Lesson 857 – Lyme Disease Thursday – Status Week 1

I’ve been on an antibiotic since last Tuesday. Over the years I’ve had discussions with our pharmacist every time I pick up a prescription and she said that when this prescription came through, she went “ahhh, so that rash was about Lyme disease.”

Our pharmacists are very Lyme savvy and have been able to give us a lot of good information.

Here’s a picture of that rash that was so strange. (Apologies now to those with weak stomachs)

hey, it's  no worse than a bathing shoot shot

hey, it’s no worse than a bathing suit shot

Note on this rash, this was day 1 – you can see the start of blisters which is why the docs (not Doc Holiday) called it Shingles. Day 2 was when large clusters of blisters formed and also when they changed the diagnosis from Shingles to unknown rash. This looks surprisingly (unsurprisingly to me) like the rash that one of my kids broke out in at the beginning of his “mysterious disease” phase.

The reason I’m showing this is not to gross anyone out (although my kids are mortified that I’ve included a butt shot) but to share that in our house, skin conditions (rashes, itchy sores, psoriasis-like condition) are all symptoms of Lyme disease (along with many, many other symptoms.) So much so, that if anyone complains about a weird skin condition, I’m always thinking, “we should get you checked for Lyme.”

I’m not sure that anyone can say that this (or any) rash is caused by Lyme disease but *I* believe that Lyme disease weakens your immune system to allows symptoms like this rash to occur.

Meds

I take Doxycycline 2 capsules – 2 times a day. It’s a hefty dose that needs to be balanced with a probiotic if I don’t want to get a yeast infection. The antibiotic can be tough on your stomach, so I was instructed to work my way up to the proper dosage, but I’ve had no problem taking 2 at a time *provided* that I drink enough water. There have been times that I have gotten a wee bit nauseous, but a large cup of water stopped that in its tracks.

It also means that my phone is beeping all the time, Doxy needs to be taken 2-3 hours after eating. The Probiotic needs to be taken on a full stomach hours before an antibiotic is added.  I have alarms going off at 10 a.m. and 9:30 P.m. for the antibiotics and one at lunch to remind me to take the probiotic (which by the way has a count of 104 billion – yeah, I know, who figured that one out?)

I’ve become a woman of my phone.

If you go to your Doctor with a bulls eye rash, he will typically prescribe Doxy 1 capsule – 2 times a day for 3-4 weeks. There are some reports that this may not be enough to knock back the disease, so even though you’ve been treated for Lyme disease if you’ve received that dose, you may have complications down the road.

The dose I’m getting is massive, but that’s what docs who have treated chronic Lyme disease use.

And I afraid of superbugs? Am I afraid of resistance? While those are certainly concerns, the doctors that cry out the loudest about resistance are the ones who prescribe long-term antibiotics for years to teens with acne.

It’s a disconnect that I can’t really wrap my head around. If something is needed for treatment, shouldn’t something be given for treatment?

I was all set to throw everything (herbs, supplements) at my treatment plan but then we wouldn’t be able to tell if anything was working and trust me, there is ulterior to my motive. All successes are being relayed to one of my sons who is still greatly suffering from his Lyme disease that went undiagnosed for 5 years (even though we took him to 11 Doctors.)

So for now, it’s just antibiotics and diet.

Diet

Doc. Holiday put me on a no gluten, no sugar, no dairy, no alcohol diet. It sounds impossible right? However with planning and with lots of ingredient list reading, it’s not that bad.

The reason behind the diet is that those 4 substances are the four most reactive in terms of sensitivity and allergies in people. They tend to put stress on a body and if you are trying to heal a body, you’d want to remove as much stress as possible. It’s kind of like keeping the patient quiet until they are strong enough to get out of bed.

Will I be able to go back on these 4 items? Perhaps, but I might not want to – read on.

Breakfast is typically 2 Glutino crackers (sort of like a small Matzo cracker) with peanut butter and salsa (don’t knock it till you’ve tried it) or a chutney or vegetable spread. Along with this I have a cup or two (or three) of coffee (writer, remember?)

Lunch – 3 Bakers makes a *great* gluten free bread. The slices are small but here’s the thing, when you eat gluten free foods, you don’t seem to leave the table as hungry.  A small sandwich fills you up.

I like olive tapenade and sun-dried tomato sandwiches. It’s a combination that satisfies my desire for pizza. I also like peanut butter and jelly, hummus and veggies, and sometimes meat sandwiches.

To lunch I also add ½ of a large gluten free oatmeal cookie (the reason I eat half is because I simply can’t finish an entire cookie) and an apple.

This is the exact same lunch that my kids take to school, sandwich, granola bar, piece of fruit – I figure that if it’s good enough for them, it’s good enough for me.

On the weekends we typically prepare a fried rice, potato or egg dish for lunch.

Dinner – We typically eat a lot of vegetables for dinner and so eating gluten free pretty much meant that I didn’t take any of the bread offered at the table. Meat and vegetables.  I haven’t really had to modify much there.

Snacks – due to my meds schedule, I don’t do much snacking. Fruit (it’s apple season in NH) and some gluten free chips and crackers (from Trader Joes) if I really need to have something are kept near my desk.

So that takes care of gluten and the sugar (there is a bit of sugar in things like that cookie and the jelly but I think the intent was to stay away from gobs of sugar found in candy bars and processed snacks.)

It’s a bit more difficult to eliminate the cheese because I like cheese. I also like butter, especially on my baked potatoes. But I don’t like the phlegm and stomach bloat that I seem to get every time I eat dairy (forget having an ice cream cone – it’s just not worth it.) Although I miss the dairy, reminding myself that it’s not my friend helps.

