Am I someone AP just doesn’t work for?

[DiamondTNT]

I have a wonderful Naturopath in Montana that’s been working with me on AP for the past 4 years. It’s very difficult to find a doc that will work with someone that travels all the time and I absolutely love him; (we live full-time in a motorhome and have been enjoying travelling around the USA these past 5+years). I’ll try to answer all the questions.

Yes, I am very well informed about Hydromorphone and understand all it’s side effects. All of the other heavy duty pain relievers messed with my head to the point that I couldn’t function. Today I had a major episode with stomach pain, just guessing it’s too many years on NSAIDs so just a few hours ago I had decided to get off of them all for a while.

I have a new AP Doc in Florida (from this forum list) that I will see for the first time this Thursday to get all new tests and overall checked out. Hoping for some good news.

Mary, I’ve done anti-parasite cleanse twice and my Montana doc can’t find any ‘normal’ parasites.

Maz, detoxing and getting off all meds for a while sounds like a very good idea! I will start right now.

Jill, I will check out more about dental – and, yes, I have past fillings & extractions – & RA affecting my jaws and moving my teeth.

I’m pretty good on my diet, eating as natural as I can, finding naturally raised fruits, veggies, meats, etc. I was raised by a ‘health nut’ back in the ’50s & ’60s – Mom’s 98 yrs old tomorrow and still doing great. I grew up on Apple Cider Vinegar & Honey tea, “Scott’s Emulsion”, NO sodas, cakes, cookies, white bread, etc – lots of fresh fruits & veggies. I could do better on cutting out the little sugar I do eat. Montana doc did a lot of food sensitivity testing my first year with him and nothing really showed up other than very minor reaction to asparagus, mushrooms, bananas.

Depression has been a ‘side’ of me for a very long time but, rarely raised it’s ugly head; now it’s with me way too often and that could be the excess of meds. (It also could be due to the man I married 6.5 yrs ago – big mistake!)

I’m considering doing antibiotics by IV only for a year or so. Give my poor, over-medicated stomach a break. Possibly even pain control by injection also. I’ll have to see what the new doc thinks.

Thank you so very much to all who have answered here!!! I will try harder and am looking forward to Thursday and hopefully finding good answers from the new doc. I am hanging on… again.

[Valsmum]

Ellie,

I eat a lot of of fruits and veggies. I eat eggs and fruit for breakfast, or make a fruit smoothie, I still drink Starbucks coffee, that is part of my 10% wiggle room with the 90/10 diet. For lunch and dinner I eat salad with hard boiled eggs , dressing from Trader Joes, they do not use GMOs in their TJ products. I also eat chicken ,turkey, salmon and tuna. I don’t do well with beef. I like cooked veggies like mushrooms, zucchini, squash, carrots cooked with avocado oil . It hurts so much to eat pizza and starchy/grains that it is not even tempting anymore. I eat some candy too, but I stay away from baked goods. So mostly my diet consists of a lot of fruits and veggies with seeds, and sometimes beans, but like I said the starchy stuff hurts my back. Dairy made my knees swell for the longest time, but now my knees are fine, I am SOOO grateful. It was so painful with swollen knees, it affected everything I did, I could not go trick or treating for more than 20 minutes before I had to go home and rest, it was so hard for me.

One tip I read about is to make 5-10 recipes that you really enjoy and keep those ingredients on hand. My friend has AS, arthritis of the spine and she has wonderful recipes that are mostly raw, so I go there when I feel like something new.
her recipes are at: http://www.bettyrawker.com , she used diet to heal herself of AS, and I have tried her recipes they are great. I am busy with my kids so I don’t have a lot of free time to try new recipes, so I like going to check out her recipes,because they are really tasty and original and safe for diets like mine. Most any raw-food type recipe I am good and wont cause me too much trouble.
Take care!

[DiamondTNT]

Thank you, again, to ALL here and especially Maz. No meds since I last posted and even though it’s only a couple of days my stomach feels so much better and – at least so far – the RA symptoms are not toooo bad. I’m only taking vitamins / minerals and a small dose of hydromorphone as needed to get by; I’m trying to not take any until I can’t take the pain, then only taking 1/4 of a pill under my tongue and waiting about an hour before I decide if I need to take another 1/4. Plus, cherry juice, vinegar/honey tea. Working on a positive attitude for tomorrow at the new docs. (Side benefit appears to be the constipation of these past few months might be over with.)

5 years on AP, learned to do my own IVs w/ husbands help, trying so hard to do this right, as naturally as possible (for me) with diet and my naturopath’s supplements, manufacturer specific with my meds from an absolutely wonderful compounding pharmacy that works with me and my doc better than any I could have imagined. I’ve been so lucky to have found them!

Now though, I can’t help considering the biologics, as much as I really, really don’t want to. I know that if there is something else wrong with me that I won’t be able to take them but, I can’t help having it go through my mind, often, that I would dearly love to have some time without the constant pain… some quality of life for a while (as it kills me faster than what I’m doing now?). The very last thing I want to do is ruin my already struggling immune system – but, no or little pain for a while sure is very tempting. I will try harder to get that OUT of my mind.

[PhilC]

Hi Di,
@DiamondTNT wrote:

No way I want to take methotrexate or any of the biologics but, I am starting to feel desperate.

There are other DMARDs that you could take, such as hydroxychloroquine (Plaquenil) and sulfasalazine.

Since you also have Sj

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[DiamondTNT]

Thank you, Phil.

