Frozen into inaction

Submitted by sugarglider on Wed, 2012-02-08 17:56

This is a very confusing and bewildering treatment. I am having all sorts of problems and have now stopped taking mino. I'm very close to packing it in. I have been off mino for a week now and my headache and heartbeat noise/sense in the back of my head has diminished, but not gone completely. I was scared that I was developing pseudotumor cerebri. I don't really know where to go from here. I am finding it is so hard to know what drug is doing what and whether the myriad reactions are MS exacerbations, side-effects of the drugs, a return of nerve function, or caused by some other problem altogether.

I have a family history of migraine and stroke which makes anything weird going on in my head even scarier.

I suspect I am also perimenopausal which can cause migraines and formication (that's an M not an N, lol), the weird creepy feeling that I am having all over me but especially on my face and scalp.

It is so hard to know what to put down to treatment and ignore and when to get medical advice. I hate going to the doctor, I feel like a vacuum cleaner salesman, I'm almost apologetic with doctors, then I come away feeling resentful that I feel this way. I am not the kind of person who goes to the doctor at every sneeze. But some things just can't be ignored.

I have only managed 1 tini pulse of 1 day, which put me into an emotional meltdown and landed me on trycyclic antidepressants which are awful. I have reduced the dosage of these but can't just stop taking them without risking a serious relapse of depression.

I am even finding the supplements so confusing, I can't take NAC and even Vit D seems to cause me all sorts of problems.

I feel different from one week to the next. My energy levels are so unpredictable that I can't plan anything and find myself constantly apologising for letting people down. I'm sure people think I am neurotic or malingering and this gets me down. I know I shouldn't care but I do. :(

Okay, it's not all in your head.  This stuff messes with your brain, your skin (largest body organ), your nervous system... you name it.  First, the bug messes with you.  Then, the inflammation and toxins resulting from killing the bug also mess with you.

That being said, you need to find a way to tough it through treatment.  Quitting will not fix you.

I'm going to suggest something that's really kind of time-consuming, but ultimately satisfying.  Go back to the beginning of this site and read the comments.  You will see we all had bizarre reactions, weird ups and downs, buzzing feet, thumping heartbeats in our ears, tours of emergency rooms throughout the USA, blurry vision, raging headaches, peeling skin, aching teeth, crying jags,  twitches, glitches and ranting / raving episodes.

I don't suggest this lightly, because there are people (like me) who are susceptible to believing they are experiencing every symptom described by others.  Indeed, the apprehension of a reaction to flagyl almost caused me to quit nearly before I got started.  But, by reading it all, you'll see you are not alone and your fear of this obscure side-effect is likely unfounded. 

Remember, if you let fear control you, you will have no options.  You'll just lock yourself into a box and your decline will become inevitable.  I'd rather have a difficult option than no option to recover at all.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I agree with Mac-dont quit. I to wanted to stop-still do but am too scared to because the reality is ,before TX, I was headed permanently into a wheel chair,couldnt swallow,had severe night cramping/rageing pain, and no bladder controll. Basically-I was headed for a nursing home. This tx sucks but the alternative is so much worse. I've seen end stage MS as Director of social services at a nsg home, not pretty,I had patients with MS that were their 20 years curled into wierd shaped fetal positions and everytime we tried to move them they screamed in pain. Try a different anti-depres., stop the NAC-I dont take it, it aggravates everything. I cant do any of the reconmended stuff to get rid of tge toxins either. Percoset and valium get me thru the day-barely and those r something I will have to deal with when I finally start down the other side of this mountain. We r all between a rock and a hard place and it sucks. Tinni makes me depressed as hell and yet once its out of my system, I feel better emotionally and usually  I notice some improvement even when it's only measurable in hindsight. I missed my Jan. dose due to surgery and am still not right and may have to skip Feb. too. Everyone says it: do what is bearable, this is a super sucky,painful,awful,unfair way to live but it will give you a chance at a real life eventually. Please try and hang in their. I'm starting my 9th month on this and all the problems mentioned above r gone or almost gone but the day to dat grind is awful. The spasticity,clonis,my hands not really working they r not better yet but I have faith this will change. You will only get worse and the tx will be that much harder on you. Do what you can-follow the program as close as you can while maintaining your sanity. We R all cheering and praying for you.....:) There is a light at the end of the tunnel, and finally, it isnt the train.

MS DX 1996. Started CAP 6/5/11. Doxy 200 QD,Azithro 250 MWF, Amox. 1000 2xQD, Tinni-1000 BIDx5days 1x Q month. All listed sups. on Cap except NAC. Copaxone QD. Asthma,reynauds, hhv6

Sugarglider – so sorry you’re struggling.  Lots of good advice already.  I don’t think the words exist to describe how difficult this treatment is – but we don’t have any choice but to find whatever way we can to get through it.  However hard this is, the alternative is worse.

Mackintosh is so right about this stuff doing something to our brains – I’m finding the only way through is to try not to think about, and constantly analyse, things in the way I would usually do – because I end up going around in circles and getting nowhere.  I think we have to learn that we’re never going to be able to understand all this weirdness or know exactly what is going on.  We just have to take the tablets – and trust and hope!

I’ve gained loads from reading everything on the site – several times!  It is reassuring to know that we’re not the only ones going through this – and I seem to find something new each time I read, which I hadn’t noticed or understood the time before. 

You must talk to your doctor – and get back onto those abx.  Perhaps he’ll feel it worth changing to doxy.  Don’t worry about NAC.  And, as for Vit D – I’m struggling like crazy with that one, and, after 10 months, can only manage 2000iu, as it makes me so ill.  And it’s not as though we’ve got any sunshine here!

