Allies EndStage CNS Lyme Disease- in brain +spine
I don’t even know where to begin...I thought my story started 5 years ago when my life became visibly impaired physically and mentally ( to me at least) but this story really began over 20 years ago. I guess I will start with recent events...in 2012 I was tired, just general “ not feeling well”I was tired of being sick, I was tired of being low energy, ( I have thyroid disease, it was out of balance and always blamed on that and it made sense)I was tired of being out of shape so I did what few people are capable of doing and I changed my diet completely.
I started working out and became very interested in bodybuilding... I even started competing and got my personal training certification. In 2013 My ear started popping again ...it would never stop...it would never clear. My head hurt, and I always felt congested. They blamed it on my “TMJ “and gave me muscle relaxers to take before bed and did a surgery to go into my sinus cavity and drilled a hole to widen the area because my nose had been broken several times- but still no relief, same old story, “ You’ve had surgery on your jaw and a car wreck where you hit your face, you will always have pain, your face is numb and frozen because of that.”But then I just became tired...noticeably tired and out of focus.It was like always, blamed on my thyroid disease, so I went to a psychiatrist and was put back on ADHD meds in 2014 which I hadn’t needed since I was about 16.
In 2015, my Endocronologist balanced my thyroid levels for the first time in my life. They have remained balanced until today. But I also developed the worst hormonal acne of my life- I had always had bad skin- I had always had acne, but this was next level. It was blamed on my birth control and I switched and then the dermatologist tried multiple things and I eventually did accutane for a year. The dermatologist said “ don’t be surprised if you have some joint pain during treatment “
Then the injuries started occurring- random injuries from doing nothing. “ Well it must just be accutane”My leg would swell, my ankle would swell, my knee would swell, my left shoulder would swell, I would wake up and not be able to move my neck. I wouldn’t be able to move random body parts. I had always had issues with mobility, but this was next level. Always diagnosed with a strain, or sprain ( never anything on a CT scan/ X-ray or MRI)and I would Ice it, and stay off it a few days and it would get better. I started going to the chiropractor in 2014 continually 1-2 times a week for 5 years. At this point I had been off Accutane for a year.Then the “ injuries” became more restrictive, instead of taking a few days out of my life- they would take weeks. I wouldn’t be able to drive or walk- it felt like my legs would buckle from under me.
Finally doctors would start paying attention ( or so I hoped) I had health insurance, I knew it was always important to have and to cover myself and with my history of autoimmune diseases I thought it was reasonable to always have the most expensive plan( just in case) . So I kept going to the doctor. In Nov 2017, I was driving back from Shreveport and my right foot just gave out while driving. I heard a “ pop” and it fell off the gas pedal and the most intense pain shot up the length of the right side of my body, mainly emitting from the foot.
I managed to make it home, driving with my left leg back to DFW and went to urgent care the next day. Once again nothing on my scans, but no improvement so they sent me off for an MRI of my foot and a referral to a podiatrist and instructions to put my Foot in a boot and stay off it. I wasn’t able to put any pressure on my leg and by the time my podiatrist appointment came around it was still like that- but there was nothing on the MRI ( surely with the amount of pain I was in I thought there must be something broken)so he diagnosed me with sesmoiditis and gave me a round of steroids...within 2 weeks it got “better”. My leg was still not the same, and in pain up and down my leg but it was all put down to bad posture... so In March 2018...I was in so much pain but still managed to walk down the aisle at my wedding and I promised myself when I got home I would request physical therapy because that that must be the issue. It must not have healed right. I must have done something wrong.This whole time, I was being told that maybe I was working out too much, maybe my nutrition wasn’t right, are you taking enough magnesium and iron? Your bloodwork and scans are perfect...there is nothing wrong. So I did a year of physical therapy. It helped, it gave me some mobility, but the pain was always there, and it seemed like the more I fought to get rid of it, I would wake up the next day, and the more pain I would be in.
