Beyond Avonex and Valtrex

[zjac020]

Scott...you most definitely have the right attitude. Let us know how you progress.

Take care,
zjac

[Scott1]

Day 15 and the tightness is my thoracic region is starting to abate. It's still there but better than before. Yesterday my Pilates people exercised me as though I had scoliosis and it helped. Hands are still numb and cold. Still taking the antibiotic and the rest of my normal regime. No fatigue but I am heartily fed up with the cold hands. Mobility in my legs is better but my hips don't enjoy being spread wide. Hip flexors have tightened up a lot through the weird postural movements I have been using. If you told me it was a dream and I am really on a polar expedition I would believe you.
I still expect a complete recovery.

Regards

[Anonymoose]

Hi scott1,

Sorry to read of the bumps in your road. We probably have different reasons for the cold hand sensation but I thought I'd offer up what keeps them at bay for me. I take a multi in the am and in the afternoon, when cold hands will show up if they are going to, I take b complex and they just go away. Maybe it's the niacin? Dunno. I'm not taking anything else and I'm doing awesome...feel more normal and healthy everyday (I think I'm slowly recovering from everything the valtrex knocked off kilter in me...nail moons are coming back with no major supplement or diet effort). I dare say I'm wonder woman again.

Hope all your annoyances clear up soon.

[Scott1]

Thanks Anonymoose,

I'll try niacin. It was very fashionable about 15 years ago for circulatory issues. I'd thought about it but with the L-arginine I imagined I had dilation covered. I suspect my problem is tied up with the constriction around the torso pinching something. It's a bl**dy nuisance. Otherwise I am fine.
I always thought you were wonder woman. What a difference when EBV is under control. As long you skin the cat is doesn't matter what way you did it. What I am learning is we can't just point the finger at one thing. I must have had these bacteria cruising around for some time till I stupidly activated this cycle. Now I can emphasise with people who symptoms seemed different to mine. Having this occurrence gives me confidence that I can nail down different parts: D, B12 and A are renal involving Megalin , vasodilation is ADMA and iNOS related, fatigue is EBV and peroxynitrite related, flare ups like this peptidoglycan related. Stick 'em all in a human and shake vigorously for decades and hey presto out comes MS. Demyelination can be triggered by many disturbances but MS myelin is immature at it's basic level and is susceptible because it's soft, unlike normal myelin after the age of 6.

I will be back to normal but I did learn a lot about other people during this and that is a gift.

Regards

[Anonymoose]

B's on their own, aside from b12, tend to bother me. Maybe trying a b-complex if niacin doesn't help will yield different results?

I've learned not to fully commit myself to any explanation for worsening unless I see positive results from directly addressing whatever issue I suspect. Did the steroids, antibiotics, or time lead to improvement? Was it a regular relapse, a bacterial flare, exercise induced injury, or other imbalance caused by your recent experiment? Are you still taking valtrex? How long did you take the product you suspect to have caused the new problems? Was it long enough to induce a bacterial flare that typically couldn't be quickly (the usual 7 or so days) whipped back into line once you stopped feeding it? Any of the usual non-neurological bacterial infection symptoms associated with your exacerbation?

Please keep pursuing other explanations...I worry about antibiotics. I did 3-4 months on CAP and it only served to make me a sickly airhead. And you've done so well for so long on your usual protocol. Bacteria didn't seem to play a part then. Why such a big problem now?! Another avenue you might try is nutrient infusions like the Meyers cocktail or high dose vitamin c. Once I've got this runaway general contractor and resulting mess taken care of, I'll be seeking out a modified Meyers cocktail. I'll let you know how it goes if I beat you to it.

Keep us posted and get well!

[Scott1]

The only thing different was N-acetyl-glucosamine. I wish i'd never touched it. It was about three weeks use but the last week I was already feeling dodgy. It is different than before. Years ago it was lameness, fatigue, double vision etc. This time its tight bands around me and cold hands. I am tired but not fatigued. It has become a drag on daily life.
I think everything else is ok.

It's like I'm locked in a loop.
I was off Valtrex when this happened.

What do B's on their own do to you?

[Anonymoose]

This too shall pass?...cuss and moan like a pirate until you get through it??

I don't remember exactly how I reacted to a single b vitamin. It was during my post rituxan low iron peak and that whole mess is kind of a blur. I'm sure details are posted somewhere on tims. It was b5 or b6 that didn't agree with me. The b's all work together so I now just assume it's best to take the complex.

If you're looking for far-fetched alternate explanations, how about this one? http://link.springer.com/article/10.102 ... 7980032042 Maybe the NAG increased autoreactive antibodies in vivo? Your usual bad guys started breeding like bunnies (yes, I know they don't breed but I like the visual...bunnies, not breeding bunnies) and set off a shock and awe attack on tissues...like a normal relapse. If that were the case, it would be super odd as NAG is alleged to possibly be helpful for autoimmune diseases. I wonder how much research has been done on NAG for AID. The good news would be that once the NAG cleared your system, your autoantibody levels should go back to normal, right? Yep...that's all based on a lot of assumptions...but it might be slightly relevant given your experience. It's something to tinker with anyway.

