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. 💚

Biography And Treatment Update

Hi my name is Jennifer, and I am not sure how long I have had Lyme because my and my family’s health history is rather complicated;

In 1990 when I was 11 and my sister was 9 we moved into a house on 5 acre property, it was a dream to have lots of animals and acreage. There were some great memories living there, but it ended up being a disaster. I cannot remember the time frames of everything but I will just do a quick overview. After a time our family started having various health issues ranging from chronic fatigue, depression and asthma to chronic sinus infections and a lot of other stuff. It took years but we eventually discovered that there were 13 different kinds of mold growing in the house including black mold. Also we were on a well and we discovered that there was suspected chemical dumping in the ground.

In 1996 after being nearly bankrupted by medical bills and with my mom going through chemo, my parents sold the house as a tear down.
Fast forward, (there were a lot of years in between and too much to go into) although some health issues got better after leaving the moldy house there were a lot that still lingered. Personally I had a two year period around 2003-2005 where I cleaned up my diet got in shape and was doing fairly ok. I don’t think I realized at the time that some cognitive things I dealt with and other health things weren’t normal, it was just “me”, because I was functioning at what I would consider to be a normal level. But right at the end of 2005 I had a period of stress and started having a lot more GI issues. A lot tumbled downhill after that; systemic inflammation, food intolerances, fatigue, brain fog (insert lots of Lymie symptoms here). I did the usual rounds with the doctors, was told a lot of different things, I had IBS, fibromyalgia……nothing at all. I had tests and blood work and MD’s never found anything.
I Finally found a doctor in 2010 that did muscle testing and nutritional therapy that was able to help me with a lot that was going on by supporting organ functions and detox pathways, etc. After two years with her my experience is that she gave me a lot of help where I feel I might have literally died without her intervention, and yet in some ways treating my body was like her trying to patch holes in a leaky boat that kept springing new leaks. During my care with her she also ran  a lot of blood work and tests revealing things like Leaky Gut, MTHFR defect, high PM cortisol, etc. My doctor had been concluding that we were probably dealing with an autoimmune disease and sent me to an LLMD in Seattle. (I must note that my sister was also on a parallel journey with me). Long story short got diagnosed with Lyme and went through two years of treatment with antibiotics and herbal antibiotics. At the end of 2012 during the beginning of die off I was bedridden for 3 months and this was probably the darkest period of my life.

I would have to say that with initial treatment I got maybe 50%-60% better and really had a very sharp LLMD that also understood treating Candida and all the other stuff that was going on. That said I  had  a lot of symptoms that just wouldn’t go away and still wasn’t really living due to fatigue, body pain, neurological issues and other things. I have kept hitting brick walls over these long years with treatment.

I heard about Dr Smith late last year from a dear friend who is also a chronic Lyme sufferer and was in a worse place than me with her health. She had also been treated by a Seattle LLMD although a different one than myself and was not doing well. She went to go see Dr Smith late 2013 and has had nothing less than miraculous results. By chance (providence) I met several other mutual friends online who had also seen Dr Smith and were getting better.

I went for my first appointment with Dr Smith June 30th 2014 and had Lyme treatment in consecutive days. Despite the fact that I had been receiving treatment for 2 years Dr Smith found Borrelia, Bartonella, Babesia, Lyme virus A, Lyme virus B, a liver virus and parasites. There was both some shock and relief in the diagnosis because in my head I had thought I must be mostly over the Lyme, but I knew I was stil struggling so something must be wrong, and I had wondered “what now?”

Week 2-3 post treatment were the worst with the die off with chest pain and hard heartbeat, vertigo, mini seizures, panic attacks, severe brain fog and confusion, worse systemic inflammation… Toward the end of week 5 things started to ease up and I felt back to my normal sick self. Almost 2 months later I went back for a second appointment with Dr Smith on August 25th for some “touch ups” due to some kidney and liver problems, he ended up finding a few viral infections. Literally the next day after treatment I already felt better.

As of today September 27th 2014 I am approaching 3 months post treatment and I am doing pretty well. My mind is clearer than it has ever been to my recollection, I am not dealing with the brain fog, dyslexia, word recollection problems, etc. My energy is immensely improved and I have been getting on my bike a few times a week. I also went to my first yoga class in years and made it about 2/3 of the way through before surrendering to Child’s Pose. I have also been back to the gym a couple times and done 20 minute sessions on the elliptical. These are all huge steps compared to what my activity level has been for years. Also I have been more social and seeing my friends again.
I have a little ways to go with all this but I am hopeful that I may in the near future have good health for the first time in my adult life.

It is too much to go into but my sister is also in treatment with Dr Smith and both my parents will start their Lyme treatment with Dr Smith in October 2014  (yes all four of us!) having been diagnosed by Dr Smith as having Lyme during my first visit to Idaho.

Biofilms. If you don’t know what they are you will never get better

I saw a post on Facebook today in a Lyme community, It was from someone that had just read something about biofilms and wondered if they existed. This is a terrifying question from a chronic Lyme sufferer because if they are not being treated for them they will never get better.

Here are some essential links with info on Lyme Biofilms:

http://www.treatlyme.net/articles/2011/12/2/biofilms-gated-communities.html

http://www.treatlyme.net/lyme-disease-supplement-blog/2011/10/31/banderol-and-samento.html

http://www.huffingtonpost.com/c-m-rubin/the-global-search-for-edu_b_3916360.html

http://www.lymediseaseneogen.com/lyme-disease-elimination-program/

http://www.tiredoflyme.com/biofilm.html#.UxApP4XKTIU

 

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A Little Help From Our Friends

Blessedly my sister Holly and I are doing better, but the Lyme care must continue until completion. Holly is still doing her antibiotic injections while I continue to take them orally. We are both still taking a lot of support for liver, thyroid, adrenals, kidneys…. and all the other organs and systems that need support to make it through this journey. It remains vastly expensive and we are looking to being at the end of funds. Holly and I are both blessed to owe our very lives to our amazing doctors, but mostly to our parents Paul and Joanne. The financial toll has been huge over the last year and a half, treatment for both of us has been over 100,000, and in a few months my sister and I will not be able to continue any treatment that will be needed. If you could please pass on and share this post it would be much appreciated. And if you are able to help support us even in a small amount we would be very grateful.

http://www.gofundme.com/1z5sj8

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Better Days 🙂

 

 

Have your Psychiatrist Shake Hands With Your Gastroenterologist…huh?

This article is a very interesting read about the connection between your digestive health and psychiatric disorders. Are they all related? Well no of course not, but it is interesting. After all, those reading this with autoimmune disorders that involve gut troubles know when you are having trouble, um, you know….moving, your head gets really foggy and you can’t think straight and every other symptom you have is greatly exacerbated.
Link to ABC News Gut To Brain Article

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