I have some questions about switching antibiotics. Here's some background information....

I've been on antibiotics for Lyme for 2.5 years. I've made the most significant improvements since last summer. The medication combination that seemed to really help me was IV immunoglobulin therapy along with Plaquenil and IM Bicillin. After being sick for over 12 years and missing most of the "in person" schooling of high school and my college years, I have been taking courses full-time on campus this semester. It's a huge change, after spending so many years primarily in bed, unable to leave the house.

However, I'm looking at possibly changing antibiotics and am hoping for recommendations. The reason for the change would be to focus on treating the neurocognitive aspects of Lyme.

Where I am really having trouble is with spatial intelligence. I worked hard to learn the physical coordination for driving and passed my road test last summer, only to find that I can't handle driving because it's so mentally exhausting. I get lost close to home (on routes I've been on repeatedly), get confused about how the lanes line up for turns, momentarily forget what lights and signs mean, and am so frazzled by the hard work of driving even with a helpful "co-pilot" next to me that a 5-minute trip is nerve-wracking and exhausting. I don't drive at all now, because I feel so unsafe.

I used to be the person in our family who handled all of the maps and navigating, but now my spatial inteligence is awful. I think it must be from the Lyme, because I wasn't like this as a young adolescent.

My Lyme doctor had me stop the bicillin shots and switch to biaxin, because sometimes biaxin and plaquenil are good for neurologic Lyme. That change went terribly for me. I lasted just under two weeks, and found that my ataxia, movement disorder, muscle weakness, visual symptoms, headaches, lightheadedness, sore throat, joint pain and low grade fevers returned. I made the change just in time for college mid-terms, so it has been a rough couple of weeks.

I'm going to see my Lyme doctor at the end of this week. I e-mailed him to say that I thought I'd like to go back on Bicillin shots, since they helped so many of my symptoms. He replied that we could talk about this more at the appointment, but he is still thinking of taking me off of bicillin.

I am wondering what else he might recommend. I was on high dose amoxicillin a few years ago for the Lyme, with slight improvement, but nothing like the big changes on the Bicillin. I haven't done well with Biaxin or Zithromax. Doxycycline didn't have much effect when I took it a few years ago.

I have read of people using Ketek, but it contains lactose and I am milk allergic, so I'm very reluctant to go there.

Have any of you used oral antibiotics in combination with Bicillin? Or, did any of you stick with the Bicillin for over a year, to give your body more time to heal? I am wondering if perhaps the Bicillin will eventually help my neurocognitive problems, if I can be patient and wait it out.

Has anyone used any kind of rehabilitative services to re-learn how to do things like driving, despite the neurocognitive problems caused by Lyme? I guess I'm looking for anything that might help me be more independent!

Thanks for any advice you can offer

HudsonValleyGal

[This message has been edited by HudsonValleyGal (edited 15 March 2005).]

What I've noticed lately is that even if my whole body is sore and achy, my mind is usually clear, and I can think and get work done.

I've used bicillin alot too, and in fact am still on a little of it. It is really good at getting overall symptoms contained and the body feeling better. I don't think it can get into the brain enough by itself, though.

In theory and according to conventional wisdom, tetracyclines and penicillins are at cross purpose and not to be used together. In practice there is nothing conventional about this disease, and they seem to be somewhat complimentary, with the minocycline being primarily active in places where the penicillin does not reach.

A non-prescription thing that helps with the cognitive function is the nootropic supplement Piracetam, available here... (and a few other places)
http://uniquenutrition.net/

It is kind of a cognitive enhancer.

B12 injections along with the other B complex vitamins can do wonders for brain function and general nervous system health, if you have not already discovered them. Ask your Dr. for some.

We get depleted to the point of causing serious neurological damage while on long term antibiotics. The antibiotics tend to kill bacteria in our intestines needed to digest B vitamins, hence the need for the shots instead of just a pill.

I found that biaxin and plaquenil did nothing. The World Health Organization recently dropped plaquenil as a malaria treatment because most strains have become resistant. However, there are certain LLMDs who REALLY like plaquenil, and you don't want to push them away. So you might just want to ask about other, additional abx.

