This article was originally published on FedUpwithFatigue.com and is being republished here with permission from the author.
I very rarely give an update on my health status, but I’ve had several people over the past weeks ask for the details of my current treatment protocol for chronic Lyme and fibromyalgia. Since it’s easier to write it out once instead of multiple times, I’ve decided to share it in a post for those who are interested.
If you’re not interested, I completely understand! I know protocols are individualized, and what I’m doing may or may not be relevant to your own health journey.
A quick review: I was diagnosed with fibromyalgia in early 2014. I found out last year that I have chronic Lyme disease and several co-infections. I was told by my doctor that these multiple infections are likely the underlying cause for my fibromyalgia symptoms. She speculated that if we were able to put the Lyme and other infections into remission that my fibromyalgia symptoms should disappear or at least greatly diminish.
For more than a year, I was actively treating Lyme and the other infections with oral antibiotics. The antibiotics did help reduce some symptoms, but overall I didn’t see much improvement while using them.
Last summer, I was beginning to have a lot gut issues and other side effects from the long-term use of antibiotics, so I made the decision to stop antibiotic therapy and find a doctor who treats Lyme/fibro more naturally than my previous two Lyme specialists. I’ve been on my current protocol for about three months now.
I really, really like my new physician, Dr. Mark Sivieri, in Maryland. Instead of just killing bacteria, Dr. Sivieri has shifted the focus of my treatment to detoxing and strengthening my immune system. My protocol includes a combination of prescription drugs, supplements and other therapies.
I will warn you: There are A LOT of pieces and parts to my protocol. Please don’t judge me! We all have our own path, and this is mine right now.
Also, this protocol is super expensive. Trust me, I know that! Almost all of my part-time salary these days is going to pay for treatment. I’m grateful that my hubby has a good job so I can put most of my earnings toward getting better.
So with those caveats out of the way, here’s the rundown on my current protocol.
(This article contains affiliate links.)
New supplements & herbs…
- Vital Plan is the core of my herbal protocol. The four-bottle Restore Kit supports the immune system, protects the microbiome and helps suppress pathogens. Many of the herbs contained in the Restore Kit are from the Buhner protocol, which has been used for years to successfully treat Lyme. (I reviewed Vital Plan last year when I was gifted a three-month supply.)
- NutraMedix Banderol Microbial Defense – About two months into my new protocol, some of my symptoms – urinary urgency, shin pain, burning feet, etc. – were returning because I was no longer taking antibiotics. Dr. Sivieri recommended adding banderol, one of the main herbs in the Cowden protocol for Lyme, to further suppress the microbes. I wasn’t sure if it was really helping until I recently ran out of it. Within three or four days, my pain level and urinary urgency were both flaring. I’m definitely not going to let myself run out of banderol again!
- Research Nutritionals Transfer Factor Multi-Immune – This supplement is supposed to improve the functionality of my immune system.
- Plaquenil – This medication is usually prescribed for lupus and rheumatoid arthritis, but also treats certain parasites and the cyst form of Lyme. My second Lyme doctor actually put me on this, but Dr. Sivieri left me on it. I don’t think Plaquenil is doing anything to help me, so I will be talking to Dr. Sivieri about weaning off of it soon.
- Limbrel – This is a prescription medical food that’s usually prescribed for osteoarthritis. Dr. Sivieri prescribed it to reduce inflammation in my body. Like Plaquenil, I’m not sure if this is working or not. After the first of the year, I will likely wean off and see if there is a change in symptoms.
- – This is a synthetic opioid that I take as needed for pain. Sometimes it helps; sometimes it doesn’t.
- Hyophen – This drug was prescribed by my urologist for urinary urgency. The banderol seems to help the most with urinary urgency but I think this helps a little bit, too.
- Armour Thyroid – Dr. Sivieri switched my thyroid treatment from liothyronine to Armour Thyroid because he says it works better than the synthetic medications. I think he’s right. I’ve finally stopped losing my hair!
I use medical cannabis every night as a sleep aid. Lately, I’ve been dosing with Rick Simpson Oil at bedtime. If my pain is flaring up, I will also vape an indica strain called MK Ultra for immediate relief.
I have stopped taking the GABA/glycine combo that I wrote about previously. Once I added cannabis to my bedtime routine, I found I no longer needed to take the GABA/glycine, too, but I am still a big fan of that combo for improving sleep.