In August of 2018 things got worse. My rib cage just started hurting. I stretched , I twisted and iced and to no avail. I bought a whole freezer and filled it with ice packs and continually rotated them out. I went to the urgent care again and was diagnosed with an “ intercostal strain” “ don’t worry, these take a long time to heal , like 6 months, you will be in pain- it’s normal”By December of 2018, it was just bad. I was in pain all the time, finding what felt like little knots all over my skin, and I just felt generally unwell again- along with so many more issues I would rather not go into. My issues matched those of someone with a very serious illness, but my main problem was I couldn’t move- the mobility I NEVER had in my body, that I always fought for was amplified. But I looked “great” Not a second of my life was I not in pain, and no one else was helping me, there was nothing physically wrong with me. It was always “ my thyroid” doctors would say “ You are tired because you have thyroid disease, you workout too much, you need to stretch more”
At the end of December 2018, I returned to my Endocronologist for my yearly checkup with my foot back in a boot, it was the only way I could put pressure on my right leg. I see him once a year now because my thyroid is balanced, but the last two years he had seen me, my foot was always in a boot.I told him-“ Please , something is going on, I can’t live like this anymore- will you please test me for lupus or all other autoimmune diseases and muscular issues that show up in bloodwork because no one is taking me seriously, but I can’t really walk.” He calls me 3 days later and all tests were negative. There was something going on, but still medically, nothing. I “ sprained” my ankle 5 times in 2018. By January of 2019 , my best friend said “ Maybe you have MS like your aunt” I replied “ No, that’s a very serious disease, she had migraines, I don’t get those, I just get headaches I don’t think so “ and blew it off.
At this point, I had been in so much noticeable pain for well over a year, that other people were starting to say something . My reply would always be the same as the doctors “ They thought lupus but there’s nothing there, there’s nothing showing up medically, so there’s nothing wrong, I’m probably just getting older, I don’t know “ In the middle of 2018 I had to turn to natural pain relief. No one would treat my pain- I was just a “pill seeker” there’s nothing wrong with you.At this point I had spent over $10k on home therapy equipment- that’s how much pain I was in, I had tried acupuncture for a year, physical therapy, chiropractor for 5 years, massages every other week, but I was no longer able to steadily work- I had given up everything I went to college for ( EMS) and everything I was passionate about ( fitness) because I couldn’t physically do it. My saving grace being my husband- he would support us- he would make ends meet as tight as it was- because he saw the pain- he knew I could no longer do it.
In February of 2019, while at my best friends wedding and getting ready for the ceremony ( matron of honor) I stepped out of the shower and my legs stopped working. I collapsed and fell face first into a solid wood door and broke my nose for the 4th time in my life. This time it was noticeable, this time I couldn’t breathe , this time it happened for no apparent reason. I felt dizzy, and had double vision the rest of the day, I was barely holding it together but made it through the day. The next Monday, I already had an appointment to get it fixed. I just kept telling myself, just suck it up, they say there’s nothing wrong with you. I couldn’t really even convince myself of that anymore. I had already had more issues in my life than any normal person- in fact, I couldn’t compare the issues I had to ANYONE else.
In late March 2019, I was in Shreveport and stretching. I stood up, went to walk out the door and my legs collapsed again- I sprained my right ankle- again. This time- my entire leg swelled up. I drove back home with intense pain all over my body. I couldn’t see straight. But urgent care said “ it was just a sprained ankle”
On April 9th , the day before my birthday I woke up and knew something wasn’t right- I finally looked up symptoms of MS and said “ this is it, I match EVERYTHING, let me call my aunt”
We talked on the phone for a long time and everything matched. Then I went to take a bath to decide how I was going to proceed. Bathing and any hygiene of any sort had become a chore for a while. I was too tired to do any of these things. Heat of any kind weakened me. I had to lay down after. When I went to get up I couldn’t move my legs or my arms. This was new. My husband rushed me to the ER and I couldn’t talk or communicate. I had a stroke but I didn’t have a stroke. There was no brain bleed. They admitted me officially on 4/10/19 - my birthday. I told them “ This is MS it runs in my family- please everything else has been ruled out- please put me through the testing. Please I need an MRI of my brain and spine and a spinal tap. Please figure out what this is”
I was still unable to walk or move my arms. I was 31 years old, it was my birthday, I couldn’t walk and they still weren’t taking me seriously. Upon being admitted, I made sure to deny ALL pain medication so they would take me seriously. At that point I had been dealing with insane pain for almost 2 years - it was nothing new- but this pain- I had never experienced in my life. Every nerve in my body was on fire at full capacity. The neurologist came in and kept questioning me on why I thought this was MS as if having everything else possible ruled out and not being able to walk or move on your birthday wasn’t enough. I knew one thing for sure- something was definitely wrong with my spine.
