One Week Post Flare- What Doctor Am I Seeing Next?

Thursday, August 13, 2020

 



Today makes one week since my return of symptoms. If you missed that, you can read it here.

I have been getting some questions, so I thought I would post an update.

Last Friday (after the flare on Thursday), I had more ketamine. I've written about ketamine extensively before. It's not a cure. It won't fix what's wrong with me, but it gives me time as I work on the next steps.

Since the ketamine, I've slowly been gaining energy and movement. My brain and body had a major workout from the tremors so I am just feeling over the past couple of days that the fog has lifted. 

I've had several friends and family ask how I'm doing. Honestly, I think I'm doing pretty well for what has happened. I have learned to put a lot of tools in my toolkit for set backs. I am constantly working on setting my mind on what is 

..."true, honorable, just, pure, lovely, what is commendable, excellent and praiseworthy." Phil 4:8

This doesn't mean I don't feel or acknowledge my feelings. I have broken down and cried more than once since this happened. Rather, I have striven not to let my feelings have the final word. When it all seems too overwhelming, I pull out a "power up" as Dr. Jane McGonigal talks about in her book, Superbetter.

I keep a list of things that make me smile, help me to focus, help me to feel energized or help me relax and I use them... often, multiple times a day.

So, considering what has happened, I think I'm doing fairly well.

I am going to try to keep this blog fairly short but I wanted to answer another question that I have gotten:


What kind of doctor are you going to?

A couple of weeks ago I realized that not only was I not bouncing back, I seemed to be declining further. I was continuing to get weaker and have more and more histamine reactions. My doctor at Envita shared that he believed that I was dealing with Mast Cell Activation Syndrome

Unfortunately, that often goes hand and hand with mold illness and it's pretty complex. I thought it would be wise to find a Mast Cell specialist since mast cell often can need medication and can get bad enough for anaphylaxis. 

I found 2 doctors in Tennessee who were specialists. One in Knoxville and one in Nashville. The one in Nashville really caught my attention. He is an MD who graduated from Vanderbilt who also operates as a functional medicine doctor.

His specialties are mold, lyme, genetics and mast cell.

Minus the lyme, these have all been issues for me.

Someone asked me this question yesterday so I thought I would also answer it:


What is a functional medicine doctor?


A standard M.D. might look at me and say, "You have Multiple Sclerosis. These are the different medications that we can try to stop the autoimmune attack."

A functional medicine doctor will say, "Yeah, you have M.S., but why? What underlying toxins and infections have triggered it?"

 For instance, EBV virus has been found in the lesions of M.S. patients causing some to wonder if it's one of the triggers.

I have the EBV virus.

So do I have M.S?

I don't know. It sure does look a lot like it. The one thing that has stumped me and my doctor at Envita is that I have no pain which is virtually unheard of in secondary progressive M.S.


The specialist in Nashville will use medications, supplements, and diet to help me with whatever he finds in his labs. This is part of the reason that I chose this doctor.

Here's another:

At least two weeks before I come, their entire staff will study my case to become familiar with it. I have had to send in extensive paperwork and labs. The office explained to me that sometimes someone moves to Nashville/Franklin and calls because they want a new functional medicine doctor.

The office will explain,

"That's not what we do. Let us give you the name of someone."

This office just works with patients like me. You agree to work with them for a minimum of 7-9 months while they work to get your disease under control and, if possible, start remission.

I was told that this doctor has seen somewhere in the neighborhood of 300-400 mast cell patients in the past 5 years.

At this point, I need someone with that level of expertise.


We have had people ask what they can do to help.

Honestly, pray.

Here are the things you can be praying for.


1. Steve- he is absolutely exhausted. His stress levels were just starting to drop and then this happened.

2. Emma- when I am too weak, Emma is the one who has to cook and clean. The boys do help with the cleaning as well. 

3. The boys. This has been hard on all of them. Isaac has gotten more protective of me and started putting his arm around me a lot. You can see it in this picture. It has really scared Elijah. I am working to downplay this with them as much as possible.


4. My appointment Sept 10th. I am supposed to lay out as much as I can to go in and talk to the doctor about. I'm not going to lie. This overwhelms me. So much has happened just in the past year alone. Pray that I will remember to share the most important things.


Thank you to everyone who is praying.


In Christ,

Megan


A Relapse in Symptoms and Next Steps

Friday, August 7, 2020

 


I'm going to be honest. This is a hard post to write.

Over the past 4-5 weeks, my health has been struggling.

It started with what we now know is a Mast Cell flare up.

About 6 weeks ago, I inadvertently loaded my diet with high histamine foods. After this, I proceeded to have miserable allergic reactions. Around this time I traveled back to see family in Knoxville and overexerted myself physically. 

I didn't do any of these things intentionally. I am still trying to figure out what my physical limits are.

My doctor at Envita told me that he thought we were dealing with Mast Cell issues. We tried some natural treatments. For some people, those are enough.

For me, they did nothing.

I started developing more allergies. Now I can't eat beef (I now know that is a high histamine food). I try to make the best of these situations. I love cooking so I started making some yummy low histamine foods like this low histamine pizza.


I started trying to see how much variety that I can add into my diet. I was striving to pace myself, to not stand too long, to work on retraining my limbic system every day (a lot of people have found that this part of their brain is damaged by mold).

And I kept getting worse. And weaker.

Then, I accidentally ate another high histamine food. Twice.
Then, I got bitten by a bunch of red ants and had an allergic reaction to that.

Yesterday morning, I woke up like this.


My right leg turned in and went. My right hand curled up and started to tremor to the point of cramping. Then it spread to my left hand. Then my thighs.
My teeth started chattering but I wasn't cold.



This went on for about 30 minutes. After it stopped, I couldn't walk at all.

I called Steve home from work. We had to make some hard decisions.

Going to the hospital where I live was absolutely out.
We could drive to Knoxville and go to UT Medical Center. Been there. Done that.
Went twice last year. They said I had a migraine and muscle weakness and sent me home.
Or, we could go to Vanderbilt Medical Center in Nashville. 
We're halfway between both of those hospitals.
If we went to Vanderbilt they'd likely do MRI, Spinal Tap, etc.

The problem is that the CDC doesn't even recognize mold illness. There are a small handful of doctors who know how to treat Mast Cell and, at this point, we think the Mast Cells are attacking my brain and central nervous system. 

Before this nervous system attack, I had looked for Mast Cell Specialists in Tennessee. I found two. One in Knoxville and one in Nashville.
The one in Nashville specializes in Mold Illness, Mast Cell and Genetics. My three big issues.
But he's not cheap and I thought I had time to wait a bit.

Yesterday, we realized that was not the case.
 We decided to go ahead and book another ketamine treatment and book the appointment in Nashville.

Mast Cell causes major inflammation and can attack many organs throughout the body. Ketamine is an anti- inflammatory. We think that's why it was helping me last year during the attacks. It was calming down the inflammation in my brain.

The specialist in Nashville is booked out for 4 weeks. My appointment is September 10th. The ketamine lasts in your system for up to 8 weeks.

Tonight, I am walking normally. I hope to keep that. Our hopes and prayers are that the ketamine will keep working while we wait to get in with the specialist in Nashville. Will you pray with us?

In Christ,

Megan