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This Week: Doctors, Doctors, Doctors

 



It's Tuesday afternoon and we've already had 3 doctor appointments this week and we're just getting started. Reese had an appointment yesterday so I'll start with him.

Reese has been struggling a bit for the past couple of weeks and is definitely in a mast cell flare. Thankfully, it isn't one of his worst. Reese just turned 13. I can't believe it. The poor kid has never really known life without this disease but I'm eager to see him recover. He has a good doctor and we have 2 diagnoses- that's a great start.

The doctor said from Reese's last labs that he is mildly immune suppressed. If some of his numbers don't come up in the next few months, we are going to be doing more testing to see if he has chronic Lyme disease. It could be that he has this on top of the mold toxicity and mast cell activation but the doctor isn't willing to commit to expensive testing for that just yet.

Reese is very deficient in a lot of fats and nutrients. Despite a high fat diet already, he's not really absorbing enough and the doctor said that he needs lots of saturated fats. He said that it wouldn't be a bad idea to cook his food in lard. So, I will be getting that from the farmer this weekend. We're also supposed to up his protein, especially beef, drastically. The nutritionist is supposed to call me Friday to tell me exactly how much protein they want Reese to have. Any one who has seen how much my boys eat would be floored that Reese could need more but that's what his labs show, so that's what we're doing.

We are going to start adding in more mast cell stabilizers for Reese. He's already on 1500 mg of quercetin a day but it's apparent that he needs more.

Right now, these are our priorities with Reese.
Please continue to keep him in your prayers.

Last Friday I had an appointment with Dr. Potter because of what is currently happening. Dr. Potter said there are only 2 things that can cause episodes like these to come and go so quickly:

1. Mast Cell Activation and
2. Limbic Dysfunction

My symptoms can come and go within days, minutes and hours. Because of the mold toxicity, I have both Mast Cell Activation and Limbic Dysfunction.

This is why it has been so hard to get a diagnosis. I am grateful that we have a doctor who knows what to look for.






Today I had two appointments. One was with my psychiatrist to update her on what is happening. She has been one of my biggest encouragers through this. The ketamine clinic originally sent me to this psychiatrist in 2019. She has a double doctorate and writes research papers. She studies the brain and is fascinated by it.

Today I told her what Dr. Potter has determined is going on:

I am having cerebellar effects from histamine.

She replied,

"Oh my gosh! That makes so much sense!"

This is why it doesn't show up on MRIs. This is why blood work shows no evidence of an autoimmune disease.

The Mast Cell has triggered one organ system after another. My thyroid has been too high, too low (it's actually too low again). My blood sugar can dip suddenly, or like it did the other day, shoot up to 195, make me really sick, then plummet to 75 in minutes. These mast cell issues are from the mold. As we detox the mold (a painfully slow process because of the mast cell activation, a lot of this will calm down.) My doctor said I will probably be on a low dose antihistamine the rest of my life but should have a fairly normal life if I don't 
"do anything crazy."

Here are my prayer requests:

1. Financially, this is killing us. As I shared in my last blog, the cost of supplements and medications alone is costing us about $1300 a month. We have started the process of applying for disability. We had held back because we know it is difficult to get coverage for mast cell, impossible for mold illness. Unfortunately, this flare has also flared up the PTSD which has been documented by my doctors. They both agreed today that it was time to go that route for diability.

2. I have ketamine tomorrow. This tends to help me start gaining movement again and it also helps with the ptsd.

3. We are still trying to figure out what level of medication I need to be on for Mast Cell. This is a long and personalized process. The doctor said that his priority right now isn't detox, it's getting this under control. I am working up to a high dose of the latest antihistamine. On top of this, if I haven't improved enough about a week after ketamine, we are adding in low dose naltrexone. This has been used in a lot of autoimmune disease to bring it into remission. For Mast Cell, they are also seeing a lot of success. It seems it calms down the immune system and inflammation.

4. A home. We've been in this RV for 4 months now and it's wearing us down. Right now we have no money and no prospects for a home. That's completely in the Lord's hands and it's where we have to keep leaving it.

Thank you for your continued prayers.

In Christ,

Megan

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