posted
Have you or anyone you know had rhumetoid arthritis as a symptom? Thanks ~R
Posts: 24 | From Studio City, Ca. | Registered: May 2007
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Yep. All my other symptoms cleared up but the joint pain progressed into full blown RA. I was a high moderate, just 4 pts from severe. I thought I was headed for a wheelchair. Every joint was affected and I read where people with 30 or more joints affected had a 75% chance of dying within 5 yrs.
That was 14 mths ago. I just had my first retest and I am now a WEAK POSITIVE and the doctor says I am nearly dormant. He rated me BORDERLINE.
I am recovering from RA and you can too. Feel free to PM me if you would like to learn more about what I have been doing.
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
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Member # 8090
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PS: I find very few people here whose main symptom is joint pain and/or RA.
I find that encouraging. I believe it means this symptom may be the easiest to cure!!
-------------------- 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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All my major joints are terribly painful and swollen ( I am in bed most of the day ).
I was misdiagnosed with RA for 6 years and found out in mid-March I had chronic Lyme ( CDC/NYState/ IGenex Positive ).
Mine is very very destructive. It is eating through and destroying all my cartilage. I have nothing left in my wrists, no medial cartilage in right knee and less that 1/3 of my meniscus left in that knee. it has started in my left ankle where the deterioration is visible on x-ray. This is as of almost a year ago...I haven't had updated x-rays b/c I am too scared to know the rest.
Funny thing...my RA factor is not positive. Tested positive maybe 2 times and it was 1 point away from being negative. Also, the basic RA ttest for inflammation is ALWAYS negative, despite by joints being swollen 2X normal size.
What is this about being dead in a few months if you have severe RA? How does that happen ? I have had these severe symptoms for 6 years now but now I know it's not my immune system attacking, it's the lyme.
Jamie Posts: 8 | From saratoga springs, n.y. | Registered: Mar 2007
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luvs2ride
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Member # 8090
posted
Hi Jamie,
I'm glad you are not dead after 6 yrs of RA. I have no idea how much truth there is to the statement 75% chance of dying in the first 5 yrs. But I do know there is a shorter life expectancy in people with RA. Some speculate it is due to the RA drugs and some say it is the damage done to our organs by systemic inflammation.
It doesn't take a rocket scientist to understand that if you suppress your immune system, you are going to be more suseptable to infection, illness, disease and death. Chronic ongoing inflammation in the body is very damaging to the vital organs as well as the joints. The joints may cripple us but they don't kill us. Damage to the heart, kidneys, liver or lungs though certainly will kill us. We need to eliminate the inflammation quick fast and try to do it without the immune suppressing drugs. Especially if you think Lyme is the source of your RA.
I do not think you were misdiagnosed. I believe you have RA caused by Lyme. There is such a thing as seronegative RA meaning normal blood but still suffering from joint inflammation and joint damage. The good news is if you get rid of the source, you will get rid of the RA.
I asked a biological dentist, who is a member of ILADS and considers himself an expert on lyme, if Lyme causes RA or mimics RA and this was his answer:
What is RA? It isn't a bacteria and it isn't a virus. It isn't anything except a name given to a disorder where the immune system is attacking the body. Cause unknown. So if you have Lyme and you have chronic inflammation in your joints causing joint distruction (RA) then what you have is Lyme disease causing the condition known as RA.
It has been proven that Lyme can cause RA. There is argument in the medical world as to whether or not the Lyme remains or if the Lyme just damaged the immune system to the point it became stuck on "go" and can't stop attacking.
I believe the Lyme remains. I do not believe our immune system gets stuck or confused. The lyme is in the joints.
Lyme is only one possible cause of RA. There is also a known connection with heavy metal toxicity, mycoplasma, yeast, infected root canals and food allergies. I believe when our immune systems become compromised, most of us are suffering from more than one of these things.
All of them have to be addressed and the immune system has to be supported and built up as it is the best weapon any of us have.
I have brought my blood levels down from "high moderate" rheumatoid to weak positive and I fully intend to bring that down to normal. Along with this, my joint involvement has dropped from all joints to just a few and never more than 2 joints at any one time. I am very functional at this time.
In addition to a very good doctor who is treating all the issues outlined above (no, he isn't a rheumatologist, the rheumy doesn't believe any of this and I only go to him every 6 mths to check my progress) I also have prayed faithfully to God for healing and thank him daily for the healing I have experienced so far. I can do everything right and if God doesn't choose to heal me, I won't be healed. I often fail to mention my faith in these posts and that is simply wrong.
The things I have done that have improved my condition so far are:
1-diet Most important of all things I have done. It is necessary to change to the least inflammatory diet possible. For me that was a vegan diet. It improved my symptoms by 50% in just 2 weeks time. I haven't stuck to vegan, everytime my joints start to flare, I go back to vegan and things calm down. Additionally, my doctor did a food allergy bloodtest which identified foods I am allergic to and I must avoid them. I believe lyme disease altered my body making me allergic but there are many doctors who believe food allergies tax our immune systems making us sick. I'm not talking about the kind of allergy where you eat something and have an immediate reaction. This is much more subtle and you actually will crave the foods you are allergic too. Symptoms include bloat, gas, fatigue, itching and joint aches and pains. Food can make you healthy or make you sick and no one diet fits all people. You must find the diet right for you. However, there are certain foods that are damaging to everyone. They include sugar and processed foods.
2-Heal my leaky gut. A study on AIDS conducted at Yale found that 70% of our immune system resides in our gut. A damaged gut allows bacteria, parasites, fungi and partially digested food into our body that was never intended to be there. This alone can make us very sick and produce all the symptoms described here at Lymenet. I have been on supplementary enzymes and amino acids for 1 yr in an effort to heal my gut.
3-Avoid prolonged stress. Do something everyday to calm your mind like exercise. It not only relieves stress but builds up the immune system too. We all live under too much stress.
4-Detoxify. My body detoxes poorly. I have been receiving glutathione and lipostabil injections for 1 yr to aid my liver in detoxing. I can't do epsom salt baths as it puts me into pain, but for many it is a great detox. I do skin brush and soak in a hot tub with a small amount of benonite clay. I soak for only 10-15 mins as more than that creates more detox than I can handle. For a long time during this illness, I could not sweat. I am finally sweating again and I see this as a sign my immune system is back at work and trying to detoxify me. Sweat is a wonderful detox and many people get great benefit from InFared Saunas. Again, too much detox too fast for me to handle. I must go at the pace of a snail.
My doctor says illness is a teacher and I the student and once I learn the lesson, I will get well. I think the lesson I am having to learn is to moderate. I'm a hard charging Type A personality. Stress played a huge role in the downfall of my immune system. I believe Lyme was just an opportunistic bug that moved into a good environment and set up housekeeping along with heavy metals and yeast. It took years to get sick and looks like it will take years to get well.
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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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Yes...this was sis' first dx. (RA)
She saw no rash. Misdx'd RA and given steroids (big mistake, big!).
Many months later Igenex test positive for Bb.
Original WB was "negative" for lyme...only 2 markers (the first 2 that show up!). Her GP had gone by "old" standards to Dx lyme...multiple bands.
Now VERY crippling arthritis and osteoarthritis. Both knees have been replaced so far.
She...and I...believe a TON of nutritional supplements literally have kept her ALIVE.
At one point she was completely bedridden.
She also came very close to losing her eyesight (could only see the big "E" on the chart). It did take steroid shots IN HER EYES to stop blindness.
Obviously she was really scared by the thought of more steroids, even "local".
But it worked to save her eyesight.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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