Archive for the ‘Activism’ Category

Reliability of Lyme Testing

 Contagion Live

Published on Aug 8, 2017

Robert C. Bransfield, MD, DLFAPA; Peter L. Salgo, MD; Samuel Shor, MD, FACP; and Leonard Sigal, MD, explain the 2-tiered Lyme disease testing system, and debate the reliability of using certain laboratory tests to confirm a diagnosis.

 

 

Challenges in Diagnosing Lyme Disease

 Contagion Live

Published on Aug 10, 2017

Panelists Peter L. Salgo, MD; Patricia V. Smith; Robert C. Bransfield, MD, DLFAPA; Samuel Shor, MD, FACP; and Leonard Sigal, MD, provide insight regarding geographic considerations, the key criteria for evaluating multi-systemic manifestations, and making a Lyme disease diagnosis.

Emerging Lyme Tests

http://www.contagionlive.com/peer-exchange/lyme-disease-exploring-the-impact-and-controversey/emerging-tests-for-lyme-disease?sp=&sthash.ROBeS4FW.mjjo

Emerging Tests for Lyme Disease

AUG 14, 2017 | PANELISTS: PETER L. SALGO, MD; ROBERT C. BRANSFIELD, MD, DLFAPA; SAMUEL SHOR, MD, FACP; LEONARD SIGAL, MD; PATRICIA V. SMITH
**Comment**
Favorite statement:  “They want to stick with a 2-tier, antiquated test that, again, is probably missing at least 50% of our patients. So, for a lot of what we’re talking about, in reality, we’re not going to accomplish it unless the CDC moves off the dime.”
Transcript:
Peter L. Salgo, MD: My concern as a clinician is that, when you start describing everything as a potential consequence of a particular disease, now you’ve taken away diagnostic specificity, right? If everything can be caused by it, I don’t know what to make of that.

Robert C. Bransfield, MD, DLFAPA: It can be specific patterns. There are only 3 specific symptoms: the expanding erythema-migrans rash, acrodermatitis chronica atrophicans (ACA) rashes, and ACA deterioration, which you rarely see; I’ve seen it a half-dozen times. The skin gets paper thin in the wrists and the ankles. And Hyperacusis, which is that loud noises can cause nausea, sometimes vomiting, and dizziness, you only see [this] with syphilis and Lyme disease; those are the only 3 truly specific things. Here’s the problem. Diseases that are easy to find, we’ve already figured them out. What we’re left with are the things that have multiple contributors, multiple pathophysiologic pathways, and multiple manifestations. So, 2 new patients end up with exactly the same symptoms. We have to have a different disease model for complex diseases that is different than what we’re used to having, where the disease is a simple clear thing that you can diagnose with one process. We have to think of the statistical probability of symptoms and pattern recognition. It takes a more complicated way of adding all this together.

Leonard Sigal, MD: And you’re not talking about actually making a calculation of statistical likelihood. This is all that is going on in your brain.

Robert C. Bransfield, MD, DLFAPA: Right.

Leonard Sigal, MD: Right?

Samuel Shor, MD, FACP: That’s the art of medicine.

Peter L. Salgo, MD: Are there other tests that we could do? We’ve got the ELISA test. We’ve got these other 2 tests. What else is out there that can help you nail this?

Samuel Shor, MD, FACP: We’re involved in the study of 2 tests that are very promising. One is called the Nanotrap, which looks at a highly specific protein called OspA that is found across multiple strains of Borrelia. And what this technology does is super concentrate, in a urine sample, the presence of this protein and then further tests it, and, it’s 1000-fold more sensitive than the standard Western Blot. In our 2015 paper that was published in the Journal of Translational Medicine, in the preliminary erythema-migrans patients—who are very often negative in the ELISA test because they haven’t had the time to respond immunologically—24 out of 24 were positive with the Nanotrap test.

Peter L. Salgo, MD: Let me play the devil’s advocate and say that when you make a test sufficiently sensitive, it may become insufficiently diagnostic. That is, everybody turns positive.

Samuel Shor, MD, FACP: No, it’s highly specific.

Peter L. Salgo, MD: Tell me about it.

Samuel Shor, MD, FACP: It’s highly specific, and as far as the authors of this study feel, the false positivity is very low.

