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01/05/2012 02:49 AM

Need help for my 14 month year old.. Please

5150fletch
Posts: 61
Member

I am on mdjunction every night and have been for the past 4 years but rarely post.

I am always looking for a way to help myself recover from my illness which i only recently had confirmed as lyme and ony found due to a brilliant women on this forum.

The medical community has no idea about this disease in Australia .

However I am reaching out to all Lyme mums , dads and suffers for any help I can get for my 14 month old boy whom I am convinced has Lyme.

I have tested positive by CDC standards, my wife is positive by Igenixs lab testing but my son came back as equivocal .

So He is in the wait and see category and I know just because he didn't come back as positive doesn't mean he does not have Lyme.

His symptoms are low muscle tone,hypotonia, he has missed all his milestones, he is trying to talk but can not, only just started to crawl and is always tired.

My concern is that these symptoms could be all caused by Lyme and the longer he is left un treated the higher the chance of him having an Lyme induced autism or similar spectrum of disorder and the damage being permanent or worsening.

Everyone tells me I'm reaching and that my son is fine and that everyone develops at a different speed and he will get there eventually.

But then again they told me I had: ndph, fibro,depression, ADHD, i was a hypochrondriac and so on.

Anyway I need to take action and I am willing to spend every last dollar I have to give my best mate a chance.

I am looking for a doctor or a clinic that specializes with kids and Lyme and I am willing to travel.

I have had my son on 1/5 of the cowden protocol for 3 weeks, but the more I read and research, the more I know he may need ABX or a combo of both.

Any information would be greatly appreciated,

Any other mums or dads that have any feed back or have had a similar experience, I could really do with your support.

So many questions ?

It's like the loneliest journey when your ill but when you kids isn't travelling so well, your heart break on a daily basis and you can't help but blame yourself for passing it on.

Thanks for your time.

All the best

fletch

P.s sorry for any spelling mistakes & bad grammar . That's why I don't post , I find it hard with this daily brain fog and headaches.

emphasized; formatting was perfect fletch!! bettyg, leader/llmd coordinator

Post edited by: Bettyg, at: 01/05/2012 04:44 AM

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01/05/2012 03:39 AM
threeofus
 
Posts: 367
Member

"Everyone tells me I'm reaching and that my son is fine and that everyone develops at a different speed and he will get there eventually."

As the parent, YOU KNOW! I had so many people tell me this about my children. I even had a doctor tell me I needed to be a stronger, stricter parent because of my daughter's behavior. Keep the faith and keep working on it and you will get help for your child!!

My oldest daughter got an equivical test her first test. After 3 months on abx treatment, her test turned positive. If you could somehow get a trial run of abx, this could help your testing for him. I know this is difficult though....

Maybe if you came to the United States and got started with treatment here, it could keep you going until the positive test came back? Maybe there is a natural protocol that can help push the test positive?

I'm sure others will have really good advice for you, but I wanted to give you some support to say trust your instincts. That IND test with his symptoms and your diagnosis pretty much screams lyme to me.

Hang in there.

emphasized, bettyg, leader

Post edited by: Bettyg, at: 01/05/2012 04:46 AM


01/05/2012 04:07 AM
waxby
waxbyPosts: 4811
VIP Member

~~~Hello fletch,

~ "So He is in the wait and see category"You don't need to wait and see. See to it right away! He IS positive and must, please, begin treatment immediately!

~~~Get Byron White Formulas ...

~ http://www.wayneanderson.com/pages/formulas/intro

~http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/2418870-byron-whites-formula-guidance

~~~And Samento and Banderol ... ~~~Some Nutramedix Herbs:

~~~Banderol: Shown to be very effective against borrelia burgdorferi, the cause of lyme. Also effective against Bartonella, babesia, and ehrlichiosis. Known as "keep 3" which means "Kills Everything Except people."

~~~Samento: Shown to be very effective at eradicating borrelia, many species of bartonella, and ehrlichiosis. Shown to be more more effective for certian indviduals than Doxycycline.

~~~Lakato: Good anti-bacterial properties & anti-viral properties, effective agaisnt Borrelia, Bartonella, and ehrlichiosis. Also Known as "keep 3" which means "Kills Everything Except people."

~~~Enula: Extract of three different plants, Useful in treating parasitic infections, also effective against certain species of babesia. Good anti-parasitic and anti-bacterial properties.

~~~Houttuynia: Very effective against resistant strains of Bartonella, especially if other treatments fail.

~~~Cumanda: Very effective in treating Borrelia(lyme), very good anti-fungal properties. Also good against Babesia, Bartonella, and ehrlichiosis. Kills Candida as well. Also known as "keep 3"

