I was one of the first members of LymeNet, but many e-mail addresses and passwords (forgotten) I am back.
Question: Who out there is a paraplegic?
I'm seeing a neurologist who says she doesn't know any Lyme victim who is crippled to the extent I am. I can't walk or stand AT ALL.
Anyone?
Posted by Keebler (Member # 12673) on :
- G'day, Mate !
Sorry to hear of your situation. I do think there may be a chance of reversal, depending on variables / treatment. As you go way back, though, you likely are well read on this.
Yes, though, I have heard of some being paralyzed - and also recovering with treatment that addresses lyme and coinfections.
Coinfections are a huge piece of the puzzle here, too.
I know one person with confirmed lyme, no treatment options in her state (or with her budget) and she became paralyzed and then they say it's "MS"
I want to offer you encouragement that things might be able to change.
Have you gone through a treatment program with an ILADS educated LLMD? And have coinfections been considered?
Has / can this neurologist assess you for any other infections known to contribute to paralysis? That much, at least, should be helpful though brace for a less than enthusiast answer.
I assume they have done non-invasive image testing on your brain and spine ?? Still, if any lesions appear, that can be caused by lyme.
As you likely know if you were here a long time ago, there are very few neurologists who know about lyme. Yours clearly does not. You need to seek out one who does as, even if other things are involved, they MUST also know about how lyme can impact.
Have you connected with your area lyme support groups for various doctor options? -
Posted by Keebler (Member # 12673) on :
- Side note: gluten can damage nerves, too. If you are not now gluten free, you might benefit in various ways by dropping all gluten.
Lyme & TBD still needs to have a true expert, though, who will consider all the variables with and outside of TBD (tick borne disease).
Some viruses can also cause paralysis. A good LLMD will consider those, too. For treatment, though, a good ILADS educated LL ND (naturopathic doctor) might also offer additional avenues of treatment for viruses. -
Posted by Keebler (Member # 12673) on :
Topic: Doctor with MS recovers: shares nutrients & pivotal diet
Minocycline and some other Rx were part of her healing journey, too, though not noted in book or video.
Still, the nutrition plan laid out here for mitochondria support is worthy of serious consideration -- along with assertive & direct attention to any stealth infection with a LLMD
Focus: "Minding My Mitochondria" by Terry Wahls, MD
"TED Talks" Video and book links.
MYELIN SHEATH & MITOCHONDRIA SUPPORT discussed. -
Posted by Moons (Member # 48609) on :
Thanks for your advice, Keebler.
Igenex confirmed Lyme but no co-infections.
Recent MRIs and CT scans don't show any new lesions but did show 'something' near spinal cord which may or may not be a tumor. It looks like an elongated kidney bean to me. Recommended I follow up with an MRI in Oct.
Muscle biopsy in 2014 showed the Lyme bacteria and yet I can't get neuro to treat because the result is inconclusive ?!
Posted by Keebler (Member # 12673) on :
- You will never get a neurologist to treat lyme. It's just not what they do. Ideally, they would refer to an ID doctor, infectious disease doctor. But they are worse than ever at even wanting to understand the complexities involved.
Can find an ILADS educated lyme literate doctor?
You say that you were "one of the first members of LymeNet" yet some of the politics of lyme had not yet maybe been clear?
Do you need that detail on why the medical / insurance system doctors are not going to address lyme ?
If you do not yet have, be sure you have the hard paper copies of all your test results in a fill at home. -
Posted by Keebler (Member # 12673) on :
- In the meantime, you might get the books on lyme and tick borne infections [as the negative tests do not mean there can't be an infection on board - lyme rarely travels alone].
You might get books by Stephen H. Buhner (pronounced as the "beau" part of "beautiful").
He is a master herbalist who is exceedingly lyme literate. There are some things we can do for ourselves if we can't access a LLMD or why you wait. And his books explain so much about how these infections work that even those on all Rx protocols can benefit. -
Posted by bluelyme (Member # 47170) on :
Myself and many others here are experiencing a lower motor neuron disfunction..demylienation disorder .some have had resolution with abx targeted at bartonella and mycoplasm
how much treatment have you done ?.. how long did it take for the bugs to that much damage ... do you have help now ? welcome back ,currently trying to remylinate with biotin ,highdose efa ,royal jelly
Posted by Robin123 (Member # 9197) on :
Wow - thanks for reporting in here - want to let you know that Lyme patients who went to New Delhi, India for stem cell injections reported that quadraplegics and paraplegics were getting their mobility back there.
I don't know if this is being done anywhere on the East Coast but if you're interested in looking into it, you could start to check around.
Posted by Lymetoo (Member # 743) on :
Welcome back!
Please do not depend upon a neurologist to [not] treat your Lyme and coinfections. Yes, you are bound to have some coinfections.
Find the best LLMD out there!
Posted by Tincup (Member # 5829) on :
Hey Moons,
Welcome back! Lyme can cause symptoms that are often misdiagnosed as transverse myelitis. TM is basically caused by what the experts say is inflammation. (Not that they know, mind you.)
Lyme bacteria/infection can cause a LOT of inflammation, especially over the years it builds up.
The gerbil (neurologist) you are seeing - well it sounds like they want to diagnose you with A.B.L.S. (Anything But Lyme Syndrome.) It happens a lot these days, sorry to say.
May I suggest, before heading to India for stem cell stuff, getting a doctor who actually knows about Lyme and knows what they are doing? If you go to the Doctor Referral page at the link below (menu on your left) you will find info on Lyme treating doctors.
Don't know how far you are from NY (can't be a planet away if you are in NJ) may I suggest checking out Dr. L. (Internist)?
If you were mine to do with what I wanted, that's where I'd send you in the condition you are in now. (RARELY will I recommend a certain doctor for anyone anymore, but I feel this time it is appropriate.)
Also, if you scroll down past the names listed, you'll see a link for Chiropractic Neurologists. There aren't many of them, but the ones out there that incorporate their neurology training in their practices have good success rates with Lyme (and many other) patients.
Most take insurance too, a big help if you have some.
Hope that helps some.
Posted by Moons (Member # 48609) on :
Thanks all!
Can't head out to India. Closer to N Y.
Am seeing a chiropractor Friday.
I've seen a few recommended LLMDs and a neuro from here and many others.
This neuro is not an LLMD but she is open minded.
I shall return.
Posted by Moons (Member # 48609) on :
Posts are kind of mixed up on this thread at least on my computer.
I was definitely infected 20 years ago and possibly prior to that.
My history is complicated. I've been directed to LLMDs as well as other docs. A couple of the LLMDs were worthless. One still appears on the recommended list. I haven't been on abx for 10 years now but have done extensive orals as well as IV Rocephin for 10 weeks. The IV produced the best results of the century in 2002.
Thanks for all your help. Hoping to see another LLMD soon.
Posted by me (Member # 45475) on :
Do you have an appointment with a LLMD lined up?
Posted by Moons (Member # 48609) on :
I have left a phone message for one that friends of a friend swear by, but I haven't heard back.
Sent an e-mail to another but haven't heard back.
Posted by Moons (Member # 48609) on :
When I clicked on a doctor recommended on a link above, I was directed to a larger organization. They require a $1600+ fee to join.
Another doctor on the LLMD list nearly killed me over 10 years ago. I'm getting a little leery of this list.
Posted by Moons (Member # 48609) on :
Got a return call from recommended MD. She doesn't accept Medicare which is what I have along with supplemental insurance.
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