Not sure if it is “legal” to put in two responses into one response doc, here it goes:

Hi Bonnie Lou,

I don’t know what to expect from the new rheumatologist… I can report back after I see him. I suspect he will be traditional with his thinking. I am seeing him because I am seriously considering going on something like methotrexate if my joints (swans neck fingers, large knuckles), feet etc get much worse. I don’t want to be disabled. I can’t go on something like Humira because my skin cancers will become too aggressive again. My best friend is an ER nurse in Boston and she was soooo happy when I got off Humira as one of her nurse colleagues was on it, got a really bad cancer when on it and died shortly after; it’s dangerous stuff imho. And as a side note, if it were something like Methotrexate, I would continue the AP protocol at the same time. TBD.

Back in the mid 90s I also didn’t test positive for Lyme w the standard tests (I don’t know how it is now but back then with the ELISA test, postive ppl tested negative and negative people tested positive)… I had a Lyme Specialist doctor who did the Western Blot test and based on those results and my symptoms, he diagnosed me with Lyme and put me on Biaxin and several other things. I felt much better after his treatment which took over a year 97/98 (and I was pretty stable for a while, went through a major stress life event in 2000 and my arthritis got A LOT worse after that…). The majority of the rheumatologists I see do not believe I had/have Lyme (even after reading that same Western Blot result) but then again, they are not Lyme specialists. (I never had the bulls eye rash which is true for roughly 40% of the people – or perhaps it was in a place where I didn’t see it. I had gone hiking at a place in Maine where 10% of the residents at the time had Lyme). I consider the doctor (S.D. in Boston) who treated me for Lyme an angel, without him I would have been in a wheelchair I think. THANK YOU FOR REACHING OUT TO ME!!

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Hello Luck 20,

Not sure if you found my other post that has more of a timeline, here it is:

https://www.roadback.org/forums/topic/1st-post-ra-diagnosis-since-1996-whats-worked-for-me-so-far-and-more/

I suspect the Rheumatologist will offer treatment/drugs to treat the symptoms and not the root cause (or drugs that turn off your immune system so that your body thinks everything is great, e.g., Humira). He has good reviews as a rheumatologist, no idea how he will be with the Road Back concepts of AP. The rheumatologists I have encountered over the years really believe that your immune system is not working well and that your body is really attacking itself (I don’t believe this, I believe there is something there in my body that it is seeing as an invader and/or having the allergic reaction to the parasites and their die off and excrement etc.

I have already been on LDN which is mentioned in the timeline post. I got off it for a skin cancer surgery this fall (it does block pain treatment effectiveness of Tylenol with Codeine and I didn’t want to be in pain a week w the stitches etc). The doctor in Maine (P.M.) prescribes that for me along with the plaquenil, solodyn and valtrex. I have also made permanent diet changes based on what the food allergy test said i was allergic to (gluten, dairy, eggs, any kind of pepper / bell peppers etc, sesame seeds, sunflower seeds/oil, bay leaves and more — as an fyi, the only things i was suspicious to having allergies to was gluten and dairy, the other items listed were a total surprise, no symptoms for those – but they were putting my body in fight/flight mode).

I’ve also done 8 acupuncture treatments last year which I forgot to add to the 2019 timeline info.
I agree that our ailments are likely cousins! THANK YOU FOR REACHING OUT TO ME!!

Hi Maz,

It’s interesting you asked me if I have considered taking Solodyn daily… I discussed this with my doctor (P.M.) in earlier this year. He asked me if there were cases (data) to support taking it daily. What’s your opinion on that and if taken daily, is there a reasonable time frame to assess if the increase in AP are improving things? (e.g., do people try it for a month or six months?) At roughly $34 a pill, that obviously would increase my expense but I have already spent tens of thousands of dollars at this point since the mid 90s… and anxious to be in remission without any immune suppressants involved.

As a side note on my doctor in Maine, he said this past fall that it was amazing that I have little to no pain now in my hands as my hands look inflamed (and i was reporting pain in prior visits…), I can’t make a fist, my fingers are crocked etc….. so he thought that was a good sign!

Regarding my thyroid, I have two fairly large thyroid nodules (the largest being 6 cm). I just saw the thyroid doctor this fall and everything checked out okay (and they are not cancerous, they were just biopsied this fall as well). According to the Medical Medium, thyroid nodules are a sign of the body trying to corall off Epstein Barr virus…). Is there a symptom that can be noticed when the conversion from T4 to T3 is inhibited?

