12.12.2017

My current treatment protocol for chronic Lyme and fibromyalgia

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.

My current treatment protocol for chronic Lyme & fibromyalgia | Fed Up with Fatigue

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 Amazon 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.

Prescriptions…

  • 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.
  • Tramadol – 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!

Medical cannabis…

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.

Detoxing…

  • 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.).

What’s next?

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! 

Comments

  1. Hello Donna. I have Bartonella and copper issues. Panic and fear. Do you still see Dr siveria? I want to knoq if he qorks qith some one financially if they need help!!. I’m so frustrated about not having money for treatment. Thanks Kevin

    • Donna Gregory/FedUpwithFatigue.com says:

      Yes, I’m still working w/ Dr. Sivieri. I don’t know if he works w/ people financially or not. I would call his office in Columbia and ask. I wish you well.

  2. CarolAnn Adams says:

    Hi !,
    This is a good free app. for mindfulness breathing. I love it ! It only takes about 3 minutes to do and it is cool that you can calibrate your breath each time.
    It can be a real helpful relaxation technique. I also do some audio guided relaxation. but I use the Calm app most every day. I hope this helps.

    https://play.google.com/store/apps/details?id=com.inspirednotion.mindfulnesscounting

  3. Tina Hensley says:

    I was recently diagnosed with Lyme. I was diagnosed with fibro in 2009. I have found LDN to be a wonderful asset to my program. I urge everyone to get checked for MTHFR gene mutations. It keeps us from processing B vitamins (nervous system) and impairs our ability to detox. If you have the mutation the fix is a simple Methylated B vitamin. I was diagnosed with ALS in March of this year and NEVER believed the diagnosis. Looks like I am correct chronic lyme mimics ALS. I am doing both antibiotics and Traditional Chinese Medicine (TCM). I have worked on building my immune system and healing leaky gut so am hoping I can handle the antibiotics without trashing everything. I am very disappointed that Lyme has been such a controversial issue. It is ridiculous that any human has to fight to get treatment. I pray for all of the fibro/lyme people to find relief. Changing my diet has been crucial, I avoid gluten, dairy and sugar. It was a difficult change at first but now it is second nature. If I stray off of my approved list I can feel it immediately. Never give up each of us deserves to be healthy and pain free. Blessings….Tina

  4. Deb Dorgan says:

    Like you, I have tried sooooo many things. Acupuncture, PT, chiropractic, injections, Lyrica, Sam-E, several years on opioids, etc. etc. every kind of sleep med, and medical hypnosis. Strangely, the medical hypnosis was for insomnia, which I really doubted would help it, but it has. I still have to use a sleeping pill on occasion (maybe 1 or 2 times a week) but much less in dosage and frequency than my “needed it every night” routine before hypnosis. Cannabis has also been a big help. Living in a legal state I have learned to make tincture and salve on my own, which helps a lot and allows me to control dosage and quality. I have grown 3 high CBD varieties and they have all been a great help for daytime/can’t be impaired type of pain. I am lucky to have a physiatrist (physical medicine specialist) for pain management, and he is letting me try LDN. I started it two months ago, and within a few days my energy level was MUCH improved, along with my mental outlook. So far I have been working my way up, currently
    using 2 mg. morning dosing. The vivid dreams were annoying (especially with a sleep problem!) but morning dosing helps. No real pain relief from the LDN yet, but from what I read that could take several more months. I also have a significant immune system issue probably related to CFS, and the LDN may help with that as well. We have to advocate for ourselves! The pain doc was willing to let me try LDN when the rheumatologist was not. I am planning to try Quell after reading your articles about it. Thanks for your blog and information.

