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Chronic Lyme Patient Undergoes 'Treatment of Last Resort'

Michelle McKeon, of Ridgewood, went to Germany to seek treatment for the illness, which remains a disputed condition in the medical community

On a summer day in July 2006, Michelle McKeon was shopping in a grocery store in Fire Island when she felt her body shutting down. As she lost feeling in her extremities, she was unable to think or speak.

“Ever since that day, I never felt well again,” said McKeon, now 24.

She left her summer plans to work in an ice cream parlor with college friends behind and came home to Ridgewood, where she was diagnosed with a case of heat stroke.

But the symptoms never went away. Each day she felt like the room was spinning, and there was a constant pressure in her ears. Any temperature hotter than 75 degrees made her feel overwhelmed, and any bright light or loud noise gave her an instant migraine.  

“These aren’t symptoms people are used to hearing,” said McKeon, who went to 54 physicians over the next fours years, searching for the right diagnosis. Doctors told her she had everything ranging from chronic migraines to depression. Unable to function, she took the spring semester of her sophomore year at Marist College off, hoping to find an accurate diagnosis.

“I just figured that if you go to the best of the best doctors they’re going to figure out what’s wrong with your body…but there really was no answer,” she said.

What McKeon didn’t know was there might be an answer, but not an accurate test to find it. She and her doctors believe she suffers from Chronic Lyme Disease, a condition that is unrecognized by many doctors, as well as the Center for Disease Control (CDC) and the Infection Diseases Society of America (IDSA).

According to the CDC, patients who experience “lingering symptoms of fatigue, pain, or joint and muscle aches” after undergoing a two to four week course of antibiotics for Lyme are experiencing Post-treatment Lyme disease Syndrome (PTLDS).

“The exact cause of PTLDS is not yet known,” notes the CDC on its website, “There is no credible scientific evidence that PTLDS is caused by persistent infection.”

But the commonly used Elisa Screening test misses 35 percent of culture-proven Lyme disease, according to advocacy group the International Lyme and Associated Diseases Society (ILADS). ILADS contends it is indeed an active infection.

The two groups are engaged in a heated debate over the existence of Chronic Lyme Disease, which is made more complicated by the varied nature of the symptoms and inconsistent success of treatments.

In McKeon’s case, she tested negative and underwent a month of antibiotics anyway. They were ineffective, and she went on to other remedies.

Symptoms remain, but answers are nowhere to be found

Without a diagnosis, she returned to school, commuting to doctor appointments in between classes.

“I loved being at college, and I didn’t want to be home because I wasn’t getting any answers,” she said. She learned to never walk outside without sunglasses, not to drink alcohol, and to be wary of any potential bump from a friend that might send her depth perception reeling.

“When you say you have Lyme disease people don’t really take it seriously, so I kind of have to act like I’m okay, and I’m not. I’m really sick…and it’s really serious,” said McKeon.

Despite missing a semester, McKeon graduated in four years with a degree in Psychology/Special Education, and began teaching fifth grade at Highland Elementary School in Midland Park. But every day was a challenge, she said, and her symptoms worsened enough that she was forced to take a leave of absence.

McKeon devoted herself to researching her condition on her own time. She had already ruled Lyme out, but when she found accounts of stumped doctors and matching symptoms online, she was convinced.

Friends advocate for McKeon

“I just remember she called us one day and said ‘I know what I have,’” said Margaret Buttery, one of McKeon’s closest friends. McKeon sent samples off to IGeneX, a lab specializing in Lyme diagnosis in Palo Alto, California. When the results came back, she and other close friend Taylor LaForge threw McKeon a “Lyme party”.

“We had lime popsicles, we got her lima beans, lime colored everything,” said Buttery. “All of which turned out to be really bad for her,” finished LaForge. McKeon now has a restricted diet that eliminates foods that trigger a flair in her symptoms, including carbs, sugar and caffeine.

In the past year and a half since her diagnosis, McKeon has had blood clots from her IVs, picc lines (a type of IV that is threaded through the veins, straight into the heart) in her arm for months at a time, constant injections, extreme diet control, acupuncture, chelation therapy, and detoxification baths.

Her case is extremely unique. “Most people don’t have these many complications from Lyme,” she said. “I’m just extremely unlucky.”

