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Details of My Appointment with my Mold and Mast Cell Doctor

 


Yesterday was my appointment with my Mold and Mast Cell doctor. I posted a video about it on Facebook but it was not as articulate and specific as I like to be. If you want to watch it, you can watch it here.

I thought it would be helpful to type out the specifics for myself and anyone else who was interested. I know when I first started on this journey, I was dependent on those who had gone before me in this journey. I thought I would do the same.

First, my doctor is in Franklin, TN. His name is Dr. Eric Potter. He is a Board Certified Internal Medicine doctor and Pediatrician and is a Functional Medicine Doctor. He works with people with chronic illness but his specialty is Mold and Mast Cell. One of my greatest regrets is not finding him sooner. That being said, God's timing is perfect and I am grateful to have him as a doctor now.

The way Dr. Potter works is that you come in for an initial appointment. This appointment is long (I believe I was there for 2.5-3 hours.) They want a full background going back to childhood. From this appointment, and any labs you may already have, they decide what labs they want to order. Those labs will take 6-8 weeks to come in so you won't come back for at least that long. He was really booked out when I went so my follow appointment was 3 months out. That appointment was yesterday.

I have learned to record these long appointments so that I can refer back to them. Yesterday, Dr. Potter and I spoke for 1 hour and 27 minutes. I thought I would pull up each lab that he referenced and explained for anyone who wants to understand what mold does to the body.



My white count is pretty much normal except I did have some Eosinophils which are allergy cells so there is a question of whether there is an allergic aspect to this as well. Allergy cells can come from allergies to anything to parasites as another cause. It is possibly just the mold. You can have mold toxicity, mold allergy and  mold infection. We will recheck this in the near future now that I am out of the mold. The doctor is hopeful that this is just going to disappear on its own now that we're out of the mold.



Next we looked at my mycoplasma. You can have chronic infections with mycoplasma as well. I am in the middle ground. Dr. Potter thinks that because this is under 300, it's probably not active so right now we're just going to watch that. He thinks this is likely a past infection that is not active.




Next we looked at my thyroid. TSH is what the pituitary tells the thyroid to make T4. The T4 gets converted into T3 and mine is good so in this case, all of the other numbers look good but the TSH is a little high. This is a test that we want to repeat. The mold could have caused this so we will need to see what the TSH is doing now that I'm out. The thyroid antibodies are normal so we know that I don't have Hashimoto's. My iodine which impacts my thyroid is low so we will need to start iodine. If I could handle seaweed or sea kelp, that would be some great foods to raise my iodine naturally. Unfortunately, with Mast Cell Activation Syndrome, I can't have either. These trigger histamine. More on that later.

Because they knew that I had had reactions to mold, they were also looking at my VIP which confirmed I had very little active Vasoactive intestinal peptide. It's first job is detox. This confirms biotoxin illness. At some point we'll retest when C4a and TGF Beta 1 are better to see if I need a VIP nasal spray. 

My vitamin D levels are so so. A conventional doctor would think it was ok but Functional doctors have found that it needs to be closer to 50-60 so we will be adding vitamin d as well.


The next thing was the Epstein Barr Early Antigen. Some tests just tell you if you've ever had it, but, when have this one elevated, it's more concerning that it's active. This is a viral infection. We will need a therapy protocol after we do detox. Treating now will not help.  We will have to wait for my immune system to be able to do its job. For now, we will use Lysine for suppression. This won't kill it. It keeps it from replicating and growing as fast.


We looked at MMP9. He said when this is elevated about 330, it indicated a biotoxin illness. I was at 475 in September. 475 is a little up but not terrible. I would be curious what it was by the time I left the house last month. That being said, because of all the work that Envita did last year, I believe it's much lower than it was.

The main therapy for lowering this number is detox, but also fish oils. However, again because of Mast Cell, I can't take fish oils. We will wait until the Mast Cell is controlled to treat it. He said detox is number one, omega 3s will be number two.




Next, we looked at the biotoxins markers according to the Shoemaker protocol. These continue to point to biotoxin illness. We will recheck those later to see if we can get them back to normal.

Next, we looked at my mycotoxin test.




