Lyme?

[dolfnlvr]

Okay all, you've probably gotten a few thousand of these posts, but this is all new to me.  It all started on July 29, 2011 at 11:30 a.m.  I had been 100% perky and normal until that day.  Then, I felt nauseaus and was worried that I would have to cancel a lunch meeting.  From there, it has been 2 months of wait, see and be miserable, with new and scary symptoms around every bend.

First was the nausea and fatigue.  Then I had trouble sleeping, felt faint (I have a history of that) while laying in bed and ended up in the ER one night due to probably complete faint while laying down.  Results of that were 100% normal (normal heart, normal bloodwork, normal bp, normal everything).  I noticed though that I couldn't work out anymore without a very heavily pounding heart (not fast just HARD).  Then, I noticed some significant sciatica in my right leg and a sore lower right back, then I realized I was "foggy headed" and having a hard time concentrating.  Most recently I've experienced intense vertigo and nausea accompanied by a headache that is what I would describe as the intensity of a really bad caffeine withdrawal headache.  And I feel like I have a mildly stiff neck on the right side.  MILDLY stiff, like, maybe not really, but it is tender and uncomfy.

SO I've been tested for Lyme with a standard blood test, but haven't heard back.  I've had a complete cardiology workup, all is well.  I've had multiple blood tests all are fine, and I'm scheduled for an MRI in later October (would prefer TODAY at this point...but what'll ya do?)

I'll be honest, I'm getting a bit scared, and thus am bugging the heck out of my general practitioner.  Should I push for more aggressive Lyme's testing?  I live on the Eastern shore of MD (tick country) and I'm an active outdoorsy girl.  I haven't noticed any ticks this year, and I can't remember a rash at all, but man oh man is this conglomeration of symptoms starting to look like I might have missed something!!!

Here's the catch though--
So far, I've not noticed achy joints and haven't had any measurable fever--both of which seem to be standards in the "do you think you have lymes" lists.

So, what do you think???

[JackieCalifornia]

Oh my, you are getting dragged through a wringer.  Your body must be strong to keep up the fight -- that's good!!

About the immune system stopping the manufacture of antibodies:  I have read that the human immune system has been programmed (through the millenia) to assume that after X days, all the invaders have been killed, so the immune system can safely shut down.  That works for most bacterial infections (and Lyme is just that), but Lyme has tricks that allow it to hide from the immune system (creating slimy 'biofilms' where the bacteria can hide from the immune system) and Lyme bacteria also have a very long reproductive cycle, so the immune system has fewer opportunities to kill the bacteria, because they are most susceptible when the Lyme cell wall is disrupted as it splits and reproduces.  The fewer chances the immune system (and meds) have to kill the Lyme bacteria, the heartier and longer-lasting the infection.  That's why Lyme docs treat for months, not weeks, and they test for co-infections in addition to Lyme, and they use various meds to attack the particular bacteria in question.  No one-size-fits-all.

I'm not medically trained, so this is just me spouting off, but out of the 9 docs you saw, the 5 neuros and 3 rheumatologists were very possibly totally clueless about what was going on with you, because neuros and rheumies are among the most ardent Lyme-deniers.  Their specialty areas of medicine take it as an article of faith that Lyme bacteria are just like other bacteria, so a couple weeks of doxy and you're good to go.

Uh, no.  

Lyme specialists (aka LLMDs) know better than that, which is why LLMDs treat for much longer (so as to cover enough cell-wall-splitting reproductive cycles) to totally kill all the Lyme bacteria.  Hence months of treatment instead of days, and including not just the antibiotic (e.g., doxycycline) but also 'cyst-busting' meds to helps the antibiotics reach the bacteria inside the slimy biofilms where they hide.  And doxy sometimes isn't the right med either, but LLMDs know this stuff.

All this is reflects a split in the medical community, and unfortunately docs sometimes forget to keep their thinking caps on after they get out of medical school.  This is why there such animosity between the neurologist/rheumatologists/infectious disease docs on the one hand ('couple weeks of doxy will fix you right up!') versus the LLMDs who understand the need to bust open the cysts and to keep treating for months so as to catch the slowly reproducing Lyme bacteria with their pants down.  (You should pardon the expression.  Ha.)  And the LLMDs know to look for other infections the 'Lyme' ticks carry about half the time.

It took me a lot of docs to get a Lyme diagnosis, and once I had that, I understood what to do:  an old, old friend of mine had Lyme years ago, so I knew it was serious and needed a Lyme specialist.  I took the positive test (which the testing doc said must be in error!) and RAN (okay, hobbled slowly) to a Lyme doc.  He diagnosed me with Lyme and babesia, treated me, and I am still very well indeed, a good 5 years since treatment ended.

Some of the neuro symptoms you have may be helped by taking magnesium supplements (any variety ending in "-ate", such as magnesium citrate, orotate, malate, etc.), because the Lyme bugs use up magnesium (Mg) as they reproduce, leaving us humans deficient.  Mg is necessary for our cells to communicate properly, hence muscle cramps and twitches and aches when the Mg levels are too low.  (Sound like you?)  Joints can also be affected, perhaps because the Lyme bacteria like to hide in areas of low blood flow like cartilage where the immune system doesn't see them.