Surely I was lying to them- they ordered blood test after blood test confirming everything I said.
Neurologist - “ You have two slipped discs- that could be causing everything “
“ But those discs are old injuries from a car wreck years ago- they healed over a long time ago”
“ we will do the MRIs and bloodwork and then we will see but there’s just not enough information right now”
“ please call all my doctors they can confirm and I have HMO I won’t be able to get help or testing done for months, if this is MS it’s only going to progress and I’m already having issues with my vision which is a new thing, please diagnose me, if you guys don’t find out what this is It will get worse”
Neurologist- “ You don’t know that”
After two days- and all the bloodwork that I had ALREADY run before they finally sent me off for the MRI. The hospital lost power “ for the first time ever” and I was stuck in the machine for an extra hour. Little did I know at that point that they didn’t even check my spine like they agreed to.
The doctor came back in the room and told me “ All MRIs were negative “
“ please can you guys run a spinal tap, it’s indicated- my white blood cell count is elevated- that shows up in MS and I still can’t walk ... if you guys discharge me I don’t know what will happen and how long it will take me to get approved for a spinal tap...this is only going to progress if it’s MS and everything else has been ruled out. Please”
“ I don’t want to lose my license “
“ But it’s indicated “
“ We are going to discharge you tomorrow and see if your walking improves . Also , you should talk to a psychiatrist “
“ The psychiatrist is the one who saw how much pain I was in an prescribed me cymbolta for my nerve pain!”
On 4/12/19 I was discharged with no diagnosis and with instructions on how to prevent fall risks. I still couldn’t walk and couldn’t walk for another 6 weeks. We picked up my test results and MRI on the way out of the hospital...they LIED about doing a spinal MRI- they discharged a 31 year old women from the hospital on her birthday unable to walk or move her arms WITHOUT clearing her spine first. Issues stayed consistent and It just continued to happen until May when I was finally written orders to get a spinal tap but my neurologist “ couldn’t do it himself”
I was also told because of your memory loss it could be Parkinson’s or ALS
In April my nose surgeon said “ I see a cyst that looks like it’s been on the side of your jaw for a long time- you need to talk to your oral surgeon that did your jaw surgery again.”
I ran to the dentist and he did CT scans and he gave me a month of amoxicillin - sure enough there were cysts lining my jaw and something growing out of the cadaver bone they placed in my chin 12 years earlier. The scans the plastic surgeon did were taken in the beginning of April and showed a cyst. The scans taken at the hospital showed nothing. The scans the dentist took a week after hospital discharge showed multiple cysts. When I got into an oral surgeon in May- there was nothing in the scans again. “ There is nothing wrong with your jaw. Maybe they thought they saw something or it was an infection that the antibiotics your were put on fixed.”
A nerve conducive test was done- it showed something pressing on my S1 nerve and carpal tunnel- both things ruled out and deemed “ IMPOSSIBLE “ by 3 orthopedic surgeons- nothing was pressing on my S1 nerve. The slipped discs were in my lumbar spine-The S1 nerve can only affect your legs- whydid I have issues with my head and spine? I had never had issues with my hands until I was admitted to the hospital- how did I suddenly have carpal tunnel?
