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Has anyone tested negative on IGNEX?


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Thank you for posting this. What website is this from?

 

 

Deet for the kids when playing outside and spraying yard for tics. Others might chime in with more.

Dr. Kenneth Singleton addresses this question in his book The Lyme Disease Solution. He recommends Avon's Bugguard Plus with Picaridin, not deet. Deet is toxic and it is unclear whether it really works for ticks according to what I have read. Any natural tick repellent (like from whole foods) is probably fine too.

 

These are suggestions for things you can do to protect your family:

 

1. Wear a tick repellent whenever you are outside on grass, in the woods or on the soccer field. Avon’s Bug Guard Plus Picaridin repellent is recommended by lyme experts. Deet is toxic and is not recommended for application to skin. Some believe that products containing deet actually attract ticks.

2. Wear a hat when outside in an area near ticks to limit a tick’s access to your head.

3. Tie back long hair so it is harder for a tick to get swept into your hair.

4. Consider treating clothes, hats and shoes with Permethrin, a chemical that kills ticks, especially when going hiking or camping in a high-risk area. Permethrin is toxic and must be handled very carefully but it can provide an extra level of protection.

5. Wear long light-colored pants tucked into socks while in the woods or in areas with a lot of ticks.

6. Wash you hair with a peppermint or tea tree oil shampoo that repels ticks. Experienced campers recommend using Desert Essence Therapeutic Treatment Shampoo for treatment of head lice (available at Whole Foods) prior to camping to prevent tick attachment on the scalp.

7. Perform complete tick checks during tick season (which is most of the year in Maryland-March to November). Experts recommend that you check every few hours but at the very least check your kids before they go to bed! Keep a tick kit in your car in case you need it on the go.

Ticks like to attach to parts of the body that you might not be able to see well such as under arms, behind knees, on the head, behind the ear or in the groin area.

8. Don’t expect to feel a tick bite. Ticks inject you with a numbing substance so you do not usually feel the bite.

9. Carefully remove ticks with a tweezer or other tick remover (such as this device that veterinarians recommend: http://www.rei.com/product/407279) and clean area with an antiseptic. Wear gloves and do not use Vaseline or a match. The State of Maryland provides instructions here: http://www.cha.state.md.us/edcp/vet_med/ld_prevent.cfm#remove.

10. Save any tick you remove in an airtight container. You can have it tested for Lyme Disease and/or other tick-borne illnesses later if you or your child get sick. This really helps with any future treatment should you get sick. Note the date and location of the bite. Many states offer tick-testing for Lyme Disease and Igenex Labs in California (http://igenex.com/Website/) will test ticks for Lyme Disease as well as other tick-borne diseases for a fee. Given how unreliable the patient testing is, knowing what diseases the attached tick carried can help the doctor decide which treatment is best.

11. Don’t track ticks in the house. Ticks can get into your house on shoes, pets or clothing worn outside. Keep your shoes by the door so they don’t track ticks into your house. Put clothing (or sleeping bags from camping) that might have ticks on it in the dryer for 30 minutes to kill any ticks. It is risky to sleep with any animal that spends time outside, even if the pet is treated with tick medicine. Ticks can hitch a ride in on the pet and fall off inside.

12. Tick-proof your yard. Get rid of brush and fallen leaves, move wood piles away from play areas, keep the grass cut and treat your yard with pesticides (natural or synthetic) to kill the ticks. The CDC has these and other recommendations you can follow: http://www.lymediseaseassociation.org/. Naturalawn of America offers a natural tick treatment that kills ticks that they recommend applying from March through October. There are also a number of natural tick repellents you can apply yourself that you can buy on-line or at your local garden center. A combination of these approaches along with the tick repellent can significantly reduce the risk of ticks. Daminex sells Tick Tubes, cardboard tubes filled with cotton balls soaked in Permethrin that kill ticks on mice without harming the mice. You can also make your own tick tubes using PVC, old carpet or other material and Permethrin. http://www.ticktubes.com/

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Thank you for posting this. What website is this from?

 

 

Deet for the kids when playing outside and spraying yard for tics. Others might chime in with more.

Dr. Kenneth Singleton addresses this question in his book The Lyme Disease Solution. He recommends Avon's Bugguard Plus with Picaridin, not deet. Deet is toxic and it is unclear whether it really works for ticks according to what I have read. Any natural tick repellent (like from whole foods) is probably fine too.

 

These are suggestions for things you can do to protect your family:

 

1. Wear a tick repellent whenever you are outside on grass, in the woods or on the soccer field. Avon’s Bug Guard Plus Picaridin repellent is recommended by lyme experts. Deet is toxic and is not recommended for application to skin. Some believe that products containing deet actually attract ticks.

2. Wear a hat when outside in an area near ticks to limit a tick’s access to your head.

3. Tie back long hair so it is harder for a tick to get swept into your hair.

4. Consider treating clothes, hats and shoes with Permethrin, a chemical that kills ticks, especially when going hiking or camping in a high-risk area. Permethrin is toxic and must be handled very carefully but it can provide an extra level of protection.

