Beyond Avonex and Valtrex

[Interrupted]

Interesting!

I did think about laser resurfacing them, to get rid of the pits for the calcium to get caught in, could be an option other than having them out totally, having as much as possible of them lasered away...?

I will ask my GP and Neuro next time I see them about testing for those

[Scott1]

This is a bit left field. See if you can be tested for "specific determination of autoantibodies involved in the mechanism of PNP. Specifically, antibodies against envoplakin and periplakin ".
I doubt this is your problem. PNP is very broad area involving a range of tumours from bad ones to benign. Even an abscess can start a problem. It also is associated with lymphoma (as is EBV). -
This note makes it clear that its rare so you need to find a specialist who knows what they're talking about. - http://en.wikipedia.org/wiki/Paraneoplastic_syndrome
Again, we are trying to eliminate possibilities no matter how remote.

I really think you need to look very carefully at your tonsils before an issue arises. If you have an infection (which I think you do) then we need to find it.

Regards

[NHE]

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

When I had an upper respiratory infection (sinus infection) last Spring, I used a NeilMed Sinus Rinse every day for about 4 or 5 days. It really helped to clean things out and shorten the duration of the infection.

http://www.neilmed.com/usa/sinusrinse_isotonic.php

[Scott1]

Hi Interrupted,
I think I didn't give you enough time after your great responses so I'll try now. Although I am on sick leave I am exercising, going to work and using public transport so I am busier than a one legged man at bum kicking competition. Here goes anyway.
The tonsillitis leading to continued unwellness is a very clearly defined point. It points to an infection. The lethargy sounds like another word for fatigue.
My view of the world is real fatigue comes from a malfunction of the sodium potassium pump when glyceralderhyde-3-phosphate is disabled. The way I look at this is that it is a sign of an excess of peroxynitrite. We need two things to make peroxynitrite; an abundance of superoxide and a lot of relatively stable nitric oxide. Another way of checking if this is a problem is a uric acid test. Uric acid scavenges peroxynitrite but if the radical is too great then the uric acid will be depleted.
Another test would be a fasting amino acid test to check your levels of the non essential amino acids (the ones you make yourself) In particular we would look at your arginine level. If its depleted well below the normal range then we add L-arginine.
My guess is uric acid and arginine will both be low.
You would need to do three things about this.
1) Use valacyclovir if you test positive to EBV as that is the probable source of the superoxide. Don't be afraid to start on a really low dose (ie half a tablet) if you have a problem because it may be causing something we don't know about to be affected. You may have multiple infections.
2) If arginine is low take a teaspoon of L-arginine to offset your shortage. To me low arginine increases the chance you are making too much ADMA so we need to compensate for that.
3) introduce a higher dose of coenzyme Q10. I'd start at 150mg just before bed and every second night increase the dose by that amount. Hopefully we find a dose where you wake up in the middle of the night feeling more alert than normal. That's the dose you stay at. For me, it was 600-750mg. Be careful that its a good brand not just a popular brand. Some of the stuff on shelves might as well be lollies.

Your sensation is a different story. The left side weakness and numbness in the hands sound like demyelination. The left side implies the right side of the brain. If it is the whole left side, it suggests the lesion is on the pons which sits at the base of the brain. Your hands suggest a lesion up in the C vertebrae. If both hands are equal then its probably on the vertebrae near the centre of the relevant area. This suggests inflammation so the suggestion of Tecfidera is rational. That is what I have added after my last attack.
Your glands(I presume neck) sound like an infection and I presume EBV is highly relevant here. I am really suspicious about your tonsils. At your age they wont know what they look like till you dig them out. They are a part of the immune system but if they are rotten they wont be helping. At this stage of life they are awfull to remove.
The waking up with difficulty breathing implies an obstruction. This suggests engorged tissues blocking your breathing. Either you are potentially obese and when you lie down it creates a blockage or the tissue around the tonsils is inflamed and swollen affecting all the lymphatic tissue in the area. If you cant sleep peacefully it wont help.
The legs mean one thing- some form of exercise is required. I swear by Pilates. Small classes, no big groups, some machines not just mats and do twice as much as they tell you to do. Stiff legs are compensating for other problems. You must get them going properly. Pilates is about movement not aerobic capacity.
I'll try to come back with some more comments.

