24 Hours Post CCSVI, I feel Horrible ! Please Comment
24 Hours Post CCSVI, I feel Horrible ! Please Comment
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
Keep us updated. It is important that ALL stories are voiced.
I've ridden it before, and it is God awful terrible. It will take days to get better, but it will, that, I am sure of... For now, it's alot of feeling sick.. I don't think this is a restenosis issue.
Thx for the quick responses folks..
Gary
I had a minor blockage which was ballooned.
Just after the procedure I started shivering and shaking. The IR thought it was an allergic response, so gave me steroids. Stopped shaking, but stayed horribly alert and ratty for the next 24 hours, also had high temperature the following night. ,also, don't ever underestimate discomfort in the groin.
Prior to the procedure my blood sugar was low (below 60 mg/dl) so don't know what the cause was blood sugar or something else, no problem since procedure
The thing is it did pass, but it didn't feel good while it lasted.
However, after a few days it did subside, and things really did feel better for a while, than before procedure. Hope it passes for you.
My deepest sympathy to you and what you are going through, but you just cannot assume you know what is going on inside your body. You say you feel llike you have the flu. Suppose you do? Suppose you have a hospital-acquired infectiion? Suppose you are having a reaction to a med? Suppose it's thrombosis?
You really need to be working hand-in-glove with a medical team on this. I am so, so happy to hear you are going back to the doctor. Anyway with lyme you need to take baby steps and not slam yourself with too much for your body to handle!
Hang in there! Take care of yourself!

It is not a true Flu. Lyme patients treat and kill Lyme. If you have CCSVI and Lyme, then Toxins can get trapped in the brain. Should be no different then Dr. Z's finding of Iron deposits.
Open the Veins and it all poors out right ?
The next few days will tell.
I have clotting issues too and trying to address these at the same time.. I have hypercoagulation issues..
Keep you all updated,
Gary
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