Dr. Levin announces his retirement.
For email inquiries:
July 23, 2008
Dear Dr. Levin:
The first time we met you Townsend knew that you were going to help him. He called you “The Thinker.” After years of pain and weakness and many, many doctors you were the first to really spend time and review his case. He is better.
Townsend’s endocrinologist looked over your work and called the insurance company for us and they are flying us to Pittsburgh, PA to a Fibromyalgia Clinic.
We always knew you had the knowledge to get him well and you helped us so much. We will never forget you. You have been the catalyst that got Townsend well. It was an honor to know you and work with you.
You are a brilliant physician!
Please tell your staff what a great job they have done. Thank you for all of your help. We always felt we were very taken care of and impressed by your office.
Thank you again,
The Hutchinson Family
Thank you so much for your efforts with our son Robbie. After he was first diagnosed as being on the autistic spectrum in October 2006, we started treating him with the gluten free casein free diet. We had remarkable success. We also began removing artificial colors and flavors with the Feingold Diet. We did all we could using natural methods in the DAN Protocol. We needed a chelation test for Mercury, allergy tests, vitamin tests and yeast testing. We had been to other doctors to try to explain that we believed in a natural method to recover from Autism. They did not understand what we wanted and we had to explain it to them. You did the proper testing to find out exactly what individual needs Robbie had and explained in great detail how and why these things needed to be done. We were happy that you tested Robbie with DMSA to rule out the need to use chelation for mercury removal. We are also seeing positive results with vitamin B-12 shots and yeast removal which were two things that Robbie needs to continue to improve.
Robbie hardly ever gets sick anymore since he has taken the vitamins prescribed under your care. You tested Robbie for Allergies for 125 different foods which can cause many autistic symptoms and uncovered some of the common foods we were still feeding him that were causing him problems.
Robbie has since become better able to concentrate in school and interact more normally with other children. In fact, we were quite happy when he was invited to his first “drop-off” birthday party and got along fine with the other kids without us having to attend to help him behave. Robbie is now spending some of his kindergarten day in the mainstreamed classroom which is such a relief to us. When he was first diagnosed, we did not know if that was even going to be possible. Thank you again for all your efforts on Robbie’s behalf. We look forward to continuing the partnership to see how far Robbie can go.
T.W. and C.W.
May 27, 2009
From: N. Phillips
Dear Dr. Levin:
I cannot say Thank You enough for the tremendous difference you have made in my life. In less than three (3) months time you have helped me to be resurrected from the dead!
I will be forever grateful that G_D led me to you because you are truly an angel who cares deeply about his patients and wants to see them well.
You are truly a blessing to all and I am eternally grateful! Thanks for just being you.
Dear Dr. Levin,
Thank you so much! I appreciate you for being one of the few Doctors that actually treat their patient’s cause of illness rather than mask symptoms. I have been ill for so long that I had forgotten how it felt to feel like a whole person. Until seeing you, I had seen several doctors that only wanted to put me on medications that never helped, in fact [these] only had negative side effects. You understand that a person needs to have certain labs done to actually find the cause of their illness.
Because of your understanding of this, we were able to uncover the real cause behind my illness for the first time and were able to address it. You also took the time to find out more of my history and habits where we could make positive changes in order for me to recover. I am finally on my way to good health and have never felt so great! I absolutely love your staff. They are very friendly and always eager to help with any questions that I might have.
Thanks again for giving me HOPE, which I had lost. I would highly recommend your services to anyone. You are truly an outstanding Doctor!
With great respect,
Patricia is doing FANTASTIC!!!!
Please, don’t forget to tell Dr. Levin. She is back playing piano and SWIMMING, thinking on which high school to attend and doing really well at school. What else can I say but THANK YOU Dr Levin! The treatment with T3 really worked wonders and she is a new child, or my old child before Lyme disease I would say. She has been really healthy since the treatment, she’s only got a minor cold this year and she hasn’t missed a single day of school. I know I promised you a letter and I’m working on it slowly but surely. I’m not forgetting.
