posted
I've just become aware that an aquaintance, who was diagnosed with MS in September 2010, is now weelchair-bound.
She has brain and spine lesions. She receives strong steroids every 3 months to take rpessure off of her spine.
Her family is in the process of raising money for a surgery labeled CCSVI.
She's 26, has 2 young children and is suffering. She lives in Michigan, which is where I lived when I contracted LD. I don't know if she has been tested for LD, but I assume she has had the basic crap tests done.
I feel strongly that I should point her and her family in a direction that would enable them to learn more about LD and how it is often misdiagnosed as MS.
That said, I'm not knowledgable enough to do so and I have no idea in which direction to point them. I've been in my own LD hell and while I'm treating and learning, I'm not ready to teach others, if that makes any sense.
So, what, if anything would you do? Specific links or books that I could recommend?
I want to help but am not sure my best course of action.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi MamaMelvis, I would talk to her and her family about Lyme disease. Just tell them your concerns and also hook them up to this web-site (lymenet.org)to ask questions.
If she does have lyme disease those steroids are going to put her in a very bad place! Ask how she feels after taking the steroids...
Let us know how you make out.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A lot depends on what state she live in. If the doctors are ignorant about lyme, likely it's not going to do much good if the MS patients just keep asking the MS doctors about it.
My best childhood friend is in the same situation and I've mentioned this and sent details. But, she just kept saying that her doctors see the lesions on the MRI and it's clearly classic MS.
She's been using the MS drugs for years and has just gotten worse. Still, I had to drop it and accept that it's her choice to pursue the information or not.
A couple times when she'd been hospitalized with IV antibiotics for lung infections, she got miraculously better - until home and the IV stopped. Still, she was told that is just the way MS works sometimes.
And other infections can cause "MS" besides lyme. Cpn is one of those. See www.cpnhelp.org
Every MS patient should see that Cpn site for, often, Cpn goes along with lyme and both need to be addressed, just same as all tick-borne infections and other chronic stealth infections such as HHV-6 need to be considered.
Mercury and other heavy metal toxicity, too, can be to blame, or at least part of the problem.
But, the bottom line is all you can do is share professional literature and a few words - or offer to help find a LLMD for a consult.
Cpn Help (Chlamydia Pneumonia) - be sure to see the physician links at the tip top of the page and see the MS literature.
Testing needs to be done by a specific method and not all labs do the right testing.
It may be easier to find a doctor to treat Cpn than lyme but Cpn still has nearly as much resistance from the regular medical world who doesn't like to look out of their steroid treatments. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
16th edition, Copyright October, 2008
Joseph J. Burrascano
Excerpts:
P. 4:
. . . 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:
. . . 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). . . .
. . . "Steroid Disaster" is a term coined by the pioneer of Lyme Treatment . . .
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.
- full article at link above.
=========================
[poster's note below]
Low Dose Cortef to help adrenal repair:
However, temporary use of very LOW (sub-clinical) dose hydrocortisone (Cortef) has been used as the last resort for lyme patients close to adrenal failure.
The adrenals (and the entire endocrine system) really takes a hit with lyme. Adrenal failure can become fatal so, if nothing else is working, Cortef can be a life-saver - or prevent a patient from reaching a critical stage.
Under the care of a LLMD, this can give the adrenals enough of a rest in order to start healing. However, usually adrenal support measures known as adaptogens are first tried. For most, adaptogen support is enough (along with good self-care).
Those include Eleutherococcus senticosus, Ashwagandha, Cordyceps or Rhodiola (starting slowing with a low dose as that can be too stimulating for some patients -- and too much stimulation is damaging to adrenals). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
In the late 1940s, the steroid cortisone, an anti-inflammatory drug, was first synthesized and hailed as a landmark. It soon became a safe, reliable means to treat the pain and inflammation associated with sports injuries (as well as other conditions).
Cortisone shots became one of the preferred treatments for overuse injuries of tendons, like tennis elbow or an aching Achilles, which had been notoriously resistant to treatment. The shots were quite effective, providing rapid relief of pain.
