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» LymeNet Flash » Questions and Discussion » Medical Questions » False positive for Lyme with an ALS diagnosis

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Author Topic: False positive for Lyme with an ALS diagnosis
Distraught Daughter
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My father spent many days at Mayo Clinic and through all his testing was informed that he had ALS. However, as we went over his blood test results it was revealed that he had tested positive for Lyme (but only on 1 of the 4 markers). Mayo passed his case to the Infectious Disease Center and was later notified that the result was a false positive. Is this common? What would cause a false positive? Should we send my dad down the path of further investigating Lyme and the false positive? My only concern is that I don't want to give my dad a sense of false hope (considering there is at least hope for some treatment w/ Lyme) if indeed he does have ALS. Is there anyone who has Lyme Disease, who first received a false positive? Any advise would be appreciated.
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JJGable
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Is your dad in Canada?

--------------------
JJG

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massman
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ALS is a stage of Lyme.

Lyme is found by a clinical diagnosis, not by testing the body.

In relation to lyme, Mayo docs are uneducated idiots. This part of their training comes from being clones. this is one doc, me (LLDC), CRITICIZING other docs.

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painted turtle
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Hi. Your father could very well have ALS but it seems that if it might be Lyme Disease that is contributing to it, what harm is there in treating the Lyme to see if the ALS is also alleviated?

I have heard this has happened before.

Although each case is different. Might take a cautious approach to it.

Even Lyme is not always, or in some kinds of cases, often cured with antibiotics. But the treatment does help.

If I were you I would at least pursue this avenue but keep the false hope at bay.

I don't see how addressing the Lyme would worsen the ALS (except for minocycline?)

You could do a follow up test with Igenex. They are a Lyme specialty lab. However I will warn you that many if not most mainstream doctors (probably at Mayo) do not put a lot of credence into this lab.

--------------------
www.lymefire.blogspot.com

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22dreams
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I'm sorry to hear about your dad's diagnosis.

THere is nothing wrong with getting a differential diagnosis from a lyme-literate doctor. and if warranted, treatment to see if your dad improves.

I don't know what sort of lyme testing you are referring to, but what did the ID doc suggest was creating the Positive to appear in lieu of lyme? anything?

Not wanting to give him False hope is understandable, but pursuing a differential diagnosis could very well slow down and/or reverse his symptoms if they are because of lyme.

Please note that the president of ILADS, who was on the brink of an ALS diagnosis himself before he began TBD treatment, feels that ALS presentation with a tick-borne etiology is
most-likely lyme + a co-infection (babesia).

"Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy" (about ALS)":

http://www.dreamdoctor.com/CLM/MartzPdf.pdf

Babesia is a malaria-like disease.

Here are video clips of This MD's personal story. Unedited so there are multiple "takes" within the footage.

He mentions how some cases of ALS are obviously "infection-triggered" and that it has also been seen in HIV patients.

I BELIEVE (don't quote me) that he stated that of the ALS patients he saw before closing his practice, 15% improved with treatment for tick-borne diseases.

http://vimeo.com/2074932
http://vimeo.com/2075385

http://www.lymedisease.org/news/touchedbylyme/372.html

"an idea serpentined around his mind and would not loosen its grip:

Despite the absolute diagnosis and the insistence of the doctors, including a world expert, that he was dying of ALS,

despite his own vow to face things head-on and reject the lure of denial,

Martz couldn't shake the notion that possibly, just maybe,

he actually had Lyme disease. (from "Cure Unknown: Inside the Lyme Epidemic," by Pamela Weintraub.)"

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Keebler
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-
I'm also very sorry to hear of your Dad's situation. And I just jump with lots of links that show MAYO MESSES UP all the time regarding lyme. The MAYO clinic simply does not believe in lyme. They are not even properly educated about it.

I see that you have posted in "Seeking a Doctor" for a LLMD in Illinois, where you father must live.

As to what to do while waiting, ask to be put on a list in case of cancellations. You might also ask the LLMD for a phone consult to cover interim suggestions.