I am just sending a Thank You note for Dr. Levin.
Tonight the hospital lab called to tell us that Braden had c.diff from a stool test and they wanted to make sure his physician knew because they were concerned about him getting treated as soon as possible.
I knew that I needed to call Dr. Levin because he is the one I trust with my kids more than anyone. I appreciate him picking up his phone after hours and listening to my concerns.
As a mom, it is comforting to know that he is only a phone call away to help. He does whatever he [can] to to make sure my kids are taken care of, and having him care for my kids is a gift.
Please tell Dr. Levin I appreciate his time and understanding for Braden.
21 February 2004
Dr. Levin, for your scrapbook - from a devoted patient.
I would like to take this opportunity to thank you, Dr. Levin, and your New York City staff, Dr. Luis Cruz, Grace and Jenny. Special thanks to your wife, Susan, for helping me get my life back on track. My husband, Keith, took me to visit you at your New York office at the end of January, 2002. I came with my husband, because I could hardly stand on my own. I wasn’t functioning well mentally, either; I felt half-dead. Probably looked it too. I was slowly coming apart.
Here is my story –
In August of 1999, I married my wonderful husband, Keith. At the time I resided in Houston, Texas. Keith lived and worked in New Jersey. Eventually I would resign my job and relocate to Jersey. That happened sooner than expected because my mom was diagnosed with aggressive lung cancer.
In September 1999, I moved to New Jersey. In February 2000 I lost my mom, in April 2000 I lost my best girlfriend to cancer – we were like sisters. She was 42-years-old. I was trying to cope with their passing and my “re-location to New Jersey,” and I was not doing well. I loved my husband and I would make it work.
In February 2001, I had a horseback-riding accident that broke my back. I broke everything but the spinal cord. Smashed the #12 vertebrae, 10 hours on the operating table, 2 months in the hospital. Drugs and more drugs (Oxycontin 3 times a day, and it was only one of the many drugs I was taking for over 6 months). I was a mess physically and mentally when I finally could come home. Please note, in Houston, I was a certified aerobics instructor as well as a personal fitness trainer and held down a full-time job in the business world.
By September of 2001, I was more sick than well. Always a problem, carrying too much weight, brittle hair, maybe the hormone pill I was taking was not right for me. I began to question everything about myself. I knew something was really wrong. I went to Houston, as I go every year, in December for my doctor check-ups. I saw my GYN man of 23 years and told him I wasn’t feeling “right” – I never felt really good or terrific, plus the weight gain, etc. He said with the move to New Jersey, etc., I might need a “psychiatrist”! He talked about growth hormones and a trial he would soon be conducting. He wanted me to participate. I declined, but he did give me Susan Levin’s phone number, because he thought she would convince me this would remedy my problems, which were getting worse by the day. I called Susan and spoke with her for over 45 minutes! She assured me I did not need a psychiatrist (a big relief to me), but I did need help. She gave me Dr. Levin’s NYC phone number and I made an appointment for the end of January 2002. The best thing I ever did.
If I had not “found” Dr. Levin, I really think I would have died a slow death. My system was so messed up by the hormones and drugs from the horse accident, my thyroid was barely working. I was so run down I could hardly walk; mentally I was in a real haze. Plus Dr. Levin discovered I had not only Lyme Disease but the secondary Lyme called Babesiosis as well. Keith would take me to NYC to see Dr. Levin because I was terrified to go alone. I was starting to fall apart mentally. That scared me too.
Dr. Levin through time, patience, various testing, tons of blood work, vitamins, minerals, and some medications has healed me both physically and mentally. He has corrected the deficiencies and balanced my system.
I still see Dr. Levin on an ongoing basis and am presently taking the membrane therapy injections. I truly believe this is a wonderful therapy and it appears to work for me.
