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Should or shouldn't do IV abx?

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Posted 4/21/2018 7:34 PM (GMT 0)
Hi! If anyone could help me decide on whether or not to go the abx route! I'd be very grateful smile

I noticed a variation on the classic lyme rash two years ago and had a fever at the same time (neck pain)... went to the doctor's and five weeks after seeing the rash got antibiotics. However, my doctor gave me a low dose of doxycycline (100 mg per day where recommended is at least 200 mg) for ten days.
Also, at the time I was already suffering a severe burnout and so my immune system wasn't at its best...

Since then I've never recovered from the burnout and developed some extra symptoms, but fatigue and sleep problems have stayed consistent. I did get much worse after the rash appeared, fatigue wise, and since then developed these sort of 'attacks' during which my brain feels inflamed / really weird and I start shivering because it's so uncomfortable. I have recently been tested again for Lyme and tested positive on an LTT test (in Europe).

My doctor now wants to give me antibiotics intravenously because there could be a chance that the lyme is still active. However, I really don't want to do it if the lyme is already gone from my body and all of my symptoms are still from burn out or chronic fatigued syndrome or something like that, because I'm worried that high doses of abx will take a heavy toll on me body. I really don't want to get any worse at this point!

Does anyone have some sage advice for me? :p
What are the odds that the lyme survived the first course of antibiotics and is the reason that I never got over the burnout fatigue/sleeping problems?
And does anyone have experience with the toll that IV antibiotics can take on your body?
Posted 4/21/2018 7:41 PM (GMT 0)
If you waited 5 weeks after seeing the rash to get antibiotics, there's a strong chance that Lymes is still active in your system. You should get tested for the standard coinfections as well, ticks carry dozens of diseases. IV antibiotics could be a good start, if Lymes is what is causing your problem, but treatment for an infection years old could take a long time. Some people recover in a few months of antibiotic use, other people require a year or more.

First, have you ruled out all other causes? There are a lot of conditions that cause symptoms similar to Lymes. Since you had the rash I'm betting that's what it is for you, but that doesn't mean it couldn't be something else.

If you do have Lyme's you're going to have to see an LLMD, they'll know the most modern treatments. Unfortunately, that treatment will likely be expensive, but if it saves your life it'll be worth it. I suggest reading the stickied post: New to Lyme's? Start Here! pinned to the top of the forum, it will answer a lot of questions about the disease.
Posted 4/21/2018 7:47 PM (GMT 0)
Thanks for your reply! I have ruled out pretty much everything else that could be causing this, I've seen a couple of specialists. I have a LLMD who is still unsure of whether the Lyme is active or not. He wants to treat with antibiotics , but I'm just a little hesitant if I should do it because my body is already pretty weak...
Does it take months on antibiotics to see improvement? Or can you start to see improvement after a couple of weeks?
Posted 4/21/2018 7:55 PM (GMT 0)
It's different for everybody. If your LLMD is unsure whether or not the disease is active in you, I'm not sure how much I'll be able to help, he knows your symptoms much better than I do. I will say this: I've been on antibiotics (oral) for 3.5 months and felt significant improvement within 1-2 months. I'm not back to 100% yet, but there's definitely a big difference.

I wish there were better tests for this sort of thing, we all do, but you'll have to make the call. My advice is: A month or two of antibiotics won't do you any real harm if you don't have the illness. It won't do your body any favors, but it's not the end of the world. Tuberculosis is routinely treated with 9 months of multiple kinds of antibiotics, for perspective. If you don't notice a difference after a month or two, you could stop and look for alternate explanations or treatments. Knowing what you've told me, that's what I would do. Then again, I'm biased because antibiotics have helped me so far. I hope you feel better, whatever you end up choosing.
Posted 4/21/2018 9:01 PM (GMT 0)

Lizzy62 said...
Hi! If anyone could help me decide on whether or not to go the abx route! I'd be very grateful smile

I noticed a variation on the classic lyme rash two years ago and had a fever at the same time (neck pain)... went to the doctor's and five weeks after seeing the rash got antibiotics. However, my doctor gave me a low dose of doxycycline (100 mg per day where recommended is at least 200 mg) for ten days.
Also, at the time I was already suffering a severe burnout and so my immune system wasn't at its best...

Since then I've never recovered from the burnout and developed some extra symptoms, but fatigue and sleep problems have stayed consistent. I did get much worse after the rash appeared, fatigue wise, and since then developed these sort of 'attacks' during which my brain feels inflamed / really weird and I start shivering because it's so uncomfortable. I have recently been tested again for Lyme and tested positive on an LTT test (in Europe).

My doctor now wants to give me antibiotics intravenously because there could be a chance that the lyme is still active. However, I really don't want to do it if the lyme is already gone from my body and all of my symptoms are still from burn out or chronic fatigued syndrome or something like that, because I'm worried that high doses of abx will take a heavy toll on me body. I really don't want to get any worse at this point!