In July I sold my car- my challenger, my baby. I couldn’t work, I had already sacrificed so many things- it wasn’t a big deal if I could just get help and get diagnosed and get treatment for MS. My aunt was doing great now- she was still working- I thought “ that can be you too”
It took until mid September to find the only doctor in network that could do it. In the months leading up to it I went back to every specialist ( cardiologist , rheumatology , Endocronologist AGAIN, gynecologist, 3 orthopedic surgeons, gastroenterologist and many others)like I had previously done thorough out the years- each time with them all suspecting MS and finding nothing. I had been put under 4 times this year for random surgeries and testing procedures and did find cervical cancer during this process which I am very thankful for. It was early and only required surgery. But the conclusion was given by my gynecologist that this shouldn’t of happened. My immune system is not functioning like it should be. There is something else going on. We will need to check you every 4 months for cancer- you aren’t fighting ANYTHING anymore.
It looks like MS, it talks , barks and walks like MS . But we can’t prove it.After all- there was no lesions on my MRis, the only way to prove MS would be a spinal tap. Everything else had been ruled out. The only things that mimic MS are Lyme, lupus, fibromyalgia and lymphoma. And every specialist agreed- I was negative for those and didn’t fully fit into the categories- I had never been bitten, I don’t have fevers, I don’t have kidney or liver issues etc
All the while symptoms getting worse, getting mild, getting worse and then new issues appearing. In September my eyes started getting funny again and I finally met with the spinal surgeon who went on to do my spinal tap at the beginning of October. After the spinal tap, I started rapidly losing vision in my left eye and getting horrible stabbing pains in my head. It was like it was literally cut in half . On Thursday Oct 24th I saw an ophthalmologist and he confirmed there’s something wrong with your optic nerve and lesions in your eye along with depigmentation. What I had said to the neurologist in April about denying my spinal tap had come true. They had threatened my quality of life, they had denied me a test that was medically necessary. And then lied about not being able to do a simple procedure that is done in the ER all the time let alone while you are an admitted patient in a hospital.
My rib cage still hurt. I would sneak in workouts when I could- it slowly went from 6 days a week, to one day a week, to one day a month to I was able to workout 5 times this year. I replaced workouts with yoga. Then I stopped even being able to do that. My days consisted of laying there icing myself, and stretching.
On Sunday, OCT 27th the doctor who performed my spinal tap called me and told me I was negative for everything ( including MS) and that there was no diseases present, viruses , fungus or bacteria. And no demyelination in my spine or Obands or elevated protein which is indicative of MS... I did have elevated white blood cell counts ( lymphocytes in particular) which lead us to believe it was time to get checked for blood cancers or lymphoma. Leukemia also ran in my family. I was to see him Oct 31st and discuss details. I didn’t get that chance. The next day I was back in the ER
That rib cage pain that had never healed just got worse- I couldn’t breathe, it was just spasming- my spleen looked like it was about to burst. They gave me the FIRST actual painkillers ( morphine) that I had been prescribed throughout this entire journey minus surgeries. They finally took me seriously and listened to the voicemail the doctor left. They did and ultrasound of my abdomen and found one of my bilary ducts is enlarged. Something is wrong with one of your organs. My blood pressure was 163/ 120. I had never had high blood pressure in my life. But here it was- actual physical medical evidence- something I had never gotten before.They referred me to an oncologist and a gastroencologist. Finally, some validation, finally someone not asking me if I’d “ seen a psychiatrist “
This situation had gone on for such a long- unnecessary amount of time that it was slowly destroying my body. That 6 months I lost not getting answers and being denied a necessary test had taken its toll.
On Halloween I walked into my surgeons office, so tired, shaking, worn down- because that’s all I am now- in pain, shaking ( literally internally and externally. I can’t control it) limping, sometimes I can walk...sometimes I can’t. Sometimes I have a few “good “days , followed by a few weeks of misery. All the while “ you look great, you look beautiful, you don’t look sick at all”
The doctor opens the door with a big smile on his face and goes “ Lyme disease, you have Lyme disease “
“ But it was negative in all my bloodwork “
“That’s because you have a special type-end stage CNS Lyme. Central nervous system Lyme. It is in your spine and brain.You’ve had it for a very long time, since childhood “
“ and this is really it- nothing else- should I get checked for lymphoma ?”
