Need some advice

[mschmidt]

Hi everyone.  I'm having a HORRIBLE week with my iv's, and I need some advice, and support.  I've been using home healthcare since March, and it hasn't been a great experience for me.  It started out horrendous, and I finally got a nurse I like(after the first 2 that I dreaded), and have been reasonably happy…until the last 4 months.  I love her dearly but, my veins are infiltrating beyond belief.  I even had the pharmacy send butterfly needles to endure daily sticking because it seems like she infiltrates with the catheters.  I started my infusions on Wednesday, and 2 veins infiltrated, and she ended up going into the large vein on the inside of my elbow.  Then day 2, she infiltrated another vein, and went back into the vein she went to day 1.  Day 3, she ended up in the ER for 8 hours, and didn't call me until the evening so, didn't get my infusion yesterday at all.  She came this morning, and I was so sick of being stuck that I made her go into the fat vein in my ankle.  That one blew, too.  She ended up going into the same spot as day 1 & 2.  My nerves are SHOT, and I don't know why my veins are infiltrating so much.  My skin is almost normal, my veins are plump and bulging, and I had outpatient surgery a week ago at the hospital, and thought the anesthesiologist was going to have issues putting in an iv.  I told him about the problems I've had and that my veins weren't good.  He touched my skin, laughed, and said “there's nothing wrong with your veins.”  He got the iv in without any problems whatsoever.  Has anyone had a bad experience with home healthcare nurses getting veins?  Am I just in denial about the fact that maybe my veins aren't good anymore, even though when I get blood drawn or go to the hospital for anything, NONE of the staff there has EVER had a problem getting my veins…even when my skin was as tight as a drum? I had my third visit with Dr. F last week, and he said my veins looked great (and that I'm 90% close to remission:)), and that he didn't see the need for me to get a port or picc line. 

Do I stop the insanity and go into an infusion center?  When I was in Iowa in January at Dr. S, my skin was the tightest it has been, and they had no problem getting a hep-lock in.  Can someone that uses an infusion center please let me know what their experience has been?  I'm a strong person but, I seriously feel like I'm going to crack here. I have never had a problem with needles…now I'm covered in sweat and shake before I get infusions–totally needle phobic now.  It's hard enough having this disease and, I don't want the treatments to be unnecessarily hard, too.

Thanks for you advice and support.

A very exhausted Maria:(

[Trudi]

[user=977]mschmidt[/user] wrote:

Thanks for you advice and support.

A very exhausted Maria:(

Can't give you any advice because I'm not familiar with IV's–although it does sound like this home healthcare does not have very well trained nurses in giving IV's.  I feel for you and will keep you in my prayers.

Take care,

Trudi 

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[mkbeeliever]

Oh Lord, I'm getting woozy just reading this, I'm SO VERY SORRY!  I believe it's technique.  I truly do.  My mom has struggled tremendously with this very same issue with IVs, Blood work and with her dialysis fistula. There were times she was hysterical crying when she was in the hospital in April.  She was there for 15 days and she was stick every day several times a day…Plus every 3 days her IVs had to be changed.  She went over the edge several times.  They tried pediatric needles etc.  Some could get the blood and do the IVs fine, others could not.

Some people just have the good sticking gene.  Others don't.  My mom is a nurse.  She says that it is definitely an art and not everyone is competent in this regard.  My mom was one of those nurses that EVERYONE wanted her to do their shots and take their blood.  She was that good.

I will pray that you find a solution – I am sure you will!  Hang in there…90% remission, PRAISE GOD!

You are an inspiration!
Blessings,
Michelle

[Kim]

Hey Maria,

I'm so sorry and boy can I relate.  When I was in Iowa they had to put in a new small butterfly each time because my veins couldn't hold.  Even now, before blood tests we have lots of discussion on minimizing trauma to my only remaining vein that still sort of half-way works.

I wouldn't continue with the home health with the trouble you've had.  As well as you're doing now, maybe orals alone will get the job done.

Take care…..kim

[Randy]

[user=977]mschmidt[/user] wrote:

…I love her dearly but, my veins are infiltrating beyond belief.

Maria – You have got to get someone who can reliably get the IV in.  I will not let the head triage nurse at my clinic stick me, even though I “am her patient”.  She knows it and has gotten over it – like I really care about her feelings after she used to turn me into a pin cushion.  It's okay that you love you home care nurse so dearly, but you need to take care of yourself.  Yes, if I were you, I'd go to an infusion center for a while.

