posted
I don't have arthritis. it's mostly in my brain. my major complaint cod is exhaustion, confusion, various propensities to mental issues like paranoia and irritability and obsessional thinking etc. most all of it seems to be related to constant sleepiness. also pressure headaches.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Greatcod, if you did a poll on here, do you think the odds might be close to the actually percentage that LLMD's find in their practice?
I bet a current patient of Dr C in Missouri would have a write-up with percentages on arthritis sx????
He used to love keeping track and looking at numbers.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I read somewhere that 60% of Lyme patients have joint pain/arthritis. Of course I can't recall where I read that and it didn't distinguish between acute or chronic symptoms.
As for me, I don't have any arthritis. I'm all flu-like symptoms...nausea, body weakness and some neuro stuff.
Posts: 561 | From mass | Registered: Jul 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
do you mean arthritis like symptoms or actual arthritis?
I have been sick for 20 years and lots of joint pain in that time but not actual arthritis (i have no actual damage)
If you are going to ask a dr or take a poll it might be good to make that distintion.
charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
I have permanent knee, ankle and elbow damage...I had the RA test run years ago and it was neg.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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Greatcod
Unregistered
posted
Thanks, guys..the reason I ask is that for years Steere is pretty close saying that if you haven't had arthritis, you have never had Lyme. Which is perplexing to me because it seems to me that many neuro-Lymies never present with arthritis. He started with 30, went to 60%, and is now close to 90%.
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posted
well i went 3 years with lyme without a dx and just started abx. I couldn't catagorize it as chronic lyme yet as i have only been on abx for a few months. However, the only Lyme symptom i don't have and never did is arthritis
Posts: 370 | From NJ | Registered: Dec 2007
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posted
well i went 3 years with lyme without a dx and just started abx. I couldn't catagorize it as chronic lyme yet as i have only been on abx for a few months. However, the only Lyme symptom i don't have and never did is arthritis
Posts: 370 | From NJ | Registered: Dec 2007
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
For this OLD lymie,,,100% YES for arthritis,,,and the damaging kind,,,zero cartlage any place you wanna look(by x-ray)
Funny part is ALL of it resembles osteo arthritis cause they dont swell,get hot, or turn red. Just hurt like hell from bone spurs and cysts being where cartilage is SUPPOSED to be!!
Ortho doc back in middle part of 90's jaw dropped like an anvil on a tile floor after being the first ever to x-ray to SEE whats in there!! Was told previous to that,,,there is NOTHING inside you to HURT like that!!
It started in the main part of the hands in palm area there is four major bones,,,then spread to fingers,wrists,elbows, shoulders back, hips and NOW the feet!!
BUT was always told you have OA,,,dont worry it CANT spread!!Okay,,,I am waiting for the NOT part!!Only not I can find is the "Knotheads" that told me THAT!!!(obviously NEVER saw reactive type arthritis before!!)
AFTER I told what was causing it to the same ortho,,,his FAST response was,,,thats nothing I should have caught,,,your GP should have known better!! So they NEVER see caused arthritis I guess!! RA tests have always been negative!!
Arthritis is my NUMBER 1 sx I submit,,,terrible to be able to DO things in a FORMER life and now NOT!!!
Only thing that fixed it for about a year in ONE arm and hand was ortho sugery to the elbow,,,scoped,,,and they froze it solid enough it didnt wake up for 24 hours,,,was perfectly fine for a year!!
So I wanna be froze solid and revived to my NEXT lifetime,,,,what do they call that cryrogenics,,,or something like that!!pain free,,,what a day to look forward to!!alas--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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bettyg
Unregistered
posted
all arthritis except rheumatoid of hands/fingers!
i'm 58; had hip replacement, and surgeon chipped 1 of my bones putting in new one; I HAVE BONES OF AN 80 YR. OLD WOMAN....20_ years. P.U.
