Gimped, need moral support

a guy I know who is in his 60s had arthritis from the age of 40 or so. He used to be a climber, and the arthritis was primarily in his hands, but also in his knees and shoulders. He bought a juicer and made fresh fruit/veggie juice 3 or 4 times a day, and stopped drinking coffee entirely. He always put ginger in his juice, but other than that the ingredients varied. He also made sure to drink plenty of water (8 12oz. glasses per day) and take glucosamine. Also, Consumer Digest did a report on Glucosamine and found that the most effective stuff is Kirkland Signature (CostCo brand).

Also, stretching helps. Stay limber. Good luck.

Wow, that sounds like quite a bummer. I'll keep my fingers crossed for you.

If I were you, I'd at least start with massive doses of MSM, Glucosamine, chondroitin and beer.

luck.

Jeez... Sorry to hear that... Best of luck, and keep us informed!

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Originally Posted by someone who knows this stuff

Rash, arthritis, and negativerheumatoid factor suggests something called Still's Disease to me.

See attached.

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I'd have sent this as a PM, but I haven't figured out how to attach docs to them.

Positive vibes man...

Sorry to hear about that Spats. I hope it's nothing too serious.

good luck spats.

OK, I know I'm gonna get the reputation as the local Lyme nut, but when I hear words like rash, arthritis, lethargy, etc., etc. in the context of an outdoorsy person my immediate reaction is to suspect Lyme or one of its close cousins. Even with a negative test, here are a few things to consider.

1) The ELISA test which is frequently used to detect Lyme (and may well be what you got) is not exactly a model of precision. If you got an ELISA test, you may want to google "elisa lyme" and do some reading. A negative test result may not mean much. If you got a different test, read up on that one. Make sure you understand what is going on.

2) Google "STARI" (Southern tick associated rash illness) and check up on it. Super abridged version - think of it as Lyme, but carried by some different ticks and not detectable by std Lyme tests. Same EM rash, etc... Start with http://www.cdc.gov/ncidod/dvbid/stari/index.htm Depending on where you've been, you could have crossed paths with this Lyme relative/variant. Note that the ranges of both Lyme and STARI are almost certainly far wider than most maps would lead you to believe.

3) Speaking of rashes, google "erythema migrans". Read a ton of what you find. And also look at many, many pics (hit the images link). See if it reminds you of your chest rash.

One of the big problems with Lyme is that the typical blood tests are relatively hit and miss. A good diagnosis is often a result of the confluence of symptoms presenting themselves (if they do) and those symptoms being noticed at a lucky time.

Do not let a single negative blood test convince you that Lyme is not in play. Note that I'm not saying all mystery diseases are Lyme ---- just that you should not let the possibility of Lyme be dismissed too quickly. Make sure your docs are either very familiar with this stuff or that they consult with national level folks who know the issues well. With respect to Lyme, it is not enough for your docs to spend a few minutes looking up what test to order and then relying on blind faith faith in a yes/no result. You have a right to demand more from your docs. You may already be getting it, or you may need to be tenacious and push the issue. Make sure they are really on top of Lyme and its relatives before they take it/them off the list of suspects.

all the ritual +vibes...

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Originally Posted by alpinedad

I'd have sent this as a PM, but I haven't figured out how to attach docs to them.

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Thanks for the pointer. I'll have to find the original blood panel that has some of those tests on it. Still's seems unlikely, since I don't recall ever having or measuring a fever that high (let alone a recurring one) but it's worth investigating.

spindrift: Thanks for the info on Lyme testing. It seems like the first 10-day course of amoxicillin ought to have cleaned it out if it were present, but I'll look into it some more.

