Topic: For those who have done the CCSVI procedure - can you please share updates?
Tammy N.
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posted
Would like to hear any pros or cons.
Also, where did you have it done, and could you please share cost? (Send PM if you prefer.)
Thanks! Tammy
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MichaelTampa
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I had mine done in September 2011 at Moffitt Center in Tampa. The man who did it now works somewhere else, perhaps doing the same thing, I don't know, but Moffitt has someone else doing that procedure now.
I had an excellent result and it helped decrease some of the neuro symptoms substantially, like sensitivity to wireless.
I just had a 6-month doppler follow-up test (1 of the 2 tests use to diagnose the problem in the first place), and it showed just what the 1-month follow-up showed, no more signs of CCSVI.
They charged $10,000, of which I paid $1,000, and my insurance paid the rest.
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Tammy N.
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Wow, that's pretty impressive to hear!
I'm trying to find out where I can be tested. What was the other test? Do you by any chance know of reputable facilities in the northeast for this testing?
Thanks Michael. Hope you are well.
Tammy
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dmc
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I had mine 11/2010. Mine was at R.I. Vein Institute. Felt great but at the 3 month follow-up my Right Jugular was occluded.
Want to have it done again but will go to a famous CCSVI doctor in NY
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posted
Can someone explain what this procedure is and how would you know if you qualify for it? Does it help head symptoms?
Thank you
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MichaelTampa
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Tammy - I don't know any in the northeast. Probably a pretty good place to look would be on some sites for multiple sclerosis talking about ccsvi. It is really the MS community that has embraced the procedure. The other test was MRI with injection of gadolinium. That test took me a couple weeks to recover from, it is a radioactive injection. It's not used for follow-up, just for diagnosis. The doppler is very easy/safe, just something touching your skin bouncing sound waves in you and out and they can analyze that.
jwall - Wikipedia has a pretty lengthy article on ccsvi. In brief, it is blocked veins in the neck blocking return of used blood in the brain. The brain uses the oxygen in the blood, it is supposed to return to the heart to be refilled with oxygen. When stuck there, the brain can't get oxygenated blood anymore, because the bad blood is stuck there, not making room for the new stuff. This is the cause of many neuro symptoms of lyme disease.
The procedure being talked about on this thread to treat the condition is angioplasty. It was discovered by Dr. Zamboni in Italy that this procedure can help some MS patients. Dr. Zamboni is a radiologist (angioplasty performer) and his wife had MS. It is controversial because the standard MS community has been lead to believe there is no treatment and they have to live with a disease without a cause, so of course they fight a treatment that has benefit. It is interesting to read the wikipedia link with knowledge that lyme and MS are similar, because the unsolved mysteries surrounding why this would help those with MS really become so clear with that knowledge.
Chronic lyme disease is a CIRCULATORY disease. Yes, there is infection, and it causes biofilm and it blocks up your circulatory system and means you can't kill the bugs. So the circulatory disease aspects prevent you from killing the bugs and cause symptoms themselves.
Biofilm should be very seriously addressed before attempting the procedure; otherwise, the blockage has a good chance of recurring.
[ 07-15-2012, 01:04 PM: Message edited by: MichaelTampa ]
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posted
Is this a safe procedure? Can you tell me what symptoms this has helped for you?
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Tammy N.
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dmc - who is the doc in NY? Please send me a PM. Can you please also share cost? Did you do both the doppler test and MRI with gadolinium?
Michael - Thanks for all this great info. I did have an MRI w/contrast done in February on my left ear/jaw area because I have a lot of discomfort that also sometimes radiates down toward my thyroid. I was told everything was fine (sound familiar??) Anyway, I'm going to pick up films from the ENT's office tomorrow. I'm hoping it got good images of the veins as well. I wasn't even thinking much of CCSVI then, but that would be great if it captured something there as well.
I totally agree with you....If going this route I think you need to stay totally on top of biofilm busting measures so it doesn't clog up right away again. From what I've heard, a lot of folks re-clog.
I'm just wondering if there are other unclogging measure that can be taken short of surgery. Dr. K recommends bee venom ointment. I've just started. I would like to have an initial scan done soon though so I can measure progress.
I too would like to better understand the safety and risks associated with this procedure.
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posted
If you read the wikipedia description, it sounds like it doesn't really work and comes with great risks. Still, my LLMD (one of the top LLMDs) has recommended a patient (a friend of mine) to have it done at a place in Atlanta. She is in the process of doing all of her research and she says she still has lots of questions that she needs answered before having it done.
Tammy, where did you get your bee venom ointment? Do you just rub it on your neck?
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Lauralyme
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jwall....your LLMD recommended the procedure to your friend but not to you?
Are there certain symptoms that would make a person a better candidate?
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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Tammy N.
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I got mine from my doc....who is a Dr. K follower. It is called Venex by Apitronic Services.
It is first suggested to rub in a small amount on the inside of your forearm to make sure you do not have an allergic reaction.
I'm still starting with tiny amounts on my neck until I get use to it. It feel interesting.
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GiGi
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Please check some of my old threads on the subject. I also posted the clinic in Las Vegas who performs that service. All you need to do is call there and ask the questions. If you can't find the number, please give me a call.
The method as to how the treatment/intervention is performed differs from place to place.
Best wishes.
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posted
There's one in the Boston area. That's all I know though. My dr. went to one there to learn and actually assist in doing them to learn about the 'gunk' that they find.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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MichaelTampa
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Heparin is another thing Dr. K. has talked about as generally dealing with biofilm/thick blood. I remember him saying at one of his conferences, he has not done it himself, as he is trying to see if the same ends can be achieved in other ways. This was in May of last year. In January this year, he was at some other conference, and there were no other ideas offered, but I don't remember him spending a lot of time on that topic.
