lyme

wocaliFebruary 22, 2008

please help me im headed towards a wheelchair!! i tested neg at igenix for lyme last week but 6 yrs ago i was pos..........i was 1000 times better back then.what do i do.cant get out of bed in the am.i just turned 50 and i used to walk 5 miles aday ! this is not my age........i no i have lyme coz im getting worse not better

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apollog

Is it possible that there is some other condition (arthritis or other autoimmune disease) that is causing these problems?

    Bookmark   February 22, 2008 at 3:26PM
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cacye(Denver,CO)

Actually, chances are good it is Lyme. The tests are generally likely to show acute cases but not chronic cases. I am not sure why; but this has been reported in one of the sites I have seen on Morgellons(which is what I have). Did they give you antibiotics when you first got it, and if so, what? Can you get your doctor to look at what other people say about the limitations of the test if you show them to him or her? I admit I have never had luck doing this, and I am a laboratory technician with a major in microbiology. Sometimes you can't even get them to look at their own JAMA if its you telling them anything. But I digress. Let me know what happens write pastine29@hotmail.com. I care, and hope you can get a doctor to listen.

    Bookmark   February 26, 2008 at 5:11AM
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rusty_blackhaw(6a)

One has to be very careful in interpreting the results of Lyme disease testing. Some tests may not be accurate or show false-positive results because of other disorders. According to the FDA:

""The results of commonly marketed assays for detecting antibody to Borrelia burgdorferi (anti Bb) . . . may be easily misinterpreted . . . . Although package inserts for some commercial assays describe their intended use Âto aid in the diagnosis of Lyme disease, this statement does not fully reflect current knowledge . . . and many such assays yield potentially misleading results. . . . Assays for anti-Bb frequently yield false-positive results because of cross-reactive antibodies associated with autoimmune diseases or from infection with other spirochetes, rickettsia, ehrlichia, or other bacteria such as Helicobacter pylori."

Adding to the problem are labs that conduct testing on improper samples or using means that lead to inaccurate results. On the basis of these tests, people with chronic symptoms that may be totally unrelated to Lyme disease are sold a variety of unhelpful treatments.

The best advice is to not settle on Lyme disease as the problem without seeing a qualified physician who will consider all possible causes for your illness, and give you an accurate diagnosis.

More on Lyme disease here, here and here.

    Bookmark   February 26, 2008 at 11:59PM
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sam_md

"i no i have lyme coz im getting worse not better"
Sounds to me like you're calling it lyme for lack of anything better. You are short on details in your post. What treatments have you had? What are you expecting from a herbal forum, a diagnosis?
Long story short, I recieved two positive Western Blots from IGeneX in 2004. I think that they were both erroneous. As you know IGeneW won't accept insurance and is being investigated, see if you can open
http://www.nytimes.com/2005/08/23/health/23lyme.html
In 2005 I received 90 days IV antibiotics via PICC line. Cost was $5000/month. After the line was removed the joint pain came back with a vengence. Joint pain was mostly in knees but other joints also.
I believe that I am now properly diagnosed with Psoriatic Arthritis which is an inflamatory arthritis associated with psoriasis. I am receiving Humira injections, you need prescription coverage for this. I have also had knees tapped to drain fluid build up, and cortizone injections however this is only a temporary fix. I am 53.
Prednizone also helped me but it has side effects like weight gain.
You are skimpy on details, I'm guessing its hard to type. If you have anything like I did you hurt all over, losing weight, and always tired. The fatigue is from anemia of inflamation and iron tablets won't help. You have to get the inflamation in check.
Rheumatoid arthritis and psoriatic arthritis are very similar, seek out a good rheumatologist, I sure hope that you have good health coverage, you'll need it.
Sam

    Bookmark   March 24, 2008 at 9:29AM
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njbluebonnet

wocali, wow, you have the same birthday as me!

As to Lyme, it's VERY controversial. I've researched both sides of the arguments. I have Lyme as well as my son and daughter. Good news -- I know two women who were in wheelchairs who are now symptom free. They both had Lyme. Bad news -- it took more than one IV treatment and it's expensive. Hopefully you have a good insurance company. When you've had it a long time, it may take a long treatment time. There are over 100 strains of the Lyme spirochete, and peoples bodies react differently. Lyme is the great imitator so it's very hard to diagnose. I spent 20 years going to different specialist and finally gave up. Then I moved to NJ and found the answer, thanks to my chiropractor who recognized my symptoms from his own experience with Lyme. My daughter is a wreck; can't work or go to school. She is on her third treatment but gets better each time.
I can't say you have Lyme, but it sounds like a viable option. But there are FEW doctors that know enough to treat it effectively. I met a kidney specialist from Oregon at my doctor's because he couldn't find a knowledgeable doctor anywhere else! Let me know if I can help. A good website to check out: http://www.ilads.org/basic2.html

    Bookmark   March 25, 2008 at 5:35AM
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sparrowhawk(z4 ME)

I highly recommend Stephen Buhner's book Healing Lyme.
This is extremely informative and goes into great detail about how spirochetes are able to avoid being detected by our tests. If this is indeed what you are fighting now, you need to get your immune system back on track.

