10.08.2019

My current treatment protocol for #Lyme & #fibromyalgia (2019)

My last post in which I shared my complete treatment protocol was in December 2017, so I am WAYYYYYYYYY overdue for an update. So much has changed since then – both good and bad!

At the time of my last update, I had just started working with my current Lyme/fibromyalgia doctor. I’ve made wonderful progress under his care. He is by far the best doctor I’ve ever seen. Yes, he’s THAT good! I wish I could clone him and send him to every one of you who need a great doctor!

At this point, I would say I’m about 2/3 of the way recovered from Lyme and fibromyalgia. Unfortunately, I’ve had some other health issues (a failed lower back surgery for a herniated disc, a spontaneous cerebrospinal fluid leak and a new diagnosis of intracranial hypertension) since 2017 that’s complicated my recovery, so I don’t feel as well as I would if I was only dealing with the Lyme/fibromyalgia symptoms.

That being said, I’m in a much better place physically today than I was during that December 2017 update.

So, without further ado, here’s the rundown on my latest protocol!

Disclaimer: I am not a medical professional. This post is for general information only and is not a substitute for medical care. Please talk with your medical provider before beginning any new treatments. This post contains affiliate links.

My current treatment protocol for #Lyme & #fibromyalgia (2019) | Fed Up with Fatigue

General supplements

mykind Organics Kids Multi – Last November, I started becoming nauseous whenever I would take my previous multivitamin and several other supplements. I knew I definitely needed a multivitamin in my protocol, but I couldn’t tolerate the high levels of vitamins and minerals contained in most adult multivitamins. I switched to this kids multivitamin, which has lower nutrient levels and is made from whole foods. No more nausea!

My dosage: Two gummies with breakfast and two gummies with dinner.

*****

Vitamin D3 – I added vitamin D back into my protocol over the summer after my latest blood tests showed low vitamin D levels again. I’ve never been able to tell if taking vitamin D really helps me or not, but I did run across this article in August, which said back pain is often associated with low vitamin D levels. I’ve noticed a reduction in lower back pain since adding vitamin D back into my protocol. I can’t say for sure if it’s the vitamin D causing the improvement, but the timing is interesting.

My dosage: 3,000 IU with breakfast.

*****

Magnesium glycinate – I’ve taken some form of magnesium since my fibromyalgia diagnosis in 2014. Magnesium is incredible! It helps me with so many issues: general aches and pain, restless legs, foot/leg cramps, and it keeps my bowel movements regular!!!

My dosage: Two capsules with breakfast.

*****

ConcenTrace – The main ingredient in ConcenTrace is magnesium, so you’re probably wondering why I’m using multiple magnesium products, huh? ConcenTrace has magnesium, but it also contains loads of great trace minerals as well. Our agricultural soils are depleted these days due to over farming and other environmental factors, so ConcenTrace is my attempt to put those trace minerals back into my body on a daily basis.

Also, I find that ConcenTrace staves off that all-over achy feeling better than the Pure Encapsulations capsules mentioned above whereas the capsules work better for maintaining regular bowel movements.

My dosage: One teaspoon diluted in orange juice and taken twice a day on an empty stomach in the morning and before bed.

Pain

Medical cannabis: I’ve recently posted a video about my medical cannabis protocol so I won’t repeat that information here. I use it for both pain and sleep, which I’ll address later.

My dosage: I use various forms of cannabis, including vape cartridges, edibles and capsules, for pain relief.

*****

Tramadol: Tramadol is a synthetic opioid. I don’t take it every day, but I definitely reach for it whenever my pain level goes above a 5 or so on the pain scale.

My dosage: 50 mg as needed.

*****

Low dose naltrexone: If you’ve followed Fed Up with Fatigue for very long, then you know I’m a HUGE fan of low dose naltrexone (LDN). This was the only drug that provided any kind of pain relief in 2014-16 when my symptoms were the absolute worst. I quit taking it for a while because it seemed to stop working, but I’m back on it.

I’m actually not taking it for pain relief now but for immune system support as part of my Lyme treatment. However, I can tell it’s helping with pain, too, so I’m including it in this category.

If you have fibromyalgia and you haven’t heard of LDN, research it! In small trials, it outperforms both Lyrica and Cymbalta in reducing fibromyalgia pain with few side effects. I’m continually amazed by the success stories from fibro warriors who say they’ve gotten their lives back after going on LDN.

My dosage: 3 mg at bedtime.

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Gabapentin – My doctor added this to my regime a couple of months ago to help with anxiety. I can’t say for sure if it’s really doing anything for my anxiety or not. However, it does help with general nerve pain and sciatica caused by a bulged disc in my lower back.

