Ending IV Therapy: When is Enough, Enough??

IV therapy was a long haul and now I am ready to tell you how it ended. Not to spoil the surprise, but I am doing great now on orals. Let me catch you up to where I was from my last post.

Week 28: Drug Holiday

This was hardly a "holiday." I had been off Babesia treatment for a couple of months and during this week I relapsed. How did I know? Easy, the headaches from Babesia are the worst headaches in the world, at least in my world. I liken them to an axe assaulting your skull over and over again. In addition, night sweats reemerged. From my experience I can tell you that Babesial sweats are heavier, wetter, and more diffuse (they occur throughout), as opposed to Bartonella sweats which are lighter and mainly in the chest. If you are reading this and having significant night sweats and headaches- get on Babesia treatment ASAP, even if tests are negative or pending. Like I always say, if you are very ill chronically from Lyme you have all co-infections and even the co-infections no one yet knows about. And treat for these even if your tests are negative!

I restarted Malarone and Azithromycin and though initially my symptoms worsened, within a day or two, the headaches and sweats stopped. Dr J suggested that I continue pulsed (M,W,and F), high dose Malarone (4 tablets twice daily) with Azithromycin, (500 mg twice daily, and Artemesinin (1000 mg twice daily). Yes, I know pulsed therapy for Babesia is controversial, but I have come to see it's value, but that's another post.

Week 29: IV Levaquin/Meropenem and oral Rifabutin

This drug combination is a pretty intense Bartonella treatment. I was able to function but developed hyperactivity, insomnia, and OCD, in addition to a lot of nausea and reflux. Initially I felt my GI symptoms were side effects from the medications, but since I have come to realize it was all probably due to Bartonella die-off. Bartonella causes a lot of (varied) gastrointestinal complaints, including fullness, bowel changes, abdominal pain and nausea.

What ever the reasons, I grew certain that my IV should come out. I was done. I had done enough IV treatments. And so with my plea to Dr J to, "stop the train," my PICC line was removed, 337 days after placement. Uneventfully and easily within one second the line was out and in the wastebasket.

I was not cured and back to normal but I was better than I had been in years. When my line was first placed I could not add numbers, collate papers, follow recipes or shopping lists, help my 11 year old to school, control my emotions, or feel happy to be alive. I had horrible dental pain, and a frozen shoulder. All of these limitations were now gone or just about gone. When the line was first placed I had felt completely hopeless and lost. The day it was removed I knew I would conquer this disease fully.

The day my PICC line was removed I boarded a plane for Florida and jumped into a swimming pool! I went to crowded restaurants, and shopped (with a tween), in noisy stores. What a difference a year of intravenous antibiotics makes.

Weeks 27: Burn Out and Yeast

For a variety of reasons this drug holiday was overdue and by the time it rolled around I felt like my body was "burned out" from the intense IV treatments. Here lies the dilemma in Lyme treatments: is the the treatment too toxic or are you herxing? Most likely it is both. This is where pulsing makes so much sense to me. I could not imagine doing drugs everyday, day in and day out, continually beating down my body.

I believe the goal in "conquering" chronic infections like Lyme, Babesia, Bartonella,and perhaps the XMDR virus is to fortify the immune system so it can go back to doing its job. Herbs or antibiotics will surely lower the infectious load but I don't believe these infections are ever entirely eliminated. To resume a great life you need to improve your overall health. Yes, lowering your infectious load is necessary, but overall health and balance with adequate detox, immune and hormone supports are perhaps equally important.

I have had Lyme since childhood. I lived a full life, though I frequently had to build up my body with all of the other things we grow tired of hearing about (herbs, hormones, supplements, good diet, etc). Unfortunately despite this, reinfection with a (seriously contaminated) tick leveled me in 2007.

Throughout my illness I had been faithfully supplementing with Transfer factors, vitamins/minerals, adrenal hormones (Pregnenolone, DHEA),and Estradiol/Progesterone. Normally, during drug holidays I added detox treatments, (infrared sauna, IV vitamin C, B complex, Magnesium, trace minerals, Methyl B12, and Zinc), followed with IV Glutathione, oral NAC, and vitamin E. But by week 27 I was too wiped out to get it together to do any of these marvelous things. I had "hit the wall."

I felt burned out from everything- drugs, supplements, IV pushes, gluten-free bread, IV nurses, green drinks, lab tests, you name it. Burn out can be a slippery slope, and in this apathetic state I became lax with Probiotics and developed yeast- severe, intractable yeast. Diflucan, Nystatin, Clotrimazole, and other anti-fungal salves had no effect. Thankfully, my orthomolecular practitioner prescribed Pleomorphic Alba (www.naturalhealthyconcepts.com/mm5/merchant.mvc? ), which worked immediately. I started back on Sacharomyces, (4/day), with 2 capsules of full spectrum probiotics, and glasses of Goat Milk Kefir. Yeast brought me out of supplement disdain and apathy.

P.S. Despite my burned out state, I was still able to do household duties, something I had not been able to accomplish prior to IV therapies.

Tigecycline- Works Well but Watch Out For the Sun

Intracellular drug levels of many antibiotics are reduced by efflux pumps which often make the intracellular levels of the drug too low to have a beneficial effect. With Tigecycline, the efflux pump is inhibited which increases intracellular concentrations. Nausea can be extreme in some cases. Sun sensitivity is an issue, so beware in these summer months.

My personal experience was that Tigecycline cleared out my head! There's no other way that I can put it.

