Dr. Lesley Fein interview - Discovery Health

Dr. Lesley Ann Fein is a member of the Pennsylvania Lyme Society, and the Greater Hartford Lyme Disease Support and Action Group. via LymeBlog News and Personal Stories

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Kim

Lititz, PA

#1 Jul 25, 2007
I am so glad to see a story about Lyme Disease! I was suprised that on Mystery Diagnosis on TLC finally showed a patient with Lyme. No one every discusses it. It is like a secret disease that is from outer space that the government is trying to hide.When I watch that show, I always guess Lyme to be each mysterious case. I'm glad that I finally diagnosed the right patient with Lyme before they did. If only more doctors were as smart as me. LOL Thanks TLC.
Chris

San Diego, CA

#2 Jul 26, 2007
I would hope Dr. Fein would read this email. I served in Iraq and while in Iraq I began to have sharp pains in the heart area, shortness of breath, feeling of a swollen throat, sweatyness, ect... After seeing the doctor several times in Iraq and at home when I returned I received the same results, that I was fine. Maybe anxiety or its mental very similar to the Posluszy case. Now that I think about it I did train in the mountains of washington for a couple of months before going overseas and while overseas was continually bitten by sand flys and sand mosquitos being that I slept under the star for that time period. My question is, could I possibly have lyme disease? I dont have chronic fatigue. I hope to hear something. Thanks
Renee

Westport, CT

#3 Jul 26, 2007
I was glad to see the TLC special last night about Lyme. My husband has suffered with Lyme related symptoms for 3 years now. Always tested negative. After seeing his regular doctor, he was given 3 regiments of antibiotics just because the doc felt he was not joking about the pain and all. It seemed to help for the short while. Now he is has lasting effects of too much antibiotics. His intestines and stomach are destroyed. He has the heart palps, fever, joint pain, confusion, lethargy, headaches, you name it. The second infectious disease doc said he has classic lyme symptoms but can not get IV antibiotics because his test are neg. We are taking it day by day. Would love to hear about how others are handling this.
Annie

Menlo Park, CA

#4 Jul 26, 2007
7/26/07 - My Uncle John is at Stanford Medical in Palo Alto, CA. He has been hospitalized since early May and has now been in ICU for a week. His symptoms originally were that of a flu/cold (headache,high fever,extreme fatigue) coupled with loss of appetite, difficulty swallowing, jaw pain and blurred vision. We believe he may have been sick for months leading up to the hospitalization because he is a very hard working business owner and father of two young children, who never stops going even when sick. Since admitted his symptoms progressed and he has seizures, memory loss, tremors/jerks. He now has a feeding tube and is seriously deteriorating - the doctors are baffled. They have done blood tests, spinal taps, MRI's, cat scans, a brain biopsy (ruling out CJD). His brain is inflamed and white blood cell count is high in his spinal fluid. We need help, if there is anyone who can help please contact us at uncle.john@sbcglobal.net
Thank you.
Randy

Reedsburg, WI

#5 Jul 26, 2007
My wife has some type of problem. One day she was picking me up from having back surgery. Her hand and face then suddenly like locked up .We have been seeing alot of doctors but no one can say what happened. They say she has a auto immumied disease. We did the lymes test a couple times but negitive. Atime right before this eposode we notist a spot that i thought was ring worm. they ran the test it wasn't.They then thought it could be from to much ibuprofen. What do you think. 6klein6@charter.net
Adryan

Plano, TX

#6 Aug 4, 2007
Hi Renee,

I'm so sorry to hear about your husband. You must get your labs done by IgeneX lab in Palo Alto, California. They are the ONLY lab in the country that can test using better standards than just the CDC.(They look at DNA, etc). CDC Western Blot tests will almost always come out negative, especially if he has chronic Lyme (like me) and was NOT bit by a tick. You might already know about them. Best $200 I've ever spent- just to get an answer about what was wrong with me. My email is adryanoneil@comcast.net if you have any questions. I consider myself an expert on Lyme now! God bless, Adryan
STEVE - PHOENIX AZ

