Just Got Diagnosed with Lyme and Babesia

[RichFly]

Very happy to find this board as I wanted to throw out a few questions to the informed group.  I came down with a nasty sickness in early October and after a slew of blood tests including 3 different Western Blot Tests which all came back negative I decided to do a full panel with Igenex and it came back positive for Lyme and babesia.

My doctor who is semi-lyme literate (says she studied under Dr. Horowitz in NY though for how long no idea) perscribed Zithromax and Mepron.  Not sure dosage or how long since I haven't picked up yet.  Also suggested diet changes of low sugar, lean proteins, lots of veggies, and avoid inflammatory foods (dairy, gluten, alcohol, etc.)

A few questions if you don't mind.

1.  How could I get 3 different Western Blot tests all come back negative but IGenex says positive?  Could this be  a false positive?
2.  Does the above regimen sound like a good first step considering I've had this for 6 months?
3.  Any other suggestions on improving my body's ability to eradicate this?

Thanks so much,
Richard

[JackieCalifornia]

Things are still changing in the Lyme+ world, so what was standard treatment not long ago may now be passe.  I would expect a cystbuster would be necessary ....  having Lyme longer doesn't get around the cyst aspect.  

[RichFly]

Thanks Ephedra yeah I believe its the babesia as I never had it either until I stated the meds.  I'm seeing a LLMD in NYC recommended by one of the top LLMD doctors in CA (Dr. G).  He wants my first born son to pay for the consultation but when you're fighting a chronic potentially life near ending disease like this money shouldn't be an object.

Lyme comes in 3 forms the spirochete (bloodstream), Intracellular and Cyst.  The Zith works for babesia as well as the Intracellualr.  I'm going to ask the new doc if adding a tetracycline right now would help to eradicate the babesia and 2 forms of Lyme.  In terms of dealing with the cysts not sure if it has to be treated since I'm 6 months into the disease.

I found a great website that lists all the drugs and what they effect thought I'd pass it along.

http://www.anapsid.org/lyme/matthewgoss/drugs.html

[Ephedra]

Sorry if I repete anything, I couldn't read all that. But I get the chest pressure you speak of. Never had it until starting treatment, particularly for Babesia. Sounds more like a Babesia symptom, maybe a herx.

This is a good combination for Babesia. It's best to have a cell wall drug in addition to the Zith for the Lyme, and at some point a cyst buster. Lyme has at least three different forms we need to get.

[mojogal]

I actually got heart failure from Lyme or one of the co's. I finally found a Lyme aware cardiologist and will see him in a few weeks

[JackieCalifornia]

Glad you're going to check out the ILADS-doc --

About the chest pressure, it's not something I had, but I just searched online for several search terms, and one that had some interesting data was in response to this search term:

     -- lyme heart block treatment --

Lyme can mess with the heart (e.g., Lyme carditis) and it's something to pay attention to, so you might want to see your current doc for a check in but also keep the appointment with the new doc just in case.  

(You don't necessarily need to tell Old Doc that you are already lined up to see New Doc.  In this situation, I think I personally would see Old Doc, keeping quiet about New Doc, but also seeing New Doc as soon as she returns.)  Forging ahead on multiple fronts is sometimes part of the Lyme cha-cha.  Try not to worry -- but do forge ahead.

[RichFly]

Thanks again Jackie.  The stomach situation isn't persistent and tolerable so I'm not ready to call the doctor.  It hasn't returned so until I see a pattern I'm not going to chalk it up to any adverse reaction.

What I have noticed (and it started yesterday) was some pressure in my chest area right around the heart.  No breathing problems or anything just some pressure.  I need to watch and see what happens.  I looked up side effects of Zith/Mepron and neither affect the chest so maybe this is a Herx-like sign of the bugs being affected?  Note I've never had chest issues since I became sick.  Thoughts?

