GAME CHANGERS POST #2 ANTIBIOTICS

I am not writing these posts in any particular order. If I were, this post would be number one. The #1 game changer in my treatment has been antibiotics.

Please, Lymies, I beg you, take your antibiotics! Every article I’ve read, and every story I’ve been told of people recovering from Lyme has included antibiotics. At this point, the consensus from doctors on the front lines seems to be antibiotics are crucial, and if the diagnosis is at all delayed, then more than the standard 21 to 30 day course is necessary.

(Some tags for this post: biaxin, clarithromycin, metronidazole, amoxicillin, doxycycline, bicillin, rocephin. plaquenil, success stories, how long do I have to take antibiotics for Lyme)

The problem with antibiotics: They are not fun. A lot of patients stop taking them.

Yes, I know you will feel worse when you start on these meds: this is called the Herxheimer reaction. Yes, the herx can be gnarly, but hang tough. Be strong, take your meds.

You can do it, I know you can! I’m rooting for you, Lymies! Once you get through it, you’ll feel better.

I had to dig deep into my old boxes of medication to find
this long-ago expired bottle. Why? Because I don't take abx
anymore. You'll need these nasty meds, Lymies,
but fear not, they're not forever. 

LET'S GO INTO DETAIL

This was going to be a short-and-sweet post, but—well, I tend to write a lot.... Read on if want more on my personal experience, or if you’re still in doubt about taking antibiotics. Or if you want reassurance and bucking up that it's really worth it.

Once I was diagnosed, I myself wasn’t sure if it was the right treatment route for me. I talked to as many people as I could about it, and hindsight I'm very glad I chose antibiotics. In hindsight, it seems like a no-brainer. At the start, I had a lot of doubts. This is natural.

Doubt can come from some deep part of our brain that does not want to be sick. Just getting to acceptance that this is happening can be hard. From there, i

I saw this in pattern in a woman who showed up at a Lyme support meeting. This woman had been diagnosed within a few months of the onset of her symptoms, she'd been taking antibiotics for two weeks, but was ready to quit. Everyone at the meeting was telling the woman she needed to stick with the antibiotics, that they would work. But this woman kept saying no, she was feeling so much worse on the antibiotics, she thought it just wasn't worth it. (Yes, easier to tell yourself it's not such a big problem. Maybe you should just take some vitamins and work on positive thinking.)

Also at this meeting were people in wheelchairs, people who had been so unfortunate as to have gone far too many years without a diagnosis, or without the correct treatment. Yes, if Lyme goes untreated on for too long, it can get you to the point where you can't walk. The people in wheelchairs were telling the woman to take her meds and stick with them, before it got really bad, but the woman in doubt seemed incapable of putting it all together.  

The longer you wait and delay treatment, the harder it is to beat the illness back. Given time, the Lyme bacteria has a way of rooting itself into places the medication can’t get to. (Not yet, anyway. This is something researchers are working on.)

The woman in doubt didn’t understand how lucky she was. I wanted to pick her up and shake her and tell her how blind she was to the tremendous luck she’d had. She’d walked into a standard doctor’s office and gotten a diagnosis right off the bat, with the Elisa test! I would have given anything to be able to turn back time to the early months of my illness, to have had that early test come out positive instead of the false negative I got. Give me a time travel machine, and this is the first thing I’d do: Get myself diagnosed on time, and give myself early treatment.

I went eight years without a diagnosis, with the illness slowly, steadily progressing. Meanwhile, based on incorrect medical information (that I didn't have Lyme disease) I went on an endless quest from one doctor to another in search of a reason for why I was so sick. If I’d had a timely diagnosis, I would have gotten a decade of my life back.

GOING DOWN A RABBIT-HOLE

I hardly ever think along these lines, because I have an incredibly good life right now. but I’m going to lay it out, in case you’re someone who’s in the early stages of infection. In case you're someone who feels a little run-down, has some weird symptoms (like trouble sleeping, mixing up words when you speak, sensitivity to noise, trouble concentrating), and you're wondering if this Lyme diagnosis is worth it. 

Feeling like hell, but looking fabulous (as everyone told me).
Groan--that was a bad insider joke for the chronically ill.

Here’s what probably would have happened in my life in that decade, but didn’t, because I had Lyme that went undiagnosed and untreated:

THINGS THAT DIDN’T HAPPEN TO DUE LYME

-Continuing my job/career

-Going to graduate school

-Getting married

-Having children

-Continuing to live independently (i.e. not at my parents’ house)

Instead I was having Lyme. Yes, in my parents’ house, dependent on them to do everything for me. And yes, at the start, like this woman at the support group, I wasn’t bedridden. I limped along through work, exhausted but getting by. I could still read, I went on short walks, but going running was leaving me wiped out and things were getting worse. In time they were a nightmare.

If this woman would stick with the antibiotics, she could knock the bacteria out of her body before it took root. She’d likely go on to have a healthy, normal life. An entire room of people were telling her this, but she was having a very hard time hearing it.

Why not turn around if you see this up ahead?

It was as if she was driving along the highway, saw a giant conflagration of a ten-car pile-up in front of her, and decided to keep driving her car straight into the wreck, because 1) it was going to be really inconvenient to turn the car around and find a different route, and 2) she wasn’t feeling all that bad right now.

Please, people, take your antibiotics!

This is how a lot of medicine works: Medicine it is short-term inconvenient, but in the long-term, it's extremely convenient.

If you were diagnosed with cancer, would you skip chemo because it makes you feel bad?

I understand how hard it is to come to terms with having a difficult illness and a difficult treatment. I hope this was all this poor doubting woman was going through. She just needed time to get her head around it. I hope she went home and gave it some thought, and the message from the support group got through to her, and she stuck with her medication.

