posted
I'm sure this has probably been discussed, but has anyone gone through all of the testing (EMG's, nerve conduction velocity testing...etc) and still diagnosed with ALS? My 12-year old niece lays in a hospital on a respirator and only 10-months ago, she was an active little girl. The symptoms didn't progress in true-ALS fashion. It began on her left side and then, after several weeks of steroids, she worsened. She's been on 2 g. Rocephin for 16 days and 1 g. Glutathione for 18 days. I am desperately searchng for anyone with similar symptoms and diagnosis. Thank you.
posted
Yes, there is a link of lyme to als-like symptoms. Lyme and "ALS" are both neurological diseases, except lyme is multisystem in some people. The expression of symptoms varies a lot between patients, especially at the beginning.
Some people have done the whole testing thing, been told by big name institutions like Johns Hopkins that they had ALS. But then they went on to respond well to treatment for lyme. However, it is usually an extended treatment. No quick cures in this.
You told us previously that Dr. J was treating her for lyme. Are you questioning this diagnosis? Maybe because 2+ weeks of rocephin have not cured her? This is a disease that demands patience in patients (and their worried relatives).
If your niece is on rocephin, this is a good start. Is she taking actigall? Some docs prescribe this along with rocephin which can cause gallbladder sludging.
If you want, I can round up some medical journal abstracts, etc, however there is previous info in lymenet archives. Here is one previous thread:
posted
I've been through similar and heard of many like situations. Why did they decide to give her abx? That is not something you give to someone that has ALS. Of course, it appears what happened is they misdxed her from the beginning and gave her steroids, worsening the problem. Maybe they have now decided she has a bacterial infection that they failed to test for in the begining.
There are many cases of total paralysis overcome with enough antibotics over enough time. Many of those have been dxed with lyme. There may be other diseases that can cause it as well, I just don't know which ones she may have come in contact with.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Mike,I am so sorry.
There are people who have been diagnosed with ALS who were then found to have Lyme disease and when treated improved hugely, even to seeming recovery. I have not heard of children with ALS diagnosis.
I am glad to hear they are giving your niece Rocephin IV as it is a very powerful treatment for Lyme disease and crosses the blood-brain barrier.
If it is Lyme disease, use of steroids would not help, but would cause the disease to progress faster as the spirochetes grow on steroids.
Tests for Lyme disease probably wouldn't be reliable (they aren't in any case)but if they are willing to do them, insist that they do the western-blot.
You will find the FDA paper on Lyme tests and good labs and lots more info links on my website - address below my name.
I hope you will get a response from someone who has had or has seen a child in similar condition.
Sending all best thoughts and wishes for her recovery.
posted
I so much appreciate all of you who replied. I trust Dr. Jones, but the problem is that her breathing is getting so bad and her parets disagree on a diagnosis. Dad thinks it's ALS and mom feels it could be Lymes. The hospital where she has been at is a small town hospital and they've just been giving her anti-anxiety drugs and drugs for schitzophrenics. Anyway, what I "really" needed was assurance that someone out there did have EMGs and nerve conduction velocity testing done that had the conclustion of motor neuron disease/ALS.
posted
She is about due for a herxheimer reaction, which will have to be monitored carefully, considering her fragile condition. This is when you have to have backup for the small town hospital folks, who will not have a clue how to manage a herx or even know what it is.
If her breathing is getting worse, this could be a clue of a herx beginning. They will need to get Dr. J's advice on this, he may have the treatment stopped temporarily.
You might want to go to the newby links, copy off the herxheimer descriptions and email those to the parents. The hospital people will be able to find this info for other spirochetal diseases in their books about relapsing fever and syphilis; however, the timing is different in lyme and the lyme herxheimer is not as well documented in the literature as are those older diseases.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
She is only 12 yrs? I think I would insist on a wilson's disease work up...It's rare but has the presentation you describe. Ask about the kayser- fliecher rings (copper accumulates in the iris) basisally it's an inherited inability to metabolise copper in the liver and brain (presents like als when brain is affected) Parents could be tested for the gene...kt
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
I have ALS symptoms and do not have bartonella, but I do agree that co-infections need to be looked for when she is in better shape.
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bettyg
Unregistered
posted
Welcome Mike from 1 Iowan to another... breaking this up for us neuro brain lymies to read. I'm so sorry to read this Mike; it breaks my heart.