So I hear you.  Hang on, and let us know how it goes with the doc!  You got this far, you'll make it all the way.  :)  

[Chloe4389]

Thank You! I appreciate you taking the time to write such a long response. I just talked to my LLMD. My blood culture results will take another 6 wks, and he doesn't want to start treatment until he knows those results. I was thinking I could start antibiotics now.....So I am making an appt. with him when those results are "in", instead of talking on the phone, which is usually a short call.
FYI: I saw one rheumatologist that did NOT believe Lyme existed in CALIF! (where I live) Even my primary doesn't believe in "special tests done at a special lab", i.e., IGENEX. These docs who don't have an open mind in the medical field, put all of us through even more pain in not dianosing Lyme,with  increased frustrtion and emotional turmoil. Shame on them.
Also to note, some good news; my metabolic chem panal and CBC are normal. I also wanted to mention that I am allergic to Tetracycline, which is too bad, being the first antibiotic of choice.I drink a supplement every day, which has Mg in it. Thanks for the head's up!
Thank you very much for your responses. If you feel like it, I would like to hear of the symptoms that you had. I am so happy that you are well now.
Thank you for teaching all of us, and for your support.

[JackieCalifornia]

Yeah, I do run on, don't I?  :D

Glad to help -- I've been where you are with this Lyme stuff, so anything I can do to help gives me revenge on the bugz!

I like the sound of your new doc.  I wouldn't worry about tetracycline -- my doc never prescribed it for me when I had Lyme and babesia, so there are other good options.  

The best description I can give of how I felt before I was treated was like having a hangover AND the flu at the same time.  Tired, confused, worn out, achy, couldn't organize putting the trash out.  Everybody is different, partly because our immune systems are different, maybe, but likely due to what assortment of co-infections we get from the ticks.  I think that's one thing that really messes up nonLLMDs:  they expect a steady, unchanging assortment of symptoms in each patient, but don't take into account that maybe half of us have co-infections that confuse the clinical picture.

It is indeed good news that your other tests are in range, so this bodes well.  I don't get what the nonLLMDs have against IGeneX, but they really do hate on the place.  I called IGeneX one day with a question about something non-medical (billing perhaps?  don't remember now) and the lady was SO nice.  They are good people in my book, for all kinds of reasons.

We have a good crew here on this site, so stop in and stay in touch!  If you're up for reading, the book 'Cure Unknown' by Pamela Weintraub is the true story of her family's voyage through the insanity that the medical profession has inflicted on Lyme diagnosis and treatment.  It's in paperback, but if you're as foggy as I was before treatment, it might be a bit much to read now.  Just a thought.

So glad you found a wise doc!  Keep us posted, and come back and see us here.  

[Lauren4Jesus]

Hey Jackie, I hope it's alright for me to invite myself into this conversation. I just took IGENEX test for lyme because I have been severely sick (unable to work go to school etc) I'm 25 and lived in Africa for about three months..came back and that is when all this started its been a year now and docs are kinda clueless. Here are my test results for IGENEX
30 kDA    -
31 kDa ++
34 kDa –
39 kDa IND
41 kDa ++
45 kDa –
On the next section it says
58 +
Scored negative for burgdorferi
Then the confirmation test says
IgM 31 kDa Epitope Test   POSITIVE
So first test inconclusive and second test positive?
The doctors still aren't sure if I have lyme? It is confusing and difficult. Do you have any advise...I don't know what else it could be if not Lyme related?
Thanks for listening! <3

[Ricobord]

Just to add my 2 cents...

I only had IGM bands 18, 31, & 41 (IgG 41 only) and I figured out I'd had a chronic Lyme infection for 6 years at that point. I was also very ill at the time I was tested. I was hospitalized for 3 days just hours after my blood draw.

No "mainstream" doctor would have diagnosed me with Lyme with my results. There's this dogma in the medical world that everyone, regardless of circumstances, will ALWAYS convert from making IgM to IgG antibodies within 30 days of infection.  There's no studies on long term Lyme infections to justify this rigid view, nor is there any accomodation for a suppressed immune system (which Lyme can do over time). I'd been given 2 rounds of prednisone 3+ months before, which could have explained my low antibody levels.

To explain away the IgM positives with IgG negatives in patients who are sick more than a month, they say that the IgM is "unreliable" after a month and should be ignored. I don't understand how a test can be considered good at 28 days and then suddenly produce a false positive three days later.

LLMDs have noticed for years that people with long term, late stage illness frequently have a low IgM response and little to no IgG response (just like me).  Lyme just doesn't play by the "rules" set by our medical "authorities".

If you had all those bands on the IgG, you'd be clearly CDC positive. IgG antibodies were first IgM antibodies. You have multiple antibodies that are HIGHLY indicative of Lyme, a some of which are truly Lyme specific and cannot be explained away. If you'd like to read a more scientific explanation of this, just find look for papers by Tom Grier on Lyme testing.

I'm having trouble understanding why an LLMD would not be sure about your results. I'm wondering if this is an ILADS trained doctor.  I started antibiotics the day my IGeneX results came in. (I have zero doubt that I have some form of Lyme Disease.) My doc says sometimes their sickest patients test completely negative, and sometimes they have to make a clinical diagnosis based on symptoms and history.  

Note:  I'm not a doctor, just a chronic Lyme patient who has done a lot of reading.

2nd note:  A western blot at IGenex is not a "special" test.  A western blot must follow a specific process, although some labs use different test kits than other labs.  Doctors don't understand that they could send 3 samples drawn at the same time to 3 different labs and get 3 different sets of Western Blot results.  What IGeneX does is add in a 2nd "wild" strain to the standard strain (from Shelter Island, NY) to provide better antibody coverage. They also add their own more liberal interpretation, but still show the CDC result.

3rd note: I have done fairly well on the penicillins for my Lyme. They work for some, but not others. They're one of multiple alternatives to the tetracyclines.

[Ricobord]

I wonder if you got a relapsing fever Borrelia in Africa.  It's also possible you were carrying dormant Lyme before you left, and another illness that you acquired allowed it to overwhelm the immune system.

If you got Borreliosis overseas, it's unlikely you'll test positive on a U.S.-based Lyme test.  You'll need a good ILADS LLMD for a proper diagnosis.