RHEUMATOID NODULES

[Nason]

I HAVE A COUPLE OF QUESTIONS ON RHEUMATOID NODULES. SORRY IF THIS TOPIC HAS BEEN COVERED BUT I DID NOT FIND ANYTHING. I HAVE RA NODULES ON HANDS AND FEET. I CAN LIVE WITH THE ONES ON MY HANDS, BUT THE NODULES ON THE BOTTOM OF MY FEET ARE QUITE PAINFUL WHEN I WALK. I WANT TO KNOW IF: 1. ANYONE HAD SUCCESSFUL SURGERY ON THE BOTTOM OF THEIR FEET TO HAVE THESE NODULES REMOVED? BY SUCCESSFUL I MEAN NO NERVE DAMAGE, SCAR TISSUE ETC THAT HAS CAUSED MORE PROBLEMS THAN THE NODULES THEMSELVES. 2. ANYONE KNOW OF A NON SURGICAL WAY TO REMOVE OR DISOLVE THESE NODULES? 3. ANYONE HAD THESE NODULES BECOME INFECTED AFTER THEY HAVE BEEN THERE FOR A LONG TIME? ANY FINALLY, 4. WILL A LOT OF WALKING AND OTHER EXERCISE MAKE THEM WORSE. I HAVE BEEN ON AP FOR 10 YEARS NOW AND RECENTLY HAD X-RAYS ON HANDS AND FEET AND WAS TOLD THAT MY JOINTS WERE IN REMARKABLE CONDITION FOR SOMEONE WHO HAS HAD RA FOR 15 YEARS. NO DAMAGE AT ALL. NOW IF I CAN JUST GET RID OF THESE DARN NODULES!!! I HAVE HEARD SOMETHING ABOUT PAINTING IODINE ON THEM OR SOAKING IN CASTER OIL. ANYONE KNOW ANYTHING OR CAN POINT ME IN THE RIGHT DIRECTION? THANKS. ELIZABETH

[Krys]

Nason wrote:

I CAN LIVE WITH THE ONES ON MY HANDS, BUT THE NODULES ON THE BOTTOM OF MY FEET ARE QUITE PAINFUL WHEN I WALK…..I HAVE BEEN ON AP FOR 10 YEARS NOW /quote]

Hi Elizabeth,
I’m so sorry you have this problem.
I started developing nodules early on and they were popping up quite rapidly in the beginning. Most disappeared with herbal antimicrobials (I was taking massive amounts of all possible antimicrobial herbs taken at the same time for 8 months while searching for an AP doc). The rest, except one, disappeared on AP.
I have grown some additional nodules on my muscles and tendons while on AP, but those are clearly Lyme related. But I have just (as of this moment) checked, and only one on my thigh is still there and one old one on my thumb. The ones on my neck and palm tendons disappeared within last 2 months.
Are you on the same AP protocol for the last 10 years? What are you taking? Maybe it is time to tweak the protocol a bit?
Have you tested for Lyme by IGeneX?
If new symptoms are appearing while on AP for that long, maybe something untreated came up to the surface? Many people treating RA, SD discovered they had Lyme and once they adjust their protocol to Lyme treatment (it IS more intense than RA protocol) they start seeing improvements and some go into remission!!!
How long have you had nodules, and when did the ones on your feet appear?

Re.: iodine. I think it may help, especially if you also change or add an additional antibiotic. But if you use iodine, stick to Lugol’s. I bought some slightly cheaper one with no color, and it is practically worthless for any skin manifestations.
I don’t really know if detox helps with nodules. It seems to help with all kinds of unwanted manifestations and will NOT hurt. Are you doing any? My body uses skin for dumping out toxins all the time. If I do not detox regularly, I experience all kinds of unwanted symptoms: skin, neurological, etc. I do not know if it applies to nodules, but detoxification will not make them worse, chances are it will help.

