Beyond Avonex and Valtrex

[Interrupted]

Thank you, that was a ruddy helpful answer and gives me a clear plan of attack

The doctor was actually more useful on the current problem than expected. He could feel the 'shot pellet' glands and put me on penicillin rather than amoxicillin (as I requested, because penicillin usually sorts my tonsil/throat issues for a time *ahem, strep*) and if they don't rectify the issue will send me to another ENT. He was however, as expected, not forthcoming on the testing. It's a funny thing with penicillin, the first time I took it, the smell made me nauseous and it gave me massive headaches. Now I find that I crave it and love the smell when my throat/tonsils aren't happy. Probably psychological because it's worked before.

Interesting to know about the val/avonex - to be honest i'm so iffy about the Tecfidera now that I think i'll punt for what's worked so well for you for so long and scrap the Tec for Avonex.
I was on the Wheldon ABX for a year and a half and i'm happy to keep up the Doxy/NAC to control any potential ongoing CPn, as I mentioned, that never showed up on testing for me though.

I'm just starting to again mull over having the tonsils out. I know I can and have approval to but all the ENT's i've seen before have swayed me against it. I guess because all they can actually see is a problem with tonsil stones and not necessarily that there may be a 'nasty' lurking behind it. Before the bouts of tonsillitis I has when I originally got ill, i'd never had tonsillitis, that, to me, tells me something. In the same way i'd never really had a bad stomach. Ditto.

D was low on last check, but I do supplement that every day. Never really been too sure that I throw as much weight into the importance of it as some believe but I do supplement anyway.

[Scott1]

Hi,

Having your tonsils out won't be funny. What they don't want to tell you is how painful it is. There is also a thing called the 10 day bleed (ie . about day 10 not for 10 days)where you can trickle blood from the cut down into your stomach. About the only thing you can't digest is your own blood so it just sits inside you till you throw it up. if it happens you'll be back in hospital. That's what happened to me. Whether that happens or not you will hate me for a long time and never say nice things to me ever again. Its horrible which is why they are reluctant. Not for sissies.
Good luck with the Avonex. I never ever enjoyed it. Be careful with the dosing on Valtrex if you try it as something in you doesn't like it.
Regards

[Interrupted]

Go on, what was the horror for you with Avonex? I tried it for a brief period many years ago and the only thing I vividly remember was the headaches.

I just don't know what else to do, to be honest. It's like picking the lesser of evils (vs Tecfidera).

[Scott1]

I know. It makes me want to swear but you're nice, I'm old and children might be listening.

When I first started on Avonex it was a very basic product. It came with two needles, two vials and you had to mix it up yourself. They have improved on that. The first time I ever took it I experienced rigors, sweats, chattering teeth, extreme muscle pain, headaches, a heart that thumped as though it wanted to jump out of my chest plus the "mild flu like symptoms". I persisted and started to take 8 Panadol in a 12 hour period to manage the discomfort. It was always hard work for me but noticeably became easier when I introduced Valtrex. I guess, for me, whatever was prompting the big reaction was weakened by the valacyclovir. Your experience might be different. Some people have no reaction.
The man who put me on Avonex was good at identifying I had MS but his understanding of what he had prescribed for me was minimal. I was the first person in Australia he ever prescribed it for. When I needed a new script he just posted it to me and never found out what it was doing to me. I found someone else after that but soon realized they were all the same.
The interesting thing was he told me it was an immune modulator and that MS was exclusively a genetic problem but the leaflet in the early boxes said each injection contained 1m i.u of antiviral activity. So his explanation made no sense at all.
Interferon is basically a signaling agent to alert the immune system. The more things the immune system suddenly sees the bigger the reaction. Perhaps your current antibiotic regime will help make it more tolerable. You won't know till you try.
The more I think about Buhners book the more inclined I am to try a protocol. I won't give up the antivirals or antibiotics but I am really uncomfortable with the lack of understanding about Tecfidera in published works.
If they said a bunch of smoking leaves waved under your nose by an archbishop shifts you from Th1 to Th2 would you believe that? That's about as detailed as the work on Tecfidera seems to get and they say it upregulates BCL2 and may cause PML yet we should ignore those things. It really is amateurish.
Avonex may help but I think it is better in combination with other things. Hopefully it is easy for you.

