Five months since the last health post, and six-plus months since the big-ass reinfection began, and maybe I’m finally past the latest Lyme. Again, as always, I’m not even close to a doctor, not recommending anything, just relating what I found and experienced. YMMV, ask your doctor.
See the studies I linked to below and TAKE THE WARNINGS SERIOUSLY.
Found this study that found efficacy of Dapsone, a sulfone antibiotic, in conjunction with other antibiotics, against relapsing and remitting Lyme disease despite extended prior antibiotic therapy. Dapsone is NOT for everyone. You’ll need a blood test first to determine if you have a certain marker indicating you should NOT take it. It has been typically used for leprosy but also for brown recluse spider bite, a type of AIDS side infection called Pneumocystis carinii and other dermatological indications. It can also cause a possibly-fatal Dapsone Hypersensitivity Syndrome (DHS) or hemolytic anemia. Neither of which I’ve developed (lacking 2.5 of the 3 main symptoms), but DHS can take maybe up to 6 more months to manifest. As someone famously said, “We’ll have to see what happens…” But as of this writing, I’m feeling pretty back to normal. My normal, anyway.
Something similar to that first study’s Double Dapsone therapy (DDDCT) is what I started on Oct. 21, twice daily, but it can also be single, once daily, plus I also took Cefuroxime 500mg BID. Also hydroxychloroquine was recommended by my doctor, but I stopped that within a week as I developed roof-of-mouth sores and found some documentation that HCQ could interact with Dapsone to cause that. Those went away when the HCQ ended.
The study’s DDD CT consisted of 2 months Doxycycline 150mg-200mg BID, rifampin 300mg BID, HCQ 200mg BID, Nystatin 500,000-units 2 tablets BID, cimetidine 400mg BID, and the tapered-up Dapsone (see the study link).
Also key: taking (more) folic acid and probiotics, even for several months after stopping Dapsone.
The study showed results from a total of 7-8 weeks:
“all three patients’ major Lyme symptoms remained in remission for a period of 25-30 months. A retrospective chart review of 37 additional patients undergoing DDD CT therapy (40 patients in total) was also performed, which demonstrated tick-borne symptom improvements in 98% of patients, with 45% remaining in remission for 1 year or longer. In conclusion, double-dose dapsone therapy could represent a novel and effective anti-infective strategy in chronic Lyme disease/ post-treatment-Lyme-disease-syndrome (PTLDS), especially in those individuals who have failed regular dose dapsone combination therapy (DDS CT [HCQ, tetracycline, nystatin, cimetidine, rifampin, dapsone]) or standard antibiotic protocols.”
Four weeks in, by Nov. 18, severe fatigue and shortness of breath started for me, as if a giant was crushing my chest. Nonstop headache began. Trouble sleeping. I wondered if Dapsone was causing anemia, and learned it can cause hemolytic anemia. Urine had been darkened for awhile (a known side effect), but no pain or other bad effect.
Began using Duoneb + budesonide nebulizer treatments multiple times daily, upped Mucinex to 1200mg BID, stopped Dapsone and Ceftin Nov. 22 and started 50mg Prednisone, tapering down by 10mg every other day. For such side effects, I read, the best approach was “the immediate discontinuation of the offending drug and prompt administration of oral or intravenous glucocorticoids.” Check and check.
It’s possible the shortness of breath was actually caused by enlargement of liver and/or spleen and/or kidneys, as the nebulizers did not help as much as expected, and because eating even a tiny amount of food felt made me feel like the TurDucken pictured. There were no other symptoms from such organ inflammation.
Blood and urine tests Nov. 26 showed zero eosinophils and otherwise fine markers, no hemolytic anemia and a return to normal. I was on 10mg Prednisone and multiple nebulizers daily till Dec.11, stopped needing daily nebs the next day. Breathing returned pretty much to normal.
I cannot describe what the ability to freely, effortlessly, breathe in deeply, and not feel like it wasn’t enough air, feels like. (THAT has only been possible since beginning Fasenra shots and allergy shots, May 2023. Thank God insurance covers both. Before that, I hadn’t breathed that cleanly in maybe 20 or 30 years.)
Dapsone can take 35 days to clear the body, so maybe by December 27, I will be 100% clear of it and not needing any more steroid and nebulizers.
As far as the Dapsone’s positives: the Lyme pain and arthritis had 100% already subsided before I started the prednisone. It felt like I’d gotten all new joints and shaved 15 years off my body. The pain, lack of mobility and even simple strength had been a constant in shoulders, knees and especially hips and upper thoracic spinal column since even before the big new infection + 2 huge rashes began May 22 and July 1. To the point of not being able to lie on either side or on my back when sleeping.
But shoulder pains/arthritis have returned once the prednisone stopped. But hips and back seem much better than before Dapsone. Which I can never take again, of course.
Also two other items of note:
1) Japanese Knotweed, 1 capsule by mouth daily on an empty stomach, was studied (published in Frontiers in Medicine by researchers from the Johns Hopkins Bloomberg School of Public Health and colleagues at the California Center for Functional Medicine and Focus Health) to be useful in eradicating Lyme spirochetes,
and
2) I found a study of essential oils, in vitro anyway, eradicating Lyme spirochetes, biofilms, persister cells, in particular clove bud and cinnamon bark. Some of these studies are old, yet no one has ever “lotionized” these products into a topical? And no one ever did any in vivo studies? Yet those two products were gangbusters for killing this shit in published peer-reviewed studies? Starting to sound like the Medical Industrial Complex didn’t want to solve the Lyme Disease debacle they prefer to ignore and dismiss?
When I found that research, I still had a faint rash on the knee, but the right shoulder rash (and underlying pain and seized-up stiffness of frozen shoulder) had just erupted and was raging. That rash was so bad it was getting scaly, almost reptilian, flaky, and the skin was numb to the touch. My fingertips relayed to me that I was touching the shoulder rash, but there was no feeling from the shoulder skin whatsoever.
So I bought Japanese Knotweed oral capsules, clove bud oil and cinnamon bark oil. Not just “clove oil” and not just “cinnamon oil.” There’s a difference. I had only EVOO in the house, so I dug up an essential oil mixing chart online, went safe with 7 drops of each oil in 50ml of EVOO, and started smothering my shoulder joint and rash in the stuff at night. For a week or two, I also used the mixed oils on full left leg, both arms, neck as well. Within 20 days of starting these 3 products, but 2 months before the Dapsone regimen started, the shoulder rash completely healed, feeling returned in the skin, and the severest pain and stiffness diminished greatly. You could use Jojoba oil as the main oil for mixing, but since I’m not fancy, EVOO is cheaper, works just fine and the scent of the 2 essential oils overwhelms the EVOO scent and is quite refreshing. I have since added both the essential oils to every bottle of hand/body lotion I have.
FWIW.
Praying I’ll be able to return to weekly ‘Stacking soon, in particular the promises listed in this post: “Revealing Your Abortion to Your Other Children” including:
“How do I tell my story without bringing my young children into it?”
“What age is right to tell them?”
“How do I answer the question, ‘What happens to aborted babies who don't get baptized?’”
“How do I deal with my fear that telling them will change the way they look at me?”