It will help with generating more responses if you add signature line to your post. Click on “User Control Panel” above, then on “Profile”, then on “Edit signature”. If you put what you are on, it will be easier for people to relate and respond to your post.
Warm wishes, Krys

[Nason]

HI KRYS,

THANK YOU SO MUCH FOR YOUR REPLY. 10 YEARS AGO WHEN I FOUND THIS SIGHT, IT WAS VERY DIFFERENT TO USE AND I AM NOT UP TO SPEED WITH THE SIGNATURE LINE ETC. I WILL ALSO ADD THAT THIS SIGHT WAS SO INSTRUMENTAL IN MY EDUCATION ON RA. WITHOUT IT, I WOULD HATE TO THNK WHERE I WOULD BE TODAY. WHEN I FIRST LEARNED OF AP PROTOCAL I STARTED ON MINOCIN, 100MG 2X PER DAY. AFTER 6 MONTHS ALL MY SYMPTOMS WERE 90% REDUCED, INCLUDING THE NODULES. I WAS ON THIS PROTOCAL FOR 6 YEARS WHEN I DEVELOPED A REACTION TO THE MINOCIN ( DARK SPOTS ON FACE AND TEETH, WHICH I LEARNED IS NOR COMMON BUT DOES HAPPEN. IT WAS THEN THAT I REDUCED THE DOSE TO 50MG 3 TIMES PER WEEK. THIS SEEMS TO KEEP THE RA IN CHECK, BUT THE NODULES CAME BACK ABOUT 4 YEARS AGO. THE ONLY CHANGE I MADE WAS FROM MINOCIN TO MINOCYCLINE WHEN I CHANGED TO 3 TIMES PER WEEK. I DO NOT KNOW IF DOXY WOULD MAKE THAT MUCH OF A DIFFERENCE I THE NODULES. MY AP DOCTOR RETIRED LAST YEAR, SO I AM JUST SEEING MY REGULAR DOC FOR PRESCRIPTIONS.

YES I HAVE BEEN TESTED BY IGENEX FOR LYME TWO DIFFERENT TIMES AND WAS NEGATIVE. I HAVE A NATURALPATH FOR A DOCTOR SO I AM VERY INTERESTED IN YOUR RESPONSE ON HERBAL ANTIMICROBIALS. WHAT DID YOU USE? HOW DID YOU DETOX? DID THE LUGOL’S WORK? OF COURSE I WILL USE MY DOCTOR’S GUIDANCE IN REFERENCE TO THE HERBAL ANTIMICROBIALS AND DETOX BUT IF YOUR NODULES WENT AWAY I WOULD LOVE TO TRY YOUR METHOD. I AM SCHEDULED TO SEE A ORTHOPEDIC SURGEON NEXT TUESDAY. I AM RELUCTANT TO HAVE SURGURY. I WOULD LOVE TO FIND ANOTHER WAY THAT WOULD WORK. AGAIN THANK YOU VERY MUCH FOR YOUR INFOMATION, AND IF YOU COULD GET BACK TO ME I WOULD GRETLY APPRECIATE IT. ELIZABETH

[lynnie_sydney]

AM NOT UP TO SPEED WITH THE SIGNATURE LINE ETC

Elizabeth – click on User Control Panel above left. Then click on the tab that says ‘profile’. The in the options that come up, the 2nd one down says ‘edit signature’. Click on that and then you can go in and put information on what disease you are dealing with, when diagnosed, what you are taking in terms of meds, when you started etc. This will come up every time you post and will save you having to repeat everything every time. Take a look at what others have done with their signature o maybe get some ideas. Yes technology has certainly changed in the last 10 years! Hope this info helps.

P.S. it will be much easier for people to read information in your posts (it’s the way the eye works) if you dont use all capital letters.

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)

[lynnie_sydney]

Elizabeth – You may also be interested to read the update posted by Blondie283 (Carol). She states that her nodules have gone.

viewtopic.php?f=1&t=7773

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)

[Krys]

Hi Elizabeth,
I feel embarrassed posting the below. It’s too much of everything.
Maybe the best advice now would be recommendation re.: how to tweak your AP protocol? Switching from mino to minocycline while lowering the dosage quite drastically, and developing nodules soon afterwards, suggests the change in the protocol was not the best for you! I hope Maz or somebody really knowledgeable about abx will see your new info and respond.
@lynnie_sydney wrote:

P.S. it will be much easier for people to read information in your posts (it’s the way the eye works) if you dont use all capital letters.

