Doctor In Trouble for Lyme Disease Tr...

Doctor In Trouble for Lyme Disease Treatment

There are 70 comments on the WITN story from Jun 16, 2006, titled Doctor In Trouble for Lyme Disease Treatment. In it, WITN reports that:

The latest battle in the Lyme Disease struggle is being waged in North Carolina.

Join the discussion below, or Read more at WITN.

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Wendy Harrell

Waveland, MS

#1 Jun 17, 2006
As a patient of Dr. Jemsek, I am very upset that the board found any error at all on his part. He is a kind, generous, man whose integrity has been tarnished by doctors who sit in judgement when they do not understand an illness as evil as lyme. Medical school has not presented the treatment of anything as difficult to diagnose and treat as the lyme bacteria. I am afraid that we all will see more of this devastating post lyme syndrome unless doctors know to treat and diagnose quickly.

I work for a doctor who didn't know how to treat lyme and sent me to Jemsek so I could get help. I had been diagnoses 3 years ago with rheumatoid arthritis. When I took antibiotics for a sinus infection, I had a terrible arthritis flare and the doctor I worked for suggested I do a western blot test for lyme. At the time, I thought I was lucky that the test came back positive (even according to CDC standards). I had something to fight, rather than accept the joint destruction that rheuamtoid arthritis can bring.

After seeing Dr. Jemsek, a pick line and a month's worth of IV antibiotics-which is all that my insurance company would pay for, I still have severe joint pain, but many of the other symptoms have gotten better for now, such as "brain fog", extreme fatigue, headaches and memory loss.

I am angry that the first doctor I went to-my family doctor- with my rash and migrating joint pain 3 years ago, then the rheumatologist who tested every possible thing you might be able to test- DID NOT even think about LYME. Now, I don't know what my future holds-more lyme symptoms? Or JUST rheumatoid arthritis?

Believe it or not, my current rheumatologist calls my post lyme problems "cronic fatigue and fibromyalgia" along with rheumatoid arthritis and will not accept the possibility that it is lyme. He says that since I took antibiotics, the lyme is gone.

I think every day about the poor people ho have all of the symptoms of lyme and continue to test negative. They do not get the treatment they need in time to stop the invasion of this nasty little bacteria that is so hard to get rid of.

Wendy
lee

Gainesville, FL

#2 Jun 19, 2006
You are not alone. For the longest time I felt alone. I am a senior citizen with numerous germs in my body. My wife is a stroke survivor. It is a struggle to maintain my sanity. Also, I am a US military veteran. It is very difficult to get the proper help any where I go.I have accepted that I must do everything I can to care for myself. Therefore, I have found that food supplements, herbs, homeopathics and first of all faith in God who has opened my eyes to the truth. Locate a local herb shop which sells Natures Sunshine Products by looking in the yellow pages under various headings and then call them and let your heart lead you.
annie

United States

#3 Jul 6, 2006
I would like to know why after more than four years, the physicians that misdiagnosed, and the one that REFUSED to treat my son's Lyme Disease because "Lyme is not in North Carolina" (even after a positive western blot by CDC standards) are not on trial!!??
Lee

AOL

#4 Jul 12, 2006
well-I am going through all this- lived on LI for many years- neg lyme test but all the symptoms- after a spinal.MRI ect for ms- no one in NC will touch me for lyme- they are ignorant- although I am a native- I know if it is out of the box- no one will touch it-my brain is in a fog-I have tremors/numbness-and the list goes on- for 43 three years I have been very productive person- kids-sports but now I tread to roll out of bed-if anyone knows where in the UIS I can go for treatment let me know- I will fly anywhere-once I get treatment I will go after the drs that ignored my symptoms-and the people on the medical board need to do a camping trip to LI, get bitten and go through what I and many ohter persons suffering with LYme-
lori lawhead

United States

#5 Jul 16, 2006
I agree with annie! I feel that all of the ignorant doctors should be sued and licenses take away and the ones that are willing to help us? leave them alone!!!!!!!!!!
Ticnic Statesville NC