For instance, might the LLMD suggest taking Olive Leaf Extract or Garlic capsules as nutritional support until your dad can get into the office.

Contact his area Support Groups for doctors who may be educated enough to help in the meantime or offer back-up support to the LLMD.

http://www.lymenet.org/SupportGroups/

Support Groups

===============

Here are some other things to consider:

First, it is vital to AVOID ASPARTAME and MSG (Google for all their names). Check labels on gums, mints, toothpastes and (gulp!) even liquid medicines, cough syrups and drops.

Aspartame and MSG are extremely neurotoxic and cause a terrible excitatory response in the nerve cells of the brain & entire body.

Also: AVOID STEROIDS as they can make lyme - other stealth infections much worse - more about this in the "white matter disease" link below.

======================

Please see the many relevant links and explanations at each of these current threads. There is a gold mine of information for you at each of these:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/93346

Topic: FALSE NEGATIVE results ? MAYO Clinic

- told the test was negative even in the face of a positive test.

======================

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/93433

Topic: white matter disease

========================

http://tinyurl.com/5crsjv

Book: CURE UNKNOWN: Inside the Lyme Epidemic (2008) - by Pamela Weintraub

This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.

http://www.cureunknown.com

==========================

The link to Martz' case, posted above by 22 dreams. That same doctor/patient in the article is one of many featured in this film:

http://www.underourskin.com

Lyme Documentary: UNDER OUR SKIN

You can purchase a DVD, here:

http://www.underourskin.com/store_home.html

==================

You might want to copy some of this to your computer file to start building a good set of reference links. Ultimately, we all hope your father can see a good ILADS-educated Lyme Literate MD (LLMD).

The very best of luck to him. He is lucky to have a caring daughter who is intelligent, and with a desire to learn more. Take care of yourself, too.
-

[ 04-16-2010, 03:35 PM: Message edited by: Keebler ]

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sutherngrl
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I actually think giving hope is important. What is the harm of a person having hope? With ALS its either hope of doom. I would choose hope!

I am also under the opinion that something causes ALS and lyme is a likely culprit. I don't think there are false positives with LD either.

I would go to "seeking a doctor" and find a "real" LLMD. Treat and see what happens. There is nothing to loose.

Also order the DVD documentary "Under Our Skin" mentioned above by Keebler. There is a doctor in the DVD that was diagnosed with ALS, given 2 years to live; and treated for LD and got well. Very inspiring.

Most ppl with LD are first misdiagnosed with illnesses like ALS, MS, Parkinsons, Fibromyalgia, Chronic Fatigue Syndrome and other illness of unknownn causes.

And forget Mayo! They suck when it comes to LD. Around here the saying goes......"Hold the Mayo"! They will never diagnose anyone with LD!!!

Seek a LLMD ASAP!

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Keebler
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-
I have the link somewhere in my computer but can't find it.

It was about 6-8 years ago, People Magazine, i think where a young man (maybe in his 30's) was diagnosed with ALS and told to get his affairs in order.

He found out it was really lyme and got much better - even back to fly fishing in Pennsylvania where he had a good LL DO who saved his life.

I'll see if I can find that. THAT is hope , just as is Dr. Martz' case detailed in both article and documentary. Hope is always good. We need to SEE it, not just be told about it.

Under Our Skin was very hopeful. Yes, it shows devastation but it also show that it is possible to conquer this.
-

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Keebler
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-
http://www.people.com/people/archive/article/0,,20140334,00.html

People Magazine - June 16, 2003 Vol. 59 No. 23

HIDDEN PLAGUE - By J.D. Heyman

Forget About SARS. Lyme Disease Is Spreading Steadily, and Some Experts Say It Can Elude the Standard Cure

For months no one knew what was happening to Tom Coffey. In the spring of 2001 the then 34-year-old radio dispatcher was struck by high blood pressure and double vision.


By summer's end he was suffering from facial palsy, crushing fatigue and joint pain so intense he walked with an old man's shuffle. Medical visits turned up nothing. By October his weight had plummeted 105 lbs., to 202. "My doctor was at the end of his rope," says Coffey. "He kept referring me to different people."

