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toomanyproblems

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  1. To be clear, I had antibody testing to see if I was getting any passive immunity from the subcutaneous immunoglobulin infusions I get weekly. Since the company, Hizentra, refuses to tell me or my Dr's office when the donor blood used to prepare the concentrated Ig I get was originally collected, and where, or if they've tested it for covid antibodies, I took it upon myself to check to see if there were covid antibodies in there showing up in my own system. Every gram of Ig is concentrated from the blood donations of thousands of people and I get 14 grams weekly. This far into the pandemic it would be reasonable to assume a significant portion of the blood donating population would have antibodies from either having covid or being vaccinated if the blood had been collected in the last year or sooner. However, these Ig concentrates have a very long expiration date of around two years when I get them so the product obviously can last a long time once prepared. Because of this I actually have no idea whether the donated blood used to make the concentrated Ig I get was collected within a time frame to reasonably assume I might get some passive immunity. This is actually very important to me since I'm immunocompromised and may not be able to generate my own response from vaccination. The semiquantitative test I had was negative so I guess not yet. (I don't think my own response to vaccination can be reliably measured since I continually get Ig from external sources but in any case, that was negative also.) The quality of these possible passive antibodies to neutralize the actual virus is another question. So my own situation is complex and so is the testing and I shouldn't have mentioned the antibody testing at all. Thank you to MomtoGuiliana for the great article helpful in explaining some of the concepts of immunity and testing. But it's actually a *very* complex and constantly evolving field. Speaking as someone with higher education in the field in both research and clinical laboratory testing, who has developed these types of immunology tests in academic and clinical settings, and generated monoclonal and polyclonal antibodies in the lab to whole substances (like a whole viral particle) and various individual antigens (the immunologically stimulating portions of something), finding the simple answers to complex questions around these issues that people need right now is not possible. I myself struggle with finding and evaluating studies and facts I can trust. I understand this is very frustrating to people who just want a clear answer when there are so many different people out there saying so many different, often conflicting things. People are going to listen to who they want to listen to but a reasonable idea might be to look for sources that are drawing from a significant consensus of those involved in the current scientific understanding and practice on the topic. I look to this forum to provide information from these types of sources as I know it strives to do. Thank you so very much for your efforts.
  2. I also have almost a complete lack of thirst and have for my entire life. I don't know if that contributed to my POTS but I have EDS and other things that commonly go along with POTS and I don't think chronic dehydration caused those FWIW. I really, really struggle to try to stay properly hydrated. It's just exhausting to have to force myself to drink all the time when I have no thirst. When can manage it, I pretty much pee it right off even with salt or florinef and I'm back to where I started. IV fluids only help if it's lactated ringers given over several hours. That can stick with me longer but I rarely see much difference in symptoms and HR. I don't have a port and frequent IVs are not a sustainable solution for me. There is definitely a screw up somewhere in the internal pathways for the control of my fluid balance. I wish someone could figure it out. It may not be every POTS patient's magic bullet but it may be mine if they could figure out what in that pathway is broken. I do understand that keeping hydrated is very important for me. I might not meet the goals they give us for daily fluid intake but I do the best I can considering how hard it is for me.
  3. I got my third Moderna a few weeks ago. I had a little bit of a sore arm but nothing much else. Actually not even as bad as the first two. I'd rather have gotten Pfizer because I think switching is more effective but another Moderna was my only choice at the time. I'm immunosuppressed so I qualified early, but, as with the first set that I got as soon as possible, it was not long before it would've been widely available to me anyway. I really don't know if I'm responding. I don't have anti-covid antibodies (although that's not the absolute indicator of immunity) so I'll just keep taking boosters when they're offered. I still go about my life wearing masks inside and such as if I'm unvaccinated.
  4. IDK what to tell you but I until recently lived on a farm and I'd been due for a tetanus booster for quite a while. I only got one when I had an injury that warranted it. FWIW I didn't have any reaction I can remember. Maybe that's an option if you're really worried? Clostridium tetani like all the Clostridium species is an anaerobe meaning it can't grow in an environment with oxygen. However the spores can which is why you can get it in the normal environment. So once the spores have gotten into a skin break, it normally takes a fairly deep wound for it to be able to grow well after that without oxygen getting to it. As in a superficial scratch would be hard for it to grow in. I'm pretty discriminating about what vaccines I get and weigh the risks vs benefit.