Auburn, AL

#6 Jul 28, 2006
It took me almost nine years to get diagnosed. The first doctor told me that "if I wasn't the south, he'd think that I had Lyme disease! He didn't even test for it because IT IS NOT IN THE SOUTH! They referred me to a Rheumatologist who gave me a possible diagnosis of Lupus, then Mixed Connective Tissue Disease, then several years later, Rheumatoid Arthritis (but I do not have the RA Titer!)It is a clinical diagnosis based on severe inflammation of the joints as seen on an MRI an X-Rays.I have taken every RA medication possible and nothing helped. When 18 months of Remicade didn't work and I was continually getting worse with a tremor, numbness, migraines,brain fog, memory problems, etc. I decided it was time for me to get help. My Doctor was convinced that I had M.S. but I wasn't. I had done my home work and I didn't fit the "normal symptoms" I did however fit the symptoms for lyme! He tested me and said that I was negative (of course). He insisted that I be referred to a well known MS specialist in Winston Salem, NC. I decided to seek out Dr. Jemsek on my own. Thank God I did.
I have never had a Dr. Give me a more thourough exam ever. For the first time in years I felt validated, not crazy. He actualy confirmed that I was indeed very sick and that it probably was late stage chronic Lyme. The tests were positive from IgenX with 2 co-infections as well. I started my pic-line in Jan. 05 and ended in Oct. 05. I've had a hard time maintaining any stability off the orals and he tells me that this may be as good as it gets. If it is, thats ok, I'm better than when I first got to him. I was completely disfunctional. I felt helpless. I've learned to pace myself and rest, rest, rest. Maybe We should all file civil suits against all the doctors who wrongfully diagnosed us for all those years. I sure would not be in the shape I'm in if the first Doctor had not been ignorant that ticks don't seem to know when they cross state lines!Jemsek is a Godsend to me and I'm thankful he has the guts to be a doctor instead of a medical puppet.
John

London, UK

#7 Aug 4, 2006
That would be great, just sue all the doctors who misdiagnose us. Could you imagine how much it would cost? I guess that might be the only way to get Lyme disease considered more frequently.
ken

AOL

#8 Sep 13, 2006
I have some questions. I " had" bad lmme disease over a decade ago, and was treated with IV. I was then told that the lyme disease went away, but left me with RA. I have spent the last decade being treated for RA with little success.
Today my rheumatoligist called me in, and told me I had some sort of troubling postiives on multiple lyme tests. He sent me for more tests and xrays.
Do I have lyme or RA...
HARKEY - ALBEMARLE NC

Concord, NC

#9 Sep 25, 2006
I too wonder how the board could ever doubt Dr. Jemsek and his clinic. When I first went to him I could not even tell you my sons names, follow directions or at times even get words out of my mouth correctly. My belief in life is "WHAT GOES AROUND DOES COME AROUND" sooner or later. I will march, stand on the capitols steps whatever to promote Dr. Jemsek and to promote this disease. It has taken away a part of my life that I can never get back. I have some good days and I grap those good days but I have been left with brains dysfunctions. I also am grateful for Dr. Hill the neuro in Salisbury who knew who to send me to. Yes, as the rest of you.... oh, it is lupus, no ..ms, no fibro...no arthritis..no chronic fatigue. Let someone in the government get this dreadful disease, or the the insurance company and I am sure we would see a change.
Barb J

Hatfield, PA

#10 Oct 9, 2006
I guess that I am lucky. I have had severe headaches for 21 years. I was put on migraine medicine and the headaches seem to subside. Recently, they became worse so I went to a new doctor, since my old one had retired. He sent me for an MRI. One of the things that this showed was white spots on my brain. They can be from Lupus, Lyme disease, MS, migraines. After this came back, my doctor did a blood test for Lupus and Lyme. It came back positive for Lyme. He has immediatly put me on antibiotics for a month. If after a month, it is still positive, he will put me on IV's for a month. He has also said that these are old antibodies, not new ones. When I saw symptoms of Lyme, I could not believe that I had so many. Brain fog and searching for words, extreme fatigue and headaches! My question is this, if I have had this for awhile, what can I expect in regard to my symptoms and my health? Any replies would be greatly appreciated.
TexasLyme

