Another One Bites the Dust: Experience with an IDSA Doctor

"Are you saying my son does not have Lyme?" I questioned the doctor we had come to see about getting IV antibiotics for the Lyme and co-infections.

"Yes." The smug doctor stood up and said, "Have a nice day!"

I felt myself battling between frustration, aggravation, anger and tears. My 15 year old son stood up and looked at me, as if asking, "Are you going to say anything?"

I focused on my anger. "Well, this was a complete waste of time," I said. "You do realize that there are over 700 peer-reviewed studies on the existence of persistent Lyme? We came to you for help."

The doctor shrugged and walked out.

So went my first truly despicable experience with an IDSA doctor who is not only misinformed but unwilling to help in any way. As my son said after, "Guess we should only go to doctors recommended by other patients."

This even beat the pediatric neurologist who questioned the PANDAS and Lyme diagnosis a few years ago but wrote a script for an MRI and EEG anyway after my son's cheek froze for a couple of hours.

My own doctor had recommended this doctor's partner for my son. He thought that the recent round of IV antibiotics had been good for my son, but had stated that both he, an internist, and my son's doctor could only get a month's worth through insurance and that an ID doctor who was Lyme Literate could get through at least 3 months. But the doctor he referred us to is no longer taking new patients and it was thought that his partner was also Lyme literate. 

We drove an hour and a half to get there. This would have been worth it had the appointment been successful. We Lyme parents will do anything for our kids. As it was, we saw a brand new resident doctor first. I think it was his first day there. He clearly knew very little about Lyme as I had to explain a Herxheimer's reaction. But he seemed friendly. When he left the room, my son asked, "Mom, did you like him?" 

"That could be you someday," I told my boy, who wants to be a doctor. He shook his head and said, "No, that's too boring. Surgery is much more exciting." 

The doctor finally came in and made small talk. Fine, if the doctor would help, we could chat for a moment, although I really didn't want to hear that he has a healthy kid around the same age as my son. But, whatever. Establish common ground. 

After that, it didn't take long for him to reject the diagnosis of Lyme. When he took a look at the Igenex test and explained to the resident that "this is a test from California", my inner IDSA-meter went off. He then proceeded to explain to me about IgMs and IgGs. My internal eye roller went off. My son has been ill for years. I'm so beyond IgMs and IgGs at this point.

But when I told him I knew that IgMs and IgGs don't always convert with Lyme, he became agitated. "Who told you that?" he asked. "That's not true. Who told you that? All diseases do." 

As if I would throw any of our previous doctors under the bus. 

He never asked about co-infections. Or symptoms. Or the fact that a month plus of Rocephin greatly helped my son's joint pain. He just stated that once treated, Lyme is gone. He stood up and ended the appointment altogether. 

If he truly believed that once treated, Lyme is eradicated, then what is causing my son's symptoms now? Doesn't an ID doctor treat "Post-treatment Lyme"? He gave no suggestions for treatment.

The Igenex test we gave him is four years old. Is he really going to base my son's case on this one test? LLMDs will use clinical evidence. One of the practitioners with whom I recently spoke wondered if my son had been re-infected recently, which could have led to his "relapse." The doctor today dismissed everything without even finding out all the facts. And I thought that maybe they'd want to test him through Galaxy Labs. What galaxy am I living in?

Not once did this doctor ask anything about co-infections. Rocephin helped. But it treats Borrelia, not Bartonella and Babesia. We are having major difficulty treating the co-infections because my son doesn't detox well. 

Clearly, this doctor had no desire to investigate further or to even treat my son. He couldn't get us out of his office fast enough. I guess we're pretty lucky in that we do have knowledgeable Lyme-literate doctors and that this one doctor is not representative of all others where we live. Yet I wonder how many people must endure multiple visits to ignoramuses such as this. 

My tears came the moment we exited the office building. My son was pretty cool about it. "I didn't expect more," he said. And we drove home.

An Open Letter to Ally Hilfiger, Author of "Bite Me"

Dear Ally,

I just finished reading Bite Me and now I feel as if I've met you. Gosh. I wish my son could meet you. You're young and gorgeous (even he would agree) and I'm sure, sociable enough to put him at ease and he would like you if he didn't feel too anxious that particular day and could take the earphones out of his head. If he were halfway himself for the day, he would be able to relate to you, because of your sense of humor, warmth and positivity. And because you get it. You have a unique understanding of the child who suffers from Lyme, an insider's empathy for the teenager who tries to rebel despite the Lyme that creates an ultra-dependency, an adult's experience with the multi-faceted evil world of Lyme. 

