Great information and great advice.
I don't know how much your PCP knows about lyme, but the one very important thing to know is:
If you are re-tested, please bear in mind that those much-coveted, flaming positives can go away. However, it does not mean that the infection is gone. There are very many reasons why people test negative. If your symptoms persist, even if the positive test doesn't, it is logical and prudent to continue treatment.
My sister tested positive at one point. When she felt WORSE, she tested negative.
but then under treatment (IV antibiotics) developed the so-called classic bull's eye rash
(3 of them on her legs)-- which she had never had before. Or noticed before.
No rash does not mean no lyme. But if you do develop the rash, it is a definite indicator that the bacteria are there.
One day at a time, one difficult MD at a time.
It is amazing that MDs are as stiff-necked as they are about this. I think what has happened is that their professional prerogatives -- knowing everying worth knowing; being the smartest kid in the class -- are threatened by snotty-nosed patients who challenge them. I'm serious.
It must take a lot of confidence to be able to act as a physician, to cut people open, to make life-and-death decisions about fellow humans. But at times, 'hubris' takes over: that fine word, applied by the ancient Greeks to people like Icarus, the clever fellow who fashioned wonderful wax-and-feather wings for himself and learned to fly...but he flew too close to the sun, the wax melted, and crash-go-boom. In the modern lingo, MDs hate being called on their sh*t.
And now the internet! It makes MDs nuts. I have had many MDs ask me where I read whatever I am saying to them, and realized too late that saying "On the internet" is a mistake. It brings only sneers. What I have learned to say is "The [ABC] Journal of Medicine, and here's a copy of the article." I don't mention that I located the article on the internet.
MDs are only human, but that's no excuse. The answer is to keep looking for a humble and open-minded MD, and to educate oneself. In the not-to-far future, we will be vindicated, and these MDs will be shamed ... assuming they are capable of shame.
None of this helps you get better, but if you can accept it as another bothersome factor to deal with on the road to getting better, then it will help your mental state. Just as I try to stay away from toxic people who wear me out, I have learned to leave toxic MDs behind. It's harder in an HMO, but even in a PPO, I pay a lot out of pocket, since more and more MDs can't afford to work for what insurance companies are willing to pay them. (And that's only going to get worse.) I know people personally who will keep going to lousy MDs they don't trust just because the MD is 'in network.' Life's too short, imo, esp when dealing with health.
I would stick with your good doc and let the rest of them rot. You may need them for specific things in future, so no point in 'ticking' them off ... it's a long road, but you are on your way.
You might ask your friendly MD if he is familiar with ILADS treatment guidelines ... they are posted on ILADS [dot] org. If you google ilads [dot] org, the first hit is the ILADS website, and the first sub-item there are the guidelines. They're long, but print them out and take them with you. And read them yourself! Sometimes MD who are edging their way into an ILADS-friendly position are just not aware of what ILADS actually says, tho it sounds like your MD may be well on his way.
All good wishes to you -- hang in there. You are not alone.
Thank you both for your responses and advice. I do not remember if I had any symptoms after the tick bite last may but I know I didn't get the classic rash which I was told if I didn't have the rash I dont have it when I called the previous DR I was seeing so I just forgot about it, but when I think about it all I can say I started with symptoms in Oct/Nov. I started feeling tireder than usual and I started having anxiety attacks that came out of no where. I had severe insomnia for 2 or 3 months, and then I was severely depressed and exhausted I had a very hard time getting out of bed to take care of my kids. I did it just the same but it wasn't easy to get myself motivated.
Sometime in January I started having severe pain in my knee which I dismissed because I had rapidly gained weight in a short time, and figured it was to much for my knee to handle. I also became severely tired and my shoulders started to have pain and I couldn't do much because my arms and legs became so so weak and tired, and I also had severe exhaustion no matter how much sleep I got. Then it was the shooting pains everywhere and the swelling of the joint on my big toe and achy wrist joints. I thought and thought as to what was wrong with me, and it didn't dawn on me until this april that I was bitten by a tick and I just may have Lyme, so I looked up symptoms and the ones I was having matched mine so I went and asked to be tested.
I recently seen my MD who put me on the antibiotics and because of what the ID reported to the head MD she wanted him to have me test for hiv, hep, lupus, and syphillis. They also checked my thyroid and complete blood count. Before testing for all of those things my doc and I spoke and he was still in aw that the ID MD was refusing to say I have lyme disease because my test results for lyme were all very high positives and that she also told me to stop the antibiotics!!. The ID dr also suggested a rheumatologist even though all my test results for that factor were all negative I refused to go to that dr because I wasn't going to allow them to ignore the REAL diagnosis. My doc said I know you have lyme and I know it's all Lyme and I do not think you have any of these things in question, but in order for me to treat you properly for that please just agree to get these tests out of the way so I can shut everyone involved the hell up, so I agreed and went for the labs.
They called me yesterday and told me all my labs looked good and my MD wants to see me when I am finished the anitbiotic so I have an appt with him. Although I have a doc that wants to help me I still feel like even he may need to research a little better in order to treat me properly. I don't understand why most ignore lyme disease I mean there is probably a slue of people walking around with it and the medical community wants to sweep it under the rug or not admit it even exists. I know H1N1 was a big topic but what about lyme bacteria that moves silently through flourishing away sickening millions of people because it goes purposely unacknowledged due to lack of education?? I know it's not an airborne infection but there is billions of ticks out there getting people very sick and drs aren't educated enough to pay attention to this crafty lil bacteria. What about the hippocratic oath?? IDK I am livid along with everyone else that has Lyme and I think this is absolutely outrageous with how it's dealt with and taken so lightly.
I told them all I was bitten by a tick a year ago so I know I have had contact with one. I have the symptoms and I tested highly positive yet I was told by an ID MD I didn't have lyme I probably had lupus or HIV instead and told me the lyme test meant nothing because they were useless and had no point. I read horror stories about others as well and I feel terrible for them as well. I am thankful that the MD treating me is willing to help and accepts that I have the lyme bacteria festering away in my body, but I am anxious about who else will get in the way of the treatment I will need because I am sure the guardrails are not all down yet.
Like others who have posted, I am shocked by your infectious disease specialist's response and at the same time the proactive response from your PCP.
You say your were bitten by a tick. You also say that you were bitten in May. If I recall correctly, May and August are the spike months for Lyme transmission in the Northeast.
Your Western blot tests were positive with 5 bands reactive on the IgG and 3 reactive on the IgM bands. Its beyond my thinking that the infectious disease specialist dismissed these test findings and did not put you on antibiotics. Even if she does not believe that you have Lyme, what's the worst case scenario of putting you on simple antibiotocs for a month with all of the information she has that does in fact point to Lyme? She's defintiely not following protocol.
Thanks goodness that your PCP wants to discuss this with the head MD.
Given that you have had this for more than a year, I would recommend that you find either a neurologist or another doctor who specializes in Lyme Disease. My son was dx'd with Lyme late in the game; exposure could have been anywhere from 8 months earlier to 20 months earlier. It took two rounds of oral antibiotics and one round of IV antibiotics to wipe out the buggers.
We're in East LYME, Ct and I ended up taking him to a neurologist at Children's Hedical Center. The neuro was not an LLMD in the sense that he did not believe in prolonged courses of treatment with antibiotics, but he did take us seriously when we said that symptoms were not going away and that he was developing neuro symptoms.
Good luuc to you and hope you don't have much of a Herx reaction. It can be worse when the bacteria has such a long time to invade your body.
Keep us posted.
Audrey
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.
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.
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.
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 =)
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