Last week, I saw my LLMD (Lyme Literate MD) again, and left after spending an hour with her, in shock & dismay. Where neither my PCP or neurologist have any ideas really where else to go with my deteriorating health, other than the “band-aid” approach – treating the symptoms as best we can – my LLMD has a very strong opinion of how to get to the root of the problem, the actual cause, and how to treat it.
But I don’t like it much. That’s not to say I think she’s wrong, but rather, that it scares me shitless to go down this path again.
I’ve been seeing her for 12 years, and I’ve been a very frustrating patient for her, by my continuing to stay very ill, slowly spiralling downward. She told me that she’s learned a lot from me & how I’ve reacted to some treatments we’ve tried, and she wished that she had known all that she knows now when she first started treating me.
We will call her Dr Z, and if you’ve seen the amazing Lyme disease documentary, Under Our Skin, then you’ve seen her, sort-of. She appears in outline, in shadow, as at the time of the filming she was being investigated by the state medical board for long term IV antibiotic use in Lyme patients. She was cleared of all charges, btw.
When I started seeing her all those years ago, she immediately suspected Lyme, along with a host of other things (EBV, HHV’s, Parvo B19, Mycoplasma, etc), and all her intuitive guesses eventually panned out. Getting a positive Lyme test took a loooong time, and after years of oral antibiotics, we finally got one, and I finally agreed to getting a PICC line & undergoing IV Rocephin for a solid year, from 6/06 to 6/07.
It didn’t go well, in some regards. She had told me to expect to be sicker than I’d ever been in my life, sicker than I could even imagine, and I was. I lost my business, then almost 10 years old, as I became completely bedbound except for shaky trips to the bathroom. It eased up in intensity towards the end, but I’ve stayed primarily housebound ever since.
And ultimately, we’re pretty sure we didn’t get all the Lyme. Knocked them down by a lot, but they’re tricky suckers to kill, adept at hiding out in lots of places.
Fast forward to now, and I’m living with chronic daily headaches, migraines, which are increasing in intensity. I’m also constantly nauseated, lack an appetite, increasing pain from reactive arthritis, overwhelming exhaustion, swollen glands, sore throats, gut issues, etc etc etc.
It is the daily migraines with accompanying light & sound sensitivity & nausea that are really my biggest problem, as it is because of those that I: #1 regularily want to blow my brains out just so it will stop hurting, and #2 am simply not eating enough, which has led to a weight loss we can’t stop, and me being 111 pounds with increasing loss of muscle.
As my doctor visit unfolded, we discussed all these symptoms, and Dr Z says to me that I’m describing Bartonellosis, another of the tick-borne diseases. Her theory is that with all the oral antibiotics I took plus the IV rocephin, which is not specific for Bartonella but will knock down some of them, that I’ve had “Bart” all along. Wisdom she’s learned over the last decade is that you have to eliminate the Lyme co-infections & parasites as well as detox prior to tackling the Lyme.
So her plan is, before I lose even more weight & get any weaker than I already am, to get me a PICC line and on IV antibiotics for the Bart. Assuming insurance will approve it.
I asked her, flat out, if she thought I was really strong enough to go through this. She said yes, that she has two patients being treated for Bart right now who weighed 80# when they started, and within 6 -8 weeks their headaches had resolved, and they’ve each gained over 20#.
In the meantime, we’ve already done a trial dose of the Invanz, sent blood to MDL to check for Lyme, Babesia, Bartonella, and other tick-borne diseases, plus had 25 tubes of blood drawn at Labcorp for a host of other tests.
I’ve also started on “medical shakes” – highly nutritious & containing a broad spectrum of vitamins, minerals, amino acids, and herbs, especially geared to healing my leaky gut, detoxing, and stopping any further weight loss.
As I write this, my head is pounding away, and I’m hooked up to a Holter heart monitor, something my PCP set up, along with the echocardiogram I had Friday.
I’m scared. No, I’m repelled by the mere thought of getting another PICC line, and doing more IV antibiotics. That’s all there is to it. Dr Z says the flare to be expected won’t be as bad as that from the Rocephin, and it’s likely I won’t be on it as long, maybe around 4 months, depending on how I do. And she says she has tricks up her sleeve now, things she can do to minimize the flare.
But my previous experience with the IV antibiotics, which very nearly killed me, has me pre-conditioned to want nothing at all to do with more antibiotics.
On the other hand, there’s not really another choice. We’ve been flailing around trying to stop these migraines for years, and they just keep getting worse, and I just keep getting weaker.
Its pretty much a do or die. This is the only hope of any improvement anyone has for me. My neuro shakes her head & gives me a sad look and says she’s not going to lie to me and tell me she thinks there’s some magic pill out there that is going to make the migraines go away. My PCP is terrific, and had suggested the medical shakes at my last visit, but other than treating the symptoms, she has no ideas for what else we can do.
A Dose of Radical Honesty
By now, you likely already know that I’m all about telling it like it is, no holding back, nothing unsaid. Radical honesty, even if it hurts to hear it.
The truth is, I’ve been sick a very long time. Fighting Lyme & its co-infections, the ME/CFS (which my LLMD thinks is caused by the Lyme & its friends), the constant pain. And that really wears you down.
I love this world we live in, love watching nature, the seasons change, and I love my family, very much, and my spirit sisters. But were it not for Rhiannon, my 17-going-on-50 year old daughter, I don’t think I would even be here trying to wrap my head around this. In so many ways, it would be easier to just give up.
But she needs me, for as long as possible. And I owe it to her to do whatever it takes to make that happen.
And as she pointed out to me, when I expressed these thoughts to her, wouldn’t it be nice to be rid of these headaches? Wouldn’t it be nice to be able to go see a movie again? Or even just to watch tv again? Or to talk on the phone without my mother’s voice causing me to flinch with pain? To have the windows open and be able to listen joyfully to the neighbor’s children playing instead of wincing at every high-pitched squeal of delight? Wouldn’t it be nice to go for long drives on the Skyline Drive like we used to, without having to worry about the ever present migraine being made worse by sun flickering through trees?
Yes. Yes, it would indeed.
If you have experienced a similar situation, I’d love to hear about it, whether good or bad! Please, leave a comment below, or you can message me privately on Facebook – link up top on the right. Thank you for reading, caring, and sharing your thoughts!