Doctor In Trouble for Lyme Disease Treatment

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

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Lisa M

United States

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#42
Sep 30, 2008
 
I am being treated by a D.O. who believes that 13 months of docycyline (100 mg, 2x/day) is all that is needed to treat lymes. She believes this cures lymes disease. During the 13 months she does a few blood tests to check for any adverse reactions to the antiobotic but otherwise, you take the dox for 13 mth, then test at 15 mths, and then they assumed you are cured. I'd like to find a book or article which discusses the pros and cons of this approach but have been unable to find it. Has anyone else heard of this? Thank you.
chris

Wilson, NC

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#43
Aug 9, 2009
 
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?
In nc heal thy self {if given no other choice}.
chris

Wilson, NC

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#44
Aug 9, 2009
 
If all else fails heal thyself.
sherryberry

Buffalo, NY

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#45
Aug 27, 2009
 
lori lawhead wrote:
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!!!!!!!!!!
are there any lyme literate doctors in buffalo ny
june

Kent, OH

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#48
May 29, 2010
 
http://www.doctoroz.com/videos/avoid-bite-lym... .

Many doctors are delusional and think that lyme only exists in NE.

My own doctor refused to believe my results even though I had them in my hand and in black and white and he told me that "I just wanted it to be lyme"...Are you kidding? No one wants it to be LYME ! That was the most absurd thing I had ever heard- and it is typical of all docs.

There is a huge fear in docs that people will come in their offices looking for a lyme test- I say - GIVE IT TO THEM- I suffered for 10 yrs an not one doc would do the test. I finally found a LLMD and he did the test for pennies on the dollar- after hundreds of thousands of dollars for test for MS-lupus and 20 other diseases- I finally go the right answer.

Stick to your guns people and get a WESTERN BLOT TEST.
june

Kent, OH

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#49
May 29, 2010
 
chris wrote:
<quoted text>
In nc heal thy self {if given no other choice}.
You need to have a western blot bood test for LYME.

Don't take no for an answer !!!

Check out the lyme disease web page and ask the people on there to give you the name of the closest LLMD in your area.

Normal docs are not to be trusted. GO TO A LLMD ONLY.

Someone who specializes in LYME
june

Kent, OH

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#50
May 29, 2010
 
chris wrote:
<quoted text>
In nc heal thy self {if given no other choice}.
Also- LYME DISEASE PATIENTS ARE TO NEVER_EVER have STERIODS OF ANY KIND !! EVER !!

NO ANTIHISTAMINES and DON"T TAKE PREDNISONE !!! IT CAN KILL YOU!!
LymeMom16

Bel Air, MD

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#51
May 30, 2010
 
Lee: go to MD Junction -> Lyme Support Group. Look under the Forums Tab for Requests for LLMD recommendations for list of LLMDs in your area.
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-
Sallie

Benton, KY

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#52
Jun 2, 2010
 
dave wrote:
I am also a Jemsek patient and leading a political movement to get the state of NC to recognize that Lyme Disease is in our state. If you are from NC and have a Lyme story or know someone who is or was infected please contact me at davet497@aol.
Hi Dave, I tried to email you but the email would not send. Not sure why. My best friend is in North Carolina and has had Lyme disease for the past two years. Today she lives the state for treatment..which so crazy that she has to leave her home state to get treatment for this disease. She has been told everything from joint pain to it is in your head... I know my friend and I know what all she has had to deal with.. Her doctors were just going to let her die rather then admite she had this disease.. Please contact me at salliesyorkshires@newwavecomm. net I can not sit by and watch this happen..I have to do something to help....
Sallie

Benton, KY

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#53
Jun 2, 2010
 
annie wrote:
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!!??
My best friend lives in Badin North Carolina and she has Lyme Disease...She leaves today for Washington DC for treatment.. Lyme Diseae is in North Carolina and the doctors there know it... they have turned their back on her and almost let her die. I talked to her this morning and she told her first doctor called her and told her not to go for treatment..that the doctor was going to kill her.. How crazy is all of this... She and her husband have to drive to almost 8 hours to get help and you know it.. her insurance company won't pay. They have made her a bed in the car so she can rest while they get there. My friend was full of life and very happy. Always busy and on the go.. now she can hardly stand and is in so much pain.. What is the problem with North Carolina..do they not care about the people who live in the state. If it were them or someone in thier family they would not stand for such treatment...so why is my friends life no as valueable as thiers..
LymeMom16

Bel Air, MD

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#54
Jun 2, 2010
 
Barb J wrote:
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.
Google "Under Our Skin video clips" to see free clips from the acclaimed movie. I am sorry, it is scary, but better to know...
LymeMom16

Bel Air, MD

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#55
Jun 2, 2010
 
Sallie wrote:
<quoted text>
My best friend lives in Badin North Carolina and she has Lyme Disease...She leaves today for Washington DC for treatment.. Lyme Diseae is in North Carolina and the doctors there know it... they have turned their back on her and almost let her die. I talked to her this morning and she told her first doctor called her and told her not to go for treatment..that the doctor was going to kill her.. How crazy is all of this... She and her husband have to drive to almost 8 hours to get help and you know it.. her insurance company won't pay. They have made her a bed in the car so she can rest while they get there. My friend was full of life and very happy. Always busy and on the go.. now she can hardly stand and is in so much pain.. What is the problem with North Carolina..do they not care about the people who live in the state. If it were them or someone in thier family they would not stand for such treatment...so why is my friends life no as valueable as thiers..
CALDA's Lorraine Johnson posted instructions on how to respond to insurance denials.pdf See if your friend can find the link maybe it will help her...
Patient

United States

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#56
Jun 4, 2010
 
You can't hide your Lyme eyes...
Confused

Candler, NC

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#57
Jun 7, 2010
 
Didn't they force Dr Jesmer out of the state?

