posted
I won't bore everyone with all my symptoms, but trust me they are consistent with Lyme. Most serious are severe fatigue, Vasculitis in brain, insomnia, etc. Here's my problem, I have been going to an Infectious disease doc at J Clinic in NC for 8 months and they still are "diagnosing" my condition. This is a doc who is supposed to be the best and they have run all the blood tests you talk about. Initially, they said I had Lyme disease, put me on antibiotics for about 2 months and then I saw Dr. J himself and he took me off the antibiotics citing an immunilogical disorder. He wanted to run further tests and since then everytime I have an appointment they find a problem, order more testing, want to hold off on the antibiotics, and so it goes. Meanwhile, I am deteriorating everyday. I will mention the doctor was brought before the medical board here in NC and they just issued their ruling to put him on probation for a year with a stay so he can continue to practice. The latest test they want to do is have me evaluated by a Neuro Psychologist because of the vasculitis in my brain. I am really frustrated. How long did it take for you to be diagnosed with Lymes, once you were in front of a doctor who was familiar with the disease running the appropriate tests?
posted
Forgot to mention that now they won't come out and say I have Lyme disease, they say my symptoms are "consistent with Lyme disease." And tell me they want to run another test.
-------------------- Jimmie Rice Posts: 8 | From Greensboro, NC | Registered: Aug 2006
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posted
My test came back positive in February of this year. I have seen doctors over the last eight years, complaining of various symptoms (which I didn't know were Lyme).
This year the doctor who had me tested still questioned the (positive)results, because as she said, she had me on two months of abx and I didn't seem to getting any better. What a joke.
So, I finally saw a LLMD in July, and he diagnosed me with "Neurological Lyme Disease".
I first had complaints in 1998 and got truly diagnosed just last month. It took eight years!
I'm glad you got the diagnosis. It's a relief to finally know what is causing all of your symptoms, isn't it?
Posts: 366 | From MA | Registered: Apr 2006
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Carol B
Unregistered
posted
Probably because of the recent court ruling, the Jemsick clinic will be going over you with a fine tooth comb putting in extra extra precautions since they are under scrutiny.
It can be frustrating to you and the doc. I dragged on for two years with symptoms going from one ignorant specialist to another-until I finally went out of network to an LLMD.
She diagnosed me clinically, which was then substantiated by positive bloodwork. I began treatment a month after I first walked into her office.
This heat recently made me feel like I was going downhill rapidly-thought I was going to die-but now it is a much cooler morning-with windows open and i feel more refreshed and ready to meet the day.
Lyme requires a lot of patience-and faith. Carol
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
I agree 100% with Carole B, who said:
"Probably because of the recent court ruling, the Jemsick clinic will be going over you with a fine tooth comb putting in extra extra precautions since they are under scrutiny. "
What were your Igenix results?
I do remember reading from his old, dismantled website, that he had criteria for diagnosing, that were more liberal than IDSA but still required one lab evidence (maybe one positive band, if I remember correctly).
Perhaps he would have preferred to run a longer abx challenge to see effects symptomwise, and in testing, but could not because of the new ruling.
But because of the Board's inability to consider/appreciate this, he now has to use more stringent criteria. Basically, I am interpreting this as saying he cannot be allowed to make a clinical diagnosis.
How did you respond to the antibiotics?
Are you doing any meds at all?
Have you tried the Buhner protocol?
Have you considered going out of state, like Va., for a second opinion (I would not look in NC)?
Of course, there is always the possibility that it may be something else, and Dr. J. may feel this is a likelihood and is looking for it.
Yes, everyone has to jump through hoops now, delaying treatment, etc. due to the ruling. Everyone suffered the consequences and is paying the price for the Board's ruling. Shame on them.
Northstar
[ 05. August 2006, 11:09 AM: Message edited by: northstar ]
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi there JRice!
I have an MRI consistent with brain vasculitis too, but also multiple lesions consistent with lyme disease or MS.
Tipping the diagnostic scale in favor of lyme was (1) a recalled tick bite and rash, (2) textbook neuroborreliosis symptoms; very strong CDC positive western blot.
What were your western blot results, and how did you feel while on antibiotics? These are important diagnostic clues.
My first month on abx nearly rocked my socks off.
Depending on the answers to some of these things, your doctor would want to diagnose you very carefully.
Just as lyme is known as 'the great imitator,' there are also many neurological diseases that could mimic lyme. I think your doctor is very smart and thorough to dx you over a period of time.
Remember, even with MS, it's rare to get an immediate diagnosis -- most people are left in the "probable MS" or "possible MS" bracket for long periods of time while being watched and evaluated.
I would trust your doctor, who clearly isn't into throwing a lyme label on everyone that walks in the door, contrary to what recent politics might suggest.
Sounds to me like they're just VERY thorough.
Hope you find the answers you need very soon.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
quote:Originally posted by JRiceCPA:
I won't bore everyone with all my symptoms, but trust me they are consistent with Lyme. Most serious are severe fatigue, Vasculitis in brain, insomnia, etc.
