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You don't realize how detrimental Lyme Disease is to your daily life until you have it. As an athlete, I discovered first hand the damage Lyme Disease has on my every day life. You learn quickly to appreciate the little things in life.
I was full of life and discovery, now I sleep all day to survive. I was misdiagnosed for at least 5 years. The doctors IT WAS DEPRESSION. When I finally was diagnosed, the "standard of care" didn't work and I suffered for another 3 years. I was told by a horrible doctor that I should take out a loan if I care to live. Now I suffer from Chronic Lymes, I'm not ok! I'm sick, sick everyday. Lyme should be treated like any other disease in the media. Attention, like cancer... why are cancer patients treated with the full extent of the healthcare ability and Lyme is NOT!! Cancer patients get better, Lyme sufferers do not.
I live in Colorado and my Lyme Disease story began six months ago when I returned from vacation with family in Minnesota. A little tick that I never saw or had a "Target" lesion from turned my world upside down.
Doctors both inside and out of my HMO said it may be a stroke, then Complex Migraines, possible MS, Encephalitis, Non-Epileptic Seizures, hallucinations, joint pain, arthritis, Petit Mal Seizures and at last Lyme Disease by my Functional Doctor, along with the help of an IGeneX test. I pay out of my own pocket for my visits and medications now but it is my only choice to be treated.
I lost the position at my company that I loved and my car and beautiful home may soon follow. Yet, I know I am the lucky one. There are so many who suffered and passed, hundreds of thousands are still suffering. Those who fought and continue to fight for change. Without them, my friends and family, the information available and my own persistence, I would still be left wondering and wandering.
This is our daughter Madysen and niece Rowan, we just found out the day after her twelfth birthday she has Lyme.
After 15 years of Chronic Lyme and recently learning I suffered a stroke without even knowing it.. . it's time I STAND UP AND ROAR!!!! How can these organizations stand in our way of getting proper treatment for a debilitating chronic disease that some even say does not exist!!! Children, playing in the woods... no signs... no advanced warning "WATCH OUT FOR THE TICKS" as they can cripple you, leave you with horrendous pain, affect your brain / memory, give you the most extreme fatigue you have ever felt in your life and for me.... heart problems! How would these politicians, pharmaceutical companies and insurance companies feel if it was their children suffering from Chronic Lyme? I now have a picc line to look forward to that hopefully will help my heart with new antibiotics. Don't let this continue. Stand up and help the millions who know they have Chronic Lyme and who knows how many millions more that have been misdiagnosed with MS, Chronic Fatigue, Fibromyalgia and others This is our daughter Madysen and niece Rowan, we just found out the day after her twelfth birthday she has Lyme.
Guess what??? Lyme Disease IS IN Michigan and I have it!
Dana Biscotti Myskowski
Dana Biscotti Myskowski
Clinically, my story began 11/29/11, with so much blood in my urine, it looked like cherry soda. While antibiotics were prescribed, no infection was detected. Bladder cancer was ruled out first. When my urologist could not find a cause, in March 2012 an OB/Gyn diagnosed Interstitial Cystitis. A limited diet helped nurse me back to some bladder health, along with help from P.T. and counseling. Vulvodynia & Fibromyalgia came next, and a rheumatologist and an aquatherapist were added to my caregivers. Peripheral Neuropathy was diagnosed by my neurologist; my podiatrist fitted me with insteps for my sore feet, while my physician suggested I sleep with wrist braces for my carpel tunnel. A massage therapist, plus yoga, helped with my severe neck pain, and meds were prescribed for depression, under-active thyroid, and constant pain. When an infection sent me to the ER last June, resulting in 4 wks of antibiotics in which I felt GREAT, my MD said: Lyme. Tests & treatment confirm. Soon better!
