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Positive IGeneX Result for Lyme help me interpret results?
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Positive IGeneX Result for Lyme help me interpret results?

8840709?1360722349
Hi everyone :)! I hope I can get some guidance and feedback on my test results as I'm kinda of confused at the moment.

Anyway as you may know I've been suffering with a lot of strange symptoms for the past 5 months and I was initially tested for Lyme and was negative except for the 41 igg band on a standard western blot. My symptoms generally include the following:

- On and off fever of up to 100.5 commonly chronic at 99.5
- Strong Fatigue.
- Strong mental cloudiness as if I can't think clearly and am always spaced out.
- Muscle twitching (However after 2 months this has subsided)
- Increase anxiety

I just felt something wasn't right so I pursued an IGeneX test which returned positive. So I was wondering if anyone could take a look at the attached jpeg file with my results from IGeneX and guide me as to weather given my current symptoms and these results if I should pursue treatment?

I know one of the bands (31) occurs if you've had a Lyme vaccine which I haven't.

So are these results definitively positive, I definitely have Lyme? Active Lyme? I'm just confused as my doctor told me I was negative, if I hadn't asked for the results in written form I wouldn't have seen IGeneX considers me positive. I also am confused as IGeneX didn't find any DNA evidence but found many IGG and IGM bands. Also I've circled the overall result in red on the first page, is that the overall result? The IGG and IGM tests seem to be strongly positive but the whole test falls into the catagory "Equivocal" cause its right on the 40 mark or is that just an example result?

Thank you guys so much for helping me out with this :)! I know that's a lot of questions I'm just confused about the results and whether they are definitely positive.
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Avatar_f_tn
Sigh.  I just typed a long response to you, but went back to look at the thumbnails again, and the whole draft message got wiped out.  Bummer.

Here's the short version:

====================================================
You say:  "My symptoms generally include the following:

- On and off fever of up to 100.5 commonly chronic at 99.5
- Strong Fatigue.
- Strong mental cloudiness as if I can't think clearly and am always spaced out.
- Muscle twitching (However after 2 months this has subsided)
- Increase anxiety
==================================================
All of these symptoms are common in Lyme.  Try taking magnesium (Mg) supplements to help the twitching and anxiety, and will also help you sleep.  Any kind of Mg that ends in "-ate", like malate, aspartate, orotate, etc., is supposed to be most absorbable, but be sure to tell your doc you are taking it so the doc can factor that in to your symptom presentation.  I have read however that the CalMag blend is NOT as effective because the quality of the Mg is not that great.  Dunno, never tried it.  

The American diet is often deficient in Mg.  I take it even now and it has a very good effect.  I like Mg malate myself.
==================================================

You ask:  "given my current symptoms and these results if I should pursue treatment?"

I say definitely yes, but only a doc can say for sure, and it needs to be a doc who understands Lyme, which the doc who ran these tests doesn't seem to do.  You need to find a Lyme specialist.
================================================

You say:  "I know one of the bands (31) occurs if you've had a Lyme vaccine which I haven't."  The vaccinations were stopped years ago, so few people have this issue.
================================================

You say:  "So are these results definitively positive, I definitely have Lyme? Active Lyme?"  I'm not medically trained, but I would DEFINITELY see a Lyme specialist, with a copy of these tests in hand.  And if these were my test results, I would believe without a doubt that I had Lyme for sure.
================================================

You say:  "I'm just confused as my doctor told me I was negative, if I hadn't asked for the results in written form I wouldn't have seen IGeneX considers me positive."

Many docs do not read the results the way a Lyme specialist will.  That's why I would get a second opinion from an LLMD.  
=================================================

"I also am confused as IGeneX didn't find any DNA evidence but found many IGG and IGM bands."

IgG and IgM (immunoglobulin G and immunoglobulin M) are your immune system's reaction to invading (Lyme) bacteria, NOT direct evidence of Lyme bacteria.  This is the usual way to test for Lyme, tho there are other kinds of tests that only Lyme specialists tend to use which look for direct evidence of Lyme bacteria DNA in your blood.

Your tests DO show evidence of Lyme, just indirect rather than direct evidence.  
================================================

"Also I've circled the overall result in red on the first page, is that the overall result? The IGG and IGM tests seem to be strongly positive but the whole test falls into the catagory "Equivocal" cause its right on the 40 mark or is that just an example result?"