Regards

[Scott1]

Hi Again,
I hope I corrected all the poorly constructed sentences in that last note. Some of it was gibberish without being proof read. Sorry about that!
We still haven't solved the infection issue. If you read back through the notes on my last attack, I felt the problem of demyelination related to Th1 being upregulated by a catalyst and that recruited the innate and adaptive immune systems in an endless spiral. Sort of like you would see when an ingrown toenail gets angrier as the swelling from the immune response adds to the pressure. My suspicion is the cell walls of bacteria (peptidoglycans and psuedomureins) are the activator. This is separate from EBV and various metabolic problems. An antibiotic aimed at gram positive bacteria needs reasonably long term use to eliminate this style of infection. I suspect the issues with a leaky gut may come and go but it would create a pathway for such an infection to gain inappropriate entry to the system. Get tested for anything suspicious or just use an antibiotic like Zinnat as a precaution. Also check for mycoplasmas, chlamydia's and anything your doctor can think of. He needs to be imaginative.

Regards

[Interrupted]

Thank you for the suggestion NHE, i'll see what I can find!

Hi Scott,

Sorry, i've been AWOL for a few days because I have just started my fourth year of home study university and the first assignment is imminent. The computer staring and reading is wrecking my eyes and brain a bit.
Please don't ever feel under pressure to reply ASAP, and please don't put yourself out. I'm just very grateful you're helping me at all!
I'll try to respond to these with some sense of logical coherence...

RESULTS: I just heard back from the neuro's nurse. No signs of CMV, evidence of previous EBV but no signs of current activity.

WEIGHT: No, i'm definitely not obese, generally have a perfect BMI, occasionally dipping on the skinnier side when the stomach is being a persistent nightmare.

ABX: Would Doxycycline do the job? I have a vast supply of that still in date. I also have a vast quantity of Azithromyacin that's only just out of date(!) It will be difficult for me to get hold of anything new (but I can only try).

CoQ10: Do you think standard CoQ10 is quality enough? It is cheaper so that's good, but I was led to believe that Uniquinol was a much better form? Unfortunately that carries a hefty price tag. As you can imagine, being unable to work means money is a problem so I tend to prioritise supplements.

TESTS: Some of the tests you mentioned previously I think I can only really ask the neuro' for, I see him on the 18th November and will do. The Uric Acid and fasting amino acid/arginine I can perhaps try my GP for. They hate spending money on these things, so we'll see but I will try. Oh, for private care!

VALTREX: As the last test seemingly shows no current activity, do you think I should start on the Valtrex now anyway? And am I ok to do this before starting Tecfidera or Avonex? I was going to kick off the Pregnenenolone just before starting.
On the note of breathing problems, I did find it very interesting that this kicked up right away upon taking Valtrex last time, and very strongly. It feels like it's related to my heart somehow, but I cannot logically explain how or why I say that. (tachycardia episodes aside)

TECFIDERA/AVONEX: If you feel Tecfidera is the better option of the two, I can make a call and get going with that. How are you tolerating it so far?

CPn/Mycos: CPn came back negative the last time I was tested. But the CPn board wizards say that it's pretty undetectable anyway so false negatives frequently occur as with a lot of these things. It is incredibly difficult to get tested for anything like that over here, they just won't do it, so it's a case of going private or nada. I would be very interested to be checked for Mycoplasmas, I think, again, this is another one to broach with my neuro' on the 18th. I think I need to arm myself with this knowledge you're imparting to make as good a case as I can for that meeting. He is, at least, open minded.

Thank you, once again

[Interrupted]

Oops, one more thing...

EXERCISE: I LOVE pilates, seriously love it, love the feeling of strengthening core muscles, unfortunately it doesn't love me. The same with yoga or pretty much anything. This is how it goes with me with any type of exercise; start out slowly ---> enjoy it for one week, maybe 10 days ---> leg/back relapse. Seriously, EVERY time. It's incredibly frustrating. Prior to getting this I was an athletic kinda gal, I was a horse riding eventer and always played lots of sports.
When I moved here six months ago I discovered that there were pilates classes at the bottom of our hill, thought great I like pilates, will go and try and do the easy level one bits. As usual I lasted one week before relapse.
I've discovered that pretty much the only exercise that I can do without this happening is walking, so when I can I walk my dog for maybe 20 mins a day.Some weeks I can't some weeks I can.

