Doing well after antibiotic treatment

A forum for the discussion of antibiotics as a potential therapy for MS
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agatha
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Doing well after antibiotic treatment

Post by agatha »

Hello there
Haven't posted in a while - I've been getting on with my life! Just wanted to give an update of the results of my antibiotic treatment. I did the Wheldon protocol (thank you so much Dr Wheldon adn Sarah!) and I am now been off the treatment for about a year. My previous increasingly aggressive symptoms of RRMS (which became much worse on the Swank diet) melted away within the first few months on the medication and have not returned. All my symptoms (leg weakness, leg tingling, arm tingling, loss of motor control in fingers, slurring speech, l'hermitte's sign, balance problems, urinary problems, terrible cognitive fatigue and brain fog, light sensitivity, hyper reflexia) have either disappeared or softened considerably. They still flare up a little if get very tired or have an infection but nothing new for ages. Before the treatment I was getting new symptoms every few weeks.

Near the end of the treatment I changed my diet to a paleolithic type diet ( actually very similar to what Terry Wahls has used with good effect) and this has brought further increases in energy and general health. I wouldn't say I feel entirely cured - I still get quite tired and I think if I really pushed myself I might have problems - but my MS has returned to being pretty quiescent and causes very little trouble. I am now looking to tweak the diet using anti inflammatory herbs and spices and I'm looking into balancing my hormones levels (have just discovered my DHEA is low). Interestingly, the chronic diarrhoea I suffered for several years before the abx has resolved, though i still take probiotics.

So, all in all a very pleasing response to treatment. Well worth the money and effort.

Agatha
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Re: Doing well after antibiotic treatment

Post by MacKintosh »

You just gave me the biggest smile...

Congratulations! Isn't it cool that we have beaten the so-called 'incurable' disease?!
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
SarahLonglands
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Re: Doing well after antibiotic treatment

Post by SarahLonglands »

Agatha, this is wonderful news and your thinking is very realistic.

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.
hopeforA
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Re: Doing well after antibiotic treatment

Post by hopeforA »

agatha wrote:I wouldn't say I feel entirely cured - I still get quite tired and I think if I really pushed myself I might have problems - but my MS has returned to being pretty quiescent and causes very little trouble. I am now looking to tweak the diet using anti inflammatory herbs and spices and I'm looking into balancing my hormones levels (have just discovered my DHEA is low). Interestingly, the chronic diarrhoea I suffered for several years before the abx has resolved, though i still take probiotics.

So, all in all a very pleasing response to treatment. Well worth the money and effort.

Agatha
Thanks for posting. It always feels good to hear from someone making progress. Hope you continue to get better.
Yes, I agree, abx are important but other areas such as diet, immunomodulation etc. can also offer great help.

For what it's worth, there's a couple of herbs that I have found very effective. One is liposomal Curcumin but unfortunately I seem to have an allergy to it so after a while it gives me an itchy rash and can't take anymore. The other one is Resveratrol. I found it very effective as an anti-inflammatory and also at raising my energy levels like no other. It seems to exert antiinflammatory, neuroprotective, antiviral etc. effects http://en.wikipedia.org/wiki/Resveratrol

If you ever find that your improvements kind of plateau on abx, I suggest you look into biofilm-reducing supplements. They are much more widely discussed on other forums. I found they make abx work more effectively. I personally think this is an aspect of chronic infections much overlooked in spite of clear scientific evidence that it plays a major role in helping pathogens hide from both from the immune system and antibiotics.
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agatha
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Re: Doing well after antibiotic treatment

Post by agatha »

Thanks for your replies - it is wonderful to be feeling so much better. The anti inflammmatory spices thing is interesting. Most herbs and spices inhibit inflammatory pathways which are known to be involved in MS (why can't the researchers look into this rather than inventing new chemicals which have toxic side effects?). The question is whether to take concentrated spice extracts of curcumin for example, or whether to just use culinary herbs and spices copiously. At the moment I am opting for the latter course as I feel there are less likely to be unintended consequences (I'm sure you've seen the betacarotene and smokers study - betacarotene turned out to be harmful for smokers, though carrots are protective) if we ingest the compounds as part of foods which have been used for centuries in traditionally healthy civilisations (Asia, India). Also, I'm guessing there is probably a synergy if we use many compounds rather than taking large doses of just one or two. So my plan is to add generous quantities of at least two or three herbs or spices to each meal, using a large variety. I also spice my tea as the Indians do. Today, I made a fermented lime pickle recipe using quantities of turmeric, black pepper, ginger and other spices. This will be both probiotic and anti inflammatory. Yum! The local ethnic foods shop is going to be seeing more of me in the next few months. This way of eating is of course is entirely normal in large parts of the world - but English cuisine is peculiarly deficient in taste! I wonder if anyone has looked into the protective effects of herbs/spices in prevention of MS?
Sabinchen
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Re: Doing well after antibiotic treatment

Post by Sabinchen »

Hi! Iam new to this page and i have ms since 2001(diagnosed). Iam doing no ms meds due to the fact that as I did them I relapsed constantly. Being on the paleo diet works best for me. So, long story short( i have no balance and use a walker, my right foot is dropping, fatigue is horrible and my mood swings are not pleasent) I believe in the Abx treatment what probably is a good start but I don't know how to tell my GP to give abx for my condition. Or to make him understand. Don't get me wrong..my GP and neuro are willing to listen but that is not enough this time.
I hope somebody is reading that and if there a tips you like to share i am very thankful. I am also thankful reading your healing or changes you experienced.
sabinchen
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CureOrBust
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Re: Doing well after antibiotic treatment

Post by CureOrBust »

Sabinchen wrote:I believe in the Abx treatment what probably is a good start but I don't know how to tell my GP to give abx for my condition. Or to make him understand. Don't get me wrong..my GP and neuro are willing to listen but that is not enough this time.
I hope somebody is reading that and if there a tips you like to share i am very thankful. I am also thankful reading your healing or changes you experienced.
Welcome. You probably would of been better off by being a little bolder and starting your own new thread instead of digging up a random old thread, where it could be lost.