MORE ON MY STORY, ANTIBIOTICS-WISE

I was at last diagnosed with Lyme in 2007 (my symptoms started 1998 and became overwhelming in 1999). I’d finally found a great doctor (Marty Ross) and I also have had wonderful naturopaths helping me through. (Amy Derksen and Nesreen Medina, and Carolyn Humphreys.) I took heavy-duty antibiotics for three and a half years. If I’d started the treatment at the onset of my illness, no doubt I would not have needed quite so many years of antibiotics. If it had been caught right away, I might have only needed a few months of medication. 

My doctor, Marty Ross, worked with me to ramp up each new antibiotic, so that the herx was what I could manage. He also explained very clearly that the improvement I’d see wasn’t from day to day or even from month to month. The change would be gradual. After the first six months, he told me, I should look back to where I’d been at the start and see if there was a change.

Yes, he was right. At six months I wasn’t cured, but I could easily walk for a couple of miles. That had been impossible half a year earlier.

Rinse and repeat.

This is me on top of a mountain. I climbed it myself.

So eventually you might be hiking on snowy mountain tops,
and your dog will come too.

HANGING TOUGH

Yes, at one point I gave myself my own giant, painful shots in the butt for some of the antibiotics. The first was for an antibiotic called Bicillin. I thought I could never manage it, but I did. (A little more about that here.)

Rocephin is the antibiotic that seems to help people the most—the famous IV antibiotic. Because I have chemical sensitivity, when it came to Rocephin—I couldn’t have the plastic IV line in my body, so I did a daily shot of Rocephin as well. In that form, the needle is wide and the antibiotic is like sludge, which meant I couldn’t do the injection myself. I had my boyfriend and family give it to me. We went to the doctor’s office and had the nurse teach my boyfriend how to do it. It hurt like hell, each time. I did the shots for 11 months, and at the end of the time I was running and swimming again. It was, literally, a miracle.

Thumbs up for another cute dog picture: Cleopatra
swims with me, too. Part of the miracle!

However bad the antibiotics make you feel, remember it’s not forever. You’ll get better and you’ll get off them. I’ve been off antibiotics since 2011, and I’m doing fine. I’m on an herbal protocol to keep the Lyme in check. Keeping myself healthy is not always simple, but my life is a world away from what it once was.

On more note on Marty Ross’s “gradual ramp up” approach: I know doctors believe in pulsing, and I’ve read this is also very effective, but yes, the herx can be rough. Whatever your choice, please Lymies, TAKE YOUR ABX! Keep taking them until you feel the change! Don’t expect the change to come quickly. Have faith that it will come. It will.

Do your best to patiently explain to friends and family what you’re going through. It might help to have articles printed out to hand them to friends and family, so you don’t exhaust yourself talking about it. Lymedisease.org is a good place for that information. And don't hesitate to ask people to support you, especially in specific ways—small things that have beginning and an end. Like bringing you dinner, or picking up some groceries for you, or coming over to watch a TV show with you.

If you want to do rife, homeopathy, herbs, supplements, acupuncture—yes, go for it. But don’t skip your antibiotics. Apart from rife, I’ve done all these things, and while they have been helpful, my experience has been that they aren’t a substitute for antibiotics. TAKE YOUR ANTIBIOTICS!

NEW SERIES: GAME CHANGERS. POST #1

I've been slacking in the medical tips department, but I'm resolved to do better! My plan is to be more systematic, writing about one medication per post.

We all remember Miracle Max,
from The Princess Bride.
He was right, miracles take time.

This series is about what works for me. (This is basically a re-branding of posts with that tag. You can find these very practical posts in the word cloud to the left.) I wish I could say I've found the low-cost, one-single-pill, covered-by-insurance cure for Chronic Lyme. That is not so. Some of these things will be covered by insurance, others not. In addition, what works for me is a multi-step process throughout the day.

And yet, I've been reminded recently that my life is now unbelievably good compared to what it used to be. I've come to this point after years of trial and error, and with input from several good doctors. 


I wish, for the sake of everyone reading this, that things were simpler, medication-wise. But the human body is complex, illness is complex, and medicine is therefore complex. Stay strong, Lymies!

(And remember, medical researchers are working hard. Find more on that front at lymedisease.org.)







So here's the subject of this post:

I take this every morning, right before I get out of bed, and again at approx 12:30 /1 pm. This is to support my adrenal glands, which do not function well due to damage from Lyme. (For the record, I’m not advertising for Thorne Adrenal Cortex. It happens to be the brand I take but another brand would probably work just as well.)

Low adrenal function was the first clear medical diagnosis I got on the road to recovery. This was in the year 2001, a couple of years after I’d been knocked down by something mysterious, an illness that showed up on exactly zero medical tests. It would still be many years before my Lyme diagnosis in 2007. So the adrenal diagnosis was all I had for the interim. It was the first scrap of evidence that it was not all in my head, as so many doctors had been telling me. It was a small clue, but an important one.

The adrenal glands are glands located on top of the kidneys. They are, as a doctor once told me, the spark plugs of your body. They produce cortisone and cortisol, which are crucial biochemicals in the endocrine system.

Over the years, I've tried many things to support my adrenal glands, hydrocortisone, the pharmaceutical usually prescribed for adrenal insufficiency. (Prescribed an endocrinologist, in my case.)

The prescription hydrocortisone did very little for me. Likewise, other natural supplements touted to help the adrenals did not help me. Again, this is my individual, personal experience. I have no preference or belief about natural vs. allopathic medicine. I only care about what works. This type of naturopathic adrenal cortex was a game changer. It has made all the difference in my life.

It was the difference between being able to get up and walk, or not. When I started on adrenal cortex, it was many years after the diagnosis of low adrenal function. By then I was seeing a doctor who had figured out my blood was too thick and put me on blood thinners, which allowed me to be a little more active, enough to be able to walk about three blocks. That seemed like a giant break-through, but it was still impossible to build up my strength beyond that. At that time I was on hydrocortisone.