When he awoke unable to swallow his saliva, Coffey rushed to a hospital near his Frederick, Md., home and was given blood tests and brain scans.

Doctors returned with a terrifying diagnosis: ALS, or Lou Gehrig's disease, a degenerative illness likely to kill him within six months. "Tom's dad said, 'I always thought he'd be burying me. Now I'll be burying him,'" says Coffey's wife . . . .

. . . Hooked to a feeding tube, Coffey waited to die. But a relative who thought his symptoms might have another cause suggested a trip [to . . . ] a suburban Philadelphia Lyme disease specialist.

The doctor found something everyone else had missed--a "bulls-eye" rash beneath his patient's hair. Coffey was suffering not from ALS but from a severe case of Lyme, which is spread to humans by tick bites. . . .

. . . Left undiagnosed, however, it can invade the nervous system. "I always thought Lyme was no big deal," says Coffey, who rebounded after taking medication. "But it damn near killed me.". . .

. . . Coffey, now 37, is taking no chances: He has remained on antibiotics for 14 months to be sure that his Lyme is really gone. Still, he's grateful to have escaped his death sentence. "I'm starting over again," he says. "From here on out, the rest is gravy."

- Full article at link above.
-

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MariaA
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I think I have read here that SOME of the Lyme/ALS patients do decline rapidly on Lyme treatment. I think it's more complicated than treating other forms of neurological Lyme. However, there are doctors who do it. the links above are really good.

Anyone know if CaliforniaLyme, the former patient who is a member here, is reachable? She knew a LOT about this issue back when people were first trying to treat ALS/Lyme.

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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Keebler
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-
Addresses both ALS that was really lyme and also Mayo missing lyme in another patient:

http://www.mercurynews.com/search/ci_14241649?IADID=Search-www.mercurynews.com-www.mercurynews.com#article_comments

San Jose Mercury News

Learning about Lyme disease the hard way - By Patty Fisher

Updated: 01/22/2010

A month ago, Bart Fenolio was told he had Lou Gehrig's disease and had two months to live. Doctors advised his wife, Heidi, to take him home and call a hospice.

But Fenolio is proving the doctors wrong. Instead of getting worse, he's growing stronger each day, thanks to antibiotics. That's because he doesn't have Lou Gehrig's disease, which isn't curable. He has Lyme disease, which is.

[His LLMD said] "I saw a new patient the other day who had weird symptoms and had gone to the Mayo Clinic for a complete work-up," Stricker told me. "All they could come up with was fibromyalgia," a syndrome characterized by chronic pain, fatigue and depression. Stricker learned that the woman had grown up on Cape Cod, where Lyme-carrying ticks are common.

"How could you miss that little tidbit of her history?" he wondered.

. . . [read how the state authorities and his Kaiser doctor discount lyme and treatment: saying it's still not really a big deal in California . . . we "follow the IDSA"] . . .

Fenolio's family is convinced that the antibiotics are helping. Today he is in a San Jose nursing home, improving each day. He knows there will be setbacks, but his wife hopes he'll be strong enough to go home in a couple of months.

"I just wouldn't want anyone else to go through this nightmare," she said. "If I had one of those diseases and was told there was no cure, I would definitely want to be tested for Lyme."
---
Full article at link above. [email protected]
-

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sixgoofykids
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Ditto what MariaA said. Your dad needs a real Lyme expert to treat him. I believe ALS patients who have Lyme induced ALS need IV meds at the beginning.

--------------------
sixgoofykids.blogspot.com

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IckyTicky
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I agree. I don't believe in false positives for Lyme.
While I wasn't diagnosed with ALS... I was diagnosed with MS and then later developed "ALS like symptoms" and I was terrified. I had muscle weakness and body wide muscle twitching.

Found out not too long after that I have late stage Lyme disease. After two years of antibiotic treatment my muscle twitching is minimal and muscle weakness is pretty much gone.

I don't think I'd worry about giving false hope. Everyone needs hope. I'm so glad he is seeking an LLMD.