I found a doctor close by who served as the chariperson for ILADS so I'm definitely going to call her she's been doing this a LONG time.  Unfortunately she's on vacation until next week but hopefully I can get in with her soon.  Keep ya posted.

[JackieCalifornia]

Sorry to hear you are having such a rough time.  Here are some thoughts, but remember no one here (that I know of) is medically trained, so this is from our various experiences and readings ....

You say:  "I'm concerned with my current doctor because she gave me medicine for 4 weeks and i'm seeing her in 6 weeks.  I think this is Lyme 101 that you don't 'stop' treating the infection until you're symptom free for a few months so there's no reason for me to stop any treatment after a month.  If she can't get this right what else is she not going to know?"  It's a very good question that I don't have an answer to.  Consider calling the doc's office and leaving a message to the effect that "The pharmacy filled only 4 weeks medicine, but my next appointment with you is 6 weeks out.  Should the pharmacy have filled an additional 2 weeks of treatment?"

This approach is not questioning the doc's abilities, and may get you a useful message back.  Then you can decide whether to find another doc for a second opinion.  If you think things are not going to change or have other concerns about this doc, then start looking for another doc now and get an appointment as soon as possible; tell the 'new' doc's office people that you are seeing a doc who has prescribed 4 weeks but won't see you again for two additional weeks after that, and you are unsure of that approach and would like to a different MD as soon as possible.  

Lyme docs can have long wait lists for a first appointment, so I would be inclined to take the chance by laying your situation out on the phone to the receptionist so the sense of urgency is understood.

You say:  "We also haven't discussed treating the Lyme.  What she handed me for babesia approach was basically something almost right off the ILADS website so I'm afraid if I deviate at all she won't know what to do."  As I recall, the ILADS website is pretty good, so I would consider it a good thing if the doc is following the ILADS playbook.  My doc treated babesia first, then moved on to treat Lyme.  And in any event, a wise doc will deviate from protocol as needed.

You say:  "I'm on day 3 and my stomach is being rocked with cramps and diarrhea."  Did the doc prescribe or suggest that you take these specific probiotics?  TELL the doc's office of this side effect so that adjustments can be made.  Don't wait for the next appointment, and make clear when you call the doc's office that you are having a bad reaction to the meds, so they don't blow you off.  Be persistent; nice, but persistent.  That's how doc's office do triage.

It sounds like you chose the probiotics, and if the doc didn't suggest any particular formulation or brand, then it was obviously a reasonable thing for you to do.  But I'd make this issue part of the upcoming conversation with the doc or the doc's office.  Not all probiotics are created equal.  My doc indicated Florastor, so you might try that.  I had problems with it, but my doc said I was the only person he ever saw have that reaction, so I wouldn't let that scare you off, but *do* talk to your doc's office first.

You say, "Also is there any other things I can do to calm down the stomach/diarrhea?"  This is something you should definitely escalate to the doc's office.  If you don't get satisfactory response, then I'd be thinking of shopping for a new doc very soon.  Rather than fire the current doc and then go looking for a new one, start looking NOW for a new doc, and if you find one you want to switch to, then do it pronto.  Lyme etc. are cutting edge medicine, and not all docs are suitable for all patients.

"My babesia is on a 7 day cycle and hits me harder on Mon/Tue so I'm anxious to see if there's any change in the severity of it coming up.  I know it's early and if there isn't a change don't give up hope as I can be on this regime for months if not others but some positive movement is welcome whenever it happens."  Regardless of which doc you see now and in the future, *always* report severe symptoms, and don't be a hero.  Call or fax or email the doc's office with details of your misery -- unless I know the doc has an experienced and serious staff, I'm inclined to put my concerns in writing.  I try to make friendly with the staff just on general principles and also because they are inclined to be less resistant if I really need something from them or the doc, but sometimes it just doesn't work.  My motto:  'whatever works.'  

