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]

It was just a cautionary comment, since I don't know you and don't know your personality and approaches.  Sorry you were offended.  Hope all goes well.

[Chloe4389]

It was my doc who reported my case to the health dept. I have no intension of "telling them off". It will be a nurse to nurse professional conversation.I'm not an angry person, and would not conduct myself, as telling anyone off. She/He will have a form in front of them, and will ask questions. It is an opportunity to educate. That's how I look at it. It will be years until Lyme is recongnized for what it is, and the numbers of people who have it.As it takes a community to "raise a child", it will take "the community", people educating, speaking, about Lyme and it's incidence to be recognized for what it is.
I have no coinfections.

[JackieCalifornia]

Wow!!!  I'd say 'congratulations', but ... that isn't exactly the right thing ... but good for you for not giving up till you got answers!  I was relieved when I finally got a name to put to my misery, because then (like you now), I had a path and a goal.  YOU GO!  Bravo!!

I felt the same way: 'At least I finally know, for sure, what I have, and what I am fighting.'

Are there also co-infections in the mix along with the Lyme?

----------------------------------------------
About the County Health Dept people, don't get too excited yet about enlightening them ... however much they (as individuals) may agree with you, they are stuck with policies set by their employer/health dept, whether they personally agree with those policies or not.

In addition, some local and state medical boards may try to punish a doc who diagnoses Lyme and co-infections in the ILADS way, and could cause serious trouble for your Lyme doc by reporting him to the state medical board for exceeding diagnostic and treatment 'guidelines' for diagnosing and treating Lyme and co-infections.  (That's why we, on this website, do not post the names of docs here in public, even if they are well known in the field -- if we name some of them, it will seem okay to name all of them in public, but that way lies trouble.)  Till all this is sorted out in the coming years, Lyme will continue to spread, and we need our docs helping us, no matter how much we want to tell off the medical establishment.

Some states (like California, where I am), MDs have, by law, 'freedom of conscience' about diagnosing and treating their patients.  In other states, I understand that the medical boards have the ability to crack down on docs who don't follow the party line, which in Lyme means treating for more than a few weeks with only doxycycline.  States like that can bring the doc up on charges and potentially revoke the doc's license to practice medicine.  

(To keep from confusing people who come to this site, we have an unofficial rules to NOT name LLMDs in public here, because the whole confidentiality thing is very confusing and different from state to state and doc to doc.  Better safe [and silent] than sorry.)

So please be cautious about telling off the county health department people.  You could (and I would) ask my doc if it's okay to give the health dept a piece of your mind, or if you should keep quiet.  If the doc says it's not a good idea to tell them off, then I would keep quiet, and believe me, I'm famous for mouthing off about stuff I find wrong and unjust.  

Someday this will all be sorted out, but in the mean time, we the patients have the responsibility to each other and to our docs (1) to protect our ability to find proper diagnosis and treatment and (2) to preserve the docs' ability to treat as they see fit.  

To quote you:  "At least I finally know, for sure, what I have, and what I am fighting."

YOU GO!!!  Hurrah!!!  You made my day.  :)  

[Chloe4389]

Hi Jackie, thought I would let you know that my doc called me tonight; Advanced Lab had called him today; blood culture test POSITIVE.(with photos of the petri dish with my blood/bacteria and the Control petri dish.)
I have appt with him next Mon. He will start me on 2 oral antibiotics and may switch to injectibles at some point. I will be treated for at least 2 yrs., or longer. It's a wait and see kind of game, which you are very familiar with.
My doc has reported me/my case to my County Health Dept. I look forward to hearing from them, as I have a lot to say and "teach".... That the test that is universally used to test for Lyme is woefully inadequate and insensive; I have had that test 7 times in 12 years and tested negative.At least I finally know, for sure, what I have, and what I am fighting.

[JackieCalifornia]

We'll be here!  Fingers crossed, and all good wishes.  

[Chloe4389]

OH NO! I'm no smash hit....I get nervous too, when seeing the doc...nice guy, but still some nervousness.
I"m thinking my blood culture will be negative, don't know why.
It's the 5 bands in IGM that show I have it.
I'll let you know re the blood culture test.

[JackieCalifornia]

Sorry to have repeated -- these threads get long, and I don't always go back to the top and re-read.  :)  You are more organized than I am.  

I was always nervous when I went to see my doc -- wanted to be sure to get all the data collected and communicated well -- like opening night on Broadway.  You'll be a smash hit, and we'll be waiting to hear back!  

[Chloe4389]

I know you communicate with a lot of people! All your recommendations have been done, by me, and are above in this post.
Yes, I already gave my doc a huge list of symps, on my first visit.
My W. Blot,Co-Infections,  PCR results are above. And I already have another list of questions typed up for my doc, when I go in to get the blood culture results.
Thanks!

[JackieCalifornia]

Be sure to take a written list of your symptoms when you see the doc.  Things that seem unrelated may tell a different story to the doc, like the insomnia you mention (magnesium helps sleep too).  I used to start my list a week before each doc's appointment, so that I was sure to note things that didn't happen every day or happened when I was not near my list and then forgot to write down.  Make the doc earn his money.  :)  Doc needs the full picture, and it's easy for the patient to overlook symptoms that feel like unimportant background noise.

