Could this be an indicator that I have progressiveMS not RR?

[zjac020]

Hi all,

Been a while since i posted. some of you may remeber that i had my first relapse back in May 2013 (weak right side of body, most noticeably drop right foot). Lasted ten days. They then found old lesions on the brain (approx 7-8) and one active lesion on the cervical spine that explained the physical sympoms I was having.

I recovered well, except hat when my body temperatur rises (sauna, hot bath, intense exercise) the weakness on the right hand side and the dropped foot return temporarily. Balance is slightly worse too (but something only i notice, its very slight).

I made lots of changes straight away. Radically improved diet, took up regular exercise, LDN, and a host of supplments incluiding quite a lot of vitamin D.

In may this year i had CCSVI in Rome (Brain Flow Team, Dr Lupatelli). Given that I have very few constant symptoms its hard to evaluate any improvements. 6 days after the operation both the wife and i noticed that I was able to walk for a ocnsiderable more distance before the dropped foot kicked in. I had a couple of drinks (alcoholic) before setting out to walk so it could have been due to this? Or maybe placebo...but either way short lived. I do notice that I now remember some dreams once in a while.

Issue now is that im noticing that the right leg when in the fully extended or fully bent position for a few minutes, becomes stiff and initially slightly painful uppon flexing. after a few flexes the pain quickly subsides. I first noticed this about 4-6 weeks ago.

Assuming I have no change in MRIs and that this isnt a relapse, could this mean i may actually have a progressive type of MS? Ill be asking the neuro in 10 days when i see him (but will omit the fact that ive had ccsvi), but would appreciate some feedback from this great group as always.

Thanks,
zjac

[Scott1]

Hi,

I wont pass any comment on your operation. I can see why it might help and I can see why it might not. Nonetheless, if it worked it can't automatically undo damage that's happened so you need to deal with that. If it didn't stop progression then the issue is what sort of supplements and exercises are you employing.
If we just concentrate on the leg, I would try exercises that strengthen and stretch the psoas muscle as a priority. You will need to get advice on how to do this and its going to take time and be frustrating. You also need to exercise the calf and ankle. Again you will need an exercise physiologist or equivalent. Lastly you need to lengthen and strengthen the hamstrings. My preference is Pilates using a reformer as a minimum. Do not join a large mat class and think that's Pilates. You will need a small class and someone who can analyze your technique. I've been in gyms and all I see is people confusing size and repetition with fitness and stamina.
Your operation may have offered you a window, don't think of it as a door to a normal life. If you gained some relief then use it as a chance to improve your overall health and fitness.
I don't think you have drifted into a progressive form of MS. Don't plan to go that way.

Regards

[zjac020]

HI Scott,

Thanks for replying, I appreciate it. I honestly think that the "damage" left by the first relapse will only go away if the mielin is repaired. Havent seen much evidence of lesiones disappearing with CCSVI, I have seen it in other cases though (with high dose vitamin D, heavy metal chelation and Candida, it depends on the person though, obviously).

I did the CCSVI from a preventative point of view, and always assumed that it wouldn help with the leg (which as I say is only a problem under a temporary exhacerbation from a noticeable increase in body temp).

I take lots of supplements, and started taking soon after diagnosis. My vitamin D levels were very high (250ng i think, I was taking 20.000IUs daily for a few months, up from my usual 10.000IUS), and i took in more calcium lately than one should when taking so much vitamin D, I thought the pain might have been down to that, but i now doubt it. I havent been taking zinc for quite a while, although I do still take magnesium, that balance should be corrected. Other than that I take omega 3, NAC, NAG, Choline, Taurine, cardioaspirin (part of CCSVI), MitoQ, Coenzyme Q10, Ginko Biloba, probiotics, Vitamin E (400IUs I believe), vitamin K, vitamin C, methyl B6, B12 and one other (i have the MTHFR mutation). I also chelated heavy metals on the Cutler protocol with DMSA and ALA, but I can definately rule that out due to the timing of when the pain started and when I last was chelating.

I actually do machine pilates (refomer and cadillac) once a week in a small group,but i should probably tell them about this new problem to see what they make of it. Other than that I swim once a week for an hour, usually go out for a 30min run, and then eiher gym or 1.5hr bike ride. Ive been doing this exercise routine since diagnosis so again, cant really pinpoint it to lack of exercise, but maybe now I need to focus more on stretching etc to help with this new issue.

Thanks again Scott.

