Lyme disease treatment options

[Maz]

[user=1758]Roz[/user] wrote:

I live in a tropical area, their are BUGS everywhere! You can't even open a window the bugs come thru or screens.

 

Uggg…bugs…Hmmmm…bugs or freezing temps? That is the question! Okay, better re-assess my position on this one.  😉

Peace, Maz

[Pixelfixer]

Thanks Maz.

Since my last post, I spoke with Dr. S. on the phone and we discussed the Lyme and Mycoplasma testing. As you stated, he does an initial Mycoplasma test mainly for insurance coverage purposes. But, he agrees about the ambiguity factor in mycoplasma testing and that it wouldn't change the treatment protocol so, in his opinion is unnecessary. He also doesn't think Lyme testing is necessary, but I'm convinced otherwise and would like to know the results of this test up front. So we will be starting her on 1200mg IV Clindymiocin, once a day for 10 days and then once per month along with an oral application as well, I don't have all the details yet, we are still trying to get a date scheduled to start this.

We have also been looking at doing the IV's at home. We know a number of nurses that would be willing to stop by and get it started and then we could be trained in removing the IV when complete. This looks like it could possibly cut the cost in half. (I'm not a cheapskate, but this downturn in the economy has hit us hard. And with our high-deductible insurance policy, we will be paying everything out-of-pocket.) So, we are looking for the best alternative and also ways to smartly manage the funds available. We're getting by o.k., just need to be smart about things and frugal as possible.

So, has anybody else done the “visiting nurse IV administration” thing? Do you see any pros or cons?

[Maz]

[user=1938]Pixelfixer[/user] wrote:

He also doesn't think Lyme testing is necessary, but I'm convinced otherwise and would like to know the results of this test up front.

We have also been looking at doing the IV's at home. We know a number of nurses that would be willing to stop by and get it started and then we could be trained in removing the IV when complete. This looks like it could possibly cut the cost in half.

So, has anybody else done the “visiting nurse IV administration” thing? Do you see any pros or cons?

Steve, this sounds like an excellent plan to get your daughter started and great job for getting everything organised so swiftly for her. :dude:  I think Kim has already mentioned that Dr S isn't a Lyme Literate physician and is likely unaware of all the possible coinfections that would need separate treatment. This is not to criticize him, but the common belief about Lyme is that it's easy to diagnose and treat and, unless one has researched and studied the organism and its hitchiking friends, it's not surprising that one would believe this. I live in the epicenter of Lyme country and I had no idea about it all until it got me. Put it this way, IV clindy at intervals and minocycline alone in most cases of Lyme just isn't enough. So getting your tested thru IGeneX is a wise early step to take.

By way of an example, I spoke to a lady in MA who had RA since the 90s and she was fortunate enough to bump into the RBF Pres at that time (Diane Aronson whose story is in the book) and she got herself to Dr S and was treated successfully with AP until she had a run-in with breast cancer and had to start taking various chemotherapeutic agents. After an RA relapse, she was never able to quite get back her remission on AP alone. When we spoke, she mentioned she'd always wondered about Lyme, as she had a rash a month or two before her RA set in that her doc dismissed as a spider bite. She then got herself to a LLMD in NYC who diagnosed babesia, a protozoan, malaria-like coinfection of Lyme. When her results came back, his clinical assessment was absolutely correct…she was highly positive for babesia. After starting Lyme treatments, incorporating babesia meds, she had begun to feel her old self again (last time we spoke). Point being, she had never been sufficiently treated for her babesia coinfection on AP alone, in spite of the fact that her IGeneX Lyme labs returned negative for borreliosis….the Lyme was in remission, but the babesia had never been properly addressed.

Another side to all this…and this may be TMI at this point, is that my ideal doc for all rheumatic patients would be a combo of a LLMD and an AP doc. That is, a doc who is aware of the hypersensitivity of the rheumatic, but still willing to use the full artillery to hit all the infections. These kinds of docs are few and far between, but as long as a physician is open to feeling their way by using patient response as their guide then this is the ideal, as each person will respond differently to any treatment.