  5. Thanks Donna and other fellow fibro/Lymes/spinal issues etc etc etc sufferers. Sheesh.. The list keeps growing doesn’t it!?
    Anyway, not much has helped for pain which is usually at between a 6 & 8 because of several spinal issues, arthritis in most of my body and all the rest, so unfortunately I’m forced to still use opiates. It’s very difficult to admit and talk openly about, but because I’ve taken them for so long, when I dont for any length of time I not only can’t handle the pain, I become extremely depressed and I have no functioning ability at all. Apparently my brain is no longer able to produce its own dopamine and other things that are too hard to explain, so I’m kinda stuck.
    After fighting this battle for over 20 years I’m pretty weary with it all and often feel very hopeless and alone. I don’t feel like I’ll ever totally give up, and I keep on keeping on but at times it gets to be too much,as you all know.
    That was a bit off topic but I guess I needed to say it. I’ve isolated over the years (Not good,, Don’t do it!!) so I rarely have peeps to talk to that get it.
    Anyway, what “Has” helped for muscle and nerve pain is Magnesium Malate, which I now know I have to go off of for a little while every few months as it seems to stop working, but when it is working it’s a definite improvement. For sleep I’ve found that alternating between Calms Forte Sleep formula and an herbal remedy of Gaba, passion flower, lemon balm and L-theanine helps, and for energy – D-Ribose, a Ginseng complex, L-tyrosine and Dr. Bachs energy formula is good. The only problem with any of it for me is that it only works for a while and then I need to go off for a bit. The biggest help with energy and focus has been the D-Ribose along with the L-tyrosine and L-theanine which is great for calm focus, and the D-Ribose has been a life saver when I have physical work to do.
    With my screwed up nervous system, I also feel like I’m in fight or flight mode most of the time, or like I’m plugged into an electrical outlet. Magnesium helps with this along with the L-theanine. Dam! I think I take my body weight in supplements! Lol
    Along with Allll the symptoms we deal with on a daily/hourly basis, one of my biggest struggles has been the anger about the lack of education, care, progress, treatment, money backed scientific studies and research. Also the “too many to count” times a doctor says to yet another one of us…
    Maybe you need to get out more, or perhaps you’d be better served by seeing a psychologist, or my favorite.. Let’s try THIS antidepressant. If I had one dollar for every time I was told these things and more, I’d be able to pack up and move to a warmer climate and afford a really good treatment program.
    Well thank you all for letting me go on and on. It’s been a long time since I have.
    Here’s to going through it all together! 💞

    • Carolyn Turbett says:

      Bobbi, How much d-ribose do you take? I’ve been on it for a month but only take one scoop (five mg?) I probly need more right? thx, Carolyn

      • Donna Gregory/FedUpwithFatigue.com says:

        Hi Carolyn,
        In clinical trials, they used 5 grams of d-ribose x 3 times a day for 2 weeks, then they cut back to 5 grams x twice a day as a maintenance dose.

  6. Currently I’m on Tramadol, Ibuprophen, Levoceterizine, and Plaquenil ( the generic form). I think they are helping somewhat with the pain and inflammation, and the Levoceterizine helps with the possible Mast Cell problem I may have if I take it twice a day. The Dysautonomia is still yet unaddressed, but I am hoping to make some headway with that in January. Have been having quite a lot of sudden stomach upset and urinary incontinence that hits with no warning, and hot and cold spells that come on unexpectedly, as well as some episodes of feeling faint and weak.

    I think it’s always helpful to hear what others medical situation is. Out of that comes ideas that may not have occurred to us otherwise. Definitely makes for good reading to evaluate whether or not any of these options might help, what the side effects are, how real live patients react to them, etc…

    Of the number of things you’re taking I have heard of some of them but not the others. Is your doctor a DO? I think I have heard his name before somewhere. Most of the doctors around here aren’t that open-minded. I spoke with my liver specialist about D-Mannose for prevention of urinary tract infections and he immediately was afraid it would cause kidney damage because a study said vaguely that it “could” in high enough doses (whatever “high enough” means). When I asked him how much he thought too high a dose was he got flustered and just said he was not an herbalist and that I should ask an herbalist. Insurance won’t cover that unless he/she is also an MD, and I really don’t have the money to see one out of pocket. I have no second income to help cover the cost. It would be nice if more MDs were trained in both traditional and natural medicine as a standard part of medical school training. That would give us alot more options and some help expolring them. Insurance really should cover that too. Hopefully in the future…

    • Donna Gregory/FedUpwithFatigue.com says:

      My doctor is an MD but he practices integrative medicine. D-mannose is routinely used by people w/ Lyme to help urinary issues. I didn’t personally find it helpful for my urinary issues but many do.