++++++Vibes++++++

Hang in there mang, as quickly as this came on it has to be something they’ll figure out.

at the risk of repeating suggestions you may have already recieved,
yes to juicing. at the very least it'll work to detoxify your system, rejuvenate your cells and keep you feeling good and positive.

accupuncture may help you with the joint stiffness...when i was dealing with a nagging back injury a couple of seasons back (including regular spasms and stabbing pains), i smiled and actually felt good for the first time in weeks after having the 19 needles in my back...and just the act of feeling good, i believe played a big role in the healing process...and much to my surprise, i was out on skiis again a week later.

stretching and yoga can also be helpful...

and if you can have energy work done (ie. touchless massage etc), this can be helpful too. i recieved a chi treatment shortly after suffering a serious fracture(skiing), and definitely felt that something was happening at the time. i've since spent the six winters skiing mostly in hard east coast bumps, and there's been no physical reminder of the injury.

these suggestions may not get to the root cause of what's ailing you, but i believe they can help to keep you strong and upbeat and more in the driver's seat as you seek a medical solution.

++++++++++++++++++++++vibes+++++++++++++++++++++

and hope you'll be soon licking this and out doing the things you love to do

definitely not an expert, but something that struck me: if you are taking antibiotics over a short period of time without fully wiping out whatever it is, you could be doing more harm than good. Developing resistance and that shit.

And for some reason trayc's idea stands out in my mind as the most likely one, but then again, I don't know shit.

Best of luck, mang.

Need 2nd opinion...

Diagnosing disease, especially when its oddball, is tough. Get a second opinion from a different doc in a different hospital group- even if you have to pay cash because your insurance won't cover it. I have a couple doctor friends I'll pimp for info, but just to make the sequence clear... you got this rash thing (diagnosed as scarlet fever), took amoxicillin for a day or two but stopped because of side effects. You didn't go an a different antibiotic because the initial disease cleared up but later you started to have arthritic symptoms (how long after?).

Read the wikipedia article on lyme disease, its a decent place to start. Your symptoms sound textbook considering you are an outdoorsy guy. Did you have any tick bites? What kind of doctor are you seeing, how far out of med school are they, and where are you located? And I'm not bagging on your doctor, almost every doctor is good, but they are all better at different areas and yours might not have seen this before. Diagnosing goofy problems is as much art as science, your best bet is to make sure you are seeing the doctor the other doctors go to when they can't figure out what is wrong with their patients.

If it is lyme disease, you might have had a false negative, which is common. You didn't complete the antibiotic course, so if it lyme it went untreated (a couple doses of amox does squat).

I don't think you need juice or supplements, I think you need to see a different doctor. It doesn't hurt anything but the wallet.

Positive vibes mag, hope you figure out what the hell is going on! Keep us up to date!

Have they ruled out lupus? My sister has lupus and her symptoms before it went into remission sound just like what you've been going through. And they did think she might have had lyme disease, but it turned out to be lupus. I know it's much more common in women than men, but it happens and the symptoms are the same. But with my sister, she was young (like 16 when diagnosed) so it took them forever to think of lupus because it's generally found in middle aged women, but really, anyone, male or female, at any age, can have it.

squatch/patches: I finished the first course of amoxicillin (10 days, 3x/day). The second course, much later (very recently), was the one I reacted quickly to and had to stop.

The tough thing about this is that I feel like I'm kicking everything uphill. Doctors don't seem to want to believe that I'm actually in severe pain and can't do things...it's like since there's no swelling and only mild redness, they all just want to say "you have osteoarthritis, no cure, take aspirin". Well, you don't just suddenly get osteoarthritis, and I've had absolutely no history of any pain like this previously.

The rheumatologist was absolutely no help at all. My regular doc finally came around and believes that I actually have a serious problem. He's a good man, has been around a long time, and is easy to see on short notice, so I'm going to see what happens with him this week.

My objective is to get a course of non-penicillin-based antibiotics started. The way I look at it is: we've got antibiotics, we've got steroids, and we've got antivirals. Trying them is cheaper and quicker than running 10,000 tests to try and figure out which one to use, and can't possibly do any harm worse than I've already suffered.

Anyone with awesome rheumatologist referrals in the Bay Area? (Already took down Dr. Lambert's name -- thanks!)

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Originally Posted by altagirl

Have they ruled out lupus?

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Over 95% of people with lupus have positive ANA. Mine (EIA) is negative -- not low range, but negative. So it's possible, but seems unlikely.