Being off the valtrex might contribute as well. You don't have tingly lips again do you? (That sounds totally weird without background info, doesn't it?)

Edit: Having had a re-read of the provided link, it seems increased affinity may be even more important than increased production, if this has anything to do with your exacerbation at all.

[Scott1]

Thank you for your interest. I agree, this is something like what is happening. The NAG is the only thing I can point at but I am also surprised. Hopefully you're right. Perhaps I should just get something to bludgeon the antibodies. The prednisolone was a low dose for a short time and may not have been enough.
Apart from the unending tightness and coldness I am ok. I am worn out by my hands and chest but I have no brain fog or proper fatigue to worry about. It just shows how multi layered this thing is.
I really do feel for people who have this plus fatigue and bowel disorders. It must feel like the end of everything has arrived.
Here's everything I am doing-
On waking
-Pomegranate juice and two probiotics
-500mg Valtrex
Breakfast
Greek style full fat yoghurt
3 eggs (because I like them)
At work
Carrot juice (upregulate RXR plus anti leaky gut)
Lunch
Whatever
Dinner
Whatever
Evening
teaspoon of L-Arginine
Before Bed
750mg coenzyme Q10
4x100mg magnesium plus 4x5mg zinc in 4 tablets

Plus now 250mg Zinnat at each meal time (antibiotic that works on peptidoglycans)

It worked like a treat till NAG was introduced.

Regards

[Anonymoose]

If you were to assume it was a relapse induced by the NAG (relapse does seem likely as you've suffered new symptoms that I doubt are associated with a new deficiency after just three weeks of NAG), maybe you should just follow your normal, successful regime and allow your body time for healing. My normal relapses that involved the hug and sensory issues took 8 weeks for full recovery (the second left some sensory damage). I dunno. I'd just hate to see you go through more trouble if you wind up trying something else that backfires on you. Get healthy first and then resume experiments or stop experimenting to enjoy the wonderful quality of life you've been able to maintain thus far?

Why you messin' with a good thing?! <scold>

[Scott1]

Point taken and wistfully understood.

I found this article ( https://www.bioscience.org/2003/v8/s/10 ... rame=2.htm )which is an interesting model although it's focussed an rheumatic fever "The evidence suggested that the peptidoglycan-polysaccharide complexes persisted in the tissues and acted to continually stimulate tissue injury and immune complex deposition. The persistence of antigen may be an important feature in disease in man. "

and
"Molecular mimicry between pathogen and host has been proposed as a mechanism for the development of autoimmune diseases. Evidence suggests that microorganisms contain proteins which are similar enough to host proteins that they can stimulate existing B and T cells to respond to self proteins. The loss of immune regulation during responses against microbial antigens may explain development of pathogenic B and T cell responses in autoimmune diseases associated with infections. The study of B and T cell responses against the group A streptococcal antigens, N-acetyl-glucosamine, M protein and the autoantigen cardiac myosin has led to a better understanding of how molecular mimicry may play a role in disease. Studies of human monoclonal antibodies, T cell responses and animal models in comparison with the immunopathology in the human disease has provided information about the steps leading to inflammatory heart disease in autoimmune post-streptococcal rheumatic carditis. The new data indicate that the steps in pathogenesis of rheumatic heart disease following group A streptococcal infection include the following events. First, the development of crossreactive autoantibodies against the group A streptococcal carbohydrate antigen N-acetyl-glucosamine and cardiac myosin. Second, these antibodies react with valvular endothelium which becomes inflamed with expression of vascular cell adhesion molecule-1 (VCAM-1). After this event, T cells, CD4+ and CD8+, infiltrate through the endothelium/endocardium into the valve which is an avascular structure. Aschoff bodies or granulomatous lesions may form containing macrophages and T cells underneath the endocardium. The T cells are responsive to streptococcal M protein antigen sequences. The valve becomes scarred with eventual neovascularization and progressive, chronic disease in the valve. In the host, the mimicking antigens cardiac myosin and laminin have been involved in the myocardium and valve, respectively. As in other autoimmune diseases, both environmental and genetic factors are involved in the development of rheumatic carditis and inflammatory heart disease, a result of mimicry between the group A streptococcus and heart."

Maybe I've been previously been infected and the residue left behind is enough if I add NAG.

I'm feeling a little better today. Yesterday was a shocker.

Regards

[Scott1]

OK Stop laughing, this is serious!

I have booked in to be tested for "bartonella henselae, Lyme serology, Western Blot looking specifically at suspected Borrelia garini, Babesiosis duncani and microti, IgG and IgM serology"

Of course authorities tell us there is no Lyme in Australia. so we will see.

