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.

Has Climate Change Made Lyme Disease Worse?

Lyme Handbook

Excerpted from the Scientific American : (9/22/2014)

Richard Gardiner had no option but to shut down his law practice in Fairfax, Va. in the summer of 2012. A fit 60 year-old, he came down with a high fever and the worst chills he had known in his life. He spent a miserable summer bedridden with aches and debilitating fatigue.

At around the same time in Bozeman, Mont., 12-year-old Noelle Freeburg – described by her mother as a “healthy-as-a-horse” tween who enjoyed dancing, swimming and skiing – became feverish, dizzy, and doubled over with stomach aches every time she tried to exert herself.

In different corners of the United States, this middle-aged man and middle school girl were embarking on the same frustrating, costly journey. It took both of them months to learn why their health was deteriorating. They were patients on the frontiers of North America’s expanding Lyme disease epidemic.

Less than…

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It’s A New Day

It is interesting how quickly things can change. The last couple days have been remarkably good for me after a having just gone through some bad days.
Thursday I was able to visit a friend after a long day of work and didn’t suffer for it. Friday I went on a 30 minute bike ride and later in the day visited another friend.
Saturday I went on another short bike ride then later attempted to go on a short hike. I only made it 1 mile and had to turn around, but that’s okay, that was a huge deal! Better yet I did not suffer too badly for it. Today I was a bit fatigued but attempted my first power yoga class in years. I only made it through about two thirds of the class and decided I couldn’t push any further and had to go into child’s pose, but again that’s okay.

This is some of the most living I have done in a long time and I am feeling very blessed. Will I have more bad days? Possibly/probably, but that’s okay too.

I’ll keep everyone updated.

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Good Days and Bad Days, The Ups and Downs of Lyme Treatment

Worth a repost

My Color Is Lyme

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This site continues to post incredible articles. This one very articulately shares the extreme highs and lows of Lyme disease, especially when you are in treatment.

” You’ll be symptom free, full of energy and ready to carry on with life but this is biggest deception you could fall for because soon enough you’ll be hit with a bad day.  The bad days are the days where you learn to understand that treatment is actually worse than doing nothing to combat your symptoms in the first place.  Bad days will lead you to question your own sanity” 

(full article below)

http://www.tiredoflyme.com/good-days-and-bad-days.html#.UhJBsj9OeSp

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Vitamin B 1 Deficiency

Here are a few good links on foods high in Thiamine (B 1) and symptoms of deficiency.

I am not surprised that a lot of people who suffer from Chronic Lyme have this problem due to several factors; malabsorption, the fact that a lot of us can’t tolerate grains or dairy (some foods high in B 1) and the fact that some of us have the MTHFR defect that inhibits us from methylating properly.

I just ordered some Thiamine online but I could not find a methylated form, so I am hoping this gets some results.

http://www.nlm.nih.gov/medlineplus/ency/article/000771.htm

http://www.whfoods.com/genpage.php?tname=nutrient&dbid=100

http://www.healthaliciousness.com/articles/thiamin-b1-foods.php

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Waiting on the Lord

Amen

Hope Beyond

Waiting on the Lord,

Clinging to this keyboard,

Playing the “how long psalm” in my head.

Where does my help come from?

So obvious that it’s Him once again

And yet the troubles trouble on.

“God is not Santa Claus,”

I once wrote a fellow sufferer, or

One who hands us our lottery happiness ticket.

The Lord knows no boundary of time

So our journey must not be measured so

Lest we push ourselves out of His perfect plan.

For if we take the reigns

And steer off course by will

We may never see His glorious promise revealed.

He will never leave us or forsake us.

He is with us now and til the end.

His mercies renew and He graces us with abundantly more.

Humbly shall I remain

Waiting on my Lord with open eyes

For His return in glory:  it will be soon.

And on that day I…

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Bad Day Post

Okay so here it is, posting on a day when I’m down.
All in all this week hasn’t been too bad. I have had better energy and been getting through my days more easily (good). But for the last week I have also had much worse insomnia (bad).

My LLMD in Seattle had given me Ambien from the beginning that I have taken semi-consistently throughout treatment due to sleeping troubles. I have gotten myself down to just a 1/3 of a pill per night (approx 3.34mg) and done fine with that along with Zen (GABA and L-Theanine). However this last week I have struggled for hours to fall asleep, spent the night in and out of consciousness and then been waking up around 4am. I am exhausted.

Thursday I ran out of my Ambien and I was going to let it lapse because I would rather not be taking prescription sleeping pills, however Friday I was so physically ill with fatigue that I made an appointment with a general care practitioner to get some more. I didn’t like doing it but Friday was pretty miserable with the fatigue and exacerbated swelling and gut issues that went along with it.

So, the reason I am feeling down; Although I am noticing improvements I am still not seeing a change in the water retention and increased swelling that seem to accompany….everything! (Eat, exercise, make plans…)
This is partially pure vanity (ladies) but it’s tough when I have been on a super strict diet for years, don’t eat too much, get the best nutrition and support that I can and have 20 pounds of toxins and water and fat that won’t budge.
Beyond the vanity it is physically painful and uncomfortable as well and I have a lot of circulation issues.
Besides the deep tissue water I also have “spongy” “wet” “water bed” water that sits under my skin all over my body.
I just had a discussion with Idaho Doc regarding this and he recently read about MTHFR defect, those with Lyme and the deficiency of Vitamin B 1 (Thiamin). Apparently one symptom is spongy wet water retention… Well by Jove I am going to go get me some Thiamin!! I know that I had a test specifically regarding my inability to metabolize vitamin b, so I hope this is a piece of the puzzle. Thing is I have had so many of these “aha” moments over the years I can’t get excited anymore. I have chased more white rabbits down this hole than I can count, and you know bunnies multiply……

So not to talk in circles, but I am also down today because some weekend plans fell through, and (gulp) I went clothes shopping. Yes that ego boosting feel good activity that slaps you across the bum and reminds you that indeed Tyra would never want to see your smize.

Then the mind goes down the other rabbit hole of how old you are, all the things in life you want and have never had, all the dreams that may never come true…..and how lonely you are. I personally also get down on myself and how I am not as good a “specimen” as I would like to be and not worthy of the kind of man I hope I’m waiting for. (I know this is a sucker punch from the enemy).
Right now I am doing my best to pray through the negativity. I know God has a promise in every problem. I know there is a spiritual upgrade through every trial. I know that the only reason I have had to wait on so much is because I am waiting for bigger more spectacular blessings. All these things are true, but isn’t it so hard to get your emotions in agreement with your head and heart?
So I will cry and pray it off

(Pre-fluid flair up, 2008? Interestingly enough I still had fluid problems but not consistently and not to an extreme degree).

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