Just got Lyme Test (IgeneX) Results

[mtgas]

Hi Everyone,

Just got my test results back from my doctor.  He called to tell me I am negative for Lyme but am a bit confused with the results (I asked him to fax me a copy)…Below are the results. Based on your experience, would you go ahead and see an LLMD? I did not stop taking antibiotics prior to testing since I found out about the wash out period after the fact :doh: Not sure if that affected my results any…

IGM:

31 IND

39 IND

41 +

66 +

IGG:

31 IND

39 IND

41 ++

Thanks,

Michelle

[Trudi]

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

Based on your experience, would you go ahead and see an LLMD?

Yes!

 

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

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

He called to tell me I am negative for Lyme but am a bit confused with the results (I asked him to fax me a copy)…Below are the results. Based on your experience, would you go ahead and see an LLMD? I did not stop taking antibiotics prior to 

Hi Michelle,

Good job getting a copy of those IGeneX labs!

You're showing sensitivity on some pretty Lyme-specific bands on both IgM and IgG. If you read Dr. C's (Kim's LLMD in MO) explanation of the IGeneX WB in the link below, he discusses Indeterminate bands and what all the bands mean in terms of their relevance:

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

Also, here is another great link explaining things a bit more:

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

You can call the owner of IGeneX, Dr. H, and ask for his insights on your lab results. He may suggest further testing on Band 31, for instance, which would give you some further confirmation.

We're just patients here, as you know, but a good LLMD treats Lyme based on the whole clinical picture (past tick exposures, living in a Lyme endemic region, symptoms, etc). Any test is considered added confirmation, if definitively positive, but an indeterminate test will not rule out a diagnosis of Lyme either, because it is known just how immune-suppressive Lyme is and how poor testing methods are. IGeneX just happens to include bands that were excluded from standard tests, which is why so many patients are testing negative for Lyme on standard tests. It can also take years for a person's body to produce enough antibody to test…and Lyme waxes and wanes…another problem. This is why some chronic patients will often test more positive on IgM than IgG, even though they've been infected for a long period (Dr. C explains this phenomena in the first link above).

I had been on Lyme treatments for a month or two when I got my IGeneX labs and my LLMD didn't bat an eyelid. Mind you, he just considers the tests a nice bonus if positive and it was clear I had Lyme, as I had two EM rashes. You're actually showing more positive on your bands than I was at that time. 😉

There are some LLMDs down in Florida…can't tell you much about them, but can help with ways to talk to other Lymies in FL to ask for their personal recommendations if this helps. Let us know if you choose to go this route and need an LLMD list.

Peace, Maz

[mtgas]

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

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

He called to tell me I am negative for Lyme but am a bit confused with the results (I asked him to fax me a copy)…Below are the results. Based on your experience, would you go ahead and see an LLMD? I did not stop taking antibiotics prior to 

There are some LLMDs down in Florida…can't tell you much about them, but can help with ways to talk to other Lymies in FL to ask for their personal recommendations if this helps. Let us know if you choose to go this route and need an LLMD list.

Peace, Maz

Hi Maz,

Thank you for all the information! After reading Dr. C's explanation, I am almost tempted to go to MO and see him.  🙂

You kindly sent me an LLMD list a few months ago and I have called some of the doctors on that list. Some do not treat Lyme and the ones who do are not on my insurance plan…trying to have my cake and eat it too! One office I called does not take insurance and if I heard correctly, the doctor charges $875.00 an hour. :sick:

I called the University of Miami's infectious disease dept to see if they had any recommendations and they gave me the name of a doctor, whom I have scheduled an appointment with.  However, I am not sure if he treats according to CDC standards or if he is really a true LLMD.

I would appreciate any information you could provide on getting in touch with other Fl Lymies so I can hopefully get recommendations from them. That would be very helpful. 

As a last resort, I am also willing to travel too. Had no problem going to Ida Grove to see the wonderful Dr. S…actually enjoyed a break from the city. 🙂

Thanks again,

Michelle

[mtgas]

[user=442]Trudi[/user] wrote:

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

Based on your experience, would you go ahead and see an LLMD?

Yes!

 

Thanks Trudi! I'm on it!

[Maz]

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

Thank you for all the information! After reading Dr. C's explanation, I am almost tempted to go to MO and see him.  🙂

You kindly sent me an LLMD list a few months ago and I have called some of the doctors on that list. Some do not treat Lyme and the ones who do are not on my insurance plan…trying to have my cake and eat it too! One office I called does not take insurance and if I heard correctly, the doctor charges $875.00 an hour. :sick:

I called the University of Miami's infectious disease dept to see if they had any recommendations and they gave me the name of a doctor, whom I have scheduled an appointment with.  However, I am not sure if he treats according to CDC standards or if he is really a true LLMD.

