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    #31
    "Chlamydia pneumoniae and EBV were the two that were identified that I had really high IgG antibodies for... I'll definitely look in to the Wheldon protocol and I might ask the alternative doctor about it."

    Mathgirl24, I encourage you to discuss it with your alternative doctor!

    There are a ton of articles and studies linking EBV and MS. The Journal of Applied Mathematics published an article online titled, “Epstein Barr Virus – The Cause of Multiple Sclerosis”.

    You could google “Multiple Sclerosis and EBV: Relapsing Together”. Another good one is, “Activation of MSRV-Type Endogenous Retroviruses during Infectious Mononucleosis and Epstein-Barr Virus Latency: The Missing Link with Multiple Sclerosis?”

    The study above says that EBV can activate replication of HERV even when EBV is latent. Other studies show that EBV promotes genomic instability. HERV are imbedded in our genome, HERV are part of our DNA. Just a note… all herpes viruses, of which EBV is one can trigger HERV expression but EBV is particularly effective in activating HERVs.

    HERV are largely strings of proteins. Some believe the replication of HERV can overwhelm mitochondria’s ability to clear these excess proteins and the ensuing cellular dysfunction begins a process leading to the development of MS. Treatment might include diminishing HERV replication with an anti-retroviral and/or improving the function of mitochondria. Both techniques have been effective in treating MS.

    Dr. Terry Wahls, person with MS, gave a TED talk “Minding Your Mitochondria” you may find interesting. She also has a book with that title. Her personal testimony of going from a wheelchair to riding her bike to work by "minding her mitochondria" is compelling.

    There is a ton of information available about Chlamydia Pneumoniae (Cpn), also, and it too, may influence dysregulation or dysfunction of the mitochondria. The Wheldon Protocol addresses Cpn. Dr. Wheldon developed and successfully used his protocol for his wife with MS, Sarah Longlands, a superb artist you can google if you wish. She was thrilled to regain the use of her hands following the protocol her husband developed.

    Mathgirl24, you are wise to be seeing an alternative doctor, IMO. Traditional medicine has spent billions of dollars spanning multiple decades and has not come close to solving MS. But here and there we find rather obscure individuals doing research adding pieces to the puzzle which will one day form an accurate picture of what MS is and how best to treat it.

    Some believe if you vaccinate against EBV then it would not be present to activate HERV and MS would not develop. It could take 50 years to prove if an EBV vaccine would be effective in preventing MS but a large trial would have to be organized first and no one is attempting to organize such a trial. However, we do have Dr. Michael Pender in Australia working on the EBV vaccine angle with a few patients.

    In 2014, Pender removed blood from a patient with MS, treated the blood with an EBV vaccine, re-introduced the blood and achieved very good results in that patient. Please google, “Queensland researchers make major breakthrough in MS treatment” for that story.

    Here and there, the pieces are coming together to identify the cause of MS and ways to treat it and/or prevent it.

    Mathgirl24, as you may know alpha lipoic acid (ALA) improves mitochondrial function and is sold OTC everywhere. I have met with the FDA’s principle investigator for ALA, a consultant to the CDC, Dr. Burt Berkson (he wrote, “The Alpha Lipoic Acid Breakthrough”). He insists that the ALA be European, not Chinese. According to Dr. Berkson’s experience, cheap ALA from China can be impure so secure the best source you can reasonably afford if taking that supplement.

    PS... I bet your doctor knows Dr. Berkson or is familiar with his work. Be sure to ask.

    Best wishes for your health,
    Rolly

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      #32
      Wow interesting, I also have EBV! I've tested positive for active mono twice in my life, once about 12 years ago the other about 8 years ago. The first time was the worst, I was bedridden for a week with a high fever and another two weeks of painful recovery after.

      Today has been a miserable day. I'm getting random attacks of intense nausea that last for an hour or so. The attacks come from nowhere with no warning and go away just the same. Last week I was awoken by one of these attacks in the middle of the night but it went away after 15 minutes.

      I'm also getting "blue orbs" of light at night when I move my eyes to the side while my eyes are shut. Googling this was fun - a lot of UFO stuff comes up haha. I found out these are called Phosphene. Couldn't help but notice this little gem on that wikipedia page for it:

      Less commonly, phosphenes can also be caused by some diseases of the retina and nerves, such as multiple sclerosis.

