Mayo CLinic

[GodsStudent]

Hi Family:

I have been accepted to go to the Mayo Clinic. My appointment is Feb. 13.
Please pray that I can be treated and get this RSD into remission. Since last year, it has traveled throughout my body rather rapidly. In the past two weeks it has now started moving into my face, affecting my left eye and above the lip on the right side. I am terrified that once it's there, even if it goes into remission after treatment, it will always be there, and it's in a lot of important places (hands, one finger, both legs, one arm, face, and most of all, it started in my spine and low back area). It would take more pain meds than I could reasonably tolerate to help me "feel ok"....so I am in constant pain every day, all day. I need doctors who can help me get this under control and keep it there, and it will take very special doctors who understand the nervous system to do that, and these kinds of doctors are quite rare, as is the disease. Also, so many different pain departments at big places like Mayo, Johns Hopkins, etc., have such different ideas about how to treat this, I have fear of "picking" the right place, because I have no idea which treatment is really a good one for this condition. Please pray that the Lord direct my steps and where I end up and who handles my care.
Thanks so much for your prayers.

Also, I am going to do a GoFundMe page, because nomatter where I go, I need a lot of help raising money for my care. If any of you would like to help on my page, or help circulate it on your facebook or the internet, please PM me and I will send you a link....and if you do that, I would be so forever grateful.
Thanks again!!!
God Bless you for your prayers and support.

Lisa

[shorttribber]

Thank our Lord, we will all pray that all goes well.

[burien1]

I am praying for you, Lisa ! Wish I could help financially, but I have health and financial problems myself.
God will provide for our needs !

[GodsStudent]

No worries, Burien1. So far, it looks like I may NOT be able to go there. They are asking me to bring $5000 with me and my insurance may not approve me to see them. That said, my insurance is working on my case and will get me somewhere. I am not married to Mayo....I am married to whatever the Lord works out for me, so, perhaps things are going to change to something else???
I will keep the thread updated when I get more information. It's fluid right now.

[extravagantchristian]

GS,

I looked it up and it sounds like RSD is an autoimmune disorder.

If I were you I would defiantly start taking some probiotics, I think it could improve your condition if not heal it completely.

I say that because I've spent countless hours learning about how probiotics affect our immune system, and how to ferment them back when I was sick with my own rare disease.

I found that the amount of probiotics in most foods and pills aren't enough to make much of a difference, so that's why I learned to ferment them on my own. I bought 5-6 different brands of probiotic pills and put them in jars of juice to grow. About half of them didn't grow, but a few did, surprisingly it was the cheaper brands that had the best results. You can tell that the bacteria have successfully fermented when the juice starts bubbling like carbonated water.
I also fermented fresh fruit and whey from yogurt and found that most brands of yogurt that claim to have billions of live bacteria are lieing, most of them did not ferment at all.

So, the last time I made probiotics, I used Nature Made advanced with 75 billion live cultures. I put 4-8 capsules into a quart jar of grape juice, it took about 1-2 days for it to ferment. The trick is keeping the juice warm, the bacteria won't multiply very fast if it's too cold. They always grow better in the summer, but I used a little space heater in the bathroom to keep it warm, but not too hot or else they could die.

You should try it just to see if it might help.

[GodsStudent]

Hi EC:

There isn't ANY consensus on RSD in the medical community, frankly. It's been described to me to be like muscular dystrophy of the nervous system, so it involves the nerves instead of the muscles. That said, it is an illness of the central nervous system (spine and brain). Noone anywhere that I know of is treating RSD as an autoimmune.....but that being said, I can't imagine that probiotics would hurt me????

So, this juice you describe, after it ferments for 2 days, do you just drink it?

If you are drinking it, how often are you doing it....every day, every two days, once a week?

I am not opposed to trying what you are suggesting, because it doesn't sound hard or dangerous or expensive, so I'll give it a whirl, but I need some really good and exact instructions to ensure I either do or don't get the results.

How long would I do this before knowing whether it works or not?

I think posting it here instead of doing PMs is better, so others can follow along and, if it helps anyone, it would be so worth it!

Thanks for sharing, EC.

[extravagantchristian]

Yes, after the probiotic pills have fermented in the juice for 1-2 days, you just drink the juice. You know it's ready to drink when the juice starts bubbling like pop. Use the canning jars because the you can feel the lid get firm when it's bubbly. I would drink 1 cup per day.

