410 – Lyme & ALS
Severe cases of Lyme disease can be misdiagnosed as ALS, Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease.
Excerpted from lymenet.DE: http://www.lymenet.de/indexordner/ials.htm
When I published my work on metronidazole in Lyme around 20 patients contacted me and said they had Lyme AND ALS.
Once I had decided there may be a connection between the diseases I encouraged every ALS patient I came across, and a few physicians to test for Lyme. All told that is about 30. This is the most important group for they were unselected. There were NO negatives in this group and for the most part they were either IgG or IgM Western Blot positive, mostly to CDC criteria (which is over strict and ignores the 39kDa line)
If we were to take 150 Lyme patients we would be VERY surprised to have 150 positives, more like 100. However many of the above were pre-selected (why would you contact me if you were diagnosed ALS but Lyme negative, I would be snake oil.).
BUT, if the diseases were independent, we would expect a MAXIMUM of 100 cases in the whole of the US, so 150 becomes a significant number.
Now, those patients who were diagnosed ALS and tested Lyme positive carried on to develop the sequelae of ALS. Last Thursday we lost Dean Chioles who has a web page at http://www.shoptown.com/dean/ . Note that he was diagnosed with Lyme in 1998, before I published anything on Lyme.
We should also remember: Brian Pierson and Katherine Crowe who we also lost, both Lyme positive. Brian was 43 years old or so.
Now there have been 5 papers that describe clinically diagnosed ALS patients with Lyme reactive serologies (including the Halperin paper which finds a statistically significant number of Bb positive patients with ALS) and one letter by Mandell, Steere et. al. NEJM 1989;320:255-6 which found NO Bb antibodies in any ALS patients.
The responsibility is now with Mandell, Steere et. al. to come forward and explain how they can find NO Lyme positive ALS patients when I can find them so easily and even ALS patients themselves can see the connection.
How about it Dr Steere, this is an open venue? Perhaps one of the Yale workers will read this and we can enter into a debate that will explain why this connection has been stalled for 12 years.
With best regards to all.
Dr Martin Atkinson-Barr
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Excerpted from MERCURYNEWS.COM ( Posted: 1/22/2010 )
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.
Lyme disease, a bacterial illness spread by ticks, is a poorly understood and strangely controversial illness that has been sweeping the country since it was discovered in Connecticut in the 1970s. While still rare in California, there were 28,921 confirmed cases and 6,277 probable cases in the United States in 2008, nearly twice as many as in 1994.
But Lyme experts suspect there could be 10 times that many. That’s because when not treated immediately, Lyme can hide in the body for years and then attack, masquerading as anything from heart disease to arthritis to lupus. Folks might not even know they’d been bitten. And the tests for Lyme disease are notoriously unreliable.
Dr. Raphael Stricker, a Lyme disease expert in San Francisco, regularly sees patients who have been misdiagnosed with chronic fatigue syndrome or Parkinson’s disease.
“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
”How could you miss that little tidbit of her history?” he wondered.
The original article is no longer available. You can learn more about Bart Fenolio at: http://www.caringbridge.org/visit/bartfenolio/mystory
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Take the case of a Colorado doctor named David Martz. He was diagnosed with ALS, or Lou Gehrig’s disease, in 2003 and given two years to live. Although he had initially tested negative for Lyme, he pursued treatment by a Lyme-literate doctor — and the treatment reversed his symptoms and saved his life.
http://www.post-trib.com/lifestyles/2229228,lyme0505.article
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From LymeBlog.COM ( Posted: 4/22/2006 )
Obituaries: Emmy-winner Scott Brazil dies of ALS and Lyme disease at 50
More at: http://lymeblog.com/modules.php?name=News&file=article&sid=479
Lyme/ALS success story: Bart Fenolio
Only through the persistence of Heidi, his wife of 46 years, and their scientist son and social-worker daughter was Bart given a series of Lyme tests that came back positive. He says his doctors at Kaiser Permanente insisted he had ALS even though he began to improve with antibiotics, and he left Kaiser to get the treatment he needed.
http://www.mercurynews.com/ci_15633546?source=rss
Toofan,
Thank you, but, I try to make it clear when I am opining to prefix my op-ed posts with “COMMENTARY”. I am schooled in the MATHS, not the SCIENCES, so I think it is important that readers differentiate between my views and those of Physicians and Scientists.
