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I think most but I'm not sure about methylmalonic acid. I think they may have added some others but I'll post them when I see them.
They did a battery of psychological tests today to check my cognitive processes. A lot of memory and pattern recognition stuff that wasn't easy. I seem to have them stuffed as I did well and I'm atypical after 20 years!
I quite like being institutionalized; three nice meals, bed gets made, get exercised, don't have to make decisions , etc. In my next life I think I will came back as a family dog. Its a good life.

Regards

Hi,
Here are the test results for those who are interested. What immediately stands out is elevated S ALT (60 vs range 5-40) ALT is Alanine Transaminase which is an enzyme produced in hepatocytes (the major type of liver cells). ALT level in the blood is increased when hepatocytes are damaged or die. I think its probably influenced by the heart medication. A liver problem is not confirmed by the other results so I'm comfortable with that. The other result you will leap on is Vitamin D at 47nmol/L (range 50-250). I acknowledge its low but I haven't been comfortable with the current debate on Vitamin D for a long time as I believe if you don't upregulate RXR by loading with 9-cis retinoic acid (via carrot juice) then you are wasting your time with D levels as VDR works in a complex with RXR. I haven't had any carrot juice for three weeks now (aren't hospitals grand) so I'll just start on carrot juice when I am paroled.
Here's the numbers
THcy 7umol/L (range 6-15)
25OH Vit D 47nmol/L (range 50-250)
RBC Folate 1488 nmol/L (range >800)
S total B12 302nmol/L (range 200-700) note its not an active B12 or Holotranscobalamin test
S T- BIL 6umol/L (range 4-20)
S ALT 60 U/L (range 5-40) I'll blame the heart stuff for that
S GGT 36 U/L ( range 5-50)
S ALP 74 U/L (range 35-110)
S AST 19 U/L (range 10-40)
S T-Protein 64 g/L (range 63-80)
S Albumin 37 g/L (34-45)
S Globulin 27 g/L (26-41)
The next set were done twice (29/09/14 and 07/10/14) they were pretty similar both times except S. Urea came up a little from 6.0 nmol/L the first time as did S Bicarb. (who knows!)
S Sodium 144 nmol/L (range 135-145)
S Potassium 4.1 nmol/L (range 3.5-5.5)
S Chloride 103 nmol/L (range 95-110)
S Bicarb 29 nmol/L (range 20-32)
S Urea 7.3 nmol/L (range 3.5-8.5)
S Creat 94 nmol (range 60-110)
eGFR 78 (no range given)

There are other tests relating to the heart issues from a week back but they appear normal which lends weight to the idea that my MS hug was the cause of my atrial fibrillation rather than a systemic problem.

Regards

Hi Again,

There's been a lot of chatter in the last few days about gut bacteria, in particular methanobrevibacteriaceae. They are part of a group called Archaea (see http://en.wikipedia.org/wiki/Archaea ). They have cell walls made of pseudomurein. (see http://en.wikipedia.org/wiki/Pseudopeptidoglycan ) which is made of N-acytl-glucosamine and other stuff. It tends to add weight to my argument that I made a big mistake taking that stuff.

Regards

Hi Scott,
Well, your homocysteine and RBC folate look good. However, your B12 is a little low. A value of 302 nmol/L coverts to 409 pg/mL. It would be good to be up near the top of the range around 800-900 pg/mL. In addition, as your doctors have probably told you, your D3 is pretty low. A better D3 value would be up around 100-125 nmol/L.

Hi,

Here's one more observation; everyone told me I had lost a lot of weight so I checked. I had been stable at 82kgs for years and wasn't overweight. In hospital I ate like a lion. Now I weigh 76kbs. Its a big shift I didn't expect over a 3 week recovery.

Regards,

Hi Scott,

I'm glad to hear you are still being a fantastic pioneer!
I remember chatting to you on here years ago when I finally got hold of some Valtrex for a short trial as I was always convinced it was the answer for me. You helped advise like a superstar but unfortunately it did not go well, it knocked the stuffing out of me and, quite frankly scared me, but I think we ended in agreement that it probably was major herx'.

Anyhoo that was 2011 and I have never since managed to find a doc' or neuro' to prescribe for me so now i'm 3 years on and realising that i'm going to have to go this alone. Therefore I need to catch up with your updates and try and understand as much as I can. If you would read this and lend me any of your 'gut' reactions to my 'MS/CFS' experience so far then i'd be more than grateful. I can't read very well anymore so reading through all the posts will take a while and my brain is not currently in very good shape!

