Multiple Causes / Comprehensive Treatment: Opinion
Posted: Fri Oct 06, 2006 4:19 pm
I'll state my bias up front: I'm in my own "camp," and I think the rest of you are either wrong or only partially correct if you don't share my views on the causes and treatments of MS. That's not to say that my camp is separated from other camps, but rather, that my camp overlaps and encompasses other camps. I don't think there is a single cause of MS although I do think there is trigger. I have very little patience with discussions about what THE cause of MS might be. I especially have no patience for the autoimmune view of MS or treatments that tinker with the immune system...been there, done that (Rebif for a year). Autoimmunity and the reasons given for taking CRABS rate right up there with believing in "The Emperor's New Clothes."
Okay, now that I've told you my somewhat less than humble opinion, I'll tell you that I'm actually a pleasant person who has been compelled to make a pastime of investigating possible MS causes and treatments. I love my husband who has SPMS and has been too brain foggy and trusting in his unhelpful former neurologist to do it himself. It has only been his treatment experiences and my own observations that formed my opinions. I was unbiased when I started investigating, but now I've stepped back and "looked at the forest instead of the trees."
You others who have done this type of broad investigating will understand what I mean when I say that there is evidence of involvement of many factors in MS. Just to name some, there are: viral, bacterial, fungal, and other microbial infections; vitamin D deficiency; elevated concentrations of heavy metals/toxins; gut problems like leaky gut, food sensitivities, dysbiosis, malabsorption; genetic predisposition; hormone imbalances; sleep and IGF-1 deficiency; glutathione depletion; etc. The more you look and read, the more you learn about the interrelationships between these factors and how they can screw up immune function. You learn that, historically, folks with MS have been treated for this and that suspected cause, but in the end, nothing has panned out to be THE cause and no single treatment has proven to be universally and ultimately effective. Does that mean they were wrong? Not necessarily...they were just single pieces of a jigsaw puzzle. Incidentally, I think there are probably factors F, K, Q, W, X, Y, and Z that are still not even suspected by anyone. This worries me.
My view of MS is that it is neurological inflammation that can be caused by a number of different factors, but most probably a combination of different factors. This is not my own original idea---it comes from my husband's new neurologist who had the guts to say "There is no such disease as MS...it's inflammation, and we can get rid of it." This bold view meshed very nicely with what I had already come to believe about MS. I am so relieved to have found a doctor who is now treating my husband's SPMS comprehensively.
Oh yes...the trigger issue. The new neuro suspects that the trigger is viral, whereas Dr. Wheldon sees viruses as "henchmen." As every case of MS is so unique, they could both be right...or they could both be wrong. That answer will emerge some day, but in the meantime, the more critical issue is to acknowledge that the viruses are probably present in any given individual MS scenario and to treat the individual accordingly for viral infections. Incidentally, my husband tested positive for titers of CMV and EBV. If he had been tested for other viruses...well, there's no telling what he would have tested positive for. He' on a 6 month course of valtrex and amantadine.
And what about antibiotics? The effects on my husband of incidental antibiotics and starting N-acetyl cysteine were clearly indicative of bacterial involvement before actually starting the Wheldon combined antibiotic protocol within the new neuro's protocol. By the way, he was positive for mycoplasma pneumoniae, but negative for chlamydia pneumoniae on titer testing. Do I think he has Cpn? Yes, but there is no reason to press for more reliable testing now that he is on the protocol. Our insurance company is not going to pay for a test to prove me right. In any case, even if he doesn't have Cpn, the Wheldon protocol is effective for treating mycoplasma, and I see this as the most critical part of his overall treatment. There is no reason to think my husband is the only MSer with bacterial involvement in the disease process---visit CPn Help.org to find plenty of others with the same problem. The difference between them and the autoimmune camp is that they have tested positive for Cpn or Mpn or have had illness/treatment experiences that indicate bacterial involvement. By the way, there are very notable and open discussions of viral co-infections in that camp. Also, the prepared text on that site and Dr. Wheldon's is very clear in its presentation of chronic chlamydia pneumoniae infection as a factor amongst other factors involved in MS. I would say that my exposure to the prepared material and postings on CPn Help.org and Dr. Wheldon's site material have served to broaden my investigational path as opposed to constricting it.
