This Is MS Multiple Sclerosis Community: Knowledge & Support

I read several posts here with regard to reactions to and side effects of abx. I think if someone is on the Vanderbilt or Wheldon protocol for a long time, the most important thing would be to gather info on handling the side effects of or reactions to the abx from those doctors ( Sriram, Stratton, Wheldon, etc.) who apply this treatment protocol.

As none of our doctors have experience with this protocol (they just do prescription as a favor), it would be really valuable to help their work. In general, doctors are used to giving drugs to a patient and if any side effects occur they stop and try a different drug if neccessary. Obviously, in this case no doctor knows what to do if such thing happens as they are not trained treating MS with abx. They do not know if they can stop one or more of the abx to see if they caused the problem or if they can try a new abx, take a pause, etc.

I would assume that those doctors at Vanderbilt must have encountered this problem. Unfortunately, when I tried to contact dr. Sriram he refused to give any advice. I understand that he can not recommend taking abx for MS, but I do not understand why he can not say anything about handling side effects of or reactions to abx in general. There are plenty of forums on the net where doctors answer questions without being held liable for any advice.

Just a few side effects the leaflet attached to the drugs indicate:

Roxyithromycin:

SIDE EFFECTS
All medicines can have unwanted effects. Sometimes they are serious, most of the time
they are not. Do not be alarmed by this list of possible side effects. You may not
experience any of them.

Tell your doctor if you notice any of the following and they worry you:
• Oral thrush with a white, furry, sore tongue and mouth.
• Vaginal thrush with a sore and itchy vagina and/or discharge.
• Nausea, vomiting, stomach pain, diarrhoea, flatulence.
• Red and/or itchy skin.
• Headache, tiredness, dizziness, ringing in the ears.
• Loss of appetite.
• Altered taste.
• Tiredness.
These are the more common side effects of Roxithromycin-RL. Mostly, these are mild
and short-lived.

If any of the following happen, stop taking Roxithromycin-RL and tell your doctor
immediately, or go to Accident and Emergency at your nearest hospital:
• Swelling of the face, lips, mouth or throat which may cause difficulty in swallowing
or breathing.
• Severe persistent diarrhoea.
• An allergic reaction, as itchy skin, rash, swelling, asthma.
These are very serious side effects. You may need urgent medical attention or
hospitalisation. All of these side effects are very rare.

Tell your doctor immediately if you notice any of the following, in particular if they
occur several weeks after you finished taking Roxithromycin-RL:
• Severe abdominal- or stomach cramps.
• Watery and severe diarrhoea, which may even be bloody.
• Fever, in combination with one or both of the above.
These may be rare but serious side effects of Roxithromycin-RL. You may suffer from a
serious condition affecting your bowel. You may need urgent medical attention. Do not
take any medicine for diarrhoea without first asking your doctor.
Other side effects not listed above may also occur in some people. Tell your doctor if you
notice any other effects

Doxycyclin:

Possible side effects:

Like all medicines, Doxycycline capsules can cause side effects,
although not everybody gets them.
Stop taking the capsules immediately and seek urgent medical
advice if:
• you notice that your skin is very sensitive to light (you may get
a skin rash, itching, redness or severe sunburn when out in
sunlight or after using a sun bed).
Contact your doctor at once if the following reactions happen:
• wheeziness, difficulty in breathing, fever, sudden swellings
of the face, lips, throat, tongue, hands or feet, fast heart rate,
low blood pressure, rash or itching (especially affecting the
whole body), pericarditis (inflammation of the membrane
surrounding the heart)
• swollen tongue, watery diarrhoea, fever and cramps
(pseudomembranous colitis), soreness and itching around the
back passage and/or genital areas, inflammation around the
vagina, or thrush of the vagina or mouth
• worsening of systemic lupus erythematosus (SLE).

