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1763947 tn?1334055319

Why IV as opposed to oral anti biotics

As many of you know, I finally saw my LLMD last Monday. After 3 hours of being in there, I wrote things down and didn't think of this question which I will ask her next Friday when I return.
I would like your take on this.   Does anyone know why some LLMD's give you oral antibiotics and then some insist on IV therapy? I have a FL support group and my good friend on there, the head of the group, does only oral therapy. My nurse friend in VA, only IV. I am very curious.
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Avatar universal
I was never on doxy, so if it tears up your stomach, ask the doc for an alternative, or ask now if you know it's going to be a problem.  Tell him your experience with it previously.  
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1763947 tn?1334055319
BTW, I have no veins, never had so I would have to have a pic line or I prefer a medport to do IV's that is why I am starting with orals but will switch if no luck
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1763947 tn?1334055319
Yes, I have looked at his blog, thanks for telling me about it.
Well the rotation is just one protocol that others, a nurse friend of mine who has Lyme, has done, I will try it for a couple of months and go from there.It actually is hard on my gut, but maybe that two weeks off will help.  I am experiencing serious herxing which is difficult but it feels good to be seeing an LLMD finally plus she mixes alternative therapies with it. I am from Northern VA and one of the most famous LLMD docs there, where my nurse friend goes, also does alternative therapies along with the regular medicine. We shall see.
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Avatar universal
Have you seen the LymeMD blog?  He blogs about treating Lyme patients.  (Have I mentioned this before??)

Sometimes he talks about different therapies and oral vs. IV.  It's great to hear a doctor's perspective.  He mentions attending an ILADS conference, but he doesn't call himself an LLMD (although he is clearly Lyme aware).  I don't think I've seen him mention a rotating protocol, though.

I look forward to hearing how it works for you!  I imagine it will be easier on the gut than a continuous approach.
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1763947 tn?1334055319
I can't even catch all the typos but figure you all know what is going on and you are right Ricobord, especially another Lymie..... should have patience with another Lymie who was only trying to do good.
I already told my friend,  the head of the group, I am not going back on there at least for a long while, the people are not as considerate and friendly as you guys are and it does mean a lot because we are all in the same boat even though we may have different co-infections etc. I dont need to be slapped down because I am new to the group and didn't know she knew that info already. I would have very nicely said, I do know that but thank you.
Anyway, just my opinion and what do I remember anyway???? LOL
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Avatar universal
I definitely have had the Lyme Language thing!  Even my user id has a typo in it. I set up my medhelp account when I was at my worst, and I didn't even notice the typo until later when I couldn't login.  I had to go find the confirmation email again to figure out what was wrong.  Now every time I log in I am reminded of it.

I have to re-read my posts carefully before posting, as sometimes they're just messed up.  My mistakes are getting fewer, which is a good sign, but I have definitely had issues of misspelling, typos, grammatical errors, and meandering thoughts!  One has to be patient and tolerant of us Lymies! :)
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Avatar universal
Well, the woman on prednisone will be sorry!!  Yeow!  
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1763947 tn?1334055319
Strange but I have that too. I also ramble and skip around talking about different subjects and then forget what the original topic was.
I am glad to have people to talk to that understand because people look at you like that cartoon, you must be nuts.... It is hard. Actually I just started going on my FL support group. I am good friends with the leader and we talk on our own but I decided to go on the group site. Today I said something to a woman who started prednisone and I said that I read about Lyme Patients are not suppose to be on prednisone. That topic must have been talked about before or something because the woman jumped down my throat big time. I said to myself, I don't need this, I am going back to my med help group. :-)
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Avatar universal
Your doc sounds thoughtful and wise, knowing that no one knows everything and that Lyme is a tricky devil.

My typing was no worse than usual when I was really ill, but I found that I would confuse unrelated topics in my head ... if I was going to the grocery store but had been thinking about a specific event I was going to, I would find myself in the grocery store looking for food to take to the event -- but I wasn't supposed to take food to the event!  It was just that the two topics got blended in my brain.  Like the topic boundaries were blurring into each other.

Strange, huh!?
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1763947 tn?1334055319
I am going to Google him, thanks. What I like about my doctor, who is a holistic doctor but combines holistic with regular medicine for Lyme patients, is that she has many articles printed out by many different doctors and what their protocols are and she said you can feel free to pick any if these others if the  rotation doesn't work and then she said she would always be willing to discuss my case with any other LLMD, that I would like her to talk with. So I feel like I am in good hands.
Do you have the Lyme Language thing....you think you are typing a word but it comes out all wrong when you look at it on paper? My facebook group calls it the Lyme Language thing, LOL. I have it really badly.
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1763947 tn?1334055319
Thanks Jackie, I appreciate your comments. Hope you are doing well.
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Avatar universal
Thanks for sharing that information and approach -- it's very interesting.  My LLMD had a 'big-guns' kind of approach to antibiotics, so hearing of the other ways is instructive.  Lyme is such a developing area of medicine -- I'm glad docs are thinking their way through it!

