Muscle Twitching, Pins & Needle Pain

[Lydkid]

My daughter is 9 years old and 6 days ago she started having muscle twitching. The twitching started on the right side of her back by her shoulder blade. The constant twitching has now progressed to both her arms and the left side of her back. The twitching also wakes her up during the night. She also has occasionally pins and needle pains and a cool burning feeling on her forearms.  The pain on her left side is getting more intense now.  We have had bloodwork done two days ago and it all looks normal.  We are waiting on the Lyme and related tick disease results. She is an active child and this just started suddenly. We live in Dutchess County, NY.

[loschung]

The website address that didn't type in right is for the site lymenet.org

Pardon the double post. LOL!

[loschung]

The website address that didn't type in right is for the site lymenet.org

[loschung]

For sure, the Western Blot can produce false-negatives. Especially if your daughter was on any antibiotics at the time the blood was drawn.

Overall Lyme tests are not very accurate anyhow, but as you'll hear from others on here, the quality of the lab where the blood is drawn and where it is sent to for testing does really have weight on the end result.

I have tested equivocal positive (for bands 41kd and 23kd), the first being specific to Flagella infections (i.e. Syphilis and Lyme Disease), however I have been tested for Syphilis and it was negative. The second band is a surface protein highly specific to Bb (Borrelia burgdorferi) or it's more common name- Lyme Disease.

There is a extremely unlikely chance that such a surface protein would test positive in an uninfected person, but many Lyme-Illiterate doctors would tell you otherwise.

Throughout the past few years I have only tested equivocal positive once and the rest of my tests have come back negative. As you begin to talk to more and more people suffering from Lyme Disease you will begin to see that they, like myself, rarely test positive.

It is a very universal story in the Lyme community. The tests are already no good and the Bb bacteria is not one to stay in one place, so after a period of time blood tests are worthless- with the bacteria moving into body tissue (Brain, Heart) and areas like the joints.

My best advice to you is to always ask what bands were positive, if any. Many doctors will tell a patient that their Lyme test is negative, even if some bands were positive. This is because the test did not fit CDC standards, which are outrageous and knock most of us with Lyme Disease off the list right away. Very few people test CDC positive, this being the reason for the annual CDC Lyme Infection estimate being around 22,000 a year and the actual estimate being around ten times that at 220,000 infections a year.

Add to this that both the CDC and the Infectious Diseases Society of America both have very conservative and politicized diagnosis and treatment protocols for Lyme Disease and don't officially recognize Chronic Lyme Disease at all and you've got one big controversial mess on your hands.

Back to what I was saying.

Always ask what bands were positive, as even one marker band (like 23kd or 39kd) is a sign of Lyme infection. If the doctor refuses to tell you what bands were positive, then get tested somewhere else and find your daughter a new doctor.

In terms of your question about the first test (which I imagine was the ELISA) being positive and the Western Blot being negative- it would not surprise me if your regular doctor uses this as an excuse to discredit a Lyme diagnosis. CDC standards need both tests to be positive in order for a diagnosis of Lyme to be made and both IDSA and the CDC are very strict about the positivity of Lyme tests in correlation to a diagnosis.

This is a sad, but very real truth us Lyme patients and our loved ones have to deal with on a daily basis.

Also, it is in your daughter's best interest to be taken to a LLMD (Lyme Literate Medical Doctor), who is experienced in treating Lyme patients and open to diagnosing and treating all forms of Lyme Disease, both Acute and Chronic.

Here are some good resources you might want to check out:

Below are four books I would suggest you read or at least scan through:

Coping with Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment by Denise Lang and Kenneth Liegner

The Top 10 Lyme Disease Treatments: Defeat Lyme Disease with the Best of Conventional and Alternative Medicine by Bryan Rosner, Julie Byers, and Michael Huckleberry

Beating Lyme: Understanding and Treating This Complex and Often Misdiagnosed Disease by Constance A. Bean and Lesley Ann Fein

Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies by Connie Strasheim, Maureen Mcshane M.D., and Thirteen Lyme-Literate Doctors

These books have provided much needed comfort and knowledge during a time when I needed it most, especially when it comes to laying out the treatment options your daughter is likely to come across in the near future.

Alongside these I would also suggest you watch the amazing Lyme documentary "Under Our Skin".

While it can be terrifying to see how damaging Lyme can truly be, it is a wake-up call to the brevity of the situation.

Youtube has been an important support tool for me as well. It has been nice to see and hear the stories of other people suffering through the same situation as me.

Here are some videos that have had a particular impact on me:

Lyme Disease: A Clear and Present Danger

http://www.youtube.com/watch?v=gLX4KF7xzv0

Lyme Disease: My Story

http://www.youtube.com/watch?v=em9OeiLkHUQ&feature=related

Lyme Disease: A Phone Called Saved My Life

http://www.youtube.com/watch?v=8sfQ5lBa9Nw

Under Our Skin (Extended Trailer)

http://www.youtube.com/watch?v=sxWgS0XLVqw&feature=fvst

There are many Lyme Disease videos on Youtube, so definitely check those out. The Lyme community is very large and very outspoken. There are many voices out there for you to lean your ear on.

Two websites that are excellent resources for Lyme-Literate Doctor contact info (you must request the info via the forums) and for overall support and knowledge gathering are:

http://***************/
You must join the above site first (it is free) and then you are given access to the forums.

http://www.mdjunction.com/lyme-disease
You must join the above site first (it is free), then join the Lyme Disease support group and then access to the forums is available.

Hope I didn't overload your brain with too much info. Good luck to you and your daughter! Stay strong!

- Kenny

[JackieCalifornia]

I'm not the best one to ask about test results -- there are others here who can interpret those better than I.  What did the MD say?

[Lydkid]

My daughter's initial Lyme test came back positive, but the Western Blot came back negative.  Any ideas?  Can the Western Blot produce false negative results?

[Lydkid]

Thanks for the info -

[JackieCalifornia]

I am sorry to hear your daughter is ill.  Do you know what Lyme tests were run, and what lab they are being sent to?  Did the MD have any comments on what it might be?

If she has had a tick bite, the ticks are so small that you might not see them, and many people never see the circular rash that can come with Lyme -- I didn't, and neither did other people I know, but we definitely had Lyme and coinfections.

If your MD takes Lyme seriously, that's good news, because 'wait and see' is not a helpful policy when it comes to Lyme.  Others here may have comments and suggestions, but my biggest comment is to be aggressive about finding out what is going on, as you are already doing.  There are two schools of thought among MDs:  (1) that Lyme is not a big deal vs (2) that Lyme is a serious illness that needs to be treated promptly to avoid a chronic infection.  MDs in the second group often belong to ILADS, the International Lyme and Associated Diseases Society (ILADS [dot] org), so that's one way to tell what your MD's orientation is, if s/he is a member.  The website has lots of good information about Lyme and coinfections, if you want to read up on it.

Let us know what you hear back on the tests.  Best wishes --