Relapse #1 Treatment Plan

Now that I’ve gotten past the denial stage, I am taking action. I figured it’s worth documenting. I spent significant time thinking about my options. I don’t want to become an antibiotic junkie, nor do I want to give up on having a life again. I need to balance short term (getting out of this) against long term (finding a more permanent way to manage things). In the end I am leaning toward the following plan: start this (and future relapses) by trying something new, but then switch to antibiotics if it doesn’t seem to be working.First, briefly, my symptoms:

  • NEW: stiffness and pain in the joints of my right thumb, stiffness in other joints in my right hand
  • Some cognitive fuzziness (more difficulty reading than writing, memory stuff)
  • Some headaches (though not as bad in the past, and mostly wierd painless back of the head tension and floating and tingling sensations or stiff neck, etc)
  • Frequent sense of imbalance or dizziness, often prompted by rising but not entirely
  • Some shortness of breath at wierd times (e.g. going up stairs fine one day, not the next)
  • Occasional weakness (holding up head, walking, etc.)
  • Frequent napping, 15 mins to 2 hours, despite getting 7-8 hrs every night
  • Insomnia
  • Ringing in ears (the one thing that never went away)

Overall, I am functioning pretty well but have definitely taken a step back from where I was for the last 6+ months. I am more worried about trend than getting from day to day. And this has been building (and increasing in severity) long enough that I feel a need to take action.

So I started with a combination of online research and a visit to my LLMD. I wanted to check that he wasn’t urgently worried about letting this slide for a bit, and since he’s far away (and I happened to be in his town), this also makes it easier to call in a month or two and ask for drugs if things continue to deteriorate. His reaction was disconcerting, but fit my needs. He was definitely not overly worried, and if anything brushed my concerns away as caused by stress (something I believe is a factor, but not the cause of my current situation). He was also concerned that antibiotics could bring things up that would overall cause me to feel worse. So I have his blessing to wait on stronger treatment.

Meanwhile, remembering that nothing I had found online before was as compelling as antibiotics, I started looking for something new. It almost fell in my lap — I was reading the Lyme Disease Research Database blog and happened upon a post about Teasel. Intrigued, I did some more searching. The original post mentions herbalist Matthew Wood (M.S. in herbalism) and his book, The Book of Herbal Wisdom: Using Plants as Medicines. The entire chapter on lyme disease and teasel is available at Google Books. I also ordered the book after reading the introduction and Teasel chapter. Further google searching turned up testimonials (such as this one) support group posts, and so on, all indicating that if it is a good fit, Teasel can be very effective. Recalling my metrics for evaluating a treatment, there seems to be some process data (from Wood’s book), decent experience data, no major safety issues (though if effective, it may raise symptoms as it heals), and no major practical barriers to treatment. Additionally, it feels right. So I went ahead and ordered Teasel tincture, and based on what I had read at the links above, St. John’s Wort (tincture and oil) to go with it. Based on this and my past experiences, my current treatment plan is:

  1. Teasel (working my way up slowly to 9 drops of tincture a day, away from other meds or meals)
  2. St. John’s wort (applying the oil to the back of my neck when it bothers me, considering a regular dose of the tincture as well but it’s hard to do that and avoid the teasel timing wise)
  3. Ledum 30c (the homeopathic remedy for lyme arthritis)
  4. Detox agents (zeolite and herbs, to help my body work through whatever’s going on)
  5. Gut stuff (because I’ve had a lot of gas. Probiotics and bowel rebuilders just in case that’s a factor)
  6. Vitamins (because I had happily stopped eating anything but healthy food for a few months there. I hate popping pills all the time!)
  7. Yoga (aiming for 5x a week @home again, taking a class again)
  8. Sauna (I now have an IR + stones one! Use it whenever I have time, good way to end the day)
  9. Sleep (going to bed earlier if at all possible)
  10. Time management (I had started to LIVE again when healthy and am healthily overcommitted. I have to be very careful not to get behind or things like (9) will get hard).
  11. No wallowing (or 10 would be impossible)
  12. Lots of anger (this sucks! and I want my life back! See it feels good to even say it :)
  13. Healthy doses of talking with friends (to work through 12 and avoid 11).

