Help Charlie Fight Lyme

$2,200 of $18k goal

Raised by 22 people in 17 months
Kayla Gabriel
on behalf of Kelley Siliven
 AUSTIN, TX
Help Return Charlie’s Childhood: Help him Overcome Lyme Disease

Charlie’s Story
I met Charlie when he tagged along to work with his mom. He was 8 years old at the time and what a bright and fun soul!  He’s 12 now, and last time he came by he was telling me about his interest in traveling. When he’s at home, he Skype’s with other kids around the world, reads Star Wars books and plays video games.

I only see Charlie on his “ok” days though, which are few and far between lately. Charlie is suffering from Lyme Disease and the pain affects him daily. It’s even worse because, unbelievably, it’s taken 11 long years for him to be properly diagnosed.

I’ve created this page in hopes that you’ll join me in helping to return Charlie back to a fun-loving, energetic and happy self all the time: a boy who can finally enjoy his childhood, explore the world, run around in the sunshine with his friends again and feel well enough to explore hobbies and interests.

Help support his future by donating to his medical fund. He’ll be getting treatment at the Hansa Center in Kansas, and anything helps. If you can’t donate, you can write a message of encouragement to Charlie, and share his story and needs with your friends and family. Email him an encouraging message to helpcharliefightlyme@gmail.com.

---$30 will cover one tank of gas towards the 1,096 mile round trip
---$50 will cover one of the many monthly treatment supplements in the post clinic protocol
---$100 will cover one hour of treatment at the Hansa Center
---$600 will cover a day of treatment at the Hansa Center

Why ask for help?
I’ve been friends and colleagues with Kelley for several years as we’ve worked together at a nonprofit.  It’s not her style at all to ask for help, but right now she needs us to get Charlie the treatment he requires.  You see, health insurance in the U.S. does not recognize the long-term effects of Lyme Disease yet and therefore won’t cover long-term Lyme related treatments.  So she must pay for Charlie’s treatment out-of-pocket, and has exhausted her income and savings to pay for their many extensive health related costs.

How has Lyme affected Charlie?
He has a very serious and progressive health condition stemming from Chronic Congenital Lyme Disease with co-infections of Babesia, as well as, other parasites and viruses invading his body, tissues, organs and nervous system. If Lyme isn’t bad enough by itself, Charlie went undiagnosed for 11 years and has developed two serious complications that Lyme triggered: Chronic Regional Pain Syndrome (CRPS) and Pediatric Acute-Onset Neuropsychiatric Syndrome Associated with Streptococcal Infection (PANDAS). He has also been diagnosed with Ehlers Danlos Syndrome Hypermobility Type (EDS), which may also be a complication of Lyme or may be a genetically inherited disorder all on it’s own.

Because he went undiagnosed for so long (despite going from doctor to doctor, specialist to specialist), he has suffered tremendously with worsening symptoms of high constant abdominal pain, nausea, extreme nerve pain (especially in his feet where at times he cannot walk or even have his skin touched), fatigue, insomnia, flu-like symptoms, autoimmune complications, a severely compromised immune system (CD57 is 32 and should be well over 200 and he has had over 11 viruses/infections this year alone).  He also has debilitating neuro symptoms, bone loss, ulcers from H Pylori, vision issues, balance issues, intolerances to many foods and chemicals and so much more. Actually his symptom list is over 2 pages long typed - which is very typical of Lyme. His health has become more concerning over the last 3 years; he has not been able to attend a full year of school and is instead being schooled by the district at home. He’s lost many of his interests, friendships, and joy of life due to the long standing illness.

He tries to hide his pain from others – so as to not come across as different or weak. And many just don’t understand the variety of his symptoms, especially in the South where we live since many people don’t know about Lyme. It’s also getting harder for him to stay positive and strong, especially with the overlapping neuro issues.

His mother, Kelley, has found an internationally renowned clinic that specializes in children with Lyme called the Hansa Center that has had success in getting children’s lives back and fighting the disease. The clinic is expensive and as most Lyme treatments, not covered by insurance.

