I was reading through the "worst thing" a doctor has said...and thought we might share some of the great helpful things that have helped us get through.
My favorite is when I was still working with my PCP "well, they treat for one band in china...So let's try it" And a week later when I was in because I could not walk and felt 100 years old, with a huge smile on her face..."you're herxing,that is so good!."
That was the beginning of my journey... But I love my PCP because of it.
And I love when my llmd says "you gotta live.". Usually when she is giving me a protocol that is easily followed. But sometimes when I admit to a a glass of wine.
Compassion is a lost art in medicine, it's nice when you have a team you like.
Any wonderful lines or advice that stands out from your doctors?
Posted by chastain (Member # 34236) on :
I had a doctor (who wasnt even a LLMD) and who longer practices medicine due to some personal issues call me up one night.At the timeI was honestly suicidal over being so ill and not being believed and he told me -"You aren't crazy, you are sick. You are doing the right thing by fighting for answers -you are trying to save your own life. Giving up isn't an option. You have to be your own savior. No one is gonna do it for you. Just keep fighting."
He stayed on the phone with me for hours that night until I felt safe. I will never forget the compassion he showed me. I will take a bullet for that man for reaching out and believing me when no one else did. Jess.
Posted by soccermama (Member # 35101) on :
I have been trying to find a PCP locally who would support my LLMD. My current PCP was not very helpful.
I had an appointment two weeks ago with a doctor who specializes in internal medicine. While he thinks I may have an autoimmune condition, he acknowledged that I was infected.
He also thanked me for coming to see him. He said that there is a saying in diagnostics that if you hear galloping think horse not zebra.
However, he said that I was a zebra. He is going to contact my LLMD and try and coordinate a plan.
In this year long journey, he is the first main stream medical doctor who believes that I am battling an illness and actually wants to help me.
Like Chastain posted, it means alot when a medical professional expresses compassion.
Posted by lpkayak (Member # 5230) on :
"i cant promise to cure you, but together we can try to get you feeling better"
if an llmd says he will cure me...i run.
and my last pcp reprimanded me and said "you are NOT a zebra" and explained the horse / zebra thing...
Posted by joanthebone (Member # 38407) on :
The only positive thing anyone doc has said to me, and I have seen many, was from my chiropracter who manipulates my back and neck. She was listening to my woes and she said I can order the Western Blot for you and I am so sorry that you sick! It was the nicest thing anyone has ever sad to me in the medical field which validated that I was indeed sick!
Posted by willbeatthis (Member # 31111) on :
I had a holistic chiropractor tell me I needed to rebuild my gut. That was key to my healing beginning... I did the GAPS diet and ever so glad I did.
Posted by seibertneurolyme (Member # 6416) on :
Hubby's LLMD told him to ignore everything the standard AMA docs told him. Told him that if the doc was not trying to help not to listen to them. Said that he needed to listen to his treating docs and ignore everything and everyone else.
Now if I could just get him to listen.
Bea Seibert
Posted by PatriotM (Member # 38493) on :
...is there a time limit?
In all honesty, one time I smashed my finger under a 400 pound piece of steel (it looked like hamburger) and the doctor correctly identified the problem as a "burst laceration". Regular MD's are GREAT at identifying the obvious.
Posted by tickled1 (Member # 14257) on :
After wasting almost a year with a PC that was ignoring how very sick I was I finall decided to switch.
The new PC ordered Mycoplasma testing based on my symptoms. After it came back positive he put me on a short course of Doxy.
After that course I was still through the roof positive and I presented him with literature on Garth Nicolson's long term treatment of Myco and he said "let's try it".
He then proceeded to send me to a Lyme doc b/c he said this happens with Lyme Disease. I am so grateful for him and so disappointed that he is no longer a PC. He is now a hospital doc and I'm grateful he was my PC for the short time that I had him.
Posted by TF (Member # 14183) on :
I got to ask Dr. Burrascano a question at a lyme conference years ago. I asked: What do you think of a case of a patient on high-dose antibiotics who develops trigeminal neuralgia?