My Story: I got ill pretty quickly 14 years ago when I was just turned 20. I had never to my knowledge had EBV or anything else major, really. Just prior to a sudden onset of hell while I was on holiday in Portugal, I had recurrent bouts of tonsillitis (EBV link?), then while on holiday I had sudden chronic 'IBS', dizziness, depersonalisation and lethargy. And from that week on I have declined. For 5 years they thought I had CFS, CBT didn't work so eventually one MRI and one LP later it's MS. Slash CFS. The actual MS symptoms took quite a while to become evident. I am theoretically RR, but rarely have had a 'relapse', thus I qualify for very little in terms of treatment. I just seem to have this cycle of CFS type illness that results in something MS'y going wrong, then a slight improvement, but overall I would say i've steadily declined the whole 14 years. So now i'm 34 and pretty screwed.
My left side is extremely weak, I have constant crucifying migraines, am extremely depersonalised (like watching life on a tv screen/tunnel vision), have ON damage, constant exhaustion, confusion, I can't feel my fingers, I get tachycardia, get very faint, everything hurts, temperature regulation is crazy, feel like I have trouble breathing, my glands are up and down like a bash-a-mole, my sporadic 'iffy' legs are definitely becoming more perma-Bambi legs and my throat has been sore and my stomach unpredictable the whole time i've been ill. And things NEVER show up on tests. I'm always 'normal'. Then two weeks ago I lost the ability to talk in sentences, it came back but that was the last straw. The cognitive stuff is scary. I'm at a very bad point and I can no longer wait for medicine to catch up. I have had CCSVI treatment (nada), done the CRAB drugs (all tolerated very badly) and a year and a half on one of the ABX protocols (also nada).

A while ago I had viral tests by a microbiologist and EBV and Lymes came back negative but it was either HHV6 or 7 was positive. Now I know I have Simplex (coldsores) but recently my neuro' has re-tested EBV and CMV which i've yet to get the results for but i'm pretty sure the EBV result did show previous activity.

Currently I take; Naproxen and Sumatriptan as I need them, and Cholstyramine (Questran Light) every day.
Supplements wise; Vits C, D3, B Complex, B12 (Methyl Cobalamin lozenges), B6, Glutathione, SAME, Flax Oil, Q10, L-Lysine, Selenium, Phos Serine, Folate, Lycopene, Zinc, Turmeric, Cinnamon and a good few Chlorella Vulgaris tablets every day. As you can probably see, i'm on as much of the Myhill Methylation as I can afford. I also take lot of good quality probiotics.
I juice most days, always a bag of carrots, a couple of apples, a chunk of ginger, coconut water and a bag of spinach.

Now I have finally got hold of Valtrex by, err, some means (it may have to be Acyclovir in the future). But I need to get tackling this.

My neuro has offered me Tecfidera, but i'm not sure about this. Do you think Avonex, Tecfidera or both? (with the Valtrex)

Also, since my reaction to the Valtrex was so violent last time, I was hoping to start on just either 2x250 or 1x500 a day. Is that enough? Last time I took 2x500.

I will start on the morning L-Arginine as soon as possible.

Any guidance and thoughts as I broach this is, as ever, grateful appreciated because i'm well aware that my ability towards the 'science stuff' is pretty bad!

Hi Interrupted,

I do remember you very well. I'm sorry to hear you are having a rough time.

You may have followed from my notes that in spite of all that I did I managed to have another attack. This made me think about multiple paths. In the past I really focused on EBV related paths but my most recent attack was different and I can see elements of it in your note. Without the detail I think you have signs of demyelination and inflammation. Tecfidera makes sense as it will shift you (hopefully) from having your T1 helper cells arced up to a calmer phase. It doesn't cure symptoms but it should help. I think you may feel worse on Avonex if you have other underlying issues. Lets try to slow the inflammation first. If it is acute I would do 3-5 days of IV prednisolone. No shame in that. It will calm things down. I am deeply suspicious that the walls of gram positive bacteria activate Th1 (cant prove it) . I am also taking an antibiotic that attacks those walls. I use Zinnat but there are others just as good. Tell your doctor you would like to try something like that. If he objects ask him what causes MS and how do the drugs work. His answer, if he is truthful is he does not know! So maybe try something else.
The one thing I would drop from your protocol is the Lysine. It upregulates EBV. The turmeric is good but try for the active ingredient which is curcumin instead. I would also try a concentrated form of green tea extract.
What part of your problem is simply that we don't know what we don't know. Your doctor needs to test again for EBV, CMV, mycoplasmas, rickettsias, chlamdiyas and Lyme. The last test might be expensive because the basic tests often miss it. If you're in the Northern hemisphere you might have a better choice than we do.
I think you need a stint in hospital and get them to slow down your attacks just to give you a breather.
Lets see if we can arrest the attacks first and start looking next.
Hope this helps and do stay in touch.
Regards