Charlie’s Treatment: The Hansa Center
The Hansa Center has been treating chronic Lyme in adults and children for over 20 years. Their model reflects Biological Medicine therapies from the U.S. and also European countries, primarily Germany and Switzerland. Dr. Jernigan, the founder of Hansa, has written the book Beating Lyme Disease where you can gain a full understanding of the Hansa treatment approach. The team of doctors believe that their method is superior because it turns on the body’s immune response to identify the infection in all forms and to restore the microbe balance of the body. They provide treatment that works with the natural design of the body, thus empowering the immune system to kick in and start healing itself. Their philosophy is to treat the cause of the illness (vs. masking symptoms) utilizing extensive non-invasive diagnostics and treatments. It is known as one of the most technologically advanced natural healthcare clinics in the world.  They treat chronic illness in a way that addresses the damage done and then supports the body to fight while also circumventing the many side effects with traditional treatments, which can be immense. They see patients from all over the globe and have experienced some incredible international success in dealing with severe and late-stage Lyme.

Kelley has also spoken first-hand with other mothers who took their children with Lyme to Hansa and is greatly encouraged at the turn-around these moms have seen in their children and the continued progress by following the post-clinic protocol.

The Search for What Was Wrong
The story actually begins years before Charlie was born – it begins with his mom, Kelley, who was bedridden for 2 years at the age of 21. She suffered from an array of extreme symptoms that no doctors could figure out.  The Epstein Barr Virus was identified after the 2nd year, but didn’t explain the whole story. She slowly, after two years became “mostly functional” again. But not without many pretty serious health bumps along the way, where she has lost her functionality on and off several times over the past 30 years.

It wasn’t until Charlie was 4 years old that Kelley discovered she had Lyme Disease with co-infections confirmed through a Western Blot (CDC Positive) and again confirmed last year by another positive Western Blot.  But no one mentioned that it could be transferred to Charlie in utero.

At 2 months of age, Charlie started exhibiting his first symptoms of myoclonic jerks when he slept - which he still has to this day. Then came a never ending syndrome of symptoms from eye issues, to chronic infections, to sensory processing disorder, skin problems, bowel problems, chronic abdominal pain, all over body pains, falling all the time, sweats, and more. After taking Charlie to virtually every specialist under the sun (over 40 doctors) there was still no answers. She even took him to an Infectious Disease Doctor to run the Western Blot by Quest Diagnostics, but it came up negative. Now it is known that the Lyme testing and most labs like this one are highly unreliable with false negatives, which is especially the case in Chronic Lyme.

Charlie’s symptoms would wax and wane over the years. One moment he can feel “ok” and then the next he is a complete mess.  Lyme can be known as an “Invisible Illness” because many patients can “look” fine from an outsider.

When he was in 4th grade, everything started to worsen and become even more strange and painful for him. He would be too sick and have such high abdominal pain that he would be unable to attend school more often. Then in 5th grade he developed a serious pain syndrome known as Chronic Regional Pain Syndrome (CRPS) aka Reflex Sympathetic Dystrophy (RSD). This is one of the worst diseases known to man and ranks higher than cancer and amputation on the McGill pain scale. This too would wax and wane with times of remission.  As he got older he was able to express better what he felt in his body and his mind. It was shocking to Kelley to know this, and know that he has not ever known what normal is. When he had experienced a few brief moments of almost zero pain during some treatments recently he said, “So this is how you normal people feel all the time?”.  She is encouraged when she sees his true self in the moments of remission where he is active, happy, funny, fun-loving, sweet, social and very bright. But these moments are fleeting as the disease progresses.

The Diagnosis
Finally, last year he was confirmed by 4 different Lyme Literate Doctors as having Congenital Lyme (specifically Borrelia with co-infections of Babesia, Hpylori, as well, as other parasites and viruses) which was at the root of all his health issues and cause of his severe complications. The right testing and right doctors finally confirmed it.

