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Lyme Disease Community
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Avatar universal

Infectious disease MD dismissed my positive test results

I am a 34 year old female and live in New Hampshire and tested positive for Lyme.  I went to infectious disease yesterday with my lab results in which I tested positive for lyme with western blot IGG IGM I had 7 reactive bands out of 10 and 2 out of 3 on IGM .. I was bitten last year in may by a nymph deer tick and was told I dont need medical attn unless I had a bullseye rash develop.  I didn't see and rash so I figured I was fine, and forgot about the tick bite.  I can't recall if I felt ill anytime after that and if I did I am sure I just dismissed it as your average virus and such.. I now suffer from shoulder pains, weakness in arms and legs, chronic fatigue, depression, bouts of crying for no reason, neck stiffness, knee pain, swollen toe and wrist joints, and shooting pains from joint to joints .  The doctor told me yesterday that i did not have lyme and those aren't symptoms of Lyme but of Lupus or liver disfunction, and when i asked what were her def of symptoms she said simply "NOT THOSE".  I told her "but the test results say I have lyme"  she said that the test results were useless and there was no point in them.  She tried to send me down to her lab for liver tests and tests for Lupus and suggested I test for HIV.  She wouldn't let me talk and disregarded my test results as if I hadn't been tested at all.  I left the place in tears basically and called my Primary care physician who has me on doxy 100 mg 2x a day for 30 days and conveyed what had happend with this supposed infectious disease doctor.  He is at a loss for words and wants to discuss it with the head MD at the office because he doesnt understand this ID MD's findings.. I am sitting here sincee then all confused and wondering if I will ever find help if I need it further.  How can she say I dont have Lyme with so many positves and reactives on the results??  Has this ever happened to anyone?  does anyone have any referrals of lyme specialty MDs in the new Hampshire area?? ty in advance and ty for reading
10 Responses
317787 tn?1473362051
I am so sorry that you have had this experience, I am sure someone else will come along who can help, I don't know anything about lyme disease but know something about uncaring unfeeling doctors.  I would write this woman off your list and find another one.  There is something called Angie's List which you can look up different kinds of doctors and find one that has had favorable results from people in your own area.  Or...your own doctor may know of someone else.  Obviously something is wrong with you however this woman doesn't want to help you so I would find someone else.  Easier said than done, I know, I met a doctor similar to the one you are talking about.  She walked in to the room and said "why are you here?  what do you want"  I was floored, I had gone to her for help and she acted as if I were bothering her.  You will find someone better.  This woman has to be a fluke of the medical community where you live
Good luck to you and Please let me know how you are doing and what the results are when you find out what is wrong
Dee
Avatar universal
TY for you support and advice.. I  myself was flabbergasted with how this Dr was treating me and my situation.  I had many questions and she shooed me off like a house fly basically. I am waiting for my Dr to get back to me so hopefully he will have a better direction to point me in soon.  Thanks again =)
Avatar universal
I second Dee's post.  That MD's actions are awful, but if it gives you any consolation, you are far from the only patient who has been treated this way.

There is all kinds of confusion and controversy over the diagnosis and treatment of Lyme, as you may be aware, but few MDs will say the tests are 'useless' -- the most they usually say is that the tests are unreliable in some way (and the tests are unreliable, but useful nevertheless).  However, I have been to MDs who would not even address my test results and symptoms and one (an ID doc) said, 'Don't make another appointment, but call me in a few months and leave a message that you are fine' -- because he was so sure I was not ill.  Not quite as rude as your MD, but with the same effect.  

If you go to the websites ILADS [dot] org and truthaboutlymedisease [dot] com [go to the tab Resources, then down to the very bottom of the list to LLMD referral] and see what pops up.  We don't post LLMD names in the clear here, because of harassment by local medical boards for 'overtreatment' of patients, but you can send private messages to any of us through this website.

I am very sorry this has happened to you, but in some ways, the MD did you a favor:  she could have not laid her cards on the table and just strung you along hemming and hawing and telling you to check back in a month or three blah blah blah, which would delay you doing what you are about to do now:  finding a serious doctor to treat you.  

Your symptoms sound like the ones many of us have, so in that you are definitely not alone.  Your primary care MD sounds like a good person to have on your side, and my LLMD insists that I have a general MD to take care of me in all the ways I am not ill with Lyme ... my only problem being that there is nothing wrong with me *except* Lyme!  Finding a regular doc for those purposes who will see me and treat me for any odd thing that comes up has been a real struggle, however:  MDs who don't 'believe' in Lyme don't want anything to do with me, even if I am specifically not consulting them about Lyme.  So I would stick close to your primary care guy, he sounds like a keeper.

Hang on, 'Liv' -- and stop by here whenever you feel like it.  It's been a great help to me throughout my illness.  Take care, take heart -- you aren't alone, as you can see from Dee's kind message.
1210011 tn?1281475965
It was unfortunate that you had that experience but also unfortunate is that it is not uncommon. Although I've met one infectious disease doctor who knows how to recognize and treat lyme disease, in general, they are dismissive of anyone, even those with a (rare) positive test because of the political climate  surrounding this disease.

I suggest that you join NH lyme disease support group e-list on yahoo. People there can direct you to NH doctors who can assess you for lyme based on what you presented. You are fortunate, as Jackie stated, that you seem to have a supportive PCP which is important for lyme patients and anyone suffering from disease of complex medical issues.

http://******.******.*****.com/group/KnowLymeinNH/

If you can accept PMs, I'll PM you the information I have on Doctors in NH. You live on the Mass border but unfortunately, between MA & NH there are very few doctors, never mind within a reasonable distance, who recognize lyme.

Sorry you had to deal with this. my advice is to try to leave it behind and move forward to get the assistance you need, you definitely are not alone in this.

good luck.
Avatar universal
Thanks, 22.  Good advice.
1132574 tn?1271676066
This is insanity. I can not believe you had to go through this. What a quack. And you seem to have a known tick bite which is what really gets me! And you live in NH- a lyme hot spot! Uggh!

Just curious- did you find the tick/see it? Just wondering how long after the bite your symptoms started?

Everyone else gave you great advice. I have another suggestion for when you feel up to it... There's a book called Cure Unkown- Inside the Lyme Epidemic by Pamela Weintraub. It's about her troubles with getting treatment for her and her family and about the politics/controversy surrounding lyme. I'm finally just starting to read it and wish I had MUCH sooner. Your story made me think of this book... You can find it on Barnes & Noble.com and maybe even at your library.
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