posted
We are only into this for 2 months but it has been 2 months of hell! My 13 year old is seeing a llmd. She was on 3 anti-biotics..but now they have taken her off of all meds (now for 1 week) to clear her up of hertz...She continues to get worse...she is throwing up...daily...she is coughing like a smoker...but the worse is she has lost her brain....the simple has been made complex. Today she went to feed her doves and she cold not figure out how to open the cage. She came in crying..she is afraid she will forget everything...I as mom feel helpless...like I am watching my daughter slip away...this is much too hard for me..and I am pretty tough nut! We have been through other hard time..my baby having ecoli and almost dieing..and many others..but this seems to worse....I just needed to vent...I know there is nothing more for us to do right now. thanks for hearing me, Cathy (Aniyah)
I took ginger capsules and that helped a bit, but finally they put me on Minocycline instead of Doxy.
There is also medication that can help prevent the nausea.
This disease seems to get worse during treatment.
That is normal. The spirochetes are dying off. I am not sure how much you have educated yourself in regards to this illness, but that would help you a lot as well.
Read "Cure Unknown" and watch "Under Our Skin"
There are other great books as well.
Read all the articles that you can find.
It can take 6 months to 6 years or more for someone to get completely well.
If there is a local support group, you may want to connect with them.
I just feel so lucky to have found a LLMD to help me and my family. It is sure better than being abondened by the medical system.
There is so much hope and so much success with these treatments.
Read the success stories found here! That may give you hope.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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posted
There is nothing in the world like watching your child suffer. Words can not describe the pain. I am sorry.
TLC, help her with detoxing like epson salt baths, more water to drink, perhaps a sauna if she can tolerate and more sleep. Hopefully this will pass.
Posts: 747 | From Utah | Registered: Apr 2010
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
I am so sorry your daughter is feeling miserable.
There is nothing worse than watching our children suffer.
It does get worse before it gets better. Lots of water and lemon,rest and hugs.
Probiotics and liver support as I am sure your LLMD has advised.
Hope things ease up for her.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I can relate. There really isn't anything harder in this life than watching a child suffer and as a mother, feeling helpless.
My daughter was thirteen also when she contracted Lyme...it is nothing less than hell.
She lost her brain too...but in a different way...she went off plumb...and struggled with serious depression.
So, so sick, both physically and mentally. I do believe treatment almost killed her...so what would of happened if she didn't get treatment?...I have wondered that at times.
Anti-nausea medication does help. So does peppermint drops in water.
Heat can actually make a person feel worse...so I would moniter that.
The days can be dark, for sure, but things will improve...unfortunately we are asked to be patient and as a mother, that is the hardest thing to do.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Hi Aniyah,
I have an 11 year old who is suffering and I know how you feel. It is difficult to watch and not be able to do anything. Especially when they are throwing up and physically weak.
Even though she is off antbx - is she still taking supplements?
My son is helped out a lot (stomach-wise) by sticking to a strict gluten free, sugar free diet and 3 kinds of probiotics...
I have to read a lot of labels, shop in the organic isle, drive out of my way for health food stores, and cook stuff we normally wouldn't eat... but he doesn't throw up as much as he used to.
It's a small step in the right direction.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Thank you all! We are doing everything that is stated. I feel like I am Alice in Wonderland and have fallen in the the hole! This is just the most bizarre sickness I have ever studied. I really need to hear some good news stories about this! Esp. when it is children involved!
I am really wanting to start a non-prof. that is dedicated to helping financially struggling people get the tests they need and the treatment they need..maybe someone already has done this? The tests that our llmd want her to take total $1200...money we just don't have...and I know that others must also be in that same boat. Does anyone have any ideas?
posted
Cathy, I know the Alice in Wonderland feeling.
I hope that your daughter's journey with this disease is short-lived.
Our battles continue and we are 4 years in. Things aren't anywhere near as bad compared to where we've been, but the fight continues on. As do the expenses.
My advice to you would be to put the non-profit idea on the shelf for now. I had the same idea. And it's a good one. Except for the fact that you likely will end up spending way more than you can afford to begin with to treat your daughter, and therefore will not have the resources to start a non-profit.
Focus on getting your daughter well for now. I think all of us moms with sick kids are more than willing to help others. But we have to get our own kids well before we can do something like starting a non-profit.
In the meantime all we can do is try to help others here with whatever knowledge we have and offer support. We can contribute to lymenet too.
And we can distribute copies of "The ABCs of Lyme Disease" and "Cure Unknown" and "Under Our Skin" to family, friends, neighbors, school districts.
Best to you and your daughter.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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