Richmond, CA

#7 Aug 7, 2007
I AM A 38 YEAR OLD FIREFIGHTER/PARAMEDIC WHO BECAME ILL THIS PAST JANUARY WITH A VARIETY OF SIGNS AND SYMPTOMS. I'VE BEEN A DIABETIC FOR 13 YEARS. MY SYMPTOMS THAT STARTED IN JANUARY ARE JOINT PAIN, RANDOM PAIN AND BURNING ALL OVER BODY INCLUDING MUSCLES AND JOINTS. STOMACH ACHE WITH THE FEELING OF BEING FULL WITH SMALL AMOUNT OF FOOD AND THE FEELING OF THE FOOD BACKING UP INTO MY THROAT JUST UNDER MY ADAMS APPLE. I FEEL WEAK AND TIRED ALL THE TIME AND HAVE TROUBLE SLEEPING. I HAVE A SORE THROAT A LOT AND SOME TROUBLE SWALLOWING AT TIMES. I LOST WEIGHT, APPROX. 15-20 LBS. I FEEL SOB SOMETIMES, AND ALSO HAVE FREQUENT ANXIETY ISSUES. SOMETIMES MY BACK WITH SWEAT FOR NO REASON. I'VE BEEN TO SEVERAL SPECIALISTS INCLUDING BEING SEEN BY THE FOLKS AT MAYO CLINIC. ALL MY TEST SO FAR HAVE BEEN NORMAL WOTH THE EXCEPTION OF MY ANA AND EOSINOPHILS WERE ELEVATED. I HAVE NEW ONSET OF SYMPTOMS THAT RECENTLY STARTED. THEY ARE NUMBNESS IN MY BOTTOM LIP AND TIP OF MY TONGUE, AND MY TASTE HAS CHANGED SOMEWHAT. NO ONE CAN SEEM TO DIAGNOSE WHAT'S WRONG WITH ME. I RECENTLY WAS GIVEN A ARTICLE BY A FELLOW FIREFIGHTER WRITTEN BY DR. FEIN ABOUT A 27 YEAR OLD MAN THAT WAS GOING THROUGH A SIMULAR SITUATION AS MY SELF, INCLUDING DOCTORS STATING THIS WAS ALL IN MY HEAD. I'M HOPING TO HEAR ANY INFORMATION THAT MIGHT HELP ME, INCLUDING HEARING FROM DR. FEIN IF IT IS POSSIBLE I HAVE THIS LYMES DISEASE. I ALSO DO WILDLAND FIREFIGHTING AND HAD A EPISODE WHERE I HAD WHAT DOCTORS THOUGHT WAS A IN-GROWN HAIR IN MY LEFT TEMPORAL REGION 2 SUMMERS AGO THAT HAD TO BE LANCED AND DRAINED. I DON'T KNOW IF THIS WAS A BITE OR NOT. PLEASE HELP ME IF YOU CAN. I AT MY END OF KNOWING WHERE TO TURN, AND I'M LIVING A NIGHTMARE. MY E-MAIL IS FIRE21@SBCGLOBAL.NET. THANK YOU FOR ANY HELP YOU CAN GIVE ME.
STEVE - PHOENIX AZ

Richmond, CA

#8 Aug 7, 2007
Chris wrote:
I would hope Dr. Fein would read this email. I served in Iraq and while in Iraq I began to have sharp pains in the heart area, shortness of breath, feeling of a swollen throat, sweatyness, ect... After seeing the doctor several times in Iraq and at home when I returned I received the same results, that I was fine. Maybe anxiety or its mental very similar to the Posluszy case. Now that I think about it I did train in the mountains of washington for a couple of months before going overseas and while overseas was continually bitten by sand flys and sand mosquitos being that I slept under the star for that time period. My question is, could I possibly have lyme disease? I dont have chronic fatigue. I hope to hear something. Thanks
CHRIS, MY NAME IS STEVE FROM PHOENIX. I JUST POSTED MY STORY AND SAW YOURS. I WAS WONDERING IF YOU HAD HEARD ANYTHING FROM DR. FEIN OR ANYBODY THAT WAS TRYING TO HELP YOU. I'M IN A SIMULAR SITUATION. MY E-MAIL IS FIRE21@SBCGLOBAL.NET , PLEASE WRITE ME IF YOU HAVE HAD ANY ADDITIONAL INFORMATION THAT MIGHT HELP YOU. THANK YOU VERY MUCH.
Jenn