Have you tried Des Moines' Blank Children's Hospital with all the variety club money we have raised to make sure they don't have any "lyme literate MDs" there now? Worth a try.
quote:Originally posted by mikej2323:
I'm sure this has probably been discussed, but has anyone gone through all of the testing (EMG's, nerve conduction velocity testing...etc) and still diagnosed with ALS? My 12-year old niece lays in a hospital on a respirator and only 10-months ago, she was an active little girl.
The symptoms didn't progress in true-ALS fashion. It began on her left side and then, after several weeks of steroids, she worsened.
She's been on 2 g. Rocephin for 16 days and 1 g. Glutathione for 18 days . I am desperately searchng for anyone with similar symptoms and diagnosis. Thank you.
Mike, I'm going to NIH, www.medlineplus.org to check it out. If I can find something else, I'll get back on here & paste what I can find.
Mike, here is my other newbie links for you too. Look at TREEPATROL'S NEWBIE LINKS; print it off...see if ALS/children are listed on there. Tree does an outstandng job of adding to info he makes available to all.
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bettyg
Unregistered
posted
Mike, here is 1 page shown there with many difference links including an ALS dictionary, etc. Thought if you hadn't seen all these sites, perhaps you might find something to help you.
Mike, may I ask your niece's 1st name so I may put her in my thoughts/nightly prayers? May God watch over her/family during this very difficult time for the entire family.
Glad to se you are advocating for the family. I too have never heard of ALS in young children.
I too never heard of early-onset Alzheimer's until my late sister-in-law got it, and died at age 40, 13 years today!
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Chronic Lyme disease debate: Common ailment or false hope?
By BILL RADFORD - THE GAZETTE
Like the flu, it hit hard and fast.
But Dr. David Martz knew whatever he had was worse than the flu.
"My whole body hurt, and I could hardly get out of bed and I could hardly walk," he said. "I knew something real serious was wrong."
He fell ill in April 2003. He was hospitalized for two weeks and underwent, he said, "every test known to man." Weeks and months went by as his condition deteriorated, and the search for answers continued.
The answer, when it came, was frightening: ALS, also known as Lou Gehrig's disease, a progressive neurological disease that attacks nerve cells responsible for controlling voluntary muscles. You'll probably be in a wheelchair in six months, Martz was told, and dead in two years.
A newspaper clipping sent to him by a family friend gave him a possible alternative diagnosis: chronic Lyme disease. And it put him in the middle of what is being called the Lyme Wars, a debate over the true threat posed by Lyme disease.
Lyme disease is a tick-borne infection most prevalent in the northeastern United States. Mainstream medicine regards it as generally simple to recognize and easy to treat with a few weeks of antibiotics. But some doctors view Lyme disease as something more common and more insidious, often hiding in the body and manifesting as a chronic infection requiring months or years of intensive antibiotic treatment.
They regard Lyme disease as a "great impostor," accounting for some cases of chronic fatigue syndrome, fibromyalgia, Gulf War syndrome and other illnesses with often vague and confusing symptoms.
Martz, who has largely recovered after long-term antibiotic therapy, is a believer - so much so that the Colorado Springs doctor started a practice focused on chronic Lyme disease. A past president of the Colorado Medical Society and the El Paso County Medical Society, the 65-year-old Martz now finds himself on medicine's fringes.
The debate boils down to hope. Are patients diagnosed with chronic Lyme disease being given false hope and wasting money on years of treatment? Or are doctors who don't believe in the condition denying ill and often desperate patients hope when there could be some?
"Rather than close the mind, where's the harm in saying maybe there's another dimension to it?" Martz said. "Let's think out of the box, as the saying goes, and stay open to the possibility that maybe this is more complicated than we realized."
DECLINE AND RECOVERY
Martz grew up in smalltown Illinois and moved with his family to Las Animas, in the Arkansas Valley, in 1956. His father, a Baptist minister, wanted him to follow in his footsteps. But Martz, seeking to combine his scientific interests with a humanitarian bent, chose medicine as a career.
A 1965 graduate of the University of Colorado Medical School in Denver, he moved to Colorado Springs in 1970 and over the decades practiced internal medicine, oncology and hematology. He was a hospice medical director and part-time hospitalist when he fell ill.