Her mother, Cheryl McKeon, keeps folders for each year so she can record what their insurance does and does not pay for. Since Chronic Lyme is not officially recognized by the CDC or IDSA, it’s difficult to establish that every treatment is medically necessary to insurers, and Michelle does not qualify for disability.

“We’ve gone to the pharmacy and spent three, four, five thousand in a day. If it was two thousand then it was inexpensive,” said Cheryl McKeon.

Lyme, a family story

In 2010, her brother Joey McKeon was also diagnosed with Chronic Lyme Disease after being bedridden for a month.

Before getting sick, he describes himself as “arrogant and selfish,” unable to comprehend what was wrong with his sister. “I’d be like ‘She’ll get better, this isn’t my problem, the doctors will fix her,’” he said. “With Lyme, you need support from everyone, I didn’t understand that, now I appreciate it a lot more.”

“People look at you and think you’re totally fine…but inside you’re suffocating,” he said. “I don’t think I would’ve been able to get through this without my sister, I really just look up to her, because everything that she’s gone though has been so much worse than everything I’ve gone through.’

Michelle McKeon began seeing Lyme specialist Dr. Richard Horowitz in Hyde Park, New York. In December, McKeon learned that she has biofilms—an organized structure around the microbes which prevents antibiotics from working effectively. She also has a co-infection called Bartonella, which further complicates her condition.

“We’re kind of at a crossroads of how much more can her body take of the antibiotics,” said her mother, Cheryl.

Treatment 'of last resort'

Just over a month ago, McKeon learned about a clinic in Germany that performs special hyperthermia procedures which cannot be found in the U.S.

“This is what people do as their last resort,” she said. The cost of transportation, treatment, and post-treatment adds up to roughly $25,000.

Buttery and LaForge decided to create a website, sharing Michelle’s account of her symptoms in the hopes of raising funds as well as awareness.

“It’s been an outpouring,” said Cheryl McKeon. “With the battles and insurance companies, they have paid for things, you try not to be bitter…This kind of restores your faith.”

Global support network emerges

Donations have ranged from $10 to $5,000, with one unexpected payment coming from Lindawaty Halim, a woman LaForge met during a trip to Peru several years ago.

Halim’s father died at a time when her family did not have the funds for treatment. “She had the opportunity to help at this point,” said Laforge. “She said that this is really what money should be for.”

With about $20,000 raised, McKeon left on Feb. 18 for the Klinik St. George in Bad Aibling. Over ten days, she prepared her body for two hyperthermia sessions, in which her body was heated to 107 degrees while her head is kept cool. The hope is that the toxins will not survive the high temperatures.

McKeon, now back in the states after the hyperthermia treatments, said she's feeling a bit better. Major changes in symptoms aren't likely to be felt for about two months, she added.

The upcoming six months include a regimented post-treatment schedule of herbal medicines taken orally or injected. Other Lyme patients claim to have felt up to 70 percent better after four months of post-treatment and she remains optimistic she'll make progress. McKeon’s brother too hopes to go to Germany one day as well, once he can afford the cost.

“I don’t really know how I’m going to be feeling or what I’m going to be able to do. I just want to move on with my life,” said McKeon.

[Correction: Dr. Richard Horowitz was mistakenly identified as Dr. Robert Horowitz in an earlier version of this article.]

