10 Jun 2017 08:17 am
maybe it's just cap depression but having, done some research for my, significantly, older half-sister, who seems to carry ALL the same genes as me, I realised that, although she doesn't have MS, we have several similar symptoms and both of us (along with Dad and Grandma) have always had auto-immune disease (coeliac's, eczema, psoriasis, anaemia, both iron deficiency and pernicious) although we have all been raised to work hard and not to moan. But I suddenly worried that my immune system might be faulty, with or without this infection! Any thoughts?
10 Jun 2017 08:17 am
Hi JaccK,i agree, the immune system is key, definitely for MS. I don't agree that the cap is less effective for MS,the condition has four, known, stages, from benign, RRMS, secondary and primary progressions. I'm no scientist and have no idea why the condition worsens, but I believe the cap is most effective in the earlier stages and will improve prognosis, at all stages, don't forget the Wheldon protocol, based on earlier research by the Vanderbilt Foundation, was devised when David Wheldon's wife, Sarah, was diagnosed with SPMS. Thelonger MS, or any CPN disease is established, the longer, more difficult and less complete, the Outcome Could be, but, I'm sure, always beneficial. Pragmatism seems vital! Ihope you're using the cap and find it helps. Now, about that dodgy immune system .... !Jane
MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed chemo infusions to slow pro
10 Jun 2017 12:33 pm
Hi Jane, I did not mean that the CAP is less effective in MS, but I noticed that MS patients seem to tolerate it better. I saw here comments that MS patients could start the complete CAP within 3 months etc. I went through hell to tolerate jut one antibiotic. I could not tolerate even 300mg of NAC etc. But it might be just my (false) impression. It is not important. We all want to get healthy.About the immune system, I believe that vitamin D is really important for its function.https://www.sciencedaily.com/releases/2010/03/100307215534.htmI recently got a die off reaction after sunbathing last weekend, and the die off is still going on and on. And it was caused just by vitamin D (you can get 20 000 IU by sunbathing in one day)The official sources are starting to notice the connection to vit D and MS as wellhttp://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/expert… maybe what we all need is less antibiotics and really jumpstart the immune system.
Oh JaccK, now I understand! You could be right about us MSers! I'm on abx 1 and 2, easily tolerating them, although I had a few (mercifully short) bouts of depression, I kind of hope the final antibiotic will be more difficult! I take vit D, on consultant's orders, but, again, no reactions! It seems daft to want a bad reaction, but it's only then that we know good things are happening! Jane
MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed chemo infusions to slow pro
Jane, I think that the severity of the reactions to antibiotics depends on the total bacterial load. Some people with chronic fatigue can have large bacterial loads and get a lot of endotoxin release with antibiotics. Some people with MS have a much lighter load (even though it is in an awkward place) and so get milder reactions. Some lucky persons with MS get no reactions at all. The other consideration is that people react to endotoxins very differently, depending on the state of their immune system and their genetic make up. This often happens with N. meningitidis septicaemia.
D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]
12 Jun 2017 07:49 am
That is so reassuring, DW, thank you! My neurologist has asked me to see him again and I will have been away by then and am looking forward to reporting positivity! I took a large dose of vit D, copying JaccK, as I used to, every day, until hypotension became a problem and, certainly, feel worse, unless I'm imagining it!Jane
MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed chemo infusions to slow pro
Jaack, interesting you mention sjogren's syndrome. My mum has it but i dont. her & her sister have arthritis & i have just been diagnosed (at age 44) with arthritis in my hands as well! I suspect chronic CPN infection runs in our family.
24 Jun 2017 01:36 am
Jane, of course it could be a genetic predisposition. Then again, you are talking about a group of people who lived in close contact, so it could also be that they share(d) an infection. Either way, if antibiotics clear your system of cpn, you're still ahead of the game.
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 Mackintosh,i didn't know my Grandparets, who had all died before my older parents had me, also, my family are travelling showmen, so changed location, and neighbours, weekly with the fairground, although social circles are constant and extended family, almost, as important as close relations, so familial health trends are easily monitored. But , just as auto-immunity is familial, can CPN be, also? I've often wondered!Jane
MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed chemo infusions to slow pro
CPN is 'familial' in the sense that people who contract it tend to pass it on to those they are physically close to. If I have a lung infection, I'm most likely to pass it to my mother who's taking care of me, or my sister, with whom I share a bedroom, or my cousin, who's one of the few people to come visit while I'm ill. In the early days of this site, a lot of people started logging the illnesses of their families. Though family members might not have the same manifestation of cpn (i.e. they did not ALL have MS, or they did not ALL have rosacea), we realized a LOT of family members had so-called autoimmune or unexplainable diseases, and all of those diseases could be caused by CPN.
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
you are probably right.
you are probably right. Chlamydia is widespread in the general population, almost everybody has antibodies against it, but only a minority of us develop a chronic infection. And even if we do, our dieseases vary. I do not have MS, my main problem is chronic respiratory infection + brain fog. I too have several autoimmune disorders in the family - mother has Sjogren's syndrom, grandfather and uncle have rheumatoid arthritis, I have Hashimoto.I think about it in this way. If you have a certain genetic predisposition (certain HLA genes) and your immune system is further compromised (chronic stress, vitamin D defficiency, Th1 vs Th2 imbalance etc), you can catch chronic infection. In people with certain predisposition, it can manifest as MS, in other people in other ways. I certainly noticed by reading this forum, that the MS patients react less to the antibiotics than CSF patients. That is why we react differently to various supplements etc. We do not understand this infection yet fully, and information provided on this site is probably a pioneering work, but much more research will need to be done in the future. In any case, the immune system is the key.