Just wanted to update. I am far from a success story yet but I have randomly had 10 days of vast improvement despite everything being against me, very odd. I have been at 70-75% for the past 10 days.
Christmas day was horrible, was so tired (does anyone else get very stingy eyes and severe fatigue???) and dizzy when walking, felt so fed up. I also had constant pins and needles in my feet all day. On Boxing day I had just had enough, so I got stuck into the wine and had a brilliant night, got quite tipsy with my family, dancing, singing etc and went to bed at about 1am. Was dreading the next day but I was SO much better, was so so odd. I didn’t take my nori on the night of 26th as I forgot. This improvement has continued.
I am much steadier on my feet. I still have slightly shifting/jumping vision and things are a bit warped in my field of vision but my unsteadiness on my feet has all but gone and this was the symptom that bothered me the most. I have been drinking, eating anything I like (choc, cheese, dairy…). I went to Ireland for NYE and was out until 4am again drinking and was none the worse for it. The only thing I can attribute these changes to is either the fact that I dropped the nori from 37mg to 25mg from 26th Dec or that I have simply seen a bit of the old me and relaxed and allowed myself some fun…there is one other factor, I was put on doxycyline on 24th Dec for something unrelated and the imrpovement seems to have coincided with taking antibiotics, very odd. Any thoughts anyone? I may well crash again but for now I’m enjoying having a bit more of a life!! (walk, pub lunch and visiting friends today). xx
Wow…that’s great you have been feeling better! I think drinking can sometimes really take the edge off and help. Maybe your dose of nori was too high? I am on ami and had great success with 25 to 35 mg. my latest relapse had me increasing to 50 mg and still after over 1 month I am not feeling much better. I am contemplating dropping my dose. This past week I was starting to think I was getting better, but today my symptoms are really bothering me. I guess you actually don’t have many dietary triggers? I trialled the diet way back when but couldn’t identify any real triggers. I have been eating pretty much what I want…(makes no difference). I would keep up what you are doing and hopefully you will continue to see improvements!
So pleased you’re feeling so much better. However, I wouldn’t say it’s random- I reckon the drugs have finally started to kick in, and you relaxing enabled them to do so…
Also, I DEFINATELY think there’s something in the antibiotics thing- I was on antibiotics for cystitis twice, and both times I had a MAJOR improvement- why would that be? Wonder what Dr S would say to that…What could the answer be?
Thanks everyone, I think you are all right, I think for me the problem with all the dietary changes, the sedating drugs, the strict bedtimes etc is that they made me very introspective about being ill and that doesn’t help in my case, I was getting almost obssessed with the fact that I wasn’t like I used to be…once I stopped sitting at home denying myself everything I seemed to get better. MM - I cannot believe you got better on antibiotics too, how weird is that!!! Defo going to tell Dr. S about it and I’ll let you know what he says. On another note I had an e-mail from one of my friends today who went completely numb down one side of her body a year ago and has recently been having horrible dizzy spells and fainted a few times at work, she’s just been told it’s migraine by a neurologist!! Happy New Year all. Are we on for 6th Feb Londoners??? Where would be good to meet? xxxx
i would put my money on the antibiotics. let us know what dr. s says about this. perhaps doxycycline could be a new MAV treatment??? People take that for months (maybe even years??) for acne- I think I tried this in college. So I wonder if maybe you can try and stay on it longer and see what happens???
I just find it really strange that it helped so much, far more dramatically than any of the neuro-type drugs. very strange, it can’t be a chronic bacterial infection causing these symptoms…I’m stumped. xx
Lizzie doxycycline is used as a treatment for lyme disease… theoretically if you had it maybe that is why you are feeling better. it could be some other type of infection maybe? How long are you supposed to be on the antibiotics for? Def. ask Dr. S. and also the dr. who is prescribing this and let us know what they say- I would ask about Lyme also.
Wow thanks so much Sarah. I was only on it for 5 days for sinusiti. Mmmm I have wondered in the past about Lyme but fdoctors have always dismissed the idea…perhaps time to consider it again? have you ever been tested for it MM? xxxx
the trouble with lyme is that the tests are not always accurate and drs. have all different opinions about it. the key is finding a good infectious disease specialist who knows a lot about lyme. i have had chronic pain for years which is the main reason i was sent to one. basically good lyme drs. will try to treat you for lyme if you have suspicious symptoms, EVEN if your tests are negative. so they will put you on antibiotics (doxy is the first choice usually) and see if you respond to them or not. it is actually kind of like MAV where there is no perfect test, so you just treat the symptoms and see what happens.
Nope never been tested for it… but are we seriously considering ANOTHER diagnosis that isn’t MAV? I’m fearful of doing that… Although I’m also interested in why I felt better on antibiotics. MAYBE antibiotics work on the vestibular system in someway? I think we need to speak to Dr S about it. And see how many others respond to this post too to know if there’s only a small handful of us who have noticed an improvement on antib’s or whether it’s an insignificant amount of us.
What are the MAIN symptoms of Lyme and how long can you have it for? Does it lie dormant for a while then flare up?
How long do you stay on the antibiotics for? And once you stop taking them, does it come back?
Lizzie- Not that you didnt have it but,sinusitus is often migraine. xx
I know what you mean, I think that’s why I’ve been anxious about even considering it. I just can’t handle the idea of going down another route in some ways…I agree we should see if anyone else has noticed the changes on antibiotics. I’m hoping to make an appt to see Dr. S in Jan so I’ll ask him about it. xxxx
I used to post on another forum for labyrinthitis where someone had been diagnosed with Lyme and he was always urging everyone to get tested for it. Trouble is the whole testing process sounded really complex and very expensive, ie about £1000!! Apparently the basic tests for it aren’t accurate and there are loads of different types of Lyme bacteria so you have to send off blood samples to various places. I really did want to have it done but could not afford it or figure out how to do it all correctly. Someone else on that forum did follow the advice and get tested but it was negative for Lyme so I think she was a little peeved at wasting all that money for nothing. It would certainly be worth running it by Dr S though…
No I’ve not asked Dr. S about it but when I lived in Australia in 2007 I had a horrendous flare up of neuro symptoms, no dizziness but electric type buzing in my feet, loads of odd visual disturbances, extreme fatigue, tingling hands etc and I seriously freaked out that I has MS. I saw a neuro out there who ran a basic test for Lyme and it was negative. That sort of put it to bed for me…but since then I’ve heard alot about multiple misdiagnoses due to basic NHS tests. I know Lyme is considered a ‘great imitator’ and can have many neuro symptoms…I just don’t know. I might run it all past Dr. S at my Jan appt and I’ll report back. xx
