oral vs. IV abx for Lyme?

[Nell2]

Good morning mates,

I’ve been seeing Dr. J’s PA since July, and on pulsing high-dose abx since August. The herxing/detox was horrible in the first months. Really horrible. But I did start to have some good days here and there, after she switched me to a Babesia protocol in October. I had to take December off to try to get heart irregularity under control, but have been back on abx since January.

I’m just…not improving very much. My main symptom is fatigue. I spend most of my time in bed — sometimes I have enough energy to run an errand or drive my kids somewhere, but if I cross the invisible line, even by talking to friends for too long, the next day I can hardly get out of bed at all. I’m doing 2 weeks on/1 week off cycles, and the weeks on are still pretty bad with a lot of nausea and weakness and just overall feeling rotten. The off weeks are not nearly as bad, but more like how I was before starting treatment — tired, unmotivated, blah.

There have been some real improvements though — no joint pain at all, and headaches mostly gone. So that is huge! But you guys will understand — I’m so anxious to get my life back. The slowness of progress is making me crazy.

After reading in Cure Unknown that LLMDs are hesitant to prescribe IV abx because of political pressure, I’m wondering if I should push for them? How long do you guys think I should give oral, and how much improvement should I expect to have by this point, 7 months in? I know these are sort of impossible questions to answer! But just going on your experiences I’m interested in what you think.

Second question is about cost. Can anyone give me an idea of how much IV abx cost per month? My insurance is not terrific and I’d like to know what I’d be in for money-wise.

Thanks for your thoughts!

Nell

[Maz]

@Nell2 wrote:

I’ve been seeing Dr. J’s PA since July, and on pulsing high-dose abx since August. The herxing/detox was horrible in the first months. Really horrible. But I did start to have some good days here and there, after she switched me to a Babesia protocol in October. I had to take December off to try to get heart irregularity under control, but have been back on abx since January.

My main symptom is fatigue.

I’m doing 2 weeks on/1 week off cycles, and the weeks on are still pretty bad with a lot of nausea and weakness and just overall feeling rotten. The off weeks are not nearly as bad, but more like how I was before starting treatment — tired, unmotivated, blah.

There have been some real improvements though — no joint pain at all, and headaches mostly gone. So that is huge! But you guys will understand — I’m so anxious to get my life back. The slowness of progress is making me crazy.

After reading in Cure Unknown that LLMDs are hesitant to prescribe IV abx because of political pressure, I’m wondering if I should push for them? How long do you guys think I should give oral, and how much improvement should I expect to have by this point, 7 months in? I know these are sort of impossible questions to answer! But just going on your experiences I’m interested in what you think.

Second question is about cost. Can anyone give me an idea of how much IV abx cost per month? My insurance is not terrific and I’d like to know what I’d be in for money-wise.

Hi Nell,

Parisa can probably give you an idea of cost for the longterm IVs used in Lyme treatment, as her hubby had been on a few different IV abx. I think Dr. J is one of the few LLMDs who is using IV clindamycin, isn’t he? However, I don’t think it is being used in the same short spurts that Brown used it in. Normally, longterm IV rocephin is the abx of choice for Lyme, but this comes with its own set of issues, including the potential for gall bladder problems (which is why Actigall is normally also prescribed). Having spoken with my LLMD about IV abx, he is not convinced that they are a panacea in every situation. Clearly in some cases, like Parisa’s hubby, who was pretty ill or in cases of severe neuroborreliosis, the IVs can be life-saving, but it really has to become a risk/benefit calculated decision as there are serious risks that come with having ports and the longterm IVs. As you’re clearly improving on orals alone, it may not be a risk that is worth taking?

Believe me, I know exactly what you’re going through and my first year was a complete nightmare, too. I did the two week on/1 week off protocols in the second half of my first year and they were absolutely murderous. The whole idea is to scare out those bugs and then to keep hitting them, so it feels like you’re constantly herxing….and one is! However, I always felt much better on continuous dosing, once past the initial herxing of a new abx protocol. I’ve been on orals for 4 years and they’ve worked fine…the main focus for me being on maintaining gut health and balance and detoxing.

The chronic fatigue was horrible for me, too, but did start lifting in that first year. I didn’t know enough about detoxing then, but it sure does help…what are you doing in the way of detoxing and special diet, Nell? Do you have a FIR sauna you can get into at home?

[nspiker]

Hi Nell,

I guess the good news is that you’ve had improvement with symptoms. I second what Maz said, what are you doing for detox? I have not had the debilitating fatigue, but I do know that detox is essential to keeping the toxins from recirculating in your body. Whenever I am feeling lousy, that is my first go-to.