Once I stopped the hydrocortisone and switched to adrenal cortex, in a matter of days I was able walk eight blocks and build from that, walking further and more quickly as the months went by.

I made the shift to adrenal cortex in 2007, not long before I started my antibiotics for Lyme. It was in combination with the antibiotics, blood thinners, and quite a few other supplements, that I got my physical strength back. Like I said, things are complex.

This supplement is not vegan, or even vegetarian. Thorne Adrenal Cortex is taken from bovine adrenal glands.

I guess this makes me part cow.

Adrenal cortex a medicine. Yes, you can buy it over the counter, but I repeat, it is a medicine. It treats a real medical condition. Your endocrine system is a complicated and delicately balanced network! Meaning, don’t do this on your own at home, kids!

A doctor can run a test for adrenal function if you are experiencing severe fatigue. Please, go to a doctor for help with this. It is A-Okay to be a pro-active patient who brings suggestions to your doctor, especially suggestions from other patients who are posting about them because they work. Be polite, be concise, but ask. A good doctor will be open to your suggestions.

An Additional Note on Fatigue: 

I get very frustrated with the word fatigue. For me, fatigue meant feeling all day long like my body was made out of some impossibly heavy substance, along the lines of concrete mixed with lead, making it all but impossible to stand up or move around. 

Walking to the end of the block and back (which I stubbornly did from time to time) left me aching all over and unable to function for days and days.

If this sounds like what you’re going through, and you’ve been told you have Chronic Fatigue Syndrome, please consider that CFS is not a very useful diagnosis, or truly a diagnosis at all. Consider that you might have Lyme or another infectious disease, even if you've had a test for Lyme. The standard test for Lyme most internists will give you is wildly inaccurate. Check with an LLMD.

Have hope. I am now running five miles a few times a week, and (as readers of the blog know) spending a lot of time dancing. And getting around Seattle by bike. Things get better if you stick with your medication.

ADVENTURES in HERBAL TREATMENT FOR LYME

I’ve received requests from readers for more updates on the combination of Lyme-killing herbs I take, and I’ve finally gotten around to it. This going to be a spare-no-details-nitty-gritty medical post, so non-Lymies, you might want to look away!

Dipsacus Sylvestris, or teasel, one of the herbs I take
19th century illustration, anonymous

BACKGROUND (skippable if you’ve read the blog before)

I spent eight years of my adult life (age 26-34) scarcely able to stand up or walk, or read or write, due to an illness doctors could not diagnose, and which many people told me was all in my head. Once Dr. Marty Ross diagnosed me with Lyme, I took antibiotics for the better part of five years, and they brought about a miraculous change for me. Heavy-duty antibiotics got me up on my feet, walking for miles, then running for miles, and learning swing and Afro-Brazilian dance. Most importantly, I was able to read and write again.

Writing again does not mean charging around foreign cities working as a journalist, which was my job before I got sick. I work at home, writing short stories and this blog, taking little naps, and following a strict diet and a complicated medical routine, because I still have Lyme.

So the miracle of the antibiotics was not a 100% cure, but to it’s best not to get nit-picky about miracles. From bed-ridden to running five miles is still a miracle, even if, confusingly, you can’t get through the day without a nap.

Five years on antibiotics was enough, however. In 2013, I decided to stop pharmaceuticals and shift to herbs.

THE REASON FOR TAKING HERBS

Before I started this particular combination of herbs, called the Samento Banderol Protocol, my treatment approach had been ‘War on Lyme’: fight as hard as I can now (no matter what the side effects of antibiotics), in exchange for feeling better down the road. This was the right decision at the time.

Years and years of a full-scale war inside your body, no matter how miraculous, ends up wearing down your soul. When I decided to switch to the Samento-Banderol protocol, I was not expecting to get stronger or reduce my lingering Lyme symptoms. I was essentially calling a truce. A truce meant ceding a certain amount of territory to the enemy. I was willing to give borrelia  burgdorferi (aka the Lyme bacteria) 30-40% of my time/energy/mental space, in exchange for having the rest of my life for myself. To extend the war metaphor, I would need some serious border patrol to keep my enemy on its side of the line. That’s where the herbs came in. Medicinal herbs = border patrol.

WHAT I LOVE ABOUT SAMENTO-BANDEROL

The first thing I love: there are scientists researching this herbal combination. In lab experiments, Samento-Banderol compares favorably to antibiotics, especially on one of the big Lyme issues, biofilms. Thank you, Dr. Eva Sapi, for spearheading this research and breaking new ground on Lyme and biofilms. You are one of my heroes!

The second thing I love about Samento-Banderol: It works. The past year in particular, I have been feeling really good, albeit by ‘I-still-have-Lyme’ standards. The progress I’ve made while taking the herbs is not a giant change, but it’s noticeable. To my surprise, I’m finding I’m more energetic and have more mental clarity than a couple years ago. I’m sleeping better, running further, getting to dance class more consistently and hence dancing better, which makes me so very happy. (Have I mentioned before, in this blog and elsewhere, how happy dancing makes people?)

MY MODIFICATIONS TO THE PROTOCOL

First modification:

The herbs Samento and Banderol come in tinctures (made by Nutramedix and readily available on Amazon, but not at many other places). When Dr. Marty Ross started me on the protocol, he prescribed two doses per day, of 10 drops each of the herbs, working my way up to 25 drops each. I took a dose at bedtime and it helped me sleep through the night. I took a dose after breakfast and it helped me go back to sleep after breakfast, something I was not planning on. In fact, it knocked me out for rest of the morning.

This was not the aim of taking herbs! I had enough of having half my day wiped out when I was on antibiotics. I switched the second dose to after lunch (nap time) and the rest of the day was shot. What to do? 

