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My daugheter's two doctors can't agree

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Posted 10/12/2016 1:42 AM (GMT 0)
Im scared of watching under our skin one and two. Im scared itll make me cry.
And good point girlie didnt mean to mis write it.
And yes i agree that seeing a doc who also does holistic treatment may help cause they can help boost her immune system and start checking other things that are likely affected like adrenals etc.
Posted 10/12/2016 2:31 AM (GMT 0)
Also just thinking if this has been going on since she was 3 which is when the issues with her knee and then legs stared wouldn't her tests be so positive?

Wouldn't she be even sicker like with neurological symptoms?

Also she has had years go by like where her legs were fine and she seemed healthy. Though she di have trouble with strep and with canker sores and with her teeth. Could that be Lyme?
Posted 10/12/2016 3:48 AM (GMT 0)

jennydancingfish said...
Im scared of watching under our skin one and two. Im scared itll make me cry.
And good point girlie didnt mean to mis write it.
And yes i agree that seeing a doc who also does holistic treatment may help cause they can help boost her immune system and start checking other things that are likely affected like adrenals etc.

I cry when I watch them. You don't want to watch Justin and Christa then (they're Canadians - she had lyme disease and had such a rough journey...ending is good, but boy there are some gut-wrenching parts)
Justin has video-taped her throughout her illness...and at one point he breaks down...she was so very sick.

No worries, jenny - just wanted to make sure you knew that.
Posted 10/12/2016 9:44 AM (GMT 0)
Thanks girlie! I wish there was a synopsis online id rather read that than watch the movies!

Megan no the longer shes had the infections the less likely they will come back positive the tests. Her immune system will get weaker and weaker and make less antibodies so then the tests will come back negative despite having the disease.

Also everyone manifests lyme differently. Some people dont display symptoms neurologically despite having it a long time. For example my llmd thinks I have had lyme for five to six years but my only neurological symptom that is noticeable is panic attacks.
Posted 10/12/2016 12:50 PM (GMT 0)

Megan Eliz said...
Also just thinking if this has been going on since she was 3 which is when the issues with her knee and then legs stared wouldn't her tests be so positive?

Wouldn't she be even sicker like with neurological symptoms?

Also she has had years go by like where her legs were fine and she seemed healthy. Though she di have trouble with strep and with canker sores and with her teeth. Could that be Lyme?

Most Lyme tests, including Western Blot, look for antibodies, which are an immune response. Lyme suppresses the immune system, so many of us with chronic Lyme don't produce enough antibodies to test positive. My Western Blot was negative on every band, but my doctor explained that since there is a very high rate of false negatives, he never would use a negative Western Blot to rule anything out. At the same time, he tested my CD-57, which turned out to be the lowest he had ever seen. While it's not totally conclusive, a low CD-57 usually correlates with a chronic Lyme infection.

Lyme behaves differently in everyone, depending each person's biological terrain. Some have coinfections, some have toxic metals, mold, parasites, genetic mutations, etc. So we don't all have the same symptoms. Not everyone with chronic Lyme develops neuro symptoms.

Dental issues and canker sores can be related to Lyme. Again, not everyone has them, but some do. Chronic illness is so complex. Conventional western medicine treats the symptoms, but to really heal, we have to treat the root causes, which vary from person to person.
Posted 10/12/2016 5:47 PM (GMT 0)
Still struggling with all of this.

Today my daughter seems better. She seems to be gaining more confidence and is taking more steps with less support but still feels like she needs to be supported.

Is it possible that a small part of her not walking could be her fear? She is complaining less about the pain except for the mornings. I am not doubting her or telling her she is not feeling what she says she is.

My question is do Lyme symptoms come and go. Like can she get over this leg weakness and seem better but still have Lyme?

Though I keep coming back to her reactive band 39 and what you guys have said. And her medical history.

I sent her information to a LLD in Connecticut and am waiting to hear back to schedule an appointment soon I hope.
Posted 10/12/2016 6:07 PM (GMT 0)
I would think there could be a small part of her not walking because of her fear...i know when I had my first symptom...I was moving my upper body carefully...it took awhile before that 'fear' subsided. The pain was so intense that I didn't want to do anything that would bring it back.

But, just keep encouraging her...and little by little, she will get more confident.

Yes, she can get over the leg weakness - and will still have lyme.

Symptoms can come and go...

I think you (and your daughter) will feel better once she has seen the LLD.
Posted 10/12/2016 6:10 PM (GMT 0)
Thank you.

I think I am just overanalyzing everything right now and doubting everything.

I just want her to get better.

But I appreciate this forum so much.

Hopefully we can get her that appointment soon,.
Posted 10/12/2016 6:14 PM (GMT 0)
Also, ask if you can be put on a cancellation list.
Posted 10/12/2016 6:21 PM (GMT 0)
Lyme symptoms cycle - they can get worse for seemingly no reason, then ease up for seemingly no reason. There are no set of symptoms a person needs to show to have Lyme confirmed - it's mainly based on how the person responds to treatments, and symptoms that show on the very long list of symptoms for these infections.

We understand that the learning curve is pretty steep, and we need to learn a lot about these infections before things start making any sense. We have to remember that this is one of the most complex infections and complex bacteria known at this time. It's one of the only ones that can change it's outer surface proteins any time it feels it's under attack or needs to move to a different part of the body.

I would encourage you to check into PANDAS -Lyme, as that is from chronic strep infection combined with a Lyme (& possible co-infections) condition.
Posted 10/12/2016 7:12 PM (GMT 0)
If she has been infected 5 times with strep bacteria in 9 months and now she can't walk there is something very wrong with her health. At 8 years old the toxins her body is fighting must be incredible and it sounds like she is having a chronic inflammatory response. Strep can result in toxic shock which is deadly. Get the kid a new Doctor, TODAY!

Has she had a HLA DR/DQ test?
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