Lyme Wars, A New Hope

I finally had my genetic consultation today to go over how my genes are contributing to my health, it lasted 2 hours. I am probably only retaining a small portion of all the information I received with all the talk of genetics, epigenetics and snps, mthfr, comt….. all of which were a little beyond me. The doctor went over all the good and bad factors. It is very interesting how it is written in our genes how our bodies respond to environmental factors and disease, why some things that can destroy some people don’t cause the same harm to others. I think genetics has a great influence on how different people handle Lyme. My doctor affirmed this.

I won’t name everything here, but as a quick overview I have a genetic predisposition to celiac and I am to avoid all grains
I have genetic factors that have been “turned on” regarding gut issues, inflammation, neurological issues, dopamine deficit, immune reactivity, thyroid, histamine reaction and mast cell activation.
I am greatly skimming and over simplifying, but basically now that I am moving past the lyme (with it’s coinfections) and other things I have dealt with, we can have great success at starting to “turn off” all the negative factors in my genes that have been activated by decades of disease. It will be a matter of skirting things that will cause me harm like any folated vitamins or minerals, being very careful with diet, activating good genes and detox pathways and doing some rewriting to tell the body to stop histamine, cortisol, mast cell and other negative productions.

I left my appointment having a lot of confidence that this clinic will be able to eradicate the autoimmune disease that the other diseases left behind. What an amazing blessing because otherwise I could have been left in an endless whirlpool of autoimmune reactivity Lyme or no Lyme.

Oh! And best part, the doctor had a nice personal talk with me afterward and spent time praying with me.

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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.

10 Of The Causes Of “Fibromyalgia”

10 Of The Causes Of “Fibromyalgia”

As (most) of us know Fibromyalgia is a symptom not a disease itself. Here is a really intelligent list of some of the causes (link in title). One not listed here is of course Lyme which causes Fibromylgia-like pain, especially while herxing.

Another Day, Still Tired

Image                               Quick check in for the beginning of this week.

Well here it is another night and I am in bed by 9pm. Not sleeping yet but I usually spend several hours every night quietly in my room in front of the tv and laptop. Whether or not I have had a busy day I seem to end up tired at the end of the day, so here I am.

As far as energy I seem to be at my best late morning to early evening, before and after that I’m pretty tired. I am curious, a question for you Lymies out there: what are your energy peaks and flows? What helps? What makes it worse?

I know keeping my body super clean food-wise helps but it’s not the only answer. I live in a delicate balance with my persnickety little liver and those genetic detox inhibitors as well beyond just the Lyme. Kind of stinks that, say, something like a little touch of MSG can put me down for weeks 😛

So I will try and press on and get out of this slump, drink my homemade juice and eat my leafy greens

Discouragement in the Midst of Healing

So it is days like today that remind me with a hard slap that I am still sick. Even though my horrible energy slump is getting better and I am doing some more things my body is still in a constant state of anger and intense inflammation.
I whine a lot on this blog about my water retention, but no joke my legs and butt look like fat suit Gwyneth Paltrow in Shallow Hal. I am very serious about this, it may be a downsized version but same effect. I carry around enough water that if I change directions too fast my thighs may end up at the other end of the compass than I am facing….
Okay, I know that was a lot of whining. So even though I am super strict with my diet I am thinking I need to get downright aggressive, meaning not even having those few times a month when I have a bite of this, a bite of that, because my body is just angry, can’t detox properly, can’t methylate, has poor circulation, and obviously has a great affinity for H2O.
I am by default with all my restrictions paleo+ , meaning I take it way beyond the basic paleo diet with restrictions, but I am considering looking into the GAPS diet and seeing what that is all about and really focus on gut healing.
Ok, that is all the energy I have for tonight. Tomorrow I resume the Lyme/Candida/Leaky Gut/Mold Biotoxicity/Methylation Defect…etc fight.

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