Update #3: 39 Weeks Into Treatment
Updated: May 12, 2021
It has been 11 weeks since my last update. Long-term antibiotics are tough on the body. This disease is tough on the body. These last 11 weeks have been full of migraines, headaches, facial pain, tremors, shortness of breath, difficulty walking, tinnitus, multiple rashes, skin pain, lower limb discoloration, dizziness, nausea, postural tachycardia, hand pain, multiple neuro symptoms, sore throats, albuterol puffs, tooth pain, fatigue, excessive neck pain and rheumatic symptoms. If you’ve seen my Pre-treatment symptom chart, it sounds a lot like the usual. These are my ‘Standard Variety’ symptoms; they were just more severe and flared. It correlated with my up-titrations of Clarithromycin (which is a good thing). Same with that nasty metallic taste which occurs a few hours post Clarithromycin, every time…without fail! The benefits of the drug outweigh how gross the taste is. Even though I feel so much better than my pre-treatment trends, the flares are hard to appreciate, the cumulative effects weigh on you. Just have to keep working through it. Luckily, I still have “good days” and live a life of gratitude. I capitalize on that as much as possible!
A lot has gone on. I broke this update down into two parts. The one you are currently reading is a general overview with breakdown of October and November, then a separate one includes December.
Around the time I published Update #2, multiple physical injuries had occurred. This has been a pattern over the last 3 years… short periods with no injuries followed by multiple debilitating injuries. It’s no surprise, I’ve been diagnosed with an Undifferentiated Connective Tissue Disorder (UDCT) and Inflammatory Arthritis. One of the major components of this disease are it’s disruption of connective tissue and cartilage. Both my hands were in braces. My thumbs were not able to go through range of motion, the small joints of my hands felt like concrete, my right knee was painful and swollen, my lower back symptoms flared (spinous process pain, quadratus muscle spasms, shooting pains into my right leg, lower limb numbness and tingling, inability to twist and bend and difficulty walking)…and my skin…yet again, developed a hypersensitivity reaction. It was a diffuse rash that progressed to an excruciating burn over the right side of my back and obliques.
Literally felt like I was minutes from blistering, as though someone was holding a torch to my skin. That was an experience I hope to never revisit.
This disease is the most challenging thing I have taken on in my life. The med schedule alone is a Full-Time job, not to mention all the collateral of symptoms and sequelae (any abnormality following or resulting from a disease, injury or treatment). I’m not exaggerating when I tell you I was less busy when I had a career, social life, dating life, my hobbies, travel, recreational sports, worked out, and was involved in outreach. My energy is much less now and with chronic illness, there are no reserves. Maybe that is why I felt less busy...It takes all I have to currently maintain. It is going to feel so liberating when we finally reach maintenance therapy. That’ll mean my medication schedule is more flexible and my symptoms are potentially resolved = more capabilities = freedom. That is going to be a damn fine day. These updates are getting harder and harder to write but ever so important. Similar to intentional procrastination… Not because I do not want to, it is because there is so much happening to my body, all the time. Hard to explain unless you’ve lived complex, chronic illness. Tapping into a constructive reflection of treatment progress is overwhelming. Having different parts of this path documented is well worth it, especially if it can help another individual in pain.
There continues to be subtle improvements. The daily Baclofen has really helped calm my spasms. The physiologic hydrocortisone has continued to help with my fatigue. My spinous pain is mild, my physical energy is improved and my mental energy is a bit better (although any application results in exhaustion), my ability to organize thoughts is improved, but inconsistent (depends on the day). My long bone pain, joint pain, greater trochanteric bursa and both my hips are no longer excruciating (the right one is causing more pain right now than my surgical hip). There are still bad flares (cyclic in nature), but for the most part, the rheumatic symptoms are tolerable. My hip flexors are not spasming as much. Lifting my leg was impossible this time last year, but now I can put my shoe on without severe pain. My photophobia is MUCH better with current interventions and my hypermobility is less in my wrists, elbows and fingers. My Achilles injuries are improved and we have been able to go on a few walks with Pancake. The bladder is a little less irritable! My balance is significantly better and my sleep is deeper. We found a great combination of PM meds to help me get more restorative sleep. Insomnia is a feature of this disease and I am glad to see it go! The myofascial pain is more responsive to Theradrill vibracussion and the FAR IR Sauna. My left hand is BACK in a brace, BUT overall, my hands are much MUCH better! I’ve even been able to do a little painting!
