Beyond Avonex and Valtrex

Tell us what you are using to treat your MS-- and how you are doing.

Re: Beyond Avonex and Valtrex

Postby Scott1 » Mon Dec 28, 2015 5:52 pm

Hi,

Unfortunately, that will be a bit like working out how long an elastic band is. As I get it from a shop there is a bit of variance depending on which girl makes it. (I used to think it was only teenage boys who put the brain into neutral, now I'm not so sure)

As a rule of thumb, the drink is 450ml. It is predominately carrot because it provides a lot of liquid and about a third (a guess) beetroot. The ginger is probably a piece and the kale is a handful depending on the girl.
At 11.45am I am 132/86 with a pulse of 69. It's not 120/80 which is what where I was heading when I took the Baclofen at night. I feel great and my muscles are definitely much freer. It's just the number. If I am able to influence as much as recently then I'd hate to be told I need medication to bring it down.

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Re: Beyond Avonex and Valtrex

Postby jimmylegs » Mon Dec 28, 2015 8:49 pm

heya, thought these looked interesting:

The content of nitrates and nitrites in fruits, vegetables and other foodstuffs
http://www.ncbi.nlm.nih.gov/pubmed/7777773
Nitrate and nitrite content in organically cultivated vegetables.
http://www.ncbi.nlm.nih.gov/pubmed/24785312

(my usual resources don't have nitrate stats :P )

looks like good ol spinach and swiss chard are goodies for mag, AND phos, AND nitrates :)

(and recall: 1 min boil / drain for spinach, 3 min boil / drain for swiss chard)

i just loooaded up on frozen spinach the other day, but am trying to work my way up to growing some chard indoors this winter rather than ship if from somewhere far with a depleted aquifer in the mix :S probably will just end up grabbing a bunch from a farm next summer and then figure out how to work it into canned stuff?? we shall see...
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Beyond Avonex and Valtrex

Postby Scott1 » Tue Dec 29, 2015 7:23 pm

Sorry,

I am away for a few days. The diastolic stays in the mid 80s and the systolic seems to be stuck in the mid 130s. What would you say if I added one more calcium tablet?

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Re: Beyond Avonex and Valtrex

Postby jimmylegs » Wed Dec 30, 2015 2:48 pm

calcium? sounds counter-intuitive.

if you mean mag, yes you could likely try one more again, esp if baclofen is not currently in the mix.

do try to get the good foods in there as the foundation as well, though - maybe a good trail mix could factor into a healthy BP equation:

http://www.healthaliciousness.com/artic ... -foods.php
#1: Seeds (Pumpkin & Squash) Phosphorous per ounce (28g) 345mg (35% DV)
Other Seeds High in Phosphorous (%DV per ounce): Sunflower Seeds (32%), Chia Seeds (24%), Sesame Seeds (22%), Watermelon Seeds (21%), and Flaxseeds (18%).

http://www.healthaliciousness.com/artic ... nesium.php
#2: Nuts and Seeds (Squash and Pumpkin Seeds) Magnesium per 1/2 Cup (59g) 325mg (81% DV)
Other Nuts and Seeds High in Magnesium (%DV per 1/2 cup): Sesame Seeds (63%), Brazil Nuts (63%), Almonds (48%), Cashews (44% DV), Pine nuts (43%), Mixed Nuts (39%), and Peanuts (31%), Pecans (17%), Walnuts (16%)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
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Posts: 10243
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Re: Beyond Avonex and Valtrex

Postby Scott1 » Wed Dec 30, 2015 3:10 pm

Hi,

Yes, I meant magnesium. (brain fade).

I added one more at 6.30 pm and took one before bed. On rising I was back to 122/78 and now after walking dogs on the beach and racing around I'm 129/78 with a pulse of 78 at 9.30am.

I'll have a closer look at your suggestions when I get home tonight. 39c in Melbourne today!