I would appreciate any information you could provide on getting in touch with other Fl Lymies so I can hopefully get recommendations from them. That would be very helpful. 

Hi Michelle,

I'm sure Kim would be happy to share more info about her LLMD, Dr. C. There are a couple others seeing this LLMD here, too. Elaine (son with MCTD) and possibly JB who is waiting for further IGeneX results before making her decision about which way to go with treatment.

If you can remember which docs on the list were no longer treating Lyme, I'd be grateful to know so I can add notes to the list for others. Thanks! 🙂 Many LLMDs will not take insurance, because they are offering a different standard of care. If you've been able to watch the politics of Lyme unfold, this has been one of the major bones of contention for chronic Lyme patients, because the IDSA (Infectious Disease Society of America) has been consulting with insurance companies (and receiving payment for these services), saying that there is no chronic form of Lyme, it's easy to treat and diagnose. :angry: This has meant that our treating LLMDs must fly under the radar, because they do recognize a chronic form of Lyme and its tagalong coinfections and they also know it's not easy to treat or to diagnose by tests. It is possible with some insurance carriers to claim back part of the consults, depending on if one has “out of network” coverage or not. If you're ready for a full chronic Lyme 101, then you might like to watch some or all of the presentations made to the IDSA last summer on this debate, with speakers from both sides (the ILADs docs are the LLMDs):

http://lymewebcast.idsociety.org/

Unfortunately, infectious disease doctors belong to the IDSA and the mottley crew of 14 panelists who wrote up the restrictive 2006 treatment guidelines which are being contested by LLMDs at the above link. So, unless this ID doc is on the LLMD list, you will likely not get very far with this doc, as they are bound by their society's treatment guidelines. A lot of very sick chronic Lymies get laughed out of ID doc offices on a regular basis and it's not only a nightmare…it's downright inhumane. There are a few of here with some tales to tell about ID docs, but won't inundate you now.

The way I found my LLMD was to join a Lyme support group (by state) on Yahoogroups. Here is a link to the groups offered for Florida, though if you are not a registered user on Yahoogroups, you'll likely have to go through the process in order to join the groups:

http://groups.yahoo.com/search?query=florida+lyme

Just a heads up…like RBF, many of these groups won't allow you to use full Lyme doc names or sometimes even initials. This is to protect our Lyme Literate docs from harrassment. If that's the case, they should tell you when you receive your welcome email upon subscribing. Otherwise, you can put out a general request for LLMD recommendations and people will email you privately with info. Every LLMD will have their own unique MO, so it's important to know what sort of doc you are wanting…one who is more allopathic, more integrative, more naturopathic, etc. Some of the best LLMDs are up and around the NYC area or in CA. So, if you want to travel to one of these (some have long wait lists but it's possible to get on cancellation lists if you can travel at short notice), we can send lists for these docs, too.

Another good Lyme resource is LymeNet (same site in which Dr C message was posted above). You may be able to find other Floridians with whom to get physician recommendations there, too, as well as to ask/search for specific Lyme-related questions:

http://flash.lymenet.org/scripts/ultimatebb.cgi?

Hope this helps a bit to get your started in your searches, Michelle!

Peace, Maz

 

[nspiker]

Hi Michelle,

My lyme tests were very similar to yours.  I had positive IgG/IgM band 41 only, and like you IND for band 31 and 39.  My test was  negative.  However, Dr. Harris of Igenex recommended the additional 31 epitope, which was positive.  I also did not do the wash-out, and was tested while on antibiotics.

I'm beginning to think we all have lyme…(singing to the tune of It's beginning to look a lot like Christmas).

nancy

[mtgas]

If you can remember which docs on the list were no longer treating Lyme, I'd be grateful to know so I can add notes to the list for others. Thanks! 
 

Hi Maz,

Thank you again for all the information. It is really helpful!

I'll send you a PM with the information on the doctors.

Michelle

[mtgas]

[user=1552]nspiker[/user] wrote:

I'm beginning to think we all have lyme…(singing to the tune of It's beginning to look a lot like Christmas).

nancy

Hi Nancy,

I agree! 

Michelle

[mtgas]

Hi all,

I did further testing on band 31 (IgG and IgM 31 kDa Epitope test) and sure enough, the IgG portion came back positive.  My primary doctor said I do not need treatment as it is not a current infection but that I have been exposed to Lyme and perhaps that is what triggered my RA.  I think he may be starting to see the connection now…something I knew all along (even before I knew about the Roadback)!

Maz, I have read elsewhere on some other posts where you have mentioned that LLMD's do not want their patients on prednisone.  I am going to try to wean off it again but what do you use instead for inflammation?