I don't know for sure that RSD autoimmune related, but an article I found:

https://www.painpathways.org/wp-content ... 4-2013.pdf

This disease RSD is neuro-autoimmune. Researches have isolated two autoantigens involved in the condition. The research was published in April 2011; Autoimmunity
against the b2 adrenergic receptor and muscarinic-2 receptor in complex regional pain syndrome
by Danielle Kohr, Pratibha Singh, Marlene Tschernatsch, Manfred Kaps, Ervice Pouokam,
Martin Diener, Wolfgang Kummer, Frank Birklein, Angela Vincent, Andreas Goebel, Gerd
Wallukat, and Franz Blaes. We now know for sure that neuroinflammation is involved in RSD.

Probiotics interact with immune cells and proteins, and can calm down the over active immune system. They could help with a lot of conditions like psoriasis, allergies, asthma, lupus.

Link to a medical journal:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4006993/

Purpose of review
The beneficial effects of probiotics have been demonstrated in many diseases. One of the major mechanisms of probiotic action is through the regulation of host immune response. This review highlights the recent scientific research findings that advance our understanding of probiotic regulation of the host immune response with potential application for disease prevention and treatment.

Recent findings
Probiotic genomic and proteomic studies have identified several genes and specific compounds derived from probiotics, which mediate immunoregulatory effects. Studies regarding the biological consequences of probiotics in host immunity suggested that they regulate the functions of systemic and mucosal immune cells and intestinal epithelial cells. Thus, probiotics showed therapeutic potential for diseases, including several immune response-related diseases, such as allergy, eczema, viral infection, and potentiating vaccination responses.

[GodsStudent]

Thank you, EC.
Another person on this site emailed me last night and told me to watch the Netflix documentary "Root Cause." I did and in my case, I had significant dental work that involved many root canals and also had my wisdom teeth pulled. After watching that documentary, which blew my mind, I was stunned by the claims in it, which is (this is paraphrased and significantly simplified) that bacteria cannot be avoided in these processes and even get down into the jaw bones and stays and lives there forever, no way around it (and they gave TONS of evidence from MANY studies which cannot be refuted).

They said on this documentary that these modern day dental practices are literally causing heart attacks, cancer and all sorts of unsavory nervous system issues, and even MS....I don't think I can ignore what I learned on this documentary, because there is just too much evidence and I am just so sick....so I am going to figure out a way to find out if this might be part of what is going on with me.

Anyway, to that end, probiotics would seem a very appropriate thing to start right away to offset any potential relationship between my immune system and/or nervous system having such strong and alternate reactions to wellbeing.
I am so appreciative to you all for reaching out to me with this information!!!! God is good and family on FP is awesome!

[extravagantchristian]

Good, I hope it helps One of my daughters has bad allergies so I'm going to start giving her probiotics.
They're good for everybody, and we all have them naturally in our bodies. The more the better.

When I was sick I learned that doctors can be pretty useless sometimes, there is so much they don't yet understand about our bodies, and if it's not an obvious fix they seem to either misdiagnose or brush it off as no big deal.

Oh and probiotics are biblical! Paul told Timothy to drink a little wine for his frequent infirmities because wine naturally contains good bacteria from the grapes, that grow right along with the yeast. Now days we add chemicals to kill the good bacteria, to keep wine from becoming sour but they didn't do that back then, so wine in those days used to actually be good for you. It also contained less alcohol.

[sacredcowbasher]

God bless you Lisa, we will be praying

[GodsStudent]

So far, I've been seeing a new pain mgt. doctor. He changed my medication which is helping to get my pain under control which is critical, because uncontrolled pain causes the entire nervous system to become hyper vigilent, reacting to everything, which is where he thinks I am right now.
He is also doing some procedures, which wont take care of all my issues at once, but is a starting point. The original spine injury was on the left side of my spine and he is doing a procedure twice to see if I get significant relief both times for 3 hours each. If I do, then he is going to burn away 4 nerves on the left side of my spine, which he says will give me 6-12 months of relief from that particular issue. Yesterday he did the first injections (test) and it gave me significant relief. Actually, he told me to be active during the time and I was the whole time and I did really well. Im terrified, because it did work and that likely means I will be getting 4 nerves burned which sounds extremely scary to me. That said, 6-12 months relief sounds amazing, too....so I am prayerfully willing....

[Resurrection Torchlight]

Lisa,

It is so good to hear that you had some brief relief. Please make sure to let us know when you might have that procedure done so we can be in prayer for you at that time.

Also wondering what brand probiotic folks here would recommend. I have always heard that refrigerated varieties are best, but wondering what others think.

RT

[Jericho]

There has been some debate how effective probiotics are. For some people they seem to work good and for others not. The problem is everyone has a different microbiota makeup. They are unique as our fingerprints, so one size does not fit all. But if you are going to try them then make sure you get some with Acid Resistant Capsules (AR-Caps). Eating foods with live cultures is also beneficial: yogurt, kiefer, sauerkraut, etc.