I don't know how they arrive at that summary '40' number, because it's the bands that matter.  You are right, 40 is right smack in the middle.  But you feel lousy, and you've got Lyme-like symptoms, so it is reasonable to read 40 as a weak positive, but still a positive.

Keep in mind at ALL times that tests are data, not an answer.  These are NOT like pregnancy tests.  The tests are supposed to aid the doc in making a diagnosis, not substitute for the doc's own judgment.  It's like asking your mechanic if you need new tires:  You ask for a professional opinion because the mechanic sees a lot of tires and can guess pretty well whether you'll need new tires sooner rather than later.  You do NOT ask a bystander who happens to be walking past your car whether you need new tires.  They simply won't know.

--->>> Don't get hung up on not being 100% on the test:  Lyme is a *clinical* diagnosis based on history and symptoms, not solely on test results.  The tests just are NOT that accurate, because they are measuring your immune system reaction to an infection, and your immune system is set up to stop making antibodies after a short time, even if the infection is STILL present.  Lyme in particular is known to do this.
====================================================
All that being said, your tests look pretty strongly positive to me:

Your positive bands have these explanations, whether IgG or IgM, and remember that the more positive (+) the band, the stronger the reaction, and also remember that even IND (indeterminate) counts as a weak positive:

IND result on band 23-25 -- this indicates the presence of Outer Surface Protein C (OspC), which is specific for Lyme bacteria, meaning NO OTHER bacteria will produce a positive on this band

+++ result on band 31 -- Outer Surface Protein A (Osp A), also specific to Lyme

+ result on band 39 -- a major protein of the Lyme flagellin [whiplike tail] of Lyme bacteria, also specific to Lyme

+ and +++ results on band 41 -- flagellin [whiplike tail] of all spiral-shaped bacteria, of which Lyme is one, so may indicate Lyme or some other infection like syphilis

+ result on band 58 -- may or may not relate to Lyme, uncertain

+ result on band 83-93 -- this is also specific to Lyme
===================================================
Now having sat here and typed all this out, I would say get yourself to a Lyme doc.  You have a high number of strong positives for Lyme-specific bands, to my untrained eye.

Remember:  any doc who looks only at the tests and not at you and your history and symptoms is not going to do well in diagnosing Lyme-or-no-Lyme.  Lyme is ALWAYS a clinical diagnosis aided by test results, and the tests are so iffy that they miss lots of infected people.  So anyone with strongly positive test results is fairly certain to have Lyme.  That means YOU.
=====================================================
Also know that these tests do NOT cover any of the other diseases that the same Lyme ticks carry about half the time:  bartonella, babesiosis, and a few others.  Based on your symptoms, a Lyme doc will know what to test for.  These infections need different testing from Lyme and also usually different meds.  

The sooner you are tested fully and treatment begins, the sooner you will be better.  Don't put it off.  I know it's tempting, but you've nothing to gain by delay, and the longer you wait, the harder it can be to effect a cure.

If you need help finding a Lyme specialist, email to

                   contact [at] ILADS [dot] org

and tell them where you are and where you can travel to to see a Lyme doc. You will see the term LLMD, which is patient slang for 'Lyme-Literate MD', meaning a doc who understands Lyme in the ILADS way.  Your recent docs, while well-meaning, do not appear to be LLMDs.  There is an ugly split in the medical community over Lyme, and patients are caught in the middle.

But getting properly diagnosed and treated is worth it ... because Lyme will not go away by itself.  Don't wait, just do it.  You'll get your life and your health back when you're fully treated.  I did, and it was worth all the hassle and doubt.  Just do it.  I was afraid to start the meds and put it off for a while, but I never felt worse on the meds than I had without them, and I steadily improved and got well again.  I got my life back.  I wish the same for you.

Let us know how we can help, and how you do.  Hang in there -- you came this far, and you can go the distance.  J.
15 Comments Post a Comment
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Avatar_f_tn
Sigh.  I just typed a long response to you, but went back to look at the thumbnails again, and the whole draft message got wiped out.  Bummer.