5. Wear long light-colored pants tucked into socks while in the woods or in areas with a lot of ticks.

6. Wash you hair with a peppermint or tea tree oil shampoo that repels ticks. Experienced campers recommend using Desert Essence Therapeutic Treatment Shampoo for treatment of head lice (available at Whole Foods) prior to camping to prevent tick attachment on the scalp.

7. Perform complete tick checks during tick season (which is most of the year in Maryland-March to November). Experts recommend that you check every few hours but at the very least check your kids before they go to bed! Keep a tick kit in your car in case you need it on the go.

Ticks like to attach to parts of the body that you might not be able to see well such as under arms, behind knees, on the head, behind the ear or in the groin area.

8. Don’t expect to feel a tick bite. Ticks inject you with a numbing substance so you do not usually feel the bite.

9. Carefully remove ticks with a tweezer or other tick remover (such as this device that veterinarians recommend: http://www.rei.com/product/407279) and clean area with an antiseptic. Wear gloves and do not use Vaseline or a match. The State of Maryland provides instructions here: http://www.cha.state.md.us/edcp/vet_med/ld_prevent.cfm#remove.

10. Save any tick you remove in an airtight container. You can have it tested for Lyme Disease and/or other tick-borne illnesses later if you or your child get sick. This really helps with any future treatment should you get sick. Note the date and location of the bite. Many states offer tick-testing for Lyme Disease and Igenex Labs in California (http://igenex.com/Website/) will test ticks for Lyme Disease as well as other tick-borne diseases for a fee. Given how unreliable the patient testing is, knowing what diseases the attached tick carried can help the doctor decide which treatment is best.

11. Don’t track ticks in the house. Ticks can get into your house on shoes, pets or clothing worn outside. Keep your shoes by the door so they don’t track ticks into your house. Put clothing (or sleeping bags from camping) that might have ticks on it in the dryer for 30 minutes to kill any ticks. It is risky to sleep with any animal that spends time outside, even if the pet is treated with tick medicine. Ticks can hitch a ride in on the pet and fall off inside.

12. Tick-proof your yard. Get rid of brush and fallen leaves, move wood piles away from play areas, keep the grass cut and treat your yard with pesticides (natural or synthetic) to kill the ticks. The CDC has these and other recommendations you can follow: http://www.lymediseaseassociation.org/. Naturalawn of America offers a natural tick treatment that kills ticks that they recommend applying from March through October. There are also a number of natural tick repellents you can apply yourself that you can buy on-line or at your local garden center. A combination of these approaches along with the tick repellent can significantly reduce the risk of ticks. Daminex sells Tick Tubes, cardboard tubes filled with cotton balls soaked in Permethrin that kill ticks on mice without harming the mice. You can also make your own tick tubes using PVC, old carpet or other material and Permethrin. http://www.ticktubes.com/

 

I wrote it fora Lyme Awareness Talk I organized last month. It is everything I have found that you can do to protect yourself from reading up on Lyme over the past two years.

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Melinda, Hey!

 

How long did it take to get an appointment? We have got to do the Ambler Starbucks one night soon!!!!

 

"sometimes you want to go where everybody knows your name" I'm a regular at every starbucks in town! Just let me know when!

 

It only took 2-3 weeks for an appt. They actually had an earlier opening, but I was in denial about the Lyme diagnosis.

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OK...the way I'm reading these answers is that, virtually every child who has PANDAS seems to test positive for Lyme on the Igenex test. If that's the case, why spend $200 - $400 per child, and just assume that all our kids have it? Or...is it possible that something in our children that was triggered by the strep, actually shows up as positive on the Igenex test. Could these possibly be false positives, or again, do all our kids actually have underlying Lyme?

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I read on a lyme website that 80-90% of people get a rash with the lyme infection. Has anyone heard any reasoning as to why the other 10-20% don't get a rash? Or could it be on the scalp and go undetected? Is the rash always at the place on the skin where the bite occurred or can it be other places? The rash is an immune response, yes?

 

Also, referencing another post regarding Band 41, any microbe with a tail can trigger band 41? True, syphillis isn't likely, but if your child had EBV or Herpes Complex (cold sores) that can trip band 41? That could be the reason for many kiddos, I would think?

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The kids I know who have tested positive for Lyme eventually struggled post hdIVIG and then take off in their recovery when the RIGHT antibiotic protocol is used to address underlying infection. My friend's son's strep titers resolved after the first hdIVIG... the co-infections remained and he struggled with anxiety, panic attacks, OCD and rage behavior. He is now 6 weeks into Lyme treatment and 10 weeks post his 3 hdIVIG treatment and he is shedding the OCD. He has never made it this far post IVIG without regressing. This child could have easily been diagnosed with Asperger.

 

If it where me... even though my child appeared to be PANDAS I'd still be checking for Lyme/co-infection prior to any hdIVIG. There are some bands on the Igenex that is very Lyme specific so I do not believe it is the strep that triggers a false positive.

