Setbacks

The month of May was lost to me in many ways. After the pneumothorax I did get out to Colorado to meet the specialist and begin treatment; a one week delay. When I got the Rocephin dose up to 2 grams a day I began to feel even worse than I had before antibiotics. On the fifth day at this dose I developed a body wide, nonitchy, red rash that would fade into purple color only to become red again. When the rash flared I generally felt lousy and I noted that my body felt like it was covered in "Icy-Hot" cream, inside and out. I had a follow up appointment with the specialist in 3 days so I decided to keep going but I couldn't get anything done beyond eating,doing minor paperwork tasks and playing computer games. More lost time.
At my visit it was decided that the worsening symptoms and rash reflected too rapid a kill-off of the spirochetes and I was told to go back to 1 gram a day for 2 weeks with a slower ramp up schedule. The Mepron was similarly cut back. I'm to hold off on the Zithromax and Flagyl for now. Yesterday was my first good day since that change and I'm grateful to be able to think again. I was also able to weed in the garden and do most of my rehab; this gives me a sense of accomplishment. I had hoped to be on full doses of the antibiotics by now but am a month behind, which is frustrating.
I remain hopeful for a future recovery and although treatment got off to a slow start I did pick up some new insights: #1) Complications can occur even under ideal circumstances and the physicians involved can be empathic without needing to apologize for the problem. #2) There are many benefits to being under the care of an experienced treating physician. Initially I wondered why my clinic couldn't mimic the treatment offered in Colorado. Ordering the meds isn't the issue; it's knowing when and how to alter the plan that distinguishes between cookbook approaches and the approach of an experience practitioner. Maybe when I'm better I can gain such experience but for now I would be more likely to harm than help someone with a borrelia related disease. #3)Keep you eye on the prize. At one point my symptoms were so intense that I doubted if I could deal with them on a day to day basis let alone a long term one. I had read that some patients abandon therapy because it made them feel worse even though doing so meant their symptoms would progress. I made the active decision to go forward with the antibiotics despite the side effects because to choose otherwise would lead to a certain decline in my capabilities with no hope of recovery. Having the support of my family and friends makes the tunnel less dark and I am confident that in time I'll see the light at the end of it (and not a bright light that I walk towards). #4) Laugh whenever you can,for in those moments pain and other uncomfortable stimuli cease to exist.
Goodbye May, hello June.

Starting Treatment

I met with the Lyme specialist on May 11 and began antibiotics that day. This represented a one week delay due to complications around my central line. The line was put in on May 3 and, unfortunately, the placement led to a collapsed lung. This is a known complication and while it was painful it didn't frighten me. I had a chest tube placed in the ER that night and was allowed to go home. I think I would have broken down and cried if I had been hospitalized. The tube came out on the 6th so I was able to fly to my rescheduled appointment in Colorado Springs the following week. The trip out exacerbated my symptoms of fatigue, weakness, pain and paresthesias. I would have had trouble getting there without Ralph, who did all of the planning, carrying and driving.
The Lyme specialist is a kind, experienced physician who understands Lyme from a professional and personal viewpoint. It's reassuring to discuss the unusual symptoms of this illness with someone who has lived through Lyme associated problems. After being burned so many times by my medical colleagues I know I would not have acknowledged all of my symptoms at the first visit with a doc who hadn't accumulated years of work in this area or who hadn't felt these things first hand. He is already in his mid60s and is willing to risk his career by offering aggressive treatment to patients with late Lyme, which he refers to as "borrelia associated diseases". In some states physicians have been brought before medical boards for taking this approach, which is not considered standard treatment. He was proactive in this regard by speaking to his state board about the rational behind his treatment program. The standard approach offers only 30 days of Rocephin for neuroborreliosis regardless of length of illness or severity of the disease. My reading suggests that this yields a improvement in symptoms rate around 63%, hardly a smashing success. In most bacterial infections we treat with the intention of a 100% cure rate. I have not seen an Infectious Disease article that justifies setting the bar so low. The ID guidelines talk about balancing risk of treatment against the illness related problems. In my case this is a no brainer- perhaps some changes in gut flora and possible gallbladder dysfunction is weighed against my current inability to work, think clearly all day long, be physically active. Not even a close trade off.
My new meds include Roceephin alternating with Flagyl for getting at both forms of the borrelia. I have Mepron and Zithromax for babesia (the latter needed prior approval). I take Actigall to prevent gallstones, Diflucan to prevent yeast overgrowth and acidophilus to maintain gut flora. I now have an underactive thyroid gland so Synthroid has been ordered. Before becoming ill I took preventive supplements like a multivit and calcium. Now I take 14 additional medications/supplements in an attempt to regain my health. No one can predict my outcome but I'm hopeful that I'll make substantial gains and to that end I'm willing to risk treatment related setbacks, swallow some pills and administer IV antibiotics. Anyone who knows me would be shocked if I made any other choice in this situation. I hope my insurance carrier sees things from my vantage point as that's one fight I'd like to avoid. My energy is limited and I don't want to use it in that arena when I need it for my "borrelia battles".

