My name is Joanne (but you can call me Jo). I am currently battling late stage chronic Lyme Disease.
Did you know…. “THERE ARE 5 SUBSPECIES OF BORRELIA BURGDORFERI (Lyme Disease), OVER 100 STRAINS IN THE US, AND 300 STRAINS WORLDWIDE . This diversity is thought to contribute to its ability to evade the immune system and antibiotic therapy, leading to chronic infection” (ilads.org) .
Over 60% of people who are diagnosed with Lyme disease do not get the bulls eye rash. Guess what?! I’m one of the 60%....
Did you know that Lyme disease blood tests are unreliable? Most people will test NEGATIVE for Lyme, even those who show the classic “bulls eye rash” and have “textbook symptoms.” I was VERY lucky that I tested positive.
How did I find out that I have Lyme Disease?
Before my symptoms became severe in February 2016, I had a few small (and critical signs) that I attributed to “normal” aches and pains. -
I've been experiencing odd health issues since the beginning of 2013. Some of these have included a random few days of vertigo, severe stomach pain and reproductive problems.
By 2015… -
I was EXTREMELY tired (all the time) and could not catch up on sleep. I’m not talking about the typical “tired.” This tired is different, like fighting off a cold or flu.
I began getting intermittent dizzy spells that became worse when I was tired.
I was getting migraines & blurry vision at least 2x a week.
I would wake up around 3 am almost every night sweating .
I would get frequent and intermittent hip and knee pain. I attributed this to running and training more frequently.
My hands would lock up – I blamed this on Finals week. As an American Sign Language major, my program at school was demanding. It made sense that my hands hurt.
I would have “weird” things continue to happen, and I would continue to “band-aid” everything. I wrapped my knees when I ran. I wrapped my hips in heating pads at night.
After my body finally had enough of my "band-aid" technique, I was sent one hell of a loud warning message. I began having severe vertigo that was persistent. There was no mistaking that something was wrong. I could no longer wrap and “run on.”
Severe, crippling vertigo spells
Severe ear pain with clogged and full ears
Felt flu like
Low grade fevers
By March 2016, I developed a severe case of TMJ with no apparent cause
I began to slur my words
By April 2016, I began to forget how to spell easy words and forgot how to write these words on paper.
My equilibrium was constantly off
I was always in pain. My body ached all day, every day. I couldn’t understand how my jaw pain could link to body aches and severe fatigue. This is what prompted me to continue to fight for more testing.
After many hours spent being a human lab rat, I was fainally diagnosed with Lyme disease in June 2016.
I remember talking to my mom right after being diagnosed with Lyme. I felt relieved. I remember saying to her .. “at least I no longer need to pay for expensive out-of-network doctors. It’s ‘only’ Lyme Disease. Health insurance covers treatment. Give me a month of Doxycycline and I’ll be good to go.” --> INSERT FOOT IN MOUTH.
I didn’t know it then, but I couldn’t have been more wrong.
LATE STAGE LYME DISEASE WILL NOT BE FIXED WITH ONLY 21 DAYS OF DOXYCYLCINE AND TREATMENT IS NOT COVERED BY INSURANCE.
What is it like to be in treatment for late stage Lyme disease?
This disease is not one of those diseases where treatment makes everything “better.” In fact, it’s quite the opposite. Not only do I have Lyme disease, but I also have two co-infections (other tick bourne illnesses) known as Babesia and Bartonella. Babesia is a cousin to malaria and Bartonella is known as “cat scratch” fever. Co-infections in addition to Lyme Disease results in longer, more intense treatments.
Here is a VERY abridged version of some of the scenarios that I’ve dealt with during treatment. Every day is different and the severity of symptoms are different. I never know what the day will bring. If I have a “good day,” things can change in an instant. I call it “the light switch.”
Some symptoms/issues that I’ve dealt with:
Low heartbeat (45 bpm) (I’ve had to wear 2 heart monitors already, I will be getting another one in a few months).
Low blood pressure (systolic in the 70s / 80s – that number should be 120) – Hospitalized for this.
MONO – Lyme will reactivate dormant viruses in the body.
SIBO – A painful stomach condition caused by Lyme that resulted in a hospital stay. I still have trouble with SIBO. I was hospitalized for severe stomach pain from SIBO.
