Treatment Recap: Month 6

Wow!! 6 months of treatment complete. It’s hard to believe I’m already so far down the road… and yet it feels like just yesterday I started this journey. I’ve made soooo much progress since July. I honestly never expected to be this well, this fast.

Most days, I feel pretty darn close to normal. I have reminders of my illness: ringing ears is still constant, my vision is still very poor, I often sleep badly and have vivid dreams when I do. I get flaking skin on my eyelids, and my muscles still tend to over-contract when exerted. I still have tired days sometimes. But overall, I’m sure feeling a lot like a normal person.

I get through whole work days, I walk at least 10,000 steps a day, I socialize with friends, I’m mentally sharp, I’m (usually) able to do more than one “big activity” a day now. It’s pretty awesome!

I did experience a bit of a downturn early in December when I was kind of unceremoniously dumped by my partner of over 5 years. Although not an entirely surprising split (we’ve struggled ever since my diagnosis, when recovery became a major priority in my life), it was still very painful and stressful. Symptoms of pain, fatigue, insomnia, and night terrors increased for a couple of weeks. But, thankfully, as I’ve gotten back into my normal routine and am finding peace in the path ahead, I have normalized for the most part.

Month 6 brought the addition of a new treatment modality: Flagyl for cyst busting. Bringing my grand total to 4 antibiotics now, I am pulsing Flagyl 4 days a week, then off for 3. It’s definitely kicking some cyst ass… In addition to standard herxing fatigue, I have had an increase in symptoms of dizzy / vertigo spells along with balance trouble… stuff I haven’t experienced in over a year. Yeesh. While unpleasant, I am happy to handle the flare ups knowing it’s progress!

My liver and kidney enzymes, which we check every month, continue to show I’m tolerating treatment just beautifully… which I know is a gift not everyone is so lucky to have. My diet, my detox routine, my juicing…. it’s all paying off. My doctor insists I am getting well primarily because I follow the (rather intense) routine. Yay!

As with all monthly treatment recap posts, let’s do the list of symptoms I currently struggle with:

  • Bad balance and dizzy / vertigo spells – returned symptom thanks to a Flagyl herx
  • Occasionally plugged, clicking ears and stuffy sinuses – likely also a flagyl herx, these are minor symptoms of slight brain swelling (cysts love to hang out in brains; this makes sense)
  • Poor vision – 1000mg of Taurine 2x a day continues to help, I’m about 80% now and expect new prism glasses in January to help even more
  • Ringing ears – this has never even remotely gone away
  • Dry / stinging / red eyes – A common symptom of Bartonella
  • Skin abnormalities – flaking eyelids, terribly bruised legs
  • Muscles still over contract with exertion – I tried my first workout this month, a gentle yoga class, and my back did lock up. Bummer. But I don’t notice this without exercise anymore which is awesome.

Things I noticed slightly less of this month:

  • Poor sleep (minus the couple weeks surrounding my breakup)
  • Vivid dreams – I still have vivid dreams, but they’re less horrendous in nature, and true night terrors are downright rare these days.
  • Hyperness – I think the flagyl herx has increased my fatigue, I need more rest these days and actually FEEL tired. It’s a welcome change.
  • Pain in the lymph nodes (I did begin Lyme massage with a local Lyme expert)
  • Stiff neck, headaches, numbness and tingling, foot pain and joint pain all remain quiet

The 3 big changes to my treatment protocol in month 6 were:

  1. I added Flagyl to my antibiotic cocktail as a cyst buster (current combo = Bactrim, Cedfinir, Doxy and Flagyl)
  2. I did my LymeStop recheck on Dec. 23rd, 2015
  3. I started doing Lymph massage 2x per month with a Lyme specialist to increase detox

Of course I’ve continued the long list of healing efforts I gave in my 5-month recap blog as well. It’s a full time job, this Lyme recovery! But I’m more than willing to work for it.

Overall, 2015 hasn’t ended the way I’d hoped. I lost a great love and my best friend, a dear member of my chosen family passed away unexpectedly on Dec. 23rd, I spent the holidays sick, mourning and alone… and of course I’m adjusting the whole vision of my future as the breakup took with it the dreams I’d once counted on. BUT, I am determined to focus on the positive. I am healthier than I ever imagined, I have friendships that are more solid than I’ve ever experienced in my whole life, and I have a whole big beautiful blank slate laid out in front of me for years ahead. I’m grateful for every damn moment here on this planet, and that only increases with each bit of health I regain.

2016 is going to be a very beautiful year.

Month 6

Trying an alternative treatment: LymeStop re-check update

As you guys know, I tried an alternative Lyme treatment called LymeStop in mid-October. That treatment includes 6 magnet therapy treatments in 3 days, and a re-check 3 months later. Well, I just went in for my re-check on Dec. 23rd, 2015.

[DISCLAIMER: Dr. Tony’s treatment also usually includes many supplements, which I did not take as a) the ingredients in some of them freaked me out and b) I am currently also following the Horowitz protocol and did not want to cross contact the different drugs in my system.]

Let me tell you, it was quite an undertaking to visit Northern Idaho in late December. I wanted to get it all done in one day, so I flew from Seattle to Spokane, rented a car at the airport, drove an hour to Coeur d’alene Idaho, had my super-speedy appointment, drove back to the airport and flew home same day. Of course that sounded like a brilliant idea when I booked it in October… but when I woke up on the frozen pre-holiday morning at 4am to begin the journey I realized what a fool I’d been. Heh. And, as a fun complication, there was 2 ½ feet of snow in Spokane. HA! BUT I made it safe and sound, and by the grace of miracles alone managed to make all my necessary checkpoints on time. I was even able to upgrade from my shitty 2-wheel drive, super lightweight economy rental car to the LAST 4 wheel drive model Alamo had available upon landing. The trip was truly blessed.