The initial diagnosis was a motor-neuron disease of unknown cause, possibly ALS. Lyme disease was considered, but blood samples sent to the Mayo Clinic were negative for Borrelia burgdorferi, the corkscrew-shaped bacterium that causes Lyme. One doctor put him on a month of antibiotics as a treatment for Lyme anyway, but it didn't help.
His legs became weaker, and symptoms spread to his hands and shoulders.
"He fairly quickly was unable to rise from a chair by himself or fully dress himself," said Martz's wife, Dee.
He met all the clinical criteria for amyotrophic lateral sclerosis, or ALS. It's a disease that's difficult to diagnose in the early stages. There is no one test or procedure to establish the diagnosis. And there is no cure.
Dee Martz, a licensed professional counselor, had lost her previous husband to a fast-moving cancer. This would be slower. David Martz's muscles would waste away, but his mind would stay clear, trapped in an increasingly paralyzed body.
"The reality of what life would look like with ALS was very stark," Dee Martz said.
The newspaper article David Martz received offered a sliver of hope. It quoted a Lyme specialist saying the usual tests are inaccurate; more sensitive testing is required.
So Martz turned to a laboratory known for that specialized testing, IGeneX Inc., in Palo Alto, Calif. A conventional antibody test came back negative. But IGeneX also did a urine test, using a method questioned by federal health agencies in a warning last year against testing that hasn't been validated. It was positive. Martz became a patient of Dr. William Harvey, a Lyme specialist in Texas. He began intravenous antibiotic therapy in January 2004.
By then, Martz said, he was "basically homebound."
"I could walk maybe a hundred yards. I could stand only five minutes, at which point I would begin to shake and had to sit down."
His stamina improved within a month of beginning treatment. In three months, he could stand unassisted for longer periods, and do deep knee bends. In six months, he was much as he is now, his strength and energy about 75 percent of what it was before he fell ill.
With his rapid progress, he became Harvey's star patient.
"Nobody I know of has gotten that much better that fast," Martz said.
TREATING OTHERS
Martz retired when he became ill. In January 2005, feel-ing better and wanting to help others, Martz opened a new practice, Rocky Mountain Chronic Disease Specialists.
His stamina still isn't what it was, Dee Martz said, and she worries he could be endangering his health by continuing to push himself.
"But he feels so strongly that his gift of life is something he wants to pass on to others," she said.
Martz has seen about 350 patients in the first year: roughly 70 with neurological, ALSlike illnesses, the rest with problems such as fibromyalgia or chronic fatigue syndrome. And all are seeking answers.
"The average person has seen 24 previous doctors, and they've been told that they have maybe lupus, but it doesn't fit, maybe MS, but it doesn't fit, maybe psychiatric problems," he said.
About 80 percent test positive for the Lyme bacterium using IGeneX testing and are given the option of long-term antibiotic therapy, Martz said. Those who test negative but still fit "the classical clinical picture" also are offered the therapy, and many improve, Martz said.
"That just shows that the testing is not adequate yet."
The therapy is not a cureall, Martz stressed. And, at $2,000 to $3,000 a month, it isn't likely to be covered by insurance, because insurance companies don't commonly recognize chronic Lyme disease.
"You need to go into it understanding that it may not have any benefit at all," Martz said. "But if you wish to try it, we're willing to help you."
Don and Peggy Brown of Yuma, in northeastern Colorado, regard Martz as their daughter's saviour.
Sabrina Brown, 18, began having problems four years ago. It began with upper-back pain, but other symptoms began to pile on: acid reflux, blinding headaches, fatigue and cognitive problems, such as confusing colors.
Don Brown said they went to about 80 health care practitioners - doctors, chiropractors, acupuncturists, "you name it."
Ultimately, the answer they got was, "She's female, she's a teenager, her hormones were raging and she was crazy."
Peggy Brown, through Internet research, zeroed in on chronic Lyme disease as a possible explanation. Initial testing was negative. But it all fit, the Browns thought.
Then they found Martz.
"That's when the ball started rolling," Don Brown said. Blood samples sent to IGeneX tested positive for Lyme, a diagnosis Martz agreed with when reviewing Sabrina's long list of ailments. Last spring, he started her on intravenous antibiotics.
Today, with her treatment continuing, she is thinking more clearly and her pain is reduced.