His reply was, "If the treatment is inadequate, the disease will continue to progress."
That told me to find a different lyme doctor. This doc had had me on only one antibiotic (at a high dose) for 2 years. I learned it was 2 years wasted.
I switched doctors and got rid of my lyme disease and coinfections! That was over 7 years ago.
Posted by Razzle (Member # 30398) on :
A very, very astute allergy doctor said, "You have sulfite sensitivity."
He figured this out within 15 seconds of looking at my list of "food intolerances".
Once I started learning more about sulfites, this lead me to methylation issues, which started to explain to me why these foods did what they did to me. It's all about sulfur, for me. It even explained why I broke out in hives from Mt. St. Helens' ash! It all comes down to sulfur!
This is actually a bigger issue than Lyme for me...so yes, I'd say this is the most important and helpful thing any doctor has ever said to me. --
The second most helpful thing any doctor has said to me is "Let's run a Lyme test." When it came back positive (IGeneX), the doctor diagnosed me with Chronic Lyme. I didn't have a clue what Lyme was all about until he wanted to run this test. And I'd seen over 100 doctors prior to seeing this doctor.
Posted by payne (Member # 26248) on :
my lifetime MD, brought me into this world 55 yrs ago.. knows my strifes and gate.. knows my body better than I do ... a very wise ol'owl and has brought my family through many deseases and infections and all... stated .. I am so Glad you found what I can't, and you Have a LLMD that cares for you.. as Its against the law to treat chronic lyme... or have insurances pay the way for your recovery.. Its a shame our medical leaders don't trust me with the knowledge to treat you as we deem needed. I continue to this day to see him as my best 2nd opinion. The ER hates him, the Network of doctors hate him and He is my friend for life.
Posted by twicebitten (Member # 5412) on :
The best one I can think of is always "You are not crazy!", and "there is definately something wrong with you". Oh and my old PCP once told me that the docs who called me nuts were just insecure and because they couldn't figure out what was wrong or what to do, they blamed me and called me nuts.
Posted by RLC (Member # 38086) on :
I told doc I'd like to live at least nine more years, because of my 2 dogs ages. and as I was leaving he said " I think you should get a puppy" nicest thing said to me in long time.......
Posted by Kudzuslipper (Member # 31915) on :
I love these stories!!!!
Posted by hiker53 (Member # 6046) on :
"Go and live your life." Even though I was not totally well, this advice to get out and enjoy life as much as possible and not always think about lyme was great advice.
Another doctor and his nurses prayed with me. How refreshing.
Hiker53
Posted by Lymetoo (Member # 743) on :
Hi, hiker!!!
Yes, things said to twicebitten and hiker were things said to me by my LLMD.
My PCP used to be a hospitalist AND took care of patients at his office. (he never had the time, though, trust me)
The past few years he has only had his own patients to worry about and it's so much better!!
He has never doubted a single thing I've told him, and neither did my LLMD.
Actually, my LLMD suggested that I see the PCP, but for years he was not taking new patients.
Not being doubted is worth its weight in gold.
PS.. and not only that, my PCP's staff are wonderful and will bend over backwards to squeeze me in when I need an appointment. The nurse is GREAT.
Posted by birdie67 (Member # 35994) on :
My Doctor told me to keep believing that I can heal. He told me that our bodies are meant to heal.
I keep hanging on to that and repeat it several times a day to myself. Makes me feel better Posted by Haley (Member # 22008) on :
"Anything Can be Cured"
When I first found out I had Lyme I didn't know anything about it. My PCP told me there is nothing that can be done for Lyme. I was so discouraged.
When I landed in my now LLMD's office (he didn't really treat Lyme at the time), I asked, "can this stuff be cured", He said, "anything can be cured". That was my first glimmer of hope. He also told me it would take a long time to treat, so I knew the road would be long.
