I have Lyme, not MS, yet I have CCSVI. My Video pics Inside

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

Did you have a Life Traumatic Event or Serious Stress just Prior to your Illness?

Yes
27
79%
No
7
21%
 
Total votes : 34

Re: ccsvi

Postby Liberation » Mon Apr 25, 2011 10:01 am

blossom wrote:i forgot something just my thoughts-but say you have iron deposits and they are like a feeding frenzy attraction for bacteria viruses etc. it would make sence to do whatever you can to get them out of the body. i'm sure certain cases there would be permanent damage but i'd think better out of the body and see what could heal.



How can we get the excess iron out of the body? It has already been indicated that there is some association of hemochromatosis with MS severity.[/b]
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Re: ccsvi

Postby PCakes » Mon Apr 25, 2011 10:24 am

Liberation wrote:
blossom wrote:i forgot something just my thoughts-but say you have iron deposits and they are like a feeding frenzy attraction for bacteria viruses etc. it would make sence to do whatever you can to get them out of the body. i'm sure certain cases there would be permanent damage but i'd think better out of the body and see what could heal.



How can we get the excess iron out of the body? It has already been indicated that there is some association of hemochromatosis with MS severity.[/b]


is there anything that is 'not' associated with MS? just how big is this box? 8O sorry, back to business.
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Re: Lyme , MS related to Pre-existing Major Stress in Life

Postby LymeNurse » Mon Apr 25, 2011 10:25 am

I put the poll up in the thread to confirm what I already knew. It is well accepted that Stress can bring on both disease and illness. I have ran this poll on several Lyme sites and I always get over 90% for the Stress preceding the Lyme diagnosis.

Lyme is everywhere. Perhaps if you lived on the moon, you might not be exposed. Forget Lyme testing. Their are over 29 known strains of Lyme, yet only 1 tested for through both Lab Corp and Quest. False negatives are all over the place. I interviewed Dr. Willy Burdorfer who discovered the Lyme spirochete. The audio interview is on youtube for those that want to listen. Even he acknowledges the testing is terrible and that Lyme is everywhere, even in New Zealand. To say otherwise is only fooling yourself.

So, what I have found is that our Immune systems appear to keep the disease in check until a major life stressful event comes along. The immune system goes on tilt and lets the "cat out of the bag". Think of your immune system like ground forces fighting off the enemy. Stress is like a B10 bomber coming along wiping out your ground forces allowing the enemy to come in and invade. So, getting bit by a dear tick doesn't make you sick, it merely exposes you to the inactive form of Lyme being kept in check by your immune system, specifically, your T-Lymphcytes.

The Autoimmune theory for MS is hard to buy. The body just doesn't attack itself. My own personal theory is that Steroids actually keep your MS in check b/c Lyme toxins cause swelling in the brain. When you compress nerves from swelling, you get symptoms. With CCSVI, things just get worse b/c you now have blood flow issues going on simultaneously.

The poster who took Colloidal silver, perhaps wasn't taking enough. When I begin treatment again, I will drink a quart/day of 15ppm. I make my own. Google "Silverpuppy" and you can find the guy that sells Colloidal Silver generators. CS has been used for hundreds of years to fight off disease. I won't get into that here, you can read up on it yourself.

When you've been dealing with MS for so long, I know it's hard to fathom something else could be causing your symptoms. I won't try and convince anyone otherwise, but I'm here to answer questions, give you my thoughts, etc.

I came to this board b/c my MRV shows I have CCSVI and I was looking for answers, support, etc. I want this done right. I'm hearing so many ways the procedure can be done.

So, while I'm here, I'm throwing the Lyme stuff your way to consider. Those with open minds will perhaps see that I am in fact correct. Others will stay on their current treatments. I take Lyme further then MS. I also believe Lyme= Parkinsons, Autism, CFS, FMS/ME, ALS, etc.

Dr.'s throw around these diagnosis like candy. Michael J. Fox had Lyme just before he got Parkinsons. Kind of strange don't you think. Check out Lymenet.org . Go there and post your symptoms. See what the others say. Don't even say you have MS. Leave that out and I guarantee you the people there will tell you it sure sounds like Lyme.

There is no other bacteria that can cause these symptoms but the Spirochete. It's shaped like a spiral spaghetti noodle, moves in a drill bit manner and can penetrate any tissue in the body. It can mutate into pleomorphic states which evade both the immune system and antibiotics, which makes it so difficult to eradicate. This is why people stay on antibiotics for years. There is no other bacteria like it. Give it a cell wall like most bacteria and it would be easier to get at.

Again, go to youtube and type in "Spirochet microscope". You will these suckers under the scope. They are so small, it takes 10,000 power darkfield microscopy to see. They split in half by mitosis and after a while the number become exponential. There is a natural life cycle of about 28 days, but perhaps 5 or more new spirochites arise from a single one before it dies off, thus the progression of the illness and symptoms.

Hope this helps at least one person...

