Don't Quit.

Ronald Stram, MD on Lyme as a Public Heatlh Crisis, How Physicians Need to Adapt, and the Trouble with Testing

Dear Friends,

This is my current specialist who is treating me for complex Lyme, Dr. Ronald Stram. He is a compassionate, smart man who is urging all doctor's to become educated as "not just literate, but actively seeking physicians" - and to make it part of their diagnostic differential. In other words, when someone comes in with bizarre symptoms, don't just ignore it, or work with standard tests. Learn about how this infection behaves, how the 100+ (in some countries 300+) possible co-infections behave and how the symptoms present outside of the tests, AND use other blood work - such as how the immune system is functioning. There are specific indicators in the immune system that can be tested to see if it is suppressed - and how.

Favorite Quotes from Dr. Stram:

"40% of Lyme patients end up with long term health problems. Catching it earlier brings those numbers way, way down."

"Lyme Disease Tests are 50% accurate. What scientist would accept a test like that?"

"“The best practice of medicine involves continual feedback from patients, research, labs, and analysis resulting in appropriate action.”

“It can leave you feeling hopeless. That’s when you have your mother or your father or your sister or your brother saying, ‘C’mon, you can take this pill.’”

... or your wonderful friends or adopted family of loving, supportive co-horts.

With Delicious Wishes,

Elisabeth

Where in the World is Elisabeth? (Update): First High Heels in a Chair

PROGRESS UPDATE ON ELISABETH, THE TENDER FOODIE

Hello, Sue Chaitin here with a little progress on Beth. Many people ask if she is getting better. The answer is both yes and no. Lyme is a complicated disease to treat, and she has “won the jackpot,” as the doctor told her, on the type and number of co-infections, as well. She has several co-infections that she got when the tick bit her, and some of them are very, very tough. She continues to improve, yet still has many frustrating and sometimes frightening ups and downs. She does her best to take them in stride. Right now, she is grateful to be able to drive to get groceries and to be able to take care of her daily needs. She couldn’t do this when we left for Albany in May. I told her that I don’t know how she does it, and she responded, “I don’t know either!” She wants to be able to get back to work full time, and is using her time as wisely as possible until then to start writing again.

Her physician said that recovery usually takes a seesaw type of pattern. He asks her the same 2 questions upon every visit: what is better than last time? What is worse than last time? Then asks the same to questions to compare her progress from when she first arrived. He is looking to see that there is a slow, steady upward trend, and that the ups and downs follow that trend. He is also looking very specifically at the symptoms that line up with each co-infection. Her muscle weakness, for instance is better, yet she still have acute episodes where she suddenly feels like she can’t walk. This can come on suddenly now, but leave within a day or two. As long as these symptoms “move through” and dissipate, this can be a good sign that they are being drawn out and handled by the current treatment plan. Her brain function and speech stay consistently better and better, and her vision is getting back to normal. Again, ups and downs, but a steady upward trend here. Her digestive issues are still a problem. What had not been improving was her heart symptoms and some neurological issues where limbs spasm and sometimes go numb. She had been waking up every 2 hours throughout the night soaked in sweat and jolted out of bed by a pounding heart. Her doctor then worked with two naturopaths to address this, as the drugs were not handling the night terrors and associated heart issues properly, and her body was stuck in a fight or flight pattern that had a mind of its own. Thankfully, with what she is calling, “her magic drops” from this new course of treatment, the night terrors and heart palpitations are starting to dissipate and she finally has been getting a few straight hours of sleep. Sleep will also help her progress.

The other issue that has gotten worse, are her allergies to chemicals in perfumes, lotions, and detergents. This is particularly frustrating as many new patients, or relatives of patients who come to visit the IV room, forget that perfumes are not allowed in that room. She has to quickly exit the room as her lungs start to burn, fill up, and she gets dizzy and nauseated. This is not uncommon for Lyme patients whose immune systems have been hammered. Another patient used to pass out when exposed to perfume. This patient was able to, when the Lyme infections were more under control, heal from that. We hope this happens for Beth, as well. The nurses are wonderful, and quickly relocate her to another space, and the entire staff at Stram is working to help minimize this risk for her and other patients.