Congratulations on all your wonderful family events coming up -- enjoy!  and take care.  J.
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1763947 tn?1334055319
Thank you Jackie. The one I am starting with is the Adkinson-Burr rotation, I have read up on it and there are more good results than bad but who knows.  ILADS mentions it as a potential. One lady I know actually goes to one of the doctor's on the board of ILADS and does the rotation so its a first step where some get results and as you know , it just depends on rather it will work.
I have things going on with the next couple months, like my daughter getting married, the other daughter graduating college, a trip with my fiancee and so I want to have more control with orals  over how I feel so I am able to go to DC for these functions. When on orals, you can back off some to feel better then when these things are over, I will go back on the full strength and eventually I am not opposed to IV if this other protocol doesnt work. Since on of my friend sees that doctor on the board of ILADS and he agrees with orals and adjusting it for what is happening in your life, I am going to try it. I would never go down the amounts if i didnt have the wedding and graduation and have to fly. Just trying...
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Avatar universal
There is an author named Bryan Rosner who had Lyme, and in the process of getting well, dug into everything he could on all the different treatment approaches.  He has written a bunch of books, has videos online, and is very energetic about communicating all the possibilities of treatment from antibiotics to Rife machines and everything in between.  (And he has his own publishing company, so this has become a business for him.)

He freely admits that he's not medically trained, but he clearly has an inquiring mind and is eager to communicate all he has learned and figured out.  Whether what he writes is correct or helpful, I can't say, but it is interesting and thought-provoking.

I mention him because the treatment approach your doc seems to be recommending is, I think, discussed in Rosner's book 'The Top 10 Lyme Disease Treatments:  Defeat Lyme Disease with the Best of Conventional and Alternative Medicine -- The Practical Guide to Understanding Modern Treatments and Building a Comprehensive Treatment Plan."  Long-winded title, I know.

The forward to the book is by James Schaller, MD, who is one of the longtime docs in the Lyme field.

Chapter 1, 'The Antibiotic Rotation Protocol', sounds like what your doc is recommending, but Rosner also includes use of a Rife machine as part of his explanation of the approach, tho I don't know that it's necessary.  

(Rife is seldom mentioned on this MedHelp website -- it is a slightly mysterious approach to diseases of many kinds, invented in the early 20th century by a fellow named Dr. Royal Raymond Rife (!), in which mild electrical currents are run through your body at frequencies which are supposed to kill specific bacteria.  ((I know, it sounds like a scam already.))  I never came to a conclusion on whether it might work, but Rosner talks about it in this book.)

Anyway, skipping over the Rife aspect, you might, if you want to read up on the antibiotic rotation approach your doc seems to be taking, take a look at this book.  I got it off Amazon, and you can see snippets of it there, I think.

It may make you feel easier to know also that Ch 10 in the book is about the importance of magnesium in dealing with Lyme; I too take it everyday, and it does help me and really helped when I was very ill with Lyme.

You can also google/search for Bryan Rosner and see what he's saying on these topics if you are interested.  He makes an effort to include all points of view and even stuff that seems totally wacked out, but I appreciate that because anyone dealing with Lyme is already on the frontiers of medicine.

Rosner is clearly a bright guy with an inquiring mind, and he brings a lot of stuff to the table.  Whether it's worth anything is up to the reader to decide.

So with all those warnings, I'll leave it there.  :)   Strictly for what it's worth.
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1763947 tn?1334055319
I am starting on a protocol that  I read which is changing orals every 2 weeks and then on nothing for two weeks. I will try that a couple of months and if nothing then start IV's. I take many natural supplements, like magnesium which many Lyme people need. When I was in the hospital recently, my labs came back that I needed magnesium so I take that and some more that a Dr in Houston, who has the neurological symptoms as I do told me to take. I was diagnosed with Lupus, but I am sure it is the Lyme like so many others have. I was told to take steroids and that Dr told me never to take steroids with Lyme. He was right, when I got out of the hospital, I read it.
So many choices of what to try, we can only do the best that we can do and hope that is works.
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Avatar universal
Mine is a big believer in IV abx, but then he gets mostly late stage patients when entrenched disease, like me. There's a doctor near me who will treat Lyme with orals only, and if you're just not getting well on them, then you have to go find one who will do IV.  I concluded I'd rather do up to a year of IV and get it over with than spend the next 4-5 years on orals trying to kick it. I want to be aggressive and get well as fast as I can. (I've had it over 6 years, with lots of neurological and GI symptoms.)

I think some doctors are just not comfortable with prescribing IVs, don't know how to monitor it, or perhaps don't want to come under scrutiny for prescribing more than a month of it. I'm avoiding the IV for now by doing intramuscular shots.  It's a big, nasty looking needle, but my husband has no trouble giving them to me.  We've learned to ice the area really well first so it's good and numb, and then I don't feel it.  Also, a hot pack afterwards for 1/2 hour ensures no lingering soreness.  I hear the drop out rate on the shots is high, but I would guess that's because they didn't figure out to use the ice & hot packs.  So far, it's working, so I'm going to stick with the shots as long as I can to eliminate or minimize IV time.
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1763947 tn?1334055319
That is good because I am no orals and rather not do the IV.
Thanks again
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Avatar universal
It's my hazy understanding that some of the early aggressive treatments for Lyme used IV, and some docs still use that approach if they think it will be more effective in a particular patient, perhaps one who didn't progress well on oral abx.

Also, because IV needs more close attention due to problems that can arise from having a needle in your arm for so long (possible infection, I think), many LLMDs went to oral abx when over time it became clear that oral abx were -- in most cases -- as effective as IV.  Remember, this is still a developing area of medicine, no cookie cutter treatments.

Some docs still lean toward IV, but I think most will often at least start on oral abx, and only if they are not kicking the bugs, then consider IV, which is expensive and has the possibility of complications from infection by the needle in the arm.

My LLMD is very well known in ILADS, and he never mentioned IV to me, and I did just fine.  In fact, if an LLMD recommended IV to me, I'd want to question him/her very closely about why not oral abx at least for a trial, to avoid the possible problems of IV.
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