[Scott1]

Hi,

Well done on having a go. You probably take more stuff than I would but it's but its not for me to judge. I actually don't think about Vitamin D (never) as I can't really decide about supplementation with D3. My preference has been to upregulate the RXR receptor by taking carrot juice as the Vitamin D receptor is a thyroid like receptor that is governed RXR in a complex. I tend to think of it like VDR is a light in your house whilst RXR is the main switch out in the garage. You can change the light bulb, switch the light to the on position but it doesn't matter if the mains are turned off.
MitoQ and CoQ10 is doubling up because it's the same thing except the MitoQ people say their electrons spin the other way.
I am a big believer in EBV infection having a major role so I still take Valacyclovir each day and find it helps. The issue is dosage and coinfections which seem to cause Herximer responses for some. Maybe you could check for EBV, mycoplasmas, etc and treat accordingly.
I love the fact you do Pilates. For the leg, ask them for a pattern of exercises called jumping and any ballet exercises for flexion in the foot. Slow and perfect is the right way rather than quick and wrong!
The other thing that happened to me is I started to "claw" the three middle toes so I started to roll my foot to the side to shift the impact on them. The effect was my knee didn't track truly which I fixed by putting one of those foam things the girls use between their toes when they paint their nails. It stopped me clawing and the exercises were better. Ask your instructors to work your leg concentrically.
My messy "Beyond Avonex and Valtrex" note covers my thinking.

Regards

[Scott1]

Hi,

I just reread your note on what you are taking. Can I urge you to reconsider NAG. I would prefer you didn't touch it.
I blame it for my relapse last year and the thinking behind that starts here http://www.thisisms.com/forum/regimens- ... 19-30.html from Saturday 13th September 2014.

Regards

[zjac020]

Ive read your comments on NAG before, but I honestly believe MS is underlyingly very different for everybody. SUpplements that help or hinder some, dont do anything for anybody else. Lots have found relief from NAG, others nothing, and other such as yourself im sure need to steer clear of it. Im actually just finishing some I had, its not usually one of my core supplements. However lately i have been noticing a slight pain in the right chest. Like a pin point pain. Intermittent and not constante. Doesnt seem to be the heart,the pain is slightly further out. It could be muscular/intercostal? Similarly ive noticed that the leg is tighter under the knee when fully flexed/bent as mentioned. Maybe the NAG is part of the problem here? The chest paist coincided with me restarting chelation rounds (Andy Cutlers protocol), it could also be due to mercury redistribution.

I did a hole host of extensive blood work as part of LYme testing. I had EBV antibodies (more than happy to share results with you if you are interested), i think they also tested for mycoplasm, herpes, varicela zoster. NO IgM, several IGG and I dont remember any being alarminly high though.

Have never heard of Valacyclovir, but from what I can see its an actually medication/drug, generally im not to keen on those (or DMDs). Nevertheless, how have you found that it helps? I could get hold of some probably. As you checking its effect based on your bloodwork too?

What I have noticed is a slight pin-point type pain in my chest. Its intermittent when it does happen, and isnt constant

[Scott1]

I definitely don't like NAG. Biggest mistake I ever made was to take it. It is too closely related to peptidoglycan fragments for my liking.
Valacyclovir (Valtrex is a brand name) gets a mention by Michael Pender as one method of dealing with EBV infection. It will not get rid of EBV but it does stop replication.
Regards

[zjac020]

But do you control your EBG IGG antibody levels? I dont disagree that EBV is definately involved in MS, Im just wondering whether its just one of so many other thigns that MAY help and so there is no real harm in taking it. I prefer to think that things like LDN and Vitamin D which have been clearly demostrated to help regulate the immune system also help keep EBV in check?

Its just hard knowing where to stop with so many things that may help. I prioritise those that have either evidence amongst MSers, thats what I was asking about what your improvements were on Valtrex.

[Scott1]

Hi,

Before we discuss Valtrex, we need to understand what an EBV infection does. Pender wrote a good review last October (http://www.nature.com/cti/journal/v3/n1 ... 1425a.html ) which highlighted many of the problems.
The real issue is it is a herpes family virus so it highjacks the machinery of the cell to ensure its own survival. Consequently, if you are infected it will be forever. EBV is endemic in the human population so the question is why is it a problem for some people and not others? That question has no definitive answer.
What is known is an EBV infected B cell produces prolific amounts of superoxide. In a normal, healthy system superoxide would be used to fight bacterial infection. In an EBV overloaded system we produce an excess of this radical. On it's own it would just add to the aging process.
If superoxide reacts with nitric oxide it will create an extremely potent radical called peroxynitrite which interferes with the lipids and normal cycles of glycolysis resulting in impaired production of ATP. In turn, this affects our ability to make energy.
Nitric oxide relies on nitric oxide synthase. Nitric oxide synthase is either constitutive (endothelial or neuronal) or inducible. People with MS have elevated levels of the inducible form of NOS which arises in response to injury or a deficiency of the constitutive forms.
It is this interplay of superoxide and nitric oxide that seems to do a lot of the damage. Consequently, it is the sum of all the things we do to limit the excess that makes a difference. In that sense, your broad brush approach to your health is going in the right direction.