Regards

[Interrupted]

Well, my response to Valtrex clearly hasn't changed. Remembering what happened last time, I decided to halve recommended dose and take 2 x 250mg/day. Took the first one three hours ago. One hour later heart was pounding, gasping for air and dizzy as heck. Exact same response as before. It's starting to calm down now but doesn't half make me curious as to why it so quickly yields this dramatic response.
Could be good if means it immediately zeroes in on (a) virus(es) and gets to work straight away (on my heart, apparently).
Could be bad if it's an allergy/side effect response, meaning I really shouldn't take it.

So i've been doing incredibly badly the last week and just as an FYI, i've currently added Inosine (500mg), Arginine (500mg) and Pregnenolone (50mg) to my daily intake, for those who have any interest. Going full force on the anti-virals.

Will be phoning to cancel the Tecfidera decision and ask for Avonex tomorrow. Had trouble getting hold of my nurse.

[Scott1]

OK,

Valtrex, at this stage, is not for you. It is a dramatic response and we aren't qualified to pick up what might be going on.
Before you took the Valtrex, what was happening in your bad week?

Regards

[Scott1]

This is a copy of some FDA notes on Valtrex. (http://www.accessdata.fda.gov/drugsatfd ... 014lbl.pdf )

Perhaps you have a negative reaction to the active ingredient or a filler, a contraindication with another medication, a renal problem or another infection really reacts badly when you use it.
Have a look at the note when you feel up to it and see if anything rings a bell. If its a contraindication then we might find it, if its something else (a bug, an allergy etc) we probably wont. We may find something safer in the flavonoids you can try.

Regards,

[Interrupted]

The trouble is, if I don't take it i'm doing nothing. I've done nothing for far too long and the switch to SP, seem to me, to be occuring.
I cannot get the tests, I don't have the money, I don't see what else I can do. This evening's one, the bad tachycardia only lasted half an hour, which was better than this morning.

Contraindications: It states only Val & Acyclovir allergy, which obviously I can only test now. The other ingredients, I wouldn't have a clue about. I have no known allergies, other than to cats and Michael Buble.
One alternative would be to try the Acyclovir instead, see if it does the same...?

Over the week, i've been partly bedridden through loss of power and touchy consciousness - general things... had gravelly neck glands, extremely sore throat, vertigo, vision problems, light intolerance, migraines, sharp earache (shooting from glands), worsening of every limb and extremity (pain, weakness and numbing), fire in my lower back that's left me unable to sleep, random sharp pains all over my stomach and pelvis, and lord know what else. A lot. Today has been a tiny bit better but still left with swollen feeling neck, earache and vertigo.
- It has undeniably been bad, bouts of severe depression, very much not me. I do the annoying eternal optimist (denial) better normally. Just testament. No idea how I got that assignment done!

[Scott1]

Can you get into a hospital for any treatment at all? If they can smack it down with prednisolone, like they did with me, it will buy some time. I found a site with a link to contacts in the UK for Lyme. If the conventional people wont/cant help maybe you can get a local lead from there- ( see http://www.lymediseaseaction.org.uk/contacts/ ). As we discussed, you sounded like classic Bartonella.
Be an optimist. It's not denial. Friendly doctors can be poisionous and friends can be two faced. There are other people wishing you all the very best and thinking of you often.

Regards

[Scott1]

After my recent attack I had been on a beta blocker, a blood thinner and Tecfidera. With increasing frequency I found myself feeling dreadful like my blood sugar was plunging. A small bottle of apple juice would right the ship.
Today I cracked it and reported back to the hospital out patients. After consulting the cardiologist and neuro who prescribed my medications the doctors took me off the blood thinner and the Tecfidera.
It will be interesting to see what happens! Hopefully, nothing at all and I will feel better but we will see.
I think there is a bit of value in using the hospital outpatients as an independent arbiter. I would be waiting for ages to see those two by appointment. This was a very quick solution.

