posted
My adult daughter who has two young children has recently been diagnosed with acute chronic lyme. She had been symptomatic for 2years and bounced from one specialist to another with no answers.Even with positive test results we tend to doubt if any doctor really knows for sure what is going on.
Every bone in her body feels broken. Every joint is enlarged and inflammed. Her weight gain is through the roof. Her energy level is nill. Her organs are out of sync and I'm not sure if the brain fog is from the disease or the narcotic patch and 24 pills a day she ingests.
As she slowly deteriorates the frustration mounts for her as well as the family. It's so sad that my 2 year old grandson relates my visits as "shot time" (I give her B1 & B12 shots daily) My 10 year old grandson who had a full active relationship for 8 years with his Mom now finds himself with much more alone time. It's so sad to watch the kids long to play with their Mom who can now hardly hold her head up. Her husband cannot grasp what is happening. He has no faith in doctors and often claims they have made her a hypocondriac.
As her mother, I feel her pain and frustration 24/7. No matter how old your children are a Mother never stops worrying or questioning how can I help? What can I do? If anyone has any suggestions they would be greatly appreciated.
I pray for every person afflicted with this devastating disease. I wish you all relief from your pain and suffering. I look forward to messages from those who beat lyme to help encourage those who are fighting the fight. And I anxiously await the day a better cure is available for all who need it.
God Bless you all.
Posts: 10 | From michigan | Registered: Dec 2006
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How wonderful of you to come here to learn more about lyme disease on behalf of your daughter. you are already on the right path Learn as much as you can and you will be a wonderful advocate for her. Involver her husband in the learning process too. If he doesn't have time to do research, find the information for him, print it off, and give it to him to read.
If she does not have a lyme disease specialist that is recommended by your state's Lyme Disease support association then she needs to find one.
Your daughter will need lots of support to get through this. Since she was misdiagnosed she will need longer treatment with chronic lyme. What she needs most from family is support right now. She needs you to understand that she is NOT a hypochondriac and that her symptoms and pain is real. She needs you to understand that she will have emotional ups and downs and that she will not get better overnight. Everyone in the family will need to be extremely patient. Explain to the 10 year old that the mom doesn't want to be like this and would rather be playing but her body is sick. Explain to the 10 year old that mommy needs his help now more than ever and develop a list with them of things they can do to help out.
Ask her right out how you can help. She knows what she needs and she will be more likely to accept it from her mother than anyone else. She probably could use someone to help care for the 2 year old because she needs lots of rest. If you could find out more about the yeast free diet and then cook and freeze some meals ahead of time for her that would be helpful. She needs help cleaning and she may or may not ask for it. Depending on her cognitive status she may need reminders about important dates, events, etc.
If she doesn't have child care inquire about programs that offer things like parent time out or respite care so she can have a small break. Lyme can be expensive to treat also, so she might need some guidance about seeking financial assistance from community resources. Do the homework and legwork for her.
Get the book "Coping with Lyme Disease" by Denise Lang.
Most of all, tell her you love her and support her and believe her.... often.
-------------------- Some day, this mamma's gonna dance! Posts: 199 | From here | Registered: Apr 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
She needs a lyme literate dr (llmd).
If you go and post in seeking a dr someone should be able to find you one. You may have to travel though.
Lyme literate drs are hard to come by.
Please make sure your pm is enabled because we do not post drs names or info on the board.
posted
great write up mom and welcome to the board!
I'll send you 21 pages of newbie links/advise, etc.
In there be sure to look for UNDER OUR SKIN DOCUMENTARY, and try to view the "trailer" 30 minutes which shows/tells about chronic lyme patients! I haven't been able to view it; I have dial-up; available only for HI-SPEED INTERNET!
If you can get it, would be great for your daughter's husband, older daughter, etc. to watch so they can learn by seeing it.
If she lives in mich, there are several there! you're in luck; most mid-states do NOT have LLMDS like Iowa, ill, nebr., sd, nd,
you'll get a lot of reading material from me and to look over treepatrol's links shown in there too; it's our archive library of good articles, etc.
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posted
To bigmamma, AzureWish and bettyg please accept my deepest gratitude for all your words of advice and encouragement and the wonderful link for additional reading. It means so much. Merry Christmas and my prayers are for good health in the coming year for all.
Posts: 10 | From michigan | Registered: Dec 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I a mother of an 18 year old who was bounced around since 15. By the last visit, the family doc said that it was all psyche issues.
There are many, many people here who are in the same circumstances she is in, and there is hope.
It's a big commitment. It's also become my full time work to take care of my daughter and learn.
I can't add to the wonderful posts by those before me. I believe you have a couple of good LLMD's in your area.
It is a financial drain. There will lots of discussion of detoxing. That's important.
Relay our thoughts and prayers to your daughter. She is lucky to have you, but take care of yourself, as well. This will be a long, bumpy journey.
Her children have an opportunity to learn selflessness and compassion. These will not be wasted years.
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Some day, this mamma's gonna dance! 
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