Charlie has been struggling so much in the past 3 years, that he has been unable to physically go to his school and attend a full year of 5th-7th grades and has been homebound most of the time. When he is able to go back sometimes, he crashes again for weeks/months either because of a fall that triggers CRPS or catching infections like strep/PANDAS or viruses, since his immune system is shot.  These various infections trigger the Pandora’s Box of symptoms again and again. Charlie’s PANDAS was triggered in a big way late last year and has been very frightening and terrifying to him. When he gets strep his anxiety is so high that he is unable to be in a room by himself.

All these symptoms are major complications which were a result of the Lyme not being caught in its early stages.

The Journey
Sadly Charlie and Kelley’s road has been typical of many with Lyme Disease: they went undiagnosed and/or incorrectly diagnosed for years, and they spent thousands and thousands on specialists, therapies and medications to deal with each symptom as they arose.  Now they deal with the daunting task to find Lyme experts (Lyme Literate Medical Doctors aka LLMDs) and treatments that work and that do not cause overwhelming side-effects.  And they’re still trying to figure out how to pay for all the treatment and trips and medicines. It has been an overwhelming daily life for them. Kelley has tirelessly been Charlie’s main caretaker and advocate throughout; she’s never given up on him, researching for him,  or believing in him and supporting him. All this even with her own Lyme related health challenges.

What They Have Done Since Diagnosis
Last fall they tried the antibiotic route with a well-known LLMD (Lyme Literate Doctor) in Missouri, but Charlie was unable to tolerate them due to his stomach issues, side effects and low immune system. He is also unable to consider IV antibiotics due to his pain syndrome flaring. Even so, while antibiotics are excellent for those that have been just infected, they are not as effective for Chronic Lyme. In fact, antibiotics can actually do more damage to the body and immune system.

The herbals/homeopathics/naturals/ancient remedies are known to be very powerful and to not cause as many problems when guided by a naturopath or holistic/integrative practitioner. They also actually help restore the immune system vs. deplete it further (as antibiotics do). These natural treatments have proven more effective by many LLMD’s and many patients for the cyst forms and at preventing and breaking the biofilms and circumventing resistant strains. They are better at “targeting” toxic bacteria instead of “blowing up” everything in their path; this focus helps with detoxing the very toxic dead bacteria and lessens the effects of severe herxheimer reactions  - where a patient can feel so much worse and actually be hospitalized as the dead bacteria releases the toxins. Most all LLMD’s use this integrative approach with herbals with careful detoxification – it is the norm now.  Lyme treatment is extremely complex and not a one size fits all. Different people respond to different things.

Charlie is currently being treated by a team of local and out-of-state specialists.  Locally he has a pain management doctor, a primary care physician, and a doctor who practices functional and holistic medicine. His out-of-state care includes a team in Seattle specializing in Lyme & PANDAS (again, not local because it is very difficult to find LLMD’s that also treat children in the South).  The Seattle specialists have been trained by and still confer with the internationally renowned Dr. Dietrich Klinghardt.  They are leading players on the Lyme scene and take an integrative and calculated approach, always keeping the individual patient’s condition in mind. They’ve been able to treat Charlie’s multiple complications in a certain order to circumvent the many side effects associated with treatment – which can be immense. They have been using holistic, natural, alternative and pharmaceutical treatments as needed. Charlie’s stomach has been in turmoil over the years and he is ultrasensitive to many things, which has been a big challenge. Thier treatments since March have been helpful to get him out of each crisis quicker and they have made some progress in the intensity of his pain. They have also been preparing his body to handle the next phase of treatments to address the bacteria, pathogens.

But his case is too complicated with constant crises, thus treating remotely has proven too difficult to realize the full treatment plan yet. This is where the Hansa Center comes in. He will be going to the Hansa Center for intensive treatment over 2 weeks to get his immune system stabilized and functioning at a higher caliber so he can progress in treatment and fight off this disease. It is anticipated that he return for a week of follow-ups and treatments at Hansa 3-4 more times throughout the first year due to his complex and longstanding infection.   

They need help
Treatment for Lyme is very expensive and many times not covered by insurance due to the sad political atmosphere and conflicts of interest surrounding it. (See Under Our Skin Documentary). The Hansa Clinic is no exception. The cost of the initial 2 week program is $8,400, the hotel will be about $1,350, follow-up visits for a week are $4,000 each 3 times the first year, and supplements post-clinic could add another $1,500 easily, totaling over $20,000. Any amount you can donate is so greatly appreciated. Thank you!