Peter L. Salgo, MD: But does that mean that you’ve been exposed or that you’re actively infected?

Samuel Shor, MD, FACP: It’s an antigen, so you’re actively infected. There are studies to show that an infection should be cleared and no antigen should be present within 72 hours of that infection being cleared by the body.

Peter L. Salgo, MD: So, the obvious question that comes to mind is, if somebody who’s positive by that study is given appropriate antibiotics, improves clinically, does that study then become negative?

Samuel Shor, MD, FACP: Yes, it has. And, in fact, I provided the test to 100 patients with chronic disease, 42% of whom were positive, and 1 of whom was an MS patient who was symptomatic when she was first studied and asymptomatic when she was subsequently studied. She was positive initially and negative afterwards.

Peter L. Salgo, MD: All this suggests that patients with ongoing Lyme disease-related issues—and I’m being very careful with the syntax—often wind up with a lot of different doctors, a lot of different clinical situations. The provider path here is an issue.

Leonard Sigal, MD: Can we just return to testing here for a moment? Because that is a fascinating new technology. There is a polymerase chain reaction that’s available. It’s not often used, and it shouldn’t be used. It’s a research tool, but it’s not the sort of thing that the average clinician should be ordering. There was a technology that the late Michael Brunner and I worked on back at Robert Wood Johnson University looking for immune complexes. An immune complex can only be formed if there’s an antigen and antibodies against it. So, we concentrated on immune complexes, broke them up, and then looked for an antigen, OspA, as well as an antibody against Borrelia burgdorferi. We found it to be a remarkably useful tool in diagnosing people who had active infection, some of whom were seronegative, and people who had been treated and were now asymptomatic, because they had been treated appropriately and gotten rid of the Borrelia. The problem is that it’s a tedious sort of technology: very useful, but not easily done. And so, that’s what we’re looking [at] for now: a technology that’s sensitive and specific, which is a very difficult balance to manage, and a technology that can be ramped up to make it a commercial tool.

Samuel Shor, MD, FACP: We are actively involved in the FDA approval of erythema-migrans patients, to the goal of having a CLIA-waived in-office test with that technology. We have to keep in mind we’re 24 months away from that, but that’s the goal.

Peter L. Salgo, MD: Wouldn’t that be great. We wouldn’t be having this broadcast if we had the Lyme disease test.

Leonard Sigal, MD: Yes, we would.

Peter L. Salgo, MD: We’d have a different broadcast.

Leonard Sigal, MD: There are other things we could talk about.

Patricia V. Smith: I’d like to address this issue because it’s frustrating sitting here. I’ve been involved in this setting for 33 years, and I look at what has happened. You can all talk about these tests, and I certainly was going to bring up what Dr. Sigal mentioned because we had funded Dr. Schutzer at UMDNJ, who initially looked at those immune complexes. He actually proposed that test to the CDC, and they didn’t want to hear about it.

Peter L. Salgo, MD: Why?

Patricia V. Smith: Well, that’s a good question. What I’m saying to you is that the CDC is very reluctant to move on to new technology. I’ve been invited out there, twice, to Fort Collins. We’ve brought it up as advocates. The physicians have brought it up; researchers have brought it up. They want to stick with a 2-tier, antiquated test that, again, is probably missing at least 50% of our patients. So, for a lot of what we’re talking about, in reality, we’re not going to accomplish it unless the CDC moves off the dime.

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Natural is Not Always Better for Tick Borne Illness

https://globallymealliance.org/natural-isnt-always-better-getting-real-pharmaceutical-medication  by Jennifer Crystal

OUR SOCIETY’S FOCUS ON LIVING NATURALLY HAS CREATED A STIGMA AROUND THE “DANGERS” OF PHARMACEUTICAL MEDICATIONS. BUT FOR PATIENTS WITH COMPLEX ILLNESSES, LIKE LYME, IT’S NOT THAT SIMPLE.

One of the most challenging symptoms of neurological Lyme disease is insomnia. I’ve wrestled with it on and off throughout my two-decade battle with tick-borne illness. During my very worst point, I was literally awake for weeks. In extreme distress, I cried that I didn’t want to die but couldn’t live another second if I didn’t sleep. My doctor prescribed a short course of a heavy-duty sleep medication to knock me out.

