My name is Malcolm, I live in East Sussex, UK and I am 41 years old. I was diagnosed with MSi last August. I was having problems with my right leg while on holiday in Ireland, I found that I couldn't walk for more than about 20-30 minutes before my leg seemed to seize up and I started to hobble. I also experienced drop foot and found that when driving my right leg would droop to the side and I would over accelerate and over brake.
This led me to having an MRI scan (arranged privately by my mother, a retired GP because of the 3 month wait). The radiologist diagnosed MS instantly and pointed out the numerous lesions on my spinal cord and in my brain. This was later confirmed by an MS specialist neurologist (Eli Silber). My current condition is by most standards very mild, I still have a problem with my right leg, but it only surfaces when I exercise (run or walk) for 20 minutes, I also have a fairly constant discomfort around my waist. I was suffering from brain fog, in that I found it very difficult to concentrate and focus, but this has been alleviate by taking LDN.
I have been actively researching MS since my diagnosis. I have cut out all dairy, cut down saturated fats to a minimum and no longer eat red meat. I exercise regularly and generally look very healthy (I have lost 1.5 st in weight). What I find disappointing is that with my diet and exercise regime I would normally expect to feel fantastic, but I don't feel that great. I am beginning to realise that my diagnosis of MS is really affecting my quality of life because it seems to take away my feeling of excitement and optimism about the future.
I suffered asthmai and eczema as a child and as an adult I have been pretty clear of asthma, but I have had occasional periods when it has returned for a few months at a time. I remember experiencing quite a lot of illness as a child and taking many courses of antibioticsi. At about 14 I had pneumonia, I remember being told I had a collapsed lung which meant it had become full of liquid.
The possibility that I have an infection of c.pneumoniae seems plausible to me (especially given the pneumonia) and I am keen to start CAPi. I want to use this blog to form a record of my experience. My first act is to send my GP some info and ask whether he is willing to support me on this treatment.
Malcolm
___________________________________________________________
Malcolm
Wheldon Protocol since July 07. Doxyii 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MSi Aug 06.
Good show Malcolm! (and
Good show Malcolm! (and other assorted stereotyped Britishisms!)- I can see you've been doing quite a bit of searching, absorbing and thinking about this. Have you shown any of the Handbook info to your mother? I wonder what her response to it is. She might have some pull to convince your GP to go for an empirical treatment. I look forward to your postings here.
CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tinii daily (Continuous protocol)
___________________________________________________________
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Great to see you here
Great to see you here Malcolm, and even more so because we happen to live int ehsame part of the world.
Your mother will be a great asset to you, if she can see the good sense of this treatment. Regarding your wellbeing, be warned though that this is not an easy option, but it is the only one I have come across that give the MS sufferer hope of halting the progression of the disease and with a bit of luck reversing some of the damage.
Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006
___________________________________________________________
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Hello again, Malcolm, I see
___________________________________________________________
Oh, yay! Somebody else
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
___________________________________________________________
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
Thank you all for your
Thank you all for your support, it is great to find a site that is so responsive. Reading some of the stories and posts here I realise that it would be easy to ignore MSi until it turns really nasty. I want to do everything I can to minimise that possibility.
Malcolm
___________________________________________________________
Malcolm
Wheldon Protocol since July 07. Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MSi Aug 06.
Mal, I would probably
Mal, I would probably rephrase that to addressing the MSi early, but I know I've had a CPNi infection most of my life. It's just that the cpn invaded my brain and brought on the symptoms I simply could not tolerate, though I now realize it was causing my periodic bouts with extreme fatigue and brain fog long, long before it got inside my brain and affected my walking and neurological functions.
Get started and just kill the source, so you can get your life back soon.
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
___________________________________________________________
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
Mac, I understand that your
Mac, I understand that your problems were caused by CPNi and you have benefit greatly from CAPi, but presumably not everyone with MS has CPN, but perhaps many do?
I have read about Roy Swank and the book on MS by George Jelinek and they have had great success in changing diet and using various supplementsi, which is why I have changed my diet. Is a dietary approach consistent with the CPN theory or do different people have different underlying causes of MS and therefore respond to different treatments? This is what I am wondering.
___________________________________________________________
Malcolm
Wheldon Protocol since July 07. Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MSi Aug 06.