      So I think i'll chalk this up as another nerve issue for me and mention it to the doctor

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        #33
        "I'm getting random attacks of intense nausea that last for an hour or so. The attacks come from nowhere with no warning and go away just the same."

        Symptom of NMO?

        https://rarediseases.info.nih.gov/di...yelitis-optica

        "Neuromyelitis optica is an autoimmune disease that affects the spinal cord and optic nerves (nerves that carry visual messages to and from the brain). In neuromyelitis optica, the body's immune system mistakenly attacks healthy cells and a substance called myelin in the spinal cord and eyes. Symptoms may begin in childhood or adulthood. Spinal cord involvement results in transverse myelitis, which may cause pain, paralysis and abnormal sensations in the spine and limbs. Bladder and bowel problems may also develop. Symptoms from optic nerve involvement include eye pain and vision loss from optic neuritis. Other symptoms of neuromyelitis optica may include episodes of nausea, vomiting, and hiccups."

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          #34
          Myoak - NMO was a very good suggestion. I called up my primary last week after reading your post and asked for the blood test on it. It's called NMO-IgG.
          The odd thing is I usually get results back within 48 hours tops and it's been over 72, so I called this morning and they said it's in transit to the Mayo Clinic to be tested! Not sure if this is to confirm a positive test or if they can't do the test in-house, they couldn't tell me.

          I also found there are two blood tests for MS which I need to talk to my doctor about: gMSDx and
          IQuity IsolateMS

          I'm getting torn to pieces over the last week. Vision loss in right eye, hearing loss in left ear (and now right ear!) - they are transient, last about 1-2 hours then go away for a few hours and then come back. Loss of balance. Clumsy limbs. Memory loss.

          I was testing out my vision on each eye by covering up one at a time... well when I closed my right eye, I noticed my left eye has a "gray shade" curtain over it - colors look gray/washed out. Back to normal when both eyes are open though. I went back and looked at my MRI to see if I had any evidence of optic neuritis - looks suspicious to my untrained eye, but who knows...

          Somehow everybody looks "familiar" to me - even complete strangers. It is so bizarre.

          I've managed to keep my cool though and not freak out over this stuff, but at the same time I wonder if i'm ignoring what should ordinarily be considered an ER visit. I'm just sick of the doctor appointments and I would hate to be in the ER again just to be told they can't figure it out. Oh well.

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            #35
            The odd thing is I usually get results back within 48 hours tops and it's been over 72, so I called this morning and they said it's in transit to the Mayo Clinic to be tested! Not sure if this is to confirm a positive test or if they can't do the test in-house, they couldn't tell me.
            This is normal and does not indicate results. The Mayo Clinic developed the blood test for NMO. A positive means the person has NMO a negative result doesn't rule out NMO.

            Diagnostic criteria for NMO:
            https://myelitis.org/international-c...rum-disorders/

            I also found there are two blood tests for MS which I need to talk to my doctor about: gMSDx and IQuity IsolateMS
            At this time there is no blood test to diagnose Multiple Sclerosis.
            https://www.msworld.org/forum/showth...-test-gMS(R)Dx

            This disease is diagnosed based on the McDonald Criteria and not a blood test. Quite a few people have paid for expensive blood work that claims to give evidence of MS, there is no such blood test at this time.
            Diagnosed 1984
            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

            Comment


              #36
              Snoopy, if you're going to make those kind of statements then you need to provide evidence from a reliable source. I'm sorry but an old post from 2013 in which you responded to is not a reliable source.

              Comment


                #37
                Originally posted by stevemills View Post
                Snoopy, if you're going to make those kind of statements then you need to provide evidence from a reliable source. I'm sorry but an old post from 2013 in which you responded to is not a reliable source.
                The National Multiple Sclerosis Society as well as the McDonald Criteria does not recognize any blood test, at this time, as diagnostic for MS. This is a well know fact about this disease.

                https://www.nationalmssociety.org/Sy...agnosing-Tools
                Blood tests:
                While there is no definitive blood test for MS, blood tests can rule out other conditions that cause symptoms similar to those of MS, including lupus erythematosis, Sjogrens, vitamin and mineral deficiencies, some infections, and rare hereditary diseases.
                Diagnosed 1984
                “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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                  #38
                  This has prompted me to do some searching and here's what I found from Multiple Sclerosis News Today:

                  Molecular diagnostics startup IQuity is introducing a pioneering blood test that speeds up multiple sclerosis (MS) diagnosis to just seven days. Previously, this process could take up to months or years.

