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I just received my packet from IGenex to order the Lyme testing. Help! The order form looks sooo intimidating. Can anyone suggest which tests are the best ones to order without breaking the bank! My son and I are both getting tested.

 

You could start with the IgM and IgG Western Blot (box 188 and 189 on page 2 of the form) for $200. However, if this comes back showing exposure, further testing for co infections would be indicated and interpetation from a Lyme literate doctor very important. Good luck!

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I'm wondering if you can test negative for Western Blot but still be positive for the co-infections.

 

I just received my packet from IGenex to order the Lyme testing. Help! The order form looks sooo intimidating. Can anyone suggest which tests are the best ones to order without breaking the bank! My son and I are both getting tested.

 

You could start with the IgM and IgG Western Blot (box 188 and 189 on page 2 of the form) for $200. However, if this comes back showing exposure, further testing for co infections would be indicated and interpetation from a Lyme literate doctor very important. Good luck!

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Please call Igenex and ask for their advice. They will make test suggestions based on where you live, or where you think your exposure may have been.

 

Yes, it's possible to be positive for one of the other coinfections, but not for lyme. However, lyme testing is usually a good place to start. Do as much testing out of the gate as you are able to afford. It's always a pain to go back for more blood draws and multi-week wait times on results.

 

Looks like you are in New England, so you are in an area where you can see a lyme literate doctor. Contact ILADS.org and ask for referral. Or, go to http://flash.lymenet.org/scripts/ultimatebb.cgi and post under "seeking a doctor" for your state, and people will reply.

 

Make an appointment today! There are sometimes long wait times. Seriously, the right lyme doctor will get you going on the correct antibiotic protocol -- usually a combo -- that could make all the difference in the world.

Do the testing in the meantime.

 

PLEASE: Any of you in any New England State; mid/south east state; Maryland, Virginia, Pennsylvania, OH, MI, WI, MN and any Pacific region should be seriously considering that this is what you are dealing with.

But lyme and/or any of the coinfections are found in every state in the U.S.

 

I CAN'T SAY IT ENOUGH TIMES: these are the doctors that are very well versed in antibiotics, and their use in erradicating persistent infections.

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I had Lyme 16 years ago (while living near Lyme, CT) but was treated with only 2 weeks of Doxycycline. I am working with Dr. B. to see if perhaps I passed Lyme to my son in utero. My CD57 was low (25) but from what I've read, that's not always an accurate indication. If we need to move to a Lyme literate dr (ILADS only gave me two names of which one is not a MD but a holistic Dr) but we may try to consult with Dr. Jones if necessary. My son and I both developed a rash when put on antibiotics recently so I really want to find out what is going on before we proceed to IVIG.

 

I'll give IGenex a call.

 

Please call Igenex and ask for their advice. They will make test suggestions based on where you live, or where you think your exposure may have been.

 

Yes, it's possible to be positive for one of the other coinfections, but not for lyme. However, lyme testing is usually a good place to start. Do as much testing out of the gate as you are able to afford. It's always a pain to go back for more blood draws and multi-week wait times on results.

 

Looks like you are in New England, so you are in an area where you can see a lyme literate doctor. Contact ILADS.org and ask for referral. Or, go to http://flash.lymenet.org/scripts/ultimatebb.cgi and post under "seeking a doctor" for your state, and people will reply.

 

Make an appointment today! There are sometimes long wait times. Seriously, the right lyme doctor will get you going on the correct antibiotic protocol -- usually a combo -- that could make all the difference in the world.

Do the testing in the meantime.

 

PLEASE: Any of you in any New England State; mid/south east state; Maryland, Virginia, Pennsylvania, OH, MI, WI, MN and any Pacific region should be seriously considering that this is what you are dealing with.

But lyme and/or any of the coinfections are found in every state in the U.S.

 

I CAN'T SAY IT ENOUGH TIMES: these are the doctors that are very well versed in antibiotics, and their use in erradicating persistent infections.

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Yes, you can be positive for co-infections and not Lyme. Start with your son first and if he is positive for Lyme/co-infection get to a LLD....... then discuss your symptoms with that Dr. to determine if you need testing too.

Edited by SF Mom
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We are in Southern California, but vacation each summer in Arkansas and Philadelphia/NJ and Florida (scattered grandparents).