“Don’t take it,” a friend cautioned. “It’s such strong medication. Your body has the natural resources to get the sleep it needs. Try some lavender oil or breathing exercises.”

I was way past the point of being helped by natural remedies, yet I shared my friend’s concern. We’d both fallen under the common belief that natural is better. In a society where people are focused more and more on living naturally, a stigma has grown around the “dangers” of pharmaceutical medicine. The message seems to be that “natural is good, medicine is bad.”

But for patients with complex illnesses, it’s not that simple.

Sure, there are benefits to living naturally. It’s healthy to put organic food into our bodies and environmentally-friendly fuel into our cars. Yoga, meditation, and mindfulness practices are great ways to naturally center ourselves. In Lyme treatment, natural supplements often complement our medication regimes.

But natural methods are not always better. For example, some people use the mineral colloidal silver to combat infection. Just because it is a mineral doesn’t mean it’s safe, though. High levels of colloidal silver can permanently turn the skin blue, or cause liver damage. I know one patient who wound up hospitalized in renal failure. Another friend took colloidal silver for bronchitis, which turned into a severe case of pneumonia that required stronger antibiotic treatment than she would have needed if she’d taken conventional medicine.

When you’re fighting a multi-system bacterial infection, pharmaceutical medication is life-saving. Antibiotics kill spirochetes, plain and simple. Some Lyme patients are eventually able to wean off antibiotics once their infections are cleared up, and continue with homeopathic or naturopathic treatments. No one wants to be on medications any longer than their body needs them.

To avoid them when your body does need them, however, is dangerous. A new study by psychiatrist Dr. Robert Bransfield, published in the journal Neuropsychiatric Disease and Treatment, found that there were over 1,200 suicides per year1 related to tick-borne illness. Had I not taken the heavy duty sleep aid to get through the worst of my insomnia, I might have become part of that disheartening statistic.

I didn’t stay on the medication forever. In fact, I only used it for a few days. Then my doctor slowly moved me to a less potent medication, which worked in tandem with my neurofeedback therapy, a non-invasive treatment that relied on my body’s own internal signals to help me heal. My sleep doctor wisely reminded me that Western medicine helps you get through crisis, while Eastern medicine gets at the root of a problem and deals with more long-term effects. Both, he said, are necessary for proper healing.

This can be a hard pill to swallow for people intent on only going the natural route. Take the case of Luitha K. Tamaya, a shamanic practitioner who shunned conventional medical treatments—until she suffered post-partum depression. Her traditional techniques were not enough to see her through this condition. Reluctantly, Tamaya turned to pharmaceutical medication, “a decision that has since had surprising and beautiful results.” The medication helped her heal and, moreover, led her to a new understanding of her more natural beliefs: “I now understand that shamanism can encompass and enrich all of our modern sciences, instead of standing apart from them.”

I have come to the same opinion. What’s needed is a balance of Western and Eastern medical philosophies. I have been on a non-narcotic sleep aid for years. I’ve never had to increase the dose, and it has not caused any adverse side effects. “That’s effective use of medication,” my doctor told me, when I worried I’d been on the medication too long. I continue to complement this conventional treatment with neurofeedback therapy. Similarly, I continue to battle spirochetes and other tick-borne infections with a mix of pharmaceutical, naturopathic and homeopathic remedies.

Only you and your Lyme Literate Medical Doctor (LLMD) can decide what course of action is best for treating your one or more tick-borne illnesses. Your doctor should monitor your reaction to all treatments, whether they are pharmaceutical or naturopathic. As you decide together what’s best for you, just remember, natural is not always better.


1 Bransfield RC. Suicide and Lyme and Associated Diseases. Neuropsychiatric Diseases and Treatment. 2017 Jun; Volume 2017(13):1575—1587



Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

**Comment**

I could not agree more.  I’ve posted articles about sick shaming Lyme/MSIDS patients, but there’s another type of shaming going on within Lyme Land – pharmaceutical shaming.  Patients can do this to one another and even medical professionals are guilty of it.  We recently changed doctors because our LLMD stated we were his longest treated patients at 3 years and made us feel guilty about it.  When symptoms steadily returned after being on a herbal regimen for a year, he refused to believe it was active infection and tried to blame it on “old age.”  Yeah right.  I know my body and have a Masters in Exercise Science.  I know a few things and I certainly know MY body.  My husband, an athlete and avid runner, also can tell what is active symptoms versus the aches and pains of living.

