Lilly, baby Lymie, graduates from PreK- 4 today!

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Martha's Vineyard
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Date Joined Jul 2008
Total Posts : 1119
   Posted 5/13/2009 6:53 AM (GMT -7)   
shocked   tongue
Just thought that I would share some good news about my baby lilly! She had missed so many days from shool in the last 3 years. Due to repeat lyme infections. And she had to leave school and repeat a year from too many sick days.
But this year she graduates out of pre-k 4 today..and will be passed on to the kindergarden class now!
I am thrilled!
She is putting on a performace and singing in front of the whole school..she is so proud!
I am so happy...just thought that would share some good news....
I have to run there now and film the whole thing!
:>)))))))))))))))))))))
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/13/2009 2:01 PM (GMT -7)   
That is wonderful. Our children are pure innocence we must fight to preserve that. I have been watching some things you have been discussing w us. Thanks alot. I will be pursuing ozone therapy. My daughter was gestating after i had already contracted lyme I did not know because symptoms before pregnancy were to vague. Besides the initial ones i thought was bad flu and poison oak. but nope. Symptoms were intense after her birth leading my to diagnose myself then bring myself to my lyme doc who confirmed me clinically. Now doing the W blot. So it is possible she may have it. I must find the cure. I like what you are saying. keep on for us all. You seem like a wonderful lady. God bless you! - Veronica
In the begining there was no Lyme. And the line is faded not showing where it came in. I became a new Mother and my Lyme decided to show itself. They said my blood tests were normal nothing was wrong. My swollen elephant like knee and finger and the unbelieveable back pain was just low vitamin D. I had a butterfly rash years before. When I told the rheumatologist I had the butterfly rash he said a key sentence. A butterfly rash is only present in lupus or Lyme disease. Well lupus pain is not in the back. i finally realized all the warning signs I had before. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. Now I pressed on. To a Lyme doc, after a nice run around and a lot of there is nothing wrong with you and a recomendation to counceling, He said Veronica this is Lyme and I am going to treat you. Now he knows and I know, Lets get it on paper. Getting the Flow Cytometry test. What kept me pressing on in the face of such amazing and eye opening adversidy is the baby! I had Lyme while I was pregnant Luckily I know I was not infected while pregnant. She is 19 months now and healthy. I am watching her with an eagle eye. God Bless everyone. Love Veronica.
P.S We are the ones who know about Lyme not the doctors. Isnt that just mad. Backwards . Alice in wonderland.


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/13/2009 2:50 PM (GMT -7)   
That's great news! I'm so glad Lilly is doing so much better. Congratulations to both you and Lilly!

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 5/13/2009 2:55 PM (GMT -7)   
YEAH!!!!!!!!!

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/13/2009 3:03 PM (GMT -7)   
Thats Awesome news!!

gotlyme
Regular Member


Date Joined May 2009
Total Posts : 21
   Posted 5/13/2009 4:36 PM (GMT -7)   
Congrats!! Enjoy the ceremony.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 5/13/2009 7:57 PM (GMT -7)   
Thank you guys! It was sort of odd being there. I had not met the other parents in her class. Because I missed her whole school year getting treatment at Enivta.
It was odd...some who knew me came over to me and told me that they were happy to see me with my camera.
Others just looked at me...like???
Oh well...I just tried not to cry as they shower her whole school year in a slide show.
I will be present for it all next year...so for that I am grateful...gezzz...No looking back now.

