My friend had sent me a link on Facebook to an interview with Ally Hilfiger, the daughter of the famous designer. She described an illness she had had since she was 7-years-old that caused flu-like symptoms, joint pain, muscle pain, nausea, sore throats, headaches, and stomach aches. As she got older she suffered from neuropsychiatric symptoms. Finally, at the age of 19, she was diagnosed with Lyme Disease! All of a sudden it all clicked for me! A diagnosis of Lyme Disease allowed for all of the puzzle pieces to fit together seamlessly in my daughter’s case! From the flu-like symptoms my daughter had in September to the joint pain to the strep infection and the horrible reaction to the Amoxicillin to the neuropsychiatric symptoms, and the inability to walk! It was clear as day. I researched the disease further and found out that the disease exists in California–in fact, contrary to the mainstream understanding, it exists in every state in the U.S. and on every continent except Antarctica. It is contracted from a tick bite. 30 to 50% of the people who are infected with the bacteria (Borrelia Burgdorferi) do NOT develop what is known as a bulls-eye rash (which is, unfortunately, one of the main criteria for diagnosing Lyme Disease and treating it in a timely manner). The (stage of) tick most-likely to infect humans in California is the nymph (vs the adult) and it is the size of a poppy seed so it may not be detected at all. It injects a numbing agent before it starts feeding on your blood so you may not even feel it. Inside the tick’s gut it carries the lyme disease bacteria along with possible multiple other co-infections such as Babesiosis (a parasite similar to malaria), Bartonella (“cat scratch disease”), and Erlichiosis. When the tick feeds on your blood it releases this bacteria and it is free to spread throughout your entire body causing any number of symptoms. (Photos above credit: http://www.lymedisease.org)
If you have been reading from the beginning you will know that my family likes to camp and hike. Over the summer of 2015, we hiked in Utah and California, but the last place we hiked was in late July in the cooler, moist woodland forest of Mammoth Lakes from Devils Postpile to Rainbow Falls (the perfect habitat for ticks). My kids sat and leaned against tree trunks and balanced along logs, they kicked up leaves and dirt and walked near the grass. They wore bathing suits and shorts and even swam in the frigid lagoon at the bottom of the falls. Six weeks later, in the first week of September, my daughter had flu-like symptoms including a low-grade fever, headache, stomachache, and fatigue. (We cannot be 100% sure that Mammoth is where she contracted Lyme but it does fit the puzzle well. We never saw a tick or a rash until later–but even then it was very enigmatic).
UPDATE: ON JULY 15, 2016, MY HUSBAND WENT MOUNTAIN BIKING ON ONE OF THE TRAILS NEAR OUR HOUSE WHERE WE HIKE AND SAW THIS POSTER (PERHAPS LYME WAS CONTRACTED RIGHT IN OUR OWN BACKYARD)!
