I want to hear from you!!! A call to all Lymies

I was thinking this evening as I made a post about having extra pain and inflammation today because my mast cells are high (Lyme complication). It made me think that anyone who saw me earlier today would be confused by this post because I functioned well at work today, and of course I “looked fine”.

As any Lymie knows many of us do look fine and can even speak and act fine despite pain, fatigue, brain fog and the other myriad of symptoms that might be plaguing us. If I had a dime for every time I could have whined and complained and didn’t….. 

that said,  I would like to do a post featuring the faces of chronic Lyme (that’s where you come in); For anyone who is comfortable to share a headshot and a short bio (how long you’ve been sick, your symptoms and how you function and maybe some negativity you have experienced from others). I will leave that up to your discretion. 

Since WordPress won’t let you share photos in comments you can share your photos and stories with me on my Facebook Lyme page: My Color Is Lyme. You can post in comments where I will. E sharing this blog post, or message me.

I am looking forward to your responses to help raise awareness and understanding. 💚

Appointment Update

2 Days past my appointment on Monday and I am already feeling so much better. I woke up Tuesday morning with my face looking a lot less puffy and a much better sense of well-being. I no longer feel that my body is in crisis mode, which is a nice feeling.

Today, Wednesday, I will just say that…um, my kidneys are working again! This is such a huge relief.  What is tough is that there is still so much water retention. My socks leave dents in my ankles or calves at the end of the day, and I swear Eastern Washington is eying my butt right now with envy

thinking it has solved it’s drought problem….. Anybody know how I can make a donation? 😉

Anyway, I am hopeful as the layers unfold that there will be a days of complete health.

When The Fog Rolls In It’s Not The Weather…

So okay, brain fog isn’t too bad today but I thought the title was funny.
I took a day off work today for extra rest, which makes my second one in the last two weeks. It’s been a bit rough, but I must say this week was much better than last week with fatigue and other symptoms.

Today was weird because at about three in the afternoon I got hit with a fatigue tsunami and a brain fog chaser. I literally just lay in bed for a few hours and my tentative plans to maybe see a movie for the first time in months went out the window.

So here is something funny, two Lymies trying to make plans with each other;
I call my sister who just got back from her trip to Idaho for treatment with the same LLMD. Here is a rough outline of part of our conversation:

Me: so what do you think, you want to see Guardians Of The Galaxy tonight?

Her: Well I want to, but I can’t get the motivation to even get up and do anything.

Me: I totally understand, I wasn’t sure if you would feel up to it.

Her: are you really wanting to go?

Me: I want to too, but now I am feeling super tired, couldn’t even stay awake this afternoon. There’s no hurry, maybe tomorrow, or next week…

Her: Yes, maybe tomorrow. Although I don’t know how I’ll be feeling, so we’ll have to see.

Me: I can text you tomorrow and see if you are up to it, or if I’m up to it…

Her: okay.

Lol, this is how it is. I am looking forward to a day when I will have that thing, um…what is it called? That thing that makes people able to do stuff? Oh yes, energy. Not saying I haven’t gotten times when I’ve had pieces of it, but looking forward to the whole pie.

Oh and that brain fog thing? Spent 20 minutes today trying to think of the word “metaphor”. Had to punch a hole through a wall, pick a lock and crack a safe

And puppy pic, just because
😉

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Bowing The Knee To What We Don’t Know

Today is Monday, and although I am blessed not to work Mondays they usually aren’t “fun”.
A typical day off for me is waking up in the morning feeling “hungover”, groggy, swollen and puffy, heavy and achy usually with a headache. Do I drink? No. But with the MTHFR defect and Lyme I think everything I take into my body both food and meds just linger longer than they would in a normal person….That plus the die off. So in a way I am poisoned and toxic and have a hangover of a different variety.
So first step (besides letting the dog out) is to get my morning coffee that activates some of the brain cells that are shut off, drink a little beet juice and take some Advil, maybe eat something depending on how I feel, spend some time drinking my coffee and catching up with stuff on my laptop, do a 1 hour infrared sauna session, followed by an Epsom salt bath. By this time I have probably had a bite to eat and taken half of my massive amount of morning pills, I will take the rest when I feel I can handle it. The sauna and bath do help to get rid of some of the toxic feeling. By the time I do eat breakfast it is more of a brunch and I won’t have an official lunch and half the day is gone.
The rest of the day is spend not doing too much….maybe venture out to the grocery store later in the afternoon, etc. But mostly it is me, the tv, fatigue and a small orange dog.

