All i need to know is we know very little about ms.
Darren
“Real progress” was made very evident to me recently when I took my rebismart in to show my GP. She was stunned and remembered the time when MS patients used to have to go into hospital regularly to have “infusions”, she said almost like a dialysis machine. All well and good, I hear you say when your GP obviously remembers the distant bad old days. But…she is no more than 40 …so not so distant days !!! That shows the kind of progress that I, for one, am very grateful for. Incidentally, I have friends whose daughter is a pharmaceutical scientist and works on developing meds, albeit not for MS. When I asked her why, she said that her aim is to develop a drug that “will alter the course of someone’s Illness”. And incidentally, she earns just over £27,000. Hardly a fortune really.
yes it is a frustrating situation. I think it upsets people, myself included, mainly because the harsh reality is that by the time the researchers and the neurologist know anything of value, it’ll likely be too late for most people.
This is why people look into other avenues, myself included. Everything was experimental at one time
I haven’t seen any reference here (yet) to the website Cpnhelp.org which has a wealth of info about Dr David Wheldon, antibiotic treatment, patients stories, including that of Sarah Longlands, his wife, links to the detailed research by Dr Charles Stratton et al, of Vanderbilt University, Nashville, Tennessee, USA, and links to the research over the last decade proving the connection between Chlamydia pneumoniae and MS. Also details of a simple self administered test showing you whether you have the respiratory infection Chlamydia pneumoniae (not to be confused with an STD of similar name, but no connection). The test is conducted by taking amino acid capsules - NAC- N - acetyl cysteine, which kills off part of the three parts to the life form of the infection. Swanson - and others - sell 600mg capsules of this for £11 on Amazon. The Stratton and Wheldon antibiotic protocols are clearly explained
Actually, if you read through this thread, Frances suggested that Dr Wheldon was non-profitmaking. I cannot find any post that argued against profit until later.
This is, of course,a long way from the actual facts. The vast majority of PwMS have RRMS. People with RRMS are offered a wide range of drugs/medications/treatments. If these are not available to everyone - blame NICE, they set the criteria. It might be more appropriate to criticise the make-up of NICE - ask how many people making financed based decisions have no financial training for example.
As for the suggestion that “researchers are making money out of us” - to anyone who thinks like that, I would suggest that if you think it really is that easy, why don’t you go and do it?
But shall we look at this in a way that even those without any scientific knowledge or trainging might just understand?
Suppose I am a GP with a Person with MS as a client. I come up with a “treatment” based on, shall we say, Oil of Evening Triffid. I administer this and the client does not get any worse - like literally no more relapses. I can claim what I want, but what I cannot establish is that my client has simply had a very long relapse, and my wonder treatment has had nothing to do with it. No nothing whatsoever. Of course, I might not want to know this anyway. Extend this to some of the treatments currently offered
CCSVI
TMJ
A dental orthosis
A regime of anti-biotics
MY special diet
or MY special diet
or MINE.
And now figure that if one of them is right - then the rest of them must be wrong. The first question is “which one is right?” Followed of course by “are any of them right?” Because unless there is good evidence to support one of these treatments, then it has to be disregarded a a serious treatment
The thing is: all these treatments have their supporters who get very excited if someone questions their pet treatment. Sort of: “How dare you criticise the X treatment, it’s brilliant”. This comes back to the Wheldon treatment. One of the anti-biotics featured in the video is one called Metronidazole. This has a caution in the BNF that Clinical and Laboratory monitoring if the treatment exceeds 10 days - Dr Wheldon suggests that his treatment should go on for at least a year. Think about it … And while you are thinking about it, look up the side effects.
Research is like anything else - it costs a lot of money. Lots and lots and lots and lots of money. The people doing the research do not see much of this - it’s a bit like the NHS where the people doing all the hard work get paid peanuts and the bulk of the money goes to the top. I have been involved in research, I do have some idea of the costs, I know how a researcher on £25K a year can be charged out at £120K. It does not make a lot of difference if that is being charged straight to a customer, or to a company project - it is still a substantial escalation. Just as a comparison, think of the noble Lord reported at the weekend to have wanted £12000 a month for his services in just promoting someone’s interests.
