*sigh*

[dolfnlvr]

I thought I finally found an answer.  I was put on Mepron in June and right around the same time I started taking it, I started feeling better---so YIPEE!!!  But then--my Mepron ran out and I had to wait two weeks for refill from Dr because I had to check in and get blood work first.  Well, while I was "off" the Mepron, my cycle hit, and I started feeling awful again--and I thought--uh oh.

Anyway, I ended up back on the Mepron within a week of all that, but spent the whole month of July in MISERY.  Exhausted, dizzy, nauseaus etc etc etc...all the same old stuff. And the mepron wasn't doing a thing.  Add to this that my period (sorry) just would not quit--it was off and on all month.  But I kept up the Mepron anyway--because who knows with all this stuff, right?

Then, the week before my "scheduled" period I started to feel better--almost great actually.  And then I got my period, and so forth.  All has been "regular" and I've felt generally fine so far this month.  

So, I'm back to the old question--is it the Mepron, or the hormones?  Was I off the mepron just long enough to rebound and then took three weeks to come back up or was all the timing just exactly coincidental with my hormonal cycle?

I've had negative everything results.  Negative lyme, negative elisa, negative banding patterns, negative babesia blood work, negative everything.  As far as the blood work goes I am tick bourne disease free and always have been--and now I think I might as well give it up and move onto another tack...

What do you think?

[JackieCalifornia]

Rico has a point -- have your docs checked you for parasites?  There has been a good bit in the news recently about, for example, toxoplasmosis.  Here's a clip from the Mayo Clinic website:

======================================
Symptoms
By Mayo Clinic staff

You probably won't know if you've contracted toxoplasmosis, although some people may develop toxoplasmosis symptoms similar to those of the flu or mononucleosis, such as:

    Body aches
    Swollen lymph nodes
    Headache
    Fever
    Fatigue
    Occasionally, a sore throat

In people with weakened immune systems [could include someone fighting off other infections like ... Lyme?], you're more likely to develop signs and symptoms of severe infection, including:

    Headache
    Confusion
    Poor coordination
    Seizures
    Lung problems
    Blurred vision caused by severe inflammation of your retina (ocular toxoplasmosis)
====================================
I don't know that Lyme docs have this on their mental list of possible coinfections, since it doesn't come from a tick, and it's increasingly odd to me the way docs branch off into areas of medicine and disease specialties that are all related to each other (like 'tickborne infection') and have a hard time making cross-over diagnoses.

Just a thought.  Maybe an infectious disease doc would be worth a visit ... they often scoff at Lyme, but maybe they would be wise to nonLyme infections.

[Ricobord]

I still wonder if you have a parasitic infection and your immune system is creating lots of inflammation. Maybe your LLMD would be willing to try other anti parasite meds to see if you start to feel better again.

So sorry you're struggling with this.  It is so frustrating not to know what is going on and what to do about it.

[mojogal]

Even LLMD don't really have all the answers yet so how are we expected to?
I remember getting the Fibromyalgia dx before anyone ever heard of it, it was like Lyme is now, a dx they give you when they don't know what else to say. I was told those exact words for Lyme by a mainstream TX doctor. Also had the EBV , CFS and mono dx. Along with many others.
Very frustrating. Dr James Schaller sent me one of his books on Bart's and babs. He writes in the book" what I knew about Lyme last month is not what I believe this month" not an exact quote but similar. He is a big researcher and is still learning.

[JackieCalifornia]

Good that you're keeping notes.  My notes were my main contact with reality when I was so sick.  They let me aid my lousy memory and be able to draw some correlations that otherwise would have gone >pfft< into outer space, given the, yes -- lousy memory.  Then before going to the doc for a check-in appointment, I could review the notes, condense them into a short report, write it down, and take it to the appointment.  Survival Techniques in the Land of the Lyme.  Sigh.

