This Is MS Multiple Sclerosis Knowledge & Support Community

Hello everyone, I've been a user on thisisms.com for several months but not an active blogger. Now I have something to blog about. After months of trying to find a doctor to effectively treat my husband's SPMS, he is finally receiving the right kind of medical care. The treatment is a comprehensive protocol that addresses bacterial, viral, and fungal infections as well as elevated toxic heavy metals, gut dysbiosis/food allergies, and poor sleep/depleted growth hormone issues.

Thankfully, this doctor was already familiar with the Wheldon and Vanderbilt protocols for treatment of chronic Chlamydia pneumoniae. He has incorporated the Wheldon combined antibiotic protocol into his own protocol. Thank God for that. After wasting a year on Rebif followed by an extensive search for a truly effective treatment, we became convinced that comprehensive treatment was needed and that the Wheldon protocol would be the most critical element of that treatment.

My husband started doxycycline at the half-dose of 100mg/day on August 21, 2006. He experienced a cycle of bacterial die-off reactions followed by relative improvement. After two weeks, the dose was increased to 100mg @ 2X/day. Again, he repeated the same cycle, only the relative improvement was even better.

What is the relative improvement?: Less fatigue, much less brain fog, restless legs and feet calming down, less eye fatigue/improved vision, slightly better balance, slurred speech gone.

At the end of this week, he will add Azithromycin to the mix. We expect a new cycle of bacterial die-off reactions followed by improvement. His die-off reactions include fluctuating temperature, increased fatigue and exacerbations of his other MS symptoms, and sometimes feeling crummy and achey. It sounds bad, but the good news is that these die-off symptoms are easily managed with activated charcoal and other strategies shared with us by other users on CPn Help.org. Besides, these cycles are temporary and so much better than the alternative: disease progression. Easily a bargain.

We are committed to this for the long haul which we expect to be a year at the least, but more probably two years or more. Thanks to thisisms, we found a full complement of possible treatments, but more importantly, it led us to information on the Wheldon combined antibiotic protocol.

Cypriane in Dallas

Hi Cypriane,

Well, nobody can now say that the Antibiotics forum doesn't seem to have been very active of late. I don't know that less fatigue was one of the first improvements for me, but slurred speech certainly was, and very quickly. Everyone I talked to on the phone who knew my diagnosis remarked upon it. Everyone else just probably thought I was an alcoholic who managed to kick the habit, but politely didn't mention it. My feet didn't calm down either, for ages, so all in all, I would say that Steve is doing remarkably well. You must feel incredibly relieved after all those months of trying to find someone to treat you and I am sure there are many people here who will be looking forward to the next instalment.

Sarah

Hi Cypriane,
So glad to hear your husband is on his way - less fatigue is huge when you are battling MS. My speech has improved as well as 2 or 3 people have made comments to me on the phone as of late! I saw my girlfriends mom last week and she said "I look better than I did last year". I have been on the Wheldon protocol for about 5 months and making small improvements monthly.

When I added Azithromycin I did not have any major die off until I was on it for about 5 weeks and than saw more improvements - everyone is different as some will have reactions right away.

Best of Luck and Welcome - Keep us posted about your husbands progress!

Hi Sarah and Wiggy, I'm glad to be posting here, but I feel a little like a brand new ugly stepchild on this site. The word "potential" to describe antibiotic treatment in the "Antibiotics" heading is a little off-putting. Isn't it understood that it is a treatment that is actually being used? And why is it so far down on the forum list when it starts with "A?" Oh well, we have to trust that eventually people who have been told there is no hope can actually comprehend the reality of hope when they see it. For now, it looks like the mob is content to be tinkered with. Cypriane

Cypriane don't worry about the word 'potential', or the fact that Antibiotics is so low down. Everything is put in sequence of being added to the site, Campath is even further below and that is an accepted treatment, having been developed solely by neurologists. My neurologist is one of the Cambridge Campath crowd, which is probably why he can't bring himself to look at my repeat scans, although I suspect his excuse might be that he didn't order them, so why should he. Adolescent behaviour to my mind. I think, to get a more mature response, I might eventually ask my GP to refer me to Gavin Giovannoni in London, which is only a few miles away, just in a different health district, but on the other hand, I don't really need a neurologist.