  7. Holly says:

    I started the Autoimmune Strong fitness program six weeks ago and it is the first and only fitness program I have tried that doesn’t cause me a pain flare!

    I also love coffee enemas and smoke pot to help me sleep. It took me a long time to accept this is a treatment option, but it works for me with very few side effects.

    • Donna Gregory/FedUpwithFatigue.com says:

      That is such good news about Autoimmune Strong. I’ve been putting it off b/c of dealing w/ this back pain situation and just not wanting to maybe trigger bad symptoms. Your comment makes me feel better about it. Yes, coffee enemas and cannabis are both great! Definitely work better than some of the conventional treatments I’ve tried.

  8. Hi Donna, Thank you so much for all that you write! I find all the info incredible even if I personally don’t use some of it as my health journey is a bit different.. I started off with endometrosis/adhesions & had a hysterectomy by the time I was 28- that was the medical “cure” back then after several surgeries & treatments then a few more surgeries.But at 50 I still have endo/adhesions & all the lovely scar tissue from failed treatments…. I also developed IC then fibro, which is why I’m commenting. I’ve found the best info from here for pain & fibro especially with the quell unit which several months after I had read your experience & info but thought I have several tens units that I do still use how different can it be plus the money! But then my boyfriend happen to see it on qvc & encouraged me to try it & wow I was surprised how it helped almost all of my pain issues when I’m wearing it! It even helped my swelling, urinary frequency, mood ect… Within a day he even noticed the difference so Thank you! The only thing it doesn’t help but one of my tens units does is with an impinged nerve but i need to go back to pt. I just wanted to thank you for telling your story & what you’ve tried & your opinion because it really helps me!! Thank you Thank you !Thank you! Kim

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Kim, I’m so glad you’re getting some relief from Quell. I just love, love, love that product, and am so thankful it is available to us.

  9. Susan Haffey says:

    I got The Fibro Manual and the Topricin creme.. the creme is helping. Yesterday I rinsed off my car and wiped down the Windows and the body. I take Tramadol and Cymbalts. I take lots of vitamins etc since I had gastric bypass surgery. Recently I started taking Hylauronic acid/msm/0Glucosamine. My joints are now lubricated and I am starting to heal myself. Thanks to you and your suggestions.

    • Donna Gregory/FedUpwithFatigue.com says:

      I’m glad the Fibro Cream is helping you! Is there one product that combines the acid/msm/gluco or are you taking those separately? I can see how all of those would help.

  10. Manon says:

    Thank you for sharing! THIS WAS A GOOD MOTIVATIONAL BOOST TO KEEP TRYING THINGS.
    I have a very similar story and had to wean off abx last year. I use essential oils for both antibacterial (Lyme co-infections, intestinal strep (aka SIBO), and antiviral (for EBV, CMV). I take a turmeric blend called Nature’s Relief by Adeeva for pain (this has helped reduce my pain by at least 50% for 4-8 hours). I am working on my digestion/gastroparesis with a therapist. I too am considering medical cannabis as I have met many who are now fully functional using it.

    • Donna Gregory/FedUpwithFatigue.com says:

      Thank you for sharing! I’m going to check out the Nature’s Relief. I’ve tried different curcumin/turmeric supplements but haven’t found one that works consistently. The best I’ve found is Curamed from Dr. Teitelbaum. Maybe combining turmeric w/ other ingredients like in Nature’s Relief would help.

  11. Rochelle says:

    I’ve been prescribed a number of supplements by a naturopathic doctor, and though it’s difficult to know for sure what is helping, I feel like there has been a significant improvement since starting to take l-carnitine.