I’ve noticed another trend as well.  Many pure “naturalists,” don’t tell you that they often started with antibiotics that lessened the pathogen load considerably, but give all credit to herbs or some other natural treatment.  This wrongly gives the impression that they only used natural treatments.

I always tell patients to be willing to use everything AND the kitchen sink.  This stuff is beyond surreal.  It has side-lined the strongest, and left successful professionals in a heap.  It causes needless divorces, suicides, and family upheaval of the worst kind with the unbelievable kicker of not being believed and validated.

If I’ve learned anything on this nightmarish journey it’s to be open-minded.

Canadian Tick Expert – Climate Change is NOT Behind Lyme Disease

https://www.linkedin.com/pulse/scotts-ticks-heros-journey-lori-dennis-ma-rp  by Lori Dennis  July 30, 2017

I was just about to publish Lyme Madness last fall, and Dr. Kenneth Liegner, LLMD, suggested that if I was going to include a chapter on Lyme in Canada, then I should definitely speak with John Scott. “John, after all, is the foremost Canadian expert on ticks. He’s among the most learned on this subject,” Dr. Liegner insisted. I was wrapping up the final edits of my manuscript, so including an interview with John at this juncture was simply not an option.

Last week, however, I had the distinct pleasure of chatting with John and his wife, Kit, by phone. They were informative, interesting, expert, driven. Just like the rest of us, they are clearly in the thick of the madness that is chronic Lyme – and they have been at it, side-by-side, for more than thirty years.

The Scotts, married in 1973, have two grown children and three grandchildren all of whom live nearby. Both John and Kit have personally been battling Lyme and co-infections since 1986. Their family remains healthy––a great blessing for them.

In 1990, four years after falling ill, four years after being bounced from doctor to doctor, from misdiagnosis to misdiagnosis, as John’s health was becoming increasingly compromised by severe arthritic, neurological and encephalitic symptoms, he was at last properly diagnosed with Lyme and co-infections by the late Dr. Philip T. Williams in Ajax, Ontario. Kit’s diagnosis followed soon after.

Just like the rest of us in Lymeland, the Scotts were plunged into the Lyme rabbit hole. Just like the rest of us, they experienced plenty of denial from family, friends, doctors, and the world at large. The denial was even more entrenched back then, John recalls. “Back then, we were told that the only way we could have contracted Lyme disease was if we had gone to Long Point which was just not the case.”

It was their four-year search for medical answers, the constant push back, misinformation and disinformation they received from doctors and the feds, along with John’s professional background as a science researcher that drove them both to get to work. In 1991, John dusted off his dissecting microscope and began studying ticks across Canada, starting with the blacklegged tick, Ixodes scapularis. Flash forward to today, and John is one of the world’s foremost experts in tick research. He has been responsible for identifying 37 tick species and publishing 35 peer reviewed scientific articles on the subject.

Recently, John was awarded a Sovereign’s Medal for Volunteers in recognition of 27 years of research and advocacy on Lyme disease and tick populations in Canada. In fact, he has recently conducted a cross-Canada study of ticks on avian and mammalian hosts which he plans to publish in the next six months.

For decades now, John has volunteered 30,000+ hours of his time as a ‘citizen scientist’, as co-founder with Kit and President of the Lyme-Borreliosis Support Group of Ontario (which later became Lyme Disease Association of Ontario, now known as Lyme Ontario ––www.lymeontario.com), writing and publishing a quarterly newsletter called Lyme Alert, organizing and chairing meetings, creating educational material and chairing several large symposiums.

Not only that! Together, the Scotts have educated and supported thousands of patients and their families, and have made Lyme disease a household word in this country. Most notably, John’s evidence-based, peer-reviewed tick-host research proves that anyone can contract Lyme disease anywhere in Canada.

Doctors, politicians, media — take note.