You’ll notice my dosage is super low; some people take up to 2,000 mg a day of gabapentin. I’m super sensitive to medications, so if I take more than 200 mg, then I’m a loopy, groggy mess.

My dosage: 100-200 mg at bedtime or as needed for sciatica.

*****

Quell pain relief device – This is another oldie but goodie! I’ve used my Quell device for years! Fortunately, I don’t have to use it every day now because my pain levels have gone down as I’ve actively treated Lyme and fibromyalgia, but I still reach for it on bad days.

I think it’s important to say Quell is NOT a TENS device! A TENS is generally used for localized pain whereas the Quell provides full-body pain relief. You can learn more about Quell and how it works in my past review.

I’ll be reviewing the new Quell 2.0 device in the coming months, but essentially it works just as well as the original. The only major difference is that 2.0 is smaller.

My dosage: Worn as needed for pain relief.

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ActiPatch – I couldn’t tolerate my back pain without ActiPatch! Seriously, this little device on a round flimsy wire is my No. 1 tool for managing lower back pain, but it works well for other kinds of localized pain, too. I’ve used it a few times for joint pain in my knees and hips. My previous review of ActiPatch explains what it is and how it works so I won’t repeat that here.

What I will share is that a few months ago my ActiPatch died on me unexpectedly, and I had to wait for a replacement to come from Amazon. By day two, I was seriously thinking about calling my doctor to request a steroid pack because my back pain was so horrific. Thankfully, I have Amazon Prime, so I didn’t have to wait super long for a replacement to arrive. I found some relief within a few hours of wearing the new device.

My dosage: I wear my ActiPatch 24/7 except for when I’m in the shower or sauna.

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Resonant Botanicals lotions – I apply Resonant Botanicals pain-relieving lotions every day after my shower and/or before going to bed. I rotate between Neuro-Soothe (best for nerve pain), Painless (general pain) and Painless PM (stronger pain) depending on my symptoms. All three formulas contain hemp CBD oil, magnesium and other natural pain fighters. You can read my previous reviews here and here.

My dosage: Applied daily.

Gut health

Anti-inflammatory elimination diet – Without a doubt, my first major step toward recovery from fibromyalgia and Lyme was going on an elimination diet. I started in 2015 by cutting gluten, soy, fast food, soda, processed sugar and most processed foods. Then in 2018, I finally cut dairy. Oh boy, that was tough!

I fell off of my elimination diet as I was recovering from the cerebrospinal fluid leak earlier this year, and I’ve been struggling for weeks now to give up dairy again. I can definitely tell a difference when I eat on plan and when I don’t. When I indulge, I have more pain, more tummy problems, more brain fog, etc.

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Daily Body Restore – This product combines probiotics and digestive enzymes into one convenient capsule. I’ve been taking Daily Body Restore with meals for at least a couple of years now, and this, in tandem with an elimination diet, has made a huge difference in reducing my gut symptoms. You can learn more about Daily Body Restore in my previous review. It’s good stuff!

My dosage: One capsule with each meal.

Lyme killers

Otoba bark and cat’s claw – If you have Lyme, you’ve probably heard of the Cowden protocol, a natural Lyme treatment protocol created by Dr. Lee Cowden. Banderol and samento are the two primary herbs of the Cowden protocol and are available in tincture form from NutraMedix. Unfortunately, NutraMedix jacked up their prices a couple of years ago, making it difficult for many of us to afford their products.

During a webinar by Lyme specialist Dr. Marty Ross, I learned otoba bark and cat’s claw are the same herbs used in NutraMedix’s banderol/samento but sold at a much lower cost.

Otoba bark and cat’s claw have been game changers for me! They replaced prescription antibiotics, and every one of my Lyme/fibro symptoms are better as a result of using these tinctures for the past two years.

Note: I used to order both otoba bark and cat’s claw from Wildcraft Herbs in Canada. However, they’ve recently had a supply issue with otoba bark, so I’m temporarily ordering that from MyHerbs.net.

My dosage: One dropper of each tincture diluted in orange juice and taken on an empty stomach in the morning and at bedtime.

Sleep

Melatonin – I’ve used melatonin off and on for years to help me to fall asleep.

My dosage: 3 mg at bedtime.

*****

Medical cannabis – In addition to pain relief, I also use medical marijuana to improve sleep. I’ve recently posted a video about my medical cannabis protocol so I won’t go into detail here. Suffice it to say I don’t think I could sleep without it at this point.