Winnie Dunn March 07, 2012 at 12:29 PM
Been there....it's a long, expensive, frustrating battle.
MaroonMom March 07, 2012 at 06:02 PM
My thoughts are with you Michelle!!! Be strong!
Flygrl March 07, 2012 at 06:55 PM
Thank you for sharing your difficult illness and your journey Michelle. I hope the new treatments help you.
Craig Hueneke March 07, 2012 at 08:57 PM
Michelle- First off.. the long hard fight is what makes winning the battle possible, so keep it up. The other day I was watching the Veria Living channel (FIOS channel 162) and they had a woman who had battled lyme disease for many years and found that, believe it or not, bee sting therapy had greatly helped her. I believe it was someone named Charles Marz that pioneered the use of "bee venom therapy" or "Apitherapy" and his son continues on his father's research up in Vermont or New Hampshire somewhere. Anyway...It's use has led to a great reduction of the pain associated with lyme disease, m.s. and arthritis. I Google'd it and came up with the American Apitherapy Society website. www.apitherapy.org Can't hurt to check it out. Good Luck & Keep Up the Fight! Craig Hueneke
Laura March 07, 2012 at 10:25 PM
Michelle, please get the book by Stephen Buhner, Healing Lyme. He is an herbalist and wrote a book with his lyme protocol. I felt better after one day of treatment.
Maureen March 08, 2012 at 01:01 AM
I feel your pain. I have battled chronic Lyme for over 15 years now. I too have Biofilm infection in my blood. I am on constant oral antibiotics and theMcDougal diet as these bugs live off of fat. I can not have more than 25 gms of fat daily. I eat lots of whole grains,fruits and veggies. I have a lot of painful sores on my body along with many other symptoms. I was misdiagnosed for over year and treated with IV Rochpin over a. 2 year period, I worked as a nurse for 37 years with y last 7 yrs in Hospice. I have no medical insurance as I am on disability and most of my income goes for medicine and doctors. I find ironic I took care of people all my life but cannot care for us self very well. I feel like time is soongoingto run out for me. I will keep you and your brother in my prayers. It helps to have a support system,something my family just can not Handel. Maureen
catherine March 08, 2012 at 11:10 AM
Thank you first of all for doing this article. We need to let the public know more of this epidemic that is even greater in number than Aids according to the experts. I too are suffering with this disease since last June. Since then in addition to taking medications for this, I have figured out certain other things I could do to alleviate my aches and pains...without it costing an arm and a leg. Michelle, try this...it might work for you too! I usually do sauna once a week, which helps to heat my body core temperature. They say that the Lyme Disease just hates this, and it helps to kill them off in a more natural manner, without drugs. You also lose a good deal of body water through sweat which acts as a natural detox. It has done miracles for me and each time I do it I feel better and better.
catherine March 08, 2012 at 11:16 AM
God bless you Maureen, my heart goes out to you also. How cruel that you are going through this , as a former caretaker, with no one to help you when you need it most. Please hang in there and keep up the good fight. We are rooting for you!
Irene March 08, 2012 at 07:52 PM
Thank you for this interesting and informative article - I wish you the best of luck in your treatment. The word "Bartonella" struck a cord with me because I just got a new kitten. Do you have a cat by any chance? Cats apparently are the main spreaders of this infection. Please refer to this article: http://manhattancats.com/Articles/truth_about_bartonella.htm
Joanne March 08, 2012 at 09:52 PM
Totally agree with the above comments. No need to leave the country for expensive, experimental treatments when the answers are here with the best of the best. The consumer who knows the importance of finding a board certified specialist has a better chance of better treatments. Good luck.
aaturner March 09, 2012 at 10:41 AM
Unfortunately this shows you know nothing about late stage lyme.... The IDSA will not acknowledge late stage lyme and will provide no further treatment. They leave us for dead.... I know you cant imagine this because you arent personally affected by it, you know what the CDC and IDSA write and you trust that. But if you ever get this horrible disease, youll know exactly why she had to leave the country.....
marc merullo April 03, 2012 at 02:35 AM
Do you recommend this clinic to other people with chronic lyme? How are their reviews? I will want to share any positive feedback for myself and other friends of mine with lyme .I hope you are feeling better or get better .if you wish to share experience email me I'm marc @ marcmerullo@gmail.com you can read my story on one of my articles Google Marc Merullo
Shelly September 08, 2012 at 06:57 PM
Hi Maureen, I am sorry that I am just getting back to you now. I was still very sick when I arrived home because of the toxic overload, and I wasn't able to respond to many messages until recently. It has been six months since I have been home and doing the detox post-treatment protocol, and I have noticed significant improvements. I still have a ways to go. However, this treatment has been more successful than anything else that I have tired. I am so sorry to hear that you are going through all of this, but I would be happy to speak with you if you have any further questions about my experience and the clinic :)
Shelly September 08, 2012 at 07:00 PM
Hi Laura, I went out and bought that book, when you posted on my wall. It has some really great protocols in it. Thank you, and I hope that you are doing well :)