Here's the short version:

====================================================
You say:  "My symptoms generally include the following:

- On and off fever of up to 100.5 commonly chronic at 99.5
- Strong Fatigue.
- Strong mental cloudiness as if I can't think clearly and am always spaced out.
- Muscle twitching (However after 2 months this has subsided)
- Increase anxiety
==================================================
All of these symptoms are common in Lyme.  Try taking magnesium (Mg) supplements to help the twitching and anxiety, and will also help you sleep.  Any kind of Mg that ends in "-ate", like malate, aspartate, orotate, etc., is supposed to be most absorbable, but be sure to tell your doc you are taking it so the doc can factor that in to your symptom presentation.  I have read however that the CalMag blend is NOT as effective because the quality of the Mg is not that great.  Dunno, never tried it.  

The American diet is often deficient in Mg.  I take it even now and it has a very good effect.  I like Mg malate myself.
==================================================

You ask:  "given my current symptoms and these results if I should pursue treatment?"

I say definitely yes, but only a doc can say for sure, and it needs to be a doc who understands Lyme, which the doc who ran these tests doesn't seem to do.  You need to find a Lyme specialist.
================================================

You say:  "I know one of the bands (31) occurs if you've had a Lyme vaccine which I haven't."  The vaccinations were stopped years ago, so few people have this issue.
================================================

You say:  "So are these results definitively positive, I definitely have Lyme? Active Lyme?"  I'm not medically trained, but I would DEFINITELY see a Lyme specialist, with a copy of these tests in hand.  And if these were my test results, I would believe without a doubt that I had Lyme for sure.
================================================

You say:  "I'm just confused as my doctor told me I was negative, if I hadn't asked for the results in written form I wouldn't have seen IGeneX considers me positive."

Many docs do not read the results the way a Lyme specialist will.  That's why I would get a second opinion from an LLMD.  
=================================================

"I also am confused as IGeneX didn't find any DNA evidence but found many IGG and IGM bands."

IgG and IgM (immunoglobulin G and immunoglobulin M) are your immune system's reaction to invading (Lyme) bacteria, NOT direct evidence of Lyme bacteria.  This is the usual way to test for Lyme, tho there are other kinds of tests that only Lyme specialists tend to use which look for direct evidence of Lyme bacteria DNA in your blood.

Your tests DO show evidence of Lyme, just indirect rather than direct evidence.  
================================================

"Also I've circled the overall result in red on the first page, is that the overall result? The IGG and IGM tests seem to be strongly positive but the whole test falls into the catagory "Equivocal" cause its right on the 40 mark or is that just an example result?"

I don't know how they arrive at that summary '40' number, because it's the bands that matter.  You are right, 40 is right smack in the middle.  But you feel lousy, and you've got Lyme-like symptoms, so it is reasonable to read 40 as a weak positive, but still a positive.

Keep in mind at ALL times that tests are data, not an answer.  These are NOT like pregnancy tests.  The tests are supposed to aid the doc in making a diagnosis, not substitute for the doc's own judgment.  It's like asking your mechanic if you need new tires:  You ask for a professional opinion because the mechanic sees a lot of tires and can guess pretty well whether you'll need new tires sooner rather than later.  You do NOT ask a bystander who happens to be walking past your car whether you need new tires.  They simply won't know.

--->>> Don't get hung up on not being 100% on the test:  Lyme is a *clinical* diagnosis based on history and symptoms, not solely on test results.  The tests just are NOT that accurate, because they are measuring your immune system reaction to an infection, and your immune system is set up to stop making antibodies after a short time, even if the infection is STILL present.  Lyme in particular is known to do this.
====================================================
All that being said, your tests look pretty strongly positive to me:

Your positive bands have these explanations, whether IgG or IgM, and remember that the more positive (+) the band, the stronger the reaction, and also remember that even IND (indeterminate) counts as a weak positive:

IND result on band 23-25 -- this indicates the presence of Outer Surface Protein C (OspC), which is specific for Lyme bacteria, meaning NO OTHER bacteria will produce a positive on this band

+++ result on band 31 -- Outer Surface Protein A (Osp A), also specific to Lyme

+ result on band 39 -- a major protein of the Lyme flagellin [whiplike tail] of Lyme bacteria, also specific to Lyme

+ and +++ results on band 41 -- flagellin [whiplike tail] of all spiral-shaped bacteria, of which Lyme is one, so may indicate Lyme or some other infection like syphilis

+ result on band 58 -- may or may not relate to Lyme, uncertain

+ result on band 83-93 -- this is also specific to Lyme
===================================================
Now having sat here and typed all this out, I would say get yourself to a Lyme doc.  You have a high number of strong positives for Lyme-specific bands, to my untrained eye.