Malcolm, Welcome and
Malcolm, Welcome and congratulations on arriving here so early. You mentioned missing your "feeling of excitement and optimism about the future." Like so many users on this site, I've spent countless hours investigating MSi treatments on the internet. Many commercial sites would have you believe that what they are selling will get rid of MS and give you back that feeling you miss. We are selling nothing here. If you beat MS and get that feeling back, it will be because you struggled and endured. As Michele related, this is not a "feel-good" treatment, and it requires courage and patience. It especially requires courage and patience of one who is not far progressed into MS. The courage is the easy part, if you tell yourself the truth. It's likely that Cpni is involved in your MS, and if it is, this is the only thing that will stop it. The struggle brings the pay-off you want.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, antivirals, heavy metals chelation, LDNi, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.
___________________________________________________________
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
There is no conclusive
There is no conclusive theory about what causes MS, on this site some of us think that Cpni and other pathogens, plus a genetic predisposition to MS may be responsible for a great number of cases. It is also apparent from the reports that people make here and from my own experience that it is not only people with MS that have neurological problems that improve with the CAPsa one of the rea
I think th. Quite a number of people, myself included, have brain fog, parasthesia and peripheral neuropathy. Cpn is a very common pathogen and by the age of 50+ maybe 70% of the population will have been affected in some way. It could be said that many of the ageing ailments could be put at the door of Cpn in particular, but probably other pathogens too. There is some research being done at the moment on the relationship between Cpn and artheriosclerosis, Alzheimers and arthritis.
I think that one of the reasons this site is so responsive is that the group of people who post here have a pretty clear understanding of how difficult this treatment can be and that we all need each other to get through it.
We will be rooting for you Malcolm.
Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006
___________________________________________________________
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Actually, presumably most
Actually, presumably most everyone with MSi does have a cpni infection, if not as a cause, then as a cohort. The papers on the Vanderbilt University work state 'a substantial subset', which in 'cover your rump-speak' means just about everybody, but we're not going to claim it's everybody because that will leave us open to lawsuits from that one percent of one percent who don't benefit from treatment or don't take their pills properly or have been SO ill for So long, they've passed some unknown point of no return.
Just for the sake of disclaimer here, this is my opinion, albeit a studied and experienced one. By the way, I don't have any interest in the Swank diet or program. I eat what I always ate, I drink what I always drank. And while we know here that this treatment MIGHT be difficult for some, it has had virtually no effect on me except reversing the downward slide I was in. No big episodes, a couple of tiny bouts of momentary nausea when taking pills on an empty stomach and a couple of months of hair loss and regrowth as the cpn in my follicles died. Totally do-able, no problems at all.
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
___________________________________________________________
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
Welcome..... I am so glad
Welcome.....
I am so glad you are taking control of your health & wellness. This is an awesome support site. I pray for your strength & resolve & commitment to beating the nasty bug.
Grace & Peace
Ruth
CFIDSi/ME, FMSi, IBSi, EBVi, Cpni, Babesia, insomnia (sleep- melatonini, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, Doxyi 200 mg day pm, Azith 250 mg M/W/Fday
___________________________________________________________
CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#13 1240 mg X 3 days 8-7-08CAP for MSi - worth a try.
CAPi for MSi - worth a try. Welcome Malcolm, the site will help you in your war with MS. Mood changes with MS are common (I speak from personal experience). I found that counselling (many sessions with psychologist, psychiatrist, group + individual CBT) was helpful but it does change ones perspective on life.
Navigating the NHS is not simple but I get the CAP abxs from my GP (with a letter from DW) so it is possible to work the UK system.
I hope you have started on the NACi and vit D already and will add the other supplementsi bit by bit. (NAC and vit D are much cheaper from the USA even after airfreight and VAT). NAC should be taken for a month before you start the abxs, also get a baseline liver function test before you start abxs.
LDNi and CAP are OK together (I write this a pharmacist) and the cheapest UK source of LDN is mail order from a Glasgow pharmacy. Spain is cheaper if you visit.
A diagnosis of MS is life changing but MS does not have to control the rest of your life. ... Mark.
Mark Walker - Oxford, England.
RRMSi Nov 91, Dx 97. CFSi Jan03. Copaxone + continuous CAP (NAC, Dox, Rox) Feb06 to May 07. Met pulses from Jun06. Intermittent Abx from June 07 onwards.
___________________________________________________________
Mark Walker - Oxford, England.
