Beyond Avonex and Valtrex

[Interrupted]

I know that I likely won't go on it, it's a deja vu scenario. I've been here with him before and turned it down, he seems to like Aubagio for some reason. Sickness, dizziness, confusion etc. sounds like my average day, I don't want it doubled up and I most definitely don't want the hair loss or liver malfunctioning!
What I want, I think, is to be able to try Avonex at quarter dose titrated up. I mean if I still get the awful headache at 1/4 dose I know that I just simply can't take it and can let it go, so to speak. That said, I am cautious with regards toying with Avonex further considering what is currently happening.

I agree, I decided earlier to ring them first thing in the morning and try and get into clinic tomorrow because a) I want oral steroids (I can't do IV, even at half dose) and b) i'd like to have my bloods done again - so hopefully I can get in.

Supplements etc? Oki, brace yourself, currently from memory, so may miss some...

N-A-C, Multivit Complex, Vitamins B Complex, B6, B12, C, D3, CoQ10, Inosine, Circumin, Lecithin, Selenium, Arginine, Folapro, Glutathione, borage, fish and flaxseed omegas, probiotics - usually all 3 BioKult, Symprove or VSL#3.
+ Pregnenolone (occasionally)
+ Oil of Oregano when needed,

+ Doxy 200mg
+ Valtrex 250mg
+ Aspirin 75mg
+ Omeprazole, Cholestyramine and pain/inflammation meds are the mandatories.

+ Chlorella Vulgaris or Charcoal when I feel I need 'moppers'

(Also in food stuffs every day I can manage...)
+ Coconut Oil
+ Greens 'smoothies' (basically as much kale as possible with a few blueberries and coconut water or water)
+ Carrot juice

[lyndacarol]

I know that I likely won't go on it, it's a deja vu scenario. I've been here with him before and turned it down, he seems to like Aubagio for some reason. Sickness, dizziness, confusion etc. sounds like my average day, I don't want it doubled up and I most definitely don't want the hair loss or liver malfunctioning!
What I want, I think, is to be able to try Avonex at quarter dose titrated up. I mean if I still get the awful headache at 1/4 dose I know that I just simply can't take it and can let it go, so to speak. That said, I am cautious with regards toying with Avonex further considering what is currently happening.

I agree, I decided earlier to ring them first thing in the morning and try and get into clinic tomorrow because a) I want oral steroids (I can't do IV, even at half dose) and b) i'd like to have my bloods done again - so hopefully I can get in.

Supplements etc? Oki, brace yourself, currently from memory, so may miss some...

N-A-C, Multivit Complex, Vitamins B Complex, B6, B12, C, D3, CoQ10, Inosine, Circumin, Lecithin, Selenium, Arginine, Folapro, Glutathione, borage, fish and flaxseed omegas, probiotics - usually all 3 BioKult, Symprove or VSL#3.
+ Pregnenolone (occasionally)
+ Oil of Oregano when needed,

+ Doxy 200mg
+ Valtrex 250mg
+ Aspirin 75mg
+ Omeprazole, Cholestyramine and pain/inflammation meds are the mandatories.…
From this 19-minute video, Vitamin B-12; New Understanding and Approach to an Old Problem from the University of Wisconsin, Department of Family Medicine



@11:00: "Omeprazole and cholestyramine reduce vitamin B-12 absorption or availability."


+ Chlorella Vulgaris or Charcoal when I feel I need 'moppers'

(Also in food stuffs every day I can manage...)
+ Coconut Oil
+ Greens 'smoothies' (basically as much kale as possible with a few blueberries and coconut water or water)
+ Carrot juice

I disagree with many of the ideas/suggestions in the University of Wisconsin video I have posted, but I have seen the information that cholestyramine and omeprazole reduce B12 absorption in several sources.

[Scott1]

Ok.

Lets stop the attack first and then start again.

