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Everything posted by issie

  1. Trying to find another way to tame down these trigger happy, over responding mast cells......is the goal. I'm not having a huge success with the cream I'm trying now, but have another one ordered - with less ingredients. It's not a goal to add more histamine to the body. The goal is to stop so much over production of the body own mast cell degranulation. Trying to get the suppressor H2 and H3 to easier detect when it is there and maybe stop the so easily triggered mast cell response. Sort of an immunology type treatment. It's still an ongoing experiment for me. Not there yet......
  2. I found a used book on Amazon and got that, for the same reason.
  3. I was just sent this. This is the article that Ravikovitch tried to publish in the 90s about his treatment (it appears at the end of the book) and rejected by the well-known UK immunologist S.T. Holgate. It is a summary of the content of the book for those who do not feel like reading the entire book.https://drive.google.com/open?id=1qkm0olLzL1XOBB6rte14eJdKR9HkxCj6
  4. @MTRJ75 I hear you. We sure have an uphill climb and a need of awareness with our illnesses. Thankfully they are becoming more known and there is more press. But, still few new "tricks" to help us. There are so many illnesses that they are finding dysautonomia and mast cell issues involved with. I have been of the opinion that there is autoimmune issues and inflammation and that may be the "core" issues. Get to the "core" of the problems and then the symptoms will fade away. But we are all so complex and there are so many different puzzle pieces to discover. There is no way possible to treat the masses all the same way because of this. But just maybe we will find a "purple bandaid", to give more quality of life as we research and continue connecting the pieces. It appears this may be a big piece to this puzzle. Let us hope so!!!! I'd like to hear how people do if they try this path. So far, I'm encouraged.
  5. He doesn't try to hide that Big Pharma doesn't like it. He doesn't try to hide what he went through trying to get people to listen either. That actually made me pay attention more. I'm one who questions EVERYTHING. If you ask Mayo docs about me, they got really tired of my questions to them and insistence that certain things were at play. I'm the one who got Mayo in AZ to look into MCAS in the first place. I wouldn't let up as to it being connected to POTS. Now all POTS people are tested for it there. So I'm a sort of pioneer helping to make the path on this subject. "But Issie said.....", Mayo heard that a lot. Got to love them.....as they listened and looked into it. But, as all my old POTS buddies on here and elsewhere will attest to......I strongly question how POTS is managed by doctors. I feel a lot of our symptoms are compensatory responses and absolutely the lesser of the two evils and trying to right a wrong. I tried anything and everything doctors gave me in the beginning of finally being DX. And it all made me worse. Now I manage that myself and pretty well with natural things. Also tried to keep a positive attitude and not give in or give up. I still have it and have since a child. But I've had a very full life despite it. So when it comes to MCAS, never thought of it as a compensation. But this has made me take a second look. Why not, why couldnt it too being trying to correct the worst of two evils? But to learn I was suppressing H2 with medicine and doing it to myself. The one thing that needed to work......I was upset to say the least. I had already started getting off my MCAS medicines as I felt they were affecting my cognitive function. But I also was reacting to everything and they were not helping. I was getting sicker. My vitiligo was going wild and other autoimmune things were showing up. (I also had Lyme and CIRS.) I took it upon myself to seek a different approach to MCAS. One thing of benefit was a low histamine diet. Changing diet was something only I had control over. Was very necessary. Then I started using bee products for allergic responses. And also enzymes with lutolin. Then......thankfully, I paid attention when this guy posted this book. He is a wealth of knowledge and eager to share. So if you want to know more, I suggest contacting him. He is wanting to spread awareness and was a MCAS suffer himself. Histamine is being used for other illnesses of serious concern and there is much printed peer reviewed articles showing it. I'm not sure if this is the whole picture, but likely a big part of the complex puzzle we all have. I'm very hopeful. It's a work in progress.
  6. This article gives a good overview of the Histamine Receptors and what they do. A sort of Summary/condensed version of the book. You will note that Histamine is being used for ALS. Also is being used for MS, leukemia, cancer and other things. Histamine beyond its effects on allergy: Potential therapeutic benefits for the treatment of Amyotrophic Lateral Sclerosis (ALS). Histamine beyond its effects on allergy: Potential therapeutic benefits for the treatment of Amyotrophic Lateral Sclerosis (ALS) ALS currently remains a challenge despite many efforts in performing successful clinical trials and formulating therapeutic solutions. By learning fro… www.sciencedirect.com
  7. Here is his Twitter link. If anyone wants to contact me I can do it here and on Twitter https://twitter.com/bayard_horton
  8. I asked the guy who told me about this if I could list his post so that others could contact him. He said that would be fine. He also has a Twitter site with a whole lot of articles on there. Mast Cell - Histamine (Immunotherapy With Histamine) | Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums https://www.healthrising.org/forums/threads/mast-cell-histamine-immunotherapy-with-histamine.6233/
  9. I have HyperPOTS, Ehlers Danlos, MCAS and a whole bunch of other autoimmune things and Hypogammaglobulinemia, FMS, ME/CFS and severe Mitochondria dysfunction. I have in the past contributed on this site extensively and on another site with years of trying to find answers. This all is in my family and my sister and I are and have been in a lot of studies. I'll warn, this book is very technical and would be considered controversial by Pharma. I'm quite versed in medical things and I'm still not finished reading it. But, I am in self experiment with its ideas and finding it helpful. I've been off all my MCAS and POTS and pain medicines for almost 2 months now. I'm in less pain than I was on them and and not any worse being off them. Still tweaking, but feel encouraged.
  10. It does, but not real specifically. You can PM me and I can tell you more of what I'm doing. I don't think they allow me to do that here. There is a cream I got from Amazon. It took some trial and error to figure out how to use it. But I'm getting it sorted and having benefit.