Regards

[Interrupted]

This morning's led to very little rapid heart, good progress. Just being a bit of a zombie with drop feet.
I'm guessing it might be blood pressure as I get the whooshing in my ears and dizziness, if I can ever find my BP machine i'll test the theory.

I really don't want to take prednisolone, it sends me doolally/hallucinatory and stresses the hell out of me physically and mentally. I feel a bit like any good it's doing has to be counteracted by the stress of enduring it. I have only tried IV at half dose but do have a round of tablets 'just-incase' but no, preferably not unless absolutely necessary.

Sounds good, i'll email them and see if they have anybody in the midlands - thanks

The apple juice was all it took? Will keep everything crossed for you that it settles down.
Interesting - I actually like being on blood thinners and wouldn't mind being on them all the time. Well, the clexane/innohep type, I get less headaches when on them, but do get the same ear whooshing as the Valtrex gives me.

[Scott1]

The prednisolone can play havoc with your blood sugars. Initially mine shot up so they put me on a diabetic diet for a while (much to my disgust) and then a week after I came off it, they plunged. My recent experience was the same as I felt when they went too low so a bottle apple juice seemed to give me enough to feel better for a while. I don't know which medication was causing it recently but today will be the first day that's semi normal as I am still on the beta blocker. I already feel better in myself but we will see.
Perhaps your reaction to prednisolone is related to blood sugars being awry. Or it could be the non active ingredients you are reacting to. When I was first given IV pred I developed a bright red rash over my whole body. The doctors were astonished but checked the book and the fluid agent they had it in could cause that reaction. They stopped straight away and gave me oral pred which made my stomach feel like it had been ripped to shreds.
I am trying a bastardised version of the wahls diet which is fat high and sugar low so maybe that contributed to my sugar dip but I don't think my application is pure enough to have caused the swings I experienced.
I really cant make a decent yoghurt from coconut milk! Wahls approach is just a paleo diet with a few twists but cutting out dairy and crop grains makes sense.
Your heartbeat still sounds like a reaction. It reminds me the racing heart I had from early childhood till around the age of twenty. I know what it feels like but it stopped happening to me. When I was young I lived in the country and you mucked around with horses. Maybe we have been bitten by different things ( a tick type inset)that can produce a similar symptom. I hope you find something (Bartonella etc) as then it can be addressed.

Regards

[Scott1]

Well, I reached the end of the first day without Tecfidera and my blood thinner. I already feel much better. I don't know which one to blame. My impression is the blood thinner may have impacted on my energy levels and the Tecfidera made me sore through the torso. (just a guess)
In the early part of the day the change wasn't so noticeable except for better mental alertness. Now, at 9.40pm, my time, my body feels more normal as well.
I went though a pilates session today which was fairly basic compared to my past but my technique was more refined than the last few weeks. Now my torso is feeling better it helps my balance. My hands are still experiencing altered sensation but it is diminished. I really wanted to blame the medication for the hands feeling funny as I noticed every time I had a "sugar dive" my hands felt worse. Maybe its just coincidental. I will never really know.
The other thing I have done is make some alterations to my diet. I read the Wahls protocol but don't think I will ever follow someone else's recipe for life. I'd rather just look at the big picture. Some things interested me. In particular cutting out dairy and gluten. It wasn't a big ask for me as the only dairy I had was a bowl of yoghurt and I have never been a big grain eater. Except for my favourite pizza I won't miss them. Eggs are still in for me.
Her use of saturated fats appealed as I like meat as I always feel good when I eat it. I have always eaten animal fat much to my wife and family's disgust. Avocados are in season here so they are cheap and I like them. Plenty of good fat there.
Eating berries sounds like an indulgence but blueberries are in season so I eat a punnet in the morning and a punnet after dinner so I feel like I'm living like a Lord. The principle of picking fruit and vegetables where the colour goes right through means I will generally eat the ones I like anyway. 9 cups of greens is a challenge but I have discovered Kale which I don't mind.
I do like the coconut milk idea. I tried using it in fruit smoothies, making a crappy looking yoghurt (help someone!!) and obviously it works in a curry. My wife made a runny fudge using lots of allowable fruits, cocoa and coconut milk. It took a day for the flavours to meld but its ok.
I presume I am in or approaching a ketogenic diet. If I haven't lost weight, people think I have around the face and my skin and colour look and feel healthy. If my skin is better then why not say my myelin should also benefit. I'll know if my hands improve more rapidly as I will have started to remyelinate.
I discussed earlier the nature of MS myelin being immature and like a childs. Moscarello and colleagues are chasing the component of MS myelin that causes it to stay soft. Maybe Wahls has found a good substitute in the coconut oil for overcoming that. Who knows but she did get out of her chair!
Her other big observation was offal provides a rich supply of coenzyme Q. I have been gutsing down Q10 supplements for years. My latest MRI pointed out there was no shrinkage of the brain and I know I did well on the cognitive tests. The thing that I didn't worry about all through the attack was fatigue. It was not an issue for me. I think this is the long term benefit of Q10 and it highlights to me that something (I assume peroxynitrite disabling glyceralderhde-3-phosphate) affects the respiration of cells and Q10 offsets that.