It’s at least a concrete plan. We’ll see what comes of it. Wish me luck!

14 thoughts on “Relapse #1 Treatment Plan

  1. Thanks for sharing. It looks like a good plan.

    Please keep us up to date on how the teasel works for you. I’ve ordered a bunch and should be starting my teasel tea in the next week.

  2. careful! EVerything I read said low doses only, and used tinctures. Tea ma work, just make sure you read up or consult with an expert first.

  3. Hello again, I haven’t visited your site in a while and this morning I have to questions myself – Why Not! This particular post had the same effect on me as when I read the book. You Don’t Look Sick! Many people have urged me to write a book, but I will leave that to you. With the ups and downs of this insidious disease, I often think about how my children will view their early twenties. My children have not had the ‘early’ Mom back, but for a few fleeting moments, days, weeks.

    I send positive energy to you. Your children are young enough that it is all they know. My impression is that you have created an atmosphere for your family where they will thrive and grow, in spite of your illness.

    Ann

  4. I think that young kids are very good at loving us just as we are, if we can love ourselves. Hopefully that stays with them as they grow!

  5. I really like this treatman plan! How is the teasel working? Are you using it with antibiotics?

  6. I’m not using it with antibiotics. It seems to be working (or something is!) but I didn’t have the severe reaction that some report.

  7. After months of researching treatments and everything Lyme, I came across ur blog. Nice to see posts about your experiences and what’s worked or not for u. I’m curious, why have u decided against abx for now. I was just diagnosed with Lyme about 6 months ago and am treating with naturals, acupuncture and infrared sauna therapy. The next step is the abx but I’ve had serious doubts about it. Mostly because my concern that it will not kill the disease fully. I pulled an engorged tick off me 10 years ago, was really sick the week after and didn’t suspect anything until 2 years ago I got ear ringing, major headaches, facial numbess, trouble walking, panic attacks, chest electric jolts…etc. my immune system finally fought the really bad stuff off but pain, fog and heart stuff lingered. Anyways my thought is lyme sat dormant in cyst and biofilm form. I’m worried the Lyme will just hide and come back later when my immune system is weak again. My symptoms are manageable for now since self treatment: arteminisin, coq10, gse, Ayurveda, mag and calcium, probiotics, garlic pills and peurarin. I’ve been on those for 2 months, and feeling good cognitively but still have constant ear pressure and skipped heartbeats daily. No major headaches tho, but arthritis is worse. I’m going to start taking mimosa and knotweed soon to switch things up and try to eradicate the heart symptoms. A few answers would help, should I take abx now or not, if not when, any ideas for getting pregnant and limiting risk to giving my kids Lyme or autism?

    My stats: 28years old, female, positive igenix igg, super high 41 band, borderline Igm positives. Cd57 : 53. Temperature : 98.1, no hypercogulation, in fact my blood takes longer to coagulate, very low blood pressure : 75-90/55. Low resting heart rate: 45-55. 5’4. 115 lbs. tick bite in northern Cali, currently in la.

  8. I’m no doctor, but I stopped antibiotics as soon as I felt my symptoms were under control enough not to have a significant affect on my lifestyle. Regarding this particular relapse, it passed and I was able to stay off the antibiotics throughout it :).

    If you haven’t taken antibiotics yet, you should work with a lyme literate physician to determine whether you need them now. Most people need them at least for a while, and it’s risky not to use them at all because they do help to knock down the numbers of the Lyme bacteria. There are people who study pregnancy and lyme, and again I would refer you to a lyme literate physician. My understanding is that lyme can be passed congenitally, but low level antibiotics can help to prevent this.

