I`ve been reading and hearing about intravenous antibiotics being more successful and faster that oral antibiotics in several places, but I was wondering if anyone could share their experiences with/knowledge of both? I was hoping to hear pros and cons and, if possible, stories from different people.
Based on what I`ve read everywhere (and heard from various message boards), I feel I would like to try IV antibiotics if offered as an option (ultimately up to the doctor of course), but I was wondering what side-effects / reasons there would be to go with oral antibiotics instead?
I understand it is more complicated than that (different types of antibiotics, different combinations depending on co-infections, etc), but I just wanted to get an idea of whats involved in both.
Thanks a lot!!
--MDL
Posts: 18 | From Canada | Registered: Aug 2009
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Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I wouldn't know about IV because I've never had it. I am affected from Lyme and Co. in various ways.. my CNS, heart, joints, muscles etc. Everything seems to be affected.
I've been on orals for just over a year now and I would say I'm 80-90% better than I was before I started treatment. That says a lot because I was pretty bad off before my diagnosis. I am lots better and that is on mono therapy with the abx switched to something different every few months.
That said, when I have stopped my abx to take a break my worst symptoms do start to return. I am not completely symptom free when on abx, but very functional. I've been very blessed.
I've had Lyme for probably my whole life (I'm 32) and my twin sister,husband and 3 kids have it as well. I have Lyme, Mycoplasma, RMSF and even though tests were neg. for it..my Dr is pretty sure I have Bart as well. I also have antibodies to West Nile virus.
My LLMD is of the mind that "slow and steady wins the race". My recommend treatment right now is looking at 4 yrs of abx therapy. My bacterial load was so very high, I don't think I could have handled IV if I wanted to. But in the future, I wouldn't necessarily be opposed to trying it if we could afford it (which is doubtful with my whole family being affected). For me, I am happy enough with the results from just orals.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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quote:Originally posted by abigail: I am on IM cefotaxime. I guess I'm in the middle of the road. I don't want to babysit a line.
I personally would like to have PICC (or even better - port) .Since it looks much less hassle then do IM. And you can use lots of IV forms (which are much more effective -so you can cut the dosage and save liver/kidneys)
Posts: 856 | From MA | Registered: Jul 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
I have had 2 PICC lines and currently have a
port which isn't accessed and have to say that
after 2 years trying 7 different IV ABX I find
that Oral Mino has been the best for me in
combination with other orals. I am sure that the
IV ABX that I was on when I was first diagnosed
helped, but I have to side with the orals right
now. Just my opinion......
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Blood clotting can be another issue when moving to IV so you have to make sure you're not susceptible to clotting problems, which can lead to serious sides...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Well, I don't understand PICCs or ports. Sometimes, they are buried under the skin, right? And, I don't even know if you administer the meds yourself. It would be a disaster to have it get infected or have it clot. The IM is not a big deal.
-------------------- Dying is easy. Living is harder. Posts: 257 | From owensboro kentucky | Registered: Mar 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
I've done the IM Bicillin shots and they were a breeze. To be honest, IV scares me a little....
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Excuse my ignorance, but what is "IM" exactly?
Posts: 18 | From Canada | Registered: Aug 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Skinny, it is intramuscular injection
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
The IM med most commonly used by Lymies is Bicillin LA (Benzathine Penicillin) A lot of people have found it very helpful. Do a search of this site for people's comments over the years.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
IckyTicky, a four year plan? Wow, that's a long road. Low and slow is nice in concept, but how can a LLMD say it takes four years? Most people including myself would be wiped out financially and job wise.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
My doc says 2-3 years, but I don't believe him. I bet I will be like the guy in Under Our Skin who has been fighting for 50 years. Remember him?
-------------------- Dying is easy. Living is harder. Posts: 257 | From owensboro kentucky | Registered: Mar 2008
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posted
Well...I'm 17 months on orals, improvement is maybe 10%...on a good day. So, at this point, a 4 year plan sounds pretty good! Yes, and $ wise, how do I continue indefinitely, especially when improvement is very questionable? Maybe I need IV, I am currently waiting for my EMEM Rife to arrive...what to do?
I have considered re-posting my Western Blot as I start to wonder. At the same time, I am positive for ALL co-infections, have + Lyme-specific IGM/IGG bands and no other organic cause has been found. Not to mention I have symptoms right on target with LD.
I do feel the stress of wondering if I'll just be like this forever takes its toll. I am plagued with awful neuro symptoms - it's a nightmare.
Sometimes I just want to give up. So sick...and trying to make decisions around what to do is really overwhelming...Tickssuck
Posts: 566 | From West Coast | Registered: May 2008
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Low and slow is nice in concept, but how can a LLMD say it takes four years? Most people including myself would be wiped out financially and job wise.
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