 

I have been bitten by ticks in Little Rock, but have not gotten infected, as far as I know.

 

My DS9 is primarily tics. It has been going on for 5 years.

 

Do you think Lyme testing makes sense?

 

Thanks

 

 

 

Please call Igenex and ask for their advice. They will make test suggestions based on where you live, or where you think your exposure may have been.

 

Yes, it's possible to be positive for one of the other coinfections, but not for lyme. However, lyme testing is usually a good place to start. Do as much testing out of the gate as you are able to afford. It's always a pain to go back for more blood draws and multi-week wait times on results.

 

Looks like you are in New England, so you are in an area where you can see a lyme literate doctor. Contact ILADS.org and ask for referral. Or, go to http://flash.lymenet.org/scripts/ultimatebb.cgi and post under "seeking a doctor" for your state, and people will reply.

 

Make an appointment today! There are sometimes long wait times. Seriously, the right lyme doctor will get you going on the correct antibiotic protocol -- usually a combo -- that could make all the difference in the world.

Do the testing in the meantime.

 

PLEASE: Any of you in any New England State; mid/south east state; Maryland, Virginia, Pennsylvania, OH, MI, WI, MN and any Pacific region should be seriously considering that this is what you are dealing with.

But lyme and/or any of the coinfections are found in every state in the U.S.

 

I CAN'T SAY IT ENOUGH TIMES: these are the doctors that are very well versed in antibiotics, and their use in erradicating persistent infections.

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Sorry, I didn't read all the post prior to responding above.

 

I also wanted to add that my girlfriend's son had RF and is positive for Bartonella and Ehrlichia but not Lyme. He was so sick but could have easily been misdiagnosed with Aspberger's. My friend grew up on a dairy farm on the border of WI and MN and had at least 20 farrow cats at any given time. She too will be testing herself. Currently she has high liver enzymes which is indicative of Ehrlichia.

 

If my DD3 comes back positive for Lyme I will definitely test myself. I've had Fibromyalgia symptoms since my first pregnancy, had PUPPS with both pregnancy (itchy rash over my entire body and was treated with steroids) and I'm originally from MN. Plus, most of my Fibromyalia symptoms resolved after a month long of antibiotics last November.

Edited by SF Mom
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We are in Southern California, but frequently vacation (especially in the summer) in Arkansas and Philadelphia/NJ and Florida (scattered grandparents).

 

I have been bitten by ticks in Little Rock, but have not gotten infected, as far as I know.

 

My DS9 PANDAS is primarily tics. It has been going on for 5 years.

 

Do you think Lyme testing makes sense?

 

Thanks

 

 

 

Please call Igenex and ask for their advice. They will make test suggestions based on where you live, or where you think your exposure may have been.

 

Yes, it's possible to be positive for one of the other coinfections, but not for lyme. However, lyme testing is usually a good place to start. Do as much testing out of the gate as you are able to afford. It's always a pain to go back for more blood draws and multi-week wait times on results.

 

Looks like you are in New England, so you are in an area where you can see a lyme literate doctor. Contact ILADS.org and ask for referral. Or, go to http://flash.lymenet.org/scripts/ultimatebb.cgi and post under "seeking a doctor" for your state, and people will reply.

 

Make an appointment today! There are sometimes long wait times. Seriously, the right lyme doctor will get you going on the correct antibiotic protocol -- usually a combo -- that could make all the difference in the world.

Do the testing in the meantime.

 

PLEASE: Any of you in any New England State; mid/south east state; Maryland, Virginia, Pennsylvania, OH, MI, WI, MN and any Pacific region should be seriously considering that this is what you are dealing with.

But lyme and/or any of the coinfections are found in every state in the U.S.

 

I CAN'T SAY IT ENOUGH TIMES: these are the doctors that are very well versed in antibiotics, and their use in erradicating persistent infections.

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My son developed a rash as well when he started antibiotic treatment. After 2 high dose IVIG's and 4 or 5 small dose IVIG's, we discovered he has lyme disease. I agree with Pacific Mom to test right away because the lyme treatment has really helped my son! He still has rough days and he still has quite a bit of healing left, but he has not had a complete relapse with the lyme treatment like we saw with just the PANDAS treatment of IVIG and low dose antibiotics.

