Thinking about getting started on the program
I finally found a doctor that knows whats going on. Last week blood work showed Indererminate results for Mycoplasma pneumoniae.
Lots of big words but at least now I know why I feel like crap most of the time. I've read some from the handbook and the treatment sounds long and complicated. Some people have symptoms from the meds and feel worse and some just breeze through the whole thing. The doc said I was in the lower end of indereminate and the treatment might not take as long. I don't do 'sick' very well so if I feel worse than I do now I will be a real B----.
So my question is-do I really want to do this treatment. I am a busy person and don't have time or patience to just hang out in the bed.
I'm also a musician and a quilter so I need my body to function and my mind to not have brain fog.
Thanks
Kathy
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No, the question is, do you want to eliminate an infection from your body that might turn into arthritis, chronic fatigue, MSi, irritable bowel, or worse? Do you want to be sick and in a perpetual decline, or do you want to rid yourself of a disease, and perhaps be a bit inconvenienced while you do so?
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
Hi, Kathy,
When the infection becomes progressive infection, you are so going to wish you had treated it BEFORE it ate you up . Do you have someone now, who loves you and could be your safety net if the treatment gets really miserable? If you begin to feel REALLY bad, the infection is also really bad. ...ALREADY. Think what it is going to be in another several years! I think you have to decide whether to make the long term commitment now or later. Either way, you are going to end up having to get rid of the beasties eating you. The music and the quilting will always be there;and they will be there WHILE you do the antibiotic therapy. (which you may well be able to still do). Your good health is already declining.. It's your life and your call.
Erica SOOO wishes she had known ten years ago what she knows now. She can't play her guitar or make jewelry or go to work. She is totally disabled: hands, feet, legs, except her brain works.
Wishing you WELL!
MSmom
Perhaps you should read this...
http://cpnhelp.org/how_chlamydia_pneumoniae_
If you don't treat it will eventually catch up with you.
JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni
I guess it depends on your diagnosis. What are you battling? Do you know you have a chronic Cpni infection? If so then treating it is a good idea.
If you have CFSi you may want to look this site over: http://chronicfatigue.stanford.edu/
I do have CFS/ME and it seems I'm battling multiple pathogens including Cpn. I'm on both antibioticsi and antivirals.
Best, Timaca
on valtrex 500 mg tid
http://whispersfromthefather.me/
Heya!
I agree with MacKintosh. It'll only catch up to you, so treating it now will certainly benefit you in future. If you choose not to treat now (it is your individual choice), the bacteria load will only increase and the die-off effects of treatment in future will be prolonged and arduous.
This bacteria inconveniences all of us, but the treatment certainly doesnt. It lets us know that we are not 'incurable' and 'disabled' but stong and abled. I can see how the treatment does inconvenience - if you're referring to the break down effects of Cpni - but health is something we unfortunately have to fight for.
FOr me, if it means no more MSi relapses, no more fatigue, no disability and certainly a brighter future.. im all for it.
Good luck in whatever option you choose.
M
..SYMPTOM FREE 06/2012.. RRMSi diagnosed - 01/2010 CAPi commenced 18/11/2011 *Doxycycline 200mg *Roxythromycin 300mg *Flagyli 1200mg 3 days/month
The doc did blood work for Mycoplasma pheumoniae or something like that. There is no Lyme disease present but the autoimmune test show the phenumoniae.
She said if I decided to start I would be taking NACi 1600mg/day for a month. Not sure if that is all at this time. I'm still trying to wade through the info on this site.
How soon does one start to feel better, how have you felt during the initial treatment etc? Lots of questions to be asked I guess.
Thanks for you input.
Kathy
Myrapee,
Finally, you can comment and not get captchad. Glad to see you back! I missed you.
Enjoyed your reasoning for the CAP.
MSmom
MSmom - thank you for the kind words! it feels good to have some freedom of speech without being labelled a spammer. i felt like as though i was being punished for being a chatterbox xxx
Kathy - I havent started Abxi yet (Monday i will!). however, I've been reluctantly taking 600mg, then 1200mg and now 1800mg a day of NACi + other supps. The NAC is good for killing the elementary bodies, it also protects your liver as its a very potent antioxidanti (im loving all these anti- pills) - i suspect you'll remain on it throughout treatment. I've read a few stories, and starting NAC before Abxi seems to lessen the impact of breakdown as some EBs would have been slaughtered prior to the massacre at the hands of doxyi/roxi etc.
I found in the beginning, it took me a while to bounce back from nac. Now on 1800mg, I feel the effects for approx 1-2 hours - then my mind becomes clear as a summers day.
M
..SYMPTOM FREE 06/2012.. RRMSi diagnosed - 01/2010 CAPi commenced 18/11/2011 *Doxycycline 200mg *Roxythromycin 300mg *Flagyli 1200mg 3 days/month
Fibromyalgiai, CE/CFSi, Post Polio Syn.
Kathy – welcome! You are so lucky to have the opportunity to do this protocol before your health has deteriorated to the extent that you can’t do all the things you are able to do at the moment. As to how soon one starts to feel better or how you feel during the treatment – everyone reacts differently, so that’s not easy to answer. I think much probably depends upon how severe your symptoms are to begin with, and how long you’ve had the symptoms. The best thing is to listen to your body and take things slowly. Whoever first said that this is a marathon, not a sprint, was spot on.
Myrapee – I’m counting down the days for you and keeping my fingers crossed! Not long now!
Birdie – welcome, too! I’m sure you’ll find lots of help and support here. If we have a specific question or comment, we tend to use a new forum post for that. It’s good to set up your own blog too though, to log progress etc, and to generally share your experiences. The blog makes it easier to refer back to things and keeps it all in one place.
Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) doxyi(05/11) roxi(06/11) tinii pulses(12/11-03/12, 10/12-01/13), amoxi(02/13)
Hi Kathy,
Okay, thanks. I will start a blog as a first step then. I've been looking at the ones posted by others. So, next step. I would like things in one place for structure. Helps during the fog.
I enjoy reading your responses. Best, Birdie
Fibromyalgiai, CE/CFSi, Post Polio Syn.