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I have been a lurker on this site for over 2 years. I am sorry that I haven’t contributed until now. Here is my story:
Jan 1996 – Flu like symptoms and eventually every single joint in my body was in pain
Sep 1996 – Diagnosed with Lyme from a very good Lyme doc in Boston (the time in between this and above was spent going from doc to doc – I was told that I had RA that summer) (I underwent treatment w antibiotics and the pain/swelling seemed manageable for a while)
Early 2000s, I tried a number of things for the “RA”… Vioxx, Methotrexate and more)
2005 – I went on Humira which worked well for me to eliminate pain/swelling – felt pretty much normal on it, exercised a lot, pilates etc
2013 – My basal cell skin cancer started getting much more aggressive (I have Gorlin’s Syndrome and I have had over 30 surgeries on my face/scalp – first skin cancer at 17yo) and I was advised to get off the Humira by my skin doc.
2014 – Approx 6 months after I was off the Humira, the RA symptoms came back full blown. I tried naturopath things… did blood test for food allergies, avoided gluten, dairy, eggs, any kind of pepper, sesame seeds, (note, i did not realize i had food sensitivity to anything other than dairy and gluten).
2014 – I was tested for mold and mold sensitivity (both negative)
2014 – My naturopath doctor in NH (K.F.) had me pulsing with Tindamax and Flagyl. I had a major herx one night in my hands (where all of my issues were then) after taking the tindamax one night – my hands swelled like clown hands…. and went into full remission one night shortly after while I was on these (I could make a fist with both hands which i hadn’t been able to do in over a decade… and then woke up and hands were back to same/RA/swelled; I never had these experiences again while pulsing)
2015 – I went to a hospital in Boston well known for their arthritis center… I was told my only option was Methotrexate, they were uninterested in any naturopath work – the results with antibiotics etc.
2015 – A couple weeks after my hospital appt, I started treatment with high powered magnets for Lyme (bartonella, babesia, a variety of bacteria, viruses, micoplasmas and more). (Google: Certified Lyme Magnetic Protocol Practitioners …. initials JR) I am STILL being treated with this protocol btw [side note – they are trying a new RA protocol on me now]
2016 – I was tested for heavy metals (blood test) and was super high on copper, lead and mercury (mercury likely because i was eating a lot more fish)
2016 – I was also following medical medium diet with the smoothies (lots of cilantro, blueberries etc) and started drinking celery juice in the morning
2017 – I did a heavy metal detox using prescription meds (prescribed by a naturopath doctor in Maine, P.M.) and got my levels back to normal. This doc was also the same doc who told me about the book The Road Back a year or so prior… unfortunately, I didn’t read it until around this time.
2017 – Started getting night sweats (peri menopausal…) and got back into the celery juice and the night sweats vanished!!
2017 – I also started looking into pH around this time. I read that chronically ill ppl tend to be very acidic and if your alkaline is high, it is impossible for the bad things to exist in you (I even read in one arthritis book if your alkaline levels are high, you won’t have RA, period) I got the strips from Amazon and I was super acidic, something like 4.5/5.0.
Sept 2018 – Started AP (Doc in Maine, P.M.) with generic minocycline (Torrent) MWF and stayed on it for 6 months… symptoms getting worse – shoulders getting limited range of motion and hands/fingers continue to get swan neck/worse and knuckles swelled etc.
May 2019 – I switched to Solodyn (brand name for Minocin, time released purple caplets, 105mg, MWF) Solodyn manufactured by Valeant Pharmaceuticals which I believe is the company that purchased the brand name time released capsules from Lederle…I believe this is the closest you can get to brand name minocin w my own research in 2018. My insurance covered the first 30 caplets and then coverage got less and less and they don’t cover at all now, it is roughly $34 a pill. I go to a very small pharmacy in town that has been helping me with research etc (I dropped CVS even though my work plan encourages me to go to them).
August 2019 – I noticed nodules/lumps on my forearms (some of them getting quite large), I read that this is a symptom of advanced RA that happens w some people. I upped the celery juice to drinking 16 oz 2-3x a day (I bought thermos to bring to work…). (I had gotten lax in my celery juice intake prior to this…) and lo and behold the nodules disappeared after 3 weeks of this!!
October 2019 – My doctor in Maine (P.M.) recommended I go on Valtrex (anti viral) for 4-6 months when he learned my magnet practitioner is working on a bunch of different viruses in me. He said it wouldn’t hurt and I believe he told me that he had someone w RA who started feeling better after being on it for 4 months.
December 2019 – Still trying to raise my alkaline level, I have been between 6.5 – 7.25 for almost a year now, it is hard for me to get it past 7.25. I’d like to get it to 8.0/8.5 and hold it for 3 weeks at that level (I read that some guy cured his own stage 4 cancer with baking soda and staying in that zone for something like 10 days – though you need to be very careful with this) A good read on this topic is the book, Sodium Bicarbonate: Nature’s Unique First Aid Remedy, by Mark SircusNote: I was on LDN 4.5mg for over a year, it does help a bit. I have been off since Sept due to recent skin cancer surgeries.
As of 1/8/2020: Solodyn 105mg MWF & Saturday, Valtrex (1 gram, 3x a day), Plaquenil (200mg 1x a day), Probiotics, Vit B, Calcium & Magnesium, D3 (10,000 per day), Zinc, Vitamin C (at least 5 grams a day), Glutathione, Klaire Labs Bi-Carb Formula (for increased alkaline) 4x a day. CurcuPlex-95 by Xymogen, 16+ oz of celery juice first thing in the morning (nothing added to it). Magnets. Acupuncture. Diagnosis: RA 1996 (which came on suddenly with Lyme infection).
"The journey IS the destination."
As a newbie, I realize now that I messed up when i created TWO posts on January 1st — I should have had one jumbo post. The above highlights my timeline (as i am new here). I have tried other things as well, I felt the above were the most interesting/helpful to this forum. My 2nd post where I talk about “present day” is here as an fyi, https://www.roadback.org/forums/topic/present-day-ra-diagnosis-since-1996-whats-worked-for-me-so-far-and-more/#post-465191
As of 1/8/2020: Solodyn 105mg MWF & Saturday, Valtrex (1 gram, 3x a day), Plaquenil (200mg 1x a day), Probiotics, Vit B, Calcium & Magnesium, D3 (10,000 per day), Zinc, Vitamin C (at least 5 grams a day), Glutathione, Klaire Labs Bi-Carb Formula (for increased alkaline) 4x a day. CurcuPlex-95 by Xymogen, 16+ oz of celery juice first thing in the morning (nothing added to it). Magnets. Acupuncture. Diagnosis: RA 1996 (which came on suddenly with Lyme infection).
"The journey IS the destination."
Martha, so finally were you taking Valtrex?
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous
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