This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi,

I just started antibiotics today.

This treatment sounds VERY promising, especially considering its the only one that may actually possibly cure ms (with a scientific base...)

One of the things which i was sort of ALMOST hoping for, was a MILD "Herxheimer-type" reaction. The reason: it would prove that something was not right, and the abx were doing something.

I asked my dr if a "normal" person would get this reaction from abx, and he said no (and had prescribed doxy already 4 times that day and didnt expect any of them to go through that).

My question i guess is, are there many out there that didn't go through herx?

Did any of you see major later improvement, but didnt go through herx under doxy and roxi? or did you get herx at the later added pulse dose stage?

Those that did get herx at the first stage, how long after starting? are we talking hours? days?

A bit about my MS. I have what i think is mild MS.
I have:
* tingling hands and feet (which have been improving to almost nothing in last two weeks since starting LDN)
* Bad balance
* I used to get very tired after 10minutes walk and had to sit to rest
* I used to have to wake 3 times to go to toilet during the night
* I have had it for 10 years (mis diagnosed as CIDP for 8)
* Prednisone (high 75mg/day) use to knock back a relapse

All these symptoms have been improving over the last 3-4 weeks since i have been off rebif (I had my worst relapse while on it, and it felt like it actually added new ms symptoms).

I take 4.5mg of LDN (last 2 weeks) every night (lots of stiffness the next day, which when you add bad balance makes it difficult to walk "normal like")

I am also on 80mg simvastatin.

As well as what appears like a truck load of suppliments.

Thanks.

CureOrBust- were you diagnosed with Cpn (chlamydia pneumonia) or are you taking the abx protocol on an empirical basis (based on your symptoms rather than serology)?

I'm taking Wheldon's protocol for positive serology on Cpn, for Chronic Fatigue and Fibromyalgia (along with a big crate of supplements, like you!). I can tell you that every antibiotic I've added has caused significant herx. Some took a couple of days to build up enough blood levels to get to bacteriocidal levels.

For example, I was started on tetracycline, which has both a bacteriocidal effect as well as bacteriostatic. That means that it both kills them outright, dumping endotoxin into your system and causing "herx," and inhibits their replication. Both doxy and azith are more bacteriastatic, so may cause less herx, but when used together or at higher blood levels they are also have bacteriacidal effect. 3 days into tetracycline I went through excruciating inflammatory pain, bone numbing fatigue and brain fog, discoordination, etc. Misreable for a week and a half. Switching to doxy (because it crosses the blood-brain barrier) I had little added effect, but adding zith is what kicked in another big herx. Same with flagyl, and now with amoxy.

However:
David Wheldon has reported that some people, with apparently low bacterial load, have little or no herx, even on Flagyl, but exhibit positive response to abx treatment by improvement of symptoms. I don't know anyone who is also on LDN who has started with the protocol, but since LDN is immunomodulatory, and a lot of the "herx" is your immune system cytokine reaction to the endotoxin, this could limit herx reactions significantly. So, if you don't herx, you'll have to do abx long enough to see if you get improvements: minimum of 6 months on Wheldon's protocol is what I've understood. The good news would be that you could ramp up into full dosage more quickly based on minimal "herrx."

jimk,

I havnt been diagnosed with CPn, just MS. I decided to give this a try, as it has little negatives (copared to not getting rid of MS itself).

Yeah, i also thought if I had no or very little hertz i could move onto the next stage. Thanks for confirming that thought.

I will be VERY surprised if my symptoms improve much faster than they are now (pleasantly i will add) that i am off rebif and on LDN and statins.

Good luck with your treatment also.

Hello CureOrBust,

I can't say I got any of the things described as typical 'herx type' reactions just when taking doxycycline and roxithromycin, certainly nothing like Jim went through. That came later with the metronidizole pulses, and even then not until the second go. I remember sleeping a lot, though. Everyone is different. When my husband tested me for CPn it was seronegative, as is often the case for people with MS, but I still got better.

Stick woith the LDN and statins and use the abx to get rid of the underlying infection. You might even find that you get les of a reaction with the metronidizole through doing this.

If you only have mild MS you will take longer to know if all this is working: I knew very quickly when I started to be able to use my right hand again, rather than holding it uselessly across my body. My disease was very aggressive at the time, though

Sarah

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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.

I have been on roxi & doxi for about a month now, and have decided to give the flagyl a go, tomorrow.

I have not had any herx as yet.

My question is, during herx, do you also suffer a fever. The reason I ask, I dont think I will noticably herx, but I have a digital thermometer to check for fever, which will hopefully pick up the slightest increase in temp.

And Anecdote, when you say the second pulse, does that mean a pulse of two days?

No, I meant the second five day pulse, but even then, the only clear reaction came with the third pulse, when I ended up in so much pain in my arm and shoulders that I was sitting crying in the kitchen, leant against the aga. Other than that I just felt miserable and tearful, which I can't call a 'herx' reaction, certainly. I still do on the booster doses, which is why I swapped to tinidazole last time. I never checked my temperature, sorry, I just assumed I was getting better by the complete lack of progression and the fact that I could gradually use my right arm. Apart from that one time I never had any of these terrible reactions which other people are reporting. I did feel rather strange and disorientated on the second pulse: I remember feeling as though I was walking along in a dream, I could see everything but I wasn't part of it. Every time the stuff just made me feel 'yukky.' so I'm not much help there, I'm afraid.

Sarah

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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.

Anecdote,

I knew you'd have an aga!

Bromley


[For non-Brits - an aga is a large cooker (range) which is particularly popular among the upper classes who live in our little island. The use of latin phrases is another sign that Anecdote is posh - and probably related to Queen Elizabeh II]

Hey, watch it you! We bought it second hand, reconditioned. I'm no posher than you and definitely no relation of HRM.

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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.

Anecdote,

Only joking. Although rumour has it that you keep your abx in a silver box which belonged to Queen Victoria and that Major James Hewitt is a close friend.

Hope you're continuing to see improvements.

Bromley

Damn, my secret is out!

Thank you, yes I am continuing to see improvements, but now I must get back to work!

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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.

My liver would not tolerate Avonex, Doxycycline, Rifampin, Flagyl, and Crestor (a statin). First went Crestor then Doxy and Rifampin. That was all of Feb. Now I have more knowledge and have made it VERY clear that I will stay on Doxy/Rifampin and do without the Avonex if need be. I would like to continue with the Avonex for any protection it may have until my next MRI which I would do now if I could. I was all of Feb. without abx because of LFT. Turns out if you need to arm yourself with enough knowledge to fight your own battles, you better do it. I think USA neurologists "MS specialists" should do some of the same and get out of the hole I suspect they are in.

I am still not certain what qualifies as a "herx" but I finished day 3 of Flagyl last night after not taking my evening dose because I could not do evening duties at the barn. No, Marie, I do not "bail out" when I get a cold. When I played in the orchestra I always said if I had to crawl, I would get there. This is serious stuff and in the end, doesn't physically affect anyone else. I will try very hard to fulfill my end of this bargain with myself.
I woke up this morning remarkably clear-headed and feeling wonderful and able to walk better than for years. I took my first day 4 dose, and in the 3 hours since, have regressed some but it was an exciting glimpse of improvement between the Flagys 9 (now on day 4) and 10. I have been saying for a while now that if I stopped here at this level, I could live with it, but apparently there is more to come. Every day has always been an adventure but this is all amazingly rewarding. The implications are so far-reaching. Every MS person should have access to this. Please keep posting, all you world-wide friends out there!

Riica

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2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.