I agree with Lynnie. I myself have problems processing info within messages written with capital letters. I read them and my brain just does not retain anything I’ve read! I have to read again and again.

I wonder: if you keep developing new nodules, will the surgery benefit for long?

I’m hesitating to list everything I was taking because no herbalist / naturopathic doc would agree to the massive amount of anti-microbial and anti-inflammatory herbs (most taken at full dosage) that I self-prescribed! I kept adding on and on….

I used 2 books while choosing herbal approach:
1. “Herbal Remedies: A Quick and Easy Guide to Common Disorders and Their Herbal Remedies” by Asa Hershoff, N.D. and Andrea Rotelli, N.D.
It’s available on Amazon and has a really generous amount of pages for free viewing. If you click on “Click to Look Inside” and then within the search window write “Arthritis” (result #8), the 2 pages on the herbs will show up.
I also used (first comparing which ones will be the broadest and most useful for me) some additional herbs from the pages on Inflammation, Cancer, Candida, Detoxification, Fibromyalgia, Infection, Inflammation, Parasites, Stomach Conditions.
I ended up taking (not all at the same time, tough it was often most of them daily, some 3x day 3 self filled capsules, some 3×1, some 2×1, some 2×2, some 1×1 a day, some as needed, some only for detox, some while on parasite cleanse, some mixed together and taken as tea, some rotated, some every single day though not necessarily always at mega dose):
Curcumin, Bromelain, Quercetin, Papain, Black Cohosh, Boswellia, Cayenne, Devil’s Claw, Feverfew, Ginger, Licorice, Meadowsweet, Yucca, Guggul resin, odorless garlic capsules, Black Cumin oil and seeds, pomegranate seeds, Calendine + nettle + red clover + raspberry leaf + dandelion (+ bitter orange peel added for digestion and aroma, sometimes Chamomile and/or St.John’s Wort) tea, Maitake, Shitake, Reishi, Cordyceps, Triphala, Olive leaf, Pau D’Arco, Oregon Grape, Goldenseal, Siberian Ginseng, Gingko, Gotu Kola, Flaxseed and Flax oil, Kelp, Slippery Elm, Poke Root, Red Root, Cinnamon + Cloves + Cardamom + Nutmeg added to gluten-free cakes, apples, vegetable juices, Black Walnut, rose hips + acerola added to vit. C.
As you see, the list is embarrassingly long! 😳

2. “Rheumatoid Arthritis: The Infection Connection. Targeting and Treating the Cause of Chronic Disease” by Katherine M. Poelmann, Ph.D. was my second “bible”. It describes every useful healing mode and treatment, including the herbs and diet.

I don’t know where I’ve put my daily notes on what I was taking, what symptoms were showing up and what had just disappeared. My nodules started disappearing within a couple of months of showing up. It must have been the combination of herbs, diet and detox at the same time.

Did you do any diet and any detox during those 10 years?
Did you develop any symptoms of Candida?

You have so little time before the surgery…..
I don’t know what exactly causes nodules. Would take some time to research. But if you did no detox, no dietary changes, no anti-inflammatories, no anti-oxidants….and time is very limited, maybe doing intense program would help? By intense, I mean adding some broad spectrum anti-microbial (abx did help you before, so would your doc be willing to add a broad spectrum abx for a while to see if it helps? Like Azithromycin or Biaxin?). I’m basically parroting advice I often read on RBF. I wish Maz would respond, she is invaluable with this type of advice!
Broad spectrum antimicrobial herbs like Goldenseal, Pau D’Arco, Cat’s Claw, + more.. would have to be taken at full dosage and probably not singly but combined with another 1 or 2. And they do take longer to show effect.
Are your nodules at joint or tendons? If at tendons, Teasel root could be very helpful. The thing is herbs work much slower than pharmaceutical abx, and your time is limited.

Has your doctor checked for any viral and or bacterial infections that have not been addressed so far?
Some naturopathic docs are very good at muscle testing, though on its own it may not be very reliable. The pre-programmed computerized machines are doing a better job at that, yet still not totally reliable. The combination of both + symptoms and detailed history may be better than extensive and expensive blood testing for everything from scratch!