Sarah

Oops, done it again!

Cypriane,

The word "potential" to describe antibiotic treatment in the "Antibiotics" heading is a little off-putting. Isn't it understood that it is a treatment that is actually being used?

Antibiotics treatment is described as a potential treatment because it has not been formally trialled for either safety or effectiveness. We do not know how many MS sufferers are following the antibiotics protocol. Some have reported impressive results, but others who have been on the protocol for some time have not experienced the same results. Until antibiotics is formally trialled, it can only be described as a potential treatment.

There are two other flies in the ointment. Firstly, CPn has not yet been proved to be the cause of MS. It may be that it is the cause in a sub-set of MS patients, which means that for patients with MS not caused by Cpn, they are taking antibiotics which will have no effect. Secondly, antibiotics such as minocycline and doxycycline do have an effect on the immune system and may have some neuro-protective benefits. So the benefit they might have may not have anything to do with Cpn.

Ian

Cypriane, he's all yours, to deal with as you see fit.

Until antibiotics is formally trialled.............

Antibiotics are plural.

Sarah

Cypriane,

Anecdote wrote

Cypriane, he's all yours....

Not sure what Anecdote means by this. I was merely trying to explain why antibiotics treatment is described as a potential treatment on this website.

I hope your husband continues to do well on this treatment.

Ian

Hi Cypriane,

Finally, you have begun.

Your husband's experience sounds much like my husband's. He felt just generally better after starting the doxy and less fatigue was his greatest improvement. After 2 weeks on the full dose of doxy he started the azithromycin. This is when things got interesting. He really had a strong herxheimer reaction and it took awhile to ratchet up to the full dose of the zith.

As far as the "potential" of this treatment, what has astounded me has been finding out how many more doctors have been willing to begin this treatment with MS patients. It really isn't as "out there" as some think. This is certainly not to say there is a paradigm shift going on in medical thinking, but there is a recognition by some pysicians that treating MS patients with an abx protocol can show amazing results and that the science behind this treatment is sound.

Good luck,
Lexy

Thanks to all for the responses. Sorry for the late followup...I've had distractions.

Ian, I see your name sprinkled around on the site quite a bit, so I assume you have read my other posts. Just as a refresher on my "MS philosophy," I think one of the things that has made MS such an elusive illness in terms of causes and treatments is that researchers, physicians, and the afflicted predominantly focus on singulars. I see MS as multifactorial in its causes, though I do subscribe to the trigger idea. But even in the trigger idea I see the possibility for variety. What happens after the trigger point only makes individual MS "profiles" even more divergent in terms of accumulated other causes and contributing factors. Let me explain with a sample scenario. This is only a sample of any number of possible scenarios, oversimplified, and not meant to present any medical theory:

initial viral, bacterial, or fungal infection that never really quite goes away leading to
> glutathione depletion leading to
> susceptibility to other infections which then cause
> further glutathione depletion which allows
> accumulation of various chronic infections which causes
> further glutathione depletion which allows
> elevated concentrations of heavy metals and other toxins, imbalanced immune function, poor sleep (dearth of reparative sleep) which allows for lack of repair of gut > leaky gut / gluten and/or casein and/or other excitotoxin intolerances > causing
> CNS inflammation > BBB lets in infected white blood cells to help the home guard (by now th BBB's integrity may also have been affected by all the above) causing
> more CNS inflammation which
> sends the immune system into overdrive causing
> horrendous "collateral damage." Since all the contributing factors are still there, and the immune system is increasingly out of balance, the CNS damage only gets worse. The inflammation just gets worse and worse. This adds up to
> MS which is universally accepted as a chronic inflammatory disease.