[extravagantchristian]

If you take a probiotic capsule you're probably not getting enough lactobacillus to turn around a full blown auto immune disease. Not as much as you would if they were fermented and given a chance to multiply. And no guarantee that there really are live bacteria in those pills.
Same thing with yogurt. Homemade saurkraut might work, I've never tried it though.

I found 2 links to scientific medical journals that suggest that RSD could be autoimmune, and there's TONS of evidence that probiotics help the immune system.
So even thought you don't have proof, it's promising.

The trick might be finding the right strains of probiotics that bind to the specific protines/receptors. Strains that originate from fruit are different than ones that come from milk. Apparently they don't all act the same. When you buy probiotics it tells you what strains are in them.

https://www.ncbi.nlm.nih.gov/m/pubmed/30124090/

https://www.healthrising.org/blog/2013/ ... ion-model/

This one is good:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6213508/

[Loop]

Homemade saurkraut might work, I've never tried it though

Are you saying you've never tried home made sauerkraut?
Sorry but that caught my attention lol, my mom canned almost everything you could think of...

[extravagantchristian]

Loop, I've watched videos on how to make it before but never made it myself. It sounds good, but seems like it might be hard to get it to ferment.

[Loop]

be hard to get it to ferment.

As long as you keep it in a cool place its not hard at all... My mom's was the best... My Aunt made the best pickled corn... Now I'm getting hungry and missing them my mom and aunts that is..... and the Pickled eggs, pickled green beans, pickled cabbage stalks………. I'm sorry got off topic..


Prayers coming your way Lisa...

[Spreading Salt]

Dearest Yeshua,

I pray that this new doctor does good for Lisa. Please bring the pain relief! If probiotics are a help, let her find the ones that work for her body and boost each and every cell through these little guys. I pray she is encouraged and hopeful through the upcoming days and trials. Fresh strength Lord. Compassionate and skilled care. Amen

[GodsStudent]

I have been seeing my new doctor every week, because my case is complex and each appointment with him is exactly 15 minutes, per patient, per patient slot.

We are doing some things, but everything gets denied, needs special paperwork by my doctor and his staff and the person at blue cross and blue shield (my insurance) has to do all sorts of stuff to get each little thing approved as every little thing is disapproved until we all jump through a bunch of hoops. I am told this will continue to be the case and it makes this process very unpleasant to say the least.

I digress.

I am seeing my dr. tomorrow at 2 (Wed 30th). Please pray my doctor is involved in the conversation, hears my questions and will be active in answering the questions and helping with information needed. It's involved, what I want to discuss, but I need to know if they can get my nervous system out of hyper mode....and I really need this.....so badly.

Thank you for your prayers, everyone!!!

[burien1]

[Loop]

[mark s]

[ToledoDebbie]

Lisa, when are you getting the Radiofrequency ablation done?? My daughter suffered a severe back injury from an auto accident and she had a Full Fusion surgery with the Titanium rods/screws etc. It worked pretty well, but, after about 10 years, gravity takes over and the rods began to slip downward causing constant and debilitating pain. They can't repair the problem, because her nerves, etc. have grown around the Fusion site and there would be a high risk of paralysis. She has had the RFA done twice now and both times she got about 6 months of relief, before the nerves repair themselves! Her Doc indicated it is different for each person, but, she was very happy for those 6 months!!! Hope you have great results and some much deserved relief.

[GodsStudent]

Hi Debbie! Thanks so much for the encouraging news as to your family member. My dad has exactly the same issue as your daughter. I go Monday for trial 2 (1st trial went really well). As long as trial 2 goes well, I will get the ablation 2 weeks after that. This is on the left side only.

Then, I heal for 4 weeks and we will start the right side, same process....trial 1, wait 2 weeks, trial 2, wait 2 more weeks and then the ablation on the right side.

My doctor says the waiting is strictly due to insurance company policy and it frustrates him so bad. ....ha! tell me about frustration, because I have to just wait, for what seems no good reason...and the 2 trials when the 1st one was clear and obvious....why?
red tape galore on this fallen planet, LOL.

I am excited, though, about this.

After we finish all this, we move up the spine with additional work, because the RSD is also in my upper body, and hands are KILLING me. I push through the hand pain so that I can continue to write longwinded posts here on FP (smh!).....but I am so anxious to get rid of all of this nerve pain....I simply cannot wait.


Thank you, everyone, for your prayers. Love to you all. Lisa