Pender, in his note doesn't ask the question about what the output of an EBV infected B cell is. He jumps to other metabolic changes. The step in between is most probably driven by peroxynitrite.
So really, it is a series of steps. Not just EBV causing a problem. The issue will be limiting the peroxynitrite formation. The easiest way of doing that is not to let it form in the first place (easier said than done).
The elevated levels of iNOS probably have two origins; 1) a response to injury or inflammation or 2) a metabolic problem due to the kidney/renal system producing asymmetric dimethylarginine (ADMA) rather than the symmetric form.
Some of things you take help with inflammation. NAC is a good example (NAG is not!).
L-Arginine will help offset the ADMA and it is a useful vasodilator.
EBV is a very good survivor. It can disguise itself from the immune system and can replicate either latently or by lysis. The only real ways of controlling it is by influencing how it replicates by inserting a stop into its codan (which is what Valtrex does) or by destroying the host cell (which is what Rituxumab does). Pender speculates that a vaccine that limits GP350 would work and an EBV vaccine might work but neither exist at the moment.
Valtrex is not for everyone. It will depend on what other co-infections you may have. Attacking EBV when other infections are present can be a difficulty. Anonymoose has travelled that path.
Leonard noted at one stage in his notes that EBV also primes some cells to produce an inflammatory response when a second infection is introduced. Controlling inflammation is critical for us (which is why I don't like NAG).

My own improvement on Valtrex was significant. I detailed the whole thing in the regimes section on the note "Avonex and Valtrex" which is the early days and "Beyond Avonex and Valtrex" which is probably better thought out and demonstrates what happens when you stuff up!
Hope that helps.

Regards

[zjac020]

Amazing explanation Scott, many thanks. I'l make a note to look at those threads. I guess the key question is what test are needed to confirm that EBV should be managed, or is it through trial and error based on how one reacts to Valtrex for example?

[Scott1]

Hi,

If you have it you need to manage it. You don't need a current "active" infection. If you have antibodies that's all you need to know. Beyond that it's all about management. If you do have a chance my notes might answer some of your questions. I'm sorry they are so long and complex but that's the best I could do.

Regards

[zjac020]

Well, everyone who has MS has EBV, i guess the question it above what level of IGG does it need to be "managed". In the extensive tests carried out when testing for Lyme back in Dec 2015, 6 months after the first and only relapse, amongst other things tested, these were the results for the herpes family of viruses:

- Herpes Simplex 1 Virus IgG antibodies: 36,90 (positive as its above 1,10)
- Herpes Simplex 2 Virus IgG antibodies: <0,5 (negative as its below 0,90)
- Varicela Zoster Virus IgG antibodies: 1,32 (positive as its above 1,10)
- Epstein Barr Virus (VCA) IgM antibodies: <10 (negative as its below 20)
- Epstein Barr Virus (VCA) IgG antibodies: 75,10 (positive as its above 20)
- Epstein Barr Virus (EBNA) IgG antibodies: 223 (positive as its above 20)
- Epstein Barr Virus (EA) IgG antibodies: <5 (negativa as its below 40)

Reason Im going on about levels as of which it can be recognised by doctors as needing to be managed, is because id like my doctor to help in prescribing something for them. Your notes say "Get tested for anything a good doctor suspects you may have; look for chlamydia’s, mycoplasmas, rickettisias, Lyme disease, herpes family virus’s, JCV or any other pathogen your doctor suspects. Treat these first as they get in the way of everything else.", unfortunately in the western world IgG antibodies for virus are seen as "normal", it indicates past exposure and nothing needs to be done about them.

I can actually think of one "integrative" doctor that thinks he can treat past virus/infection with microimmunology (translated more or less from its Spanish counterpart). I assume treating these may require the use of supplements? Might be interestsed to get retested for the main ones and see him again to see what he suggests. Im pretty sure some of his treatment was homeopathic based, which im slightly doubtful about to be honest.