Find a good German-trained homeopath.
Try a liver cleanse.

If you are going to jump into the antibiotics thing, do some reading about which ones can get into the central nervous system and which ones can not. If it is Lyme (or one of its relatives) & it has entered the CNS, not any old antibiotic will do.

BTW - I totally understand where you are coming from regarding trying the different approaches. Collectively, the medical world still seems willing to hand out antiobiotics by the truckload to kids with virus induced sniffles - apparently just to shut parents up - even though they know damn well the antibiotics won't do a damn thing. Yet in a case like this they act like putting someone with a very real and major issue on a course of antibiotics "on spec" would cause WW III. Paint me confused.

Once again, good luck...

Going through something like this has to be scary as hell, especially not knowing what it is. I'm sending all the positive vibes and good karma I can. Here's to getting that thing diagnosed and cured fast.

My objective is to get a course of non-penicillin-based antibiotics started. The way I look at it is: we've got antibiotics, we've got steroids, and we've got antivirals. Trying them is cheaper and quicker than running 10,000 tests to try and figure out which one to use, and can't possibly do any harm worse than I've already suffered.

I agree, like I said before start a course of doxicycline, it is simple cheap and safe. Tests are good, but not the whole answer. If they have not done a joint tap they should, sorry that one is a little uncomfortable, but if the is no sign of sepsis, the follow with a course of steroids. You will be barred from Le Tour, and you will need to be on it for several weeks. I didn't reread all the posts, but if all this began shortly after the second dose of amoxicillian, then drug induced polyarthritis would shoot way up my differential list. Don't let them give you the BS line that it won't last this long, etc, it can go on for months. Drug reactions occur far more commonly than people want to admit, and amoxi is near the top of the list.

If you end up on pred., and it works, don't stop it too soon. As miserable as it can be, once you start it you want everything to be totally quiet for a long time, relapses are a real bitch, and harder to get under control.

Asked one of my doctor friends about it and he had no idea- he is not a rheumatologist and laughed at me for thinking he could help. Everything mentioned is a possibility and it sounds like you are doing the right things. He did seem confident you would get it diagnosed sooner or later (hopefully sooner!). Good luck- sorry I couldn't be more helpful.

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Originally Posted by spindrift

Collectively, the medical world still seems willing to hand out antiobiotics by the truckload to kids with virus induced sniffles - apparently just to shut parents up - even though they know damn well the antibiotics won't do a damn thing.

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These patients need an antibiotic otherwise know as Placebomax, it's the new Zithromax. I recently formulated it with some highly reguarded chemists. It will be distributed through Phizer. I will be a billionaire in six months.

hutash: that is excellent information. Thank you.

BTW, the doctor gave me a short, light course of prednisone to see if it made a difference. It didn't cure, but it helped.

Heavy metal poisoning? (From water, etc.)

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Originally Posted by trickflip

Heavy metal poisoning? (From water, etc.)

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I'll put that on the test list. We're in a very old house that still has some lead paint (though much of it was removed before I got there).

Allergies and immune reactions, AFAIK, sometimes don't have a single cause. If you get too many irritants in your system, they push you over the edge and you react. Often people react so strongly to a single irritant that there's an obvious thing to blame. But it can be that there are a whole mess of irritants in your system, none of which are enough to trigger a reaction by themselves, but the combination is enough to cause a problem.

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I'll put that on the test list. We're in a very old house that still has some lead paint (though much of it was removed before I got there).

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It make sense to examine potential sources, but talk to your doctor about being tested for various known contaminants as well.

Mrs. C.'s first guess from the symptoms, and sudden onset, was psoriatic arthritis. I know someone else mentioned psoriasis, and you said you don't have a family history, but a family history is only partly an indicator. Read more here:
http://www.mayoclinic.com/health/pso...hritis/DS00476

The chest rash you mentioned -- could it be related to psoriatic arthritis?