Regards,
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Re: Beyond Avonex and Valtrex

Postby jimmylegs » Wed Dec 30, 2015 5:06 pm

well that sounds encouraging. hopefully you are zeroing on the right balance to meet your system's needs right now.

39, wow that's a hot one! good to hear you're racing around regardless :D
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Re: Beyond Avonex and Valtrex

Postby Scott1 » Wed Dec 30, 2015 7:52 pm

Hi,

After driving home for a hour (we hit 40C) I am 122/77 with a pulse of 87. Probably needed a bit more mag. Now I need to understand why.

Regards,
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Re: Beyond Avonex and Valtrex

Postby jimmylegs » Wed Dec 30, 2015 10:10 pm

great news! let's hope it continues.

related:
The Dose-Dependent Reduction in Blood Pressure Through Administration of Magnesium A Double Blind Placebo Controlled Cross-Over Study
http://ajh.oxfordjournals.org/content/6/1/41.short

and considering the NO 'vein', if you will:
'Hypomagnesemia Inhibits Nitric Oxide Release From Coronary Endothelium: Protective Role of Magnesium Infusion After Cardiac Operations'
http://www.annalsthoracicsurgery.org/ar ... 03-4975(98)00020-4/abstract?cc=y=

this in spite of the searches conducted the other day which turned up things like mag acting independently of nitric oxide in vasodilation.. will have to reexamine to see how these elements piece together! :)
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
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Posts: 10243
Joined: Sat Mar 11, 2006 4:00 pm

Re: Beyond Avonex and Valtrex

Postby Scott1 » Wed Dec 30, 2015 11:14 pm

Hi,

So what is happening with the magnesium?

Originally, I found the introduction of magnesium lowered my diastolic pressure in particular. This is the measure of how relaxed the heart is between each beat so it can fill with blood. The heart is just a muscle made of the same striated strips of protein as skeletal muscles so the impact should be similar.

Prior to Baclofen, my diastolic was always around 92. After Baclofen it was always around 84. The WHO says normal is below 80. My 17 year superfit son has a diastolic of 54. I am 58 so I’m not chasing him. My superfit 89 year old Uncle also has a diastolic of 54 (Agghhh!!) if he takes his medication. He is an unusual case as he only has half a kidney and is closely monitored.

After I introduced the magnesium the diastolic dropped below 80 (yippee!!) but I struggled to combine it comfortably with Baclofen as described earlier. So what should I look at?

If we revisit my old friend, peroxynitrite, and google that with Magnesium we find these sort of references.

http://www.sciencedirect.com/science/ar ... 9302035512

http://www.ncbi.nlm.nih.gov/pubmed/12417336

Which introduce a whole new word - sphingomyelinase 1

The important part is the reference that this enzyme is magnesium dependant. There are other sphingomyelinase that are independent of magnesium and other enzymes in the family of sphingomyelinase.

A glance at Wikipedia shows sphingomyelinase and myelin are linked.

https://en.wikipedia.org/wiki/Sphingomyelin

“Sphingomyelin is a type of sphingolipid found in animal cell membranes, especially in the membranous myelin sheath that surrounds some nerve cell axons.”

“Sphingomyelins are present in the plasma membranes of animal cells and are especially prominent in myelin, a membranous sheath that surrounds and insulates the axons of some neurons—thus the name “sphingomyelins.”

“Sphingomyelin content in mammals ranges from 2 to 15% in most tissues, with higher concentrations found in nerve tissues, red blood cells, and the ocular lenses. Sphingomyelin has significant structural and functional roles in the cell. It is a plasma membrane component and participates in many signaling pathways. The metabolism of sphingomyelin creates many products that play significant roles in the cell.”

So we are talking about an enzyme that is critical to cell plasma, myelin formation, nerve axons and particularly myelin sheaths.

Peroxynitrite disables Magnesium-dependent sphingomyelinase so it is not available for those critical processes.

As Josephs found –“irreversible inactivation of this enzyme by peroxynitrite generated from SIN1 is likely due to definitive oxidative thiol modification.”

