posted
Well, my rheumaologist I was seeing when all of my joints were flaring up this summer definitiely does not believe my LLMD. Also, I am CDC positive on the very Lyme test that she gave me!
Anyway, I told her that the prednisone was not a great idea becasue it suppresses the immune system and allows Lyme WB tests to be negative when they could be positive. I told her that the body will not be producing antibodies when it is suppressed thus allowing Lyme to go undetected.
Am I wrong? She said that the WB tests for proteins and the actual bacteria. I told her that it tests for antibodies to the bacteria.
Will someone clear this up for me.
BTW, all of my symptoms have gone away since starting antibiotics and she still says "I just don't think it is Lyme".
posted
My old doctor said the same thing -- even though my Western Blot was CDC positive, I STILL did not have Lyme .... apparently I have Somatization Disorder.
I'd stop seeing the rheumy, she is not Lyme literate and you are seeing results with your other treatment.
She's wrong about the Western Blot, it tests for antibodies.
It's criminal the ignorance MD's have about Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks sixgoofykids! I thought I knew what I was talking about but she seemed so positive.
Yes, that was my last visit with her. I like to keep her happy because she has been the most open minded of all of the recent doctors. While she says, "not Lyme"...she still seems interested in the case.
posted
Actually, I think Western blotting can do both. If I understand this correctly, WB can detect specific proteins in a mixture by flooding it with radiolabeled antibodies specific for the protein or it can be used to detect specific antibodies in a mixture against known antigens of well-defined molecular weights.
I believe Western blots for Lyme use the latter method though.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Wish you could fire that doctor. You sound intelligent and doctors don't like that. Also it confuses them that we could feel so bad but have any intelligence left or talk at all.
The larger issue here is that unless a doctor has gone off on his own and studied ILADS, they are not allowed to have an independent thought. they must adhere to the guidelines of their professional group. Rheumatologist simply do not believe in lyme anymore than do the ID or neurologists.
For some, if they do question or treat outside of the IDSA guidelines, they could lose their jobs with their clinic group. Most will not risk that - and they should not have to be so tied down, but that is the system. I hope you can connect with a doctor who has studied well in this area.
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Steroids are bad for the main reason that lyme can blossom.
Caveat: if a life-threatening situation arises for which steroids would be life saving, abx with them would be necessary - and 48 hours prior if possible, but best to get advice from a LLMD on that. that is just what I recall.
Steroids may well make the tests inaccurate, but the main reason is that once steroids are taken, lyme becomes VERY difficult to treat.
(Edit to add: However, if a treatment masks the disease so that proper testing can't be done that, too, is a huge injustice to the patient. I should have not glossed over that.)
See Dr. B.'s notes below. You can find the original of the most recent guidelines at www.ilads.org
-----------------------------------------------
some of this is from his guidelines, but some may be from a previous post here at LymeNet.
In 2000 Dr. B's Lyme treatment guide said "More evidence has accumulated indicating the severe detrimental effects of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course." ---------------------------------
B's 2005 Lyme guide says "The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections.
These factors also are proportional to the intensity and duration of treatment needed for recovery.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids.
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
[ 30. October 2007, 12:31 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
You are right about much more of the important things than your rheumie.
The western blot does measure antibody response, and NOT actual bacteria. Silly rheumatologist.
Though, the antibodies themselves do have surface proteins.
However, these points are academic in view of the fact that you have a CDC positive blot and symptoms indicative of lyme.
I'm sure she's nice but she really needs to do some reading. NOT the IDSA's idea of reading, either. I'm thankful you have an LLMD!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Lily,
Do you have a rheumatic disorder like rheumatoid arthritis?
I have RA and it was definitely caused by bacterial infections. I absolutely believe I can be cured.
For one year, I worked with a wonderful family practice MD and was monitored by a rheumy who believed lyme caused my RA but did not believe I still have lyme. He just thinks I am left with the auto immune disorder. Permanently.
The only contribution the rheumy made was monitoring progress and 100mg Minocin 3 x weekly. This is a low dose antibiotic protocol for mycoplasmas. You can learn more about it at www.roadback.org. The rheumy did not beleive in it and wanted to put me on methotrexate. He only prescribed the mino to appease me and I refused the MTX for the very reasons you are listing now.
I made great strides with the family practice MD who was a member of ACAM and identified and treated my leaky gut, yeast, heavy metals. His tests showed I had parasites and bacteria as well but he did not want to use abx which he believes drive the bugs inward. He wanted to clear my body of toxins, heal my gut to stop pathogens from entering into my bloodstream and let my immune system clear the bacteria and parasites.
In one year, I went from a high moderate RA to a weak positive. The rheumy was stunned at my progress and reluctantly admitted it must be working because I was nearly dormant.
Then this past May, I was bit again. I am certain I found the tick before 24 hrs had elapsed. It was not a deertick and was not engorged so I felt safe. 24hrs later I began to feel flulike symptoms and 48hrs later I was sicker than ever. All my joints flared and my left wrist (which had been the most problematic joint all along) swelled very badly and the pain was excrutiating.
Since I knew this was a recent bite, I wanted to tackle it with abx, so I found an ILADS LLMD who is also a rheumatologist. What a Godsend!
First thing I was told is that it has been this doctor's experience that until we heal the gut and clear the body of metals, parasites, etc, there is no point going after the lyme.
I was shocked and pleased to hear that. She was pleased to hear all I had been doing. She ran bloodtest that showed Babs, H.Pylori, QFever, EBV and tapeworms. My adrenals were flat and according to her, we can do nothing until the adrenals are working. Also food allergy to milk and soy proteins.
I stopped eating diary and soy and that brought about immediate reduction of joint pain. She began supplementing the adrenals and my fatigue went away.
Then she started the abx for H. Pylori. Now, I moved right into full remission. All told this took about 30 days.
Unfortunately, the left wrist that had blown up so badly after the tick bite, incurred cartledge damage. MRI revealed it is too far damaged to repair. We are now just waiting to see if the wrist will fuse itself, or will I need surgical fusion.
And, against all my pleas, she has put me on Methotrexate and Humira. She says when she goes after the babesia, it will flare my joints and damage will occur if I don't take these drugs.
Obviously, I prefer to do things naturally and feel these two drugs are just poison. But she is the expert, not me. She has certainly done me right so far, so I am taking the two immune suppressing drugs.
I'm sharing this with you to let you know that sometimes a lyme literate member of ILADS who also is highly trained in rheumatic diseases, will use immune suppressing drugs WHILE also on abx.
I do have rheumatoid arthritis. I have great hope that someday I will no longer have RA. Until that time though, I am in danger of crippling joint damage.
You might want to find a doctor who understands lyme and rheumatic disease.
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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No, I do not have a rheumatic disorder. Well, according to my Rheumy, I may have Still's Disease. However, she can't confirm this.
I originally was dealing with a Rheumy this summer since my main symptom was joint pain. However, all of my tests (ANA, RA...) are negative. Still, she convinced me before the Lyme diagnosis to take prednisone. My joints were so bad, hubby was carrying me from room to room and brushing my hair. The prednisone took all of the pain away!
Well, I'm off the prednisone and I have a Lyme diagnosis and positive test results. I have no pain...it all went away. She still doubts Lyme. Hmmm...
quote:Originally posted by Lymetoo: Lose the rheumie.
I keep her around becasue she orders whatever test I want...and she cares. She just plain does not get it. Still, she is the only doctor that I have right now. My LLMD is many states away.
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