Why can't you handle IV prednisolone? I found it more tolerable than the oral which made my stomach feel like it was ripped to pieces.
Regards

[Interrupted]

Hi Lyndacarol, and thanks. To be honest the cholestyramine has always been a bit of a concern because before I started it I read the indications and noted that it can hamper absorption of the fat soluble vits, A, D, E, K and other drugs, especially penicillin and tetracyclines - so i'm careful to take all other supplements and meds well away from it - but i'll definitely up the B12 a bit to compensate because I wasn't aware, thanks

Scott, i'll be going in tomorrow morning to see about steroids/bloods, I rang first thing but they couldn't fit me in today.
I tried the IV steroids twice, at half dose both times and they just did not agree with me, after 2/3 days I was insanely anxious and hallucinating. Thus i'd rather try the oral steroids and be able to control what i'm taking, stop if I need to and take the amount I want. They may prove to do the same to my rarely happy gastric system, but I won't know 'til I try.
- I'll just say here that I don't really expect steroids to do much. This is not a big 'attack' in the way that neuros like to label things and in the way steroids are intended for, I don't seem to get them in the way I used to, it's more of a riled up progression. I think the most I can hope for - if it's a response to the Avonex - is just to calm things down and hopefully level a little. My main concern is my vision and leg strength.

[lyndacarol]

...i'll definitely up the B12 a bit to compensate because I wasn't aware,...

...i'll be going in tomorrow morning to see about steroids/bloods, I rang first thing but they couldn't fit me in today.
I tried the IV steroids twice, at half dose both times and they just did not agree with me, after 2/3 days I was insanely anxious and hallucinating. Thus i'd rather try the oral steroids and be able to control what i'm taking, stop if I need to and take the amount I want. They may prove to do the same to my rarely happy gastric system, but I won't know 'til I try.

As I recall, Interrupted, you are JCV positive. I have no medical training, but it seems to me your JCV status should be considered by your doctor who might prescribe steroids (Could this be a reason NOT to take any steroids?). At least, discuss it with your doctor tomorrow.

Also, be aware that vitamin B12 and folate levels decreased after IV steroids, as reported in the following article (I can only assume that there could be a similar effect with oral steroids.):

http://www.ncbi.nlm.nih.gov/pubmed/8326337

J Neurol. 1993 May;240(5):305-8.
Decreased vitamin B12 and folate levels in cerebrospinal fluid and serum of multiple sclerosis patients after high-dose intravenous methylprednisolone.

Frequin ST, Wevers RA, Braam M, Barkhof F, Hommes OR
· 1Department of Neurology, University Hospital Nijmegen, The Netherlands.

If your doctor has not already screened you for a possible vitamin B12 deficiency, blood tests are not reliable at this time since you have been taking supplements (B Complex, B12). Perhaps the HoloTranscobalamin (HoloTc) test could give accurate results – another topic for discussion with your doctor.

[Interrupted]

Hi, yep you're right.
To be honest I didn't know that there may be conflict between the two? (unless you mean the immunosuppression risk, but I would hope i'm ok as the last time I tried steroids was probably 5 yrs ago)
My neuro is very blasé about the JC virus, I have a feeling he thinks that being JCV+ is no reason to not be on Tysabri. Which I don't feel quite the same about.
Tomorrow will be a random on duty outpatients doc' so I have no idea if they will be able to answer that one, but I will absolutely raise the point.

[lyndacarol]

Hi, yep you're right.
To be honest I didn't know that there may be conflict between the two? (unless you mean the immunosuppression risk Yes, exactly my concern., but I would hope i'm ok as the last time I tried steroids was probably 5 yrs ago)
My neuro is very blasé about the JC virus, I have a feeling he thinks that being JCV+ is no reason to not be on Tysabri. Which I don't feel quite the same about – I feel the same as you do.
Tomorrow will be a random on duty outpatients doc' so I have no idea if they will be able to answer that one, but I will absolutely raise the point.

[Interrupted]

Hiya, still alive, I think.
Been a very rough time since I last posted, seem to be getting worse and worse. Am now extremely weak and lost more power in the last six months than I did in 15 years, which has really hit me hard mentally as well as physically. I don't know why this is, nothing seems to make sense.

