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.
The Past
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.
Present
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.
The Fallout
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!
Wolfdreams.... 
Thank you for sharing your journey, Ash. This is, indeed, radical honesty. I admire your courage to speak of this and your courage to go down this path again. I hope this time is nothing like the last. I hope that what is left in your body causing the headaches leaves effortlessly and you regain your health and your freedom.
Patricia
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What beautiful wishes ~ thank you for them, your support, and for making me smile! May it be as you have hoped!
*gentle hugs*
Ash
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Thanks for your honesty in sharing, Ash. I was not aware of your blog before.
I’m a long-time diagnosed chronic fatigue syndrome patient who has tested positive for Lyme disease. I’ve begun IV antibiotics and will be getting a pic line soon.
I really hope that with new understanding of Lyme treatment your experience this time will be much less difficult and lead to real improvement.
I’m so glad you have a strong, loving daughter who is clear-headed and who sounds amazing. I know it’s hard on our kids to see their moms suffer, but when they can hang in there, they develop such a richness and depth to their own lives. And won’t it be great when they can celebrate our health with us, too?
Blessings to you and your daughter.
Meg
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Thank you so much for your comments, Meg. I, too, hope that your Lyme treatment goes well. It was kind of hard for me, seeing the other Lyme patients who started when I did but actually got better, where I did not. I know it *can* work for folks, and so hope it does for you. I hope you stay in touch & let me know how it goes!
And PICC lines – they really aren’t as bad as you likely imagine. Annoying, yes, but you get used to having them in remarkably quick. I did my daily rocephin at home, and home health nurses came once a week & were absolutely fabulous! I always had the extension on mine so I could reach it to do my infusion, and when I was done I had soft socks that I cut the toe out of that i’d put up over the dressing, then wrap the excess tubing around it, and fold the other half of the sock down over it to hold it all in place, protected, and most importantly, clean!
Your comments about the kids growing up with us chronically ill parents is right on the mark! My 28 year old daughter is in the Army, and she was deployed to Kosovo when I did my Lyme treatment. That left my then 11 year old daughter to become my primary caregiver. She did a great job, and has continued to be my constant companion, best friend, confidante, and personal cook! We often laugh about there being times when she is more mother to me than I am to her, which is kind of sad, but honestly, she’s the wisest person I’ve ever met. She developed mild CFS & myofascial pain syndrome at 13, but is doing pretty well, all things considered. And she’s fully on-board with my doing this, even tho she was afraid I was going to die (and rightly so) because I was so very sick with the rocephin. I’ve never hidden any of my medical issues from her, starting when she was 7 and was the only one home when I had a cardiac induced pseudo-seizure. I think its always best to tell the truth to our kids, or they will assume the worst, so have been radically honest with her all along, and she often goes to dr visits with me. She could pass for a med student, easily!
So please stay in touch, and sending the best wishes possible for your treatment – I wish you great wellness, easy healing, and peace.
Ash
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Ash I sincerely hope with all my heart this round of antibiotics will help get you some improvement. Also hope the shakes work, you need some nourishment to help give you some strength. You have been through so much and have so much determination it is inspiring. The very best of luck to you and your daughter.
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Thank you, Margaret! I appreciate your kind words and support. And the shakes are really not as bad as I thought they’d be, as stuffed full of nutrients and aloe and herbs as they are. Just a smoothie to start the day with, and likely the most nutritious things I’ve eaten in years.
Take care, and thank you for reading and commenting!
Ash
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My friend, you have been down such a rough & rocky rd. before, that it isn’t making it easier now to have to go down it one more time. I am however, encouraged to know the dr. has so much more knowledge now than before. That saddens me so much that you had to be a virtual gunea pig in a way, before she learned so much more since that time.
You have such inner strength you haven’t tapped into yet, I just know it. I wish I could hug you & tell you this will all make it better. That is my wish for you! I want to see you healthy & feeling like all of this was worth the fight, just as you & your wonderful daughter do. I can see a wonderful bk. being written of all the positive experiences this time will bring, & how you almost didn’t walk down this path again. Lots of decisions, lots of emotion, & I can certainly relate with my own issues. I don’t have anyone to fight for. I don’t have anyone to care for me, so you have that from someone who truly adores & loves you, & that is a blessing. All my best to you, my friend. I hope this trip you find the’ve taken most of those rough boulders out of your way all along this path. Love to you.
