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davecom

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Everything posted by davecom

  1. Hi Lyla, It's great you have a starting point now. If you search the forums you will find tons of threads with exercise suggestions and tips. Most people start with recumbent exercise like recumbent biking and rowing. This can be paired with some light weight lifting. After gradually building that up over a period of months upright exercise can be added. This is similar to the Levine Protocol - Google Scholar it to read the gritty details of the controversial study.
  2. Thanks, I hope so. Like you, I can't imagine living the rest of my life this way. In fact, with my congenital heart defects, I'm pretty sure this would eventually kill me if it didn't eventually heal - just too much constant stress on the heart. Are they considering putting you on beta blockers since you have elevated heart rates sitting?
  3. Since I am still struggling every day I feel like it would be foolish for me to tell you what has helped - since I am no guru and haven't recovered myself. Am I significantly better than when things were at their worst - yes. I have less pain in general (knock on wood), more normal gastrointestinal function (hope I'm not jinxing everything by saying that... this has made me superstitious), and slightly lower heart rates. But when I get up I still sometimes see 130s heart rates. I still can't stand still. My hands and feet still turn purple (do yours by the way?). What has helped? Time, exercise, tons of liquids, a limited diet, following a strict routine (I walk every 2 hours for a set amount of minutes - exercise on a schedule too), and plenty of rest (I had to quit my job/career and I'm trying to start a new one from home but symptoms make it hard still). What really concerns me about your case is that you're saying you have had these ultra high heart rates while sitting down - that's alarming. I've had elevated heart rates around 100 sitting or 120 sitting in a hot shower but never anything too crazy like what I get standing. How do your doctors explain that?
  4. Thanks for the positive energy!
  5. Hey gjensen, I just wanted to write to say I can relate to a lot of your journey and can you're not alone. I also am 6'2. I also was almost 190 pounds before this started and then went down to 158. I also had tons of swallowing pain (and still do on and off). I also had extreme dry mouth. I never quite hit 180, but I was in the 150s heart rate wise. I also was put on PPIs that did a number on me (causing migraines which I never had had before - and I wonder still if contributed to the nerve damage - there have been recent studies linking them to changes in nitrous oxide and blood vessel constriction). I also developed acid reflux which I had never had before as a result of this. etc etc - the whole story every bit of it I can relate to in some way - from being quite active right before to gastrointestinal illness when it all started and never quite resolving, to being misdiagnosed initially by ****** doctors. I also lost my faith in most of medicine. But you can't beat yourself up about what happened or what continues to happen. You were put in an impossible situation with a failing body that didn't equip you with the tools to fight back. There is no way you caused it - it was almost certainly instigated by a pathogen. What that pathogen was - you might never know this many months later. It may have triggered an autoimmune response. But you have to remember that this is probably not a death sentence and things may get worse before they get better. Keep fighting. Keep us informed how you progress.
  6. There's no way it's "just" POTS. There's actually no such thing. POTS is just a syndrome that always has an underlying cause - most of the time that cause is never figured out, but we know in more than 50% of cases it's SFN (Mayo). Do they have any idea of what your small fiber neuropathy was caused by (I think you mentioned you have that in another thread)? Did you have a positive skin biopsy/sweat test? With the high sedimentation rate, abnormal C-Reactive protein, and some positive ANAs, are they considering inflammation caused by some sort of autoimmune reaction? Did you have a virus preceding the onset? A lot of POTS cases are caused by freak autoimmune reactions to viruses (according to my neuro, a genetic susceptibility to a particular pathogen, not necessarily an autoimmune disease).
  7. Hi Aeris5000 your story/history (including when getting sick) sounds very similar to mine. I don't understand why your neuro would tell you that small fibers can't grow back. I'm not going to say my neuro is better than your neuro, but he is the co-director of a major neuropathy center and insists they do... Also your POTS is almost certainly caused by the SFN, in my opinion. It would be quite a coincidence for you to happen to have both conditions... and you have gotten somewhat better - so isn't that evidence in itself that they're growing back? My neuro says that any improvement is a very good sign - evidence that you can fully or mostly recover (in other words evidence that your small fiber nerves can grow back).
  8. gjensen - that sounds awful. Sounds a little like how things were when I was at my worst, and they have gotten at least somewhat better since then, but it just sounds absolutely awful. It sounded in other threads like you have good doctors. Do they understand the severity of the situation? You need to make it perfectly clear to them if not, while still being polite. Unfortunately w/ POTS (if that is what you have) inactivity can be part of a downward spiral. Are they considering putting you on some kind of med so you can at least start getting into some sort of walking/exercise routine or some physical therapy? It must seem pretty dire right now. Without knowing what your underlying medical condition is, it's hard to say if your situation is similar to what happened to me - but I think you should have hope that things can get better.
  9. I have the same patterns at you w/ POTS. Have you formally been diagnosed with an autonomic disorder/POTS? My suggestion to you would be to look into w/ an autonomic doctor in your area - and also to get a glucose tolerance test from your primary. Good luck wishing you the best - definitely hard to deal w/ that w/ college.
  10. There are some long threads on success/recovery stories if you search the forum. I agree it's good for new threads to come up every once in a while to remind everyone.