She has had these infections for a really long time, however, so the long term prognosis is still in question. Also, testing is not very sensitive and prohibitively expensive, so the physicians have to rely on symptoms. Physicians can’t, like with other infections, treat and then test to see if everything is “gone.” She was recently off of the IV antibiotics for a week to see how she would do. Some symptoms stayed steady, while others, like the heart and neurological issues got worse. And because it kept her from sleeping, she was miserable. As a result, she is back on IV and will taper off over the next few weeks, and then re-evaluate again. This may have to happen several times until the symptoms resolve, and hopefully go away or into a remissive state. A long treatment was something that we had expected, and why it is so important for her to be able to stay with a physician who is on the forefront of treatment.


Here is something she posted on Facebook that gives you a quick insight into what she goes through:

Saturday, I stood in the middle of Target, with my legs giving out from under me, acutely, my muscles just weakened, and I wasn't sure if I would make it back to the car. I did. But that just made me more determined to wear these today (see photo at top.) The doc said that improvement takes a seesaw like pattern. And to not be discouraged by a downward drop, but look for a slow, general upward trajectory. Pink high heels qualify, I think. Flip flops in the bag just in case. But these are more fun to look at while getting drugged up.

We really appreciate your continued spiritual, emotional, and financial support, it means so much. It is very stressful for Beth to be so ill, and know that her life depends upon money. She is with some of the best experts in the field of Lyme Disease. Your continued financial support will help her finish this course of treatment and stay safe. We will continue to keep you posted! Beth has been keeping a diary when she can, as it is very therapeutic (especially for a writer!), and will start to back fill some of the posts so that the dates will be in some kind of order. So look for more of the "Love Bite Diaries" soon.

Sincerely,

Sue Chaitin

Love Bite Diaries #6: Three More Steps to Being in the Pink

 June 24, 2016

What Makes You Strut?

There are 3 steps leading toward the IV room at the doctor's office, and I just sorta trotted up them. I shocked myself and exclaimed to one of my nurses, Wendy, with a few tears, "I just kinda ran up the steps!" We celebrated for a moment. Me in my flip flops, and she with a syringe in her hand. Quietly, but truly celebrated with that little spark of spontaneous joy. I love Wendy.

It is remarkable what an infection can do. Just a few weeks ago, I was having a great deal of trouble going up and especially down even one step, because my muscles were becoming shockingly and suddenly weak. I'd see a step, panic, and then strategize how I would make my way down. A flight of stairs took an odd amount of courage. I lived in a second floor apartment and it was literally 24 hours between my ability to walk down the steps without blinking, and then pausing in fear as if I were at the top of Everest. If someone were watching, I tried to walk down like a super model, but could see how dreadfully I failed by the looks on my friend's faces. I think I take so many pictures of shoes and my feet, because in May, I was beginning to wonder if I would be in a wheelchair by June. Lyme likes to attack ligaments and joints, and for me it is the ligaments in the hips and shoulder - this time on my left side, and more recently my left knee and elbow, as well. Then all of my muscles got weak. When this first started, it focused more on my right side, but at my sickest I would wake up with all of my limbs temporarily paralized for hours. The fatigue then, was stunning. Neverending. But at that time I was told that I would be lucky if I lived.

But I did live. In February, I as I started feeling like myself again, I had moments that I could skip around like a teenager. I love to move. Then the door froze shut behind me, I was without a coat, and my skippy little feet found a patch of ice outside and hit only one thing - my head. Concussion.

I was starting to work out again on my Total Gym after adjusting my IV treatment at my regular physician's office in Michigan. As the infection was killed off, I could build my muscle back up again, but I could tell there was something blocking my progress. In 2013 and 2014, I was having trouble getting out of the car without falling. My left leg just couldn't hold any weight on its own. I couldn't open doors with my left arm, or hold anything reliably in my left hand. It was simply too weak.

A couple of years before that, I was doing handstands in yoga class. After working my way out of a terrible relapse that happened shortly after I moved to Michigan, I got my stiff back into backbends again, and felt my power return. I would go from very athletic to feeling like aliens took over my body. Once, my muscles were spasming so severely that my Dad brought me to my medical masage therapist, and the therapist had to bring me home and carry me inside. This is scary stuff. Each relapse was brought on by extreme stress and the lack of my own knowlege as well as medical knowlege about Lyme Disease and its co-infections did nothing to stop it. I had never, until recently, heard the word, "co-infection."

