posted
My first Lyme/tick test results were negative (ELISA test after 10 days Doxy, so after 21 days of Doxy I've been referred to numerous 'specialists.' No-one can find anything.
This week Neurologist put me on 5 days Prednisone and 3 days painkiller just to try to knock out the headaches. Instead it has only increased the pain in my limbs (muscles and joints).
I've been researching to find a LLMD in my area, but before setting up an appointment I'd like to be sure prednisone won't affect a Western Blot. Anyone have any guesses for me?
Thanks. I've loved looking at this site and checking out the various links over the last couple weeks since I found it! You're greatly helping to empower me and believe I can beat this. Posts: 13 | From Wisconsin | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Did you by chance have a rash after a recent tick bite (not everyone gets a rash but a bulls eye can be a tell-tell sign)?
How long do you think you've been dealing with this?
ELISAs are a horrible test. You've not really been tested for lyme if you had an ELISA.
Are you NOW on prednisone? Seems, you are - for how many more days to total 5, no more, right?
That neurologist should know better than give anyone who might have lyme a steroid such as prednisone.
You need to find to a LLMD now. Yes, they should know about the steroids and yes, it could make a difference not just in the test but in making lyme much worse. You need a good treatment to get onto now.
When you find a LLMD, be sure to ask to talk with the nurse and explain that you are now on prednisone. Ask for suggestions of what to do now while you wait to get in.
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 intraarticular steroids.
. . . .
From page 12:
Excerpt:
. . .
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 at least 48 hours prior to the immunosuppressants.
. . . .
Page 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example).
From: Lyme Disease 1991: Patient/Physician Perspectives from the U.S. and Canada - Lora Mermin, editor
by John Drulle, M.
Excerpt:
. . .
"Steroid Disaster" is a term coined by the pioneer of Lyme Treatment, Dr. Burrascano (see link at bottom of page).
Corticosteroids are immune suppressants, the last thing a Lyme patient needs is to lower immunity.
Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants .
Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.
Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.
It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.
Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix!
. . .
Dr. Burrascano makes it clear in his treatment guidelines that steroid treatment is detrimental, these are excerpts from his guidelines:
"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 at least 48 hours prior to the immunosuppressants.
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, immunosuppressants medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressants medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids."
An easy explanation. Your immune system are the "soldiers" of your body constantly standing by to attack any foreign invader.
When an immunosuppressant is used, it is like killing off or knocking out most of your "soldiers", now your body is open to all foreign invasion and while your immune system is knocked out, those invaders can go anywhere, your heart, liver, brain - everywhere.
. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
-===========
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
Be sure to read the full post - it's very long and a great help.
Excerpt:
. . . "With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years. Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UOS wins top award at International Health Film Festival
UNDER OUR SKIN was just awarded ``Best Feature Film-Silver Award'' at the 1st International Health Film Festival in Kos, Greece. The tiny island in the eastern Aegean sea was the home to Hippocrates, father of medicine. Over 80 films competed and were juried by industry professionals as well as physicians. -
[ 10-22-2009, 08:22 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you! With the increase in pain after starting Prednisone on Monday (only tomorrow left) I didn't think it could possibly be doing me any good.
I have the name of a good LLMD and one word-of-mouth referral...however, patient also says he's no longer taking new patients. Have ordered the Under Our Skin DVD and hope to share with my general prac. Am wondering if LLMD and my local Dr might be able to work via consult. Just not certain which route to go first. Have jumped through all the hoops with referrals and gotten nowhere. Now it's time for me to be in charge.
Posts: 13 | From Wisconsin | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you want to be in charge, go to the expert, the LLMD. Your GP may be able to work with you but you need someone with knowledge and experience NOW.
If your GP had been on his/her toes, what in the world were you doing at a neurologists who prescribed steroids for a possible lyme patient, for crying out loud. Your GP is supposed to protect you from that - so he obviously is not lyme literate. True, not every doctor can know everything and your doctor may be interesting in learning but I hope you don't have to teach him in order to get care.
If that LLMD is no longer taking patients, call anyway. Explain your situation and ask if they can suggest another doctor. Also ask if there may be a time soon when they will have room for a new patient and could you be put on that list?
Talk to people in your local support group and all the support groups within a radius that you could travel - or where friends of family live with whom you could stay with while there.
Good luck. -
[ 10-22-2009, 11:20 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would call and ask on the pred. Most lyme
patients get worse on treatment so this may be a
good time to plan ahead just in case. Ready to
eat meals. Electrolyte replacement drinks.
Someone to help out if you get down like a lot of
patients do upon initiating treatment. I will
tell you strait up this illness is one bad bug.
Things to replace sugar, like stevia products. I
love lemon aid made with half a lemon and stevia
and ice. Epsom salts alternating with Baking soda
for soaks. Vitamin suppliments to improve your
fighting ability. Foods to increase Alkalinity.
Most Lymies are acid. Just some suggestions. Hope you
find a great LLMD to help.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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