Veronica. You and I have something in common. I got lyme before I was pregnant with Lilly. And lost a baby in July got pregant with her in Sept.
No one could understand why the babie was perfectly fine at almost 3 mos with a great heartbeat and then...gone.
Now knowing that I was in my deer infested garden at the On set of June first. I did start throwing up and getting very dizzy. But had no idea of what the deal was.
I was just ignorant.
You asked me if there is a chance that your child has lyme. From what I understand it passes through the placenta and the breast milk as well.
So Lilly was born with it. I had a great immune system and she got it too. She was a fine baby. No problems at all. She crawled at 3 mos..way too fast...and was always so easy and happy.
But when she got it again in the vineyard at 11 mos. We found not one...but like 5 on her. I couldn't keep them off of her. I was really flipping out. And because they were so tiny and they would get in the flods of her skin....She then could not walk...cried all the time and vomitted. I was in the emergency room..almost ever day..and they were crapting to me.
I mean...it is not as if I am sort of trailor trash drunk toothless mom in there and stupid.
I owned a 4 acres estate in chilmark. Very fancy.
I can't go into it all with out getting really worked up. But about the time that I got it....then I knew just how she felt. I could barely walk...and I was treated immediatly. For Lyme.
But they didnot even care about her bullseye.
I came close to hurting some Dr.s that summer....really. But had them fired later instead.
After getting her on 800 of amoxy for 6 weeks....she got well. She was all better. One day she just came back.
But she would always get bad colds from other kids..and the kids would kick them in 3 days or so...But not lilly. She would be sick for two whole weeks. 106 fevers. vomitting....got asthma. So many Dr.s so much time wasted with many of them.
Then again last summer two big bloody bites in her head...I was like...did you bump you head...
Took her under the bright lights in the bath room. Pulling the blood out of her hair...then realized it was wiggliing in my fingers....
No way! a tick...a lone star tick. Could find the other one.
Had to fight with Dr. in Texas about it. But they know me..and I am bigger than them...and I got what I wanted...
Well....you will not get what you want with most dr.s but at least get your hands on the liquid amoxy...and they will maybe give you 2 weeks....then say you dropped it and get a revile and at least get the 4 weeks in there. I woud aim for 6 at 1,200 for 44 pound.
It kicked it in her in 40days. she was really sick...and then whammo.she was fine on the 40th day.
Hard to get a kid to eat and keep stuff down when so ill. 106 fever and vomitting. and so...chop up popsicles in little bits and let them eat those...push them....so that they do not get dhydrated. very dangerous.
Lilly's got lme and her blood was all sent to igenex,com. But it was not out of control. Dr. Jones in Ct. told me that I had kept it in check with my tactics. Moms have to follow their gut and go for it.
It is not easy.
I can't even tell you how many times she has gotten bitten.....maybe 12.
So....I never went back to the vineyard after that summer...are you kididng...and well....in texas...I am getting rid of the bird feeders and I am going to get rid of the grass in the back and turn in iinto walkways and a greenhouse. Lots of stone.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 5/13/2009 8:02 PM (GMT -7)   
Yes it is possible that she was born with it. But if she is doing well. Don't worryabout it now.
You will know if she gets it again. Just try to keep her out of tall grass and have yours sprayed for ticks and flees.
Make sure she does not get around other dogs.
Keep skin so soft on her.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


KeepHope
Regular Member


Date Joined Oct 2008
Total Posts : 222
   Posted 5/13/2009 8:19 PM (GMT -7)   
Yes yes yes..

Thats great !

Your an amazing Mom and Person.

Keep it up and your inspiration and inspiring stories
are a gift to all of us.

Most of all ENJOY It. ALL of it.

: )

LMuck
New Member


Date Joined Nov 2008
Total Posts : 4
   Posted 5/13/2009 9:25 PM (GMT -7)   
Hi Martha's Vineyard,
 
I noted that you are being treated at Envita and am curious about how successful your treatment has been with them.  I'm also trying to get an idea about cost (ie. how much the doctors visits are, etc).  Also, do they take insurance?
 
Any information you can provide will be greatly appreciated.  I just started seeing and Integrative Doctor up in NY for lyme and candida glabrata and am not sure if I'm completely sold on him yet.  I'm trying to find the best place to be treated and finally get rid of these horrible infections. 
 
Thanks!
LaurieMuck

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 5/14/2009 5:33 AM (GMT -7)   
Hi Laurie.
Gosh it is a long story. But yes I got treatment at Envita and yes I am completely better. It is costly, and not covered by insurance and it involves moving to AZ.
If you go back and read all my past posts that started in oct of last year. You will learn more than you want to know..:>)
I had a long struggle with this whole lyme ordeal. And it has gotten even worse with my 12 year old daughter. Her father refuses to let me get her well. But I can't even get into that now.
I have a lawyer now.
Call Vanessa at the clinic for info.
Go out and meet them, and while you are in AZ check out Dr. Fry as well. They all seem to be on the same page more or less. At at least the Dr.s out there have a very clear view of what is going on out there on our lawn and in our bodies.
Best.
Marie
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 5/14/2009 5:39 AM (GMT -7)   
Thank you hope....here is your bow back..:)
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


momtothree
Regular Member


Date Joined Aug 2006
Total Posts : 293
   Posted 5/14/2009 6:04 AM (GMT -7)   
A big congratulations to both Lilly and Mom!