Pearsall, TX

#11 Sep 2, 2007
If you are open to alternative medicine you should check out Dr Hines Hope Clinic ( http://www.drhines.net/ ). He has suffered from the disease himself and has treated many people including myself.
Lee wrote:
well-I am going through all this- lived on LI for many years- neg lyme test but all the symptoms- after a spinal.MRI ect for ms- no one in NC will touch me for lyme- they are ignorant- although I am a native- I know if it is out of the box- no one will touch it-my brain is in a fog-I have tremors/numbness-and the list goes on- for 43 three years I have been very productive person- kids-sports but now I tread to roll out of bed-if anyone knows where in the UIS I can go for treatment let me know- I will fly anywhere-once I get treatment I will go after the drs that ignored my symptoms-and the people on the medical board need to do a camping trip to LI, get bitten and go through what I and many ohter persons suffering with LYme-
Robby

Italy

#12 Sep 3, 2007
I take many informations here in Italy about Lyme disease and i found so hard to knows the truth! The only sure thing is the tick disease it's so difficult to diagnose. Some doctors sayd even if you take antibiotic and the syntoms seems gone the sickness could come back again. The infection could stay inside your body and explode few years later. But don't take my words so sure because that's only what i found searching around and most all the time doctors say different things about that kind of disease. Where's the real truth? But it's so hard to judge a doctor and i don't want to do it for what he did. Sometimes the medical system to cure a sickness looks like a Bible...one book and many different way to interpretations.
Mark

White House, TN

#13 Sep 12, 2007
I'm considering treatment, but found that an initial consultation costs $700, and then treatment is $300 PER DAY. How can anyone afford the treatment? What if it is needed for years?

I guess I'll just have to give up an die.

Since: Sep 07

St Joseph MO

#14 Sep 13, 2007
Asking for opinions. Should I get an evalution to see if I have Chronic Lyme?

I got bit by a tick 5 years ago. I had the bullseye rash and all the horrid flu like symptoms. My GP put me on two weeks of Prednizone and Antibiotics. I don't remember which Antibiotic, I am allergic to Cipro so I know it wasn't that. For about two weeks I wanted to die. I got better and I think I did pretty good for about a year. Sinse then I have been diagnosed by the same docor as having: Angina, Depression, Irratable Bowel Syndrome, Hemoroids, Migrains, Allergies, numerous Sinus Infections, Acid Reflux, Renal Reflux, and Constant Kidney and Bladder Infections. About three months ago I started getting seizures in my face and eyes. It starts with a quick sharp pain in my eye that feels like someone is poking me in the eye with a hot ice pick. Then I get a dull but very painfull headache, my tongue, most the time but not always, goes numb on the right side which slurs my speach and makes it impossible to say certain words. Then my thought processes get really foggy and my short term memory goes in the toilet. My body aches all the time. My energy level is below zero. I have started shaking, sometimes, to the point where I will not use a glass or cup without a secure lid because I keep knocking them over. I am currently on medication for: Acid Reflux(Prilosec), Depression(Welbutrin), Irratable Bowel Syndrome(Levisan, Anti-Seizure meds for the face thing(Nurontin),and assorted OTC pain relivers for the chronic muscle and joint aches. The last two weeks have had a new development of pain that starts in my chest, goes to my jaw and down my left arm. I thought I was having a heart attack but my heart seems fine and it always goes away after 20 minutes or so. My GP told me last week that my problems couldn't by Lyme cause we caught and dealt with it 5 years ago.

Some one help me please. I feel like my freinds and family think I am some kind of hypochrondriac or something. Is there some one you would recomend that could diagnose correctly(one way or the other)? I am getting worried about being able to keep my job as a computer programmer as this thing seems to be getting worse. I play drums have trouble staying focused on what I am playing. I am getting scared of riding my motorcycle for fear I will have one of these face things and have a wreck.