Here's my problem, I have been going to an Infectious disease doc at Jemsek Clinic in NC for 8 months and they still are "diagnosing" my condition.
This is a doc who is supposed to be the best and they have run all the blood tests you talk about.
Initially, they said I had Lyme disease, put me on antibiotics for about 2 months and then I saw Dr. Jemsek himself and he took me off the antibiotics citing an immunilogical disorder.
He wanted to run further tests and since then everytime I have an appointment, they find a problem, order more testing, want to hold off on the antibiotics, and so it goes. Meanwhile, I am deteriorating everyday.
I will mention the doctor was brought before the medical board here in NC and they just issued their ruling to put him on probation for a year with a stay so he can continue to practice.
The latest test they want to do is have me evaluated by a Neuro Psychologist because of the vasculitis in my brain. I am really frustrated.
How long did it take for you to be diagnosed with Lymes (NO S on lyme..BG), once you were in front of a doctor who was familiar with the disease running the appropriate tests?
Forgot to mention that now they won't come out and say I have Lyme disease, they say my symptoms are "consistent with Lyme disease." And tell me they want to run another test.
Since you are new, I will send you by PM, private message, my newbie links of 13 pages which includes a link to TREEPATROL'S NEWBIE LINKS; very thorough & a must look thru & read!
You don't feel lucky, but actually you are. I've been sick 36 years with chronic lyme, and 34 yrs. MISDIAGNOSED; can't imagine why when lyme mimics 300 other illnesses!?! Treated for my LYME, notice NO S on the end ok, for 2 years, and recently my new LLMD declared me "in remission"!
I've seen 40=50 MDs/specialists to reach my positive chronic lyme disease after my positive IGENEX WESTERN BLOT IGM/IGG! So you are lucky you haven't gone years and DECADES like so many of us including Lymetoo/TUTU!
I'll send you my newbie links before I forget it. Glad you came aboard to learn more & compare notes/advise with others walking in YOUR SHOES! Bettyg
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quote:Originally posted by northstar: I agree 100% with Carole B, who said:
"Probably because of the recent court ruling, the Jemsick clinic will be going over you with a fine tooth comb putting in extra extra precautions since they are under scrutiny. "
What were your Igenex results?
I agree and wonder too about your Igenex results? Could you post the bands here??
I was misdxd for 42 yrs, treated for the past 6....so that's 48 yrs. The good news is that I'm doing GREAT!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Thanks for everyone's responses. I don't have the results in front of me, but from what I remember when they gave me the results of the blood tests, they said I had two bands that indicated Lymes. I will look for them and get back with specifics. When I was on the antibiotics, I experienced the Herx phenomenom in a big way. I was only on them for two months, so I don't remember feeling a lot better because they made me feel worse when I didn't take them on the weekends and nauseaus when I did take them. I will say that every symptom I am experiencing with one exception is on the list of symptoms for Lymes-and my list is long including the fatigue, cognitive problems, sexual dysfunction, depression, anxiety, agitation, arthritis, chronic muscle pain, suicidal thoughts, diagnosis of bipolar (very recent), significant dental problems when I previously didn't have a cavity in 40 years ( 3 root canals and two had to be subsequently extracted), complete insomnia, and on and on. I had to quit working as a CPA which has put enormous stress on my marriage, not to mention the laying in bed all day and being up all night. I previously raised two boys as a single parent while working 60 hours a week, not with complete ease, but I could manage to be a "supermom" of sorts. Now, I can't spend more than a couple of hours with my 4 year old daughter without getting worn out.
I agree that I think Dr. J's legal problems are affecting his diagnosis, but for goodness sake. The outlying symptom is that I have an immune disorder-not sure of any more specifics, but it was the reason the Dr. said he was taking me off the antibiotics. It, however, hasn't been cited by him as the reason why he won't put me back on them since that initial time. It's other issues they find that seem relatively unrelated to me. At least they are not communicating clearly the importance.
I have been wondering about Lupus. I, unlike a lot of you, jumped right to the Lupus because I have a childhood friend suffering from it and our symptoms were almost identical. I skipped over being diagnosed with MS, Lupus, chronic fatigue and all the others. I started with the appropriate doctor running the right tests. I guess the glitch was the action before the Medical Board. It has been resolved now, so hopefully he can focus on the medical stuff now. But as a precaution, I have an appointment with my internest next week. She has all the results from the clinic and I printed out the list of symptoms from one of the recommended sites and have highlighted every symptom I have.
Anyone have any other suggestions? And why did the one respondent say not to try to find another Lyme doc in NC?
-------------------- Jimmie Rice Posts: 8 | From Greensboro, NC | Registered: Aug 2006
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posted
Because of the medical board ruling against Dr J most docs in NC would be very hesitant to make a Lyme diagnosis. Even before that, about a year ago, hubby had a PCP in Greensboro fire him as a patient because they did not want to be involved with a Lyme patient receiving IV antibiotics (prescribed by our LLMD in Missouri).