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/14/2009 11:35 AM (GMT -7)   
Yes Mia is ok right now. I noticed a bruise which would come and go and change shape on the back of her neck when she was born and till about 7 months. I read that this may be a sign that she did in fact contract Lyme from me. On one occasion she was fevering out of nowhere and she went to the ER. It was unexplained. I was still in the proccess of discovering what was wrong with me at that time. I just watch her and research. I am in process of getting my first western blot. My lyme doctor is treating me now with 100mg of doxy twice a day. I know that is not enough and i am choosing not to take it until the western blot is performed. Last month infectious doc gave me mino so maybe my antibodies will be up. I love talking to the mothers. thank you, V
In the begining there was no Lyme. And the line is faded not showing where it came in. I became a new Mother and my Lyme decided to show itself. They said my blood tests were normal nothing was wrong. My swollen elephant like knee and finger and the unbelieveable back pain was just low vitamin D. I had a butterfly rash years before. When I told the rheumatologist I had the butterfly rash he said a key sentence. A butterfly rash is only present in lupus or Lyme disease. Well lupus pain is not in the back. i finally realized all the warning signs I had before. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. Now I pressed on. To a Lyme doc, after a nice run around and a lot of there is nothing wrong with you and a recomendation to counceling, He said Veronica this is Lyme and I am going to treat you. Now he knows and I know, Lets get it on paper. Getting the Flow Cytometry test. What kept me pressing on in the face of such amazing and eye opening adversidy is the baby! I had Lyme while I was pregnant Luckily I know I was not infected while pregnant. She is 19 months now and healthy. I am watching her with an eagle eye. God Bless everyone. Love Veronica.
P.S We are the ones who know about Lyme not the doctors. Isnt that just mad. Backwards . Alice in wonderland.


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 5/15/2009 7:47 AM (GMT -7)   
Since lyme causes damage to out immune systems. It is a good idea to build your babies up. She got immune boosters for kids at envita. And I have her on all of the kids baby vitamins.
Like IMMUNE C PLUS ZINC AND ECHINACEA. It comes in a candy form....guumie bears.
It is a immune Booster.
I also have her on ENTRIN CHILDRENS FORMULA. FOR AGES 0-5 She took this when she was on abx.
And IMMUNO KIDS. It is a natural support Immune defense.
That along with Lots of water. And I watch her diet. She eats a lot of fresh fruit. And broiled fish and chicken.
It try to keep her diet very simple. Very natural. I also taught her how to grown baby tomatoe plants.
And so she see how her plants do so great if water them a lot and give them the best soil. So she knows to drink a lot of water and eat well...I call her my little tomatoe.
We tool a plant to her class that had over 7 tomotoes on it. She was the only one in the class that would eat them along with her teacher.
But she beamed and told me...took at all the juice in side this tomotoe momma! from all the water we gave him.
I have thought her to repect fruit and the fish that swam than we eat...ect. She loves fish too. Because mermaids eat fish too...lol
I bought a large CYYSTAL water despenser for our home. So the kids can tap it and get cold fresh water all day. I keep a little baby cup on it for her to get her water all day. That is pretty much all she drinks.
Oh and the little orange juice boxes.
I cut back her milk drinking. So it is not water that she wants. Plus because she can do it herself. I drink about 5 gallons of water a week. I am part camel...lol
:>)
All of these things are very helpful with a little one. Because of the lyme and other disease's you need to be careful of food alleries with your child. And are best keeping it very simple with him.
And keep an eye on coughing and asthma. That can be a tricky thing to realize. Thinking it is a bad cold...but it is not.
Best
Marie
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/15/2009 8:50 AM (GMT -7)   
Thats very helpful. I will be talking to you more.
In the begining there was no Lyme. And the line is faded not showing where it came in. I became a new Mother and my Lyme decided to show itself. They said my blood tests were normal nothing was wrong. My swollen elephant like knee and finger and the unbelieveable back pain was just low vitamin D. I had a butterfly rash years before. When I told the rheumatologist I had the butterfly rash he said a key sentence. A butterfly rash is only present in lupus or Lyme disease. Well lupus pain is not in the back. i finally realized all the warning signs I had before. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. Now I pressed on. To a Lyme doc, after a nice run around and a lot of there is nothing wrong with you and a recomendation to counceling, He said Veronica this is Lyme and I am going to treat you. Now he knows and I know, Lets get it on paper. Getting the Flow Cytometry test. What kept me pressing on in the face of such amazing and eye opening adversidy is the baby! I had Lyme while I was pregnant Luckily I know I was not infected while pregnant. She is 19 months now and healthy. I am watching her with an eagle eye. God Bless everyone. Love Veronica.
P.S We are the ones who know about Lyme not the doctors. Isnt that just mad. Backwards . Alice in wonderland.

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