Constructive = Rewarding
I have not specifically talked about the dermatologic side of things, but plan to publish a more informative post. ‘Bartonella Associated Cutaneous Lesions’ (BACL) are quite common and I have experienced them all. This last reaction was in a league of it’s own. We are not sure why it was so severe….was it due to a presumptive chemical burn from a compounded prescription pain cream, or just another hypersensitivity reaction from my Mast Cell Activation Syndrome to one of the chemical ingredients in the compound? Luckily, the skin flare responded to increased antihistamines and SSD cream application, resolving within 2 weeks. Since starting treatment, reactions like this do not happen as commonly but they were a very frequent, and an intolerable, progressive issue (all of which start post Cat Bite in 2017). My skin was severely hypersensitive, it developed mottled discoloration in some areas, striations, peripheral swelling, spider veins, unexplained bruising, pinpoint rashes, hives and a generalized burning sensation. Symptoms are more moderate now. I have only been able to wear soft sportswear for about 2 years. Doc says she has a little celebration for her patients when their skin improves enough to handle real clothes!
There is so much more! The pics don't seem to capture the misery of it all.
My case profile was included in a recent publication in the Journal of Pathogens.
The special issue is entitled “The Evolving Biomedical Importance of Bartonella Species Infections” and the article is titled “Bartonella Associated Cutaneous Lesions in People with Neuropsychiatric Symptoms”. I am thankful to be a participant of the study and hope there are more to come
It is interesting how the distribution of my skin irritation occurs over areas of previous injury and trauma (my left hip, right lower back, sides of my stomach, right shoulder, left shoulder, top of hand, bottom of wrist, etc). Bartonella thrives off inflammation. It is how it seeds new regions of infection within the body. The newest development are small cherry angioma’s everywhere, little blood blisters. They are small, flat, nonpainful, secondary to the small vessel component of Bartonellosis and of no concern per my reading. My next recheck is toward the end of December, we’ll see what Dr. JB has to say.
This month was not good to me! The symptomology felt so challenging. Like I mentioned above, I could not use my hands, I could barely walk, the nasty metallic taste was ever present and my skin felt like it was melting off. There was a highlight though!!! My older brother celebrated his 42nd birthday! Another highlight, we had amazing weather. Pancake, Mom and I were able to spend some time outside. My 4th recheck was on October 20th. Per usual, my doc did not skip a beat. Major changes included the addition of B complex, holding Clarithromycin at ¾ full dose to incorporate Methylene Blue into my protocol and working up my Sauna sessions. Yes, you heard right…Methylene Blue, the laboratory dye. Mine is specifically compounded by Hopkinton Drug in Boston, but the two are one in the same! It is used commonly in patient’s with Interstitial Cystitis (which I have) BUT ALSO, a recent study found that the maximum drug concentration in serum had the capacity to completely eradicate the stationary phase Bartonella henselae after 3-day drug exposure in subculture studies. If you remember back to my previous posts, Bartonella has a stationary and lag phase. The stationary is the more difficult to target. How it will relate to bactericidal effects in vivo (within the human body) is going to be fun to trend. My initial starting dose was one capsule, every other day. My Urologist was happy with the addition and yes, my urine is blue…smurf status.