--------------------
IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND
IGG: 31+, 39IND, 41+
Also positive for Mycoplasma Pneumoniae and RMSF.
Whole family of 5 dx with Lyme.

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Lymetoo
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FALSE POSITIVES ARE EXTREMELY RARE.

Ignorant doctors at Mayo are NOT!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Ian
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Am I the only one that is wondering how anyone could ever conclude that a test is a false positive? How could someone ever know for certain that a test was a false positive? I can understand how a false negative would be concretely demonstrated, say a negative Western Blot and positive PCR. It seems utterly impossible to prove that a test is a false positive though.

Your dad has a positive test for Lyme and the symptoms of Lyme. That is more than enough to get him a diagnosis from a LLMD, along with better Lyme tests and tests for co-infections. The antibiotic treatment will also help you with the diagnosis. If the antibiotics cause a herx reaction and/or he starts to feel better then you know that Lyme is the issue.

By the way, mainstream doctors will say that Igenex is not a reputable lab. That is complete BS. The government does reviews of Igenex extremely often, probably because so many in the medical community think something weird is going on over there. Igenex consistently scores in the 90's, far better than Quest Diagnostics and LabCorp.

Some doctors will also refer to people in the Lyme community as nutcases. According to them when we receive a positive it must be a false positive because "Lyme just doesn't happen that often". When we herx on abx "it's psychosomatic". When we are cured by abx, well, they don't have a very good explanation for that one. It doesn't matter, the docs at Mayo will discourage you away from Lyme because they have blinders on and their defense mechanisms prevent them from admitting that they are ignorant about something. The ability to admit that you were wrong is not common in doctors.

--------------------
Bart and Babesia seropositive
Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset

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2young2dieMom
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quote:
Originally posted by massman:
ALS is a stage of Lyme.

Lyme is found by a clinical diagnosis, not by testing the body.

In relation to lyme, Mayo docs are uneducated idiots. This part of their training comes from being clones. this is one doc, me (LLDC), CRITICIZING other docs.

Add Yale neurology to the list of idiot doctors. I was just diagnosed with ALS and also have many classic Lyme symptoms but they never bothered to investigate that before handing me a death sentence. I'm starting a Ceftriaxone IV on Monday, no thanks to them!

--------------------
Dxd ALS 3/2010
Dxd cllinical Lyme 4/2010
Positive for Protomyxzoa but absolutely nothing else in Igenex

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Ian
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I'm not surprised at all by Yale neurology. Penn Medicine is the exact same way. Their director of clinical services for infectious diseases told me that chronic Lyme doesn't exist and that LLMD's are charlatans. This coming from a very well-respected doctor that works extensively with the NIH and the CDC.

The vast majority of universities, especially private universities, know nothing about Lyme. They focus almost entirely on research, and they decide their research based entirely on mainstream medicine. Since nothing is taught about Lyme in medical schools the only doctors that know about it are ones that have first-hand experience with it, not doctors at Ivory-tower, research-oriented, universities.

--------------------
Bart and Babesia seropositive
Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset

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SpottedRocky
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I was seeing a nuerologist that specializes in multiple sclerosis at cleveland clinic. My last apointment with her she started out being real nice until i told her i finally found out what

was causeing my MS like symptons. i showed her my postive test results for my rocky mountain spotted fever and told her i thought i also had lyme disease. Immediadely she got ignorant and

rude with me and what was supposed to be a 45 min appointment turned into a five minute appointment. she told me not to make any more appointments with her and she was not nice about

it. Its was like she was angry with me because i believed the RMSF or lyme was what causing my symptons.

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Ian
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Your presence and the positive tests were a counterexample to everything she has learned and been told by her colleagues. The medical profession just doesn't believe that Lyme is a common problem, and for mainstream doctors to admit it now, after years of denial, would be a major blow. When people's beliefs are challenged they generally become defensive. Doctors are expected to know everything so multiply that defense mechanism by about ten. When an ignorant (I mean this factually, not to denigrate) doctor tells you that your problems are "psychological" feel free to say the same thing right back. The doc would be wrong, and you would be right.