If it had been me, I would give other methods than surgery a chance. Especially that if the root reason is not addressed, new nodules may still be showing up.
I am not an expert on anything, so I’m glad you will run everything by your doc! 🙂 I would add another abx (if there was more time, I might use a combination of herbal abx instead), I would start anti-inflammatory diet (not just gluten-free, I would eliminate for at least 6 weeks all other possible food intolerances: dairy, eggs, nightshades, citrus, strawberries, coffee, tea, corn, soy, bananas, maybe I missed something?).
I would do extensive detox employing many detox methods in addition to soaking hands and feet in drawing solutions. After the soaks (and I would use those at least 3 x a day) I would use Lugol’s iodine, then some drawing pastes (herbal, baking soda, maybe you can find some by googling? I think I read about clay pastes that can draw even poisonous stings/bites out. They do the same thing with toxins). I don’t remember where I read about those, if it comes to my mind, I’ll post again.

While on herbal protocol, I took peroxide + epsom salts baths, I soaked my hands and feet in warm water with hydrogen peroxide + epsom salts, or: 1 TBSP ground mustard seeds + 1tsp of Cayenne pepper (good brain detox + enhanced circulation and general detox), baking soda + sea salt in a tub of warm water, rubbed coconut oil / Bag Balm / propolis tincture / calendula oil /vit.D and E into skin. Maybe rubbing teasel root tincture would help? That’s a wild guess…I’ll check my books, but it may take a few days to repost. Rubbing and massaging can help. Maybe applying warmth/heat? If not whole FIR sauna, Amazon sells FIR wands (Infrared Light Heat Lamp Hand Help Massager).
I would use massive doses of vit. C (ascorbic acid powder + magnesium powder + a bit of baking soda to neutralize acidity).
Blondie’s post (the link Lynnie supplied) is very inspiring and raw vegetable juicing is such a powerful detox, it is bound to help and speed things up, especially if you incorporate diet that eliminates food allergens.
If you have low body temperature, as many of us do, it would help if you add warming spices (cinnamon, ginger, cardamom, cloves — all in small amount as they can illicit herx!) as raw vegetables are cooling by nature and with low body temp. one can feel worse instead of better. Juices are on the whole easy to digest unless the pancreas was affected by years of daily medication. Mine has! Then using digestive enzymes prior to food intake or even with juice (like Pancreatin) should help.

Iodine: I did not use iodine when my nodules disappeared. I started using it last spring on various skin outgrowths / changes and I can see iodine is helping!

I’m sorry if it sounds overwhelming. It’s easy for me to mention all those things: I do have all of them at home.
Hoping some of the above help,
Krys

[lynnie_sydney]

I agree with Lynnie. I myself have problems processing info within messages written with capital letters. I read them and my brain just does not retain anything I’ve read! I have to read again and again

It’s not just you Krys, it’s everyone. The eyes move across a page in wavy rather than smooth lines – so recognize words better when they are written in mixed case (up and down).

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)

[Nason]

Krys, Thank you so very much for your wealth of information. I am going to postpone the orthopedic surgeon appt until I can have a chance to try some of the methods you have suggested. I am definitely going to speak to my doctor about adding another abx. in the meantime I am going to try the soaks, pastes, and iodine as well as digging out my juicer and making a 6 week commitment to detoxing. You have really inspired me with the amount of dedication it must have took you to get well.

I have the book “The Infection Connection” and I will also re-read that. I guess when I felt better for the 4 years I was on the minocin, I let slip a lot of my good eating habits (easy to do when you feel fine). Reading your post made me realize how important it is to stick to the anti-inflamation diet. Thank you again for taking the time to be so thorough. I will appreciate any other info you can find, or remember. Sorry for the capital letter writing. My fingers are stiff because of the nodules and it was easier to type in caps. Elizabeth

[Krys]

Hi Elizabeth,
You are very welcome. I asked my TCM doc yesterday about nodules and if acupuncture would help. He said that it depends whether they are totally calcified or not. If totally calcified, which I presume, would be evident on an X-ray, TCM will NOT help. Surgery is the best option. If partially calcified, it may help. If not yet calcified, it will definitely help. So I said that my nodules were very hard and felt like a bone, and yet they disappeared. He said that that they were not calcified that’s why they disappeared so fast. Time is not necessarily a factor, though obviously like with everything, it is always better to start treating any problem early. I think you may want to have them checked for that aspect!

