I know this is a sensitive topic due to the fact that as Lyme sufferers, we are faced with considerable adversity.
However, to say I am frustrated is an understatement. There are good doctor/treatment experiences and bad in all fields of medicine. But I guess I had high hopes this time around. I have been ill for half my life and it wasn't until two years ago that I was diagnosed with Lyme. I don't want to get into the grizzly details (certainly grizzly and peppered with a comedy of errors), but I have to say that the past two years have probably been the worst and I credit it to the practice where I was a patient.
I am wondering if anyone else has found themselves in such a bummer of a situation. It is not my intention to toss around disparaging remarks, because I know there are many qualified, compassionate LLMDs out there. I just feel SO let down, especially when I put so much trust into my treatment. Sigh.
Feel free to commiserate, provide insight, or suggest methods to refocus my upset in a positive way.
Many thanks!
Posts: 38 | From behind the definitions | Registered: Sep 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hi Fancy,
I live in Wisconsin and I see you're from the Chicago area. I'm not sure who your doc is but there's a couple of good one's in Wisconsin. Send me a PM and I'll be glad to help.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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My neighbor, who works for alternative mds has referred me to one in WI. She highly recommends the doc, and I have considered making the trip.
I guess I just feel so disenchanted at the moment. Like I've made no progress and have additional emotional issues to sort through from this experience. Bitten many times, and now shy!!!
I am grateful, however, for the wonderful support here. I've learned a great deal and certainly do not feel alone in this Posts: 38 | From behind the definitions | Registered: Sep 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
If I did not feel I was getting the appropriate treatment I would find a new llmd.
Dont waste time with someone who isnt taking care of you or is just watching you get worse or stay the same for no good reason
posted
April, 06, I just changed from a beginner LLMD since IOWA HAS NO FULL-TIME CHRONIC LYME LITERATE MDS in entire state.
I went to one w/2 yrs. experience w/fibro/chronic fatigue, and now lyme experience. She is a holistic one as well. So she had 20-25 tests done on me: endless blood, urine, saliva, mouth swabs, and BM samples galore. They are expensive, but if you can regain your health to have QUALITY TIME w/loved ones; what is money? You can't take it with you.
I'm waiting for ALL my results to come back; so far, have 2 labs with 10 more diagnoses!
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Fancy -- In short, yes. People don't post on it much, but many (including the hubby and me) have gone to recommended LLMDs and had very bad experiences.
All I can say is that we kept looking and asking for recommendations, and after 2 years of going nowhere (actually, went downhill in the long run) with one LLMD we found another one (2 states away) who has taken us from ground zero to much, much better. I almost had to take the hubby down to the new doc at gunpoint, he was so burnt out and disappointed (and sick).
Our current LLMD treats coinfections aggressively and is very supportive of alternative methods -- he doesnt consider himself an expert in them, but is working wonderfully well with our local holistic doctor.
NP40 is a great source of info -- do follow up with him and move on to another LLMD. I do know how discouraging it is in all ways to finally find someone who supposedly knows and can help, and then find out they actually don't and can't. (Although some patients still swear by this guy and do well with him.)
I really believe that some doctors--even the best ones-- do fine with some patients, but not with others.
It's a heavy load to carry when you're sick, but YOU have to be the one to overcome your disappointment and disillusionment, prod yourself in the buttocks, keep the faith, and pack up and move on.
Good luck
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thank you, fancykat, for starting this topic. (I'm having another go and was feeling kind of battered from past experiences and was wondering how to get past them.)
Thank you very much, minoucat, for posting exactly what I needed to hear.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Yes, thanks to all for the advice. As was said, it is extremely difficult to take charge when you can barely get out to the mailbox. It's easy to curl up in a ball and spiral into yourself, wishing that a doctor you are reaching out to will guide you to wellness. But I guess more often than not, that's not the circumstance.
This has most definitely been a learning experience! Regardless of the pile of @#$% I feel I need to process now on top of being ill, I continue to have hope that there IS help out there and I WILL get better. If not completely, at least well enough to handle what the days bring.
Glad to know I'm not alone in this.
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
i went to an llmd the first few months after becoming certain that i had chronic. he was an llmd, but never talked about co-infections, nor did he treat aggressively enough. i was fortunate to find the llmd i am seeing now. it's slow, but it's working...slowly (oops, i said that!)
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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posted
After finally figuring out what was wrong with me, after many years of no diagnosis and misdiagnoses, I went to a recommended doctor.
He advertised practicing "smart medicine", that is, incorporating nutritional supplements into traditional medicine. He was distracted and agitated at the first visit. And running late.
The second visit I waited for 45 minutes, but this seems to be normal for MDs. He was impatient, but efficient, noticed that his tech had sent a test to the wrong lab, and accused me of not getting the Lyme bloodwork done, when I hadn't gotten the order for the test or for the hospital to pull my blood.
He sold me $120 of vitamins.
The third visit he was angry. I don't know why. he FINALLY got me the test and the order for the Lyme bloodwork.
The fourth visit was unscheduled, because I was in so much pain. He was hateful. He tried to sell me an expensive detox-food allergy program. OH- and my Lyme test was negative. My symptoms weren't consistant with tick-borne illness.
The ride home was one of the low points of my life.
But I was more determined than ever.
I found another doctor. After three-and-a-half months of antibiotic treatment I'm not sure I'm making any progress. Today is not good.
But--like you, I am not giving up. Good luck!!
Posts: 353 | From Florida boonies | Registered: Nov 2005
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My first LLMD came highly recommended. At first, I felt like he was giving me my life back. But after a year, things went downhill and I realized that I needed to leave. It was a tough decision, but I did it.
I've been with another LLMD since and I couldn't be more pleased that I made the change.
This is a valid, yet sensitive topic of discussion. But I'm sure you know that you are not alone in dealing with this type of situation.
Good luck! Pea
-------------------- ~~~~~~~~~~~ I am SO not a doctor, just another lymie trying to sort out this mess, so, everyday I think... Obla di, Obla da... Posts: 552 | From Right here | Registered: Dec 2002
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