I have been meaning to blog again for months.
I wanted my next blog entry to be my announcement that I have created an amazing resource for people who are facing, managing, and/or coping with major health issues and their symptoms.
I have worked on this project for months.
While I do have the product ready (and over a dozen people have it for my test pilot), I have been overwhelmed with setting up my store online.
I will get to it.
Yes, I promise.
It is called the Health Battle Warrior Battle Plan – Bootcamp.
In the meantime, God has me blogging today to share an update.
I am officially back to work as of March 2016; I am working for a federally-funded research branch of ob/gyn physicians, who are working to solve the issue of infant mortality in Detroit, Michigan.
These doctors are flabbergasted that I am not able to receive adequate treatment for chronic Lyme (One of the doctors is from Connecticut, and he is astounded that Michigan lives in the Dark Ages regarding this horrific illness).
While returning to work was financially necessary, I am by no means raring to go…
I manage to make it through each work day only to come home and crash; I have been able to do it again and again each next day for several weeks now (I did miss one day for hospitalization, but I will share more about that).
The Zithromax/Bactrim double-whammy antibiotic combo I was on for the past several months had finally begun to take its toll on my liver and kidneys.
I did a cleanse to fix that (I thought I was dying—for REAL this time).
My liver and kidneys are doing better now.
Anyway, my new and not-so-friendly round of medicine (Dapsone) requires a weekly blood test to track my methemoglobin levels to ensure I do not develop aplastic anemia (a side effect of the medication).
The most recent protocol for Lyme here in Michigan (in the Dark Ages, as you are unable to have access to meds that are proven effective for neurological Lyme issues) is to continue to rotate two antibiotics every several months (as long as tolerated) for a year without symptoms because the bacteria becomes resistant to the antibiotics.
“Without symptoms” are the key words here.
You see, I have been on antibiotics for chronic Lyme since March 2016, but I have yet to be symptom-free.
I still have ridiculous migraine headaches that nothing can touch (except more steroids), and I still fall quite a bit.
A few weeks ago, I was becoming confused again, and I was falling a lot.
My skin had become severely mottled; I was having small bouts of dizziness, and I was having chest pressure.
Within three days, I had fallen twice in the bathroom and burned my arm both times on my curling iron each time I fell.
My husband, Shawn, who saw me fall and burn myself the second time, said, “I did not believe that could even be possible (regarding the first time I fell and burned myself), but that is EXACTLY what you did!”
As these were all signs of the dreaded anemia, I called my Lyme doctor to find out my most recent methemoglobin blood results.
They emailed me the wrong ones (which showed my blood level was fine), so I figured the results were not yet back.
They had been mislabeled.
That Saturday, instead of going to have my standing order blood draw at the only lab that knows how to do so correctly, I went to see my primary care doctor to share my symptoms.
My regular doctor was not there, but this new doctor was very helpful and listened to me; she called me on Monday to let me know that my last methemoglobin was very high.
I knew it!
That day at work, I slipped twice and almost fell; thankfully, I caught myself both times.
After work that night, I drove to the lab to have the weekly blood draw done that I had missed on Saturday, but they were already closed.
I phoned Shawn, and he picked me up from the lab and drove me to the hospital.
After a “normal” EKG (They ALWAYS are!), I had my blood drawn, and I told my story, once again, about my chronic Lyme.
This time, however, it was like I was in The Twilight Zone…
It was just after midnight by the time my bloodwork was processed that I was able to speak with the doctor…
The ER attending physician informed me that she was from the East Coast, and asked,
“Why are you on Dapsone, given its health risks?”
I told her, “Dapsone is my last antibiotic option of the protocol, as my insurance has refused to pay for one of the medications ($2,000/month); another med was contra-indicated for me with my steroids, and I almost had another adrenal crisis; I am allergic to another of the medications; and, most recently, I had to change to Dapsone due to my liver and kidney bloodwork from my last set of medications.”
She asked, “Have you ever had the full month of IV Rocephin as part of the protocol?”