There are many lineages of healing within TCM. Each one stems from some past enlightened master who understood and passed on how to work with energy obstructions, deficits, interferences, etc. My TCM doc represents a lineage that according to my other TCM friends (docs and teachers of Traditional Chinese Medicine) is really the best one for treating rheumatic diseases, or maybe it was said the one for my particular problem? I’m not sure now. If you want to consult with a practitioner from within that particular lineage, I can ask him and he will provide the list of TCM docs in your region. If not, maybe just go for a consultation with any TCM practitioner for assessment of the nodules?
I did not do any acupuncture when my first nodules on my hands appeared. The last 3 on a tendon under the finger joint (very painful) and 2 on the tendons on my neck, disappeared within the time frame I also underwent TSM treatments.
It’s just an idea.

I checked online how else you help yourself and found some sites with more ideas. Maybe you’ll find something additional of interest.

1. This one is a nice reflexology site with wonderfully clear instructions on how to do it and clear charts of points on face, hands and feet. There are some points on the ears that maybe I missed or they did not show. Each of those sites, including the ears, represent the whole human body and all the organs and body parts and by pressing (or using other techniques) one influences the body and body systems.
http://www.how-to-do-reflexology.com/footreflexology.html

2. Google: “Reflexology for RA nodules” I had no time to check any sites, but maybe specific info for nodules will show up.
If your hands are very tender, it will be difficult to press reflex points on your own. You can use a tool, like nice smooth pointed crystal or smooth tipped rock. The sharp pointed ones may be very efficient in capable hands, but are bound to be immensely painful and will discourage you from doing anything.

3. Old Folk-Home Remedies to Relieve Arthritis and Rheumatism:
http://www.pioneerthinking.com/arthritis.html Check all 3 pages. A lot of those ideas make sense.

4. You can check on http://www.earthclinic.com Write “foot nodules” in the search window and few pages of posts will show up, usually highly optimistic. Castor oil packs, iodine, ACV, borax + more is mentioned. LOTS of reading! Somehow there were less pages about nodules when I wrote “RA nodules”.

5.http://herbs.lovetoknow.com/Homeopathic_Remedy_for_Arthritis
Homeopathic remedies Calcarea Carbonica and Calcarea fluorica are mentioned with respect to nodules.
There are some restrictions (no coffee, no certain toothpastes, + some more) while taking homeopathic medicine. You’ll have to do more reading if you decide to pursue this avenue.

6. http://www.doctoryourself.com when you write in the search window “nodules” you’ll get a few articles, among others Dr. Kaufman’s article “The Common Form of Joint Dysfunction” on Niacinamide and RA: http://www.doctoryourself.com/kaufman10.html

Especially noticeable in patients with rheumatoid arthritis who are receiving adequate niacinamide therapy is improvement in appetite, with concomitant gain in weight, recovery from many nervous and mental symptoms, gradual disappearance of muscly atrophy, and improvement in muscular strength; usually, also, the anemia is corrected, the sedimentation rate index decreases to the normal range, and subcutaneous nodules tend to disappear.

A Friend has posted a lot on RBF on Dr. Kaufman and also on benefits of niacinamide. You can find the posts by using the search window above the threads in General Discussion.
You can find the Niacinamide protocol on DoctorYourself.

@Nason wrote:

You have really inspired me with the amount of dedication it must have took you to get well.

Elizabeth, I’m sorry if I gave you a wrong impression. I am not recovered yet. Though many, many problems are gone, including the nodules, other problems keep showing up. As long as I keep my diet, take my abx, supps, TCM herbs, do some detox, I’m doing really well. But like many, once I do well, I stop doing the basics (diet is a big one for me) and I slide down. Also my body is not tolerating well such a big amount of abx. Whenever I have to take a break, something new pops up. I view that as a very wavy, full of detours, road to wellness. We’ll get there yet!!! 😛
Warm wishes, Krys

Did I mention circulation, checking for thick blood, normalizing low body temperature if any?

[Author]

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