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posted
I have arthritis symptoms. The worse pain in my shoulders and neck led to a doc. appointment and I tested positive for LYME. Come to find out the doc. was a LLMD
My LLMD believes that damage has been done in my shoulder sockets. At times I wish they could cut my muscles open and see what is in there. My legs, arms, and back ache at times and since starting treatment they have improved.
I have been treated since 04-06, and at times wonder if my body will ever return to ache free again.
Posts: 108 | From maryland | Registered: Sep 2007
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posted
One joint -- left knee -- I think has Lyme arthritis now. Going to knee doc this week to discuss. I had fibro pain for 25 years, then ankles and knees started getting affected two years ago.
Posts: 13116 | From San Francisco | Registered: May 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
ALL neurological. No arthritis.
Extreme headaches, excessive daytime sleepiness, memory loss, loss of executive function, multiple brain lesions, hyperacusis, bilateral nerve damage (absent cortical responses bilaterally in evoked potentials).
And that's the SHORT list.
Also persistent crabbiness.
It need not involve arthritis.
Maybe Steere has never heard of "neuroborreliosis." We really give these IDSA guys too much credit.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Arthritis like symptoms were the very first thing I noticed were wrong. The pain was so bad in my hands that I could not work (computer work). It got manageable after about a month without any treatment and has been less painful since, but has never gone away and spread to all my other joints.
Posts: 526 | From NJ | Registered: May 2007
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posted
I wonder how many have the HLA DR 4 genotype (Arthritis gene)? I do, Dr K, in CT, said 30% of the pop. has this genotype that makes Lyme worse. One will never be without Lyme symptoms with this genotype, he dx chronic autoimmune Lyme, worse than just Lyme.
I think it is a good test(Lab Corp) to run, shows what one is up against. I was dx with JRA as a teenager, exposed to Lyme at that time. Now, 48yrs old.
From what I have seen in the local Lyme Support Group....the ones who have never had/or don't have joint pain do better with Lyme, like my husband. The ones without joint pain/DR 4 are still able to work. I think it makes a big difference in one's recovery.
My friend had several knee procedures because of Lyme. She doesn't have the DR4 and still able to work with the knee problems. My other friend has stiff hands, wrist, arms. She also came back neg for the HLA DR4. She is still working also, just Lyme.
I am not saying people with just Lyme don't have a struggle, but when you add the HLA DR4 in the picture, things are worse.
Posts: 315 | From USA | Registered: May 2005
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posted
So how is the HLA DR4 test done? And you're saying Labcorp is ok to do it through?
Posts: 13116 | From San Francisco | Registered: May 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I have pain in my lower back, shoulder & neck. I have no idea if it's the "clinical" diagnosis of arthritis.
re: "HLA DR 4 genotype (Arthritis gene)? I do, Dr K, in CT, said 30% of the pop. has this genotype that makes Lyme worse. One will never be without Lyme symptoms with this genotype, he dx chronic autoimmune Lyme, worse than just Lyme."
THIS IS IMPORTANT!
I wouldn't put so much authority in a test of genes. There is a new theory about epigenetics that does not put so much validity in what the tests are prescribing about genetic tendencies. The genetic markers can change or be altered by outside influences!
It may be good to know what you have inhereted genetically but it's not necessarily a permanent condition - the genes can be altered.
"Epigenetics is an emerging frontier of science that involves the study of changes in the regulation of gene activity and expression that are not dependent on gene sequence. For purposes of this program, epigenetics refers to both heritable changes in gene activity and expression (in the progeny of cells or of individuals) and also stable, long-term alterations in the transcriptional potential of a cell that are not necessarily heritable. While epigenetics refers to the study of single genes or sets of genes, epigenomics refers to more global analyses of epigenetic changes across the entire genome.
The overall hypothesis of the NIH Roadmap Epigenomics Program is that the origins of health and susceptibility to disease are, in part, the result of epigenetic regulation of the genetic blueprint. Specifically, epigenetic mechanisms that control stem cell differentiation and organogenesis contribute to the biological response to endogenous and exogenous forms of stimuli that result in disease.