I also have found minocycline to be one of the few abx that will work. For me, however, it is too strong to take long term, except in small doses. If you try it, you might want to ramp up slowly, and balance it with other abx. For example, doxycycline.

I've been sick for almost five years, and abruptly started getting better after starting co-infection treatment.

Babesia: 10ml mepron 2x day, with artemisinin and ketek if you can tolerate it

Bartonella: levaquin 500mg/day, doxycycline 400mg/day

Please, please, one person's subjective impression: if you ask for these abx, do not ask for them all at once. Take it very slowly. And please get better!

Let me also tell you that the worsening after plaquenil is expected in your situation. You have bacterial cysts loaded with biotoxin in your body. They were kept in order with your shots but now plaquenil opens them up.
Sometimes you may want to do it on purpose to get rid of them but as you have noticed it is painful and old symptoms come back. It is expected and eventually it will go away.
It is not a relapse in a way people refer to it.

Once you get through several months of treatment with plaquenil (and a hell of suffering) you will feel significantly better after such a therapy. It is good to take some other antibiotics at the same time that kill bacteria to kill bacteria that emerge from cysts together with biotoxin.

Question is if you want to do it now when you are at school. Perhaps there is a better time for opening your cysts and for now you should stick to bicillin. If you stop plaquenil you will likely return to normal or better within plus minus 10 days.

Thanks so much for the input!

I didn't know about minocycline. I just looked it up and was glad to read that it doesn't contain milk, so it should be OK for me in terms of food allergies.

I probably could have been clearer about my antibiotic and plaquenil history, but didn't want to bore everyone with the details .

I got sick in 1991 and started antibiotics in 2002. I was on various combinations of oral antibiotics (plus 8 weeks of IV rocephin) from Sept 2002-June 2003.

In June 2003 I started working with my current Lyme doc, a neurologist, and I've been on plaquenil most of the time since then. I get worse when I stop taking it (more movement disorder episodes, more muscle weakness and ataxia) so I assume I will stay on it.

I took the plaquenil along with biaxin from June 2003 until Feb 2004, but had really gone downhill that winter and didn't think the medication combination worked for me any more. It was in Feb 2004 that I started on the Plaquenil and Bicillin combination and first started to really be awake a lot in the day, be able to exercise some, and start building up my stamina. It was a notable change.

Then, in summer 2004 I started on IV immunoglobulin therapy and really got stronger. A major change was that my neurally mediated hypotension improved and I didn't need to take as much medication for that (I'd been on florinef, midodrine, and beta blockers for years).

I went to college part-time this fall and am full-time this term, finishing up all of the biology, wellness, and math prerequisites for nursing courses.

I wasn't sure if Bicillin helped neurologic Lyme. I'm grateful to hear about others' experiences with it. It's clear to me that it helps with my systemic symptoms and stamina, and that I've gone to pieces now that I've been off of it for a couple of weeks. It's helpful to hear about adding other therapies to supplement it.

James, am I right in thinking that you've taken Bicillin and Minocycline simultaneously? I'm wondering if that's something my Lyme doc might suggest. He's a neurologist so he's pretty attuned to the need to treat the neurocognitive aspects of late stage Lyme.

I didn't mention that I also do Vitamin B12 shots. I also take a multivitamin, Ca/Mg, probiotics, fructo-oligosaccharides, a good antioxidant complex, Coenzyme Q10, and B-complex. I'm on a restricted diet because of food allergies, plus know that fighting the infections stresses the body, so want to give it all the support I can.

Areneli, you're right, this may not be the best time for me to go through herxes! I signed up for a ridiculously heavy course load this term to increase the chances that I'll make it into nursing courses next fall. (If I don't make it into the classes, I'll have to wait a year to take them, and that would probably mean waiting another year to get married.) I've been worried about the impact of the stress on my health, but until the past two weeks was holding together reasonably well, considering everything I'm asking my body to do. I was having all kinds of symptom flare-ups and movement disorder episodes, and that was scary, but somehow I could still get to classes and do the homework. It was going off of Bicillin just before midterms that triggered this crisis.