Hi there, and thank you for replying so quickly

Yes, a real shame and I was sorry to read that you had. I think it cannot detract from the positives you have experience for a very long time to this point, though? I have no doubt that there will be more to this as we are physiologically so complicated, much like the viruses and bacteria we meet. How did you feel that this attack was different?

A problem that I have with docs/neuros is that i'm rarely offered anything. These regular low grade attacks don't really qualify on their scale as an actual relapse, thus I doubt I would be given IV steroids (they would say it's too late and not severe enough anyway). I do have a batch of oral Prednisolone for emergencies but I confess that i'm loathe to take. I tend to react terribly to anything and everything, i've twice tried IV and both times ended up a jittering, hallucinating wreck after 2 days of it. It's odd but right now, I feel more like i'm sick than having a pure relapse, and the MS that's kicking up is a result of my body and immune system being so low. For that whatever that unidentifiable reason is.

I was rushed into hospital two weeks ago when I had the dysphasia attack because they were worried it might be a stroke, I was kept overnight but as it resolved and all obs were normal (as always), I was discharged the next day. I feel very much that I have no help or any type of doctor to turn to, to be honest. The GP defers everything to my neuro and my neuro has his hands tied by red tape and cannot do or prescribe anything for me. He is open minded, thankfully, but has pretty much held his hands up and said that there's nothing he can do. The trouble is, if you can walk in, and look healthy despite all the invisible hell, you can pretty much guarantee you'll be walking out with no help 10 minutes later
I managed to do the ABX protocol for so long because I found a microbiologist who had treated his secretary using the protocol (Doxy/Azith/Metro) but he was totally closed as to which ABX he would prescribe so, unfortunately when I struggled with one (Metro), he would not prescribe the advised alternative. Without him, i wouldn't have got the ABX at all, and now I don't have him anymore, I know there is zero chance of getting hold of anything (on the books, at least!)

Oki doke, the Lysine is out and I will switch to Curcumin, and add Green Tea Extract (drink a fair bit) no problem.

I will have recent results for EBV and CMV when I see my neuro' next month, i'll ask him if I can re-test the others, i'm pretty sure he will say no because he has no reason to or evidence of likelihood (go figure).

I totally agree with you, I need to slow this down and sure wouldn't mind a hospital stay if it meant sorting this out but I have no help. I suppose hence why i'm keen to give the Valacyclovir a good shot, especially because my throat and glands are heftily involved in what is currently going on. My GP did give me a week of Amoxicillin last week because my ears were hurting and had fluid behind one ear drum, but that made no dif' and was let's face it, a rather tiny elastoplast! haha

Ok, I really didn't know what to make of the Tecfidera when he bought it up because I really don't understand how it works and have a clue if it could help me or not, being someone who doesn't have the big relapses and is more like a hobbling CFS advert. But if you think it might work ok alongside the Valtrex, i'll give it a go. It will be an interesting one to see if I can tolerate it, I have my doubts having read the trouble that so many others had but no harm in trying!

I'm suspecting that I need to win the lottery to be able to afford a swayable private doctor, by the sounds of it. And I meant to ask, do you know if acyclovir alone would do the same job as Valtrex? (it's a heck of a lot cheaper!)

Thank you, once again

Ok,

So the throat and glands are up. Does that mean your neck feels like it has steel bands in it or is it like a sore throat?
What was the reason you were give a supply of prednisolone tablets?
You have EBV tests coming back but have you been tested for any of the other things I mentioned?
Tell me about your iffy stomach. As much detail as you can. Is your bowel action normal?
I know your not mad but tell me what your body feels it is doing. Don't use descriptors like "rotten, bad, etc". What does your torso feel like, tell me about the tightness in your legs. Where is it worst? Does your body feel heavy or normal. Are you sore somewhere but not elsewhere. Is sensation altered in certain areas. Are you just stuffed all day or better some times?

Another thing I found very helpful was a big dose of coenzyme Q10. Have you tried that to date? If you did, how did it go?

