posted
Because I see a LLMD out of town, I have a local doctor whom I like take care of me between visits. He supports my treatment with my LLMd.
So why am I so frustrated? I think it is hard to explain some of my stranger symptoms. He doesn't communicate with my LLMd by phone, although he receives writeups from my visit.
I feel like I need more. How do I explain that I have a lot of small/and not so small symptoms and hope something can be done more?
How do you all deal with the local community of doctors. If you go to a specialist like a cardiologist, do you tell this specialist all about the lyme and deal with the possible wierd reaction, or just not mention it?
Any imput would be greatly appreciated!! Thanks!!
(And by the way, my sister just had a baby girl this afternoon! There still is so much happiness out there)
-------------------- --- Rachel ---
Please accept my resignation. I don�t care to belong to any club that will have me as a member - Groucho Marx Posts: 26 | From Washington DC | Registered: Jan 2006
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posted
My experience is that it does no good to tell other doctors. They sort of roll their eyes at you anyway. Who needs that? Not me.
My LLMD is far away also. At one point, he wanted me to get some IVs. I luckily found an alternative doctor where I live that was willing to administer them according to my LLMD. That's all I've asked him to do, but I sure am grateful that he was willing to help me out.
It's still so hard for me to really understand why we're treated like second class citizens or that we did something wrong because we have Lyme. It's a friggin' bacteria!!!!!!!!!!!!!!!!!! I'm getting to the point that the next person that looks at me in disbelief, I'm going to punch out. Ha. Like I could. But, thinking about it seems to make me feel a little better. What morons!!
Posts: 856 | From Texas | Registered: Jan 2005
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posted
I've only been diagnosed since this past fall..but every doc I deal with is going to have the update on what's going on with the lyme. I'm planning on going in armed with my meds list, symptom list, and questions.
They can't help if they don't know. If they won't help...movin' right along.
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Consider them LL ducks in training.
Personally I don't have the time for other ducks. I wish my LLMD was a dentist gyno and dermatologist.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I'm with you on that one Heather...and a urologist as well!!!
Suprisingly, the 3 ducks i have gone to since my Fall diagnosis have all believed me. They ask questions as to where I got the LD and they believe me. The gyn I saw actually said that they tell us to look for the bulls eye rash, but most dont get the rash. She also said many if not all get it from walking thru grass, NOT hiking in the woods!!! She asked if i was seeing a lyme specialist....i said yes and she said good!!
I live in Eastern PA, so i think that is why more ducks are understanding.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
MizMo, I have found two kinds of non-LLMD's when I talk to them about Lyme.
One are the docs who just don't know anything. They may read the IDSA guidelines, and they will probably believe them. They will think that you do not have Lyme anymore. But they will be polite, and sympathetic. They will believe you have symptoms, and may offer ways to treat the symptoms.
But there is another kind of doc, who seems to think it is a personal affront if you disagree with him. He is The Doctor (i.e. God), and he gets angry with you for wasting his precious time. He seems intent on proving you wrong, and stupid.
He mis-diagnoses you sometimes without even examining you, and clearly doesn't want to treat you, not even for symptom relief. He thinks you're nuts.
Hope you find more of the first type, and less of the second.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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posted
I agree...wish our LLMD's were all the docs we need rolled into one. Though I suppose we'd be back to the jack of all trades, master of none deal if they were.
Thanks Shaz. My other docs are mostly the first kind. They do however, seem open to education. So we'll see how it goes.
The second kind I've encountered before I even knew I had lyme. The infectuous disease doc that dismissed me because the standard tests found nothing. The nurse practioner that tried to convince me I was depressed. Bah!
posted
Thanks for all your responses. I guess there is not just a single answer to a complex situation.
There are so many things I dislike about seeing a specialist for the first time.
First of all, there is the waiting in his/her examining room and going over in your head what to say (or not). Sometimes for a long time.
I live in an area where there are a few teaching hospitals, and I thought this was supposed to be good as far as the quality of doctors, but for me I often end up seeing a resident who takes my whole history and then walks out and privately summerizes for the doctor before he comes in. This never!! works. My situation is hard enough to explain one on one. This happened recently with a infectious disease doctor at George Washington U. Hospital. I am making sure I never find myself in this situation again. I would just rather stay home in bed and rest.
The fact that I have had my symptoms for many years seem to color the doctors opinion. Sometimes I just want to say that they are a few weeks/months old instead of say seven years! I haven't lied, I know that is a bad idea, but I am sure tempted!
-------------------- --- Rachel ---
Please accept my resignation. I don�t care to belong to any club that will have me as a member - Groucho Marx Posts: 26 | From Washington DC | Registered: Jan 2006
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I was treated for eight years by my PCP who meant well but didn't have the experience to get me healthy.
I am just finishing up my first year being treated by an LLMD. I am no where near healthy and I have a long way to go, but in my opinion not going to a Lyme "professional" has only complicated my recovery.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
just now switching pcp's, so it will be interesting to find out how much s**t will be said about lyme. maybe, i should be more positive, but i can't today.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
On a slightly different note, my experiences have been mixed.
In addition to the two types shazdancer described, there have also been a few who are interested in how I am being treated and whether I am progressing, or better.
My dentist knows several lyme patients socially and is very interested in learning what might help them. The local walk-in clinic (which made the initial diagnosis!!!) is also completely supportive. My allergist threw out the usual misinformation but accepted new information I provided and noted that I had gone untreated much longer, I probably would have needed a keeper. My internist wonders if he has it. His PA is amazed that I DON'T have asthma, COPD, arthritis... and that now I am rarely sick with the severe respiratory infections I used to have half of the time.
I have taken it upon my self to try to educate them and feel i have had some success. Maybe that will make it easier for the next person.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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"One are the docs who just don't know anything. They may read the IDSA guidelines, and they will probably believe them. They will think that you do not have Lyme anymore. But they will be polite, and sympathetic. They will believe you have symptoms, and may offer ways to treat the symptoms."
My family doc seems to be of this type, exerpt from above, as he tries his best to do treat me accordingly and ban those that doesn't work. Even though, it's been about 2 months since he's finally accepted that I may afterall have Lyme Disease after several false negative tests for the last 3 years, he has begun to take me more seriously to fight this illness more aggressively, basically since I am so fed up with these ongoing worthless rollercoaster ride.
Just recently he had referred me to an infectious disease specialist for further prognosis, where I did more tests once again. Yet, I should have known from the beginning that this specialist was not going to find or support me with the Lyme Disease diagnosis from the moment "lyme disease" slipped from my mouth as he seemed to immediately wave it away as a bunch of hogwash!
Just yesterday, I went back to my family doc for a follow-up and I couldn't believe my eyes on what I just learned there! Apparently, my doc showed me the report he received from the infectious disease specialist in which he stated that he didn't believe I have lyme disease, but rather that I have chronic mono. I had mono way back in 1982 for goodness sakes!!
Oh, my butt!! And I exclaimed to my doc, "Do you mean to tell me that he would think I have chronic mono while I am having all these horrendous joint aches?!! How do you explain this away??" My goodness, I couldn't believe this hype and went on to point about about the newspaper article from John's Hopkins on how the lyme blood tests are not 100 percent effective for numerous possible reasons, as well as the emphasis on the clinical diagnosis being a more practical one in which I do meet most of the criteria.
Thankfully, my family doc seems to respect my disregard to this infectious disease doc and take my words more seriously and is going to look into some lyme literate docs in the area and try to correlate on some proper treatment and continue me on antibiotics nevertheless, which seems to help me while on it.
Posts: 90 | From Maryland | Registered: Jan 2006
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