--------------------
Bart and Babesia seropositive
Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset

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Pinelady
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I talked with a local MD this week about Lyme and he thinks for Ehrlichiosis and Lyme you are good to

go in 21 days treatment. It is a global thing not just Mayo. I told him I would not want anything

less than 3 mths. treatment for any tick borne illness and he looked so puzzled.

--------------------
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

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Pinelady
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Look at this article for instance. http://www.jrheum.org/content/early/2010/03/28/jrheum.090711

If no follow up data was available-most likely cos' they went somewhere else-how can they say there was no refractory illness?

quote: " Of patients with antibiotic refractory arthritis,
none in whom followup data were available developed chronic arthritis,
joint
deformities, or recurrence of infection,
supporting current treatment guidelines."

I have a few choice words for those choosing to side with the guidelines.

--------------------
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

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Pinelady
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http://www.lymedisease.org/news/touchedbylyme/372.html
This Dr. cured himself of his ALS diagnosis, he treated the Lyme and now works to help others.

Martz devoted the next two and a half years to a project that gave extended antibiotics to about 90 ALS patients, and demonstrated objective

improvements in 15% of them. He has also treated more than 800 chronic Lyme patients, with good

response and minimal side effects. That work is currently being written up for publication.

Many Lyme docs say they have yet to see a false positive for Lyme. But many false neg. due to the

lack of bands, the lack of a antibiotic challenge, as well as other causes.

--------------------
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

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2young2dieMom
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I need some encouragment. Does anyone have stories of early ALS patients surviving by taking antibiotics? I am a mother with a 14 year old son and a devoted husband of 27 years. I have just been diagnosed with clinical ALS. I have also started seeing Dr. C in MT Kisco NY and hoping I have late stage Lyme that can be helped with Ceftriaxone. I'm so terrified I have to take tranquilzers to sleep at night. I'm not ready to leave my family!

--------------------
Dxd ALS 3/2010
Dxd cllinical Lyme 4/2010
Positive for Protomyxzoa but absolutely nothing else in Igenex

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Pinelady
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Yes the doctor featured in the film Under Our Skin is the same above.

He treated his ALS/Lyme and now working to save others.

As well as this family.

http://www.mercurynews.com/ci_14241649?nclick_check=1The

I hope you can make contacts.

--------------------
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

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jblral
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I attended the LDA/ILADS conferences in Washington DC last fall. While there, I met a mom from Massachusetts, whose daughter in her 20s was diagnosed with ALS and told there was nothing that could help her. The mom (who knew nothing about Lyme at the time) took her to another neurologist (or whatever the specialty is) for a second opinion. That doctor thought to give her a western blot, and the young woman tested CDC positive for Lyme. But that doc wouldn't give more than 30 days of antibiotics (per IDSA). The girl showed improvement under treatment, but then backslid when they stopped it after 30 days. Eventually, they got to a different doctor, who treated her with IVIG, and the mom said her daughter got her life back. Very moving story.

Dorothy

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Distraught Daughter
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Wow! When I posted on this forum I had not idea I would get such a great response. Thank you so much for the encouragement and support. It really means a lot to my father and I. After reading so many promising stories it seems quite obvious that we should pursue the path of Lyme Disease.
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lou
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Treating lyme_caused ALS can be tricky. There is a subset of these patients who get worse with full dose antibiotics. Not sure how common this is, and no one knows what to do about it except go with lower doses. But other cases make significant progress on the typical doses prescribed by most lyme doctors. There is no way to discover which group a person is in, in advance. This can be trial and error treatment.

But anyone who has an ALS diagnosis from a non-lyme literate doctor has everything to gain by looking further. If lyme is not the cause, the outcome will still be bad. But if it is the cause, then maybe treatment will help. Why not try?