Still on acyclovir 200mg x 2 /day (though currently having a week off for penicillin) but have been on it for, I guess 4 months + now. I've had to seriously reduce my supplements as have no money and wanted to give my poor body a break from having to process so much when it has no resources to do so, so now only solidly on D3, liberal amounts of C, Folapro and B12 lozenges. Also almost totally off sugar, diet's very good but to no avail.
Titrated Avonex due to turn up on the 15th. That doesn't feel like a good move though, but I have to do it.
GP has admitted defeat, says there's no more he can do or try. No point reaching out to MS dept.

That's it really, it seems to be so and I can't do anything to improve it. Never felt so rubbish and depressed through the whole of this blasted disease so far. It's like having CFS in the extreme and MS acceleration. Sorry it's not good news, hopefully one day!

[Scott1]

Hello,

I often think about you and wonder how you are. Sorry to hear of your developments.

I seem to be slowly getting better. A big difference between us is you have tonsils and I don't. Pender, in his work on EBV infection, refers regularly to the tonsillar tissue as the home of B cells. You may be too unwell to have yours out as it is a truly unpleasant operation for an adult. What is the penicillin for? I don't think it contraindicates with Valtrex.
As a different idea, have a look at this article (which is a bit dense) - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2736463/

It was done by some people at Stanford university and Harvard university. The coauthor, Lawrence Steinman is responsible for drawing the link between the efficacy of the psoriasis drug, BG-12, and extending the time between MS exacerbations. It has been remarketed as Tecfidera, as a result, so he is no slouch.
Steinman noted that the ACE inhibitor, lisinopril appeared to reverse the effects of MS demyelination and found on testing it on mice with EAE that their condition was reversed. It is a cheap drug and widely used.
Have you checked your blood pressure particularly when feeling at your worst? I have discovered mine is all over the place and I am mostly mild to moderate hypertensive. When I have a good reading for both systolic and diastolic measures I feel terrific but when I don't I feel quite out of sorts.
The ACE inhibitor works on the angiotensin converting enzyeme but also appears to suppress TH1/TH17 mediated immune responses to autoantigens.
Perhaps with limited money and a doctor who needs something to grasp, you could look at this option.
Regards

[Interrupted]

You may well be right - they had been absolutely fine. It's my neck glands that are up all the time as of the last month or so. I had kinda hoped maybe it was herx' but I don't think so.
Oh, because GP will be more amiable to do blood tests (which will show zilch as always, so not sure why I want him to) if he knows it's definitely not a streppy issue. No it doesn't contra-indicate but I wanted to see if a week off would make me feel any better anyway. Nope. Though I did read that acyclovir can lead to abx resistance when taken over a long period, which I didn't know.

I really don't understand that Scott, sorry, my cognition is atrocious these days even when my eyes do let me read. So this is lisinopril?

My BP is usually the low side of normal, it does dip further occasionally but i've seen little correlation to anything. Except after a general anaesthetic, or tramadol.

[Scott1]

Hi,
If your blood pressure is low then the drug they discuss would probably not be right for you. It might still be worthwhile tracking it anyway. Mine is usually high but occasionally it plummets and then I feel really awful. There is a tendency with the all the medical people I see to not look at the blood pressure. A monitor is an objective measure and its easy to keep the data. Perhaps, by observation, we may see a pattern emerge.
I'd never heard of Valtrex affecting an antibiotic. It works by inserting a stop in the RNA ribbon of virus as it starts to replicate. Maybe it makes bacteria hibernate as a defence and that affects how the bacteria absorbs the antibiotic but I've never heard of it. It's probably good practice not to mix them but I don't know the logic behind doing that.
Can you get a BP monitor?

Regards

[Scott1]

Hi Again,

I’ve been thinking about your situation.

If we take what we know and look at it from my odd perspective then maybe we can find a path.
The first step is to look at what we know. I take a previous infection with EBV as a given.
You have an infection which your doctor calls a strep throat. The obvious questions are what is the infectious agent causing the problem and why hasn’t past treatment cleared it up?