I tried the Abx protocol a few years back, but it did not work for me. I am lucky in that my doctor (GP) understands that MS is a seriously debilitating brain disease, and he works on the principals of "do no harm". When I first asked him about the Abx's used, his first response was something like "I prescribe those all the time". So, he as comfortable with the safety of the Abx's and with my request, I provided him various print outs from the Vanderbuilt University supporting the possibility it may be CPn. Adding to this the ineffectiveness (and now the danger of today's treatments), he was comfortable with prescribing them; on the understanding it was a personal trial/investigation. If your GP is still reticent, maybe you could simply start the the first two (which is the normal process from memory) of Doxy & Roxy and monitor any results/effects. If the GP is still hesitant, then you may wish to try minocycline as a starting point, which has numerous studies backing its possible effectiveness in MS (as an anti-inflammatory). If you do have some anti-inflammatory benefits from the mino, this result may make them more likely to go further with the other Abx's
Sabinchen wrote:I don't know how to tell my GP to give abx for my condition. Or to make him understand.
Its not a matter of TELLING the GP to give you Abx's, you are ASKING for the prescription. I would guess the GP as with any professional hates it when a non-professional tells them how to do their job. Your presentation/demeanor could make all the difference.

I think your GP may be more willing to go outside the box of the standard accepted MS treatments, as compared to a neuro who would more likely use the standard treatments. I know none of my Neuro's would not have done it. If I personally still had no resolution, I would ask them for alternatives which MAY just have a chance for "curing" your condition. If they still are not helping, ask what your results for the Lymne (chances are they may of missed it, and therefore feel / understand their treatment has been lacking) ere, as the Abx's are also effective against Lyme. If still no win, maybe it is time for a change of GP. Remember, this is your life, and the Abx's are relatively safe compared to the brain damage guaranteed with MS.
Sabinchen
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Re: Doing well after antibiotic treatment

Post by Sabinchen »

Thanks for your answer. You see, i believe the first time in a treatment what never happened before so I am a little shaken up about these possibility( does this make sense? My motherlanguage is german so i might sound weird) This treatment just matches my believes in how a treatment could work out well. Even if not I am willing to try.
SarahLonglands
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Re: Doing well after antibiotic treatment

Post by SarahLonglands »

Sabinchen, I hope that if you ask your GP he/she might be willing to prescribe for you: some will but most won't. There is one site where antibiotics can be more freely discussed than here and most of the people who started out here moved there. It is cpn(no space)help(dot)org and it was started by former patients who did well and wanted to help other ill people. You might have seen it already.

You sound as though you could really benefit from the treatment, so do ask your GP and if you can't find any help there, someone on that site might have some good ideas.

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.
Sabinchen
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Re: Doing well after antibiotic treatment

Post by Sabinchen »

Hi Sarah,
first I want to say thanks for your reply. I will check out the page you mentioned. Actually i doubt that my GP will do that because he is very carefull. I try to work something out what makes him understand and every information I can gather. Also that money for meds are not an issue due to the fact that i am health insured (i am from germany) I have to built my case carefully and with a lot of sense. I act. do remember that when I had a UTI long time ago but I still remember because I relapsed and got abx and cortisone my legs got better littler quicker. I didn't relapsed since over a year and i believe it is because of the paleo diet. So the nutrition part is "covered" so to speak!
Sarah, if you have any informations you like to share i am very thankfull!
Sabinchen
SarahLonglands
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Re: Doing well after antibiotic treatment

Post by SarahLonglands »

Sabinchen, I will on the other site!
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.
Sabinchen
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Re: Doing well after antibiotic treatment

Post by Sabinchen »

Thank you, Sarah..I look forward reading everything helpfull!
Anunymouse
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Re: Doing well after antibiotic treatment

Post by Anunymouse »

You can order your own antibiotics, no DR required. I started ordering shortly after diagnosis, it was only after I told my regular Dr that I was taking them regardless that he started writing prescriptions. He's a nice guy and a good Dr but this is a bit off the beaten path.

I was hesitant originally as the company I order from is based in India, but after getting the anti's from the local pharmacy I felt exactly the same as those I ordered myself. And then I found that there are literally NO antibiotics made here, they all come from... india. So back to bulk orders at a lower price. I get about 6 months at a time +/- for a couple hundred bucks.

The only new lesion that has shown up on MRI for me was in the window that I had stopped all antibiotics. MRI after I started back on, nothing new.
Except for that 3-4 month window I've been on them for going on my 2nd year now.
Sabinchen
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Re: Doing well after antibiotic treatment

Post by Sabinchen »

i don't think i can order meds because they are very strict here in germany. I have to talk to my gp.
SarahLonglands
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Re: Doing well after antibiotic treatment

Post by SarahLonglands »

They are strict here as well, but there is someone in Sweden who works in Germany and buys stuff through Germany I think. However, your GP is probably the best bet. Here, if you only purchase small amounts at any one time, they don't get checked in customs but it ends up costing more. Maybe it is the same in Germany?
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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