My good friend, Amelia surprised me with a custom necklace, encouraging card and an adorable drawing of Pancake (my dog). The necklace is a tradition. She recently battled 2 types of breast cancer and is in remission!!!! A girl she met during chemo was given a similar necklace three years prior by another survivor. She continued the trend, later gifting my friend a necklace after her surgery. Now Amelia is passing it forward with hopes it will me through this battle as it did for her. It is pretty perfect and when I wear it, it absolutely feels superhero status. My hands are the limiting factor. I would wear it every day if I could, but sometimes can’t operate the clasp.
Doc also performed a comprehensive panel to re-assess my essential mineral and heavy metal levels after the last few months of supplementation and sauna use, respectively. There was a profound deficiency in molybdenum levels and slight concern with my manganese levels. Zinc, Copper, Calcium, Magnesium, Iron, Potassium and Phosphorus levels were perfect. I did not have any heavy metal toxicities but there was a “boron toxicity”. I had to WebMD it:
…..and other symptoms I already have
While we do not know the definitive cause of the toxicity we think it might have been a supplement I tried from Amazon. The world of supplements lacks regulation so when you venture out, you never know the quality or potential contaminants you may be ingesting. I definitely learned my lesson. My intentions were pure. I was trying to find a capsule that combined Curcumin, Ashwaghanda and Rhodiola in one. Anything to minimize the number of pills/day consumed. We discontinued the product and Dr. JB put me on BCQ120 and HPA Axis Herbal Adapt Adrenal Support. I felt an immediate difference! My inflammation felt a little less and my physical energy was largely increased (albeit far from normal). Selenium levels were nearing the high end, so we discontinued supplementation for now. She also scripted Manganese x 3 months ONLY and Molybdenum q24 until directed otherwise.
Molybdenum is actually a really cool essential mineral. Humans need very small amounts, thus deficiency is considered extremely rare. Randy Gomm (founder of Radiant Health Saunas) first introduced me to some literature on it. To my surprise, only a few weeks later, we confirmed my levels were critically low. This trace mineral contributes to a multitude of things: functions of the Nervous System and Kidneys, plays a role in energy production at the cellular level, some studies from the American Cancer Society even note its potential to counteract the damaging effects of certain cancer drugs on the heart and lungs. Most importantly, it is required for the function of four enzymes: sulfite oxidase, xanthine oxidase, aldehyde oxidase, and mitochondrial amidoxime reducing component (mARC).
Pretty dang important trace mineral! I was hopeful it would help the glorious gas situation, and while it has helped dramatically…the wonderful aroma of GI dysbiosis continues on!
This month started out great. My cousin, Kyle stopped by on his way to Reno, Nevada. It was a perfect Colorado day, abundant sunshine with snow still present in shaded places. It was hard to not be able to hug him. He is a brother to me. We had lunch on the front yard…>6 feet apart, threw a couple snow balls and caught up a bit. He bought us a gorgeous Orchid and an African Violet flower. Which just so happened to be my great grandma’s favorite flower.
A few hours later, he was on his way. Then I took a dive into the pooper. Not even 24 hours later, my TMJ trismus was in full force. The muscles on my right TMJ were spasming so severely that I could not chew or open my mouth. By November 22nd, after weeks of muscle relaxers, heat, TMJ stretches and visits to my amazing Chiropractor…my TMJ finally released. Just in time for my first Gluten Free, Dairy Free, Organic and low-sugar Thanksgiving Dinner (which was delicious). This trismus BS has happened once before after a botched nerve block and root canal in March 2018. It is so frustrating and of course, the headaches, facial pain and neck pain were non-stop. I was able to finish and officially submit my SSDI application which was a big accomplishment. This was extremely challenging because it focused on comparing my Pre-illness life to my Current illness-related limitations. It was hard not to internalize the objective and repeated loss of my capabilities brought to power on paper. Luckily, it is done and I am praying for an approval. Other blessings were how delicious are homemade paleo Pumpkin Pie was and digitally celebrating my Lil Brother’s 37th birthday! My brothers are such special guys. I have really been blessed with an amazing family. Their significant other’s are equally amazing and my mom continues to be my saving grace! None of this could be happening without her.
**[Picture timeline included in December's post]**