More Information on Lyme Disease
Lyme Disease is epidemic with a minimum of 300,000 new cases a year in the U.S. and millions who already have it. Lyme Disease is a very poorly understood disease that is very serious and life-threatening. It is caused by a spiral shaped (spirochete) bacteria Borrelia Burgdorferi, and you can get it from ticks, mosquitos and more. It is now known that it can be passed from infected pregnant mothers to their infants (28 peer-reviewed studies). It is similar to syphilis in this way. Many times the ticks also contain many other nasty pathogens. Lyme has been dubbed as MSIDS – Multi-Systemic Infectious Disease Syndrome - since it is like a Pandora's box involving not only the bacterial and parasitic co-infections but also associated viral, fungal infections causing immune issues, inflammation, hormonal disorders (even in kids), mitochondrial dysfunction, sleep disorders, cognitive problems, inability to efficiently excrete environmental toxins/heavy metals and detoxification problems and many more.

It is also known as the “Great Imitator” as it can mimic up to 350 other diseases.  Many are misdiagnosed as MS, ALS, Rheumatoid Arthritis, Parkinson's, Alzheimer's, Fibromyalgia and Lupus, to name a few.  Lyme can manifest multiple different symptoms in different people that cause destruction in every single body system. It attacks connective tissue, the organ systems, the blood, skeletal and muscular systems and loves to set up shop in the nervous system. This wreaks havoc on the entire functioning of the human body. It can wax and wane, by going dormant where one experiences moments of remission. But once any kind of stressor comes along, whether it’s a simple cold, falling down or emotional stress, it comes out. These highly intelligent cunning pathogens know how to evade the immune system and even join forces with other pathogens such as parasites to create communities and work together to survive.


CRPS & PANDAS Information
CRPS Chronic Regional Pain Syndrome (aka Reflex Sympathetic Dystrophy or RSD) is a chronic neuroinflammatory disorder that occurs when the nervous system and immune system malfunction as they respond to tissue damage from even simple trauma. The nerves misfire sending constant pain signals. One of the worst pain syndromes known to man ranked by the McGill Pain Scale. It is one of the worst symptoms that Charlie has to endure.

PANDAS (Pediatric Acute-Onset Neuropsychiatric Syndrome Associated with Streptococcal Infection) is an autoimmune disease that attacks the brain and creates extreme anxiety, OCD, and tics when the patient gets strep.


Further Reading and Information
Lyme Informational Video: well-done and easy to understand, this short video can help you learn more about the big crazy picture in 5 minutes: http://www.ilads.org/ilads_news/2015/learn-more-about-lyme-video/

The Lyme Awareness Challenge campaign is excellent in condensing some of the main facts about LD. 
http://lymediseasechallenge.org/
http://lymediseasechallenge.org/the-facts/

Award winning and eye opening documentary Under Our Skin about Lyme Disease: https://www.youtube.com/watch?v=2JgR_Jfbhv8

Suzy Cohen on Lyme Disease; in this article, she mentions Dr. Jernigan as a top specialist: http://suzycohen.com/articles/lyme-disease-and-bartonella-more-common-than-you-think/

Dr. Jernigan talks about Hansa Center treatment: https://www.youtube.com/watch?v=PTWXpGo_E0w

Children & Lyme Disease Infographic: http://www.childrenslymenetwork.org/children-lyme/children-lyme-disease-infographic/

CRPS/RSD information: http://rsds.org/telltale-signs-and-symptoms-of-crpsrsd/

Children with Lyme & PANDAS: http://www.childrenslymenetwork.org/

Ehlers-Danlos Syndrome:   http://www.ednf.org/what-eds

Here’s an interview with Amy Tan, author Joy Luck Club, about her struggle with Lyme Disease: 
http://abc7news.com/health/beyond-the-headlines-lyme-disease/242626/


What more can you do
---Sign and share the Petition on this link to ask Congress to continue to investigate the CDC, IDSA & ALDF’s handling of Lyme. This link also has an incredible amount of information and studies - even by state.
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf

---Protect yourselves, as ticks are in every state in the U.S. and in most all countries around the world:

---Here is how to remove a tick properly (always have needle nose tweezers on hand! – Yes, there are wrong ways to remove a tick): http://www.lymedisease.org/lyme101/prevention/tick_removal.html

---When out in the woods, camping, in high grass or highly infested areas such that deer live in: Tuck in your pants into your socks. Spray Permethrin on clothes (only). Studies show that DEET doesn’t work near as well as Permethrin on ticks and is way toxic. For skin, certain essential oils have been found extremely effective.

---And do a tick check after hiking or being in wooded areas. Check the folds of the body.

---If you live in a wooded kind of area or where deer or mice might be near, here is something for many home outdoor environments that has great reviews from Lymies: http://www.ticktubes.com/

---If you know anyone that has been experiencing a syndrome of symptoms (including neurological, pain, joint stiffness), that no one can explain and they are not getting better, please ask them to find an LLMD and be tested by the Western Blot. Note that the test should be evaluated by IGenex Labs which is the most sensitive lab available at this time.
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Update 3
Posted by Kayla Gabriel
2 months ago
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Hey everybody, here's a wonderful news update from Charlie's mom, Kelley, about how Charlie is doing this year!
~~~

Happy New Year all! It's been quite a while since an update, so here it goes.

Charlie’s recovery is going EXCELLENT! So many symptoms are down and some accompanying complications are resolved. There is still a ways to go, but he is now at a point where he can function much better on many levels – more than I’ve seen in years. With his health improving he’s been back in school, interested and participating in hobbies and social activities again. Some of his new hobbies include playing all kinds of musical instruments, putting together Gundams models, playing Magic the Gathering with great skill at tournaments with others. It’s been 4 long years since I’ve seen him like this. He still struggles with some fatigue, lingering neuropathy/pain, anxiety, ADHD and other things in which the list is too long still. We are not finished with treatment, but I am overjoyed at this tremendous progress! Below are some details of what has transpired.

It has been confirmed through DNA testing this fall that Charlie indeed has Borrelia burgdorferi, Babesia divergens, Bartonella bacilliformis. This is known as the worst combination of Lyme and co infections – the sickest of the sick in the Lyme world have these. All the specialists knew he had these 3 based on previous tests and symptomology. But the DNA Connexions test totally confirms it - as there are no false positives when it comes to detecting DNA in a patient.

Hansa Center has been so helpful in Charlie's road to recovery. We ended up going 3 times in the past year and a half and saw massive improvement after each visit, and many things "sticking". But there have been some bumps in the road still for him. Charlie is a complicated case since he went misdiagnosed and untreated for so long, that it is not surprising it would be a long process. Hansa’s homeopathies, tinctures and detox therapies have been key in getting his systems to naturally get back in line so his body could fight the fight. It was important to do this first so that his body could handle addressing the pathogen and metal loads.

Our main lead practitioner has been Nurse Andreanna Rainville up in the Seattle area all this time. She is nationally renowned in the Lyme community in treating children with Lyme/PANDAS. She was very supportive of Hansas treatment and continued to be involved during this time in many important aspects including additional treatment supports of tonsil removal, addressing pathogens, metals and LDA & LDI (Low Dose Antigen Therapy & Low Dose Immunotherapy). She had been seeing incredible results with many patients "symptoms" with LDA & LDI and felt Charlie was ready to embark. We started with the LDA’s for food and inhalants and LDI for yeast with much improvement in the spring/summer. Then it was time to layer in the strep specific LDI this past fall. And it was like a miracle - I had my son back! As a reminder, the PANDAS complication is an autoimmune reaction that when he would get strep it would attack his brain and cause encephalitis. Charlie had strep over 10 times in a year’s period, and each time he would have worsening extreme mental disturbances including anxiety, anger, depression, dark negative moods, OCD, Tics, to name a few, because of PANDAS. We likened it to as if he was possessed, as he was not anything like himself. He would