anyone have any insight on any of this? I am unable to find a dysautonomia specialist in my area so I dont even know what medications I should be on and I Feel very sick. My symptoms include insomia,blurred vision,disabilitating fatigue,dizzines,black out spells,severe neck and back pain,stomach pain,tingiling and burning all over,palpations,post external malaise,muscle and joint pain,orthostatic intolerence,unrefreshing sleep,memory loss,nausea,weight loss,hot flashes,heat and cold intolerance, panic attacks,shortness of breath,loss of homeostasis,chest pain,lightheadedness, excessive/decreased sweating,numbness,muscle loss,weakness,poor body tempature control,flu symptoms,excessive thirst, ringing in my ears,alcohol intolerance and light and noise sometimes bother me more so then they should. I have gotten to the point were I'm pretty much just house bound and unable to work. I feel like I've had a really bad case of the flu for seven years and I'm starting to sink into depression. I was on a beta blocker and fludrocortisone not too long ago and my symptoms improved by at least 50 percent then I lost my insurance so I have just been taking vitiams and trying to stay hydrated.

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