Remember:  any doc who looks only at the tests and not at you and your history and symptoms is not going to do well in diagnosing Lyme-or-no-Lyme.  Lyme is ALWAYS a clinical diagnosis aided by test results, and the tests are so iffy that they miss lots of infected people.  So anyone with strongly positive test results is fairly certain to have Lyme.  That means YOU.
=====================================================
Also know that these tests do NOT cover any of the other diseases that the same Lyme ticks carry about half the time:  bartonella, babesiosis, and a few others.  Based on your symptoms, a Lyme doc will know what to test for.  These infections need different testing from Lyme and also usually different meds.  

The sooner you are tested fully and treatment begins, the sooner you will be better.  Don't put it off.  I know it's tempting, but you've nothing to gain by delay, and the longer you wait, the harder it can be to effect a cure.

If you need help finding a Lyme specialist, email to

                   contact [at] ILADS [dot] org

and tell them where you are and where you can travel to to see a Lyme doc. You will see the term LLMD, which is patient slang for 'Lyme-Literate MD', meaning a doc who understands Lyme in the ILADS way.  Your recent docs, while well-meaning, do not appear to be LLMDs.  There is an ugly split in the medical community over Lyme, and patients are caught in the middle.

But getting properly diagnosed and treated is worth it ... because Lyme will not go away by itself.  Don't wait, just do it.  You'll get your life and your health back when you're fully treated.  I did, and it was worth all the hassle and doubt.  Just do it.  I was afraid to start the meds and put it off for a while, but I never felt worse on the meds than I had without them, and I steadily improved and got well again.  I got my life back.  I wish the same for you.

Let us know how we can help, and how you do.  Hang in there -- you came this far, and you can go the distance.  J.
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1763947_tn?1334058919
Another voice agreeing 100% with what Jackie said so well .
So you have 2 opinions.

We are here for you. Good luck.
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Avatar_f_tn
All I can do is affirm everything Jackie has adised.

Definitely seek treatment, but don't bother even wasting time with the doc who told you you were negative because it's obvious he doesn't know about lyme and thinks it's a trivial illness, when in fact it is a devastating one.

Go to www (dot) ilads (dot) org and ask them to recommend a doc in your area.
Be prepared for a long waiting list.

Do try taking megnesium.

Also when you're spaced out, try to get outside into an oxygen rish environment eg. near trees and see if this helps, the spaciness can be low oxygen levels.
Don't be tempted to have too much caffeine, over the long term this does you a lot of harm and weakens your ability to fight off the infection.

I also recommend taking vitamin C (if you aren't already) and also a really good probiotic - there is nothing more effective you can do to help your immune system than probiotics. Healthy people have 90% of hteir immune system busy in the gut all the time, keep the balance of flora correct. If you take probiotics you help it hugely, freeing up immune system power for the fight against Lyme bacteria around your body.

These suggestions are to hold the fort while you wait to get an appointment with a competent, lyme-expert doctor.
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Avatar_f_tn
I also agree that you have Lyme.  I had my blood draw for IGeneX testing a couple hours before I ended up in the ER with severe abdominal and rib pain and a swollen liver. They admitted me for three days and I barely moved the first day and a half while morphine gave me desperately needed relief. I had over 70 symptoms, including cognitive problems, brain lesions, GI issues, and mystery pain.  I was one sick puppy.  

When my IGeneX results came back, I only had bands 18, 31, and 41 on the IgM. On the IgG I only had 41, with an IND at 31. (I'd had it for 6 years. Apparently my body still considered it a "new" infection.) I also had a 40 on the IFA, an alternative screening test to the ELISA.  I was surprised I would test barely equivocal when I was so sick, but such are the flaws of these tests.  IGeneX has observed that people with neuro symptoms and people sick a year+ are more likely to show band 31.  This was excluded from the CDC interpretation as the pending Lymerix vaccine would show positive on that band, along with band 34. The vaccine was a disaster, but the CDC never revisited the testing protocol to consider those bands.

