posted
Been treated with IVIg threapy for immune system ? If so why? Was it because of one of the IgG subclasses being low or was the total IgG low or both?
Thanks...
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
The new LLMD I'm seeing this week employs this treatment but from what I've heard it can be enormously expensive if you don't meet certain criteria.....is that true?
The book "Cure Unknown" mentions how this method helped a very sick lyme patient I believe...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
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I don't believe it - I actually saved it in a logical place in my file.
Normally, we don't publish doctor's names. However, authors and published interviews are already public knowledge (and, obviously, with the doctors' knowledge).
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Note: one error in article below: " . . .Most people with advanced, neurological Lyme disease get better after four weeks of intravenous antibiotics. . . ." According to ILADS' researchers, this statement is not correct. Some do. Some don't.
What do you call a headache that lasts five years? Andy Eckl of Trumbull, Conn., came down with a skull-splitter in 1997, when he was 5 years old, and he got no relief until he was 10.
He muscled through first and second grade on Advil, but by third grade the pain had spread to his joints, and by fifth grade it had taken over his life. "The other kids were all learning how to throw and catch," his mom, Nancy, recalls.
"Andy could barely walk." Suspecting migraines, family doctors prescribed Maxalt and moved on to Neurontin and Depakote (anticonvulsants that some patients find helpful), but nothing made much difference.
Finally, a homeopath advised the parents to get Andy tested for Lyme disease. The results were negative--but blood tests can't rule out Lyme, so an infectious-disease specialist prescribed antibiotics anyway.
Andy got his first dose on Nov. 11, 2002, and by Nov. 16 the pain had lifted. The headache from hell wasn't a migraine after all. Chances are, the whole thing was caused by a tick bite.
Lyme disease is nothing unusual in places like Trumbull. Every summer brings an onslaught of new cases as ticks spread the bacterium Borrelia burgdorferi from birds, mice and chipmunks into people (deer carry ticks but they don't get the infection).
In its classic form, Lyme starts with a bull's-eye rash and causes a flu-like illness that responds quickly to oral antibiotics. But experts are now developing a far scarier picture of Lyme disease.
When the infection goes unrecognized--or doesn't respond to treatment--it can become a chronic and devastating neurological condition. Some patients are hobbled by fatigue and arthritis, others by depression or anxiety.
Still others suffer memory loss or even psychosis. "Lyme disease is the new 'great imitator'," says Dr. Brian Fallon of Columbia University and the New York State Psychiatric Institute. That's the term doctors once used to describe syphilis when it caused psychiatric illness.
Like the syphilis bacterium, the Lyme microbe can escape the bloodstream through vessel walls and invade the heart, brain and nervous system, where it causes persistent inflammation. Fallon is now using nuclear imaging techniques to gauge the effects on patients' brains.
Viewed through an MRI scanner, some of them display lesions typical of multiple sclerosis.
Other tests, known as PET and SPECT, reveal uneven blood flow and glucose metabolism--a common sign of vascular inflammation. "You don't see that in a healthy brain," Fallon says. "It's associated with conditions like lupus, HIV and chronic cocaine abuse."
No one knows exactly how Borrelia burgdorferi causes all this trouble. It's possible that some patients remain chronically infected, while others suffer from persistent inflammation after the infection itself is gone.
And each type of patient may need a different type of care.
Most people with advanced, neurological Lyme disease get better after four weeks of intravenous antibiotics, but some 40 percent either fail that regimen or relapse after responding to it.
Alice Levitt got sick at the age of 11 while growing up in Greenwich, Conn., and suffered for five years before she was diagnosed in 1997.
After six years of failed antibiotic therapy, she had the good fortune to meet Dr. Amiram Katz, a Yale neurologist with a private practice in Orange, Conn.
Katz used an experimental regimen of intravenous immunoglobulins (naturally occurring antibodies) to tame her overzealous immune system, and within a month Levitt had her life back.
Now 23, she lives in Essex, Vt., where she is working for a theater company and writing a musical comedy. "I've ended up in such a good place," she says.
