Igenex lyme test while on herbal supps

[GraceUnderPressure]

My ds18 is doing very badly these last few days. We are going to Dallas to see his dr on Thursday. Originally I had planned to get the Igenex lyme test done when we get there, but we started on the herb lomatium dissectum yesterday because ds's issues seem to be viral & we need to do something for him ASAP!!!

 

My understanding is that lomatium, besides being anti-viral, also has anti-bacterial & anti-fungal properties but that they have not been explored by re$earchers yet. So I'm thinking we should probably not risk wasting money on the lyme test since we won't know if the lomatium affects the results or not.

 

Because my ds is doing so poorly, I intend to try for a referral for PEX, but this dr only does IVIG so I'm pretty sure the dr will want to try that instead (though I'm worried sick that ds doesn't have any room for the possibility of getting worse to get better). Doesn't getting IVIG interfere with lyme test results? So if we end up going the IVIG route (we are desperate at this point), would it make sense to wait & see how well it helps & only do the Igenex lyme if things don't improve? Any & all opinions, please?

[lss]

My ds18 is doing very badly these last few days. We are going to Dallas to see his dr on Thursday. Originally I had planned to get the Igenex lyme test done when we get there, but we started on the herb lomatium dissectum yesterday because ds's issues seem to be viral & we need to do something for him ASAP!!!

 

My understanding is that lomatium, besides being anti-viral, also has anti-bacterial & anti-fungal properties but that they have not been explored by re$earchers yet. So I'm thinking we should probably not risk wasting money on the lyme test since we won't know if the lomatium affects the results or not.

 

Because my ds is doing so poorly, I intend to try for a referral for PEX, but this dr only does IVIG so I'm pretty sure the dr will want to try that instead (though I'm worried sick that ds doesn't have any room for the possibility of getting worse to get better). Doesn't getting IVIG interfere with lyme test results? So if we end up going the IVIG route (we are desperate at this point), would it make sense to wait & see how well it helps & only do the Igenex lyme if things don't improve? Any & all opinions, please?

 

 

Grace,

 

I assume you will be seing Dr. R, so I would ask him to run the Western Blot or the CD57, and I'm sure you already know that he can also run the Ignex testing as he already has the test in his office. Have you tried seing Dr. Enfante in San Antonio?

Dr. R and I have discussed PEX in the DFW area, and he is not aware of anyone that would do it for Pandas kids. He is aware of the drs at Georgetown however. Just my suggestion.

 

Linda

[Fixit]

My ds18 is doing very badly these last few days. We are going to Dallas to see his dr on Thursday. Originally I had planned to get the Igenex lyme test done when we get there, but we started on the herb lomatium dissectum yesterday because ds's issues seem to be viral & we need to do something for him ASAP!!!

 

My understanding is that lomatium, besides being anti-viral, also has anti-bacterial & anti-fungal properties but that they have not been explored by re$earchers yet. So I'm thinking we should probably not risk wasting money on the lyme test since we won't know if the lomatium affects the results or not.

 

Because my ds is doing so poorly, I intend to try for a referral for PEX, but this dr only does IVIG so I'm pretty sure the dr will want to try that instead (though I'm worried sick that ds doesn't have any room for the possibility of getting worse to get better). Doesn't getting IVIG interfere with lyme test results? So if we end up going the IVIG route (we are desperate at this point), would it make sense to wait & see how well it helps & only do the Igenex lyme if things don't improve? Any & all opinions, please?

 

I am so sorry you are going through this...

i am new to the lymes thing...

But i would do the tests now..and maybe do dot blot..unles your doc says that interferes with test...JMHO...

on the dot blot ..its a urine sample...and...my doc would NOT challenge it...i took it upon myself to find herbs that are recommended...some are listed when the kit comes in.....that alone with 250mg zith gave me 2 positives on the test....

Also order them NOW..it's either igenex or the other staff...but things seem to get delayed for a lot of reasons...

[sf_mom]

I agree with Fixit and at possibly pursuing Dot Blot and WB test prior to more aggressive treatments. The hdIVIG have not been helpful for everyone with Lyme so if you can hold off another 3/4 weeks you might have a better sense of direction for treatment.