Can anyone help?
Bridget

Naperville, IL

#15 Sep 20, 2007
I live in Michigan and I really think my mother has Lyme Disease. Every symptom fits, but she's had the test and it was negative. All her symptoms started after a bug bite to the ankle---it has been almost one year and no one can seem to figure out what is wrong. they've sent her to bone doctors, claimed she had been bitten directly on the vein and some sort of bacteria had entered that they weren't aware of, etc. I REALLY want her to go to a dr. that specializes in Lyme Disease, and have convinced her to go as well, I just don't know where to start and I want to make sure she gets a good doctor. She lives in the Saginaw Bay area of MI and would like a dr. in Saginaw if possible. Can anyone help with a referral? I just want her to get better :(
Ann

AOL

#16 Sep 21, 2007
Bridget, look up the Michigan Lyme Disease Association website and call to find a doctor in your area who treats Lyme disease.
Best to your Mom
Jordan

Malverne, NY

#18 Sep 24, 2007
I suggest repeating the Lyme Tests Again at Igenex. It's a little on the expensive side but its definitely worth every penny. Also ask them to test for all the coinfections.

Then you need to visit a Lyme Disease Literate Doctor check llads.org . You need antibiotic asap.

Lyme does not go away and if you have a coinfection then this would have made it even more difficult to treat...If you start taking antibiotic and you start feeling worse than you have a confirmation that you are experiencing A herxheimer reaction if you don't means no lyme... ANTIBIOTIC WITHOUT LYME WOULD BE LIKE TAKING M&M's.

Hang in there stay strong and don't give up...
TominKC wrote:
Asking for opinions. Should I get an evalution to see if I have Chronic Lyme?
I got bit by a tick 5 years ago. I had the bullseye rash and all the horrid flu like symptoms. My GP put me on two weeks of Prednizone and Antibiotics. I don't remember which Antibiotic, I am allergic to Cipro so I know it wasn't that. For about two weeks I wanted to die. I got better and I think I did pretty good for about a year. Sinse then I have been diagnosed by the same docor as having: Angina, Depression, Irratable Bowel Syndrome, Hemoroids, Migrains, Allergies, numerous Sinus Infections, Acid Reflux, Renal Reflux, and Constant Kidney and Bladder Infections. About three months ago I started getting seizures in my face and eyes. It starts with a quick sharp pain in my eye that feels like someone is poking me in the eye with a hot ice pick. Then I get a dull but very painfull headache, my tongue, most the time but not always, goes numb on the right side which slurs my speach and makes it impossible to say certain words. Then my thought processes get really foggy and my short term memory goes in the toilet. My body aches all the time. My energy level is below zero. I have started shaking, sometimes, to the point where I will not use a glass or cup without a secure lid because I keep knocking them over. I am currently on medication for: Acid Reflux(Prilosec), Depression(Welbutrin), Irratable Bowel Syndrome(Levisan, Anti-Seizure meds for the face thing(Nurontin),and assorted OTC pain relivers for the chronic muscle and joint aches. The last two weeks have had a new development of pain that starts in my chest, goes to my jaw and down my left arm. I thought I was having a heart attack but my heart seems fine and it always goes away after 20 minutes or so. My GP told me last week that my problems couldn't by Lyme cause we caught and dealt with it 5 years ago.
Some one help me please. I feel like my freinds and family think I am some kind of hypochrondriac or something. Is there some one you would recomend that could diagnose correctly(one way or the other)? I am getting worried about being able to keep my job as a computer programmer as this thing seems to be getting worse. I play drums have trouble staying focused on what I am playing. I am getting scared of riding my motorcycle for fear I will have one of these face things and have a wreck.
Can anyone help?
VA citizen

AOL

#19 Sep 30, 2007
without Dr. Jemsek my niece would not be alive and working as a nurse nor would her baby have been born a few months ago.
Dr. Jemsek is literally a life saver. He not only saved her life, he gave her quality of life.

These doctors judging Dr. Jemsek have offered no viable alternatives or solutions, only their condemnations. That is not good medicine, that is only politics.