Feedback

I have been busy writing or speaking to the many physicians and therapists who were involved in my case over the past 2 1/2 years to let them know of my diagnosis. I wanted to inform the therapists and nonneurologists so they can consider this diagnosis if they encounter another patient with similar symptoms. The hand surgeon and podiatrist are glad to hear that I've been diagnosed and that recovery is possible. Both expressed frustration with our medical colleagues who did not consider their input when I presented it at my neurology appointments. The lack of two way communication between specialists hampered my efforts for a speedy diagnosis and I suspect this scenario plays out in the care of other patients, too. The medical profession needs to find a way to correct this problem. Patients cannot be effective intermediaries in relaying opinions, which seems to be the default process at present. Technology exists for teleconferencing but is not readily employed, perhaps it should be. Some physicians will want to be reimbursed for the time involved and they deserve to be, but that should not keep them from meeting the needs of the patient in their care.
I was happy to inform Dr. Grubb of the diagnosis because he had urged me to continue my efforts to find the underlying problem. He reassured me in Dec. 2004 that my symptoms were real and worthy of renewed consideration. I was feeling dejected before seeing him so he provided a true morale boost. POTS and Lymes share many autonomic symptoms so I hope he will recall my case if he finds another patient presenting with POTS at a relatively advanced age for the syndrome. I referred him to the ILADS website for more information. I was also glad to share the diagnosis with one of the many neurologists I had consulted. That physician had treated me with respect and had been diligent in his work-up. When he couldn't solve the riddle he tried to get me in with a specific Mayo Clinic neurologist, unaware that Mayo doesn't operate that way. He was pleased that I had an answer and could be treated. I have not hesitated to send other patients his way because I know he will offer them good care.
I also wrote the PM&R specialist. After my last visit with him I could sense a change in his attitude towards me. In November he dismissed my observations but in March it appeared that his eyes were open and he saw the deficits I complained about. Physicians have a hard time changing their diagnostic impression so I thanked him for being able to do so. I asked him if he would be able to direct my rehab efforts once the antibiotics kick in. I'm waiting to hear back.
The other letters were not as upbeat. I wrote the neurologists who had given me mental health diagnostic labels to inform them of their errors. These were errors born of arrogance, when they couldn't find the diagnosis they took a "blame the victim" stance and declared the symptoms invalid. None of them could fit the POTS, which they knew was real, into their scheme of things but when I pressed this point they ignored it. With an answer in hand they could no longer refute the obvious- they missed the diagnosis because they had stopped listening to me and did not trust my observations. I suspect that neuroborreliosis doesn't get much attention in their journals but given our location it's their duty to consider this diagnosis in patients whose symptoms are suggestive of widespread neurological dysfunction. I reminded them that I, my family and my patients have paid a heavy price for their error. I asked them to think about what might have caused the relationship to get so off track. I hope they do. I plan to contact them in a few weeks if I haven't heard back. I want to understand the breakdown from their viewpoint so that I can help other patients avoid a similar experience.
There was no glee in sending these letters. Physicians get enough negative feedback from payers and employers so I wasn't thrilled to add more. Yet, these physicians need to hear that they were wrong so they can avoid future mistakes. If they can acknowledge the problem they can work on preventing errors of a like nature. Growth can be painful.
I am in love with my profession and guard its reputation with great care. My illness has carried an added psychologic burden because of this love. I simply could not believe I was being treated so poorly, experiencing behavior I considered unprofessional but, as a patient, unable to stop. I had built my local reputation on my listening skills and ability to relate to patients; to be on the other side of the patient-physician relationship and have it go so badly was nightmarish. It has taught me patience, the need for perseverance, the hell of being mislabeled, the power of forgiveness. I guess I'm growing,too.