You have been through incredibly much in your life and so has my teenage son, and thousands others like him. I can name a dozen friends right now who have children struggling with the same Lyme symptoms--brain fog, fatigue, depression, joint pain, memory loss. Children who have expressed suicidal thoughts. Some children who have acted on them. 

But you, Ally, have such drive and a desire for survival. I wish you could inject that into these teenagers and young adults who suffer from Lyme and need someone other than a parent to renew their hope for recovery.

Teenagers just want to have fun and they don't equate depriving themselves of pizza with being healthier. Especially when treatments don't seem to be working. They fear the anxiety that divides them from friends while they grieve the friends who have slipped away because of the effects of the disease. Daily, I read about children who are homebound, teens and young adults who have graduated from high school late or received GEDs or who cannot graduate or attend prom or anything else that the world around them continues to do. Life is a merry-go-round and our children with Lyme are the spectators, sitting in the last invisible row, watching the world spin without them.

My son doesn't care to be an advocate, doesn't want to write about Lyme or talk about it anymore. He posed for the Lyme Disease Challenge last year, but didn't this year, despite the fact his PICC line would have made a statement. Frankly, he's been too tired and nauseated for a long time. It's been over six long years of him being afflicted, although he first showed signs when he was 2; he most likely was born with Lyme. He's adolescent in some ways, much younger in other ways and vastly experienced in his suffering.

Much of your book really moves me. Two parts that stand out are the foreword and a page much later in the book. The foreword, written by your father, had me undone. I was sitting in the hair salon with dye in my hair when the tears began to spritz from my eyes. As I plunged into your father's grief, I relived our own story. I felt that silver connection that has wound me to others in this topsy-turvy community of survivors who fight for their own lives or those of their children.

My friend Katie and I both have been reading your story and we recently compared pages. She texted me, "I think you will have the same 'YES!!!' response at page 204 as I did." OMG--Yes! For that is how I feel; this disease that abides in my family, that I probably transmitted to those I love, has inspired me to reach out and connect, to help make some changes to the world. I have to find a positive meaning from all this despair and pain. I have grown, but I'm an adult and I've fought to find control, answers, a lack of helplessness. But as for my children...their growth will come later, hopefully.

You write eloquently, with honesty, without fear. Your message that "positive energy attracts positive energy" drew me to your story. This positive energy is what has gifted me with friends like Katie and other special moms.

I fret that my child does not have a lot of positive energy lately. He does have love and parents, as well as doctors, who understand his pain. We encourage fun times, but any expending of energy ends with him bedridden for a few days. My son has taught himself to play electric bass. He and his sister have formed a band (they practice one day a week). But intense fatigue and nausea have derailed school for now. He is bright and creative but melancholy, especially when he suddenly has trouble learning because of the Lyme.

If you flew into NY to meet with a group of teenagers, I doubt that my child would even want to go. He has way too much negative energy. I wonder how to bring home more spirituality when he neither feels well enough to participate in anything new, has too much Lyme anxiety to experiment, nor will venture away from his safe place simply because he's 15. 

But how I wish you could rub off on him! And how I wish everyone in his school district and everyone in our extended family would read Bite Me: How lyme disease stole my childhood, made me crazy, and almost killed me because it validates the challenging experiences we have in our own home, offers hope, and talks about healing.

Ally, you are a true warrior, with the heart of a caretaker and the strength to expose your experience and the weakness of much of our country's medical system. I thank you for making me cry and smile as I wonder what next we can possibly do to cure us all. I'm thrilled that at least one family member who has avoided reading about Lyme has agreed to read your book! Person by person, book by book, state by state, TV station by radio show, I know that you are making the difference in this lifetime that you are destined to do.

Lisa

Lyme in the Future: Opportunities for Careers

Let's face it, folks. Lyme Disease and co-infections are on the rise and yet our country is more concerned with the much fewer cases of the Zika virus. Last year, the focus was on Ebola. Most doctors neither acknowledge Lyme nor know how to treat it. Add to that the fact that scientists in our country are financially invested in keeping Lyme on the low-down. In fact, I just spoke with someone the other day who consulted with a "top" NY Lyme doctor (IDSA) who diagnosed her with the flu instead of Lyme (big mistake) and later gave a friend only 2 pills of doxycycline when a tick was found because he claimed they had to wait for a positive Lyme test before administering antibiotics. 