ElC: Good thought. I've looked into it, and there are a few strikes against the psoriasis theory:

-The skin rash wasn't psoriatic (no scaling or thickening, just redness and itching) and relatively sudden in onset.
-99% of it was on the chest. None of it was on the elbows, knees, scalp, or lower end of the spine (typical psoriasis locations).
-The rash basically disappeared along with the initial antibiotic treatment.
-I've noticed no fingernail or toenail problems (and I've looked, hard).

I'll keep an eye out, though, for any changes that could suggest it.

OK, Spats. Here ya go. This guy will heal you. Your move.

http://www.pocketsanctuary.com/Heali...hop0909006.pdf

posi-vibes

Hope you get well soon spats!!:smile:

Freaky Spats. That has to suck. Good luck dood.

The US medical system is an interesting beast, but when you figure out where the $$ flow it explains a lot. The Dr's get paid for doing surgery, therefore we are damn good at that. Now for preventive care, the stuff that requires a bit of "art" to diagnose, we aren't nearly as good at. Living in the UK was an interesting insight into another countries medical system. Wouldn't ever want to have surgery in the UK (the ER we ended up at had holes in the wall, everything falling down, very 3rd world), but their preventive care was far better than what we typically receive in the US.

I'm super impressed by all the good educated ideas presented as usual by the maggots. Good luck

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Originally Posted by Spats

ElC: Good thought. I've looked into it, and there are a few strikes against the psoriasis theory:

-The skin rash wasn't psoriatic (no scaling or thickening, just redness and itching) and relatively sudden in onset.
-99% of it was on the chest. None of it was on the elbows, knees, scalp, or lower end of the spine (typical psoriasis locations).
-The rash basically disappeared along with the initial antibiotic treatment.
-I've noticed no fingernail or toenail problems (and I've looked, hard).

I'll keep an eye out, though, for any changes that could suggest it.

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As someone that has psoriatic arthritis, the toenails were the only way it showed up on me although it has progressed to now include my fingernails. However, I think a good rhuematologist is really the best way to get the cause of whatever is the problem and it sounds like your doctor has allready ruled it out. Wish you the best, since if you are experiencing any of the pain levels I went through before treatment, the pain really effected all aspects of my life in a negative way. Positive vibes sent.

s2s: PA is one of the few things I've found that has a pattern of joint involvement close to what I'm experiencing. Again, given that I have no family history and etc., it seems unlikely, but I'll keep close tabs.

Any news (either good or bad)? How are things going for you now, Spats?

Very sorry to hear about this all for you...

Just a quick addition... I had gutteral sp? psoriasis, which is essentially psoriasis brought on by a sore throat. Basically I have had no history of it nor has my family but it was brought on by a really really bizarre severe sore throat that was undiagnosable and came and went on it's own, psoriasis followed basically just a weird rash then went away with some sun. Just thought I'd add a little to the psoriasis theory. also antibiotics (two different types and courses) never cleared the throat thing.

So last Thursday I woke up with a sore throat. Next day sinus infection, day three start coughing. Sinuses clear up but now my left knee and even worse my shoulder are hurting pretty bad. I was unable to use my left arm to comb hair or bush teeth this morning. Let’s see where this goes

Hey Spats -

Sorry to hear things aren't going so well.

I recommend checking out Dr Schulze's herbal cleansing products. All natural organic stuff. I've used his products for years and the shit works! (pun intended) Tried the 30 day cleanse a couple years ago, if I had a serious affliction like you've described I would begin this pronto.

http://www.herbdoc.com

Good luck, see ya in the Chutes!

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Originally Posted by Ubersheist

Any news (either good or bad)? How are things going for you now, Spats?

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The bad news is: I saw my doctor again and we still don't have any definitive diagnosis. He says that in his experience, early rheumatoid arthritis basically goes away with prednisone, so he's ruling that out -- but that doesn't tell us what it is, just what it isn't.

The good news: I'm doing somewhat better this week. I'm in less pain and taking a lot less aspirin. I'm still a long, long way from recovery, though, and I don't want to get my hopes up.

Thank you for keeping me in your thoughts. It makes a difference.