Friday, December 19, 2014

Update from the Lymelight

Ok so, an update about where I am with Lyme treatment.  I saw my doctor two weeks ago to go over the co-infection testing and symptom questionaiires.  I tested negative for all the co-infections, which we expected. She did, however, diagnose me clinically with Bartonella along with the Lyme.  I'm not completely sold on the Bartonella diagnosis, although I do recognize the lack of reliable testing.  The test screens for 2 strains, and there are, I believe, about 30.    Here's a quick guide to some of the common Bartonella symptoms, and many of them overlap with Lyme.  I have 26 symptoms on this list, although many of them are redundant.  It was the best chart I could find, but it's definitely not perfect.  


Here's a chart showing symptoms and overlap of Lyme (borrelia) and it's host of potential co-infections. With testing that is not very accurate, and symptoms that overlap, diagnosis is quite tricky.



The second chart doesn't even list neuropathy as a bartonella symptom, but from everything else I've read it can be. So the plan is to assume I have bartonella, as about half of Lyme patients do, and focus on it first.  It is a gram negative, intracellular bacteria that you've probably heard as "cat scratch fever."  It's transmitted by fleas, ticks, sand fleas, and biting flies.  I'm on a double antibiotic regimen for it of Rifampin 600mg once daily, and Doxycycline 100 mg twice daily.  I'm also on Nystatin as a preventative against yeast since being on antibiotics can allow yeast to flourish.  That would be no bueno.  She also gave me some anxiety medicine to help manage the psychiatric side effects that can come with treatment. I don't like to take them, but sometimes Rich makes me (aka here you're being crazy, please take this.)  The doxy also targets Lyme but this is pretty much a bart regimen and wouldn't eradicate Lyme long term.  To do that, we'll drop the rifampin and change up the antibiotics at some point.  There are no hard and fast rules for treating these infections, it's all primarily based on symptoms and how I'm feeling.  I asked how long I could expect to be in treatment, and she said 6-12 months for the bartonella then another year or two for the Lyme.  So at this point I can't even think that far ahead and I'm taking it one day at a time. 

She didn't paint a pretty picture for how the first month or two of treatment would go. She's been through it herself, so I appreciate her candor and knowing what worst case scenarios to expect.  These infections are in the nervous system and when you start treatment you "poke the beast" so to speak, and it can cause a myriad of physical and emotional symptoms.  She warned me about panic attacks, rage, pain and overwhelming fatigue.  So far, at 2 weeks in, things are going ok.  I'm most definitely more emotional than usual-crying at everything, alternating between a jittery/giddy feeling and an I-hate-everyone feeling, and being very easily overwhelmed.  It's sort of like bad PMS combined with pregnancy and then some.  I've had a few nights of some very vivid and scary dreams.  I don't remember them exactly but I would wake up with my heart racing, almost like a night terror or panic attack in my sleep.  The neuropathy in my feet is marginally worse.  I've also had night sweats the past 2 nights, which is a symptom of yet another co-infection called Babesia, so I'm keeping an eye on that.  That's about it as far as how I feel treatment is making me feel so far.  Nothing is better, and some things are worse, which is exactly what is expected at this point.  

In addition to the antibiotics, I also take a ton of vitamins, supplements and herbals. There is evidence that the herbals are synergistic with the prescription antibiotics, meaning they allow them to work better and penetrate the tissues better.  There are antimicrobial herbals that directly target the Lyme and Bartonella bacteria, and then there are others that are more supportive, like to support liver function, joints and collagen, and the cardiovascular system. If you're medically minded and haven't studied herbal medicine, I challenge you to do so.  It's fascinating, and very encouraging, with the resistance we're seeing on the rise to conventional antibiotics.  Steven Buhner is an herbalist who has written some brilliant books on it.  Here are a couple.




I'm following most of his herbal Bartonella and Lyme protocols.  These are my tinctures.  I mix them in bit of pomegranate juice and drink them three times a day.  They are the opposite of delicious.  Let's just hope they work. 







Here's a pic of about 2/3 of the pills I'm taking daily.  I'd already taken some this morning, and some stay in my bathroom because I take them at bedtime or in the middle of the night so they didn't make the photo shoot.  I don't have an exact count, but I think it's about 70 a day.   Don't try this at home.





And just for fun, here's my daily schedule. It's obviously a work in progress as things get added and changed.  Yes it runs from 5am to middle of the night.  There are some things to keep in mind when taking this much.  For example, some things need to be on an empty stomach while others need to be with some fat and food. Doxycycline can't be taken near any dairy products or vitamins containing calcium, magnesium or iron. For those of you who this means something to, we've got Cyp p450 inhibitors and inducers galore going on here.  Probiotics need to be spaced out away from antibiotics and antimicrobial herbs so you don't just immediately kill them.  Binders to help with toxin removal must be taken far far away from everything else so as not to bind and remove the good things you are taking, hence the middle of the night dosing. I just take them when I invariably get woken up by a dog or kid in the night.   And you might notice that the bottom of the schedule says "exercise, meditate." Yeah...haven't quite found time to fit both of those in yet.  I'm a big meditation failure thus far.   I'm trying everything I can to avoid getting an opportunistic infection like Candida or C. diff from taking all these antimicrobials, so I'm on oral probiotic capsules as well as eating homemade sauerkraut and drinking kombucha daily.  
Whew well if you stuck it out with me to the end, thanks! I go back to see my doctor in January to touch base on how things are going. 

1 comment:

Michele said...

I'm so sorry you are having to go through all this! I hope things start getting better for you soon. I wish you guys a Merry Christmas and a great New Year!