bellgirl Posted December 6, 2012 Report Share Posted December 6, 2012 Very interesting!! Quote Link to comment Share on other sites More sharing options...
davecom Posted April 8, 2013 Report Share Posted April 8, 2013 I find this very interesting since I have a confirmed hypoplastic(mrv)/thrombotic(MRI soft tissue of neck) right jugular vein.I know Dr. Diana had this procedure. Has anyone on this board? Does anyone know anyone else with POTS who did? Doctors in NY who do it? Quote Link to comment Share on other sites More sharing options...
issie Posted April 8, 2013 Report Share Posted April 8, 2013 I'm not aware of anyone else having this done. But, my doctor who is treating me for FL1953 (a protozoa similar to malaria), just returned from a seminar in Poland. He said the big talk is that most of the doctors he talked with are feeling that CCVSI is a big problem with POTS people. (Also, they have done testing and most of the POTS people are showing issues with the jugular veins.) He knows the doctors in CA that do the procedure.But, he said that many are only receiving temporary results with this procedure. Then there is a problem later on. He feels that with my issue with an over abundance of bio-films and protozoa and whatever other things are in bio-films - this could be what is attaching to the walls of the veins causing dysfunction and/or narrowing (clogging) and once we eliminate this and correct the vein function and general health of a person --that Hopefully, this will start to correct some of this. He doesn't know if this will totally be the answer. But, feels it will at least help.There are several threads out there on this.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 8, 2013 Report Share Posted April 8, 2013 Are we certain aliens aren't involved? Quote Link to comment Share on other sites More sharing options...
issie Posted April 9, 2013 Report Share Posted April 9, 2013 Are we certain aliens aren't involved?LOL! Yeah - the creatures from within. Ha!Ha! Eerie ----Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 9, 2013 Report Share Posted April 9, 2013 I thought it was vague nerve squeezing that helps? Or is it animals in veins? Or metuylation protocols? Mthr mutations? Candida? Ccsvi? Zeta reticulan spaceships effecting blood flow - mmm Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 9, 2013 Report Share Posted April 9, 2013 Vagas lol Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 9, 2013 Report Share Posted April 9, 2013 Toxins? Herxing? I can't keep up. Quote Link to comment Share on other sites More sharing options...
issie Posted April 9, 2013 Report Share Posted April 9, 2013 Ha!Ha! You're too funny! I take you are feeling better. I'm so glad!Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 9, 2013 Report Share Posted April 9, 2013 When I type vagas nerve the autocorrect rights 'vague' - when I type coinfections it changes it to coninfections - lol. Quote Link to comment Share on other sites More sharing options...
issie Posted April 9, 2013 Report Share Posted April 9, 2013 Ha!Ha!Ha! Laughed til I cried! Ha!Ha! What'd you do program your phone to be a skeptic too? Ha!Ha! We will see. Time will tell. We have to keep an open mind and just see how it goes.Thanks for the laugh!Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 9, 2013 Report Share Posted April 9, 2013 Sure thing.But back to the issue - surely there is an easier way to 'squeeze' the vagas nerve than to operate on someone, open up their jugular vein and put a balloon in it? How does CCSVI explain the consistent findings of QSART abnormalities in patients with dysautonomia and various autoimmune illnesses or just 'idiopathic' POTS? How does it explain low blood volume? Abnormal MIBG uptake in cardiac muscle? Quote Link to comment Share on other sites More sharing options...
issie Posted April 9, 2013 Report Share Posted April 9, 2013 I question this too. I think if there is a problem in one vein there is a problem in all of them. That is probably why this surgery is a short term fix. It doesn't fix the whole body that is having issues. It's just one area. Most think there is a definite issue above heart level and in getting blood flow to the brain. But, I'd venture to say ---it's an entire body blood flow issue and that explains the neuropathies etc. Personally, I think working on the immune system is the key to all of this. Correct the dysfunction there - open up all the veins (or fix the ability of them to constrict or expand) and improve vein health in the entire body - get the immune system to attack what it should and leave alone what it shouldn't be attacking and we should get better. Okay, so that's what I think. What I'm doing is working on those very things. The jugular vein is just one of many that what I'm doing will address.Issie Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 9, 2013 Report Share Posted April 9, 2013 I think these are valid questions too and I don't think CCSVI would explain all the other things. I do think that it could be an additional symptom of the underlying problem or a separate problem all together. But, if it is affecting blood flow to the brain, it stands to reason that fixing it would help at least some of the symptoms associated with dysautonomia,...anything that suffers as a result of cerebral hypoperfusion. The trick is how to make it permanent and safe for those who discover that it is an issue for them. I think this is like any other explanation for our dysautonomias....is the treatment more dangerous or worse than the disease? And, it's not the answer for everyone because we all seem to have variants of this weirdo syndrome. Quote Link to comment Share on other sites More sharing options...
