Should or shouldn't I?

A forum for the discussion of antibiotics as a potential therapy for MS

Should or shouldn't I?

Postby Albhoy » Wed Jul 12, 2006 6:54 am

Long time reader first time poster.

I am RRMS. was diagnosed in 2002, but first symptoms (double vision, poor co-ordination and feeling like someone had put a hot pan under my right buttock when I sat down in my chair at work, leading to very strange looks when I jumped up) began in 2001.

I am not badly affected, well not as bad as some people which has made me feel too guilty to post on boards such as these, but I have read and re-read posts on antibiotics and also Dr David Wheldon's web site and I need some assistance in helping me make the decision to give antibiotics a try.

Just now I am on LDN (3mg, or 3ml really as it is in liquid form) and I do think that it has made a slight difference in how I feel.

I suppose my big fear is that I try it and it doesn't help as most of my lesions are in my spinal cord (I think) as I suffer from L'Hermittes, urinary problems, restless legs, foot drop, and I know that infections in the spinal cord are harder to tackle.

If I did want to try abx then I know my own GP would never prescribe them but I am seeing a private GP, who has an MS clinic, and I was going to pass the info on to him for his thoughts.

Any advice would be magic!

Thanks

Al
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Postby SarahLonglands » Wed Jul 12, 2006 8:34 am

Al, I'll write later, but right now I'm rushing to get some paint on a canvas before it dries. It is so hot at the moment, it dries almost as soon as I have mixed it.

Sarah (David Wheldon's wife) :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby SarahLonglands » Wed Jul 12, 2006 10:49 am

Hi Al, time for a tea break so I'll write whilst drinking.

You should never think that not being too badly affected precludes you from either posting here or finding out about antibiotics because you are interested in them as a treatment.

Everyone, I would think, is worried when they first start that they will find it doesn't help them, whether most of their lesions are in the spine or in the head, but the first aim of antibiotics is to stop progression, then see what happens. It is more difficult if all your lesions are in the spine to get around the lesions, because there is obviously so little space to move around, but stopping progression is just as likely as anywhere else. The best example of that is Guner, who posts in this very section. You maybe have already read his postings. He was diagnosed with primary progressive disease when he was 25, I believe, whilst studying in the States. Ten or eleven years on, and back home in Turkey, he is in a wheelchair, but within months of starting treatment somewhat over a year ago, he managed to stop all progression of the disease. You might care to send him PM. Also Katman, who also writes here. She is away until nearly the end of the month, though, showing her goats at the National Goat Show in Indianapolis.

If you have read all the posts about antibiotics, there are also many in the Regimens section, where I post my updates, and many other people who have been helped enormously. Another place to look is a site called http://www.CPn Help.org where many of the same people post, as well as others treating for different ailments often caused by CPn.

You say you have read David's website, what I would suggest you do is both write to him and also print out the pdf file on his site:

http://www.davidwheldon.co.uk/ms-treatment.pdf

to show your private GP. I think I might know who he is, if he has prescribed the LDN for you. He would also be welcome to correspond with David. This might be a very good thing because quite a few people started by taking LDN then moved onto abx, often taking both, as well as statins. Some people say that this is not a good idea because you never know which is benefiting you. I say what does it matter if you are getting better? This comes from someone who had only ever taken abx twice in her life, for scarlet fever and an infected mosquito bite.

I wasn't tested for CPn until a few weeks after starting treatment, and then I showed minimal antibodies, when one might have expected them to have risen a bit by that time. That is why David often just treats empirically. CPn is notoriously difficult to test for.

Take care,

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Re: Should or shouldn't I?

Postby CureOrBust » Thu Jul 13, 2006 5:20 am

Albhoy wrote:I am not badly affected, well not as bad as some people which has made me feel too guilty to post on boards such as these

you should NEVER feel excluded because of this. Welcome. And you dont sound all that unaffected to me.

Albhoy wrote:I need some assistance in helping me make the decision to give antibiotics a try.

I am personally giving everything a try. This is a disease which can turn from mild to extreme with no obvious reason. And I personally wouldn't let the problem of no-one prescribing them become a reason to not try (says he with the open minded doctor). Fiind someone who will prescribe what you want to try. Take your health into your own hands. Thats my advice.

Anecdote wrote:This might be a very good thing because quite a few people started by taking LDN then moved onto abx, often taking both, as well as statins.

I am on all three, I have been on all three for nearly a year. I do have regular blood checks to check i am not doing any harm to my liver. As long as this stays good, and i dont go downhill, my doctor is happy to write the prescriptions (since i also did very badly on rebif).


Albhoy wrote:I suppose my big fear is that I try it and it doesn't help as most of my lesions are in my spinal cord (I think)

My biggest fear is that I DONT try something, that just might help me.
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Postby Albhoy » Thu Jul 13, 2006 7:06 am

Thanks folks.

I have e-mailed David and also forwarded a link to his web site to my private GP.

What really grabbed me was that in his web site David said that Cpn starts off as a respitory infection and I had pharangytis in my early twenties which cleared up after a course of antibiotics but re-surfaced a couple of years later but not as bad.
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Postby SarahLonglands » Thu Jul 13, 2006 3:13 pm

Evening Al,

I'm glad you wrote to David earlier today and forwarded a link to his web-site to your private GP.

CPn does always start off as a respiratory infection, but sometimes years before any other symptoms show. Either that or it can be so low level that you don't remember even having one. That was me. I got my first MS symptom at 24, but being diagnosed at over 40, I certainly can't remember if I had a respiratory tract infection just beforehand. I did tend to get bronchitis a lot after that, though.

I hope your GP is willing to take this seriously and get you started as soon as possible. You do have a head start with him, if it was he who prescribed LDN, I feel.

You also have a head start with at the very least controlling this disease, by not waiting until there are no other options.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby MacKintosh » Sun Jul 30, 2006 11:53 am

Al, Hopefully, by now you've gotten all the info you need to make your decision. As for feeling guilty about asking early for help, stop it. Just stop. I had one incident (optic neuritis) and was told I had probable MS. Within hours, I was on the internet learning everything I could about MS. I was diagnosed on 19 August 2005. I had prescriptions for antibiotics in my hands the first week of September. I started vitamins/adjuncts immediately and gulped down my first doxycycline on 06 October 2005. I shudder to think where I would be now if I hadn't reached out to Sarah and to David Wheldon at the end of August last year. I was in a rapid decline of one MS symptom to another to another, with no respite. No one wants to see you have to go through whatever MS hell they have gone through, in order for you to have more 'credibility' as a patient in need. The idea is to hit the cpn bacteria hard and fast, before it can do its damage. Granted, abx therapy has brought people back from terrible disability, but I (and you) don't want to be in a wheelchair or using a walker at all, EVER.
Let us know how you're doing? (As for me, the cascade of symptoms stopped dead within two weeks of starting abx, the brain fog is gone except for rare mild episodes, I now have zero MS symptoms and that vague feeling of 'something's not right with me' is gone, too.)
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
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