January 8, 2019 at 9:37 pm #463608
I just came across someone in a facebook group I belong to who says it is important to take prednisone before you start on antibiotic therapy because it’s more effective when there’s little to no inflamation. I haven’t read that anywhere and wanted to hear other’s thoughts about this. Thank you.January 8, 2019 at 10:04 pm #463609
Ann, if this helps, the most reliable go-to resources for AP are the Henry Scammell book, the FAQs, and Doctor Packets on this site. Patient experience of AP is very individual, so it’s worth reading these to get a good picture of when/how/why Brown used prednisone.
While Brown did use small doses of prednisone to help with intolerable herxing or flaring, it’s not always necessary in every case and may even slow progress in some cases (e.g. Lyme disease which proliferates with immune suppression). Taken for too long, prednisone can also be a beast to taper from. Some folks actually do better by learning how to eat an anti-inflammatory diet and how to implement detoxification methods. Some supps are also effective anti-inflammatories.January 10, 2019 at 8:47 pm #463631
Thank you. I have the book and need to read it again. I was just tested for Lyme (Western Blot Test) and the results are negative. I know there is a more sensitive test but my doctor said they don’t order it. Do you know what that test is and if I should try to get it to at least rule Lyme out?January 11, 2019 at 1:00 pm #463632
Ann, very happy to share what I know about Lyme and other tickborne diseases with you. As a primer, I’d suggest checking out FAQs 31-36 first under “Other Important Questions.” If you have any questions afterwards, please feel free to post here.
Some key things about “Lyme”:
1. Various tick species in the US are passing on multiple infections in addition to Lyme disease and the umbrella term “Lyme” is confusing, which is why many LLMDs are now calling it “MSIDs” (mixed systemic infectious disease syndrome). This makes the decision to get testing complex, especially when no tick or rash was seen.
2. Other tickborne diseases can mimic Lyme disease in terms of signs/symptoms and sometimes a person has these infections, but not Lyme. So, testing for just Lyme can delay diagnosis of infections that require different, targeted antibiotic therapies. Some strains of Lyme (e.g., borrelia miyamotoi) produce no identifiable rash, but cause equally severe symptoms.
3. There is no one test that is definitive for Lyme, because it is an elusive infection that drills out of the bloodstream and into the lymphatic system and other tissues very quickly and is immune-suppressive, which can prevent adequate antibody production for testing. VA passed a bill in 2013 requiring doctors to have patients sign a document stating that they understood that Lyme testing can produce false negatives.
4. Experienced LLMDs have preferred labs for various tick-borne infections (e.g., IGeneX for Lyme or Galaxy Diagnostics for bartonella), so if a person has had past known exposures and lives or has traveled to a Lyme endemic region and is questioning Lyme, the ideal is to visit a LLMD for a full workup and clinical diagnosis to save time and money.
5. Lyme is very contentious and more accurate testing is needed to resolve the politics. Some states now have laws protecting LLMDs for treating patients with long-term antibiotics for Lyme disease, which is currently outside the standard of care. This is why many LLMDs are out-of-network and are private-pay and this, in an of itself, has created a muddy climate of docs who dabble in Lyme vs. experienced, highly-trained/skilled LLMDs.
I can think of a lot more, but hopefully this will scrape the surface to share just how tricky the “Lyme” question can be and unfortunately it is why there is no simple answer to your original question! As just a fellow patient insight, however, and from personal experience, for anyone who has a past history of known tick bites, or who lives in or has visited a Lyme endemic region, would be to cut one’s losses and go see an experienced LLMD for a full clinical workup. If tickborne illness really isn’t a question, then choosing a simpler protocol with AP monotherapy (minocycline or doxycycline only and sometimes choosing to start with IV clindamycin) makes sense.
I know this doesn’t help much at this stage, Ann, but I hope it will at least provide some insight as to why there is no simple answer to your question and ultimately after doing some research on the subject, only you will know if it’s worth seeing a LLMD.
Ann, I know it’s a nuisance, but any chance you could add a signature line to share your diagnosis and past/current treatments? It can help a lot to generate replies from folks on the forum if they can relate to a person’s circumstances (see simple instructions to do this in the announcement threads above).January 13, 2019 at 10:35 pm #463637
Thank you again. I will add a signature line shortly as I am going to see a doctor tomorrow morning about antibiotic therapy. He is not familiar with this but he will prescribe it if I ask him. The problem is I’m not sure where to start. I read 50mg 2x daily of minocycline for 30 days and then 100mg. It’s either this or mexotrexate and I’d much rather try this. I can’t seem to find an article or post on here that is definitive so if you could point me in the right direction, I would greatly appreciate it. Thank you again for all of you help.January 13, 2019 at 10:51 pm #463638
Can you share which rheumatic disease you are dealing with? This can have a bearing on how to begin AP.January 14, 2019 at 6:02 pm #463642
I have rheumatoid arthritis.January 14, 2019 at 7:31 pm #463643
Thanks, Ann. Knowing this helps because pre-existent inflammation levels can help determine which starting dose to attempt. If you read the Pulsed Protocol Doctor Pkt under the Resources tab above, it explains why this occurs and how to begin on a tolerable dose of minocycline without experiencing intolerable herxing. Dr. Brown describes all this in more depth in the Henry Scammell book, The New Arthtitis Breakthrough. RAers tend to have higher measurable inflammation (CRP and Sed Rate) than someone with scleroderma, for instance, so starting doses are different.
AP is a very slooooow therapy with no overnight miracles, and treating too aggressively at the outset can lead to the need to dial back the dose, which is trickier to do than slowly dialing it up. This treatment isn’t like treating an acute infection with a big whack. If one is treating just mycoplasma, for example, it is a slow-growing/replicating bug, so doesn’t require daily dosing.
Hope this helps and makes sense. You will also find a brief description of this in the FAQs under FAQ #13, but all the FAQs are worth reading thru as you will find lots of commonly-asked questions before and after starting treatment, like why it’s critical to also use a good quality probiotic and ideal times to take these.
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