Could use some positive thoughts (LO is fine!)

[seerealsky]

Creepy internet hugs along with our thoughts and prayers that your treatments go well and that you can soon be on the mend.

[birch113]

Apr 8, 2015 18:06:40 GMT -5 userdeleted said:

Apr 8, 2015 13:33:31 GMT -5 birch113 said:

(((Hugs))) I had a severe case of Lyme when I was 12. Like you, I went to every specialist under the sun until they ran the Western Blot. I missed 6 months of school, but luckily the long term IM injection treatment took.

Has your dr ever prescribed a low dose antidepressant to help with the pain?

I can't imagine dealing with that as a mom. I'm so sorry. You've got my T&Ps.

I'm so sorry you went through that at such a hard age! I'm really glad you got better, though.

He hasn't - I'll ask about it. Mostly I manage the pain by soaking in my tub a lot a lot a lot. H has been great about sending me off for soaks when he sees that I'm in rough shape. Lately LO has gone to bed earlier, so I can do it without shifting all the responsibility onto him. I also used to cover myself in Icy Hot before I got pg. I forgot about that...will bust it back out!

I'm so glad your H has been helping so that you can get some relief. Definitely ask about the antidepressant. My parents were hesitant to consent, but when hefty antibiotics still weren't doing it, they agreed. I can't tell you how much it helped many of my more neurological symptoms, but the joint pain and headaches specifically. I don't know that it's common practice to prescribe for Lyme, but hopefully your dr is open to less conventional ideas. So many (((hugs))) for you.

[userdeleted]

I really non-creepy love you guys. Thank you. H and I are on our way to DC. My mom has LO and I am breathing deep breaths.

[kathytav]

So sorry that you are going through this. Sending you wishes for strength and good health!

[ganmag]

Sending happy thoughts your way!

[raechay]

many well wishes for you. can I ask what they plan to use to treat you this go round?

eta: I too had c diff, mine was december of 2013. I am now slightly terrified of both antibiotics as well as my c diff patients, and really just being at my job in general (particularly when pumping. I had the lovely experience of being told on one of the floors that I float to that I must pump in the employee bathroom). I really feel for you for the fact that you're facing more abx.

[userdeleted]

Apr 9, 2015 20:41:58 GMT -5 @txaggie08 said:

userdeleted I hope you're doing ok today!

Thank you! I was wiped out yesterday (emotionally and physically), but am feeling much better today on both fronts.

It's a good thing when your doctor says they're excited because they know they can help you. They're being very careful to add one thing at a time, and apparently I won't even start antibiotics for 4 to 6 weeks. They're trying to stabilize my sleep first, and will pre-load with probiotics and saccharomyces to help prevent a recurrence of the c. diff.

raechay - I'm sorry about your bout with c. diff. It's awful, and I completely understand your fear. Initially they switched me to IV Rocephin with oral vanco (for the c. diff.) I've also had to take Bactrim for a uti since then while I was still pregnant. I kind of freaked on them when they told me I had to take another antibiotic, too.

I don't know yet what cocktail they'll put me on. I have a colorful hx of reactions (urticaria and angioedema) to several antibiotics, so she's going to look at all of it and put a plan together. Basically, we're all going into it knowing I might develop c. diff again and might wind up with another PICC. If that happens, though, H will probably have to go out on FMLA to help me with LO, so we're really hoping not!!

She's also prescribed me an epi pen for when I do restart the abx. Ugh.

Edit for words

[userdeleted]

Apr 8, 2015 19:19:42 GMT -5 kboyet said:

I'm sorry you are going through this and really hope they come up with a treatment that works for you.

This is silly but Lyme disease is something I've been hearing about more and more with celebs like Avril Lavigne and Yolanda Foster speaking out about it. Hopefully the more well known it becomes the more research is done.

Many T&Ps coming your way.

I meant to say...I don't think it's silly. I agree! The exposure from people who are widely known can really help.

It's funny, but there's a short documentary out there about a professional and Olympic skier who has struggled with Lyme (Angeli Vanlannen) that helped me in a strange way. Her story helped me overcome a difficult impasse with my mom, who is a classic denier when something is hard to accept. It didn't matter how many doctors and tests confirmed this wasn't all in my head, she couldn't deal with it, and her resistance made things much, much harder during an already awful time. I sent her a link to Angeli's documentary and begged her to watch it, and it was like a switch flipped for her. She's been much more supportive since then, and often asks me if I've heard anything about how Angeli is doing. I don't fully understand it, but I'll take it!

[raechay]

Apr 10, 2015 8:27:53 GMT -5 userdeleted said:

Apr 9, 2015 20:41:58 GMT -5 @txaggie08 said:

raechay - I'm sorry about your bout with c. diff. It's awful, and I completely understand your fear. Initially they switched me to IV Rocephin with oral vanco (for the c. diff.) I've also had to take Bactrim for a uti since then while I was still pregnant. I kind of freaked on them when they told me I had to take another antibiotic, too.