AOL

#9 Aug 23, 2007
Chris wrote:
I would hope Dr. Fein would read this email. I served in Iraq and while in Iraq I began to have sharp pains in the heart area, shortness of breath, feeling of a swollen throat, sweatyness, ect... After seeing the doctor several times in Iraq and at home when I returned I received the same results, that I was fine. Maybe anxiety or its mental very similar to the Posluszy case. Now that I think about it I did train in the mountains of washington for a couple of months before going overseas and while overseas was continually bitten by sand flys and sand mosquitos being that I slept under the star for that time period. My question is, could I possibly have lyme disease? I dont have chronic fatigue. I hope to hear something. Thanks
CHRIS, YOIU NEED TO GO GET CHECKED FOR LYME ASAP!!!!! NO MATTER WHAT, ALL IT IS, A SIMPLE BLOOD TEST...UNLESS YOU LET IT GO TO FAR AND THEN IT MIGHT BECOME NUROLOGICAL!!!SO GO DPNT WAIT...WHAT WILL IT HURT??? NOTHING, I WAS SICK FOREVER AND EVERYONE KEPT TELLING ME NOTHING WAS WRONG WITH ME UNTIL I SAW DOUGS STORY! I HAVE BEEN ON ANTIBIOTICS NOW FOR 6 MONTHS AND STILL HAVE A WHILE TO GO BUT I AM FEELING GREAT!!! DONT WASTE ANYTIME :) HOPE YOU GET BETTER!!!!
Jenn

AOL

#10 Aug 23, 2007
Renee wrote:
I was glad to see the TLC special last night about Lyme. My husband has suffered with Lyme related symptoms for 3 years now. Always tested negative. After seeing his regular doctor, he was given 3 regiments of antibiotics just because the doc felt he was not joking about the pain and all. It seemed to help for the short while. Now he is has lasting effects of too much antibiotics. His intestines and stomach are destroyed. He has the heart palps, fever, joint pain, confusion, lethargy,
headaches, you name it. The second infectious disease doc said he has classic lyme symptoms but can not get IV antibiotics because his test are neg. We ae taking it day by day. Would love to hear about how others are handling this.
RENEE, I WOULD SUGGEST GETTING AN APPT. WITH A LYME DISEASE SPEC.! THEY ARE HARD TO COME BY AND DO NOT TAKE INSURANCE BUT IT IS WELL WORTH IT IF YOU WANT YOUR HUSBAND TO GET BETTER! THE SYMPTOMS THAT YOU LISTED ABOVE ARE NOT FROM THE MEDS.!!!!! TRUST ME,I HAVE BEEN ON A TON OF MEDS FOR 6 MONTHS NOW AND AM FEELING WONDERFUL!!! NTO ONLY DOES HE NED TO TAKE THE MEDS., BUT LOTS OF VITAMINS TOO!!! SEE A LYME DISEASE SPE. ASAP!! GET BETTER
Jenn

AOL

#11 Aug 23, 2007
Chris wrote:
I would hope Dr. Fein would read this email. I served in Iraq and while in Iraq I began to have sharp pains in the heart area, shortness of breath, feeling of a swollen throat, sweatyness, ect... After seeing the doctor several times in Iraq and at home when I returned I received the same results, that I was fine. Maybe anxiety or its mental very similar to the Posluszy case. Now that I think about it I did train in the mountains of washington for a couple of months before going overseas and while overseas was continually bitten by sand flys and sand mosquitos being that I slept under the star for that time period. My question is, could I possibly have lyme disease? I dont have chronic fatigue. I hope to hear something. Thanks
ANYONE NEEDING INFORMATION ON LYME MY E MAIL IS JENN021182@AOL.COM
Andrew

Ionia, MI

#12 Aug 25, 2007
Wow- After reading the posts here, and knowing a two friends that degenerated their ability to walk. I must let you know about something that rebuilt my immune system naturally. There is a huge stack of independent studies done at pub-med.gov let me know if you need assistance retrieving that information.

http://www.thehelpingfruit.com
http://www.coconutcash.info

Andrew
woodscrone

Baltimore, MD

#13 Aug 27, 2007
Kim wrote:
I am so glad to see a story about Lyme Disease! I was suprised that on Mystery Diagnosis on TLC finally showed a patient with Lyme. No one every discusses it. It is like a secret disease that is from outer space that the government is trying to hide.When I watch that show, I always guess Lyme to be each mysterious case. I'm glad that I finally diagnosed the right patient with Lyme before they did. If only more doctors were as smart as me. LOL Thanks TLC.
Where did you find an M.D. who would treat you? I finally wound up in PA for treatment.
woodscrone