Candida – Yeast overgrowth in the intestines.
Herxheimer Reactions – also known as “die off” reactions. Lyme grows and dies in cycles. So, every few weeks I will experience a low grade fever and exacerbation of symptoms that will leave me bed bound. These symptoms normally extreme dizziness and joint/body pain. During this time, I cannot sleep. I will typically sweat through multiple outfits and be very shaky all day. My speech will be impaired, and I will be in a “fog.”
Numbness & painful tingling in all extremities – I’ve had to be checked multiple times for blood clots in my legs and brain to make sure these sensations were just Lyme die off reactions. I’ve also had multiple neurological tests done, including an MRI to make sure Lyme has not caused brain lesions. Fortunately, no lesions were found.
Leg and joint pain – Between June – early September I was barely able to walk without limping from the immense pain in my joints. I am very lucky that I did not need a wheelchair. Many Lyme patients do. My joints, specifically my hips and knees, still bother me every single day.
Light/Sound sensitivity – This can quickly turn into migraines which will result in vertigo.
Rib Pain – Yes, you read that right
Other symptoms: lost memory, forgetting letters/words, fevers, impaired speech, vison constantly changing, brain fog, inability to concentrate, dropping things easily (hands would just stop working), overy emotional (seriously-I'd cry if a paperclip fell on the floor),
head/neck/jaw stiffness and pain, equilibrium dysfunction, gall bladder pain, bladder pain, facial numbness, reproductive problems, thyroid dysfunction, multiple vitamin deficiencies, severe nausea, Chest pain, shortness of breath, air hunger and heart palpitations .
There are many more symptoms and experiences that I’ve dealt with, but it would take a novel to list them all.
Do you need just one doctor for Lyme?
NO. Before becoming diagnosed with Lyme, I saw EIGHTEEN doctors (just to get a diagnosis).
Currently as a Lyme patient, I see multiple physicians (in addition to my Lyme Literate Medical Doctor [LLMD]) because I need to constantly “monitor” all symptoms to make sure Lyme hasn’t decide to wreck further havoc on my body.
Here is a list of my “regular” doctors:
Lyme Doctor – Lyme doctors do NOT take insurance. Cardiologist
Primary Care Doctor
Other essential medical providers:
**and depending on the month and how my symptoms are, I may need to see another specialist. This list can grow, quickly.
Is treatment for late stage Lyme Disease covered by insurance?
NO. Lyme Literate Medical Doctors (LLMD) do not accept insurance due to the political nature of the disease. The CDC does not believe chronic Lyme exists, therefore LLMD’s must practice out of network to provide patients with the care that they need.
To read more about Lyme disease and insurance, click this link --> http://www.insurancequotes.com/health/lyme-disease-health-insurance
How much does it cost a month for treatment:
Typically, my treatment costs between $500-$600 per month. This number may go up substantially depending on the amount of supplements/medication that I will need to buy. This number does not include acupuncture & chiropractor costs (or my co-pays for my regular doctor for required check-ups).
A Lyme patient must follow a very strict anti-inflammatory diet. The number above does not include the cost of being required to eat Gluten Free, Diary Free, Soy Free, Sugar Free, NON-GMO and organic foods.
According to my LLMD, I will be in treatment for a minimum of 1 year. Each month, I will be required to cover all costs (out of pocket) associated with my Lyme Disease treatment. There are many months where I have “surprise” costs. For example, this month, I am required to undergo a medical test that costs $400 (and no, it is not covered by insurance). My "normal" estimated $600/month for treatment costs quickly spiked to $800 this month.
Depending on the results of the tests, I’m not too sure what next month’s cost will be. I am extremely fortunate to have a job that allows me to work from home while I recover, however, I am often too sick to complete more than a few hours a day (if any). To help cover my medical bills, I spent the last year draining my savings account. I also created my #whenlifegivesyoulyme tee shirt line to help raise awareness and cover some treatment costs (check it out! www.hunting4spoons.com).
Though the shirts have been getting great feedback, the profits still do not come close to covering monthly treatment costs.
To be honest, creating a gofundme fundraiser was saved as a last resort. I never wanted to publicly reach out for help, however, I am at a point where I need the help. I need this treatment, and I have exhausted all other options.
