Hi Sooverthis,
First of all, congratulations and thank you for sharing this with all those who will see it!! Good, real education is the first step in reducing the numbers of people dealing with chronic Lyme at least!! And another thank you for sharing all of this not only here, but elsewhere - we really never know how many people our journey will touch and make a difference in their life!!
I do hope that you don't mind - I have lots of links and I'd love to have them put to use -so I quoted your whole thread and I'll put in links that correspond to what you are writing - then you can take them out or whatever as you choose so that they fit better and don't overwhelm those you are directing this to. It was either this or just listing a bunch of links and letting you figure out what I was thinking!!
LOL!
Let me know if you would like any that are more specific too.
So here we go:
Sooverthis said...
I haven't told most of my extended family what's been going on with me, and I wrote a piece with my story, and some education, and was thinking of sharing it. My computer crashed a few weeks ago, and I lost most of my research, so I tried to do it by memory, and was hoping you guys could point out any factual errors, or let me know if it's too much. It did get long, but I feel it's relevant.
I also wanted to link symptom lists, and the map showing Lyme, and MS outbreaks if anyone has good ones handy. Thanks to all that take the time, constructive criticism welcome!
Alright, I'm not one to air my personal business, but I feel there are many people out there who could be helped by this, so I'm going to share the struggles I've been having the last few years, mixed with a little education, and hopefully cause some of you to take extra precautions, or at least recognize the signs to avoid the same fate.
In September 2013 I was diagnosed with Late Stage Neurological Lyme Disease, and a few other co-infections(if it carries Lyme, it often carries others). You might think Lyme is easily treated, or that you would recognize it if you got it...I would say you could be wrong. Research is showing less than half infected see a rash.../sites.google.com/site/drjoneskids/rash-photos I didn't, and it's estimated the tests they use only have a 30-50% accuracy. lymedisease.org/lyme101/lyme_disease/lyme_diagnosis.html I received 2 FALSE negatives. The CDC admits that Lyme should be a clinical diagnosis(based on symptoms, not tests), and recently changed their estimate of 30,000 new cases a year to 300,000...but good luck finding a Dr. that has a clue.
Lyme can lay dormant, or as it did in my case, cause "common" issues that are dismissed for many years before it explodes, and it can be fatal...so pay attention to all those little things you, and your Dr.'s shrug off! Many of you(now kids/grand kids)grew up in the same endemic area, so even if it gets a little long, I encourage you to read through to the end...it could save you valuable time, and help you avoid misdiagnosis if this ever enters your life. First, a brief Lyme intro, probably unlike you've ever heard it, then my story...
Lyme Disease is a multi-system infection, and research is showing it is passed by more than ticks.www.lyme-symptoms.com/LymeTransmissions.html It has the ability to corkscrew into every part of the body including bone, and can alter its form to avoid antibiotics, and the immune system. Many experts are finding that under/untreated Lyme, and co-infections CAN be MISDIAGNOSED, as I almost was, as MS (Lyme and Bart cause lesions, too) ALS, Fibromyalgia, Chronic Fatigue, Rheumatoid Arthritis, Parkinson's, multiple Thyroid/GI/heart/disorders, Alzheimer's, ... . It is passed through the placenta, and can result in miscarriage/birth defects, or EXPOSE IN CHILDREN, sometimes later in life, as stomach/headaches, allergies, bone/muscle/joint pain, Autism, Aspergers, multiple behavior/learning disorders, ... . They call it the Great Mimicker(replacing Syphilis)because it has the ability to mimic over 350 diseases lymebook.com/blog/testing-diagnosis/misdiagnosed-diagnosis-mimics-great-imitator/, and being a long term infection which taxes the Lymphatic system, has been shown to increase chance of Lymphoma.
The initial start of infection is SUPPOSED to be flu symptoms. Some go through the stages(1st-flu/rash, 2nd-heart/CNS, 3rd-neurological)within weeks/months. Some skip 1st, and go right to 2nd, and some just get over the flu, and have symptoms pop up over time. So, even if you never saw a tick/bullseye, infection could've been mistaken for a virus, or missed completely.