Had I been tested at any other lab, I would have shown no signs of Lyme at all.  The CDC interpretation ignores multiple Lyme specific bands, because they were not believed to be significant back in 1994 when they came up with the test interpretation.  They believed that enough of the other bands would show up if the presence of Lyme. This was based on a statistical analysis of New England based early Lyme patients.  It has never been validated with the genetic strain variations of the Midwest, south, or west. Fast forward nearly 2 decades later, and thousands of us suffer more than we should because of the poor testing interpretation.  (Sorry if I already told you all this before!  I still have some short term memory problems!)

Doctors don't know about the different bands and the controversy over the test interpretation, so your doc is just following the CDC.  Recently, the CDC did put something on their website about how a negative does not exclude Lyme.  Also, the Virginia State Legislature is debating a bill to require telling people with negative Lyme tests that a negative test does not exclude it.  (The IDSA is fighting it hard.) But even if you could convince him about the other bands, he would probably only give you the recommended three weeks of doxycycline, which is unlikely to cure you.

As long as other reasonable possibilities have been excluded, it really sounds like you have disseminated Lyme and you need antibiotics. A LLMD is your best hope.  You'll probably need to travel to get to one.  Do whatever it takes!  Lyme does not go away by itself.
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Avatar_m_tn
Thank you all for taking the time to help and share all that great info! I'll definitely go see an LLMD. I've found several that I'm considering and hopefully I can get an appointment with one of them in the near future!

Rico I'm sorry to hear that you got so sick I hope you're feeling a lot better :)! I have one more question as I've heard a lot of stories of people like you and others who have gotten very sick with Lyme, have horrible muscle and joint pain etc. But I don't have any of those symptoms and never really have I've had some strange things happen to me like unexplained racing heart and even at one point some strange episode of blindness / really bad visual interference.

But anyway I don't seem to be the typical case as my symptoms generally just include really bad fatigue, bad mental cloudiness, and maybe a chronic low grade fever of 99.5+ (if that's not my normal temperature). I've had muscle twitching though this went away after 2 months.

I know I have to be my own advocate and push for a doctor that will believe I have Lyme but its hard for me to do that when my symptoms don't seem to be nearly as severe as most with Lyme. Is it possible to have just the symptoms I have and have Lyme? No muscle pain, skeletal pain or anything like that? Its just for over a year all my symptoms while severe in they're own way have always been so vague and hard to explain. If I know that's possible with Lyme I'd feel more comfortable ignoring my GP and finding a doctor who believes I have Lyme.

Anyway thank you guys for your help and opinions they mean a lot :)!
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1094370_tn?1317138425
Hi Neptune,

Yes, you have lyme.  I also have lyme (by Igenex) but don't have joint/muscle pain either.  My symptoms are mostly neuro (like twitching/vibration feelings in leg/foot, stabbing in eyes, on/off numbness in foot/toe/face).  

Everyone's symptoms are different because of different co-infections, etc.  

Jackie/Rico I'm sure will chime in on this, but again, just because you don't have joint/muscle pain does not in no way mean that you don't have lyme.  I would say that based on your Igenex tests AND the fact that you tested positive on a co-infection...my lyme doc would say that there is "NO DOUBT" that this is lyme.

Carrie
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Avatar_f_tn
Ditto what Carrie says -- my symptoms were not joint-related ...

I felt like I had a cross between the flu and a hangover.  That is, I felt like heck, but not the joint pain thing.  Just tired and confused and slightly cranky and like something was wrong, but nothing more specific.

I also dragged a family member in to be tested for Lyme when I was diagnosed, on the theory that we had been all the same places tromping through leafy glades, and whaddaya know, despite protests of "I feel fine!", said family member was also diagnosed as strongly positive for Lyme and babesia, the same two infections I had.

A strong immune system can carry you a long long way with Lyme, but eventually the bugs will catch up with you when your immune system gets overloaded through work or other illness or life stress.  
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Avatar_m_tn
Thank you for your help :)! That's reassuring to know I don't have to have joint pain to have Lyme at least I can feel more confident that I'm right about pursuing treatment.

