Lyme disease ponderings...

[bairnmama]

A thought has been bugging me for the past several weeks, but a conversation with a family member this past weekend really brought it to the forefront, and I was hoping to get some good advice from y'all. Please bear with me while I give some background...

Some of you might remember me posting some time ago with questions about my dd's issues and her psychological testing. She was diagnosed with a cognitive disorder, NOS; ADHD; dyspraxia with weakness in hand; and visual perception delays and is now in OT. One of her therapists has asked if she's had an MRI because she feels something is being missed, that dd is a very strange puzzle. I've also noticed that some of dd's processing skills are getting worse, not better (especially in mathematical and memory areas). I've begun to wonder if this is partly because of lyme disease.

Dd developed lyme disease when she was 3 or 4 yrs old. She got a tick bite in our front yard and had the bullseye rash. Lyme disease was confirmed by the Dr and she was given oral antibiotics.... I didn't think anything else about it. Before then, she was exhibiting no signs of any of these other issues she now has. I have her on video catching a ball at 18 months, whereas she has trouble doing that now. At 2, she could easily go to a bookshelf full of books and pull out the one I asked for, but she can't do that now at 8 - she can't find the book at all. She also often complains of tiredness and headaches and just recently started holding her arms folded close in to her chest almost squirrel-like, often without even realizing it. Could she still be experiencing side effects of the lyme disease? How would I go about determining if she is? And if she is, could it be treated now? My web searching has yielded some pretty conflicting information so I thought I'd ask here.

Any suggestions? Please let me know if I'm way off base as well. Thanks!

[Sophia]

Was a blood test done after her round of antibiotics?
Even if it was completed and she was negative for lyme, you could still ask for another one to make sure it wasn't a false negative.

From my understanding, there a few different types of blood tests that can be done; hopefully your doc can advise you on them-not all labs provide the different types; Igenex seems to be the most comprehensive lab for Lyme's.

Hope you get to the bottom of this. :grouphug:

[LisaTheresa]

Yes, these could be symptoms of chronic lyme and if she was fine before contracting lyme, I would definitely get it checked out. The way she is holding her arm is really a red flag to me. Here is my doctor's website. http://secure.intmednova.com/Portal/Resources/default.aspx If you look in the resources section, you can find lots of information about the disease. Also, there is a documentary titled Under Our Skin that is really worth watching and quite an eye-opener.

If you pursue this, please be sure to use a lyme-literate doctor so that you get proper testing done. There is a lot of controversy surrounding chronic lyme at this time and many doctors will not acknowledge or treat it. It is not easy to find a doctor. The good news is that if you get in with a LLMD and you get your daughter treated, she could recover from many, if not all, of her symptoms.

Lisa

[blessed2fosteradopt]

I don't have any answers for you but I will pray for your DD. I hope you find the answers you need. When it comes to Lymes (I am newly diagnosed) I am finding that it is very complicated and that everyone seems to have a different opinion. I pray that you find a good doctor who is able to give you the answers you need. :grouphug:

[MariannNOVA]

there is a documentary titled Under Our Skin that is really worth watching and quite an eye-opener.

If you pursue this, please be sure to use a lyme-literate doctor so that you get proper testing done. There is a lot of controversy surrounding chronic lyme at this time and many doctors will not acknowledge or treat it. It is not easy to find a doctor. The good news is that if you get in with a LLMD and you get your daughter treated, she could recover from many, if not all, of her symptoms.


We are traveling down the Lyme path with one of my older daughters. She has been forced to take a leave of absence from medical school due to chronic lymes. You definitely want to locate a LLMD, and they tend to stay under the radar as the CDC and Medical Licensing Boards tend to scrutinize them for not following cdc protocol.

A blood test for chronic Lyme Disease will often be negative due to the fact that the organism is no longer in the patient's bloodstream but has gone 'under the radar' (so to speak) and is spreading in the patient's organs. Interestingly, when the patient is being treated with effective protocol (many times herbal IVs), a patient will go from not having any positive Lyme Bands (there are five bands that can be positive) to starting with one positive band and then increasing from there. That is a sign that the disease is being driven out of the patient's organs and into the bloodstream, and treatment is adjusted accordingly.

LLMDs are often Rheumatologists or Infectious Disease Specialists or Internal Medicine Docs. Do not pass over Homeopathic doctors, naturopaths, or osteopaths. Sometimes, one does best with a specific combination that works best for them.

Best wishes -- thoughts and prayers are with you! Also, with a diagnosis, or even prior to that, find a local Lymes chapter -- you will find a wealth of local information that will be helpful to you and will help make this a bit easier to understand.

[bairnmama]

Thanks for the great advice and prayers!! No, she did not have a blood test after the round of antibiotics was finished. We are covered under military health insurance right now, so we have to go through our PCM for any referrals to specialists or they won't pay and we certainly don't have any money to pay out of pocket... hopefully he will be well informed on lyme and we can get any needed treatment covered by insurance. I'm just concerned that come the end of October we might find ourselves without any insurance at all if "d"h is not allowed to re-enlist. We are currently separated and he is being brought up on charges which might lead to court-martial, and I'm still trying to build up sources of income that will allow me to keep homeschooling in the event he can't/won't pay child support.

I'll check my library for the documentary mentioned, too.

[DaisyMay]

Lymenet.org has a lot of good information on it.

Gayle

[LilMama]

I saw this post, and I just had to reply. I have been checking out this board as a whole since I am just in my 2nd yr of homeschooling, but I've checked out this one specifically since my youngest DD2.5 is in ST, PT, and will soon be starting OT.

But, I was recently(May) tested for Lyme and coinfections and was dx with Ehrlichia. I was tested at the neurologist. I had tingling sensations in my extremities and various other symptoms that brought me there. I had already been tested for several other diseases that could cause those symptoms such as Lupus and Diabetes, and those were neg. While at the neurologist, I mentioned the funny spot on my leg last fall, and she did blood work.

I did 5 weeks of antibiotics was retested and was clear. My first 3 weeks was standard doxycycline dose, next two weeks was double that, then I had to stop due to adverse rxn. I feel a lot better now. I can really see how Lyme or a coinfection could cause a huge impairment. I had fatigue, regular headaches, short term memory issues, and dropped things like dishes more often.

She may or may not have a lingering infection. I would get her a Lymes IgG/IgM Western Blot test and tested for coinfections. Unless you get it sorted out, you will never know.

LilMama

[bairnmama]

But, I was recently(May) tested for Lyme and coinfections and was dx with Ehrlichia. I was tested at the neurologist. I had tingling sensations in my extremities and various other symptoms that brought me there. I had already been tested for several other diseases that could cause those symptoms such as Lupus and Diabetes, and those were neg. While at the neurologist, I mentioned the funny spot on my leg last fall, and she did blood work.

I did 5 weeks of antibiotics was retested and was clear. My first 3 weeks was standard doxycycline dose, next two weeks was double that, then I had to stop due to adverse rxn. I feel a lot better now. I can really see how Lyme or a coinfection could cause a huge impairment. I had fatigue, regular headaches, short term memory issues, and dropped things like dishes more often.

She may or may not have a lingering infection. I would get her a Lymes IgG/IgM Western Blot test and tested for coinfections. Unless you get it sorted out, you will never know.

LilMama

Thank you for sharing your story! Dd has an appointment with her PCM in the morning and I'm definately going to bring this up. Hopefully we'll be able to get the ball rolling.