It's possible it can take a while for the Mepron to get the upper hand again after the bugs were let off leash to frolic and party.  Don't give up!  Lyme is bad enough, but after the Babesia was kicked, I felt MUCH better -- a huge amount of improvement.  Everyone is different, of course, and the bugs have their own flavors of the month, but hang in there.  

You end by saying 'I just don't know anymore.'  Truly, none of us does.  It's just a journey, and when I fall in the ditch, I gotta figure out yet again how to get back up on the road, whether it's Lyme or work or family or whatever.  Hang on -- !

[dolfnlvr]

I'm not worried that it is Fibromyalgia--mainly because (though I hesitate to "type this out loud") I don't have the muscle aches and pain that fibro is defined by.  CFS is completely possible, as the number ONE issue is the fatigue--but again, CFS has no real "cure" or "cause" per se.  

I'm pretty sure it's not Lyme--at least not on its own.  I've had about $1400 worth of Igenex labs done and all have been "negative."  The only "positive" Lyme test was from a lab called Neuroscience and they do a cytokine test and Lyme protein marker survey.  It came back positive showing very high p100 proteins and very high cytokine levels which according to them was indicative of a lyme infection with chronic inflammation.  Like I've said before though, not a lot of research out there to back that test or the company up as yet, so who knows if it is accurate or not.

The mepron made a dent, I thought--but when I went so far backward in July, and when going back on made NO DIFFERENCE WHAT SO EVER for more than 2+ weeks I started (still) to wonder if indeed Babs was on board.  Then, when the August cycle came and all started to settle back down, I got confused AGAIN.  

One thing that I've noted since I started keeping notes more than 8 months ago is this--I feel best the week before and the week of my period--which is weird, because hormonally, that is when I'm supposed to feel my worst.  I start going back downhill the week of ovulation and the cycle goes around again.  OB/GYN found nothing odd--

Oh to be "normal" for once--

Thanks for the support--again.  I just don't know anymore.

[JackieCalifornia]

About fibromyalgia .... since even the docs admit they don't know what causes it or what it is (it is officially a 'syndrome', meaning a collection of symptoms with no identified cause), I am suspicious that fibro really is Lyme and/or co-infections that have not been tested for properly (and that the tests may not be wholly accurate or sufficiently sensitive).  

Before I accepted a fibro diagnosis, I'd have thoroughly ruled out (by a good LLMD) Lyme and its co-infections to the extent scientifically possible.

And I'd try herbal Lyme treatments, too, before settling on 'fibro.'

[Ricobord]

I can totally relate.  My husband is getting burned out with all the extra responsibility, especially looking after our highly active first grader.  I have even less capacity than you do. I can do light activity, but there's no way I could do kayaking or hiking yet, and I would say that as far back as 2 years ago.  I can still "crash" with short notice and need to take a rest for anywhere from 15 minutes to 2 hours.

Jackie's mention of IGeneX's PCR test is a good one. They say their urine antigen tests has a high accuracy rate when used with antibiotics.  Have you tried that one yet? They include instructions with the test kit.

I have a new friend who has struggled with Chronic fatigue syndrome/Fibromyalgia/Lyme - like symptoms for years.  She went to numerous doctors, none of whom could help. One told her to go home and take a nap. :(  She eventually concluded that she had CFS/ME and that it was triggered by a virus. (She had an ugly onset of cold sores right before.) She went completely sugar and gluten free, took supplements that were anti inflammatory and brain/immune system boosting, and began a gentle exercise program.  It took about a year, but she felt much better. She eats some gluten now, and occasionally has food with sugar in it, but she feels herself deteriorating when she does, and then gets back on the program.  She is not perfectly "well" as she still has some symptoms, like short term memory issues (she keeps lists), but she lives a full and busy life with her family.

I share her story not to discourage you, but rather to say that not everything that looks like Lyme is Lyme. It mimics many things, including some conditions we don't understand, like Fibromyalgia and Chronic Fatigue (Myalgic Encephalitis).  Despite the misdiagnoses for Lyme patients, these are real medical conditions. CFS sometimes goes away. Fibro does not.

