1. Today
  2. I totally see what you’re getting at here, but how come other forms of chemo don’t leave patients riddled with this nasty disease like we are? What is so different about iso? And how would one treat chemo toxicity? I mean we would obviously just have to treat symptoms and find out what that chemo triggered right?
  3. Yesterday
  4. Anyone else get a Malar type rash when laying out in the sun...? I’m currently in Florida visiting family and I was laying by the pool and walked inside and was burnt from cheek to cheek and across my nose. But no where else significantly got red...
  5. Didn’t know about this. Thank you for sharing!
  6. Last Week
  7. Ordered it through walk-in for like 30 bucks! And had it faxed to my GP! And yeah, he did say there were a few routes I could take. But I think the cause of my Hyperviscosity is from the amount of immuno proteins floating around in my system. So maybe an immunosuppressant could help. I also just want to trial out some prednisone regardless, considering it helped some people like significantly. And a person with a igM protein spike was able to bring it down by dosing prednisone. It’s like the puzzle is slowly coming together. For me at least. Having that spike in immunoglobulins and then this...
  8. If it’s a 5AR problem then why do some of us have normal DHT levels?
  9. So I got my sed rate back.... it was 2.... the range is 0-15 So since there can’t be a negative sed rate, I decided to look up the causes of a lower measurement. What pops up? Hyperviscosity of the blood. TONS of CFS sufferers have sed rates ranging from 0-3 and a lot are forced to believe it’s a result of really thick, sticky blood. This would explain a lot in my opinion. I had an abnormal protein spike on my electrophoresis. Not entirely sure which protein was spiked but I was diagnosed with MGUS and need to get checked up on every six months to make sure it doesn’t turn into anything more serious (cancer etc). Wanna know what causes Hyperviscosity? High plasma proteins in the blood. What causes high proteins? Not entirely sure. Certain infections, immune dysfunctions have been known to set them off. But having high amounts of plasma proteins means high antibody rate.. which would explain my immune system issues. Certain forms of low grade inflammation are also not detectable by CRP or ESR my doctor said. I think my symptoms are a result of the constant stream of antibody release mixed with poor blood flow due to Hyperviscosity. Even though I can’t find the exact cause as to what triggered these plasma proteins to become overactive, calming them down with an immunosuppressant seems like the next best thing until we can figure out how to remove the root problem. Thought this was super interesting. Anyone else have lower sed rates? Slowly but surely piecing this together.
  10. Also have any of you guys realized (before Accutane) that when you would get sick/flu your acne would noticeably clear up...? Cause mine did. So it just adds into my theory I guess. No wonder my skin looks amazing, if my damn immune system is in overdrive.
  11. I’m going in for an ESR test this week. It’s cheap through walk-in and until I can afford the full cytokine panel, I’m just hoping something comes back high. I had a monoclonal protein spike which was indicative of kidney disease. So now to figure out what is affecting them. There’s really only a few options.. and im definitely leaning towards inflammation I don’t mean to make it sound like I have any of this worse than the rest of you. But my health is a serious progressive downhill spiral. I started out not terribly affected and after about a year and half, I’m just an absolute cripple. Organs are definitely being affected. I see a lot of PAS and PFS sufferers kind of even out and just coast at a certain level of degradation. But mine is happening fast, and hasn’t “evened” out. I get worse and worse by the day it seems.
  12. I’ve reported many times that I have proteinuria. Your urine shouldn’t be foamy.... or dark....? And if your doctor is disregarding it and saying you’ll be okay is totally not cool. This is progressive and my proteinuria has only gotten worse. Mine is bubbly foamy almost every time I go. I’m leaking protein practically every time. I also don’t have to go as often, even after drinking plenty of water. Peeing too often or not often are both signs of the kidney’s being affected. Also had an abnormal protein on my electrophoresis. They dove into this further but only to search for a form of cancer. Didn’t find any which was a relief but there are still other causes for abnormal proteins.... and gee I wonder what the biggest culprit is... hmm INFLAMMATION !
