For my next trick, a PICC…and a fight

Where’s my Lymie Achievement Badge? I am officially in an insurance battle.

Since my last update, my doctor has decided it is time for me to get a PICC line and receive intravenous antibiotic treatment. I have been debilitated by Lyme Disease for 21 months. My progress has stalled (again). I am still experiencing neurological symptoms. I have been on MANY different oral antibiotics, tried injected antibiotics, and pulsed oral antibiotics. It’s time to step up our game.

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PICC line: a visual aide!

I am to get the PICC line as soon as possible, and have it for 8 weeks, during which I will administer my own IV antibiotics (after being taught by a visiting nurse) four days per week. PICC lines must be kept dry, so I will need a special cover for the shower, and swimming probably isn’t worth the risk/hassle.

My insurance company at first seemed like they would cover 4 weeks of treatment, but has since decreed that the treatment is not medically necessary, and are denying to cover it at all. Not a single cent. Without insurance coverage, this treatment will cost a minimum of $3,000. Our out of pocket Lyme spending total at this point, pre-PICC is $10,000. So you bet your bippy I’m going to fight.

For people with persistent or chronic Lyme Disease like me – especially with neurological issues – IV antibiotic treatment can help you really get over the hump and start to fell well again. I am very fortunate to have found my way to the Dean Center and received a referral for a PET scan of my brain. My scan results are in, and show that I have hypometabolism in my temporal lobes.

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PET scan day! I got injected with radioactive material, wrapped up like a mummy, and lived to treat myself with a yummy snack!

Hypometabolism cannot be detected by an MRI. It tends to show up in Lyme patients with neurological issues who are lucky enough to get a PET scan (which are not as readily accessible as MRIs). Hypometabolism in the temporal lobes accounts for short-term memory loss, which has been a major struggle for me throughout my illness. The bad news is, hypometabolism has been found to be a precursor for Alzheimer’s. The good news is, the Dean Center has had some success eradicating the hypometabolism in Lyme patients with IV antibiotics.

As I type this, my PET scan results are being sent to my insurance company as proof that a PICC line and IV antibiotics are medically necessary. I’m not sure I can fully exhale until I hear back. If protecting my brain, and preventing Alzheimer’s doesn’t count as medical necessity, then what in the fresh hell does?

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More help on the path to healing

One of the many frustrating aspects of living with Lyme Disease is how widely misunderstood the illness is. Many people are surprised to hear that Lyme Disease can linger long after a short course of antibiotic treatment. Even much of the medical community does not understand how devastating persistent Lyme Disease infections can be, and treatment for and recovery from long-term Lyme Disease is still hotly debated.

As a patient, it can feel very isolating to have a misunderstood illness, and limited resources to turn to for answers. I am fortunate that I have access to a Lyme literate physician who has a lot of experience in treating persistent/late-stage/chronic Lyme Disease, who is a short drive from my home, and provides care that is mostly covered by insurance.

Even with good care, at some point in my Lyme treatment, which has been ongoing for over a year now, I started to wonder: Even if I can eradicate this Lyme Disease infection, how will I get back to “normal?”

Being debilitated for nearly two years now, so much has changed, shifted, and transformed in my life. As far as my physical body, I have gained weight from inactivity, lost strength, and my stamina is much lower than it was pre-illness. Even if I can recover from Lyme, what kind of journey do I have ahead to get my body back to the health and strength and I once enjoyed? Regarding the neurological piece of my illness, will all of my cognitive difficulties, brain fog, and memory problems simply vanish when I am “better?” Will I get back my healthy mind? On the emotional front, I have experienced feelings throughout this illness that I previously didn’t even know existed! I have battled depression and anxiety. I’ve come to understand the special brand of stress that comes with a chronic illness – grieving for your old life, worrying for your future, panicking about money as medical bills accumulate, missing out on various opportunities and experiences, always feeling like you are letting people down by not being able to do things, being continually frustrated by your own body’s limitations; the list goes on!

So when I read an article about a new Lyme resource in the Boston area , The Dean Center for Tick Borne Illness, offering rehabilitation for Lyme patients, I was curious. I called them up, told them my story, and waited three months for an appointment.

With my past experience of being told by an Infectious Disease doctor to simply wait around to get better, and by a neurologist that I “don’t have Lyme anymore,” I was understandably skeptical. I also wondered if I was sick enough to warrant rehabilitation services. After all, the Dean Center is part of the Spaulding Rehab Outpatient Clinic, which treats amputees and people with far more debilitating conditions than mine. But I went in with an open mind.

I saw a physiatrist who listened carefully to my whole Lyme history, took diligent notes, and asked surprisingly attuned questions. He did a neurological exam, and gave me a neurological quiz of sorts. Then he started to tell me all the ways that he could help me.

He immediately suggested a PET scan of my brain, as many patients have had better luck with the PET than an MRI in getting physical evidence of Lyme effecting the brain. He scheduled the scan for me, right then and there, to take place the following week. I didn’t even have to do anything! He said that in patients like me, with a lot of neurological symptoms from Lyme Disease, the PET scan will often show areas of the brain that have been effected by the Lyme. “You can see it in the images,” he said. “It’s very real.” The results from the PET scan can help doctors to know just how much damage the Lyme Disease has done, and can also serve as justification for continued or more advanced treatment.

The doctor also gave me a prescription for speech therapy, which a neurologist had previously recommended to me, but I was unable to find a provider for. Now I can get this therapy right through Spaulding Rehab. Speech therapists can provide a kind of cognitive therapy that will actually help me rebuild my brain health, something which cannot simply heal overnight.

For the physical aspect of Lyme, I was surprised that I do qualify for physical therapy, also available through Spaulding, to help me rebuild my physical strength and stamina. Sick girl personal training!

And finally, the doctor acknowledged that dealing with this illness has been a trauma; that long term illness can cause or worsen depression and anxiety, and that with Lyme in particular, the added stress of having a disease that is so misunderstood cannot be discounted. He offered me a referral for counseling with a provider through Spaulding who, “really gets it.”

All in all, my first visit to the Dean Center was such a wonderful, affirming, hopeful experience. I will continue my antibiotic treatment with my Lyme doctor, and the services the Dean Center provides will work in conjunction with the medication. It just feels really great to have more people in my corner, addressing this disease from many angles, and helping me fight my way back to health.

At the end of my appointment, when the doctor shook my hand, I said, “Thank you so much. I really appreciate it.” To which he replied, “We’re just getting started.”