God Bless and protect Dr. Jemsek those patients that he serves.
TAXPAYERS PARTY

United States

#20 Oct 4, 2007
MY DAUGHTER SUFFERS WITH LYMES FOR 10 YRS. MOST DOCTORS ARE EGOMANIACS AND COULD CARE LESS. SHE
GOT THE SHAFT FROM THE BEST EXPERTS IN THE COUNTRY. WHAT IN THE HELL IS WRONG WITH THESE DOCTORS. THEY GOT THEIR HEADS UP THEIR ASSES. SHE
IS FINALLY SEEING A DR. IN CHADDSFORD PA WHO WILL
PUT HER ON A PICK LINE AND POST TREAT HER. WITH THE HELP OF GOD MAY SHE GET BETTER. IT HAS BEEN
10 YRS. OF MIS DIAGNOSIS AND UTTER PAIN. WE NEED TO CONTACT OUR CONGRESSMAN (AND THEIR WORTH LESS THAN DOCTORS) TO TRY TO BRING THE RESEARCH FOR A CURE TO FOREFRONT. THERE IS A BILL IN CONGRESS,BUT YOU KNOW HOW THAT GOES. WE CAN PUT UP WILL ILLEGALS/NAFTA HIGHWAYS/PORKBARREL SPENDING, BUT THIS DISEASE WILL AFFECT EVERY FAMILY IN THE NEXT 15 YRS. IT IS TRULY AN UNREPORTED EPEDEMIC.
Betty Schramm

New Hope, PA

#21 Oct 11, 2007
Wendy Harrell wrote:
As a patient of Dr. Jemsek, I am very upset that the board found any error at all on his part. He is a kind, generous, man whose integrity has been tarnished by doctors who sit in judgement when they do not understand an illness as evil as lyme. Medical school has not presented the treatment of anything as difficult to diagnose and treat as the lyme bacteria. I am afraid that we all will see more of this devastating post lyme syndrome unless doctors know to treat and diagnose quickly.
I work for a doctor who didn't know how to treat lyme and sent me to Jemsek so I could get help. I had been diagnoses 3 years ago with rheumatoid arthritis. When I took antibiotics for a sinus infection, I had a terrible arthritis flare and the doctor I worked for suggested I do a western blot test for lyme. At the time, I thought I was lucky that the test came back positive (even according to CDC standards). I had something to fight, rather than accept the joint destruction that rheuamtoid arthritis can bring.
After seeing Dr. Jemsek, a pick line and a month's worth of IV antibiotics-which is all that my insurance company would pay for, I still have severe joint pain, but many of the other symptoms have gotten better for now, such as "brain fog", extreme fatigue, headaches and memory loss.
I am angry that the first doctor I went to-my family doctor- with my rash and migrating joint pain 3 years ago, then the rheumatologist who tested every possible thing you might be able to test- DID NOT even think about LYME. Now, I don't know what my future holds-more lyme symptoms? Or JUST rheumatoid arthritis?
Believe it or not, my current rheumatologist calls my post lyme problems "cronic fatigue and fibromyalgia" along with rheumatoid arthritis and will not accept the possibility that it is lyme. He says that since I took antibiotics, the lyme is gone.
I think every day about the poor people ho have all of the symptoms of lyme and continue to test negative. They do not get the treatment they need in time to stop the invasion of this nasty little bacteria that is so hard to get rid of.
Wendy
Wendy, I am curious how you are doing now after a year since your post. I had symptoms of Lyme for several years before I finally figured it out, and after several more years of oral antibiotics, two months of IV antibiotics plus another month of oral antibiotics did the trick. Since then I have managed to keep the joint stiffness at bay using a glucosamine/condroitin supplement. My husband and I will be relocating to Hendersonville within a year or two and would like to be informed about medical personnel who are knowledgeable about this disease. We expect to be in the woods a lot and I really don't want to fear this for the rest of my life. One more note--my sister lives in a wooded section of NY State and both she ans her husband have contacted tickbourne Babisiosis and Erlykiosis( not sure od spelling), both of which are quickly debilitating and potentially more deadly than Lyme. They have been treated several times for these. They are fortunate to have a very aware doctor.

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