I had no problems with treatment at all, and I tend to be sensitive to many meds and treatments, so don't be shy about elevating this to your doc and don't be a hero and wait.
============================================
[Wording in "quotes" below is from the Columbia University Lyme website:]

"Treatment

"Combination therapy with atovaquone (Mepron) and azithromycin is most commonly recommended for treatment of mild to moderate babesiosis. Treatment is usually continued for 7-10 days. A combination regimen of oral clindamycin and quinine has also been proven effective, but the rate of adverse reactions is significantly higher with this combination, so it is not recommended for treatment of uncomplicated disease."

[Note from Jackie:  7 to 10 days of treatment sounds short to me, based on my memory of how my Lyme doc proceeded.  I was treated with Mepron and zithromycin, as stated above, but for longer.  My doc is pretty aggressive that way, bless his heart.  Lyme is still a developing field, so things aren't all the same everywhere, and if you're not comfy with how things are going, then consider quietly finding a new doc before blowing off the current one.]

"For patients with severe babesiosis, however, intravenous clindamycin and (oral) quinine is considered the preferred treatment, again for 7-10 days."  [Note from Jackie:  This may be outdated, dunno.  My doc didn't use either clindamycin or quinine to treat me.]

"In patients with underlying immunosuppression and persistent signs and symptoms, studies have shown an association between longer treatment duration and a positive outcome; therefore, treatment of these individuals should be continued for weeks or months until blood smears are negative for at least two weeks. Extended treatment is not considered necessary for immunocompromised patients who respond clinically to the 7-10 day treatment course."  [Note from Jackie:  again, this makes sense except the last sentence.  Longer treatment is generally better and I think is the standard of care currently, even tho these quotes above are dated only 6-7 years ago.  Things change fast.]

"Centers for Disease Control & Prevention, 2009.
"Cunha BA. eMedicine.com, 2008."
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So, bottom line, don't be afraid to doctor-shop for a new one if you think it's warranted -- Lyme is not wholly understood even yet, and it pays to stay nimble to have the best shot at getting well, and quickly.  

If you aren't ready to ditch Doc A yet, consider going to see Doc B and tell him/her you are considering changing MDs -- be sure to take copies of ALL your tests from Doc A, to show to Doc B.  Then decide what to do.  I saw a lot of docs before one of them finally tested me for Lyme, but then the doc gentle told me that I didn't have Lyme because I wasn't sick enough ... and I was terribly ill and had been for months and months.  

Let us know how we can help -- you can beat these bugs!  

[RichFly]

Thanks Jackie.  I'm concerned with my current doctor because she gave me medicine for 4 weeks and i'm seeing her in 6 weeks.  I think this is Lyme 101 that you don't "stop" treating the infection until you're symptom free for a few months so there's no reason for me to stop any treatment after a month.  If she can't get this right what else is she not going to know?

We also haven't discussed treating the Lyme.  What she handed me for babesia approach was basically something almost write off the ILADS website so I'm afraid if I deviate at all she won't know what to do.


I'm on day 3 and my stomach is being rocked with cramps and diarrhea.  I was hoping to avoid this by using Probiotics but so far no.  The probiotics I'm using are the Nexabiotic 21-strain Probiotic.  I originally picked them for the # of strains and high organism content (15 billion per pill).  If you have any thoughts on these I appreciate it.

Also is there any other things I can do to calm down the stomach/diarrhea?

My babesia is on a 7 day cycle and hits me harder on Mon/Tue so I'm anxious to see if there's any change in the severity of it coming up.  I know it's early and if there isn't a change don't give up hope as I can be on this regime for months if not others but some positive movement is welcome whenever it happens.

[JackieCalifornia]

... and one more belated thought:

As I recall, Lyme messes with the body's pH levels (alkaline vs acidic), which makes the body more welcoming to fungal infections of the gut and elsewhere.  My Lyme doc told his patients to take a particular formulation of yeast-based probiotics, on the theory that seeding the gut with 'friendly' yeast will help keep the fungus/yeast under control.

