3 ms·

You might also want to have her CSF independently tested for nematode worms. (what I mean by this is to put it under a microscope). it surely won't hurt, as som

by alfon 9y ago

You might also want to have her CSF independently tested for nematode worms. (what I mean by this is to put it under a microscope). it surely won't hurt, as some pathologists (although not published yet in the medical literature AFAIK) are finding them in all the samples they have tested for. More information: https://youtu.be/aTPU87CKQLQ?t=6m30s https://youtu.be/aTPU87CKQLQ?t=6m30s If this proves to be the case for your aunt, the good news is that anti-helmintics like Ivermectin, could efficiently treat the underlying cause. You also might benefit from performing Metagenomic tests ( such as Digital Culture by Karius - kariusdx.com) to look for insidious pathogens that might play a role in her illness. In other words, there are many different things that might cause the symptomatology described as "Multiple Sclerosis", Lyme disease actually being one of them, https://youtu.be/Fy0ViOX7xNk?t=9m37s https://youtu.be/Fy0ViOX7xNk?t=9m37s

rocqua 9y ago
I looked into both of those researchers. I could find nothing published by them with regards to MS. They do both seem to have published on Lyme disease. Can you provide any published research to back those youtube videos? Maybe I'm wrong here, but this feels like giving medical advice based on very little hard evidence. Considering I have a loved one with MS, I find such advice sickening. You see this with many terminal diseases. Terminal disease is a fucking terrible thing. It makes people desperate in every sense of the word, it makes them grasp at anything. Flippantly mentioning a few things that 'might help' is basically saying. "Hey, here's a thing that maybe means you won't die / suffer as much from dying". Making such claims lightly is (excuse my language) being a fucking asshole. You are getting someone's hope up, only for that hope, and a little piece of that person with them, to be smashed to pieces when it turns out to be wrong. Moreover, you are telling that person "don't accept your fate, here try this". Acceptance is needed for a healthy way to process terminal disease. 'Advice' like this fucks with that in a big way. Don't overestimate your own chances of being success at the expense of a dying person please. (I know, harsh words. But I needed to get this off my chest)
- jaggederest 9y ago
  I think there's an imprecision problem here with the language. What people might mean by "could help" ranges from "A miracle cure overnight" to "3% improvement in perceived severity of one symptom" I hope that people will avoid the former and view the latter in context - i.e. a genuine wish to relieve their suffering for a while, rather than a flat denial of the reality of the disease. I don't think either is especially appropriate, but the latter is misguided rather than malicious.
- alfon 9y ago
  I, myself, was diagnosed with RR Multiple Sclerosis, with multiple dem. lesions in both brain and spinal cord, ON, delayed evoked potentials, 4 years ago. Completely reversed the condition with long term antibiotics and anti-helmintics, no evidence of MS currently. So my advice might be biased, sorry. As I said, there is no harm in examining this perspective. I didn't advocate for treatment, but for testing.
  - nso 9y ago
    What do you mean by "no evidence of MS"? Brain damage reversed? 4 years with no relapse with RRMS is not unheard of. I did 15 perfect years before I got hit with a big one. I too am symptom free untill I suddenly am not. That's exactly why you and I have the diagnosis RRMS as opposed to one of the other subtypes.
- Mz 9y ago
  Making such claims lightly is (excuse my language) being a fucking asshole. (I know, harsh words. But I needed to get this off my chest) Taking this out on someone with carefully worded suggestions that only advocate testing is also "being a fucking asshole." Because very frequently the people putting out such info are giving testimony from firsthand experience because they know firsthand what a fucking nightmare it is and if they got better, it only seems the decent thing to do to share info that might help some people with the same diagnosis they had. And then they will run into this kind of ugliness ten thousand times, no matter how carefully they word it.
  - 9y ago

by alfon 9y ago

rocqua 9y ago

I looked into both of those researchers. I could find nothing published by them with regards to MS. They do both seem to have published on Lyme disease. Can you provide any published research to back those youtube videos? Maybe I'm wrong here, but this feels like giving medical advice based on very little hard evidence. Considering I have a loved one with MS, I find such advice sickening. You see this with many terminal diseases. Terminal disease is a fucking terrible thing. It makes people desperate in every sense of the word, it makes them grasp at anything. Flippantly mentioning a few things that 'might help' is basically saying. "Hey, here's a thing that maybe means you won't die / suffer as much from dying". Making such claims lightly is (excuse my language) being a fucking asshole. You are getting someone's hope up, only for that hope, and a little piece of that person with them, to be smashed to pieces when it turns out to be wrong. Moreover, you are telling that person "don't accept your fate, here try this". Acceptance is needed for a healthy way to process terminal disease. 'Advice' like this fucks with that in a big way. Don't overestimate your own chances of being success at the expense of a dying person please. (I know, harsh words. But I needed to get this off my chest)

jaggederest 9y ago
I think there's an imprecision problem here with the language. What people might mean by "could help" ranges from "A miracle cure overnight" to "3% improvement in perceived severity of one symptom" I hope that people will avoid the former and view the latter in context - i.e. a genuine wish to relieve their suffering for a while, rather than a flat denial of the reality of the disease. I don't think either is especially appropriate, but the latter is misguided rather than malicious.
alfon 9y ago
I, myself, was diagnosed with RR Multiple Sclerosis, with multiple dem. lesions in both brain and spinal cord, ON, delayed evoked potentials, 4 years ago. Completely reversed the condition with long term antibiotics and anti-helmintics, no evidence of MS currently. So my advice might be biased, sorry. As I said, there is no harm in examining this perspective. I didn't advocate for treatment, but for testing.
- nso 9y ago
  What do you mean by "no evidence of MS"? Brain damage reversed? 4 years with no relapse with RRMS is not unheard of. I did 15 perfect years before I got hit with a big one. I too am symptom free untill I suddenly am not. That's exactly why you and I have the diagnosis RRMS as opposed to one of the other subtypes.
Mz 9y ago
Making such claims lightly is (excuse my language) being a fucking asshole. (I know, harsh words. But I needed to get this off my chest) Taking this out on someone with carefully worded suggestions that only advocate testing is also "being a fucking asshole." Because very frequently the people putting out such info are giving testimony from firsthand experience because they know firsthand what a fucking nightmare it is and if they got better, it only seems the decent thing to do to share info that might help some people with the same diagnosis they had. And then they will run into this kind of ugliness ten thousand times, no matter how carefully they word it.
- 9y ago