"Just everything is better," she said.
DISPUTED DIAGNOSIS
The Browns are believers, but in medical circles, the debate rages on.
Those sticking to conventional wisdom acknowledge untreated Lyme disease can lead to a host of ailments, and a small percentage of patients with acute Lyme disease continue to have problems after standard antibiotic therapy.
There is some evidence those problems are not caused by a continuing infection, but by an autoimmune response, in which a person's immune system continues to respond even after the infection is gone.
There is no evidence, they say, that long-term antibiotic therapy helps.
"That idea, I believe, has been to a large extent discredited," said Dr. Justin Radolf, a professor of medicine at the University of Connecticut Health Center and an authority on the Lyme bacterium.
Some doctors treating chronic Lyme disease may be exploiting patients, Radolf said. Others may be swayed by patients who push for a diagnosis of Lyme over one involving no treatment and little hope.
"People grasp at straws," he said, "and Lyme disease is one they like."
That's not to say there are no cases of persistent Lyme infections. However, Radolf said, "We don't believe most people have it who are getting that diagnosis."
But Dr. Raphael Stricker, a San Francisco hematologist and a leading voice in the other camp, regards chronic Lyme disease as a growing public-health issue. Stricker is president of the International Lyme and Associated Diseases Society, which maintains Lyme disease is prevalent across the United States. Among his patients are best-selling author Amy Tan ("The Joy Luck Club"), who has written about her battle with chronic Lyme disease.
The Lyme debate is politically driven on the government's side, Stricker believes. Some people in the infectious-disease community, he said, maintain that acute Lyme disease is easily treatable and chronic Lyme is rare or nonexistent. "And they don't want to admit that they're wrong."
Despite the gulf separating the sides, Martz shies from calling it a controversy, preferring to say it's a complex issue awaiting answers.
"Unresolved is a very good word to describe this."
NUMBER OF CASES
21,273 cases of Lyme disease were reported by 44 states and the District of Columbia in 2003. States with the highest incidence of Lyme included Rhode Island, Pennsylvania, Connecticut and New Jersey. Colorado reported one case in 2002 and none in 2003.
TO LEARN MORE
- Rocky Mountain Chronic Disease Specialists, Dr. David Martz, 3010 N. Circle Drive, Suite 110. Phone: 264-1500.
posted
Are you there, Mike? I am getting worried that she is headed into a herxheimer reaction and no one will realize it.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thanks Lou for your responses. I don't think her breathing difficulties are a result of Herx. I am very familiar with J-Herx reactions, but I do think her daily fevers and her UTI are Herx reactions. She doesn't like being intubated, because she can't talk. We are having dificulty dealing with not communicating, but we are all learning. We hope the ventilator will be able to solve a little bit of those difficulties. The intubated-vent. is set a 8 breaths/minute, but she actually is initiating some of the breathing. She's also smiling a little bit this afternoon.
Occ. Therapy & PT came in and did see some good things...considering what they heard. She is handling the Rocephin well (she's been on it 19 days and Glutathione for 21 days).
I'd just like to find someone who had EMG/NCV tests that showed ALS, or motor neurone disease.
posted
Glad to hear from you and that you guys know how to recognize a herx. A lot of people don't. Did you read the story posted above on Dr. Martz? He had all the ALS testing done, told he had ALS, but got better on Lyme treatment. I know another man, same thing, diagnosed with ALS by Johns Hopkins, but they were wrong.
If you look at the hundreds of people now getting treated for lyme who were diagnosed previously with ALS, probably all or most of them had this EMG testing and were still misdiagnosed. I also read another internet forum, for people with ALS diagnosis and getting treated for lyme, because I have some motor neuron problems. One of the members is a doctor. He had the EMG testing, but is now responding to longerterm rocephin treatment. So, there are quite a few stories like this out there.
This is why I have declined to do the EMG and other nerve testing, because all these stories convinced me that they were not diagnostic.
I think you might be putting too much faith in testing.
And pasted below is an article showing motorneuron problems with lyme:
-----------------------------------------
Wien Med Wochenschr. 1995;145(7-8):186-8.
[ALS-like sequelae in chronic neuroborreliosis]
[Article in German]
Hansel Y, Ackerl M, Stanek G.
Neurologischen Abteilung des Kaiser-Franz-Josef-Spitals, Wien.