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GiGi
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http://74.125.155.132/search?q=cache:fJevkPuxawUJ:www.lymediseaseresource.com/wordpress/important-new-insights-from-dr-klinghardt/+alpha+lipoic+acid+klinghardt+reason+for+taking&cd =7&hl=en&ct=clnk&gl=us&ie=UTF-8

ALS, Parkinsons, MS often are tied to dental toxins (very important factor in these) and environmental toxins (pesticides, insecticides, etc.) which automatically infers Microbial infections such as Lyme. The majority also suffer from KPU. http://lymeinducedautism.com/images/1_KlinghardtKPU_09_PX.pdf

My husband has a mix of ALS, MS and Parkinsonism symptoms. Always multiple causes as above, never only Lyme.

You will find lots of info as linked.

Take care and hope.

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joshzz
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FALSE POSITIVE. They're always ready to give you a false positive diagnosis, but these same medical groups absolutely never say it's a false negative.

Get to a doctor that is competent in diagnosing and treating Lyme disease rather than going to doctors that have unholy relationships with the insurance companies.

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Distraught Daughter
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2young2die - I am so sorry for what you are going through...we can definitely relate. I am curious, did you test postive for Lyme? Have you started the Ceftriaxone and was it prescribed by an LLMD? Some comforting words that were told to my Dad by his Internal Med Dr. were "The best form of medicine does not come in pill form. It is Positive Attitude, Love and Prayer."
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elizzza811
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Are you sure his ALS isn't related to...?...

http://www.powerwatch.org.uk/news/20050722_bamberg.asp

http://www.ei-resource.org/illness-information/related-conditions/electrical-sensitivity-&-hypersensitivity/

http://weepinitiative.org/talkingtoyourdoctor.pdf

http://www.stichtingehs.nl/images/stories/EHS/ehs_in_the_netherlands_2008.pdf

http://www.savespiritbear.org/MedicalPractitionersSynopses.html

http://www.avaate.org/article.php3?id_article=1216

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massman
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When did frequencies go rampant ?

History of ALS
1850 - English scientist Augustus Waller describes the appearance of shriveled nerve fibers

1869 - French doctor Jean-Marie Charcot first describes ALS in scientific literature

1881 - "On Amyotrophic Lateral Sclerosis" gets translated into English and published in a three-volume edition of Lectures on the Diseases of the Nervous System

1939 - Lou Gehrig is diagnosed with ALS

1941 - Lou Gehrig dies at age 38

1950s - ALS epidemic occurs among the Chamorro people on Guam

1991 - Researchers link chromosome 21 to FALS

1993 - SOD1 gene on chromosome 21 found to play a role in some cases of FALS

1996 - Rilutek becomes the first FDA-approved drug for ALS

1998 - El Escorial is developed as the standard for confirming ALS

2001 - Alsin gene on chromosome 2 found to cause ALS2

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METALLlC BLUE
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quote:
Originally posted by Distraught Daughter:
My father spent many days at Mayo Clinic and through all his testing was informed that he had ALS. However, as we went over his blood test results it was revealed that he had tested positive for Lyme (but only on 1 of the 4 markers). Mayo passed his case to the Infectious Disease Center and was later notified that the result was a false positive. Is this common?

It is very common for Lyme Disease patients to receive a "false" positive test from the Mayo Clinic and to be told they don't have Lyme Disease, when in-fact it is later confirmed that they do. False positives are exceptionally rare in and of themselves, meaning -- if he tested positive he "very very very" likely has Lyme Disease.

quote:
What would cause a false positive?

A stupid doctor who doesn't believe in Chronic Lyme Disease.

quote:
Should we send my dad down the path of further investigating Lyme and the false positive?

Absolutely. Yes.

quote:
My only concern is that I don't want to give my dad a sense of false hope (considering there is at least hope for some treatment w/ Lyme) if indeed he does have ALS. Is there anyone who has Lyme Disease, who first received a false positive? Any advise would be appreciated. [/qb]
Many patients test false negative. Meaning, the test is negative but they actually are infected. Then you have other patients like your father who test positive (and really are infected) but who are told by the doctors that the test is wrong.

To prove the test is wrong, get tested through Igenex using the Western Blot. The test number is 188 and 189. If that comes out positive, you'll know for sure. It will erase any doubt and you can start the right course of treatment.