Also you said I tested positive for a co-infection? I don't see that on my test results unless I'm not seeing something you guys are xD. But I think I'll get tested for the co-infections as-well as I guess those commonly come with Lyme?

Anyway thanks for your help :D!
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Avatar_m_tn
Wow! That's almost exactly how I feel! I feel like I'm constantly fighting off something. Cross between a flu and a hangover that's a great way to describe it :D.

Thanks for the info its great to know Lyme isn't strictly bone / joint pain as my GP led me to believe in fact my lack of those symptoms was one of the main reasons he discounted the IGeneX test and wouldn't prescribe any treatment. Hopefully the Lyme is what's making me feel so crummy and maybe I'll feel better after treatment.

Strangely I feel almost relieved that I might actually have Lyme as I've been to soooo many doctors and hit so many dead ends its insane and so tiring. It'd be nice to finally have some proof its not all in my head :/

Glad you and your family member got diagnosed and are feeling better :D!

Thanks again!
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Avatar_f_tn
It's not surprising that your doc wouldn't test you for anything else, largely because docs who are as clueless as that doc seems to be often do not know much if anything about co-infections and that Lyme ticks carry one or more co-infections about half the time.  Co-infections are completely separate diseases with different symptom constellations, and they need different tests from Lyme as well as (usually) different meds.  I had babesiosis along with Lyme, and 'babs' is related to malaria, which is a whole different gig from the Lyme family.  Different meds altogether.

That's why finding an LLMD is key to getting properly diagnosed and then treated.  An LLMD knows how to parse symptoms of different infections, but even then the test results are not immediately obvious.  

A friend of mind didn't find out that a co-infection was present until the Lyme treatment wasn't proceeding as expected, because the co-infection was being masked somehow by the immune system.  There is so much docs don't yet know, and the tests are so iffy, so be prepared to roll with the punches.  

Again, this is why the right doc -- an LLMD -- is so critical to your well-being.  And also know that not all LLMDs are created equal, and if you get a dud or somebody who just doesn't seem to work with you or tries to sell you a zillion dollars worth of his/her own brand of vitamins, quietly search for a new doc on the side and then make the shift quietly.  

A good doc will always hand you copies of ALL your test results as they are being discussed with you, and so if you need to shift docs somewhere along the line, you can do so with your own binder full of past tests without having to beg for them at the old doc's office.  Office staff can be really snotty about all that, and I find that they copy only things they think I need to know ... when by law they are REQUIRED to hand over everything.  The problem is, you don't know what they haven't given you, and you will likely never know, but it could be information critical to your next doc's approach.  Office staff has NO way of knowing what is or may be important later -- they just want to keep the toner-and-copy-paper budget down.

Don't fall for that.  Get and keep your own set of docs ALWAYS.  You paid for them and they are yours.  Your new doc may see things and trends in those old tests that the old doc didn't, and without historical data, the new doc can't look back for trends or blips.

Sorry to lecture, but historical data is critically important in presenting a full picture to a doc, and Lyme docs are esp. interested in longitudinal views.

So you go!  Keep us posted.
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Avatar_m_tn
Thank you! Yeah I realize historical medical records and data are very important in diagnosing Lyme so I've been gathering up old test results such as Liver and other tests that came back abnormal and maybe those will help in diagnosis.

I've also scheduled an appointment with an LLMD of sorts at the KU Medical Center for April 29. That just seems so far away :( I wish I could find something sooner or get some kind of help sooner but I guess if I've waited this long I might as well wait another two months. Though I know the longer Lyme goes untreated the harder it is to get rid of. Is it normal to have to wait more than two and a half months for a first appointment?

I'm also considering going back to my GP while he did discount my Lyme test from IGeneX he's really an open minded doctor and has seen me all my life so considering my test results were so close to positive even by CDC standards (one band and one indecisive band away from positive) maybe he'll reconsider treating me for Lyme. I could see him way earlier. Is that a good idea or should I leave it to the LLMD in April?

Thanks again everyone :)
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Avatar_f_tn
To clarify my symptoms, I have never had any muscle or joint pain, also known as musculoskeletal symptoms.  I am a true case of neuroborreliosis, as are you.  We are not as rare as doctors think we are.  Also, there is not a single symptom that is "required" for Lyme.  Some people don't even have the very typical fatigue!