You’re definitely not on your own in this.  I don’t know from one day to the next  how I’m going to be feeling or which bit of weirdness will be at the forefront.  But I’m sure it won’t always be like this if we stick at it.

Erica – same for me with the tini and depression.  The depression and anxiety and panic are completely overwhelming.  If I end a pulse on a Thursday, the depression seems to come from nowhere on the Saturday.  Absolutely fine one minute, and bursting in to tears the next!  But it does pass, so I have to keep telling myself it’s not me, it’s the drugs.  At least that helps a little bit!

I’m so glad we’ve all got each other to help us along this journey x

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11)

Thank you for listening to me vent! You guys are the only people who really understand this stuff. Even the doctors can't really understand unless they have been treated themselves. I guess that's why DW has such an insight into this treatment.

I got scared by the headaches, and the really persistent pounding in the base of my skull. It's still there even though I've stopped mino, perhaps not as bad though, and the headache has mostly gone. I was also getting flickering in my eyesight when I was lying down. I don't want to permanently damage my eyesight, it is already slightly damaged from a bout of optic neuritis. I have never recovered full colour vision in my left eye and my eyesight in that eye is blurry (particularly when I am tired).

I think my only option now is to try doxy instead of mino. I already feel like I have dropped the ball. I think I'm failing CAP101!

Anyone else experiencing the pounding head thing? As my CCSVI ultrasound showed reduced blood flow from the brain this particular symptom is worrying me. I feel like my head is going to explode. I can't just ignore this can I? I don't know what to do :(

I'll just keep plodding along. The doctor is sending me scripts for doxy. I'll give that a try. I feel like I've taken a wrong turn and am back at the beginning of the maze.

I think I would have packed it in if I didn't have you guys to compare notes with.


RRMS diagnosed 1996. Many years of weird symptoms before this. Started CAP around 6/11? Mino 200mg daily, Roxy 300mg daily, Tini pulses started 11/11 (very tentatively!) Major problems with headaches 01/12, substitued mino with doxy.&l

Sugarglider, do you possibly think that because you went to see Dr Thibault expecting ccsvi treatment but then found him wanting to put you on antibiotics first might have something to do with your troubles?  Do down you might be worried that you are losing valuable time?  I had a big vein above my right temple which now looks like it might have been caused by some kind of backflow, since I didn't have raised blood pressure or anything like that. It went back to normal size within a few months of abx treatment, though.

You are wise to want to change to doxycycline because it has far fewer side effects than minocycline, which I have never taken and David won’t prescribe.

I’m not a headachey person, but I have had a few migraine auras when taking antibiotics.   

I have also experienced lights flickering in my eyesight when I go to bed, especially when I open my eyes: a bit like a low level flashgun has gone off.  The only optic neuritis I have had was a slight dimming of the colours in my right eye.  This has now all gone, but at  the time I panicked and I was worried that I was going blind.  I had a similar panic attack when visiting the Science Museum in London and looking at a tool whcih showed if you were short or long sighted.  I thought that the spots were whooshing up so quickly that I must be severely short sighted and would be blind in a few years.  I went to have my eyes tested and found that I was slightly short sighted in my left eye, but not enough to even cut a lens for.  Eighteen years later I still don’t need glasses.

I think everyone can get blurry vision when tired, but I still now get what I presume to be dead bacterial fragments being expunged from my eyes on the outer surface of the cornea.  I wash them away with optrex and my sight is suddenly clearer.  Of course, perhaps it isn’t that at all!.................Sarah

A Journey through Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I came across this deep within the resources on the site a while ago -   - and I’ve found it really good at helping me rationalise all the weird stuff that happens.  As I always like to understand why things are the way they are, this page (which I've printed off to keep handy!) has reassured me loads – so I thought I would post it here, just in case it helps you, Sugarglider – or anyone else who’s struggling.

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11)

I bet things get easier with the doxy,also, I take with food. Stomache upset on top of everything else would be too much. It still absorbs completely-just takes longer. I also cut mine into fourths just to make sure no stomache upset-good luck!

P.S U can't fail CAP 101 unless you quit and your not a quitter plus you get an A for effort,strength and persistence :)

MS DX 1996. Started CAP 6/5/11. Doxy 200 QD,Azithro 250 MWF, Amox. 1000 2xQD, Tinni-1000 BIDx5days 1x Q month. All listed sups. on Cap except NAC. Copaxone QD. Asthma,reynauds, hhv6

Boadicea-The Tinni hits me immediately and I'm a mess emotionally. I do the same thing telling myself it';s the meds. but after a while I dont care-just want it to stop. I also figured out,based on all the pulses I've done so far-each pill is worth 4 days of utter misery, insteadof regular misery-LOL. My evenings are also much more painful then my days and am beginning to wonder if it's the vit.D as I take it in the evening. Can't wait till i can walk more then 20 feet without a cane or walker and get some energy. Sick of this marathon but beats the alternative :)

MS DX 1996. Started CAP 6/5/11. Doxy 200 QD,Azithro 250 MWF, Amox. 1000 2xQD, Tinni-1000 BIDx5days 1x Q month. All listed sups. on Cap except NAC. Copaxone QD. Asthma,reynauds, hhv6


When I first started Vit D my bones and joints hurt for a couple months

When I started NAC my gall bladder hurt or something in the lower abdomen

When I started Flagyl it knocked me flat with fluelike symptoms and I still get some sleepyness now on the first day of a pulse

So keep at it but montior your dose to keep it tolerable

Some things that may help are sauna vit c charcoal coffee retension enema yoga

I hope I never meet anyone here face to face because I'll be remembered as the coffee enema man




DAILY:  NAC 2400MG , DHEA sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections