posted
My son has been very ill with Lyme for 7 years. Through the years I have taken him to dozens of Drs. We were put down so much for the idea that he might have Lyme disease. We have been told that I am making it up for attention for myself, that he just needs to lift weights and get fit, to the LLMD are just quacks.
Lately, things have worsen with his health as were are inbetween drs. He is in severe pain on a daily basis and needs pain meds. In trying to find a safe solution to the meds we were told by our local dr. that "we just need to accept things", and he should grin and bare it.
We just had an 2nd appointment with a pain specialist today who started my son on Methadone 10 days ago. Feeling uncomfortable with this after reading more about it, I had questions to ask about a safer alternative. I was told by the dr. that he had "made his decisions and we were to follow through with it, because he was the doctor". If I wanted to ask about another med, then I needed to make another appt. and we might be able to discuss it. He then went into how he did not feel that I should be in the appt. with my son. We both left in tears and angry how he talked to us.
We seem to be getting so many negative responses and encounters that it is getting harder and harder to pick ourselves up after. Depression is ever present as is underlying anger at the ignorance and rudeness of health care professionals.
I know that many of you have experienced this with drs. How do you keep going? Sometimes my son has to go to a reg. dr. and how to explain his history without it sounding like "quackery" ( especially if out LLMD has been using muscle testing) ?
One of my son's symptoms the past 7 years has been heavy brain fog and cognitive impairment. I go to his appointments with him to be the one to ask questions and keep track of all the information. He now is 18 and we are getting rude remarks about that. My son would not be able to handle it himself. Any parents out there that have experienced this?
It was another bad day and I needed to write. Thank you for listening and hopefully someone will have some ideas that we can try to get through this ordeal mentally. J
Posts: 38 | From Seattle | Registered: Nov 2008
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I don't think we can win with the doctors who are opposed to discussing or considering Lyme.
Posts: 13171 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
mom, that stinks big time! i'd turn that guy in!!
make sure you get copies of all medical reports, labs, xrays, etc. by signing a RELEASE OF INFORMATION to obtain these things.
read them thoroughly and ALL WRONG INFO, write up a REBUTTAL to each wrong comment, and give to records dept. they have to put that in his file.
if ANYONE WANTS HIS RECORDS, they have to send your rebuttal w/drs. original medical notes.
now, you are blessed to be living in seattle and washington where you have the MOST LLMDS nationwide!!
check your profile; i'll send you seattle and your half of the state now!!
you have alexis, wash. support group leader, to thank for recruiting so many llmds !!!
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posted
Hi My son was seeing a real good LLMD, but we had to cancel one appointment (3 hour drive for us) First one cancled in 2 years,and we were going there on a monthly basis. The irate office manager/clinic owner told us that if we canceled, that we were no longer allowed at the clinic, or we could pay $420. This was 8 days prior to the appointment.
I was stunned and told this person that I was not aware of this policy. Turns out there was not a record of us being told this in our files, and in order to get my son's medical records now, I need to sign the papers stating that I knew this. Blackmail.
You see my frustration, lack of trust, etc. Thanks for letting me vent.
Posts: 38 | From Seattle | Registered: Nov 2008
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posted
Wow. If you didn't know this policy, they shouldn't hold it against you. Eight days prior notice? Seems to me they had plenty of time to fill that appt. We need good LLMDs, but they shouldn't treat you like that.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I am so sorry that you are experiencing this.
Finding a compassionate doctor is a battle. It took a long time for us to find ours. I understand what you are saying. We still need to consult with the local doctors for "run of the mill" issues. It is extremely stressful.
I have an older child. She is doing so much better now. However, I still consult with our doctor with her. Eighteen is not an adult, not when you are sick.
You are doing the right thing for your son. As far as your question as to how to keep going, I don't have an easy answer for you. I have been there many times. No matter how much pain I am in, nothing scares me more than to see my children struggling with their health. Nothing makes me feel more helpless and alone. It is an uphill battle, and we take a small step at a time. We do it everyday. We don't have a choice.
