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Experience Project.
Posted: Fri Oct 29, 2004 10:04 am Post subject: An Empirical Course Of Treatment
I am going to be following the regime for the treatment of adults with chronic persistent Chlamydia pneumoniae infection.
Doxycycline 200mg once a day
Roxithromycin 150 mg twice a day
After three months five day pulses of Metronidazole 400mg three times a day
Vitamins and Supplements have a big part to play in that they will help to repair some of the damage caused by MS
Vitamin C 1 Gram daily (antioxidant)
Vitamin B complex high dose daily (nerve repair)
Vitamin D 800 - 1000iu (4000iu in multiple sclerorsis) daily (endothelial repair)
Vitamin E 800iu daily (connective tissue repair)
Vitamin B12 5 x 1000 mcg tablets daily (low cellular levels found in chronic chlamydial disease)
1 fish oil capsule daily (tissue repair)
Selenium 100 200 micrograms daily (tissue repair)
Magnesium 300 mg daily (low levels found in chronic infections)
Calcium 500 mg daily
Regular acidophilus capsules (to restock gut flora after antibiotics)
People who have been reading about consultant microbiologist, Dr David Wheldon's treatment will recognise the above straight away. I was lucky enough to be seen by this wonderful, gentle and kind man last week. He was able to give me a private prescription for the three required antibiotics and I have already ordered them from the pharmacy and will be able to pick them up tomorrow. I hope that he doesn't get inundated with requests to see him! (I do think it is important to share my experiences though.) I had already tried a dialogue with my doctors and they have been unhelpful thus far.
I decided that I am going to follow the recommended regime as closely as I possibly can. As a subsequence I have been shopping on the internet and have ordered all the Vits and supplements also.
For interests sake, so far I have spent £110 on three months supply of vitamins and £320 on two months supply of antibiotics.
I was diagnosed with MS on 16th Dec 2003. I suffered with a heavy cold and sinus problems in January 2003, very shortly after that I started with my first MS symptom of nystagmus. Over the course of 2003 I had various different MS symptoms, L'hermitte's sign, pins and needles with numbness in my legs and trunk, burning sensations, all the usual stuff. My doctors wouldn't listen to me and told me that my symptoms were psychosomatic. By November 2003 I was in a bad way and I suppose you could say I suffered a major relapse and had to be hospitalised, I had a MRI scan and my dx followed. Right now I feel quite strong. I haven't had any new symptoms since about April 2004. I do have lasting symptoms of pins and needles in both of my feet and my right thumb, I suffer from fatigue, I have MS euphoria, and mild memory and cognitive problems.
This posting is by way of introducing myself and sharing my treatment. I will post again once I have started the course of antibiotics.
I've started my second week on the antibiotics and I thought it was time that I gave an update:
Although I still have pins and needles in my feet and right thumb, I have lost the numbness. For example, I can now feel the texture of the carpet under my feet. I'm still suffering with fatigue, it hasn't diminished in any way.
I have a clearer head and I think the euphoria is gone. I'm sad about the euphoria as it gave me licence to say whatever I wanted! (I wanted to put a twisted evil emoticon here but it seems that they aren't working!!!) I'm not sure if I'm so used to living with it that I don't notice it anymore or that it really is gone. I will analyse this one for a few more days and see if I have anymore situations where I lose control of my emotions, (I can get hysterical laughter over mildly humourous incidents).
I have discussed the way that MS has changed my personality with my husband. The euphoria and the cognitive impairment have both contributed to it. It is a strange irony but I like the euphoria, I am at risk of hurting people's feelings, but so far I have managed not to, it just makes me a happier, more care free person. The cognitive impairment however, makes any story telling or explanations labourious because I have a need to 'over cook' things as I need to 'think' out loud and people get impatient. I also have to ask people to explain things again, one of my most repetitive sayings is, 'What are you trying to say, I don't understand.' I know that my cognitive impairment may take a long time to improve, if ever. So I think that I may have lost my fun euphoric side but I'm still a slow thinker.
I believe that there is a difference between suffering from a 'fog' and the deeper cognitive impairment that I am also a victim of. The fog has lifted. It was like a wall that had been built in my head that made concentrating difficult and exhausting, or another way of describing it; white noise being in the way of my thinking. (see I'm over cooking it again!!)
For me, MS really is an invisible illness, as physically I'm okay, most of my problems have been inside my brain.
I haven't had any Herxheimer reactions but that may be down to the fact that I haven't had MS for that long, I don't know.
Making sure that I stick to the regime is heavy going as I'm taking so many pills that I rattle but I am determined to stick to it rigidly.
I'll be back when/if there is anything further to report.
Joined: Jun 18, 2004 Posts: 1472 Location: Bedfordshire UK
Posted: Mon Nov 08, 2004 5:40 am Post subject: Euphoria
Hello Magpie. Laughing inappropriately is how I was mainly afflicted with euphoria, apart from the habit of constantly saying: 'Don't worry, I'm getting better' when I obviously wasn't. It went so rapidly I had forgotten about it until I read this update. 'Oh, sorry, its just nerves' was my excuse when I noticed the funny looks from my husband.
Yes, Sarah we are a funny lot those of us who have euphoria. I was going to say 'suffer' from euphoria but I don't think that it is us that suffer!!!!
Just a quick adage to my thread:
This morning I woke up and did my usual morning stretch before getting out of bed. Usually my legs go into spasm but this morning they didn't, so I spent a good five minutes stretching my legs over and over again just to make sure!
You really don't have anything to be worried about, David is a lovely man who genuinely cares about patients' suffering. He sweetly said to me that he didn't care about charging, it was just so wonderful to see his wife getting better. (His wife, by the way, isn't as far away as you might think!). It is so different to come across a Consultant who is so modest, we're use to being made to feel inferior, but you'll soon see what I mean. Good Luck with everything and you are so right, we certainly don't have anything to lose but everything to gain!
Sorry folks but I forgot to add this to my thread and when I saw that Debbie is changing over it prompted me to add it!!!:
22nd December
I have changed the Roxythromicin to Rifampicin. This is because my GP refused to prescribe Roxythromicin. I now have all of my antibiotics via NHS prescription. The only side effect that I have suffered from Rifampicin is orange urine!!
I am feeling very well and incredibly strong and stable. I'm now looking forward to taking my first pulse of Metronidazole at the end of January.
Joined: Aug 09, 2004 Posts: 16 Location: London.England
Posted: Wed Jan 26, 2005 7:32 am Post subject:
Hi Magpie
so glad that you're feeling strong and well.
I stared the Rifampicin yesterday and immediateley felt stronger too,although today I feel a bit nauseous and hungry at the same time!
Hopefully,I'll continue to feel quite strong and I have to say that the orange wee is quite spectacular!
Take care and keep posting how you feel if you can.
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