I’m going to look into the somatic tracking!
Thank you
Excellent post, @Simkie! I went through the same thing and the denial of Lyme by the “medical establishment” is super frustrating…and just typing that makes me worry that I sound like a weird conspiracy theorist, haha. I’m glad you’ve gotten good treatment and are feeling better!
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I’m looking into finding a specialist semi close to me. I’m fairly certain something is going on with me, but current doctors seem to be at the end of their diagnostic tools.
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@lenapesadie, if regular doctors can’t seem to diagnose or help you, it is time to get out of the box.
Try to find a homeopathic MD (they exist).
Up front homeopathic physicians may seem more expensive, a good one will spend 2+ hours examining you health history, what makes you worse, when you get worse, go into the medical problems of your ancestors, and various other things before they prescribe you a remedy. Their diagnostic “tools” are your medical history and their exam, and a good homeopathic doctor LISTENS to you so they can prescribe the correct remedy for you and your symptoms now. No demands for six vials of blood or anything like that.
Homeopathic remedies are rather cheap, I have yet to spend over $25.00 US on one. Me finishing a whole bottle of one remedy is RARE in the 27 years I have been using them.
When I was young and starting to have problems with my MS we lived in Chile which had a solid culture of homeopathic medicine and trained doctors in it. Of course my parents did not consider this modern medicine, and I never got to see a homeopath. This sort of makes me mad, homeopaths prescribe according to what is happening to you NOW, they go to the repertory and Materia Medica to prescribe the remedy that best fits your symptoms NOW, without having to take hundreds of expensive medical tests like with regular (allopathic) doctors. They do take your medical history into account but the emphasis is where you are now. I think that a trained homeopathic doctor would be able to see that something was wrong with me and prescribe me a remedy that worked. As it was all my symptoms were brushed off as inconsequential by EVERY regular doctor I saw.
A lot of people pooh-pooh homeopathy. I just remember going to my neurologist one day, I could tell she was afraid I had gone into the chronic-progressive form of MS, each appointment I was WORSE, I walked WORSE, and my soundness exam was WORSE. I had gone from just needing one cane and I was hobbling around with a wheeled walker and rapidly heading to using a wheelchair to move around.
But one day I read a book by a neurologist (Island of the Color Blind) who described his “trip” with properly prepared kava kava in a South Seas Island (sorry I forgot which one) that did the kava kava as part of their culture. I read his account, and after a page I was saying to myself "this really, really, really sounds like the symptoms of my MS.
I went to my health food store, got kava kava tincture, and I made up my homeopathic dilution/potentized remedy.
After taking it around a month, I saw my neurologist. I had two canes, my winter coat, my bag and other stuff in my hands, and I walked toward her with my canes under my arm.
Her reaction "LOOK AT HER, she is WALKING!!! My neurologist did not particularly “believe” in homeopathy but she believed in the evidence before her eyes, I had reclaimed a good bit of the physical abilities I had lost. After that my neurologist never even batted an eye when I told her about the remedies I tried.
All the homeopaths I’ve talked with tell me their patients come to them often after years of trying to get a diagnosis and treatment from regular doctors. The homeopath was usually their last chance of any effective treatment.
No, I did not get a complete cure from the homeopathic remedies. I did not get a complete cure from regular doctors either. All I was facing was degradation of my body in the future, getting worse and worse with no hope. Then the first MS “medicine” came out. This medicine finished my crippling, before I took it I worked full time at a demanding job, after that MS medicine I rapidly degraded and ended up on SS disability, which I got the first time I applied since I was so bad off physically. The same thing happened with the other two supposedly miraculous approved MS medicines I tried, they crippled me big time.
The homeopathic remedies NEVER CRIPPLED ME OR MADE ME WORSE. Some did not work on me because a certain homeopathic remedy does not always work on all people, but then I would go back to the repertory and materia medica and go on to the next promising one.
I can STOP an MS exacerbation with a homeopathic remedy, usually Argentum nitricum, but if my symptoms change I might have to go to Piper methysticum (homeopathic Kava kava) of Plumbum metallicum. I have not had to go on steroids to stop an MS attack for years and years, I think it has been over 20 years now. (note–these remedies probably won’t work for others with MS because other people with MS do not have MY body with MY symptoms and problems.)
And my neurologists tell me to just go on doing what I do on my own now because I stopped getting worse year after year. My neurologists generally look happy to see me now, I am still walking on my own two feet and I can do it without canes if necessary and my soundness exams do not show any new neurological problems.
Riding horses is challenging, but in the past two years I have been able to switch to riding three different horses with double bridles and I can handle the two pairs of reins without many problems. Yeah, I am just walking and trotting some for 30 minutes a ride, I can’t do any more than that. BUT I actually improve the horses I ride and my riding teachers will put me up on horses who have some problems (but are not explosive) because I can figure them out eventually and improve the horse. My riding teachers LIKE seeing me train their horses.