John continues to write letters to journalists and editors setting them straight on the real facts about Lyme disease. After posting one of his well-crafted letters on Facebook this week (see Attachment 1 below), I sent John a few comments from some of his fervent fans:

“He NAILED it!! Can we clone him? “

“BAM! Now, that’s how you pen a response!”

“That was brilliant to read!

“John Scott: One of my heroes.”

John replied, “I will try not to go into a spasm of self-aggrandizement. For me, the pen is mightier than the sword. I don’t know who said it, but it is true. Now, I have our peer-reviewed scientific research to lean on. I expect that our new paper will be published in 10 days.”

While Kit recently resigned from the board of Lyme Ontario after decades of service in order to make room for other things in her life, John will not stop, she tells me. He continues on his mission, thirty-one years later –- a mission to prove to the world that his nemeses, including Lyme deniers, most mainstream doctors, federal politicians, and institutional researchers are wrong about so many things. Already, he has disproven ten myths generated by tick researchers.

“I’m an independent researcher,” he tells me. “I can go in any direction I want and, therefore, I haven’t got flawed science. I can move in any direction and not be blocked. That’s the way it should be. If I were tied in with an institution, my work would be influenced and manipulated.“

For many years now, John has been especially focused on how wrong he believes the authorities are about ticks and climate change. ‘It’s not that John does not believe in climate change,” Kit is quick to point out. “It’s just that he knows that climate change is not the reason for the proliferation of ticks and Lyme disease.”

John explains, “The climate change range expansion model is what the authorities have been using to rationalize how they have done nothing for more than thirty years. It’s a huge cover-up scheme that goes back to the 1980’s. The grandiose scheme was a nefarious plot to let doctors off the hook from having to deal with this debilitating disease. I caught onto it very quickly. Most people have been victims of it ever since.”

“This climate change ‘theory’ is all part of a well-planned scheme. Even the ticks are smarter than the people who’ve concocted this thing,” he says.

Climate change has nothing to do with tick movement. Blacklegged ticks are ecoadaptive, and tolerate wide temperature fluctuations. On hot summer days, these ticks descend into the cool, moist leaf litter and rehydrate. In winter, they descend into the leaf litter, and are comfortable under an insulating blanket of snow. Ticks have antifreeze-like compounds in their bodies, and can tolerate a wide range of temperatures. For instance, at Kenora, Ontario, the air temperature peaks at 36°C and dips to –44°C, and blacklegged ticks survive successfully.

“Ticks are marvellous eco-adaptors. They will be the last species on the planet. Do you see how silly this theory of climate change is as a way to rationalize what’s happening. It’s all a red herring to divert your attention,” he explains.

Divert our attention from what? I ask.

“From what is not happening medically. In simple terms, the feds have diverted our attention by saying ‘let’s worry about ticks and climate change, put all our funding there and we will solve the problem of Lyme disease’.”

Those of us in Lymeland are painfully aware that the problem will not be solved by putting all of the focus on climate change and tick surveillance. The federal government’s single-mindedness is evidenced by the recent announcement of the first-ever Federal Framework and its tick research funding.

“The authorities have been using tick expansion and climate change to get research dollars. Climate change is a popular topic right now, and that is a great source of funding for related research. However, any research on ticks and climate change is inconclusive––in essence, there is no validity. The long-range, futuristic projections and statistical models are bogus science because blacklegged ticks have already been found in northern Canada. In fact, we documented blacklegged ticks on migratory songbirds in northern Alberta dating back to 1998. Any allocation of government funding for ticks and climate change research is a complete waste of taxpayers’ money. It will not help Lyme disease patients one iota.”

“One thing is certain,” John says. “The medical profession is woefully ignorant about Lyme disease. When it’s mentioned, they withdraw, they are mute and they quickly move on to another topic.”

“Back in 1992, when I spoke with Dr. Harvey Artsob, Head, National Microbiology Laboratory, he said, ‘I don’t know what we are going to do if the ticks [Ixodes scapularis] cross the border.’ I replied, ‘Harvey, the ticks are already here.’ He paled,” John says.

“Obviously, at the time, Dr. Artsob was told by the medical profession to get rid of this problem, so they didn’t have to deal with it. The fear of having blacklegged ticks and Lyme disease in Canada and, having to deal with it, was enormous. The goal was to have the federal and provincial governments squash the problem––to hell with the patients. They concocted all kinds of schemes to dismiss and discount the problem, and these defamatory tactics have cascaded forward from then to now,” John tells me.

