This Is MS Multiple Sclerosis Community: Knowledge & Support

I was diagnosed with MS, and recently diagnosed as having Lyme disease (positive western blot).

Is anyone being treated with antibiotics, IV or oral treatments for Lyme and/or MS?

And also if you are being treated with antibiotics, which doctor do you have - Neurologist, Lyme Doctor, General Practitioner?

Also, is your treatment covered by your Insurance?

Please let me know and thanks for your help,

Rob

It is great you are getting treatment so fast. I am being treated with oral antibiotics and my insurance has covered to date. My GP is helping me with the wheldon protocol.

Yes to all your questions. If you have Lyme then you will be more likely to be treated by a doctor (of whatever flavour) with long term antibiotic treatment. Cpn (Chlamydia Pneumoniae) and Lyme protocols are similar but if you want to see what an antibiotic protocol for MS looks like then go to www.davidwheldon.co.uk/ms-treatment.html
There are a sizeable number of patients with MS undergoing this treatment, my daughter Ella is one of them. I believe and so do many of the other people involved in this treatment that Cpn (Chlamydia Pneumoniae) is one of the pathogens responsible for MS, but there are others.
Some people suffering from Cpn or Borrelia infections may never develop MS but other with some sort of genetic predisposition may.
Neurologist faced with an MS diagnosis get blinkered into believe that it is an autoimmune disease, this has not been proven. We tend to believe that the immune systems is doing what it is meant to do, ie clean up the disease organism and the tissues it has affected, however in doing that it causes damage to the tissue, which in the case of MS sufferers is in vulnerable neurological places such as the brain and Central Nervous System. If the neurologist is prepared to treat the Lyme disease then you and s/he should see improvements to the MS.
Treating Cpn is a long term treatment, we often compare Cpn to TB because you have to take a combination of antibiotics for a long time, months and years rather than days and weeks. Cpn is difficult to detect and therefore not as well known as Borrelia, doctors often confuse it with Chlamydia Trachomatis, which is the sexually transmitted version of the pathogen. Chlamydia Pneumoniae (Cpn) is very common in the general population is transmitted in the same way as a cold or TB and is likely to cause little trouble to most people until they get old, unless they happen to be genetically predisposed to MS. For more information about Cpn as a possible cause of MS visit www.CPn Help.org

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.

Rob, this is Rica (aka katman).
How fortunate for you that you are starting with abx and "cutting to the chase". I will try to do that, too.

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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.

To answer your question, yes, a lot of us are being treated with antibiotics for MS and it works. However, the antibiotic protocol is pretty specific and geared to eradicate the chlamydia pneumoniae bacteria in its three life phases while not interfering too terribly with your ongoing life.

Intravenous antibiotics may result in 'overkill' of the bacteria, resulting in greater inflammation when a huge amount of the little beasties are killed in one fell swoop and (what appears to be) exacerbation of MS symptoms. Not a good idea unless strictly supervised by a doctor well-versed in the protocol and likely effects of IV antibiotics.

Diagnosed 'probable MS' in August 2005, on Wheldon antibiotic protocol since 06 October 2005. Hopping, skipping and jumping just fine, thank you!

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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

I should clarify my above post. When I said 'what appears to be exacerbation of MS symptoms' I meant exactly that. It would 'appear' to someone not well-versed in the protocol to be an exacerbation, when, in fact, it is simply a boatload of inflammation. Inflammation irritates whatever it pushes in its expansion (like nerves and brain matter) and causes symptoms to show their ugly little selves.

Die-off can be just as bad as an MS incident, so you have to limit die-off to what's manageable for you. Low-key, continuous kill is better than a high rate of kill that sets you back for an extended period of time. That's why oral is better than IV antibiotics in most cases.

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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

Again mac you do not have ms or if you do it just hasen't shown it's ugly face yet. When i was diagnosed in 92 if i took antibiotics i could have made the same claim in 94 and said yee ha i found the magic drug because i could run then to, but it's just the nature of the beast.(ms that is)

I have been taking 200 mg of minocycline for only two weeks and already i feel much worse, wasn't sure that was possible. You will say it's the die off and as much as i want to beleive that it's hard so will see. Will try cutting back to 100 mg and see.