After going through my records, my Lyme specialist estimates I was infected during childhood, and possibly again later in life. I recall some symptoms from earlier years like a lot of ear/stomach aches, TMJ, always felt weaker/slower/more tired than everyone else, ... . Pre/early teens I remember getting a lot of spider veins, and easy bruising, headaches, and one of my nails started splitting. I know this is a symptom for me because since starting treatment it's going away. When I was in my late teens/early 20's I got blurry vision, different sized pupils, puffy feeling fingers, swollen lymph nodes, and a few times of almost fainting when I stood. Mid 20's brought stronger headaches, my big toe went numb for a while, periods of over active bladder, and HEART PALPITATIONS(This is a big one, ESPECIALLY with a conduction block on an EKG. This is a CDC 2nd stage marker, and neither of the Dr.'s, or the Cardiologist caught it.
Some people's immune systems could hold off big problems indefinitely, or until a period of large stress, pregnancy, or illness. Following a major death in my family, and a pregnancy symptoms started picking up speed. My throat started hurting every few months, felt nauseous. I got occasional face/brain pangs/movements, my arm seemed to go numb easier. Then my knee would hurt a couple times a year, and my rt. leg felt weak walking upstairs, seemed out of it sometimes. I always felt like something was really wrong when most things popped up, and went to the Dr. for everything I listed, but they could never find anything...Turns out I was right, but I never imagined those symptoms, and the others that would come and go over the years, would lead to a PREVENTABLE chronic illness that has very little recognition. www.lymeresearchalliance.org/signs-symptom-list.html
There are hundreds of symptoms, and they vary in type (physical/neurological/emotional), and intensity per person. This could be based on what strain(there are 300), and co-infections you have. Bartonella--also from cat scratches/bites/lice/biting flies--causes pain/tingling on the soles of your feet, rib pain, emotional issues, and swollen lymph nodes, ..., and Babesia could cause dark urine, insomnia, or night sweats, ... . A lot of people complain of chronic pain, but I barely had any, so I, and I think others would say the main symptom of Lyme and co's is migrating anything.
One day you might have knee pain, then it moves to the other, or the hip/elbow/shin/forearm, or just disappears. You might notice headaches, then numb hands, or you feel nauseous, or more irritable. There's usually something, but the focus seems to switch. I had things that would come and go, with months, even years in between, but the only ones that came, and barely ever left were heart palpitations, blurry vision, TMJ, a couple mildly swollen Lymph nodes, and my split naiI. I was told everything was either common, normal for me, or it was anxiety/stress, which I accepted every time because I felt fine...which leads me to the rest of my story.
I felt good for a few months after I had my 2nd child, but soon I was experiencing old symptoms again, and this time they were coming out stronger, and in an order that should have been caught. First, I had 1st stage--I felt flu like, and got more swollen lymph nodes, had ear aches, felt lightheaded, and my throat hurt with no infection. A couple months later I hit 2nd stage which is central nervous system and heart--I still had all the 1st stage symptoms, but now my TMJ was worse than ever. I had a stiff/grinding neck, and everything was randomly hurting and tingling. I still had blurry vision, but now I was seeing flashes, then my heart palpitations got stronger, and I still showed a heart block on the EKG...they blew it off again!
A month after that, I started feeling really weak. I noticed weird bumps in my shins/thighs, and bruises, so I went back to the Dr. AGAIN, and was diagnosed with Erythema Nodosum(painful inflammation of fat tissue due to infection). He ran tests, assured me I had no infections, and said it would go away in a couple of months. I didn't really believe him, got a 2nd opinion, and was told it was benign subcantaneous nodules, but they agreed I had no infection. I now know the co-infection Bartonella can cause both.