By the way, if you are 90% to remission (and congratulations about that!), how much longer does Dr. F. plan on you getting 5 days of 1200mg Clindy's every three weeks?

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[mschmidt]

Thanks everyone.  My iv went great today, and tomorrow is my last day so, it has to go well, right?  I honestly don't think it's my veins, and agree that technique is everything.  I actually had to take something to calm me down beforehand today, since anxiety can make the veins disappear as well.  I'm calling my insurance company tomorrow to see where the nearest infusion center is for me. 

Randy-Dr. F said that he normally does a minimum of 18 months for the iv's, and would rather go too long than not long enough.  That means through next September for me….although we will re-evaluate on my visit in February.  He hasn't changed my treatment protocol at all, since I've responded so well to it. 

Kim, you'll appreciate this…The only thing Dr. F and I didn't see eye to eye on was that Lyme disease (which I tested positive for in March) definitely needs to be addressed at the same time–which I have been taking orals for since May.  At my visit with him last week, he acknowledged that Lyme definitely was a factor in my illness, and he even suggested  piggy-backing Zithromax w/my clindamycin.  He's working with my Lyme doctor to figure out what combo works best.  I'm SO lucky to have such a great AP rheumatologist (oxy-moron, right?) and Lyme doc working in harmony with each other.  Thanks to your advice, I got the Lyme test, found an LLMD, and started my treatment within 2 months of diagnosis, and start of clindy iv's.  I want to get it ALL taken care of at once–figure that ups my chances of reaching remission faster. 

Thanks for all the support everyone–it makes a HUGE difference in my sanity level.

Maria

[carries]

Hi! There are no lyme doctors here in ohio….do you go to one in the chicago area?

[Kim]

[user=977]mschmidt[/user] wrote:

Kim, you'll appreciate this…The only thing Dr. F and I didn't see eye to eye on was that Lyme disease (which I tested positive for in March) definitely needs to be addressed at the same time–which I have been taking orals for since May.  At my visit with him last week, he acknowledged that Lyme definitely was a factor in my illness, and he even suggested  piggy-backing Zithromax w/my clindamycin.  He's working with my Lyme doctor to figure out what combo works best.  I'm SO lucky to have such a great AP rheumatologist (oxy-moron, right?) and Lyme doc working in harmony with each other.  Thanks to your advice, I got the Lyme test, found an LLMD, and started my treatment within 2 months of diagnosis, and start of clindy iv's.  I want to get it ALL taken care of at once–figure that ups my chances of reaching remission faster. 

Hey Maria,

So happy to hear your IV went well today.  Remember to drink a ton of water before the next one to plump up your veins, it does help.

The Lyme/SD combo is bizarre.  Can you believe how many people we've seen just on this board alone recently with that combo?  Only by dumb luck did I figure it out and sought out help from an excellent LLMD that assured me that treating the Lyme would take care of the SD and he was right.  At the time I asked him if he had other patients with Lyme/SD, he said he currently was treating about 5, which makes you think there are more, just undiagnosed with SD.

You're on the right track and it should be smooth sailing for you now. 😉

Take care…….kim

[nspiker]

Maria,

Glad things went better today.  I just got through with a round of IV clindamycin, and the infusion nurse tried to stick me in the large vein on the outside of my arm by the bone.  It really hurt, and now there's a big bruise.  This nurse told me she doesn't like to have her own blood drawn, and has to look away…..go figure.  You would think that they would be experts at this!

I was hoping you could share whatever protocol your llmd and Dr. F decide upon.  I too am a patient of Dr. F., and saw him last week.  I brought up the possibility that I might have lyme/babesia per the Igenex tests that he ordered.  He ruminated on the possibility for a while, then advised me to continue with the same treatment, because I was responding well to IV clindamycin.  A local llmd that I met with wants me to add zithromax and flagyl.  Maybe I should do as you have, and get Dr. F. to talk with this llmd to determine the correct protocol.  I am just confused, and don't know what to do.

nancy

[musher]

You may also consider a midline IV put in during your treatment. Ask your doc about it. I too feel its the responsibility of the company to provide nurses able to insert IV's correctly. Keep us posted

kim

[Kim]

[user=1552]nspiker[/user] wrote:

I was hoping you could share whatever protocol your llmd and Dr. F decide upon.  I too am a patient of Dr. F., and saw him last week.  I brought up the possibility that I might have lyme/babesia per the Igenex tests that he ordered.  He ruminated on the possibility for a while, then advised me to continue with the same treatment, because I was responding well to IV clindamycin.  A local llmd that I met with wants me to add zithromax and flagyl.  Maybe I should do as you have, and get Dr. F. to talk with this llmd to determine the correct protocol.  I am just confused, and don't know what to do.