Posted by Pony (Member # 32559) on :
"Anything can be cured"
"Go and live your life"
FAVS!!!!
I went out and hiked today and feel better! It feels so good to get out! (realizes everyone can't do this, here's to hoping we all can soon)
prayers Posted by Dogsandcats (Member # 28544) on :
Nothing to do with Lyme.....
I have always been a hearty girl, hated to be weighed at the doctors. I would refuse the nurses request to get on the scale.
Older doctor would come in and I would reiterate no scale and he would say.... " I love voluptuous women " How nice to say instead of ragging on me about eating Bon bons all day
I immediately jumped on the scale....
Posted by Lymetoo (Member # 743) on :
Dogs!!
Posted by payne (Member # 26248) on :
nice words from above, encouraging and rewarding, All Things ARE possible with God !.. set your mind on this and your body will follow. Heal.. restore.. invite God to Help !
Posted by sillia (Member # 23994) on :
I was being treated for severe allergies and my allergist told me I should not have cats. I reported this sadly to my PCP (an internist) and he laughed, and said "It's well known that people with pets live longer." That was the nicest thing a doctor ever said to me and warmed my heart.
After that, I just didn't talk to the allergist about the cats. I figured it was too much information for him, LOL.
Posted by lpkayak (Member # 5230) on :
RLC...i like your doc
Posted by cozynana (Member # 34270) on :
Early on in the game of Lyme my PGP told me, "I don't know what you have, but we will try to make you feel better even if we don't ever figure out what it was". This was very compassionate thing for this Dr. to say, not her nature.
Also another one said to me "you are not crazy, this %$#@ disease makes people think they are crazy."
How about the urologist that finally diagnosed me after 48 or so Drs. I was in her office for cystitis and she said. You have cystitis but I am more worried that you have Lyme. Here is how you are going to find the right LLMD. Read this list of books and don't listen to the regular Drs, they know nothing about Lyme. I asked her how she knew I had Lyme and she said "I have three friends that act just like you, they have Lyme". She was right on the money.
Posted by Liz D (Member # 16739) on :
Here on Vancouver Island we still 'dont have lyme'. GRRRRRRRRRR After 25 odd years of health issues my GP sent me to a phsychiatrist (sp). who reviewed my considerable file, talked to me for nearly two hours. He then said that the only thing wrong with me is that I have untreated lyme and that my GP 'better get on it'. I could have kissed him. Next appt with GP got doxy and an apptment with ID doc.
Posted by ladycakes (Member # 12619) on :
Told my doc that the last guy thought I had fibromyalgia. He said "That's a garbage can diagnosis."
I could have hugged him.
Posted by Keebler (Member # 12673) on :
- After a couple hours of short but intense seizures, the EMTs who had to carry me down the stairs in a sort of lawn chair to the stretcher below waiting by an ambulance -
well, when I told them I wanted to walk down the stairs since I weighed (too much - I was totally honest with the figure) well, one of them nicely said, "oh, that's nothing. that's a lightweight in this town."
They said with all the spastic flailing my body was doing they didn't want me "flying off the stairway"
In retrospect, for their safety, I should have never agreed to be carried down though. I should have sat on my backside and eased down step by step. One of them could have helped me but it would have been safer for them. I worry that someone got injured in that transfer.
I tried to think "light like a feather" but I could tell by their grunts it was not working. Still, they were very kind.
[Much kinder than the hospital staff who kicked me out of having more seizures and thought I was faking.]
Back to the EMTs, though.
Well, I'm not sure that was the same poor guy on the lower end of the chair as his face clearly showed the strain - but no one made me feel terrible for my weight.
I hope they know that I've always had the very best habits i could but this illness just clobbered the weight stuff. I will always remember their kindness.
Posted by Keebler (Member # 12673) on :
- Different ER, different year, even. While researching lyme in a hospital patient education computer center, a seizure hit and so the ER team was called.
