This Is MS Multiple Sclerosis Community: Knowledge & Support

Still searching for answers in the blood...new results-
Jeff's SED rate is high, prothrombin time is quick, meaning his blood coagulates fast. His lymphs % is low, as well as WBCs.
What does all this mean? He has hypercoagulation. Sticky blood. Time to take some aspirin.

I was SURPRISED to learn he had never been tested for Hughes Syndrome, or antiphospholid syndrome, which is a differential diagnosis for MS. Could it be his neuro never considered this??? I assumed she had tested him already. It's only because I kept bugging his doc about the petechiae (blood spots) on his legs we got all these blood tests done.

I called his GP, and we're going directly to the lab for the APS test later this week.
Just a reminder to everyone to stay on our docs, get copies of your medical records and test results and keep being squeaky wheels.
For more info:
http://rheumatology.oxfordjournals.org/ ... 4/434#TBL1
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

hi cheer refresh my memory what jeff does daily for vitamin E and omega 3s?

Hey JL-
Daily 1000mg Carlson's fish oil/omega 3
400IU vitamin E
PLUS other anticoagulants including curcumin, garlic, ginger and ginko and an occasional aspirin-
Imagine how thick his blood would be without the supplements?!?
Like Elmer's glue....
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

hey cheer - I know you are big into the supps.... have you looked up any of the fibrin-reducing enzymes? I have no idea if they work but fibrin (which helps blood coagulate) also increases inflammation and inhibits myelin repair.

It's tricky though, because if blood is making it through the BBB and is leaking into the brain, you would think you'd want it thicker if anything. Seems like a catch-22

yep wow he would be SOLID.
do you have the mixed vit E with the four tocopherols and four tocotrienols? you could probably up the dosage for a week or so to give him a boost too. klenner advised 800IU vitamin E with each meal and at bed time. i followed that regimen in the short term and only saw good results. i do attribute the benefits more to the intense b-complex therapy at that time, but E was definitely part of the picture.

check this out:
http://cat.inist.fr/?aModele=afficheN&cpsidt=2324921


when it's not a marker of disease activity, in my book that means it's not low because of a disease process.
i'll look into this a bit further and post again

Hi rainer- thanks for the reminder on fibrin...
Jeff's taking serrapeptase, a fibrin reducing enzyme used to fight inflammation. We'll wait to see what his antiphospholipid test says. I just can't imagine how bad he'd be without his current supplement regimen.

He's been stable since diagnosis, no further progression or new lesions, but his blood tests have remained irregular. And he's had those spots on his legs. I asked his neuro about them when he was dx, and she said they had nothing to do with his MS. I'll keep you posted-
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

thanks, Jimmy. Appreciate it!

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

just FYI, don't know if it applies, but I have hypercoagulation as well, but not hughes syndrome. In my case it started after I began abx treatment and is viewed/diagnosed by my doctor as variant anti phospholipid syndrome.

The idea in this model is that the germs themselves cause the coagulation issues and treatment uncovers the issue. She feels that it in fact affirms the idea of bacteria at the base of chronic disease, like MS.

you can read about this theory of var APS here:
http://www.hemex.com/educational_info/coag_capsules.php

there are several papers on that page you can click and read.

I have done well with heparin, and my most recent coagulation test was in range while I have been taking nattokinase and serrapeptase daily instead so it seems to be settling down.

Please try salvia miltiorrhiza - I think you'll find this a very effective herb in the field of anti-coagulation in MS. I was recently tested for Hughes but the test was negative. But I am responding to salvia, which the Chinese call Dan Shen. There is loads on this herb which the Chinese use for Blood stasis. I'm taking 14grams a day.

_________________
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

Marie- Thanks for the Hemex link, very informative reading. I know you are a medical professional, and understand this more than me and most...so I appreciate the info. Have you found any symptom relief from the heparin treatment?

Alex- Thanks for the salvia advice, I know it depletes fibrin, and will look into adding it into the regimen. I went thru all of Jeff's supplements to make sure nothing in them would be creating this hypercoagulation situation, but I know he had the petechiae even before his first MS flare or any supplements.

Here's an interesting aside. Jeff's been out of town a week, and I sent him away with some green tea supplements, to take at lunch with his quercetin. We're always looking for natural energy enhancers to help fatigue. He said he felt great this week, had more energy and slept better. Last night, back home, there was an absence of flailing spasms....he slept like a baby. And his petechiae have faded since last week- no fresh ones.

ECEG is has been shown to improve blood flow, vessel health, and the body's response to insulin.

We'll see what further blood tests turn up.
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I'm not sure I can point to any specific symptom getting better, but my personal view of MS is that it is a complicated syndrome involving a number of problems and co factors, mainly bacterial and also viral overgrowth in an otherwise susceptible person. 'Susceptible' is clearly partly genetics, possibly stress and it appears some nutritional factors (like vitamin d) that all come together in a perfect storm to produce what we call MS in an individual.

