BlsdMama Posted February 8, 2018 Share Posted February 8, 2018 'Kay. So today is a follow-up at Mayo. We decide what next. Iowa says, "Primary Lateral Sclerosis / MND and we want another EMG because we see muscle changes."Mayo says, "Stiff Person Syndrome likely, MND possible, Lyme is up in the air but we can't help without a positive PCR."Kelly says, "This is freaking Lyme. Please don't let it kill me." So, I really, really, really hate looking foolish. It's a thing. And I'm about to lay out to my neuro why I think this is Lyme and look like a total fool, so if ya'all could pray for me? Test results I'm taking in: 1. ACE level - 53. Normal? 8-53. Indicative only for sarcoidosis. I have chest pain - probably my #1 problem area right now. I want them to look for sarcoidosis (biopsy.) It is supposed that sarcoidosis of the lung is due to bacteria and studies are showing Lyme is a very likely candidate with mycoplasma being up there as well. 2. 2014 test for syphilis - okay, this is a weird one, being married almost 22 years, but when I came back to Iowa, I had to go to the University for my cerclage because I was considered high risk. They ran a broad panel. While this test is technically negative, I did get a quantitative number. 0.9 is positive and mine was 0.2. Syphilis can test false positive if you are Lyme positive. Both are spirochetes. 3. Lyme test via CSF - there was a quantity in my spinal fluid. It was technically negative, but still, why the quantity? 4. My Igenex test - look, I know it's a questionable test, but I'm positive on bands 31, 34, 41, and 83-93 and Indeterminate on band 39. 5. I live in the area of mayonii - a new strand of Lyme, discovered at Mayo. I test negative but it has some pretty heavy implications, including neurological. If there was NO test available, they'd treat me because I look like the poster child for neuroloborreliosis. Because there is a highly unreliable test, I'm negative. 6. I have a rash. Oh my gosh I have a rash. It's fading now, but it started mid December. Blessedly I have pictures. My arms, my legs, some on my shoulders, abdomen, thighs. Mayonii is supposed to have a spotty rash, not a bullseye. 7. If not Mayonii, then is the rash sarcoidosis? (Which then goes full circle.) 8. Going back to Iowa still truly believing this is MND, there is such a thing as syphilitic ALS - spirochete (spiral shaped bacteria) causing motor neuron disease. If syphilis can, why can't Lyme? We already know that Lyme is nastier than syphilis. Worse, there are MANY people insisting their S.O. died from ALS and tested positive for Lyme. So, the theory goes that I do not have the crazy common Lyme infection and instead have some kind of deviant limb onset Stiff Person Syndrome - the deviant type is like 1 in 7-10 million. While I recognize the "fun" in being unique, I'm really not that special. ALSO, Stiff Person Syndrome has been brought on by bacteria. Specifically it has been brought on by Brucella. I've been tested for Brucella because my Iowa neuro has a sense of humor. Brucella is closely related to Bartonella. I have not been tested for Bartonella. So, today, I'm laying this out for my Mayo neurologist. I feel incredibly foolish. But how do I *not* fight for Lyme treatment here? The truth is she is going to say no. I am going to seek out treatment through my Lyme doctor. Mayo is going to continue to ignore the cases that don't test positive. Lyme is going to proliferate. And, hopefully, it doesn't get me. But it will get others because they don't have ears to hear. Prayers please. This isn't a knock against Mayo. I think they are remarkable. I like, genuinely like, my doctor. She is kind and compassionate and she will not make me feel foolish. But... I think they will push for either: Plasmapheresis with a Hickman (shudder), Rituxan, or botox injections. Of all of them, I like the Botox best. Pray they let me keep IVIG - It was a fight with insurance to get it and I do not want to try to do that without the backing of Mayo in the future. 6 Quote Link to comment Share on other sites More sharing options...
creekland Posted February 8, 2018 Share Posted February 8, 2018 Sending prayers and hoping it works out well for you. :grouphug: You're not alone if it doesn't (your ideas go over like a brick wall to them), so if that's the case and misery loves company, you've got that too - just different issues. Quote Link to comment Share on other sites More sharing options...
hornblower Posted February 8, 2018 Share Posted February 8, 2018 Best wishes for you, Kelly. I hope you and your team figure this out & better yet, figure out treatments that help you! 1 Quote Link to comment Share on other sites More sharing options...
mommyoffive Posted February 8, 2018 Share Posted February 8, 2018 Sending all my prayers your way. Quote Link to comment Share on other sites More sharing options...
Selkie Posted February 8, 2018 Share Posted February 8, 2018 Hugs and best wishes to you. I hope your doctor listens. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
fraidycat Posted February 8, 2018 Share Posted February 8, 2018 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
aaplank Posted February 8, 2018 Share Posted February 8, 2018 Prayers tor the strength and courage to advocate for yourself, to present your argument clearly and rationally with minimal emotion, for listening ears from the doctor, for hope to carry you through the difficult days. Quote Link to comment Share on other sites More sharing options...
school17777 Posted February 8, 2018 Share Posted February 8, 2018 Praying Quote Link to comment Share on other sites More sharing options...