When you get your test results back, do let us know what the test was, which lab ran it, and what the results are.  The Western blot and ELISA tests are the golden oldies and do have value if they show a positive, but are notorious for failing to find true infections.  Thus the need also for a PCR test (from IGeneX labs), which doesn't rely on the immune system reaction as ELISA/Wblot do.  LLMDs are the ones likely to order a PCR test and not stop at Wblot/ELISA.  Hang in there!

[Chloe4389]

I take a mag supplement. But thanks for that info. I read a lot, but it is helpful hearing from someone who has been through it.
I think part of my anxiety is knowing that I have had Lyme for at least 12 yrs, hence the perceived difficulty in treating it.
I have insomnia, which I'm presuming is a part of Lyme. Could be the Big M as well. Perhaps a combination.
FYI: I wrote an email to the lab asking how long it takes to generate a report once culture is done. Same day Fax. So just wrote again explaining the dates (blood draw, test start date/end date, etc) I know one has to be an advocate for themselves.

[JackieCalifornia]

Something to remember as you go through this is that Lyme messes with the endocrine system, which controls much of one's mood.  Anxiety etc. are normal in any one ill, and Lyme can double down on that aspect.  I think I mentioned taking magnesium supplements -- they are very helpful in modulating mood that way.  Lyme, she is tricky.

There is much the docs still don't know about Lyme+, so keeping an open mind as you are is good for resilience.  You go!  

[Chloe4389]

Thank you. I appreciate you caring, and explaining.
I don't have any of the coinfections, so that is good.
Sometimes,  I wonder if I will ever feel better. Hearing the good outcomes is helpful, but I know of people who never get much better and wonder why~perhaps not seeing the "right" doc (llmd) or not on the right meds, or not being tested for coinfections. Who knows? I am generally a positive person, and it is a good thing, cause it ain't easy, as you know.
So thanks, really.

[JackieCalifornia]

Sure, ask away!  If I don't want to answer something specific, I won't.  :)

I had Lyme and also babesiosis, which is an infection similar to malaria and often carried by the 'Lyme' ticks (along with Lyme bacteria).  I was sick for about a year before I (finally!) got a diagnosis from the 20th doc I saw -- the rest didn't know what it was I had, but most of them were not willing to say they didn't know.  One jerk thought I needed a shrink because my kid was leaving home for college, so I must be sad and looking for sympathy, and I wasn't really sick.  Riiiight.

Lyme can manifest in different ways in different people.  Some have more muscle-and-joint symptoms of aching and soreness.  Others have what patients sometimes call 'brain fog' -- not able to think clearly or remember well.  I had some of both symptoms, and it sounds like you might too.  (I described it at the time as 'a combination of the flu and a hangover', but it's different for everyone.)

Your strength and clarity will return (though perhaps more slowly than you would like) as soon as you are properly diagnosed and treated.  Lyme treatment often (even usually) takes months, not weeks, unless it is treated almost immediately after infection.  When the Lyme bacteria split to reproduce, the human immune system has its best chance to kill the bacteria, but at least two things get in the way of a fast kill:  

   -- Lyme bacteria are able to create and hide in slimy shields (called biofilms) created in the body by Lyme, where the immune system and many antibiotics cannot reach to kill the bacteria; and

   -- Lyme have have a very slow reproductive cycle, and it is when the cell wall is split in reproduction that the human immune system and medications can most effectively kill the bacteria.  

In addition, if you have one or more 'co-infections' in addition to Lyme, those often require different medication than Lyme, so that adds on time to the entire treatment plan.  There's no way around it, so if you have Lyme, just take care of yourself and know that your body will gradually get better with treatment and beyond.  Think of it like a really bad case of flu, where you get through the illness, but still need a while to really get your energy back.  Same concept.  You will be back to walking and hiking and shopping, and you will know when you're ready and how much you can take.  Don't overdo, and you'll heal faster.

Eat well, sleep as much as you need, and know that your body is not fighting you, it's fighting *for* you.  :)

Let us know how we can help.  We've all been where you are.

[Chloe4389]

Thanks. May I ask, how long were you ill, prior to starting tx?
How long after starting antiotics, did you feel better? My main prob, besides neuro sensations, is weakness/fatigue/exhaustion. I'm looking forward to going somewhere....walking on a hike or even in a store!

[JackieCalifornia]

Sorry about the cancelled appointment.  I know I used to get all geared up for them, eager to hear what the latest test results were and what we were up to next, to squash the little beasts.  Some of the tests take time to perform, I think, because they are not quickie tests like for strep.  Not to worry.  

If it helps, I had *zero* problems on the antibiotics, and I'm sensitive to everything, it seems.  I gradually felt better over time as treatment progressed.  (Right now I'm eating a banana with unsweetened chocolate powder sprinkled over it, and I am getting a buzz.  So yeah, I'm sensitive to EVERYthing!)  