RRMSi Nov 91, Dx 97. CFSi Jan03. Copaxone + continuous CAPi (NACi, Dox, Rox) Feb06 to May 07. Met pulses from Jun06. Intermittent Abxi from June 07 onwards.
Adding my welcome! You will
Adding my welcome!
You will find that there are a number of folks with CFSi/ME (Chronic Fatigue Syndromei /Myalgic Encepholm...) and others with GFA (Generally Feeling Awfuli) and the like. A recent post has appropriately chastised us for not keeping our glossary up-to-date with abbreviations so if you see some you don't understand, just post and ask!
The GFA folks are most likely catching on to this bug before it reaches a more serious, more recognizable form of malady.
Tom~West USA. CFS/ME, Chem Sns., ADD. Adderall, Doxycyclin 200mg since 6/5/07, found CpnHelp site 6/6/07, add NACi 600mg AM & PM (already on most other supplementsi). Azith @ 250mg since 6/17/07
___________________________________________________________
Tom~West USA. CFSi/ME, Chem Sns., ADD. Adderall, Doxycyclin 2x100mg since 6/5/07, found CpnHelp site 6/6/07, add NACi 600mg AM & PM (already on most other supplementsi). Azith @ 250mg since 6/17/07
GFAi folks have a collection
GFAi folks have a collection of symptoms that don't have a single name, such as MS or CFSi, but our symptoms are quite well advanced and range from alopeciai, diabetes, arthritis, melanomas, asthmai, IBSi, parasthesia, endometriosis, rosaceai, high blood pressurei, interstitial cystitisi, prostatitis etc. Most of us have more than one of these symptoms but no one has ever made any kind of link between them. These symptoms have plagued us for a great part of our lives and therefore are likely to take a long time to get better if ever. Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006
___________________________________________________________
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
I thought GFA was
I thought GFA was Generally Falling Aparti, but Generally Feeling Awful is also good, or do I mean bad?
CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tinii daily (Continuous protocol)
___________________________________________________________
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
I hope you don't think I
I hope you don't think I belittled the condition in any way, shape, or form! I have several friends who identify with GFA.
As for the re-naming, just another reason to attack that glossary. (Jim- Is it something we can all add to?) I expect that everyone on the site can identify with 'generally feeling awfuli' (or worse).
Best
Tom~West USA. CFSi/ME, Chem Sns., ADD. Adderall, Doxycyclin 200mg since 6/5/07, found CpnHelp site 6/6/07, add NACi 600mg AM & PM (already on most other supplementsi). Azith @ 250mg since 6/17/07
___________________________________________________________
Tom~West USA. CFSi/ME, Chem Sns., ADD. Adderall, Doxycyclin 2x100mg since 6/5/07, found CpnHelp site 6/6/07, add NACi 600mg AM & PM (already on most other supplementsi). Azith @ 250mg since 6/17/07
Tom, Just to clarify
Tom, Just to clarify "Generally Falling Aparti Syndrome," it's a term that was invented on this site. The collection of symptoms/conditions varies from one individual to the next, presumably because Cpni and other chronic co-infectionsi target us where we are genetically vulnerable and/or where life has dealt us bad cards. For instance, Michele and I share a few symptoms/conditions, but mostly, they differ. My collection is pretty much the same as for others in my family, some of whom need to be on the CAPi much worse than I do. We passed Cpn back and forth to each other for many years with our chronic sinusitis, frequent bronchitis, and occasional pneumonia.
Joyce (self)~generally falling apart: cardiovascular, diabetic, arthritic/DISH, symptoms of Sjogren's Syndrome, and a variety of other health issues / started CAP May 07, antivirals, heavy metal chelation, 7-keto, Lauricidin, astaxanthin.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAP since August 06, antivirals, heavy metals chelation, LDNi, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgGi/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.
___________________________________________________________
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Tom I did not think that you
Tom I did not think that you were belittling our problems, but I was kind of disagreeing with what you said about catching it before it got too advanced. Were you implying that maybe it would turn into something more like MS or CFSi if we had not treated it when we have? I would agree with Cypriane that the reasons us GFAi have not got MS etc, is because of our genetic predispositions rather than because we caught our diseasesi early.
Apologies to Malcolm for sidetracking his post. However an interesting discussion has come out of it. And yes we can add to the glossary ourselves, I have from time to time... Just go to glossary heading on the left in the blue box and follow the path until you get the option of adding to it.
Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006
___________________________________________________________
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006