If I had relied on regular medicine I would be dead, because I would have been in a nursing home when the Covid-19 pandemic started, crippled by regular modern medicine and their much vaunted but useless to me “miracle” drugs for MS. I most certainly would not be able to ride horses, much less re-train horses who had not very good starts in life.
There is a National Society of Homeopathy (I think that is the name) and they keep track of the doctors etc., who have had homeopathic training in each state. A homeopath with a MD after his/her name first goes to medical school, graduates, does the hospital internship, and then finally gets the homeopathic training. They are real doctors, trained in modern medicine as well as homeopathy.
Good luck. There IS an alternative to modern allopathic medicine, with medically trained doctors, nurses, pharmacists etc…
If you can’t find a homeopath look into Traditional Chinese Medicine or Aruyvedic (sp?-traditional Asiatic Indian medicine.) They may be able to help you too, but I have no experience with them.
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After much ado, I had my SI injected two weeks ago. Just steroids with a touch of anesthetic. The Dr that did the injections will continue to keep me as a patient in the event the injections need to be repeated and/or I have issues with another joint.
Complete cure so far. I have zero symptoms now and am off all medications, less my Pepcid. I’ll be doing a round of Nexium soon to try and resolve that.
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That is good news! I hope you don’t have any further problems.
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Great news lenapesadie! Enjoy the comfort. FWIW my spinal injections seem to last 4 plus years. YMMV
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Thank you! I’m thrilled 
I’m hoping to swing a leg over a hose this weekend for the first time in a while!!!
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That’s very encouraging! Thank you for sharing!
I hope the needle was a little shorter than the one they use for horse SI injections! Very glad to hear that you’re feeling better.
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Oh i love to hear this! Hip hip hooray!! Go get em!!
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I was laying face down so didn’t even see the needle. I guess my muscles aren’t horse size so probably not as big a needle. Was done under x ray though! It was an odd, really odd, sensation when he was actually putting the medicine in. Other than that it was a quick and easy treatment.
I am kinda excited about telling my vet though lol. I told the nurses that did the procedure prep I was keen to tell vet and they got a good chuckle!
Thank you!
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Yes! It’s wonderful to be able to do stuff! 
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That’s incredible! Congrats on the relief! How’d they ever figure that out? Looking back up through this thread, you sure had plenty of imaging that should’ve caught that area! (It’s amazing to me how variable opinions can be on imaging, and how much it can miss 
)
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My neurologist referred me to his pain management doctor. He reviewed all my films and saw issues with some disks in my neck and “the mild degeneration in lower facets” (SI). Since the majority of my issues were concentrated in my lower back and limbs, we injected the SI. Voila!
The “mild degeneration of lower facets” was noted on the lumbar x ray taken at the ER the day after Memorial Day. The MRI (done without contrast) taken of my lower spine a few weeks later had consistent findings. The final MRI done with contrast by neuro also had consistent findings.
My previous PCP did not think the first two sets of images had significant findings. My current PCP felt joint injections were warranted based on same images but felt waiting until the neuro work up was complete was the better choice.
The pain management doctor was the first to review the images in detail with me though. He seemed almost bored, like duh this SI is hurting you. Surprised your neck doesn’t hurt more; it probably will in the future. Very matter of fact. 
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Please note that I’m not comparing you to a horse! Many of us are familiar with the horse with rotten radiographs who never takes a lame step. Then there is its evil twin, the horse with the pretty dang normal rads that is quite lame for no apparent reason.
It can work the same way with people according to my ortho/ pain doc. They use the imaging to provide a clue as to the source of the pain, but it’s not definitive. I’m glad you saw a doc who accepted your pain and your description of it as real* and was able to link it to a solution. Hooray!
- Not that your other docs didn’t, but we all know that pain is frequently brushed off by medical professionals. And having a stepdaughter who is a professional hypochondriac I get why!
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Interesting. I have degeneration in the lower spinal facets and have never once heard that term applied to the sacroiliac joint space. This is really how the term has been applied by all:
Did your imaging note anything sacroiliac in particular? Or at what specific level degeneration was seen? So glad you’ve found someone who was able to figure it out! Just super curious about the path to the answer, you’ve been through so much!
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No worries, I’m totally comparing myself to a horse! Buwahahahaha
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He did refer to the SI specifically that there was , I believe in the contrast MRI, maybe some narrowing? But that the narrowing wasn’t as “concerning” as this degeneration also here on SI and referred to the hospital x ray? Maybe… I thought he indicated the mild degeneration here, there and here…I thought he meant starting here and down through here to the SI where we have some narrowing but not evidence (yet?) of nerve impingement? And injecting the SI was partially to confirm a diagnosis. He felt my symptoms were more consistent with SI troubles.
I could entirely have misunderstood what issues went with which body parts. I’m not terribly educated on spinal anatomy or experienced reviewing images so I wouldn’t be surprised if I misunderstood.
Also, was pretty desperate. Would have agreed to try anything 
I know for sure it was a SI injection though 
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Thats easy to diagnosis and very dangerous. Just need iron panel and be sure to include Ferritin testing though her symptoms do not suggest that diagnosis.