After coming down with multiple diseases & neurological symptoms, I asked to be tested for Lyme. I had lived in the most Lyme endemic areas & had five cats & at one time a dog (all slept on the bed at different times. I lived directly beside a forest for many years, both in Europe & Canada & the animals sometimes brought home ticks. Got bitten by whatever many times but didn't know about Lyme. First 2 Eliza tests in Alberta showed that I was POSITIVE on IgG only (several bands including important ones) for 3 types of Borrelia: Afzelli, Garinii, & Burgdorferi. Was then given Western blot test in Alberta & that POSIITIVE for Afzelli. This was NOT followed up by a test of the same sort, but rather by a Euro-immune Western blot in Alberta. That test turned out negative & was NOT followed up by a test of the same sort. After 2 weeks of Doxy100 IgG was still POSITIVE w/IGeneX. My med records state they are UNSURE if I have Lyme. Further questions are banned!
I love hospitals so much I used to spend most of my time there. That is, as a Director of Marketing for a national health care company. I used to fly all over the country until permanently grounded by an enemy I couldn't even see. Bitten by a tick in the early 90's, misdiagnosed by a dozen docs and way too many bucks, until I finally found a brave physician who saw and told me the truth. I had both LD and babesiosis. Saving what was left of my life, she found encephalopathy and a spine that felt like an old, abandoned railroad track - stenosis, bulging discs, you name it. I have significant chronic pain and fatigue, as well as confusion, inability to concentrate or remember. And depression. People say I look just fine as I struggle to stand up straight with an unstable spine. My neck a painful toothpick holding up a bowling ball. Did I mention yawn lines? Now I see health care from the other side and like the tick, it sucks. My LLMD's are much appreciated and keep me sane.
I'm Ana, I was dx: with a positive Lyme titer in 2002, 8 years after I found a tick in my skull. I was treated with 30 days of antibiotic's. I have been in and out of the hospital for a various of illness ranging from, vertigo with severe vomiting. Sensitive to light, my head was spinning and I could not pick up my head. Internal cranial pressure, which I have to have spinal tap every month to remove the pressure in my brain. Epilepsy, headaches, pituitary tumor, lesions on my spine, neurological shaking of legs, hands. Head. Blindness, MRSA, STAFF, shingles in my nose and my face and my back. Pick lines,portacathes. Severe D deficiency, and the epilepsy meds ate my teeth out. I was DX: RA my hands hurts so bad, my knee's r bad. My shoulder's r bad. I had RA flare which I thought I was gonna die! I was in so much pain! I cannot walk. I have nite sweats, I can only sleep couple of hours. Now I have heart problems. Fluid around my heart. I'm on 17 meds. I'm suffering a painful death
I got Lyme about 7 years ago while I was hunting for morel mushrooms. I didn't notice the tick until days later. No blood test was given-the doctor saw my bullseye and high fever and said I needed antibiotics. The headache is what I remember most, feeling like an awful hangover without the fun of the night before. I still get these headaches; they're very specific and pain relievers don't touch them. I have pain every day at every moment, most of which I can get used to. Unfortunately the pain has rendered me unable to do more than basic self care:eating, bathing, laundry, etc. just to maintain a healthy image. I started noticing neurological problems about four years ago when I was in my last year of college. Now they are very severe. When I speak, words in my sentences get mixed up. Numbers flip around. My vision has gone bad, sometimes I cannot read. I don't remember events and people in my life. I am now working at a school part time because I cannot teach full time.
I was bitten by a tick at 15. At the time my boyfriend simply burned it off and I went on with my life. At 32 I met a friend online that had Lyme Disease. She asked me to print off a symptom checklist and have my husband fill it out. I handed it off to my husband and he ended up checking off 99% of what was on the list. From there I went and got tested and they said take 30 days of antibiotics and I would be fine. So I took the antibiotics and went on with my life. A year later (summer 2013) I went to a new holistic doctor and she retested me for Lyme and it was positive again. My husband and I started hunting for someone who could not only handle the Lyme but could do it safely since I have Celiac Disease. We finally found someone and I'm using Meso Silver to get rid of the Lyme. However it is not covered by insurance so I have had to start an Etsy shop selling dog toys to be able to afford treatment.