  12. SharLynn says:

    Thank you for all the ideas! I’m a Fibro sufferer as well as an injury to my lumbar spine. And yes, my lower back hurts just as much, if not more.
    I want to let people know about Low Dose Naltrexone (LDN) that I started 2 weeks ago. I started at .5mg, which is advised for Fibro, and have worked up to 1mg, continually increasing until I reach the dose for me. Its been described as “rebooting your nervous system” and I definitely have felt changes in my body. I had 3 rough nights when I started on 1mg, and switched to taking in the mornings. And doctors have said you can Tramadol, as I have, you just have to watch how soon or after the LDN you take it. I am currently cut back to 50mg Tramadol4x day, from the previous 6 a day before the LDN. I went to see my Dr today, and as a result of my researching and telling her about it, she has another Fibro client she has started on LDN and is having the same similar experience. And I’ve lost 9 lbs in 2weeks😁 The LDN has cut my appetite way back. I no longer have to take 100mg Tramadol, 1300mg Tylenol upon waking and lie there an hour before I even try to get up. I am planning on LDN literally turning all my my medical issues around. After 9 years of Fibro, 2 years of back injury, I had to give it a try and am happy, so far. I would also like to add the RSO at bedtime, which I will work on next. Thanks for all the research and news, as I’ve learned a great deal!

    • Donna Gregory/FedUpwithFatigue.com says:

      I’m so glad you’re getting good results w/ LDN. I’m a big fan of LDN. So many people are helped by it.

  13. Suzanne Stubbs says:

    Hello Donna, Wow that is quite the protocol to follow–good for you! I like the fact that the medical marijuana you vaporize is named “MK Ultra”. With things becoming legal soon here in Alberta, Canada it will be interesting to see if that brand will be available in my area once the dispensaries take off. Thanks again for all the effort you put into your blogs and writings. Take good care, Suzanne

  14. StevefromMA says:

    Hi Donna,

    Thanks for posting as it’s always helpful to see what other options there are that have been helpful to some people. I wish I could say something has helped reduce my pain down from the daily 6-8 but my Tramdol/ Tylenol combo stopped working a long time ago except for occasionly taking the edge off. I see the PCP who is managing my FM for a yearly appt. next week. We will do the same dance where he says ” so it’s helping” and I say not much and he says find another specialist though we both know there’s not much left to try. I haven’t tried the infrared sauna though and will look around as the cold and damp weather coming in here to Cape Cod has worsened things even more for me. I stated Qi Gong a few weeks ago and am finding it painful and exhausting but, like everything, it seems to help 30% of us LOL so I will tough it out for a while. One thing I haven’t tried is flotation therapy, not close to me, but that has some positive results.

    • Steve
      Have you tried the doc at brig & women? I Hear she is good and I’m going to give her a try

  15. Michelle Lindsey says:

    Hi Donna! Thankyou so very much for your blog. I am so thankful I found you when I did. My journey has been SO similar to yours!! I too have Fibro and Chronic Lyme with coinfections as well as Interstitial Cystitis. I am also on the Vital Plan Restore Kit protocol. I am in my second month. I just wanted to say hello, and Thankyou, again!! 😊

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Michelle, so nice to hear from a fellow Lymie! How are you doing on Vital Plan? Do you think it’s helping you? Anything else you’ve tried that seems to be working? Aside from the chronic pain, I think the bladder dysfunction is the toughest symptom I live with. It’s just miserable when you walk around feeling like you have to urinate all the time. I know IC is horrible as well. My urologist is considering diagnosing me w/ that since I haven’t responded to the usual medications for urinary urgency. The hyophen seems to help a little but there are still days like today where nothing is helping.

      • Donna Kuhn says:

        i was able to get rid of IC after a couple of awful years. i did acupuncture, followed the IC diet which is very limited, took prelief and aloe vera, started juicing, took quercetin.

        • Donna Gregory/FedUpwithFatigue.com says:

          Congrats! From what I’ve read about it, it sounds like it’s tough to control.

Trackbacks

  1. […] When I started working with my latest Lyme/fibromyalgia doctor, he told me he believed most of my symptoms were caused by inflammation instead of the infections I’m fighting. He overhauled my treatment protocol to address inflammation, putting less emphasis on managing the symptoms of Lyme and fibro. I was skeptical, but four months later, I’m a believer in his theory. I feel better now than I have in a long time. I think he was absolutely correct in saying I would improve if I could reduce body-wide inflammation. It’s a different way to approach treatment and one worth exploring. You can read more about my protocol here.  […]

  2. […] My current treatment protocol for chronic Lyme and fibromyalgia […]

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