I have a theory; that it's the engaging of core muscles and putting pressure on them, that hits some bad spot in my spine somewhere and inevitably causes the (mainly leg/base of spine related) relapsing.

[Scott1]

Good luck with the uni work. Sometimes it would be nice to stop the world and just get off! I hope it is a passion not a chore.
A previous EBV infection is enough. The nurse will be reading a report that says IgG positive, IgM not detected. For people who have a normal system that’s fine. IgG positive still means that EBV has immortalised some of your B cells and it is there chugging away making superoxide. IgM negative means you don’t have glandular fever at the moment. It is the superoxide we are interested in.

I’m glad your BMI is good. When your stomach is “a persistent nightmare” what happens? All of us seem to have some issues. On reflection, this latest problem for me started with lots of stomach muscle tightness and a feeling of being not quite right.
I did, some time ago, have a persistent problem of really urgent and sloppy bowel movements. Anonymoose posted a note about Lactoferrin which I followed up on (posted here- http://www.thisisms.com/forum/general-d ... 24261.html ) . I found taking Lactoferrin was not fun but the problems with it were very transitory. I would read the note so you know what it can be like but it really seemed to bring an end to my overactive bowel problems. I can’t honestly say I know why but it was very effective. Maybe the downside was just my reaction but for me a happy bowel is a happy man.

The Doxycycline should be ok (read this anyway- http://www.drugs.com/doxycycline.html ) Maybe your doctor can provide advice on the best one. Mine prescribed Zinnat. This is a good list of what to watch for with Doxycycline so you might want a doctors advice- Diarrhea, esophageal ulcerations, intracranial pressure and every womans favourite problem, vaginal candidiasis are things you don’t need to add to your list. ( see- http://www.drugs.com/pro/doxycycline.html) No matter how you approach it I think probiotics are a good idea to add to your regime.

On Q10 this is a good Q and A from one manufacturer. See- (http://au.iherb.com/info/kaneka) My preference is to find a brand that targets its marketing just to health practioners as, by implication, there is more care in the manufacture. I have been disappointed by cheap brands. They are hit and miss. I really hate the price tag on some of this stuff. Maybe try a good brand and see if it makes a difference. MS is such an expensive hobby!

I agree the cost of tests is painful. If you have a positive IgG for EBV I will guarantee your uric acid is low so you can save the money there. The amino acid test might not be cheap.
On your reaction to Valtrex let’s assume you have multilayered problems. Keep taking the carrot juice, dial up the Q10 and see how you go with a few weeks head start on the antibiotic. Then try the teaspoon of L-arginine if you think you are going ok. If all is well, then let’s start the Valtrex at a really little dose (half a tablet a day) and gradually increase it. We are not doctors so we don’t need to kill ourselves (says me!!).

I am tolerating Tecfidera very well. The product is dimethyl fumurate. Fumurate links the urea cycle and the citric acid cycle. When it breaks down you get arginine anyway so I am still undecided if I need to add it back. I think taking Q10 is important as the fumurate recruits it to become more active. Again, this product can cause some side effects so try to ensure you aren't starting everything at once. You need to know what to blame if you feel unwell.

My CPn was IgG positive, IgA positive and IgM negative. If anything said 'positive' act like you have it. I agree all these guys are hard to find.
Stay in touch. I hope all goes well.

Regards

[Scott1]

Hi Interrupted (again)

On your theory about the core muscles being the troublesome parts-what actually happens to you? I think I might know but don't want to preempt. What would be a typical exercise regime? How does it change over time?