Alcohol – this is the one that people balk the most at. How can I go without alcohol and does wine count – are the two questions I get asked the most.

I am a beer drinker – don’t do hard alcohol, and I hate those “sugar-sweet bar drinks”, give me my beer.   But I had noticed that every time I’d have a few beers, my gut would always rumble and my joints, particularly my knees would feel worse (much worse) the next day.

The other thing about alcohol is that I was using it as a pain killer. For example, after a full day out with the kids on a weekend, I’d come home, put my feet up and start drinking a few beers, as I’d ice my swollen knees. Alcohol is a great (but very dangerous) pain killer. I can’t really recommend it.

But if you don’t have the pain, you don’t need to kill anything with alcohol, which brings me to:

Current Status

I have noticed a tremendous improvement with my knees. I can bend them and I don’t have as much pain. Last week I had to go down the stairs one step at a time, this week I’m going down foot over foot.

Throughout this I’ve continued to play tennis. My tennis partner has been very understanding and knew that if I didn’t use my joints, even in pain, I’d lose them. Even she noticed a difference in my game this past Sunday.

It doesn’t mean that my knees are cured (I was hit by a car as a child and have some major orthopedic damage) but they are better. That constant joint-rubbing pain is pretty much gone (as is the desire to drink it away in the evenings.)

The bottoms of my feet are improved. The left foot used to be so sore that if it were accidentally bumped, I’d cry out in pain. Still sore but the pain level has gone way down. I’ve also noticed that I can take my shoes off using my feet again – before I couldn’t do that because my feet hurt too much.

My right foot has gone from being completely numb to being partially numb. I can now feel my big toe and two toes over. The rest is still numb.

In the last few weeks before I had reached my breaking point (why do we always have to get to that point) before asking for the Lyme test, I had purchased a cane to help me with walking, yup it had gotten that bad. I was also making decisions like “Oh, I’m not thirsty enough to get up and walk to the kitchen for water” because it wasn’t worth the pain I would feel.

Now I don’t think twice about getting up (but I do think about how amazing it is.)

My muscle twitches and night muscle cramps are gone.

My right tennis elbow (tendonitis) is not as distracting as it was. I go through large portions of the day without even being aware that it is a problem (before, every time I’d set out to type it would hurt.)

Mood – improved. Moms with Lyme disease are never up for Mother of the Year. Oh I still get angry (especially at things like my daughter wearing my shoes to school because she couldn’t find hers) but I’m not reacting with that total, complete and insane rage that I was seeing before.

What this all means

As a scientist (degree in medical biology and ex-microbiologist) I know that because two variables were introduced at the same time, I can’t make the conclusion that my improvement is due to the antibiotics or diet.  It could, of course, be a combination, it could be one or the other, or it could be a placebo effect.

What I can say is that after taking a combination of antibiotics and modifying my diet, I am seeing a great improvement in my health.

Disclaimer, this is an account of my Lyme symptoms and treatment, it is not intended to be used in the treatment of anyone else’s condition. Please consult and work with your physician if you think you may have Lyme.

Let me know if you have any questions about my Lyme symptoms and/or treatment, if I don’t have the answer, I’ll find someone who does.

***
Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at Wendy@SimpleThrift.com

Also, join me on Facebook to find out more about the flock (children and chickens) and see some pretty funny chicken jokes, photos of tiny houses, and even a recipe or two.

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5 Comments

Filed under Life Lessons, Lyme Disease, New Hampshire, Personal

5 responses to “Lesson 857 – Lyme Disease Thursday – Status Week 1

  1. very, very interesting! I was diagnosed with Lyme about a month and a half ago, did the doxycycline, 1 2X daily and there’s no follow up (I called and asked) but I have many of the same symptoms that you’ve described. I had absolutely no rash though, so that’s why my doc thought no lyme, but I insisted. this is extremely helpful to me and I will take it to heart!

  2. I shared this one on Facebook. Thank you for a great overview. I hope you have continued improved health. Diet does amazing things to our body; both good and bad. I know when I have eaten something my body doesn’t like right away. The key is to listen to your body. It will tell you what it needs or doesn’t need. Most people don’t take the time to listen.

  3. Yay! I’m so glad to hear that you’re getting treatment.🙂

    For me, doxy was a miracle drug. I had already been on a gluten-free, no sugar (I didn’t/don’t even allow natural sugars/fruit) diet for about 10 years, and that had been and still is a great help. I wasn’t doing it for Lyme – didn’t know I had Lyme. But my family tends to get diabetes, so I figured I’d get a head start eating like a diabetic.

    But the doxy – WOW! Instant reduction of pain, increased ability to sleep, better mood, better brain function… I took it for 18 months, same dose you’re being given. As long as I was improving, I figured it was worth continuing, but once I plateaued for a period of 3 months, I stopped and switched over to herbal antibiotics (based on Stephen Buhner’s protocol). And I kept on getting better and better.

    For me, the last of my lingering symptoms appear to be thyroid-related. I don’t know whether Lyme set off the Hashimoto’s, or whether that would have happened anyway, but right now, it appears to be my only health problem. My only pain is from fairly advanced arthritis in my hands (hey – I’m a massage therapist – they’re about worn out). All the other issues – back and hips and feet and elbows and shoulders and wrists and neck- are long gone.

    It’s a long road back from chronic Lyme, but well worth the trip. I’m so happy you’re on your way.🙂

  4. I am very sad and distressed to hear about your unhappy Lyme Disease episode and wish you speedy and complete recovery. I am definitely getting older and I’ve had a few unhappy episodes with my health, but I eat fairly well and exercise regularly and take things on a day to day basis and appreciate each day that I stay alive.

  5. tami

    i wish you lived closer, i just made the gluten free pumpkin whoopee pies yesterday!

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