Unfortunately for us exclusively neuro cases, the most influential voices about Lyme are stuck in their New England centric view of the world where neuro Lyme is much less common than musculoskeletal Lyme.  (Many Lyme patients do have both.)  They continue to insist that neuro symptoms are very rare, which makes it hard for doctors to believe a patient has it.  

I am also convinced (from anecdotal stories) that people with neuro Lyme are more likely to test false negative, which of course feeds the belief that neuro Lyme is rare. It's a vicious cycle.

If you can convince your doc you have it with your Lyme specific bands, that will at least get you an official diagnosis and get you started on antibiotics,  but I highly doubt that the standard therapy he would give you will cure you.  I thought I could convince a couple of my docs, too, but I didn't. You'll have to see a LLMD who will treat you until you're well.

Taking three weeks of Doxy and then waiting another year before deciding to try abx again can possibly make it worse. LLMDs say its common for incomplete treatment to make it harder to cure later. I had a week of Augmentin (strongpenicillin) when I first got infected. It cleared my symptoms right up.  But I am convinced that what was left behind was the tougher-to-kill bugs that went into hiding, only to torment me later.  Once you start treatment, you'll want to stick with it until you're well, if possible.

You'll need to get tested for Bartonella, too.  I was surprised when I turned up positive for it.  In hindsight it made sense, but every possible Bart symptom that I had could also be caused by Lyme.  I wasn't an obvious case of Bart, but, I did have two big red flags for it: a preponderance of neuro symptoms and extensive GI involvement.  Dr. Burrascano says both signs point to a coinfection of Bartonella.  It took me five months of Bart meds to kick it.  I knew it was gone when my anxiety stopped.

Chronic fatigue and mental cloudiness were my first two chronic symptoms, nearly five years after my initial infection.  I couldn't shake the crummy feeling that I was coming down with something.  Six months later, shortness of breath kicked in. I was misdiagnosed with allergies and asthma and went to a pulmonologist, allergist/immunologist, ENT, and Cardiologist while my breathing just got worse. But none of them could figure out what was wrong with me.  No one ever thought of Babesia (which we now know was causing my air hunger and shortness of breath).  Hopefully you don't have it!!

This all took over a year.  If I had tested positive for Lyme at this point I am sure the docs would have concluded it was a false positive. I just didn't look like what they EXPECT a Lyme patient to look like.

After a shot of steroids for my supposed asthma, I ended up in the ER, much worse. They couldn't find anything and gave me more prednisone.  I am confident this I why I got so sick over the next 3-4 months. I racked up a new symptom every few days, accelerating downward rather quickly.

I ended up with brain lesions, cognitive problems, headaches, twitching, tingling, hormone imbalances, and lots of digestive problems including malabsorption, malnutrition, h.pylori, and leaky gut.  My pain was in my ribs and my abdomen.  My gut sounded like "World War 3" according to one of my hospital nurses. I had partial paralysis of my gut, cysts in my liver (we'll see if they go away), pancreatic insufficiency, adrenal fatigue and kidney insufficiency.  I went to see a nephrologist who told me that Lyme doesn't affect the kidneys. I couldn't believe it.  There is undisputed documentation that it does, she was just unaware of it.

Enough about me!  I just wanted to let you know that I started out like you, and eventually got worse. There is plenty of misery in Lyme even if you don't have muscle or joint pain.

So, whatever you do, don't agree to any steroids or immune suppressants.  Do not hesitate to ask first about any medication or injections anyone wants to give you.

And get yourself an appointment with an LLMD ASAP.  Keep us posted!

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You're doing very well at pondering and thinking things through.  Lyme made it really hard for me to do that, because half the time I couldn't have told you what year it was, much less anything more detailed.  So bravo!

It can't hurt to see your GP ... with the following provisos:  

-- will it mess up your insurance coverage?  I don't know how closely insurance companies monitor what docs you are seeing and whether they think you are doubling up.  This probably isn't an issue, but just thought I'd mention it.