Tell your doctor if you notice any of the following side effects or
notice any other effects not listed:
• Blood: altered numbers of certain types of blood cells, you may
notice that you bruise easily, have nose bleeds, or suffer from
infections and sore throats, porphyria (sensitivity of the skin to
sunlight, inflammation of nerves and stomach pains).
• Glands and hormones: discolouration of thyroid tissue (does
not affect thyroid function).
• Central nervous system: headache, increased pressure in the
skull (severe headaches, blurred and/or double vision, blind
spots), permanent loss of vision, bulging fontanelles (soft spot
on head) of infants.
• Ears: tinnitus (ringing or buzzing in the ears).
• Gastrointestinal tract: stomach pain, loss of appetite, feeling
or being sick, heartburn, diarrhoea, difficulty swallowing, sore
or painful tongue or mouth, inflammation and/or ulcers of the
gullet, discolouration or underdevelopment of teeth.
• Liver: changes in liver function tests, inflammation of the liver
(hepatitis), jaundice (yellowing of the skin or white of the eyes),
liver failure and inflammation of the pancreas (pancreatitis)
• Skin: severe skin reactions such as erythema multiforme
(circular, irregular red patches), Stevens-Johnson syndrome
(rash with flushing, fever, blisters or ulcers), toxic epidermal
necrolysis (reddening, peeling and swelling that resembles
burns).
• Muscles and bones: muscle or joint pain.
• Kidneys: an increase in urea in the blood.
If you notice any side effects, they get worse, or if you notice any
not listed, please tell your doctor or pharmacist.

Tinidazole:

Possible side effects:
Like all medicines Fasigyn may cause side effects, although not everybody gets them.
Tell your doctor immediately if you experience any of the following symptoms after taking this medicine.
Although they are very rare, the symptoms can be severe.
• Sudden wheeziness, difficulty in breathing, swelling of eyelids, face or lips or tongue, rash or itching (especially affecting the whole body).
The following side effects are rare with Fasigyn and you should contact your doctor as soon as possible if any of the following occurs:
• dizziness or vertigo
• numbness, tingling, pain or weakness in hands or feet
• clumsiness or unsteadiness
• fits or seizures
• fever or chills and painful ulcers in the mouth or bottom (rectum)
• sore or swollen mouth
• redness of the face or neck.

The most common side effects that occur in people taking Fasigyn are listed below. These may go away during treatment as your body adjusts to the medicine. Tell your doctor if any of these side effects continue to bother you.
• nausea (feeling sick) or vomiting, loss of appetite,
• diarrhoea, stomach pain or cramps
• headache or tiredness
• furry tongue or unpleasant metallic taste
• dark urine

Fasigyn can sometimes cause a temporary reduction in white blood cells which does not usually give you any symptoms.
If any of the side effects gets serious or you notice any side effects not listed in this leaflet, please tell your doctor or pharmacist.

Hi Lib, by and large, these side effects are not experienced by most people to any great extent. I managed doxycycline and roxithromycin easily: well. I sicked my doxycycline up once when I took it and straight away jumped into the shower without eating.


Metronidazole most people find disgusting: the metallic taste lingers and lingers. Tinidazole is slightly better. Both can make you feel depressed, which is why they are pulsed.


Oh, and rifampicin has little imunomodulation: when I changed to it for six months at first it made me want to walk in circles rather than a straight line, but I did get used to it.

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.

Hi Sarah,
I think that some people do not experience major problems from abx, just as many do not from immune modulatory drugs. However, some even dies from both and some has serious problems from both. According to WHO 8000 people die annually due to taking too much antibiotics. Anyway, I have problems for a few months. All doctors told me that long use of abx is not good at all and my current problems with my guts, stomach, bladder, etc. is from the long use of abx. All said that long use of abx causes infection, cold, etc.. They just diagnosed urinary infection for me again. Also gut flora is destroyed by abx according to my doctors and they said no one knows how much it can be redevelopped by probiotics and diet. So, they all advised stopping taking abx if there is not an urgency for its use.