And what about this ‘fast track’ Lyme vaccine that’s coming down the pike? I ask him.

“Vaccines don’t work because this stealth organism will go through the immune system. You can’t stop it. It goes into the T-cells, the B-cells, scar tissue, eyes, brain, bone, tendons, ligaments, and nerve cells. You can put all the vaccine into a person you want but you can’t stop it.”

“It’s the doctors and their investments against the rest of the world,” he says.

“OHIP-funded doctors are useless when it comes to ticks and tick-borne diseases. Ticks are exploding; the medical system is imploding. OHIP doctors get paid regardless of what they say or do. There is no therapeutic alliance between doctors and patients. No trust.”

He took the words right out of my mouth. This, my friends, is the madness that we cannot ignore.

Kit and John continue to suffer from this disease. Apart from other protocols, for the past five years they have been using rife and they have found it to be very effective on certain tick-transmitted pathogens.

“It is far from the “magic bullet”, says Kit, “but we did antibiotics for 20 years, on and off, and just could not tolerate them anymore. We also found that the antibiotics became less and less effective the more we used them. We had to do something, so we investigated rife treatment. We have reduced our pain dramatically and other symptoms too, but the herxes can be quite severe so we don’t treat for very long at any one time, and only every 14 days. We do IV Vitamin C treatments once a month to get rid of the neurotoxins. I have attached our Information Sheet on our 3D Coil rife machine. If you know anyone who is interested, we’d be happy to be in touch via e-mail.”

Kit ends the call by saying, “Thanks again for Lyme Madness. You’ve done the Lyme community a great service.”

John says, “I believe you saved Matt’s life. We can certainly appreciate what you’ve gone through. Please keep up the great work! We need you!”

For these kindnesses, I am grateful. And with all that I now know about John and Kit Scott and their invaluable contribution to this Lyme community, it is clear that we have two of the greatest Canadian Lyme heroes in our midst.

—————————————————————————————————–

Lori Dennis, MA, RP is a Registered Psychotherapist and the author of LYME MADNESS, named #1 NEW RELEASE in Immune System Health on Amazon. LYME MADNESS is available on Amazon. For more information on Lyme Madness, go to loridennisonline.com.

For more on Climate Change:  https://madisonarealymesupportgroup.com/2017/07/08/global-warming-numbers-fudged/

https://madisonarealymesupportgroup.com/2017/07/25/brave-new-worlds-the-expanding-universe-of-lyme-disease/

Support Group For Parents of Children With Lyme

https://groups.yahoo.com/neo/groups/lymeparents/info

Group Description

Lymeparents is a virtual meeting place and source for information and emotional support for family members of children with Lyme and other tick-borne diseases. It is sponsored by LymeDisease.org, a leading national patient advocacy nonprofit.

If you are looking for information about children with Lyme disease, here are some links to our website to help you get started:

https://www.lymedisease.org/lyme-basics/lyme-disease/children/

https://www.lymedisease.org/when-your-child-has-lyme-disease/

https://www.lymedisease.org/quick-lyme-intro/

DISCLAIMER: All information posted on this site is the opinion of the author(s) alone and is provided for educational purposes only. It is not to be construed as medical advice regarding the treatment of any symptoms or disease. Obtain medical advice from your physician.

Group Information

Group Settings

  • This is a restricted group.
  • Attachments are permitted.
  • Members cannot hide email address.
  • Listed in Yahoo Groups directory.
  • Membership requires approval.
  • Messages are not moderated.
  • All members can post messages.

Diagnosed with HIV – 14 Year Old Really Had Lyme

https://www.lymedisease.org/lyme-sci-hiv/  Aug. 9, 2017 LymeSci, by Lonnie Marcum

LYME SCI: My daughter tested positive for HIV at age 14

It was a Thursday afternoon, five years ago in August. I remember it like it was yesterday. That sinking feeling in the pit of my stomach. He looked at me and said “I have good news and bad news. The good news is: it’s not cancer. The bad news is: it’s not cancer.”

I froze. What did he mean?