I have had the opportunity over my lifetime to come in contact and visit with many different doctors. I can honestly state that Dr. Warren M. Levin is the very best of the best. He truly cares about his patients and he goes the “whole nine yards” for them. Thank you Dr. Levin for giving me back my life. It wasn’t always fun, but we got the results you wanted and as Keith used to say, “Honey, where did you go?” Now I answer “I am back!”
Thank you. You are a superb medical doctor. You are the best. Keith and I appreciate everything you have done for me.
A Letter from K Jacobs
My name is K. Jacobs. Over the last six years I have suffered from Lyme disease which has caused me memory loss, super-ventricular tachycardia, joint pain, swollen glands, and has weakened me. I have not been able to return to work. It short, Lyme Disease has simply robbed me of my life.
In my on going struggle with this disease is where I found comfort and hope, when I met Dr. Warren Levin. Dr. Levin is known as one of the foremost experts in the treatment of Lyme Disease as well as a pioneer in the field of integrative and alternative medicine. He is thorough and detail oriented and does not leave a stone unturned in his search for answers for his patients. However, to me he is so much more than that-he is a compassionate man who treats his patients as human beings rather than just medical cases.
I have spent many hours having treatment in his office, in New York watching him dance around, sitting next to his patients and bringing them hope like a medical life jacket . He brings each person safely home with kind words and lots of love. How often do you find such a doctor?
It is harder for me to see Dr. Levin now that his practice has moved to Virginia, from New York. However, Dr. Levin has continued to be my life line to getting better with his compassionate spirit and continuous search for answers. He is open to my ideas and suggestions and willing to try new approaches.
This is the strongest weapon the fight against Lyme Disease.
Thank you my friend.
New York City
April 10, 2007
Warren M. Levin, M.D.
407 Church Street, Suite E
Vienna, Virginia 22180
Dear Dr. Levin and Susan:
It is with a very grateful heart that I write to you to thank you for the care you provided to me when I was so sick with Lyme disease and Erlichiosis back in December of 2004. Although I still suffer from memory loss, the impression you made upon me, Susan, when I first called to schedule an appointment will never be forgotten. You showed interest in me as a person, a very sick person, and understood what I was going through. You scheduled an appointment for me to see Dr. Levin right away and helped me to understand the instructions given to me. Your ongoing compassion and concern for me during my treatment gave me hope to make it through the ordeal, and you were never too busy to return my calls and answer my questions.
My first appointment with you, Dr. Levin, was bittersweet. I had suspected that I had Lyme disease, and although I had been dissuaded from that self-diagnosis by a couple of other doctors, it was almost a moment of triumph when you proclaimed, “I clinically diagnose you with Lyme disease.” You spent nearly two hours with me, carefully taking notes and reading the history I had prepared for you. I appreciated that you explained the two different schools of thought on treatment. When I left your office and got in the car, I cried and cried, because I had known all along why I was sick, but when I heard your diagnosis, the seriousness of it hit me right between the eyes. That’s what made it bittersweet.
I could see the gears turning in your mind while you carefully planned testing and treatment, taking into consideration my financial situation at the time. I can still see you in my mind writing out the individual plan of supplements you wanted me to take to build my immune system to fight off the infection.
I remember telling you at one visit how I had fallen apart emotionally the night before. I was so upset that I couldn’t do things like I had before and you were so concerned that I had the support I needed to adjust to this new way of life. You told me, “Be grateful.” A short piece of advice, but it was long on value when applied on a daily basis.
I also recall thanking you after a few weeks for healing me, and you pointed to the sign above your office door. You said, “It is God that does the healing; I merely provide the tools.”
I know I have told you this before, but I cannot say it enough. When I came to you I could barely walk, think, remember, I couldn’t drive myself or find my way around, I was in excruciating pain, I couldn’t hold my head up because my neck was so painful and weak, drooling, losing my balance and a myriad of other terrible symptoms of Lyme disease and Erlichiosis. You validated my symptoms and didn’t send me away with only Ibuprofen. You gave me HOPE not rejection, as other doctors had.
Thank you for your warm compassion. Thank you for your knowledge and expertise. Thank you for your patience and understanding. Thank you, Dr. Levin, for saving my life!!