Co-infections are one of 16 ways, according to Dr. Horowitz, that keep people with Lyme sick - chronic, they call it. I hate that word, "chronic." But so it has been.

Now, I wait to see which co-infections I actually have.

Each time I relapse, I put out a pair of beautiful high heeled shoes to keep me going toward a goal. I put them where I can pass by them every day. I keep them out to remind me that there is beauty in the world, and people to see, and streets to strut. I like homework, you see. I like something to concentrate on besides feeling like crap. "Hope" is too namby pamby. It feels like a cruel, unattainable joke with a bad, bad punchline. Homework, now that I get. A target, a goal. A bullseye.

Pink high heels.

Love Bite Diary #5: Walking and Talking Progress

The Love Bite Diary started as notes to friends. These are friends from all over the world, brought to my laptop through that sorcery called Facebook. Until I catch up, the entries of the diary will not match the dates of the posts. I hope to add the stories of some of the incredible people I am meeting. In the meantime, I hope you are glad to be on this exploration with me, and that it is helpful to each of you in some way.

~ Thank you, Elisabeth

DATE: JUNE 19, 2016

Still Facing the Stairs

Things are continuing to progress here - I am walking better, although the stairs still terrify me. My speech is almost back to normal, although my neurological issues continue - my brain is on a 2 or 3 second delay behind my intention, and driving is tough, as mild spacial issues come and go like how wide the exit ramps are, etc. So it is great that I am just down the street from the doctor's office and treatment center now.

But this also makes it continue to be difficult to communicate. Especially about detailed allergen research on any medication, especially oral meds. Oral medications use fillers that include wheat, dairy, corn and tapioca. Tapioca has been a very common gluten-free filler or starch. It flies through the air with the greatest of ease and lands anywhere in the factory - and on products that don't contain it in their ingredients. It took a dangerously building reaction to make me realize why I was throwing up, swelling up, and feeling little steel fingers grab my throat after eating foods that never bothered me before. Vitamin C is sometimes derived from tapioca, too. More on that later.

We Affect Each Other

When I first told my friend Sue what my secret life was like (when it was secret), she said,"Thank you for sharing this with me. This sucks! This must end. You are going to get fixed no matter what it costs." She wondered why I was hiding. She called me up and asked. She was hearing me slur my words as I tried to cover it up. She saw me grab onto handrails like they were life rafts as I gingerly went down stairs and had noticed that I was falling a lot. She could hear that I had given up.

Sometimes we just need someone to care enough to notice.

This relapse had actually started with my left arm a few years ago. It became useless. I was doing handstands and walking on my hands, and then found that I couldn't support my weight on my arm anymore. I went to different doctors. Some looked at my rotator cuff and prescribed physical therapy (which did nothing or made it worse), others just said, "huh."

Even the doctors who knew I had been diagnosed with Lyme.

I got back into treatment, and got back on my feet. Thought I was OK. But, there was an enormous amount of building and long-term stress in my life over those years, and my body just couldn't take it anymore. As soon as I stopped the treatment, my entire left side slowly became so weak I couldn't put weight on my left leg. Then my knees "disappeared."

As many experienced Lymies have said, "Lyme Disease loves stress."

If you are out there an experience similar bizarre things that come and go and make you feel suddenly older or hermit-like, I hope you have someone who reaches into your business and pulls you back out. If not, gather your britches and fight for yourself. You are not crazy. You are stronger than you think you are. We are ultimately in charge of ourselves, but, opening up to a trusted friend also opened the door to a new and necessary kind of support that I've never had before.

We need each other. We affect each other. So much. I learned that it is OK to be the weak one and need help. I hate that. I really, really hate that. I want to be the mother hen that gathers people in and helps them heal. But it is OK. To need help. It is OK, because it is the truth. Don't let anyone tell you that it isn't. Even if those people are those you love. Or "experts."

Thus goes this leap of faith. And an unknown road ahead.