6 weeks later brought brand new symptoms, and I hit what should've been recognized as 3rd stage. I was having whole body tremors/twitches, my movements felt jerky, ears were sensitive and ringing, my joints were cracking, I felt off balance, my rt. leg looked smaller, and my muscles/brain felt like they were deteriorating. I went back in questioning him on the Erythema diagnosis, and rattling off the new symptoms. I told him something was really wrong, and he needed to find it, so he diagnosed me with General Anxiety Disorder. I disagreed, and refused medication. He stuck with his diagnosis, but agreed to pass me to yet another specialist...telling me they probably wouldn't find anything either...but this time they did.
I went to the endocrinologist due to slightly off TSH levels. They found 2(benign) cysts on my thyroid, and I was diagnosed with Thyroiditis(inflammation of thyroid usually due to infection). He thought I might possibly be heading into Hashimito's, and I was told this couldn't be causing everything, but at least this Dr. believed me. He felt my symptoms were real, and stated in my file he felt this was more than anxiety, and encouraged my Dr. to explore different areas...didn't do much good though.
I went to 12 Dr.'s/specialists in 11 months. They all saw my file, all saw the course of progression over the last year, and only 1, about 5 months into the ordeal, mentioned Lyme Disease. She ordered me the test, while telling me it wasn't that accurate, and still accepted the negative result. At least she put it in my head though. In the weeks/months to come, I mentioned Lyme to other Dr's. After all, I had a lot of symptoms on the list, with CDC markers from 8 yrs ago, and recently. They told me I already had a negative test, if I had Lyme that long I'd be dead, or in a wheelchair, or that I didn't have enough pain...I listened for the time being because I was focused on MS, ALS, and Parkinson's...
My symptoms continued to increase monthly, and I was exhausted. I felt like I had mono, strep, and flu all at once. My voice was weak, I was lightheaded, clumsy, had insomnia, and head pressure anytime my heart rate rose. I was having trouble lifting my children, had lost 60 lbs over 8 months, and all everyone kept telling me was you look great. The only things that proved any of my symptoms was the EKG, swollen lymph nodes, usually from infection, and two diagnosis' that typically result from infection. Yet, they kept assuring me there was none...and I'm the one who needs meds? My neurologist documented differences in strength, balance, and muscle mass, and agreed something was wrong, until all my tests kept coming back fine...then she told me I would have to wait until actual loss a function before I could get a diagnosis. I hit my breaking point, and took a break from Dr.'s for a bit, but the symptoms kept coming.
By this point I had been in bed a lot, and researching about 6 hours a day, deeper than the average medical sites. I ruled out every other disease it could possibly be. I had over 50 symptoms now, and Lyme was the ONLY thing that fit every one of them. I went back to my regular Dr., this time armed with testing and diagnostic guidelines for Lyme Disease, and requested a more specific test. He agreed, then ordered the same crap test I had before, which of course came back negative...and he accepted it! I had a major break down here, but soon decided to take it as a blessing. I already knew from my research, that most Dr.'s, including infectious disease, are even more clueless about treating late stage Lyme than they are about finding it,www.ncbi.nlm.nih.gov/pubmed/20946067 so I continued my search for a Lyme Dr, found an experienced one, and made an appointment.
I was so nervous to meet ANOTHER Dr....this was my last option. So I went in, and with panic in my voice, I told him my entire experience. When I was finished, I was waiting to hear there's no way you could have all those symptoms, and instead he smiled, and said "Well, there's only a handful of things in Northern America with the ability to affect multiple body systems, and where we live it's Lyme". He gave me a clinical diagnosis(based on symptoms/records, not tests)that day, started me on abx immediately, and told me my life was very close to becoming seriously compromised. I was given a test from IGenex(80% accuracy), and 4 weeks later received my results. I was CDC POSITIVE for BOTH late stage chronic infection, AND new active infection! All those Dr.'s over the years(including Mayo Clinic)ignored all the signs multiple times, and I've found this is the case with many people in my situation.