It's a good theory that works for some people, but it turns out that some of us (like me) are sensitive to yeast, which colonized my whole system -- particularly with a bloating of my digestive system, brain fog, and bloodshot eyes (a really nice look).  Yuck.

My doc said he had 'never' seen that happen before, and I believe him, but it happened to me, special person that I am (ha).  It took months of antifungal meds (on top of the anti-Lyme and anti-babesia antibiotics I was taking already) to get things sorted out, and it turned out okay, but what a drag.  

The alternative to yeast-based probiotics (such as the brand name Florastor I had taken) are the more commonly used acidophilus-based anti-yeast meds from the drug store (no prescription needed); just look at the label to see what the active ingredient is to be sure and ask the pharmacist to be sure.  Florastor is made of yeast, while the more usual probiotics are made of acidophilus bacteria.  That's the key.

So .... why am I boring you with all this?  Your statement above, "I'm going to go strict on no yeast/candida/gluten/diary diet while I go through my treatment."  I hear you, and wanted to say to read the labels carefully, to be sure they do not have a fungal component like Florastor does.  If you can't tell from the labels, since they might list only the scientific name of a fungal component, ask the pharmacist if there is any fungus in the product in question.

(Even if you are not ingesting yeast products, however, it's possible to get a systemic fungal infection, due to the Lyme bacteria suppressing your immune system generally, or that's what I recall from my reading several years ago but haven't looked into lately.  I vaguely remember reading a while back that Lyme messes with the body's pH levels (alkaline vs acid), making it more hospitable to Lyme bacteria. Just fwiw.)

When the antibiotics are busy wiping out the bacteria of Lyme and whatever else you've got, it's important to re-seed the gut with 'friendly' bacteria.  If you don't want to use Florastor-type products, then I understand that you can instead take acidophilus *IF* you are careful to take it a couple of hours away from the time you take your antibioics.  

Why?  Because antibiotics will kill the [bacterial] acidophilus if taken too close together, and you need the acidophilus re-seeding your gut every day.  If your doc doesn't have an answer that satisfies, ask a good pharmacist how far apart acidophilus should be taken from antibiotics to ensure there is no conflict.

Whew.  Now go forth, and get well.  :)

[JackieCalifornia]

Glad we can help -- it's a group effort here, because Lyme has so many twists and turns.  After all, if the *docs* can't get it all straight, how can we humble commenters hope to do so??

A few comments:

You say:  "I'm hopeful due to the fact that it was caught early (6 months)" -- yes, early detection is helpful, but Lyme is so sneaky that it's very possible to have a low level Lyme infection for a long time and not realize it till some other health problem arises that lowers your immune system's ability to fight back (then you notice the Lyme symptoms perhaps for the first time).  As you go along, keep note of new or recurring symptoms and report them to your doc, because there is much sneaking around done by the various infections, and it sometimes takes a while for the diagnosis to be fully realized.  If you see a new symptom, be sure to report it to your doc.

You say, "I have 3 specific symptoms (post-nasal drip, sore throat and that flush head feeling thing)."  Just goes to show that everyone is different:  I don't recall having any of those symptoms from Lyme and babesiosis.

You say:  "I had 3 Western Blot tests 2, 3 and 4 months after symptoms and both came back negative from the "traditional" labs Quest and LabCorp.  I then got a full Lyme panel + co-infections and boom that's when it showed up.  Even the CDC/NYS criteria showed positive so I'm a perfect example of how these bugs can literally not show up multiple times but still have it."  Well said, and important information to pass along.  Thank you.

You say:  "I'm going to go strict on no yeast/candida/gluten/diary diet while I go through my treatment."  Be sure you're getting enough calcium in your diet.

You say:  "Doctor wants to see me in 6 weeks even though I run out of meds in 4 so that doesn't seem right."  I would have the same concern.  Rather than wait for 4 or 6 weeks, I would address the issue *now* so that there is no gap in treatment, assuming she is not intending to create one.  It's fair to ask why it's scheduled as it is, and I would do so.  

