Lyme and Bartonella

[justinekno]

It was igg. Does it make a difference? I had lyme before I had my son so I am still trying to see if it's worth going down the road of having us both tested through igenex. We are about to do the Cunningham test so I am trying to figure out who to give my money to.

 

 

Was it igm or igg? You usually have band 41 if you have lyme disease but it is not in and of itself proof of lyme disease. If you could do the igenex test you could find out if your son has antibodies to bands 31 and 34 also. The Labcorp Western blot does not test for these important antibodies to Lyme Disease so it is like having half a lyme test. If your son has symptoms I would definitely get the igenex lyme test (test #s 188 and 189) and/or have an evaluation by an ilads doctor. Until they develop a better test, lyme will remain a a clinical diagnosis. Even the CDC says lyme is a clinical diagnosis and their two tiered testing is designed for reporting cases of lyme, not diagnosing it.

]

[lyme_mom]

It was igg. Does it make a difference? I had lyme before I had my son so I am still trying to see if it's worth going down the road of having us both tested through igenex. We are about to do the Cunningham test so I am trying to figure out who to give my money to.

 

 

Was it igm or igg? You usually have band 41 if you have lyme disease but it is not in and of itself proof of lyme disease. If you could do the igenex test you could find out if your son has antibodies to bands 31 and 34 also. The Labcorp Western blot does not test for these important antibodies to Lyme Disease so it is like having half a lyme test. If your son has symptoms I would definitely get the igenex lyme test (test #s 188 and 189) and/or have an evaluation by an ilads doctor. Until they develop a better test, lyme will remain a a clinical diagnosis. Even the CDC says lyme is a clinical diagnosis and their two tiered testing is designed for reporting cases of lyme, not diagnosing it.

]

Igm would indicate an active infection. It is crazy that you can't get good lyme test covered by insurance. You might be better off getting the cd57 test yourself and this is covered by insurance. It will give you an idea of whether you still have a problem with lyme. ( A low score is interpreted as a sign of an active infection. Igenex' test will only tell you if you have antibodies to lyme (and it would not be surprising that you do considering you have had it before). The only other thing the igenex would tell you is if you have igm antibodies to lyme, which would be a sign of an active infection. If I were you I'd just do it for your son to be sure lyme is not a factor in his symptoms.

[worriedmommy]

My dd had both IgG & IgM positive for band 41, and IgG positive on band 66. Of course, the test was not Igenex, so based on the Western blot we had done, her overall results are interpreted as negative for lyme.

 

What bothers me is that she's testing positive for ANYTHING. Am I missing something, or should a positive result for any band warrant further investigation?

 

How do I go about getting the Igenex test? What would I ask for? Also, how much does it cost?

[jjk4]

My dd had both IgG & IgM positive for band 41, and IgG positive on band 66. Of course, the test was not Igenex, so based on the Western blot we had done, her overall results are interpreted as negative for lyme.

 

What bothers me is that she's testing positive for ANYTHING. Am I missing something, or should a positive result for any band warrant further investigation?

 

How do I go about getting the Igenex test? What would I ask for? Also, how much does it cost?

 

Hi

I would encourage you to follow up on anything that is not sitting right with you....ruling out all tick born bacterias is so critical to getting our kids healthy. Thanks to LymeMom there is good information in previous threads on this post. Perhaps you can start by asking to have the IGENEX IgM and IgG Western Blot test done(188 and 189 for about $200). This will test for the Lyme bands left out of the CDC standard Western Blot testing. You can download the test script off the IGENEX web site. However, follow up with a Lyme literate doctor is really important to make sure all coinfections are addressed and that the proper meds are used for the proper duration. For us, this has made a big difference thus far. Good luck.

Joanne

[JTs-Mom]

Fixit - I did the complete panel for Lyme and coinfections. I think it was around $1100, but I don't think you need to start with all of those. Really, I think the western blot IGM and IGG would be a good start. My son has had motor tics for 2 years. He is 5.5 years old. We just started treatment about 3 weeks ago. His tics got worse at first (then came back down to their usual frequency). I have read that this is due to die off. So far, we have seen minimal improvement. Last fall, we saw very quick improvement on amoxicillin (for other things.... strep and URI), but not this time. I think the infection went deeper after those 2 bouts of abx, so it will be more difficult to get rid of now. I've heard from several other parents whose kids have motor tics... some have indicated the tics are gone or rare, while others have said the tics are still there even after years of abx, but are not nearly as prominent as they once were. My son's doc thinks he might have babesia, but we are focusing on the Lyme right now.

 

what test did you have done ?

how much was it?

HOw long did your son tic before you found infections?

how old is your son?

how long have you been treating him?

how much progress have you seen to this point?

I'm sorry ....did you have any co infections??

