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. 💚

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Magic Beans

Jumping right back into work without rest after my trip plus having all my edema and systemic reactions has been terribly fatiguing. Here I am needing to be super strict with my diet again and needing to cleanse, restore and calm down histamine and mast cell stuff, and/or iGg, and yet fatigue at work has been so bad that 24oz matcha lattes, energy drinks and regular tea aren’t helping to peel my face off my desk.

Even though I’m iGg reactive to both coffee and chocolate I have again been relying on “magic beans” this week just to get me through. Alas riding the wake of wakefulness (ha ha) are swelling, tingling and pain 😦   I can also feel adrenal fatigue from being shot up with so much caffeine.

Hopefully I can get back on track soon and let the only magic beans in my life be the beanstock growing kind.

cacao and coffee

Puff And Circumstance

Today is my first day back to work after my dream vacation (first one in 16 years) to Disneyland (will do a Disneyland post soon). I had decided I was going to be really strict and careful with my diet and packed a ton of food, like organic chicken and cooked broccoli and yams. The first couple days I did pretty well, but then you know….Disneyland.

First, we did not get back to the hotel for meals like I thought we would and just ended up being in the park a lot and even the snack food I did bring was not entirely practical, and one can’t survive in 90+ degree weather on dried fruit, zucchini chips and baby food.

I ended up having my first Jamba juice, several times….. Because of messed up schedule and lack of sleep I ended up having coffee a few times. I must admit ice cream happened a couple times and for a big cheat I had a Monte Cristo in Cafe Orleans for my sister’s birthday dinner. On our last day I also had some food at In and Out Burger because I had never been there before.

It was SO hard to make food decisions because I was torn between wanting to be strict and good to my body and just wanting to let go a little and enjoy vacation. All in all after tallying 5 1/2 days I did about 70% good with diet.

Why make this post all about food do you ask? Well, because I think my body’s reaction right now has a lot to do with autoimmune reaction to food and not much to do with days of walking and fatigue.

Ouch:

foot2foot

It’s Not Over

I got asked an interesting question today… Do you think you are over the Lyme? Well I honestly don’t know. I have come SO far from where I was a year ago, and a year ago I was much better than six months before that. Of course few people who have Lyme are dealing with just Lyme, whether it be co-infections like Bartonella, heavy metals…..what have you. For me besides the Lyme it has been chemical toxicity, long term mold exposure, Leaky Gut, Systemic Candida, heavy metals, and MTHFR and one other genetic defect that prevents all this gunk from leaving my body…and the havoc all the above have caused along with way. 

The last couple weeks I have had a huge amount of physical and emotional stress and my body is just not recovering. There is deep fatigue that no amount of rest seems to alleviate. I know that there are multiple factors here because last Monday my doctor also tested me positive for some kind of new chemical exposure, and I was also having a massive histamine reaction that was causing a good deal of pain. And besides that I had reached the end of my RX for candida and it has been flaring right back up again. Sigh.

So with all this “stuff” I really have no idea what part any spirochetes Imageplay in all this. I am about 20 months into treatment and I know there is huge improvement, so I think the little guys are mostly dead. But they do cycle (every 7 months?) I believe, so it is a matter of being in treatment long enough to kill all the generations, and of course I don’t know when these cycles are happening but stress on the body can make a herxeimer reaction worse.

Anyway, at the end of the day the answer to the question is “I don’t know, we shall see”. Here is a link to an article by my LLMD on how to determine the end of treatment: (just “X” out of the pop up)

http://www.treatlyme.net/treat-lyme-book/finished.html