In the end it will make a difference. Don't give up hope. This is easy for me to say today, but tomorrow I may be back where you are. So when things are good, I capture it and hold onto it, and treasure it.
What happened with the doctor's office seems excessive. If this doctor has a voice mail that he checks, I would leave him a message. This doctor may not be aware of how aggressive his office manager is being.
Good luck, and Hugs
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
Sounds like you are a good mom, just trying to take care of your kid. It doesn't matter if he is 18 and legally an adult, if he wants you there, you can be there and no one should question that. We all know that you aren't trying to supervise or control him.
I'm only 23. I've had my mom with me for doctor appts up until about a year ago when I moved away from home. This was even while being married when my husband couldn't come to my appts.
You should be able to be there with him without being hassled. A doctor that would not understand that should probably not be his doctor. I've told doctors this and left their office before.
I hope you find a good LLMD who really cares and understands the limitations of this disease.
Posts: 236 | From Washington | Registered: Jul 2008
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I'm a jmom too (Jake & Jordan)! My sons are 18 & 22 and I go with them to most appointments. I always ask them what they want & they want me to go with them. I've only had a few comments from nurses but I don't care. The nurse doesn't know anything about my son.
We do go to a good LLMD. That would help solve some of your problems.
Did your son try the Methadone? Our LLMD prefers something like that for long-term pain. The pain clinic also talked about it. I've heard it works well for same types of pain.
Does your son take an anti-depressant? Some people need them.
After 10 years of dealing with this illness, we finally have a good core of doctors. We have taken our kids to highly recommended doctors and they have not been treated well.
I'm surprised the LLMD office won't reschedule an appointment canceled so far in advance. Have you talked to the LLMD directly?
My son is seeing a therapist. They leave a voice message to remind him of his appointment. They give the speech about canceling the appointment with less than 24 hours. I think their patients have enough problems already without worrying about not being able to see their therapist again.
If we have to go to a regular doctor, we don't bring up Lyme unless we have to.
Good Luck!
Peggy
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Jmom,
I can definitely relate to your story and I'm an adult in my 50's and STILL was treated this way.
I went five years undiagnosed and since by the end, I couldn't walk or talk anymore, my husband was with me for all of my appointments.
With lyme and co's there is so much brain fog that you definitely need that other person there to help you remember things. no matter what your age.
I'm sorry you had a bad experience with a LLMD. Luckily for most of us here, that isn't the usual case, so my feeling would be to search out for another one. You can post over in the finding a doctor section for other options in your area.
Sadly, the majority of the doctors still don't get it and prefer to try to make us feel like we must be making it up or it's all in our heads and we are crazy.
Hang in there, continue going to appointments with your son and try to shake it off when you get ahold of a egotistically doctor that knows it all since he KNOWS there is no "lyme disease".
Good luck and please keep fighting. We all have to.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I am 158 years old,,,was born between the invention of 'dirt' and the 'wheel'!!!
Anyway the BEST LLMD appointments I had were taking others like RN daughter along,,,its educating to THEM as well as helpful for you,,,,KEEP GOING!!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Thank you to all for your support. WOW, it made me feel so good to hear you talk about your similar experiences, especially as a mom or a child that has her home along in the appointments :-) It validated what I know is right, but gets lost in the shuffle of ignorant Drs.
I did let our LLMD know about the manager, but there was nothing that he could do he said.
Today we drove 3 hours to Seattle and had 2 appointments with people that are helping my son and support what he is going through. It was so refreshing , and help to get us on track. It is baby steps isn't it?
It was an 11 hour day and I am exhausted, but I wanted you to know how much your comments meant to me. THank you, J
Posts: 38 | From Seattle | Registered: Nov 2008
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posted
I suggest writing him a letter explaining to him that you've chosen to go elsewhere because of this policy.
That you've been seeing him for a while - ie, an established relationship, had to miss one appt, did not know about the cancellation policy, which is a bit severe, since I'm sure they could fill the slot with eight days notice.
Posts: 13171 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
jmom, glad you made some progress today in spite of the very long day!
no one deserves to be treated that way, and i would not stand for it!
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