Another thing that might be considered is artemisinin gel, such as from Allergy Research Group. Of course, there is cistus incanus tea, EDTA suppositories(such as Detoxamin), Regulat.
The guy who did my procedure stated, with veins, they have valves in them, and the clog is behind the valve, so blood-thinning kind of stuff in the blood, in the area of the clog, the actual passage through the vein is thin, and pressure will be high, and the blood will zoom right by that area, it won't stop, turn the corner and go behind to try to loosen up the clog. For those that believe this theory, perhaps gels/creams (such as artemisinin or bee venom) will have better chance than things you swallow or inject into veins.
For the benefits, I would broadly say anything neurological related, anything that your brain needs oxygen for. For MS patients, I think fatigue and response to exercise or other physical duress is a big one I heard from the doc that gave me the procedure.
Certainly, blowing up a balloon in a vein cannot be risk free, if it bursts, that's not going to be good. Insertion of stents is something, in my opinion, that is way too risky, unless someone is so sick they are headed someone imminently toward death. It has been done when the procedure is tried and the result of better flow hasn't happened. There are always other ways. The problem with stents is, if it breaks free, it will likely flow to your heart and can block up the flow of blood. Stents were responsible for at least 1 of the 2 deaths mentioned in wiki. My memory is bad on this, but I think the other may have just been a very sick person who happened to not live forever after the procedure was done.
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MichaelTampa
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On symptoms, at the time, it really helped with sensitivity to wireless signals, which was my biggest symptom. It helped with fatigue some. But really, my fatigue status is much more affected by the ebb and flow of the infection-related aspects, killing the lyme, lyme growing, etc.
I have got lots more energy going to the Dr. F super low fat diet. For energy, you need circulation!
After Dr. K spoke on the procedure, I spoke to Dr. F about his thoughts on it, and he said he would be concerned about little pieces of gunk breaking up from here or there, after the procedure, and lodging someplace bad (such as the heart). My doc who did the procedure does prescribe blood-thinners for one month following the procedure for this purpose.
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Lauralyme, I am due to see my LLMD in August - every 6 months. It has been a while since I've spoken with him and maybe he is just now starting to recommend this procedure to his patients?? My friend just saw him I think in June or July. Perhaps he will suggest it when I see him.
I think I'll try the bee venom first! All of my horrible remaining symptoms are head, neck-related and definitely feel like there is a blockage or not enough oxygen flow to my brain.
I have very MS-like Lyme symptoms.
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Tammy N.
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Michael - what you said above (per Dr. F) is one of my main concerns... that perhaps some particles can become dislodged and travel to unwanted places.
I've begun using the bee venom. Very interesting stuff. It feels like you've been stung. It is suppose to be a vasodilator. I hope it works. We'll see....
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MichaelTampa
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This was asked about recently in a new thread. I'm just bumping this up so they might read this. The only thing new I have to report is I used some borax briefly and it appears to have given me additional help with biofilm busting, as I now need much less of the other items I use for biofilm.
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dbpei
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I'm curious about the bee venom. I was actually stung by a wasp earlier this week. I was hoping that it would make me feel better. But I did not notice a change. Perhaps it has to be a bee sting?
Tammy, do you place it on your neck because that is where the jugular vein is - or because that is close to where you think you have blockage? Keep us posted on how this works.
The CCSVI procedure seems risky to me. The condition for which it is used sounds like 'hypoperfusion' as described in many of our brain spect scans. I am glad that the treatment helped you Michael.
I remember reading about borax to treat arthritis in another thread. I did not realize it helps biofilms. I feel some strange things happening since starting samento and banderol, which are supposed to go after the biofilms also. Let's hope they are working...
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momlyme
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I used the venex on my neck and shoulder when I used to have pain there... loved it. What a relief!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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nefferdun
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I have not heard of this before. If you have thick blood, why not use heparin and then boluoke plus the low fat diet? Jiaogulan also helps prevent platelet aggregation and increases energy and concentration too.
I would check into methy cycle mutations before I had invasive surgery done. Certain mutations make you prone to hyper coagulation and you can change your diet (vegan is best) and use supplements to help correct it.
It amazes me that so many chronically ill lyme patients are on a paleo diet with high meat consumption. Animal fat increases toxins and clogs the arteries. Plus the main culprit for biofilm formation is protomyxzoa which multiplies 100 times faster on lipids.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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MichaelTampa
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I believe Dr. K. talked about heparin as something he personally was using. I don't recall if he was actually recommending it, or more doing as a trial on himself to see how well it worked.
I asked the guy who did the angioplasty on me about whether diet / blood thinners / etc would be able to work. He gave his opinion that he really did not think so. He drew a picture of veins with valves inside them, and the valves are somewhere between perpendicular and diagonal to the vein, with stuff clogging behind the diagonalish vein, with "behind" being the key, in terms of blood flow. So, what he said was, with the vein being stuck mostly closed, and pressure built up, any blood (with blood thinner etc) that makes it through there, is going to zoom right through very quickly, and it wouldn't be turning around to go work on the clot behind the vein. So that is why he thought diet/blood thinners/etc really wouldn't work. He said this is very different than the situation with arteries that do not have valves.
I saw his point, although at the time, and still now, do have some doubts regarding that logic, but did want to pass on what he said. I kind of see it both ways.
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