LymeNet Flash: Leaving forDr. appt. with the Infectious Disease guy.

This is topic Leaving forDr. appt. with the Infectious Disease guy. in forum Medical Questions at LymeNet Flash.

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Posted by Karol (Member # 15831) on :

Hey ya'll,

I am getting ready to leave to go to the ID doctor that my Neuro referred me to go see.

I will let you all know what he says upon my return.

Supposedly he is Lyme Literate, we will see.

Posted by Keebler (Member # 12673) on :

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Karol,

hope it goes well.

"Supposedly" is a big word. Hope your sources were correct.

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Posted by Karol (Member # 15831) on :

Well I am back from the doctor.

He wants more blood tests. I should say only one test.

The script reads

Borrelia Burgdofi/ DNA PCR.....(lyme disease)

He thinks because I am only IgM positive and not IgG positive that this is probably not Lyme.

So I told him that my pcp and the Rheumatologist and my Neurologist are all wrong???

I will have the blood test done but will not be going back to this guy for sure. I will have the lab that draws the blood send the results to my family doctor so I can get my hands on the results quicker.

In the meantime I keep looking for a LLMD.

I feel like a ping pong ball and the doctors are holding the paddles and having a blast hitting me back and forth.

My time is as valuable as theirs!!! [loco]

Posted by Keebler (Member # 12673) on :

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You don't need another test.

Many patients with advanced/chronic lyme show the IgM . . . there is research supporting that.

You have to consider which lab will do this other test.

You have do PCR's just right. On or off a particular abx a certain amount of time. If the PCR is not done just right, it will not be accurate but your entire future will be determined by it.

Find out much more before you go ahead with this test.

And . . . I assume you cannot find or afford or get to a LLMD ?

I gotta say that since this new doctor is not familiar with the IgM tendency in advanced lyme that he is not expert enough regarding treatment. I would not return to that doctor.

Besides - testing is not supposed to be for diagnostic purposes - your symptoms are - your history - AND the positive test you ALREADY have.

Again, if you do the PCR, be certain you prep for it precisely and that it is done EXACTLY as it should be, HANDLED and SHIPPED EXACTLY as it should be and performed by qualified lab technicians.

The test must go back to the ordering doctor, however, you may be able to have a copy sent to other doctors. Sometimes, not, though.

www.igenex.com IGENEX for more on PCR testing.

Also, know that only one strain of lyme is tested for in the U.S. - and there are over 300 strains world-wide. If you have traveled and possibly been exposed elsewhere, you should research the strains in those other places and have tests/evaluation for other strains in addition to the Bb from your previous IgM.

I also think we have many more strains in the U.S. than just one (even if you consider STARI and Masters'.)

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And, even if you get a positive PCR, what would this doctor's treatment plan be? If just a week or two, it's not worth it.

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And, what about evaluation for co-infections? Has that been done, too (I hope)?

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Did you inquire as to if this doctor is familiar with ILADS' research? Is he in agreement with the ILADS' treatment plan.

If he is not, you will get the standard IDSA treatment. It's that simple.

I apologize for taking the offensive position here. So many of us just got the run-a-round from doctors that I truly hope you can easily get moving on getting better. Don't waste your time with anyone less than the best.

Best of luck as you figure out what path to take.

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Posted by tdtid (Member # 10276) on :

Oh Karol,

I too wanted to believe all the various specialists I was sent to for five years before my diagnosis and had no clue of what was really going on.

Save yourself a lot of pain, suffering and money and go straight to a REAL LLMD. If you need recommendations of doctors in your area, please put a note over in the seeking a doctor section with your location.

Cathy

Posted by Karol (Member # 15831) on :

Thanks Keebler and tdtid.

The test I am having done is going to be sent to Igenex according to this ding wit.

I am having the results go to my family care physician because i will get the results much quicker then to wait until August 13th for a follow up with todays guy. I am NOT GOING BACK TO HIM.

Affording a LLMD is a real problem for me. I do not work and am on permanent disability. My tiny little monthly check just will not allow me to pay out of pocket.

I have been calling numerous LLMD's and wont give up until i find one who will take my insurance, I hope.

I am really frustrated and just want help!

Posted by Karol (Member # 15831) on :

I forgot to tell you that I am not taking any antibiotics and have not been.

I started Doxy on June 4th and stopped it June 8th.

I have not taken anything since then.

Posted by hcconn22 (Member # 5263) on :

Your Dr may have been a ding-wit but at least he knew of Igenex and ordered a PCR DNA test.

This is as good of a test you can get for Lyme, but we all know that at best they can be inaccurate for many reasons.

Also the CD67 test from Labcorp is good for helping to detect suppressed immune functions with active Lyme disease. Your family Dr can order this test.

Read an earlier post on CD57 test. Again not perfect but another possible indicator of positive active infection is a low CD57 count.

Posted by Keebler (Member # 12673) on :

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Please find out if the abx will affect the test.

you can contact Igenex. And be certain everyone at the lab follows instructions to the letter - the day shipped, how it's handled, stored, etc.

Good luck.

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Posted by Karol (Member # 15831) on :

I will ask Igenex the abx and its effects on this test today when I go get the blood drawn.

It the lab thinks it will effect the test then I will wait to have it done.

Thanks for helpful info. Your all great here! [group hug]

Posted by Keebler (Member # 12673) on :

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If you call Igenex before you go, it may save you a trip.

Also - this is the beginning of a 3 day weekend. Where will this test be sitting for the next three days ?

Usually, Igenex says to ship specimens out early in the week.

.

Posted by tdtid (Member # 10276) on :

If the blood work is definitely going to Igenex, then yes, atleast this doctor may be on the right track.

As far as finding a doctor that takes insurance, sadly, there are some, but not all of them. I'm not sure where the "Arm pit of the world" is located, but perhaps if people knew your general location, they could help advise you.

Cathy

Posted by Karol (Member # 15831) on :

Keebler,

Igenex suggested waiting until Monday to get the blood drawn and so I will do that. Thanks.

Cathy,

The "Arm Pit of the World" is New Jersey and I have received a lot of names of LLMD's here yet so far the ones I have called do not take insurance.

I do not understand why they do not take insurance? Any other doctor I have ever gone to in my entire lifetime has ALWAYS TAKEN INSURANCE.

It just does not make sense to me. [confused]