Re: my son is losing hope

[Guest guest]

Oh... I am so sorry.

My son was sick in bed for quite a while and I understand it RIPS your heart

out.

I was also sick for many years with lyme and it can be very discouraging....

often times I was sure I was going to die a slow horrible death and even thought

about suicide on brief occassions but I had two children that I didn't want to

disappoint.

When my son was at his worst and the best pediatric lyme specialist in the US

was unable to help him I met a women who had overcome lyme. She told me that she

had been a Harvard professor, no children, two beautiful homes in the north and

one in the south and she spent her weekends either skiing or sailing with her

husband. Until she got sick with lyme.

It took several years of misdiagnosing and different abx and finally she met a

naturopath/homeopathic Dr. in New Mexico. Who was able to make her lyme go

dormant and now she teaches yoga at a local studio and is in great health

physically, spiritually, and mentally.

I had no money left and no hope left at this point.... but I had to try

something different because what we were doing wasn't working. He was getting

worse, falling far behind in school etc. It was springtime and all the neighbors

where playing outside and he was bedridden and I thought we were going to loose

him. The pediatrician and the infectious disease specialist had " thrown up their

hands " so to speak.

I had no where else to turn. I had spent a lot of money on another homeopath so

I was a little hesitant to go down that road again as we were in danger of

loosing our house because of trying to keep up with med bills. But my father

gave me the money and I started working with her.

It is now 9 months later and he is in school full time, playing hockey, acting

like a normal healthy 13 yr old and I owe it ALL to her... in our we refer to

her as an angel. Don't bother to call her if your son will not comply to certain

things because the regiment can be difficult.... ie specific diets that must be

followed, hydrotherapy daily sometimes several times/day etc. But when you are

truly at wits end you WILL DO ANYTHING.

Trust me, we almost lost our home trying to pay for all of the different lyme

treatments for both of us over the past 5 years. If I had only found her sooner

I wouldn't have wasted all that money. I would not recommend anyone that did not

work as I know how it feels to invest lots of money and hope in something that

is unsuccessful.

If you would like her info just let me know

I will keep you and your son in my prayers.

What ever you do don't loose hope!!

Sending you peace and love,

Laina

From: rj.palley <rj.palley@...>

Subject: [ ] my son is losing hope

Date: Saturday, December 18, 2010, 11:17 PM

 

My 17 year old son has been sick in bed for 4 years, diagnosed with Lyme

for a year and a half, on IV antibiotics for 9 months, and is worse than ever.I

try to stay hopeful but it's heartbreaking, and we are both just about tapped

out.Has anyone else's child been on IV meds this long and gotten well?

[Guest guest]

My 18 year old daughter was on IV antibiotics for 7 1/2 months and while many of

her Lyme and co-infection symptoms were getting better, she was SO very sick.

Her LLMD said she was building up toxins and that was making her so ill. He put

her on an IV antibiotic holiday while she received IV glutathione and IV vitamin

C. Now her PICC is out and she is taking oral antibiotics. Maybe your son

needs to take a break and detox for awhile. It is an excruciatingly slow

process. Her LLMD has years of experience and we just have to put our faith in

him. In retrospect, he has been right about everything I questioned or had

doubts about. Don't be afraid to question your son's treatment. If you have

faith in the doctor, stay the course and know it takes a long, long time.

[Guest guest]

Does your son take anything to " boost " his energy or make him " feel

better? " Lymies tend to be very deficient in certain vitamins and

minerals that totally drain all your energy and make you feel worse

and I think harder to heal without them. For example, my Lyme

specialist suggested we take Magnesium, B-Complex 100, and Vit. D in

addition to my multi that I was taking because it doesn't have enough

and all of those and are energy and/or immune boosters. I still years

later take all of that extra because it helps so much.

If you can find a doctor in your area that makes Glutithione Shots,

they work even better than the pills. Will be VERY hard to find

though, you'll probly have to find a Holistic doctor or ask your Lyme

specialist to make them for you. It's a once a week shot in the rump

muscle and they raise your immune system. I've seen it happen. Don't

expect to find them but it's worth a try to ask. Amino Acids are the

building blocks of your whole body really and it's helped me in the

past to take 2 to 4 pills of them a day that you should be able to

find at any good vitamin shop or online. Everyone's body is different

and Lyme's affects us all differently so you have to trial and error

different supplements and remedies to find out what works for your

son. I know that sounds like witch medicine but ask your doctor first

and keep an open mind because sometime cures or at least " feel better "

does exist if you just know what they are. I wish someone would tell

us!

Good luck,

Suzanne

On Dec 18, 2010, at 10:17 PM, rj.palley wrote:

> My 17 year old son has been sick in bed for 4 years, diagnosed with

> Lyme for a year and a half, on IV antibiotics for 9 months, and is

> worse than ever.I try to stay hopeful but it's heartbreaking, and we

> are both just about tapped out.Has anyone else's child been on IV

> meds this long and gotten well?

>

>

>

[Guest guest]

I am so sorry for your struggles. Teenagers and Lyme is hard enough without

seeing progress. My son, age 15, has been on IV's for 2 months and we are

seeing progress but he also is on 2 other antibiotics and we are treating the

coinfections, too. My son takes artemesia one week a month. We are on a diet to

boost his immune system. Good sleep is part of his treatment too. He has been

homebound since April 20, but sick 3 years prior. He was diagnosed in May.

I have so many questions for you. Are you with an ILADS doctor? How much

rocephin is he on? How are his adrenals? What is his vitamin D levels like? What

other things are you doing? Do you know his CD-57 level? Where do you live?

I know of 2 families in Illinois who are struggling to get better. One boy is 18

and has been homebound for 4 years. He just doubled his IV rocephin. They are

doing all kinds of alternative stuff, too. They are looking into a zync

deficiency- KPU or KUP, something like that. They are testing for different

coinfections. Another boy, age 15 I think, is wheelchair bound and they haven't

seen hardly any improvement with IV's since May. They are trying to learn more

about XMRV.

My son had to go on an antidepressant because bartonella changed his personality

but also he lost his teenage life. I must say there has been a huge improvement

with effexor.

Feel free to email me privately at ktdommer@.... We can exchange phone

numbers and talk over the phone.

I have an 18 year old in treatment for Lyme but he is not really sick. I am in

treatment, too. After my youngest was diagnosed with Lyme, it was discovered

that I gave it to both of my boys in utero. If I can help in anyway, please let

me know.

Kari