May God bless you and Susan for the work you are engaged in by helping sick patients find themselves again through adequate treatment and true caring. I wish you both the best and miss you very much. I wish you happiness and success in your new practice in Virginia.
Tina J. Garcia
Dear Dr. Levin,
It had been months yet feels like years since you began to work with me. I am devastated at your departure yet proud of you and comforted in the knowledge that you will be taking the next evolutionary step in your path of healing others. Peter and I will miss you and will be thinking of you, Susan and your family often. You are on to your next challenge and I know that you will conquer it like the master that you are. Wherever you are, people are so lucky to have you.
You know, it is not everyone that gets to make a difference in people’s lives (and in my opinion that is the truest test of human purpose) – a difference that counts. Changing people’s lives. That is what you did for me and anyone else that was lucky enough to have you touch their lives. You encouraged me, worked me past what I though possible, inspired me, gave of yourself, always made me laugh, had great style and stories (forgive my foolish indulgence, it had to be said!), and most importantly became a cherished ally in my fight. You looked past my illness and limitations and let me be myself. Priceless.
I just wanted you to know how you touched my life and to tell you that God smiled down on me when he sent me to you the man with the bluest eyes, the best sense of style, the sharpest mind, the thirst to help, the compassion to listen and care and the balls (SORRY) to take the harder road. I am so appreciative of your efforts and your passion. So, thank you Dr. Levin; an honor it has been.
In trying to give you something to honor you, I wanted to add an accessory to your repertoire. You deserve a Hermes, but for sentimental and symbolic reasons, I chose this SAVE THE CHILDREN tie. The artwork is done by a child with a history to overcome something I can relate to. His name is Todd and he is 12 years old. To me it symbolizes every child that will have the opportunity to grow up and create their artwork – their lives, their possibilities – because you intervened. These children, through your help can grow up, live, love, and change the world it is a truly beautiful and magical thought. Because you got involved.
I will check in on you from time to time and hope that you are healthy and happy. Stay well and walk in harmony and beauty. Shalom, my special, inspirational man.
[Original Diagnosis for this patient was ALS. In 2005, this patient was diagnosed with Lyme Induced ALS].
From K Clemons, in Appreciation
I want to begin by saying Dr. Levin that I truly appreciate and love your family and staff. You are angels giving me blessings that I’ve needed for decades.
I first met Dr. Levin in March 2007. Another physician I was seeing that day for latent lyme and other chronic infections felt I would receive better help if I saw Dr. Levin. (I have been sick since I was a young child and my symptoms have been progressive and worsening). Dr. Levin was not scheduled to see patients that day, but agreed to interrupt his day off to meet with me and my husband.
The first office visit was very gratifying. Dr. Levin had a working knowledge about my problems that surpassed what I was accustomed to seeing. He did not need me to explain to him why I am hypothyroid even with a constant low TSH. I had a physician in my home town that had failed to listen to me on that topic and even insisted upon removing my thyroid just 4 months prior to seeing Dr. Levin. The other physician would not listen to me when I explained that the pituitary gland was not releasing a proper amount of TSH in addition to other long standing problems).
To my surprise Dr. Levin even had state of the art testing equipment that could readily evaluate how much thyroid medication I needed. One of the most important things was that Dr. Levin did not belittle or fuss at or accuse me of fabricating the ocular pain and light sensitivity that I have had to endure and battle for decades. In addition an antibiotic I was on, at that first visit for Lyme disease was decreasing some CNS symptoms so that I could see more clearly and manage to stay awake for the office visit. Dr. Levin did not respond to this medication in a way that other physicians had. My hometown doctor went so far as to say it was just a placebo effect. Nor would he explain to me then why my other CNS symptoms were decreasing.
I received a thorough Physical Examination including an extensive medical history and a plan of action during my initial meeting with Dr. Levin which ran over 3 hours and did not include one word of negativity. I was treated with dignity and respect and my thoughts and ideas were welcomed by Dr. Levin. My first visit was like a breath of fresh air... very pleasant.