I’ve never been one for following rules if they don’t make sense, so I tried scaling back the nap-time dose, while increasing the bedtime dose. This gave me more productive daytime hours, and I was sleeping better at night. Finally I scaled the nap time dose down so much I was taking one drop, and then I thought, why bother? I gave up on taking the daytime dose and packed everything into one giant hit at night. (I ran this change by Dr. Ross and he said it was fine.)

FUTHER MODIFICATIONS

The herbs in question, hanging out with some fresh mint in my kitchen

My personal protocol, which has evolved over a couple of years, should really be called the Samento-Banderol-Teasel-Pau D-Arco protocol. I’ve added these last two herbs in at the suggestion of my naturopath, Nesreen Medina. They have greatly reduced some additional symptoms.

The herbs (like antibiotics) are more effective when rotated. Cumanda is another herb I rotate in, often dropping out Banderol.

For those who aren’t on blood thinners: I found taking these herbs in conjunction with blood thinners is important. (I’m on Heparin and Lumbrokinase.) At least according to my schematic understanding of Eva Sapi’s research, these herbs and Chronic Lyme are all about biofilms, which are the biological chain mail borrelia burgdorferi weaves around itself. Blood thinners assist in breaking down and clearing out biofilms.

Stay tuned. More on my implementation of the Samento-Banderol protocol soon!

ANOTHER LYME PATIENT ON THE MEND and MORE TREATMENT OPTIONS

For this post I'd like to share a recent email exchange. Mimi asked for a Lyme doctor referral years ago. I was delighted to get an message from her a few weeks ago, and to read she's now doing very well. She's taken a different route with her treatment than mine, so I thought this would be a good way to share some of her tips--straight from her own keyboard!

Beautiful vegetables! For both me and Mimi, diet has been a big part of our treatment plan.

(Painting: 'Plate of Asparagus with Carnations and Grasshopper' by Giovanna Garzoni, 1600-1670)

Hi Noelle,

Remember me? I feel like I've been meaning to email you for years to thank you and I am dreadfully sorry that it has taken me so long. You helped me so immensely during what was the worst time in my life and I just wanted you to know that I did and still do appreciate your support during my Lyme treatment.

I hope you are doing well and healthy. 

Thank you,

Mimi

***

Hi Mimi! 

Thank you for the thank-you! Yes, I remember you! It sounds from your email like you're doing a lot better. Don't think I deserve too much credit, just referred you to the right people, but I'm sooo happy if it helped.

I am doing much better, too. 

Best,

Noelle

*****

Hi Noelle,

I'm definitely doing better than I was back then. I hope to never feel that terrible again, but I'm glad I went through it now.  I ended up stopping antibiotic treatment at 16 months because, I couldn't digest food or absorb nutrients and I couldn't function in my daily life. The GAPS diet gave me back my life and helped heal my gut significantly. Somatic Experiencing therapy has also greatly decreased the emotional load on my system and improved my resiliency. Years ago, Dr. Nesreen Medina recommended me to an SE therapist who was also on of their Lyme patients and I still see her today.

I have never really stopped treating, I just switched to natural treatments (acupuncture, herbs, plant stem cells, essential oils) and found that I respond better when I'm not at war with my microbes. I was able to get pregnant again and found that I am one of those lucky people whose immune system actually does better while pregnant so I felt better than I had in years. Too bad I can't stay pregnant.

; )

My daughter is 1 1/2 now and healthy as a horse and so far my 6 year old son doesn't show any symptoms either. 

I'm still symptomatic, but certainly functional. A few months ago I added Doterra essential oils into my protocol after watching a cool webinar where a woman healed herself from Lyme using only the antimicrobial oils. Cool stuff!  I'm also working on re-programming myself and telling my 70 trillion cells that we don't have Lyme anymore. So the journey continues, but in the end it is all positive improvements so I keep working on it.  

Thank you again and I wish you good health!!

Mimi

****

Hi Mimi:

This is all wonderful to read! I am wondering you would mind if I put your email on my blog? (It's a blog about recovering from Lyme.)  

Recently I've received requests from Lyme patients for information about my medical plan (i.e. what works) and I have resolved to get more positive and practical info up on my blog. I had been neglecting it because I was feeling better and not thinking about Lyme so much! 

I've ended up doing something similar to you (minus the pregnancy). I stopped antibiotics and switched to herbs and recently the anti-inflammatory diet. My quality of life is much better, I have less brain fog and more stamina on Samento/Banderol/Teasel. But I also think having done a few years of antibiotics helped. I don't think I'd be as strong as I am now if I had done the herbs alone. I'm curious about the GAPS diet and some of the other things you mentioned. I'll look them up! 

Best,

Noelle

*****

Hi Noelle:

Of course you can include anything you would like to.  I love spreading the word about treatment options. You can slice and dice whatever I wrote and in case you want to include some links....

Here is a link to the Woman's webinar who used the Doterra Oils and another link I found just browsing:

http://aishaharley.me/tag/doterra-lyme/

http://www.faithfulwellness.org/lyme/

Here is an overview on the Somatic Experiencing therapy which helped me miles beyond what standard talk therapy was able to achieve. It has shown me that many of my symptoms are actually psychologicial and I have had sessions where I walked in feeling like I needed to crawl back in bed and walked out feeling energized with my symptoms alleviated (nausea, headaches, brain fog, pain  http://www.traumahealing.com/somatic-experiencing/

The Gaps Diet (Gut and Psychology Syndrome) is all about healing and sealing the gut with bone broths and fermented foods and within 6 weeks on the Intro Diet, I gained a much-needed 6 pounds, could digest food again, tolerate dairy, absorb nutrients, my spring allergy headaches were almost nonexistent and I wasn't starving all the time anymore. Plus my anxiety was gone. I felt stronger and was able to get pregnant 3 months later.  Since then I have done the GAPS Intro diet 3 times and my body goes into serious healing mode each time. I usually experience extreme fatigue and some die off in the first week and I sleep my best while on the Intro diet.  It is an amazingly balancing diet. You will either gain or lose weight depending on what your body needs. I have proof of that because I gained when I was gaunt and then I did the Intro again after pregnancy and lost a few extra pounds I didn't need.  I have never been able to stick to the full GAPS diet for the recommended 2 years for someone like me, but I still get great benefits from the Intro and have incorporated parts of it in my ongoing diet. 