Regards

[Anonymoose]

Not laughing. I'm all for gathering data.

I wonder if you could be tested for the anti-NAG antibodies. I'd read up on that a little and it made me think of the ccsvi valve abnormalities. I didn't have time to fully understand but isn't the cross reactivity with o-NAG, something the body changes NAG into? So, you are thinking the NAG may have allowed for proliferation of strep bacteria causing an immune reaction against those bacteria and that immune reaction happened to attack self-tissues as well? It could happen. Maybe you should test for strep as well?

I still keep coming back to the fact that you've done so well for 10+ years without messing with any bacterial infections. Was that just you being a lucky guy with lazy ms or was that because you were doing the right thing for your ms?

Glad you're starting to feel a bit better.

[Scott1]

Hi Anonymoose,

With my doctor I will have to go one step at a time. He's good but he is not quick!
The NAG antibodies is a good idea but I don't know what the test is. NAG is integral to a number of good and bad things. If it is building gram positive cell walls then the bug might be all you can look for. All I have ever tried to do is deal with facts not supposition. The current tests should be black and white so we will see.
I found a note on Bartonella that was useful (by an amateur) - http://www.benbrew.com/lb/lb.html . The issue is that bug plus probably others can thicken the walls of blood vessels which may overlap with CCSVI.
I'll get through this and be delighted to return to normal practices but I do need to understand what is happening. All the other things I have done have given me a wonderful buffer but this is something different. Meeting things head on is in my nature.

Regards

[Scott1]

I never, ever expected to see this!

http://jap.physiology.org/content/87/2/783

"These data indicate that peroxynitrite is capable of producing significant diaphragmatic contractile dysfunction. We speculate that peroxynitrite-mediated alterations may be responsible for much of the muscle dysfunction seen in pathophysiological conditions such as sepsis."
Perhaps I was lazy not my MS. I had not been taking Valtrex for almost a year as I thought I was ok. This fits with the view that superoxide from EBV infected B cells interacting with nitric oxide was a source of peroxynitrite and that radical can alter the behavior of muscles. I am still suspicious that NAG was the trigger but I haven't thought it out yet.
Starting to feel a lot better. The torso is freer but my hands are numb with cold still.

Regards

[Scott1]

This is my best guess of what is happening to me.

The Lymphatic system

I think I have triggered a response by my lymphatic system.
“The lymphatic system is part of the circulatory system, comprising a network of lymphatic vessels that carry a clear fluid called lymph directionally towards the heart. Roughly 17 litres of the filtered plasma get reabsorbed directly into the blood vessels, while the remaining 3 litres are left behind in the interstitial fluid. One of the main functions of the lymph system is to provide an accessory route for these excess 3 litres per day to get returned to the blood. The other main function is that of defense in the immune system. Lymph is very similar to blood plasma but contains lymphocytes and other white blood cells. It also contains waste products and debris of cells together with bacteria and protein. Associated organs composed of lymphoid tissue are the sites of lymphocyte production. Lymphocytes are concentrated in the lymph nodes. The spleen and the thymus are also lymphoid organs of the immune system. The tonsils are lymphoid organs that are also associated with the digestive system. Lymphoid tissues contain lymphocytes, and also contain other types of cells for support.[3] The system also includes all the structures dedicated to the circulation and production of lymphocytes (the primary cellular component of lymph), which also includes the bone marrow, and the lymphoid tissue associated with the digestive system”. [(http://en.wikipedia.org/wiki/Lymphatic_system )
“There are 600 to 700 lymph nodes in the human body that filter the lymph before it returns to the circulatory system. When bacteria are recognized in the lymph fluid, the lymph nodes make more infection-fighting white blood cells, which can cause swelling. The swollen nodes can sometimes be felt in the neck, underarms and groin.
Unlike blood, which flows throughout the body in a continue loop, lymph flows in only one direction — upward toward the neck — within its own system. It flows into the venous blood stream through the subclavien veins, which are located on either sides of the neck near the collarbones.
Plasma leaves the cells once it has delivered its nutrients and removed debris. Most of this fluid returns to the venous circulation through the venules and continues as venous blood. The remainder becomes lymph.
There are two drainage areas that make up the lymphatic system. The right drainage area handles the right arm and chest. The left drainage area clears all of the other areas of the body, including both legs, the lower trunk, the upper left portion of the chest, and the left arm.” (http://www.livescience.com/26983-lymphatic-system.html)
Here is a diagram of the system. (http://www.livescience.com/38545-how-th ... aphic.html)
If I had to run my fingers over the front of me that felt affected it would follow the path of the green lines and include the spleen. Earlier it was so diffuse I couldn’t have made a distinction as I felt so overwhelmed but if you can see it that’s where I felt it.