To accomplish this, the Roadmap Epigenomics Program proposes to: (1) create an international committee; (2) develop standardized platforms, procedures, and reagents for epigenomics research; (3) conduct demonstration projects to evaluate how epigenomes change; (4) develop new technologies for single cell epigenomic analysis and in vivo imaging of epigenetic activity; and (5) create a public data resource to accelerate the application of epigenomics approaches."
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Severe Rheum. Arthritis resulted from my lyme. All joints swollen and affected. Housebound.
That was 12/05. I learned of many causes to RA including lyme. I found a doctor to help me verify which causes applied to me and to help me eliminate them.
Turns out I had very high lead and mercury toxicity. Leaky gut due to yeast overload. Food sensitivities. Two years later, I am doing very well. Barely have any arthritic activity except left wrist which lost all cartilage and 3 fingers on right hand that have osteopathic damage. They are weak but useable.
It is very important to eliminate the triggers causing inflammation to your joints. The inflammation eats away the cartilage.
For me, diet has a very direct cause and effect. I can't eat red bell peppers, egg whites, soy and cow milk protein, lettuce, lobster, halibut.
As long as I avoid those foods, I have no swelling and no pain. I always know when I have accidently ingested these foods as my fingers will be slightly stiff and swollen upon rising the next day.
Detoxing has been a long slow process for me. Too much too soon and the joints would visably swell. Today, I believe my toxic load is way down. I try to keep it that way by practicing deep breathing 20 mins daily at same time I am rebounding. I also pull oil which drains my sinuses very well.
I supplement Vit C 4000mg daily as this is very good for cartilage. I also take glucosamine sulfate. I am fresh juicing as another way of getting super rich nutrients into me.
Upon doctor's orders, I avoid beef and pork most of the time. I don't seem to have an immediate reaction to either of these meats but every resource about arthritis says to avoid these meats.
I take Omega 3 supplements and eat fish as often as possible.
After doing very well for quite awhile and having been declared nearly dormant in April, I was bit by another tick in May. I dropped like a rock with all joints instantly flaring badly within 48 hrs of bite. High fever and incredible weakness. The tick tested negative for Lyme. Wonder what the heck it had?
I tested positive for EBV, Babesia, QFever, Tapeworms, H.Pylori. I think Babs may have come with this bite. Heart palps began to occur but all these symptoms quickly went away upon beginning abx for H. Pylori.
I spoke with a hand surgeon about my left wrist which he says is pretty much toast. He believes in infectious causes to RA but he doesn't think I can be permanently healed. He says I can't avoid all the microbes out there and everytime I am exposed I will flare. This really depressed me because it is exactly what happened when that tick bit me.
In my mind, my only longterm hope is nutrition and exercise. Keep my immune system as strong as possible. Age is not on my side.
A cartilage replacement treatment that claims a pretty good success ratio. I am going to talk to my dr about it although it says nothing about helping wrists.
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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posted
Arthretic-type pain was my first and most annoying symptom. I had just been Dx'd with Celiac's, and I was pretty sure I had RA as well. Nope.
Flash forward 6 long years....many bouts with EBV and horrible neuro symptoms, and BINGO! I finally got to a D.O. with God's grace that spotted the Lyme during dark field.
Now that I am on Abx the arthritis has let up some, but I am still feeling bad 6 months into treatment.
Bunny
-------------------- 4 strong winds that blow lonely, 7 seas that run high.
All those things that don't change Come what may. Posts: 103 | From Dallas/ Fort Worth. TX | Registered: Dec 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Ive had migrating pain in joints before treatment much worse the, than now after and during treatment.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
A friend of mine with Lyme is basically cured, but when she has a relapse, her main symptom is arthritic hands.
Posts: 449 | From Vermont | Registered: Nov 2004
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
what % of arthritis is caused by lyme?
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