This is a urine test and it looks to see what's being excreted by your body. As you can see, I don't really have any mycotoxins that are being excreted. This means one of three things.

1. I don't have mold in my body or,

2. My body is so depleted that it can't detox from the mold so it's holding on to it.

3. There is another biotoxin such as Bartonella is affecting me. We have tested extensively for Lyme but Bartonella is hard to detect.

However, we know that I was being exposed to mold because we found it. It is concerning that right now it can't dump it. Last year, when I went to Envita, I had a very high Zearalenone but I had been going to a place in Knoxville to get Glutathione IV's which probably enabled me to dump some of the toxins.


He said it will be interesting to see what's actually left in my body once it starts to detox again. Dr. Potter said that one reason that he no longer uses GPL mycotoxin test is that there are some mycotoxins that are not listed on there. We only did it this time because that's what Envita did and he wanted a side by side comparison. He may use the one by Vibrant Wellness next time.

We also looked at my MARCONS.


MARCONS is a bacteria that is resistant to multiple antibiotics that is deep in the sinuses. It doesn't cause as much sinusitis type symptoms but it can cause a lot of neurological effects. It messes with sleep, it can cause psychiatric symptoms. We try to get rid of that, but we need to do it after we've done some of the detox. You can spray stuff up your nose but you're probably not going to get rid of it until you get rid of what's suppressing your immune system.

As far as detox, we are starting very slow because of the reactions that I have had. Right now I am on 1 binder (GI Detox) a day. We are going to start working up to 4.
He asked how I had done on Glutathione in the past. Last year, before I went to Envita, I started getting Glutathione IV's every week at first, then every other week. At first, I did well, however, in time I started having asthma attacks.

When I went to Envita, they tried to give me Glutathione in my permacath. The reaction was severe. I had a severe asthma attack. They had to give me IV Benedryl, IV steriods, a breathing treatment and then oxygen.

Dr. Potter said it's a question of whether I was reacting to the Glutathione, or the toxins that it was pulling out. He suspects the latter. However, because it hasn't gone well in the past, we aren't going to start me on it right away. We're going to start with Milk Thistle, a gentle detox support for your liver. When we do start with Glutathione, we will start with the toothpick method. I will stick a toothpick in the Glutathione, stick it on my tongue, and that will be my beginning dose.

What does healthy detox look like?




This is one of the questions that I asked my doctor. I have had lots of bad experiences so I wanted a gauge of what I should be experiencing.

He said, "It's not fun. There are some people who aren't very sick who don't experience much, but it's usually a very achy, yucky and tired feeling. Now, you've done a lot already (Envita) so detox shouldn't be miserable. Now, I can make it horrible for anyone if I start off full throttle, but just like you wouldn't get in the car, and all the sudden push the gas down to 60 mph, you shouldn't do that with detox. With most patients I can start off at 20 mph. With you, I might be able to start at 10. The important thing is just that we make progress."

He went on, "You have to get the gut out of mold or whatever is causing the problem, as they tolerate the slow detox, you start slowly speeding them up as they can tolerate it. The mast cell is the pain in the butt. It causes probably more disruption to the speed of detox than anything else because you really have to control it because if you try to detox too fast and the mast cell is not under control, it just won't work. The person feels miserable and can't tolerate it. So our goal is to go slow, pick up speed, as you're getting more toxins out the Mast Cell settles down and you can pick up the speed."


Next, we discussed my Organic Acids Test. This is an extremely complicated test. Thankfully, I have a doctor who's smart enough to understand it and explain it to me.

This is my OAT test from last December at Envita:


The first part looks at yeast and fungal markers. Last year, they were fairly high. This is actually one of the things that Dr. Poteet at Envita pointed out to me.

This year, they look normal. This is a huge praise because Dr. Potter said that yeast can make Mast Cell MUCH worse. We don't want anything making it worse!



Next we look at bacterial markers. These show gut dysbiosis. Last year, my hippuric acid was VERY high.



This year, it's normal.


Yay for improvement!!! He said that right now my gut actually looks pretty good- especially considering last time I had the yeast markers and the extremely high Hippuric acid.

Next we look at the mitochondrial cycle.



