I've been in denial and off treatment - bad Lymie

[Hope75]

Ok, so I had a baby and have been in denial and caught up in the whirlwind of having this new person.  In the meantime, I have (see my other post about my baby and Lyme) went thru conflicting opinions on the baby and her possibly getting Lyme from me.  Those opinions were so conflicting from the biggest and best LLMDs, that I stopped my own treatment out of a sort of denial and general feeling of.....is it all real?  I know in my heart of hearts that it is and it was just convenient to feel like I didn't have it for a while. While pregnant, I felt great, which made me forget that I'm a lymie.  My LLMD said I'll relapse 6 weeks after birth.  I did.  He was right.  Now I have ulnar neuropathy, dizziness, anxiety (had horrible post partum depression), burning sensations all over, dizziness, etc.  I just started back on abx this week and that's when the dizziness popped up, this morning.

My question is...do you ever think, what if it's true, that Lyme isn't the problem like all these non-literate docs are saying?  I feel like I'm being disloyal to Lyme land or something....but here I am, sick and questioning things.  I don't want to take abx for the rest of my life, but I was improving on abx prior to the pregnancy.  Did I start back at square one because I got pregnant?  Ugh.  I think I'm in denial a little too because I'm a new mom and the prospect of being a Lymie AND a mom at the same time is daunting, let alone my secret fears that she has it, even though the world's best pediatric Lyme specialist says she doesn't.  Ugh, my head is swirling with concerns and questions.

I don't know who I think I'm fooling.  I had the ticks embedded in my head twenty years ago.  I got really sick in 2006.  I got diagnosed finally by CDC positive Igenex labs, took abx and started getting better.  What is there to question?  Still....I do...why!?!?

[Melissa072]

Hope your feeling better!!!
My results are in and I will get them tomorrow as the Dr is away today.
I know I'm not going to get much sleep tonight, I'm worried about the results no showing anything.
I'm over this rollercoaster, and just want to get off.
I really need to get this sorted so I can get my daughter tested.
I also have tingling all over, especially in my stomach, and in the heat in particular.
It's winter here now so when I get out of a hot shower I'm tingling and buzzing all over.
My feet/calves burn on and off 24/7 I think I am just used of it now.
Elbow and knee pain are lyme symptons!!!
Stay on your meds!!
Look after yourself, chat soon
Melissa

[Hope75]

Thanks so much. It's encouraging to hear that I'm not alone in questioning this diagnosis.  Who wants to be sick?  With my abx, I'm now feeling bad again, perhaps herxing.  I'm also very anxious and stressed out with a new baby, so I don't know if the anxiety is making my symptoms worse or the abx or both?  Who knows.  I have tingling all over - especially in the heat, burning feet/calves, twitches, tinnitus and elbow an knee pain.  Ugh. It's all back right now.  I felt great thru pregnancy.  Not so much now.

[wonko]

Hi Hope,

I can relate because I went through some denial myself and stopped treatment for a time.  When I moved last summer, I actually thought I could leave my illness behind.  It started out that I was just going to stop treatment to make sure that I could physically get through the move and not get stopped by a Herx.  But then once I got here and unpacked, I just didn't want to resume my abx.

For awhile I felt better than I did on treatment, but then I started getting a lot of neuro symptoms.  Scared, I resumed abx, and within days I got slammed with a Herx that left me more sick than I had been in a long time.  Of course, that happened (drum roll, please) on the first day of my new job!  I struggled a lot throughout the fall to muddle my way back to my pre-treatment-pause level of health.  It took until about Christmas.  D'oh!

I think I was hoping that my Lyme/co was gone and that I was only still having symptoms from the abx and not from an actual infection.  I think too there was some self-doubt in there, and I wondered if I had just convinced myself that I was sick or something like that.  I even thought that perhaps it was something environmental making me sick, like a bad building material in my apartment, as I didn't get really sick until around the time of my previous move back in '07.  I'm not sure I regret what I did because I was simply worn thin and couldn't mentally prepare myself for more long-term treatment without some sort of "proof" that it was necessary.

I never saw a tick or a bite or a rash, but I grew up and lived in several deer and tick-laden areas, and I spent a lot of time at woodsy outdoor camps and my parents had a rural cabin.  I "knew" I was sick by '07, but looking back there were other incidents going back much further that could indicate I had this a long time.  I don't like to think I had it for that long, but that possibility helps me to rationalize why I still need more treatment after two and a half years of antibiotics...

I do my best to stay on my meds, but I do take breaks if I start to Herx too badly.  And I try to stay mentally prepared for the "long term" picture of treatment and following up.  But it's tough and I think it's only natural to question along the way.  

