Hey everyone! I haven't blogged for quite awhile now. About 8 months to be exact. I have been very sick and am actually still dealing with some chronic health issues. I want to apologize if this post is not written well, and/or hard to follow. My "brain fog" is extra foggy today. ;)
Well, my health has been rapidly deteriorating for awhile now, but especially in the last year or so it had gotten terrible. I found out 7 months ago that I have Late Stage Chronic Lyme Disease. The tests showed both long-term infection, and recent infection. I have I had it for 20+ years, but I have also got bit by infected ticks (who carry the Borrelia Burgdorferi bacteria and other terrible co-infections) a few times throughout my life. I also have Bartonella, and Babesia, which is comparable and similar to Malaria. I know that in one of my earlier blogs months ago, I talked about my Health issues and how I have several. I have been misdiagnosed with MS (in late 2012), Fibromyagia (in 2009), Chronic Fatigue Syndome..etc. I haven't felt "well" or not in some amount of pain since I can remember. My mom took me to many doctors when I kept complaining of fatigue, weakness, pain, among other thing, but they led her to believe I was "crazy" and even "attention seeking". No one even really knew Lyme existed back then, and if they did they had no idea what it was. So there was no chance of them testing for it, seeing as all of my symptoms fit. Another issue with this disease is that all routine lab work will come back completely normal for he most part, which mine did. So afte years of going from doctor to doctor and them all telling my mom I was "perfectly healthy" besides my learning disabilities and things of that nature (I didn't get diagosed with Aspergers either until age 16), she believed the doctors, and I don't blame her..what else could she do? In society, we are taught to fully TRUST our medical professionals. That's when my Mom and I's relationship started getting really rocky, is when I continued complaining of symptoms that according to doctors, just "weren't there".
Even 2 years ago, I was told that a lot of my symptoms were "all in my head that I was a "Hypochondriac", or it was "JUST Fibromyalgia". The reason I never gave up, and kept fighting to figure out what the actual cause of my ailing health was, was after my M.S. (mis)diagnosis, I came across a photo of a "Bulls-eye rash", and I clicked on it because I had that EXACT rash 4 years previous. The caption read "EM rash indicative of Lyme Disease. If u get this rash, seek help immediately." Four years before that we had a campfire in our backyard, and when we got inside, I told my husband, "come look at this weird red circle mark on my arm, what is this like ring worm or something? (lol)" He had no idea, and our yard was in the woods, full of bugs, so we put some Caladryl on it, and since it didn't itch or bother me, we never thought twice about it(this is why awareness is sooo important).
I looked up Lyme Disease. I read it was "the great imitator" because it had the same symptoms as over 50 diseases/conditions out there. I had ALL of the symptoms. Now I needed a diagnosis to prove that I wasn't "crazy". It wasn't easy, that's for sure. I literally had to BEG doctors to even TEST me for Lyme (the reason WHY I will explain further into this post). Once I finally talked my Rheumatologist into testing me for Lyme, he said "ok fine but it will come back negative, Lyme is EXREMELY rare and you don't have it. You have R.A." (Sidenote: R.A. is a SYMPTOM of Lyme bc it is CAUSED by Lyme itself). So he sent me for an ELISA test. The problem with Lyme tests, are there aren't any accurate ones. 50% of those with Lyme will test negative on both the ELISA and Western Blot. Another problem, is that there are over 100 strains of Lyme, and standard labs only test for 4 or 5 at most. There are no false Positives. So if you're positive you're positive. Now in my case, after my ELISA came back Negative, and I cried for hours(its hard not knowing what's really wrong with you, or when you do know, but no one will believe you). Well I never gave up and kept fighting to figure out what the actual cause of my ailing health was..but I did. It wasn't easy, that's for sure.