~~~Quina:an anti-inflamatory,broad spctum anti bacterial and anti protozoal effective against Bb and the co-infections.

``` Mitchell ```

Post edited by: waxby, at: 01/05/2012 04:10 AM

Post edited by: Bettyg, at: 01/05/2012 04:38 AM


01/05/2012 04:54 AM
Bettyg
 
Posts: 32211
VIP Member
I'm an Advocate

fletch, my heart goes out to yoru entire family.

YOU did a great job posting and breaking it up; thank you so i could help you quicker; i emphasized things so we wouldn't overlook them when attempting to help you.

Pages 17-19 discuss Adult and Kids Treatments

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1173561-08-kids-lyme-guidelines-of- dr-burrascano

Dr. B's Supplement List

http://www.lymepa.org/Nutritional_Supplements.pdf

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/2444918-dr-corsons-evalmgmt-kids- tickborne-diseases

dr. corson's kids' evaluation is a must to read/print off. been awhile since i've read it fully; she should address babies/toddlers in this~~

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/2013437-where-is-the-headache- located-by-dr-ann-corson

that's what i can think off top of my head.

there are germany llmds or would prefer going to W. COAST CALIFORNIA; S. CALIF. is cheaper than other parts of calif.

please post in llmd request forum if you'd like to do this;

subject: 10 mo. old, S. CALIF. KIDS LLMD

then just COPY this direct link there; we'll help you all we can my friend.

we have other aussie members too, but they're hard to find since site owner didn't set up things showing state/country except profile which you just can't get to easily.

hugs/prayers, headed to bed folks,

bettyg, llmd coordinator/leader


01/05/2012 09:04 AM
mem6583

So so sorry you are going through this. Hopefully you have already posted in the LLMD request forum.

As a mom with a son who also has Lyme, my heart totally goes out to you. Sending prayers and best wishes!


01/05/2012 05:00 PM
Bettyg
 
Posts: 32211
VIP Member
I'm an Advocate

fletch,

another thought, please go to LLMD REQUEST FORUM, click on forums right above where we are typing, llmd forum is 1st.

now look forthe post about SUPPORT GROUPS,

click on it and look for the INTERNATIONAL LINKS i have ... thre is AUSTRALIA LISTED.

have you been involved with them; they might have some suggestions/same situation you are in with YOUNG TODDLERS.

see who they are dealin with. SUPPER TIME, got to go folks back AFTER MIDNIGHT.

hugs/prayers; i've not forgotten about you overseas isolcated. so many australians hae been bitten!!

BETTYG, llmd coordinator/leader


01/05/2012 07:01 PM
5150fletch
Posts: 61
Member

I really want to thank you all that posted and sent me private messages, without your concern and input we as a family would be completely in the dark , with no where to turn to.

You have given me many hours of reading.

On a personal note I have just started ABX which consists of 300 mg mino, 1200 mg flagyl and 1 shot Bicilin working up to 2.

How painfull is that Bicilin shot ? , i nearly cried ... Can't believe I've got to do it again and again..

Betty any chance you can send me a link to that forum, for the life of e I can not navigate my way there


01/05/2012 07:57 PM
benniferobin
benniferobin  
Posts: 356
Member

fletch, i don't have any advice but my heart goes out to your family. i have a 5 year old, 4 year old, and almost 1 year old. we just had them tested this week and we are waiting their results. they are all healthy that we can tell but it kills me to know that i could have passed this down to them. hang in there and keep picking the brains on here. they are super helpful and always open!!

01/06/2012 02:47 AM
Bettyg
 
Posts: 32211
VIP Member
I'm an Advocate

here you go with all my love/support wrapped up in it for your entire family.

having a few more people to stop by as time permits to read all of your post as well.

yes, unfortunately, i've given you enough reading info for 1 year if you really want to be as informed as you can in fighting for REMISSION/quality of life again.

i didn't have the bicillin injections; i had 2 other types of shots to my hips are my hip replacement surgery for 2 wks; so painful.

i also have diabetes 2, my fingers are getting so sore/hard from my 2-3 blood sticks daily. thank you god, i'm not diabetes 1 with 10 sticks daily!! we do have our blessings when we chose to find them.

added 10.27.11

above ireland site providedthe BELOW canada/EUROPEAN site names; any problems, go to ticktalkireland link above!!

Australian Sites

o Lyme Green Australia

o http://www.lymegreenaustralia.blogspot.com/

i have an aussie email friend who i've not talked to in a long, lon time if her email is still current if you don't have any luck with that aussie web site ok.

hugs/prayers,

bettyg, llmd coordinator, leader, iowa activist Kissing Kissing


01/06/2012 12:20 PM
goobered
goobered  
Posts: 216
Member

Fletch,

God bless you and your family. You are going through such a difficult time. Do not let guilt enter in for one minute. I, too, passed Lyme to my daughter and she came close to dying twice.

But guilt will steal valuable love, fun and peace from your time together. It also will have a negative effect on your immune system.

Remember, your child has LIFE because of you and loves you very much. Embrace the joy of being a parent, cherish that baby and your wife.

Days you may be bed-ridden, be happy you can read or even just breathe! Attitude makes such a difference! Choose to Be Happy! Don't let your circumstance dictate your happiness!

Ok, advice for the killer of a shot...put your butt on ice! No lie, that's what I did! And I did shots for about 2 years before I got my central line. I would keep the ice pack on until my butt felt like it was frozen meat! After the shot, then I would use a heating pad. That and rubbing it helps the medicine disperse so that it does not knot up and ache.

For your baby, an equivocal test IS positive! It's like being a little pregnant! Treatment is needed NOW!!! I will send a message to Betty about who I would try to see since you can travel.

God bless you that you are willing to do whatever you can to take care of your family!

Keep us updated on how you guys are doing!

Goob

Post edited by: goobered, at: 01/06/2012 12:21 PM

emphasized, bettyg, leader

Post edited by: Bettyg, at: 01/06/2012 04:54 PM

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