If you're concerned about Herxing, it might not be as bad as it can sound.  I never felt worse on the antibiotics than I felt before treatment began.

(For those reading this who don't know the term, a "Herxheimer reaction" is what happens when antibiotics kill off the bacteria, thus releasing into your system toxins and whatever trash the Lyme bacteria have inside them.  Some people are more sensitive to the bacterial die-off and feel lousy for a day or so as the immune system takes out the trash ... errr, dead and dying bacteria.  In most people, so I read, Herxing is feeling just a bit worse than normal, and it goes away in a day or so.  As the antibiotics kill off more and more bacteria over time, there are fewer to kill, and the Herx reactions, if any, taper off accordingly.  If a Herx seems particularly intolerable, call the doc for advice rather than just stopping the meds.)

Be not afraid, as a kindly man once said.  You're on your way -- and do keep in touch.  You go!

[Chloe4389]

Hi, just wanted you to know that my appt with LLMD is cancelled for today. While the 8 week Blood Culture is finished as of last Friday, the results will not re read and sent via FAX until  Oct. 11.My appt is for Oct 13.
I presume the lab is very busy.  Disappointing, as, while I feel some trepidation re starting mega antibiotics,
I want to start treatment, feel better, and on a positive note, get my life back.I'll keep you updated re the result, if you would like me to.

[Chloe4389]

Have been reading Tom Grier's site.Tthanks for recommending.

[JackieCalifornia]

There used to be a group called

California Lyme Disease Association (CALDA)

but they have apparently changed their name to:

lymedisease   [dot]   org

"Since 1989, LymeDisease.org (formerly CALDA) has been revolutionizing the Lyme disease arena in public policy, advocacy, and science. Our grassroots ..."  You might find some leads there to docs closer to you.

[JackieCalifornia]

Just sent you a private message (PM) through this system about finding an LLMD.  If you can't find the PM, look at the top of this page where there is a blue bar, one saying 'My Medhelp'.  Click that, and you'll find another place to click that says 'my messages' or something similar.

What's worse:  having Lyme forever or driving a distance to get well?  And there have to be other docs not terribly far from you.  Once diagnosed, my doc appointments were only once a month.  The time spent driving is nothing compared to being well again.

[Chloe4389]

My LLMD is the only one for hundreds of miles.
I don't get why he is not treating me at this point with pos IGM bands. Phone calls are very short. He's busy for sure.I called twice in 2 days, and you know the answers to those calls.
Yes, my husband and I both, are on-line, reading etc. Last fall, when my brain wasn't foggy, I read Richard Horowitz, M.D., "Why Can't I Get Better? Solving the mystery of Lyme and Chronic Disease".That book set me on the path to looking for a LLMD. I really don't get why he isn't starting antibiotics now. Perhaps to re-do another test prior to prescribing them? I just don't know.

[JackieCalifornia]

I don't know whether the treatment would differ significantly whether it's a recent or older infection.  A really recent infection sometimes responds to doxycycline, before the Lyme create save havens for themselves in biofilms, but there is no precise way to know whether that has happened -- and sometimes there are old Lyme infections that are encysted and you can then get a new infection.  In other words, there's no bright-line to know what stage your Lyme infection is at -- at least as far as I know.

This is a long way of saying I don't get what your doc is doing.  There is no test for a doc to join ILADS that I know of:  pay your dues, send in your name, and you're in.  There is a common expectation among patients that there ARE standards that ILADS member docs are held to, but I have never found any evidence that it is true -- it's like joining the auto club:  they assume you know how to drive, and they don't require a road test to be sure.

Lyme is still a developing and conflicted area of medicine, so if the doc ILADS gave you the name of isn't paying attention or doesn't seem right somehow, then I'd start looking for a different doc.  Lyme requires a great deal of vigilance from patients, at a time when we are least likely to be able to do the hard thinking -- but that's where the field is:  in disarray.

Things will change when Lyme is eventually figured out completely, but till then, be proactive to protect yourself.  Enlist a friend or relative who is keen to figure out and manage situations like this if you aren't up to it.  I know when I was first diagnosed, I was in pretty bad shape, so I feel for you.

Be pro-active.

[Chloe4389]

Thank you for your 2 cents, I really appreciate it. I don't know why my doc hasn't started me on antibiotics. That is why I called him yesterday, asking if my treatment is dependent on the results of the blood culture. He said yes. I am presuming that he is trying to figure out if I have an "active" case or "late/post" case of Lyme. I'm wondering if the type of antibiotic and dose would be different. I have an appt with him end of Sept.
I am feeling quite poor, and was hoping to start treatment.
ILADS recommended this doc to me, and said he has been a member for many years.
I will be looking up Tom Grier today, thanks. I am looking for info on LATE LYME or POST LYME. I know that I have become more ill, the past 3 yrs or so, and that worsening of symptoms has gotten worse again, the last 6 months. I'm an optimistic person, but wonder if I will ever feel even close to "normal" again. I'm sure you understand that feeling.
Thanks again for your input.

[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.

[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.