So here’s a recap:
In September my daughter had flu-like symptoms then joint pain started in her knees and migrated to her ankles and hips. She also had pain and weakness in her arms and she just did not feel well. The symptoms continued with varied levels of severity through October and November. Her ANA titers were high and rising. Then, in November, my daughter
contracted strep. She felt very weak and fatigued, she had a sore throat and her joints hurt. Her rapid strep test came back negative so she was not started on antibiotics for a few days (until the culture came back positive). After 8 days on Amoxicillin she broke out into a horrible rash (with a bulls-eye or “targetoid” appearance) then developed itchy hives from head to toe, swollen and severely achy joints, fatigue, and agitation. People with Lyme Disease have come to know very well the phenomenon of the Herxheimer Reaction, a die-off of the bacteria that releases toxins and proteins and increases inflammation. When I first read about the “herx” when researching Lyme Disease, bells sounded off in my head! No wonder the doctors could not give us any answers as to why my daughter was having the reaction in December–her symptoms and clinical presentation did not exactly match the disorders that could arise from the strep virus but they also did not match an allergic reaction. Looking back, it seems she was having a herx to the Amoxicillin (which is an antibiotic commonly used to kill the Lyme bacteria). She had taken Amoxicillin previously in childhood for an ear infection (and probably other things) so calling her response an allergic reaction did not really fit the picture either. Her odd behaviors began after she started on Prednisone (which she was put on at a low dose to clear the hives and only stayed on for 4 days). Her doctor told me that steroids can cause hyperactivity but my daughter had taken Prednisone a couple of times in the past and had never had such a reaction (not to mention agitation, howling, singing in gibberish, and speaking in different voices, are NOT behaviors considered to be hyperactivity in my book)!! If my daughter ever gives me permission to post the video from that day you will clearly see she is in a different world–I’m not gonna lie–my mind went straight for images of The Exorcist! After being dismissed from the children’s hospital in December her symptoms continued. Our HMO Rheumatologist diagnosed her with Systemic Lupus (SLE) in January but had started her on immuonosuppressants in late December. My daughter took the generics of the drugs known as CellCept (an immunosuppressant used for transplant patients) for 9 weeks and Plaquenil (an anti-malarial drug) for 3 weeks on top of that. I believe that these drugs made her worse. Looking back, it seems that the inflammation may have gone down but the act of depressing her immune system made her body more accessible to the bacteria and viruses in her system. And during her first 10 days on Plaquenil her odd behaviors were more severe (perhaps another herx)? By Leap Day at the end of February she could not walk because the pain in her feet/legs was so bad. She was diagnosed with a psychological disorder (Somatoform) by the specialists at the children’s hospital after being hospitalized a second time for a full week. They adamantly stressed that she did not have Lupus and we took her off the immunosuppressants. Her symptoms continued and her anxiety, irritability, and emotional lability got worse. She had pain in her legs everyday–she usually just coped with it but some days it was so bad she could not walk. If she participated in too many activities one day her energy was zapped for the next 1-3 days. She was missing 2 days of school on average per week from February through June. Fortunately, her school created a 504 plan for her.
Lyme Disease is the “new great imitator” (the old one being Syphilis). The spirochete (spiral-shaped) bacteria can dig deep into the cells of every part of the body and it is very comfortable in the brain. It can itself suppress the immune system, change form into a cyst, form biofilm barriers, and change the proteins of its cell wall all to avoid your immune system! Those are some reasons why it can go undetected on tests! My daughter tested negative on the immunoassay they did for Lyme Disease in February but she had been on immunosuppressants for 9 weeks, plus she had taken Prednisone and antibiotics (which also suppress the immune system) so I don’t think she had a chance to test positive! (It is helpful to understand that the current tests for Lyme Disease test for antibodies to the bacteria so if your immune system is shot the level of antibodies needed to test positive will not be present).
Once I had put all of these pieces together I knew I had to seek help from someone other than our HMO network’s doctors. I joined a forum on http://www.healingwell.com and got responses from several people urging me to have my daughter tested by an LLMD or Lyme Literate Medical Doctor. (You can get more information about LLMDs on the ILADS —International Lyme and Associated Diseases Society–website). So I made an appointment with an LLMD. He took my daughter’s history and sent off her blood to be tested at the IGeneX Lab, a lab that specializes and has more specific tests for Lyme Disease. A long 3 weeks later we got her test results. Now this is confusing in and of itself, but it makes it even more difficult that the CDC (Center for Disease Control) has its own criteria for a positive test. They use the test results, however, not for diagnosing patients but for monitoring the presence of the disease around the country. Therefore, the test is not supposed to be used for diagnostic purposes, rather the doctor can use it as support for his clinical diagnosis (and, in fact, a Lyme Disease diagnosis is based on the history of symptoms and other factors such as the actual tick and bulls-eye rash if present). The Western Blot tests for antibodies to the lyme bacteria. You can read more about it on the link provided because it is quite complicated to explain. My daughter tested positive to the following bands on the IgM test: 18, 31, 41, and 58. She tested positive to the following bands on the IgG test: 31, 41, 58. (Table credit from http://www.lymedisease.org)
In summary, she would not test positive according to CDC criteria, but she tested positive to bands that are highly specific to the lyme bacteria (borrelia burgdorferi) meaning the ONLY way she could test positive to those bands was if she had been exposed to the lyme bacteria. I have read numerous viewpoints that if you have just one of the specific bands on the test it is a definitive positive. But mainstream doctors are either not in agreement or they are just ill-informed. Either way, her LLMD diagnosed Lyme Disease based on her history and the test results. He also ordered tests for vitamin D and ASO (strep titers). My daughter was insufficient in vitamin D (for reasons I do not yet quite understand is common in Lyme Disease). And this is also when we found out that her strep titers had risen to 539 (with the norm being <99) and no outward sign of a strep infection.
