randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
let me see if i can clarify this.
my sister has rheumatoid arthritis. she has tremendous swelling, redness and lots of pain. some days she can barely walk and her hands really hurt.
she complains of not being able to sleep, waking up a lot or getting just naps.
she's been to numerous doctors and this last one said tests confirm rheumatoid. she's been on tons of STEROIDS. yes, i know, but hey, who am I????
right now she's on something called rheumatrex or something. she's having problems with it and is still in pain and has swelling.
so here are my questions. i think she has lyme, but hey, nobody ain't gonna listen to me, the idiot with the psycho disorders.. oh, where was i?
so can lyme manifest as ra or do you actually get ra after getting lyme? if you treat the lyme would the ra go away?
i've heard lyme can mimic other diseases. so does that mean you really don' have them OR it's the lyme? i'm sort of confused about this.
oh yeah,just remembered. if you treat for ra but it's lyme and they give you steroids and all that, won't it make the lyme worse, which will in effect, cause more symptoms???
i need some experts here guys...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Weren't you bitten in Dayton? I was bitten in Dayton. Didn't your sister get bitten by the same ticks you and I did? I'd say Lyme.
Sorry I don't know the answers to your other questions.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
no, i live in texas and was bitten at lake ray roberts up near gainesville, near the border.
my sister does live in dayton and i grew up there. she's the one who works at good sam hospital in x-ray.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Hi randibear,
I'm sorry your sister is going through this too. You are wise to question her RA diagnosis, and try to learn more for her. She is lucky to have you by her side.
One of my very first misdiagnoses was RA, at the time I was sero-negative for RA (don't know if I ever would have tested positive, which still is not PROOF of RA, there is no proof of RA, or Lupus, or MS, etc). I was diagnosed clinically, based on redness, warmth, and swelling of joints on both sides, and lots of pain.
Yes, Lyme can present as RA symptoms. But let me clarify, because it is confusing. Many of the things that Lyme symptoms mimic do not have a defined cause, and are just a word to call a set of symptoms, like MS, or Fibromyalgia, or Chronic Fatigue Syndrome. Even Alzheimer's or MS or Parkinson's, etc. etc. do not have known causes.
So when someone can have those symptoms or sets of symptoms, and they get a Dx of something like RA, they can have all the *symptoms* of RA, but actually discover the *cause* of it, and therefore treat differently (rather than assuming it is an autoimmune disorder).
I believe that some people with RA respond to immune-modulating meds and steroids because for a time their body is not able to produce an inflammatory/immune response to the Lyme (or mycoplasma, etc), so the symptoms can decrease for a time. I think many actually do NOT respond well to those treatments (either short or long term) because the infection is allowed to spread deeper and cause more damage (toxins from natural die-off, etc).
I hope that all made sense, I am pretty out of it after my long long road trip to my LLMD this last week.
I will try to summaraize my point here: RA is not fuly understood, they only have theories as to what causes it, and why RA meds sometimes work and sometimes don't.
So it very well could be Lyme causing her symptoms (that get categorized as "RA" by Rheumatologists that don't look further than treating symptoms and assuming RA is all that needs to be known or defined). Or it could be mycoplasmas, or another infection, or all of the aove.
There is something called "The Road Back Foundation" that is based on treating RA with low-dose antibiotics (based on the studies that find mycoplsmas and other infections like Lyme in the synovial fluid in the joints. Many people respond very well to this approach to RA.
Personally, I would try to help her seek an evaluation for Lyme from an LLMD, and look into meds that can treat both Lyme and RA (like low-dose antibios), and see if they end up helping. That could be a good compromise, if she won't budge otherwise.
See what you can gather for her as far as materials on that kind of treatment for RA, maybe if she reads it from somewhere else it will bolster your words.
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I can't really answer your question, but did want to say that before my Lyme diagnosis, when I was being referred from specialist to specialist....
I saw a Rheumotologist that ran tests and one that I tested positive for was the RA Factor test.
The doctor felt it was a false positive but still wasn't sure what it was.
Knowing what I know now, even if I was positive for many of these "imatator" diseases, I think I would still try a trial time with abx.
Good luck to both you and your sister.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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bettyg
Unregistered
posted
randi,
sounds like GOUT TOO! dad had that really bad and could NOT walk. he'd come down our upstairs steps on his butt for many years. his hands had terrible gout in them.
arthritis/rheumy dr. gave a presentation last fall on RA, and showed us photos of hands/feet, etc.
you could have knocked me over; there was a photo of dad's hands!! he asked if it was RA or GOUT; GOUT.
how do you know that; "that's my dad's hands and i've seen them like that most of my life!"