  11. I've talked to people who claim to have made a "majority recovery" and my doctor who sees many patients with POTS caused by neuropathy (which is apparently around 50% of cases) claims a lot of people do make full recoveries over a 2-5 year period. He insists that it's very slow - takes a lot of time for small fiber nerves to regenerate. You have to remember that someone who makes a full recovery is unlikely to come back to the board to remember their nightmare... at least that's what I tell myself to explain why we hear from so few of them. The studies claim there is a significant portion of patients who make a full recovery too for what it's worth.
  12. Yes, I've had several different ANAs... All negative in my case, however of course you're right - a positive ANA is not definitive of anything on its own.
  13. Was it a generalized ANA or for a specific nuclear antibody? Are they going to diagnose you with a specific autoimmune condition?
  14. The goal of all the typical recommendations - exercise, salt, fluids will improve blood flow the brain by volume expansion and improved heart contraction strength.
  15. Even if it came back down, that's quite a shock to the system if that was a real reading and if that's happening regularly. Was it after eating like a 7-11 slurpee
  16. If you quite suddenly get sick out of nowhere and all known systemic diseases are ruled out, it's presumed a pathogen (bacteria, virus, fungi) is the cause. This makes sense since pathogens are the cause of most illness. Certain pathogens are also known to be triggers for system conditions.
  17. 384 is very high. I wonder if that was not an inaccurate result. Either way, low carb diets tend to help POTS by reducing the amount of blood flow needed to the gut.
  18. Yeah that is a high for a purely fasting glucose. I think you may want to get those workups that your neurologist suggested. It sounds like he's on top of things. How refreshing! PS You're saying Duke hospital is better than UNC in general? I've found the same thing with big university medical centers. The private university hospitals are always better.
  19. He told me it's really about how much you can tolerate digestively (tends to cause acid production for people). He also, (smartly in my opinion) cautions against starting too many supplements at the same time, since you don't know what's doing what then. The studies done were with 600 mg of intravenous s-lipoid-acid daily. My understanding is that the r-form is more bioavailable. I started with 100 mg/day and recently went up to 200 mg/day. He told me to feel free to go even higher than that if I'd like after trying out the 200 mg for a while. There are literally dozens of possible causes of small fiber neuropathy. However, by far the most common cause is diabetes or pre-diabetes. Getting a glucose tolerance test is not a bad idea. Mine was within the normal range, but just barely. Having glucose spikes and a high carbohydrate diet is certainly not helpful for POTS or SFN. I have also run into several people who have POTS caused by sjogren's syndrome (an autoimmune disease) who were negative by blood test for sjogren's. The sjogren's antibody blood tests are only 70% sensitive. I ended up getting the lip biopsy for sjogren's (pretty painful but supposed to be fairly definitive) which was negative in my case. The first sign of sjogren's can be small fiber neuropathy. If you want to get the sjogren's lip biopsy it might be quite a battle to convince a doctor to do it for you. Anyway, I'd keep looking if I were you. I feel like I'm at a similar stage to you (confirmed SFN, POTS, with no positive blood tests). I've run out of tests to get for now as far as underlying causes go (since I have no evidence to justify any others), so I'm starting to be more hopeful that in my case it was just a freak one time reaction to a virus as my neurologist, and some other doctors believe. I'm sorry you're getting worse. Are you doing an exercise program, tons of fluids, salt - all the standard stuff?
  20. I don't think it's really that strange. People with POTS are unlikely to be majorly active outdoors and are often on restricted diets. Therefore the main sources of vitamin D (sunshine, food) maybe out of whack.
  21. Hi gjensen, Sorry about your diagnosis, although it's not too surprising if you have POTS, since it's the cause of 50%+ of cases according to Mayo's studies. There is definitely hope. SFN can reverse if the underlying cause is identified and treated. In some cases of POTS, it is thought that a freak autoimmune reaction to a virus led to the small fiber autonomic nerve damage. That is what is thought to have happened in my case. Typically, according to my neurologist, who is an autonomic neuropathy specialist, the nerves can regenerate over a 2-5 year period if there is no underlying other cause (i.e. no long term autoimmune disease, diabetes, etc). There are supplements that can be helpful for peripheral/small fiber neuropathy. I'm taking r-lipoid-acid under my doctor's guidance. We're also going to be adding l-carnitine into the mix. If you do some Googling for small fiber neuropathy supplements you should be able to find more information. There have also been some studies done in Europe. Kind regards, David
  22. Hey Jon, Could it have been an additive in the supplement that you were taking that made you sick? Perhaps you could try another brand? Also if you were supplementing with D3, you could try D2. It's not as effective since the body needs to convert it into D3, but in your case it might be worth a look. Of course there's also foods that are vitamin D fortified that you can buy. Good luck!
  23. My understanding based on reading some articles is that 30 D3 is what the lab considers "normal", and 50 what vitamin D enthusiasts consider normal? Who told you 80 was normal? I was borderline when I was at my sickest when I first got sick a year ago in the mid 20s - I've been supplementing with 2600 IU a day (D3 + multivitamin has some D) and now I'm in the low 40s.
  24. Recumbent biking, light weight lifting, and rowing are pretty commonly recommended POTS exercises.
  25. I have horrible acid too from nerve damage/POTS. It's actually my worst symptom. Similar exercise has helped strengthen my heart too to help me cope. I'm going for an endoscopy in January for the same thing... my bet is they won't find anything, but ya know might as well. You may want them to test for H. Pyloori and you may also want to get the acid testing in your esophagus (they leave a little device there for a couple days), I'm getting that.
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