I'm a bit worried you have a catalyst that's elevating an inflammatory reaction. If prednisolone is an issue I'd would take the Tecfidera offer. Some people can struggle when the go from the starter dose to the high dose but it might be transitory.
I think you may have layers of issues but we need to settle you down first.

Regards

Ok I will forget things that i'm not experiencing right no but i'll do my best...

-Glands go up and down, needle sharp sensations and usually sore. They feel huge but aren't. They ache and get shooting pains from gland to ear. Usually in rotation from one side to the other, often switching daily.
-The sort throat is mainly around the tonsils, the tonsils aren't big but they are pitted and I get tonsil stones a lot when they are swollen. It doesn't feel like a band, it feels like constant irritation and swelling. I tend to have a 'bumpy' texture t the back of my throat, which one GP once told me was usually due to viral problems rather than bacterial ones. Often what feels like tonsillitis doesn't look like it, yet penicillin does seem to help...
- Overall in the body, I lack power and energy. I suspect that I run on adrenaline because my body just does not store or create 'healthy' energy. Thus a rush/crash cycle is the norm. It does feel like atypical CFS flu.
- My left side is a lot weaker and has less sensation than my right, from head to foot.
- My extremities usually feel very cold to me, especially hands/fingers, toes and nose. I shiver and shake one minute and the next can't stop sweating from overheating. My body temperature is always normal, however. My bad side (left) arm and hand feels like it has frostbite (it's colder to the touch too), it's more leaden and aches from numbness (polar, I know).
- My legs are weak, from the knees down they rotate between lead, numb and burning sore. Often I walk but I don't know how because I can't feel them. I get muscle burn in my thighs but less numbing. The only thing that spasms is my butt muscles. Can be quite funny...
- I will often get apres-hard exercise type muscle burn right through my entire body, from doing nothing.
- My breathing/rib cage is an odd one. I get mild MS hug occasionally but usually my breathing trouble goes along with tachycardia and sometimes blocked sinuses. It just 'feels' like I can't get enough air in. There is no hyperventilation or panic attachment. In fact it's often when at rest or sleeping.
- My lower back seems to be the root of the leg trouble, it has a sensation of 'aching weakness' that goes along with almost permanent l'hermittes sign (right from base of spine to top of neck). Basically if my lower back is riled, my legs are bad. Yet my pelvis and bladder control are fine. I get a 'fire ants' sensation down my whole back while lying in bed.
- Gastro-wise, my body rushes food through way too fast, it doesn't digest properly and seems to produce too much acid/bile. The only thing I can do is take Loperamide to block it and Cholestyramine to bind the bile. It helps but it does not fix the problem and this has been permanent since day one of illness.
- My head/brain are a minefield. I get very bad migraines, they feel optic in origin and favour one side at a time. As many as three or four a week, lasting about a day. Before Sumatriptan they could last up to a couple of weeks. I ALWAYS get a little nodule that swells up and itches on the back of my neck/base of my skull when I get them. They go along with tightness and soreness in my neck and extreme pressure in my skull. also get stabbing sensations in my brain. Feels like a knife. Very sharp and very strong, at random intervals for maybe half a day, once or twice a month.
- I have the sensation of pressure in my head/brain and behind my ears and eyes continually. Trepaning to release it has been a thought(!!).
- I have had a few bouts of ON and my vision has been affected with grey patches and light/colour differences. I am very short sighted and extremely photosensitive. I spend most of my life in sunglasses. I am not a rock star, unfortunately.
- My levels of consciousness can be quite a problem, i'm rather a 'space-cadet' when really suffering and do verge on fainting quite a lot but i've learnt how to rescue myself, though this is getting harder.
- My blood pressure verges on low, thyroid is allegedly fine, I do 'see red' and get very faint when I move from sitting or laying to standing.
(hope those explanations helpful - it is very hard to paint an accurate picture with these things!)

- Sometimes i'm stuffed all day, usually I get an hour or two of vaguely functioning but that's it really now. Six months to a year ago, it was not like this. I could run on adrenaline if I had to for a full day, maybe two, and then just pay for it for the next week. Now I cannot do that.

I was allowed to take a course of Prednisalone home when I was having trouble with my legs a couple of months ago. They didn't want me to take it and didn't think it was a proper relapse so it would be pointless, but said that I could if it got worse. It got a bit better, then worse, then better, then worse... etc etc each week after, 'til present. I felt that I had a viral or bacterial problem going on that the stress of the side effects of the steroid may not have helped. Especially without a sense of hope that they would do anything anyway, from the docs reluctance.