Links:

Author's site: http://www.gapsdiet.com/

http://primaldocs.com/opinion/lyme-disease/

http://www.lovingourguts.com/what-is-gaps-2/

Dr. Elizabeth Hesse Sheehan is my primary (currently on maternity leave) and although I have had infrequent visits, she is the one who recommended GAPS, Plant Stem Cells and Doterra Oils. http://www.experiencehealth.info/default.html

Cheers,

Mimi

Another painting by Giovanna Garzoni: Chinese Bowl with Figs, Cherries, and Bird

BE A STATISTIC! IMPORTANT SURVEY FOR LYMIES!

Lymedisease.org has a new survey, pertinent to possible changes in how Lyme testing in regulated. Here's the link:

SURVEY

It only takes ten minutes! Lymies, please take the survey so researchers, doctors, and lawmakers can take our real experiences into account, and we can make progress in diagnosing and treating this disease.

You will feel this good after you take the survey!

UPDATE

It's been six months since my last blog post. A busy, happy six months that might possibly justify my neglect of this blog.

I've struggled so long with ups and downs of Lyme treatment, and it seems natural to keep the blog up when Lyme is more at the forefront of my life. When I'm feeling well I want to push Lyme to a corner of my brain so I can work on my short stories and find an agent for my memoir, not to mention dance, read, run, and bike up to the pool while I yak away with my buddy Emily (then swim for 45 minutes and take the long way home, yakking away again).

Dancing with my friend Estela in the Seattle Solstice Parade this June. (I'm on the right. Yes that is a band-aid on my leg from giving myself a heparin shot right before the parade!)

Then I got a gentle reminder that when I'm feeling strong and the universe is showering me with luck, I should remember my blog.

It came when I put a profile up on OkCupid. Yes it was time to start dating again! I'd been gearing up to date for a while, even taking some selfies when my hair was looking good because I knew I would need photos.... But I was mostly putting off online dating because the thought made me nervous. By early September, though, the time was ripe. I gathered my best photos and typed OkCupid into the search engine.

I've been sick for so long that I've racked up some experience dating while chronically ill. Not that I have any idea what I'm doing, or have a sure-fire strategy for explaining this confusing illness to potential boyfriends. But one thing I do know is to be upfront about it. There are plenty of guys out there who probably don't want to take on this added complication, and I'd rather not waste my time meeting them. So I mentioned Lyme disease once or twice in my online profile.

To my surprise, within 24 hours of putting myself "out there," I was fielding messages about Lyme disease. And I don't mean, "You're so beautiful and intelligent and I don't mind at all that you have an illness." I did in fact I did get that type of message, but these were not what flummoxed me. What threw me were messages asking me who my doctor was, what type of testing I'd had done, and specifically how I was treating Lyme.

Help! The separate worlds were colliding! I was just trying to maybe have coffee with someone single and attractive, and instead I was getting sucked back into the quicksand of the Western Blot and the Burnher Protocol? Would I ever escape Borrelia Burgdorferi, for even just a second?

And then I calmed down. It was only two guys. One was in the process of getting diagnosed and had randomly come across my profile, he said. The other seemed to have done a deliberate search for Lyme on OkCupid because, he figured people on dating websites were clearly doing better than so many people out there with Lyme. Pretty damn smart of bachelor # 2.

And then I remembered how starved people are for information about what works. And how few people who get better take the time to share their success strategies with others.

I remembered that on this blog, my posts on medicine get the most hits (no, the world at large is not so interested in my personal life or my humorous stories about friends, family, and pets). People are looking for information. I know that. I was there myself. Support groups can sometimes be great, and sometimes make you feel like someone just destroyed every map that was ever made. Certainly this is an illness with no good map.

So here's what I can share.

I am no longer trying to beat this illness into complete submission. At this point it doesn't seem realistic. I'm accepting with as much grace as possible that Borrelia Burgdorferi has a partial hold on my existence.

It's not so bad, compared to where I started. For years I spent all day in bed, often crawled on hands a knees to get to the bathroom, or on 'good days' walked one full block for exercise. Yes, my current relationship with Lyme is far better.

Currently, Lyme is still woven throughout my day. Scarcely an hour goes by that I don't think about it in some way or other. I count on dedicating ten hours each night to sleeping--although I'm not asleep the whole time, I need that much time getting ready for bed and in bed in order to sleep the eight or nine hours I need. I also take a couple short naps/meditation sessions during the day.

I have the luxury of pursuing my career from home and my house is a carefully controlled place, with no toxic chemicals, no mold, vacuumed to the hilt. (And somehow there's still dog hair flying around!)

As for Lyme-killing meds. YES. I am currently on a combination of anti-microbial herbs:

Teasel
Pau D'Arco
Samento
Cumanda
Banderol
Neem

My hero of a scientist, Dr. Eva Sapi, has done research on Samento and Banderol in combination and found them to be more effective than certain antibiotics, in certain Lyme scenarios. (I am paraphrasing one of my doctors here. Please don't take this as bona fide medical information--just trying to explain how I got to this combination of medicine.) My naturopath, Nesreen Medina, suggested including the Teasel, which made a huge difference for me in my allergy/congestion symptoms. We added the Pau D'Arco because I have a history of parasites from my time in Mexico. Neem, ditto. Also it seems to help with sleep.

