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As you may recall, I am not diagnosed with MS but a "clinically isolated syndrome"; I have positive VEPs and unremitting symptoms consistent with mild MS. I have had two negative MRIs. I am undergoing antibiotic treatment with the Vanderbilt protocol (Amoxicillin, Doxcycyline, Rifampin, and pulses of Flagyl).

I am in the middle of my first pulse of Flagyl. I am keeping a symptom log and when I am several months into this, I will summarize it here.

I spoke to Dr. Powell yesterday and have some information I would like to disseminate for those undergoing abx treatment or considering it. None of this should be considered medical advice, but it may give you some interesting points to discuss with your doctor.

1. Those of us who have read Sarah's story were probably struck by how dramatic her reaction to antibiotics was, immediately. We should keep in mind that not everyone will react in this manner. Some people have a very limited reaction until their 2nd or 3rd pulse of Metronidazole, at which point they may have a more "classic" bacteriolytic reaction.

2. If you do a good job of adhering to the protocol and take your supplements, B12 injections, and charcoal etc., that alone may minimize your reaction substantially. I highly recommend generous B12 supplementation as well.

I myself am taking about 2 grams of charcoal every night and 4 grams while I am on the metronidazole. A tip: Take lots of supplemental FIBER. I personally take 4-5 servings a day of a mix of Flax Seed/Rice Bran/Orange, Grapefruit and Lemon Peel & Pulp...Jarrow, among others, makes a good one called "Gentle Fibers". If you do this you will be getting around 30g of fiber a day, which is over 100% of the USRDA fiber requirement (not including fiber gained through diet!) and it will help minimize stomach problems.

Most importantly, It will also act much as the charcoal does to minimize porphyric reactions to the treatment.

3. In my treatment, the amount of metronidazole is being set by how well I tolerate it. I am tolerating it well, so I am going up to 1500mg a day instead of 1000mg a day.

Also, although the pulses are set at five days every three weeks, this can be expanded a bit if you can tolerate it. I'm planning to only wait two weeks between pulses and go for seven days instead of five. If I run into any problems with tolerating this, I will cut back to the original regimen.

4. There may be some value in re-running CPn serology after treatment has been ongoing for a while. The theory is that after two or three pulses of metronidazole, CPn starts getting killed, big-time, and the immune system is better able to recognize them and thus the antibody response increases. I think it is worth checking, anyway.

5. Rumor has it that the CPn bug doesn't like heat. Some patients have described a porphyric response after sitting in a sauna for an hour. This might be worth trying if you have access to such a facility (and AREN'T reactive to heat like many MS patients are- be conservative of course).

6. Some CPn patients have described that their joints begin popping after initiating antibiotic treatment. I've experienced this, as well as knee pain that I've never had before. Interesting!

7. I am not experiencing any fatigue as a result of treatment, but actually, increased anxiety and agitation. I have felt increasingly agitated over the past two years which has led many of my neurologists to say, "You can't have MS- you're too energetic." But it's hardly a good energy, if you know what I mean. This agitation has worsened considerably during treatment, especially since adding the Rifampin.

8. Oh well, might as well include this- I have experienced the following symptoms (most of them relatively mild in degree) since beginning treatment:

Consistent Symptoms:

Worsening of Restless Legs Syndrome-type symptoms (quite marked)
Agitation/Anxiety
Insomnia
Headache
Dizziness

Transient or temporary symptoms (lasting from a few seconds to days):

Temporary worsening of some specific neurological symptoms
Throbbing pain from the bladder (woke me at night, even! Saw urologist, all tests negative)
Blurry vision
Nausea
Mild (transient) tingling in extremities
Slurring words
Difficulty concentrating
Joint pain, joints popping
Metallic taste in mouth
Throbbing pain in extremities

None of this is all that bad, and in general I've been tolerating the treatment quite well!

Sarah and others, feel free to chime in.

Discussion is welcomed!

I'm of course just reporting my personal, individualized treatment under the care of a doctor, only for educational purposes. You should consult your doctor regarding your own treatment.

A very good posting, Daunted, which should help quite a few people.

Those of us who have read Sarah's story were probably struck by how dramatic her reaction to antibiotics was, immediately.......

This is true, but the response was to the bacteristatic part of the treatment, for some reason. I didn't get much response to the metronidizole until the second pulse.

It is definitely a good idea to take masses of fibre as well as the charcoal. I have now got to the stage of being slightly remiss about the charcoal, so I should take note! Not the fibre, though, my diet must include about a tonne a day of the stuff.