Does anyone have some sage advice for me? :p
What are the odds that the lyme survived the first course of antibiotics and is the reason that I never got over the burnout fatigue/sleeping problems?
And does anyone have experience with the toll that IV antibiotics can take on your body?

Well, you were under -treated and 200 mg per day is still not enough - it should be 400 mg daily and also 10 days isn't nearly long enough. Should have been minimum 6 weeks or until symptom free plus 4 weeks.
So you do need more treatment - but it doesn't necessarily mean IV abx.
You weren't symptom free.

IV abx are easier on your GI, but there are some risks and inconvenience with them.

Is this a LLMD? Or is it the same Dr. who undertreated you the first time?

EDIT - I just read your second post and you did say you have a LLMD.
Posted 4/21/2018 9:08 PM (GMT 0)

Lizzy62 said...
Thanks for your reply! I have ruled out pretty much everything else that could be causing this, I've seen a couple of specialists. I have a LLMD who is still unsure of whether the Lyme is active or not. He wants to treat with antibiotics , but I'm just a little hesitant if I should do it because my body is already pretty weak...
Does it take months on antibiotics to see improvement? Or can you start to see improvement after a couple of weeks?

Does your LLMD know about the short duration and too low dose of abx when you first treated?

I'm wondering if maybe you need a different LLMD if he is questioning if lyme is still active.
If you do stay with him, Maybe talk to him about trying orals first.


Yes it can take months to see improvement - it was for me. My symptoms ever-so-slowly have dropped away....over 3 1/2 years treating...and counting.
Posted 4/22/2018 3:51 PM (GMT 0)

Girlie said...

Lizzy62 said...
Thanks for your reply! I have ruled out pretty much everything else that could be causing this, I've seen a couple of specialists. I have a LLMD who is still unsure of whether the Lyme is active or not. He wants to treat with antibiotics , but I'm just a little hesitant if I should do it because my body is already pretty weak...
Does it take months on antibiotics to see improvement? Or can you start to see improvement after a couple of weeks?

Does your LLMD know about the short duration and too low dose of abx when you first treated?

I'm wondering if maybe you need a different LLMD if he is questioning if lyme is still active.
If you do stay with him, Maybe talk to him about trying orals first.


Yes it can take months to see improvement - it was for me. My symptoms ever-so-slowly have dropped away....over 3 1/2 years treating...and counting.

Hi! Thanks for your reply smile

Actually, my LLMD did say I was under treated and that it was more likely the initial treatment did more harm (resistance) than good. He is willing to treat with oral antibiotics, but I have the option to start with a short period of IV antibiotics.

I was kind of hoping that an aggressive start of treatment through IV would scare the lyme out of its mind so that I wouldn't have to treat for more than a month, lol. But that's probably wishful thinking on my part since most of you have needed to treat for far longer!

My only concern is that since my main complaints, fatigue and sleep problems, can be just as easily explained by cfs or burn out, there is a small chance that the initial tratment did take care of the lyme and that lyme therefore isn't to blame for my inability to get better.. But I'm probably going to have to take a chance on it, if the abx really can help that would be worth it smile.
Posted 4/22/2018 9:10 PM (GMT 0)
just to respond to the initial question about IV vs oral. No i do not think IV will help you more than oral. What helps is *take the antibiotic for many months* until you are clear of symptoms. It will take at least 6 months and possible up to 1-2 years. The problem is not the IV, it's the length of treatment.

You can very well get much better by using oral antibiotics, but
- you need to choose antibiotics that penetrate brain
- you need to cover two major coinfections that can keep u ill: bartonella and babesia. These will require extra meds
- you need to take this cocktail for 6+ months, as i said going all the way up to 2+ years if necessary.
- you need to take very hi quality probiotics from at least 3 vendors, with 10+ billion CFU every day, to prevent wrecking your gut with so many oral antibiotics
- you need to test your liver levels, TSH, blood count, electrolytes , urea and kindey function - every month to prevent potential organ damage from abx and to know if u need to take a break to recover


that's about it ... i would not get so much focused on the IV. I know the fact that there is a needle involved and there is some drama into putting antibiotics directly in your blood sounds like you are doing something important that will lead you to a cure, but all studies show IV is not better than oral antibiotics, and the only thing that makes a difference is number of months and taking more than one antibiotic, so combining them based on schemes LLMDs have. You need a good lyme doctor to help you get this sorted out.

stopping earlier will mean relapse, spiraling down with symptoms and continuous misery.
Posted 4/22/2018 9:23 PM (GMT 0)
Just want to add that it can take longer than 2 years of treatment. Many people on this forum are past the 2 year mark.

LLMD J does recommend IV abx for certain situations. He states about 20% he recommends but only about 10% actually do it due to cost/inconvenience.
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