Before I started these herbs, I was on very high doses of antibiotics, for years. I don't think the herbs alone would have been significantly effective to kill off Lyme. Not for me. But they are good at keeping it in check and helping me make slow, noticeable progress. (Less brain fatigue, longer runs and swims, etc.)

At any one time I'm on 5 out of the 6 of the herbs. This allows me to rotate, which is important because we know this bacteria is really good at resisting whatever you throw at it. So the rotation keeps beating it back from different angles.

I take these things before I go to bed. They are liquid drops and I have to count them out, which is annoying at the end of the day, but so be it! When I first switched to herbs, Dr. Marty Ross prescribed them to me twice a day. I tried taking the second dose before getting out of bed in the morning, or at lunch--meaning right before my afternoon nap. Either way, that second dose had me essentially unable to function for a large part of the day. So I cut it down to just one big dose at night. This has me sleeping through the night (mostly) and (mostly) alert during the day.

I also take lots of other pills: vitamins, anti-inflammatories (quercetin and bromelain), and herbs such as burdock to support my liver. I'll explain these in another post. That's it for now. It's time to go running.

Recent photo while organizing my medicine. Yes, it's still complicated! And it's worth it.

TRADING OFF GETTING OFF FOR GETTING ON

The latest installment in the "getting off" series.



More pills than I'd like to be taking, but less than I was taking before.

Four months ago, I stopped taking my antibiotics, my Lyme-killing herbs, my Ayurvedic liver support pills, my twice-daily injections of the blood thinner heparin, and the three doses of Cholestyramine, which was killing my appetite and making me constipated. I cut out iodine and B12 tablets and drastically reduced Vitamin C, multivitamins, and enzymes. I put away out other pills and powders whose names I can't remember now. I'd been taking each of these things because they each helped with specific, hellish symptoms of Lyme. Each pill or injection was warding off some aspect of misery. All together, however, they added up to so much medication that it was difficult to leave the house, eat meals at the time others were eating, or have a phone conversation without interrupting it to swallow something.

The only way to know if I could have a normal life (or a more normal life) was to plain-old stop taking stuff. But stopping taking stuff when that stuff has saved you from being too sick to walk or read or watch TV--well, it's frightening.

"Congratulations!" my doctor said. "This a big step for you to take."

"This is courageous!" said my naturopath.

"It's really, really brave," my mom said. (I was staying with my parents while I went through these medical adjustments.)

I was ready for the Powers That Be to reward me for my bravery. I was thinking all this medicine for so many years might have even cured me of Lyme. I might just not need it at all. I'd have to wait and see.

For about a month, I was OK.

Then I had trouble sleeping. I got back on the herbal protocol for Lyme. I felt stiff and fatigued getting out of bed in the morning. I ratcheted up my Vitamin C. I was better, and then worse again. I added a third herb for Lyme.... Still, I resisted letting things get too fancy. No injections, no appetite-killing drugs, no enemas.

I landed at more or less an equilibrium of feeling more or less how I had while taking a zillion medications a day, only now I was taking six or seven.

Then a tick bit me--which was testimony to how reality, unfortunately, is  not a double-blind scientific study. I decided to take antibiotics for the tick bite, and things got zooey for a few weeks. When those weeks were over, I went more or less back to where I'd been before the tick bite.

That is to say, in the ballpark of more or less; approximately more or less. I was in a different universe from being depressed and fatigued from antibiotics. I wasn't, however, in the universe of feeling ready to move back to Seattle and into a new house as a newly single person. I had my plane ticket back to Seattle, I had a house my tenants had just vacated waiting for me. I'd scheduled movers to take my things from my ex boyfriend's apartment, and I'd told all my friends I was coming back.

And I was scared, because I simply did not have energy for this looming situation.

Thirty-six hours before leaving for Seattle, something clicked. Fatigue, I thought. Thick blood. So I added in one more supplement, lumbrokinase, which is an enzyme that thins the blood. My energy shot back up immediately.

So now I'm back on the Boluoke brand of lumbrokinase. It's not heparin, which I took for years and requires an injection and left bruises all over my body. I can buy Boluoke on Amazon, meaning it's easy to keep in stock.

The reality is my experiment of getting off as many medications as possible is not going as hoped. The reality is being brave doesn't mean you get what you think you should get.

Given reality, I'm glad to be back on Boluoke lumbrokinase. It hasn't cured me of every last Lyme symptom, but I'm in Seattle now and handling the chaos of moving and setting up house with more energy and ease than I had imagined was possible.

THE NO-TICK-NEWS BLUES

(I wish I knew who did this illustration, so I could give credit!)

It has been three weeks since I found a tick had bitten me, apparently while or right after I was swing dancing in urban Washington DC. The next day I FedExed the tick to Igenex, Lyme medical labs extraordinaire, to be tested for Lyme and other diseases. I started taking antibiotics immediately, and thought I'd hear back from Igenex in one week's time.

But as of this moment, there's still no word. The receptionists at Igenex (I've now called several times) have told me it may take up to three weeks, and taking into consideration that today is July 4th, Monday July 8th is the most likely day I'll get my results.

Meanwhile, the doxycycline and biaxin Dr. Marty Ross prescribed have put me right back into the dark heart of Lyme disease-- fatigue, stiffness, psychological misery, and brain fog. Samsara, Sartre, Sisyphus, the works. All this could be die-off from the Lyme germ that took up residence in my body some fourteen years ago. Or it could be the result of killing off the new infection. Without the lab results, there's no way to know.

Four weeks on antibiotics is the most conservative approach to prevention after a tick bite. Much as I'd like to be in a happier place, I decided yesterday in my appointment with Dr. Ross that I'd keep taking the antibiotics, given the lack of information. Even if the Igenex results come back negative, I'll have no regrets. This isn't the time to take chances.

YOUR TICK CAN NOT BE RETURNED TO YOU

"Once your tick(s) have been processed, the tick can not be returned to you" -from the IGENEX labs mail-in tick form.