  13. Last Month
  14. The thing with autoimmune/inflammation related issues is that it can take years and years to even come to any sort of conclusion. I’m just lucky in the sense that my kidneys are clearly being affected (never thought I’d say that in my life? But having a diagnosis is way better than years and years spent trying to figure it out). What I’m getting at is that maybe our inflammation isn’t so drastic that it picks up on tests, but the more sufferers we have responding to immunosuppressant drugs, I think we would scoot closer to an answer. If my kidney’s continue to be affected, then that can lead to crazy serious health problems. (Not that these aren’t already serious but like I’m talking death, and dialysis and all that terrible stuff). I’ve been riding this “inflammation” boat for a while and I will hold pretty true to it. Autoimmune diseases are sometimes caused by something keying a genetic lock. Maybe we’ve all had this brewing inside of us and the stress of Accutane unlocked it and now we’re stuck with it. And the only way out is through treatment that could quite possibly cause remission and we’re back to living fairly normal lives! We don’t know! All I know is that many of the autoimmune diseases triggered by Accutane can be put into remission. My friend took Accutane and developed ulcerative colitis (doesn’t believe it was Accutane but I roll my eyes) and has been in complete remission since her prednisone enema (tmi lol sorry). But now that I know my hormone levels are fairly normal, I’m moving away from that until proven otherwise.
  15. Have you tested ESR? CRP? Cytokine panel? Im just hoping some form inflammation shows since I clearly have been having kidney involvement. It will have to pop up somewhere
  16. https://academic.oup.com/ndt/article/15/6/923/1858614 This is literally what I’ve been having trouble with. Foamy/bubbly urine etc. The boy’s ESR in this journal was sky high. I’m going to get this test done before I dump money into a cytokine panel.
  17. You’re right. Arguing will get us nowhere. I just deleted what I said, I apologize. I have boiling points with this damn disease. Now is your atrophy reversible? What other knowledge did you gain from this discovery? Have you had cytokine panels done ever? Why haven’t you trialed steroids? What if it helps tremendously? I get it. Finding the root cause. But just so you know that you’re looking down the right alley, why not experiment with prednisone? Especially if you were positive for dysautonomia. I’m just scratching my head as to why no one is giving it a shot.
  18. I believe so? I’m just wondering if it’s our brain being like “hey save me from this chronic inflammation” and so DHEA is pumping out like crazy. (Obviously not enough to make a profound effect) I got my cortisol results back and they’re relatively normal. I’m just still hooked on the fact that prednisone had completely eradicated all symptoms for a PAS sufferer (maybe even a couple) and quite a few PFS sufferers as well, yet no one wants to experiment with it. If I could get my hands on some, I sure as hell would. And if I felt better I’d be on it for life, regardless of the risks. Anything is better than living with this hell. The biggest change I noticed since the onset of all this bullshit was a crazy shift in my immune system. When I tell you I haven’t gotten “sick” in the longest time, I truly mean it. If a scratchy throat comes about, it’s gone the next day. Bacteria is constantly being killed so nothing to cause acne. Dry flaky earwax could be a cause of dermatitis in the ear. Dry skin is also a symptom of inflammation. Inflammation in the brain could be causing ALL of the mental sides. Why do I feel worse after I wake up? Maybe because my immune system runs rampant when asleep. Telogen effluvium body wide? Inflammation. Chronic soft green stool? Inflammation. I’m just not sure why we haven’t tried this route at all! CRP and ESR tests have been proven to not be the greatest indicators when it comes to low grade body wide inflammation. Has anyone had a cytokine panel done? Interleukins? @guitarman01 Wouldn’t you be sensitive? Are you even affected by this drug like you say you are? Your posts are confusing. Anyone could tell you that. I understand I lash out here and there, but that’s because of how fucking exhausted I am. How you can even sit there and understand what you post is astounding to me because your “fog” or cognitive function is clearly not all that bad.