Our son, Nolan, was diagnosed by Igenex in December of 2011 when he was 6 years old. Nolan has always had a love for nature and living in Maine has allowed him to grow up "outside". His nickname is Bug Boy, as he can't seem to get enough of living creatures and continually catches and releases any of them, big or small. From the moment he wakes he ventures out to see what kind of creature may be out and about in the yard. He is very patient and if any of them are in harm or hurt, he nurses them back to their environment. Nolan was treated for Lyme for 1 1/2 years. His energy and health is as any normal 8 years! He can play sports again, he can get through the day without needing 3 naps and we are hopeful for his future and so grateful to those who have supported him and especially to his friends. In this photo they helped him to celebrate his 8th birthday by going on an outdoor adventure wearing Lyme Green and a bracelet that reads BEAT IT LYME DISEASE.
I struggled with digestive issues and severe foot pain for over two years, fatigue even longer, went to several MDs looking for answers. Had a colonoscopy, and nerve study. Went to podiatrist, physical therapist, acupuncture, chiropractor, massage... and all kinds of dietary changes. Had countless labs run. Doctors kept saying it was stress and recommending I try antidepressants or anti-seizure meds for the pain. All the while, it was Lyme disease. Not sure how long I actually have had it. Determined to defeat it.
Name: Raf. Age: 20 What did you do before you became ill: training joined. When was you sick: March 2010 what were your symptoms: the question is about the past tense, however, I'm not yet healed. Because of this, it is not clear to me whether there is asked about the complaints at the start (read: March 2010) or my current. Initially: fatigue. Over the years, there were complaints to including respectively fatigue, joint pain, dizziness, cognitive diminution (problems with concentration, memory ...) that over time, steadily rose strongly. How long did it take for you got the correct diagnosis: 3 years (rounded) experiences with health care :/ none. What have you lost and have to give up or by Lyme: friends, theoretically driving license and the corresponding practice lessons. Many hobbies/pursuits with which I filled my free time. Where do we go from here with your: physical: worse than before. If you could change something to the Lyme approach in Belgium, what would it be?
A worried mum does more research then the FBI. Spreading awareness to help my son.
I was diagnosed w/ Lyme Dec 08' I had neuro, cardiac, & arthritic symptoms. I did the standard therapy doxycycline for 4 weeks. Blood work showed we caught it early so we were positive. Symptoms went away. June 12' I developed symptoms difficulty with cognition, swallowing, slurred speech, muscle weakness, neuropathy, neuralgia, heart palpitations, intolerance to heat, fatigue, among others. It seemed new symptoms appeared daily. 17 doctors to find 1 to begin treatment. Nerve studies showed my sensory/motor nerves were demyelinating & my neurologist said Lyme wouldn't progress this fast. I insisted it was Lyme to every doctor, I was laughed at. We started non-pulsing oral therapy symptoms got better, but they came back. I found Dr. Jemsek. We began IV therapy The care they have provided has enabled my nerves to regenerate & for me to begin to regain my life. I'm on oral therapy now and am about 85% better. I am so grateful to him, he has given me my life back.
Hi I'm Sadie, I think ILADS is so important. I was a vibrant 39 year old with lots of energy and owned a massage business and a massage school. We moved to our new home in a wooded area in Spring of 1991. I started getting many weird symptoms, chronic flu, fatigue, panic attacks, brain fog, joint pain, etc. Doctors tested and ruled out so many diseases; but not Lyme since I live in the South. I definitely had a huge bulls eye rash under my arm but thought It was a spider bite so I didn't go to a doctor. I was sent on the rheumatology route and diagnosed with CFS, Fibromyalgia and Lupus. Since working in natural healing I didn't believe a young healthy woman could become so sick so quick without reason. By 1999 I had lost my businesses and was in bed disabled. I treated myself with lots of good nutrition, herbs, lots of cleansing and massage. I have my life back! I tested positive for Lyme after 21 years. Lyme causes a lot of unnecessary physical, emotional and financial pain.