Everyones's MS is different, but it's all inflammatory. Also, it should be obvious that I see glutathione depletion as a key player in developing a scenario of MS. Another thing to take a new look at is this: historically, several different treatments have enjoyed some limited success that never proved to be either lastiing or univeral in effectiveness (gluten/casein free diet, other allergy treatments, avoiding excitotoxins, chelation, antifungals, etc.) Does that mean these treatments should be discarded as worthless? I say no. I think they are only individual elements addressing separate MS factors. Add to those older experimental treatments the newer ones that are enjoying some treatment success: antibiotics and antivirals, glutathione support, IGF-1 support, antioxidant support, immunoglobulin support. Assuming that my multifactorial philosophy holds water (and I firmly believe that it does), by the time a person manifests what we know as MS, as many accumulated and contributing factors as possible need to be addressed. That's why comprehensive treatment is the direction I chose for my husband who was too fogged up to choose for himself.

Looking for "the" cause and "the" treatment is just not logical. The collective body of what is actually known and not just theorized about MS just doesn't point to the singular, and for MS research and treatment to continue in that direction equates with stampeding off a cliff because that's the direction everyone's been heading before now despite the obvious result. The narrow mindset of singularity needs to be tossed.

If all that weren't enough, I reject the established process of treatment transition. I've run out of time and energy for this, so please see my posts for today in the general discussion "everyone needs to read this..." thread. Those posts and my "Multiple Causes / Comprehensive Treatment" thread pretty well covers the rest of my philosophy on MS. Beyond that, my additional opinions related to CAP treatment for chronic Cpn infection are covered in my "Advantages..." and in the "5 HTP..." threads in the Antibiotics forum. Incidentally, I don't think that all the multiple factors I entertained above are universal to all MSers, and I certainly didn't include all the possible viable factors.

Cypriane~caregiver and advocate for husband with SPMS who is improving beautifully on his comprehensive treatment

mormiles wrote:... The treatment is a comprehensive protocol that addresses bacterial, viral, and fungal infections as well as ...

What are you doing to address the viral angle?

Hi COB, A 6-month course of valtrex and amantadine. I understand that amantadine, in some way that I'm not clear on, is also helpful to MSers in the area of motion or movement.

Cypriane~caregiver and advocate in Dallas for husband with SPMS

Cypriane, I think I would prefer l acetyl-cysteine to amantidine after reading this:

http://www.mult-sclerosis.org/Amantadine.html

Amantadine is used to alleviate the symptoms of fatigue in multiple sclerosis. It is an antiviral medication which improves muscle control and reduces muscle stiffness. It is sold under the brand names Symadine and Symmetrel.
How and why Amantadine works to combat fatigue is unknown. As with many drugs, the effectiveness of Amantadine in dealing with MS fatigue was a chance discovery that came about when a number of people with MS were being treated for 'flu using its anti-viral properties. The anti-viral properties may confer other benefits because viral infections have been shown to be significantly correlated with relapses.

Amantadine is also used for patients with Parkinson's disease due to its efficacy in treating muscle stiffness and loss of muscle control - both of which are potential symptoms of MS.

Compartive studies between Amantadine and Pemoline (Cylert) have shown Amantadine to be more effective in treating MS fatigue. Other studies between L-Carnitine, essentially a herbal product, and Amantadine in treating fatigue in Chronic Fatigue Syndrome (CFS) have shown L-Carnitine to be the more effective (Neuropsychobiology, 35:16-23).

Amantadine is generally well tolerated by people with MS but it can cause insomnia, nausea and dizziness. The insomnia can be best dealt with by taking the drug in the morning and midday. Other common side-effects include loss of concentration, dizziness, headaches, irritability; loss of appetite, nervousness, blotchy rashes especially in the sunlight, constipation, dryness of the mouth and vomiting.

More rarely Amantadine can cause blurred vision, confusion, urinary hesitation, fainting, hallucinations, convulsions, coordination problems, optical irritation and swelling, depression, swollen feet and shortness of breath.

Of course, I'm not thinking about the anti-viral aspect here: I never do.

Sarah

the reason i asked was because i am in the process of trying to be prescribed amantadine. I originally was interested on the basis as it combats fatigue, but i then found out it was originally used as an antiviral. This interested me as my only known cause of a relapse was a cold or flu.

http://www.nationalmssociety.org/Meds-Amantadine.asp

The only problem is that i just saw my neuro, and he says there had been studies which found it to be ineffective for MS fatigue, and we had too much to discuss for me to harp on it. If it helped fatigue, that would be a bonus.