Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
My daughter likely got it from me and started showing signs of illness at about 5. I primed her with 2 weeks of very low dose Doxy a few weeks before the test. She came back CDC positive.
Well, that's 2 of us now out of 5. Moving on to the next.
breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
I'm sorry to hear about your daughter... I've had it for years ..
My 18 yo daughter was diagnosed with lyme, babesia, and ehrlichia last Nov...
We're waiting to hear about my 16 yo son...
The dog was diagnosed two weeks ago...(after a vet duck told me he had leukemia of all things!!!!)
Again, I am so sorry that you and your family are in this together. It was a huge blow when I received the news about my daughter...You have my support!
posted
Sorry to hear about your daughter Jellybelly. At least now she can begin treatment.
My ten year old has lyme. I know about that part of your equation (taking care of someone with it), but I cannot imagine having lyme and taking care of a child with it also.
My daughter likes to fault me with not completely understanding how she feels. I am sure you will be a great source of strength for your daughter.
I hope everything goes well for the two of you.
Please take care and I will be thinking of you both. My prayers are with you.
Posts: 270 | From Charlotte, NC | Registered: May 2005
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cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
You know, it's one thing for the grownups to have lyme. You just kind of go on and deal with it. But it's a totally different place when your kids have it. Two of mine were dxed last June. I had thought that maybe they got it from me, but it appears they did not. They are patients of Dr. J and he sees a very distinct pattern of development with congenital cases, which my kids did not demonstrate....
Kids do seem to rebound quicker from this disease when treated properly, so I am putting out healing vibes for your child....there is lots of support here for you from parents that are in a similar situation..... cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
oops
[This message has been edited by cootiegirl (edited 28 July 2005).]
Posts: 1728 | From New York State | Registered: Oct 2002
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posted
COOTIE GIRL- do you happent to know more about these congenital cases of Dr. J's? I just get nervous that I may have gotten Lyme even before this past fall when I had the EM rash. I never had problems with antibiotics, but in the past 10 years I have and wonder if some of the reactions were "herx" after how I felt on the Amox this past week. I was bit by a tick 10 years ago so I just wonder... I hate that I am sick, but I can deal with it somehow, but I would just feel horrible if I passed it on to my kids in utero.
Terri
email me privately if you read this...I sometimes forget to check posts that aren't mine. I wish they had the email notification for that, too. LOL
Posts: 120 | From Northeast, MA, USA | Registered: Jun 2005
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posted
Jellybelly, I am so sorry to hear about your daughter, but thankful you know now and can get her help. It's bad enough that we have it, but when our kids have it, it's just a million times worse. Does "priming" someone before the blood tests with a low dose abx help with the test results?
Terri
Posts: 120 | From Northeast, MA, USA | Registered: Jun 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Jelly. So sorry about your daughter. I decided that due to her history of many tick bites I'd test my daughter too. Sure enough, she came back CDC positive also. Her symptoms are very mild so I hope treatment will be easy for her. We don't think it was congenital as she's never known a day sick (going into 8th grade next year and never missed a day from school sick YET!!!).
Good luck with your daughter. Hope she recovers quickly.
Michelle M
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Oh,it just breaks my heart to hear about all of these children testing positive for Lyme.
Michelle are you taking your daughter to Dr. J? How about you Jelly? We are on our way to CT in Sept. with my 3 year old granddaughter. Dr. H will treat her with
Dr. J. She is already on Zithromax and has been since May when we first took her to Dr. H. Good luck all of you, I will be praying for you and your children.
Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Thank you guys. My daughter is 26 now, but she has been sick since she was about 5. We just now have a name for it. She was likely born with it, since I was sick and didn't now it yet. Yes is also overwhelmed by yeast.
We are now looking toward the third generation. My daughter has 2 little girls of her own who will likely end up positive at some point. At least we know now. We can try to stay a head of the game with them.
Since my daughter has been sick for so long she is chronic. I am really pleased that we got such a clear cut and strong positive. For those who have been sick for a long time, maybe priming with ABX is the way to go. She got ++ and +++ on several bands. We used about 25 mgs. of Minocycline for about 2 weeks, with a couple weeks break before the actual test.
My daughter cried when she got home from the doctors yesterday. Even though she has been sick for so long it does feel odd to actually have a name for it. She said she didn't want to be sick, but she has already been sick most all her life.
