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I was diagnosed with Lyme Disease 4.5 months ago now.
I was so relieved when I walked out of the doctors office with an actual diagnosis. I had 3 weeks of antibiotics in hand and I believed I was in the clear.
Little did I know the mess that I had just been thrown into.
It is very rare that I was diagnosed within a week of my first "alarming" symptoms. Most people go years without a proper diagnosis, they are often misdiagnosed, and thus mistreated.
After my first 3 weeks of antibiotics, my symptoms came back immediately, and with new and worsening symptoms. I was simply put on 3 more weeks of antibiotics. This is where I began my own research on Lyme Disease.
The problem with Lyme Disease is not the disease itself, its the money war that it is caught up in. The CDC does not recognize chronic lyme (ME), and states that Lyme is a simple disease that can be cured with 3 weeks of antibiotics. This is true, in that if you see the tick, develop a rash and are on antibiotics within a few days, you should be in the clear, but what about those of us who had no rash, and had no memory of ever being bitten by a tick bite. That bacteria still made its way into our blood stream, and had a chance to dig deeper in deeper in our bodies.
Since the CDC does not recognize chronic lyme, neither do insurance companies, they will not pay for long-term antibiotics plans. Most doctors don't know much about lyme past it's early stage, thus they don't know how to treat chronic lyme.
(I recommend watching the documentary "Under our Skin" and its sequel "Emergence" for information on this crisis.)
And that is where I find myself.
My symptoms include
-Extreme Fatigue
-Full body weakness
-Vertigo (Especially after eating)
-Difficulty walking, due to painful knee joints, sharp & burning leg pain, leg numbness (Often using a cane to walk)
-Constant air hunger (Like an asthma attack)
-Painful joints in hands, hips, feet, and ankles
-Sharp pains throughout my body
-Numbness in face, feet, hands, and legs
-Twitching of the face or other muscles
-Constant difficulty breathing
-Heart murmur
-Confusion, difficulty thinking
-Nausea, stomach pain
I've had many blood tests, x-rays, and a brain MRI, and everything is coming up normal except for my first positive Lyme test 3 months ago. I've let the doctors do this to simply cross other things off the lists, such as MS or rheumatoid arthritis, but every time they said I don't think this is lyme, i've continued to advocate myself.
Doctors who know how to treat chronic lyme call themselves Lyme Literate MDs. These doctors are very rare and hard to find. They are often not covered by insurance. I have searched for months now, and I have found a LLMD who is happy to treat me, and agreed the treatment plan I just started is all wrong.
I cannot afford the costs of this LLMD and their office is 4 hours away. So I am reaching out into my community through this site for any kind of donation to help fund my treatment. I believe i've had this for less than a year, which means I hope my prognosis is good, and the faster I begin this treatment the faster I can back to being a 21 year old, making your lattes and taking cute pictures of your kids.
-Liza
I was so relieved when I walked out of the doctors office with an actual diagnosis. I had 3 weeks of antibiotics in hand and I believed I was in the clear.
Little did I know the mess that I had just been thrown into.
It is very rare that I was diagnosed within a week of my first "alarming" symptoms. Most people go years without a proper diagnosis, they are often misdiagnosed, and thus mistreated.
After my first 3 weeks of antibiotics, my symptoms came back immediately, and with new and worsening symptoms. I was simply put on 3 more weeks of antibiotics. This is where I began my own research on Lyme Disease.
The problem with Lyme Disease is not the disease itself, its the money war that it is caught up in. The CDC does not recognize chronic lyme (ME), and states that Lyme is a simple disease that can be cured with 3 weeks of antibiotics. This is true, in that if you see the tick, develop a rash and are on antibiotics within a few days, you should be in the clear, but what about those of us who had no rash, and had no memory of ever being bitten by a tick bite. That bacteria still made its way into our blood stream, and had a chance to dig deeper in deeper in our bodies.
Since the CDC does not recognize chronic lyme, neither do insurance companies, they will not pay for long-term antibiotics plans. Most doctors don't know much about lyme past it's early stage, thus they don't know how to treat chronic lyme.
(I recommend watching the documentary "Under our Skin" and its sequel "Emergence" for information on this crisis.)
And that is where I find myself.
My symptoms include
-Extreme Fatigue
-Full body weakness
-Vertigo (Especially after eating)
-Difficulty walking, due to painful knee joints, sharp & burning leg pain, leg numbness (Often using a cane to walk)
-Constant air hunger (Like an asthma attack)
-Painful joints in hands, hips, feet, and ankles
-Sharp pains throughout my body
-Numbness in face, feet, hands, and legs
-Twitching of the face or other muscles
-Constant difficulty breathing
-Heart murmur
-Confusion, difficulty thinking
-Nausea, stomach pain
I've had many blood tests, x-rays, and a brain MRI, and everything is coming up normal except for my first positive Lyme test 3 months ago. I've let the doctors do this to simply cross other things off the lists, such as MS or rheumatoid arthritis, but every time they said I don't think this is lyme, i've continued to advocate myself.
Doctors who know how to treat chronic lyme call themselves Lyme Literate MDs. These doctors are very rare and hard to find. They are often not covered by insurance. I have searched for months now, and I have found a LLMD who is happy to treat me, and agreed the treatment plan I just started is all wrong.
I cannot afford the costs of this LLMD and their office is 4 hours away. So I am reaching out into my community through this site for any kind of donation to help fund my treatment. I believe i've had this for less than a year, which means I hope my prognosis is good, and the faster I begin this treatment the faster I can back to being a 21 year old, making your lattes and taking cute pictures of your kids.
-Liza