My tick will arrive at IGENEX this morning, to be tested for Lyme and all possible co-infections. In my appointment with Dr. Marty Ross yesterday, he said it was good I took quick action on that, and good I took my left over Biaxin (Clarithromycin) right after I removed the tick.

(If any of this is confusing, read the previous post.)

I am now taking doxycycline, because it should prevent Lyme and also Erlichia and Anaplasma, which the tick (or my tick, in IGENEX's view) may well have given me.

Dr. Ross also asked how swollen my tick was. This was something that in my dumbfounded state I hadn't considered, but once Dr. Ross asked, I realized my tick was not engorged at all. It was as flat as, well, a tick.

From that, Sherlock Holmes, at least, would deduce the tick hadn't been biting me for long. Good.

Sherlock might also deduce the disgusting critter might have actually crawled onto me while I was swing dancing, or while I was in the car coming home from swing dancing. Two days before, my father had driven the car to a place in Maryland where there are ticks. (This is a place I do not go, primarily because there are ticks.)

At any rate, the absolutely most likely scenario is this tick hopped onto a nice, warm mammal in exurban Maryland or Virginia, and that cozy mammal hopped onto fossil-fuel transportation into the city, where the tick decided to explore a bit, and then, maybe dizzy from swing dancing, it took refuge in my armpit. And now it's won a free, one-way trip to California and an inside view of IGENEX labs.

***

THE CONTRARY CONVALESCENT

The Convalescent, Gwen John 1924

I love this painting by Gwen John, called "The Convalescent." It is so peaceful! It is also a world away from how I've been feeling about my own convalescence, i.e. since I stopped my Lyme medication on April 5th.

According to Merriam Webster Online, convalescence means the 'gradual recovery of health and strength after disease.'

I do not want to have anything to do with gradual.

'Gradual' is in fact the one word in this definition I would like to do away with! I’m OK with taking a nap and getting plenty of sleep. I’m OK with a few leisurely walks, and time spent reading. But I also want to be running with my dog Cleopatra, going dancing four nights a week, and spending several hours a day writing. I don’t just want these things. I’m desperate for them now. If not now, then in a week.

Yesterday I had an appointment with my naturopath, Nesreen Medina. She told me I wasn’t going to get my way. Coming off my Lyme meds and the crazy amount of supportive medicine I was on is a process that will take easily three months.

‘Think of everything you were taking. That’s a big adjustment for your body to make,” she said. “It’s huge!” Meanwhile, Nesreen said, things will feel like a pendulum, swinging back and forth until I find my center.

There’s no way around it. It will take that long for my endocrine and hormonal systems to get their groove back; that long until I see where I land.

Meanwhile, I can count on erratic energy, and more hours than I’d like on the couch. I can count on not making it to every dance class, and not writing as much as I'd like. 

This wasn’t what I wanted to hear, but ultimately it’s good to hear it. It quiets my spinning worries about why I’m not feel better yet. And it means I can come up with some good strategies for getting through the next few months.

Basically, it comes down to patience. Something I need to teach myself over and over. Just when I think I've got the hang of patience, things change up again and I’m smack in the middle of impatience.

 

Patience means accepting reality, and adjusting to what’s going on right now. If there’s one thing I’ve learned at my ripe old age, it's this: once you embrace reality, everything opens up, and change is possible.

 

CHRONIC FATIGUE SYNDROME and LYME DISEASE

From 1999 to 2007 doctors told me I had Chronic Fatigue Syndrome, or that I had food allergies, or that I had a psychological problem.

My family doctor ran a test for Lyme disease that came back negative. I didn't know that test was wildly inaccurate. She didn't either. She implied I'd made my illness up, and told me if I exercised a little more every day I would get better. That bad advice haunted me for years.

I'd been a cross country runner and a rugby player. But now every time I tried to walk a few blocks, I ended up in bed for days.

"A sick girl" by Mikhail Nesterov 1928

In 2007, a doctor who was knowledgeable about Lyme testing and Lyme disease diagnosed me with the illness. Once I started antibiotic treatment, everything changed.

OPTION B

One month off my Lyme meds, and my labs show low thyroid function, low adrenal function, and low female hormones. I had follow-up tests this week, to see if my pituitary (a gland at the base of the brain, that's like the leader of the hormone big band) is working correctly and if I have enough cholesterol to even make the hormones I need.

The good news from my appointment yesterday is my pituitary does not have a tumor, and it is not in any other kind of trouble. My pituitary is in fact very energetic! In Dr. Ross' words, it's  "screaming" at my thyroid, ovaries, and adrenal glands to make the hormones my body needs.

So why aren't my nice little glands doing what they should?

Cholesterol isn't holding them back. My cholesterol, much to my surprise, is high. Good high. HDL/LDL ratio as it should be, but the numbers are high! How did this happen, while I was weighing all of 112 pounds due to Cholestyramine, the horrible liver medication I was on?

Well, to compensate for Cholestyramine, I was downing the dark chocolate, guacamole, over-easies, nut butters, heavy cream from grass-fed Jersey cows, and whole milk yogurt from ditto cows, for breakfast lunch & and dinner. Six weeks ago I stopped cholestyramine and kept up the fatty foods. Should I have been surprised my cholesterol was that high? Well, I was.

Cholesterol is the raw material of hormones and endocrines. So why such scant e's &h's?

There are two options:

A) Permanent damage from Lyme
B) Temporary damage from all the Lyme meds and supportive supplements I was on.

Dr. Ross was plowing ahead with option A, ready to write me a prescription for thyroid medication and hormone supplements, when I said:
 "Whoaholdonwhataboutit'sjustamonthsinceIstoppedallmymedicationincludingiodinewhichwasmessing
withmythyroidsomaybethesemessagesfrommypituitaryandallthisabundantcholesterolmightworkifwegiveitachance.