That should encourage anyone haunted by the new great imitator. Unfortunately, many sufferers still don't know they have Lyme.
posted
Funny my LLMD thinks I should go see Doc K as even though he is not autonomic neurologist my llmd basically implies he like puzzles and THINKS OUT OF THE BOX....
As I have mentioned in a chat last night Dr S uses this threapy right in his office/complex...
I belong to another chat where this threapy is used for a lung disease...
Don't understand why some of these treatments aren't more prevalant amoungst immune supressed individuals.....AHHHHH
Thanks for the posts especially about DOC K....He doesn't take insurance that's why I delayed but like I said after Beth Israel I maybe going to see him. Now if you didn't post that Dear Keebler about K.....how would I have ever known????
Was the 10k out of pocket? Of course it's not only used for lyme immunological threapy...This maybe what the eye doc I saw in MA was referring to when he said I may need immune supressant threapy but wonder if it's the same.
Immune supressant may be chemo, steriods where this IVIg not sure if it is supressant or the same theory?????
[ 01. September 2008, 11:05 AM: Message edited by: Raymond ]
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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"autonomic" neurologists are not necessary going to help.
I had a specialist say, "Yep, you seem to pass out when your heart rate goes up. I don't know WHAT to do with you! I don't have time for this."
Lyme causes all sorts of problems that just leave most doctors shaking their heads and treating symptoms rather than the cause.
Find out if you may have lyme. If a LLMD does not think so, then explore other avenues. If lyme is present (or another chronic stealth infection), chances are good that many symptoms can be resolved if the underlying reason is addressed.
For now, adding sea salt to your diet might help as well as reading what Singleton says about the endocrine system and cardiac function.
good luck.
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This book, by an ILADS member LLMD, has a lot of good information:
posted
My symptoms are such where they may not be related to all autonomic system...that could only be one piece, immune system, vascular system etc... seems to me.
That's what I'm in it for....hopefully answers..treatment
LLMD wants retest after 6 months first tests were
My bloods were as follows.. IgG 31+ 34Ind 39++ 41+++ 83-93IND IgM 23-25IND 41IND 66+ (Funny these are the first mentiond by Doc D no?
Go for retest next week. cd57- 42 cd8-3
Been exposed to lyme but like I said I have an uncurable lung disease associated wit immune defiency, possible type of mycobacterium. Maybe IVIg needed. Body maybe getting hit by to much at once. Was also exposed to west nile virus, EBV like most so....
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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While some (many?) cases of CFS might be undiagnosed lyme, this information may be helpful to patients across the board. Lyme affects many patients with cardiac symptoms such as described here.
Even if from lyme, it helps us understand how better to take care of ourselves while seeking treatment/resolution.
Cardiac Insufficiency Hypothesis - article and many links, including to: Pittler MH, Schmidt K, Ernst E., Hawthorn extract for treating chronic heart failure: meta-analysis of randomized trials. Am J Med. 2003 Jun 1;114(8):665-74. [PDF Format]
VIDEO: A three-hour talk by Dr. Cheney on diastolic cardiomyopathy and ME/CFS.
CFS and Diastolic Cardiomyopathy - Paul Cheney, M.D., Ph.D.
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New Research on Cardiac Insufficiency
several articles
There is new research from a New Jersey team, authored by Doctors Arnold Peckerman, Benjamin Natelson et al., which found left-ventricular dysfunction following exertion and orthostatic stress in patients with myalgic encephalomyelitis/chronic fatigue syndrome.
The WedMD article and the press release are available at the link below. In an NIH-funded study on impedance cardiography also linked below, Peckerman and Natelson found that low cardiac output correlated with symptom severity in ME/CFS.
Dr. A. Martin Lerner . . . Viral infection persists in the heart, causing left-ventricular dysfunction, producing exercise intolerance. Exercise, in turn, worsens the cardiac dysfunction. . . .
More recently, physicist, physician, long-time ME/CFS researcher and clinician, and heart-transplant recipient Paul Cheney, M.D., Ph.D., has offered an alternative theory that a subset of ME/CFS patients suffer from a diastolic cardiomyopathy, a problem with ventricular filling resulting from mitochondrial dysfunction and low ATP energy in the heart.
