Ultimate outcome, expectation VS reality!

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DIM
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Ultimate outcome, expectation VS reality!

Post by DIM » Sun Feb 21, 2021 9:55 am

Long time member in the community but I have years to post.
To cut a long story short my wife has RRMS since 2006 with a lot of relapses the first 2-3 months that left her some numbness here and there, some fatigue after 3-4Kms of walking or when doing hard works, and minor balance issues.
Her annual MRI were full of lesions that won't mate with her clinical situation, the known MS paradox.
Treatment all those years LDN 3mg every night, a form of Swank diet customized according to ELISA food intolerance test and a lot of supplements:
All "MS" vitamins A, B12 + complex, C, D3+K2, E+tocotrienols etc, some trace elements as zinc etc, inosine, omega 3, carnitine, cysteine, resveratrol, pycnogenol, egcg, ginkgo, silybum, curcumin, quercetin and acidophilus.
Plus daily training with power plate, yoga and/or walking when possible.
So far zero relapses and generally good health for 15 years.

Until last month...
...when a very bad relapse affected her left foot (never affected before), left her unable to walk with lot of balance problems, huge fatigue and after a 5 days course of prednisolone (first time in her MS life) she started to recover very slowly and differently than her first year relapses.
She hasn't a new MRI to see what is going on but seems that this relapse is not as easy to overcome (if) as in the past, cause after a month she recently started to walk in the house without help for short distances.

I wonder what to expect, how long does it take to recover from a bad relapse according to your experiences, should I hope for full recovery?
I have read a clinical trial that statistically the first 5 years of MS life reflect the future progress of the disease and disability outcome is more or less 30% worst than these first 5 years, is it true?
But again I've read that between 10-20 years a RRMS usually goes to SPMS although some friends MSers tell me that she may recover and there is no reason to worry so much.
I know I am disappointed and probably there is no definite answer to my question, just seeking experiences and hope!
Thanks
Dim

PS: Sorry for my poor English
PS1: I added some more "remyelinating" supplements, alpha lipoic acid, phosphatidyl serine, luteolin, fisetin, bacopa and cut the resveratrol as in special cases may work as proinflammatory

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Re: Ultimate outcome, expectation VS reality!

Post by Scott1 » Sun Feb 21, 2021 9:34 pm

Hi,
Thanks for the update. You have obviously been trying to do your own research.
The thing I'd say about statistics is they are 'pretty much' just averages. Perhaps most cases fit easily under a bell shaped curve but plenty are out in the tails. Your wife might be out in the tails. She may not fit into the average case.
I'm surprised there are annual MRI's but there was nothing specifically related this episode. She must have seen a neurologist to get the prednisolone treatment. Is that the case? Did any of the annual MRI's show a change or trend worth mentioning?
Apart from the supplements you have outlined, has your wife been on any other medications for anything?

I was diagnosed in 1994 but had a massive attack in 2014 that left me in hospital for over three weeks and needing rehab for two years, then botox and a lot of work.
The fatigue can be difficult to sort out. I found 2x500mg per day of valacyclovir was extremely helpful. To justify that you would need to assume EBV has a role in MS. I've been taking it for over 20 years. The only time I stopped was in the 12 months leading up to my 2014 attack. Needless to say, I resumed taking it and have not relapsed again.
I would also try (at least) 300mg per day of CoQ10 in a tocopherol oil base plus 2000mg per day of acetyl-l-carnitine. Those three things together have made fatigue a thing of the past for me. If you need, I can go into a great deal of detail(probably too much) about what they do.
The other thing your wife needs to do is keep moving. Easier said than done, I know. It is important that she does a form of exercise that lets her eccentrically (rather than concentrically) exercise her muscles. She should also consider a regular massage routine. If she is really lucky her masseur would know what PNF stretches are and incorporate them into the massage.
Rather than thinking foot or leg or balance, can she imagine where she feels the problem is coming from. When muscles become stiff, you often have the sensation that you will be hurled to one side if you try to move normally. Where that resistance comes from also needs attention. Thinking about what is diagonal to the obvious muscle can help you spot that. A masseur should be able to find those spots as well.
The tone of your note makes me think your wife has been left on her own by her doctors to sort things out. Is that what it's like?
Regards,

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Re: Ultimate outcome, expectation VS reality!