My dosage: I use cannabis in various forms, including vaping, edibles and capsules, at bedtime to help with sleep.

Mood

SAM-e and 5-HTP – I have a lifelong history of depression and have taken prescription antidepressants off and on since my late teens. Before I got sick, I had started to explore more natural options for depression using an amino acid called tyrosine. In 2015-16, my then fibro doctor Dr. Rodger Murphree recommended switching over to a combo of SAM-e and 5-HTP, and it’s worked so well that I’m still taking it! I haven’t had a single episode of clinical depression since starting SAM-e and 5-HTP.

My dosage: 800 mg of SAM-e in the morning on an empty stomach and 200 mg of 5-HTP with dinner.

*****

L-Theanine – My current Lyme/fibromyalgia doctor recommended l-theanine as a natural treatment for anxiety. I’m not sure if it’s still working or not. This is one of those supplements where I will stop taking it at some point and see if I can tell a difference in how I feel.

My dosage: 200 mg in the morning on an empty stomach.

Other prescriptions

Hyophen – Overactive bladder was one of my first Lyme-related symptoms, and I continue to have urinary issues because the Lyme bacteria loves to burrow into my bladder wall. Hyophen helps relieve some of the bladder urgency and pain.

My dosage: One pill with breakfast and one with dinner.

NP Thyroid – I take this for hypothyroidism. When I first started thyroid medication in 2016, it cut my brain fog at the time by probably 75 percent. It was a HUGE improvement!

My dosage: 30 mg taken on empty stomach in the morning.

Other supplements

Researched Nutritionals Transfer Factor Multi-Immune – When I was first diagnosed with Lyme, my labwork showed my immune system was suppressed. I’ve taken this supplement for about two years to improve the functioning of my immune system. To be honest, I have no idea if it’s doing anything or not, but my doctor wants me to continue to take it, so I do! My immune system markers are better now than they were upon my Lyme diagnosis, so maybe it’s doing something?

My dosage: One capsule in the morning on an empty stomach.

*****

Curcumin Phytosome Meriva – My doctor and I suspect I have mold colonizing inside of my body. I’ve sort of plateaued in my recovery in recent months so he suggested adding this form of curcumin as a mold killer. He stipulated that I needed the “meriva” variety because it’s more effective than other curcumin products. I’ve only been taking this for a few weeks, and I haven’t noticed any big changes at this point.

My dosage: One capsule with breakfast and one capsule with dinner. My doctor wants me to add a third capsule each day, but it causes nausea whenever I try, so I still need to figure out how to get that third capsule into the mix!

*****

Quercetin – I have a bad histamine problem, which essentially means I constantly keep a runny nose and watery eyes. Quercetin suppresses the body’s histamine response and is a natural alternative to Allegra, Claritin and similar medications. Without a doubt, this stuff works! If I skip more than a couple of doses, my nose runs like a scared greyhound at the racetrack.

My dosage: One capsule with breakfast and one capsule with dinner.

Mind & spirit

Yoga and meditation – I resumed a regular meditation practice about six weeks ago and added in some gentle yoga about a month ago. It makes a big difference in my overall mindset.

The yoga program I’m following was designed specifically for people with chronic illnesses like fibromyalgia, Lyme and chronic fatigue so it’s super gentle.

*****

Earthing/grounding – Weather permitting, I try to spend a few minutes each day outside with my bare feet on the ground. This link will explain why that’s helpful!

Detox

Detox is a HUGE topic of conversation within the Lyme community, but it’s hardly mentioned in fibromyalgia circles. I actually saved this section for last because of everything I’ve included in this blog post, detox has made the biggest difference in how I feel day to day.

Over the past couple of years, I’ve had multiple integrative doctors tell me people with illnesses like fibromyalgia, Lyme and chronic fatigue nearly always have genetic issues that have affected their body’s ability to eliminate toxins.

Why does that matter? Because our bodies are assaulted every single day, all day long, with toxins from the chemicals in our laundry detergent (yes, those get absorbed through our skin!) and cleaning products to the glyphosate (i.e. Roundup weedkiller) that’s sprayed on our food to the pollutants in our air.

If our bodies can’t flush these substances out efficiently, then they continue to circulate within the body or are stored in the body’s tissues, where they can trigger inflammation, which in turn causes increased pain, fatigue, brain fog and more!

At some point, I will write a blog post devoted exclusively to detox because I think it is ONE of the missing links for so many of you. I know it was for me!

*****

Infrared sauna – This one was definitely a big investment, but I’ve never regretted the purchase of my infrared sauna. It’s one of my two main detox strategies, but it also helps to relieve pain especially in the winter when my whole body aches from the cold. I’ve written more about the benefits of infrared sauna in this article.