My story goes back almost 14 years now. In 2005 I started having more problems with insomnia. I was looking for work and not insured. This caused me some stress. I also went off an anti-depressant which I thought at the time was making me so fatigued since it was a sedative. When I did that it seemed it set into motion this awful cascade of other issues. Shoot forward 3 years. Now I am dealing with flu like symptoms. No idea why and went to multiple dr.s Started treating for hypothyroid in 2010 and had SOME improvement and YET it didn't STAY stable. Not until this past November was I diagnosed with Lyme. What a relief and also dread. So much left unknown. The way we diagnose and treat this disease has got to get better. In spite of the HUGE impact it has had on my daily functioning I am SO thankful for God's sustaining grace and healing presence that has got me this far. Thanks ILADS for ALL you do to educate and empower others. God Bless!!
I contracted Lyme in September of 2003, with a rash that developed three days after returning home from a six-week trip to New England. For five and a half years, I went to doctors with various illnesses and strange symptoms that became increasingly debilitating as time went on. Finally, in December 2008 a friend with Lyme disease suggested that I be tested for Lyme disease. She referred me to an LLMD and I tested positive...for six tick-borne infections. We're now 10 and a half years (and over $100k) into this journey, half of which we have been actively trying to get treatment, and actively trying to do battle with the arrogant ignorance associated with this terrible illness. My husband and I deeply appreciate the efforts and progress that ILADS is making in behalf of those suffering with Lyme. The only way to effectively fight this epidemic is through awareness, education and prevention.
My name is Cynthia Knight. I am a 50 year old woman, single mother of four children and two grandchildren. I was an avid runner, and participated in many marathons and other races and relays. I decided to return to school at the University of Utah in the summer of 2008 to finish my education started 25 years prior. I graduated with a Master of Social Work in 2012. I started having mild signs of Lyme for two decades, however, in Junw 2009, I was again bit by a tic. My doctor, Andrew Peterson, D.O believes I was probably bit many years ago but was able to fight the bacteria with a strong immune system. In June 2009, my life changed dramatically with every symptom imaginable. I was diagnosed in Nov. 2013 and started treatment. I know I will get better and have the opportunity to combine my MSW with Lyme disease. For now, during treatment with all the ups and downs, I will be an AMBASSADOR and ROAR the message to promote awareness of the disease, the politics and overall, TRUTH!!!
What this illness stole from me?
Do you know who I even am?
Do you see me desperately clinging to live?
Do you know how hard I've been actively fighting hanging on a a cliff not to fall?!
Do you know this disease and exactly what and how it has effected my life?
You may say you do.
You don't even know me
I don't even know me.
I need to know me.
I want to LIVE so bad it pains me to not be seen as such scrutiny
TO TEARS, I lost all hope almost!
You say you know
You don't have a clue
I have been battery operated since birth by a tick or age 1
So do not say you know me
I do not know me
I want to have a chance at a LIFE WORTH LIVING
JUST A CHANCE
To find me! To LIVE -
Lyme has afflicted my family since 2000 when my aunt became ill. She died in 2004 from complications, but soon some more members of my family were infected. I think I've had Lyme since 2005 when I was bit by a rogue dog and had to be treated with a tetanus shot. In 2012 I was hospitalized with a weird case of Cat Scratch Disease. For 7 days I lay in a hospital bed with this infection and had an IV of antibiotics pumped into me. Not one doctor told me that Bartonella was a co-infection of Lyme. After my release I continued a decline in health. None of the doctors supported my belief that I had Lyme. Each Western Blot showed a negative result. They mocked me: "No one has Lyme disease" they said. Finally, a naturopathic doctor confirmed Lyme, Bartonella, Mycoplasma. I am getting treatment at last!