Not having to worry about fatigue leads me to surmise that the demyelination from an inflammatory attack is separate from the problems of peroxynitrite so we must have more than one mechanism at work. That inflammation is activating Th1 and I described how that turns ugly first hand earlier on. If Terry Wahls overcame a progressive form of MS she is clearly controlling an inflammatory cycle. If her principle is a ketogenic diet so we derive energy from fats not sugars aren't we also starving any bacteria that is sugar dependant? Was a bacteria the trigger for my inflammatory attack? Will I improve if I continue my modified diet? Was Tecfidera a contributing factor to moving me from Th1 to Th2 and will I stay there? Avoiding a cytokine cascade is the top of everyone's wish list.
All things to ponder, I guess. We will see.

Regards

[Interrupted]

Didn't Terry Wahls also have chemo?

Odd morning, up and down. Turns out i'm JCV Positive. So that's crossed most vaguely effective treatments off the list regardless.
I also got 94 % for that assignment. which is a a small miracle considering I can neither type or see particularly well!

Glands also reinflated, limbs seized again and feel quite drunk (if only) so back to docs again this afternoon.
Also heard back from virus guy and he says he can do ebv, cmv and mycoplasma screen. Think I only need the latter really, the first two were done recently. So will go for that.
He reckons that any time over 4 weeks on Doxy would have dealt with Lyme/Bartonella. Not sure we agree on that one.

[lyndacarol]

Turns out i'm JCV Positive. So that's crossed most vaguely effective treatments off the list regardless.

I read all kinds of material, came across the following in the last couple days. I cannot vouch for its accuracy (It sounds a little far-fetched to me.), but I wonder if it is possible for coconut milk (or, better yet, coconut oil) to turn a JCV positive person to JCV negative (Is the JC virus lipid-coated?). Just food for thought:

Coconut Milk
Coconut milk is made from the expressed juice of grated coconut meat and water. About 50 percent of the fat in coconut oil is lauric acid, which is rarely found in nature. Your body converts lauric acid into monolaurin, a monoglyceride that can actually destroy lipid-coated viruses such as HIV and herpes, influenza, measles, gram-negative bacteria, and protozoa such as Giardia lamblia.

Lauric acid is a type of medium chain fatty acid (MCFAs), which is easily digested and readily crosses cell membranes. MCFAs are immediately converted by your liver into energy rather than being stored as fat.


Edited to add: Coconut begins to sound like the "cure for all diseases." Consider the source: Coconut Research Center http://www.coconutresearchcenter.org/


Fun Science Facts from the Library of Congress: http://www.loc.gov/rr/scitech/mysteries/coconut.html


Coconut Oil and Alzheimer's Disease (I first heard of Mary Newport, M.D., a few years ago.): http://www.anh-usa.org/coconut-oil-and- ... s-disease/


The intravenous use of coconut water (January 2000): http://www.ncbi.nlm.nih.gov/pubmed/10674546