With each visit to Dr. Levin I have learned more about my diagnoses, received proper testing to investigate all of my symptoms and medical problems I was having especially with the infections I have lived with for decades! I have been given guidance and treatment plans to best fit my needs.
The visits I have are always pleasant because Dr. Levin is patient, listens well and does not rush a visit. Instead he ponders thoroughly what mode of action is best for each patient. He always comes up with ideas for problems. HE NEVER DISCREDITS THE PATIENT! He does not get upset if he gets behind, nor does he rush through the remaining patients so that nothing is accomplished.
His office is run in a comfortable and welcoming atmosphere. Patients feel loved, welcomed, and even get to talk with Dr. Levin’s family, including the family’s healing schnoodle, Paris. (By the way if you are allergic to pets, Paris does not shed, but you can always ask the staff and they will keep Paris right at the front desk. In addition, Paris is so gentle with the children that come to see Dr. Levin. She is a welcoming and calming influence in the office.
Another thing I have found gratifying is that Dr. Levin does not get upset if a patient calls with an urgent problem. That has certainly cropped up between visits. He actually seemed pleased that I called to tell him what was happening. He returns the calls, himself, to work with me to solve or lessen the new situation. He will even call his patients back, after a few days, to see how they are doing. I have hardly had any physician like this in my life.
I, as his patient, feel I can share my burden with him and I no longer feel I must suffer alone when a sudden new problem arises. I do not have to wait till the next visit to discuss these urgent issues with him. When necessary the staff, will even, schedule a phone consultation at the end of a long day for him.
Keeping up with the latest technology and research is time consuming and requires effort. Dr. Levin does not fail to try to keep up with the latest developments in his field. He is amazingly energized in searching out the latest knowledge, attending medical conferences for new data and staying up at night to research a condition on his patients. He does not park the patient’s problem in the file in his office, but perseveres often on his own time, at the end of a very long day to better assist not just my needs, but all of his patient needs.
Dr. Levin reminds me of a country doctor of years ago, who knew each patient well, and genuinely cared about each and every patient. In today’s world there are few doctors who adequately address their patient problems and challenges as he does. He never seems in a rush and covers the patient in totality rather than in stop gap measures. This type of physician is truly dedicated to helping others.
Dr. Levin has a great sense of humor and enjoys humorous and intellectual quotes, cartoons, on his walls in his office and he displays many of his favorite quotes and even makes them available for patients to take home. Using analogy, allegory and comparison as tools for teaching his patients allows him to get across vital points to his patients better than other means. Also, it lets us the patients know we have a doctor who cares enough to share gems of data and wisdom and even a good laugh. I always scour his bulletin board and data laid out for patients each time I visit so as not to miss out on something. I believe when a patient is not informed and taught as Dr. Levin is continually doing, then the outcome can never be what the patient and Dr. Levin wants it to be. He wants the best for each and every patient.
On one of my visits, Dr. Levin had a child with lyme disease and autism that was going to require a compounded medication. I was so delighted to see how thoroughly and completely he cared about this child to meticulously cover each ingredient of the RX that the child would receive. The culmination of Dr. Levin’s concern for this child was that he wanted to be sure the compounded RX even tasted good so that the child would be willing to take it. So, to my delight I heard him ask the Pharmacist to taste it, himself, so that the child would not refuse it. Most physicians do not go to that degree and then they leave their patients or the mothers to sort how the problem themselves. I believe too often the child ends up not getting that much needed medication and forms negative memories in their young minds of doctors and their medications.
I instantly noticed another wonderful attribute of Dr. Levin’s. The first time he saw me and wrote orders for tests to be down in my hometown, as I live many hours from the office, he wrote the words, "Please Perform" before writing the requested tests to do. Another time he took some time to personally write down the names of physicians for my daughter in her geographic area in New Mexico. He then mailed me the list along with a note with smile face printed on it. That little note gave me good cheer.
