Do You Have ALS Or Is It Lyme Disease?
This blog posting is more for those who do not have a Lyme disease diagnoses yet. I am not a doctor but I have gathered information over the years and have had personal experiences that might be helpful to someone.
Growing up as a sick kid I was always at the doctor’s office for some medical reason and more often than a normal healthy child. I was diagnosed correctly on a few things but I cannot count how many times I was misdiagnosed. As I grew older and my illness became more severe my diagnoses were even further off of the wrong path.
After having to diagnose myself through the Internet (yes the Internet) and from speaking to my aunt, I realized that doctors just don’t seem to take the time to find the needle in the haystack. I always hear doctors say “stay off the Internet those medical websites cannot diagnose you”, well neither can you doc. Dr. House (House M.D. on Fox) may have been a fictitious character on television but he never gave up trying to find out what was wrong with his patients.
If you are a person suffering from Amyotrophic lateral sclerosis (ALS), Multiple Sclerosis (MS), Parkinson’s disease (PD) or others, you may want to get a second diagnoses if you feel you may not have these medical conditions. Why? Because I was told I had all three of these illnesses which were all misdiagnosed. The final result before I gave up on all family doctors and specialists (Neuros, Rheums..) was that I had possible MS, Parkinson’s and a movement disorder.
Lyme disease is a great imitator and can mimic many other diseases or illnesses. Lyme disease is a horrible nightmare and not an easy fix and many doctors lead you to believe. Those with late-stage/chronic Lyme disease who are disabled (like myself) and bedridden can tell you just how awful it is when it has taken over your body. It can wither away your body and make you look and feel like you have ALS.
If you have the time then watch a great movie called Under The Eightball where the film maker shows you and tells you about his sister’s struggle with Lyme disease and how she was misdiagnosed with ALS. It is a very sad film but they are getting the word out there and showing you some of the secrets of Lyme disease.
Under Our Skin is another great film to watch. It will really open your eyes. You can watch it on Hulu for free or find it on Netflix, YouTube or buy the film (which I recommend to show your friends and family). If you are new to Lyme or think you have it watch Under Our Skin.
In Under The Eightball if I can remember correctly (my Lyme cognitive issues have taken away my short and long-term memory) Lori was told she had ALS and was severely sick and in and out of hospitals. She was disgnosed with ALS and was being treated or taken care of for ALS. Lori knew she had Lyme disease but the doctors/hospital refused to give her Lyme treatment.
When Lori finally received some antibiotics (used to treat Lyme disease) her breathing was becoming stable and she was feeling better I believe. This showing that yes she had Lyme and most likely not ALS. Doctor’s took her off antibiotics and refused to treat her for Lyme disease.
Lori later died. Parts of her from her autopsy were sent to a lab and they came back “POSITIVE for Lyme”. What a shame and this poor girl suffered because doctor’s refused to think that maybe she had Lyme. By the way; If you have Lyme disease insurance most likely will not cover treatment so you get sent home from the hospital even if you are severely ill.
So here is a case that was documented. I have had the same experience first hand. Then I have heard from so many people in the Lyme community that their Lyme disease was misdiagnosed as ALS, MS, Parkinson’s…..etc. We get put through all sorts of tests such as MRI’s, CT scans, lots of blood work and more.
Not one doctor out of too many to count ever mentioned Lyme disease to me as a possibility. After I was diagnosed with Lyme disease by an LMD I went for a follow up to a family doctor where I told him I am positive for Lyme disease and many coinfections. His response was “Lyme disease does not exist in California” which was the doctor’s nice was of saying I was lying and do not have Lyme. He laughed at me and then told me to have a nice day. That is professional huh?
The reason I wrote this post to inform potential patients with Lyme disease who are more than likely being misdiagnosed right now to get a second opinion and see an LLMD. You will not get the help you need with Lyme disease from a family doctor, infectious disease doctor or specialists. In fact on my blog I have a post where a doctor was making fun of Lyme disease patients.
Be your own advocate and if you feel something is not right then do what you can to find the truth. I am not saying that all cases of ALS, MS and so on are misdiagnosed I am just saying I bet there are many out there that are. This could save your life and your body. Never be afraid to speak up to a doctor, ask questions or tell the doctor they are full of bullshit.
I could go on about how many trips to a doctor’s office where I was mistreated and there was no care. We are paying to see these doctor and we deserve answers and to be treated fairly. I had so many doctor visits where they give you a pill and said “this will cure you” and nothing ever happened. The next visit it was like “well we don’t know what to do so get out”. Sadly this happens a lot to Lyme and Fibromyalgia patients.
So if you have any of the medical conditions listed in this post and feel you may have Lyme disease please seek a second or third opinion. Don’t give up and keep being persistent until you are sure your diagnoses is 100% correct. You never know. Best of luck to you.