Here is a link that might be useful: Healing Lyme

    Bookmark   March 29, 2008 at 8:44AM
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rusty_blackhaw(6a)

Buhner (who is described on various websites as being an "Earth poet" and herbalist) is arguing that Lyme disease is underdiagnosed.

There actually is evidence that it's being overdiagnosed and overtreated.

If you added up all the people who've been inaccurately told they have Lyme plus everyone unnecessarily being treated for "candidiasis", the total would be mind-boggling.

For proper treatment, the right diagnosis has to be made first - and it's unlikely to come from "Earth poets" or Internet forums.

    Bookmark   March 31, 2008 at 10:19AM
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sparrowhawk(z4 ME)

True, the right diagnosis is critical! I will certainly not refute that.

In our neck of the woods, lyme is fairly new and doctors are forgetting to test for it. In my experience, lyme is underdiagnosed here. I have friends that have gotten very sick before proper diagnosis. I always thought it was transmitted from deer ticks, but that is not the case anymore. It's scary how completely debilitating this disease can be!
Earth poet or not, I'm a tree hugger that has used much of his advise with great success :)

    Bookmark   April 3, 2008 at 6:59PM
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lucy(6)

"I always thought it was transmitted from deer ticks, but that is not the case anymore." - What do you mean? What other way is it supposed to be transmitted? But in any case, you're having decided all by yourself that you have Lyme disease is nuts because at the very least you could be unwittingly NOT treating something that should be addressed. Unless you are a doctor yourself, you can't appreciate just how many diseases that can mimic the symptoms, and if you persist in fooling yourself that the only possible answer is Lyme, then you could end up very sorry some day.

    Bookmark   April 4, 2008 at 4:57AM
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sparrowhawk(z4 ME)

All ticks can transmit lyme disease. One friend of mine got it from a dog tick. Lyme spirochetes have also been found in biting flies, mites, fleas, and mosquitos. Transfer to humans through biting flies have been documented in Connecticut and Germany. Transfer from mites has been documented in Russia. Mosquito transfer is speculative.

Spirochetes can be found in breast milk, tears, semen, and urine. Although little research has been done regarding transfer through these methods, it is a real possibility. Probably best not to walk barefoot where the deer and the antelope play (and pee)....

    Bookmark   April 4, 2008 at 7:48AM
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rusty_blackhaw(6a)

My understanding is that Lyme disease is transmitted through bites of a limited number of ticks, and has not been found to be spread by other arthropods or insects. Further, there's no evidence that it's spread by contact with breast milk, other secretions or personal contact.

sparrowhawk, where did you hear these claims?

Here is a link that might be useful: Lyme disease transmission

    Bookmark   April 4, 2008 at 12:12PM
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sparrowhawk(z4 ME)

I heard it from the Earth Poet ;)
I did not see direct footnotes in his book, so I did a search and find an article in the New England Journal of Medicine about the man who got lyme from a biting fly. It is admittedly rare, but this case is from 1990 so I'm surprised the CDC doesn't acknowledge it.

I did not say that there was evidence of spreading through bodily fluids. What I did say is that the spirochetes can be found there and further studies need to be done to verify the possibility of transmission.

Here is a link that might be useful: Lyme from biting fly

    Bookmark   April 4, 2008 at 6:02PM
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rusty_blackhaw(6a)

It's an interesting report, but I can see why experts on this disease apparently don't consider it the "clear documentation" that the website operator insists that it is.

You have a person living in an area where Lyme disease is common, and who could have had opportunity to be bitten by a tick and not noticed it, around the time that the fly bit him. The "classic" rash of Lyme can be imitated by other reactions, and doesn't even occur in many cases of Lyme. It would more convincing if they found the organism in the mouthparts of flies or other bugs.

Correlation doesn't equal causation (if A occurs and then B happens, it doesn't necessarily mean that A caused B).

    Bookmark   April 5, 2008 at 2:30PM
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