 

-Wendy

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tpotter - I don't think that ALL kids with PANDAS are going to test positive through IgeneX, but if you have ANY reason at all to believe it is a possibility... known tick bite, endemic area, spend a lot of time outdoors, etc... then I would recommend testing. As I stated in a previous post, I do believe that it is possible to have a false positive test, especially the IGM western blot. IgeneX IGM results actually state "Infection with HSV, EBV, HCV, and/or syphillis (RPR+) may give false (+) results." I also think it is possible to have a negative test, but still have Lyme. Everyone's immune system is different and will mount differing responses. Overall, the testing just isn't terribly reliable. That's why I think it takes a multitude of tests for various infections to help rule things in/out.

 

Jag10 - If you keep looking around on the internet, you will find statistics all over the board (from 30% - 90%) regarding the bulls-eye rash. The truth is probably somewhere in the middle, but I also think that atypical rashes (red, but not a bulls-eye) are under appreciated in medical literature, and LLMD's will tell you this also. About band 41... yes, that's basically it... any microbe with flagella (tail) can cause a reaction at band 41 such as E coli, salmonella, and others. That's why so many people have a positive reaction at this band. It is not specific for Lyme. As stated above, Epstein Barr (EBV), Herpes Simplex (HSV), and other viruses can cross-react at band 31 (and possibly others) of the western blot and make the band appear indeterminate or positive.

Edited by JT's Mom
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WHAT ARE THE SYMPTOMS?

 

A characteristic red bulls-eye rash (EM) at the site of the bite is present in less than 40% of patients. The rash may appear within days to weeks after the bite, but could be hidden in hairline or underarms.

 

http://www.ilads.org..._articles6.html

 

Sorry!

 

What I saw was on the American Lyme Disease Foundation website.

 

JT Mom was right about a lot of swing in that statistic!!!! Reminds me of the strep titers controversy, ugh!

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Let me just say...... If you thought PANDAS was overwhelming try reading up on LYME (there are A LOT of facts, figures, bands, co-infections etc to learn about). I gave up and I'm finally going to put my trust (I hope) in one of the more noted Lyme Dr.'s for help.

 

I'm actually burned out on my own relentless posting :wacko:

 

-Wendy

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Do we have a listing of LLMD's somewhere? I know there has been a huge amount of talk about this, and I would like to find someone at least fairly near our neck of the woods (Philly, DC, NY, CT.) Is Dr. B. a LLMD?

 

Dr. Jones is in Connecticut. We are seeing an Intergrative doctor who treats Lyme in Wayne, PA. He was recommended by our Local Lyme Chapter (illads).

Melinda

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OK...the way I'm reading these answers is that, virtually every child who has PANDAS seems to test positive for Lyme on the Igenex test. If that's the case, why spend $200 - $400 per child, and just assume that all our kids have it? Or...is it possible that something in our children that was triggered by the strep, actually shows up as positive on the Igenex test. Could these possibly be false positives, or again, do all our kids actually have underlying Lyme?

There are very few false positives on the igenex tests.

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I read on a lyme website that 80-90% of people get a rash with the lyme infection. Has anyone heard any reasoning as to why the other 10-20% don't get a rash? Or could it be on the scalp and go undetected? Is the rash always at the place on the skin where the bite occurred or can it be other places? The rash is an immune response, yes?

 

Also, referencing another post regarding Band 41, any microbe with a tail can trigger band 41? True, syphillis isn't likely, but if your child had EBV or Herpes Complex (cold sores) that can trip band 41? That could be the reason for many kiddos, I would think?

Forget the rash. Knowledgeable lyme specialists estimate that a very small portion of lyme patients ever see a rash. I know very few lyme patients who got the rash. Also you could get the rash and not see it and on a black person it might not show up at all (according to dr. kenneth singleton's The Lyme Disease Solution). The reason some doctors think the bulls eye is so important is because many studies required that a patient have a bullseye rash in order to participate in the study and this lead many to believe that a bullseye is critical. It was an arbitrary decision by the organizers of the lyme studies. Also the early doctors treating lyme were dermatologists and rheumatologists who viewed lyme from their own specialty. Lyme is a multi-system illness that can affect any part of the body and you don't need to get joint pain or a rash to have lyme. Band 41 tests for the presence for a spirochetal infection (ie lyme, syphilis and there is some other spirochetal infection not EBV or Herpes).

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WHAT ARE THE SYMPTOMS?

 

A characteristic red bulls-eye rash (EM) at the site of the bite is present in less than 40% of patients. The rash may appear within days to weeks after the bite, but could be hidden in hairline or underarms.

 

http://www.ilads.org..._articles6.html

 

Sorry!

 

What I saw was on the American Lyme Disease Foundation website.

 

JT Mom was right about a lot of swing in that statistic!!!! Reminds me of the strep titers controversy, ugh!

 

Read Cure Unknown and it will blow your mind. You will understand it all after reading that book.

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