  19. Has anyone ever thought our DHEA-s levels are so high because we’re trying to fight some form of inflammation....? No?
  20. That’s all @guitarman01 does. Not the most motivating person on this forum, that’s for sure. He spews loads and loads of information but then refuses to break any of it down and explain it simplistically. Then he uses the excuse “it’s a part of my plan” “this information is for my own use”. Like wtf ? Annoys me the most tbh.
  21. I was on the drug for literally 4 weeks...
  22. http://www.allthingsmale.com/community/members/clayton95.24136/ Clayton, did you test your estrogen as well?My results show an elevated cortisol level (yours is almost at maximum also), and a high estrogen.Do you suffer from hair loss? Very surprised to see high DHT, as my understanding is this would be very low? @flynn@Dubya_B There is this as well. Vitamin A Increases DHT By Enhancing 5-alpha Reductase http://www.ncbi.nlm.nih.gov/pubmed/10423178 Administration of all-trans-retinoic acid (ATRA; 60 mg/kg daily for 3 days) to male rats increased the rate of 5alpha-dihydrotestosterone (5alpha-DHT) formation from testosterone in microsomal fractions in vitro. The formation of androstane-3alpha,17beta-diol from testosterone was also increased because of the higher concentration of 5alpha-DHT produced in microsomal incubations. it was found that administration of ATRA to gonadectomized male rats produced complete feminization of the enzyme. What is the main androgen produced by the testes? Testosterone. These findings suggest that ATRA is a novel positive regulator of the 5alpha-reductase that in combination with the removal of circulating androgen, which normally suppresses 5alpha-reductase levels, feminizes the expression of this enzyme in rat liver Urban Dictionary: mindfuck https://www.urbandictionary.com/define.php?term=mindfuck an idea or concept that shakes one's previously held beliefs or assumptions about the nature of reality. Deleted
  23. Literally same. I find I actually feel better when I get LESS sleep. Like some process is happening during my sleep to make me feel like such crap when I wake up. Like either the low cortisol is causing low blood sugar (I could see this being possible because I always wake up with dry hands, mouth etc. which is a common trend with low bs). Or it’s something immune related that is activated when I’m asleep and causes me to feel like crap upon waking up. Adrenal supplements won’t do a thing. If it’s true adrenal burnout (essentially Addison’s disease) we would need hydrocortisone to feel relief again.
  24. I’m forced to believe the chronic fatigue is related to cortisol. Do you also wake up early for no reason? And do you have super light sleep? My fatigue is easily one of the worst symptoms. Have you had cortisol tested? I have crazy high DHEA-s forcing me to believe I’m in one of the last stages of adrenal burnout. Because I’m ALWAYS exhausted
  25. Quick question guys... The free and total testosterone test I ordered was recommended for women and prepubescent boys. I’m just wondering if a 22 year old man should have ordered it. It was something like an LC/MS method? I didn’t realize the exact details on this test until I reviewed it on quest diagnostics. Can you guys give me some insight on this?
  26. I’m thinking more along the lines of some form of adrenal issue. Planning on getting my cortisol tested soon. Also, my estradiol is pretty high High DHEA in attempt to heighten cortisol ? I don’t know. I’m puzzled. Not entirely sure it’s a desensitization because I grow a beard relatively fast. Chest hair. The whole works.
  27. I haven’t been taking a damn thing. I made sure of that before my hormonal tests.
  28. Raging fatigue even after sleeping 10+ hours Cognitive/memory troubles (but long term memory is fine) Cold/Heat intolerance Telogen effluvium body wide Dry red eyes (pressure behind them and in forehead) Rarely getting sick low libido rarely get morning wood Muscle wasting Crazy weight gain in mid section/face Atrophy of my vocal cord muscles
  29. I do have sexual dysfunction. Basically no libido, can’t keep it up etc. The thing that worries me is although my testosterone looks good and all, I never had it checked before accutane.... So like what if it did drop and I have no idea..... Another strange thing is my DHT is kinda low, estradiol seems pretty high. No idea what to make of this