So, how was the appointment? Good! According to Dr. Tony, I am free of all Lyme bacteria. He found a bit of Bartonella in my bladder and some remaining aspergillus in my ears. He treated those and said I didn’t need any further rechecks. I should expect to be symptom free within 4 months. Hmmmmm.

Needless to say, I remain incredibly skeptical of this treatment. There are some things about Dr. Tony’s treatment that I just find very very hard to believe… like that my body can specify the exact dose of all supplements I need (including those with a dozen or more ingredients), or that he can measure down to the exact percentage point how well my organs are working. MAAAAAAAAAAAAYBE??

But there’s no doubt I’ve improved. 6 months into treatment – which CONTINUES TO INCLUDE ANTIBIOTICS – I am functioning at about 75-80% these days. This is a HUGE improvement from October when I first saw Dr. Tony. Since I am doing two modalities of treatment simultaneously, it’s truly impossible to know what impact LymeStop is having on my recovery. And I know that’s frustrating for folks wanting a testimonial. I am often asked, incredulously, “But how can you tell what worked??” I can’t!! And I don’t care! I am not a science experiment and I don’t owe anyone statistically significant results. I’m just a lady desperate for wellness who went for everything that might help. And something is. I don’t care which!

And that’s my answers on LymeStop: It might have helped! It’s possible. I did see an amazing turnaround in my health beginning in October and November, just after my treatment there. Of course, that’s also the same time I started Doxycycline, Cefdinir and Bactrim… a combination of antibiotics that I remain on today and that seems to do very well for me. **Shrug** I am still herxing when I make treatment changes, and I still experience symptoms of Lyme every day… so I can tell you that I certainly don’t FEEL cured.

In any case, the important news is this: Healing is happening in me. So I know it is possible. I owe a 6-month treatment update blog here soon and hope to share even more info about the great success I’ve had.

In the meantime, here’s some beautifully snowy pictures of beautiful Coeur d’alene Idaho.

idaho1Idaho2Idaho4

Coping with Bartonella Foot Pain

A full two and a half years prior to my Lyme diagnosis, I experienced what I now know to be one of the hallmark symptoms of Bartonella. It started with numbness in my feet and feeling like I was walking on rocks. That first day, I literally removed my shoe to get a rock out. No rock!

Since I was already living with multiple sclerosis, which can cause sensation abnormalities such as this, I headed off to my neurologist. We were a little bit stumped when my MRI came back without any new lesions (usually there’s a lesion to accompany sudden symptoms) but he treated me with steroids anyway. It never got better.

I went on to be diagnosed by a podiatrist as having plantar fascittis. It was a little odd to me because I am not at all overweight, and I don’t partake in hardly any running or other high impact exercise that’d affect my feet.

Nonetheless, I started treatment for PF. This meant acupuncture, physical therapy and a lot of at-home care. You name it, I tried it. And even before I found the true cause of this pain, I was able to get it very well under control. The things I found worked best for me include (roughly in order of impact):

  1. Never ever going barefoot, not even on midnight trips to the loo. At all times I wore something with really good arch support:
    • Anti-pronation sneakers; I went to a running store and they analyzed my gate and made a recommendation.Asics Gel Kayano as the model that work best for me.
    • Sole inserts used in shoes that otherwise have NO support (I found adding them to shoes with a little support worked even worse… doubling up is as bad as going without). Think, Converse sneakers. Size shoes up half a size to make room for the inserts.
    • Sole flip flops for around the house.
    • As I improved, Birkenstocks and Halfinger brand slippers also became options.
  2. Using this pro stretch at least 2x a day to keep my hamstrings, calves and Achilles lose.
  3. Using a belt to stretch stretch stretch my Achilles.Seated-Calf-Stretch
  4. I strengthened my feet by standing on my tip toes 25-50x in a row 3 times a day. First both feet at a time, then one foot at a time (all weight on that foot).
  5. Rolling my feet on a frozen water bottle 2-3x a day to reduce inflammation.
  6. Keeping a lacrosse ball under my desk to roll my feet on 2-3x a day to break up scar tissue.
  7. Using the stick on calves to keep them loose.

Now that I am properly diagnosed with late-stage Lyme disease and am treating my Bartonella co-infection, my foot pain is soooo much better. I still haven’t given up my arch support (honestly, it’s possible I never will be able to go without this) but I find I can spend short bursts barefoot no problem. Those midnight trips to the bathroom, they feel wild and free these days.

Hope these tips help someone out there still suffering!

Treatment recap: Surprise ending to month 5

Well, after 2 glorious months of feeling so much more like myself, it seems I’ve hit a bit of bumpy stretch in the road. 

I’m struggling. I’ve had a consistent and increasing onslaught of symptoms that I haven’t experienced in a while. The ringing in my ears is way louder, I’m having trouble staying asleep, when I do sleep I’m having nightmares and night terrors, I have heart palpitations and incredibly knotty, painful muscles. Even my vision is blurrier. 

But the good news is, I’m still doing okay on energy and mentally I feel very much like myself still. So… this is totally livable for now. I just don’t like the trajectory.  

This is the first really noticeable setback I’ve had since having made so much progress, and I’ll admit, I’m not sure how worried to be. BUT I know treating Lyme and coinfections is a marathon not a race. And I suspect there are a lot of ups and downs on that long road. Maybe this is just a bad week and there’s nothing to be done but wait it out. Maybe I’m not responding as well to the current combination of meds and I need to make a change. In any case, I know I’m still headed for wellness. I’m checking in with my Lyme doctor on Friday and I am absolutely sure she’ll have some ideas for me. 

In the meantime, I’m going to take it easy, get to get as much rest as I can, reduce stress whenever possible and think positively. I still have so so much to be grateful for.