Regards

Regards

[Scott1]

Hi Interrupted,

I've had a little epiphany. A short time ago just before my attack I was tested for lyme disease. I did not get a result for Borrelias but I did for Bartonella. My doctor lent me a book called healing lyme coinfections by Stephen Harrod Buhner. (see -http://buhnerhealinglyme.com/) My original reaction was to look at the cover and think it would be mumbo jumbo rubbish. I have just read the book which is very clear and very well researched.
I think we can be confused by a shirt, tie and letters after the name. This man is very good. The work is 364 pages and reference go on to page 485. He has done his work. The largest part of the book is devoted to mycoplasmas and the last third looks at bartonellas.
Your symptoms are classic bartonella. The herxing on Valtrex is probably a reaction from bartonella or it could be the mycoplasma. It is probably the same for others who struggle on Valacyclovir. There are even pages on google that say Valtrex causes bartonella which is clearly wrong..
Buhners approach is antibiotics are probably required but are a fourth line of defence. A range of herbs are better and he supports this with good research references.
In particular bartonella is very adaptive. It moves from insects to mammals rapidly despite the hosts being radically different. It hides particularly well from the immune system yet it rewrites the way the host operates at the same time. It re-engineers itself according to the cells it resides in.
I can see strange things from my childhood such as a racing heart and excruciating shin pain make sense now in the context of this research.
I think everything I described earlier is right in the context of EBV but for us there is more going on. EBV, mycoplasmas and bartonella can all rewrite the mechanism of our system. They can feast off each others work creating a coexistence that disables but lets them thrive.
I think you need to be tested for bartonella. It will need to be a PCR test but it needs to be a very good one as the bacteria is intracellular and hides very cleverly. You may have to find a lyme society that can advise you on who is any good at detecting and treating the infection. Most doctors will be useless bureaucrats saying "computer says no".
L-arginine is recommended but as part of a much larger protocol.
I'd hold off on the valacyclovir until you have had a proper investigation of bartonella.

Regards

[NHE]

An interesting discussion about Bartonella...

http://www.thisisms.com/forum/post211282.html#p211282

[Interrupted]

Hi Scott,

Sorry again for the slow reply - I am reading and digesting everything, just stuck for time before Thursday assignment deadline!
So i'll just quickly say the things at the foremost of my brain at the moment...

BARTONELLA: I had a quick google, yes it does sound very 'me'. The same as Mycoplasmas, most of the herpetic virus family and most Coxsackies. I might email my microbiologist and see if he could do a test for that and any of the other ones that you think are most important (ie. Mycoplasmas). His company does most of the less common viral and microbial testing, I believe.
- On a side note, all this makes me think of when I used to see a BFD (homeopathy) specialist years ago. Now regardless of whether one puts any faith in homeopathy, let's assume not, it was the only thing that ever used to help me. They targeted viruses and bacteria. It's interesting because he said he'd never met anyone who had such deep rooted and such a numerous viral load as I had. I was trying to remember the recurring ones that he said, the ones I remember were almost all the Coxsackies, EBV, one strain of bucellosis that recurred many times, several mycoplasma, scarletina and cryptosporidium. There were a lot more but mentioning these things just rings bells.

VALTREX: No problem, I will hold off. I was going to leave it until I got settled on something protective. I can't remember if I asked, were you still on the Valtrex/Avonex combo when you relapsed this time or were you still off of it? Which leads on to...

TECFIDERA: Now I phoned today to agree to go on it. She mentioned the case of PML this week and I recoiled until they know the full story with that, also partly because i've been reading about how people seem to keep getting bugs and colds while on it. Now I get this anyway, and am, I would hasten to guess an awful lot weaker (in constitution and energy) that a lot of MS'ers, so i'm certainly very scared of my immune system dropping any lower...

EXERCISE PT II: What happens? I'll start to feel fluey and i'll de-power. My lower back will start to go achy numb and l'hermittes becomes violent. Then my legs will rapidly follow suit and all hell breaks loose in whatever way it chooses at the time. A typical attempt at an exercise regime for me is trying to do level one pilates for 5 mins a day or cycling on my exercise bike, even trying to walk my dog for 10 mins a day every day will do the same. The effect will continue for 2-3 weeks after, usually. It's truly frustrating and infuriating. No type of grading up stops it from happening. Possibly because the crash will happen regardless, but the legs/back give it away as exercise related.

[Scott1]

Hi again,

Having just spent 3 weeks in a neuro rehab I saw first hand how sick some people get when they exercise. That depowering is how I think of fatigue. Your battery is flat and doesn't recharge when you pull on it. No ATP to recharge by the sound of it. EBV, Bartonella and other problems can cause this. Some of the EBV reasoning is explained earlier in this post. Also,Mycoplasmas make ATP behave like a cytokine triggering a cascade (book page 76) which we don't want.