 

thanks

 

I just want to echo what Joanne has stated... be sure to consider Lyme when exploring the possibilities. My ds would have surely receieved a diagnosis of Tourettes if I had not pursued testing for infections based on info I had read on this board. He tested positive for Lyme through IgeneX, as well as mycoplasma pneumoniae through a different lab. His Lyme test is negative according to CDC criteria, yet he had positive bands on the western blot that are VERY specific for Lyme (31 and 34), that the CDC excludes. This is why it is important to use a specialty lab when testing for Lyme so that ALL of the relevant bands are reported.

 

When my son's motor tics started I didn't even think of Lyme, even though I knew he had tick bites 6 months prior. I had never heard of Lyme causing motor tics. Well... I now know, and have recently heard from quite a few parents, some on this board, and others on Lyme specific boards, whose kids have motor tics caused by Lyme. The good news is that they have all reported improvement on antibiotics, the bad news is that it can be a LONG road with Lyme and coinfections.

 

I am really beginning to think that infectious agents may be the root cause of many chronic issues, but many doctors are just too busy (or any number of other reasons) to look for them.

[worriedmommy]

All the tests are unreliable but some are better than others. If I were wondering whether to spend the money on a particular test like the Igenex Western blots (which cost 200) OR a visit to an ilads doctor, I would choose the latter. Lyme/Babesia/Bartonella are diagnosed based on symptoms, not test results. I cannot emphasize this enough.

 

The reason it is important to consider tick-borne illnesses is b/c lyme is the fastest growing infectious disease, ten times more common than AIDs. It should be the first infection to consider when a child has a mystery illness, not the last.

 

Are some ilads doctors NDs? I went on www.ilads.com and asked for a local recommendation. They provided a ND which is in my hometown. This is very convenient, but want opinions as to whether I'll benefit more or equally from an ND rather than an MD.

Edited April 7, 2010 by worriedmommy

[lyme_mom]

All the tests are unreliable but some are better than others. If I were wondering whether to spend the money on a particular test like the Igenex Western blots (which cost 200) OR a visit to an ilads doctor, I would choose the latter. Lyme/Babesia/Bartonella are diagnosed based on symptoms, not test results. I cannot emphasize this enough.

 

The reason it is important to consider tick-borne illnesses is b/c lyme is the fastest growing infectious disease, ten times more common than AIDs. It should be the first infection to consider when a child has a mystery illness, not the last.

 

Are some ilads doctors NDs? I went on www.ilads.com and asked for a local recommendation. They provided a ND which is in my hometown. This is very convenient, but want opinions as to whether I'll benefit more or equally from an ND rather than an MD.

An ND would be excellent. I assume he or she is able to prescribe antibiotics to treat lyme. Good luck!

[MichaelTampa]

Just want to chime in with a few comments here.

 

On the muscle testing, reading the Insights into Lyme Disease Treatment, yes, even some doctors now use muscle testing or energy testing or kinesiology, whatever you want to call it, to help with diagnosis. I have an NAET practitioner, they have vials for everything, including lyme and various coinfections, and antibodies to lyme as well. I always got a positive response from treating these, which we wouldn't have done if they didn't test as "allergic". Bartonella worse than lyme (borrelia), lyme worse than mycoplasma pneumonia, myco-p worse than strep. It gives a real clue for what is going on. So much faster and cheaper than all those blood tests and, in my opinion, at least as reliable. Given the reliability of the blood tests, these just seem more valuable.

 

Also, the CD57 test, must go to labcorp blood draw, can be good diagnostic tool as well when whatever the problem/infection is has been around for a long time, too low is likely from borrelia, but I also have heard for children the test is not worthwhile. So, maybe for adults. I just had this test a couple weeks ago and the results came back in 1 or 2 days, not sure the costs, it was a specialty test from a different company that labcorp purchased.

 

Really, my recommendation for those struggling with diagnosis and treatment of PANDAS/lyme/other neurological issues, as they all look so much the same, is consider a quick NAET-style muscle test if you can do it quickly, but really, waste your time with tests only as much as you need to in order to get a serious ILADS doctor to do an evaluation. Where I live, the ILADS doctor requires a referral, which means convincing a primary MD that the situation is worth referring to him, so my tests were important to get that going. But without that requirement, the waiting for tests can be just a waste of time and money.

 

Finally had my ILADS MD first visit yesterday, gearing up to treat lyme, a few more tests as he is a little suspicious of other things, why negative IGG on all these viruses that 70% of 42 year olds would have (body not making immunoglobulin, would IVIG be helpful?), what is that body odor telling us about what other infection I possibly have, what is that white stuff inside my nose that doesn't look like it's from allergies, so on, so forth, so, a few more investigations and tests, but gearing up for some serious hard-core treatment. Wish he had done some hormone tests, as I read that can be very important for lyme, and going to ask my primary MD tomorrw if he will do that. You will note some similarities in treatment with PANDAS, even the consideration of IVIG, it comes down to some infection and immune problem, and an ILADS MD in the Infectious Disease treatment specialty seems very well placed to investigate and treat whatever it is with all the tools.