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- Cholestyramine – This is normally given to people to reduce their cholesterol, but it’s also used as a prescription binder for toxic mold exposure. Cholestyramine is a yellow powder that I mix with orange juice and drink twice a day. It’s supposed to bind onto toxins in my intestines and help flush them out of my body. I’ve noticed that if I feel nauseous, drinking cholestyramine will generally take care of that without having to take medication specifically for nausea. It’s a very good thing!
- Coffee enemas – I’ll be sharing a full post on this one soon, but without a doubt I think coffee enemas are the most effective therapy in this new protocol. They give me an energy boost, alleviate brain fog and help some with pain.
- Infrared sauna – I invested in a home infrared sauna about a year ago, and I still use it almost every night to sweat out toxins. It also provides pain relief, especially in the winter when even my bones feel cold.
- Last fall, I stopped drinking bottled water (except when traveling) and started having water delivered to my home. The water is sourced from a spring in West Virginia and contains magnesium and other health-promoting minerals.
- I installed a filter on our shower to keep my skin from absorbing harmful contaminants. If you’re on a municipal water supply, your skin is likely soaking up fluoride, chlorine and other chemicals.
- For Christmas, I just bought another air purifier to help clean the air in our home.
Stuff that hasn’t changed…
- I still eat a limited, mostly whole foods diet. I’ve cut out gluten, soy, fast food, processed sugar and most food preservatives/chemicals. Basically if I read a food label, and I don’t recognize an ingredient, I don’t buy it. I buy as much organic as I can afford. I still need to cut out dairy because I’ve tested positive for a casein allergy. I suspect high-oxalate foods may be an issue for me, too.
- I drink kombucha every day to help with gut health.
- I still use the Quell pain relief device.
- I still take a handful of routine supplements in addition to those listed above: fish oil, magnesium, Daily Body Restore (probiotics/digestive enzymes), and SAM-e and 5-HTP for mood support.
- I’m still slowly replacing my body care and cleaning products with more natural options. It’s been a long process because unfortunately it can be hard to find natural products that work just as well as mainstream ones.
How I am now…
My gut issues mostly ended when I stopped taking antibiotics. The daily nausea and dizziness I’d had for months is mostly gone now, too.
My Lyme/fibro pain is better than it was before working with Dr. Sivieri. I still have pain every single day, but I had a reprieve during October and November when my Lyme/fibro pain level was in the 1-4 range on the pain scale with some higher days sprinkled in here and there. Normally, my levels fluctuate in the 4-7 range.
Unfortunately, as the cold weather moves into Delaware, my pain level is going back up again. I really wish I could spend winter in a warmer environment. I think that would help a lot!
Last July, I was diagnosed with a herniated disc in my lower back. I’m still experiencing moderate pain from that despite two steroid injections and physical therapy. On a lot of days, the back pain is worse than the Lyme/fibro pain.
My sleep is better thanks to cannabis.
I still struggle with daily fatigue. Coffee enemas really help, but the effects only last for a few hours.
Some symptoms have returned and/or increased since quitting antibiotics: head pressure, heart palpitations, motion sickness when traveling and sensitivity to synthetic fragrances (laundry detergent, shampoo, gasoline, certain cleaners, etc.).
Because banderol works so well, I’m adding a couple more tinctures from the Cowden protocol. I’ve ordered samento, an antimicrobial, and burbur/pinella to reduce daily episodes of head pressure.
I’ve been toying with the idea of trying the Wahls Protocol diet because I really need to eat more vegetables.
There are a couple of holes in my protocol. I really need to add meditation or some other form of daily relaxation practice to help calm my overreactive nervous system. It often feels like my body is in fight or flight mode.
I also need to introduce gentle exercise back into my life. I’m trying to work up the motivation to start the Autoimmune Strong fitness program, which was developed specifically for people with fibromyalgia and similar conditions.
I plan to see Dr. Sivieri next month so we can review my protocol and make any necessary tweaks. At this point, the things that have made the biggest difference in my symptoms are coffee enemas, cholestyramine, banderol, cannabis and infrared sauna.
Using antibiotics to treat Lyme never really made sense to me because they actually suppress the immune system. I feel like Dr. Sivieri’s protocol balances supporting and cleansing the body while also keeping the pressure on the pathogens. So far it seems to be helping. Obviously, I wish it was working more quickly. I had hoped to be in remission from Lyme by the end of 2017, but I won’t meet that goal. Still, forward progress is forward progress.
So now it’s your turn: Have you recently added anything to your treatment protocol that’s really making a difference? Share in the comments!
Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.