24 Hours Post CCSVI, I feel Horrible ! Please Comment

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby LymeNurse » Wed May 04, 2011 5:55 pm

At the time, I only had a pos. Fibrin Monomer with other Labs Pending. I will add in Boluoke tomorrow as I now show a very elevated Fibrinogin Antogin with no explanation.

IR did point out that I had a ton of clots come out on the sheath after the procedure which he commented he had not seen in any patient before.

I see a Hematologist on Monday for all of this as other labs r/t Hypercoagulation are also coming back abnormal.

I think others here should be checked for this as this could be the missing piece of both post-op Rethrombosis and or Re-stenosis.

What do you think ?
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Postby leetz » Thu May 05, 2011 12:57 pm

Hang in there...take it month to month rather than day by day...(that is what my IR told me to do)...May God give U Many blessing's to you and your's...
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby bluesky63 » Thu May 05, 2011 1:05 pm

Did you have any pre-procedure blood thinners? Or only afterward?
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Postby LymeNurse » Thu May 05, 2011 1:28 pm

20 min. prior to procedure I got my first ever Lovenox SQ, then I'm continuing for 19 more days, but today I added in the Boluoke.
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Postby Filmmaker » Thu May 05, 2011 3:01 pm

is the headache easing of? Pressure headaches are my worst sx and i would go for ccsvi treatment if that can get me rif of this but apparently it added to yours, it would be great to have an explanation to that...
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Postby LymeNurse » Thu May 05, 2011 4:06 pm

My IR told me headaches are common post procedure. The head pressure is gone as is the Brain fog issues. Time will tell the total outcome. Be sure I will keep you all posted on what I'm doing and how I'm feeling.
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Postby Merlyn » Sat May 14, 2011 2:03 pm

I still work with the environmental illness Dr. by the name of Dr. Lyn Hanshew and she has me nebulizing a mixture of ACZ (nano zeolite), ACS (nano silver) and glutathione. I put a teaspoon of the zeolite, about a quarter teaspoon of the silver, and one 200 mg capsule of buffered glutathione into the nebulizer and breathe it in. This seems to be fairly effective because I have been able to reduce my thyroid medication from 110 mcg of liothyronine down to 65 mcg, although this may be reduced again soon.

I don't know whether it will help you, but I had a terrible Herxheimer reaction to my first hyperbaric treatment and like an idiot I did not nebulize afterward. I don't know whether the Herxheimer was due to bacteria die off, pathogen die off, viral die off, heavy metal mobilization... who knows? The second dive that I did, I nebulized within an hour afterward and it took away all of the Herxheimer symptoms, nausea, fatigue, just feeling unwell. Zeolite is the most amazing compound for absorbing any kind of neurotoxic/metabolic poisons and heavy metals etc. It totally stops the reaction to detox therapies and it irrevocably binds the heavy metals so it prevents the redistribution. Nebulizing has been my best yet detox modality. I would highly recommend it if anyone is suffering from Herxheimer reactions, it is amazing. It gives you about a six-hour protective window.
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Postby LymeNurse » Sat May 14, 2011 2:29 pm

If you have a Herheimer reaction from HBO, there is a good chance you have Babesia as a co-infection.

I know of many with known Babesia that had the exact same response immediately after HBO.

Just a heads up !
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Postby LymeNurse » Sat May 14, 2011 2:32 pm

Also, Dr. Shoemaker has a great Protocol to reduce the Herxheimer Reaction or eliminate it. He specializes in Mold and Biotoxins, etc.

He uses Cholestyramine and Actos combo.. Here is a good .pdf file Slide Presentation.

http://www.helbredt.dk/pdf/Biotoxin.pdf
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Re: 24 Hours Post CCSVI, I feel Horrible ! Please Comment

Postby Rici » Tue May 17, 2011 4:18 pm

LymeNurse wrote:I was 90% Stenosed in the Left I J and 60% in the Rigth. Azygos was also Angioplastied. No stents.

I know some of what I feel is normal i.e. pain at the groin site, soreness in the Azygos area, soreness in my neck.

But let me tell you guys, what I'm feeling today is very similar to what I feel when I treat my Lyme too hard. In Lyme world we call it a Herxheimer reaction. A Herx reaction is caused by the die off of Toxins. It is thought to cause a Cytokine Reaction where T-Cells attempt to remove toxins, resulting in inflammatiuon and a temporary increase in symptoms and perhaps the onset of new ones. Often, Flu like symptoms will appear during this time.

So, I do feel like I am having a major Herxheimer reaction post CCSVI. It actually started yesterday soon after the procedure. I slept a good part of the day b/c of all the meds on board. I don't feel the meds now, but I do have this terrilbe headache band around the top of my head. I am also dizzy with slight balance issues, which is new to me. I did alot of crying last night and it's starting again this morning. It's not a "I'm depressed" crying. It's more of the Neurological type crying I would get, again, when I try and treat the Lyme too hard. I did not cry for 3 weeks prior to my procedure as I put all of my Lyme treatment on hold, trying to establish a baseline.

I have been freezing cold and chattering my teeth, but the temp in my house is normal. I'm aching up and down my spine and I just feel an overall malaise. The worst symptom by far is that I am very shaky and it feels like my CNS is going haywire. It's not a True Anxiety, but perhaps 100x Worse. I will see my IR today for f/u scan.

I propose the Theory that I dumped a ton of Toxins real fast and they are now circulating in my blood stream looking for elimination. Prior to CCSVI, I propose these toxins were Stagnant in the brain. Because I'm dealing with Lyme, I'm not just talking about Iron deposits, but dead Borrelia and god knows what else.

I would appreciate any and all thoughts. I'm sure this has to be temporary as I was so stenosed, but OMG, is all I can say for now.

Gary Engelman, BSN, RN

Hi
See my posts. I am after the second surgery (21.XII 2009), when I got a damaged valve "turbo M.S. "
Regards
Rici
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your post procedure health?

Postby cmozena » Mon Jun 06, 2011 7:16 am

Hi, I had similar angio #2 post procedure symptoms (chills, heat/cold up and down spine, wiped out energy wise. This subsided in a week and I was out of bed. It's now 4 mos. later and some of the improvements remain (bladder problems FIXED, painful hamstring FIXED, vision clarity excellent) but my walking continues to deteriorate.
Having gone thru the same post procedure problems as you, I don't think I'll do this again for another year or two. It was so scary to clearly have procedure related issues that I had to stop and say to myself 'you chose to do this and what if I'm causing more problems to my health'.
I'm content with the improvements for now and plan to be an observer for awhile.
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Postby Cece » Mon Jun 06, 2011 7:27 am

It's interesting, there were people who came down with the flu (or flu-like symptoms) after the procedure, and there has been discussion of why this seemed to be a pattern or if it was just the result of exposure to germs while travelling. Herxheimer is another possible explanation, even in people not aware of an infection. Herx is not limited to lyme but could happen with cpn too I'd think? Just a thought.

LymeNurse, haven't heard from you for a few weeks, hope you are feeling better and better.
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