Adding Magnesium makes sense if this is happening.

Just on blood pressure alone, I found this- http://www.ncbi.nlm.nih.gov/pubmed/21818267

It concludes that “Hypertension is associated with marked alterations in vascular sphingolipid biology such as elevated ceramide levels and signaling, that contribute to increased vascular tone.”

In this study on heart disease - http://www.ajcd.us/files/ajcd1211005.pdf (It won’t let me copy it)

Read page 24 starting at the bottom paragraph. It shows they have demonstrated that Sphigomyelin and calcium bind to each other. This is unhealthy in heart disease but for MS should we look at the enzyme, Magnesium-dependent sphingomyelinase?

Two things stick out to me. If I lack the enzyme because peroxynitrite has disabled it then all my lipids are affected and calcium is released from the cell to bind to the sphingomyelin and secondly that unhelpful release of calcium signals muscles to tighten.

If adding magnesium overcomes this, as it seems to be doing to me then that is a good thing.

Happy to be picked on.

Regards,
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Re: Beyond Avonex and Valtrex

Postby Scott1 » Thu Jan 07, 2016 5:49 pm

Hi,

Well I've gone from the 23rd of December till now without Baclofen. There was a bit of oscillation in the blood pressure and a few spikes but generally it wasn't bad. However it is still elevated against the sub 120/80 benchmark.
Last night was a shocker. I shot up to over 90 on the diastolic and the systolic was 162. There is no way it can be called comfortable.

Tonight I will go back to 5mg of Baclofen before bed and keep up the magnesium at morning, noon and 6pm.

The best thing about the magnesium is it really does help the muscles relax. I am much freer than I was. The tricky part is when it first starts to impact. You feel weaker as previously unutilised muscles can work when the tightness lessens. You must get out and move them. They won't get stronger by themselves. If you don't use them you feel weaker and they can groan a bit when first mobilised.
I do need to get that blood pressure down so the Baclofen deserves another trial.

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Re: Beyond Avonex and Valtrex

Postby Scott1 » Fri Jan 08, 2016 4:22 am

Hi.

It's now 10.20pm and the blood pressure is climbing again.

The last measurement is 149/84 with a pulse of 85. I will take Baclofen tonight rather than magnesium and we will see.

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Re: Beyond Avonex and Valtrex

Postby Scott1 » Tue Jan 12, 2016 2:48 pm

Hi,

Well something happens when I maintain the magnesium at 3x500mg and 5mg of Baclofen before bed. Initially no benefit was derived. The diastolic, in particular, was too high and flopped around between 86 and 98. Now its back to 76. The systolic gets a benefit from the lower diastolic number but its still a little high around 126 but better than the 133-146 I was producing a week ago.
Baclofen is back for me and magnesium is in...but not together( at this stage).

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Re: Beyond Avonex and Valtrex

Postby Scott1 » Sat Feb 06, 2016 3:56 am

Hi Again,

Well, it's been an interesting month. I think I have found a good mix now. Whilst it is about my blood pressure I think it is also about my issues with spasticity. After my big attack in 2014 I guess it's fair to say I have a spastic heart muscle. The high diastolic number is all about how much the muscle relaxes between beats. Generally. it's not relaxed enough hence the number often reads higher than 86. This, in turn does influence the systolic number as well.
I noticed, initially, that baclofen did drop my reading but not by much. I had a lucky spurt when Magnesium was introduced but then it started to creep up again. This left me scratching my head.
Eventually I realised that as it was Christmas I had often not taken my Q10 as I was away. When I religiously reinstated it the numbers began to improve. I also felt better. So many functions are ATP dependant and this helps that.
In a stroke of madness I increased my evening baclofen to 10mg and had no trouble handling it. It could be that I am becoming accustomed to it but it could also be that I am more tolerant as my magnesium levels rise. I now take magnesium and baclofen before bed. The sleep is incredibly deep.
There was still a tendency for the diastolic to soar which was always uncomfortable. In the end, I decided there was no use taking a potassium channel blocker (baclofen) if I didn't have enough potassium. I started gutsing bananas and avocados and the readings improved. The worst feelings of high blood pressure abated.
I still felt that the blood pressure was too high so I stepped outside the box again and introduced a flushing niacin tablet (250mg) before breakfast. I flush red like a fire truck! The real benefit though deems to be that my readings are more even throughout the day. They used to fluctuate quite wildly. Now I am a fairly consistent 133/77 or better, rarely worse, and the trend is improving slowly.
None of this is definitive but we need to modulate our calcium usage. I can see it influence my blood pressure but it could be any muscle group that's affected.
I feel better and looser if I take magnesium four times a day, eat potassium rich foods, take Baclofen and use a flushing Niacin. I still do all the things I mentioned a bit earlier but with these additions I can objectively measure with a BP pump and I know how I feel.

