posted
Ok. i used to be cafe67 but lost my email, moved and changed emails so I had to re-register.
Can anyone tell me if their hands (both) were so swollen that they hurt and were scared about circulation problems?
I had lyme last year for aprox 9 months - I found a great doc and am now pretty well...
However, have a friend who was telling me symptoms (has been sick for about 3 weeks with symptoms) and am conviced she has lyme, they are (docs) leaning towards Reumatoid arthritis.
The thing that convinced me that she has lyme lyme were, I hate to say, a sneaking suspicion when she told me her symptoms - and that's all I have to base it on - just that knowing fear~~~
Her first symptom was Bell's Palsy (classic) and then aching knees only at night, and a bronchial cough that would not go away.
Other continuing symptoms are super swollen hands - her hands are huge!!!!
Also swollen legs, knees on down. Over all exhaustion.
The most unbelievable thing is that her regular doc is giving her the Igenex test (pat myself on the back...) although she would have never have gotten that far without the knowledge and support that I gained from you all last year.
It does kinda sound like unrelated symptoms (cough, aches, swelling) but having gone through what I did, it just seems so familiar!
Thank you for any other info I can get from you.
Sorry to see there are still some old friends here and many more new!
Posts: 5 | From Milwaukee, Wi | Registered: May 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I have no medical training...
But I don't think RA causes bell's palsy...
her symptoms are possible lyme/coinfection symptoms...
Please remember even the bests tests still aren't 100% accurate.
Is there any way she could see an llmd...
I wouldn't want someone who wasn't expereinced to treat me if I had the oppurtuntity to go to someone with expereince.
posted
Thanks AW - I kinda thought the same about the Bell's. But couldn't find anything to support it and also her docs said "yes" it could be part of RA. Ra has many misunderstood symptoms. quote
I think I, as a lay person, had her somewhat convinced that it might be lyme - then I think she got sucked up into the "wanting to beleive that it wasn't because of what the professionals had to say"
She even asked about the ELISA and her main doc said yes it is not accurate and that is how she got so far as the Igenex - I told her that lyme is a clinical diagnosis - but you know how that goes - everyone wants proof.
She said her rheumy doc said in the last 20 years he has only seen two cases of lyme - of course who knows how many have been misdiagnosed.
I am trying to remain calm with her and feed her the facts a little at a time so she won't get turned off.
i think people thinkl Lyme is this very rare disease and have fallen under the spell of docs are superhuman and know everything.
Thanks again - anyone else have input on RA?
Posts: 5 | From Milwaukee, Wi | Registered: May 2006
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Before I was diag with Lyme, I woke up with a stiff neck, by that night my left hand was swollen and became a claw. The next day my right hand had it. Then one knee, then I could not lift my arm above my shoulder because of the pain.
Dr. tested for Parvo Virus B19 and I was positive. Put me on steroid to reduce swelling and vioxx. Told me it would take up to one year to resolve.
After one year, still having problem was told that I had RA. Then I was put on all the RA drugs. Methotrexate, etc. and finally Enbrel (which worked).
Then I found an article about Lyme, got to a LLMD, tested positive, went on abx, and 5 months later got off all RA medication.
Two year later, most lyme problems are gone, but I still have the joint problems (mild pain in one hand most days). Also, I tested positive for HLA-DR4 and have band 31, so it looks like I could have autoimmune problems from the Lyme.
Also, had constant fatigue, eye problems, ringing in ears, brain fog, could not walk (pain in feet), neuro issues, etc. All cleared up now.
This is not a fast disease to get over, many bad days, but after 2 years of treatment I can see the light at the end of the tunnel, and it look great.
Don't give up, keep on the abx and life will be good for you again also.
AGuess
Posts: 45 | From NC,USA | Registered: Jan 2004
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posted
Hey thanks Aguess! I'm sorry for the confusion - this is for a friend. I should have posted misdiagnosed as RA - any experience???
I had lyme last year so most of her symptoms sounded so familiar, I got a sick feeling in my stomach - I just didn't want to be paranoid about diagnosing everyone around me with lyme just because I went through hell and back.
That said some of her symptoms are not the same - i didn't have the swollen hands (crazy swollen for her)or the Bell's Palsy - just wanted some others to chime in with there experiences with being misdiagnoses with RA, because I got so much help here with the crazy things I went through.
She has aching knees at night fatigue, cough - all can be viral/RA symptoms.
OH, Thanks if I didn't thank all of the lymenet people before by the way!
Posts: 5 | From Milwaukee, Wi | Registered: May 2006
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My mom had RA for years and ended up in late 40-early 50's using a cane, and by age 55 was in a wheelchair.
Her hands and feet were not only swollen if she bumped anything she wound get a wound,on her legs and because of diabetes 2 that also appeared arround the same time she had wound that did not heal well. I was still only 20 when she passed .
When I was first dx after 10 years with Lyme disease ( I removed tick, got EM bulseye rash & symptoms) ,Was not treated till 10 yr. later & it was affecting my brain..
At first I often wondered if my mom had also had Lyme due to her symptoms.
She was from Michigan and lived out part of her life in Fla. and then the later part here in Ga..
She was asthmatic but otherwise usually healthy except several bouts of Pneumonia thru the years.
The odd thing was her mom was also crippled terribly w/ RA and had both knees replaced etc.
They were both in Wheel chairs at their deaths , my mom was only 55 at the time of passing & her mom was in her 60's when she passed. But had the disease for about 15 or more years.
She had bronchial asthma- chronic cough. Tendency to have strange fevers at the end and still have a reg. temp.
She also had alot of really odd other symptoms..that seem similar to many of the odd things I have experienced, so I of course wondered if in 1973- 82 she had been misdiagnosed.
