Hello Bettyg, I am a 50 year old lyme patient. I recently found out that 2 of my three
kids, 20 and 19, have lyme and the third, 17, is being retested this week as he only had the
41+++ band showing. I started going to Dr. M from Fond du Lac. I was going to go to
Dr. W in Baraboo, WI, but Dr M felt my case was too severe for the new doctor as my
neurological problems were so advanced and he said he would see me instead. He is full so I
see the PA G. I have been receiving oral antibiotics and suppliments since 7/17/09 and
and my daughter started oral antibiotics and suppliments 9/1/09. The boys were scheduled to
see PA G 10/15/09 when I was going in for my third doctor visit. After my second visit to
the doc. they added some new suppliments. Two weeks later I got terrible diarriah. I waited
for two weeks to see if it would ease up but it only got worse so I called the office 9/24/09.
They told me to stop all suppliments and antibiotics and go on a clear liquid diet for 24
hours then start eating cream of wheat. I questioned them as they had me on a no wheat,
sugar, dairy, additive diet and wondered if I should do the BRAT diet till things firmed up.
They said no. I did as they said but things did not improve so I started with the rice cakes,
bananas, homemade applesauce with no sugar, and ezichial toast no butter. Things firmed up some
but I was having bad stomache cramps. I called the office monday morning, 9/28/09 and
explained I was still experiencing complications and they told me to get a blood test and stool
sample to see if I was dehydrated or had an new infection. I told the office manager I wanted a
second opinion from Dr. M. She told me to start the BRAT diet and I said I already had. I
have not met with Dr M in person so he could not give me a phone consult and he was out sick but
they would try to get me in to see him asap. I did the testing and had the results sent to
them. I asked what I should do about my antibiotics and they said to wait.
My daughter's second visit was 9/29/09 and I went with her as did her boyfriend and my
girlfriend. While we were there we discovered there had been a miscommunication about her
blood work. We had asked the doctors office to do the testing and they thought we were getting
the testing done ourselves. We also discovered that the doctors office forgot to order a
coinfection test and they were concerned it was too late as she had already started antibiotic
treatment. We asked about the flu and H1N1 shots as she is in college and we were told she
should just up her level of vitamin D, wash her hands and eat good food. I told them she was
not on any vitamin D. They added 5 new suppliments to her list and said they would
follow up with her during her next visit. After all this I asked again about starting up my
antibiotics as I was concerned it was getting to be a long time off of them and I know that is
not always a good idea. They said I should wait for my stool test results. I called the office
this morning because I was notified by the lab that the test results were in for the stool
sample. It was then that I found out that they had sent a letter out to me and they would not
talk to me on the phone. I asked again about my antibiotics and they put the office manager on.
She informed me that Dr. M decided to drop me as a patient because I upset PA G and the
nurse. She admitted that I had not been loud or swearing but that my questioning my daughter's
blood worked seemed like I was being acusitory and they decided that was unacceptable. I was
floored. I asked what I was suppose to do about my treatment and she said that the office
doesn't have me on any antibiotics right now so I am not officially being treated so they can
drop me as a patient. I explained I was only taken off the antibiotics because of the
diarriah and was waiting for the test results. She repeated that they will not see me and that
they are not administering antibiotics right now. They sent a certified letter that also
announced the office would not see my boys. I called and asked about my daughter and because
she is 19 and under antibiotic treatment that they would continue to see her. They can't drop
her in the middle of treatment. The office manager is sorry it turned out this way but they
have to be careful of litigation. I told her that it could take months for me to get into a
new doctor and I had no intentions of getting anyone into trouble. I told her I was sorry for
questioning anyone about the blood tests but she said it is out of her hands.
I guess I am writing to you because you seem to be like a head person on this site. I do not
want anyone else to start treatment and then get dropped midstream because questions are asked.
I know Dr. M is an excellent doctor. I also know that the PA, G is very new and is
just learning the ropes. She will get into the swing of things as time goes on, but until then
other people may run into this same problem. This has put my health at risk. Starting
antibiotics and then being abruptly removed from them is exactly what causes long term and life
threatening complications especially someone like me with severe symptoms.
Do you have any advice?
Thank you,
J C
PS I have decided on a path for the research I want to start. I want to focus on all the kids
with psychological problems like my two older children who were never tested for Lyme before
being put on ADHD and Anxiety meds.
Posted by JamesNYC (Member # 15793) on :
Wow,
I'm sorry to hear of such treatment by a LLMD's office. I would think they would have a more professional attitude and understanding when dealing with ill people.
Your story should be added to the comments for Dr. M in our Seeking a DR forum.
James
Posted by Lymetoo (Member # 743) on :
Sheesh. If you need more drs' names, let me know.
Posted by momofthree (Member # 19490) on :
JamesNYC I don't know how to post to that forum. Going to see Dr. C in Mt Kisco next week
Posted by bettyg (Member # 6147) on :
mom, glad you posted here after we talked privately. Posted by lou (Member # 81) on :
Lymies have so many problems, many serious because they were not diagnosed at an early stage. This is really hard to cope with, both for the patient and the doctors. The doctors have no backup from specialists, no help from research, and are in fear of losing their licenses for treating us.
So it is understandable that they might lose heart, want to dump people. This has happened to me. And the dumping was not always handled well, very seldom was, in fact.
Patients have to have a lot of self reliance, and find support elsewhere from lymenet, support groups, etc, so the whole load is not dumped on an already-overwhelmed doctor.
Not passing any judgment on what happened to you. Hope you get the help you need.
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