Post by DIM » Mon Feb 22, 2021 2:43 am

Thank you Scott for your response!

Out neurologist has retired before two years so a cousine neurologist that lives away follow her remotely all this time and during this exacerbation.
Wife hasn't an MRI after this relapse, she had annualy the first few years and every two years later, we are going to visit a neurologist for a new MRI very soon when she'll feel ready.

For the fatigue she takes 2X900mg N-acetyl carnitine (but not CoQ10-ubiquinone) and the inosine that increases also uric acid and helps according to clinical trials for EBV. I give her last month Lauricidin for the same exact reason.
Believe it or not last few months I was searching natural treatments for EBV that I could add to her regimen but except polygonum cospidatum and EGCG I didn't find something more, actually I didn't know Valacyclovir works for EBV as most researchers find all antiviral drugs ineffective or not remarkably effective: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6025560/

Regarding your last question wife has not been left on her own but as she lost her father from a medical error she is very cautious and skeptical while refuses the normal DMT therapies (I agree with her, most do little/nothing, while supplements, diet and other methods really work and your case confirm this).

May I ask you why you choose Valacyclovir (Valtrex or which one?) and not acyclovir or other similar drug and what, if any, side effects you experienced?

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Re: Ultimate outcome, expectation VS reality!

Post by Scott1 » Mon Feb 22, 2021 4:07 am

Hi,
I originally started on Valacyclovir because of a random suggestion made by my GP at the time. At that time the only product was Valtrex but now there are many lower cost generics (usually spelt valaciclovir).
Acyclovir is the active ingredient. The tablet form combines valine and acyclovir which separate during digestion. The valine goes to muscles but it's insignificant. The acyclovir is very strongly attracted to a protein called a viral thymidine kinase. This protein donates one phosphate to make acyclovir monophosphate. In this form, the human host cell can donate two more phosphates to make acyclovir triphosphate. If the cell is uninfected the acyclovir is unable to get to three phosphates. This makes the drug highly specific for infected cells.
Acyclovir triphosphate can then enter the nucleus of the cell. It looks very similar to guanine triphosphate but lacks an OH group at the third carbon. The consequence is it is so similar that it can replace the guanine in the DNA sequence but, as it lacks the OH group, the DNA sequence cannot be replicated and the chain terminates. Consequently, the virus cannot replicate. ( in pictures
If only it would completely wipe the EBV out. Unfortunately that's not going to happen. The EBV has many defense mechanisms. The drug works when the virus is replicating and the new copy is vulnerable. It doesn't work on the latent infection. Hence it can keep bobbing up.

I have never had a problem taking valacyclovir. Many years ago I mentioned it on this forum and a couple of people tried it. Some didn't like it and I don't know why. I was suspicious that it may have related to the very high doses of vitamin D they all favored and there may have been a contraindication. The truth is I don't really know but I have never had a problem. A tablet has a effective life of about 11 hours so I take one morning and night. Its the consistency and constancy of dosing rather than high doses for a short time that works. Most studies just stop after a short time.
There are other drugs, like Ganciclovir or Famciclovir but they aren't really for EBV. Only valacyclovir causes chain termination. That's the result you want.

Taking the NAC will help a process called beta oxidation where fatty acids are burnt. The carnitine acts as shuttle to transport fatty acids into the mitochondria as part of energy production process. It is extremely high yield for making ATP.
CoQ10 has a special role as the key acceptor and donor of electrons in the electron transport chain. If that process is faulty you will be endlessly fatigued (or worse).
Inosine is product of purine degradation which follows the sequence - ATP-ADP-AMP-adenosine-inosine-hypoxanthine-xanthine-uric acid. So its a fair way down the degradation path. Ideally, you want to focus on a cycle of atp-adp-atp and only a little bit goes through the whole chain to waste product. It is a slow process to build ATP from inosine. If you can make ATP on demand (you can't store it), your uric acid levels will be fine.
I don't use DMTs these days. I have tried them but found 10 years of Avonex was pretty hard and couldn't tolerate anything else I tried.

Regards,

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Re: Ultimate outcome, expectation VS reality!

Post by DIM » Mon Feb 22, 2021 4:07 am

Thanks again for the explanations, forgot to ask you Scott, did you fully recover from your last attack in 2014?