So, with only a handful of knowledgeable Lyme literate doctors amidst a majority of doctors who stick with the outdated CDC guidelines (that are no longer congruent with those of the National Clearinghouse), a patient with chronic Lyme disease has little success in getting treatment today. Compound that with the difficulty of getting a diagnosis in the first place. Lyme mimics so many other diseases--Fibromylagia, Rheumatoid arthritis, Crohns, Lupus, depression, etc.--and it can take visits to 20 different doctors and sometimes 20 years before the idea of Lyme is even whispered.

Multiply this by 329,000 people a year. That's a conservative estimate, since some researchers (and even the CDC) suspect there could be over one million new cases of Lyme Disease annually in the USA alone. Lyme is now in every continent except Antarctica. So, multiply that again. And again.

Thought you needed a tick bite to get Lyme and TBDs (tickborne diseases)? Think again! Here's a dirty little secret: preliminary studies suggest that Lyme can be transmitted sexually. Lyme is a STD. Oh boy. It is already established that Lyme can be transmitted congenitally and through breast milk. 

But, no worries. Not everyone reacts to Lyme the same way. Some people have strong immune systems and can withstand the bacteria for years, even decades. Then again, some can not. The bottom line: infected moms are passing along Lyme to their babies. And here's another tasty tidbit: the blood supply is not yet screened for Babesiosis or other bacterial infections. You do the math.

If this continues, what do you think is going to happen in ten, twenty, forty years?

Job opportunities! Yay! 

With an surplus of Lyme Disease-ridden bodies, we will have a great need for certain jobs. Folks--this is where it's at. If you're considering a career change or guiding someone into a job, plan accordingly.

1) Doctor, nurses, homeopaths, medical practitioners. It goes without saying that Lyme Literate medical practitioners will be in high demand. Since antibiotics by themselves can't seem to eradicate Lyme, some people are turning to homeopathy and Chinese medicine. Nurse practitioners, visiting nurses, nurses of all types, however underpaid they are, will be needed.

2) Nutritionists:  When the immune system is under attack, the body can no longer handle certain foods that might otherwise be tolerated. That leads to all sorts of jobs in the food industry, as those with Lyme cannot handle gluten, dairy products, sometimes meat products, etcetera, etcetera, etcetera. Creating nutritional foods from very little will be the wave of the future.

3) Indoor gardeners: Yes, let's bring those plants inside. Plants are good for the air and plants grown indoors don't have TICKS. Add to that a few happy lights to cure the SAD of the winter, and someone with Lyme never needs to step outside again.

4) Wheelchair ramp installers. For those who roll with the punches.

3) Dental specialists. Because Lyme attacks the gums. This is a wide-open field, folks, as few dentists know anything about tickborne diseases. 

4) Insurance coordinators. Because it gets to be too much work to submit claims AND monitor when the payment comes in from the insurance company, IF it comes in.

5) Alzheimer's specialists. Alack, studies have shown borreliosis in the brains of diseased Altzheimer's patients.

6) Therapists of all types: Stress-reduction, CBT, DBT, speech & language, occupational therapy, visual therapy, art and music therapy, OCD specialists, ADHD specialists, Autism specialists

7) Mindfulness educators/gurus

8) Special education teachers and teachers who are willing to teach the same content again. And again. And again. Because short and long term memories are strange little things when the brain is attacked by Lyme.

9) Attorneys to sue the CDC

10) Robot designers because robots are the future. Can't get up for a meal? Let the robot get it. 

11) Tax advisors...do you have any idea how to deduct medical expenses from your taxes? Count every mile you drove to see a doctor!

12) Internet app designers (particularly apps for keeping account of doctor appointments, miles traveled, gluten free purchases, supplement purchases, moods, symptoms, side effect tracker, etc.)

13) Stay at home parents: Let's face reality. A kid who is sick with Lyme often ends up homebound for a period of time. You sure as heck better have a way of watching that child.

14) This leads to suicide prevention specialists. An ouchy subject but a reality.

15) Mold-free housing builders and inexpensive mold remediators

16) Cheap and easy meal creator and deliverer (that are GF, CF, nut-free, soy-free, this-free, that-free, everything in between-free.)

17) Home tutors. The best school tutors have been currently employed teachers who must wait until after the school day to teach. Where do all the good teachers go when they retire? Not to tutoring!

18) Housewives and househusbands for hire: Because when someone has Lyme or a multi-systemic disease, dinner is no longer made, yards are no longer mowed, clothes are no longer washed. Eww.

19) Drywall repairer. Think: bartonella rage.