I got hurt 5-17-1984, caused the onset of Fibromyalgia. 1991 finally diagnosed FMS. Sent to pain specialist via my CA WCAB judge! Ugh.....had every drug thown at me, been sick from them all. My condition kept falling, loosing ground each year. I've seen over 50-doctors now. Had hundreds of tests. Got stuck with a pain specialist, installs morphine pumps, kept me well drugged for over 10-years. I found a Functional Medicine doc who now has his practice in ruins. Went to OHSU in Portland, they mentioned Lyme. Hurrah! My pain doc did too! I've built a great team but no Lyme Literate
Finally, a friend with Lyme said, 'Deb you have Lyme'. I coined the term, 'Walking Rigor mortise' to describe it. I feel like my body is turning into stone. No answers for 30-years. Finally, on this Amtrac journey, I found out why I've been increasingly sick. In fact I nearly died with cardiac issues last Summer.This is me very excited to finally talk to the right doctors. Turns out, I do in fact have Lyme
I am 33 years old and have been suffering with chronic lyme disease for at least the last 5 years. I have extreme fatigue, wandering pain, dysautonomia, temperature regulation problems, and cognitive dysfunction that does not allow me to process visual information at a normal speed leaving me very dizzy.
I was headed on a great path and this illness has taken so much of my life away. My family and friends suffer with me as they watch the ways in which being chronically ill has held me back from living a full and happy life.
On some level I do believe there is hope. I am about 50% better than I was a few years ago.
I can't keep up with those around me, but I AM back at the gym, which is one of my passions.
People do not realize the severe isolation, depression, and devastating effects this illness has on those suffering.
Thank you so much for your page!
I think I've been infected with Lyme Disease and Co-infections for at least 15 years. I was diagnosed in 2013 after two years of going to specialists and testing for so many things. I have Lyme, Bartonella and Babesia. Now that I'm 4 months into treatment, I am slowly getting better. I want the CDC to protect our LLMDs and stop making testing so hard to get. I also want them to start treating chronic Lyme as a serious epidemic tick-borne disease, not just in the US, but all over! We should have our insurance cover our needs, just like any other disease. We should not have to spend countless dollars to get treatment that we deserve! I'm a Lyme Warrior and will fight this no matter what, but it would be a lot easier if my insurance covered my office visits to my LLMD. This disease is debilitating, psychological damaging, costly and very lonely. Let's all stand together to make our stories be heard by those that need to hear them!
My frustration is in that once I got a diag. which I had to suggest to the dr. after looking for toxins in and around my home stumbled on LYME while looking for lime in concrete....
Once the diag. was found nothing was said other then you have Lyme.
Over a month later it dawned on me my meds weren't changed. I then went looking further and found "it's not curable" what an awakening! Why didn't my dr. tell me that?
why am I being refused for MRI"s cat scans and spect scans? No further testing other then the blood test and normal serum tests for "menopausal" women....
It's been over 3 years now and still no testing, only doxi. and mono. LLMD found but wasn't for me, and no others will treat in my area. Would have to travel over 4 hours to see another LLMD.
Our MD need leway to test and treat. INS needs to pay for diag.
I have had lyme disease for two years now. I am 16 years old and find it a daily struggle to participate within daily routines due to the cruical pain of my joints. Every morning and every night, I find it harder to get out of bed or even stand on my own two feet due to this pain. I hope that one day, there will be a permanent cure to this disease, because anyone who must live with this pain does not deserve it what so ever.