“ I wouldn’t- you’ll have to deal with this for a very long time, and it won’t go away but you can put it into remission with treatment. Call me if no doctors will take you”
Every single thing about my life finally made sense. After the initial period of disbelief I did my research and everything clicked. Every problem I’ve ever had related to this- I thought I had been only have issues for 5 years- NO
I had only been having debilitating issues for 5 years, children are resilient, I’ve been having issues my whole life, but my immune system was functioning then- I was easily able to overcome them. At some point I couldn’t compensate anymore. Every issue in my life I was able to explain and not many people get that.
What we know is that I got it when I was younger- the strain I have ( there are over 100 strains that’s why it doesn’t show up on a blood test always- I had 6 NEGATIVE Lyme blood tests in the year leading up to diagnosis and I’m sure they gave me one when I entered the ARMY) is from the upper Northeast where Lyme is prevalent. I lived in Maine in a cottage on the sea deep in the middle of the forest for many months when I was a child- the summer after we returned back to Illinois I was diagnosed with ADHD which Lyme is regularly misdiagnosed in children. So that is the most likely situation. But my father also had a farm in Wisconsin growing up, and we regularly went hunting and camping in the Midwest where it is also quite prevalent- I just know I never had a bite mark and it happen very, long ago. After the ADHD diagnosis it was a multitude of issues prevalent in children with Lyme disease and I’m very surprised they didn’t catch it for 20 plus years.
One side of my jaw stopped developing as did my eye on my left side of my face. I eventually went on to need jaw surgery which would have corrected it if it didn’t have an underlying source. Then I got into a car wreck and smacked the left side of my face and that was another easy answer to “ why you are in pain”. Bells Palsy or “ frozen face “ is a common symptom in children with Lyme . They made me do speech therapy and no matter how many times I said “ my tongue doesn’t move like that “ they weren’t getting it. the dentist said “ She has TMJ” - that MUST be causing it.They somehow thought I just didn’t want to participate.
I also had emotional issues and random suicide attempts that I don’t even remember which happens often when Lyme crosses the blood/ brain barrier in children misdiagnosed- I was commited twice in my teens ( a common story in Children with LYME) and they diagnosed me with “ multiple personality disorder “ and anyone who knows me knows I’m crazy- but not THAT crazy.
At 12 I started rapidly losing my vision( my teachers alerted my mom that I wasn’t paying attention and it looked like I couldn’t see the board)- a few years before there was an accident in Mr Z ( a grocery store) where the cashier dropped a bottle of Mr Clean and it got into my eyes and they rushed me to the sink and rinsed it out and I was fine- but it was easy to say “ maybe that’s why it’s happening “I would want to do sports like cheerleading and cross country- and then I wouldn’t be able to physically move like other people and they once again did not understand what I was saying “ It takes practice “ was always said which I understand but my physical responses were not the same. One time while running I felt what I could only describe as my knee coming completely out of place but it was “ fine” when the coach checked it.I was diagnosed with “ scoliosis “ but that also wasn’t true and would always ask my mom for back rubs because I was in pain. It just made me QUIT everything I really wanted to do because I knew it would eventually get to a point where I couldn’t physically handle it.
At 16 I had extreme abdominal pain which often happens with Lyme and they checked and did an enema ...there was nothing there so they said it’s “ probably endometriosis “ and discharged me...if anyone would of stood back and looked at the big picture they probably would of gotten it especially when my thyroid went out at 19( hypothyroidism. lyme imbeds itself into organs and eats them) and then getting diagnosed with Hashimotos at 22. Both things that are not typical in those that are not overweight or in their 30s or 40s. They are very typical in Lyme and usually the first organ it destroys when you don’t catch it in time.There were a lot of other personal things going on in my families life and my dad was often deployed so it was easy to miss and I just went with what doctors were telling my mom.
