Igenex Test Results Back!

[Lakes]

Good morning Roadback Friends!!

I got my results back from Igenex last night and would love your help! Both IGG and IGM were considered “negative” – not enough “bands present” – but I know there's much more to the story (especially taking my symptoms into account). So I am coming to my RB experts again, and would greatly appreciate your advice.  

Here are the results:

IGM Results: 18, 22, 23-25, 28, 30, 39, 45, 58, 73, 83-93 ALL NEGATIVE

                     31, 34 and 41 IND

                     66 Positive +

IGG Results: 18, 22, 23-25, 28, 30, 34, 39, 45, 66, 73, 83-93 NEGATIVE

                     31 IND

                     41 and 58 both Positive ++

As always, thanks so much for your help!!!!

 

 

 

[Maz]

Hi Lakes,

Not sure if you've been following JB's recent Lyme thread, but your band pattern is pretty similar to hers with same bands showing sensitivity on IgG:

http://rbfbb.org/view_topic.php?id=3451&forum_id=1&page=2

It's worth going through this whole discussion thread, because pretty much everything discussed will also apply in your case. JB has also done some legwork by contacting Prof Nicholson and the owner of IGeneX, Dr Harris, for their insights on her WB tests and included their feedback to her in the above thread….Prof Nicholson telling her that he would take her test as a positive and Dr. H suggesting that she get further etiope testing done on Band 31.

Re: IND (indeterminate) band readings, here is what Dr. C (Kim's LLMD in MO) has to say in the link below:

“Many would say the ” +/-” equivocal [“IND”] bands are not significant. The problem I have with that, is that there are “-” negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put “+/-” at some bands.

The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the “+/-” equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.”

Also, these links will tell you pretty much all any of us here can tell you about these bands and what they mean. The first link is written by Dr C, an LLMD in MO:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=042077;p=0

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

Lakes, hope this helps in your searches!

Peace, Maz

[Lakes]

Hi Maz!

Thanks SO much for your response! Those links were great, especially the one that explained each band. Now begins my search for a good LLMD. I received the list a few months ago, so I will only need another one if there are updates. And do you know of any with SD knowledge also? I don't mind traveling/flying to get that extra experience. 

It will feel so great to finally consult with a SD and/or Lyme expert for a change! So far I've been making every decision regarding my treatment. Although having my doctor's cooperation has been nice, it feels like I've just been using her office to treat myself and educate her staff on SD.  (I haven't been overly thrilled with her lately – I'll give you those details in a PM so you can have the information when/if you decide to give her name out). 

Thanks so much for your guidance!!! Thanks to you and your wonderful team of volunteers, I was able to treat the SD right away with no time wasted. And now you're helping me with the whole Lyme situation – I couldn't do it without you!! 

 

[Maz]

[user=1613]Lakes[/user] wrote:

Now begins my search for a good LLMD. I received the list a few months ago, so I will only need another one if there are updates. And do you know of any with SD knowledge also? I don't mind traveling/flying to get that extra experience. 

So far I've been making every decision regarding my treatment. Although having my doctor's cooperation has been nice, it feels like I've just been using her office to treat myself and educate her staff on SD.  (I haven't been overly thrilled with her lately – I'll give you those details in a PM so you can have the information when/if you decide to give her name out). 

Hi Lakes,

I don't know of any LLMDs specifically with scleroderma experience, because the way LLMDs look at the Lyme complex of symptoms is a bit like a Dr. Brown lumper would. Essentially, they are looking for infections to treat and, when they have the antibiotic mix right, the symptoms remit and resolve. Scleroderma, per say, is pretty rare and even most rheumies probably don't get more than a case or two during their entire career. So what is great about your current rheumy is that she is willing to look outside the box and support you through your treatment choice…this is a rare gift….and you may need her for adjunctive meds as you go through Lyme treatments to support you on the way that a LLMD may not be conversant in. It's not unusual to build a team in these sorts of scenarios and, if you do find yourself traveling to a good LLMD, then she may even be open to consulting with them to save you traveling too often. This would be pretty ideal. 🙂

As far as I know, Kim's LLMD, Dr. Crist in MO has seen her case of scleroderma and got her well and is now seeing Elaine's son (MCTD). So this guy has some knowledge of scleroderma…how much, I don't know, but Kim can probably fill you in. LLMDs realize that “AI” diseases go with Lyme & co, so most will likely have seen some permutation of an AI disease in their practice. My LLMD, for instance, has a special interest in MS and Lyme, but his belief is that a good proportion of all AI diseases have some connection to Lyme and spoken at conferences on this connection to MS, FM, CFIDs, Lupus and RA. Put it this way, I don't think any good LLMD will be suprised to see a sclero patient on their doorstep with Lyme.

I'll look fwd to hearing details of your rheumy in your PM when you get to it. I think I may have added her to the AP doc list already, but will re-check when I hear from you and add any notes you suggest.

Thanks!

Peace, Maz

[Kim]

Hey Lakes,

Sounds like you're zeroing in on a more definitive diagnosis.  Sorry, though, to have a new member of the SD/Lyme club. 🙁

When I first got sick I didn't know Lyme was part of my problem so I was just treating SD and RA, with pulsed doses of Minocin, then added Clindy IVs and Zith.  With each new antibiotic I saw more improvements, but hit a plateau and ultimately tested for Lyme.  With my positive Lyme test in hand I went to see Dr. C. in Missouri and he assured me that in treating the Lyme that we were also treating the SD.  He was right because today I'm in remission.  When I asked him if he had any other patients with the Lyme/SD combo, he said at that time he had about 5 others. 

It seems to me that the expert antibiotic docs, whether it be Dr. S. in Iowa or Dr. C. in Missouri, are not really hung up on labels for our diseases.  They have a huge success rate and with so many antibiotics at their disposal something is bound to work.

Wishing you all the best in your treatment.

Take care…..kim 

[Parisa]

My husband's LLMD didn't have experience with a DM patient (actually he was probably a mixed connective tissue patient then) but just went after the Lyme and co-infections.  He did want my husband to have a rheumatologist on board though.  I balked at that in the beginning as I was a little sour on rheumies at that time.  However,  a year into Lyme treatment my husband's EMG came back positive for myositis and we decided to pursue IVIG which we wouldn't have been able to do without the rheumie.

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