My son who is 24 is also sick. Hopefully with the positive diagnosis for his sister he will pay attention now and get tested. I am 100% certain he will be positive. I don't know if I can get him to prime with ABX first though.
I am at least grateful that we have a clear diagnosis. There is treatment and I have responded well. I have a feeling she will too.
posted
I am so sorry that you are going through all this. We are 3 out of 4. Your family is lucky that you are so well informed. Very smart on the priming for test. I am just waking up from brainfog and learning a lot.
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breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
My daughter, 18, was very positive on Western Blot...diagnosed in November.
We tested my son six weeks ago and he came back equivocal. LLMD put him on doxy and we tested again. We're waiting for the results now.
Dr. Harris of Igenex suggests priming with antibiotics for the LUAT, so I would assume that it would be helpful for the WB too.
Yes, it's agony when the positive come back for our children. It's so much easier when it's us grown ups. I was a total basket case when my daughter was diagnosed. I'm better concerning my son, but it's still miserable. Now the dog has it too. We should get a bulk discount on the meds.
posted
Just remind her that now she is on the path to recovery. It will take time and she will need patience. THat is VERY hard to tell someone who has been sick a long time.
I have one child congenital lyme, one not congenital lyme but has lyme/babs.
and myself.
sometimes this household isnt a pretty place to be LOL but we ARE all getting better.
I have seen remarkable improvements in my son so try and keep the faith.
we are all here for you. It may be a bumpy road ahead.
With my daughter she would feel terrible with herx and then start to feel better and then do too much and feel terrible again etc.
It depressed her. She is finally doing more and more things without relapsing and she has been in treatment for 8 months.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by ICEiam: Oh,it just breaks my heart to hear about all of these children testing positive for Lyme.
Michelle are you taking your daughter to Dr. J?
"My" Dr. J. may not be the same as you guy's Dr. J - mine is out here in Chico (California). Yes, I've taken her - she went with me to one of my appointments!
She tested CDC positive at Igenex without any antibiotics or priming - she had like six positive bands (some ++).
Still, fortunately, her symptoms have been mild (fleeting knee pain, leg pain, tingling, etc..) She seems to be doing OK on 3000 mg Amoxy per day and is planning on starting Fall soccer next week. I'm keeping my fingers crossed and not suggesting there's any reason NOT to!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Just another good news/bad news story. You already knew she was sick, and like you, has been batteling a unknown enemy with enough success to at least get married and have 2 kids.
Now you know exactly what you are batteling and you have a cdc criteria test to prove it to all the questioning docs.
You know I wish both of you continuing success with batteling this enemy. I have no doubt you will both continue to lead a happy life in spite of the battle.
Posts: 561 | From connecticut | Registered: May 2004
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
I think she is over the initial shock and she is working on her brother now. I am really glad we have this info and hopefully we will be able to get my mom well. They think she has MS, but my doc says, no way, she has Lyme. Especially after she now realizes that the 2 bullseye rashes she had 4o years ago were IMPORTANT.
Posts: 1251 | From california | Registered: Apr 2005
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Cootiegirl,
Will you write more about:
"distinct pattern of development with congenital cases"
I wont be back till Monday but I am very interseted in knowing.
Thank you!
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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posted
Jelly, I thought I remembered your mom having been diag. with ms. and I remember your daughter being sick.
Perhaps your mom had lyme all along and passed it to you and then you to your kids.
Just cuz she saw bulls eye rashes 40 years ago doesnt mean she didnt already have it.
They say we can have lyme and live ok for years until an event such a child birth etc and then wham were down and dont know why.
Your family would sure make an interesting study if you could get a doc interested.
I was first tested postive for lyme in 1991 and then they dismissed that and treated me for polymyalgia rheumatica. Massive steroids for 2 years but I did get better. I did have a hi sed rate then which I dont now so perhaps it was poly and lyme. Who knows.
A few years later I had a hugh bulls eye (8-10" across) on my skinny leg but never saw a tick ever. Then I had the vaccine in 1999 and went down and couldnt get up.
I wonder if getting a bulls eye is an indication of already having lyme inside hence the bulls eye where the first tick bite doesnt show the rign. Just a crazy thought from a lyme eaten brain.
Posts: 561 | From connecticut | Registered: May 2004
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