Thank you for your answer! I will make an appointment with Dr you suggested and I will let you know Maybe you could ask at HSA for a blood test for CPN (IgA, IgM and IgG)
Here’s a Little bit about me: All my problems started approx. 3 years ago by pigeon ticks (or maybe it is a coincidence). Eye problems, skin rashes, tiredness, weakness... I’m living in a top floor apartment where there are lots of pigeons and seagulls. The ticks are coming from within the roof void into my home, but I didn’t spot it until this summer when I was bitten again and at the end of August I could not hold a cup of tea in my hands or write with a pencil due to the pain in my hands which were also waking me in middle of night. I went to the HSA and was prescribed 200mg doxycycline for 7 days and an iron supplement. I had a very strong reaction, all my symptoms got much worse and I had occasionally very sharp pains around my heart and chest. My knees started to hurt after 3 day of antibiotics and I couldn’t walk well. I couldn’t get out of bed for a few hours after taking the antibiotics. After 5 days I went to HSA again and I asked if this was normal and the Doctor told me to stop taking the antibiotics immediately.
As I’m not originally from Gib and as per my experience with doctors here I decided to travel to my country to get a diagnosis. I had done many blood tests for different things and was positive and diagnosed with CPN . I was told by doctor in my country that I will need approx. one year of antibiotic treatment to get rid off CPN and I will need check my blood every 3 months (to see my progress).
As I have lived in Gib for many years with my children who go to school here, I couldn’t stay away for a year in my country so I had to come back to Gib. I was hoping that with my diagnosis and blood test results I would be able to get my antibiotic treatment here in Gib. I showed my results to the Doctor at HSA who said he had never heard about combination antibiotics protocol in his life. He gave me antibiotics for 4 weeks (doxycycline 100mg) and sent me for lung x-ray and an appointment with a lung specialist. This lung specialist completely ignored my blood test results and the diagnosis from my country and only gave me antihistamine for the skin rashes I had on my neck. He said the x-rays were clear and that there was nothing wrong with my lungs and that he didn’t agree with 4 weeks antibiotics which the Doctor at HSA gave me. He said that here in Gib they only give antibiotics for long durations (4 weeks) for very serious illnesses.
Well now I’m on Doxycycline 100mg from a Doctor from Primary Care Centre and I'm also taking NAC and all the supplements as per Dr Wheldon protocol. I can feel a middle to strong reaction.
Thank you for your tip for the Doctor, I really appreciate it.
I will let you know how I’m doing and please excuse me for my bad English grammar.
So far on antibiotics I have had blurry vision some days, I have had a runny nose and been sneezing more and also had headaches at the beginning. I have not had any really dodgy side effects.
As for progress, my balance is a lot better, I can walk a little without the pram and around the hse without holding on to the walls. But best of all I have been able to hold on to my sons hands and walk a few paces with him to help him along. This Friday just past he started walking by himself
I will post again soon and give a full update with more details.
Quick couple of questions...are those of you that are on the antibiotics following any sort of MS diet? I'm trying to follow the Dr Jelenik diet. Also are you guys following an exercise regimen? I figure if I do all of these together it will improve my chances of staying mobile and be able to play with my son!
On another note, I am being sent to the UK on Mon to a neurological hospital as they wanna start me on a DMD. I def do not want to start on Tysabri, but am open to the other ones. Does anyone have any experiences with any of the DMD good or bad?
Anyway, diet. I intentionally never changed anything about my admittedly lousy diet when I went on the abx protocol. I wanted to know it was the protocol, not anything else, that either worked or didn't work for me. The protocol worked just fine. (I spent several hours this week shoveling my sidewalks and driveway more than once.) As for the dmd's, I refused to touch them.
What are dmd's? I am 59 with 3 grown daughters. I gradually declined to the point of needing a wheelchair, but since starting the protocol have felt well enough to practice with my walker. You can read my posts under "pulses" on this board.
Mackintosh thats really good to know that it was the abx that have worked for you and not any diet. I have decided to try to stick to a gluten free diet, because I have found out that I am intolerant to gluten and figure this can only help me. I have completed 1 day so far lol! Other than that I am trying to eat a bit healthier than what I used to
Roy DMD's are Disease Modifying Drugs. I have just been told by the neurologist that he wants me on Tysabri (which I think is too dangerous). I have decided to refuse all DMD's and keep on the abx as I was doing.
Last year I had 3 very bad relapses, the last one being in Sept. I started the abx in Nov and have today realised that its been almost 5 months since my last relapse. I truly hope this is a sign of things to come and the abx might stop further progression
We'll see, I'll keep everyone updated on any change
Another question...does heat intolerance improve with the abx
Can you tolerate the heat a bit better now? I guess I am eager to maybe start enjoying summers again! I used to love summer and now I dread it. Hopefully things will change in the future!
Just want to make a note on here about some improvements I have noticed, so that when I look back I have a record...
Yesterday I managed to do something I haven't been able to do since Sept. You know when you wash your hair and you bend and flick hair over head to towel dry, then wrap up hair and flick back to stand up? I did that lol, bit wobbly but just did it automatically like I used to :))I don't know if anyone understands what I mean, sounds really stupid when I read back lol!
Then today I picked up my son and walked around with him for a while before I realised that I wasn't holding on to or leaning against a wall to hold myself up, I was just walking and playing about. As soon as I realised I stopped as I still don't trust myself and wouldn't forgive myself if I fall with him, but I did it without realising and it felt good Now I just need to keep trying to build up my strength with physio/exercise and become more confident with my walking.
Final thing I did today which also made me feel really good...remember when I first posted I said that I couldn't walk at all without holding on to the pram for support...and over the padt few months I have been saying that my walking is improved to the poin I can walk a few paces unaided...well today I walked without the pram for about 130m I know 130m is nothing to a lot of people but for me that is huge!!
SO happy to hear about your walking improving. It's great when you can measure the improvement and not just 'think' it's somewhat better. I know I'm never going to take my physical abilities for granted, ever again.
23/02/14 – 25/02/14 – 3 day pulse
- Right hand fingers buzzing and a bit of a dull ache again
- Very cold feeling on my left foot
- Traps sharp pain (similar to after training pain, just I haven’t trained)
- Noticed I needed to pee more than usual during night (something I used to have to do before)
- Bit more stiff today (my stiffness had been a lot better)
- Runny itchy nose, sneezing (either coming down with cold or pulse is causing this)
- Walking slightly worse
- Bit unsteady on my feet, noticeable in shower
- Right trap painful (a weird, dull ache)
- Right hand still buzzing but not painful
- Still a bit stiff
- Hand buzzing, left foot feeling cold again
Improvements post pulse day 2
- stepped over garden hose (would never have been able to walk and step over something before, my balance wouldn't allow it)
- Could lift foot and put break on buggy (couldn't b4 due to balance also)
- Walked lots around supermarket, up to parents house, and out in garden with no knee pain and no need to sit down to rest
Post pulse day 4
Walking very stiff, could not walk much distance and knees were aching loads, which is what would happen after walking b4 starting antibiotics.
I wanted to record all of this but I also wanted to ask whether it is normal for the improvements to go away in the space of a few days?
Will keep posting any updates
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