So, now, I am just thinking about stopping the protocol. I think drugs can not be taken for a long time without control and adjustments to the patient's reactions. Doctors are not informed what they should do in any case to avoid such side effects if they are doing the Wheldon or Vanderbilt abx treatment. Should they pause or modify the protocol, etc. to handle side effects? Unfortunately, at Vanderbilt they give no advice about the application of their own protocol. So, then, how can they expect other doctors to prescribe abx for this treatment? At least there are some well intentioned doctors (out of Vanderbilt) who does without knowing about the Vanderbilt or Wheldon protocol, but they are also warning about the risks.

So, all in all, it is good that we can start the protocol, but what is on later on?

Lib, where can I find this WHO information about 8000 people a year dying from taking antibiotics? In the UK people with meningococcal and other septicaemias often will die because they have to be given enormous IV doses very quickly to stop the death which would otherwise ensue.

Maybe you troubles are due to long term use of antibiotics and you should take your doctor’s advice, but maybe they are due to something else. I didn’t think you had been taking the stuff for that long. One thing is for certain, though, antibiotic use does not cause colds or other infections!

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.

...............................

This does not sound good. I am new here and wondering what I can expect if I start the abx. My family doctor already told me that taking abx for more than a few months can cause problems. Now, when I am reading these lines it seems to me that these problems are not addressed yet.

So, if I meet any problems with abx, I can rely on only my judgement, even though I am not a doctor. For God's sake, we are talking about a prescription drug.

Aren't any doctor familiar with this abx protocol in this forum??? At least, in CCSVI forum people can ask them and consult with them.

Hi Sarah,
regardless of what is causing the problem or the infection, how can they do a lab test if I am on abx? This is why they usually take you off the abx for 10 days before blood or urinary test.

Sorry, but even the CPn Help handbook says that viruses surface during CAP treatment as latent but surpressed viruses and fungi emerge as immune response lowered. To me it seems logical that you might be more susceptable to cold or flu if your immune system is down. CPn Help handook also says that inflammation and bowel problems are part of the process.

So, my question would be how can I get any of these problems checked out with a doctor? What can he do?
I know that many of the side effects indicated in the leaflet are rare, but let's face it MS is also a rare illness, but we have it.
By the way, my urine test showed bacterial infection two weeks ago, even though I have been on abx for almost 6 months.

I would be really glad if I could find a way for my problems as I would like to continue the Wheldon protocol. I planned to do 1 year to see if any result. Any experience in such cases of your husband?

Lib, I can’t tal about David’s patients, it would be unethical unless they talk about themselves, which I am doing about me and I had no problems. I must add that I never had the noral childhood viruses so maybe there was nothing to re-emerge but these latent viruses sink back as your immune system becomes tougher with the treatment. My immune system reallyhas become stronger and quite quickly because firstly I haven’t had a cold since 2003 and also I used to be very allergic to nsect bites, especially mosquito bites. I think they like the smell of my blood because they still bite me as much but with hardly any reaction.

To Hebron and Gogo and anyone else: there are no antibiotic doctors writing here because they are too busy: the ccsvi doctors who write here just test the patients then send them on for operations if needed. I do have a small list of papers so if you send me your email addresses I will forward them.
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.

This is incorrect. Dr. Sclafani most certainly does treat patients.

My mistake, sorry!

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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.

Sarah,
I greatly appreciate your help that you have provided so far here in tims and private. It is always good to hear about others' experiences. It gives hope and encouragement. However, as it seems Wheldon protocol is worked out well and it is quite straight forward, to me the most important thing where more help would be needed is how to handle the potential side effects, which might be not serious, but as many of us are not medical doctors we can not know whether it is or not when it happens. I am not sure how representative this forum is with regard to side effects, but I have a guess.

Both legally and ethically, you do not break any confidentiality when you speak about things in general and describe patients groups, not an individual (of course, if your husband makes it public) Knowing more about side effects occuring in a greater patient population would help people here what to check up with their own doctors if something occurs.

One question: My fourt pulse of tinidazole is due circa after 10 days. I leave out two weeks between pulses as it was suggested in the protocol. I am just wondering if it causes any problems if I postpone the next pulse by a week?? I will be abroad that time and I am just afraid that would be too much to bear.

Thanks,
Lib