My dosage: Most evenings, I spend one hour in the sauna at 125-130 degrees.

*****

Coffee enemas – This is my second greatest detox tool. Yeah, I know it sounds scary and weird and just … ewww…. I get it! I really do!

But I’ve found coffee enemas so beneficial for getting the yucky stuff out of my body. You can read my full blog post about coffee enemas and their many benefits here.

My dosage: I do a coffee enema about every other day.

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Binders – I use binders including bentonite clay, cholestyramine (prescription) and activated charcoal in tandem with the sauna and coffee enemas. I also reach for a binder anytime I feel sort of nauseous and super brain foggy, and it almost always helps me to feel better within a few minutes.

In simple terms, a binder latches onto the bad stuff in your body and then deposits it into your intestines where it can be eliminated. This keeps toxins from being reabsorbed by the gut and recirculated and/or stored throughout the body where they can trigger inflammation.

You can read more about binders, what they are and how they work here.

*****

Biosil – I’m using Biosil to detox aluminum after heavy metals testing showed I have high levels in my body. I’ve read almost everyone these days tests positive for high levels because we’re exposed to aluminum in multiple ways through our antiperspirants, food cans, cookware, geoengineering and other sources.

My dosage: Five drops diluted in orange juice and taken on an empty stomach in the morning and at bedtime.

*****

Burbur pinella tincture – This is another tincture that’s part of the Cowden protocol mentioned above. I use this to facilitate brain detox. Yeah, I know that sounds weird but there have been a number of studies recently that show people with fibromyalgia tend to have brain inflammation. I suspect researchers would find the same in Lyme patients if they looked. There has also been the recent discovery of the glymphatic system in the brain.

My dosage: One dropper diluted in orange juice and taken on an empty stomach in the morning and at bedtime.

*****

Stopping the inflow – Over the past few years, I’ve put quite a bit of effort into limiting my exposure to chemicals and other toxins. The fewer toxins that my body has to process and eliminate, the better!

Some of the changes include:

  • Replacing most of my personal care and cleaning products with more natural options.
  • Installing filters on my water supply including in my shower.
  • Adding air purifiers for better air quality.
  • Changing my cookware to a nontoxic nonstick brand.
  • Avoiding the use of aluminum foil and plastic containers for cooking and food storage. Instead, I use parchment paper and glass containers.
  • Buying organic food whenever possible.

What I’m adding to my protocol soon…

Mitochondria IGNITE – I’ve made good progress on reducing many of my symptoms, but fatigue is still a big issue from me. I’m super tired, all the time, every day.

Dr. Marty Ross, one of the physicians I follow online, frequently recommends NT Factor to help rebuild mitochondria and improve fatigue in his Lyme patients. This week, I’m adding Prohealth.com’s version of NT Factor called Mitochondria IGNITE to my protocol. I’ll be trying it for a couple of months and then reporting back to you guys on if it worked or not. Fingers crossed!

*****

Gupta Program – There’s some evidence that the nervous systems of those of us with fibromyalgia and similar conditions are stuck in fight or flight, or sympathetic, mode. My brain and body definitely feel like that’s the case! I always feel keyed up, like I can’t relax.

Why does that matter? Because that keyed up feeling means our sympathetic nervous system is in control. In contrast, healing can only take place when we access our parasympathic (i.e. rest/digest) nervous system.

The Gupta Program uses the principles of neuroplasticity to help calm the nervous system and brain, so our bodies can spend more time in the parasympathic state. I’ve already tried the program twice, and I know it works as long as I do the daily exercises. The problem is that the program is pretty time intensive, so I keep falling off the wagon because it’s hard to get everything done with limited time and energy.

So, my plan is to continue to practice yoga and meditation, cementing those habits into place over the next month or two. Then, I’m going to add the Gupta Program exercises back in.

You can read more about the Gupta Program in my previous review. I’ll be writing a review on the new online version of the Gupta Program soon.

*****

Gaba/glycine – Before I received my medical marijuana license, I used a combination of gaba and glycine supplements to help improve deep sleep as recommended by Dr. Ginevra Liptan in her book, “The Fibro Manual.” Once I started using cannabis, I stopped gaba/glycine to save money because the cannabis seemed to work great for improving my sleep.

However, the past few months, I’ve started to have sleep issues again. Nothing has changed on my sleep protocol or my sleep pattern, but I’m waking up feeling more tired than I used to. So, I’m going back on the gaba/glycine to see if that will make a difference.

