Lyme Testing

[mtgas]

Hi Everyone,

I've been debating whether I should get tested for Lyme through Igenex. Some people I have spoken with say there is no way I can have Lyme and any of the co-infections since I have lived in South Florida my whole life. However, I remember removing a tick off my body once when visiting friends in GA (not sure if I was bit or not) but I did get awfully sick a few days later with flu-like symptoms, high fever, etc, for which I received antibiotics. Fast forward about 15 years later and I'm diagnosed with RA.

I did have a Western Blot test done in 2007 when I first became symptomatic since I always thought my RA must have some infectious cause (this was before I knew about AP). The test was done through LabCorp though and only one band, P41 came up as “Present”.

I do not have an LLMD and am being treated by Dr. S in Ida Grove. I have improved about 85% on Minocin but feel like I am plateauing. A few small joints seem to be getting worse. :doh:

Any advice would be greatly appreciated!

Michelle

[Maz]

[user=152]mtgas[/user] wrote:

Some people I have spoken with say there is no way I can have Lyme and any of the co-infections since I have lived in South Florida my whole life. However, I remember removing a tick off my body once when visiting friends in GA (not sure if I was bit or not) but I did get awfully sick a few days later with flu-like symptoms, high fever, etc, for which I received antibiotics. Fast forward about 15 years later and I'm diagnosed with RA.

I did have a Western Blot test done in 2007 when I first became symptomatic since I always thought my RA must have some infectious cause (this was before I knew about AP). The test was done through LabCorp though and only one band, P41 came up as “Present”.

I do not have an LLMD and am being treated by Dr. S in Ida Grove. I have improved about 85% on Minocin but feel like I am plateauing. A few small joints seem to be getting worse. :doh:

Hi Michelle,

When folk find they plateau after doing well and late into treatment, then it's always wise to start checking into possible infectious co-offenders that may have been overlooked and need separate treatment.

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/89.html

Standard tests for Lyme are notoriously inaccurate, so a negative LabCorp or Quest test is pretty worthless…they miss 50% of cases of Lyme and don't include some of the very significant bands that IGeneX does include that are so specific to Lyme that they can't be attributed to any other infection. You can read more about this here:

http://www.lymenet.de/labtests/brenner.htm

The chronic Lyme controversy runs deep with one side believing that a short course of antibiotics does the trick and eradicates the disease, but there is a plethora of research now that contradicts this. Here is just one example:

http://www.columbia-lyme.org/research/keyarticles.html

The fact that you had a known past tick bite, suffered from classic early stage Lyme symptoms and now suffer from RA is enough evidence to warrant further investigation for possible untreated coinfections. You're wise to check into this!

Peace, Maz

[mtgas]

Thanks Maz for the great links and for the advice!

I have seen a few posts by Kim mentioning that her LLMD recommends going with test 188 or 189 but I have seen a lot of people requesting further testing on Band 31, if I am not mistaken. 

Can anyone with recent Igenex testing experience recommend which panels I should order? Since a physician's signature is required for the tests, I would rather just get them all ordered at the same time.

Thanks again!

 

 

[Maz]

[user=152]mtgas[/user] wrote:

I have seen a few posts by Kim mentioning that her LLMD recommends going with test 188 or 189 but I have seen a lot of people requesting further testing on Band 31, if I am not mistaken. 

Can anyone with recent Igenex testing experience recommend which panels I should order? Since a physician's signature is required for the tests, I would rather just get them all ordered at the same time.

Hi Michelle,

Others may be able to share their experiences with you, but here's what I would do:

No need to worry about the extra testing on Band 31 just yet. That is something that is done if the band comes back in from the first round of testing as “indeterminate.” Band 31 (Osp A) is so specific to Lyme that it can be from no other infection, so any sensitivity on this band, even indeterminate, warrants further specialized testing if that is the case, especially if Lyme is strongly suspected and the overall test result is questionable. Important to remember that Lyme is very immunosuppressive, so some people just don't produce enough antibody to test…sometimes for years…and some bands show up early and others don't show up until well into chronic stages. 