Carol in Cal. Posted February 8, 2018 Share Posted February 8, 2018 Praying, and I'm so proud of you for organizing your information so well, and also for advocating at the edges of the current standards of care, which hopefully will help you, but also may help many others in the long run. ((( )))) 2 Quote Link to comment Share on other sites More sharing options...
Pink and Green Mom Posted February 8, 2018 Share Posted February 8, 2018 (edited) Prayers to you, Kelly. This sounds so difficult, and I'm so sorry you have to go through this. Edited February 8, 2018 by Pink and Green Mom Quote Link to comment Share on other sites More sharing options...
Rachel Posted February 8, 2018 Share Posted February 8, 2018 Saying a prayer for you! Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted February 8, 2018 Share Posted February 8, 2018 Hugs & prayers! Quote Link to comment Share on other sites More sharing options...
Kanin Posted February 8, 2018 Share Posted February 8, 2018 I will be thinking of you. I feel like some doctor, somewhere, should agree to treat you for Lyme! Would the treatment for Lyme be long-term antibiotics, or something? I wonder if you'll have to seek out a naturopath or some type of non-mainstream doctor that has an open mind. Quote Link to comment Share on other sites More sharing options...
clementine Posted February 8, 2018 Share Posted February 8, 2018 🙠Quote Link to comment Share on other sites More sharing options...
Cindy in FL. Posted February 8, 2018 Share Posted February 8, 2018 I am praying that you are heard, and that the information is accurately evaluated so that you get the most effective treatment. Quote Link to comment Share on other sites More sharing options...
Junie Posted February 8, 2018 Share Posted February 8, 2018 Hugs and prayers. Quote Link to comment Share on other sites More sharing options...
East Coast Sue Posted February 8, 2018 Share Posted February 8, 2018 Praying that the doctor listens and moves with swift care to treat you for Lyme. (((hugs))) Quote Link to comment Share on other sites More sharing options...
Anne Posted February 8, 2018 Share Posted February 8, 2018 Kelly, you do NOT sound foolish at all!! I will pray for your approach to your doctor and that she will listen! Anne Quote Link to comment Share on other sites More sharing options...
Catwoman Posted February 8, 2018 Share Posted February 8, 2018 Praying here! And you don’t sound foolish — you sound incredibly smart because you’re advocating for yourself!!! 1 Quote Link to comment Share on other sites More sharing options...
scrapbookbuzz Posted February 8, 2018 Share Posted February 8, 2018 Kelly - TRUST your gut. PUSH for the doctor(s) to LISTEN TO YOU. This YOUR LIFE and you need to make sure they understand that. Not all doctors are impersonal jerks and some are. Just make sure they listen to you. There is no reason for you to feel foolish. You have obviously put time, sweat, and tears into your research. Just because they have a degree doesn't mean they know your body better than you do. I will pray for them to listen to you and do what is needed for you! God is in your corner on this! Quote Link to comment Share on other sites More sharing options...
Liz CA Posted February 8, 2018 Share Posted February 8, 2018 Praying that your doctor trusts your instincts about your body!! Quote Link to comment Share on other sites More sharing options...
EMS83 Posted February 8, 2018 Share Posted February 8, 2018 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
sbgrace Posted February 8, 2018 Share Posted February 8, 2018 Praying for this appointment. Quote Link to comment Share on other sites More sharing options...
Jean too Posted February 8, 2018 Share Posted February 8, 2018 Praying! Quote Link to comment Share on other sites More sharing options...
mamakelly Posted February 8, 2018 Share Posted February 8, 2018 Trust your gut instinct. Hope it goes well today. Quote Link to comment Share on other sites More sharing options...
mumto2 Posted February 8, 2018 Share Posted February 8, 2018 Praying!!! Quote Link to comment Share on other sites More sharing options...
AnneBlessedx4 Posted February 8, 2018 Share Posted February 8, 2018 Praying for you. I don't think you sound foolish at all. Quote Link to comment Share on other sites More sharing options...
klmama Posted February 8, 2018 Share Posted February 8, 2018 Praying for wisdom for all involved and for healing for you. Sent from my SM-S320VL using Tapatalk Quote Link to comment Share on other sites More sharing options...
Denise in IN Posted February 8, 2018 Share Posted February 8, 2018 You do NOT sound foolish, you sound logical, thorough, well-researched. But I recognize how difficult it is to fight against set views of the medical establishment. At any rate, I am praying for your appointment today and that God will connect you with the right people and treatments today and in the future. :grouphug: Quote Link to comment Share on other sites More sharing options...
mominco Posted February 8, 2018 Share Posted February 8, 2018 (edited) :grouphug: Prayers and GL. I was wondering if you were still on ivig! I hope they let you keep it. Edited February 8, 2018 by mominco Quote Link to comment Share on other sites More sharing options...
