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treehousemom
Regular Member


Date Joined Nov 2011
Total Posts : 176
   Posted 3/19/2012 10:22 PM (GMT -6)   
Anybody had this procedure done for Lyme symptoms??  If so, what are your thoughts?

achievinggrace
Veteran Member


Date Joined Nov 2009
Total Posts : 2485
   Posted 3/22/2012 7:01 AM (GMT -6)   
bump
Co-Moderator Lyme Disease Forum

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14858
   Posted 3/22/2012 12:18 PM (GMT -6)   
Hi Treehousemom,
I looked this up on this site:www.ccsvi.org/index.php/the-basics/what-is-ccsvi and it sure seems like an extreme approach to what could easily be a temporary situation. With treatment so many things that we experience are cleared up, I would be very cautious about having procedures done - especially when they carry such consequences as this does.

Of course I also don't know the exact situation that your daughter (I hope I got that right!!) is in, and I'm not medically trained. I was just speaking from experience about how things can change once a person has undergone a certain amount of healing.

I do hope that you can find more information so that you can make the decision that best suits you and your situation.
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

yazzer
Veteran Member


Date Joined Jun 2011
Total Posts : 898
   Posted 3/22/2012 12:54 PM (GMT -6)   
I agree with Trav...I would stay away from such a thing at all costs unless as a last resort. This seems very radical esp. when the Lyme will clear with proper treatment and with patience.

treehousemom
Regular Member


Date Joined Nov 2011
Total Posts : 176
   Posted 3/22/2012 8:18 PM (GMT -6)   
Thanks guys--I am not going to do anything without tons of research first. It has just come up as an option that we are investigating. I hear there are pros and cons. At this point, she has not had any scans done to even determine if it is an issue. And if it is, I would prefer to do something less invasive. Some people have had good results with it though. . .

Thanks again so much for comments and thoughts!
www.caityboyd.blogspot.com

Mookiemom
New Member


Date Joined Mar 2012
Total Posts : 1
   Posted 3/30/2012 10:15 PM (GMT -6)   
I know someone who did it for ms and it worked wonders. Check him out. dr mark kalina. I think he has a blog on the Internet.

treehousemom
Regular Member


Date Joined Nov 2011
Total Posts : 176
   Posted 3/30/2012 11:29 PM (GMT -6)   
I am wondering if there are other ways to treat this?? Other than angioplasty? If you do not clear up whatever is causing the blockages, ie Lyme, bacteria, etc., you can just re-stenose. So, I do think in some cases, angioplasty may be necessary, but I am curious if the Lyme and co-infections are resolved, does the CCSVI go away on its own? Or with a less invasive method?

Still mulling this over. . .
www.caityboyd.blogspot.com

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3177
   Posted 3/31/2012 7:18 PM (GMT -6)   
Some feel that niacin and the subsequent flush it induces does the same thing as CCSVI. It dramatically dilates blood vessels and causes the blood to circulate and drain from pooling around the brain. It also has a strong anit-inflammatory properties. Avoid the non-flushing niacin. It is hard on your liver and the flush indicates the desired response. However, some can't tolerate the feeling that comes with the flush.

Best of luck.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Blymeyy
New Member


Date Joined Apr 2012
Total Posts : 1
   Posted 4/9/2012 9:12 PM (GMT -6)   
Did ccsvi procedure twice when i thought i had ms.

Basically the interventional radiologist ballooned my valves at the base of my internal jugular veins to tear them so they would nott impede blood flow from my brain.

Eventually, a stent was placed to keep the vein open.

I also had a stent placed in my iliac vein to treat may-thurners.

I underwent venous angioplasty 6 times! NO BENEFIT LONGTERM!

Then i discovered i had chronic lyme! Now in month 6 abx and cd57 starting to creep up from 16 to about 30.

I agree with those above thatif u have a positive lyme dx do the abx!

I now will take coumadin lifelong to prevent blood clots from my stent implants.

Lyme causes vasculitis.

treehousemom
Regular Member


Date Joined Nov 2011
Total Posts : 176
   Posted 4/9/2012 9:43 PM (GMT -6)   
Wow--thank you for sharing your experience Blymeyy!!! I am so sorry that you went through all of that for no lasting benefit. I really do appreciate your sharing, because this is what I am hearing over and over. . . Maybe your experience will prevent someone else from undergoing the same trial.

God bless!
www.caityboyd.blogspot.com

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1489
   Posted 4/10/2012 3:25 AM (GMT -6)   
I'm wondering how much parasite treatment your
Daughter has had?

I am reading this on Betterhealthguy.com what Klinghardt
Is calling ..a deeper look into Lyme.


The parasites seem to be major issue and before abx.
Also trying to overload people with abx without
Getting biofilms out of way seems to be
where it is constantly falling apart in abx treatment.


Fry labs is using ivermectin to treat some parasite.

I think the research and years of TRIAL treatments is taking
us all in new direction with all the coinfections.


Parasites biofilms thick blood ..molds fungi and THEN
Bacterial and viral.

I really believe all of these things are issues
Plus the heavy metals because of thick blood biofilms
Have got to be reduced and awareness of the effects of
molds and too much electro magnetic field.

That website had a lot of interesting info
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,

treehousemom
Regular Member


Date Joined Nov 2011
Total Posts : 176
   Posted 4/10/2012 9:20 AM (GMT -6)   
Bucci--I LOVE Better health Guy's website! I have learned tons from it and it is one of my "go-to" places for information. Scott really is a huge blessing to the Lyme/chronic illness community--I am grateful that he takes the time to share so much.

I will ask Dr. J about parasites tomorrow, I do not think Caity has been treated for them, although sometimes what he treats will cover various things.

Thank you for sharing---will look into this more!
www.caityboyd.blogspot.com

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1489
   Posted 4/10/2012 6:56 PM (GMT -6)   
Treehouse

Did you read about strongylides?

That's what they found in my stool test.
And hook worm and diatomebia fragialis.

Metagenix parasite stool test is expensive but
The best. Ask your doctor for it. Naturopaths have the
Kits.

I felt the best after parasite treatment but now I
Think they are back.
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,
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