Recheck #1: Summary of Discussion Points
*Disclaimer: Notes outlined below are unique to my case and disease profile. I have shared an edited summary of my Doctor's discussion and approach to assist others in learning about Bartonellosis. However, this should absolutely not be used for self-treatment. Please consult your doctor*
5.8.2020 (2 months into Phase 1):
Began discussing my joint pain, tears, boney changes and soft tissue injuries. All part of Connective Tissue Component of Bartonellosis
MRI-went over all recent MRI's (C-spine, T-spine, Lumbar Spine, Brain and bilateral hip findings)- stenosis at C5-C6 (right shoulder pain left arm numbness, possibly related); Spondyloarthropathy and facet arthropathy: ligamentum laxity caused the bridging/spondylosis and boney changes along the spine- body's attempt to stabilize. Bilateral leg numbness and pain, lumbar changes vs disease pathophys. Treatment should resolve joint pain as hypermobility improves; if any hot spots left post treatment (PrP, Novacaine, etc)- no invasive procedures are recommended at this stage.
Bartonella can take years on poly-ABX therapy and long-term Herbals- As previously discussed, treatment of Bartonellosis requires at least two intracellular antibiotics. Fantastic study published looking at 2 drug regiments for bartonella. Single meds do not work. This is a multifaceted disease that needs a multimodal approach...had a patient as bad as my case and is now able to work 12 hours without pain. Do not stress about the joint degeneration and tears that have happened. Decline all invasive procedures until disease is better controlled. This will get better.
Joint replacements in patients with Vector Borne Disease, and surgery typically goes very wrong and should be avoided during treatment or at all if possible.
What is an Ozone Joint Injection? Novacaine first- Resets cell membrane to resting potential. If resting potential is low, it is easily upset/over responsive. Ozone sets the membrane potential higher, so body is less responsive to any stimuli. Ozone reacts with lipids and proteins. Sets off a cascade of signals to upregulate anti-inflammatory enzymes and materials. Hyper-oxygenate the area, reacts within milliseconds, creating an oxygen rich environment which is great for healing
PrP Injection: will help with regeneration of tissues and cartilage. Recommends waiting on joint injections. Patients with tick borne infections don’t respond well to this intervention until the bacteria burden is lower, can discuss in a year or two. Can absolutely make things worse. Any inflammation, good or bad, is what bartonella wants and where it infiltrates
EKG had normal QT interval (important), intermittent VPCs. Continue Coq10.
Considering Methylene Blue: recent study showed surprise effect on Bartonella but they are unable to find labs to test levels-MIC s very low- Unsure what therapeutic range is but shown to kill bartonella in both lag and stationary phase, can help with bladder symptoms, sometimes used in interstitial cystitis. Dr. JB sent paper. My Urologist, Dr. W 100 percent approved as well. Used in Urogesic for Interstitial Cystitis. Can help with relief there and shows good coverage for intracellular disease. Used to treat Malaria and Babesia. ON the surprise list of meds that work well with bartonella. Downside, it is expensive. Lacking ability to measure blood levels of MB and how it translates to in-body availability. Bladder irritability will come down as bacterial load comes down.
Phase 2: Clarithromycin/Bioxin: Excellent for Lyme and Bartonella. Good addition to the Bactrim. Powerful cytochrome inhibitor. Inhibits that enzyme and with rifampin on board, that combo pushes pedal to the medal for penetration. 500 mg tablets. Start low and slow. I do not get to add in this drug or any other until I am at a final Bactrim dose that my body tolerates. Never add in new antimicrobrials while herxing. START ½ pill q24 hours, see what happens. Shorter acting medication. Herx should not be heroic and nuclear like mine have been in the past with other meds. Well tolerated. If zinc deficient= will develop metallic taste= add zinc
Rifampin: Ideally, phase 3 will include rifampin but this drains off adrenals and currently, my adrenals are dumped, have to get that stable before we can pursue rifampin. Have to use caution, it can hormonally destabilize some patients; hesitant to do that with me yet b/c we are still working to stabilize hormones. Unsafe to do anytime soon but still on the table for future. Will revisit
2 months and already having subtle improvements. Dr. JB says that type of response is excellent and very promising. Some bartonella pt take 4-6-8 months before being able to experience any subtle improvements. Making ANY progress is encouraging.
White blood cells (Leukopenia/Neutropenia)- pathophys of cyclic bacteremia, repeatable in my case, will add in AHCC (mushroom derivative, used in some chemo patients). Other option: Astragalus: supportive for bone marrow; We will see if this helps increase my WBC levels, if not then we will use something else. Can be very supportive for adaptive and innate immunity.
Ferritin: Good to monitor for cyclic hemolysis, turbid urine can indicate hemolysis or changes in ferritin levels. Mom asked if I should be on one, Dr Barter wants to check ferritin next bloodwork appt and does not want to put me on it without knowing level – too much iron can feed forward the infections.