When I first became sick, I went to 18 different doctors and fought for myself. I fought for a diagnosis, and I will continue to fight for treatment. It may have taken 3 vector borne illnesses to knock me down (Lyme, Babesia & Bartonella), but they will NOT keep me down. Thank you all for your love and support while I continue to fight my way back to health. __________________________________________________________ Though this page is to help raise funds for my treatment, please pay close attention to my symptom list. I’ve met many people who suffer from (or know someone who suffers from) odd debilitating health issues. If you, (or someone you know) is experiencing “weird” and unexplainable health ailments, it is NOT all in your (or their) head. We live on a tick infested island. Lyme is ALWAYS a possibility and should be taken seriously. Despite all my years around horses (and running in the woods), I never fully educated myself about how prevalent this disease is. It does not get enough recognition. It is serious, dangerous, and debilitating.
Note: I am not a doctor, and the information on this page is not medical advice. I share my story in hopes that my experience will help lead someone else to a proper diagnosis.
For more information about Lyme Disease, please visit www.ilads.org.
I am also available to anyone who has questions (or needs help finding a Lyme-Literate Medical Doctor).
My story was recently featured in two blogs.. click the links below to read more about my journey!
LymeLight Stories: https://www.lymelightstories.com/product-page/joanne-from-new-york
Mighty Well Blog:
Check out my website: www.hunting4spoons.com
Wow so much has happened in the last few months. This is going to be another long update.
I’ve learned that I’m resistant to all antibiotics except for the one that I’ve been on for about two years. Unfortunately, this antibiotic only attacks one co infection (babesia), leaving the other two (lyme and bartonella) room to grow out of control. Fortunately, my doctor is an osteopath who still has plenty of tricks up her sleeve. An osteopath practices traditional and alternative medicine.
The treatments that have been helping the most have been intravenous ozone and intravenous silver. Since December, we have been traveling weekly to my Lyme Doctor’s office in New Jersey for my 5 hr infusions.
My body seems to respond best to alternative treatment. Although I feel pretty awful a lot of the time, my blood work has been looking good and we’ve been making progress at killing the infections.
My doctor says that I’ve been sick for a long time before being diagnosed (since at least 2011), so we have a lot of killing and repairing to do. Lyme disease, babesia and bartonella invaded my brain and caused a domino effect of other health problems including:
Neuropathy and nerve damage
Brain inflammation (diagnosed via PET scan)
Low blood pressure and Blood pressure drops
Dysautonomia / POTS
Low Blood sugar and blood sugar crashes
Joint inflammation and pain
Muscle pain, spasms and inflammation
Disequilibrium / vertigo
Odd rashes / reactions
Multiple food intolerances
Gal bladder dysfunction
Yes all of this can happen from ONE tick!!!!!! Lyme disease destroys the immune system and allows other viruses, bacteria and parasites to thrive.
I experience an array of different symptoms that often change daily. Some days I’ll feel good enough to visit with friends and family and other days I need to remain on the couch under a blanket. I haven’t been allowed to drive since October, though I’m hoping I will regain my driving privileges back soon.
As treatment progresses, each issue will improve, but until then, I’m not sure what to expect each day. This can be extremely frustrating but I’m trying to focus on one day at a time.
The most frustrating part of this is the cost. Lyme is not recognized as a chronic illness by the CDC, therefore they do not allow insurance cover treatment costs past 30 days (note: please please please educate yourself and go to lymestats.org or ilads.org to learn REAL facts about Lyme disease). Do NOT read anything put out by the CDC. They have been caught making false statements regarding treatment and progression of the disease. Any resources from the CDC are not viable resources.
Currently, the medical costs continue to rise. My current treatment plan costs are as follows:
IV ozone and silver - $650 / week (yes, you read that right)
Immunotherapy - $300 every 7 weeks
Doctor visits - $200 every 6 weeks (some insurance companies reimburse the visit cost, mine does not).
Supplements / herbs - $100-$200 monthly
Prescriptions - $100-$200 monthly
Regular doctor visits (I’m required to follow up with my primary, cardiologist and Gastro pretty regularly) - $100-$200/ month
Labwork / testing - varies by the month, could be $50-$300 depending on the tests.
When I share this info with my friends and family, I’m normally asked “why aren’t you on IV antibiotics?”