Two years ago I went to the hospital with 103 fever and a white blood cell count over 20,000. I had noticed a bite two weeks prior; however it was no longer there when I went to the hospital. I was diagnosed with lyme and put on Doxy. l was instructed to follow up with an ID doctor as I had been out of the country a few weeks prior to noticing the bite. The ID doctor directed me to stop taking Doxy after seven days as he did not believe lyme was the cause of the illness. At that time I had felt better so the doctor had told me there was no longer a need for me to be on medication. Over the next two years I have developed night sweats, low body temp, muscle spasms, dizziness and chronic headaches as well as chronic pain under my right rib and in my back. I have been treated with minocyclyne and zithromax for two months; however I am not getting better and my doctor has told me there is nothing more she can do for me. Feeling frustrated and looking for help.
Novemer 2013 my daughter and I were both diagnosed with Lyme disease. I am married to a physician and it still took 13 years to get the right diagnosis.
Lyme Disease is is widely misunderstood and misdiagnosed. Patients like me are robbed of their lives, and slowly but surely head toward death as their suppressed immune systems inevitably fail.
My diagnosis - Late-Stage Neurological Lyme Disease - is insidious, debilitating, and certainly life-threatening. After an exhausting 20-year fight with this wicked disease, my body almost completely shut down in the Spring of 2012. I am a mother, but am now unable to care for my two beautiful children without help. I am a graphic designer, but am now unable to work at all.
The aggressive treatment that I desperately need is not covered by insurance. We have spent $100k so far, and I am only approximately halfway through the 2-year treatment.
AND THE LOSS OF LIFE. CHANGE THE SYSTEM.
My story simply begins with some strange symptoms a week or two into the summer lawn mowing season. After a miss-diagnosed case of Cellulitus I discovered that I had Lyme's Disease. I'd heard of the disease before but had no clue how bad it could get and how much controversy there is in the medical community surrounding the disease. My personal experience to date has been wrought with inconsistent prognosis, and treatment options leaving me wondering if this isn't another big Pharmy attempt to turn Lyme's into the next big cash crop, like they've done with Type 2 Diabetes (which I have as well). It's unfortunate for those, like myself, who have contracted this disease, because we have no really clarity about what we can expect, how it can be successfully treated, or where or not it will physically ruin our lives. In closing, I am hoping that some of the Medical Naysayers would contract Lyme's and personally experience the symptoms to see that they are REAL! People need a cure!
In October 2012, all in my life was fine. Then a series of events turned my life upside down - I was diagnosed in Nov 2012 with Chronic Venous Insufficiency (seep and surface veins), then with Erythromelalgia in Aug 2013 and, after a large number of tests, was diagnosed with Lyme Disease in Feb 2014. I now am severely diasbled, medically retired (incurable CVI and Erythromelalgia alone was enough) and can see the "fight" people who truly have Lyme Disease are up against in Australia and other parts of the world. The only guidelins I can see that make sense and can help are those from ILADS - I am following Burrascano's Guidelens...but, despite help from a wonderful local GP, there are no Lyme specialists in Australia. I am fortunate to have enough money to fund treatment, at least for some years, but really want Lyme to be recognised as being carried by Australian fauna, and to see a proper focus on treatment for fair and equitable patients and support for Lyme doctors.
I was disabled in 2012, going from doctor to doctor for a year. Previously I was an extremely fit father of two, participating in endurance athletic events regularly. Not many folks in Southern California know about Lyme disease, so it took a lot of searching. Finally, a friend in New York and I talked; she had very similar things happening to her. She told me to get tested by IgeneX. Sure enough I was positive. Then began the search for help. After not feeling confident in doctors in Southern California, and talking to a new internet friend who became my "coach", I went to the Bay Area for a doctor appointment. I have a long way to go, but I'm hopeful
Subject|. The other side of lymes
Both here and on other lymes sites I see many interviews with people who have lymes, ride bikes for lymes, do PSA's for lymes. Most of these people have lymes.
They are always grinning and healthy looking and give the impression that lymes isn't all that bad.