How can you get an infection like that? It could be externally introduced by breathing unfiltered air through your mouth or a systemic infection. As it recurs are you treating the infection correctly?

We need to determine what the underlying infection is. Your doctor is using penicillin so he must assume it’s bacterial. What evidence supports that? Is he treating a primary infection or a secondary infection? Did he check for Chlamydia Pneumonia or Mycoplasma Pneumonia?

If it’s a Chlamydia then he should use Macrolides,tetracyclines or fluoroquinolones.
Here’s a brief description - http://www.emedexpert.com/classes/antibiotics.shtml
If it’s a mycoplasma then macrolides may not work because they are used in farming and that has led to resistant strains. Azithromycin still has reasonable success. Buhner pointed out that as mycoplasmas lack a cell wall then penicillin ,betalactams, cephalosporins,vancomycin,sulfonamides,trimethoprim and rifampin won’t work.

Doxycycline seems to work on nonurogenital mycoplasmas but may need moxifloxacin for six months as well.

If it’s chronic then doxycycline is the most reliable. If it’s urogenital, then Buhner suggests azithromycin but single dose treatments have a high relapse rate and reduce the ability of subsequent treatments to cure infection.

Dealing with the source of your recurrent infection seems critical to me. You need to know what it is at a pathological level or have a damn good guess. If there is a mycoplasma down there then penicillin won’t help.

Leonard pointed out some time back a piece that shows a pre exposure to EBV primes cells to produce arachidonic acid when exposed to a second agonist. This may be what is happening to you.
See- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1906243/

So it’s not enough for your doctor to just say he has exhausted his options. Has he determined what exactly is causing your strep?

In terms of being tired you are probably not able to utilize ATP correctly. Has your doctor checked where your uric acid level sits against normal? I suspect it will be below the bottom end of the normal range. That would indicate that the metabolism of Purines is abnormal. In turn that suggests that the recycling of ADP into ATP isn’t working and the cellular response to the shortfall is failing as the purines involved have been depleted. See my comments on 7th December 2014. - http://www.thisisms.com/forum/regimens- ... 9-165.html

To counteract this you need high doses of Q10 and Aceytl L-Carnitine. You are probably producing too much peroxynitrite which won’t help. The summary earlier in this post of Stephen Sinatra’s book sets it out.

To be honest, I have lots of questions about supplementing with D3. I’d rather take carrot juice to boost the RXR nuclear receptor and influence the VDR that way. I’ve never used D3. Perhaps I should have but the evidence looks anecdotal. I don’t doubt the significance of Vitamin D. Chasing numbers just doesn’t appeal to me. Many will disagree and that’s fine. They may be right.

It would be interesting if you could monitor your blood pressure. No one ever talks about it.

Regards

[Scott1]

Hi,
Time to talk about me again.
I just had a new MRI done of my brain. It’s roughly six months since the previous one when I was hospitalised.
On my previous MRI there was a series of very identifiable white patches. They were large and impossible to miss. On my recent image they have resolved so there are very few signs of disturbance and the neurologist tells me there is no new damage apparent. This can be common but it’s still good news.
All through my bad patch I continued to use Q10 and Valtrex. I resumed taking Valtrex and have continued to do so. Additionally, I introduced L-carnitne and N-aceytl-cysteine.
It hasn’t been an easy recovery. I sustained some damage on my spine, particularly around C7 that left me with altered sensation in my hands. Slowly, they are recovering. I also had many periods of neuropathic pain, numbness and awkwardness but they are all diminishing. The most concerning problem is an elevation in my blood pressure. At the high end, my Systolic reading can hit 190 but more often is around 170. My Diastolic reading has reached 110-115 but mostly is around 84. Both reading are indicative of hypertension although I lead a very sedate life. Massage and exercise help lower both numbers and both flip all over the place. Additionally, I find I have tight muscles more often than before.
All throughout this period, including the attack, I have remained free of fatigue. (That sense that your body is made of wet cement and you are exhausted by it). I can be worn down by the high blood pressure and the tight muscles but it’s not fatigue. In particular, I attribute this to maintaining a nightly Q10 dose of 750mg.
The troubling thing was the blood pressure so I turned to Stephen Sinatra’s book “The Sinatra solution” to look for a better understanding. This is an extract from pages 41-43 of the book-
“Heart and muscle cells are able to contract even when energy levels in the tissue are extremely low, which relates to the concept of fight or flight” and self preservation. No matter if we are totally exhausted and drained of energy there’s generally enough power left in heart and muscle tissue to allow us to run back to the cave to rest and restore ourselves…..A great deal more energy is required to relax the heart muscle than to force it to contract for two reasons.