I paid $270 to have my "Western Blot" test sent off to the top lab in the country (Igenix Labs) the most accurate and skilled in testing for Lyme Disease. About 16 days later my Doctor's office called me and said, "your test came back POSITIVE for Lyme Disease". I thought, "FINALLY now I can receive the RIGHT treatment and get better!" Well, here I am 7 months later, and I am absolutely miserable because I haven't been able to afford the PROPER treatment which is IV antibiotics that the insurance refuses to pay for. The insurance and IDSA guidelines say "28 days of oral antibiotics should be sufficient". Whats a joke. IV antibiotics are the only way to treat a case like mine, where it's late stage, and chronic due to going undiagnosed for so many years. The little bacterial spirochetes are shaped like a cork screw. After years, or in some cases even months, they burrow into, and hide in your joints, brain, heart, organs and that's another reason it's often hard to detect in someone who has been infected as long as I have. Because your body stops producing the antibodies in the blood after awhile. They can also morph from spirochetal form to cyst form, and even surround themselves with a biofilm which is a protective outer shell, that nothing, even antibiotics, can penetrate. (By the way, I may not be explaining this well right now, but doing the best I can because I want everyone to be informed.)
I have become increasingly disabled, and symptomatic over the last 4yrs especially. It's wreaked havoc on my body in so many ways. Its's so complex. I have thyroid issues, arthritis, neurological probems, neurological issues, muscle weakness, dizziness, trouble walking to another room in the house some days, pain in joints, and musculoskeletal pain..etc. the list goes on. Add Asperger's (or ASD, as I've been told, is more PC these days) to that list, and let me tell you, it is so hard dealing with day to day life. I probably would have given up by now if it weren't for my 6 yr old daughter. She needs her mom to be healthy, and I refuse to be a "sick mom" for the rest of her life!
Research has found that Autism and Lyme are very closely linked. One scientific study showed 8 out 10 people on the Autistic Spectrum also tested positive for Lyme Disease. Lyme Disease is truly an EPIDEMIC in the US, but due to greedy people with "special interest" in the disease, I doubt you will be made aware of this debilitating disease through any media outlet, or even through your doctor. Again, that's why spreading awareness is so important. A few of my doctors have told me I have "Lyme-induced Autism" which just means they believe it was/is the "cause" of my AS. Does it mean it will "go away"? Well I'm not so sure. But I have heard/read stories where kids who had ASD were "cured"..one of them, right here in my county by my LLMD (stands for Lyme Literate Medical Doctor). He began speaking, when he would not speak before, among other improvements. The LLMD's are the only ones that will actually TREAT the Lyme and break the outdated IDSA guidelines that say Lyme is "Rare", "hard to get", and "easy to cure". All of which are FALSE. I have been doing Antibiotic Therapy, which is the main treatment for Lyme Disease. Unfortunately, it causes a "herxheimer" reaction, whch means the antibiotics make you very ill due to the bacteria "die-off", and the body not being able to detoxify as fast as it needs to, so temporarily it become toxic and makes you feel extremely ill. But u have to get worse before you get better..so they say.
I started getting better 3wks into the antibiotic therapy..I was able to climb stairs again without my legs feeling like jello, sweating, heart pounding, and being out of breath. I was able to do physical things I have been unable to do for years! That lasted about 3 months. 3 amazing months. Then we ran out of money to continue the treatment I needed, and still need. We are having financial issues now because most of my medical costs have to be paid out of pocket. Just was finally able to get a laptop again, the one I am typing on now. It was a gift. Anyway, it's sad the medical community is hiding this Epidemic of Lyme Disease from the general public. They try to keep it out of the media for several reasons. Insurance companies have actually paid off the IDSA and CDC, since antibiotic therapy is so expensive, and there are soo many people out there who are getting misdiagnosed(like I was with MS) and/or don't even know WHY they are sick, when in reality, it's most likely Lyme Disease. So if they actually were made aware, not only would the insurance companies have to shell out ALOT of money for antibiotic therapy, but BIG PHARMA doesn't want people knowing the root cause of pretty much every disease out there with an "unknown cause" because then those people would be interested in treating the ROOT cause with antibiotics rather than continuing to mask their conditions with things like Lyrica, Cymbalta, anti-depressants..etc. And they would lose a lot of money.
It's all one big mess, as am I..lol. I will continue posting the research and links between Autism and Lyme Disease.
Lacey G.