Geoff
Metronidazole ?? For a year ?? Really ?? I have first hand experience of what a weeks worth of this can do to your liver. Concerned…
A Laughh for the Wekend…
Interesting Puzzle…
1. You are on a horse, galloping at a constant speed.
2. On your right side is a sharp drop off.
3. And on your left side is an Elephant traveling at the same speed as you.
4. Directly in front of you is a galloping Kangaroo and your horse is unable to overtake it.
5. Behind you is a Lion running at the same speed as you and the Kangaroo.
6. What must you do to safely get out of this highly dangerous situation?
See answer below
Get your drunken ass off the merry-go-round.
This is a long one!.. Last September I decided to give the Wheldon antibiotic protocol a go. I read about it on Cpn.org website and got in touch with Sarah Longlands, David Wheldon’s wife who has MS after she posted on this site. My understanding was that you need to give the protocol at least a year before making a judgment on whether it was working or not. I live in Spain and have a sympathetic GP who prescribed the drugs for which I pay (they’re not too expensive). By the way there are 3 different antibiotics involved. Metronidazole is only taken for a few days once a month after the other 2 are well tolerated. I thought I wouldn’t write about my experience until after a year but since this topic has come up again, I have decided to share it. I have SPMS and seemed to be deteriorating quite rapidly. Last September I was walking with a walker and could maybe manage 100m. Main symptoms were difficulty walking, numbness, bladder problems, spasms in legs ranging from mild to very painful, muscle stiffness and very bad balance. NAC is also taken on this protocol and neither this not the other antibiotics had a bad effect on me. So what was the outcome? Well, 9 months later, my MS is quite a lot worse. I can probably walk about 20m with my walker but it’s really tough going. The numbness is much much worse, as is muscle stiffness. The other symptoms are about the same. When you read the stories on the website I get the impression that you should expect to get worse before you get better but, to be honest, I’m not hopeful about improving. Through sheer stubbornness I’m going to carry on with the protocol until September and then post my experience on the website and see what feedback I get from the Cpn community. They seem like a supportive bunch. I can’t say that there seem to be that many positive stories although some people with MS have reported a good outcome. This account is just a factual record of my experience and neither an endorsement or a discouragement. When you have SPMS and the medical community have pretty much given up on you anything seems worth a go providing you feel it is not actually harmful - a personal decision. Hope this is helpful to anyone who may read it and feel feel to message me with questions. All the best, Karen
Hi All, I am reading all with interest, negatives and positives, fact and fiction, hope and defeat. Wishing you all well, whatever course you follow. The real answer ; Leap on the elephant and steer it to splat the kangaroo , now you can beat it all 
Paul
Thank you for posting this. I’ll look forward to your September update.
Karen x
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Wilx you are very brave. I look forward to september when I hope things have improved for you. Well done and good luck. Its certainly an interesting concept and deserves a look at!!!
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Hi all, I’m new onto this forum, my wife was diagnosed with ms 18 months ago, and has gone down hill quite quickly, I heard about Dr Weldon’s protocol about 9 months ago, my question is, has anyone in the uk managed to give it a go, we are very interested in trying but with our nhs obtaining the correct antibiotics is very difficult!! Thanks in advanced.
Hi
I’m really interested in this, and know i’m a little late reading all the posts. #highhopes did you mean there is an actual test you can buy on Amazon to check for infection?
I have PPMS and this is another hope, i seem to be going through a long list, ticking them off one by one, without any joy so far.
I hope you all keep well.
Neil
Hi paul
I too am going to try and go down this road. Have not started anything yet…not sure how i will either. You are right it is difficult. I won’t give up though.
