Check in for Lyme

[trixiedicksnatch]

In case you guys weren't aware I'm modding this board for the time time being and I wanted to keep the check ins going

Lyme seems to be one of the most wide spread issues so I would like to make sure Lyme peeps feel free to keep checking in.

How are you all holding up?

[panicked]

I'm curious- What were symptoms did everyone have that led to a Lyme dx?

[panicked]

carrotsmakemefat- holy shit dude. You are describing me to a t. I don't have any joint pain, but everything else is right on. I'm Celiac, so I've been attributing everything to lingering symptoms from that, plus IBS, plus stress. I'm making a doctors appt asap

[panicked]

Sept 6, 2014 10:05:27 GMT -5 carrotsmakemefat said:

I posted on ML but my blood results weren't promising. My CD 57 dropped over 10 points. And I have no clue why! My RDW is also lower than normal. I started an additional abx today that's supposed to be a cyst buster.

And I'm feeling pretty alone in this Lyme journey right now. I know it will be ok. What will be will be. But damn. I'd really like to be feeling better by next fall/winter and try to get pregnant. Or at least well enough to consider motherhood

Thank God for my H. Such a great support to me.

I'm so sorry, Carrots. That really sucks. Hopefully your next follow up will be better! We're here for you.

[Deleted]

Well, I've had Lyme for over 3 years now, and went through the whole spectrum of ABX and finally went into remission on ABX. I'm currently in a new flare and and am being retested. I initially got my dx when I got a bee sting on my abdomen which resulted in a bullseye rash about 10cm across. I'd had unexplained migraines/headaches, joint pain, irregular cycles, and fatigue for about 6 months before that.

[keyslover]

My DH has been battling Nuero Lyme for over 10 years. At his worst he was on a PICC for 10 months. He had been symptom and active bacteria free for about 2 years. Now his symptoms are back.

Chronic Lyme sucks.


Eta- hope it's ok I post since I am on the caregiver/support side.

[keyslover]

Sept 18, 2014 15:34:39 GMT -5 carrotsmakemefat said:

Sept 18, 2014 3:45:16 GMT -5 keyslover said:

My DH has been battling Nuero Lyme for over 10 years. At his worst he was on a PICC for 10 months. He had been symptom and active bacteria free for about 2 years. Now his symptoms are back.

Chronic Lyme sucks.


Eta- hope it's ok I post since I am on the caregiver/support side.

I appreciate your input!

When I saw chronic lyme on my last blood results I freaked (note was coupled with my symptoms, plus the fact I got worse on tests). I still am a little freaked but now I am feeling more empowered and want to kick tick ass. I really hope that (if this lasts awhile) I can learn to balance what to burden my H with and what not. I have some twitching. I have horrible brain fog (good and bad days obviously). I'm not near the extreme of what you see in Under Our Skin or anything like that.

Anyway - any tips? We keep lines of communication open and he's very supportive. But I hope that long term we don't have lyme revolve around our lives. It's getting better (ie, not constantly on my mind). But damn, are the bad days just bad. And all I want to do is retreat and not bother my H with this. He gets it if I tell him that. But I want to really keep us solid.

Does any of this make sense?

UOS is the extreme.  DH was never like that, even at rock bottom.  It was the catalyst for us to take treatment seriously though, we didn't want him to EVER get to that point like the movie.  
Keep in mind, I know what you and my husband are going through sucks balls.  I have no clue what it psychically feels like though.  My views are caregiver and we have a right to bitch too  because it totally sucks to be helpless when someone you love is sick and 1) you cannot do anything to really help (at least you feel that way) 2) modern medicine doesn't fix it 3) you want normal

I am the keeper of info- I coordinate supplements, appointments (doc, massage, acupuncture), medicine.  DH has neuro issues so memory and brain fog are big issues, so this keeps us both on track.  
I want to hear what is going on with him, yes every little thing.  I want to hear when new symptoms occur or things change.  I also go to his Lyme appoints.  They were every 3 months and about a 3 hour drive one way.  The doc wants his version of things and also my observations.  
We are going to try to a new local doc and I will still go to the appts.  

Don't keep this all to yourself, you will go crazy.  Talking to someone else that has Lyme and really "gets it" will be helpful too.  With that do not get bogged down with other Lyme people- some can dwell and focus on the wrong things, like being sick.  We focus on the good stuff and live life "normally".  Plans change, we have to be flexible.  It can be frustrating, I will get so excited we have plans and get to do "normal" things, then he feels like crap and we have to cancel.  

I will add more later too