Heavy metals? Yep, he's got'em, and he's taking chelation therapy too. We are also buying RO-filtered water, brushing our teeth with fluoride-free toothpaste, and using aluminum-free deodorant. The aluminum pots, pans, and kettle have left the building.
Gut problems? Oh yeah...the new doc gave him a 7-day course of diflucan at the start of the protocol. Thank goodness the oregano oil he was on had already killed off so much. The die-off reaction to that was so bad we had to take a break from it. The diflucan die-off reaction would have been much worse than it was if not for the prior fungal kill-off. Now that he is on chelation, his doc has advised to add caprylic acid to his supplements as this is an additional factor of vulnerability to fungal overgrowth. The need for good and frequent probiotics and anti-fungal supplements while on the antibiotics was already understood and discusssed with this doc. The chronic constipation is being helped very nicely by pure cellulose powder, a terrific source for insoluble fiber (and that's the right type of fiber to supplement for this scenario).
This gut problem deserves separate mention. He has a strong sensitivity to gluten. It's tough to avoid gluten, but it becomes easier when there's been a clear and memorable demonstration of the result of eating it. The new doc has him avoiding dairy also (casein sensitivity), but says these can both be added back into his diet eventually in small quantities. For gut healing, he is taking gamma oryzanol and IGg 2000 DF by Xymogen as well as the added gut-healing benefit of the cellulose powder.
Poor sleep patterns? Yep, and he's on Lunesta for that.
And yes, he's taking lots of vitamin D and other supplements mostly per Dr. Wheldon's site recommendations but some per sources found through my own broader investigations. All these have been approved by the new doc who is familiar with all of them and understands their purpose.
Sounds like a big batch of pills. Oh yeah...suitable for a big illness. That's not to say the idea is to throw a bunch of pills at it---every one of them has a good reason behind it. Multiple factors---multiple treatments.
That's my husband's MS profile, and it is uniquely his. Is it unusual though? In the world of MS, I don't thnk so.
By the way, he's improving. I have strong opinions on improvement too, but this blog is already too long.
Cypriane~MS caregiver and advocate in Dallas
Okay, now that I've told you my somewhat less than humble opinion, I'll tell you that I'm actually a pleasant person who has been compelled to make a pastime of investigating possible MS causes and treatments. I love my husband who has SPMS and has been too brain foggy and trusting in his unhelpful former neurologist to do it himself. It has only been his treatment experiences and my own observations that formed my opinions. I was unbiased when I started investigating, but now I've stepped back and "looked at the forest instead of the trees."
You others who have done this type of broad investigating will understand what I mean when I say that there is evidence of involvement of many factors in MS. Just to name some, there are: viral, bacterial, fungal, and other microbial infections; vitamin D deficiency; elevated concentrations of heavy metals/toxins; gut problems like leaky gut, food sensitivities, dysbiosis, malabsorption; genetic predisposition; hormone imbalances; sleep and IGF-1 deficiency; glutathione depletion; etc. The more you look and read, the more you learn about the interrelationships between these factors and how they can screw up immune function. You learn that, historically, folks with MS have been treated for this and that suspected cause, but in the end, nothing has panned out to be THE cause and no single treatment has proven to be universally and ultimately effective. Does that mean they were wrong? Not necessarily...they were just single pieces of a jigsaw puzzle. Incidentally, I think there are probably factors F, K, Q, W, X, Y, and Z that are still not even suspected by anyone. This worries me.
My view of MS is that it is neurological inflammation that can be caused by a number of different factors, but most probably a combination of different factors. This is not my own original idea---it comes from my husband's new neurologist who had the guts to say "There is no such disease as MS...it's inflammation, and we can get rid of it." This bold view meshed very nicely with what I had already come to believe about MS. I am so relieved to have found a doctor who is now treating my husband's SPMS comprehensively.