It was the early year of Lyme in this country . But because her hands & feet endedup so twisted and bent I do think now that it likely was RA, or both.
We had a cousin that also was from the same area of Mi. and he had suffered with Juvinille arthritis. ( lost contact over the years with that side of the family- but added to my curiousity.She also had severe skin sensitivity.
She passed of Pneumonia after I insisted the hospital admitt her because she was delusional and rambling about fevers and I was affraid of losing her.
They tried to send her home after ER exam, because they couldn't detect a fever, I had to get her there by ambulence - they never even dx. her Pneumonia till after she died.I was too young & stupid to realize they were liable. It was her 3rd or 4th bought with it. She remained in and out of it and somewhat delusional and died within 48 hours.
I do not think she ever had bells palsey though. And I have not heard of its association with RA but its possible.
Her body became frail , she lost alot of weight. She had been a dynamo when I was little so it was disturbing to see her go downhill so fast. She also got a bit of a hump from bending to walk with the cane. She actually didn't drive at all - and walked everywhere before becoming ill.
Assuming they were right in my moms dx. then it could be RA. First her hands , legs and feet swelled but as time went by the hands became very twisted -crooked, same with feet.
Either way its not good news.I hope she gets clear easy to dx. test results.
I have had better luck with MDL than IGednex personally. Don't really know why though.But was happy to at least know for sure what it was.
I am sure she will be too- at least if its Lyme she has a chance of getting better on abx.
They have likely come along way on RA too- but back in the early 80's they mostly gave you a stonger version of OTC meds.Nothing better for the pain.Which I find now to be unbelievable that she was let to suffer.
Pass along our best wishes to her, You may be right- there are alot of similar thing that I noticed between me & my mother.I was tested for RA factor and thats the one thing I don't have.
-------------------- Sandi ( badkitti30043) Posts: 664 | From Atlanta Ga. | Registered: Aug 2002
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posted
Hi again, I forgot to mention I have swelling/edema in hands, knees and lower legs /feet but its not like my mothers was. Minestarted after I wasdiagnosed with Lyme & began treatment and eventually it was found to be linked to combination of untreated high blood pressure and long term IV abx. which caused Kidney damage and retention of fluids..
-------------------- Sandi ( badkitti30043) Posts: 664 | From Atlanta Ga. | Registered: Aug 2002
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hi Cafe 1967,
Here is a bit of good news.
I had Lyme in 1995 and was treated with 6 mths abx after which I seemed to be well. Over next 10 yrs suffered stiff neck, migraines, short-term memory loss, hearing loss and eventually brain fog and hot flashes. No one ever suspected lyme.
8/05 migratory joint pain hit and I was diagnosed with chronic lyme. By Jan 06, I was so swollen and inflamed. It was really all over but we didn't know that, we just thought I had put on weight. My hands and feet/ankles were severely swollen and I could barely stand or walk due to the pain. My hands were practically useless and I could never be left alone because I got trapped behind doors, couldn't open cans or jars and had to have help zipping my pants and pulling on socks, just getting dressed in general. I was diagnosed with RA.
THE GOOD NEWS. I began researching RA and quickly came upon an article by Dr. McDougall titled "Hope for Arthritis". See www.drmcdougall.com. He has been and continues to research diet and arthritis and feels Leaky Gut Syndrome is one cause of RA. He espouses a Vegan diet (this is the least inflamatory diet you can eat) and said if LGS is your problem, try the diet and within 2 weeks you should see improvement. I tried it and the difference in 2 weeks was astounding. I couldn't stand long enough to shower before the diet and could walk 2 hrs after only 2 weeks on the diet. This told me I probably had LGS and diet was key.
I sought out a doctor who is trained in nutrition, believes in LGS. He also identified heavy mercury toxicity and systemic yeast in my body. I have been working with him since April 06 and today I have my life back. I still have some aches and pains on some days, but it is not bad enough to even require an aspirin. Dr told me it would take a year or more so I am very hopeful of a complete cure although for the rest of my life, I will make every bite of food count.
I'm no longer on the vegan diet. A bloodtest for food allergies identified my triggers and as long as I stay away from them, I am okay.
No way to say for sure, but I believe the 6 mths of abx back in 1995 cured the lyme but damaged my gut. Back then, the doctors did nothing to protect your intestines from abx damage and abx are the #1 cause of LGS.
The subsequent symptoms of migraines, etc can be lyme, but they also can by systemic yeast. All migraines, brain fog, shortterm memory problems etc are gone.
I too suffered asthma following the initial Lyme bite. Herbs got that under control years ago but many RA people have asthma. Did you know that Mayo Clinic did a study of sinus and asthma and determined that 95% comes from fungal infection? Yeast is a fungus.
RA is not a disease. It isn't bacterial or viral. It is simply the name for a disorder where the immune system is attacking the body and they don't know why.
Please go to www.roadback.org and read, read, read about the 50 yrs of research identifying a microbial (such as lyme) cause of autoimmune disorders. There is MUCH HOPE for your friend to make a complete recovery.
How sorry I am about your mother and grandmother. Don't wait another moment to learn about the many possible causes of RA including Lyme (well known cause). Clearing up the causes may clear up your friend's illness.
Good Luck!!
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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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Quickly reading through the more popular and authoritative websites discussing Bell's Palsy, I see no link to RA.
Plenty of people have discussed Lyme being misdiagnosed as RA, though....
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Shaz,
From much research and talking with LLMDs about this, I have learned that Lyme is not misdiagnosed as RA. It is one of the causes of RA. Remember, RA is not a disease. Get rid of the cause of RA and the RA will be gone too.
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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