 

Some symptoms that have already lessened a lot from herbal lyme treatments are itchy skin and funny creepy-crawly feelings about 1 inch under my skin. Never considered the itchy skin as a symptom, just a nuisance, as so many more significant/painful things were going on. But, in retrospect, see that as quite a clue. Don't see itchy skin listed a lot as a lyme or PANDAS symptom, but thought I'd just point it out. The creepy-crawly feelings do sometimes make me jerk my legs, yet could still be different than a TS type movement, in that I don't have to do it, but it just feels so uncomfortable and it helps to move it. Sorry, that probably makes no sense, very difficult to find the right words to describe that.

 

Personally, very busy gearing up for new treatments, including new supplement and home treatment regimen, have not been here a lot, likely will not have as much time going forward. Kind of miss you guys and wish you all the best, and very thankful for all the help, not saying goodbye, I'll stop in here and there, but really focusing on lyme and just very busy from it. If anyone has questions/comments they are really hoping I see, PM will be the way to go, will be happy to respond.

 

Michael

[Fixit]

Micheal...i will miss you!!!!!!

 

creepy crawly thing, is what my son says is under his skin!!!!

 

I wish you ALL the best...you do what you need too.....BUT once you are better...you better come back and tell us all about it....as a recovering ANDAS/ITANDS patient!!!!!!!!!!!

 

God Bless!!!!

 

 

 

Just want to chime in with a few comments here.

 

On the muscle testing, reading the Insights into Lyme Disease Treatment, yes, even some doctors now use muscle testing or energy testing or kinesiology, whatever you want to call it, to help with diagnosis. I have an NAET practitioner, they have vials for everything, including lyme and various coinfections, and antibodies to lyme as well. I always got a positive response from treating these, which we wouldn't have done if they didn't test as "allergic". Bartonella worse than lyme (borrelia), lyme worse than mycoplasma pneumonia, myco-p worse than strep. It gives a real clue for what is going on. So much faster and cheaper than all those blood tests and, in my opinion, at least as reliable. Given the reliability of the blood tests, these just seem more valuable.

 

Also, the CD57 test, must go to labcorp blood draw, can be good diagnostic tool as well when whatever the problem/infection is has been around for a long time, too low is likely from borrelia, but I also have heard for children the test is not worthwhile. So, maybe for adults. I just had this test a couple weeks ago and the results came back in 1 or 2 days, not sure the costs, it was a specialty test from a different company that labcorp purchased.

 

Really, my recommendation for those struggling with diagnosis and treatment of PANDAS/lyme/other neurological issues, as they all look so much the same, is consider a quick NAET-style muscle test if you can do it quickly, but really, waste your time with tests only as much as you need to in order to get a serious ILADS doctor to do an evaluation. Where I live, the ILADS doctor requires a referral, which means convincing a primary MD that the situation is worth referring to him, so my tests were important to get that going. But without that requirement, the waiting for tests can be just a waste of time and money.

 

Finally had my ILADS MD first visit yesterday, gearing up to treat lyme, a few more tests as he is a little suspicious of other things, why negative IGG on all these viruses that 70% of 42 year olds would have (body not making immunoglobulin, would IVIG be helpful?), what is that body odor telling us about what other infection I possibly have, what is that white stuff inside my nose that doesn't look like it's from allergies, so on, so forth, so, a few more investigations and tests, but gearing up for some serious hard-core treatment. Wish he had done some hormone tests, as I read that can be very important for lyme, and going to ask my primary MD tomorrw if he will do that. You will note some similarities in treatment with PANDAS, even the consideration of IVIG, it comes down to some infection and immune problem, and an ILADS MD in the Infectious Disease treatment specialty seems very well placed to investigate and treat whatever it is with all the tools.

 

Some symptoms that have already lessened a lot from herbal lyme treatments are itchy skin and funny creepy-crawly feelings about 1 inch under my skin. Never considered the itchy skin as a symptom, just a nuisance, as so many more significant/painful things were going on. But, in retrospect, see that as quite a clue. Don't see itchy skin listed a lot as a lyme or PANDAS symptom, but thought I'd just point it out. The creepy-crawly feelings do sometimes make me jerk my legs, yet could still be different than a TS type movement, in that I don't have to do it, but it just feels so uncomfortable and it helps to move it. Sorry, that probably makes no sense, very difficult to find the right words to describe that.

 

Personally, very busy gearing up for new treatments, including new supplement and home treatment regimen, have not been here a lot, likely will not have as much time going forward. Kind of miss you guys and wish you all the best, and very thankful for all the help, not saying goodbye, I'll stop in here and there, but really focusing on lyme and just very busy from it. If anyone has questions/comments they are really hoping I see, PM will be the way to go, will be happy to respond.

 

Michael