Anyway your feedback/opinion on these results would be much appreciated.

Thanks,
zjac

[Scott1]

Hi,

Don't get too hung up on the levels. It's important to be evidence based but it's just as important to test correctly. The EBV evidence is clear enough. The co-infections can be tricky to find. If your doctor wants to try some non conventional treatments then get ahead of him and read "Healing Lyme disease coinfections" by Buhner. It is a very good book that will give a solid technical explanation of what these infections do and why standard antibiotic treatments fail.
If you have EBV in your system you will continue to produce an excess of superoxide. That implies the risk of producing Peroxynitrite is elevated. A better test of how well you're managing that risk is a Uric acid count. (It's not urea!)
Uric acid is the final stage in the cycle of metabolizing purines. If your level is below the bottom of the standard range at the laboratory then you need to make some adjustments. Uric acid will scavenge peroxynitrite as part of a healthy system.
The negative loop works something like this- Superoxide and Nitric oxide combine to make Peroxynitrite, in turn Peroxynitrite disables Glyceraldehyde-3-phosphate in the glycolysis chain resulting in the impairment of sodium potassium pump as insufficient ATP can now be formed. The cells response is to combine 2 ADP into 1 ATP and 1AMP to compensate. The AMP is washed from the cell and the ATP is spent at the pump to become ADP and then 2 ADP combine again in an ever diminishing cycle. The A that's washed from the cycle is the purine Adenosine. Over years you will lose purine this way and the inadequate operation of the sodium potassium pump will result in lower energy and the cell will become sodium engorged. Too much sodium in the cell will trigger calcium to flood into the cell and signal the strands of proteins in skeletal muscles to adhere to each other creating muscular contraction. ATP signals the muscle strands to relax. You don't have enough ATP by this point. The end result is fatigue and muscle tightness. The peroxynitrite runs riot without enough uric acid, damaging the lipids and creating further adverse effects.

Limiting the EBV is aimed at controlling superoxide. It doesn't deal with issues related to iNOS which results in a less preferable way of making Nitric Oxide. It doesn't ensure that the metabolizing of the precursors of Vitamins A, B12 and D is occurring properly. As the EBV is nearly impossible to get rid of, the game is about adjusting for what is going wrong. That's what I am trying to set out in "Beyond Avonex and Valtrex". Generally it works for me but I did stuff up last year and ended up in hospital. Returning to my basic approach has worked but I have to deal with the damage I did last year and that takes time. This journey is leading me on to the operation of ion channels which I think I affected last year and am now trying to nut out. Hopefully you don't need to go there.

Regards

[David1949]

As to the type of MS you have, its a simple test.
If you have relapses and remissions then you have relapsing remitting MS.
If you had relapses and remissions in the past but no longer have them then you might have secondary progressive MS.
If you never had relapses and remissions then you have primary progressive MS.

It is difficult to determine in the early stages of the disease and may take a few years before you can determine which one you have.

Hope that helps.

[1eye]

There is no RRMS, no PPMS, no SPMS, no CDMS, no RMS, no CIMS, no difference between what I have, which neurologists have agreed is "SP", at my 61 years of age, and the disease that took my friend so many years ago, when I was 18 and he was 30. Only, the way he was treated may have hastened his death. He ended up lying down full-time in an institution where there was no air conditioning in summer and too much heat in the winter. I won't even describe the "operations" he was subjected to. The city was humid, having a river running through it. The institution was called the Riverside.

Sometimes we can treat the sick with unthinking cruelty.

It's the course of a disease. They started adding extra letters, only after they got used to the abbreviation: MS. The trend got popular. After adding one extra letter yielded the idea of "progressive" and the idea of "relapsing", well the adders of letters decided that one more would make it very useful indeed.

Then some folks (especially the ones who started medical school after they started adding letters) started thinking, hey, we've got orders of magnitude more diseases here, jobs for all! But these guys didn't deserve the same credit as Charcot! To get that kind of recognition, more than acronyms are required, even if they might be construed to mean something. The people with the disease only know from symptoms. Like the victims of Cerebro-Spinal Venous Insufficiency, chronic or not.

I've had "CI", "RR", "SP", and I can't wait for "end stage". Whoopee.

Fight the disease by: as much as safely and humanly possible, ignoring it, and pretending it doesn't exist. Treat your health the way you would if it were taken away, you thought it would never come back, and for some reason it did. Don't do silly or dangerous things. If all else fails, listen to your doctor, druggist, physio, psw, whoever.

You have some good health now. Do your best to make it last.