has anyone done IV clindys at home

[Fran]

Has anyone had IV clindy's prescribed by Dr. S done in their hometown by a home health nurse?  How do you go about doing that?  I'm needing to probably do IV clindy again and can't go to Dr. S this time but was thinking of seeing if he could prescribe it but didn't know where to go for the actual IV?  Can anyone offer any guidance on this?  Thanks!

[Maz]

[user=123]Fran[/user] wrote:

Has anyone had IV clindy's prescribed by Dr. S done in their hometown by a home health nurse?  How do you go about doing that?

 

Hi Fran,

Nice to see you, but sorry to hear you might be needing IVs again. How did you do in the months following after switching out of mino?

Here is a link to a thread where IV home infusions done through Dr S was discussed. Hopefully it will provide enough info to get you started discussing this with him. From what I understand, he will do what he can to help his patients do this successfully.

http://www.rbfbb.org/view_topic.php?id=3646&forum_id=1&highlight=dr+s+ivs+at+home

All the best to you and please let us know how it all goes for you!

Peace, Maz

 

[Joe M]

Hi Fran,

We are also in Iowa (Des Moines), and did home IV's through Dr. S. in Ida Grove. 

If you have insurance, it would best to contact them first.  They will tell you which home infusion agencies they cover.  Then you call the home infusion service and set it up.  Simple as that!

The first day they come, in our experience, they put in a pic line and help you with the first infusion (they also bring the clindy bags).  After that, you can do the next infusions yourself.  Then on the last day they come and take the line out. 

They are available any of the days if you need help.

Good luck
Joe

[Fran]

Thanks Joe and Maz for the info!  I'm going to look into it.  I've been to Ida Grove once and do talk somewhat regularly with Dr. S so I'm hopeful he would be ok with it.  I just wasn't sure of the protocol here with them.

Maz, to answer your question, I just am not seeing any improvement on doxy and feel much worse.  I'm pretty sure my signature line is outdated but here's the update:

I stopped mino in March of 2008 (due to an increased sensitivity) and was symptom free until July of 2009.  I began to have some symptoms then and started doxy at that time.  I just kept getting worse and worse and then in September I thought the doxy just wasn't doing anything so I thought I'd just give a little mino a try.  Big mistake, as you remember!  I recovered from that and restarted doxy again but I am getting worse and worse with all my joints inflammed and very swollen and painful.  I have already had one round of clindy back in August of 2007.  I'm not sure what else to do at this point.  I started out on doxy 50 mg mwf and have increased it to 100 mg mwf.

Its pretty discouraging at this point.  I'm just not sure that doxy is helping me like the mino did.

[Maz]

[user=123]Fran[/user] wrote:

Maz, to answer your question, I just am not seeing any improvement on doxy and feel much worse.  I'm pretty sure my signature line is outdated but here's the update:

I stopped mino in March of 2008 (due to an increased sensitivity) and was symptom free until July of 2009.  I began to have some symptoms then and started doxy at that time.  I just kept getting worse and worse and then in September I thought the doxy just wasn't doing anything so I thought I'd just give a little mino a try.  Big mistake, as you remember!  I recovered from that and restarted doxy again but I am getting worse and worse with all my joints inflammed and very swollen and painful.  I have already had one round of clindy back in August of 2007.  I'm not sure what else to do at this point.  I started out on doxy 50 mg mwf and have increased it to 100 mg mwf.

Its pretty discouraging at this point.  I'm just not sure that doxy is helping me like the mino did.

Fran, thanks for your update and really sorry to hear the doxy hasn't been as good for you as the mino. I understand your dilemma as it has been similar for me. I had reached credible remission on mino, both in labs and symptoms, and then drug-induced lupus hit like a sledgehammer to burst my bubble….rarely happens, but in my case it did. 

The doxy hasn't seemed to be as effective for me either. However, it's been a real blessing working with my Lyme doc, who encouraged me to try Moxatag, an extended release penicillin, in high doses. I was pretty ambivalent about it and still in mourning over my mino! :crying: However, he said he'd been having some great success with others in my boat (RA/Lyme) and to give it a go for a few months to see how I went. Well, the herx was pretty monstrous (definitely hitting the target) and, after a month, my labs were moving back in the right direction and have continued to do so while I have been on it. Apart from one rickety knee, I wake with no morning stiffness and feel, for the most part, RA-free. Pretty amazing as I was just so severe.

This is just a thought, but were you ever tested for Lyme disease? I'm sorry if you've mentioned this before, but I can't remember if you had IGeneX labs run or not. Iowa is pretty bad for Lyme and it might just be that working with a doc who uses combination therapy might be a step in the right direction. Dr S, lovely man that he is, is not Lyme Literate. He has told a few folk now that AP will be sufficient for Lyme…and in a few cases where patients have mild disease and aren't badly coinfected, this may well be true. Unfortunately, though, in most chronic cases of Lyme, it needs an experienced practitioner who will go after coinfections and its cystic form. I'm just wondering in your case, because your RA seems to be of the waxing/waning variety, which is so classically Lyme-like. The other thing about an experienced Lyme doc is that they have a pretty good sense about what antibiotic combinations are needed and aren't afraid to use them, knowing just how devastating this set of infections can be if left ignored.