Reading the little discussion that has been going on in "Questions to those already on antibiotics", about metro/flagyl doses, it occurred to me this morning that Dr. Powell was seeing how well you tolerated the stuff before prescribing the full dose. This seems very sensible because some people respond very badly to it. I don't know what she was taking it for, but it makes my GP feel nauseous in the extreme.

One of the main reactions I had after the third pulse of metro was not popping joints but extreme pain in my right arm and shoulder. This was slightly disconcerting because it moved around: here one minute gone the next, only to reappear somewhere else in the arm. It always faded away at night, though.

As far as your consistent symptoms go, I had insomnia at first, but this has now gone completely. I also had a headache for only a short period, which again moved around. I can still feel dizzy now, especially when bending down then straightening up. I can feel more agitation and anxiety now than I did at first, but I think this is due to the realisation of 'what could have been' and also the realisation that so many people are now trying this due to my postings. Sometimes I wake up at night worrying about it, even with the general lack of insomnia. I find that 40mg of propranolol (a beta blocker) helps here. Many musicians take it before a big solo performance and it works very quickly.

I think I need to do a bit more thinking about what I did go through at the time and post about it: I know I should have kept a journal, but I am dreadful about doing this sort of thing. I did start, but I got annoyed and deleted it all.

Sarah

Daunted - excellent post.

By coincidence, I am also 4 days in to my second pulse of metronidazole. The first pulse was ok apart from a bit of nausea, but the second pulse has been somewhat more noteworthy.

Since starting Metronidazole my symptoms include the following:-
Muscle twitches all over body
Burning sensation in thighs
Extreme pain in both heels
Transient tingling in extremities, and
(Arthritic like) pain in joints (knees, and fingers)

Scaggs

Anecdote wrote: I can feel more agitation and anxiety now than I did at first, but I think this is due to the realisation of 'what could have been' and also the realisation that so many people are now trying this due to my postings. Sometimes I wake up at night worrying about it, even with the general lack of insomnia.

Sarah,

You wouldn't be human if you didn't feel like you had dodged a bullet!

And your postings certainly are having a great impact on people's lives, and with that does come a certain amount of existential angst, I am sure. I for one am quite thankful that you did come on-line and post about your experience.

I forgot to list a side-effect that I have had since I started the Doxycycline: Euphoria. It is odd to feel euphoric without an accompanying good mood, but I have, for weeks now! It feels pretty similar to a mild illicit drug effect, actually.

One other interesting side-note (and perhaps a question for Dr. Wheldon): Some patients being treated for chronic CPn seem to have a low body temperature- I certainly do. Over the years, my temperature has ranged from 95-98.3 but is usually in the 96s or 97s.

I know in acute infection a fever is usually seen, but I wonder if the lower body temperature is a function of the parasitic effects of the CPn stealing the body's energy...is that plausible? And of course a bacteria like CPn would beneift from a lower body temperature....right? hmmm... interesting stuff.

Any thoughts appreciated!

Oh, and thanks to both Sarah and Scaggs for chiming in.

Great post Daunted,
I've finished my fourth pulse of metro. A few weeks ago, I was feeling like I someone had been pulling on my arm and partially dislocated it. I hadn't done anything to hurt it. It healed up over the next two weeks much like a pulled muscle would. I thought maybe it was because I was walking more upright or something.

Colin

One other interesting side-note (and perhaps a question for Dr. Wheldon): Some patients being treated for chronic CPn seem to have a low body temperature- I certainly do. Over the years, my temperature has ranged from 95-98.3 but is usually in the 96s or 97s.

I know in acute infection a fever is usually seen, but I wonder if the lower body temperature is a function of the parasitic effects of the CPn stealing the body's energy...is that plausible? And of course a bacteria like CPn would beneift from a lower body temperature....right? hmmm... interesting stuff.

Interesting point, this, although I wish people in the States could cope with Celsius! We live in a pretty mild climate and my husband doesn't seem to feel the cold at all: I do, or rather did, and tended to dress in winter as though I live above the arctic circle. Less this year, though. I will have to check to see if this winter is warmer than average or not. With the undoubted effects of global warming it is difficult to say.

As far as the aches and pains which you all three have been experiencing with metro/flagyl, it will all pass! I had been keeping rather quiet about mine, hoping that not everyone would have to go through it, because I know that some people here suffering from chronic fatigue have got immeasurably better whilst claiming not to go through any discomfort. Perhaps they just want to apper a bit too macho.