The lack of adequate testing, and knowledgeable Dr.'s should concern everyone. The tests they are using are missing over half the positives, and they're are MANY more that aren't even tested. It has been recently estimated that Lyme is 6x's more common than HIV. It's in the blood supply peopleonlinelibrary.wiley.com/doi/10.1046/j.1537-2995.1989.29789369673.x/abstract, and lives in the donated organs/tissue/bone of mis/undiagnosed people.canlyme.com/2014/01/01/spate-of-fatal-lyme-cases-surprises-health-officials/ Now, you might be in disbelief, and be questioning where I got my information. What I can tell you is there's a lot of politics surrounding this disease right now. You have the IDSA, which is made up of the CDC, and various health corporations, and you have the ILADS, which is made up of Dr.'s/people who have lived through this disease or at least acknowledge Lyme as a chronic illness. www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/
The ILADS group, has different guidelines for diagnosis, and treatment. www.ilads.org/lyme_disease/about_lyme.html They say Lyme is more common than you think, there is much evidence showing bacteria/parasitic infections are behind many autoimmune/mental disorders, and that people are getting better with long term treatment. The CDC, who supply the Dr's with all treatment/education guidelines, says Lyme is extremely rare. No matter how late the infection, you are cured with a maximum 3 months of treatment, and everything left over is just damage from the disease...so take your prescriptions to silence the rest...this has been proven wrong time, and time again. Now go back and look at the list of diseases I said Lyme, and others can mimic, and add up the loss that could be accumulated if it did in fact come out that simple antibiotics could heal many of these people. If one bacteria can cause these symptoms, then so can many, which could be one reason why some people never get a positive Lyme test, but still get better with treatment.
One of these groups has a lot to gain from dismissing the facts, and one is actually getting people better, me being one of them. So, whether you believe what I'm telling you, or not, keep it in the back of your mind. And just so you know, the MINIMUM recommended treatment SHOULD BE 6 WEEKS, not three. The bacteria are killed during replication which is every 4-6 weeks. 3 weeks of abx has been shown in cases to miss the cycle, and/or put it into cyst form, which pretty much means it avoids treatment/immune system until it decides to re-activate. www.ilads.org/lyme_disease/treatment_guidelines.html
Now, I'm not saying everyone has Lyme Disease, or if you have some of the symptoms you're doomed. What I'm saying is if you have ANY auto-immune diagnosis', or you have a few quirks/malfunctions from different areas of the body, then you might want to check it out. Some people are content with their diagnosis, but many like me are in limbo, and/or don't believe the body destroys itself for no reason...it's looking for something...maybe a bacteria with the ability to tunnel so deep into your joints/muscles/organs, that your body has to destroy them to get to it.
Most people improve dramatically with proper(ILADS)treatment, and at the very least stop progression. My Dr. had this himself, and has been treating mid/late stage cases for 30 yrs. He has gotten un/misdiagnosed people of all ages back to walking/talking/thinking again. I've had this a LONG time, so I will be on treatment a minimum of one year, and I'm 6 months in. Proper treatment requires a lot of different components, and brings many ups and downs, mainly because the bacteria emit a toxin when it's killed. The toxins usually increase symptoms, and bring out ones you didn't even know you had yet. This is called a Herx reaction, anyone's who experienced reactions to, or symptoms after antibiotics might want to look that up.
Either way, I'm slowly feeling better, my muscles are coming back, and I'm not as numb, or lightheaded, but some of the neurological symptoms, and the weakness/shakiness are holding strong. The brain takes a long time to heal, and the body won't feel strong until it rebuilds, so it'll be a while. All I can say, is I'm so thankful I trusted myself, and for my husband, and friends who believed me, helped me find answers...and even put up with the emotional meltdowns :). These infections have been destroying my body/brain for a long time, so I'm looking for a new, stronger, more improved version of the person I remember, and I won't stop until I see her! Now, go kill every spider in your house!
Anyone who wants more info...unbelievably, there is more, or help finding where to get the test, or a Dr., feel free to message me. If you decide to start with your Dr., demand a Band Specific Western Blot(still crap, but I would have shown up on this one, but many don't), and regardless of the results get copies, and research what your bands mean.
Thanks to everyone who took the time to read what turned into a novel. I hope I didn't bore you to much, and I hope you're never in this situation, but if you are I pray this helps you.