Are Some IBS Patients Suffering from Bartonella?

Many IBS (Irritable Bowel Syndrome), patients were shown to be "cured," following treatment with a Rifamycin like drug (Rifaximin).

Bartonella infection can cause a host of gastrointestinal symptoms, including nausea, reflux, diarrhea and generalized bowel upset. It can often be difficult to distinguish Bartonella die-off from antibiotic associated side effects.

http://ihealthbulletin.com/blog/2010/05/04/rifaximin-antibiotic-treatment-irritable-bowel-syndrome/

Week 26: IV Meropenem (Merrem) and Levaquin

This was my first experience with Meropenem (Merrem). Laboratory tests have shown Meropenem behaves similarly to Ceftriaxone on Borrelia (Lyme bacteria). I think Ceftriaxone is toxic and overused. Lyme sufferers have enough misery, and shouldn't have to deal with gallbladder removal, as a result of prolonged (daily) exposure to Ceftriaxone. There is also likely to be less drug resistance with Meropenem.

Meropenem caused many of my Lyme symptoms to emerge. I developed pain in my knees,wrists, shoulder, and fingers. I also had a LOT of fatigue. Initially I slept soundly for 12 to 14 hours and took naps in the afternoon. However, as Levaquin hyperactivity took over, my fatigue was replaced with hyperactivity. At times it was uncomfortable as I felt tired, but restless at the same time and napping became impossible. As the week wore on, I began to have some OCD, with a touch of mania. I spoke quickly, thought quickly, and cleaned most things within immediate view.


Levaquin also caused reflux, nausea, and belching. The belching was strange and unlike a burp, or anything I had ever experienced. Dr J explained that the crico-thyroid muscles can contract leading to this odd symptom. Levaquin also causes constipation- so if you use it take a lot of ground flax seed, and magnesium citrate if you have this problem.

On Sunday, last day of infusions, I developed more hyperactivity, noise intolerance, agitation/ shaking limbs/ muscle spasm/ skin hypersensitivity and worsened insomnia. I had mild phobias and was easily tearful.

I looked forward to a drug holiday and cannot imagine how people take antibiotics daily, months in and out, (as I once had).

Week 25: Levofloxacin (Levaquin) and Tigecyline (Tygacil)

This was my third course and Tygacil and Levaquin. It started out okay, as I was able to sleep through the nausea, but the next day I had reflux and an uncomfortable feeling- sort of like I had swallowed a beach ball. For this reason I changed dosing to every 2 days…(M,Th, and Sunday).

After the second IV drug day (Thur), I had a very hard night. A lot of nausea and when I got up to get a bucket to heave in, my legs began to shake/?hop uncontrollably. When I got back into bed I began to shake and had strange breathing- almost like my diaphragm was in spasm. It felt a bit like a seizure, but I conscious. It lasted about 10 minutes and then when it was over the nausea was miraculously gone. I think the nausea was die off, not a drug reaction. The next 2 days I felt surprisingly good. Active, happy, productive- slight insomnia but less than previous and no mania and very little OCD (too bad, my house could have used a "spiff up").

Unfortunately, the "beach ball," grew back in my stomach and I was just unable to ponder any more Tygacil. The nausea increased and I was able to do only Levaquin, and finally Dr J advised me to stop the Tygacil and switch to Meropenem (Merrem) the next Monday. I had made it through 13 doses of Tygacil (I think that was the count, it was all sort of a blur), and I was officially through the toughest part of the protocol.

Horrible as it was, it was working. In the weeks to follow I was to begin regaining my life.

Weeks 24: Drug Holiday, (No Antibiotics!)

I love that they call breaks from antibiotics, "drug holidays." Like your cells get to travel to an exotic land and lay around on the beach recuperating from what feels like gallons of toxic drugs. It was nice to be off antibiotics, but it was not a holiday especially because it ended with 2 days of Metronidazole (Flagyl).

Flagyl is a bitter pill, literally. I have to take mine in honey. I plunk it into the honey jar and fish it out with a spoon, with gobs of honey, and then swallow it quickly. This works. I can take it without gagging, but it still gives me nausea for a couple of days. I don't know how, (before doing the Dr J protocol, which limits Flagyl to two days, after drug cycles), I took Flagyl 1-2 weeks straight, every 6 weeks! No wonder I felt suicidal much of the time back then (before I discovered Lamictal and short pulses of Flagyl). Now don't get me wrong. I do think the long Flagyl cycles did me a lot of good. No way of knowing but I am doing very well on this protocol and I think I owe this to some very solid treatments before starting antibiotic pulsing.

There is a time and place for pulsing. It is certainly NOT a treatment that I would start with, but if you are lingering and miserable after 6 to 12 months of every day oral treatments, I think it is great and is working well with me.

Anyway, week 24 was a drug holiday. I was recovering from bronchitis and travel, and Tigecycline. Maybe that's why this week didn't feel so good.

To help, I did a detox, using Lactated Ringer infusions with added vitamin C, B Complex, Magnesium, Methyl B12, and Zinc. In addition I did Glutathione pushes every other day(1500-2000 mg).

I'm not sure, but maybe this was too much, or maybe my immune system was getting "more targeted," or maybe I was just very run down, but as the week wore on I became achier, and achier, and discouraged. It all felt like way too much. It was after all, 2 years since being diagnosed and nearly one year of IV therapies.

Alas, I did get over this and as I write this, weeks later, I am doing better!