Hubby's current PCP is in Asheville, NC but we do have an appointment next Friday in Winston-Salem, NC to try to find someone closer to home.
In my opinion, if the doc can't make a diagnosis in 8 months then it is probably time to get a 2nd opinion. Get copies of all your medical records for yourself. It is important for your own info and if you decide to file for disability or Social Security you need to know what is in your records.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Pal, they can make a diagnosis, unfortunatly, what has happened with you is that you are the victim of politics.
Now, I can't state with certainty exactly what has happnened in your case. You may be one of those strange cases of someone with two or three simultaneous diseases, one of which being Lyme and its co-infections, and the doctors don't know what causes what. To further compact this delima, situations like this are usually only correctable through empiracal trials, aka: what does this do, and in effect you end up being a guinny pig, but the fact is this would be the result of extremely difficult cases regardless of the physician assuming they were willing to treat.
In this case, they are putting such enormous pressure on the clinic that it has lead to unfortunate events as your case describes. I'm sorry.
Everyone reading this should understand how important this war against Lyme has become. It effects the lives of real people, with a real disease, with doctors who know, and yet are forced by outside authorities (the NC med board) from trying and diagnosing lyme as it should be done.
Posts: 559 | From Cary, NC | Registered: May 2006
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
"And why did the one respondent say not to try to find another Lyme doc in NC?" [Have you considered going out of state, like Va., for a second opinion (I would not look in NC)?]
After reading this board for over 2 years, I, myself, would go to a recommended llmd. Consensus is that Dr. J is the best for NC. I have never seen anyone else mentioned.
That is not to say there are no md's who treat lyme in NC; I have run into several people who have been treated by their primaries, and are doing well. All were obvious....bite, big rash, etc. with quick treatment.
My opinion is that Dr. J's expertise is with those who have been misdiagnosed, undertreated, or who had a gradual onset, with perhaps a cataclysmic event precipitating a major barrage of specific symptoms. That is my opinion, only.
Now, you have only 2 bands, type unknown at this point, yet displayed what could be interpreted as a herx to the meds. That is evidence of possibility.
The problem is trying to find someone else who will consider this. I went to a llmd because I did not want to mess around at all with my symptoms. I was in very bad shape. I did not know what was wrong, but lyme was a possibility. Why would I go to someone who may or may not know? You may want to read the "alligator pit" thread.
My job was to find out what was wrong, and to get better, not to educate or cultivate an llmd. My Igenix was the only indicator from several labs, but it was stronger than yours (18 was ++, many indeterminates). I did the right thing for me, by going to a llmd.
I feel there is no one of Dr. J's caliber in NC, is all I meant. I may be wrong. But if you are looking for a second experienced opinion, I would go to someone who has treated lyme. The closest other state is Va.
Dr. J. may be seeing something else....we are not doctors. Yes, it would be easy to blame the med board fiasco for this, and accept that as a likely event,, but we do not know. If there is an immunological problem, maybe this may alter recommended treatment so they have to be more careful for your sake. Then again, maybe they are looking for more lab indicators to justify a "possibly lyme" dx so they can treat without repercussions from the board.
So, if you are concerned, unhappy, getting worse, etc., it is advisable to get a second opinion. Also, if you go out of state, you may find it easier to get treatment should they dx as lyme, since this has been such a big deal here. Doctors in NC may be afraid to take on a case like this.
All I meant was that if you do get a second opinion, make sure they know what they are doing. And hint hint, sometimes medical schools just re-iterate the IDSA policies, or say there is no lyme here, etc.
I feel it would be ok to keep seeing Dr. J, while you check out another dr. Who knows, maybe Dr. J may find a critical piece of information.
And then again, perhaps your internist may have knowledge of ILADS guidelines. There are probably some "closet" ILADS md's out there somewhere. I just did not have time to check them all out.
Then there are herbals to tide you over through this time. (see Buhner's book).
Your story sounds like you are deeply affected by your symptoms. It is frustrating to have your health plummet, still not knowing what is going on, nor receiving treatment.
I was there, too, for 4 months and it was the most frightening thing I have experienced. I had no one to help. At least a hurricane or flood or lightning strike is over in a day, with just the aftermath to clean up. Waiting and not knowing and suffering are worse by far.
Northstar
[ 05. August 2006, 10:17 PM: Message edited by: northstar ]
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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I just finished having a neuro-psych evaluation. I thought it was awesome. It lasted 12 hours, but I got to talk with the doctor afterwards who gave me the results.
He had Lyme years ago, is from N.Y., and totally Lyme literate.
Anyway, the tests showed that I'm having problems stemming from the left side of my brain. He was also able to ascertain that I am no longer able to multi-task, I'm having a problem "processing" in general, amongst other things.
This now gives the neuro a specific area to concentrate on. I had a deep seated fear that they would tell me my symptoms were all stress related (like every complaint I've had for the last 10 years).Well, looks like they weren't.
I'm wishing you the best of luck, Jill
BTW, the doctor that tested me thinks I still have Lyme.
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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