Good luck resuming treatment, I hope it goes smoothly.

[Hope75]

Thanks guys, you are the best.  JackieCalifornia, if you ever leave this forum, it will never be the same.  Glad to have you here Carie, not under these circumstances, but nevertheless, I welcome a new "medhelp" friend ;o)  I talk with Melissa072 alot too, so this is the most helpful forum I've been on. There are others, but I find this one to be the most rewarding.  

I started the ABX last night.  I think that's why I'm dizzy today.  

I'm glad to hear I'm not the only one with doubts in the dark, deep recesses of my mind LOL.  I think that is "healthy skepticism".  We are suffering, smart people.  With that, comes scrutiny.  I'm very scientific and biology was my fave subject.  I work in healthcare.  All that combined, I could diagnose probably just about anything, as if I were House or something.  I'm not a doctor, let me make that known, just sayin' I'm a googling machine and I'll read any scientific paper/research and figure it out.  I don't care how technical.  I think that's what fuels skepticism, because I've read so much and nobody knows the answers.  Nobody, I guess, but the man above.  I think we would like to find out we have nothing, but darn those pesky symptoms, they make us remember!  There is something wrong...this isn't normal.  I also don't want to be deemed a hypochondriac, so I might swing too far and ignore my symptoms and not tell anybody for fear of that judgement.  

So, I'll go stay on my meds like a good little Lymie for a while and see how I do.  You guys are right.  

[carrie235]

Hi Hope,

Congrats on your new baby. That is so exciting.  Remember though, that you need to take care of yourself first and foremost so that you can take care of your baby.  

I too have had a postive Igenex test for Lyme, but like you, I still question the DX and if that is really what is wrong with me.  For me, I worry that it's really MS even though numerous doctors have told me that is not what it is.  Like you, I also had a tick embedded in my belly button for most likely days when I was younger.  It wasn't until I had my gallbladder out that my lyme (or as I say, whatever it is) flaired big time.  They say it is common for a major surgery to cause your body to not be able to fight the bacteria and for the lyme to take control.

So, why can't I accept that I have Lyme???  I HAVE NO IDEA!!!!!!!  Ugh  I am on abx and they are helping me.  There is no doubt that I feel better today than I did 3-4 months ago when I started.  I still have bad days though and those are the days that I question whether or not this is really lyme.  Maybe our doubts come because so many doctors don't believe in chronic lyme disease and that 3-4 weeks of abx are the cure?  I have a great LLMD too that told me there is "no doubt" that I have lyme disease, however, I, for some reason, choose to believe that lyme disease isn't real, like the other doctors say.  I think it is because we're scared.  Scared because we are receiving conflicting information and scared because of the way we're feeling.  

Anyhow, I can TOTALLY relate to how you are feeling.  I do believe that you should get back on the ABX ASAP and don't mess around with it.  

Keep us updated!

Carie

[JackieCalifornia]

Hope,

I think you are thoughtful, honest, and careful.  I worry about people who *don't* ask questions and keep asking them, because circumstances change, and so should game plans of which way to go.

It's natural when pregnant to feel fabulous -- my life was coming apart at the seams when I was pregnant, big problems at work, big problems at home, but I was Little Susie Sunshine -- I could have starred in a Shirley Temple movie, skipping and singing.  It's Mama Nature's way to take care of us, by making the 'happy' hormones flow, so that we face the prospect of pregnancy and motherhood with joy instead of freaking out, so that we hang in there taking care of the little one when it would be so much more fun to go shopping.  So enjoy the happy hormones, but know that they are now wearing off.  That's normal too.  So crashing into reality re Lyme is simply where you are.  You'll deal with that too.  (I know you know all this, but just repeating it for reinforcement.)

The good news is that the little one is Lyme-free.  Now it's time to go back to getting YOU better.  (Post-partum hormones + Lyme = misery.)

I also question my diagnoses (current and past), because the science is far from perfect.  It's a question of whether to treat now.  Because you are feeling so lousy, I'd be inclined to go back on the meds; being off of them doesn't seem to be working, and with a new baby, you need all the peace of mind (physically and mentally) you can get.

I don't think antibiotics are required or advisable forever, and if abx aren't working, there are alternatives like herbal meds and edgier things like Rife and Marshall.  But you aren't there yet.  You were responding to meds, so I'd go that way again.

Partly you're going through hormonal withdrawal, and partly it's the bugz.  Be kind to yourself, lay a game plan, and if it doesn't work, you can change it.  Hang in there, kiddo.  You're doing fine -- you're continuing to think and question, and THAT is the most important thing.