  9. A couple years ago I was treated for cns lyme disease with ‘the strongest antibiotic’. I had a port in my left arm for a month and had to give myself the drugs through that every day. I was junior at high school at this time. A year before that I developed skin problems on my scalp legs and elbows. They have been diagnosed as eczema, psoarisis, and a staph infection which was recent. I am told that I have chronic staph now. Anyway, I live in New York and lyme disease is not uncommon at all for me. I was always active in sports so I never thought much of being tired all the time. I finally got tested then had a lumbar puncture to make sure that I indeed had lyme disease. I have multiple lesions on my brain and I have an mri every 6 months and an appointment with my neuro. I have been told by my ‘top 5’ lyme disease doctor that I can’t have a relapse and that the symptoms are caused by other factors. I am always in and out of the doctor for problems and I’m sure people think I’m either exaggerating or making them up (atleast thats how my family makes me feel). In high school I was an A student graduated with high honor roll and now in college I am not doing as well as I should be. Yes, I can work harder but I can’t remember most things, which is especially bad for a pre-med student. So here ar my symptoms that I have been keeping track of for the pass few months.
    – Forgetfulness (forgetting words, specific things to do, not being able to memorize information)
    – diziness and blurred vision when standing up
    – exhaustion, out of breath walking up stairs. Just now I tried to do an excersise and had pain my throat and ears after 30 seconds of working out
    – random pains in my hands
    – weakness in muscles that lead to tremors
    – legs fall asleep very easily
    – intestinal pains

    I am 20 5’6 130 lbs. I try not to make a big deal out of these things and not relate it to Lyme Disease because no one takes it seriously. Yes I have stress, so does everyone, but not everyone has these symptoms.
    I’ve tried gluten free diets taking a lot of vitamin c and other vitamins. I don’t know what else to do.

  10. Thanks for getting in touch. First, I want to say that I’m really sorry to hear about what you’ve been going through. It sounds like it’s been a really difficult few years. It’s great that you’ve made it this far in college despite all you’re dealing with, but if you can afford treatment, I believe you could be even better.

    It’s great that you got infused drugs for a month, but the most current interpretation of the research, especially in the Lyme community, suggests that this is not sufficient for a bad case of Lyme (and you must have had a bad one for them to even consider a port). For example, you might want to check out this 2012 Study of Lyme in Monkeys which shows that even after aggressive antibiotic treatment, 7 out of 12 monkeys who had late stage lyme (infected for > 3 months without treatment I think) still had active infection: Lyme treatment is pretty controversial, but in my opinion, the evidence is strong at this point that the standard IDSA forms of treatment are not correct.

    So you have a couple of options now.
    1) You can read more. A great place to start if you want the heavy lifting of well-referenced guidelines for treatment is the Lyme community’s own ILADS (International Lyme and Associated Diseases) organization, which has published guidelines for treatment that are quite different from the IDSA’s guidelines (which you were probably treated under). If you prefer “lighter” reading, I can HIGHLY recommend “Cure Unknown” by Pamela Weintraub (science editor of Discover magazine, she and her entire family got Lyme and went through hell. She wrote a book in the style of “And the Band Played On” if you know that one, well researched, fascinating, and a great socio-political history of the Lyme wars)
    2) You can go straight to getting treatment, if you have the financial resources. Most lyme docs do not accept insurance or at least not many types of insurance, and many health insurance companies refuse to treat along the ILADS guidelines. Since you’ve already gotten “sufficient treatment” under the IDSA guidelines, you may have a fight on your hands. So you need to figure out if you or your parents can afford to have you treated, and how much your insurance would pay. If you decide to proceed with treatment, you will also need to identify a doctor you’re willing to use.

  11. Thank you for your post! I am dealing with some of these very same symptoms and am currently so discouraged…. I thought (hoped) I would never have to deal with LD ever again! I had finally gotten back to normal (overcommitted ) and felt great. Then the creeping back of some of the indicators…… painful knees, ankles, elbows and hands….. fatigue…. vertigo upon rising….. shortness of breath…. memory challenges…..
    I don’t know if the stress caused the symptoms or if the anxious stressed out feeling IS a symptom, but now I am “dealing” again!
    One thing I have definitely identified for me is that if I do not drink TONS of water this thing starts creeping back….

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