Hey Nancy,

If the two docs can't/won't work together then I would pick the LLMD.  What the LLMDs do is much more complicated and definitely requires someone experienced.  In my four years of treatment(s), I have to say the drugs that did me the most good were Mino, Zith, and Flagyl, but we all have our own unique mixed bag of infections so what's good for me may not be the best for you.

Good luck sorting this out…….kim

[mschmidt]

Carrie,

I initially went to Dr. R in NYC, and now have an appointment with Dr. M in Fond Du Lac, Wisconsin. (a lot closer for me).  You can PM Kim or Lynne for a list of LLMD's.  Illinois does not have any good llmd's that I would trust, but I know we're in the process of getting a few interested in practicing.  I have a board meeting tonight with the Chicago Lyme group, and will get an idea of how long that process will take.  As soon as we get these physicians on board, I will let the appropriate people know, and add them to the list.  God knows we sure need some good LLMD's in Illinois!

[mschmidt]

Nancy,

I definitely will share what Dr. F and my LLMD decide on.  I've been taking Omnicef, Plaquenil, and Biaxin since May, along with my Minocin and IV clindy every month.  I had the chance to speak with some very prominent LLMD's at a premiere of “Under Our Skin” this summer, as well as am friends with Mandy, one of the women featured in the documentary.  I was happy to hear that many of them are using Clindamycin as a front line treatment for severe cases of Lyme.  I think the SD/Lyme combo is a severe enough case to warrant the treatment.  I also know that the Lyme protocol and SD protocol have A LOT of overlap and similarities, as far as treatment and the types of antibiotics used.  Kinda makes you wonder what we're being treated for. 

My appointment is on 11/30, and I'll post what my protocol is after that.  Just to re-iterate what Kim said…it's VERY important to find a good LLMD if you have Lyme Disease, so that they can figure out what combo works best for you.  Everyone is SO different, and there is no “one size fits all” protocol. 

Best of luck to you!

Maria

[nspiker]

Kim and Maria,

Thank you so much for your feedback.  My hesitation is that I am not convinced that I have lyme/babesia.  My Igenex test was negative, and my babesia equivocal 1:40.  The llmd PA actually asked me why I had the 31 epitope, since my tests showed only Ind for band 31.  It would be easier if I knew for sure it was lyme.  I am still trying to decide if I need to see one of the doctors in the bay area, like Dr. H  or Dr. S. 

Right now the llmd thinks I should treat toxoplasmosis, and Dr. F. doesn't think I have toxoplasmosis.  The llmd thinks that toxoplasmosis could cause lyme-like symptoms.  I did start the toxo treatment, and I can feel tingling and the swelling in my head alleviated.  I guess I'll stick with that for now, and see if it works.  I just feel uncomfortable with more than one doctor, and no agreement on treatment. 

Kim, I am encouraged by your results with the mino/zith/flagyl protocol and have heard that flagyl is tough to take.  Maria, I don't have SD, but am on a similar protocol, and look forward to what your doctors determine to be best for your situation.

Thanks and sorry Maria for hijacking your thread!
nancy

[Kim]

[user=1552]nspiker[/user] wrote:

Kim and Maria,

Thank you so much for your feedback.  My hesitation is that I am not convinced that I have lyme/babesia.  My Igenex test was negative, and my babesia equivocal 1:40.  The llmd PA actually asked me why I had the 31 epitope, since my tests showed only Ind for band 31.  It would be easier if I knew for sure it was lyme.  I am still trying to decide if I need to see one of the doctors in the bay area, like Dr. H  or Dr. S. 

 

Nancy,

Band 31 is VERY Lyme-specific.  My doc says an indeterminate means they saw  something  and he considers Ind as a weak positive.  Here is a link to one doctor's explanation of the Western Blot.

http://www.lymenet.de/labtests/brenner.htm

Although I herxed on Flagyl it wasn't as bad as many report, and it made a huge difference in getting things under control.

Take care…….kim

[Author]

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