From @ a Lyme Warrior Ken Allein
I always had health issues since I was a newborn ... My mother was a nurse at the time as was her sister. I will so sick my mother was really scared for my life she told me later in life.
She had the intuition back in the early 70's to take me to an allergist in Kenmore NY. I was allergic to everything food, pollen grass, mold just to name a few .
My diet was changed allergy shots prescribed etc. When I hit age 13 things became apparent something else was going on.... Random things such as joints aching for days, fatigue where I would sleep anyplace at any time. my sleep was varied insomnia,then too much sleep.
Then, once I was out of highschool it was gastro issues of enormous pain only to be told there was nothing wrong with me other than IBS. Then it was mood swings I could not put my finger on. Things such as Depression,anger anxiety, paranoia and had no idea where this was coming from. I was given drugs and counseling but they never helped.
Fast forward to 1994...
I had lived a life of misery and it still I was getting worse and Drs could not tell me what was wrong with me. I remember having shortness of breath where walking to the kitchen sink or my bedroom would leave me breathless.
Gastro issues flared so bad I thought the pain was going to kill me. My weight went from 176-150 . Gastro Dr said he found nothing after many colonoscopy over the years.
At age 45 I remember sitting at my desk in my home office staring at my computer screen not being able to process what I was supposed to be doing . It was like I was in a fog not being able to remember anything. This is when I became nervous.
At the time I was working for a non profit conservation organization where I would give deer and habitat education presentations. One night I was scheduled to present to a group of sportsmen and women . I was all set up and ready to go. Over the years I probably have given hundreds of this type presentation. Anyway I found out that I was having trouble getting through this presentation which set off my anxiety alarm where I couldn't find the words to present the information. I was a wreck , scared , anxious, and debilitated. People knew something was wrong because many had been to of my presentations over the years on various other wildlife topics. This was in 2007
After this event I went to dent neurology where I had hoped they would tell me what was going on with me. Well they found nothing. My memory proceeded to fail me even more as time went on and no Drs could tell me what was wrong with me.
Then in 2015 one morning I could not get out of bed. My muscle pain and fatigue was so bad I thought I was going to die.
Over the years I had had several lyme tests. All the tests came back negative.
With my mother being a nurse and my grandfather being a dentist you were taught to trust your Dr and the science.
What I didn't know was that the Lyme test is highly inaccurate.
This is when I started to read and research about Lyme disease in detail. What did I have to lose after Drs up to 22 of them told me it was this and that prescribed drugs and treatments that really never gave me relief.
Then I saw a article about a husband and wife who had went through many of the pitfalls I had went through. But the husband was having acute problems some symptoms the same and many different.
So I reached out to them.... Their names were Rebecca and Chuck Roll . Chuk was diagnosed with Lyme disease but ended up going through the same problems with Drs .
And they couldn't tell him what was wrong.
So I went to one of their monthly meetings when they were a fledgling group with up to maybe 10 -15 folks involved .... Those afflicted with Lyme disease.
There was a very common theme by these folks their story was so very similar to mine in that most Drs did not know how to diagnose and treat Lyme disease and chronic Lyme disease properly . As drs they were very mis informed about the guidelines in which they work within. But that is for another discussion on a different posting.
Lyme wny gave me insight to the pitfalls of Lyme disease and the poor science that was being used within the mainstream medical community .
I was going down a bad road health wise until I met Lyme wny they gave me info of Lyme literate doctors to choose from they knew who were the good and not so good. They had people within the group who could talk about their journeys which was a huge support. Because many Drs tell you it's all in your head take some psych meds and be on your way.
They are a family of support and if it was not for them honestly my health would be non existent .
What I found out when I went to my LLMD is that I likely was born with Congenital Lyme disease after my Dr looked over my entire health history. (Yes it is real)
My health is not perfect since being diagnosed with late stage chronic Lyme disease but I have to say my life is 50-60 percent better than it was over the years. Chronic Lyme disease is real I am a living testimony to this.
Thank you lyme wny
For giving me support and the real FACTS about tickborn illnesses.
I will be forever
greatful to my new family.