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Again, presented not to sadden, but if there is a dysfunction, treatment for underlying infections and employing support measures can make a difference.
the link to the Hawthorn research above holds hope. I feel so much better when I take that.
posted
One reason that IVIG is used is to treat autoimmune disorders.
The theory behind using it in lyme disease is that some people have developed an autoimmune issue due to the antibody for OspA mistaking the myelin that covers our nerves for the borrelia outer surface protein A.
The IVIG appears to block the OspA antibodies from reacting with the myelin.
It is very pricey at $10,000 - $20,000. Apparently if you do a skin biopsy, and it shows a shortage of nerve fibers and if damage can be documented with nerve conduction studies...then insurance should pick up the bill.
This is paraphrased from Cure Unknown.
It also says that IDSA has included IVIG on the list of therapies to be avoided in chronic lyme.
(OspA is represented by band #31, which I have a ++++, and I also brain lesions and numerous neurological symptoms)..all coincidental???
posted
My husband has been receiving IVIG for Lyme induced myositis for about nine months now. It has definitely helped with his muscles which were wasting away.
I believe that it's helping overall with his immune system and fighting Lyme but it hasn't been an instant silver bullet. In addition, he's also doing IV Rocephin, IV Flagyl, malarone, etc.,
Posts: 984 | From San Diego | Registered: Nov 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Raymond,
you wrote: " . . .Immune supressant may be chemo, steriods where this IVIg not sure if it is supressant or the same theory????? . . ."
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You do know that steroids - in the presence of lyme or other infections - require specific EXPERT advice. I hope you can consult and be evaluated by a LLMD.
posted
Never leave home without it Keebler. Before they were going to inject steroids in eye had them call LLMD..
I have many symptoms which I often think confuse LLMD...
Told you brown saliva, coffee grounds...eyeball swells personally don't think as cut and dry as lyme... If I mention symptoms I expect to be referred, no. At times my mouth bleeds when I eat...inflammation, head gets warm when I lay down....haven't been able to take a nap for awhile...inflammation???
That's why I am in contact with Pulm unit at NYU, doc at BI. I inform LLMD he reminds me they don't know much about lyme...
The unfortunate thing is I don't know much about what else I have going on... Know west nile, know exposed to lyme and know lung disease and symptoms and lots of inflammation...Need proactive,
Some people like I said with my lung disease get IVIg. Don't think LLMD believes in it.
If I knew for sure I had ATYPICAL symptoms of lyme....well alright brochiectasis has to be treated with ABs or anti fungal meds and the ABs and anti fungal meds can be different because not all ABs or anti fungal meds work on all strains...but it is caused by a few things, genetic (not me)immune system compromised...
I read something to today doc at BI may, that's a may agree with MP...
Don't think he a dummy but as we know some docs think lyme overdiagnosed, some don't. I'm just hoping to get definitions.
I'm dazed and confused and admit it but if I plan on getting better what am I to do? I listen.
Keebler isn't autonomic neuropathy have to do with nerve conduction?
[ 01. September 2008, 06:35 PM: Message edited by: Raymond ]
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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posted
Autonomic neuropathy is caused by damage to the nerves that regulate your heart rate, blood pressure, perspiration and digestion, among other functions. Neuropathy means damage to your nerves.
Autonomic neuropathy is are often due to diabetes, autoimmune diseases, infections or toxic conditions. Your nerves transmit messages between your brain and your organs. Damage to your autonomic nerves results in faulty communication with your brain and the affected parts of the body .
Close call WITH AUTONOMIC PROBLEM? Not sure. Now remember I'm taking it leaning it in my direction..Ammo is knowledge...whether applies or not...
What's interesting is how far can we take the expieremental stage...
And yes I believe it is an immune supressant threapy...There are several known mechanisms of immune suppression with IVIG, although the relative importance of each in various diseases is still a matter of debate.
And this is what one of the "best doctors in America" said I need......Like I said wish everything was that simple for all of us....burdened with any life altering affliction...
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
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