Baltimore, MD

#14 Aug 27, 2007
Renee wrote:
I was glad to see the TLC special last night about Lyme. My husband has suffered with Lyme related symptoms for 3 years now. Always tested negative. After seeing his regular doctor, he was given 3 regiments of antibiotics just because the doc felt he was not joking about the pain and all. It seemed to help for the short while. Now he is has lasting effects of too much antibiotics. His intestines and stomach are destroyed. He has the heart palps, fever, joint pain, confusion, lethargy, headaches, you name it. The second infectious disease doc said he has classic lyme symptoms but can not get IV antibiotics because his test are neg. We are taking it day by day. Would love to hear about how others are handling this.
Get your husband to a good Gastroenterologist. I was treated by Dr. Trent Nichols in Hanover, PA. My Elisha tests were positive, but Western blot was not. However, with the testing he did at another lab I was positive. Treated for 6 months with antibiotics, probiotics to deal with the negative effects of antibiotics, Ultraflam, and Mediclear. All to counteract the negative aspects of antibiotics. This is the first summer since 2001 that I am free of symptoms. Prior to this treatment I had extreme pain. Ultimately had to have a hip replaced as it attacked my muscular skeletal parts of my body. Dr. Nichols also recommended an Dr. Aucort at Johns Hopkins if I ever needed assistance again. Don't give up. It can be treated by someone who will listen.
woodscrone

Baltimore, MD

#15 Aug 27, 2007
Annie wrote:
7/26/07 - My Uncle John is at Stanford Medical in Palo Alto, CA. He has been hospitalized since early May and has now been in ICU for a week. His symptoms originally were that of a flu/cold (headache,high fever,extreme fatigue) coupled with loss of appetite, difficulty swallowing, jaw pain and blurred vision. We believe he may have been sick for months leading up to the hospitalization because he is a very hard working business owner and father of two young children, who never stops going even when sick. Since admitted his symptoms progressed and he has seizures, memory loss, tremors/jerks. He now has a feeding tube and is seriously deteriorating - the doctors are baffled. They have done blood tests, spinal taps, MRI's, cat scans, a brain biopsy (ruling out CJD). His brain is inflamed and white blood cell count is high in his spinal fluid. We need help, if there is anyone who can help please contact us at uncle.john@sbcglobal.net
Thank you.
Try a Dr. Aucort at Johns Hopkins, Baltimore, MD. He was recommended to me by a Dr. Trent Nichols, Hanover, PA who treated me after many of the same symptoms you share. I had flu symptoms like nothing before, fatigue, involuntary jerking of my legs when I sat down, ultimately a hip replacement as it attacked my muscular skeletal structure. Check out Igenex website for Lyme's Literate M.D.s. As I understand it the current Elisha and Western Blot tests are only 45% accurate. I don't call that a test that should be used for ANYTHING.
woodscrone

Baltimore, MD

#16 Aug 27, 2007
Randy wrote:
My wife has some type of problem. One day she was picking me up from having back surgery. Her hand and face then suddenly like locked up .We have been seeing alot of doctors but no one can say what happened. They say she has a auto immumied disease. We did the lymes test a couple times but negitive. Atime right before this eposode we notist a spot that i thought was ring worm. they ran the test it wasn't.They then thought it could be from to much ibuprofen. What do you think. 6klein6@charter.net
Did you know that the Elisha and Western Blot tests given for Lymes are only 45% accurate. Find a Lyme's Literate M.D. who will use other labs for testing. Go online to the Igenex website. I lost a hip to Lyme's. Finally found an M.D. who treated me for 6 months with antibiotics plus added supplements to deal with negative effects antibiotics. This has been my best summer since 2001.
Joy