He said, "Think of those old movies with an assembly line of chocolate. When you didn't go fast enough, the chocolate would pile up behind it."


"With these tests we're watching your metabolism. If there's a high level, that means there's a step along the way that's not working. If there's a low level, it means something is backed up and not getting past it."

"On your past one, your lactic acid was 50, just over what it should be, now it's only 10. So last year, I would imagine you had a lot of exhaustion and weakness."

"The mitochondrial markers, you have high Malic and high 2-Oxyglutaric and low Aconitic. Your energy cycle still isn't working at full speed."

When we look for why that might be happening, he says this can be a problem with B vitamins, but my B vitamin markers look good. He said we can either have something in the way- an obstacle. Or we could have a deficiency. Right now he thinks it is the mold. Detoxing from the mold toxins should help improve this.

He also noticed deficiencies of Vitamin C (despite taking 1,000 mg a day) and likely copper. We are testing the copper in the next couple of weeks and I am to start upping my vitamin C to 2,000 mg. He said I may have to up it more than that. It appears I am using it up faster than I can take it in. Because most vitamin C triggers mast cell, I am having to switch the type I take and start on a low histamine option.  









Next, my body isn't really burning fats. This can affect mental health- brain fog. He is starting me on carnitine because this will help my brain to absorb fats better. He said some people find that they feel sharper with this.




My NAC, which your body uses to make glutathione, is on the low end. He said that if he was giving me glutathione, he wouldn't be too concerned. He said that if we can't add glutathione within 2-3 weeks, we may start with NAC so that my body can start making it on its own.



My glutathione is also low.



Dr. Potter said, "The glutathione is low. It might make you say, 'Well, why in the heck am I having so much trouble with it?' You would think your body would do well with it. I think you just need to detox. This also (the low glutathione) may also explain why no mold toxins are coming out in urine as you may not be able to excrete well. This may explain why your mycotoxin test looks better than it actually is. Mycotoxins can actually shut down glutathione production. They kind of shut the door on getting rid of themselves."


Big Picture

Epstein Barr Viral Infection
Mast Cell triggered by Mold
Not ruling Bartonella completely out but if I keep getting better, we won't test for it.
MARCONS
A few vitamin issues
Thyroid off
 
The doctor said if you narrowed it down to 2 big issues, 
"It's mold and mast cell."


I asked him one question that I really wanted to know:

Does the mast cell go away when you treat the mold?

He said, "It lessens. The more mold you get out, the more it calms down. Some people do have mild symptoms off and on. It doesn't always go away 100%. I'll be honest about that. It definitely does get better. Some people get down to where it's just very minimal and as long as they don't do anything crazy, they don't have any problems with it. It's not a guaranteed 100% improvement."

I told him that the house that originally made me sick, we lived in for 12 years.

He said, "Yeah. You were exposed to a lot."

I told him that I thought it was interesting that he had a video on Obsessive Compulsive Disorder and Mold Toxicity. We moved into that house in June of 2004. In January of 2005 I was diagnosed with Obsessive Compulsive Disorder.

"Yeah," he said.
"It messes with people's brains."

He recommended that I start back up with limbic training (I had backed off in the past few weeks.)

I want to cover one more thing before I close. My mom asked me yesterday to explain Mast Cell. It's a very complex syndrome, but I explained it as, 
"You're allergic to life."

If you'd like to read more about it, go here
and here.


I understand that this blog post is extremely long and complex. I shared all I did for a few reasons:

1. We have had a great support system in our friends and family. A lot of people want to follow and know what's going on.
2. When I started down this journey 4 years and 4 months ago, I had NO idea how long and arduous this journey would be. I wish I had had a post like this to give me some guidance at what I was looking at.
3. Many people have friends and family who don't believe them. I do too. While I don't expect this post to convince anyone who doesn't already believe, I do want to show those who want to know JUST how many systems are affected by mold. Depending on how long you've been sick, it may not be a short recovery as you have to support so many different systems in your body on the road to recovery.

Despite all of this, I am incredibly blessed. God has been good and faithful to us. Please continue to keep us in your prayers.

In Christ,
Megan




























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