-- if the Lyme doc tells you to do X and Dr Regular tells you to do Y, would Dr Regular rat you out to your insurance company in some fashion if you follow Dr Lyme's treatment, or would Dr Reg rat out the Lyme doc to the local or state medical board?  I don't know what the politics of Lyme are in your state (Kansas, yes?), but in some places, Dr Regular might be obligated or feel obligated to report Dr Lyme to the medical authorities, and that can get ugly .... lost medical license, etc.  It has happened to some very well known LLMDs, and we need them fully functional and practicing.

At the very least, Dr Regular may refuse to see you if you are following a treatment approach that he considers wrong, so that he cannot be accused by the state medical board or his hospital ethics board of collaborating in improper (nonIDSA, nonCDC) treatment approaches.

You may wish to take the risk, and tell Dr Regular what you are doing, but to shield the name of Dr Lyme.  Lots of choices to make.

--Even if Dr Regular is willing to treat you, he will very likely treat according to CDC standards, which means a couple weeks of antibiotics and you're done.  Dr Regular is unlikely to agree to treat acc. to Dr Lyme's approach, in my understanding of how the politics and professional requirements run.  And Dr Regular may not test for possible coinfections, of which there are several and can be costly if not for you then for the ins. co.

--If I were weighing whether to wait a few weeks to see Dr Lyme vs seeing Dr Regular sooner and hope that he would adopt a more aggressive treatment approach, I'd wait for Dr Lyme.  Dr Regular will not know HOW to think like an LLMD, even if he is willing to do so.

--You can ask to be put on the cancellation list at Dr Lyme's office.  Tell them how long to need to get to their office ("2 hour drive") so they will know whether to call you for a newly available slot.  My LLMD spent a long first appointment with new patients, to take a history and do a thorough exam.  Not all docs are that hands on, but if Dr Lyme is like my LLMD, it will be harder to get a cancellation just because there are fewer of the long, initial appointment slots.  But you get what you pay for, and Lyme is a long ride.

But let me back up a step:

When you say the KU doc is an "LLMD of sorts", what does that mean?  Is he/she an ILADS member?  Do you have any data from other patients about the doc?  There is no test to take to be an LLMD, and there are some docs who practice in ways that I would not want, just based on what I learned from reading about Lyme and asking everybody I knew who had any brush with Lyme.  There are docs who THINK they are LLMDs, but do odd things imo ... because Lyme is a developing field of an emerging disease, and there is no hard and fast approach to diagnosis and treatment.  

So there are many decision points, and none of them is wrong if it works, and sometimes the only way to know is to go try.  You could go the KU doc while keeping the LLMD appointment to see if Dr KU works out, then cancel the LLMD appointment.  Press ahead on all fronts, but not to the extent that you mess up other people's chances of getting to see the LLMD ... like cancelling so late that others miss getting a slot with that doc.

Sorry to lecture like a crank here .... it's been a long day and not over yet.  

Your whole approach has been very thoughtful, and I'm sure it will continue to be.  Wishing you well!
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One more resource for you... On drjoneskids.org there is a list of links on the left. Click the one that says "Lab Tests."  

There is a paragraph there explaining some of the problems with the tests, but the real bonus is a link to a Johns Hopkins study showing how poor the testing is.  The first three sentences in the paper describe how a Lyme diagnosis is primarily clinical and that testing can be helpful, especially if symptoms are atypical or confusing. However, it also says that "no single test is optimal."  

I had never seen this study before and it is stunning. Dr. Paul Auwerter is one of the authors and a frequent spokesman for the Lyme denying and minimizing crowd. And yet, this study shows how abysmally bad the blood tests are and states that Lyme is primarily diagnosed on a clinical basis.  This is in complete contrast to the current IDSA and CDC information.

In spite of this study, run in 2001-2002 and published in 2005, the IDSA did not update it's guidelines, nor did the CDC reevaluate its test protocol.  Both organizations discourage diagnosis of Lyme without CDC positive test results, and go so far as to say a positive result in a so-called non-endemic area (outside New England and the upper Midwest) is most likely a false positive!  

Doctors have been instructed that they must not diagnose Lyme unless they're sure, and very few are "sure" without the winning test result.

Copies of this page of drjoneskids website and the JH study may help convince a doubtful doctor.


Johns Hopkins Lyme Test Study:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1248466/pdf/0742-05.pdf


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Additional note:  the link to the JH study doesn't work directly.  This link only works from the drjoneskids website.  You can probably find it on the NIH website.
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