Whether your doc is really better than the 'just-2-weeks-of-doxy' docs may or may not be true.  If you stop treatment too soon, then starting it again (out of necessity) may make treatment harder all around because of the ability of the bacteria to become resistant.

You say:  "She's 'semi' Lyme Literate and said she studied under Horowitz (whatever that means who knows) and follows ILAD protocol."  Horowitz is a well known Lyme doc -- you can search online for something as simple as 'horowitz lyme' and probably find his bio.  Remember tho that studying under Michaelangelo doesn't automatically make you a great sculptor.  There are no fixed rules on how and how long to treat Lyme and the co-infections:  it's a moving target, given that each of us has a different mix of infections and a different immune system to some extent.

You say:  "Ideally I'd lie a LLMD who treats a good % of her patients with Lyme but they are hard to find and could take months to get an appt."  Start looking now, and when you get to the top of another doc's list in X weeks, then re-evaluate whether you want to jump ship.  Keep your options open.

"She is better than the traditional community who thinks a little Doxy for 14 days will cure Lyme."  Maybe yes, maybe no.  I'd want to hear more about the reason for your prescription meds ending after 4 weeks when you have documented Lyme, and I'd want that conversation to be had *before* you are out of meds and out of time to find a new doc.

Just sayin'.

[RichFly]

Thank you for the great advice esp Jackie.  I'm hopeful due to the fact that it was caught early (6 months), I have 3 specific symptoms (post-nasal drip, sore throat and that flush head feeling thing).  After 3 months of getting knocked on my butt it's fallen into a cycle where every 7 days or so I "crash", and climb out of it for a few days and hit the top of the cycle where I feel the best I will than it repeats.

I had 3 Western Blot tests 2, 3 and 4 months after symptoms and both came back negative from the "traditional" labs Quest and LabCorp.  I then got a full Lyme panel + co-infections and boom that's when it showed up.  Even the CDC/NYS criteria showed positive so I'm a perfect example of how these bugs can literally not show up multiple times but still have it.

I'm going to go strict on no yeast/candida/gluten/diary diet while I go through my treatment.

Doctor wants to see me in 6 weeks even though I run out of meds in 4 so that doesn't seem right.  She's "semi" Lyme Literate and said she studied under Horowitz (whatever that means who knows) and follows ILAD protocol.  Ideally I'd lie a LLMD who treats a good % of her patients with Lyme but they are hard to find and could take months to get an appt.  She is better than the traditional community who thinks a little Doxy for 14 days will cure Lyme.

I'll keep everyone posted on my progress I started day one today wish me luck!

[mojogal]

Sorry for the diagnoses. I want to give you my 2 cents about the diet part. I went undiagnosed for over 25 years so damage was done. Then I took ABX and more damage was done. I thought I could get away with not following a Lyme diet and I was very wrong. Recently I found out I had leaky gut. My only solution was to go sugar free, dairy free and gluten free.

[JackieCalifornia]

PS -- one comment made above ("Get ready to feel worse before you feel better") didn't happen to me.  

Everyone's tolerance is different for meds and for the gunk the dying bacteria are releasing into your system.  I'm a total lightweight with most stuff (like alcohol) but the antibiotics didn't phase me.

When you start the meds, if you feel more than a small bit worse than before the meds, let your doc know so an adjustment can perhaps be made to the meds or the dose.  

It is important that you *not* reduce the dose or frequency of the doses without the doc's specific agreement, because you risk creating antibiotic-resistant bacteria, and then the meds can be wholly ineffective, not only for you for also for others once abx-resistant bacteria start to spread.  

I have heard people say things like, "I only took half the dose the dr said, because I don't want to get dependent on antibiotics", or "I only took the meds every other day instead of every day" for the same reason.  

If you find you are having side effects that you can't tolerate, *call the doc's office* before changing the dose or the frequency of doses.  The doc has to agree, and if you're in bad shape, the doc will find a way to lessen the side effects -- but the *doc* has to be the one to decide that.