In the ER, someone at the computer center had told them I had CFS so the doctor then started to yell at me. First, very calmly asked:
"So, doesn't it make you wonder that no doctor has been able to figure out what is wrong with you?"
I said "yeah" hoping that, maybe, he would have a clue.
Then, chiding me: "Young lady [that was years ago], it's about time you stopped faking this and grow up. Nothing is wrong with you. There is no such thing as CFS. You'd better stop that act right now."
About then, another overhead announcement went off and I flew into another seizure. That did not sit well with the doctor but they did give me a saline IV and that helped.
The nurse, a guy as I recall, softly said to me after the doctor left: "Don't feel so bad. You know, we're all just wired differently"
that helped so much as I'd been so crushed by the doctor. A bit later, as I'm preparing to call a taxi to go home, that nurse came back with all my research notes that I'd tossed to the floor when I flew off my chair in the computer station.
LYME was clearly all over my notes, so he could see that I had been researching that. I hope, perhaps, that he was able to learn about lyme and prevent this in others.
I will always remember the kindness of that nurse. -
Posted by Lymetoo (Member # 743) on :
I saw my PCP today and he said another patient of his was telling him how badly she was treated by another doctor.
He was totally shocked and couldn't believe a doctor would say those things to a patient. I said, "You should read what I read on the Lyme disease board everyday." I told him that people are told horrible things and it was disgusting. He just shook his head.
I told him how others are told, "You can't be sick, I gave you 3 wks of abx for the Lyme. You are well now."
He shook his head and said, "That's crazy!"
Posted by fatherguido (Member # 25266) on :
My first LLMD appointment when I was really sick. That visit was actually doctor appointment #14 to try and identify identify what was making me ill. His words were "I am confident you will get better" and that set me at ease.
My last appointment a couple months ago was "I am very proud of you" referring to the progress I made.
Posted by Pocono Lyme (Member # 5939) on :
When I first saw my now PCP he told me I had serious central nervous system issues but had no idea what was causing them. Not MS, ...
He then said it's definitely not psychological. I felt so relieved as I had considered seeing a psychiatrist on my own.
When I told him I thought it was lyme he said we certainly have all the prime conditions for it but doesn't understand why we don't see lyme.
He told me he has had patients say they had a history of lyme but had only seen two "true" cases of it. One in Canada and one other in the states.
Most recently, 8 years later, of course with me supplying him information, not always readily accepting of, he told me he treated 3 women for lyme. yay!
He said now when he gets any patient with sudden onset dementia, he now suspects lyme. All 3 lit up on their western blots and had lesions on their brains on MRI. He previously hadn't accepted my reporting of lesions on the brain with lyme often misdiagnosed as MS.
I'm so proud of him.
Posted by baileypup (Member # 22824) on :
I had been feeling lousy for a year or two, although diagnosed with CFS years before. Then, had sudden onset of left leg swelling and pain and was limping all around. All I could think of is, where did this come from?
During this time, I had a cyst on my back that was cultured as e-coli and treated with amoxicillin. What do you know...the leg pain and stiffness resolved. That's what led me down the antibiotic path....
I set up and appointment with a well-respected Rheumatologist, but it was months off. In the meantime I had an appointment with another Rheumatologist and told her that my leg pain was relieved by antibiotics. She said, "I have people come in here all the time with fibromyalgia, and give them antibiotics for a UTI and they say it resolves the pain in their shoulders." Can you believe that? No ---- Sherlock!
My appointment came with the fabulous Rheumatologist and he was CONVINCED I had infectious-based arthritis. He spent two hours with me and connected the dots which led to his acknowledgement. Unfortunately, he sent me on to an infectious disease doc, who laughed me out of his office...twice. But, I will always be grateful for this Rheumatologist and his acknowledgement and belief that this was indeed an infectious-based illness and that I was not crazy!
![[dizzy]](graemlins/dizzy.gif)
prior to seeing this doctor.
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[lol]](graemlins/lol.gif)
Dogs!!