kids who are recovered from lyme

[JulieKatie]

I am feeling very down dealing with my daughter’s lyme and her pain and suffering. Do any of you know any kids who have
beat or gotten close to beating lyme. I am grasping for some hope for her, and cannot find any. In some ways, it would be easier to have cancer, because at least after 18 months there is generally a remission/cure. and everyone understands what you are going through, and you don’t have to convince anyone that what you have is real. I am angry…hurt…overwhelmed. It is just one of those days that if I went to our pediatrician, I would take her out (verbally) for telling me for 3 1/2 years that Katie couldn’t have lyme. I would also take out (verbally) the Riley Rheum. for “rolling her eyes” when I asked about lyme, and I could go on and on. I think I just need a break…from everything. I can only imagine being in this situation without a wonderful husband whom I love. I am just grasping for something…so I can believe better days are ahead for my Katie. Thanks for letting me vent….

Julie
mother of Katie, 12 1/2 yrs old and lyme for 3 1/2 years.
Long road ahead of her…

[Eileen]

Dear Julie,

Oh…how I can relate to this. Not only does this disease take its toll on the ill person…but the whole family as well. I’ve lived and experienced exactly what you are going through. There were so many dark days for me and my oldest child that I wanted to crawl into a cave with a candle and stay. Please, Julie, let’s talk. PM me and we can exchange phone numbers. Here for you, promise.

Eileen

[Trudi]

@JulieKatie wrote:

…so I can believe better days are ahead for my Katie.

Hi Julie–
I am sorry you and your daughter have to deal with this disease. Although it does take time and can be quite discouraging, better days ARE ahead for Katie. I will keep you in my prayers. Oh, yes: vent away!!
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Valsmum]

Have you joined a local support group? Can you call your llmd and see if anyone would be willing to talk to you over the phone such as a mother that has had a child recover. You could ask if they would ask a patient if they would call you if they have a recovered child. I know an llmd by my house told me there was a support group at a local pharmacy.( I never made it there) Did she have a tick bite? Have you tried eliminating grains and sugars? Thatreally helps with my symptoms, within days I feel better if I avoid grains, sugars and dairy. Its hard but worth the relief in my opinion. I notice some arthritcs are not affected by diet, but I sure am. Mercola & Dr Joel Furman have protocol that help those with RA . Mercola has article that is about his patients doing better with their herxing if they eat his recommended diet.
May I ask her worst symptoms? Does she have arthritis?
I hope she starts feeling better, I will say a prayer for the both of you. Take care.

[kater]

Dear Julie
I have Lyme and Scleroderma, and while my kids do not (although one is just being tested because we can’t find out what is wrong) I have decades of experience in dealing with very sick kids of my own, and through my work. I understand what I call the unifying aspects of the illness–where I merge with my child in their pain and struggle for health and life and many times I lost myself. It is a very hard place you are in and I can only imagine that you would rather be ill yourself than to watch your girl suffer. You are very lucky to have a loving and supportive husband 😉 I can relate to your anger and frustration with the doctors. One day years ago when my son was in the hospital I waited all day at his bedside for the doc. I had so many questions and fears and was afraid to leave for a moment to even get nourishment for myself. When he finally came he just said something flippant and turned and walked away. In my angst I actually ran after him and grabbed his shirt sleeve 😳 😆 It was embarrassing at the time but I chuckle about it now.
Katie’s youth is on her side and I have faith that things will improve for you all in time. Hope for things to be better in the future is wonderful but it always helps me to remember to savour the preciousness of now. There is great richness, learning and love in the struggle too and I make a point to remind myself to put my attention on that rather than the despair. This helps me a great deal in dealing with my daughter’s health and my own. Take time to CARE FOR YOURSELF TOO. Exercise is so helpful. Feel free to write any time if I can help you in any way. Blessings to you and Katie in this journey
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

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