Try not to worry -- I am a total lightweight when it comes to meds (I even get a buzz off plain Tylenol), but I had NO problems with the Lyme meds.

Hang in there!  It's worth doing.

[JackieCalifornia]

[part 2 of preceding message]

Someday this will all be sorted out, but until the older docs who first 'discovered' Lyme a few decades ago are retired, they will likely continue to give patients a little doxy and say that any continuing symptoms are not evidence of a persistent Lyme infection, but instead is your immune system over-reacting to a now-gone Lyme infection.  And these docs may not ever get to looking for co-infections the 'Lyme' ticks may also bring and which need different testing and treatment.

To answer your specific question, “How could I get 3 different Western Blot tests all come back negative but IGenex says positive?  Could this be a false positive?"  In my experience and understanding, IGeneX tests are generally more accurate than the Western blot tests, so I would lean toward the IGeneX results.  The nonILADS docs too often trash-talk about IGeneX, but imo they are wrong.  ILADS has a good website with lots of information aimed at MDs and not just patients.
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In summary, here are short answers to your questions:

"1.  How could I get 3 different Western Blot tests all come back negative but IGenex says positive?  Could this be  a false positive?"

I would be more inclined to believe the IGeneX test than the Western blot tests.  The old standard Western blot/ELISA tests measure the activity of your *immune system* producing antibodies against Lyme bacteria, but Lyme has the ability to suppress your immune system, so that the Wblot/ELISA test results can be negative ('no infection') while in reality you can have a serious case of Lyme.  IGeneX Labs has a more precise test which looks in your blood for direct evidence of Lyme bacteria DNA, rather than relying on looking for your (potentially suppressed) immune system.  

"2.  Does the above regimen sound like a good first step considering I've had this for 6 months?"

I would find a Lyme specialist, likely an ILADS member MD, for a second opinion.

"3.  Any other suggestions on improving my body's ability to eradicate this?"

Sleep enough, exercise mildly (simple walking, not running), eat good and healthy foods, and think good thoughts about life returning to normal when you are well.  

Sorry if this is disjointed -- I got interrupted several times, and it's after midnight now so I probably won't be any more coherent at this point anyway.  :)

Let us know how you do and and if you have any questions etc.  Best wishes!  Keep us posted.

[JackieCalifornia]

Ditto bdonahue7's comments.  

When I was ill and looking for a diagnosis, my Lyme doc ran the same or similar IGeneX tests you have had, and both came back positive.  I was then treated with the same meds you name above.  My babesia was treated first.  Then when the 'babs' was wiped out, we moved to other antibiotics to take care of the Lyme.  I am now still well and ridiculously healthy [knock wood] some 6 or 7 years since treatment finished.  

I didn't feel like going dancing as soon as the meds were finished, but that's because the body is just worn out from going through the whole Lyme mess, but gradually over time, I got steadily better.

Eat good food, get enough sleep, be patient with your body:  it's working hard to get you well too.  Mind/body thing. I used to have supportive little chats with my bod about how well we were doing and noting how much improvement we were having.  Sounds silly, but it helped me focus on where my body and I were headed:  to get well again.  By doing that, it also keeps you focused on where you are headed and how much progress you have made.  

I kept a chart on my computer, with columns for the date, what I ate that day ['tuna sandwich, veg soup, iced tea' or whatever], which meds were taken in what dose, how well I slept, and anything out of the ordinary.  I saw my Lyme doc about once a month and would print out my spreadsheet entries since the last appointment and give the spreadsheet to the receptionist when I arrived.  

The doc would review my notes, then call me into his office to talk and make plans and adjustments based on test results and my notes etc.  He really liked having the detailed data, but some docs don't and will say instead, "Just tell me how you've been doing" or something vague.  Lyme can mess with memory and detail, tho, so without my chart, I would have been a complete blank.  If my doc had not wanted to read my detailed data summary, I would have taken with me a fairly short written summary to *read* to the doc.  These are just ideas for you -- everyone and every doc is a bit different.