Because of the time Dr. Levin and his family took to help my daughter, she has been blessed with a physician equal in capacity and attributes to Dr. Levin. Also, that new found physician is also helping my son-in-law. The time that he took personally to do that note and the little smile on his pad, was the icing on the cake for me and for my daughter.
Sometimes my head is dense and I do not think well through my brain fog to the next step or comprehend what Dr. Levin is trying to explain to me. I am always met with patience and kindness by Dr. Levin and his staff, so I can understand what is next.
To summarize, I am very complex. That requires a dedicated physician who has the stamina to tackle my health problems and challenges which have been long standing. I also have a copious base of knowledge and resources for learning still more. Plus patient and love for others. Dr. Levin fits my needs. He has created an optimistic, helpful and supportive healing environment for me and other patients that are fortunate enough to have him as their doctor. Truly this is the way medicine ought to be practiced.
I have fervently prayed for the right physician for myself for many months prior to my being sent to Dr. Levin. I always feel prayers are heard and answered, and mine do get answered in due time. I knew that I was about to meet the physician that would help me, even before I knew of Dr. Levin’s existence. I knew this in my head and my heart. That doctor ended up being Dr. Levin. He is serving as my blessing and I pray for a blessing to others in need of his care.
K.Clemons, March 2008
I became aware that I was sick in September of 2007. I had L’Hermitte’s sign – an electrical buzzing sensation that intensified when I looked down. I found out later it was from loss of my myelin sheath at a particular spot on my back. when it first happened, I was convinced that I was feeling my vibrating cell phone. After a few months of thinking this was a structural problem (and going to a chiropractor who offered minimal relief), I began experiencing a prickling tingling sensation in my left hand starting with my index finger and moving all the way up my arm over the course of a few days in November. I then went to see a neurologist (Dr. C.in Chevy Chase, MD) who read my brain and cervical spine MRI’s and found 10 white matter lesions. She suggested I do a spinal tap. In December, I had a lumbar puncture (and a spinal headache which lasted 8 days) and most of the findings were normal except I had 6 oglioconal bands. Because of this, my symptoms, and the areas of inflammation on my MRI, Dr. C. diagnosed me with Multiple Sclerosis. She suggested I take oral prednisone and one of the immunomodulator drugs suggested for MS. I declined to take either.
At the end of December 2007, I sought a second opinion with Dr. P. of Naples, FL. He confirmed the MS diagnosis and suggested I do B12 shots, glutathione injections, a modified diet, his Brain Sustain supplement, and hyperbaric oxygen. I followed his protocol and did 20 hour-long treatments of hyperbaric oxygen. I went on a yeast- free candida diet as suggested by Ann Borochin from her book “Healing Multiple Sclerosis.” I felt better and better throughout the spring.
In May of 2008, I began to have a relapse and flare up of symptoms including more neuropathy and tingling in both hands, more buzzing and tingling in both legs, and skin sensitivity all over my abdomen. I did a few IV infusions of glutathione which didn’t really help. I did 15 more hyperbaric oxygen treatments again at 1.7 atmospheres, went back on the yeast- free diet and went to Dr. Warren Levin in Vienna, VA to begin chelation therapy.
Instead of starting with Chelation, he did a huge battery of tests including tests for Tick-bourne illnesses including Lyme. 6 weeks later, I came back with a positive Lyme test on the IGeneX Western Blot, specifically on band 31 which the CDC doesn’t look at for Lyme because there are so many false positives from the vaccine. I never received the vaccine and discovered that this band is 98% specific for individuals with late chronic neurological lyme.
I discovered that Lyme spirochetes can produce neurotoxins that dissolve myelin and can produce the exact same inflammatory effect in the central nervous system as is observed in MS. In addition, I realized that the joint pain and fatigue I’d experienced since I was a child could be attributed to Lyme as was my brain fog and even recent anxiety.