Take care
Neil
I found David Wheldon’s protocol at multiple sclerosis and Chlamydia pneumoniae and printed out the entire index of papers for my internist. (No way was my neurologist going to agree to go down this path.) I highlighted the treatment section with antibiotic regimen and went in for a regular check up visit with paperwork in hand and my fingers crossed.
After perusing the stack of papers, my internist’s first question was, “What does your neurologist say about this?” I explained that I didn’t think my neuro and I would see eye to eye on this. She paused and said, “I’ve prescribed heavier doses of antibiotics than this for acne. As a human being, I cannot see preventing you from wanting to try this. I know I would, if I were in your shoes.” She went on to remark that the antibiotics were not extreme dosages, the treatment was nothing alarming and she was curious to see how the next few months would go. She did ask to draw some preliminary bloodwork and sure enough, I am chronically low in Vitamin D. (Wheldon mentions this in the video: MS Cure? Can Multiple Sclerosis be cured? - YouTube)
Prior to treatment: I am unable to walk at all. I can stand with support but not stable enough for a walker. My dorsiflexion to lift up my toes is gone so I use a motorized scooter to get around. Since my eyesight isn’t perfect, I have to squint one eye to sharpen images when I turn my head. My speech is a bit slurred and my fine motor skills are weak and don’t allow me to write legibly or pick up small items. Buttoning a shirt is next to impossible. That is just a few of my starting points that I am using as reference to see how the treatment will affect me. I hope to update with positive progress by spring.
Since starting on the first two antibiotics three weeks ago, I had one brief day where I felt worse. I upped my probiotic and felt better by the next day. There have been no severe reactions to the antibiotics and all the supplements have been well tolerated. Mentally I feel stronger, clearer and more energized. I plan to go back into the gym this next week to continue my strength training. I am praying this information helps even one person to have hope. To try one more thing is sometimes the biggest leap of faith because nothing has worked yet. I encourage anyone with MS who is reading this to empower themselves to take action and proactively be involved in their own recovery. I have spent the last 20 years having each new thing not be the answer for me, but I am determined not to give up on myself.
At risk of making a tremendously long post, here are the links to more David Wheldon information:
The Index: Multiple Sclerosis: a chronic infection
multiple sclerosis and Chlamydia pneumoniae (Evidence & treatment schedule)
Chlamydia pneumoniae and MS: questions and answers. (Q & A)
N-acetyl cysteine (N-acetyl cysteine)
antibiotic resistance in C. pneumoniae (antibiotic resistance)
updates (Ten years of Sarah’s progress - thru Sept 2013)
I am a blogger & author so you can reach me at my site: robertmoore007.com
Thanks for reading.
Very interested to hear how Robert and Karen doing. Thank you both so much for posting. Robert Moore 007 and Milx. Am currently on beta interferon and do hyperbaric once a week. Also loads vit D and vits plus trying sugar free last two months based on varios microbial protozoa theories - search on dr stephen fry and protozoa. Very concerned that we get info based on neurology research and treatment approaches for symptoms but little for causes except for Wheldon. Are there microbial pathegen researchers and similar coming up with at least trial treatments at this point? Respect to all researching MS. Surely some of the answers coming soon. Sorry for long post. Very seriously considering wheldon. God bless all and Happy Christmas folks
I am wondering how other people are getting on with the David Wheldon protocol. I found it the most inspiring piece of hope. I think things move forward when either a doctor or their wife gets MS, and each of these doctors has a particular speciality outwith of neurology. Surely this is enriching rather than threatening - we need new and inquisitive minds who are open to searching for the truth.
I am awaiting my first neuro consult after waiting for 3 months with worsening symptoms. My GP has started me on the protocol just this week and it feels like my best chance. If you have that particular bacteria in your brain then this is the answer, although I know there may be many other causes.
I think the fact that the two people posting about their experiences of this (Robert Moore 007 and Wilx) never posted again probably tells you everything you need to know. That is, this was just another “cure” that did absolutely nothing for them. I would love to hear that I was wrong about that.
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ls there a ‘test’, that you can get privately, to see if you have this bacteria problem.?
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