How to bring up the possibility of lyme if someone has been diagnosed with demyelinating proteins

I empathize with this dilemma! So many illnesses and afflictions seem like they could be related to Lyme or other opportunistic pathogens like EBV. And honestly I suspect that pathogens are a factor in chronic illness of many types, but the mainstream medical world makes lots of money from suppressing symptoms with drugs and ignoring the fundamental causes. The complete ignorance around the explosion of autoimmune diseases is appalling.

Especially when a kid gets sick, people usually have tried and considered a lot, and usually do not appreciate suggestions. In this case, though, you are a parent of a sick kid speaking as someone who has had to try and consider a great many things, so you have some authority in a way others might not. Plus, your friend knows what you have been going through and is unlikely to hold a caring suggestion against you. Maybe start by sharing that autoimmune illnesses, including demyelinating illnesses, are common in people with untreated Lyme. It's not standard to look into pathogenic causes for the illness your friend's nephew is experiencing, but it's known to arise following a "flu-like" illness. Maybe connecting those dots for them - that some people see improvement in an autoimmune illness when they address underlying pathogens and immune dysfunction - might be helpful in and of itself. Like if someone around me talks about POTS or peripheral neuropathy, then I always bring up how those are very common with Lyme, so I know a lot of people who have them and are seeing improvement with treatment by the appropriate types of practitioners. I agree that unless your friend's family seeks out an LL doctor, then they will be ignored or given a useless test, but I think it's okay for you just to plant the seed and maybe down the road they will aim to treat more holistically and be more open to looking for causes.

I admit that I cringe at the thought of giving this kid chemo to suppress his immune system when they have not identified a cause, but of course I also understand how with the loss of his sight, time is of the essence and they probably want to move as quickly as possible to stop the progression!

There's an article I really like that explains why MDs can't and don't learn about or recommend dietary changes or other lifestyle modifications, and how limiting that is in terms of treating or even reversing MS and other serious, debilitating, degenerative conditions. https://longreads.com/2016/09/14/stat/

Ultimately what happens to this person is not your responsibility, and you cannot make his family look into something, but I think it's worth sharing your experience (a lot of Lyme folks deal with this and similar things) and concerns (what has been done to look for an underlying cause?).

You can tell him my story. I was misdiagnosed with MS. I wasted 7 years seeing 4 different neurologists, had a spinal tap to test for MS (negative, but that's not definitive). They wanted me on IV steroids so many times and I had to argue with the neurologists, mainly because I didn't want to get osteoporosis!

I took oral steroids once and it was a disaster, it didn't even help my nerve pain. They wanted to put me on Gabapentin too to cover up my symptoms, I turned that down. I wasted years having repeat brain and c-spine MRIs waiting for them to see new lesions. Finally I collapsed last March, and wound up in the hospital again -- saw the 4th neurologist (who I saw before). They still had no clue what was going on, but he said "I don't think it's MS anymore because your MRI still has no new lesions."

7 years I wasted. This entire time it was Lyme and Bartonella. It took 3 more doctors before I finally got diagnosed correctly, and it was largely because I figured it out myself.

There is so much intentional disinformation on the web, I mean why does every article about Lyme say "80% of people get a bullseye rash"? - that's horses**t and we know it. I WISH someone had come along and told me "Multiple Sclerosis and Lyme HAVE THE SAME SYMPTOMS." But no one did. The first neurologist tested me for Lyme but it was "negative" -- I had no clue how inaccurate the testing is. (I hope someone out there googles MS and stumbles upon this post)

Also, when I was first tested for Lyme the dr. never asked about my tick exposure... I would have said "Yeah, I had ticks all over me growing up. On Long Island. In the marshes and the forest preserves. In the Hamptons and Montauk. In the woods of upstate NY where we went camping and hiking constantly. And the woods of PA. And in Vermont where I spent a summer. And in the woods of Western MA." HUGE RED FLAG, right? And no one ever asked.

Post Edited (orbitingaround) : 2/22/2020 9:12:16 AM (GMT-7)

Good ideas here for me to have in mind. I will continue to pray about whether to address this with the family but it will not leave my mind. I’m thinking I at least need to plant the seed of possibility.

To clarify, this nephew is in his late 30s. Very outdoors person but always lived in AL. Also works in a manufacturing factory, so I don’t know what kinds of toxins he has been exposed to either.

I would love for him to be able to see his blood under a microscope if it is convincing to Lyme. Heck, I’d love to see my daughter’s blood too! Why in the world do doctors/hospitals not do that if it is obvious??

UAB neurologists are working with Mayo neurologists to try to figure out a diagnosis. Proteins showed up in the spinal fluid but also in the blood, which she said they did not expect and shows that it may be a rare body wide version of MS???? I asked if he had other symptoms and she stated just his vision suddenly disappearing. Last I heard, he would be on continual chemo as treatment to limit further damage. (Those were her words so idk the extent of what that means)

ElizKA26, have you had loss of vision?

No loss of vision, but I have gotten spots and floaters.