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Re: Ultimate outcome, expectation VS reality!

Post by Scott1 » Mon Feb 22, 2021 4:12 am

Fatigue wise - Yes.
I had a lot of spinal cord damage (cavitation and necrosis) so I have some tightness but I think I am doing ok. Two years after that attack I made a video about using Pilates with MS. So you can judge for yourself.

Regards,

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Re: Ultimate outcome, expectation VS reality!

Post by DIM » Mon Feb 22, 2021 5:07 am

I have never had a problem taking valacyclovir. Many years ago I mentioned it on this forum and a couple of people tried it. Some didn't like it and I don't know why. I was suspicious that it may have related to the very high doses of vitamin D they all favored and there may have been a contraindication.
I can't find contraindications for Valacyclovir and vitamin D, wife takes every other day 5000IU D3+K2:
https://www.medicinenet.com/valacyclovi ... lacyclovir
But it states "serious side effects include central nervous system side effects" which warns me against it's use

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Re: Ultimate outcome, expectation VS reality!

Post by NHE » Mon Feb 22, 2021 8:37 am

DIM wrote:
Mon Feb 22, 2021 5:07 am
I can't find contraindications for Valacyclovir and vitamin D, wife takes every other day 5000IU D3+K2
Does she take a magnesium supplement? That much D3 can lead to magnesium deficiency over time. This can cause painful muscle cramps. I became magnesium deficient while taking just 2000 IU/day and would get painful cramps in my feet which would wake me up at night. Magnesium glycinate is a good absorbable form to use.

Oh, is there any folate (for example, methyl folate not folic acid) in her supplement regimen? EGCG inhibits both folate uptake by the cell as well as the processing of dietary folate via the inhibition of the enzyme dihydrofolate reductase. See... viewtopic.php?p=237383#p237383

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Re: Ultimate outcome, expectation VS reality!

Post by DIM » Mon Feb 22, 2021 9:12 am

She takes 3 days X 400mg magnesium per week, 3 X 400mcg methyl folate (B-complex supplement) plus we eat twice per week buffalo liver and the mineral water we drink has high magnesium content at 80mg/lt!
But her blood test never showed low magnesium or folic acid, her B12 last time was slightly above normal levels that's why she doesn't take more B-complex as in the past.

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Re: Ultimate outcome, expectation VS reality!

Post by Scott1 » Mon Feb 22, 2021 4:13 pm

Hi,

When I l look up drugs I prefer to go the FDA source document. If you google "drug name + FDA" that should put you in the right area.
This is the source document for valacyclovir https://www.accessdata.fda.gov/drugsatf ... l2_lbl.pdf

A blood test for magnesium doesn't tell you much. 50% of our total magnesium is in our bones. Of the intracellular magnesium, about half is bound to ATP and a similar amount is bound to ribosomes. Only 0.5% is in our blood. However there are many studies that show magnesium levels in the tissue (not blood) of MS subjects is lower than in healthy controls so you should take a supplement. The more important issue is the form of magnesium. A supplement should have the word "glycinate" on the label. That is the best absorbed. I take 2x 50mg equiv elemental magnesium per day.
I also get my B vitamins from dark green leafy vegetables etc. Whenever it is (rarely) checked the levels seem ok.
The liver should help with CoQ10 (heart has a higher concentrations) but you still might need to supplement.
Regards,

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Re: Ultimate outcome, expectation VS reality!

Post by DIM » Tue Feb 23, 2021 4:18 am

Hi Scott, and thanks again for your valuable suggestions, I tried to send you personal message but it is stuck in the outbox, don't know why!

Anyway I discussed yesterday with my wife your case - the valacyclovir treatment - but she is negative generally about medicines, mainly due to long term use side effects.
Although from my research such low dose is quite safe, could she take it for two months and then stop it for 15 days (EBV needs more than 2-3 weeks to re-activate right?) so it may detox from the medicine in the meantime and reduce possible side effects?

Her case fits perfectly the EBV theory (that's why I give her some proven anti-EBV supplements), MS started after a repeated illness for months with swollen lymph nodes, fever, and inflamed throat so from the beginning I was wondering if this has something to do with her previous infection.