Before beginning treatment, I did another MRI which revealed I’d acquired one more lesion on my brain. (Looking back, I can see that I was probably first infected around age 10. I remember fatigue unusual for a child at my age and I have had joint pain in my knees and spinal structural problems for as long as I can remember. In addition, I had a flare-up of neurological problems in October of 2005 when I was very forgetful, anxious, and had facial tingling and numbness. My symptoms in 2005 were resolved by cranio-sacral adjustments as well as a yeast-free high-protein diet.)
Dr. Levin began treatment with oral antibiotics (minocycline), various immune-system supporters/regulators (vitamins, numerous supplements) as well as 4 grams of Rocephin taken intravenously 4 out of 7 days a week. I began this treatment on September 15, 2008 in addition to oral Minocycline and he later added another oral antibiotic (Tindamax).
I have noticed a dramatic improvement in my symptoms. On September 15, 2008, I was experiencing consistent pins and needles sensations in both hands, a buzzing/vibrating sensation in both legs when I flexed my neck forward (L’hermitte’s sign) and an intermittent tingling in the front of my thighs which I experienced about once a day. As of November 26, 2008, all distinctive prickling and buzzing sensations in my hands and legs are completely gone. I feel the best I’ve felt since September 2007 when my neurological symptoms appeared. I have increased mental clarity, almost no neuropathy (occasional L’Hermitte’s sign, 5% of what I felt a year ago), and almost no anxiety (except that my insurance company won’t cover my treatment because it is viewed as “experimental”).
I am so pleased to have found the cause of my neurological problems and to be treated. Dr. Levin plans to treat me for 4-6 months with this IV Rocephin pulse therapy. Hopefully by then I will be producing more of the CDC- recognized antibodies for Lyme and my CD57 levels will be normal again.
I can provide any documentation of my symptoms, diagnosis or treatment.
After 9 years of searching, my ghost has a name... not Fibromyalgia, not Chronic Fatigue.... BUT LYME DISEASE!
I had visited many clinics, hospitals and doctors' offices across the country in the 9 years of continual pain, suffering, and illness. Always hoping some alternative treatment, diet or medicine could be found to provide relief. My immune system was failing, and nothing was helping. It was becoming critical!
During a treatment at the Rothfeld Center in Arlington, I met Dr. Beth Galan who mentioned that her father- Dr. Warren Levin in Vienna, VA might be able to help me. I told myself this was the last doctor; no more running, no more hoping and trying new treatments. If Dr. Levin didn’t help I was prepared to live with the pain and sickness as there are many others living with far worse conditions.
I flew to Virginia to meet with Dr Levin. Wearily I went through my medical history. Dr Levin looked at my records and information and offered..."You have Lyme Disease."
I cannot tell you how many times I have been tested for this in the past.
He said “I will show you that you have Lyme disease!”
He ordered several antibiotics to be taken at one time for a week period. He collected specimens every day and sure enough, on the fourth day there was evidence of the Lyme virus!! I started treatments immediately.
After 4 weeks on the medication I was feeling a bit better. In December I slept through the night for the first time in years! Then one afternoon I was walking and I suddenly realized- I HAVE NO PAIN TODAY and all the fog and fuzziness lifted and there was this amazing clarity that I had not had in 10 years. I started to cry... I always had faith but this was more than I had ever hoped for.
I have had three months WITHOUT PAIN.... I cannot tell you what a great a blessing this is! This is the most amazing Christmas present I have ever received. My family and loved ones cannot believe the change! My youngest daughter had never seen her father not in pain. I smile every day when people that I work with and friends keep asking. “what happened to you... you have a new look, you are totally different?” I tell them this is what I used to look like. And I tell them how grateful I am to God for helping me find Dr. Levin and for the life he has given back to me. How can I ever repay this debt? I cannot describe how wonderful it is to have my life back.
My wife and children join me in sending you our love, heartfelt gratitude and appreciation,
March 31, 2010
Lyme Induced Illness in a Child
Konner had pretty bad allergies, but we suppressed those with the hookworm treatment. I think the Lyme exacerbated the allergies. We did not know about the Lyme when we first treated the allergies. So we did not realize that the problems were not allergy related. If anyone ever questions whether Lyme rage is “real” or not, I can tell them it is not only “real” it is a living hell.
