swollen knees

[ablegirl]

Please can somebody explain to me again rationale for ap therapy. I have a problem with my knees they are and have been consistently swollen. When i followed a so, so restrictive diet I did manage to get the swelling down not completely but definitely improved. I was on such a restrictive diet that it was very hard to maintain hence a slide. I do have osteoarthritic changes to both knees having had such swollen knees for so long. I have just started back on Minocin had to come off due to supply issues . I was off for over a year. Oh dear, my knees feel like someone has taken a hammer(no make that a mallet) to them they are so swollen and sore. I cannot straighten up or walk and sorry to say this having to pee in a bucket as I cannot get to the toilet. What a state of affairs. I have taken 100 mg M W F this last week. I did try to get back on Minocin a few weeks ago but again the Herx made me retreat. It is so hard to deliberately make yourself worse when one is not in good shape to start. Apart from my knees I feel ok, stiff of course but not in that burning hell that I once was in a few years ago. I have joint damage to wrist, fingers, shoulders from an acute flare but now very little visible swelling except for my blasted knees. I am just about to watch strictly come dancing on the telly definitely guaranteed to make me cry when I cannot even stand up. Shall I persevere. It definitely helped me first time round but I seem to be herxing worse this time trying it for a second time. Not sure of my blood markers at the moment have put off having them tested as the stress alone from having high readings is enough to cause a flare through the stress and worry alone. Of course if I seek medical help I am presented with Steroids, Methotrexate etc. Here in UK you cannot have a biologic until you have tried and failed on a DMARD (not that I want a Biologic) but when you are in a state with little quality of life!!!

Any thoughts, kind words would be appreciated.

[lynnie_sydney]

ablegirl – sorry you are having such a rough time.

The biggest difference for me in terms of my knees was when I came off gluten. If that is something you have tried/are willing to try, then you need to come off ALL gluten and be extremely strict – a little is no good. Even instant coffee uses wheat in the processing, so you’ll need to start drinking filtered or other non-instant types. You could also try a 3 day clear vegetable juice fast, that has often given people tremendous relief of pain and inflammation.

Another thing that came up for me with what you describe – swollen knees and, it seems, involvement of single larger joints. That is NOT typical of RA. It is more typical of Palindromic Arthritis and Lyme Disease. Have you ever been tested?

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)

[Valsmum]

Sorry you are going through this, it hurts 🙁
I have had 30ccs of fluid aspirated from my knees at least ten times … YUCK, I know swollen knees. The biggest help was juicing fruits and veggies for a few days and staying away from grains, dairy and nightshades. I was able to get my sed rate from the 50’s to normal range my . Unfortunately, the diet is not a lot of fun, however a friend of mine has a lot of yummy recipes that have all raw/whole food ingredients safe for my kind of diet. She even has some sweets, here is the link:
http://www.bettyrawker.com

In the past I have not been able to make my knees straight either, it is very hard, I am sorry you have to go through all this pain. See if the juice fast helps , if it does stick with it. Take care Dear.

[Krys]

I’m so sorry that you are going through so much pain and discomfort!

I second Lynnie and Sheri. For me, gluten and dairy always cause inflammation and pain, including brain inflammation and red and very dry eyes.
A few days of just vegetables fast (it will take longer to see full effect of getting completely gluten-free), with green veggie juices only + detox (as heavy duty as I could manage) always helped. Systemic enzymes taken 2 hours away from food speeded up feeling better.
Sometimes coffee has to go, too.
http://www.thehealthyhomeeconomist.com/gluten-issues-or-celiac-dont-drink-coffee/
“10% of coffee is a protein that cross reacts with gluten antibodies.
This means that if you are gluten sensitive or celiac and are avoiding gluten containing grains or perhaps have even gone completely grain free, if you still drink coffee, there is a strong likelihood that the protein in the coffee is triggering the very same gluten related health problems you are trying to avoid.”

The reason it is so hard to go gluten-, sugar-, dairy- and coffee FREE is because they are very addictive. We are all addicts! Just look how one single dietary mistake most usually is followed by a whole cascade of indulgence, even when we know there will be hell to pay.
If you focus on what you can eat, make a whole list of “good” food items and have supplies handy, it will be easier.