                  IQuity, based in Nashville, Tennessee, began working on its new IsolateMS blood test in January 2016, after receiving $2 million in seed funding from the National Institutes of Health. The test, to be released this May, has a reported accuracy of 90 percent.

                  Current testing methods such as magnetic resonance imaging scans take much longer to reach a diagnosis because they rely on measuring the progress of irreversible neurological damage. By contrast, doctors can administer IsolateMS as soon as symptoms appear, before the disease has inflicted any significant damage.

                  “The 90 percent accuracy rate of IsolateMS should give providers and patients a great deal of confidence in their results,” IQuity CEO Chase Spurlock told Multiple Sclerosis News Today. “This test augments existing clinical practice and eliminates the period of uncertainty that can accompany an MS diagnosis. IsolateMS allows patients and providers to begin discussing next steps immediately.”

                  https://multiplesclerosisnewstoday.c...ple-sclerosis/ to read more on this.
                  1st sx '89 Dx '99 w/RRMS - SP since 2010
                  Administrator Message Boards/Moderator

                  Comment


                    #39
                    I guess what Snoopy is trying to say is not to substitute the MacDonald criteria for a diagnosis with these blood tests.
                    That makes sense.

                    These blood tests may not be covered by insurance, but I think it's worth discussing with my neuro or PCP. The more data points we have, the better in my opinion.

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                      #40
                      "These blood tests may not be covered by insurance, but I think it's worth discussing with my neuro or PCP. The more data points we have, the better in my opinion."[/QUOTE]


                      Steve, what I think you should do right now, today, is call where you have the appointment with the MS specialist and plead your case for an earlier appointment. Do not let them off the hook until they advance your appointment!!!!! If you are resolute they will finally, grudgingly relent and arrange something sooner. They can do it and they will do it if you plead your case with passion, humility, and urgency. I have done this and seen this done repeatedly.

                      You are certainly correct the more data points the better... your blood results from Mayo may be extremely helpful.

                      Know that I am praying for you, as are others reading your posts. Praying is a way of sensing your need and sharing your fears so you are not overwhelmed in this situation. Resolution is a process best carried on with a calm mind and a peaceful heart. Keep your head on right and you will come through this the best way possible.

                      Steve, hang in there because these symptoms will subside. No, I'm not a psychic, I make that prediction based on past observations of severe neurological flare-ups and remissions in my family and others. This will subside.

                      Often when someone presents with the symptoms you describe they are given Intravenous Solumedrol, or IVSM. And, likely, a pulse of IV steroids would help a great deal. If you can't accelerate your appointment with the MS specialist then a trip to the ER possibly resulting in IVSM is worth considering, IMO.

                      Comment


                        #41
                        Thanks Myoak, I appreciate the support. I've called numerous times begging for an earlier appointment. They have put me on "high priority" for the cancellations list, so that does help a little but that's as far as I can get. Truthfully, I do understand their point of view - there are people in far more severe conditions than mine and rightfully so they should get priority over my case.

                        NMO-IgG test came back today and it's negative! Hooray! That's a bit relieving since the prognosis for NMO is poor.

                        I was very close to going to the ER yesterday, but I decided to sleep it over and thankfully things have calmed down this morning. Let's see how the day goes...

                        The vision problems all became worse yesterday after I got out of the shower - everything was hazy/smokey. This progressed to blurred vision in my right eye, with wavy vision (think heat waves on a long road in the summer), and pain in my right eyeball when I looked to the side or down.
                        Phosphenes and flashing came back at night. The pain is not as bad today, but still there when I look around and my vision has not returned to normal.
                        I'm not sure if this is optic neuritis or ocular migraines? Note - I do NOT have a headache, rarely do.

                        I've created some pictures of my vision:
                        - This is my vision today if I cover one eye up at a time. Notice the washed out colors on the left and distortion on the right.
                        - These are the phosphenes I see at night when I close my eyes or blink my eyes
                        - Here is my vision when I come indoors on a sunny day. Does this happen to anyone else? I've asked one person and they said no.