 

One thing that might be temporarily beneficial to your son is nightly benadryl. Histamine levels are often way up on children that have multiple co-infections and it can help with symptoms. It takes about two weeks to determine its effectiveness.

 

Prayers you'll find answers soon.

 

-Wendy

[MichaelTampa]

I have taken lomatium dissectum, and many other herbs, and I just have trouble believing they would have much of an affect on a lyme test. It's not going to completely obliterate the lyme to the point that the body would not be making antibodies, which is what is measured on the western blot test, and I believe ELISA too. The CD57 is different, it measures natural killer cells that particularly help fight lyme. While herbs may strengthen the body a little throughout the fight, and perhaps affect the results slightly, I would be surprised if it could totally mess up the results.

 

IVIG would certainly mess up the results, as it is introducing the blood of at least 1,000 people into the body. So the test will be measuring some combination of everybody. Eventually, most may wear off, over perhaps 1-3 months time. People have posted what their doctor has said regarding how long it will take, that's kind of my memory of the range, as not all doctors said the same thing.

[GraceUnderPressure]

Thanks everyone!

 

Michael, I saw your earlier post of several months ago about lomatium - did you have good results with it? So far we have tried ashwagandha, astralagus, elderberry, monolaurin & andrographis. As near as I can tell, the monolaurin & the andrographis seem to be having beneficial effects. After I ran out of them, ds seemed okay for a day or so & then he & we all started to feel like we were getting sick again.

 

The herbalist who recommends lomatium said that it was best given with other supportive herbs like ashwagandha & astragalus so I went ahead & got some more of everything & we're going to try them all as of today!

 

~Grace

[GraceUnderPressure]

Grace,

 

I assume you will be seing Dr. R, so I would ask him to run the Western Blot or the CD57, and I'm sure you already know that he can also run the Ignex testing as he already has the test in his office. Have you tried seing Dr. Enfante in San Antonio?

Dr. R and I have discussed PEX in the DFW area, and he is not aware of anyone that would do it for Pandas kids. He is aware of the drs at Georgetown however. Just my suggestion.

 

Linda

Linda,

 

I talked to Dr. Infante by email back in Oct, & he was very nice, but he is new to this & only seems to "get" straight-forward obvious strep PANDAS not anything more complicated. My ds seems to be a PITAND. If he has strep it is hidden. He doesn't have any of the typical lyme symptoms either & all of the other Igenex tests were negative (we got a panel done, but somehow lyme got left off of it), so I'm doubtful but we're just trying to cover all the possibilities we can.

 

By Georgetown, do you mean in DC? We are near Houston, TX & that long a distance is just not tenable right now. There's a plasmapheresis unit at Methodist Hospital here at the Houston Medical Center, but I don't know how difficult it would be to get them to agree to treatment. I would've thought all they needed was a dr willing to prescribe it & an insurance co willing to pay?

 

~Grace

[lss]

Grace,

 

I assume you will be seing Dr. R, so I would ask him to run the Western Blot or the CD57, and I'm sure you already know that he can also run the Ignex testing as he already has the test in his office. Have you tried seing Dr. Enfante in San Antonio?

Dr. R and I have discussed PEX in the DFW area, and he is not aware of anyone that would do it for Pandas kids. He is aware of the drs at Georgetown however. Just my suggestion.

 

Linda

Linda,

 

I talked to Dr. Infante by email back in Oct, & he was very nice, but he is new to this & only seems to "get" straight-forward obvious strep PANDAS not anything more complicated. My ds seems to be a PITAND. If he has strep it is hidden. He doesn't have any of the typical lyme symptoms either & all of the other Igenex tests were negative (we got a panel done, but somehow lyme got left off of it), so I'm doubtful but we're just trying to cover all the possibilities we can.

 

By Georgetown, do you mean in DC? We are near Houston, TX & that long a distance is just not tenable right now. There's a plasmapheresis unit at Methodist Hospital here at the Houston Medical Center, but I don't know how difficult it would be to get them to agree to treatment. I would've thought all they needed was a dr willing to prescribe it & an insurance co willing to pay?

 

~Grace

 

 

Grace,

 

I've sent you a pm.

 

Linda