Sympathetic symptoms, old age, or LD?

[lyme_mom]

Nancy I was responding to Wendy's comment about the child getting a cd57 test.That makes sense Wendy that it can be an indication if very low in a child. Nancy, the antibody tests for Lyme only tell you if you have been exposed to Lyme but not whether you are currently sick with Lyme. The cd57 is used by llmds along with a clinical evaluation of the patient to determine If the patient is currently sick with Lyme or (in the case of a patient considering stopping antibiotics for Lyme) to determine if the patient will relapse or not off the drugs. A score under 100 is suspicious for Lyme because it is the only infection that they know of that depletes cd57 cells. The cd57 count should be over 100, ideally up to 300 in a healthy person. The lower the score the more likely the patient has an active Lyme infection (ie undr 60). It is a measurement of how well the body is handling the lyme infection according to the doctors we have used. I would get it because a high cd57 plus Lyme symptoms suggest coinfections are the problem, not borelia. It must be done at labcorp and I have read that u can't do it on a Friday or saturday. Not sure about fri but better do it earlier in the week to ensure an accurate score. It comes back in two days sometimes. U will get two scores. The higher number is the one they look at and the lower number appears to be a percentage of the higher number. Don't have mine in front of me so I can't give you the details but feel free to pm me if u need help reading it.

[justinekno]

What is a good resource to find info about muscle testing?

 

This is why muscle testing can be very helpful. It can confirm a diagnosis (such as lyme/bartonella/babesia for example) or it can unearth other possibilities. Of course insurance won't care about muscle testing :-) but when you are operating in the dark and you are very sick any intuition is helpful.

[NancyD]

Thanks for this great explanation, Lyme Mom. I'm going to print it out and take it with me to the doctor tomorrow. My DD's DAN doctor also said Labcorp. So for me I will do IGX Basic Lyme Panel, Labcorp CD57, and then Myco P IgG and IgM (any lab for this).

 

Nancy

 

Nancy I was responding to Wendy's comment about the child getting a cd57 test.That makes sense Wendy that it can be an indication if very low in a child. Nancy, the antibody tests for Lyme only tell you if you have been exposed to Lyme but not whether you are currently sick with Lyme. The cd57 is used by llmds along with a clinical evaluation of the patient to determine If the patient is currently sick with Lyme or (in the case of a patient considering stopping antibiotics for Lyme) to determine if the patient will relapse or not off the drugs. A score under 100 is suspicious for Lyme because it is the only infection that they know of that depletes cd57 cells. The cd57 count should be over 100, ideally up to 300 in a healthy person. The lower the score the more likely the patient has an active Lyme infection (ie undr 60). It is a measurement of how well the body is handling the lyme infection according to the doctors we have used. I would get it because a high cd57 plus Lyme symptoms suggest coinfections are the problem, not borelia. It must be done at labcorp and I have read that u can't do it on a Friday or saturday. Not sure about fri but better do it earlier in the week to ensure an accurate score. It comes back in two days sometimes. U will get two scores. The higher number is the one they look at and the lower number appears to be a percentage of the higher number. Don't have mine in front of me so I can't give you the details but feel free to pm me if u need help reading it.

[NancyD]

Well, so much for DD doing well. Tonight she's raging. First time in 5 months. This is the second day of Tindamax.

[sf_mom]

Nancy,

 

I can appreciate the rages... thankfully, our son is only three and for the most part we can handle him. MOTRIN, MOTRIN, MOTRIN..... if you can get it into them as they are ramping up. The rages will get better and further apart, I promise. We are over six weeks into Lyme treatment for our younger son and he has gotten much better. However, we just added the third antibiotic and anticipate it to get worse again.

 

Are you doing Tindamax daily? Some Dr.'s will recommend taking days off if it is too much. For example: Alinia 4 days on 3 days off... some do Tindamax just on the weekends, etc.

 

I'm so glad you are doing those tests!

 

-Wendy

[sf_mom]

Oops, see my post above.

[NancyD]

Wendy,

 

After living with rages for so many years it was nice not to have any for 5 months. At 14 it can be really ugly! For a while I was giving her 600 mg motrin bid for the anxiety/OCD but then when I started giving her 2 antibiotics I stopped because I was concerned how it would affect her stomach over an extended period. Particularly since she hardly eats any breakfast in the morning. I make her take a little yogurt or a banana. And now that she is on 3 abx daily...

 

She is taking the Tindamax twice daily. Maybe I'll give it a few days and if it continues to be a problem I'll email Dr. Bock and see if he will cut back on the Tindamax dosage.

 

Just dawned on me...she may have sneaked some candy at school today. If it had red or blue dye in it that would cause a rage with her. I'll ask her in the morning.

 

And I'll let you know when I get results to my tests. Thanks Wendy!

 

Nancy

 

Nancy,

 

I can appreciate the rages... thankfully, our son is only three and for the most part we can handle him. MOTRIN, MOTRIN, MOTRIN..... if you can get it into them as they are ramping up. The rages will get better and further apart, I promise. We are over six weeks into Lyme treatment for our younger son and he has gotten much better. However, we just added the third antibiotic and anticipate it to get worse again.

 

Are you doing Tindamax daily? Some Dr.'s will recommend taking days off if it is too much. For example: Alinia 4 days on 3 days off... some do Tindamax just on the weekends, etc.

 

I'm so glad you are doing those tests!