Gary
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chronic illness

Postby Selmahope » Mon Apr 25, 2011 10:32 am

I believe chronic illness is more complex than one infection i.e lyme. I test positive for alot of things- h.plyori, parasites, heavy metals, cpn, lyme (according to lyme md's and igenex) etc etc.I'm also chemically sensitive. I think it is very simplistic to say it is all lyme disease or all cpn. It is likely a combination of many things and takes a multi-faceted approach to heal . There are many healing stories out there reversing illness-some from diet, some from meditation, some from healing prayer, some from antibiotics. I can't believe that lyme is the source of all MS, ALS, parkinson's, cfs, fibroymaglia etc. I think that it is not black and white. Lyme maybe a factor-but there is something else going on with the epidemic of autoimmune and progressive disease that attacks many more than women than men.
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Postby Liberation » Mon Apr 25, 2011 10:40 am

I do not think that Lyme would be equal to MS, but I know that Lyme can have the same symptoms as MS does. This is why I went for testing. The specialist just confirmed what I thought that these symptoms could be the result of Lyme. The problem is that testing is very unreliable, it can either give false positive or false negative result. So, we are back to square one.
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Postby LymeNurse » Mon Apr 25, 2011 10:42 am

The problem is that is doesn't matter whether it is Lyme or not b/c it is so difficult to eradicate. Until science does their job, much of this will just be theory. I can't prove anything.

I only know that I have severe Herxheimer reactions when I try and treat my case. The Herxheimer reaction was first seen in Syphilis and is a direct result of toxin die off from the other Spirochetal disease out there known to man.

So, this confirms my illness. The ticks carry parasites and we do have previous exposure to other illnesses prior to getting sick. Anything can activate when the immune system is compromised. Again, I don't buy that our bodies are attacking themselves.

We weren't built that way. Our bodies do everything to maintain homeostasis. The simple fact that you are ill is your body's response to trying to fight off illness. This is the way I see it.

As you can see, we all have our own theories about what is what. I hope one day Science and Medicine get it together if not for us, then for our children.

Gary
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Postby PCakes » Mon Apr 25, 2011 12:18 pm

LymeNurse wrote: I hope one day Science and Medicine get it together if not for us, then for our children.

Gary


hear hear
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Postby Bethr » Mon Apr 25, 2011 1:46 pm

Hey LymeNurse, i am hearing you, and listening, I just need questions answered. The medical opinion I looked at at Dermnet, which is quite a respected site, said Lyme had never been contracted in NZ.
We are pretty isolated, so why wouldn't i believe that?

I thought Lyme was one thiing, not over twenty.
I am very interested in this angle, as I've had some very strange experiences in the last few years with my immune system and T-lymphocytes , since I found out I had been iron-overloaded.

The body and foreign invaders fight it out for resources in your body.
The body responded to invaders by hiding iron away in storage areas, decreasing absorption etc etc, it's a whole new science.

I had some rather bizarre T-lymphocyte reactions as I had the iron bled down last year. I got a throat infection the day of my phlebotomy and went on antibiotics. I ached all over and then it culminated in an outbreak of T-lymphocytes breaking through my skin (PLEVA) in the form of blisters, that then turned brown like little liver spots. All over my arms and legs. PLEVA is a rare skin disorder of unknown origin. It honestly felt like something has escaped my body, just broke out my skin and ran :lol: Then it all cleared up as quick as it came. Had it about six weeks.

Felt pretty great once that episode was over.
The last six months has been pretty great, just start to get a
bit fatigued and stiff joints when phlebotomy is due.

(I have a hemochromatosis gene C282Y, just one)

Have a look at some of Dr. Maria De Sousa's work, she just such a clever lady, and is just starting to do research on iron and the brain and the immune system.
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Postby LymeNurse » Mon Apr 25, 2011 3:20 pm

I assume your having Therapeutic Phlebotomy in your home every so often to treat this. The brown marks can be the iron coming to the skin surface. I'm sure you know this already.
<shortened url>

The above article mentions New Zealand for Lyme. I found that on a quick google search. I assure you it's everywhere. They are finding it in breast milk. Mothers are giving it to their children this way. An infected mother can even pass it on through the Placenta.

If you traveled outside of New Zealand, you could have gotten it that way. If your family did and were just carriers without active disease, this would yet be another way.

I'm telling you, it's everywhere. Some think it's a conspiracy that nothing is being done about it. Everything is about money in the U.S. and other countries around the world.

Look at this Comet headed this way. There is alot of talk about how we are in big trouble from Solar Flares that many Scientists are predicting. Even so, the government hasn't said a word for us to prepare for this if it is true. My point is even if something bad is coming or here, were not gonna have much done.

Look at this CCSVI topic. There is an obvious physical defect in the veins. People are having incredible results, yet Neurologists are looking the other way. To this day, I havn't even heard what their position is for not supporting the procedure.