still have these symptoms even after antibiotic treatment. Many parents of PANDAS children end up taking out their tonsils, continuous targeted antibiotics and then many have to go to IVIG. We did the two aforementioned. Upon having the tonsillectomy, the ENT found many pits in his tonsils that were harboring bacteria called stones. This was an important step in his recovery - to get the infections out that he was constantly swallowing, but Charlie continued to have encephalitis. He was also on a boat-load of targeted antibiotics in 2016 - with some help in his condition but he was still flaring with brain inflammation even after all that. I did not want to have to go to IVIG or psychotropic medications. This is where the strep LDI came in this past fall, and brought my son back to me. LDI is retraining the T reg cells to stop overreacting. And boy did it do it’s job! Here is a post I made to many of the Facebook Lyme/PANDAS groups I belong to, and that was picked up by Better Health Guy as a guest blogger: http://www.betterhealthguy.com/rooftops

We are now at the stage of addressing the pathogens more strongly, continue to strengthen his immune system (which is still not anywhere near it should be right now), repopulating his good bacteria, doing therapies to reestablish connections to the brain such as Vision Therapy and especially looking forward to adding in the Lyme LDI this year!

Charlie is handling the treatment so well with little if any side effects. We of course all the while are detoxing and assisting his liver, lymph and kidney drainage.

While donations are still being accepted, at this point I just leave this page up mainly for educational purposes and updates on Charlie - as we are so far deep in the debt hole. To get him to Hansa was a huge step in his recovery and a blessing from you all! Thank you all for the support (financial & emotional) you have given to bring us to this point!
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Update 2
Posted by Kayla Gabriel
16 months ago
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Happy Thanksgiving, everyone! This Thanksgiving, we give thanks to all of you for your support of Charlie!

Good news! Kelley was able to schedule Charlie and he is back from his first two weeks at Hansa and has already seen significant improvement. He's even transitioning into going back to school! The treatment they gave him has helped his immune system improve and really fight this lyme disease.

It's not over though – we still need your help. Please share his story. Or if you haven't given yet, please consider doing so. Your support now will help them pay for this initial treatment, as well as for his continued medicines. With your support, he'll also be able to return to Hansa for his follow-up appointments.

Again, thank you all so much!
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Update 1
Posted by Kayla Gabriel
17 months ago
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1
1
Charlie & Kelley are overwhelmed by your donations and encouragement. They wanted me to thank you from the bottom of their hearts for supporting and being a much needed bright spot in his life. This is truly making a difference as they begin to embark on his road to recovery which is being made possible by your thoughts, encouragement, love, prayers and philanthropy. Thank you! And please keep sharing his story! They need all the help they can get :)
Here's Charlie from a couple years ago
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Read a Previous Update
Kelley Hightower Siliven
17 months ago

Thank you all for inspiring and helping Charlie this week!

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$2,200 of $18k goal

Raised by 22 people in 17 months
Created October 11, 2015
Kayla Gabriel  
on behalf of Kelley Siliven
JS
$50
Jeneen Schloz
15 months ago
1
1

Charlie, I just know your mom is amazing & loves you to the moon and back! You sound like an awesome kid too! Sending healing vibes your way... :)

EG
$50
Erin G.
16 months ago
2
2
NN
$30
NILESH NARAYAN
16 months ago
1
1

All the best to Charlie.

SN
$100
sumi narayan
16 months ago
1
1

you are a very sweet &caring mum Kelley. Charlie is great & loving boy. I wish him all the best for his treatment!Best wishes,Sumi

$50
Anonymous
17 months ago
1
1
$25
Phil Melito
17 months ago
1
1

Keeping you in our thoughts and prayers Charlie!

MM
$200
Mary Pat Mueller
17 months ago
1
1

Here's to your complete healing Charlie!

$100
Anonymous
17 months ago
2
2
$75
Anonymous
17 months ago
2
2
KD
$100
Karen Daboub
17 months ago
1
1

We are thinking of you Charlie!! Keep strong, we are sending you lots of love and positive vibes! Xoxo

Kelley Hightower Siliven
17 months ago

Thank you all for inspiring and helping Charlie this week!

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