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Had ms for over 19 years now.

Robbie, It IS die-off and if you can handle the effects, why not stay on the full dose. It will pass. If the effect is too tough, you could do the 100 and push a lot of water and antioxidants to get the dead bodies out of your system and ramp back up to 200 soon. Congrats on doing this. Whatever you want to call it, if it helps you, you can call your MS the flu, for all I care!

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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

Oh, Robbie, it is die-off, I was much worse for at least the first two weeks, and I was a 7, remember! Although, since I has MS since I was 24, it didn't become that bad until 2001 or so, when I was over 40.

It really is better not to cut back to 100 mg because you will get through this period that much quicker, however if you really can't stand it, do as Mac suggests. Remember again that someone taking an antibiotic who has no susceptible infection doesn't get any reaction.

Very best of luck,

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.

Stick with what you are doing, robbie. I don't see anything else to help us in the near future.

I am currently taking the 100 mg of doxycycline plus 1200 mg of NAC daily and haven't had any problems. I am going to ramp up to 200 mg of doxy this week and see what happens.

One thing I notice on groups discussing the antibiotic protocol is that the people telling their stories haven't had this disease as long as you and I have had it. (Most people weren't even born when I was diagnosed!).

Maybe us old farts just respond differently than the newer diagnosed patients.

Sarah, I am getting concerned that I have not had a reaction to anything yet.

I was put in the hospital Monday for 24 hours because my blood pressure was so high. Now it is back down with treatment. This afternoon I go for an MRI of my brain to find out what is causing the pressure in my head that I have had for at least 5 years.. Then I go back to my internist on Thursday.

When she asked why I was taking doxy, I told her it was for rosacea, which I do have. Just did not want to get into an MS discussion with her.

I am going to wait to get the results of the MRI before upping the doxy because I am not comfortable upping the doxy and adding anything else until someone figures out the head pressure problem.


gwa

No, I don't think we respond 'differently', we've just had the infection growing for so long in our bodies, there' a lot more to kill off than for the people who are newly ill. More die-off, more inflammation and reaction, til the detritus clears out of our systems.

Gotta remember: feeling bad from antibiotics isn't normal, like Sarah said. If you have ANY reaction to abx, it's because it's killing something that shouldn't be inside you, so that's a good thing!

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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

Well, if Robbie was diagnosed in '92, I have had it for longer than him, by about ten years, most of my adult life.

GWA, as an old fart(!), if you have had MS for longer than that and it has all the while progressed slowly, you are likely to find that the changes are more subtle: one day you will realise that the progression has stopped, further on you might realise that you are doing something you haven't been able to do for a while. With me these things happened quickly because although I had had MS for so long, it was fairly benign most of that time until, wham, one day I could hardly walk. It got that bad very quickly due to a reinfection so I managed to stop the progression almost equally fast as that by starting doxycycline.

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.

and robbie CONGRATS
i'm in agony and i only am still only 100 mg doxy
if my arm and 'hug' woul settle down and this sweating thing
how long have you had ms
how long have you been in pain
have you always lived in ontario

Sarah,

1972 was when I was diagnosed. My only problems for years have been leg weakness and balance issues, which have required me to be using a rollator or wheelchair.

Many of the symptoms others deal with have never been a part of my illness. You had mentioned before that the leg weakness was among the last things to be helped, so I may have a lengthy wait for improvements.

gwa

I think it depends what is causing the leg weakness. Mainly it is due to spinal lesions, in which case, it will take longer because there isn't much space to build new pathways. Although most of my lesions were in the brain, I had just enough in the cervical spine to cause a slight weakness enduring even now.

The main thing always is to aim at stopping progression, then to see what you can get back. Some people progress so slowly tht this is difficult to tell in the short term, whereas with me it was obvious.

With balance issues I have found that there are things you can do which will help. Don't laugh at me but one of these things is Egyptian belly dancing, just at the most basic level. Its easy and gentle, but the concentration required to keep your eyes level and focussed on one thing, whilst moving your body does great things for your balance.

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.