Overall, my body is more supple. I can have periods of tightness but the trend is better. The only thing I noticed is when the magnesium was introduced my muscles felt weaker and I had the same issue when I added the Niacin. It only lasts a few days. You feel like an astronaut who has returned to Earth after six months in space. Exercise is the right way to fix it.
Hope someone finds these observations of use.

Regards,
Regards,
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Re: Beyond Avonex and Valtrex

Postby Scott1 » Sat Feb 13, 2016 2:37 pm

Hi,

More problems! I thought that the niacin would help but instead I developed arrhythmia. I stopped taking it and the arrhythmia cleared up. Additionally I would have little bouts of feeling unwell but a small bottle of apple juice cleared that which made me think something was wrong with my blood sugars. Valtrex has been reported to cause hypoglycemia so I stopped taking it and added a little extra sugar into my diet and I generally feel fine.
The only problem is my blood pressure readings have soared and now I am 151/90. I did have one day where I got down to 119/79 after having an apple juice. Now I am wondering if I am a little hypoglycemic and perhaps after nearly 20 years on Valtrex I am pushing it to keep taking it. I am convinced it's antiviral properties did me a lot of good but a gram a day for that long is really out there.
Now I need to see if I can sustain a lower blood pressure and rely on a protocol without Valtrex. I'm sure my cardiologist will be at me with a medicated route.
The magnesium has really helped with muscle tightness. I am really quite flexible (for me) now and a massage doesn't hurt like it used to. My strength is really good as well. It's just the blood pressure now.

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Re: Beyond Avonex and Valtrex

Postby Scott1 » Mon Mar 07, 2016 7:29 pm

Hi,
My high blood pressure remained unresolved so I have succumbed to the advice of the cardiologist and started using an ACE inhibitor. Maybe it’s just life and it is not uncommon.
The good news is he did some tests which tell me where I am now and the report does cover previous tests back Oct 2014 when I was in hospital. This is an objective measure of what I look like over time (to a cardiologist).
S. Sodium 144mmol/L (135-145)
S. Potassium 4.5mmol/L (3.5-5.5)
s.Chloride 104mmol/L (95-110)
s.Bicarb 27nmol/L (20-32)
s.Urea 6.2nmol (3.5-8.5)
s. Creat. 96 umol/L (60-110)
eGFR 75
s. T-Bil. 3umol/L (4-20)
s. ALP 74 U/L (35-110)
s. GGT 15 U/L (5-50)
s.ALT 26 U/L (5-40)
s. AST 24 U/L (10-40)
s. T-Protein 70 g/L (63-80)
s. Albumin 42g/L (34-45)
s. Globulin 28 (26-41)
There are a few random, dated measurements.
In October 2014 I was full of prednisolone and that gave me a 60 for s.ALT but it was a one off. They queried the eGFR but weren’t fussed if it was stable over time, which it is.

What it does show is what I do doesn’t do harm when measured for thyroid disease. Essentially I have been very stable. Always good to know.

I assume the valacyclovir does no harm after this review.

Regards,
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