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Ah, Dale, you write so beautifully! Thank you, dear friend! I know I am truly blessed to have Rhiannon at my side & supporting me, and it saddens me that you are on your own with all your own health issues. I am sure I would not have made it this far without Rhiannon’s support & encouragement, and suspect you are much stronger than you realize to be walking amongst us “living dead” all alone. At least now you have made real friends, even if we are online & far apart, but we do understand each other in ways that the healthy cannot. Sending much love & healing wishes your way…
*gentle hugs*
Ash
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Hi Ash, I’m so sorry for all the pain you are enduring. I am glad you have Rhiannon. Much of what you say I can relate to, but I haven’t been thru having a PICC, nor any long term antibiotics. I had a friend with Cystic Fibrosis and she hated the PICC! But sometimes she had to use one. I am sorry for you.
I pray, and will pray, that the treatment helps you, and that you are spared as much as possible the harsh side-effects. I can only imagine chronic migranes. I just shake my head, truly, because I have had bad headaches, esp., when I had RMSF without treatment for so long. After forty some days, well, it was hell.
I do have the noise sensitivity. And light. But not so bad that it causes headaches. I have to hold the phone out, away from my head. The sound vibrates through to the other ear. The other day was bad. Sounds going through my body. Sometimes, sound feels like waves in the ocean, but my doc shakes his head on that.
I’ve been thinking of you, and feeling your spirit. If you get to a place where you would like a visitor, even if it was for a day and one night, I would come see you. I don’t think it would take long to get to your house from mine.
Please know I’m thinking of you, and Rhiannon, and will pray for the very best of outcomes. I pray that you heal, that the shakes will help., and that you will once again be able to go for a ride on the parkway.
Peace, Love and Blessings,
Your friend,
Michelle.
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Sweet Michelle,
You are so very kind & supportive, and I thank you for the blessings you’ve brought into my life – I’m so very glad we connected!
I like the way you describe the sound sensitivity – its the same for me! As if I *feel* the sound, almost before I hear it. I think it must be that when there’s a noise, say a common but erratic sound like the little click my space heater makes when it goes off and on – its a very soft sound, from a radiator type heater – I hear it & my body reacts immediately, while my brain is identifying it as “the heater click.” So, its that tiny fraction of a second during which my muscles are spasming & pain increasing that gives it that feeling as if I’m registering the sound with something other than my ears first.
I, too, have trouble with phone calls, and have the volume very low and even then sometimes have to hold the phone away from me. Sometimes I just can’t talk on the phone at all.
I hope that once I get this sorted out, what we’re doing, that I’ll be up for you coming for a visit – i’d love so very much to spend time just catching up & enjoying the woods & mountains together.
Sending prayers that you, too, will heal, and your son continue to improve. Please keep up all the wonderful blog posts about your “green healing” experiences – I truly enjoy them, as well as the lovely pictures!
Many gentle hugs, and much love,
Ash
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Thank you Ash. Your friendship, and you, mean a lot to me too and I’m also very glad we connected. I hope your day has been… well, peaceful I guess. I am lost for words all of a sudden. I’ve been doing house chores, against many odds! Pain and fatigue being the most difficult. I finally got the Christmas decorations away. They’d been in a box in the middle of my bedroom floor. Am so glad to have done that, but boy my body hurts and I’m tired. Sound hasn’t been as hard on me today. I just realized that. Again, I sure hope you are finding relief some how, and am still saying prayers and wishing you much healing! With love, and hugs, Michelle.
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Our Christmas stockings are still hung on the mantle with care, and the box of decorations still in the living room! So you’ve progressed further than we have!
*gentle hugs* & much love!
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Oh, you poor thing. I must say, I’d have to take down those stockings Ash. If I visit, I will if it’s okay, LOL. I can’t take Christmas in spring. I dated a man once who left his tree up all year! I promised never ever to do that. And he wasn’t even sick. He was something else, I don’t know what. I think we should qualify for some homecare. We deserve it. My doctor said when I asked him if I could get help that it sure makes sense, but that he had never had a patient with CFS or Fibromyalgia ask for help in that way. (I’m just kidding about your stockings you know. I would only take them down with your permission). I hope your headaches have calmed down. I’m thinking of you, as always. Love, Michelle.
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