I don't know yet what cocktail they'll put me on. I have a colorful hx of reactions (urticaria and angioedema) to several antibiotics, so she's going to look at all of it and put a plan together. Basically, we're all going into it knowing I might develop c. diff again and might wind up with another PICC. If that happens, though, H will probably have to go out on FMLA to help me with LO, so we're really hoping not!!

She's also prescribed me an epi pen for when I do restart the abx. Ugh.

Edit for words

I have a list somewhere of antibiotics that are in order of likelihood to cause recurrence of c. diff. I will post it here (mind you I have no sources on them, I found them online and then just copy-pasted them to my phone's notebook). But they have helped me this past year when talking (read: arguing) with my doctors/OBs. I too had a UTI and they wanted to prescribe kelfex, I said no and made them culture it for sensitivity and told them I would take penicillin....and it did the trick

I also had GBS and had to get IV abx for L&D, and again insisted on the IV pcn and everyone turned out great (well except for my poor veins, they had to change IV sites 3 times. Pcn is a bitch on veins...but that is another story as I had to stay in L&D 5 days on abx for listeriosis).

I really hope for you guys that you can avoid a PICC and a leave for you and your H. I read up on that Angeli girl yesterday, and was pleased to see that she is now symptom free (though her blog didn't state whether or not she was still on treatment). That is just so incredibly hard on your body, in so many ways. I'm glad you're taking the s. boulardii, I credit that and b. infantis (as well as the most potent/expensive [sadly] blend of probiotics I could find at the health food market) for having kicked my c. diff in one go-round with just oral flagyl. I still either eat yogurt or take a probiotic daily, and I probably always will. 

[raechay]

Here is my list.
Which antibiotics cause C. difficile?

Although the antibiotic clindamycin (Cleocin) has been widely recognized as causing C. difficile colitis, many commonly prescribed antibiotics also cause colitis. Examples of antibiotics that frequently cause C. difficile colitis include:
ampicillin, amoxicillin, and cephalosporins (such as cephalexin [Keflex]).

Antibiotics that occasionally cause C. difficile colitis include:

penicillin, erythromycin, trimethoprim (Primsol), and quinolones such as ciprofloxacin (Cipro).

Antibiotics that rarely if ever cause C. difficile colitis include:

tetracycline,
metronidazole (Flagyl),
vancomycin (Vancocin),
and aminoglycosides (such as gentamicin [Garamycin]).
-----------------------------
LIKELY TO CAUSE C. DIFFICILE:
Clindamycin
Keflex
Ceftin
Ceclor
All other cephalosporins
Amoxicillin
Augmentin

MIDDLE OF THE ROAD:
Cipro
Levoflex (also Levaquin)
Tequin
Avelox
Bactrim
Erythromycin
Biaxin
Zithromax

SAFE TO TAKE:
Macrodantin (Macrobid)
Sulfa
Aminoglycoside
Flagyl (metronidiazole)
Oral and IV Vancomycin

[userdeleted]

Apr 11, 2015 14:54:12 GMT -5 raechay said:

Apr 10, 2015 8:27:53 GMT -5 userdeleted said:

raechay - I'm sorry about your bout with c. diff. It's awful, and I completely understand your fear. Initially they switched me to IV Rocephin with oral vanco (for the c. diff.) I've also had to take Bactrim for a uti since then while I was still pregnant. I kind of freaked on them when they told me I had to take another antibiotic, too.

I don't know yet what cocktail they'll put me on. I have a colorful hx of reactions (urticaria and angioedema) to several antibiotics, so she's going to look at all of it and put a plan together. Basically, we're all going into it knowing I might develop c. diff again and might wind up with another PICC. If that happens, though, H will probably have to go out on FMLA to help me with LO, so we're really hoping not!!

She's also prescribed me an epi pen for when I do restart the abx. Ugh.

Edit for words

I have a list somewhere of antibiotics that are in order of likelihood to cause recurrence of c. diff. I will post it here (mind you I have no sources on them, I found them online and then just copy-pasted them to my phone's notebook). But they have helped me this past year when talking (read: arguing) with my doctors/OBs. I too had a UTI and they wanted to prescribe kelfex, I said no and made them culture it for sensitivity and told them I would take penicillin....and it did the trick

I also had GBS and had to get IV abx for L&D, and again insisted on the IV pcn and everyone turned out great (well except for my poor veins, they had to change IV sites 3 times. Pcn is a bitch on veins...but that is another story as I had to stay in L&D 5 days on abx for listeriosis).

I really hope for you guys that you can avoid a PICC and a leave for you and your H. I read up on that Angeli girl yesterday, and was pleased to see that she is now symptom free (though her blog didn't state whether or not she was still on treatment). That is just so incredibly hard on your body, in so many ways. I'm glad you're taking the s. boulardii, I credit that and b. infantis (as well as the most potent/expensive [sadly] blend of probiotics I could find at the health food market) for having kicked my c. diff in one go-round with just oral flagyl. I still either eat yogurt or take a probiotic daily, and I probably always will. 