20) Urine stain lifter and black light inspector. Kids with Lyme. 

21) Padded wall installer

22) Personal pill organizer

23) IEP enforcer and educational advocates

24) Invitation decliner

25) Hair checker (for dogs, cats, horses and of course, people.) Find those tiny ticks!

26) Interpreter. Sometimes kids with Lyme just stop talking for a while.

27) Rent-O-Possom businesses. Because opossums eat ticks. 

28) Chicken coopers. Build a coop, clean the coop, collect the eggs and get the chickens in. Because guinea fowl also eat ticks. And eggs are good for you. Usually.

29) Insurance advocates: a professional who can fight with the insurance company on your behalf so that the latest test or treatment is covered. 

30) Reminder to look at a reminder list (for people with brain fog)

31) Manufacturer of organic, ultra-comfortable beds that make themselves

32) Epsom salt sales

33) Essential oils consultant

34) Medical Marijuana Customer Service Representative

35) Scribe (for people struggling to write); helps if this person can also act as a thesaurus and even recall the names or books and musicians and titles of books

36) Internet Party Planner for those people who wanna party like it's 1999 in their PJs atop their pillows!

So, there we have it, folks. More than 36 different jobs that will be in demand thanks to the expanding tick populations and our country's current failure to adequately treat, much less acknowledge tickborne infections. Mind you, none of these jobs will pay enough to cover the costs of treatment for a tickborne disease that becomes chronic for one person. If you have Lyme, you might be unable to work anyway, so don't worry, be happy! If you're aiming for the big bucks, you may choose to pursue construction (as an owner) or investment banking. Just make sure your buildings are mold-free with elevators and that your money is invested in...well, not IDSA.

In a Pickle over a PICC Line

My son had a PICC line inserted for the first time ever. For me, this was a big ordeal. Yet, for the first time ever, I had not called in Dr. Google and I missed a few facts about it. Important facts, like that it required surgery. Ouch.

My son has been ill for a long time now. He's been in and out of high school this year, sometimes managing to go in for an hour or two, sometimes managing to sit with his school-sent tutor for an hour, and sometimes sleeping all day long. We have treated Lyme and co-infections with oral antibiotics (after a failed attempt at homeopathy which he refused to continue.) But joint pain, chronic fatigue, difficulty with concentration/processing remained, although he once again can read his way through every interesting book in the house. (By the way, his grandma made a big mistake; she thought he wasn't much of a reader and offered him $10 per book. A few weeks later, he advised her that she owed him a boatload of money.)

We hadn't yet tried IV antibiotics. PICC or port? Once I realized that my child would have to be anesthetized for a port line, I wanted the PICC. I didn't want my son completely put out--what about the MTHFR mutations? He preferred the PICC line and the hospital doctors decided it for us anyway.

On top of that, I didn't like the idea of a doctor opening up his chest. It reminded me too much of a doll that I received when I was 2 or 3. My own grandparents gave me Baby Boo, a state-of-the-art feeding, crying and peeing doll. She was such a great baby, complete with pacifier, and I might have loved her--had my parents not installed batteries. She had a door in her back, and an empty cavity inside her and this backdoor plus hole terrified me to no end. My mother stuck her high in a closet and I was then afraid to venture near the closet.

I didn't want my baby boy to turn into Baby Boo. 

After hours and days of phoning local hospitals, speaking with nurses in the Interventional Radiology departments, checking in with my insurance company, finding a visiting nurse/pharmacy company, a PICC line and intravenous antibiotics were approved. All was pre-certified and we could begin. I think I spent so much time making this happen that I forgot to ask exactly what would occur!

It went like this: after meeting the nurses and doctor, my husband and I sat for half an hour in the waiting room while my son lay on an operating table atop a lead apron ("To protect your future," said the nurse. "Your parents will explain."). The doctor, with use of X-ray, threaded a catheter through a vein into my son's arm, until the plastic tube reached near his heart. 

His heart? Oh boy. Breathe. We've got this.

It was a good experience for my son. He enjoyed watching whatever he could see and even moreso, got a kick out of the banter between the doctor and the nurses. "They seem like good friends," he told me after. "And I really like the doctor. He likes punk bands also." 

Later that afternoon, the first shipment of medications was delivered to our home. One box held a cooler with four plastic bottles of liquid antibiotics. The other box held a slew of supplies, from alcohol pads to surgical gloves to tubes of saline. 

