Finally got DDs' Igenex results

[kferricks]

Our Pandas Doc referred her to an LLMD. His exact words were "I want her to go to this person because not all Lyme doctors know what they are doing." LOL He was referring to the difference between a Lyme doc and an LLMD. I really appreciate him because he is such a straight up guy with us. He was big enough to say that he does not know enough the complexities of treating lyme, but he would like to see us after our first appointment

 

oK here is the results and if anyone can direct me to Busters post about what they all mean, I would really appreciate it.

IGM

 

18 kda ++

23-25 kda -

28 kda -

30 kda +

31 kda -

34 kda -

39 kda IND

41 kda +

45 kda -

58 kda +

66 kda -

83-93 kda +

 

IgG

18 kda -

23-25 kda -

28 kda -

30 kda +

31 kda -

34 kda -

39 kda +

41 kda +++

45 kda -

58 kda -

66 kda -

83-93 kda -

[MichaelTampa]

Band 39 is the most specific for lyme. The IND and positive for that, along with the significant variety of other key bands, along with lyme symptoms (don't remember symptoms in your case, but if you have a PANDAS doc then there are lyme-like symptoms), means almost certainly lyme is involved and a significant part of the problem for your daughter. Time for treatment.

[kferricks]

Thank you Michael. I have been trying to get through to the Lyme doc. Phone is glued to me since yesterday. For the last couple weeks I have been trying to get her into epsom baths and trying to sneak culterell into her drinks. Just things I've read off of here. I know they are not enough. Also, the Pdoc has her on Biaxin or Erch until we get into the lyme doc.

 

Any other suggestions from anyone?

[DesperateInSeattle]

Where are you located? We are using an ILADS doc in the NW. Apparently I can not post the Dr.'s name. The only thing with him is he charges $400/hr. with payment due at the time of visit. Our first visit was $800 and I got our insurance to cover some of his costs now. But his office won't bill insurance for you and he doesn't participate in any ins. plans. So, you'll have to work with your ins. co. for pre-approval of out of network provider. Also, he uses IGenex Labs which also does not bill ins. and all of the supplements he recommends will be an out of pocket cost.

Edited May 5, 2011 by DesperateInSeattle

[kferricks]

I'm in SW Pennsylvania, close to Pittsburgh. I will be traveling to CT. I understand about having to pay cash and am ready for it, I think..

[LNN]

We are using an ILADS doc in ____. His name is Dr. G. The only thing with him is he charges $400/hr. with payment due at the time of visit. Our first visit was $800 and I got our insurance to cover some of his costs now. But his office won't bill insurance for you and he doesn't participate in any ins. plans. So, you'll have to work with your ins. co. for pre-approval of out of network provider. Also, he uses IGenex Labs which also does not bill ins. and all of the supplements he recommends will be an out of pocket cost.

 

Desperate-

Because some lyme diagnoses and treatments are controversial, it's in everyone's best interest to not use a doctor's name or location in a public post. Most lyme forums ask that you only refer to Dr G. and if someone wants to know a full name or location, they can PM you. So if you wouldn't mind, can you please go back and edit your post to remove the full name and location? Thanks...

 

Also, for what it's worth, your doctor's billing arrangement is quite common among LLMDs. They often spend much longer with a patient than insurance companies deem necessary, so the insurance companies would only reimburse the Usual and Customary Rate for a half hour visit when the doctor actually spent 45 min - 2 hrs with you. So the docs ask you to pay out of pocket and give you a claim form to submit for whatever reimbursement your insurance co. will provide. It takes them out of the loop and keeps them from being "short changed" for their time. Same with Igenex.

 

If you have an HSA, you can have money deducted pre-tax and then use those funds to pay for doc visits and supplements prescribed by your doctor (as of 2011, I don't believe you can use HSA funds to buy OTC supplements, but ones ordered by your doctor are ok).

[mama2alex]

Here are the Lyme bands explained, just fyi:

 

Western Blot Bands description:

 

9 cross-reactive for Borrellia

12 specific for Bb

18 unknown

20 cross-reactive for Borrellia

21 unknown

22 specific for Bb, probably really the 23/25 band

23-25 outer surface protein C (OspC), specific for Bb

28 unknown

30 unknown; probably an outer surface protein; common in European and

one California strain

31 outer surface protein A (OspA), specific for Bb

34 outer surface protein B (OspB); specific for Bb

35 specific for Bb

37 specific for Bb

38 cross-reactive for Bb

39 is a major protein of Bb flagellin; specific for Bb

41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia

45 cross-reactive for all Borellia (sometimes people with Lyme who have

this band positive also have the co-infection Ehrlichiosis)

50 cross-reactive for all Borrellia

55 cross-reactive for all Borrellia

57 cross-reactive for all Borrellia

58 unknown but may be a heat-shock Bb protein

60 cross reactive for all Borrellia

66 cross-reactive for all Borrelia, common in all bacteria

83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane

93 unknown, probably the same protein in band 83, just migrates differently in some patients

 

 

 

Our Pandas Doc referred her to an LLMD. His exact words were "I want her to go to this person because not all Lyme doctors know what they are doing." LOL He was referring to the difference between a Lyme doc and an LLMD. I really appreciate him because he is such a straight up guy with us. He was big enough to say that he does not know enough the complexities of treating lyme, but he would like to see us after our first appointment

 

oK here is the results and if anyone can direct me to Busters post about what they all mean, I would really appreciate it.

IGM

 

18 kda ++

23-25 kda -

28 kda -

30 kda +

31 kda -

34 kda -

39 kda IND

41 kda +

45 kda -

58 kda +

66 kda -

83-93 kda +

 

IgG

18 kda -

23-25 kda -

28 kda -

30 kda +

31 kda -

34 kda -

39 kda +

41 kda +++

45 kda -

58 kda -

66 kda -

83-93 kda -