  5. Well, if you want to know asap about the sarcoidodosis you have the option of ordering a blood test yourself through request a test (only use the direct request a test site) and find a place near you. You find lab near you, go in, they draw the blood, and notify you your result is ready then you go to the web site and get it. The standard blood test for sarcoidosis is Angiotensin Converting Enzyme. It only costs $49. It's the exact same labs as your drs use. I had a granuloma in my spleen at the same a lot of this POTS mess started so I had one ordered by a doc but if I had an unresponsive doc I'd get that test done myself in a heartbeat. You can choose to give the results to your dr or not.
  6. Hi, I got my third (called additional) Moderna vaccine yesterday afternoon due to immunosuppression. Only Pfizer is approved for "booster" third vaccines as of yet for those 65 or older. But Moderna is approved under certain conditions if your original two vaccines were Moderna so I got mine because of being immunosuppressed. I found the nomenclature confusing. IMO they should just call all Pfizer and Moderna a third vaccine with whatever restrictions. Anyway, slightly sore arm today. Nothing else. About the same as the first vaccine. Everything went smoothly. No problems at all. I'll take it easy today out of precaution but I don't feel like I need to. So happy to have the extra protection (if it took) especially because of the less than optimal vaccine rates around here.
  7. Here's some information from a scientific literature review of recent literature from good scientific journals that I did this morning. These numbers may change over time somewhat but it's certainly not going to become even remotely close for blood clots from covid vaccines vs blood clots from covid. ******************************** Blood clots and Covid vaccines: Bottom line: *Vaccine associated clots = approximately 1 in 100,000 (0.001%) Vs *Covid associated clots = approximately 1 in 4.5 (22%) or in ICU patients 1 in 2.3 patients (43%) More info: Vaccines can very rarely produce what is called vaccine-induced immune thrombotic thrombocytopenia or (VITT). Preliminary studies found this rare reaction may be the same as or similar to a rare complication (less than 5% or 1 in 20) of heparin therapy by interaction with platelet factor 4 (PF4) called heparin induced thrombocytopenia (HIT). Estimates of VITT from all vaccines, with Astra Zenica’s being the highest reported so far, were roughly 1 in 100,000 or 0.001% after vaccination of over 400 million people worldwide. In a review article published in May 2021 of 12 scientific articles containing 1083 patients included for meta-analysis. The prevalence of thrombosis was 22 % (95 % CI 0.08–0.40) in COVID-19 patients and increased to 43 % (95 % CI 0.29–0.65) after admission to the intensive care unit (ICU) For reference, according to the NIH, in the general population blood clots occur at a rate of about 1 per 10,000 per year before the fourth decade of life, rising rapidly as one ages to approaching 5–6 per 1,000 per year by age 80. References: Thrombotic thrombocytopenia associated with COVID-19 infection or vaccination: Possible paths to platelet factor 4 autoimmunity, Michel Goldman1,* and Cédric Hermans2, PLoS Med. 2021 May; 18(5): e1003648.Published online 2021 May 24 Prevalence and risk factors of thrombotic events on patients with COVID-19: a systematic review and meta‐analysis, Xiaoming Xiong, Jianhua Chi & Qinglei Gao Thrombosis Journal volume 19, Article number: 32 (2021) SARS-CoV-2 Vaccine–Induced Immune Thrombotic Thrombocytopenia Douglas B. Cines, M.D., and James B. Bussel, M.D. June 10, 2021 N Engl J Med 2021; 384:2254-2256 *These figures were mostly generated before the Delta variant became the prevalent strain, which is considered to be more virulent and could have an even higher incidence of clots associated, whereas the vaccines have not changed, so the 400 million doses the late spring data uses is certainly a large sample unlikely to change those percentages of 1 in 100,000 significantly. Note that as of the end of September 2021 over 6 trillion doses have been administered worldwide, so while there is not data yet from a sample size of 6 trillion, 400,000,000 is a much larger sample than is used for most analyses of any sort.
