Insights to CCSVI, Infections and degenerative diseases.

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

Re: Insights to CCSVI, Infections and degenerative diseases.

Postby vesta » Sun May 19, 2013 7:19 am

Hello NZer:
Thanks for your comments. You are right, I doubtless do have an infection issue, though I will probably try Homeopathy to deal with it, in the first instance. I'll write about it later and look more closely at your work next week, I have guests now and am overstretched.
Thanks again for the input and hefty research.
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Re: Insights to CCSVI, Infections and degenerative diseases.

Postby Anonymoose » Sun May 19, 2013 10:15 am

NZer1 wrote:Thanks 'moose for making a clearer picture.
I would like to ask why you stopped the ABx treatment, if you were having side effects, whether they were detox issues, herx issues, endo-toxin issues or secondary porphyria issues they all indicate an issue with bacterial infection.
Three pulses, depending of course on the protocol ABx and method is not very long imo and if you had done bloods at that time a quality Lab would have been good indications for any of the bacterial and viral infection antigens because the die off would have stirred the immune response.
If it was me I would have continued and learned more from others who were on the protocol and or the experts in protocol such as David Wheldon, if there was hope from a reaction or side effects I would have jumped at it!

The fluid leakage from nose and ears does ring a bell with me as well and I thought it was due to CSF pressure build up, I may be wrong as well.

Has your disease profile been sporadic episodes or steady progression?

The two forms seem to respond to different treatment approaches and have different lesion expression which I think gives clues of what to look for from a history angle. You can sometimes find injury history, or stress history in recent past and if there is infection history over life times then that has a profile as well.

1. If there is a positive response to using steroids it points to a format in the disease expression. If there is nil or a negative reaction it is hinting at a form of disease profile.
2. If diet makes a difference then looking at the life time of diet habits and life events can be educational.
3. The onset of symptoms whether they are grouped by sensory or motor nerve changes is a lead.
4. The disability progress as it occurs around the body for instance motor, sensory, cognitive, bladder/bowel, mobility are hinting at regions of the CNS or the Spine that are being damaged and the timing of progression gives clues of treatment possibilities.
5. If there is responses from AO Chiropractic treatments over time (aka more than 5 treatments) it is another positive lead.
6. Having Doppler Ultrasound of the neck veins will give a 'glimpse' of blood flows, not only the Zamboni protocol also the flow analysis calculations.
7. Having CSF cine flow tests will give insights to general brain and cord health.
8. Upright MRI will be very, very helpful for quality assessments, especially if it is through Dr Rosa in Albany USA and is CSF flows as well as MRI.

I find that now that there has been some access to historic studies and PwMS are using the Internet to assess research there have been big advances and Hope that hasn't been committed to by Specialists in the past.
The realisation that the Disease Modifying Drug (DMD) approach in MS doesn't do anything positive for PwMS (but to Drug Company Investors it's a saviour,) and that piece of insight is a step forward by breaking the mould of silence that had occurred.

;)
Nigel

Heya Nzer,
I only tried CAP because it was the only 'harmless' possibility for treatment out there (I now realize AO adjustment by a qualified practitioner is another good option). I have RRMS and aside from my two big flares, my symptoms were never so bad as they were on CAP. I don't really buy into the 'if it hurts, it's a good thing' philosophy. I think the antibiotic fallout is harmful.

Then I stumbled upon the hpa-axis dysregulation aspect (via investigation of modified citrus pectin which helped immensely whilst I was on CAP). I had more faith in the hpa axis angle so I stopped CAP and switched to clonidine. I am still working the same angle with the fenofibrate operating on the assumption that the cytokines are triggering CRH release and hpa-axis activation. The fenofibrate inhibits some of the triggering cytokines in MS.

I definitely fall into the stress category but I also have a degenerated disc in my lower back...maybe more now but they don't bother me anymore (perhaps because I've stopped being stupid with my back).

I *think* I've managed to stop the leakiness in my nose by drinking hibiscus tea for it's diuretic effect. My ears are still weeping a bit at night though. After reading for days on CSF leak, I've decided I'm going to try to get it to stop and then look for a qualified AO practitioner to see if a misalignment is causing high CSF pressure resulting in spontaneous intracranial hypertension and resulting CSF leak. As usual, I'm working on a lot of assumptions but I'm afraid of the invasive and potentially detrimental tests and treatments I may be forced to pursue if I try to go the 'official' way.