I have an option to take an online class for 5 weeks this summer (or even to take NO classes, if that's necessary). So, the summer may be my time to adjust the antibiotics, when it is safer to do so. So much is riding on my being able to finish the second half of the term. I'll have more flexibility once I complete these classes and am guaranteed a spot in the nursing classes for the fall.

Thanks again for all of your input! It's so helpful to be able to hear about others' experiences.

A thought that comes to mind after reading your request and the responses is how extraordinarily diverse the treatment for lyme and co-infections tends to be because it is all so individual.

Also, I am always in awe of how marvelously resilient everyone is. Absolutely gorgeous, isn't it, this being human thing? Your story is an heroic adventure. You are a hero. Hurrah.

That said, while reading about getting lost driving, I had to shake my head. I once got lost going to physical therapy, for example, and I'd been going there for months. Had to write the directions very simply on a post it and put on the dash to protect me from myself. Funny, but exasperating, too.

I'm one of those folks whose brain improved on the flagyl/biaxin combo. Tough to stay on, but really helped the brain.

Am going on bicillin injections this week. Am starting because need to get back on a medicine, according to my doc, that helps with the lyme brain saga. If I get sore joints, we will add biaxin or zithromax.

Again, it's all so individual. I am always amazed by what helps one person and not another. That said, it's always good to ask the doc and figure out what works for you, especially since I'm not a doctor!

Oh, just reread your post. I asked the doc about "physical therapy for the brain". He suggested mind puzzles, the ones that are used for psychological tests. Help retrain the brain. Also, been listening to foreign language tapes. And trying to learn guitar. All use different parts of the brain, let other parts rest. Seems to help.

Art projects seem to help focus, too. Making jewelry (which I'd never done before) helps with focus. Also doing mazes and coloring mandalas seems good.

Don't know if any of this will help you, but here's hoping.

(I put this on the wrong thread if anyone wonders what I am talking about!)

About the magnesium... I take oral magnesium citrate, but have seen several mention taking Mg IM instead. I was just wondering what the reason was.

Is it to get a higher dose than is practical orally, or just because of intenstinal issues making a normal oral dose impractical?

I'm sure there is a good reason to put up with the extra discomfort and cost.

I saw my Lyme doc on March 18 and went back on IM Bicillin. I'm still on plaquenil, too. On March 25 I also started on minocycline, 200 mg/day.

The day after starting on minocycline I woke up with a low-grade fever. I was in bed all of that weekend and have been so spacey and out of it since then. My gait and balance are really bad again, and I've had quite a few episodes of my movement disorder (though that's been an almost daily problem for about a month, so it's not new since the minocycline).

The other weird thing is how teary and sad I have been since starting on the minocycline. I am normally very cheerful, constructive, and positive in my attitude, but boy am I moody now! Part of it may be that I've just felt crummy for a month and am trying to stay in school full-time. But, I think it is different since the minocycline. I don't normally feel so unsure about my relationships, irritable, uncomfortable being around people, easily teary and sad, etc. It's really odd.

Has anyone had sadness as part of a herx? I can't figure out whether the elevated temp and major mood and neurologic changes mean that minocycline is good for me, or if this means I should stop taking it.

Thanks for your feedback....

HVG

[This message has been edited by HudsonValleyGal (edited 30 March 2005).]

Right now, the only maintenance abx that work for my neuro Lyme are omnicef, ketek, and flagyl. I'm also working in very low doses of rifampin, and even that has a powerful effect on bartonella. I've been on mepron and artemisinin for babesia for five months. I'm still very sick, but am finally at a point where a full-time job might be possible.

About your LLMD--a lot of people have been posting similar experiences with a doctor in your area, which may suggest a pattern. You should know that I had a lot of problems over the past few months with him, because this doctor absolutely did not want to change his protocol, even though I did tons of research and found many of his abx treatments to be a year or two out of date. So don't take his resistance to your suggestions personally, and make sure you have backup.

Last week, I finally had to make an emergency appointment with another person, or I would have been in the hospital within 48 hours.

