posted
IV versus Orals Antibiotics � I am new to Lyme, although not new to being sick. Been essentially bedridden for nearly 6 years. My symptoms are pretty much all neurological, with the worst symptom being severe dizziness in the form of disequilibrium, making me unable to walk without a walker. Other symptoms include migraines, fatigue, flu like, brain zaps, occasional blurriness, severe visual hypersensitivity, and the list goes on. I would do anything in the world to regain my life, and I want to make the �correct� decision regarding treatment. I�ve been to two LLMDs, and one said that I should work up to high doses of amoxicillin to start as high doses pass the blood brain barrier and I am assuming he will add other meds for coinfections, cysts, etc., whereas another doctor was adamant that I will only get well on IV. Both well-respected LLMDs. I want to, obviously, survive the treatment, but want to do anything to get well. Any thoughts? (Btw I'm also doing some things to detox, etc.) Thank you so much!
Posts: 138 | From Connecticut | Registered: Dec 2012
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posted
According to Burrascano guidelines, if someone is sick for more than one year, has many neurological issues, has had steroid involvement or is over 60 years old, IV is the course he would suggest.
You sound like that is what is warranted but that is a decision only you can make.
I was extremely sick for a long time before we figured out what was wrong and I had neurological issues and steroid involvement. I couldn't get out of bed. I am on disability. Migraines and pain were horrible and I was not sleeping.
I started out with orals for 6 months with zero improvement. I also had many gastro issues too which included malabsoption of anything so it made sense to try IV.
I went on IV last February and it made a huge difference for me. I am slowly getting better.
My husband has Lyme too but at the time I was sicker than he was so I went on IV first. He has heart involvement and is not improving on orals so he just started IV too. He already has a pacemaker/defibrillator for arrhythmia's.
We will get our life back, but it will take time. I don't regret going on IV at all. We both have ports so we can shower fully 3 days a week.
Some people can respond well to orals, but some others can't tolerate those high doses of abx orally.
If you can afford to do so, I would start with IV if I were you. It will get you out of bed.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Faithful - thank you so much. that makes good sense. it herx not necessarily stronger on IV? I will do anything to get my life back. you mention shower 3 times per week. with port, you can't shower daily? I would prefer port to picc
Posts: 138 | From Connecticut | Registered: Dec 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
good answer faithful. i went to an llmd for iv. my ins wouldnt pay. he put me on highdose orals...it took me awhile to ramp up -had to learn how to control gi sx...and he was very picky about figuring correct doses by testing me a special way.
it took a year to get to full dose. then did them a year. then pulsed a year. and then had to clean up=detox etc
i got well enough to teach for 20 yrs before something different than lyme disabled me
i had a friend who wanted to get better immedeatly-she pushed for iv...had a major problem with infection - almost died and ended up having a disabling surgery.
i have heard llmds say it is best to go oral if you can to prevent possible infection problems.
i have also heard of many on iv not getting better.
the above reasons by dr b mean a lot. or if you are allergic to abx or have severe gi sx that cant be controlled...
but it is important to know the reasons to not do iv lightly
and please make sure you understand the new thinking about the bugs being too smart to be killed by abx...
until now i have always encouraged ppl to do as many abx as possible in the beginning...now i am beginning to look at it differently.
good luck with your fight against this disease
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
My daughter was sick for 11 years before diagnosis at age 16. She tried orals for almost 2 years with very little improvement. We spent 10's of thousands of dollars testing and for LLMD and supplements.
Last August she had a CVC placed and began IV. When she started she was bed bound.
Her Dr pulses the IV with treatment m,w and f. On non treatment days she infuses Lactated ringers to help with detox and dehydration.
So 5 months later she is driving, applying for jobs and is doing 100% better. She is not 100% per-illness and still has symptoms. But for the very first time since diagnosis she is getting better and I believe that she will be 100% within the next year.
If all goes well with the next round of meds she will be having her CVC pulled and will manage the remaining symptoms with orals.
Our insurance paid for all orals but we didn't submit the LLND bills as we were trying to stay under the radar. We have been paying out of pocket (say goodbye college fund) and IV is expensive. We travel across the country so our expenses are even higher. Just for the 9 months of IV we are looking at $35,000. Let alone flights etc....
All I know is that IV is working where nothing else would. Best of wishes to you and yours and prayers for wellness!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
Thank you Ipkayak - what are your new thoughts about antibiotics ?
Posts: 138 | From Connecticut | Registered: Dec 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i still think a new lyme pateint shoud hit the bugs hard with all types of abx in an organized manner (like dr b says or experienced llmd) first
but-if you dont see herx or improvement (i still dont understand why some have to herx and some just get better-i saw this with my kids) within a reasonable time -a few months...then switch protocols...then a few months on each
and if there is no change/improvement in a year
then...maybe iv...but the new thinking is the bugs are just too smart-all of them, bacteria, virus, parasites and they all change depending on what happens to one...they have figured out the abx
my llmd has told me for awhile...when a person doesnt respond or a person feels better on abx and crashes everytime they try to get off...then the bugs are smart adn winning
he says it is harder for the bugs to figure out herbs...use herbs
now...i have also found out it is very important you get good quality-you must research and find the ones that are pure and absorbable...it isnt easy
i am going to pm you the 2 docs i would read about and follow
remember i am not a doc...i am old...i am foggy on and off...but i do believe there is some good to what i say
alot of the new thinkign is in an artical in publichealthalert.org that all can get free online
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Ports are amazing!! I've had two now and can't imagine tolerating the picc. Ports are longer lasting, and if you have to take a break from treatment, you deaccess and feels completely normal.
I've had a port for a while, but I really have no pain with the port. I access it myself, and it doesn't hurt.
You can use aqua guards to shower everyday. I'm a little obsessive about being clean when I'm able to.
I recommend IV's! With my GI sx and severe neuro involvement, I couldn't do it without IV's.
Good luck!
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
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posted
I did IVs for about a yr then got a staph inf, had the line removed From what I have seen over the yrs, one does feel better on IVs but there comes a time you have to stop ....inf, ins stops paying, etc Then most relapse in time after they stop and loose their gains
Just be careful, watch for inf You will feel better on IVs like I did. My opinion ....good luck
Posts: 315 | From USA | Registered: May 2005
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posted
I got much better on IV Rocephin with a port. I treated for 6 months until I had to pull the picc line because of infection. This was after a year of multiple oral antibiotics which onky made me feel worse. I relapsed after a time and then did IM Bicillin for 8 months with Flagyl for the Lyme. The IM Bicillin worked the best for me. Good Luck-if I were you i woulk def. try the IV first before orals.
Posts: 256 | From long island, new york | Registered: Feb 2008
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posted
Thank you
Posts: 138 | From Connecticut | Registered: Dec 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Faithful, did you need a nurse to do anything for your IV? You said you accessed it yourself. Could you explain what that means and what is the deal with the needle?
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I had a port put in and used a nurse to put the needle in weekly for a while. A port is under the skin and is put in surgically. You are less prone to infection with a port and they are less bothersome with activity.
So a Huber needle goes into the port once a week so I can infuse for 5 days and then I take it out on Friday morning when I am done.
I had to learn how to put the needle in when I went on vacation late last summer. The other reason for learning is that I got some nurses that had no clue how to put the needle in correctly and it caused me some problems, one which sent me to the hospital.
I don't use nursing care anymore. I just access once a week, use a pump with a syringe of Clindamycin, infuse 5 days and pull the needle on Friday morning. I do a hand shower on the days the needle is in and put press n seal over my port.
I can take a real shower on Friday, Saturday and Sunday. Also, this allows me to use my sauna those three days too.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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