 

-Wendy

Edited November 2, 2010 by NancyD

[lyme_mom]

Thanks for this great explanation, Lyme Mom. I'm going to print it out and take it with me to the doctor tomorrow. My DD's DAN doctor also said Labcorp. So for me I will do IGX Basic Lyme Panel, Labcorp CD57, and then Myco P IgG and IgM (any lab for this).

 

Nancy

 

Nancy I was responding to Wendy's comment about the child getting a cd57 test.That makes sense Wendy that it can be an indication if very low in a child. Nancy, the antibody tests for Lyme only tell you if you have been exposed to Lyme but not whether you are currently sick with Lyme. The cd57 is used by llmds along with a clinical evaluation of the patient to determine If the patient is currently sick with Lyme or (in the case of a patient considering stopping antibiotics for Lyme) to determine if the patient will relapse or not off the drugs. A score under 100 is suspicious for Lyme because it is the only infection that they know of that depletes cd57 cells. The cd57 count should be over 100, ideally up to 300 in a healthy person. The lower the score the more likely the patient has an active Lyme infection (ie undr 60). It is a measurement of how well the body is handling the lyme infection according to the doctors we have used. I would get it because a high cd57 plus Lyme symptoms suggest coinfections are the problem, not borelia. It must be done at labcorp and I have read that u can't do it on a Friday or saturday. Not sure about fri but better do it earlier in the week to ensure an accurate score. It comes back in two days sometimes. U will get two scores. The higher number is the one they look at and the lower number appears to be a percentage of the higher number. Don't have mine in front of me so I can't give you the details but feel free to pm me if u need help reading it.

That;s great. Sorry about the rages. Tindamax was very hard. By the second day of it my son said he felt like he was dying. He took it on weekends for about 5 or 6 weeks. It kicks in by day 2 and then the effects seem to go away within a day or so after it is stopped. I think it may be why he got better but it was stressful.

[MichaelTampa]

What is a good resource to find info about muscle testing?

 

This is why muscle testing can be very helpful. It can confirm a diagnosis (such as lyme/bartonella/babesia for example) or it can unearth other possibilities. Of course insurance won't care about muscle testing :-) but when you are operating in the dark and you are very sick any intuition is helpful.

 

Others may have their own ideas, but here are a couple of mine. The type of practitioners I have seen use muscle testing the most is acupuncturists. You might try calling some and asking if they are familiar and willing to teach you. There are sometimes actual classes you can sign up for on the topic. Just got an email today from Dr. Klinghardt Academy saying he has classes coming up on that topic in New York. You might put "energy medicine" or "applied kinesiology" in a google search along with a word for classes or whatever. I have had an acupuncturist and LMHC who uses EFT and other energy-based techniques both try to teach me. I eventually learned to succeed at this with a pendulum, rather than using actual muscles.

[philamom]

Well, so much for DD doing well. Tonight she's raging. First time in 5 months. This is the second day of Tindamax.

Nancy-

My dd just took her 5th dose of Tindamax (Sat/Sun only). The first 2-3 weekends we had herxing. The last two times we saw much improvement (with the exception of the 5 day flair when exposed to strep).

[NancyD]

Glad to be prepared for what may come. We may have to cut back to weekends. One day at a time for now. DD had some nausea this morning but she took her pills on an empty stomach. I don't know how she does that.

 

I went for my blood work today and my internist was irritated that I wouldn't use her lab for the Lyme test. And she didn't know anything about Labcorp so instead of using her lab I decided to let IGX do the CD57.

 

That;s great. Sorry about the rages. Tindamax was very hard. By the second day of it my son said he felt like he was dying. He took it on weekends for about 5 or 6 weeks. It kicks in by day 2 and then the effects seem to go away within a day or so after it is stopped. I think it may be why he got better but it was stressful.

[NancyD]

That gives me great hope, PhilaMom!

 

Well, so much for DD doing well. Tonight she's raging. First time in 5 months. This is the second day of Tindamax.

Nancy-

My dd just took her 5th dose of Tindamax (Sat/Sun only). The first 2-3 weekends we had herxing. The last two times we saw much improvement (with the exception of the 5 day flair when exposed to strep).

[NancyD]

Just received my test results:

 

IGM:

30 +

39 IND

41 +

58 +

89-93 +

 

IGG:

31 IND

39 IND

41 ++++

45 +

 

CD57 is within normal range: 158 5.84%

 

Myco P IgM 0.41

Myco P IgG 4.12

[sf_mom]

Well your CD57 looks great but you obviously have a positive Lyme result. You o.k.?

 

- Wendy

[NancyD]

Wendy,

 

I'm still in excrutiating pain with my back and hip joints. I have been bed ridden for two days. I was not able to get an appointment to see anyone today so I took tylenol with codeine and motrin all day. Won't be fun driving to/from NY tomorrow to see DD's doctor. I emailed him my test results so hopefully he can recommend next steps tomorrow. My internist faxed over the results to me and there was no mention of treatment. All she said was "have to retest in 4-6 weeks." I wonder if she is going by CDC guidelines. I see her Monday and will relay what DD's doctor recommends. Hopefully she will work with him.

 

Is the CD57 usually accurate?? If so, why does it show normal range when I'm in so much pain...or could the back and hip pain be separate from the LD?

 

If we do genetic testing will that show if it's congenital?

 

Nancy

 

 

Well your CD57 looks great but you obviously have a positive Lyme result. You o.k.?

 

- Wendy