Thank you so much for this, and for the list, raechay. I still take probiotics and eat yogurt/drink kefir daily, too. Once you've been down that road, you get a new perspective on  antibiotics and gut flora, for sure. I don't blame you for requesting the penicillin, though the 3 IVs and the 5 days for listeriosis sound rough! Was the listeria something you picked up earlier in your pregnancy or something you came down with right at the end? You poor thing! I'm glad you and your LO are okay!

Angeli's story gives me hope, too. She had a tough road, but she got to a good place with it. 

[raechay]

I got some of the bad ice cream - I ate it on a Monday and started vomiting that wednesday, which turned into intractable vomiting and active labor Thursday (Christmas it so happened). Then gave birth the day after, which luckily was my due date

[userdeleted]

Apr 13, 2015 15:33:27 GMT -5 raechay said:

I got some of the bad ice cream - I ate it on a Monday and started vomiting that wednesday, which turned into intractable vomiting and active labor Thursday (Christmas it so happened). Then gave birth the day after, which luckily was my due date

Oh geez...Merry Christmas. I'm glad it was right at your due date, at least. Ouch.

[userdeleted]

I have to take LO in for a blood draw to test him for Lyme tomorrow. He'll also need to be tested for Bartonella, but each test requires too much blood to do them both at once, so they'll have to draw them separately. I'm stressing out enough about them hurting him that I dreamed about it last night.

I hate that he has to go through this because of me. His doctor commented that his veins might be hard to access because he's so chunky. Thanks for that, doc. And of course I'm worried about the results.

I know I'm going to have to toughen up about him enduring pain eventually, and I handle things like his teething just fine, but this feels so different. It's not the norm, and it's external. I don't know...just rambling really. And hoping they access his vein quickly and easily, and get enough blood (10cc) from the first stick.

(Edit: And hoping so much that the tests are both negative. I can't even go there yet...)

[nannygoat]

so sorry. I hope it goes smoothly and everything looks fine. I can relate to feeling horrible that your LO has to get test that they normally wouldn't have to get because of you... Not fun. I'll be thinking of you two!

[userdeleted]

I'm sorry you know the feeling nannygoat. :/

[jesster88]

userdeleted praying for your LO and that the results come back negative

[chicorojo]

userdeleted praying for you guys! I really need to sit down and research Lyme disease more. Dh has an aunt who has Lyme disease but was misdiagnosed years ago with MS.

[userdeleted]

Apr 26, 2015 14:29:32 GMT -5 chicorojo said:

userdeleted praying for you guys! I really need to sit down and research Lyme disease more. Dh has an aunt who has Lyme disease but was misdiagnosed years ago with MS.

It's a very common misdiagnosis, as many of the symptoms are the same. It was my doctor's first thought as well. I hope she's doing okay.





Thank you all for the good thoughts and prayers. You're all the best.

[bookworm87]

userdeleted Hope your (not so) little guy's tests come back negative! He's such an adorable chunker! When do you get the results??? We all have our fingers crossed for you!

[userdeleted]

Thanks again for all the good thoughts. Unfortunately, they weren't able to get the blood on W yesterday. He screamed bloody murder and turned tomato-red when they put the tourniquet on, which they had to do 3 times. She couldn't feel the vein well, and I wouldn't allow a blind stick. We'll try again in a few weeks. He's starting to get a little leaner as he becomes more active, so I'm hoping they'll be able to feel it better next time.

Thankfully, he recovered quickly when they stopped - I think I was ultimately more traumatized than he was.

The phlebotomist had a horrifically terrible bedside manner. Bad enough that I plan to call the office to ask if there's another for next time. She was seriously talking about how blood draws like ours ruin her day and how she regretted ever having children herself because they're not cute when they're older. WTactualF???

[happyfeet9]

userdeleted, Glad LO was able to bounce back quickly but definitely speak with someone about that phlebotomist. Hope it goes better next time!

[userdeleted]

Apr 28, 2015 9:09:07 GMT -5 @txaggie08 said:

userdeleted What the heck? Those types of comments definitely deserve a phone call!

I'm sorry you weren't able to do the blood draw yesterday. I hope he doesn't get as worked up next time.

Yeah, she was pretty inappropriate. Especially when it was obvious I was very upset about the appointment. I was tearing up as soon as we walked into the room. She was just gruff and harsh all around. And her handling of LO was completely lacking in softness or empathy. DH and I kept exchanging disbelieving looks. Ick.

And thanks - I do, too!

[jesster88]

Apr 28, 2015 9:09:07 GMT -5 @txaggie08 said:

userdeleted What the heck? Those types of comments definitely deserve a phone call!

I'm sorry you weren't able to do the blood draw yesterday. I hope he doesn't get as worked up next time.

Exactly this.

[userdeleted]

^Compassion. Yes, that's the word I was looking for. Absolutely none.

She offered to do heel sticks, but needed 8cc of blood - it would have taken many, and just torn up his feet. No effing way.

[nannygoat]

Wow, userdeleted! I can't believe someone in her position would say something like that! Uh....lady! Maybe you need a different job!

I hope the new phlebotomist can find a good vein next time. I definitely wouldn't want them to do heel sticks for that much blood. At this point I know I'd just want to get it over with! So sorry you have to deal with this.