Sympathetic symptoms, old age, or LD?

[NancyD]

I don't know if I am having sympathetic symptoms, getting old, or experiencing LD myself, but in addition to being very fatigued I have been having terrible joint stiffness and pain in my knees and hips in the past week. Climbing up stairs has become very difficult as well as finding a comfortable position in bed. I planned to have the IGX test done when I see my internist end of November just to rule in or out congenital LD for my DD but now I think I better get it done this week. I thought the joint stiffness and pain associated with LD was intermittent. Mine seems to be constant. And it came on so quickly. Anyone else experience this?

 

Nancy

[sf_mom]

Oh Geez Nancy... Do I need to say anything!!!!!!!!!!!!!!!!!! Hmmm, I can't remember the specific of our prior bet but it was something about a bottle of wine. Can we double the bet?

 

-Wendy

[NancyD]

Wendy,

 

I think it was double or nothing that I have either LD or Myco P. Regardless, I have a very nice bottle of Pinot Noir picked out for you. May have to up it to two bottles!

 

Yesterday my daughter found a deer tic on her clothing after riding her horse cross country. Really freaked us both out!

 

She's doing well on the zithro. A bit more irritable and a lot more fatigued but nothing major thus far. Also some stomach aches and nausea. It's taken a week to get the Tindamax and Diflucan compounded dye-free but she starts that tomorrow.

 

After seeing the posts recently about Theralac I decided to try her on that. It's only been two days but so far so good. I am not seeing the hyperactivity and mood dysregulation I have seen with so many other probiotics. That is why I have kept her on bifido factor for so many years, but now that she is on 3 different abx I thought I should try it.

 

Should I do the basic Lyme panel through IGX and check Myco P levels now and save the co-infection panel for down the road? Any reason I should be spending so much more on the complete Lyme panel for myself? Since Babesia and Bartonella came out negative for DD (I know we have to check it again later) I thought we could check ours together down the road. Wanted to minimize the cost as best we can, particularly if we get in to see Ann Corson in 6 months. She has her own specialized tests with IGX, I was told. 

 

Nancy

[sf_mom]

Yes, just do the basic WB via Igenex for $260.00 and mycoplasma levels. No need at this time to do further co-infection panels.

 

I know the feeling about about finding a TIC.... the one tic we've seen since living in CA was this summer. Pulled if off my daughter's head. I was so freaked out that I didn't even think to keep it for testing. Thankfully she was not bitten.

 

I'm glad to know you daughter is tolerating the Azithro. I suspect the irritability and fatigue are symptoms of die-off building. I'll be interested to find out how it builds.

 

-Wendy

[Iowadawn]

Our lyme doc just had me run the IGeneX WB IgG & IgM panels. That was $200. Enough savings to buy another (BIG) bottle of wine for Wendy & a case of Diet Coke for me! Dawn

[Suzan]

Wendy, you will be set in the wine drinking after we all have to pay up. Luckily your memory is so poor right now! You may not remember everyone who owes you!

 

Nancy, good luck with the testing. I think your chances are pretty high from what I've heard with this group and what you describe with symptoms!

 

Susan

[lyme_mom]

Wendy,

 

I think it was double or nothing that I have either LD or Myco P. Regardless, I have a very nice bottle of Pinot Noir picked out for you. May have to up it to two bottles!

 

Yesterday my daughter found a deer tic on her clothing after riding her horse cross country. Really freaked us both out!

 

She's doing well on the zithro. A bit more irritable and a lot more fatigued but nothing major thus far. Also some stomach aches and nausea. It's taken a week to get the Tindamax and Diflucan compounded dye-free but she starts that tomorrow.

 

After seeing the posts recently about Theralac I decided to try her on that. It's only been two days but so far so good. I am not seeing the hyperactivity and mood dysregulation I have seen with so many other probiotics. That is why I have kept her on bifido factor for so many years, but now that she is on 3 different abx I thought I should try it.

 

Should I do the basic Lyme panel through IGX and check Myco P levels now and save the co-infection panel for down the road? Any reason I should be spending so much more on the complete Lyme panel for myself? Since Babesia and Bartonella came out negative for DD (I know we have to check it again later) I thought we could check ours together down the road. Wanted to minimize the cost as best we can, particularly if we get in to see Ann Corson in 6 months. She has her own specialized tests with IGX, I was told. 

 

Nancy

 

In your case to save money our llmd would recommend that you start with the labcorp western blot and the cd57 test, both of which are covered by insurance. (The cd57 would does not work for a child). If the patient happens to get a positive labcorp test or a low cd57 score (under 100-the lower the number the more likely it is lyme) then they do not need the igenex test to prove they have lyme disease. My sister got a positive labcorp test so she did not have to do igenex testing. Igenex testing should be pursued if you get a negative result on the labcorp WB b/c this test is falsely negative 50% of the time. This is hard for some patients to believe when they are looking at a negative test result so this is why most llmds probably start with igenex. Also a llmd will treat based on symptoms and monitor the progress to see if it is working. If you are going to need a picc line (which is not necessary in most cases) then a clearly positive test result is very helpful or else insurance may not cover it. There are some coinfection tests that are covered by insurance too that are worth doing if your symptoms suggest one or another coinfection (sweats, air hunger, thigh cramps, calf pain, sore soles of the feet, etc.). So much of diagnosing these infections is educated guesswork b/c the tests are so unreliable. 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.