issie Posted April 9, 2013 Report Share Posted April 9, 2013 Yeah, I think it doesn't address enough of the problem. Is it worth the risk? Some say it is. But, I'm a skeptic on this one too. I'm not ready to jump on the table for the surgery. I think our issues are more complex then this. It would be nice to be one of those that finds relief for more then 2 years though. That would be nice!Issie Quote Link to comment Share on other sites More sharing options...
bellgirl Posted April 9, 2013 Report Share Posted April 9, 2013 Love to watch you and Rama banter, Issie, but sorry you have little "bugs" in your system. It reminded me of that show "The Monster inside of me" that used to be on Discovery Health!! Did you see the video from U tube that Rich put on one of these threads about MS being caused by some sort of Chlamydia Bacterium?! This scientist's wife was literally an invalid, and he treated her with an antibiotic concoction of his, and she has recovered remarkably. I find all of this very interesting. I'm going to a neuro-opthamologist in May, who used to be a Neurologist. He was recommended to me by my Neurologist, because of my vision problems getting worse. I think it is circulatory, but I want to make sure I don't have any ocular aneurysms, being that they run in my family. I will let you know how it goes... I always seem to close my right eye, so I can see better...lol. You've got to keep your sense of humor!! Quote Link to comment Share on other sites More sharing options...
issie Posted April 9, 2013 Report Share Posted April 9, 2013 Thanks Kim! Rama and I have been friends and on this forum for a long time. Sometimes, we've fought. Sometimes we agree to disagree. Sometimes, we're backing each other up. Makes me happy when he feels like joking around cause that's a very good sign that he's feeling better. Keep it up Rama! Yes, I was not too surprised when they found this with me. I remember getting bit by the tick and had a sort of flu in the bed and the red ring. (Little critter had been there for awhile.) Never was treated - so this was a long term infection that was found and will be a long time to recover from. I don't know if this is all the answer for me --but, am quite certain it will be at least part of the answer. I had a bit of a set back with my antibiotics this past week. Really scared me --but, all is settling out and today ----feeling really GOOD. I was very productive and went to several stores and bought groceries. That might not sound like a lot but for me it was a major improvement. I was telling someone else about what I'm feeling with my circulation. I'm starting to have the feeling back in my feet and legs - my neuropathy is getting better. And I've started having a tingling like feeling in my legs and feet. Sort of like feeling the circulation of my blood ---sort of energizing. The veins in my legs look so much better and all my little spider veins are leaving. I really think this treatment that I'm doing for the protozoa and co-infection which also addresses my immune system ----is really going to be good for me. I know I'll have ups and downs (and you that I whine to ---THANKS for being there for me and letting me vent), but, I'm starting to have some real positives.I hope that your eye issue is circulation and that they can figure out something to do for that. Let us know what you find out.Issie Quote Link to comment Share on other sites More sharing options...
bellgirl Posted April 10, 2013 Report Share Posted April 10, 2013 I'm glad the antibiotics are helping you, Issie, and that you are getting the feeling back in your legs!! Going to several stores at a time makes me suffer consequences, so I try to do one thing at a time, if I can. Sometimes I'll go to the pharmacy and the grocery, because they are right across the street from one another. I basically shop in that one mall that is a few minutes from my home. Today, I washed the sheets, and I will go to choir this evening. I'm only two miles from my church. Yesterday, I went to the grocery, and exercised at the YMCA with my husband. Tuesdays are always too much for me, and forgot some of my meds, and was awake most of the night, even with Ambien and Klonopin. Geez... I'll try not to do that again!!But, truly, I'm much better, too. I'm eating better, always get some form of exercise, and I almost forgot that I was "sick" one week until Saturday, when I was freezing, laid in the recliner with a blanket, and fell asleep; Tom made dinner, and I was fine after that, but that was one of those times when I overdid and suffered the consequences. I tend to do that when I'm feeling well. Just a word of warning...so I do try to pace myself, and I do much better. The Wellbutrin XL is helping in more ways than one; so I'm glad I decided to get on it; it has improved my energy level. It didn't increase my B/P or heart rate, like I thought it might, and I'm tired at night, and ready to go to sleep. So other than my vision, I'm OK, most of the time. I'll let you know how my appointment goes... Quote Link to comment Share on other sites More sharing options...
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