posted 03 April, 2008 11:09 AM -------------------------------------------------------------------------------- Hi - I have been on line here for less than a week. Boy what a comfort to see people reaching out to one another. I have been very sick for a long time, I have CNS lyme - for over 20 years - but have only had the correct diagnosis for less than 5. I was living with a MS diagnosis for over 12 yrs. My 3 children all have lyme and some co-infections. Last fall was the worse - I still don't know if I was experiencing mild strokes or seizures. CAT scan, evoked potentials and EEG showed nothing. I have severe encephalitis (Spect Scan). I was denied IV by insurance -Aetna. I handle all this quite well considering - and my story is not all that unique.
It is the isolation of this disease that is bringing me down. I have just learned that someone has been passing gossip that I have Munchausen syndrome. I am stunned. I don't want to care what other [/LIST] people think - but I do. Also this can really hurt my family. What if someone in the school system gets a hold of such gossip.
I don't know what to do. I have had many periods in the last 6 years when I could not leave my house, either bedridden or in too much pain or fog. My pool of friends has dwindled. I don't know if I should approach the person who casually mentioned to me that "to think you have munchausen's is ridiculous". I was too stunned when this neighbor said this in the middle of a conversation.
I am sorry this is so long - I was doing so well until this - has anyone ever experienced this and what should i do?
posted 03 April, 2008 03:22 PM -------------------------------------------------------------------------------- Hi CB, So sorry you're going thru all of this BS. One of the most debilitating things with LD is the isolation that goes along with it.
I've had it for over 8 years, in conjunction with thyroid cancer, which I still have. If it weren't for the cancer, most people would still think my health problems are all in my head. It makes you want to scream or punch someone, doesn't it?
If you aren't bleeding, people don't think there's anything wrong with you. I had a rheumatologist once tell me to "stop complaining and pull yourself up by your bootstraps; quit trying to be sick." If I'd had a gun . . .
If I were you, I'd get all of the printed material I could get about LD and hand it out or leave it lying around everywhere these "gossipers" went. Baseball games, soccer, etc. I once learned in a 12-step program that "it's none of your business what anyone else thinks of you."
Hold your head high, and be well.
I have CNS involvement also - early in my illness I had a seizure/TIA. If you'd like to discuss/compare, send me a private message. I don't know anyone else who had this.
posted 04 April, 2008 10:39 AM -------------------------------------------------------------------------------- Lyme and co's are so terrible. The hell wit what others say.
They can go to you know where.
I find that unfortunately that t he more you talk about being sick the worse people who dont get it or care act.
We know how you feel but unless it happens to them, people will not get it.
Lymenet is great for not feeling alone so come often and there is also a chat at 8pm everynight.
I have found it to be such a great experience. Please come by if you can!
-------------------------------------------------------------------------------- Posts: 1579 | From: USA | Registered: May 2007 | IP: Logged
njlymemom Flash Member Member # 15088
posted 04 April, 2008 11:43 AM -------------------------------------------------------------------------------- Thanks - I know that I shouldn't let it get to me. I should be use to this by now, but sometimes it makes me so angry.
posted 04 April, 2008 04:20 PM -------------------------------------------------------------------------------- cb,
the content of your post belongs in MEDICAL, could you copy your entire comments of your post and ALL REPLIES,
then go to medical and PASTE it all on a NEW POST found in black/white box at top/bottom.
go to lower left hand corner to mark box for all replies to go to you, and click send.
then come back here to seeking dr. forum, and delete this one here.
to do this; click paper/pencil icon to right of your name on your FIRST POST.
go to top left hand corner, CLICK DELETE POST; HIT ENTER, and it's gone from this board.
thank you. you will get more replies in medical than here!
-------------------- info purposes only;NOT CONSIDERED MEDICAL ADVICE!Info providedshould NOT be used replacing YOUR PERSONAL MD ADVICE.SITE LINKS are provided for EASY RESEARCH.Site Info is the opinion of those WHO publish the sites;NOTnecessarily that of Betty G.
-------------------------------------------------------------------------------- Posts: 14370 | From: Iowa, USA | Registered: Aug 2004 | IP: Logged
njlymemom Flash Member Member # 15088
posted 04 April, 2008 04:33 PM -------------------------------------------------------------------------------- oh Betty I will try...this was the first posting for me and I was not having a good day...the "feel fuzzy brain, not really seeing what i need to see" kind of day. After I posted this I realized the mistake. I will try to fix using your directions.
-------------------- 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
| IP: Logged |
posted
Thanks for the help Betty, and thanks again for the warm welcome. I sent you a pm a few days ago.
-------------------- 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
| IP: Logged |
posted
Hi, Oh Boy!!! This is one subject that really pushes my buttons!!! Being accused of munchausen syndrome!!??
May I ask how long you've know these friends?? Are any of them in the medical field?
I'm sorry, I'm really having a hard time holding back what I want to tell you to tell them!!!!
I had a similiar problem while living in Calif. None of the Dr.'s I saw knew what was wrong with me, and many said it was 'all in my head!' I also lost the closness that I had with my friends, which really hurts.
I moved to Ga. 5 yrs. ago. None fo my freinds here knew that I was sick. It was only 2 years ago that I was finally diagnosed and started treatment.
I would just stay home and avoid anyone when I was having a bad week. Well it got to the point where I couldn't hide it anymore. I started have the Bells' Palsey, muscle spasms and walked with a limp that I couldn't hide anymore. Because they wittnessed the symptoms before I ever told anyone, everyone has been wonderful!
It seams as though people have to see it for themselves, before they really believe how sick you really are. Very sad!!!
Now most of our friends have witnessed it all, accepted it and respect my wishes to just ignore it unless I hit the floor!!!
Keep in mind this is a touchy subject for me!!! I would find out who said it, and talk to them about it!!!
I've been know to say, " I would never wish this disease on my worst enemy! It's especially hard when the people who have known you for a long time don't even understand!!" This was is casual conversation, but they got my point!!
I also told a Neurologist once early on in my disease when she said that there was nothing wrong with me, and that I should see a Psychriatist. This was in her office and she had a picture of a baby girl on the wall. I asked her if that was her daughter. She said yes. I then went off, which was not like me, but I had had enough!
I started crying and looked at her and said, " What would you do if it was your daughter that was sick???? Would you just give up, stop looking deeper, refuse to research the symptoms???? She replies with, " I would tell her the same thing!" I told her that I find that very hard to believe as you know your daughter well. You spent 30 min. with me, know nothing about me and you try to diagnose me with this!!!!!! I stood up as she was trying to walk out, got in front of her and said, "I pray that none of your children become ill. If they do, I pray to God that they never see a Dr. like you!!!
She was quite angry!!!! I really didn't care. My hope was that she would think about it, and take the patient more seriously!
Sorry, I really didn't mean to vent!!!! It's just makes me so angry when friends, family and Dr.'s do this!!!
I'm so sorry that you had to go through that!! NOBODY knows what you go through unless they've walked in your shoes. Who ever said that really just made a fool out of themselves! It comes from nothing but ignorance!!!! In a casual conversation, I would make some sort of comment that only they will know what you're referring to.
As far as your ins., Please fight it!!! Go all the way to the top. Request a hearing!!! Don't give up---Please! I have neuro-Lyme too, and it's so hard! I also passed it on to my children! So-----Get angry, not sad and fight this. You can win. Threaten them with going to the media, every local news station, newspapers, etc..... You can do it!!!!
Thinking and praying for you and your children!
Posts: 351 | From Georgia | Registered: Feb 2008
| IP: Logged |
posted
I have a feeling I know who put this gossip out there. She happens to be a nurse practioner and thinks very highly of herself.
When my head clears - this doesn't happen all too often - I will approach the topic. My sister, who has been a diabetic for over 50 years (she was diagnosed at age 4) had a similar problem when she retired from teaching. She had to retire because the diabetes has taken its toll on her body. (Her neuro problems and mine are similar). Someone passed gossip that she was retiring because of a nervous breakdown. I know that people with other illnesses have the same problem we face at times. The "oh, but you look so well" response. I think that most of us have confronted this. But it is different with lyme. At least with diabetes, my sister is not told that it is all in her head and she should see a shrink.
I know how you feel. I had similar experiences with docs for many years. I almost believed them, but then fought back. Oh, yes I have yelled at docs too. When my daughter lay in my arms not responding (age 7) in the doc office and he insisted that she only had a virus. Well I yelled at him that I wasn't leaving the office without a script for doxy....that I was sure she had ehrlichiosis. He handed it over, and a script for blood work....and yes I was right. My llmd's love this story.
I have been strong before, and thank you for letting me vent! What bothers me most about this is not that they don't believe me....been there for years. This sort of gossip can really hurt my children....I have fought for quality of education for them. The school system sees me as a hysterical mom....and I really don't care as long as my kids get the help.
Thanks again to all of you. This whole thing really set me back this week. And on top of it my 13 year old has had a set back. I know this will pass....we have been here before.
Prayer works.....
I pray daily for my kids to heal and be strong while doing so
I pray for my husband - he is a great guy
I pray for our docs - for the llmds who are there for us - and the quacks to see the light
I pray for the undiagnosed- for them to get help like we have
I pray for our legislature - a mountain peak can be reached with small steps
I pray for all of you - I wish I had logged on here years ago you have been a comfort
I pray for friends and family - may they never experience this -
I pray for me - to be able to forgive those who have hurt me - to move forward - to be able to see my children grow well into adulthood
Amen
-------------------- 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
| IP: Logged |
posted
You know, I don't really care what other think ... generally speaking, someone who doesn't "like" me is someone I don't really care much for anyway. Usually the feeling is mutual.
However, with something like munchausen, I worry about munchausen by proxy because one of my kids has Lyme.
It's seems though that the neighbors may be on your side, not the nurse practitioner's side. The one who talked to you anyway, seemed to think it was ridiculous that someone thought you weren't really sick.
Did you and your family get Lyme where you live now? Perhaps you could pass out some Lyme awareness info ..... that might help educate the gossipers. It would not only educate them on what's wrong with you, but also how they can protect themselves.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Just yesterday, a friend called to ask for info to pass onto someone else who has a daughter struggling with fibromyalgia. It took me by surprise, I did not expect this from this person. I took it as a sign that people are listening.
I know change does not happen over night.
-------------------- 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
| IP: Logged |
adamm
Unregistered
posted
One particularly bad human being, a Dr. Edward McSweegan,
accused every mother to claim her child has Lyme of
posted
Honestly, I'd probably find a lawyer to write this person a letter regarding the potential for a defamation of character suit. I don't know if that's realistic, but man that's horrible.
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
| IP: Logged |
posted
I know that when my mind is working better that I will be able to handle this whole thing - but this infected head doesn't work all tht well most days.
I love the quote and added it to my file....
-------------------- 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
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[cussing]](graemlins/cussing.gif)
![[Cool]](cool.gif)
Printer-friendly view of this topic