It's time to show what the rest of us look and feel like. Myself, infected at age 18 in 1974. Undiagnosed for 30 years. 10 years of EVERY protocol out there. Had about 4 "good years". Now 58, it's back and I am sicker than ever. Bedridden. Losing weight rapidly. Out of options.
We see commercials of starving , fly ridden children in Africa ? Why not lymes sufferers?
We know that lymes disease has been confirmed in every state in the US by veterinarians. Why not put THAT finding to mainstream doctors who continue to dismiss us ?
A 10 minute review of blogs and Facebook reveals tens of thousands of sufferers. Why not highlight that ? Thank you.
Diagnosed with Lyme disease in Sept 2009, after two long stays in the ER and being hospitalized for a few days. According to doctor I was infected about 2 weeks. Both times before I went to the ER I had a headache-referred to as a wave headache and extremely high fever. The headache pain would go back and forth above and behind my eyes, as it moved the pain moved with it, if the headache stood still I would have gone crazy. Both visits to the ER they found nothing wrong after many tests (including Lyme) and given morphine for pain, then hospitalized. I was treated with antibiotics in pill form and then concluding with PICC (Peripherally inserted central catheter), through Dec 2009. I was blessed with an excellent infectious disease doctor. However, to this day I have repercussions (fatigue, increased depression, nerve pain and tingling-extreme skin sensitivity to touch [almost a sunburn sense] difficulties with concentration, joint and muscle pain and sometimes weakness) from disease.
Peer van der Zanden
Peer van der Zanden
New very strong but simple treatment to cure chronic Lyme desease completely:
In the year 1994 I got Lyme desease which became chronic (persistant), however I found out a simple natural biological treatment and cured myself in 2009 completely in a miracle way.
I have done tests on myself to find out the complete detailed treatment for recovery.
I have found proof by blood tests in a lab in Germany for the clinical results of this new medicin drug to treat Lyme for 100% in a cheap and easy natural way.
My treatment is based on the natural antibiotic Carvacrol which is found in the wild Oregano plant.
I hope that ILADS will invite and help me to publish my complete story and so we can help other Lyme patients all over the world to be cured.
This story is so difficult to tell regarding my daughter's fight for the last 11 yrs since the age of 15. No one believed my daughter when she said she didn't feel good in 2003. So she devloped Arthrtis, heart arrythmia,, rash, hair falling out,headaches, wound up in a wheelchair.She was finally diagnosed with Lyme Disease in 2009. By 2011 it went to her brain. March 2014 she was comitted to a psychiatric hospital for pushing me on the concrete floor and landing on the wall. My daughter does not remember all the things she was doing, yelling, screaming, cursing for hrs and hrs, flooding the house, almost burning the kitchen. Vomit on the floor , food on the walls, floor on and on.
Physicans and the public Health Dept have to be made aware of this Disease that it can happen anywhere in the states and world. It made me sick how many physicians laughed at me and said my daughter doesn't have Lyme in FLORIDA.
Today after 11 yrs of fighting for her, I got my daughter back. ticktoc.me
As I didn't know back then, I can only relate some symptoms to Lyme now they have me diagnosed. It first started off with a rheumatic knee for 3 days.
Then I went on exchange to Italy for Engineering , there meningitis symptoms started to appear: First a week of strong dizziness, going through the streets I really had a drunkard pace, then I suffered from continues headaches and possibly fevers at night. Hairloss, I didn't get any periods anymore. Nausea, an inevitable need to lie down and immediatly fall asleep. A few months later, back in Holland, I lied on my bed for 2 weeks with constant fever and headaches. When I felt better I got back to my friends drank cold one and suddenly lost the ability to speak normally. That's when I was brought into the hospital and tested for Bb. Then I got ceftraxion through infusion for 2 weeks and now they explain my paraesthesia and insomnia with my immunsystem batteling the borrelia damaging my nerves a bit
We have a 12-year old son, who has recently diagnosed ALS !!!???