I appreciate your interest in my case. There is other stuff I have tried/done as well…. I just listed the highlights in my timeline.

Hi Linda L,

I too have heard that Plaquenil decreases the immune system… I was thinking that once I felt a bit better, I could try eliminating it. But that is a good point on lowering immune system… I was taking it mostly for pain and that isn’t so bad these days, it is mostly the inflammation that is my concern now. (I ran out of plaquenil a few years ago and my NH doc K.F. wouldn’t renew it until I went in to see her …. and I was in a lot of pain once the plaquenil wore off and before I got new prescription…).

I hadn’t heard that Methotrexate damages the immune system (I thought it was more of an inhibitor, so that once you get off it and it wears off, your immune system will kick back in)…. do you have specifics on what is damaged? I need to better understand how Methotrexate operates for RA patients. Back in the early 2000s, my doc then pretty much said “we don’t yet understand why methotrexate works on RA patients as it is a low dose form of chemo for cancer patients…but it works” I was only suggesting this as a POSSIBILITY if my swans neck and other deformities don’t get under control soon (which i believe is being caused by the inflammation). I really don’t want to do methotrexate — that’s why i walked away from that doctor back in 2015 when she was suggesting I go back on it. I was in disbelief that in the 15 years since it was first suggested that I go on it (and I did for about a year) – that it was the only option for me (due to my skin cancer issues). 15 years seems like a long time to me in the pharma world. 🙁

LDN – I anticipate getting back on that again soon! My Maine doctor told me that it increases immune function at night while I sleep, increases endorphins etc. For anyone reading this who hasn’t heard of LDN, I recommend the book, “Up a Creek with a Paddle” (Mary Ann Boyle Bradley) this was recommended to me by my Maine doc and it is very good/informative. I have been recommending LDN to people — especially those with Parkinsons and MS which is what that book focuses on.

Why do you think I am anemic? Coincidentally, I am also having my annual physical next week and I can see if he can add that test to the queue of blood work.

ALL: ANY OTHER IDEAS FOR BLOOD WORK/TESTS I SHOULD HAVE EITHER THE RHEUMATOLOGIST OR PRIMARY PHYSICIAN ORDER?

Maz, Thanks for detailed response, I will find time this week (tomorrow?) to go through it in more detail. The blood tests you recommended will be helpful w my conversations with the Rheumatologist and Primary Care Doctor (annual physical) this week. I forgot to mention in my time line that in early 2019, I was doing the minocycline M W F and was doing Tindamax (500mg) 2x a day on Saturday and Sundays. I wanted to try Tindamax again as I had interesting results with it in 2014 as mentioned in my timeline but I didn’t have any changes with it and stopped taking it after around 5 months.

One question for you, what level is your pH / alkaline? Is this something you have focused on? I have been increasing my alkaline diet and also taking the supplements more over the past 4 months or so and my husband is convinced I have less basal cells on my back (they are very small, raised bumps) AND I have been feeling itchy on my back over the past 2 months. I am wondering if the increased alkaline is killing off skin cancer cells… I am very excited if this is the case. Bad things that live in us do not like an alkaline environment; they flourish in acidic environments and low oxygen environments (I read somewhere that this is why the joints can hurt more in an airplane). In the Sodium Bicarbonate book I recommended (Dr Mark Sircus), he says on page 149, “… oxygen levels in the body are directly related to pH levels. Increasing pH from 4 to 6 increases oxygen to the cells by 100 times and raising pH from 4 to 7 increases oxygen levels by 1,000 times.” I went from roughly 4.5 to 7.0 (and a little higher on some days) so my cell oxygen should be much higher these days…. this could also be why my joint pain is almost non-existent and why the skin cancer could be “dying off” (if it indeed is…). It takes a while to increase the pH; I started working on it about 2 years ago (when it was super low, around 4.5/5.0). I think the pH angle is exciting… I have another book where the author clearly states that if you have high alkaline, you won’t have RA.

Has alkaline been a focus in this forum? Anyone have what would be considered high alkaline and still struggling with RA?

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Linda L, Thanks for reaching out! My skin cancer is very steady (regardless of arthritis pain/swelling) – it doesn’t seem to pop up as often when my D3 levels are higher, when my D3 levels are lower, I seem to have more of a problem with it.

It’s possible the RA and the skin cancer are improving because my alkaline has been improving/increasing. And it’s possible that the minocin is also contributing to my arthritis pain lessening — and I am also keeping up with the magnet treatments so that could also be helping. I am trying multiple things now so it will be difficult to pinpoint positive progress to one specific treatment.