You can read more about using gaba/glycine for sleep in this blog post.

So, now it’s your turn: I would love to read about the treatments and practices that are helping you the most with your fibromyalgia and/or Lyme symptoms. Please share in the comments below so we can all learn from one another!

Comments

  1. Louise Sunde says

    I’m so glad a ran across your site because I truly believe knowledge is key. In the summer I started Biomagnetic therapy for my chronic lyme. The woman who does it was cured of her debilitating lymes by this therapy so she decided to become a therapist herself. It sounds simple in theory-putting a bunch of magnets on you, but it is actually quite complex. If the body is in balance, it will be able to heal itself. It is a gradual process, but I will say that my good days are lasting longer than before so when I am in a good place I feel hopeful that this will work. Thank you for this site!

  2. There actually IS a study indicating that people with Lyme have aberrant brain activity. Maybe not inflammation per se, but abnormality. I believe it came out this year. It’s in the “studies” section of my post, under “aberrant activity of microglia in the brains of PTLDS patients” https://imdoingwitchcraftoverhere921091042.wordpress.com/2018/07/28/the-hydra-protocol/

  3. So helpful. You continue to be my guru. Thank you for your thorough reviews and information. 💗

  4. Sharon says

    Hi, I really appreciate you sharing your treatment plan with all of us as well as all the other helpful information you share. My question is, I have fibromyalgia but not Lyme disease so is there anything in your regimen as outlined that you feel would not be necessary if one does not have Lyme disease? Thank you!

    • Donna Gregory/FedUpwithFatigue.com says

      If you don’t have Lyme, then you wouldn’t need the otoba bark/cat’s claw tinctures listed under the “Lyme killers” section or the Researched Nutritionals immune supplement under the “other supplements” section. Those are the only things on the list that I feel are really specific to my Lyme treatment. The rest of it *could* be applicable to fibromyalgia depending on your list of symptoms. Obviously, you wouldn’t need certain treatments like the hyophen for overactive bladder or the thyroid medication if you didn’t have those specific issues.

      • Sharon says

        Thank you!

      • Kathy Kilmartin says

        Never came across your blog before but this is most helpful. Amazed to see the $$$ spent on supplements and devices that never worked or I could not handle. I am finished with my Lyme treatments as I felt somewhat better except For the ic which I take hyophEn as need but must follow a good diet. My chronic fatigue is really the worst along with the fibro but unfortunately I cannot handle any THC. ….so sensitive to everything…glad you can handle it as I see many of your previous tx you were also sensitive too or did not work

        I was treated for Lyme about10 years ago and now I basically just see my amazing acupuncturist. When I started with him I had goopy globs pouring out of my eyes. I swear I was detoxing all those supplements and antibiotics I had taken. He also believes in opening the neck at every visit with tui massage. Big difference to open the brain/ gut pathways and energy to the brain. He does not believe in supplements as the block the energy in the body but I do take a few. I won’t go into all his reasoning of no supplements and herbs but I do think I wasted money on many an many made me sick so I am glad to see you had some of the same issues.
        My CFS is flared right now but I am now 70 so I know I pushed myself the last week. I also had a bad fall on my face in the eye area where I I have facial neuralgia so the only thing that helps that is acupuncture.
        Going on too long but thank for the time to review all your treatments. I had forgotten all I had been through.

  5. Janzel says

    Thank you so much fo sharing what you use and what has worked for you. This is so healpful as the road to health is so confusing and you do feel alone in this journey.
    I am using most of the items you are using…I could not use the curcumin as it effects my I.C. and my doctor seems to be following the Cowden prodical. I have gotten better very, very slowly but still suffer from fatigue. I would like to try the mitochondria ignite and I am anxious to see how you do.
    How do you organize all your medicines? I am overwhelmed with taking all these meds at the right time.
    Thank you so much for all you are doing to help others while you are still suffering yourself. You have been a great help to me 🥰

    • Donna Gregory/FedUpwithFatigue.com says

      Hi Janzel, re: medication organization, I just use pill organizers like most people. Actually, they’re not technically pill organizers, but little plastic containers that I bought at the Dollar Tree b/c most pill organizers on the market don’t hold very much. The Dollar Tree organizers are larger so they hold more. Sad reality of chronic illness, right? 🙁

      I have one kind of container for meds/supplements I have to take first thing on an empty stomach, one for meds/supplements taken w/ breakfast/dinner and a third one for what I need to take at bedtime. I generally fill these up once a week or so. Several of my treatments are liquid so I just store those in a basket on my kitchen counter for easy access.

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