CSF investigation in a 61-year old female patient with clinical picture of motorneuron disease gave evidence for chronic infection with Borrelia burgdorferi. Improvement of clinical and CSF findings could be observed after antibiotic therapy. The diagnosis of amyotrophic lateral sclerosis which was initially suspected had to be revised and the disorder was interpreted as chronic neuroborreliosis.
Publication Types:
* Case Reports
PMID: 7610670 [PubMed - indexed for MEDLINE]
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
12 year old with ALS. No way. Stick with the LLMD and IV Rocephin.
REQUIREMENTS FOR THE DIAGNOSIS OF ALS The diagnosis of Amyotrophic Lateral Sclerosis [ALS] requires: A - the presence of: (A:1) evidence of lower motor neuron (LMN) degeneration by clinical, electrophysiological or neuropathologic examination,
(A:2) evidence of upper motor neuron (UMN) degeneration by clinical examination, and
(A:3) progressive spread of symptoms or signs within a region or to other regions, as determined by history or examination,
together with
B - the absence of: (B:1) electrophysiological and pathological evidence of other disease processes that might explain the signs of LMN and/or UMN degeneration, and
(B:2) neuroimaging evidence of other disease processes that might explain the observed clinical and electrophysiological signs.
CLINICAL STUDIES IN THE DIAGNOSIS OF ALS A careful history, physical and neurological examination must search for clinical evidence of UMN and LMN signs in four regions [brainstem, cervical, thoracic, or lumbosacral spinal cord] (see Table 1) of the central nervous system [CNS]. Ancillary tests should be reasonably applied, as clinically indicated, to exclude other disease processes. These should include electrodiagnostic, neurophysiological, neuroimaging and clinical laboratory studies.
Clinical evidence of LMN and UMN degeneration is required for the diagnosis of ALS.
The clinical diagnosis of ALS, without pathological confirmation, may be categorized into various levels of certainty by clinical assessment alone depending on the presence of UMN and LMN signs together in the same topographical anatomic region in either the brainstem [bulbar cranial motor neurons], cervical, thoracic, or lumbosacral spinal cord [anterior horn motor neurons]. The terms Clinical Definite ALS and Clinically Probable ALS are used to describe these categories of clinical diagnostic certainty on clinical criteria alone:
Clinically Definite ALS
is defined on clinical evidence alone by the presence of UMN, as well as LMN signs, in three regions.
Clinically Probable ALS
is defined on clinical evidence alone by UMN and LMN signs in at least two regions with some UMN signs necessarily rostral to (above) the LMN signs.
The terms Clinically Probable ALS - Laboratory-supported and Clinically Possible ALS are used to describe these categories of clinical certainty on clinical and criteria or only clinical criteria:
Clinically Probable - Laboratory-upported ALS
is defined when clinical signs of UMN and LMN dysfunction are in only one region, or when UMN signs alone are present in one region, and LMN signs defined by EMG criteria are present in at least two limbs, with proper application of neuroimaging and clinical laboratory protocols to exclude other causes.
Clinically Possible ALS
is defined when clinical signs of UMN and LMN dysfunction are found together in only one region or UMN signs are found alone in two or more regions; or LMN signs are found rostral to UMN signs and the diagnosis of Clinically Probable - Laboratory-supported ALS cannot be proven by evidence on clinical grounds in conjunction with electrodiagnostic, neurophysiologic, neuroimaging or clinical laboratory studies. Other diagnoses must have been excluded to accept a diagnosis of Clinically possible ALS.
Clinically Suspected ALS
it is a pure LMN syndrome, wherein the diagnosis of ALS could not be regarded as sufficiently certain to include the patient in a research study. Hence, this category is deleted from the revised El Escorial Criteria for the Diagnosis of ALS
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
Thank you all very much for your posts. Alex (Alexandria) has gotten bettter nutrition from where she was previously at. She has been a bit brighter the last two days. We have actually seen her smile quite a bit over those couple of days. Every day, she seems to get a low-grade fever (right around 100 or so). It's my belief that this is a Herx. Her movement does seem to be improving...slowly, though. Although we can't "confirm" it, we really feel this movement *is* new.
You all have been soooooo helpful with your posts and your prayers. We are aware of so many people praying for Alex. This website has been such a God-send to us. Bless you all!
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