Now the next step begins…

 

[Maz]

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

I did further testing on band 31 (IgG and IgM 31 kDa Epitope test) and sure enough, the IgG portion came back positive.  My primary doctor said I do not need treatment as it is not a current infection but that I have been exposed to Lyme and perhaps that is what triggered my RA.  I think he may be starting to see the connection now…something I knew all along (even before I knew about the Roadback)!

Maz, I have read elsewhere on some other posts where you have mentioned that LLMD's do not want their patients on prednisone.  I am going to try to wean off it again but what do you use instead for inflammation?

Hi Michelle,

Well done getting the confirmation on the Band 31 etiope….now you know that you have Lyme and I don't know whether to congratulate with you or commiserate. One thing I can tell you is that it is definitely “better the devil you know!” Now you can pursue treatments to hopefully turn this beast around. Unfortunately, there is a tremendous amount of misinformation and denial about Lyme in the mainstream, but it could well be that you've planted some good food for thought with your PCP who may now begin to see things a bit differently…especially when he starts to see you improve. 🙂

Yes, LLMDs don't like prednisone, because Lyme is already very immune-suppressive and to suppress the immune system further just gives the offending pathogens a free pass to party. The only thing I've been able to use for pain has been Advil gelcaps and I have kept those to a bare minimum. I also use a naturopathic pain reliever, called boswellia serrata (not to be take while on Diflucan as it can increase its effect). This herbal is a natural aspirin without the side-effects of aspirin….but be sure to check any herbals you take for interactions with any meds you may currently be taking. There are other ways to reduce pain, too, which I'm sure others can share…I also found Tri-salts to be very helpful, taking a teaspoon in warm water once a day (in-between meals and well away from abx). Also, anything that helps with detoxing can reduce pain….epsoms/peroxide baths, olive oil/lemon detox drink, drinking lots of water, keeping bowels moving regularly, NAC (N-acetyl cysteine), ALA (Alpha Lipoic Acid), grapeseed extract, etc. Some here have used Lidoderm skin patches to help bypass the gut and bring local relief to painful joints.

Take the weaning off pred very slowly, Michelle. You might want to get yourself to a LLMD who can help you do this effectively without causing too much rebound. The antibiotic doses and combos used for Lyme vary significantly and one of the ways LLMDs judge success for a particular antibiotic is that they like to see a patient herx. However, rheumatics are a special breed, as we're on the hypersensitive side, so finding a doc who understands this, who will use the combos, but will adjust to tolerance, is the goal.

I hope something here helps, Michelle. There are others here who have weaned successfully from prednisone, so I'm sure others will chime in to offer personal insight of what worked for them.

Thanks for sharing your test update!

Peace, Maz

 

[Parisa]

Michelle,

I know you said you wanted to see if you could find an LLMD in your insurance plan.  Good luck on that.  The majority of LLMDs don't take insurance as the insurance companies then report them to the medical boards.

You said that your primary is possibly seeing the light and the connection of the Lyme and your RA.  Maybe he would be willing to help you with your Lyme treatment if he's not in charge.  We pay out of pocket for the LLMD consult fees but everything else, the meds, labs, etc. we bring back to our primary and he usually gets them authorized.  Getting better will be worth the extra fees if you can find a way to swing it. 

[mtgas]

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

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

I did further testing on band 31 (IgG and IgM 31 kDa Epitope test) and sure enough, the IgG portion came back positive.  My primary doctor said I do not need treatment as it is not a current infection but that I have been exposed to Lyme and perhaps that is what triggered my RA.  I think he may be starting to see the connection now…something I knew all along (even before I knew about the Roadback)!

Maz, I have read elsewhere on some other posts where you have mentioned that LLMD's do not want their patients on prednisone.  I am going to try to wean off it again but what do you use instead for inflammation?

I don't know whether to congratulate with you or commiserate.

Hi Maz,

I feel the same way as you stated above…I'm happy yet sad…excited to get better but scared to get started. 😕

I figured the prednisone was bad since it is immune suppressive but just wanted to make sure.  It is bad on so many other levels that I would want to get off it regardless of whether or not I have Lyme. 

I will probably do as you say and wait to start working with a LLMD before I get off it completely.

Thanks, as always, for your quick and thoughtful response!

Michelle

[mtgas]

[user=13]Parisa[/user] wrote:

 Getting better will be worth the extra fees if you can find a way to swing it. 

Hi Parisa,

I agree wholeheartedly with what you said.  You can't put on price tag on health…it's priceless.

Thanks for the tip on getting labs and meds through your primary. I do think my PCP would be willing to help me with that so that is a definite option.

Thanks again,

Michelle

[Kim]

Good luck, Michelle!

Take care…..kim

[Author]

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