At 8 PM, the visiting nurse came, which led to my greatest shock. Whereas I'd believed that she would come out the four days a week my son needed the infusions, she said she was going to teach us to do it ourselves. I had a minor freak-out where I silently texted friends as I fought through my own day's fatigue and the crawling brainfog to memorize everything the nurse advised us. My son, on the other hand, who has an interest in all things medical, remained calm and accepting. So, once again, my insides did not match my outsides, as I attempted to keep my cool. 

One day later, my son and I were old pros. We laid out the supplies--alcohol swab, saline flush, alcohol swab, antibiotics (which must be taken out of the fridge at least an hour prior,) alcohol swab, saline, cap. Success! And what was I ever worried about? It's not like I could see blood.

Then, the following day, my son suddenly complained of a horrible rash on both arms. It was after 5; our doctor was away and I was sure her partner wasn't around. I administered Benedryl and ran out for cream. Was he allergic to the antibiotic? Or to something else that we had done? Or could it be a Lyme rash? Ever since my 20s, I'd begun to believe that I was allergic to an ever-growing number of antibiotics because I tended to develop weird rashes after being on them. It was only in the last couple of years that I've realized that they were probably reactions to inadvertently treating Lyme (when treating a sinus or other infection.)

Our doctor's partner called within minutes and advised us to hold off on administering the antibiotics that night (and to give more benedryl if needed.) It was reassuring just to know that she was accessible. We had further reassurance when the itch/rash dissipated with the Benedryl. It has not come back (knock on wood.)

Last night, as I watched, my son conducted the entire infusion himself. Today, he wanted to show his friends. 

So there--the end of week 1 of IV antibiotics. It wasn't so bad after all. Praying these make all the difference and help my child be able to live a normal life again. 

I just hope that any future challenges don't involve my family members. We all need a medical vacation!

Lyme Drunk

OK, so, that title is false advertising because I have no plans of getting drunk tonight or any night. Perhaps I should entitle this "The Perils of Finding a Drink I Can Drink" or "Everything I Cannot Have at the Liquor Store."

Gone are the days of heading out with friends to a bar, gone are the days of dinner dates with the husband, gone are the parties. Life throws in strange twists for families with Lyme and PANDAS. But that doesn't mean I never want another drink. I know I can't handle that much (without feeling like falling asleep) but I still enjoy the taste of a grapefruity Sauvignon Blanc or the adventure of a new cocktail.

But life is complicated and while I should (they say don't "should" on yourself) avoid alcohol and sugar altogether, I don't. However, since I am pulsing Tindamax (an antibiotic that helps to break open the cysts and biofilms of Lyme so that the doxycycline can get in and make their kill), I cannot have alcohol for at least 72 hours after the last pill without the likelihood of vomiting. 

This leaves me one night during the week to have alcohol. I kind of missed that night for the first few weeks--didn't care, didn't plan, whatever. But for the last two weeks, the idea of a drink has permeated my brain.

Last week, I carefully plotted out the days of Tindamax so that I could have a drink on Saturday night. I had it all calculated...my husband and I would slip out of the house, leaving the kids contentedly watching TV, and go to a restaurant/bar for a date. Well, Saturday day came and the kids had a big argument. Oops. There was no leaving them alone. Saturday night came around and I just wasn't in the mood anyway. 

Another time, dear.

Sunday morning came along and so did the Tindamax. 

It figures that the time I most want a drink is during the work week, when I'm in the midst of Tindamax. Isn't this crazy, though? Planning medications around a planned alcoholic drink that I probably wouldn't care about if I weren't on medication that prevented me from having an alcoholic drink? 

Tonight was supposed to be THE NIGHT. My husband encouraged me to take a run to the liquor store and get the supplies. But trouble lay ahead.

I am gluten-free, dairy-free, agave-free, oat-free, green pepper-free, coffee-free. I might as well just drink air.

I was in such a mood for a whisky sour, that sweet, tangy, bitter drink. But whisky, I learned, has gluten. I love margaritas. But margaritas have tequila which is made from the agave plant and I tested sensitive to agave. I also tested highly sensitive to coffee (hence, no Kahlua,) dairy (bye bye all cream drinks,) and peppers.

Oops. I goofed. Dang it all. After a major consultation with the owner of the liquor store, who explained that some vodkas are potato based and others are grain based (and was super helpful,) I bought a mixer for Blood Mary. I neglected to remember or tell her that I was supposed to avoid peppers, though, so I bought the SPICY one! 

I will enjoy my one drink tonight. If I can stay awake long enough!

The day after: It was no big deal. I may as well have had a V8!