  8. If I were you and you decide to go back, after one stick and they don't get it, ask for someone else. It sounds like they had someone either not very good at drawing blood, or very inexperienced since it sounds like it's never been a problem before. Or better yet, call ahead and make sure you have the best person draw you because of the problems you had. People do that all the time for difficult sticks.
  9. As someone who worked in a clinical lab for many years and drew blood on the hospital floor as part of those jobs, the amount of blood they draw is very, very minimal wrt your total blood volume. There are many reasons you might have had the problems you did with the blood draw. Many people get stressed when it doesn't go smoothly and many get stressed even when it does. But the amount of blood even in many vials is not nearly as much as it looks like. Compared even to just donating a unit of blood, the amount of blood taken in a blood draw is very small and shouldn't cause any problems even in your situation. I do have low blood volume and polycythemia that is almost certainly a relative polycythemia (what appears to be too many red blood cells due to a low plasma volume). Taking a unit of blood off to lower the red cell count has even been tried and it did not affect me as you describe. BUT I do have what you describe due to overstimulation or stress in a ridiculous number of normal situations. I think some of the responders here are describing this problem in many situations, some common, and some specific to the individual for various reasons. In short, most people do not like to have blood drawn and it stresses many people out even when things go smoothly but blood loss is not an issue. I mean, maybe if you were a chihuahua...Calculating how much blood can safely be drawn wrt total blood volume is done in small animals and babies but is not an issue in adults even though it can look like a lot of blood in the tubes.
  10. I have hyper POTS and I got the first Moderna shot Feb 5th and the second March 3rd. I had a sore arm for the first one but didn't notice much else. The second one my arm swelled a bit more and I might've felt a little worse than normal for a day but that was it. Since no one around me is vaccinated I'm glad I got it early. I'll get a booster the first chance I get. But I have no way of knowing how well I responded since I'm immunosuppressed so I still wear a well fitted N95 mask inside when I go out and will continue to do so until I feel like it's safe.
  11. Pistol -- I'm so sorry your family went through all this. Please take extra good care of yourself.
  12. The blood sugar increase you see makes sense with high adrenaline since that stimulates your adrenal glands to produce more cortisol (your natural steroid), which in turn can increase your blood sugar. Since I have Addison's and all the steroid in my body comes from oral ingestion or injection (when I'm not absorbing properly due to gastroparesis) I can control how much is in my body at any given time. So although the increased adrenaline causes increased cortisol production causes increases blood glucose thing is an explanation, that mechanism isn't what's causing the high blood glucoses in me. It's interesting when I'm having a problem proposed to be linked to increased cortisol from stimulation of the adrenal glands because I know that's not the cause for me since I control those steroid levels myself.
  13. I get these really bad at times. It goes from jerks to rarely whole body convulsions. I was doing some reading about this a few years ago when I had it bad but I didn't find out much except antihistamines like Benadryl usually make them worse. That was a huge find for me. Nine times out of 10 Benadryl will cause it with me to some extent. Now I avoid it if possible. I have no idea what the mechanism for this is but then I've mostly stopped trying to figure out why things like this just come and happen to me seemingly unrelated to what's going on to my body externally. I'm very sorry this is happening to you. I hate the jerking worse than pain. It's like electrical current builds up in my muscles and then releases with a jerk. I hate the feeling of the build up worse than the jerk. It's like having an EMG all night long. And sometimes during the day.
  14. I have Addison's and it did cause low blood sugars before I was on steroid replacement, like in the 40s at any time, and often, but not only post prandially. Hypoglycemia certainly is a symptom but one endocrinologist told me it actually wasn't a common one. Also, I *never* had high glucoses at that time pre-steroid replacement, only normal or low. Addison's might be a rule out but I would think it unusual in this cause especially since both the reactive hypoglycemia and hyperglycemia is a now being discovered as a POTS thing. Similar to what the OP is describing. That "guarding your carbs" thing is very useful. Fat, fiber or protein before carbs keeps a rush of insulin from hitting your system because of the carbs going straight into your system basically "undiluted." Even complex carbohydrates are better than simple ones because it takes longer for them to break down and get into your blood stream.
  15. I should have noted that hypoglycemia accompanying glucose intolerance is known in POTS patients, but not well studied yet either. It's discussed in the video I posted above.
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