What is good is that God has brought me out of the depression that living this way for years did to me. (That has been quite a process). At least now I do believe that healing is imminent, I just have to carry on with grace.
One thing that God brought to my mind this morning as I was pondering my unknown future, my singleness and loneliness and the fact that I feel I am running out of time is “bowing the knee to what I don’t know”. This really struck me in a profound way. The concept is nothing new to me but sometimes God brings things to our hearts in fresh ways.
What this means to me is that it is in the unknown that God can work in His sovereignty and in His plans for us. This is the place that our knowledge ends and His is infinite. He can see our lives beginning to end and His plans cannot be thwarted and our hardships are not only no surprise to Him but rather they are interwoven in His design for our good and His glory. Our minds can only grasp so much and we cannot see what God is doing.

So very many years ago I asked Him for the miraculous, for things extraordinary, things in my life that would be jaw-dropping amazing and glorifying to Him. Should I ever doubt that even that prayer came from the heart of God? I think not. The only thing was I didn’t ask for specifics, just miracles and God knows exactly how these things will come to pass.
That is why it crept into my mind today to bow my knee to the unknown, to the place where my vision ends and into the space where God is working to do far beyond what I can think or hope for….

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CURE For Lyme? Yeah I Think So

Good afternoon my fellow Lymies. I want to update you all on my appointment with Dr Smith in Idaho.

After my initial visit today he found….well a lot.
Borellia in: blood, spleen, lymphatic system, tooth canals.
Babesia in: blood and spleen
Bartonella in: brain, blood, small intestine, “etc”
Lyme Virus “A” in: joints
Virus in Liver
Fungal infection in: Bronchial/lungs
Protozoa in: small intestine and pancreas
Parasites in: large intestine
Also Mercury.

Nutritional deficiencies: iron, zinc, acetylcholine, copper.

Now for the “too good to be true” part. Dr Smith does his treatments with magnetic therapy. I had my first treatment this morning, will have my next one this afternoon, and four more over the next two days. I will keep on the new supplements regimen plus a few things I was already taking from my other doctors that he said were good. I will have about 6 weeks of die-off where I probably won’t be feeling so hot, then in about 3 months he said I should feel pretty good! I will see him again in 3 months.

It is good that my other docs have done remarkable work with my sister and I so far, but according to this doc long-term antibiotics and herbal “antibiotics” can only do so much and leaves some virus and bacteria in some areas. Hence why we have always said there is no “cure” for Lyme but something more in the way of remission.

Now if I had not seen Lyme sufferers get better with my own eyes who had previously been through “conventional” treatment I would be very skeptical, but I have. Right now I have more hope for full health than I have in…, well forever.
Here’s hoping!

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A Chance on a new LLMD, a Vacation and Hope

Well my sojourners it is time to share that I have been planning a little trip; Tomorrow I embark on a road trip to Coeur d’Alene Idaho to see a new LLMD to see if we can finally clear up the rest of this Lyme stuff, and/or biotoxic illness/chemical exposure/heavy metals….all of the afore mentioned, whatever…. We will see.

It is rather interesting because I have heard of Dr Smith several times over the last year and one of my dearest friends who has/had Lyme and was incredibly ill, went to see him in December (with several subsequent visits) and she is doing amazing! Basically she went from partially bed-ridden with heart issues and mild seizures to…….Normal! It is quite remarkable. Another man and mutually acquaintance of both of ours also saw this doctor and is doing well. And now just 10 days ago one of my family members who has been having unexplained health issues for years went to see this doctor and was diagnosed and started treatment for Lyme (she previously had a negative Western Blot). So she has begun a journey to healing.

It took me a long time to make the decision to see this doctor, partly because I have immense faith in my current LLMD here in Seattle, and partially because any treatment for Lyme that does not take at least 2-4 years not only seems too good to be true, but also goes against all the evidence and research regarding chronic Lyme. So when something seems too good to be true and yet you see results right before your eyes you must adjust your thinking and open your mind to new possibilities.

But isn’t it always this way with any kind of medical breakthrough? The Western Medicine we have all been raised on is so filled with falsehoods, with a philosophy of “don’t cure it just throw a dangerous drug at it”, and yet we do not question “the truth” until we see evidence otherwise. After all, almost every Western Medical doctor would tell you that Chronic Lyme is not even real and yet the science and proof is right there for anyone to find.

I do want to say that I still believe I have a great LLMD here and he has done remarkable work with both my sister and I, we are so much better than we were two years ago. He continues to help Lyme patients here and even from other states and overseas. But I want FULL health and to attain that 25% or so of me that is missing, the pieces that are always too tired, in pain, swollen and inflamed, the piece of my mind I know is still hiding from me…. If there is hope that full health and life is within my grasp I will chase it down.
I’ll let you know how it goes.

Dr Tony Smith Lyme Stop

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