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BlsdMama

Well, that was fun while it lasted. UPDATE - 1st post

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Kelly,  I am so sorry to learn of this latest diagnosis. I don’t know what to say beyond you are amazing.  I will keep praying for you and your family!

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Oh man, I'm so sorry about all of this.  I'm so glad you're at Mayo.  I like to always remain hopeful that a cure or at least something to slow it way down is just around the corner.  When that happens, you'll be one of the first to know about it.

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As others have mentioned, I am so sorry you have to walk through this.  It truly is an awful disease. I will be praying for you and your family.

I don't know if your church has a Stephen Ministry, but I would pray about if and when that might be something that would help you and/or your husband. Maybe you don't feel like you need it now, but it might be something to think about for later.  You would receive regular care from a female Stephen Minister to help you process through everything.  It's completely confidential. It's basically just a listening ministry. If your church does not have it, another local church might have it and be willing to assign one of their ministers to you. This is a huge burden you are carrying. I am praying that the Lord would raise up believers to help carry it. 

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https://www.ncbi.nlm.nih.gov/pubmed/24951641/

It sounds like you have had 2 specific findings only?  glycine receptor antibody and spirochetes in spinal fluid?

 If I were in your position I’d go after both things  (Lyme or whatever type of spirochetes were apparently detected + PLS or whatever the detected antibody seems to indicate). — researching personally as much as possible for what can be done and what might help at least one without hurting other. 

People Ive known with ALS probably had pesticides or other toxic exposure so I’d also try to clean up local living environment as much as possible from a toxics POV  (eta: in case it could apply to pls too)  

 

I’ve been living with autoimmunity for years, also probable Lyme, also am a melanoma survivor.. It is certainly possible for one person to have more than one problem 

Ive been reading a book about Telomeres and another about sleep trying to improve underlying health. 

 

Hugs and prayers

Edited by Pen

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Hugs! That just sucks. I mean, I'm glad it is PLS rather than ALS, as it seems that some PLS patients do retain speech, and it doesn't effect their breathing, etc, but it's hard to be happy about small blessing in such a moment. I'll be praying for you. And please, do remember that feeling badly for your husband won't help him one iota. Not one bit. Sometimes I catch myself feeling badly for a person out of a sense of solidarity, or even guilt..as if it would be disloyal not to lay awake worrying about them. But then I am reminded by a small voice from on high that me worrying won't make their burden one bit lighter, it will only hurt me, which will actually make their burden heavier. So I give myself permission to stop being anxious for them, as there is no point. Maybe that will help....either way, hugs and prayers your way. 

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I am so sorry to hear your news. My sister was diagnosed with ALS over 7 years ago. I don't know how different PLS is from ALS, but if it can involve losing your voice, I would seriously look into voice banking, especially since you still have young children. My sister has a computer communications system with no voice synthesizer. It's not perfect, but it's pretty good, and it allows her to communicate. All the best.

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BlsdMama,

I want to hug you and squeeze your hand and offer you tea (if you like that sort of thing). You are so valiant and courageous. 

I am so sorry. Prayers and friendship to you.

 

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Kelly, did you ever have a positive Lyme disease test or get a tick bite with a rash?  Because after all, while Lyme plus MND may be quickly fatal, PLS seems to give a normal life span.  Yeah, with wheelchairs, computers, etc, etc, but I saw Stephen Hawkins in person at college when he came and this was somewhere between 81-86 (cause it may have been after I graduated but not dh yet).  He was already in a wheelchair, etc.  Actually right now looking at Wikipedia, he was diagnosed in 1963 so he lived with it for 55 years and he was 76 when he died which is a normal life span. 

Now about wheelchair and your 5 year old----- One of the biggest benefits I had to my chronic illnesses and disabilities is the effect it had on my kids.  Number one- they are super compassionate and aware of disabilities and frailties.  They look out for people who are excluded, disabled, different, etc.  It has really built up their characters.  Number two-  although they have trouble with it at times (anxiety runs in my family), overall they are people who try to enjoy what they can when they can.  It has helped them very much with their own health struggles.

It will take time and there will be times even when you have adjusted to the new reality, that you fall right back into self pity and regrets.  It just s*cks sometimes.  And if your family is anything like mine, while they will usually be supportive, at times they get frustrated, etc too.  I have found that being on Facebook support groups for my issues really helps.  For one thing, as a Christian, it helps give me a purpose since I pray a lot more now and also can give words of support.  I am unable to do hardly any volunteering and that has really gotten me bummed out but this is one new thing that gave me a new purpose.  But I am past having little ones here. 

Also, when you can't do one thing you enjoyed before, find new ones or  greater time to enjoy other ones you already have.

I have been praying for you and will keep praying. 