                        Comment


                          #42
                          [I]NMO-IgG test came back today and it's negative! Hooray! That's a bit relieving since the prognosis for NMO is poor.

                          It is great news that the prognosis for NMO is poor!

                          I notice that the OHSU Casey Eye Institute: Neuro-Ophthalmology, South Waterfront is in Portland, OR. I would consider making an appointment there if I were trying to diagnosis something similar, Steve. A neuro-ophthalmologist can only be helpful. I would prefer such a highly qualified eye specialist, if possible. You likely would need a referral if interested.

                          Comment


                            #43
                            The coming inside from a sunny day thing happens to me as long as I can remember. I personally wouldn't consider that one abnormal.

                            Comment


                              #44
                              I have an upcoming appt in a few weeks with a new neurologist. This neuro is relatively young, inexperienced, and has a reputation for "looking things up online" according to reviews. I'm hoping that means they'll be more receptive to my research efforts, but I won't get my hopes up.

                              My oscillopsia is getting really bad but my blurred vision has stabilized. I was able to see another ophthalmologist who confirmed I have a nystagmus and thinks the optic chiasm might be damaged. He could not "see" any optic nerve damage using his lens, but noted that doesn't mean it's not there. I have an appt with a neuro ophthalmologist in a couple of months.

                              My psychologist - who is a PhD and familiar with neurological conditions - wonders why MS has not been suspected for me. I explained my MRI results and he said ruling out MS based on a clean MRI is stupid and they need to do a lumbar puncture and VEP. I couldn't agree more! Now if I could only get a neurologist to listen.

                              I've been having brief episodes where I feel like crying but it comes out as laughter and it happens very randomly for a 10 seconds tops then I feel fine. I asked my psychologist if this means I'm depressed or developing some kind of bipolar disorder, he says he is confident this is actually a neurological problem! I looked it up, and he's right. It's called the Pseudobulbar Affect.

                              I thought of some more stuff that's really interesting.
                              In my late teens/early 20s, I had alopecia areata. It was a giant bald smooth spot in the back of my head which was resolved with a steroid injection. Alopecia areata is an autoimmune condition caused by T cells attacking the hair follicles. As you may know, misbehaving T Cells are also responsible for demyelinating nerves and a whole host of other autoimmune disorders.

                              Starting from my mid 20s, I've also been a victim of chronic prostatitis of idiopathic cause. Further reading suggests this to be an autoimmune issue as well.
                              So if there's one thing I'm certain of, it's that I have been a victim of various autoimmune attacks for some time.

                              I've been able to map out all my symptoms and correlate them to a region of the brain. 90% are in the brainstem with half of that being centered in the Pons of the brainstem. The other two are temporal lobe and pre-frontal cortex. This is very interesting because it actually shows a very clear trajectory of this disease neurologically AND maps to the vascular pathway with specific arteries to confirm that. It looks like this:


                              Current Neurological Disease Path:
                              - Spinal cord (possibly?) > Brainstem > Temporal Lobe > Pre-Frontal Cortex
                              Current Vascular Path:
                              - Vertebral Artery > Basilar Artery > Circle of Willis > Posterior Communicating Artery > Anterior Communicating Artery > Anterior Cerebral Artery

                              As some of you may know, autoimmune disorders of the brain work by finding a weakness in the blood-brain barrier and invoking the help of T-Cells to infiltrate what they deem as "foreign" (e.g. myelin sheath). So to have mapped out where my symptoms are coming from, I can visually speculate where the damage started and the trajectory it's taking which should be helpful in finding a proper diagnosis and hopefully convincing the neuros i'm not just making this crap up!

                              Comment


                                #45
                                Just curious, what source have you used to map symptoms to the brain?

                                I have always been told that symptoms can be mapped to the brain stem and spinal cord, but brain mapping is not as clean, partly due to how much is unknown and also the property of neuroplasticity. There are some symptons that can be mapped to the brain, such as PBA or vision, but many can't.

                                I know they are learning more and more about brain function via functional MRIs. If you could share your source, greatly appreciated.

                                I hope you are able to make progress with your new neuro.
                                Kathy
                                DX 01/06, currently on Tysabri

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