I can't tell you much about home IVs as I haven't had them done, but this would be my ideal situation if I were to do them….definitely…not to have to travel to and fro twice a day to a doc's office and have travel costs and in-office infusion costs on top. To have the IVs and not to have to leave home is a great option. I'm sure others will  be able to share their experiences of home nursing doing the infusions…again, though, I think everyone's experience will be different. If you have qualified nurse friends willing to insert the IV line without having to go through a home infusion service, this should definitely cut costs for you.

Peace, Maz

[Kim]

Steve,

Nice job, dad! 

You are doing everything you should be doing: asking lots of questions, doing your own research, talking to doctors, and then deciding what makes sense for you and your daughter.  It goes against our grain to question the advice of our doctors, but with these ambiguous diseases with so many cross-over symptoms you could get 10 different diagnoses from 10 different doctors.  I quickly bought into the infectious theory at being at the root of my problems and so many others' problems, and a specific “label” became less important if the treatment would be the same.  Beginning AP treatment is pretty routine and you can then rotate in other abx if needed.  Lyme tx as you've gathered by now is a whole different animal.

I know you feel like you've just barely got your feet wet, but you really have made a lot of progress, so good on you. 😉

Take care…..kim 

[Pixelfixer]

Thanks Elaine. Do you pay directly for the Clindy from the infusion company or is this all handled by the home care nursing company? My local pharmacy said they don't stock it but could order it, but would need a doc to prescribe it. That's not a problem, but wondering if it would be less expensive direct from a company like the one you're working with.

Thanks,

Steve

[Pixelfixer]

Thanks Maz, Kim, for your concern and information. It's really great to work through these tough decisions with “first-hand” experienced persons such as yourselves.

I'm a “techie” person and I appreciate the roll of science and the exact parameters a scientist needs to work within to arrive at credible decisions based on irrefutable data. But sometimes I also think you have to go with an educated “gut” feeling in the absence of available “absolute” data.

I feel we are on the right path thanks to many of you on this board and I can't thank you enough for the support you provide; plentiful, thorough, thoughtful, caring, inspirational and educational! (and for free!) Wow! I hope that I can, some day, accumulate enough credible knowledge through all of this so, in turn, I may help others through their “storm” and somehow return the favor.

With overwhelming gratitude,

Steve

[lynnie_sydney]

I'm a “techie” person and I appreciate the roll of science and the exact parameters a scientist needs to work within to arrive at credible decisions based on irrefutable data. But sometimes I also think you have to go with an educated “gut” feeling in the absence of available “absolute” data.

Steve – I believe that outlook will serve you very well. Indeed, it already has. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Davit]

Steve

In canada we have a home IV program and I have done it except that I had a pick line in. I did it because I had staph and the Drug had to be administered every six hours. It is really easy and safe. That time I did it gravity. The last time they lent me a pump because it was every four hours. It is so much more comfortable at home. No line ups. I did the whole route I mixed the drug and put it in the bags and hung them. I set a timer so I could doze but there is no worry about the bag running out it can't. You can certainly do it. I did have to have a nurse change the dressings because you can't do them one handed but you could probably do that to.

Good luck.
Davit.

[Parisa]

Steve,

You are really moving the ball along.  You've lined up Dr. S, and have plans for Lyme testing and infusions at home.  Some people get stuck at just the thought of going to a different doctor.  Being open and learning from all of our experiences is serving you very well.

My husband had a central line placed and did IV antibiotics at home for almost two years.  (I know you aren't there yet as far as central lines and hopefully you won't need it).  We learned very quickly from the nurses how to do everything ourselves.  Once the anxiety of doing it yourself passes, it is much more comfortable to do it at home in your own environment and on your own schedule.

You can try calling the infusion companies but I think they may be more expensive than a pharmacy.  I know I've read posts on Lymenet on less expensive sources.  If I get a chance, I'll hop over there and take a look.