I'm troubled since I just called a doctor about getting treatment for Lyme Disease.
I was told I would have to have both a Liver test, Blood Test and some other test BEFORE I could even SEE the dr!

I'd be a new patient of course, but has ANYONE ever had to get 3 different blood work tests BEFORE they even SAW a doctor?

That sounds highly unusual to me...

Civil rights lawsuits? Sounds like a plan to me.. Now try find someone that will do that Pro Bono, or we could do a class action suit.

Try post that heading on this forum... nationwide, of course, hard to find good personal injury atty in the Carolinas, unfortunately.
Anna

Hendersonville, NC

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#58
Jun 22, 2010
 
june wrote:
<quoted text>
Also- LYME DISEASE PATIENTS ARE TO NEVER_EVER have STERIODS OF ANY KIND !! EVER !!
NO ANTIHISTAMINES and DON"T TAKE PREDNISONE !!! IT CAN KILL YOU!!
Really June, WHY do you say taking prednisone can kill you if you have Lyme's Disease?

Reason I ask is, that I went to a clinic in NC and told them I think I have lyme disease....several weeks later came down with poison ivy and had to get treatment right away as I'm highly allergic to it.
They had all my records and knew I had been tested for Lyme Dis. though it came back negative.
Not even sure what kind of blood test they did, but when I went back for to be treated for Lyme disease, & asked for antibiotics anyway, the doctor got very hostile with me, and insisted that I was being "confrontational"!
That's crazy.. I was being polite and not even raising my voice or any such thing. I wasn't being "confrontational" in the least, I just wanted to be get some antibiotics to see if it would have an effect on my symptoms: did have the bulleye's rash back before Christmas, several months back, now getting joint pain all the time, fatigue, diahhrea, just the other day got that sharp eye pain, & I'm no hypochrondriac. The last thing I want is some dread disease or to be in ANY kind of pain!
We won't even get any more tattoos cuz they're painful to get!
Now, a few weeks later, see this sesame seed sized tick in our bedroom, on our pillow, for heaven's sake! We know it's a deer tick for sure.
There's people nearby who deliberately feed the deer, we almost ran into them several time just coming home, we've seen them in the yard, dozens of times, they are OUT THERE!
Yet, the animal control people refuse to stop these people from luring deer to their yards, because they say they have the right to SEE the DEER!

Like we don't have a right to stay alive? Well, that's WNC for you. Lots of sweeping important and critical things under the rug.
Think I need to call a regular doctor as we still have the predisone left and we've still got the poison ivy.

Please explain how taking prednisone can kill you if you have Lyme Disease? Actually it seems the joint pain has subsided quite a bit since I've been taking the prednisone, but notice other symptoms.. heart racing...bad stomach cramps & diahhrea.
Hope you still on this forum OP.
I have thought of going to the Infectious Disease Control, but not sure they'd even care about our welfare.
It seems in our area, it's more important that people can "enjoy seeing wildlife" than other's lives are safe! Some lady had her little Yorkshire terrier dog attacked & killed by a bear recently in a busy area, in our town, and no one even seems to think we ought to be doing anything about the bears that are roaming rampant on the city streets in broadlight!
They did have a Lyme Disease awareness thing in the eastern part of the state, but they claim Lye Disease is "extremely RARE" here.
No, it's NOT NC politicians. You've got deer all over the place. That ought to be evident by the fact that Biltmore Forest residents had to do a massive culling session to make it safer to live on their property.
What is going on with all these weird people? They want people to suffer or die from Lyme Disease?
Tyler Bunty

Hanover, PA

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#59
May 23, 2011
 
I still dont get why they would want to sue him if he was curing so many when i saw a video of a girl i knew that had lymes disease just like me stand up out of her wheele chair after seeing this man i cryed tears of joy to see this girl i knew to walk once again.What ever this doctor gave her cured her and that is what those people can not see it brings me so much anger to see how stupid the people of the guide lines are if me and my mother had enough money then we could of cured me of my symptoms years ago.
Jarvis

Brooklyn, NY

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#60
Jun 18, 2012
 
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-

These are quotes from a few years ago. I have same symptoms, have you had any luck? And where?
Thanks
Kelly

Raleigh, NC

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#61
Jul 27, 2012
 
I live in Raleigh and I have lyme disease. I was just diagnosed. The doctor brushed off lyme as a possibility, but tested me anyway. Turns out my suspicions were right. I am currently on doxycycline.

Anyone who says lyme is "NOT in NC"... Talk to me. Please. I dare you.
Maureen

Calgary, Canada

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#62
Aug 11, 2012
 
Somehow it reminds me of the crucifixion of Jesus! Really can't describe it in any other way. Doctors being punished for doing their jobs according to their oath, versus according to medical insurance wishes.
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
Maureen

Calgary, Canada

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#63
Aug 11, 2012
 
My feeling is that this is going to be one of the biggest plagues in history and that's why they don't want to recognize it. People need to watch Jesse Ventura's You tube video. Look up Jesse Ventura Plum Island.

Then you'll know why it should quickly become a world plague if it isn't already now, mostly undiagnosed or diagnosed wrongly as diseases like Alzheimers, MS, ALS (Lou Gehrigs), Parkinsons, lupus, Epstein Barr, and many other brain or neurological damage.

Lyme is likely 10 or 20 times more prevelant than people are aware of because of all of these misdiagnoses. That might also be why some MS patients don't recover from MS treatment. It's because they actually had Lyme instead.

Another video to search for on You tube is

Behind the Eightball Lyme
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

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