Oh yes...the trigger issue. The new neuro suspects that the trigger is viral, whereas Dr. Wheldon sees viruses as "henchmen." As every case of MS is so unique, they could both be right...or they could both be wrong. That answer will emerge some day, but in the meantime, the more critical issue is to acknowledge that the viruses are probably present in any given individual MS scenario and to treat the individual accordingly for viral infections. Incidentally, my husband tested positive for titers of CMV and EBV. If he had been tested for other viruses...well, there's no telling what he would have tested positive for. He' on a 6 month course of valtrex and amantadine.
And what about antibiotics? The effects on my husband of incidental antibiotics and starting N-acetyl cysteine were clearly indicative of bacterial involvement before actually starting the Wheldon combined antibiotic protocol within the new neuro's protocol. By the way, he was positive for mycoplasma pneumoniae, but negative for chlamydia pneumoniae on titer testing. Do I think he has Cpn? Yes, but there is no reason to press for more reliable testing now that he is on the protocol. Our insurance company is not going to pay for a test to prove me right. In any case, even if he doesn't have Cpn, the Wheldon protocol is effective for treating mycoplasma, and I see this as the most critical part of his overall treatment. There is no reason to think my husband is the only MSer with bacterial involvement in the disease process---visit CPn Help.org to find plenty of others with the same problem. The difference between them and the autoimmune camp is that they have tested positive for Cpn or Mpn or have had illness/treatment experiences that indicate bacterial involvement. By the way, there are very notable and open discussions of viral co-infections in that camp. Also, the prepared text on that site and Dr. Wheldon's is very clear in its presentation of chronic chlamydia pneumoniae infection as a factor amongst other factors involved in MS. I would say that my exposure to the prepared material and postings on CPn Help.org and Dr. Wheldon's site material have served to broaden my investigational path as opposed to constricting it.
Heavy metals? Yep, he's got'em, and he's taking chelation therapy too. We are also buying RO-filtered water, brushing our teeth with fluoride-free toothpaste, and using aluminum-free deodorant. The aluminum pots, pans, and kettle have left the building.
Gut problems? Oh yeah...the new doc gave him a 7-day course of diflucan at the start of the protocol. Thank goodness the oregano oil he was on had already killed off so much. The die-off reaction to that was so bad we had to take a break from it. The diflucan die-off reaction would have been much worse than it was if not for the prior fungal kill-off. Now that he is on chelation, his doc has advised to add caprylic acid to his supplements as this is an additional factor of vulnerability to fungal overgrowth. The need for good and frequent probiotics and anti-fungal supplements while on the antibiotics was already understood and discusssed with this doc. The chronic constipation is being helped very nicely by pure cellulose powder, a terrific source for insoluble fiber (and that's the right type of fiber to supplement for this scenario).
This gut problem deserves separate mention. He has a strong sensitivity to gluten. It's tough to avoid gluten, but it becomes easier when there's been a clear and memorable demonstration of the result of eating it. The new doc has him avoiding dairy also (casein sensitivity), but says these can both be added back into his diet eventually in small quantities. For gut healing, he is taking gamma oryzanol and IGg 2000 DF by Xymogen as well as the added gut-healing benefit of the cellulose powder.
Poor sleep patterns? Yep, and he's on Lunesta for that.
And yes, he's taking lots of vitamin D and other supplements mostly per Dr. Wheldon's site recommendations but some per sources found through my own broader investigations. All these have been approved by the new doc who is familiar with all of them and understands their purpose.
Sounds like a big batch of pills. Oh yeah...suitable for a big illness. That's not to say the idea is to throw a bunch of pills at it---every one of them has a good reason behind it. Multiple factors---multiple treatments.
That's my husband's MS profile, and it is uniquely his. Is it unusual though? In the world of MS, I don't thnk so.
By the way, he's improving. I have strong opinions on improvement too, but this blog is already too long.
Cypriane~MS caregiver and advocate in Dallas