I hope and pray that you feel better soon,
Krys

[ablegirl]

Dear Lynnie, Kyrs and Vals Mum, Thank-you all for your replies.

Its so nice to hear from other people who understand what you are going through, a tonic in itself. I know the importance of diet from experience but when you are surrounded by “normal” people” who can eat anything they want its hard for them to understand how food can effect me so much and just keep telling me I need to be on drugs. So hearing from you and knowing what I know it definitely reassures me to get back on a juicing diet. (not easy when your knees are so swollen and all you want to do is not move). I have been back on Minocin for a week after a years break so there is definitely some flare/herx involved from that together with a slip in dietary measures, it sure doesn’t take much does it! I did manage to get my sed rate down to 5 from 30 when I was being very strict over a 2 month period, so I know diet plays a big part but to consistently be so rigid is hard. Even when the swelling went down in my knees I wasn’t walking great as I have so much muscle wastage from being in such a state for so long. So I have quite a lot of work to do. I need to control the inflammation and swelling then find a way of rebuilding my quadriceps, having no muscle isn’t helping too.

Thanks to you all you have just reenforced what I know I must do. I have noticed that the more dramatic I am with my diet when I do slip it seems to react so badly even more than before i even started diet. i suppose that says I musn’t slip (lol).

Lots of love and thank- you again for kind words and reassurance.

[lynnie_sydney]

The good thing is you are in the UK. There are full aisles of gluten free bread and rolls in the supermarkets that are extremely good in terms of softness and taste (I know, I was back there last year). Still not so easy to find in the U.S. The exclusion diet gets easier over time. I eat out almost anywhere these days (just take a couple of slices of GF bread for smaller cafes that are not ‘with the program’ yet and get them to toast that for me if I order a sandwich.

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)

[ablegirl]

Dear All.

Just going over what i have been eating and noticed lot of jacket potatoes. I have just noticed potatoes are part of the nightshade family, I didn’t realise that so I will be kicking them in to touch.

[PhilC]

@ablegirl wrote:

I have just started back on Minocin had to come off due to supply issues . I was off for over a year. Oh dear, my knees feel like someone has taken a hammer(no make that a mallet) to them they are so swollen and sore. I cannot straighten up or walk and sorry to say this having to pee in a bucket as I cannot get to the toilet. What a state of affairs. I have taken 100 mg M W F this last week. I did try to get back on Minocin a few weeks ago but again the Herx made me retreat.

You may need to lower your dose or switch to doxycycline; it may even be necessary to do both (probably the most prudent course of action). Personally, I believe that most people who have any degree of inflammation would be better off starting out with doxycycline. Compared to minocycline, it has fewer side effects and is easier to tolerate.

@ablegirl wrote:

Of course if I seek medical help I am presented with Steroids, Methotrexate etc. Here in UK you cannot have a biologic until you have tried and failed on a DMARD (not that I want a Biologic) but when you are in a state with little quality of life!!!

That may not be as bad of an idea as you might think. Let’s say that you see a rheumatologist and he or she puts you on prednisolone and methotrexate. After your inflammation is under control and you’re feeling well again, you could reintroduce an antibiotic. Then, after you have been tolerating the antibiotic well for several months, you could try tapering off of the other medications, beginning with the prednisolone. In other words, conventional means of treatment can be a stepping-stone to antibiotic therapy, rather than an end in itself. I am not suggesting that you do this, I am only pointing out that it is an option to consider, perhaps as a last resort.

Phil

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

[Valsmum]

Ablegirl,

I know what you mean about not eating what everyone around you is eating, its tough. I also agree with you that when I have been really strict with my diet then I cheat and eat some dairy or chocolate chip cookie dough I REALLY pay for it. My knees that are free of massive swelling go right back to grapefruit sized knees, then I have to juice fast for a few days just to get them back down to size.
I think in time your gut will heal and you will be able to eat more freely, I know I can now. I could not touch anything on my no list and now I can at 10% of that stuff and 90% fruits/vegs/fish and I’m ok.