About a year ago it all begun when his right arm weakened and start shaking. At the beginning of year 2014 his left arm started to lose mobilitiy ja muscles. One day we remembered a tick bite in his left arm about 2 years ago. It was a little wart and it was blue / purple. We didn´t pay attention to it, because we thouhgt it wasn´t serious. In MRI was also found cyst in his brains frontal lobe. We have read that borreliosis creates cysts to protect itself from antibiotics.Within 1.5 years these symptoms begun and now he has diagnosed ALS. We can´t believe in diagnosis, because it´s so rare in so young age and we suspect it´s Lyme desease that causes all these symptoms. Doctors here in Finland don´t believe in chronic Lyme disease so it´s very difficult to find a doctor who would treat our son. He is in very weak condition, he has now troubles swallowing and controlling his neckmuscles.
Lyme/Bartonella co-infection cost me my marriage, my 5 kids, my businees and nearly cost me my life. I was undiagnosed for at least 5 years. Even though I was destitute, Dr. Denise Clark, a compassionte and skilled naturopath in Boulder, CO helped bring me back to life. Unfortunately, an extreme herxheimer reaction landed me in jail when I should have been taken to the hospital. I am fighting the charges but Lyme is so misunderstood its an uphill battle. Thank you ILADS (and TBDA) for all you do to raise awareness, education, diagnosis and treatment.
My name is sandy.. and I believe I have probably had lyme for a long time....I used to live in the North.. and spent many years on Fire Island... for the last seven years we would spend summers in Vermont... so one place or the other.. it got me.. I spent months with regular Dr's. from internists to neurologists.. all with the same answer.. WE FIND NOTHNG WRONG! My favorite was the suggestion from the head of neurology.... "why don't you try Anti-depressants"! It was time to get some answers!! I finally got the right test.. and bingo!! LYME! along of course with auto-immune and high mercury.. not uncommon.. I hate labels.. but at least i knew finally what I was dealing with....Its been frustrating to say the least.. there are no answers and there are a million answers... the journey is individual.. what works for one person does not work for another.Keep searching and Fight Fight Fight! Some of the answers lie inside us! Make the changes necessary,.do the work..and reap the rewards
Multiple tick bites in early childhood. First Auto-immune disease diagnosed at age 10, second auto-immune disease at age 32, Total thyroidectomy in 2012. After my surgeru, I was practically unable to walk due to severe joint and spinal pain. I was very fatigued, constant headaches, vision disturbances, ears ringing, dizzy. I had to quit my job as a Registered Nurse in the ICU because I could no longer perform my duties. I saw Doctor after doctor with NO answers or explanation. I was falsely diagnosed with MS, Rheumatoid Arthritis and Lupus. The Rheumatologist I saw DID test me for Lyme, but the LabCorp WB came back negative (just like so many do!) I sought out a LLMD and we tested me through Igenex Labs, and I am CDC positive for Lyme. Now Completely disabled, Unable to even get out of bed most days. Finally starting treatment and hoping for improvements soon! We need better diagnostics and more Lyme Literate MDs to help! We need better treatment guidelines too!
I was infected with lyme in nj at 15. Was treated late as doc thought my rash was ringworm in which it was a lyme rash. I am now 41. I was also diagnosed with ebv, parvo virus, hhcv, as well as ms seven years ago. I now live in coastal north carolina. Was recently bitten by a tick again in my yard in n.c. and lyme positive. Docs in nc think there is no lyme here so I was not suffficiently treated until a month later until my tests came back positive with unresolved symptoms. Doc here folowed id protocol of three doxy pills as preventativly which DIDNT work. Doc was surprised it didnt work and I was lyme positive but I wasnt. I am married with two beautiful preteen kids. My son sufferers from lyme and bartonella. This disease has caused severe health issues to our family. Unfortunately lyme ignorance still prevails and people are suffering. Things havent changed since 25 years ago! The madness of denial has to stop...we must move forward with truth and a cure!