Thank you for sharing your bicillin experience. That's the next thing on my list, and it's thrilling to see how many people found it useful. There's a well-respected Lymenet member who uses it along with mepron, ketek, and omnicef, and says she feels better after 16 years of Lyme/babs/bart.

Thanks for the info. I had a hunch the minocycline was why I'm so woozy and out of it. I'll try to get in touch with my lyme doc to see what he'd like me to do. Maybe I'll take the antibiotic all at night, instead of twice a day, or reduce the dose for a while.

Liz, While I live in Dutchess County, NY, I go to Connecticut to see my doctor. So, we it sounds like we have different physicians.

I've been tested for coinfections a couple of times and it looks like I don't have them. But, my Lyme doc is always keeping an open mind about that kind of thing. I assume that for now we'll just focus on medications for Lyme, though.

The bicillin has made a big difference for me. It was combining bicillin, plaquenil and the IV immunoglobulins that seemed to help the most, getting me out of bed and out of the house on a regular basis for the first time in many years.

Good luck with your treatment. I hope whatever combination you end up using, it will work well for you

your obviously seeing dr.k in orange. he is a very good neurologist but he won't treat sero-negative co-infections.

unfortunately they are most often sero-negative b/c the immune system is down (and the testing sucks). glad to hear the IVIG is helping your immune system though.

you may ask him for a month of levaquin for possible bartonella. it won't throw off your scheme at all.

as for babesia the plaquenil/biaxin has said to be helpful but mepron (or malarone) and biaxin is suppossed to be the best treatment but it takes many months.

also the herb artemesia, not artemesian, is very good for babesia.

and like the others pointed out minocycline has been known to cause nasty dizziness.

best of luck, hope you continue to make improvements and get that nursing degree!

I'm not far from you..

I have to chime in, that co-infections should be a prime suspect to consider.

I know many people in this area who have contracted this illness we call "Lyme"..
and upon treatment, ect..in Lyme literacy..
noone I have found has just Lyme.

I have/had Lyme, Babesia, Bartonella, and Mycoplasma.

My son has all of them, too, minus Babesia..we THINK no Babesia anyway.

Our neighbors, have identified at least Lyme and Bartonella.

Bartonella and Babesia are prevalent here in the Northeast..
and Mycoplasma can be both tick-bourne, or opportunistic..

So...
I also know many of the Lyme Docs are presured immensely not to treat without a pos test.
We see Doc J for my son, and repeated PCR ended up showing his infections at different times in the course of things. Myco didn't show until well into treatment.
Those tests are like going fishing, so must be repeated frequently to help much at all.

But the fact remains, the tests are woefully innacurate, and multiple infections make it harder to "catch" each one.

He often treats emiprically based on symptoms when he reaches a "plateau" with a patient.

I would suggest investigating the posibility of unaddresed co-infections.

You can learn about and experiment with Artimisinin..
and yea, Levoquin and Rifampin both have activity against Bartonella and Mycoplasma.

For us here, a Minocyclyne, Rifampin combo brought significant, lasting improvements.
(also brought our immune complexes down to normal)

That could have been Bart or Myco resolve..
maybe Lyme, too.
Minocycline was very helpful to us both..
Rifampin also.
We had initial herxing on the Mino as well.

I wanted to ask, were you on IVIG to raise IGG Immunoglobulins, or to treat neurological
symptoms?

All the best in continued recovery...

Mo

About the Minocycline... If it is to rough on you back off the dose until the effects are tolerable.

It seems to be very effective on stuff hiding in our brains, and starting it too quickly can be very uncomfortable. If you can still feel it while taking a lower, more tolerable dose, it is still doing it's job... just a little more slowly.

Our LLMD started us off on 50mg every other day, just for comparison. Even that packed a punch! After a 5 weeks though we are on 200mg a day with clear minds and only mild side effects.

My body hurts all over sometimes from the herx, but the mind symptoms are almost completely gone now.

I guess it is a little late to say that now, but you do well to start slowly with this one unless you want to be knocked flat.

We hope you start feeling better soon!

I've only beeen on Bicillin 3 months so maybe too early to say for me.