A Bartonella is a Gram negative bacteria. The interior is the cytoplasm, then there is a cell wall is called a peptidoglycan, then comes a compartment called a periplasmic space then an outer membrane. The gram positive bacteria have single thicker cell walls. This is why antibiotics often don't work as the periplasmic space and a cell wall protect the cytoplasm. Gram negative bacteria have the double wall and a group of enzymes called beta lactamases that deactivate a number of antibiotics. Both types of bacteria have efflux pumps that act like sumps to pump out the antibiotic substance. Hence,the antibiotics might stop the bacteria replicating but they don't kill them. That's why Buhner uses a variety of herbs because the bacteria can't cope with them as readily. Sort of makes sense when you read the whole book. A justification for those who want to use a "natural" approach. The defense mechanism may also explain why you feel so rotten on Valtrex (a guess by me). Perhaps there is a bug you need to deal with first.
Killing mycoplasmas and Bartonellas is going to push you into non conventional medication. Given they "don't know" what causes MS yet prescribe expensive drugs which they say they "don't know" how they work you have to wonder which approach is the voodoo method.
I don't really want to use Tecfidera. It upregulates BCL2 and that makes me very unhappy with it but it shifts the Th1 response to Th2. I do want to find a better way but the neuro is a very vanilla man and I am not comfortable that I can kill him yet. (Neuros are like goldfish-once around the bowl and they've never been there before)
On exercise maybe just try gentle stretches till we find the bug that's pulling on the ATP.

Regards

[Interrupted]

Can only concur with both sentiments on ATP and neuros. The reason I was using the Myhill method was her views on mitochondrial failure and ATP. Harking back to CFS again but so very pertinent.

Having trouble with glands swelling/muscles tightening and locking up at the back of my neck so i'm off to harass another unknown GP this evening. There's a lot of cold/flu viruses floating around at the moment that are creating big problems for me because, I think, my system is not dealing with the one(s) i've had properly. They're hanging around and riling MS problems. Stacking one thing on another.
So since it's actually pointless asking the GP for any help regarding that - which of the mentioned tests do you feel are the most important that I can broach the GP (not neuro or specialist) about, and will be most useful? Anything generic enough that they might bite?

[Scott1]

It is tricky isn't it. The medical game is full of academically bright people but they collapse when it comes to lateral thinking. Ask them to write something on economics or interpretive English and they are muppets. Everyone can have a blind spot I guess.
Let's say there's a bug; we should be checking for EBV, Cpn, Bartonella (or lyme) and mycoplasmas. They have the worst reputations. Demylination is handy to know about but it,s a symptom not a root cause. What it does tell you is Th1 is probably too active. Buhner uses Cordyceps to move from Th1 (pages 127-140 of his book). I am seriously thinking about using this instead of Tecfidera.
Your tendency to be fluey with exercise as well as currently says check for Cpn and perhaps the mycoplasma form. When I had Cpn I used a long course of Rulide (from memory).
I'm still not happy with your tonsils.
You could just check your uric acid against the normal range to look for excess peroxynitrite. If you are low that would implicate EBV and iNOS as things to address. I keep forgetting to answer your question about what I was taking. I had stopped Avonex for over a year and had dropped back the Valtrex after I got gout. As I was gout free I probably had let my uric acid level fall too far. I wont say that's why I had the attack but I bet it didn't help. (pride cometh before a fall as they say).
So I guess see if you can get the bugs tested, check if the demylination has worsened and check if a clear metabolic signal shows up with the uric acid. You could do Vit D but if will probably be low anyway or check the usual suspects that have been mentioned elsewhere covering other vitamins and minerals. I'm not sure supplementing to correct numbers will correct a cause as opposed to a symptom but it might be better than being too far off the number.
If money was no object or the tests are cheap then a full blood examination, a microbiological examination of faeces, a serum thyroid function test, an oral glucose test, a Flow cytometry Coulter stain EPICS-XL colour stain for lymphocytes and CD4/8 ratios etc, anti gliadin antibodies test, a nasal swab coag neg.stap to check sensitivity to Penicllin, Tetracycline, Erythomycin and flucloxacillin and a serum protein investigation(electrophoresis) should show him a reasonable picture of what is normal and what is not. Depends if he is any good after that.

Regards