And Dr. Ross said, "Yes, come to think of it, it has only been a month since you got off your meds annd your body could just be in an adjustment phase. Let's give it more time. I'll rerun all this lab work in a month and see if there are changes in the right direction."

Phew. Because  my long-term goal is to be on as little medication as possible, in return for as much energy as possible.

For the next month, my goal is to encourage my body to balance itself. That means keeping myself in a healing state for as many hours of the day as possible. Slow breathing, plenty of rest, light exercise, happy activities (like writing and dancing!) and above all, meditation.

THE RESULTS ARE NOT IN

I had my long-awaited appointment with Dr. Ross today to discuss my low hormone levels. He consulted with other doctors and decided he needed to run more tests. There is a possibility I have gone into early menopause. There is a possibility my pituitary gland is not working, therefore creating problems with my adrenal and thyroid function.

There is also the possibility that these problems have been caused by all the medicine and supplements I was on. Which means there is the possibility that a few weeks from now my pituitary gland will start to work as it should.

I have now cut out almost everything I was taking, with the exception of anti-yeast supplements (Candex), probiotics, the anti-inflammatory quercetin, and my adrenal/cortisol supplement (isocort). This last I have cut in half.

This week I put more pills back in bottles than I took out!

I stopped using my two biggest pill boxes, and later in the week I eliminated one more box. Plus, no injections, powders, drops or liquid medicines!

I wish I could say stopping everything else as of a week ago made me instantly feel better. It has not. It has, however, given me more time and way, way less hassle throughout the day. I am still dealing with quite a bit of fatigue. Not the crippling fatigue that had me in bed for years, but my legs feel heavy and my brain lethargic. I'm still going dancing and for long walks, as usual. I run sometimes, but for two miles instead of the four I used to do regularly. I concentrate in spurts, but I'm not exactly in the zone for writing these days, either.

And it's all OK, given there are still issues to work out and still things the tests are picking up.

Dr. Ross also told me today I also have high viral markers: CMV, EBV and HHR6. This in itself could cause the fatigue.

But the hormonal mystery comes first. I need to deal with viruses from a place of strength. I will wait a few weeks to give my body a chance to recalibrate after all the medicine, and then I'll get the tests for my pituitary, thyroid, adrenals, and cholesterol.

Thankfully, I'm still sleeping plenty these days, and now it's time to go to bed.

GETTING OFF LYME MEDS

Third in the "Getting Off" series

I had a phone appointment with Dr. Marty Ross two hours ago. I told him how much I'd cut down on my supplements and other detox activities, and that it hadn't effected my sleeping at all. Then I asked about stopping the Lyme treatment itself.

For the past several weeks, each time I counted out my thirty drops each of Samento and Banderol, and my twenty-five drops of Teasel, and every time I got ready to swallow my giant Biaxin tablet, one thought popped into my head:

"I don't want to take this anymore. It's making me feel bad and I don't need it."

And today when I asked Marty what he thought of stopping these things, he was all for it.

I'm still feeling some fatigue, at this point it's not clear what's causing it. It could be that all the stuff I'm on is putting my body into a tail spin. The best way to figure it out is to just stop.

The Lyme might be gone. If it isn't, symptoms will come back six to eight weeks from now.

There is also the issue of my low hormone levels, which I mentioned two posts ago. Marty said he will consult with doctors who have more expertise than he does on these issues, and he'll tell me what he finds out in an appointment next Tuesday.

Meanwhile, I'll continue to eat well, meditate, exercise, and just not worry too much about anything. (Let's see if I can manage that last one!)

SWING AND A MISS

Dr. Mahat called me a few hours ago to say my CAT scan showed nothing abnormal, except for a small cyst, which is usually due to a clogged mucous gland, and which Dr. Mahat said should cause no symptoms. To which I say, phooey. And also, I will not be deterred.

I'm not saying the cyst is the problem. I am, however, taking the test results with a healthy dose of cynicism. Anyone with Chronic Lyme knows medical tests are not always 100% accurate.

What I do know is that three weeks ago I took matters into my own hands, medically speaking. Into a teaspoon of water I dissolved two pills: my antibiotic Biaxin, and my antifungal ketoconazole. Both are supposed to help with any sinus infection I might or might not have. I poured the resulting liquid into an empty herbal tincture bottle, adding in a couple of drops of Teasel because it also had a good effect on the (possibly real) sinus infection. Lastly, I screwed an old nasal spray top onto the herb bottle, and voila! I had my own sinus spray. For three weeks I sprayed the liquefied pharmaceuticals into my left sinus, then lay on my left side and carefully angled my head until I felt the spray dripping down into the itchy, back passages of my sinus.

Here's my DIY nasal spray, in a handy spot on my desk.

So OK, this was my idea, not a doctor's. However, I ran it by Dr. Ross two days later, saying I planned to keep going with it, and he didn't tell me to stop. I also told Dr. Mahat about it in my appointment yesterday. He did not say "bad idea."

Empirically, my DIY approach has been working. By the end of three weeks, my sinuses felt better. Less fluid filling up that back passage by my ear. Less runny nose. I actually had no need to stuff my pockets with Kleenex every time I left the house. I was no longer waking up in the morning with my sinuses filled with fluid. The coffee grinder no longer sounded like an airplane lifting off.

I stopped the nasal spray two days before going to Dr. Mahat. I didn't want it interfering with his diagnosis. And now, on day four off the spray, my symptoms are coming back.

Dr. Mahat might have been a strike, but not strike three, and not the third out. As Yogi said, it takes a fat lady, and she's not on stage yet.

I have an appointment with a different ENT on April 24th, to get a second opinion. Meanwhile, I'm going to restart the sinus spray. Maybe I'm crazy, and I don't have an infection after all. Or maybe, just maybe, my own crazy home brew will kick this imaginary or un-imaginary sinus thing in the butt.