Sarah

Daunted,It's an interesting point you make about low body temprature. This has been a problem of mine only since my last exacerbation almost a year ago now. I thought it was due to thyroid dysfunction, so I had my thyroid levels checked. T3 levels were normal but T4 was high. My doctor at the time seemed to think that was no big deal. I just didn't feel right about blowing off the high T4 levels so I started doing research and found some info about Wilsons Thyroid syndrome. I made an apointment with a doctor that treats this, I go in to see her next wed. It's interesting that a lot of the symptoms of this syndrome match MS symtoms. Anyway, I never thought that the low body temp. could be caused by the CPN infection. Hope I'm not wasting my time and money goint to see this Dr.

Daunted, apparently, Dr. Powell has noticed low body temperatures in people with CPn infection. I thought I should investigate this a bit more realising that my feeling cold was nothing to do with a low body temperature. Was this one of the things he tested in you?

The so called "Wilson's Thyroid Syndrome" does sound, quite honestly, like hypothyroid trouble about which I know nothing, so I hope you aren't wasting your money Smayfield.

Sarah

Sarah,

He mentioned to me that many of his CPn patients were presenting low body temperature. He tested my thyroid in depth and there was no problem with it- and this Wilson's Syndrome isn't really a Syndrome, in that it isn't recognized by mainstream medicine. Neither is chronic, seronegative CPn infection, yet, so no judgment, but I'd be cautious.

I thought ithe low body temperature thing was interesting, and I recalled having a temperature of 97 several times, so I went to my records- I have medical records from 1994 on.

My temperature (at the doctors for various maladies) ranged from 95-98.3 (35-36.8 C) , but is usually 96-97 degrees Fahrenheit. (35.5-36 C). So I consistently have a low body temperature- and no doctor has ever mentioned it or thought it had any significance.

If chronic CPn infection has caused a lowered body temperature in my case, that means that I've had this infection at least ten years.

This is all highly speculative but I think, quite interesting.

Thanks to both of you for your input. I really appreciate the second hand information from Dr. Powell. If I would have known that low body temperature was common with Cpn infection before I made the appointment I probably would not have done so. I really wish I had the funds to fly to Sacramento to see Dr. Powell. Anyway, I figure that this new doctor must be fairly open minded to be treating for this Wilson’s thyroid syndrome, since like you say, it is not accepted by the main stream medical community. When I faxed my medical history papers to her office I also included Dr. Weldon’s papers too. Since I’m already 2 months into treatment, hopefully she will go along with it. And who knows, maybe she can help others too. I may be incorrect, but from my understanding correct body temperature is important for certain enzymatic and metabolic functions to work properly. So maybe it’s the bug’s way of disrupting the immune process, or perhaps a person has the low body temperature first and this allows the bug to proliferate. I seem to remember reading in Dr. Swank’s book that people with MS often have low body temperature although I found nothing of that sort on pubmed.

If chronic CPn infection has caused a lowered body temperature in my case, that means that I've had this infection at least ten years.

This is all highly speculative but I think, quite interesting.

Speculation between two doctors who do know a little about CPn:
It seems that a lowered body temperature is quite common with CPn infection, but which comes first, the lowered body temperature, which means CPn can take advantage of, or the infection which causes the lowering of temperature? The conclusion is that it could be either, because the infection finds it easier to thrive in the lower temperature but can also evolve so that it can reduce the temperature itself, to make life easier for itself.

Daunted, I think it quite likely that you have had the CPn infection for at least ten years, because sometime in the teens is the most common time for acquiring the chronic infection. It might not cause any damage for years, and then any damage depends on one's genetic predispositions, or, with some people, it might be cleared spontaneously.

Sarah

Daunted wrote: 6. Some CPn patients have described that their joints begin popping after initiating antibiotic treatment. I've experienced this, as well as knee pain that I've never had before. Interesting!

I have experienced the popping joints also. I wonder if it is a sign of the CPn reaction to the antibiotics, or a reaction to the antibiotics not related to CPn?

Who knows, but it doesn't last anyway, so don't worry. Doxy/mino is very good at getting into the joints, though, and clearing out any undesirables! Or, at least, holding them in non-reproductive mode.

Sarah
.

Tman wrote:I have experienced the popping joints also. I wonder if it is a sign of the CPn reaction to the antibiotics, or a reaction to the antibiotics not related to CPn?

Impossible to know, but I am also experiencing popping joints on Doxycycline/Rifampin/Amoxicillin.

I had a case of mild "tennis elbow" three months before my neurological symptoms came on; only problem is, I don't play tennis or golf!

Daunted:
What quantities of Doxycycline/Rifampin/Amoxicillin do you take? When you pulse the Flagyl do you take all 4 antibiotics at the same time?

Thanks