I would encourage you to exhaust the possibility of infection first, whether bacteria or parasite. A cure is much more appealing than managing a chronic condition.

[mojogal]

I can totally relate to your frustration. I feel like I am on a constant roller coaster where I will feel positive and a little better only to open my eyes the next day and feel negative and very ill. That alone takes everything out of you.
I am engaged and to be honest, if I were Mike, I would run away from me as fast as I can but yet he is still by my side, not physically right now since he is working out of state, but spiritually. You are lucky though,  I am too sick to work or do much of anything. I honestly don't remember what normal feels like.

[JackieCalifornia]

Up above you comment:  "I would think that a couple or few months into antibiotics for Lyme, you would at least show one Lyme specific antibody.  Have you had a follow up WB IGeneX?"

Why not use the PCR test instead of W blot?

[dolfnlvr]

It is just so frustrating!!!  Really!!!  I love it when I feel better--almost normal, but when I turn the curve and feel bad--I feel really bad and start to worry about the "future."  

I really am trying to be as optimistic and upbeat as possible, but it's tough when every single thing I do seems to yeild no true results.  And, not to be whiney--but while I'm venting--my husband has put up with so much over the past year--there is only so much a marriage can take before it gets strained.  

I'm tired a lot, thus end up in bed early, which means very little Mom and Dad time.  I also hesitate to do highly active things like kayaking and hiking because I usually end up exhausted afterward--but that leaves him alone, bored, and overdrawn on kid duty.  Plus--with all the antibiotics and their associated feminine side effects, the "sponteneity" is nill.  

Sooner or later something will have to give, and I'd rather it be the illness than my life!!!

[mojogal]

When you stop and think about it, there are too many things that can make us sick and it's very overwhelming.

[Ricobord]

You are indeed a puzzling case.  It sounds like you have too many variables to know what your recent experiences really mean. Some cases of Babesia don't respond that well to Mepron, and respond better to Malarone. And in many women, Lyme symptoms get worse with PMS.

I would think that a couple or few months into antibiotics for Lyme, you would at least show one Lyme specific antibody.  Have you had a follow up WB IGeneX?

The LymeMD has a blog post about a woman who suffered quietly with Fibromyalgia-like symptoms for about 20 years. She improved remarkably on Malarone, and he theorized that she had some kind of parasitic infection.  It is hard to remember that we have not yet identified everything out there that can make us sick.

[mojogal]

Having just started Mepron 3 weeks ago, I was told by my LLMD that some people do good on Mepron and Zithromax and some do better on malarone and Zithromax. Due to fatigue I am switching to the malarone. I agree with Jackie that you need to stay on the treatment in order to see if it's babs or hormones. However, it took a friend years for her babs test at igeneX to show positive. I would say its sounds more like Lyme so don't give up!

[JackieCalifornia]

I would stick with the Mepron (are you taking anything else with it, like azithoromycin?  I'd stick with that too) AND ....

-->> Plan ahead so that you do not have to take a break in the treatment again.

Until you have taken the whole course of treatment without a break, there's no way to tell if it was the unscheduled drug holiday or a failure of medication or even possibly a co-infection that did not previously show up on the tests.

If the Mepron seemed to be working, then stick with it.  If you stop, you will never know if it was effective until you stopped taking it and it rebounded, or if it was just a coincidence that you started feeling better.

There may also be undetected co-infections affecting you right now, things that you tested negative for, but may in the future test positive for at some point.  

But first get rid of the babesia.  It's not an open-ended treatment like Lyme -- it's a whole different organism that acts differently from Lyme and can't hide in the body like Lyme does.

(Also note that it's summer, and the ailments seem to rouse themselves to party in the summer, from my amateur observation.)

You may also at some point test positive for Lyme, but the tests are just now showing it now.  Nothing is easy with Lyme and its little friends.....

Hang in there!