[philamom]

Wendy,

 

I think it was double or nothing that I have either LD or Myco P. Regardless, I have a very nice bottle of Pinot Noir picked out for you. May have to up it to two bottles!

 

Yesterday my daughter found a deer tic on her clothing after riding her horse cross country. Really freaked us both out!

 

She's doing well on the zithro. A bit more irritable and a lot more fatigued but nothing major thus far. Also some stomach aches and nausea. It's taken a week to get the Tindamax and Diflucan compounded dye-free but she starts that tomorrow.

 

After seeing the posts recently about Theralac I decided to try her on that. It's only been two days but so far so good. I am not seeing the hyperactivity and mood dysregulation I have seen with so many other probiotics. That is why I have kept her on bifido factor for so many years, but now that she is on 3 different abx I thought I should try it.

 

Should I do the basic Lyme panel through IGX and check Myco P levels now and save the co-infection panel for down the road? Any reason I should be spending so much more on the complete Lyme panel for myself? Since Babesia and Bartonella came out negative for DD (I know we have to check it again later) I thought we could check ours together down the road. Wanted to minimize the cost as best we can, particularly if we get in to see Ann Corson in 6 months. She has her own specialized tests with IGX, I was told. 

 

Nancy

 

In your case to save money our llmd would recommend that you start with the labcorp western blot and the cd57 test, both of which are covered by insurance. (The cd57 would does not work for a child). If the patient happens to get a positive labcorp test or a low cd57 score (under 100-the lower the number the more likely it is lyme) then they do not need the igenex test to prove they have lyme disease. My sister got a positive labcorp test so she did not have to do igenex testing. Igenex testing should be pursued if you get a negative result on the labcorp WB b/c this test is falsely negative 50% of the time. This is hard for some patients to believe when they are looking at a negative test result so this is why most llmds probably start with igenex. Also a llmd will treat based on symptoms and monitor the progress to see if it is working. If you are going to need a picc line (which is not necessary in most cases) then a clearly positive test result is very helpful or else insurance may not cover it. There are some coinfection tests that are covered by insurance too that are worth doing if your symptoms suggest one or another coinfection (sweats, air hunger, thigh cramps, calf pain, sore soles of the feet, etc.). So much of diagnosing these infections is educated guesswork b/c the tests are so unreliable. 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.

A friend of mine is wondering if she could run the cd57 test on her high school age child. Can she?

[lyme_mom]

I think so but I dont know the cutoff. My friend's 15 ir 16 year old daughter had a cd57 done by my llmd.

[sf_mom]

They are following CD57 on my friend's son who is 7. Her Dr. is Dr. S the guy the test is named after 'hint, hint'. They have also run additional test when making diagnoses. I am not sure why its considered unreliable in children.

 

-Wendy

[NancyD]

I think I will go with the IGX Basic Lyme Test and Myco P levels. I just received back 53% refund from our insurance for my DD's IGX testing so that helps a lot.

 

Should I be doing CD57 from Labcorp too?

 

Susan and Dawn, I laughed at your comments re wine for Wendy!

 

Nancy

[sf_mom]

Not only is my memory bad and my alcohol tolerance is way down...... AND, I love a good glass of wine. PARTY.... when everyone is well!!!

 

Nancy: I meant to say my knee and hip pain was mostly when sleeping. It made it very difficult to sleep 'at times' and typically had a pillow between my knees. If I got a cold or exercised the pain was more consistent and sometimes would last a week or two before moving on to another area or relenting. My left knee and lower back have been the most bothersome in the last year.

 

I don't think it would hurt to do the cd57 since its covered by insurance. It will definitely help when interpreting other test results.

 

-Wendy

[lyme_mom]

That's odd because dr jones and my llmd say that the cd57 does not work on kids. I am inclined to believe this because my first llmd used it on my then ten year old who was very sick with Lyme at the time and he got a score of 400, which is very high. As u know anything under 100 is suspicious of lyme so 400 would not suggest an active Lyme infection. This was when he was first diagnosed when he was sickest. His Lyme tests were glowing- the elisa and the igenex tests too.

[NancyD]

I think Wendy was responding to my question about whether I should have the CD57 done, not my DD.

 

That's odd because dr jones and my llmd say that the cd57 does not work on kids.

 

 

YES, my hip and knee joint pain is worse when lying in bed. I can't seem to find a comfortable position!

 

Thanks Wendy. I'll go ahead and do the CD57. Going for testing in the morning.

 

P.S. Maybe we should all get a glass of wine and have a skype party!

 

Nancy: I meant to say my knee and hip pain was mostly when sleeping. It made it very difficult to sleep 'at times' and typically had a pillow between my knees. If I got a cold or exercised the pain was more consistent and sometimes would last a week or two before moving on to another area or relenting. My left knee and lower back have been the most bothersome in the last year.

 

I don't think it would hurt to do the cd57 since its covered by insurance. It will definitely help when interpreting other test results.

 

-Wendy

[sf_mom]

I have heard this too but maybe they are doing with my friend's son because its an indication ONLY.... since his numbers are low.

 

-Wendy