Linda D January 27, 2013 at 04:39 PM
I would really like to know how you find out if you have biofilms. I an quite sure I have biofilms as I had an implanted medi-port removed last August and the infectious disease doctor specifically stated it was biofilm coated all the way to the tip. I was also diagnosed by Igenex in 2007. Unfortunately I was also born with fabry disease (reason for medi-port) and the fabry delayed the lyme diagnosis. Because fabry inhibits your ability to sweat I do not think I could do the treatments that you did in Germany or the sauna. I reallllly need to get to the bottom of biofilms though.
Amanda Conklin February 03, 2013 at 11:58 PM
Hi Michelle, my name is Amanda, age 25, and I too have had chronic lyme since 2010 along with the co-infection Ehrlichiosis, which took several doctors to figure out. While my case isn't nearly as bad as yours, I understand your pain, to a degree, and how alone you must feel in figuring this out. Just know that you aren't. There are many people out there who are contracting this disease and are making their voices heard. I have been on various antibiotics since 2011 that haven't worked. I have cried many tears about this, since I used to be a very active and happy person as well, but I know that we must stay positive. It is scary how little is known about this disease, when so many people actually are getting it. While sad and scary, this gives me hope that soon it will be better understood and researched. I wish you the best of luck on your journey back to health. Read the success stories and be confident that you will be back to your healthy self again - this always keeps me going on my worst of days. I wish you all the best.
Troy March 27, 2013 at 02:05 AM
What a great thing to find this info. I see myself in all of you who have been fighting this disease my story has been going for almost two years. May 2011 I seen the rash and commented to my wife. Becoming sick a month later. No one understands, you can't make them. I still get no understanding from my wife having improved three times from treatment but each time the symptoms come back after treatment. They are coming back again and the heat treatment sounds like my next a avenue. Lost my business all of my savings and a job all in the past two years. Will try the sauna thing if I can Thank you all for your comments and for understanding what I am going through
Shelly April 22, 2013 at 10:33 PM
Hi Linda, sorry for the delayed response, I just saw this message today. I m sorry to hear that you are dealing with Lyme disease. As for the biofilms, I was tested at Fry labs for the FL1953 bug. This bug is associated with biofilms. The information for the test I received is on this link, and it is test A: http://www.frylabs.com/forms/requisition_form1.pdf I hope that this helps!
Shelly April 22, 2013 at 10:37 PM
Hi Amanda, thank you so much for reaching out! I think that this is great advice. Since I have been back from the treatment in Germany, and from continuing the post treatment I have improved a lot. I still have a ways to go, but I am finally moving in the right directions, and finding treatments that my body is responding very well to. I hope that you are starting to feel better soon too!
Nichole May 15, 2013 at 07:00 AM
Hi all! I have to say reading this story is giving me hope for my mom who has been suffering this disease for 12 years, diagnosed and treated first 5 years ago. Recently stopped at the Lyme Disease Awareness rally in Green Bay, WI to get her into contact with others suffering the same wicked disease. She went from very active mom of 6 working full time to what I call the "referral ring" of one doc to the next. Tested positive with Igenex and failing treatments horribly. I as the eldest of the 6 am currently contemplating cashing out my pension at my job I started 11 years ago to get her somewhere for treatment. Looking into picking up a sauna this weekend. After reading this story and the comments about the Propolis i'm wondering how many of you have tried it? Her current ILAD doc says next treatment may be using the malaria med if still no improvements. I am at my knees here looking for ways to reach out and do what I can for her. Sister's wedding in FL next spring and hoping she'll be well enough to ride in the plane down there and back. Have tried researching the limited malvin foods that cause reaction, she's tried vitamin D and C with hurx reactions to the point where she can't urinate. Two weeks ago was off to the hospital with BP of 156/116. Too young to be going through this crap, and still has my little brother and sister at home with my step dad who can't seem to support her health path at all. Contacted envita in AZ, way too expensive. Help!
Shelly May 15, 2013 at 05:56 PM
Hi Nichole, I am so sorry to hear that your mom is suffering with this disease. If you are interested in finding out more information on hyperthermia treatment you can check out our website at http://lymeandcancerservices.com/. Our contact information is on the site, and I would be happy to help and tell you more about my experience. Your mom is lucky to have such a supportive daughter :)
dv June 04, 2013 at 07:46 AM
Check B 12 - Magnesium - Calcium - Heavy metals load levels. Add ozone - b-12 injections and selenium - chlorella with sauna - minerals Watch Dr.Rau & Dr Klinghardt also on youtube
dv June 04, 2013 at 07:54 AM
Our inner milieu has changed. You need to change to beat lyme. Lyme likes acid and protein rich, b12 low milieu.mercury, It hates ozone , heat, cats claw, b12, fishoils, vitC, water mineral not out house it still poison.
dv June 04, 2013 at 07:57 AM
http://www.o3medicalozone.com/ozone-clinics

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