Take care!!

[ablegirl]

Hi Phil/Vals Mum.

Phil,

I am so scared of steroids because of their effect on the HPA Axis, it is this that controls the inflammatory balance in the body so it is my belief that once this is disturbed the pro-inflammatory hormones take over. How do you rebalance this. I know from personal experience that I kept very well with my RA until a 6 week course of cortisone then the cat was out of the bag. Also if there is an infectious element the suppression of the immune system would be catastrophic. I know why doctors prescribe steroids because they have a strong anti inflammatory effect but they actually deregulate the delicate balance of pro/anti inflammatory hormones further. I have yet to see a good outcome from someone using steroids. I know you are trying to help and believe me I am not in a good way and I am so tempted to open that little box I have in the cupboard but boy am I scared. So many people develop RA after an emotional event/stressful period that I think it could point to a deregulation of this Hypothalmus/pituatury/adrenal axis. I read a good book by Hans Selye all about the effect of stress on the body he actually coined the word stress and is considered an authority. He was an eminent Endocrinologist.

[ablegirl]

Vals Mum.

After i was diagnosed with RA I moved to live on a Greek Island. My husbands family were very traditional with their cooking through all those years I remained very well. It was only after moving back to UK that my symptoms started to increase again. i asked a Rheumatologist on the greek island if they have RA he said yes but no where near as severe as you see in UK (I presume he would have said America as well). I asked why he said the weather, lifestyle and food. So I think diet can have a huge impact on the severity of RA. I think juicing is very important to alkalise the body but we definitely need those good fats, olive oil provide.

[Valsmum]

Ablegirl

I would never recommend steroids. Steroids = the devil, I have had to wean at a rate of 1/2 mg a month to get off of them. By no means would I ever tell anyone to go on them. I was just telling you I was still weaning off of themto be honest, I did not want you to think I was off all meds, almost ,but not quite yet, hopefully very soon, I’ll be med free, it is so slow when you have severe RA.
Keep doing what you are doing too. I don’t think metheltrexate is a good option. I believe it makes the liver toxic, and it is going to be very hard to recover from it. My uncle took mtx and died of cancer, and last year a friend of mine from one of the message boards was taking mtx and died of cancer, lymphoma.
The recommend juice fasting then eating mostly fruits/vegetables until the gut heals., then the joints heal.
take care

[Krys]

Hi Ablegirl,

When the inflammation is out of hand, regardless of the cause, often drastic measures have to be taken.
I, personally, would have opted for steroid shots (single time) in the knees while having all kinds of anti-inflamatories and detoxification methods handy.
If I absolutely did not want to take steroids, I would choose multiple, quite drastic in intensity, “natural” ways to bring the inflammation down.
The “natural” ways usually take much longer and have to be combined to be effective.

I would do fresh green juice fasting + coffee enemas + potent herbal anti-inflammatories (3-4 caps Curcumin + 3 caps Quercetin + 3 Bromelain capsules 3-4 x a day + added, not every time, 1 cap of Cayenne pepper, papain, fresh Ginger root tea or encapsulated ginger), + further detox (on an empty stomach) of 20 Chlorella capsules or 1TBSP of Bentonite clay dissolved in 8oz of pure water or activated charcoal, mega doses (titrating to bowel tolerance) of Vitamin C powder a few times a day (I cannot take buffered one: it always causes heart/vein problems, so I add a little of magnesium powder + a bit of baking soda).
Sometimes I alternated Curcumin-Quercetin-Bromelain combo (a few days in a row) with systemic enzymes (lately it’s Wobenzym N) for a few days.
I additionally used anti-inflammatory ointments on very painful joints + FIR lamp (I don’t have FIR sauna).