Waverly, NE

#17 Sep 29, 2007
Short version- Daughter been very ill for 10 years. Lost gallbladder in 3rd grade now a senior in high school. Severe nausea, abdominal pain, throwing up. Every test done. Seen over 20 doctors. When she first got sick she had been in woods and broke out in small reds dots on face and then escalated into full blown rash. Few months later she had major joint swelling. At same time, severe stomach pain and nausea. Tested for Lyme and Juvenile arthritis-negative. Continued to have some some rash over the next few months. Finally settled down to just stomah pain and nausea. Tested gallbladder a year latet and wasn't empyting properly. took it out. Pain stopped but nauses became debilitating. She has been on homebound at school for years. Just found out that she may have gastroparesis(paralyzation of stomach muscles). Has taken the meds previously and didn't respond. Over the 10 yrs she has tested postive for food allergies, chronic candida(yeast in digestive tract) and small bacterial overgrowth. Followed all protocol. Got rid of allergies, yeast infection. Still so sick.Within last year started with severe epigastric pain and throwing up. I have read that Lyme can attack the gastro tract. Anyone experience this. Note- she was bit by a tick when she was younger probably around 5 or 6 year old. However problems started when she was 9. We are desperate for help. One of her doctors suspects lyme eventhough test was neg back at age of 9. we are retesting using the CD 57(think this was the name. Help!!!!!!!!!!
Jackie

Lyndhurst, NJ

#18 Oct 8, 2007
To all who are looking for help with Lyme questions/diagnoses,

Check out these resources--

For doctor referrals - lymediseaseassociation dot org
click "doctor referrals" near top of page

For Lyme support groups - lymenet dot org, click "support groups".
Lymenet also has chat boards for medical questions - click "flash discussion". Other patients are a great resource for information. So many of us were misdiagnosed for years. There is alot of support available.

A great downloadable booklet on Lyme is available here:
lymepa dot org -- look for green booklet - "Lyme: the Basics" plain language guide to Lyme and tick borne diseases.

Also, you can look on wikipedia dot org online encyclopedia - search on "lyme disease" and "lyme disease controversy".

You can easily test negative and yet have Lyme disease. You can have otherwise great doctors at top hospitals tell you you don't have it, when you really do. It happened to me and thousands of others. I had repeated negative tests and went undiagnosed for years. It was horrible. Finally I found accurate info on lymenet, lyme disease association, and ilads dot org and went to a doctor that follows the ILADS diagnosis/treatment guidelines. Now I have my life back.

Good luck everyone
Megan

United States

#19 Nov 4, 2007
I was treated for lymes disease approximately 2 month ago and things have just got worse since. They started me on Amoxicillian and then Doxycycline. I had approximately 5-6 weeks of Doxycycline when I started to have chest pain and heart palps so they then decided to take me off of the antibiotic for fear that I was having some side effects. I was off of the medicine for 3 days when my heart beat seemed to be irregular so I went to the emergency room. They did blood tests, chest xrays, and put me on a heart monitor and said everything looked great and sent me home. I'm starting to get really scared because everyone seems to have no clue what they are dealing with including the specialist. Today which is the day after I went to the ER my chest hurts even more than it did yesterday and the pressure is worse also. If anyone has any advice or suggestions or info that will point me in the right direction please let me know asap! Thanks!!
anon

AOL

#20 Nov 13, 2007
Joy wrote:
Short version- Daughter been very ill for 10 years. Lost gallbladder in 3rd grade now a senior in high school. Severe nausea, abdominal pain, throwing up. Every test done. Seen over 20 doctors. When she first got sick she had been in woods and broke out in small reds dots on face and then escalated into full blown rash. Few months later she had major joint swelling. At same time, severe stomach pain and nausea. Tested for Lyme and Juvenile arthritis-negative. Continued to have some some rash over the next few months. Finally settled down to just stomah pain and nausea. Tested gallbladder a year latet and wasn't empyting properly. took it out. Pain stopped but nauses became debilitating. She has been on homebound at school for years. Just found out that she may have gastroparesis(paralyzation of stomach muscles). Has taken the meds previously and didn't respond. Over the 10 yrs she has tested postive for food allergies, chronic candida(yeast in digestive tract) and small bacterial overgrowth. Followed all protocol. Got rid of allergies, yeast infection. Still so sick.Within last year started with severe epigastric pain and throwing up. I have read that Lyme can attack the gastro tract. Anyone experience this. Note- she was bit by a tick when she was younger probably around 5 or 6 year old. However problems started when she was 9. We are desperate for help. One of her doctors suspects lyme eventhough test was neg back at age of 9. we are retesting using the CD 57(think this was the name. Help!!!!!!!!!!
Have your gastroenterologist test your daughter for a sphincter of odi dysfunction.

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