As for CAP stopping a CSF leak, it's not likely. Doxy and Mino are known to cause or exacerbate IIH. Puzzling. Maybe what I have isn't a CSF leak afterall. But that makes me think that maybe those who are helped by CAP have low CSF which can cause chiari malformation and MS like symptoms...and the antiobiotics cause the CSF to build back up and reverse the malformation? Just another of my random thoughts.

So...that took things way off topic, huh? Back to your regularly scheduled program. :)
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Re: Insights to CCSVI, Infections and degenerative diseases.

Postby NZer1 » Sun May 19, 2013 1:42 pm

'Moose I DON'T see anywhere that the ABx increase in symptoms is anything but a positive that there are bacterial issues and the treatment is creating side effects due to things such as fibrin build up, toxin release, endo-toxin creation from die off, de-tox function issues etc.

People are frightened of ABx especially singular treatments that are taken for ALL the wrong reasons and that has caused a problem for some people with bacterial issues because of primary issues of diet creating a cascade of issues through Life, whether in a child or adult the issues are often started in the womb and are in the environment so we are using a shape stick to push the proverbial!

An other thought that occurred from reading your approach 'Moose is that the body takes time to adjust when we change things, doesn't matter whether it is diet or mindfullness it all takes months and often years to change a symptomatic disease.
The I want it now approach of Modern times doesn't happen in Health issues of de-generation.

Take a pill and get back to work is a pipe dream for PwMS and makes it harder to see what works and what doesn't if sporadic concepts are followed, then dropped before they have time to establish a wellbeing trend that can be understood and on then to the next hope item!

;)
Nigel

Another avenue of thought for those wanting to understand the bacterial involvement in MS and de-generative diseases, bio-films and fibrin protection against detection! Very long article so be prepared! Full of insights!

**Biofilm and MS?**

"Those with MS or ALS type symptoms appear to have huge biofilm issues. Some people can have such a huge problem with biofilm it's said strings can come out when donating blood. Course these guys are incredibly ill though. All my research really goes towards MS, ALS, Alzheimer's, Lyme, Autism, and similar. and they are all very connected with a biofilm problem and with detox pathways being overloaded and/or faulty. Hair loss just happens to overlap with biofilm problems like the above issues. "
http://immortalhair.forumandco.com/t693 ... d-biofilms
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Re: Insights to CCSVI, Infections and degenerative diseases.

Postby Anonymoose » Sun May 19, 2013 2:44 pm

NZer1 wrote:'Moose I DON'T see anywhere that the ABx increase in symptoms is anything but a positive that there are bacterial issues and the treatment is creating side effects due to things such as fibrin build up, toxin release, endo-toxin creation from die off, de-tox function issues etc.

People are frightened of ABx especially singular treatments that are taken for ALL the wrong reasons and that has caused a problem for some people with bacterial issues because of primary issues of diet creating a cascade of issues through Life, whether in a child or adult the issues are often started in the womb and are in the environment so we are using a shape stick to push the proverbial!

An other thought that occurred from reading your approach 'Moose is that the body takes time to adjust when we change things, doesn't matter whether it is diet or mindfullness it all takes months and often years to change a symptomatic disease.
The I want it now approach of Modern times doesn't happen in Health issues of de-generation.

Take a pill and get back to work is a pipe dream for PwMS and makes it harder to see what works and what doesn't if sporadic concepts are followed, then dropped before they have time to establish a wellbeing trend that can be understood and on then to the next hope item!

;)
Nigel

Another avenue of thought for those wanting to understand the bacterial involvement in MS and de-generative diseases, bio-films and fibrin protection against detection! Very long article so be prepared! Full of insights!

**Biofilm and MS?**

"Those with MS or ALS type symptoms appear to have huge biofilm issues. Some people can have such a huge problem with biofilm it's said strings can come out when donating blood. Course these guys are incredibly ill though. All my research really goes towards MS, ALS, Alzheimer's, Lyme, Autism, and similar. and they are all very connected with a biofilm problem and with detox pathways being overloaded and/or faulty. Hair loss just happens to overlap with biofilm problems like the above issues. "
http://immortalhair.forumandco.com/t693 ... d-biofilms

NZer,
Your philosophy that it takes months or years to feel improvement does not jive with successful ccsvi PTA or my own experience with clonidine (which I had to quit) or fenofibrate (which I will take as long as it works and doesn't cause other problems like the clonidine did). I might add some ao work to it though.

People who have successful PTA improve instantly without pain. I improved almost instantly without pain on both clonidine and fenofibrate. Pain is not required for recovery.

Lets agree to disagree on the CAP thing and hope we both (all) find success. :)
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