Wishing you the best. Sorry you've both been dealing with this drama.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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Keebler
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-
Distraught Daughter,

Actually, I am furious that your doctor put all your father's hopes on

" . . . The best form of medicine does not come in pill form. It is Positive Attitude, Love and Prayer." (end quote)

That releases doctors of their responsibilities. Of course, a positive attitude helps but lyme is one of the most toxic infections known to man.

As GiGi says, there are also issues with heavy metals. Just as there are other coinfections to consider, there are also many other cofactors that the doctors are ignoring - either in their sheer ignorance/laziness or for some other perverse reason. They are literally perverting the course of justice. Your father has a right to a better doctor.

Had your father just been bitten by the most venomous snake in the world, would his doctor have withheld medicine and told him that a positive attitude would be his best medicine?

Had he contracted malaria, would the doctor have withheld medicine and told him that his thought process and happy emotions should heal him?

If his mercury level was high, would they tell him to go have a good laugh?

That's just a coward doctor's way to get rid of a patient with something that they just don't want to treat - or bother to learn more about. It's malpractice and a terrible weight to tell the patient their thought process (alone) should be getting them all better. It tells the patient the doctor is giving up, closing his eyes and his brain and placing the onus entirely on the patient.

May your prayers, and his, (and ours) help him find a good medical care. But it's the kind of thing where one can pray but they'd darn well better also row to shore.
-

[ 04-18-2010, 02:49 PM: Message edited by: Keebler ]

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maps
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I don't have a great deal to add to all this wonderful information but I thought I would let you know I am also in Toronto. Living in Toronto I was totally stunned that I tested positive for lyme.

I am sorry to hear about your dad but after 13 years of chronic fatigue syndrome diagnosis and 13 years of going steadily down hill with no hope of recovery even a glimmer of hope is really, really nice. I am not sure anyone can say 100% that a person does not have lyme

I have had extreme neuro involvement losing sensations, ability to walk straight etc.

I am seeing a doctor in Toronto who ran a battery of tests only to find out that I have 3 major brain lesions and about twenty small ones.

I was on and off oral antibiotics since September and went to IV March 9th. The improvement is huge, although nerves coming back to life can be quite painful and life right now is like a roller coaster but the progress is great.

Also wanted to let you know if you can find treatment in Canada everything is covered by OHIP including the antibiotics and the nurse that comes everyday.

If you would like more info send me a private e-mail.

Wishing you well.

maps

--------------------
1999 CFS, 2002 CMV Myco pneumonia
1 year antibiotics on and off
2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease
Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics

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2young2dieMom
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Distraut Daughter - Give your Dad hope. I haven't tested positive for Lyme but it is my only hope in the face of ALS. I couldn't go on without it. I will be starting the Ceftriaxone this week, I know it will be difficult because I have to drive to the doctor's office 3 hours every day so my insurance will pay for it. It is a small price for the chance to live.

From what I've read, ALS is an autoimmune responce to advanced neurological Lyme disease. I started losing strength in my left arm 2 years ago. I went to a Yale neurologist who did all the usual tests and told me I was fine. I tested negative for Lyme. 2 years later my right arm had become weak, I had little energy, constant facial flushing, unexplained high fevers, mysterious crawling sensations on my nose, lips and eyes, and periferal numbness in my whole body. I went back to the same neurologist who repeated all the tests and after the EMG he announced that I had clinical ALS.

After panicked searches on the internet, I thought maybe I might have Lyme and am starting treatment with a LLMD this week. I still have not tested positive but have had Bell's Palsy 5 years ago and was treated with steroids at the time (which I've heard was really bad). After suffering with severe joint pain and headaches, I was treated by other doctors with synthroid and depression. Nothing helped.

I guess when Lyme reaches this stage to be classified as ALS its rare to survive. We all need hope. Does anyone have any more survival stories to tell?