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On 10/19/2018 at 6:16 AM, BlsdMama said:

 

 



I don't disagree.  The problem isn't so much the Lyme. The problem is that whatever it triggered, my body now makes the glycine receptor antibody.  It exists in 4% of the population.  They suspect in some people benignly.  The people it does affect?  Spasticity, rigidity, spasms, myoclonus, encephalomyelitis, (PERM), stiff person.  What are the chances I have symptoms AND the antibody but the antibody is benign?

So - without the stiff person diagnosis, no plex and no IVIG, which are the treatments.  So then what?  Progressive deterioration.  


So I have an LLMD and she's willing to treat.  I have a stockpile of doxycycline.  The issue is that doxy can produce an acceleration in people who have MND.  That's a frightening risk, kwim?  Especially for someone for whom the progression is slow.


?


Unfortunately nothing ever went away.  My balance improved but the leg has grown more spastic, the clonus has significantly worsened, my other leg is hyperreflexive and has developed mild clonus, and now they tell me the right arm is beginning to show signs of weakness and hyperreflexia.  


I know.  Unfortunately they are the experts on glycine receptor antibody.  I don't see a way around them and if anyone does, I'll listen.  An LLMD is something I currently have.  She cannot help with PLS/ALS nor can she help with glycine receptor antibody issues - only Mayo and the Cincinnati Clinic have significant experience.


So, after they found it ,I did go through treatment extensively - 7ish weeks of intravenous ceftriaxone, azithromycin, and daptomycin.  Then they found the glycine receptor antibody and we stopped antibiotics and begin the trials which seemed the most prudent thing to do.  


The issue I seem to run across is that those of us who have a tandem diagnosis of MND and Lyme - we don't recover.  If you google the stories, you get the biographies of people diagnosed with ALS, then they discover they are Lyme positive, go through treatments, and then you google their name and come across their obituary.

That doctor, the horrible one who is making Youtube videos, Alfred Miller:  https://www.youtube.com/watch?reload=9&v=Fr61GV8JCYQ


 -  Yeah, google his daughter in law.  Oh, here's her obituary: http://www.legacy.com/obituaries/bostonglobe/obituary.aspx?n=dana-k-miller&pid=174064437&fhid=8784 

Now, wouldn't you think, since he was convinced she had Lyme that they would have all funds going to Lyme research?  But they don't.  Gifts are to be directed to ALS Therapy. 

There's a connection here, but virtually no success with the exception of Martz.  He "provoked" a positive Lyme test with doxy - the reason I collected my little stockpile:
http://als-cure.com/antibiotics-als/david-martz-cured-his-als/ 

However, studies show that tests done relatively quickly after taking doxy tend to be more false negative. 

I think the main problem is that many are profiting off the Lyme world and it's so hard to tell fact from fiction that it's crazy.  I think the game plan going forward is clean eating - there are some studies that show a reduction in progression for ALS/PLS and it's good for Lyme.  I'm checking out the Buhner and Cowden protocols.  And I'm doing some things that have been indicated in some rare ALS reversals.  Most ALS reversals are shady.  There are only about 38 confirmed reversals.  Most were men, they were (if I remember right) EXCLUSIVELY limb onset (which I am), and were not rapidly progressive.  Plus what can it hurt?  Apparently cannabidoil is heavily suspected to have some positive affect.  Curcumin (active ingredient for Turmeric) is another.  Who knows?  Meh.

 

 

((((Hugs))))

I think Buhner is very worth reading for overall understanding and approach to life and health   I have a number of his books  

The Nutramedix products are IME much easier to use than Buhner protocol, especially when not feeling well or capable of making up ones own herbals    But you don’t have to limit yourself to one or the other  I use a few things from Buhner, and a few Nutramedix tinctures, both   All carefully started in minute doses to watch for negative reactions  

 

This could also relate: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3307240/

 

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—————

 

On Alfred Miller and his dil 

I don’t know if which disease people choose to help fund research on necessarily means that there is never a connection between the two, nor does death 11 years following an ALS diagnosis (which I think is situation for Miller’s dil) necessarily mean all that much. Sure, Hawking lived 50 years, but many with ALS die within five years, so is dying 11 years after diagnosis a sign she was harmed by thinking Lyme was relevant?  Maybe, maybe not.  Chronic Lyme is hard to deal with in and of itself  — and If there is significant neurological damage, whether or not related to Lyme, that is a whole additional serious situation.  You could look at as she got an extra 4 years or so with her kids beyond typical ALS life expectancy, or you can look at it as she was diagnosed; then she died .  

Perhaps both are true.

 

Considering how hard it is to recover , to actually be cured from any neurological manifestation of Lyme, I don’t find this especially surprising  

 

 

 

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