Addressing MS in this view would require killing the germs and at the same time addressing the coagulation issues, viral co factors and any other issurs thst arise during treatment.

I have been on abx for 3 years now and have an unchanged, ne new lesions with no expansion of old ones, no inflammation MRI with no atrophy and no other sign of deterioration. All structures appears normal. I have progressed a little in that time in that my dropsy foot seems dropsier. I still use a cane.

We discovered the coagulation problem at the 2 year mark and had a really hard time getting it under control; took months. Many of my tests were so high they were off the charts. It is really difficult to imagine that if a patient did not address it, perhaps completely unaware of it, they would have other problems ie if Hughes can mimic MS and variant APS can happen, might that not do it as well?

This is definitely the fringe speculative end of chronic disease theory. As you read at the HEMEX link above there's a fair amount of literature on this, and my personal labs are there in black and white: I have a problem, but what that means for people with MS in general I would not want to say cause no one knows yet!

This much I do know; it is something I personally must address if I wish to be healthier than I am! How it has complicated and gotten in the way of my own attempts at healing is anyone's guess, but I'd think someone a fool to suggest it is not part of my problems....

And that brings me back to the idea MS is a syndrome with several co factors. Just taking abx has not reversed my symptoms as it has for some. coagulation obviously needs addressing for me, we'll see what happens now

Thanks for your thoughts, Marie. I really do appreciate them all.

Since Jeff is still considered clinically isolated with one real flare in March '07 and no progression or new lesions, I'm still hunting for answers. His neuro could not tell us if his lesions were "Three years or three weeks old." The bands in his spinal fluid gave her more clarity, he was dx MS and started copaxone. But there were many unanswered questions...one being his sky high liver enzymes, the other his petechiae up and down his shins and on his feet at dx. These, along with the lesions, were new. I couldn't understand how the docs could toss these things aside and say they were unrelated to his MS. It didn't make any sense.

Almost 2 years later, after begging for blood tests, we now start to see a picture of hypercoagulation emerging. I don't completely doubt Jeff's MS dx, I just wonder what else is contributing. Antibiotics gave him intracranial hypertension headaches, and he had to stop. He couldn't take the pain...it was excruciating. I'm counting on supplements to help, but there are still so many unknowns. His docs are bugged with me asking so many questions and requesting blood tests...don't think they'll give him the antiphospholipid test, since his ANA was negative. So I have to call and beg....again.

I just can't sit back and not do everything to try and understand what's going on....I had a very busy life, career, etc...but this has become my priority. Jeff appreciates all the time and effort, and he certainly appreciates stability in his health. I just wish it wasn't such a g/d'med mystery illness. I know you understand...
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Indeed I understand!

Perfectly put!

There is some interesting further reading on this link:
http://www.digitalnaturopath.com/cond/C546009.html
And one idea which especially intrigues me is that fibrin deposits provide a good hiding place for viruses or bacteria, both from the immune system and drug therapies. Therefore the idea is to begin removing the fibrin first to expose the pathogen, before administering antiviral or antibiotic drugs. If there are enough deposits for the pathogen to hide in, the suggestion is that it may enter a dormant state and only become active again when the fibrin is removed and it becomes vulnerable.
I wonder if this roller-coaster provides a believable scenario for a relapsing remitting disease course? Infection leads to fibrin deposits; enough fibrin leads to dormancy, fibrin removal leads to pathogen reactivation; reactivation leads to more deposits.
Fibrin has come up in the past as a therapeutic target in MS.
I have spent far too much of my life laying on the floor waiting for an ambulance to come, having fallen and sometimes injured myself. I've lost count of the number of times they praised my blood for being so sticky: perhaps not such a good thing after all,

_________________
Dom

Yes, the sticky blood is part of it and is noticeable, Dom. me too!

The theory is interesting and it really seems it could have merit. Having had MS for many years and watching it progress in spite of adequate anti inflammatory actions, in spite of good MRIs, and in spite of an initial benign course, I have progressed on schedule to SPMS dx'd this year. For me the answer is not more autoimmune approaches so the discovery that I have a lab verifiable problem was exciting, it fits a theory
that makes sense in my mind and gives me a way to continue to try to address this issue. I don't care how whacky it might sound to someone else, especially someone who believes the autoimmune theory, but the black and white fact of the lab abnormalities gives me hope I may be on to something. All I can do is try

The simple idea that MS might be something like a germ appears to potentially be fraught with all of these complicated co factors that require far more of your doctor that 'an antibiotics prescription'. Since this may be true, it may be a long time before all the ins and outs are understood and a genuinely, repeatably successful regimen is clearly illucidated.

meantime these are interesting discussions!