Well, I did a search through Lymenet and haven't pulled up too much.  There used to be a really good thread detailing some of the better sources for IV supplies but I haven't located it yet.  There were some suggestions for Costco, Sams Club, OptionCare for IV meds and Allegro Medical, Medhaus and Infuserve for IV supplies.

[A Friend]

[user=1938]Pixelfixer[/user] wrote:

Thanks Elaine. Do you pay directly for the Clindy from the infusion company or is this all handled by the home care nursing company? My local pharmacy said they don't stock it but could order it, but would need a doc to prescribe it. That's not a problem, but wondering if it would be less expensive direct from a company like the one you're working with.

Thanks,

Steve

Steve, in an earlier post in this thread, you mentioned the economy and saving if possible.  This triggered something a local person was able to do regarding IVs — similar to what PixelFixer has posted.  If the cost of the infusion abx is high, the local person mentioned she had gotten the physician to write an RX for the infusion med and purchased it from Wal-Mart, and the cost was very low.  Just another thing to consider…. when looking at the big picture of your options.  Good luck for a great result.

AF

[nspiker]

Steve,

I don't think I've ever seen anyone move so fast in getting things in place for treatment.  Most of us take a while, especially with IV's.  Sorry your daughter has to deal with this…

My illness is different than your daughter's, but am a big proponent of IV clindamycin.  It will give your daughter a big jump-start on her recovery.

Currently, I am doing IV's at home with a home health service who administers the IV.  If you have nurses that are willing to help, then you should be able to do it perfectly well.  It is easy to flush after getting treatment, and you should be able to do that yourselves.  The only info I wanted to impart is the challenge in getting the needle in, and keeping it there for four days (the recommended time).  I found, just recently, that using a butterfly, and removing it every day, was the best for me.  Also, no flushing is required.  You will be able to know what works for your daughter. 

Good luck finding a less expensive version of the clindy.  Once you get this all figured out, we'll want your expertise and “how to” for doing it yourself.  I do know that Lizz did her own IV's from home, you may want to pm her.

nancy

[Pixelfixer]

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

I don't think I've ever seen anyone move so fast in getting things in place for treatment.

[Cheryl F]

Steve,

You are moving about as fast as possible.  Nancy said that she had not seen anyone move as fast.  It is so funny after having participated on this forum for several years, there is a definite pattern to who moves the quickest. IT IS THE PARENTS.  Then the caregiveers.  It is so funny how the patients themselves (myself included when it comes to my own health) just take their time to figure it out and usually move much more slowly in to starting an AP protocol.  But parents, just jump in, it is wonderful to watch, and most of us who have been here for some time know what usually happens, the kids get better quickly.  It is so wondeful to get to witness this. 

For me, Jess was diagnosed on May 24th.  I learned about AP on June 10th.  Bought and read the scleroderma book on June 12th.  She had her first appointment with a local AP doctor on June 24th, started IVs that day too.  We flew to Boston to see Dr. T on July 5th.  Hooray for impatient parents, you go Steve, we are all here routing for you!  You know “the rest of the story!”

Cheryl

 

[Cheryl F]

[user=1938]Pixelfixer[/user] wrote:

 When we asked for a list of AP docs in our area from the volunteers at Roadback.org, we received the name of one doctor in Sioux Falls, SD (right next door to us). We have two very large medical centers in S.F. and lots of docs, but only one was listed as using AP and it happened to be my wife's family practice doctor of 23 years and a wonderful person! Everything has just fallen into place like an answer to our prayers (and the prayers of many others on our behalf). Praise God!

Now that is synchronicity!  It is hard to ignor this type of “coincidence”!

I am overwhelmed with joy that there was a doctor for you to see, these doctors are few and far between in the less populated states, there even pretty few and far between in the more populated states.  The closest AP doctor to us (Sacramento CA) when I requested the list, was a three hour drive (one way).  Then add to it that the one and only doctor is your wife's well liked doctor.  Just wonderful.

Cheryl

[Pixelfixer]

Fellow parents need to stick together with these tough illnesses!

Thanks Elaine, I agree. The only thing more effective than a parent trying to protect their young is a whole team of parents doing the same! Lookout obstacles!

Steve

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