This protocol cannot be used that intensely over a prolonged period of time. In case of sensitive digestive tract lining (and with mycoplasmas it is bound to be far from perfect) it may be too harsh for the stomach and some of the above may cause herx, too. I have severe mucous membranes damage, but I still could tolerate this type of protocol for a few days with no problems at all. At the very worst inflammation and pain, I also added Ibuprofen a few tablets a few times a day, then only stayed on Curcumin, Quercetin, Bromelain, green juices + some cooked veggies (after 5-7 days introducing some cooked chicken) + maintaining the detox on a daily basis.
The longest time I stayed on 3x daily Curcumin-Quercetin-Bromelain combo (+ some other herbs) was 3-4 months with additional Ibuprofen (big amounts) for only a week.

Stephen Harrod Buhner in his book on Mycoplasma (and Bartonella, as coinfections of Lyme) offers a lot of wonderful herbs for blocking cytokine cascade and inflammation. If you had already had them at home, it would be a wonderful addition. But it takes a lot of time to read the book, order or make the tinctures, etc., so I am not listing them as a solution to your problem right now.

Glutathione 3 caps taken with a glass of water + juice of 1/2-1 lemon 3x a day were also helpful for me. As did NAC. liposomal glutathione, glutathione IV pushes, etc. One can herx on sudden big amount of NAC. I did when I increased it from 1 cap to 3 caps. When I increased to 5 caps 2x a day, the herxing was intense for 30 minutes only and then just good feeling.
I did daily foot soaks combined with detoxification mudras and ramrod-straight spine. It immensely helped with overall feeling of toxicity, especially brain toxicity and inflammation.

The above is given as an example only. It’s to say that with severe inflammation, while opting out of steroids, lots and lots of methods need to be combined.

Fresh urine fasting combined with old (at least few hours old) urine rubbed into the skin or applied as compress is supposed to bring about quite miraculous outcomes. The ingestion of urine should be taken when no heavy meds are taken. Otherwise homeopathic self urine is a better choice or starting slowly (to avoid heavy detoxification) from 1 drop a day, increasing by a single drop daily. If ingested in bigger quantity, monitoring pH is important and in case of acidity, adding a bit of baking soda is advised. Too alkaline pH diminishes urine’s antimicrobial effects, hence the need to monitor the pH.
You can read free pages on Amazon of Martha Christy’s “Your Own Perfect Medicine. Clinically Tested! Medically Proven.” The book is designed around medical studies for often specific conditions and some personal case histories.
I am NOT talking you into trying it.
I’m mentioning it to say that there are always options, even when things appear hopeless. I keep it as my last resort sort of option and I think I’ll try it when I’m off abx to avoid future relapses.

I’m sorry if the above sounds like rambling.
It is hard to decide on an additional plan when one is feeling awful and can hardly move due to severe pain. But as you cannot count on inflammation subsiding on its own, and you cannot leave it as it is……
May you find your way back to health soon,
Krys

[DragonSlayer]

Hello, ablegirl:

In relation to diet and knees edema, the condition is so often caused by colitis: When the colon is inflamed it stops processing waste lymph which, in rheumatic disease is often proliferating at high rates. The waste lymph remains within the system and gravity takes over; it falls through hips to knees and on to ankles unless a better colon efficiency can be established soon.

I have found the Edgar Cayce Three Day Apple regimen to be very valuable in treating colitis and the Edgar Cayce Castor Oil Packs also helps speed excess lymph elimination. But diet is key and especially staying well clear of dietary starches, especially refined (flour) and soluble (potatoes) and especially nothing fried like fish and chips or tempura; bake, broil, or grill. Fish/fowl/lamb preferred order and vegetables to steam are those which grow above ground instead of below.

When I had severe edema, I fasted, water-only–in addition to the apples and took it down rapidly. Important to supplement, however when eating: vitD, vitC, niacin, lysine, vitE. And EVOliveOil even as many as six teaspoonfuls daily, but GLA up to 2g effective: Take many borage seed oil (evening primrose or black currant, also) capsules just before retiring. Check out “Fat, Sick, and Nearly Dead” video and do “reset” diet if able to juice.

My worst knee hurt for nearly a year, but eventually the pains subsided and have not had recurrence, with careful attention to diet. I used antibiotics, but Minocin did not help in my condition (A-Spondylitis); it was Cipro (in cycles) and tetracycline with some Flagyl on occasion.

Hope things go better for You soon,
John

[Author]

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