Last few years she reduced dosage for all her supplements and cut lauricidin (monolaurin) which helps a lot, while the increased anxiety we experience and some new bad diet habits I guess contributed to the recent attack.

Hope she will be much better very soon although her improvment is slow compared with her first relapses 15 years ago.
I have read due to inflammation in the first relapses remyelination is increased, while an old MS patient has slower remission and generally improvment!

Cheers

Dim

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Re: Ultimate outcome, expectation VS reality!

Post by Scott1 » Tue Feb 23, 2021 3:55 pm

Hi Dim,

Your message got through.

I understand why your wife is cautious. There's no logical reason she should accept anything read on the internet.
Your description of her swollen lymph nodes sounds exactly like they way I was years ago.
The drug valtrex was originally only prescribed for genital herpes. It was used as a high dose for a short time to aggressively stop viral replication. At those high levels there wasn't a history of significant side effects. The risk is that setting would be a herximer response where the pathogen puts up a fight while it is attacked. The usual response to a herximer response is to persist at a half dose then return to a full dose as the pathogen weakens. 2x 500mg is a low dose so I doubt any side effect would appear at all. It doesn't build up in your system and is quickly excreted so an ongoing dosage doesn't create a risk of toxicity.

When I first started using it, I had quite noticeable brain fog. After three days that started to disappear but it took some time before I felt normal. At that time I was also on Avonex (interferon) and the two worked well together although I hated the interferons side effects.
After 20+ years, my opinion would be valacyclovir, CoQ10 and aceytl-l-carnitine are synergistic in terms of fatigue but they are all working on different pathways doing different things.

Does your wife have white patches on the sides of her tongue or at the back of her mouth? If she does, that is called oral hairy leukoplakia. It's the only physical manifestation of EBV. The valacyclovir would clear that up. She may not have it, which would be good. If she does have it then that would be a sign that her system is very compromised.

My approach would be to stop any other prescriptions (supplements should be fine) and just take the valacyclovir so you can observe its effects on their own. Then reintroduce other medications to see if there is any contraindication. If you take everything together you can't tell what is causing what.
There is only one bad diet habit that I feel doesn't help - added sugar. I never seen a reasonable diet that says "add more sugar."

Regards,

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Re: Ultimate outcome, expectation VS reality!

Post by DIM » Wed Feb 24, 2021 3:28 am

Hi, wife has had herxheimer reaction the first 2-3 weeks on LDN/supplements that went away and she felt much better the next months.
I don't remember when exactly, but she has had white tongue and mouth patches for sure before and during her first relapses.
Last years never again as far as I know/remember, but when she has the slightest malaise/colds, takes every two-three hours 1-2gr C powder until it clears completely, I do the same for colds and flu.
She had also one year before MS onset facial nerve palsy which is an EBV symptom, not so common though and fortunately it went away.
I'll try to convince her when her LDN pills are over to start Valtrex 2X500mg and see if it works the same as in your case, does she need to have some specific blood tests before or during Valacyclovir treatment?

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Re: Ultimate outcome, expectation VS reality!

Post by Scott1 » Wed Feb 24, 2021 3:50 am

Hi,

There's no need for a blood test. EBV is a common infection so you could test to see if she shows evidence of exposure but it would be so unremarkable that no one would care.
The thing that you can't test for is whether the virus is replicating by a lytic or latent cycle.
Latent replication is ok because the virus just silently makes a copy each time a cell divides. (normal people)
Lytic replication happens when the cell bursts and many copies of the virus are released. Constant use of valacyclovir interferes with those new copies. It doesn't do much to the 'harmless' latent copy. The mechanism that switches the cycle from latent to lytic is not well understood. Researchers know it happens and also know people get sick in the lytic cycle.
When I had the white patches I always had a metallic taste in my mouth. When I started on valacyclovir everything started to taste better. I really noticed the bubbles from fizzy drinks. Before that all drinks had a slightly slimey feel.
If its working she will notice a difference. There isn't a test that measures something.
Regards,

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Re: Ultimate outcome, expectation VS reality!

Post by DIM » Wed Feb 24, 2021 6:09 am

Ok then,today she had an EBV blood test for IgG IgM VCA & IgG EA that will show if she had recently active or dormant the virus

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