Then came the earliest clinical trials, including one, published in 1954, that raised incipient doubts about cortisone's powers. In that early experiment, more than half the patients who received a cortisone shot for tennis elbow or other tendon pain suffered a relapse of the injury within six months. . . .
. . . But a major new review article, published last Friday in The Lancet, should revive and intensify the doubts about cortisone's efficacy. The review examined the results of nearly four dozen randomized trials, which enrolled thousands of people with tendon injuries, particularly tennis elbow, but also shoulder and Achilles-tendon pain.
The reviewers determined that, for most of those who suffered from tennis elbow, cortisone injections did, as promised, bring fast and significant pain relief, compared with doing nothing or following a regimen of physical therapy. The pain relief could last for weeks.
But when the patients were re-examined at 6 and 12 months, the results were substantially different. Overall, people who received cortisone shots had a much lower rate of full recovery than those who did nothing or who underwent physical therapy.
They also had a 63 percent higher risk of relapse than people who adopted the time-honored wait-and-see approach.
The evidence for cortisone as a treatment for other aching tendons, like sore shoulders and Achilles-tendon pain, was slight and conflicting, the review found. But in terms of tennis elbow, the shots seemed to actually be counterproductive. . . .
. . . The injections seem to have ``an effect on the neural receptors'' involved in creating the pain in the sore tendon, Dr. Khan said. ``They change the pain biology in the short term.''
But, he said, cortisone shots do ``not heal the structural damage'' underlying the pain. Instead, they actually ``impede the structural healing.'' . . . -
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Symptoms of chronic involvement of the peripheral nervous system in a series of patients with chronic neurologic manifestations of Lyme disease developed a median of 16 months after the onset of infection, while CNS involvement began a median of 26 months after the onset of disease.
CONTROVERSIES IN NEUROBORRELIOSIS
Audrey Stein Goldings, M.D.
Updated October, 2002
The objectives of this article are to cover issues related to Lyme disease that are not even-handedly addressed in the current literature. It will:
1 Present a practical approach for making the diagnosis of neuroborreliosis . . .
3 Discuss the relationship between MS and Lyme . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
(you can purchase for $35 at the site or see if you local lyme support group has a copy to lend.) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I worked with someone who later was diagnosed with MS. He had a vacation house on Nantucket, a known area of lyme concentration. When I mentioned lyme to him, he said his doctors were confident that he had MS. End of discussion.
Sometimes you can try but fail because the ears and brain of the listener are closed. And I am always nervous about encouraging people who are in very bad shape to go to lyme docs. These are basket cases and very hard to treat. So, if the person isn't already totally convinced, they don't get well immediately, then they doubt the diagnosis and treatment, maybe even sue.
Sad to say that there are such considerations when trying to decide whether to help someone.
My own feeling is that if people are not already out looking for alternatives, they may not be interested in hearing yours. Unquestioning people without a lot of drive will not be good candidates for a lyme diagnosis.
That being said, I still try to help people with various health problems that are not being handled well by the medical establishment. Mostly I strike out.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Sadly, lou is right. But there's always hope for that starfish you save.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about: ----------
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
CCSVI is for anyone with lesions, no matter what the cause...I had it done in Nov. 2010... It helps tremendously since the Chronic CereberalSpinal Venous Insufficency means brain blood, not draining properly.
I feel all the toxins of Bb - if not draining properly build up in brain, & cause inflammation thus more neuro whether cognitive, neuromuscular, vision troubles etc.
CCSVI is throwing the so-called MS worldon its ear.
I had stenosis (narrowing) in both jugulars & the azygous veins. Mine were 50% narrowed. My husband thought "what's the big deal" but the body made new vein branches to go around the narrowed spots. (called collaterals)
Yes, push for proper lyme testing but don't disuade from CCSVI.
BTW since it is a vascular problem with evidence by ultra-sound, insurance paid for it. That is how it is coded, not for "MS".
Posts: 2675 | From ct, usa | Registered: Jan 2004
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