To answer your specific questions:

"1.  How could I get 3 different Western Blot tests all come back negative but IGenex says positive?  Could this be  a false positive?"

There is a big split in the medical community about Lyme, and one aspect that often comes up is the accusation by so-called mainstream docs that IGeneX testing is invalid because it produces more positive tests than the older Western blot and ELISA tests.  

The mainstream docs then often imply heavily (or just come out and say) that (1) the Lyme docs who use IGeneX tests are hoodwinking their patients into taking more than the old 'standard' treatment of a couple weeks of doxycycline, and (2) after doxy treatment, the patient must then cured no matter how bad s/he still feels.

[The politics of Lyme are ugly, and it's quite personal on the part of the non-ILADS docs.  Why?  I think it's because Lyme is a recently arrived infection in the populace (just a couple of decades old), and the docs who first 'discovered' Lyme are still practicing medicine and are wedded to their initial assessment that Lyme is rare, hard to get, and easy to cure with a couple weeks of doxycycline.]  

Doxy can work, but *only* if given almost immediately after initial infection ... the problem being that many of us don't know when we were infected -- I never saw a tick or had a rash, but I was quite ill for months until I finally found my way to a Lyme/ILADS-type doc (he was my 20th doc on this quest!).  Also, a high percentage (maybe half) of the 'Lyme' ticks also carry other infections other than Lyme that need totally different testing and treatment from Lyme:  doxy often doesn't work against these co-infections, thus the importance of an accurate diagnosis looking beyond Lyme alone.  ('ILADS' is short for International Lyme and Associated Diseases Society, which is a voluntary group for MDs who take a more broad-minded view of diagnosing and treating patients with Lyme.)

The result of all this is that the so-called mainstream docs often claim that ILADS-type docs (who tend to take Lyme more seriously) are a bunch of quacks just soaking their patients for more office visit$ and more med$.  The truth however is quite the opposite, imo and experience.

The most significant difference between the older ELISA/Western blot tests and the more current IGeneX testing is that the older tests look in your blood for antibodies your immune system makes against Lyme bacteria.  That sounds reasonable, but Lyme bacteria have the ability to *suppress your immune system* so that the tests can be negative even if you have a roaring case of Lyme.  In contrast, the IGeneX tests preferred by Lyme specialists do not rely on your immune system reaction, but instead look in your blood for genetic material (DNA) of the Lyme bacteria.  The IGeneX tests are a direct measure (rather than an indirect one) and as a result are more accurate.

Someday this war will all be sorted out, but in the meantime, nonILADS docs continue to take the position that if you are diagnosed with Lyme and treated with the old standard antibiotic doxycycline for a few weeks, any remaining symptoms of Lyme are *not* evidence of a continuing infection, but instead are your immune system over-reacting to the now-dead infection, and if you still feel lousy, that's just too bad.

Non-ILADS docs tend to be quite dismissive of both Lyme docs and antibiotics other than just doxy, but the reason for using meds other than doxy is that fairly soon after a Lyme infection arrives, the Lyme bacteria will create slimy shields in the body called 'bio-films', where the bacteria can party without being detected and then killed by your immune system.  These bio-films can be penetrated by the right antibiotics, to then kill the Lyme bacteria hiding there.

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[bdonahue7]

Sorry for your dx but welcome to the club!
1. I've been told Igenex is more sensitive and checks for more bands. Labcorp runs the elisa first and if you don't score high enough the won't even run the western blot therefore say your negative.
2. Yes your doctor is starting you on two good strong abx's.
3. My advice would be to detox any way you can. Sauna, epsom salt baths, drink lemon water. Get ready to feel worse before you feel better. You will get better but it may take some time. Stay connected on lyme forums and ask questions. Best of luck!