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Randibear
I have lyme induced RA. Let me clarify Nenet as she is right. RA is not a disease. It is not a bacteria, virus or fungi. It is just a name. A name of a disorder wherein the body attacks itself...cause unknown.
There are actually many things that can set off RA and lyme is definitely one of them. Lyme is not the only thing though. Mycoplasma is the most common culprit of auto-immune disorders including RA.
See www.roadback.org. This website is dedicated to the infectious causes to RA and other A.I. diseases. It uses a low dose antibiotic protocol and the FDA has approved this treatment.
This low dose protocol has a 70% success ratio compared to methotrexate which has a 40% ratio. So which medication did my first rheumy recommend? Oh yeah. Methotrexate. He screamed at me literally for insisting on the antibiotic but he did comply.
I then set out to determine if other things could also be causing my RA. Things like infected root canals, heavy metal toxicity, food allergies, leaky gut syndrome. Oh I had them all.
When I was diagnosed, I was housebound and crippled in every joint. 3 mths of treatment I was able to work again and 6 mths later I was 90% functioning. The first year was kind of 2 steps forward and 1 step backward.
At the end of the first year, my wonderful integrative family physician had done all he could. He did not actively try to identify bacteria as he felt that clearing metals, parasites, healing my gut would all bring my body back into enough health to deal with the bugs themselves. I was doing great but not healed.
I sought out an ILADS LLMD. I was ready to go after bugs with drugs. Did I have any bugs? Oh yeah.
Babesia ducani, mycoplasma p (high, high levels), h. pylori, EBV, tapeworms, parvovirus, QFever....I am sure I am leaving something out.
For the past 2 yrs, I have been working on those. I live a very normal life. 100% functional except my left wrist lost all its cartilege and so is very weak. I am left handed so this was a significant loss.
RA is extremely serious and will shorten your sister's life, especially if she keeps using conventional treatment.
There is no such thing as either Lyme or RA. If she has positive CCP for RA, she has RA and will be suspectable to it for the rest of her life.
Her only hope of healing is to eradicate the bugs, metals, parasites, etc that are driving her immune system into overdrive.
I absolutely do NOT BELIEVE in an immune system run amuck. There is a reason. The immune system is fighting something but you must stop it or you will be destroyed.
Very first and simpliest thing your sister must do is change her diet to an anti-inflammatory diet. Most rheumies won't endorse this but they also don't endorse ongoing infections.
Tell her to try a vegan diet and eliminate soy and sugar as well. The vegan diet will eliminate all animal products including butter and eggs.
In only 2 weeks she will know if this diet is helping. Tell her to eat lots of cruciferous veggies. They are very detoxifying as are fruits. Eat the low sugar fruits.
Take Vit D3. Build up to 5000 IU daily. This is anti-inflammatory, anti-bacterial.
My computer is acting up right now or I would give you links.
All I say is true and accurate. I had severe RA. My current LLMD is also a rheumatologist and she said I had "explosive RA" the likes of which she has only seen 3 or 4 cases as bad as mine in 15 yrs.
Yet I ride horses, work, groom my dogs (poodle) and do everything else I want. I can run, jump, pick up my grandkids, etc.
I am painfree almost all the time.
I speak from experience.
Luvs
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Here is an article in The Roadback Foundation's spring newsletter regarding Dr Scammell's talk at The Empire State's Lyme Disease Association conference regarding lyme disease and its connection to rheumatic diseases.
On March 14th, 2009, RBF was invited to make a presentation at the Empire State Lyme Disease Association's (LDA) one-day conference, in Manorville, Long Island. RBF was extremely honored to be a guest at this event and to share information on the history, scope and rationale of Dr Brown's approach to treating rheumatic conditions. Approximately one hundred and twenty chronically ill Lyme disease patients, their families and friends, and local physicians were in attendance, a number of whom shared the experience of the onset of a rheumatic disease after contracting this very complicated, serious set of tick-borne infections. Madeleine Scammell, DSc (Environmental Health Sciences) gave a compelling overview of the Lyme/rheumatic disease connection to a rapt audience and fielded expertly the many questions that ensued. RBF is grateful to Dr. Scammell for following in the footsteps of her late father, Henry Scammell, author of The New Arthritis Breakthrough and Scleroderma: The Proven Therapy That Can Save Your Life.
RBF is committed to providing educational resources to the ever-increasing number of rheumatic patients visiting the support forum, including those diagnosed with the added complication of Lyme disease. To these ends, RBF remains cognizant of the importance of expanding its knowledge base to include all potential infectious causes for rheumatic disease. By reciprocal resource-sharing through the forming of ties with sister organizations such as those active in the chronic Lyme community, the educational resources RBF can extend to rheumatic patients seeking AP will continue to be enriched greatly.
To download a PDF copy of the slide presentation given by Dr. Scammell click here.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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