I remember when he was small and he turned to me and said he hated going to school because he never knew where it (the sudden rage) was coming from. It made me sick to see that little face so sad and so confused. I was beyond frustration that I could not find an answer and help him. Six long, horrible years, his entire childhood gone, because no one could connect the dots. He started having awful pains in his legs when he was only 5. For years the doctor told me it was “growing pains”. What blather. Every single child with behavioral issues should be checked for Lyme. Period.
He is now calm, smart, and getting stronger every day. It is not easy and the road is long; but thank God we are now on the right road. Thank you all. I can only say that Dr. Levin was literally heaven sent. I had worn out my knees praying that someone would provide an answer for my child.
We are in Belize... Konner is responding well to the second round of antibiotics. He relapsed after ending the first round at about 4.5 months, at the end of last May. By October, things were pretty bad again. He is now into the second round, which we started in mid-December. It was not until March that he was able to attend school. He is now able to go every day (maybe missing one day a month), and is doing very well and loving it. He will end six months on the latest round and then the doctor here will switch to another combo for another six months. I tell everybody I know about Dr. Levin and his practice. My goal now is to write a book about this as a “novel”, but it will be, of course, the story of Konner. Dr. Levin will figure prominently in the book, and when the Hollywood moguls pick up the screen rights for it, I will insist that Robert Redford be cast as Dr. Levin....
In all seriousness, without Dr. Levin discovering the underlying illness that Konner has, I have no idea where we would be today. I cannot ever sufficiently convey the nightmare that was his life. It is bad enough that you have to battle this disease, but having to battle for the right to have basic medical care for it is an unspeakable wrong. We have never received a penny in reimbursement from Blue Cross Anthem for any of his treatments. We did get some help on his antibiotics, but were eventually sent a “questionnaire” as to why we were continuing him on antibiotics.
I threw it in the trash.
I hope all is well and that each of the ladies in the office had a lovely Mother’s Day.
Carolyn would be happy to speak with any Mom with questions or concerns. Call the office of Dr. Levin for her number in Belize.
My now 15 year old adopted son Nicholas had no physical symptoms of Lyme at all and had been tested for Lyme with a negative test result before one very brave doctor (thank you Dr Levin :-)) thought he might have Lyme and ordered new tests.
This happened after he had been in many, many different psychiatric hospitals here in the tri state area, and after the treating doctor at Four Winds Hospital had told me that he was the “worst case of pediatric bipolar” they had seen, and my son had progressed to the point that the director of the Foundation School, a highly specialized day school for severely autistic children told me they could no longer handle him at their school and that he would need to be institutionalized. And because he suffered very badly from violent Lyme rages I knew that meant a life time of physical and chemical restraints.
The first time we were in Dr Jones’ office he was very unsure if Nick really had Lyme because of the absence of physical symptoms. When Nick was in Hall Brooke Hospital, Brian Fallone’s wife examined Nick and did not think he had Lyme either.
But Nick did have Lyme and Babesiosis and Mycoplasma fermentas, and with many heartfelt thanks to all the wonderful doctors and health practitioners that have played a part in his recovery, my son is a very happy 15 year old living a normal life at home going to the local public school (who could have ever imagined that!!!) and has not had a Lyme rage in about 10 months (and he would have them every day, usually several times a day).
I wonder every day just how unusual Nick’s case really is and I am ever so greatful for every single day that he is able to just be a “normal” kid. I think he is unusual because he got diagnosed and treated, but how many of the children in those psychiatric wards suffers from Lyme?
Thank you everyone
Artist and Art Teacher
Mother to Nicholas, a wonderful 15 year old boy, diagnosed with PDD, Attachment disorder, Bipolar Disorder, Intermittent Explosive Disorder, ADHD, Learning Disabled, and a bunch of other labels, too many to remember :-)