Lyme disease and it's co-infections present themselves with very specific symptoms. Doctors underdiagnose Lyme or wrongly diagnose it because it can present itself as other conditions such as fibromyalgia, MS, depression, chronic fatigue, celiac, irritable bowel syndrome and many other diseases. That is not the problem for under diagnosing it though. Through my journey I have learned it's just pure ignorance. If you have Lyme, you need to work the medical system to your advantage. If you have Lyme or suspect you do, you MUST seek help from an LLMD (Lyme Literate Medical Doctor) in the USA or possibly in Canada. After I found out I had Lyme, I wanted to go back to tell all those doctors That seemed so confused, why I was so sick!! So, that's what I started to do. However, I soon realized that was like beating my head against a brick wall because they don't get it, nor do they offer any help. I was so frustrated with the system. Four years of doctor appointment after appointment, my time wasted and my symptoms becoming unbearable, and no one had a clue what was going on. It angered and frustrated me, and my anxiety from the whole ordeal was through the roof! I realized instead of focusing on them, I needed to focus on me, work the system for what I needed, ignore the ignorance that surrounds this issue and just get better!
Since I've been better and off of treatment, for three years now, I often receive phone calls or emails from people who are having trouble getting help for their Lyme. When they tell me their symptoms, I realize we all have something in common. LYME symptoms. They aren't hard to spot and are very specific.
For example,
- seeing phantom images in the corner of your eye as if someone's in the room with you
- exhaustion
- head aches in front of head and in the eyes
- creaky neck
- spine going numb
tick in nymph stage - low body temperature
- slightly swollen glands
- achy
- heart palpitations
- digestion problems
- ear aches
- blurred vision
- Seeing spots especially in florescent lighting
- chest pain
- extreme motion sickness
- forget-fullness
- shortness of breath
- pressure in the head
- waking in the middle of the night and not being able to sleep
- get an awful hangover from drinking little alcohol
- facial pain
- pain in teeth and jaw
- symptoms change
- hair loss
- sudden allergy to perfumes and scents
- muscle spasms & pain, like knives going through your body
- "arthritis"
Symptoms vary slightly from person to person, but the symptoms remain very specific and instead of writing it off as MS or fibromyalgia or whatever else, as many doctors do, why don't they AT LEAST test for Lyme with an accurate form of testing, which at present only exists in the USA. Then more people could get better and move on with life! But for now, if you have Lyme or suspect you do, just focus on getting better, not on what many doctors say, do or think. It doesn't matter. What matters, is that you treat what you really have and get your health back.
I do not recall being bitten by a tick or having a bulls eye rash. I tested positive in Canada for Erlichiosis and Bartonella. However, the medical doctors I went back to try and show my test results to denied these tests and said they were false positives.
So trying to help the MD's see what I was dealing with was really hopeless. I needed to see a Lyme Literate Medical Doctor. Please see a LLMD if you think you may have Lyme.
Lyme Testing in Canada
Here are my blood tests I had done in Canada. If Lyme is not tested for during a certain window of time, the levels won't show in blood. Sound like reliable testing to you? My tests showed that either I didn't have an infection, OR the infection was no longer detectable. It was after four years of being sick I had these done. So of course the results would say that. Despite that, the medical doctors, even an infectious disease doctor, told me they were negative. Do you think I should've listened to him?
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I just wanted my life back!!!
Lyme and it's co infections are extremely hard to treat. And, being diagnosed seems to be the most difficult part of the sickness these bacteria cause. It can take years. So, as someone who went through the ordeal, and spent a lot of time trying to figure out what was wrong with me, I understand that reading about symptoms, roadblocks to treatment, and out right denial that this disease even exists is probably something you've already done. Don't concentrate on that.
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| NEVER give up! |
I am not a medical doctor. I used medical doctors to my advantage and my common sense and now I DO have my life back. It was well worth effort. You can not give up!!!!
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