Haven’t needed Vicodin or valium since starting protocol- a few days where I was almost there but made myself with-hold
Photophobia: Expected; all part of neurologic bartonellosis Download F.Lux on all devices, Purchase Blue Light Blocking Glasses
Testosterone still too LOW- Increased Testosterone to 4 mg
DHEA still to low: Increase DHEA
Cortisol is better, but very low and only half what it should be. Continue therapy, re-evaluate next recheck
Progesterone normal for luteal phase
Serum Calcium is increased >9.5, THIS with my calcitriol above 55 acts as oxidized sterol and increases vascular damage, can also lead to calcifications elsewhere- Stop Vit D for now, recheck in 6 weeks. Vit D depletes easily in this situation so we will recheck often. I already have Small Vessel Inflammatory Disease and we do not need to add to that. Also want to avoid calcifications/mineralizations from building up anywhere in body, especially my stenosis
MUST CONTINUE DISMUZYME given current genetic mutations on profile for SOD and mitochondria; crucial part of cellular antioxidant defense mechanisms
In addition to Adrenal support, still doing Ashwagandha and Vitamin C
Increased NAC (N-acetyl-cysteine) to TID (three times a day)
Natura Menobreeze/Tranquility Supplements: can continue if positive response
BUHNER- has power drink for CFS patients- nutrient dense, may help with energy. will email
My postural tachycardia is manifestation of Bartonella’s vasculitis and secondary disruption of ANS (Autonomic Nervous System)
Rec FIR Saunas: 3 options: High Tech Health (built in)- Based in Boulder, CO import material from China and assemble in Colorado, Radiant Health Sauna (Modular)- Dr Barter uses this one, everything is sourced in BC, modular fabrications, easy to put together. Can disassemble when I move; Relax Sauna (Portable): mylar tent thing, infrared generator is a brick the size of cinder block, so so. Has her own EMF meters and done the leg work and research on these. These companies are her top 3 for quality and EMF
DO NOT restart Kudzu- likely perpetuated vascular shifts 4/5-4/13; "the head exploding symptoms" could have actually been caused by the Kudzu. Put it on hold, do not use.
Collagen: CONTINUE- Any Collagen is fine, as long as it is organic. Collagen is very important, continue to take routinely. Great Lakes has great product.
Migraines: Intracranial Hypertension? herx related symptom? Inflammation? Continue with regiment and trend
EMF mitigation: I have become super sensitive to technology and devices, had to stop wearing Fitbit or using Airpods due to focal arm pain and head pain during use, respectively. Options: buy a meter to be able to measure it. See if we actually need mitigation ie) if areas in my house that make me feel sick correlate to higher EMF readings then we can alter those areas or avoid. Will send link on amazon for the meter. Turn wifi off at nite, turn off cordless phones,Roku devices, fitbit. etc. Keep cell phone at a distance overnight
Muscle Exhaustion, Muscle Atrophy and Exertional fatigue: Twitching and muscle spasms too. Likely combination of the mitochondrial dysfunction and severe nutrient depletion (given my gene mutation in complex illness leading to nutritional muscle depletion at the cellular level and hormonal dysregulation). Usually a mitochondrial dysfunction problem where you have no muscle energy or stamina. This is very common with bartonella. Bartonella needs a ton of nutrients, it literally leaches what it needs, leaving your body at a loss. Focus on walks. Avoid exertion. Do not partake in strength training while in this current position, will further deplete
Urinary: In case of borrelia- some studies have shown the highest spirochete count in entire body is the bladder. We do not have that kind of study on bartonella, yet similar principles apply. Either lyme or bartonella can cause miserable bladder symptoms, similar to Interstitial Cystitis (We are treating for both). MCAS also plays role. My symptoms are Inconsistent. New development: in last 2 weeks (unrelated to water consumption), upon laying down- sensation to urinate is very strong. Yet urine output is very small with intermittent larger production, but the sensation persists. Not emptying bladder? Detrusor? Neurogenic bladder? It is at its worst when laying down while my body is relaxing. UTI like symptoms and bladder pain. UA was negative for infection. Likely Interstitial Cystitis like Symptoms, secondary to Bartonellosis and Mast Cell Activation Syndrome. Incorporate antihistamines, avoid triggers, see alkaline diet
Paresthesia: Numb hands and feet- sometimes one hand/both, sometimes just feet or from knee to foot. Lips, upper body vibrating (new), abnormal skin sensation- very common parasthesia symptoms- sometimes localized areas or feels like cell phone buzzing on my thigh but nothing is there. also experiencing extreme peripheral temperature changes.... Dr. JB ensures this is extremely common in bartonella and lyme, sometimes seen in babesia. Tremors static. Improves with treatment
Recheck BW in 4-6 weeks: CBC, full chemistry, electrolytes, vitamin D (storage and active form), recheck hormones (Once cycle gets more consistent, we can plan timing for blood draw better for hormones), ferritin, Magnesium. Phosphorus. DHEA. Recheck Cortisol, UA
Recheck Teleconsult in 8 weeks, shoot for beginning of July
Keep in touch via email