Mimm Posted February 8, 2018 Share Posted February 8, 2018 I think you sound remarkably well informed and like you've done an amazing amount of reading and research about all this. I'm sorry you are dealing with such an obscure condition. 1 Quote Link to comment Share on other sites More sharing options...
Twigs Posted February 8, 2018 Share Posted February 8, 2018 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted February 8, 2018 Share Posted February 8, 2018 :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
ktgrok Posted February 8, 2018 Share Posted February 8, 2018 Praying here! 1 Quote Link to comment Share on other sites More sharing options...
Katy Posted February 8, 2018 Share Posted February 8, 2018 I didn't comment this morning, but I did say a prayer for you. How did your appointment go? Quote Link to comment Share on other sites More sharing options...
chiguirre Posted February 8, 2018 Share Posted February 8, 2018 :grouphug: Quote Link to comment Share on other sites More sharing options...
Seasider Posted February 9, 2018 Share Posted February 9, 2018 I am just seeing this but, WOW, if you laid out your info for the doc as well as you did in your post here, they've got to consider seriously a Lyme possibility. Praying that all you said continues to burn in the doctor's ears, and that any tests ordered today will have some clearly defined results. 1 Quote Link to comment Share on other sites More sharing options...
Annie G Posted February 9, 2018 Share Posted February 9, 2018 Hope it went well and the doc was receptive to your ideas. :grouphug: Quote Link to comment Share on other sites More sharing options...
lllll Posted February 9, 2018 Share Posted February 9, 2018 :grouphug: and praying. You sound VERY informed to me. That's a good thing!! Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted February 9, 2018 Share Posted February 9, 2018 I would not wish this madness on anyone. I had to fight like hell for treatment for my daughter and in the end, insurance covered the meds and the surgeries for her port but not the visits to the Lyme doctor. I pray all goes well for you. Quote Link to comment Share on other sites More sharing options...
ikslo Posted February 9, 2018 Share Posted February 9, 2018 (edited) Thinking of you. Hoping they listened. Edited February 9, 2018 by ikslo Quote Link to comment Share on other sites More sharing options...
Guest2 Posted February 9, 2018 Share Posted February 9, 2018 Praying! Quote Link to comment Share on other sites More sharing options...
ktgrok Posted February 9, 2018 Share Posted February 9, 2018 Praying, and hoping you are just too busy to update. You're often in my thoughts. Quote Link to comment Share on other sites More sharing options...
FloridaLisa Posted February 9, 2018 Share Posted February 9, 2018 Just seeing this, Kelly, but I'm praying that you will get a green light to go AND the medical advocate you need to treat this. Quote Link to comment Share on other sites More sharing options...
El... Posted February 9, 2018 Share Posted February 9, 2018 :grouphug: :grouphug: I hope your appointment went well today! Quote Link to comment Share on other sites More sharing options...
BlsdMama Posted February 9, 2018 Author Share Posted February 9, 2018 Thanks all for the support. Well.... good and meh, i would say. So Mayo thinks it is definitely Stiff Person Syndrome. I guess that’s the good-ish? Because of the rash, I do get an appointment with Infectious Disease. Woo hoo. (I am excited about that, btw.) And Dermatology is going to attempt to culture it. There have been cases in which bacteria brought on SPS. Yesterday was good. This afternoon I have an appointment with a fella who is one of the leading experts in Stiff Person. Should be enlightening. They confirm they believe this is a variant known as Stiff Limb. Continuing IVIG and making a drug plan to try to slow down the progression. Not a great disease but also not Motor Neuron Disease. (((((Hugs))))) to every single person out there struggling with MND and their caregivers too. 28 Quote Link to comment Share on other sites More sharing options...
Liz CA Posted February 9, 2018 Share Posted February 9, 2018 So tell me if I understand this correctly: Mayo thinks it's not ALS, not Lyme but SPS? What is the predicted progression of SPS? Is it manageable if not curable? And can you talk the infectious disease doc into testing for any Lyme strand known to mankind - just in case? ;) If it was Lyme indeed, and you got the right treatment, would the symptoms vanish eventually? 1 Quote Link to comment Share on other sites More sharing options...
learning123 Posted March 13, 2018 Share Posted March 13, 2018 I just saw the update. We're praying for you. Quote Link to comment Share on other sites More sharing options...
Spryte Posted March 13, 2018 Share Posted March 13, 2018 Thinking of you. Hoping you still have an LLMD on board. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted March 13, 2018 Share Posted March 13, 2018 Still praying for you, Kelly! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.