Walker's Medical Fund

Dealing with severe ME/CFS as a result of Lyme and EBV.

As of June, 2019 I was also recently diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), and Craniocervical Instability (CCI), the last of which was confirmed by consulting with two expert neurosurgeons.  Being diagnosed with CCI means that the ligaments in my craniocervical junction (where the spine meets the skull) are weakened, resulting in my skull sinking down into my spine and spine compressing/crushing my brainstem. This causes really awful and severe autonomic and neurological symptoms on top of my ME/CFS symptoms. CCI is a debilitating and sometimes life-threatening condition when left untreated. I am currently exploring treatments for CCI, possibly in the form of a fusion surgery to correct the brainstem compression. Treatment for CCI could relieve a lot of my symptoms, but the costs of further testing and imaging, on top of the expenses of treatment, are currently a huge roadblock.

More can be read about the connection between ME/CFS and CCI here: https://www.mechanicalbasis.org/. This a patient’s story detailing his experience of being diagnosed with CCI while severely ill with ME/CFS, his treatment, and how he is doing after surgery.

(Me in my cervical collar that somewhat helps with my symptoms)


Below is a brief history of my illness, but check out the updates for how I've been doing recently (June 2019)

I was first diagnosed with Lyme disease in the summer of 2016, after working in the woods in central vermont harvesting trees for a nursery.   I had a fever and headaches and chills for days before I noticed the rash in shape of a bullseye.  I was treated for it with a short course of antibiotics and felt better for a little while until my symptoms started to return in the fall. Since then, I have experienced really debilitating symptoms including brain fog, dizziness, memory problems, chronic fatigue that isn't ameliorated by anything and worsens with exertion,  and severe insomnia.  I have been to several specialists without finding relief for symptoms yet.  The Infectious Disease doctor I've seen said that my symptoms were a result of "Post Treatment Lyme Disease Syndrome," which is a somewhat nebulous diagnostic category that basically means "patient has symptoms after a normal course of antibiotic treatment and we don't know why".  He didn't deny my symptoms were real, but had no real idea how to treat them.

After going to several different specialists with very little clarity about what was going on, I was diagnosed with ME/CFS by one of the top ME/CFS specialists in the country, Susan Levine in NYC.  She is an Infectious Disease doctor and Immunologist who focuses on treating ME/CFS patients and also does research in this area.  This gave me some clarity, but still this doctor was somewhat blunt and pessimistic about the degree to which cures are possible in this disease.  Nevertheless we have been trying a lot of different treatments, done antivirals based on high viral titers, tried treatments for low blood volume, antibiotics and anti-inflammatories, etc.  I have also been diagnosed with hypothyroidism.

ME/CFS is a complex and often debilitating multisystem disease.  The etiology is somewhat unknown but there are immune system abnormalities ( https://www.pnas.org/content/114/34/E7150), blood volume/autonomic issues ( https://openheart.bmj.com/content/3/1/e000381), metabolic issues (https://www.pnas.org/content/113/37/E547), (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5161229/), and neurological issues, perhaps secondary to structural cerebrospinal issues ( https://www.ncbi.nlm.nih.gov/pubmed/29391028).  Prognosis is often poor.  

Based on my immune labs, several doctors have suggested Intravenous Immunoglobulin, but it is an uphill battle to get this covered by the insurance company.  We are considering subcutaneous immunoglobulin.

My ability to work or really do anything has been curtailed greatly since I got sick.  It would be very difficult for me to get disability despite this.  I have been essentially housebound for awhile and only go out for doctor's appointments/infusions.  I have been declining for the past year greatly.  Expenses have added up a lot, especially since I don't have a way to work or make money.  I appreciate any amount of money anybody can donate, even small amounts.

(Around the beginning of december 2018)

I have gone from housebound with some activity to totally bedridden very recently, in the past week, and had more severe autonomic and neurological symptoms., like very severe vertigo,  pain, headache, and neck weakness , along with worsening of autonomic issues, especially posturally   When I stand up at all my heart rate now shoots up to 150. Based on some evidence and some anecdotes, especially this story from a recovered patient who had cerebrospinal issues that caused his CFS (https://www.mechanicalbasis.org/),  I am pursuing imaging (upright MRIs with extension and flexion) that may or may not be covered by insurance, plus trying to do anything to alleviate symptoms in the meantime, including purchasing some home traction devices.  I have gotten worse so extremely recently that I am very unsure of my prognosis and desperate for help.  Please consider donating, anything helps.  Thanks

I have not been able to get out to hospital for infusions  that often help me.   We want to find ways to make our house wheelchair accessible, OR get a port or picc line inserted so I can get home care to give me infusions   these recent obstacles present additional costs that havent been calculated yet—possibly the cost of home care, or the cost of a stairlift

"I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."   Immunologist and CFS and AIDS clinician and researcher Nancy Klimas, on CFS, compared to HIV/AIDS


Some of the additional comorbidities I’ve been diagnosed with that have complicated treatment are Mast Cell Activation Syndrome, and Postural Orthostatic Tachycardia Syndrome.  MCAS diagnosis was based on symptoms, plus labs that showed high IgE, IgE antibodies, elevated histamine, and elevated tryptase. This syndrome means that one can have varying and extreme reactions to things in the environment or foods, without having a positive IgE allergy test result.  This can make housing and travel particularly difficult, although it can be treated with medications to an extent.


Check out the updates I posted for more info about how I've been doing more recently, how I've used the funds raised, and my treatment plan and goals in the coming months.