--------------------
Dxd ALS 3/2010
Dxd cllinical Lyme 4/2010
Positive for Protomyxzoa but absolutely nothing else in Igenex

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karenl
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Distraught Daughter,
I did not read all the posts. You can pm me if you have questions.
With only one band and ALS, probably it is 41, you have to do the following:
Frylabs.com
order the biofilm test and let them know the ALS,
you then get the treatment options. In the meantime I personally would take minocyclin 100 a day, start slowly. Then a lot later add plaquenil.
I have enough reason to believe ALS is an infection.You need to take action soon, he can get a lot worse,but you need to call the lab asap.
He should be doing a lot better after only weeks.
This is only my private opinion and experience, have no medical education.

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WildCondor
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The Mayo clinic is total garbage for anything Lyme related. Wasting your time. ALS is commonly diagnosed, when it is usually Lyme disease at the root. Lyme is a clinical diagnosis.

Watch Under the Eightball, a movie about a woman who was diagnosed with ALS, and died from it, when it was Lyme disease the entire time.

www.undertheeightball.com

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seibertneurolyme
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There are several health books suggesting brain supplements for different neuro diseases. I have read most of them as hubby's most persistent symptoms have been Parkinsonian tremors. Probably one of the best books is "Brain Recovery.com" -- have not read "The Better Brain Book" by the same author. By reading these books it becomes pretty obvious that ALS, MS, Parkinsons's etc have much in common.

Nutritional supplementation while expensive can improve brain health and actually may help with detox and make the antibiotics more effective.

I would suggest some additional tests as well -- a brain SPECT scan, the CD 57, and C4a are all indirect tests for lyme and tickborne infections.

As for coinfections -- I would probably suggest getting tested for bartonella at the new Galaxy Lab and also doing a bloodslide at Clongen (much cheaper than Fry Lab at only $100) to look for bartonella or babesia.

http://www.galaxydx.com

http://www.clongen.com

Bea Seibert

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seibertneurolyme
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2young2die,

Several more patient stories at the website below. Click on Articles & Testimonials. The Cardiac case says the patient had been diagnosed with ALS for over 7 years.

http://www.drgregorybach.com

Bea Seibert

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LSG Scott
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you must watch this you tube vid

were talking about life and Death, i know i lost my Mom to what they thought was ALS but it wasn't it was lyme

http://www.youtube.com/watch?v=3nIuIF6q8FA

--------------------
LSG Scott

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Keebler
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Bea,

That website is the same as for the doctor in this article (posted above, but here again to be close to your link ( http://www.drgregorybach.com ):

http://www.people.com/people/archive/article/0,,20140334,00.html

People Magazine - June 16, 2003 Vol. 59 No. 23

HIDDEN PLAGUE - By J.D. Heyman

". . . Coffey was suffering not from ALS but from a severe case of Lyme . . . ."
-

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Pinelady
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Massman how do they know the gene/chromosome markers are not a direct result of the borrelia and other TB Infections and associated entities?

Is it possible the damage/altered genes are found in sick people for a reason.

To say one has XMRV or SV40 and markers for Men for instance does not indicate that person will for sure get prostrate cancer. Just thinking out loud.

--------------------
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

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Keebler
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-
Pinelady, good point. I know that borrelia does get into DNA and changes it. I've read that in several research articles.

And a lightbulb just went off. On a much simpler level with a condition that can be controlled, my thoughts go to celiac and the way my body can't handle gluten (as is frequent with lyme patients).

The genetic abnormalities I have in regard to celiac might be damage from infection, not necessarily heredity. I know that infection can cause celiac but I've not considered that it, too, may change genetic markers.

So much to learn. Genetic markers or not, I would never ever want to think a tests saying this gene or that gene meant a specific destiny. So very many pieces to our puzzle. DNA changes. We can also shift the environment to influence the outcome.

Distraught Daughter - just remember that there is always hope. There are many things that can be done to help your father. I'd love to hear back that you and he have found some very wise LLMD to turn on a few light bulbs.

In the meantime, a gluten-free diet could be somewhat helpful. Many LLMDs suggest their patients avoid gluten as it helps so much.

Good luck.
-

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