These tests are very expensive and, unless your carrier will allow you to claim the costs of the tests back, then it's out-of-pocket. This is why people normally get just the basic Western Blot IgM and IgG (test #188 and 189) done first. A positive test or sensitivity on the more significant bands is enough for a LLMD to suspect Lyme and treat accordingly.

If you want further testing done for tickborne coinfections, the best thing to do is call IGeneX to ask for their advice on what tests are indicated for your region (SE USA). Different regions of the US have a greater or lesser prevalence of certain coinfections. This also holds true for various strains of borreliosis, so they can tell you which tests would be appropo for a tickbite in GA and/or Florida.

The IGeneX contact info is right on their website: http://www.IGeneX.com

Just for general information to anyone reading this:

A good rule of thumb…if you ever get bitten by a tick, after carefully removing it (gently lifting straight up with a pair of tweezers without squeezing the tick and cleaning bite wound with rubbing alcohol), keep it in a baggie with a wet cotton wool puff and send the tick for testing to IGeneX. It's cheaper and will tell you what organisms were likely passed, if any. 😉 Tick-testing also doesn't require a physician's script!

Peace, Maz

 

[Donna RA]

I'd get the testing done.  I was feeling the same as you, and after 3 yrs on AP, I decided I needed to have the testing done.  I do have Lyme, and switched up my protocol, and noticed the difference within a few days.  Herx, was not unbearable, but very noticeable on the 3rd day.

Good Luck with your decision,

Donna RA and Lyme

[mtgas]

Thanks again Maz! You always offer such valuable information.  It is very much appreciated.

Donna, thank you as well for your input!

I am going to call Igenex now and order the kits. 🙂  

[Kim]

[user=152]mtgas[/user] wrote:

Thanks again Maz! You always offer such valuable information.  It is very much appreciated.

Donna, thank you as well for your input!

I am going to call Igenex now and order the kits. 🙂  

Michelle,

You don't have to select which tests to order at the time you request the test kit.  They send you the kit and forms (no charge at this point).  Once you get the kit and when you are filling out the forms, prior to the blood draw (2 vials), you then check off and pay for the tests you are requesting.

Smart move, BTW. 😉

Take care……kim

p.s. Don't fall for the “we don't have Lyme here” line.  The doctor that signed my Igenex form told me, “we don't have Lyme in Indiana”, and I said, “please just humor me and sign the form,” which he did and the rest is history.  Lyme is EVERYWHERE!!!

[mtgas]

That is really good to know. Thanks Kim!

I was thinking about asking Dr. S if he could sign off on the form but since he is semi-retired and travels, etc., I think my best bet is to ask my PCP to sign it.

If my PCP gives me that line about not having Lyme in Florida, I'm going to say the same thing you did to your doctor!! 😀 

[Maz]

[user=152]mtgas[/user] wrote:

I am going to call Igenex now and order the kits. 🙂  

Michelle, please let us know how it goes for you and all the best with it all!

Peace, Maz

[mtgas]

[user=27]Maz[/user] wrote:

[user=152]mtgas[/user] wrote:

I am going to call Igenex now and order the kits. 🙂  

Michelle, please let us know how it goes for you and all the best with it all!

Peace, Maz

I will!

Thank you!!

[luvmywonderfulkids]

Michele,

 

There is also a Dr. that works for the Board of Health in Jacksonville, FL that is running DNA tests — if you pm me, I will send you his information. There is Lyme in FL and as he said, if these ID docs would get out in the real world they would know there is.

 

Sue — Ryan's Mom

[mtgas]

[user=1274]luvmywonderfulkids[/user] wrote:

Michele,

 

There is also a Dr. that works for the Board of Health in Jacksonville, FL that is running DNA tests — if you pm me, I will send you his information. There is Lyme in FL and as he said, if these ID docs would get out in the real world they would know there is.

 

Sue — Ryan's Mom

Hi Sue,

Sent you a PM.  Thanks for this info!

Michelle

[Author]

Posts