At 22 I was also admitted to the hospital with severe abdominal pain and they said it was “ PCOS” even though once again I am not overweight or insulin resistant. It just happened to be eating my ovaries at that point and causing cysts. As of this point in time the issue has completely reversed and corrected itself because the problem never existed in the first place. I was also misdiagnosed with celiac - found NOTHING in my colonoscopy this year and a multitude of other things over the years.
I feel like if ONE doctor had stood back and looked at my history they could of ran the Lyme test and it would of shown up in my bloodwork at that point- in fact I think it should be MANDATORY in any child they try to diagnose with ADD.
Lyme disease is called “ the great imitator” or “ the beautiful disease “ because it can mimic anything and everything and YOU WILL NOT LOOK SICK- when in reality I am end stage and my heart could fail at any point in time, any of my organs can go out ( and they are starting to right now), or I can have a stroke. A real one this time. Once it crosses the blood/ brain barrier- it can only be put into remission.
My excitement over diagnosis quickly turned to disappointment in the next few days when I realized no infectious disease doctors we’re going to accept my case.
“ Why is it like this? I have a very serious, late stage infectious disease. Why won’t anybody help me?”
That’s when I learned about CDC regulations not getting changed in 15 years because:
- they don’t have a solution to Lyme disease( it is a medical anomaly)
- Stage 1 when a tick bit you and there is a visible mark responds to treatment
- Stage 2 antibiotics will work for some people but not others
- Stage 3 ( what I have)is for life because biofilm now surrounds the bacteria which antibiotics cannot penetrate. It can be put into remission with constant treatment which insurance will not cover past 28 days
- CDC regulations have not been changed to protect doctors and insurance companies - not patients
- Doctors will not take you because they will only treat by CDC regulations and they know the standards set will not work for me and that insurance will not pay out aka my life is not worth their license
- The few doctors in the country that treat this will not take any form of insurance because they are specialists in high demand for one of the most misunderstood diseases on earth
- The government is very aware of what is happening to lyme patients and they have done nothing to change the law in the last 15 years or put any research and very little federal funding towards it compared to every other deadly disease
- The CDC is aware of all these things- they even know that an estimated 350,000 to 400,000 Americans ( only 35,000 officially reported a year)contract Lyme a year and that insurance will not help them and that doctors won’t treat them because of CDC standards and they still will not change it. That is more than the number of people that contract AIDs or breast cancer and they put plenty of research into that.
- Lyme disease is a SERIOUS infectious disease that kills you fast or slow- different strains work at different speeds
- The government did testing on Lyme years before it was “officially” discovered in 1981 and refused to release information on it which would save research money and time and the information they did release which was court ordered was still blacked out
- Many members of the medical community still fail to recognize Lyme disease because the CDC downplays it’s effects on people- it has caused me to lose my life as I once knew it,it permanently disables many people that get it, they know how hard it is to diagnose ( just look what it’s done to me) and they still fail to recognize it. This will not change until the CDC recognizes it which will then force insurance companies to cover treatment for it
- Most Lyme patients will not be able to put it into remission without years of treatment unpaid by insurance companies. No normal person can afford this ...