 

And Justine, I think it would be goosd for you to test yourself since you did have lyme 16 years ago and your CD 57 is low. Many people consider a CD 57 below 100 to be indicative of lyme disease. And it appears that lyme is often misdiagnosed as other autoimmune illnesses, such as Lupus and MS.

 

Again, I would only do the IGENEX lyme testing since they test for more lyme bands.

 

Elizabeth

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Another mother wanted me to add:

 

IgeneX holds the blood sample for 3 months, so if you want to wait to order co-infections after receiving results of Lyme Panel, you just need your physician to fax over another slip.

 

This particular mother's daughter is very PANDAS-ish and never would have guessed in million years her daughter was positive for Lyme. So, now after 3 hdIVIGs, one year of treatment, they are off to LLD and awaiting co-infection panel results.

 

I think you absolutely need to rule out Lyme/co-infections prior to a PANDAS diagnoses because antibiotic treatment is key to the child's successful recovery.

 

-Wendy

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Yes, that form sure is a tough read, isn't it! I think the two western blots are the must-get ones. The lyme and various coinfection antibody ones seem like maybes to me. I did the antibody tests for borrelia, bartonella (symptoms like PANDAS), and rickettsia (I had recently read a years-old test result from a biofeedback machine that mentioned it was a problem), and now regret "wasting the money" because they were negative.

 

My goodness, with the CD57 that low as an adult, if you have lyme symptoms, some would take that as evidence enough that you are struggling with at least borrelia. But, your lyme doc could easily want to see more, so the western blots are still good to do. I'd consider the antibodies for borrelia and any coinfection that your symptoms look like (for example, the bartonella and PANDAS symptom lists look quite similar), but it is just a tough call. The borrelia antibody test will likely not add anything to the picture. Regarding the coinfections, some docs, once they decide you have lyme, may devise treatment plan for borrelia and/or coinfections based on symptoms, so, another way to look at it is, why confirm bartonella if you have those symptoms, you'll get treated for it whether the test result is positive or negative (too many false negatives), so what value was the test? If anything, the coinfection tests might have value to find a coinfection that it doesn't look like you have, if you are struggling later with treatment.

 

There are other ways to diagnose. My NAET practitioner got all the lyme and coinfection vials, and muscle tested them. The ones I tested as strong (not a problem), weak (a problem), really weak (major problem) for, all coincided with conclusions of my lyme doc and symptoms, so remember there are other ways to get hints as to what is going on. Of course, not all doctors will buy in, and it is important to do what your doctor needs so you get the right treatment.

 

Hope all this rambling somehow helped rather than getting you more confused.

 

Michael

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Thank you to everyone for your replies. I spoke with IGenex and explained our story and where we live. They recommend the Western Blots to begin with but said to check with my dr to see what is best. Oh, the other thing they told me was that you only need to be off of antibiotics for 10 days if you are doing the pcr tests (whatever the heck those are!).

 

SF Mom - Thank you for the info about IGenex holding onto the blood for 3 months. It's nice to have that as an option.

 

Elizabeth - what did your son's rash look like? Our's is primarily on the arms (you can feel it more than see it) and is starting to go away now that we are both off of antibiotics.

 

I just received my packet from IGenex to order the Lyme testing. Help! The order form looks sooo intimidating. Can anyone suggest which tests are the best ones to order without breaking the bank! My son and I are both getting tested.

Edited by justinekno
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Oops.

 

I didn't know about the antibiotics. Do you have to be off of them for the other tests also?

 

Thank you to everyone for your replies. I spoke with IGenex and explained our story and where we live. They recommend the Western Blots to begin with but said to check with my dr to see what is best. Oh, the other thing they told me was that you only need to be off of antibiotics for 10 days if you are doing the pcr tests (whatever the heck those are!).

 

SF Mom - Thank you for the info about IGenex holding onto the blood for 3 months. It's nice to have that as an option.

 

Elizabeth - what did your son's rash look like? Our's is primarily on the arms (you can feel it more than see it) and is starting to go away now that we are both off of antibiotics.

 

I just received my packet from IGenex to order the Lyme testing. Help! The order form looks sooo intimidating. Can anyone suggest which tests are the best ones to order without breaking the bank! My son and I are both getting tested.

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