“No,” I said.
She said, “Well, we can have a picc line put into your arm in the morning and start IV Rocephin for you for a month.”
Had Shawn not been there, I would have thought this conversation had been a dream.
I looked at him and said (as soon as she stepped out for me to confer with Shawn), “Are they ACTUALLY recognizing and treating Lyme now?”
When the doctor returned, I told her, “Yes, I will stay and have the picc line put in, but may I have an IV dose of Rocephin now to ensure I do not have any side effects?”
“Certainly,” she said.
Within minutes, the med was placed.
I developed no side effects, and my headache miraculously disappeared, almost immediately.
I was ecstatic.
Shawn left to go home for some sleep, and he planned to return after my picc line procedure.
But then came SHIFT CHANGE.
The day-shift attending physician came in to introduce himself.
He asked about my Lyme diagnosis, and, using my Health Battle Warrior resource, I showed him my positive Lyme results.
He made no mention of the picc line and just said, “We need to do another EKG.”
I looked at him, quizzically, and asked (failing to mask my irritation), “Why?”
“Because of your chest pain. We like to do two EKGs to compare to the bloodwork we drew earlier.”
I said, “The first EKG came back fine, and I decline repeating the test. What is the status of my picc line?”
He retorted (both laughingly and patronizingly, I might add), “You don’t need a picc line!
I told him, “The ONLY reason I have stayed here was to have the picc line procedure.”
“We will have a physician from infectious disease come in to speak with you this morning.”
“Nooooooooooooo!” Yes, I did say this in my head. Sheer exhaustion, and I was still able to refrain.
Kudos to me! I’ve come a long way, Baby!
Yep, it WAS, in fact, The Twilight Zone just after midnight at the hospital—the show ended right at 7:00 a.m. with shift change!
I had been THIS close to finally having access to a medication that has been proven to cure neurological Lyme; instead, I was coming home empty-handed (That ONE dose of Rocephin, by the way, kept my headache from returning for 36 hours!).
These infectious disease doctors are the same doctors who had told me that my 10 year-old son did not have Lyme (after his pediatrician extricated the tick from his ear, I might add)—His bloodwork came back positive for Lyme a few weeks later, and he was on medication for seven months.
Yes, I did yell at these doctors.
These infectious disease doctors are the same doctors who told Shawn, when he was in the ER dealing with a systemic yeast infection from his Lyme antibiotics, that he had lupus—AFTER I showed them his positive Lyme bloodwork!
Yes, I did yell at these doctors again.
Given my adrenal insufficiency, I don’t yell very much anymore—I work to conserve my energy for self-care nowadays.
I did not want to yell at these doctors again; I just wanted to go home.
I called Shawn immediately after the physician left, and asked, “Did we really talk to a doctor about a picc line?”
“Yes,” he said.
“Well, all of that is out the window now! Can you come and pick me up?”
I called in my nurse and asked to leave, declining the visit from infectious disease.
The doctor came in shortly thereafter and said, “That is fine for you to go. They phoned and said, ‘We don’t recognize chronic Lyme.’”
SMH. SMH. SMH.
I am so glad I was able to conserve my energy.
I saw my Lyme doctor a few days later and told him about the ER visit and the IV Rocephin.
He said, “In the state of Michigan, I will lose my medical license if I prescribe IV Rocephin to you. The state needs to pass a ‘physician-aligned health care bill.’ They just did so in Utah. They have also passed similar bills in Massachusetts, New York, California…”
I contacted LymeDisease.org for more information about other states’ bills to protect Lyme-literate physicians that enable them to prescribe medication.
I don’t know why I keep circling back to politics, but if it will help others, I am willing.
I do think this is a sick joke, God, but I will put on my big girl pants and play the game.
Am I able, physically?
I can do all things through Christ, who strengthens me. Philippians 4:13
Keep repeating it, like a mantra.
Please give me strength, God.
I am REALLY tired.
No one should have to go through this much insanity to receive treatment for Lyme.