- Can you imagine getting diagnosed with cancer and them doing nothing and no doctors taking you. Lyme disease is on the same scale of severity as cancer and is an infectious disease and not one infectious disease doctor will take my case
- They can’t even kill Lyme disease with biofilm surrounding it in a test tube let alone a living being and CDC even says to treat off of ILads Guidelines not CDC but doctors still won’t do it because insurance companies only adhere to CDC guidelines
- There are only a few doctors in the US let alone the world- most of the research programs are being run overseas or on the northeast coast- the majority of Lyme patients will have to travel for treatment that will then not be covered by their insurance companies
- Lyme patients often use doctors initials and speak in code and sign non disclosure agreements so they don’t lay their doctors out to dry - and so they can continue treating other patients without risk of getting sued by insurance companies
- They literally just set you out to die
- They know the sooner you start treatment with Lyme the better outcome- but then they refuse to do what’s necessary to even diagnose you and drop you as a patient once you receive a lyme diagnosis ( I have been told by several doctors in the last few weeks including my neurologist that they cannot help me even deal with the side effects or pain even though I have a diagnosis now- they are that afraid of being sued or dropped by insurance companies for treating out of Lyme protocols)
- Doctors that treat Lyme disease can and have been sued by treating and helping Lyme patients outside of CDC protocols- which is what it takes to treat late stage Lyme
- Any other infectious disease has much longer CDC treatment protocols of 1-2 years . AIDS recommendation for treatment is indefinitely. If y’all don’t understand how messed up this is I can’t explain it any farther- I have an infectious disease in my brain and spine - I should be able to walk into any doctors office anywhere ever and get WHATEVER I want but that isn’t the case
It is so disheartening to spend years searching for what is wrong with you - I’m fully insured and have reached my out of pocket even this year ($20k total )and sold my car and spent all of it on testing to find out WHAT this was to be told “ we can’t help you”
I was expecting to be diagnosed with relapse remitting MS and get started on medication ( even though it is often not covered there are programs to help you- there is no federally funded program to help Lyme patients)
I wouldn’t of needed help from anyone IF this was MS
But the fact of the matter at this point is I WILL need help
In the last few years I’ve been to over 45 doctors and over 100 appointments.
Right now:
- my heart is showing signs of failure ( they will be placing a monitor on me within the next week to see what is happening)
- One of my organs is failing. They are going in on the 25th to look at the same area I’ve been told for over a year was a “ intercostal rib cage strain”( either my pancrease, gullbladder or kidney)
- I have lesions preventing and blocking vision in my left eye
- I have severe neurological damage I will never gain back because of their severe delay in helping me ( I will be having an EEG placed for several days to monitor seizure activity)
- I have reoccurring cysts in my face and jaw and damage from the disease eating away at my jaw area
- My teeth are destroyed because my teeth grind and chatter and click all day and I have no control over it
- I have Lyme arthritis all over my body...this disease is extremely good at hiding...it causes arthritis without swelling and doesn’t show up
- Many more issues those are just the current severe issues it’s been building up to going undiagnosed over 20 years
My only hope is traveling for treatment
and I have an appointment out of state December 10th with a great doctor...but I may be beyond his scope of practice and if so he will refer me to another Lyme specialist on the East’s Coast or in Germany that may be able to help me...I am late stage CNS neurological Lyme and I don’t have any time left if this does not get treated and get treated soon. Doctors here are doing everything necessary to keep me alive- but none of them will treat the SOURCE of my issues - the Lyme disease. In 2011 Texas passed a state law that doctors must become educated in diagnosing , treating and preventing tick borne illness as many patients have to travel out out of state for treatment and it seems nothing has changed. This money will go towards paying for my travel and treatment for approximately ONE YEAR of treatment...I will be needing a PICC Line inserted and that is a sure thing at this point
I will provide links to several documentaries you can watch about Lyme disease and several news articles...I am not trying to scam you, or be lazy- this is REAL stuff about Lyme disease. What we as patients have to go through is ridiculous and it NEEDS to change...no one should be this close to the grave and have to go through fighting to get treatment when they are already FULLY INSURED and no doctors should be afraid to lose their license to treat patients in need. Please help share and spread the word- the more awareness you spread the more likely this is to change. I will frequently be updating and if you took the time to read all this you are a saint.
I’m also throwing around the idea of starting a GoFundMe...I’m not sure which one works better but I’m just desperate to get help at this point.
Videos:
https://www.veoh.com/watch/v42241647FcZ4jc48?fbclid=IwAR2mk4HC76Ta9gQKrBgmvVHnkJS-L-x_7_DefGVQOh8CxMW0Jg46-nB29WQ
Under Our Skin - lyme documentary
There is also an Under Our Skin 2 available for $3 on youtube
https://www.fox5ny.com/video/614435?fbclid=IwAR2VB9l37VI61fjd3vymz3DEv7zY8FMI1FRwbpNqywlW2ByYHcov-zaEwGQ
https://m.youtube.com/watch?v=LuT7STb5lUs&feature=youtu.be