The reason I explain this is because there is huge controversy surrounding Lyme Disease from diagnosis to treatment to the belief in chronic lyme disease itself. Most people think that Lyme Disease can be treated easily with a short round of antibiotics but the people living with the disease in a chronic state of illness would tell you otherwise. I have read numerous articles that state if you don’t catch the disease and treat it within the first few weeks it can spread, evade the immune system and become chronic. Even those treated with short-term antibiotics will report that their symptoms come back because they were not given enough time for the antibiotics to kill ALL of the bacteria and they resurge once the antibiotics are stopped. The CDC will argue that people who have continued symptoms have residual damage or that the infection caused an autoimmune response that is exacerbating the symptoms, therefore long-term antibiotics are not necessary. Plus we have the whole antibiotic-resistant super bug problem so you can see where their line of reasoning comes from on wanting to nix the long-term antibiotics.
I always try to look at arguments from a non-biased standpoint and I can be quite skeptical, but, at this point, with what we have been through and with all of the scientific articles I have read, I believe the spirochete lives on in your body so long-term antibiotics may be the only answer for some. Unfortunately, there are studies that indicate that antibiotics will never work because of the sneakiness of the lyme bacteria. (The same way it can evade the immune system it can evade the antibiotics). That’s why many people are living with chronic Lyme Disease. It is interesting to note that the CDC reported for years that the incidence of Lyme Disease in the U.S. was only about 30,000 per year but in 2013 they admitted that those numbers were closer to 300,000 per year! Yet doctors willing to treat people with chronic lyme and use alternative treatments (such as long-term antibiotics) have been prosecuted–many have lost their medical license, their practice, and/or declared bankruptcy! For more information on the Lyme Disease controversy you can watch a documentary called “Under Our Skin” (I found it on amazon prime for $2.99 rental). You can also read a fantastic book called “Cure Unknown” by Pamela Weintraub, a prominent medical journalist whose whole family has suffered from Lyme Disease.
My daughter started on a regimen of antimicrobial herbs (Banderol and Samento) in mid June, 2016. She also takes Multi-Nutrients, Del Immune V, and Vitamin D. In the meantime, I also asked her new pediatrician to test her for PANDAS/PANS. Because of the ASO (strep titers) she agreed. She was actually very honest with me and said that she used to turn her nose up at such requests but she realizes now that she needs to keep an open mind. Thank goodness! I was a bit dismayed, however, to learn yesterday that the results were reported to her on June 15th but she never called to talk to us about them and it has been nearly a month! I have been anxiously waiting on those results! I ended up emailing Moleculera Labs and they are the ones who told me that the results had been reported way back in June. My daughter’s pediatrician is on vacation but her nurse gave us a copy of the results (which are positive by the way)!! I will post more about that later.
In the meantime, we are almost caught up to the present. My daughter remains the same and it’s hard to tell if she is having herx reactions to the herbs but she has had a few odd things happen. I will update those in future posts as well!