I’d like to share that I’m not on IV antibiotics because I’m allergic to them. An advanced test also showed that I am
resistant to them. So, even if I was on IV antibiotics, it would have done more harm than good. I’m happy to have a doctor who figured this out before putting me on an IV because not only would it have been harmful, it would have been expensive. IV rocephin costs $1400 for the lowest dose, and many people need much higher doses.
It’s sad to know that ALL forms of Lyme treatment are expensive. There is no easy way (or cheap way) out of this. Since the infusions are helping the most, I will continue to need them for foreseeable future.
I still have many obstacles in front of me, but I’m truly grateful to have an incredible support system and a phenomenal doctor.
Thank you all so much for your support and love. It really means the world. I will continue to send updates to let you all know how I’m doing :).
Lyme , Babesia , Bartonella
Lyme viruses: EPV/MONO mycoplasma pneumoniae, Chronic streptococcus, Pneumococcal
Lyme has also caused the following issues:
Severe neuropathy (I now need to see a lyme neurologist in nyc to treat my extensive nerve damage). And no, he doesn’t take insurance either....
I will also need a spinal MRI (to rule out spinal lesions caused by lyme) and a PET scan (to rule out epileptic activity- also caused by lyme)
POTS syndrome -
I was diagnosed with POtS syndrome (postural orthostatic tachycardia syndrome). Basically, when I stand, my blood pressure drops and my heart rate skyrockets, causing me to feel extremely dizzy and sweat profusely. During these episodes, I feel like I can’t breathe. We need to get this under control because if it is not treated, I will eventually start passing out every time I stand. I was recently hospitalized because the stress of this syndrome has caused violent, uncontrollable episodes of shaking along with an extremely high HR.
These diseases have also caused the following:
Low immune system numbers
Elevated liver enzymes (from babesia)
Low T3 function
Gal bladder dysfunction
Vitamin deficiencies and food sensitivities
Low progesterone levels
Neuropathy (burning nerve pain, electricity like pain and twitching).
SIBO/CANDIDA - painful stomach conditions that have affected my ability to eat or keep food down. I am waiting to see yet another specialist for this condition.
My lyme doctor currently has me on LDI (low dose immunotherapy) every 7 weeks for 18 months. This treatment is supposed to help strengthen my immune system so I am strong enough to fight the bacteria.
My Lyme Doctor is an osteopath so she is taking a functional and integrative approach to my case. She recently took a BAH test (special blood test) to see which treatment is going to be the most effective at killing lyme, babesia and bartonella. After the results are in, we will know which treatments we will need to add in.
The doctor bills and treatment costs are only piling higher as each month passes. Currently, my medical costs are as follows:
Follow up with Lyme Doctor every 6-8 weeks $200
LDI every 7 weeks - $300
LDI booster - $50
Monthly supplements - $200 or higher
Lyme neurologist - $200
^if insurance decides not to cover all of the tests that I need done through this doctor, then the cost will jump to anywhere from $200-over $1,000 PER visit. I have to go to him twice this week. We aren’t sure how often I will need to follow up with him.. it will depend on how I handle treatments.
Regular doctor follow ups: $30-$50 per visit to my primary and cardiologist.
I will need to start Acupunture again for pain management. These treatments are $70 per session (once a week) and are not covered by insurance
Depending on the latest results we will also be discussing IV / gluthithone and or ozone therapy because I am too sick to handle aggressive antibiotic therapy. Both of these treatments are over $300 each and could require weekly treatments. I am not sure which she will choose so I will update this when I know more.
These costs do not include any surprise doctor visits, special food costs, special testing, hospital stays or new medicines.
I am so thankful to have so many wonderful people in my corner to support me during this incredibly hard time. You guys all call me a warrior, but everyone around me is also fighting this battle. Lyme affects not just the patient, but the entire family. Thank you all from the bottom of my heart. Your generously and support has helped me move one step closer to getting back my health. I will keep everyone updated as I continue treatment. I am finally in good hands with a team of doctors that know what steps to take to get me better.
Dear Lyme, Babesia and Bartonella,
The jig is up. This is your eviction notice. I’m taking my life back.
A little warrior who is a bigger pain in the ass (and more stubborn) than the three of you combined