  11. I was sent a book of a different approach for MCAS and other illnesses. It is very technical, but fascinating. I have been off all my MCAS and POTS medicine for over a month now. I don't have it completely figured out. But making improvements. https://drive.google.com/file/d/0BxK4lGunsmzgTHBCeHJlY01jV1E/view
  12. Depends on if you need the blood vessels to constrict or not. For me, too much constriction makes me worse. I have thicker blood and issues with coagulation so I need to thin my blood and dilate some to help my blood flow. We are all different and have to figure out what our body is doing and why. When I tried the constricting meds, it made me much worse. Issie
  13. There are genetic things that can cause too thick blood. I have Factor VIII and Collagen Binding problems and it's still undetermined if I have APS. I got a positive one time and negative another. I use Vascuzyme by Empirical Labs in the morning and either serrapeptase or lumberkinase at night. You have to pay attention if you start brusing bad you are using too much or if cuts dont clot off fast enough. I also use herbs that can thin blood occasionally. It does seem to help. I also do better to not vasoconstrict internally. I use binders when traveling. Issie
  14. We found I have too thick blood. Instead of blood thinners, I'm using enzymes. It makes a huge difference.
  15. Yes, occasionally I do. Started with silent ones and they progressed to the pain ones. Not often, thankfully, but do get them.
  16. There supposed to be a neurologist at UAB who has started an Autonomic clinic. I hear he is good. Would love to know if anyone has seen him as I just moved to AL and will be starting the doctor hunt.
  17. As a HyperPOTS subtype, I have higher blood pressure too. Absolutely none of the mentioned meds here worked for me. As we further define the subsets, its Interesting that they would still be RXing the same meds tried for other subset types with lower blood pressures. If we aren't deficient in Salt and we aren't losing it.....why add more. I had a nephrologist tell me the normal treatment for low renin and Aldosterone is a diuretic. We dont need to lower either of those (renin or aldosterone) more with ACE or ARB as that part of the system is already broken and too low already. For me, I've found other issues like Collagen Binding Factor and Factor VIII blood thickness issues. Instead of vasoconstricting blood vessels I need to dilate and thin blood. There can be so many reasons for us having HyperPOTS. Also the triad with MCAS and EDS. There is alot of genetics at play here. I've basically had all these things most of my life. Just age has intensified some things. It is generations in my family. I just got results from a study done with my sis at University of Utah and genetics.....lots of genetic mitrochondrial issues. I know we would all like a list and an order to go in. But this is just not possible with the complexity we all seem to have in our own individual puzzles. As for medicine, for me.....still my best thing is 1/2 to 1 50mg. Tramadol and a 10mg Bentyl. I use enzymes for blood thinners and some herbs to help slightly vasodilate my veins. Light Compression to knee when traveling and abdominal binders, still a help. Also have been in treatment for Lyme and CIRS and fungus found in organ biopsy and blood. This has been a huge help. Still treating mostly with enzymes and herbs. Movement is essential with this subset type. We have to assist our heart with pumping for blood flow. Fidget as much as possible and walk, if you can. At least move your legs somehow. Issie
  18. Testing is so "if'y". We did a Western Blot. I came back with positive co-infections. I also had the red circle. But I didn't get tested or treated until years later. Doxy. Did not work for me. My doc had seen symptoms so much and doesn't feel test are accurate - especially if there are autoimmune issues. I see a Naturopath and she uses various herbs in a certain order - based on symptoms and response. We also treated CIRS at same time. I had all test for CIRS. Including genetic testing. All which were very positive. I'm still having problems with both and probably will be a maintenance for the rest of my life. But I'm a while lot better. More puzzle pieces fit together and my symptoms make more sense. (I'm older too - so that doesn't help things.) Issie
  19. Have you tried raising your head up at night to sleep? Many of us find this helps. For me, I also have sleep apenea. Not only obstructive but central. The lack of oxygen can create more tachycardia. Also, mast cells tend to degranulate worse at night. My POTS didn't get better until I addressed MCAS. Some with MCAS have an additional seratonin surge at night and it wakes them up and gives a burst of energy. This usually happens in mornings - but for some reason mast cell issue people have it happen twice in the day. If there are mast cell issues - beta blockers can make it worse. Issie
  20. Nice to hear you're better. I like Hunstville. We looked around up there. But will have to be south of B'ham doing parent care. Maybe later. Nice you found good docs closer by. I don't do typical POTS treatments and prefer functional medicine. As I don't agree with what most docs do for POTS. But I do need to have someone who at least knows about it if I have an Emergency. I'm better too. Been a long road of discovery. Found out I have CIRS and Lyme. Treating those has helped sooooo much. Still have MCAS and issues with EDS. But over all doing better. @derekliz - who do you see? Issie
  21. Which of the two did you like better? You know I lean more alternative and not RX medicine. Issie
  22. @kimbellgirl thank you for your reply. I'm not looking forward to having to get new doctors, as I'm really happy with the ones I have here in AZ. But need to turn the page, with the move, and go with it. My docs here weren't aware of anyone personally. But I've had a few recommended and have a place to start interviewing. Good to know some names and not move there completely unaware if there were to be an emergency. Issie
  23. I'm wondering if any of you are still seeing docs around Birmingham. I will be moving close to there soon and need to find doctors closer to where I will be. Any suggestions? Issie
  24. Are any of you still seeing docs in or around Birmingham? I will be moving there and need to get established with closer to me docs. Issie
  25. I found out I have too thick blood. Have 2 genetic factors that make me lean towards thick blood and blood clots. Also had a positive marker for APS at one time. Explains one reason why I do better to vasodilate and why a blood draw makes me feel better. Also I have genetic markers for hemochromotosis (but don't have) and blood draws lower iron levels in this illness which makes you feel better.
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