I have prednisone (10 Mg) and my Montana doc said (a couple weeks ago) to start taking it again starting as if a ‘dosepak’; 6 pills day 1, 5 pills day 2, on down daily til I reach 10 mg daily for a while til I check with the new doc. I’ll see about switching to Cortisol and/or lower dose still. I was put on 10 mg daily

I also have a supply of hydroxychloroquine and I’ll check w/ new doc about taking that again. Every time I have taken it I have noticed eye problems within about 6 weeks so I’ve pretty much stayed away from it lately.

No insurance anymore, way toooo expensive for us; we’ve been spending A LOT LESS for our medical appts, tests & meds in cash than the cost of insurance alone. I have used inhousepharmacy.biz for celebrex and celecobix and might do that again, depending on the new doc.

I blew it big time and had the wrong date for my new doc appt, so now I go next Tuesday instead of yesterday.

Wish I could figure out any food sensitivities. Did LOTS of testing on that and almost nothing showed up – what did was extremely low sensitivity. ???

Getting off everything except prednisone, vitamins/minerals has me feeling better within 48 hrs – except the RA pains sometimes are still very harsh. Digestive system, including bladder, is MUCH better right now. Makes me wonder again about mino induced lupus or something similar. Anyway, feeling better without the drugs right now and no matter what that’s good. (Thank you again, Maz!!!)

[PhilC]

Hi Di,
@DiamondTNT wrote:

I also have a supply of hydroxychloroquine and I’ll check w/ new doc about taking that again. Every time I have taken it I have noticed eye problems within about 6 weeks so I’ve pretty much stayed away from it lately.

In that case, it seems like it may not be worth the risk to resume taking hydroxychloroquine.

@DiamondTNT wrote:

Wish I could figure out any food sensitivities. Did LOTS of testing on that and almost nothing showed up – what did was extremely low sensitivity. ???

What foods did the tests show that you are sensitive to (even if only a little)?

@DiamondTNT wrote:

Getting off everything except prednisone, vitamins/minerals has me feeling better within 48 hrs – except the RA pains sometimes are still very harsh. Digestive system, including bladder, is MUCH better right now. Makes me wonder again about mino induced lupus or something similar.

It would be prudent to explore that possibility with your doctor.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[DiamondTNT]

WOW! Dr R in FL was taught about AP by his Dr father who’s been using it since the 1960s!!! I have to wait til Dec 8 & see a GYN to find out about the growth. Starting with Biaxin 500 mg twice a day two days a week, attend his class on diet next Monday, his class on Chelation in a couple of weeks. Work out a schedule for Clindy IVs. Now I have a Fantastic AP Doc in both the South wher we now plan on spending every winter and another Fantastic doc North for the summer. Feeling very lucky and blessed. Getting back my will.

[kater]

Fantastic Diamond! go Woman!!
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[DiamondTNT]

Biaxin gives me herx. Started with 500 mg twice a day, 2 days a week. Now once a day 2 days a week. Still herxing but, feel pretty good after around 40 hrs. Finally found a GYN I think I will like so tomorrow I hope to finally find out something about the growth.

Working on a new diet, easing into it this month so hopefully starting in January I’ll be gluten free.
Anybody had chelation?

[cavalier]

Yes I’ve had about 9 IV chelations and then have used oral & suppository chelators for years now. Pectrasol C is great as is nano zeolite I get the latter from pure formulas.

Jill

[sunny22]

Hi Diamond, it sounds like you have had such a rough time. But you also sound like you are a fighter. Maz and the others have given you good advice. When I read your post, it reminded me of myself. I had been working w two ap docs for a year, I was no better, in fact worse. Iwas extremely disappointed as my other friends who suffered w RA and Sd had great success with AP. I also refused the cancer drugs. I am so thankful to Maz and the Roadback. Thanks to Maz, I had myself checked for drug induced Lupus ( from the mino and doxy). I had it for sure. Then I realized that it was very likely that I had lyme and coinfections. Once my Igenix test (i highly recommend you test forlyme and cos thru them or another reliable lab, not connected to the CDC) came back, it was clear that the Ap was not working because I had chronic lyme and a couple of coinfections. The undiagnosed lyme &cos that I had been infected with for years had morphed into SD, RA, and a host of other issues. There are so many endemic areas around the US. It is very possible to not even realize youve been bitten. You dont always get a bullseye rash after a bite.

I wish you the very best heath and hope you find answers.
Sunny

[lynnie_sydney]

Hi Sunny – nice to ‘see’ you. You don’t have any signature info so difficult to know what’s happening with you these days. How are you travelling now you’ve discovered DILE and also chronic Lyme? What are you taking abx wise and how are you doing?

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[sunny22]

Hi lynnie, although for some weird reason i was having trouble signing in this summer, it was just as well. I was so ill. Im glad to be back on now! But now i have to figure out how to put my profile/ meds on the bottom of my posts. I will work on this in the am. Is there a place to go to get directions on how to add that? I had wanted to do it last year but i was so saturated with everything, that went to the wayside. But i knw it is very important. So if you can send me to the directions that would be great. I hope you are well, i am trying to catch up with you all! Got to go to sleep 😉 Sunny

[m.]

Hi Sunny,

At the top of this page you’ll see User Control Panel.

Click on that, then click on the tab Profile.

Then Edit Signature.

[Amle]

DiamondTNT,
I am wondering how you are now? Were you able to get off the hydro-morphine? I have become really chemical sensitive and when I have had to have a surgery they keep trying to give me some version an opiate. Luckily the anesthesiologist I worked with the last time recognized it right away. My arms had a rash and were swollen and hot. After only taking it for one day, I felt depressed as my body tried to get it out of my system. I think Maz was right on target– that one prescription could be causing more issues than it is helping.
Hope you are feeling better.
Amy

[Author]

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