Hello
Posted: Tue Aug 13, 2013 12:34 am
Hi there,
I've been reading thisisms.com for a long time. So finally, time to tell sth about me. In short, I am in the middle of lyme-or-ms controversy. I have positive titers for Lyme and ms symptoms (problems with balance, difficulty standing upright, mainly). My Lyme symptoms started in september 96 (fatigue, photosensitivity, fever 37.2 deg C, minor neurological symptoms) and I vaguely recall a tick bite during summer holidays. It could be Lyme only, but...
In april 95 I had an attack of nystagmus with vomiting and all the funny things. It started suddenly and lasted for 2-3 hours. I didn't have any fever, nothing. Just a lot of stress in school. The next day I was fine. I didn't get any mri or diagnosis. I had similar attacks (3-4) later on.
My lyme symptoms developed during later years, I was more fatigued, had more neurological problems with depression, concentration, brain fog. Had MRIs, nothing on them. So no help from neuro. In 2008 I felt so horrible I knew I have to do something. I found info about Lyme, had my Lyme tests (ELISA and blot), started abx.
I had horrible reactions in the beggining of abx treatment, I thought I was going crazy or dying, I couldn't sleep for days. After a month or two of hell I suddenly felt so much better. I was on abx ca 2 years, but every time I stopped, I relapsed badly. I knew I have to find something else, I don't imagine my life on abx forever.
Fortunately I discovered Terry Wahls at that time. Gave up dairy and gluten (dairy was the main culprit) and was so much better immediately. I experiment with food since then. Flax seed and oil make me feel so good. I also take 1/2 teaspoon or even less of nanoparticle/colloidal silver daily. I watch my sat fat intake, although I am not trying to limit it closely at 15g/day, just avoid.
I experimented with LDN, but discovered that doses like 3mg/day make me feel worse, I am very weak and have more difficulty standing upright and controlling my muscles. I found that the smallest dose that makes a difference for me is 0.3mg/day (yes! no error here) and I take it, because it makes me feel better without side effects.
Generally, I am quite good. I find exercise very important. No depression, some fatigue, I have a full time job. I would say my edss would be ca 2, maybe 1 on a good day. I am constantly looking to make myself better and consider food being the main longterm target. I am also investigating other possibilities (for example Marshall Protocol).
Since I didn't have any help from neuros during years of my illness, I am staying away from them. None of them even came up with the idea of ordering a Lyme test. As long as I feel good with my strategies I don't want their "help". I don't really know if anyone could tell if I have just late Lyme or just MS, or late Lyme AND MS, or had Lyme while my MS was dormant. Or had RRMS, got Lyme and switched to SPMS. No idea....
So, this is it I guess. Can add some details if you want me to
Pawel
I've been reading thisisms.com for a long time. So finally, time to tell sth about me. In short, I am in the middle of lyme-or-ms controversy. I have positive titers for Lyme and ms symptoms (problems with balance, difficulty standing upright, mainly). My Lyme symptoms started in september 96 (fatigue, photosensitivity, fever 37.2 deg C, minor neurological symptoms) and I vaguely recall a tick bite during summer holidays. It could be Lyme only, but...
In april 95 I had an attack of nystagmus with vomiting and all the funny things. It started suddenly and lasted for 2-3 hours. I didn't have any fever, nothing. Just a lot of stress in school. The next day I was fine. I didn't get any mri or diagnosis. I had similar attacks (3-4) later on.
My lyme symptoms developed during later years, I was more fatigued, had more neurological problems with depression, concentration, brain fog. Had MRIs, nothing on them. So no help from neuro. In 2008 I felt so horrible I knew I have to do something. I found info about Lyme, had my Lyme tests (ELISA and blot), started abx.
I had horrible reactions in the beggining of abx treatment, I thought I was going crazy or dying, I couldn't sleep for days. After a month or two of hell I suddenly felt so much better. I was on abx ca 2 years, but every time I stopped, I relapsed badly. I knew I have to find something else, I don't imagine my life on abx forever.
Fortunately I discovered Terry Wahls at that time. Gave up dairy and gluten (dairy was the main culprit) and was so much better immediately. I experiment with food since then. Flax seed and oil make me feel so good. I also take 1/2 teaspoon or even less of nanoparticle/colloidal silver daily. I watch my sat fat intake, although I am not trying to limit it closely at 15g/day, just avoid.
I experimented with LDN, but discovered that doses like 3mg/day make me feel worse, I am very weak and have more difficulty standing upright and controlling my muscles. I found that the smallest dose that makes a difference for me is 0.3mg/day (yes! no error here) and I take it, because it makes me feel better without side effects.
Generally, I am quite good. I find exercise very important. No depression, some fatigue, I have a full time job. I would say my edss would be ca 2, maybe 1 on a good day. I am constantly looking to make myself better and consider food being the main longterm target. I am also investigating other possibilities (for example Marshall Protocol).
Since I didn't have any help from neuros during years of my illness, I am staying away from them. None of them even came up with the idea of ordering a Lyme test. As long as I feel good with my strategies I don't want their "help". I don't really know if anyone could tell if I have just late Lyme or just MS, or late Lyme AND MS, or had Lyme while my MS was dormant. Or had RRMS, got Lyme and switched to SPMS. No idea....
So, this is it I guess. Can add some details if you want me to
Pawel