I take 100mg CoQ10 daily and have done for a long time, i'd rather take the Ubiquinol (and higher doses) but the stuff is insanely expensive. I can try a big dose once in a while if I have enough.

When you say catalyst, what sort of thing are you thinking? I mean, I couldn't agree more, there definitely is something.


[EDIT] Just speaking to a friend, I think i'm going to try the natural route over Prednisolone andf try Pregnenolone. Just ordered it.

Out of interest, when you relapsed, were you still on the Vatrex/Avonex?

Thank you,

That's a great description. Here's one last wacko sounding set of questions.
If you stand in front of a mirror and have a good look at your tongue what do you see. Is it clear or coated? If coated what does it look like? Is it different on the edges compared to the top? Is it red? Does it have bumps or cracks. Do you get little ulcers inside your mouth (or skin peeling off inside the mouth).Do you have a taste in your mouth or is it just a normal sweetish salvia you don't notice? If you drink something with bubbles do you notice them?
Do you feel you breathe in through the nose and out through the mouth? Do you get a blocked nose or is that never an issue. Do you know if you are a snorer that rattles windows or do you sleep quietly? When you get a cold is it more likely a head cold or a chest cold.That might sound like an odd bunch of questions but what I want to understand is what happens as I can't see you for myself.
Regards

No problem, I get where you're coming from

Tongue is pretty much always coated, slightly white, no matter how healthy I try to be. Never was too sure if this was an EBV thing or a Candida thing. Bit redder round the edges but pretty healthy pink centrally, not currently bumpy but there are times when the bumps do appear, are noticeable to me and it looks oddly 'cracked' and rough.
I do get mouth ulcers once in a while. I also get coldsores, a very weird dry patch right on my cupids bow that's fairly new and been quite troublesome recently. And little teeny tiny blistery spots sometimes appear on the lower half of my cheeks. I think they go hand in hand with simplex attacks.
No skin peeling inside my mouth of it's own accord that i'm aware of but I do chew it a lot. And my lips.
Taste is slightly metallic.
I don't normally drink fizzy drinks but yes I definitely notice the bubbles and feel like there's ucky crap coating my tongue when I do.
No, I think for the most part I breathe through my nose (if I can) or through my mouth exclusively. Pretty much because I get a blocked nose and full sinuses a lot.
I'm pretty sure I don't snore, the fella tells me that he's very grateful i'm a quiet sleeper, which surprises me really since... I do breathe through my mouth most nights.
I think I have a sort of nasal/sinus drip thing going on most of the time.
Definitely more head cold than chest cold.

Ta da!

Again a good description.

We need to start eliminating the obvious. I think you need to see an ENT (ear, nose, throat) specialist. Don't accept a GP. I'd say you definitely have an infection but we don't know the condition of your tonsils. An ENT will have specialist knowledge. If your tonsils are just two bags of pus then they wont be helping you. If you have a strep or similar untreated infection residing there then that wont help either. If he says take them out then do it. I wont pretend its fun but it might be a very necessary start.

Regards

The tonsils are not really pus-ish, they swell up and go down and gather tonsilliths when they do but no actual pus. I do, however think they hide tonsillitis that I can't see/get at, which are irritants.

I saw an ENT a month or two ago (have seen them a few times before), had a camera shoved up my nose and... nada. All fine. He even said don't bother taking the tonsils out, you're better off with them as they're a protective tissue. I had just come to the decision to get rid of them.
However, after the camera going up my schnoz, I did breathe an awful lot better that evening! haha

I've had throat swabs done a few times to check for infection and they always come back fine.

I have always tended to view the tonsil/gland issue as more in the light of people with CFS because they always seem to have the same persistent issue with no obvious cause.

Don't forget you're 34 so your tonsils are no longer sitting proud. They will be imbedded and largely invisible except if they are dug out. Too many of your issues look like they center back on this area- right back to your first problem. I'm suspicious that they will be a constant problem. Having them out if necessary will be agony and it needs a skilled surgeon. I had it done when I was 40 and it was a really painful experience. The degree of difficulty from a technical point of view is up there with open heart surgery because the arteries in the neck are feeding the brain. I can see why a surgeon might be reluctant. It is not easy.
If you are going to keep them then some how we need to encourage a detailed examination of what lives round the area. If you've had EBV then it will certainly persist in the B cells in the area.
Can you get a test for group A and group M type streptococci?
I still think we need to exhaust the tonsil option.

Regards