Anyway, just putting that out there to you in case it might be of help in some way. 😉 If you do decide to get IGeneX labs, there is plenty of info on this using the search box above or one of us here can help with further info. Of course, not saying you have Lyme or anything…just saying it might be worth ruling it in or out, as Lyme treatments vary significantly from AP in both combos and doses and, had I not known I had Lyme, I would be in pretty bad shape now.

All that said, you might find that a round of IV clindy breaks through some barrier and that a dosage tweak or addition of a second antibiotic does the trick for you (I remember zith causing elevated liver enzymes, but there are other combinations that could be tried). Nothing wrong in going this route, too, if you want to give it a go. All of this can be a bit of a crapshoot and it's just figuring out which direction to take. For many, getting IGeneX labs run seems to be helpful in unraveling the mystery.

Let us know how you get on, Fran!

Peace, Maz 

[mschmidt]

I have clindy iv's monthly from Dr. F but, had to have my IM doctor order the home health care.  I now go to an infusion center to get the heplock (not picc line, which needs to be done at a hospital, if I'm not mistaken) put in, then do the rest of the infusions at home, and pull the catheter out myself on the last day.  DEFINITELY check with your insurance first to see what your policy covers.  Mine covers 60 home health visits, and 60 infusion center visits per calendar year—and they're covering all of it, no questions asked. (lucky me) I have online access to my insurer, and am able to check claims, coverage, network providers, etc.  I just read the PDF version of my coverage online.  I'm very happy to be able to do this at home instead of going into a doctor's office every time.  Wishing you the best of luck, and I'm sorry to hear you aren't feeling well.  Hang in there, and feel free to PM me with any questions.

Maria

[DiamondTNT]

I do the IVs at home and finally found a company that is a 'partner' with my insurance company that covered 100% of the cost.  It's great being able to do them at home.  I'm going to check on getting a picc line.

[Fran]

Thanks everyone for the info.  Maz, I did have a lyme test by my regular doctor but it wasn't by Igenex.  It was negative.  I know that I should not trust that test but I haven't done the Igenex one yet.  I have no recollection of a tick bite ever and have never had a rash or anything.  Could it still be lyme?

I kind of feel frozen in indecision right now as I get so many different opinions and no real idea of what's true.  My rheumatologist (whom I haven't seen in over a year) calls my condition a chronic autoimmune disease and I need immunosuppressants, my naturopath says I need all my mercury fillings out as I have mercury poisoning, Dr. S says I have a mycoplasma infection (which the bloodwork actually supports), or maybe its lyme? 

Do you think I should give the doxy a little more time on 100 mg MWF.  I just raised it to 100 mg last week. 

I'll read back on old posts to see how to get the Igenex tests.  My doctor will roll her eyes at me if I ask for another lyme test.  Do you know if there are any lyme literate docs in Iowa?

Thanks again!  You'd think after 4 years of this, I would have figured it out by now!

[Maz]

[user=123]Fran[/user] wrote:

Maz, I did have a lyme test by my regular doctor but it wasn't by Igenex.  It was negative.  I know that I should not trust that test but I haven't done the Igenex one yet.  I have no recollection of a tick bite ever and have never had a rash or anything.  Could it still be lyme?

Dr. S says I have a mycoplasma infection (which the bloodwork actually supports), or maybe its lyme?

Do you think I should give the doxy a little more time on 100 mg MWF.  I just raised it to 100 mg last week.

I'll read back on old posts to see how to get the Igenex tests.  My doctor will roll her eyes at me if I ask for another lyme test.  Do you know if there are any lyme literate docs in Iowa?

 

Hi Fran,

I know how you feel…if only we knew ahead of time how to go about all this when we were well and not having to wade through the murk when we are sick! Mind you, who thinks of this stuff when we're well?

Thing about Lyme is most people never see a tick and only about 50% of folk get a rash when they do get bitten. Some researchers are now saying it's also passed not only by ticks, but fleas, mites, biting flies and mosquitos. 😕

The other thing about Lyme is that it's not just one infection that is usually passed, but many coinfections, including various strains of mycoplasma. Here is a short video clip that explains this:

 http://www.envita.com/sections/disease/lyme/default.aspx

There is one LLMD listed for Iowa, but I would suggest contacting the Iowa Lyme disease Assoc and asking them for recommendations. Lots of info on their site:

http://www.iowalymedisease.com/index.html

If you just raised your doxy dose last week and your symptoms started then, then yes….you could well be herxing, so you could wait it out for a few weeks and see how you go.

In many ways, no one wants a Lyme diagnosis as it's just so controversial now, but it's definitely “better the devil you know” as antibiotic treatments for Lyme are quite different from AP.

Will keep you in my thoughts, Fran…and hope things ease off for you soon.

Peace, Maz

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