The Re-Stenosis is the kink to be worked out along with Post procedure Thrombosis. For some, this procedure may mean being able to take a Vacation for a few months that they could have never done the rest of their life. To debate something that is black and white is beyond beyond :-)

It just further validates how screwed up our society is and we are caught up in it all. Perhaps the end of the world is coming and the Mayins were correct. It appears self destruction is inevitable.

I was never big into Philosophy, but how can you avoid it with all the cover up and money scandals going on right in front of our faces.

With Lyme, the IDSA said there was no such thing as Chronic Lyme. Well, regular MD's were getting sick and that's where Lyme Literate Dr.'s came from.

Now, CCSVI, something that you can't debate and I'm seeing the same thing with Neurologists. When will all the craziness end ?
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Postby Bethr » Mon Apr 25, 2011 4:15 pm

I'll look into it Lymenurse.
I already had hyperpigmentation from iron overload prior to getting the PLEVA outbreak. My arms look like I have liver disease, but it seems to be fading now out as the iron levels go down.
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Postby Liberation » Tue Apr 26, 2011 2:12 am

LymeNurse wrote: I'm telling you, it's everywhere. Some think it's a conspiracy that nothing is being done about it. Everything is about money in the U.S. and other countries around the world.

Look at this Comet headed this way. There is alot of talk about how we are in big trouble from Solar Flares that many Scientists are predicting. Even so, the government hasn't said a word for us to prepare for this if it is true. My point is even if something bad is coming or here, were not gonna have much done.


Lymenurse, I really respect what you are saying and I am sure there is some truth in it, but I think we sould not think always that we are part of a conspiracy if things do not go the way we would like it. I am very much dissatisfied with the current situation, but I do not think it is due to a conspiracy, rather it is the result of many other things, like a US president (GWB) who banned stem cell research, states who spend billions of dollars on weapons and not on finding cure for dibilitating illnesses, etc.

If we can not identify Lyme in many patients, then how can we say that they got Lyme? I am sure that there are lots of viruses that we do not know at the moment and they are behind certain illnesses.
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Postby LymeNurse » Tue Apr 26, 2011 5:40 am

@Liberation,

With Re: to Lyme, people will suffer so long as there is no research for Lyme. The Infectious Disease Society of Americas position is that there is no such thing as Chronic Lyme. Therefore, there will be no research until this position changes.

I interviewed Dr. Willy Burgdorfer not long ago. The Audio is up on youtube. The interview was over an hour, but he clearly stated that Lyme can be Chronic, there are 29 known strains known to man, yet conventional Labs only test for one strain, he spoke of Politics, Wallets, etc. BTW, Dr. Burgdorfer is an elderly man now, but he accidentally discovered the Lyme Spirochete.

If Lyme is linked to MS and other Chronic illness as I and so many others out there highly suspect, then everyone suffers.

With such a debate, you'd think someone would pull out a darkfield microscope and look at a few tissue samples from us sick folks to put all of this to rest. If you don't own Darkfield, you will never be ever to see this. These microscope are in the 10K dollar range, so not many own them, not even many Universities. I called everywhere I could think of and asked for direct visualization of my blood, but I could get no one to do this.

Antibody testing is useless if the immune system has crashed.

So, maybe not a true conspiracy. I said "others" talk about conspiracy. I'm not quite there yet. I can tell you, there are people taking money out there high up when it comes to Big Pharma. It's everywhere. Funny b/c, I was sent a documentary and asked to host it on my Youtube site about how Big Pharma and Government, and the World of Psychiatry have conspired on this entire Pill fix for Mental Illness. Take a look if you want: http://www.youtube.com/watch?v=1OB-AzVBj3E
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ccsvi

Postby blossom » Tue Apr 26, 2011 11:15 am

lymesnurse, i pretty much agree with your thoughts. and sadly and scarey and sickening is the fact that lymes is not alone in the higher powers of greed and coverups. but lymes alone is catastrophic. we are only seeing the tip of the iceburg.
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I have Lyme too... I bought that for years

Postby daytrader » Tue Apr 26, 2011 6:57 pm

If you have Lyme or more specifically neuroborreliosis and the IV Rocephin is not working........I did copaxone also as a precaution because they just couldn't tell for sure. I also did campath and I have had 4 ccsvi angiogram procedures. Now I have a totally blocked left ijv from the ccsvi attempts and a totally blocked left subclavian from the picc line ....fun, fun

Just my two cents worth. I need a bypass of the ijv and am searching the country's best facility's to get one. The arm will just always swell and hurt all the time. Too much damage to safely repair as of yet.
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Postby LymeNurse » Tue Apr 26, 2011 7:19 pm

@Daytrader,

Your the perfect person to ask about blood thinners. Are you on any. Have you looked into Boluoke ?

I won't repost what I wrote in the other thread I started about Antifibrinolytics, but I'd be working real close with a Dr. to address this issue.

I use to place PICC lines for a living. I you clotted up in your subclavian from a PICC line, I would think you have Hypercoagulation issues.

I've never seen a subclavian vein go from a PICC line in my entire career.

Please read my other thread if you have not seen it already.

Best,

Gary
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