[Scott1]

First, energy is needed to separate the bonds formed during contraction, which allows the muscle to return to its relaxed state. These bonds, called rigor bonds, will not break without the help of lots of energy. The second use of energy during relaxation is for the removal of calcium ions from the cell following contraction.
When the heart is preparing to contract, large amounts of calcium rush into the cell, aiding the contraction process. When the contraction is over, the calcium must be moved back out of the cytosol of the cell and away from the contractile proteins. Calcium ions will not exit by themselves, however, because the concentration of calcium outside the cytosol is much greater than it is inside. They must be physically pumped out of the cytosol- an ATP dependent process. The calcium pump has two binding sites for ATP, and both must be attached to ATP before the pump will work”.
He makes a useful analogy on page 43-
“To make the process easier to understand, consider a case we have all experienced; the phenomenon known as writers cramp, in which the muscles of the finger get so tight after several minutes of writing without a pause that they cannot be extended….Because all the cellular energy has been consumed, calcium cannot be discharged from the cytosol and the rigor bonds formed in the muscle fibers cannot be broken”.
In my case, the heart muscle cannot fully relax, the venticles of the heart are at risk of thickening forcing the diastolic blood pressure to rise, reducing the quantity of blood discharged and making the heart work harder.
On page 177, he talks about the condition Fibromyalgia-
“Research has shown that the walls of the capillaries feeding blood and oxygen to affected muscles become thickened and are unable to deliver enough oxygen to fully supply the tissue. This lack of oxygen creates localised ischemia and drains energy pools in the affected muscle. Energy depletion then unleashed a cascade of physiological events leading to severe pain, muscle stiffness, soreness and overwhelming fatigue….The lack of cellular energy inhibits the activity of the cellular calcium pumps so calcium cannot be adequately discharged from the cell following contraction. The buildup of calcium in the cell sustains the contraction and keeps the muscle tense. The increase in intracellular calcium also causes potassium ions to rush out of the cell, activating pain receptors on the cell membrane called nociceptors. The pain caused by nociceptor activation causes further tightening of the muscles, contributing to further muscle stiffness and exacerbating the drain on energy reserves. So the downward spiral continues.”
There are many elements of this spiral that I can identify with.
My neurologist has suggested I try the medication, Baclofen. It is a failed epilepsy treatment that proved successful in relieving spasms in MS. Essentially it is a potassium channel blocker that modulates GABA to alter the calcium flow. I think it’s worth a try but would probably have limited usefulness without an emphasis on making as much ATP as possible which I achieve by using Q10 and L-carnitine. Sinatra would add D-Ribose to that but it is not available in Australia except through the internet and I would like to know why before I just added it.
Regards

[Anonymoose]

Hi Scott1,
You've got me curious (again). Looking at this from my new candida/fungal point of view now and just having had a look at a CNS candida MRI, I'm wondering what those new and thankfully gone lesions looked like. Did they look like those on a candida MRI? As I recall, you experienced gut related improvements from lactoferrin. Lactoferrin can help to fight candida. You also started taking antibiotics before you relapsed...maybe that disturbed your gut flora and allowed for candida overgrowth? The way things go...it just seems like we're fighting some pathogen during relapse. Maybe, as you've mentioned before, we need to look for more than just ebv. Anything on your radar?

(I'm back on diflucan and hoping to get a long term prescription for it and nystatin tomorrow. I knew it couldn't be gotten rid of so easily!)