I don’t know that IV’s are any better than orals, unless you have to cross the blood-brain barrier for neuro-lyme. The only IV’s I’ve had are IV clindamycin, through Dr. F. All of my lyme treatment has been oral. Some insurance companies will not pay for IV’s. Medicare, for example will not pay. I have BC/BS, and it cover’s in-home IV’s. It covers the cost of the infusion service and the medication. It depends on your individual insurance, how it is coded, and what they cover. I was so excited to start the IV clindamycin, thinking it was better than anything oral. To be honest, fifteen months into it, I am so sick of the invasion on my life. It’s a lot more work, and a big hassle to do IV’s. I would never want a port unless it was necessary.

You might want to ask your LLMD what you could do for fatigue. Have you tried LDN? How are your Vitamin D levels? Supplementing with high-dose Vitamin D, for me, is a big boost. It seems like you are moving forward, but I totally get how frustrating it is when you just want to be well! It’s a slow process…

nancy

[Parisa]

Hi Nell,

Oral vs. IV is not an easy decision. In my husband’s case, he wasn’t making any improvement after 8 months of orals and also he wasn’t tolerating them anymore.

My husband had a central line in for 20 months and we rotated in a whole slew of antibiotics: IV Rocephin, IV Flagyl, IV Zithromax, IV Clindamycin, IV Ertapenem. He also rotated in oral Malarone, Qualaquine and bicillin injections and he was getting IVIg which he continues to receive to this day.

I’m sorry I don’t really have a cost figured out for IV antibiotics as we actually got all of our IV antibiotics covered, it was the Babesia medications (and all those $upplements!)that we couldn’t convince the insurance company to pay for.

Perhaps bicillin injections might be something you could try and if you feel you’re still not making the progress you would like you could then move onto IVs.

If you are doing 2 weeks on, 1 week off, then I assume you are treating Lyme only? Babesia treatment shouldn’t be cycled in and out. Are there plans to go back and treat for Babesia again?

[Nell2]

Maz,

It helps more than I can say to hear that you struggled for this long too, and came through it doing so well. As I guess is true for most of us, one of the difficult parts is having to give ourselves meds that in the short-term, make us feel so terrible. It gets hard psychologically to hold on to the idea that feeling terrible is the road to getting well.

For diet, I am gluten/sugar/soy/caffeine/alcohol-free. I eat mostly whole foods, kind of a Weston Price sort of diet, with raw milk and as much fermented foods as I can.

For detox, I’m taking methyl folate, trying to drink decaf green tea every day, I do the lemon-olive oil drink when I’m not nauseated, Epsom-hydrogen peroxide baths when I’m in bad shape. I can do a regular sauna at the health club, but it’s not FIR and I don’t manage to get there very often. Are there benefits to FIR that a regular sauna can’t match? I’ve read some of their literature but I’m wondering if anyone has tried both.

Do people have that portable sauna where you zip yourself in with your head poking out? It IS kind of appealing!

Dr. J told me he takes out a LOT of gall bladders. I really want to hang on to my body parts, so anything that increases the likelihood of losing my gb is a big negative. I’ve got stones now per ultrasound, but no infection, so I’m already on thin ice there.

Nancy,

I’ve been on LDN for a couple of years and currently take 5,000 iu of vit D a day. I am really looking forward to summer and sunbathing. Is it true for you guys too, that symptoms get worse in the fall and yet more worse in the winter, and then better in the spring? That’s been my pattern for years now.

Am I missing any good detox methods?

Parisa,

I am doing Babs treatment, and it’s cycled. Can you explain why it shouldn’t be? Currently Mepron, doxy, zith, MWF 2 weeks on/one week off. On the second week, Flagyl on Th and F. Did a month of artimesinin but couldn’t tolerate it.

Thanks for the insurance info. Maybe I’ll get lucky, if I get to IV at some point.

Thank all of you so much. It’s easy for me to forget about the improvements and start feeling desperate when those waves of nausea hit, or when just looking at the pill bottles that have taken over my room make me heave. Just reading your calm clear voices helps. My brain function is pretty compromised at this point and it can be a real struggle to make sentences and have any kind of clarity about much of anything. 😕

Again, thanks!!

Nell

[Parisa]

Nell,

I’ve been going through James Schaller’s Babesia book trying to see if I can find a reference to pulsing and I can’t find a specific reference. This just seems to be knowledge I picked up over time from Lymenet and perhaps my husband’s LLMD??? I believe the thinking is that unlike Lyme which has a long cycle Babesia reproduces quickly. Any lapse in treatment gives it a chance to spawn more organisms and those many times can then be resistant to the medications being used. If you can tolerate it, I would seriously look into taking the Mepron daily and then if they want to pulse in other meds they could pulse the Zith, Flagyl, Clindamycin, etc.

[Author]

Posts