My instincts told me something was terribly wrong with my daughter. She had never been this sick in her life. We knew it wasn’t the flu and all the other typical teenage stuff came back negative.

I’ll never forget the look on her pediatrician’s face. I’d never seen him look so unsure. Not even when she was having trouble breathing at two months old, when he had scooped her from my arms and carried her across the complex and into the hospital where he held her while they took a chest X-ray. He knew then, even before the test came back, what it was—RSV—a virus most children acquire before the age of five.

But not this time. This time was different…

He was very quiet. He could tell by looking at my daughter she wasn’t well. She was pale, having lost most of the summer tan she had gained while playing water polo. Her nail beds were blue. We had asked the nurse to turn the lights down because her head hurt so bad. She gave him a weak smile when he asked how she was feeling.

This was her favorite doctor. The man we had both come to know and love over the past 14 years. I had trusted him with her life on more than one occasion. Normally we would chat, catch up on personal stories. Even when she came in with severe stomach pain two years before, we enjoyed small talk. Smiled. Even laughed.

But not this time.

He sat on the stool beside her. One hand on hers, the other holding her most recent lab results.

“We don’t know what it is. At least if it were cancer we’d know how to treat it,” he said. I looked at him in shock, wondering what in the world he was talking about.

This man. This board-certified pediatrician with a specialty in cardiology, who sees many of the sickest kids in our county, did not know what was wrong with my child. My heart sunk. I felt like panicking. I wanted to cry. I wanted to scream. Instead, I sat there in stunned silence. I was in shock.

How much worse could something be than cancer? I couldn’t wrap my head around what he was saying. I wanted to call my husband. I wanted him with me. But there I was, like so many times before. Just me, my sick child, and this wonderful doctor whom I trusted.

I didn’t want to show my fear in front of her and I could tell the doctor was trying really hard to contain his feelings. Oh, it still hurts to re-live that day. I honestly didn’t think I could feel any worse.

But I was wrong.

In the meantime, my daughter’s fever continued, her white count dropped and a multitude of new symptoms popped up every few days. She wrote about her symptoms here:  http://the-life-of-an-insomniac.blogspot.com/2016/03/my-story.html

Two weeks later, after returning from a full immunology work-up at a large teaching hospital, we were back in the pediatrician’s office. This time I brought my husband.

The moment we walked in, I knew something was wrong. The nurse took us back to the room but lacked her normal cheeriness. “The doctor will be right in,” she said, then closed the door behind her. We waited in anticipation. The minutes ticked by.

When the doctor walked in he was surprised to see my husband. “Did the hospital call you with results?” he asked. I said, “No. They told us you would go over them with us.”

“Well,” he said, “we’ve had a bit of a scare. I’ll wait for you both to sit.” My husband and I both found a chair.

The doctor went on, “Her HIV test came back positive……”

BOOM! I couldn’t hear the rest of what he said.

After my mind stopped screaming ‘WHAAAT!?!” I asked him to repeat what he had said. He explained that her HIV test had come back positive, but he and the specialist reviewed the test and felt the numbers didn’t line up.

I don’t remember the exact sequence of events because I was still in SHOCK! At some point the specialist called the pediatrician and they decided that it was likely an error at the laboratory.

The conversation was kind of a blur. I was so happy that my husband was there to listen. Luckily by the time we left there the pediatrician had assured us the results were negative. We decided to re-run the test just to be sure, and like every parent in this situation—I worried for the next result which did eventually come back negative.

I left the pediatrician’s office that day with no clues as to the source of my child’s illness, a referral to an Infectious Disease specialist, and my motherly instincts telling me to keep searching.

That very bad, horrible August day was just the beginning of a long nightmarish year-long journey to an eventual diagnosis that was not cancer, not HIV, but instead Lyme and two other tick-borne diseases. You can read about our Lyme journey here:  http://tenaciouspt.blogspot.com/2014/11/why-am-i-blogging.html.

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea Email her at: lmarcum@lymedisease.org.

Look at the 14 year old today!

 Approx 10 Min Five Facts About Lyme Disease

Here’s her Valedictorian Speech despite being ill with Lyme/MSIDS:  https://madisonarealymesupportgroup.com/2016/06/27/speech-by-valedictorian-with-lyme-disease/