I am also cognizant that many of the site’s readers have “Lyme Fog” so I try to make it clear and concise, and above all else, easy to use. Any comments for improvement are greatly appreciated.
I have gathered Lyme information from scores of chronically sick Lyme patients over the past decade so I have a pulse on our collective feelings, anger, and ills, as well as the horror stories we all experienced with Doctors; hospitals and insurance companies.
As such, our stories and emotions about this disease can get extreme. But the most important thing is to make sure others are properly educated so they might avoid the devastation we had/are going through.
I lost two family members to this disease. Even though they both tested positive for Lyme, neither believed they had it, and neither did their doctors. But, that’s just blood under the bridge.
Regards,
Rob
What antibiotic works for lyme? My brother -in-law is lyme positive, but is diagnosed with ALS. I was thinking that there would be no harm in trying the antibiotic. If it doesn’t work then the diagnosis is propbably ALS.
Helen,
I am not a physician but I have spoken to a number of people that have used antibiotics as a prophylactic with success. They had gotten early Lyme symptoms like flu; aches; severe fatigue and it cleared up so they concluded it was Lyme they had.
IMHO, to really know if you have LD instead of ALS, you need an expert LLD. They would be able to test you properly for Lyme and other co infections. If necessary they could put you on a IV antibiotic regimen (e.g., Rocephin; Zithromax).
Just taking the standard 21 days of Doxycycline might give you some positive results but, most likely won’t be conclusive.
Keep in mind, that not properly taking antibiotics as prescribed enables the bacteria to mutate. Pathogens that survive a course of antibiotics generally become resistant to the antibiotic which can be more detrimental down the road.
All antibiotics weaken your immune system.
Best of luck,
Rob
I think ALS is a severe form of neuroborreliosis. The problem with treatment is that the rate of killing bacteria has to equal efficency of removing neurotoxins and repairing your membranes- phospholipids etc. This is complex so the regular Drs shy away from treating ALS patients. The antibiotics give rise to die off reaction so symptoms worsen. The co-infections are vital in the recovery process. The co-infections also reflec how immunosuppressed you are. I wish neurologists would study microbiology or work closely with microbiologists in treating chronic infections. As one famous scientist said chronic disease= chronic infections
After a relative has been under Dr. Jemsek’s care for over a year now, he is now in his final stages of ALS, not Lyme, as Jemsek so enthusiastically convinced him he had. “It is absolutely NOT ALS, it’s definitely Lyme”, Jemsek said. (I should probably mention he had been diagnosed with ALS by Mayo and the ALS center in Miami prior to seeing Jemsek). He had also been treated by another ‘lyme-literate’ doctor for 6+ months prior, with no improvement. Jemsek’s false assurances made my relatives last year even worse, driving 17 hours to DC at least every 5-6 weeks, buying Jemsek’s magical potion of “HOPE”. “Remarkable improvement” he would write in his report as each month as he was getting worse and worse. “One more round of antibiotics” he would say. Yes, I believe there is corruption with in the CDC, but I also believe there is corruption among ‘lyme-literate’ doctors as well. For those of you that believe you have lyme… get every test available and understand them, do your research, step back and look at everything objectively. If the LL Dr hasn’t improved your symptoms within a few months, go to a real Dr, don’t let them take what’s left of your life away.
Jennifer,
I am sorry to hear of your relative’s debilitating condition and fully understand your frustration with the lack of success with his Lyme treatment. But, since studies have shown that 40% of Northeasterners have been exposed to the Lyme bacteria in some fashion, it is no wonder that Dr Jemsek believes it may have some influence on his condition.
Since ALS has no explanation as to what causes it, or cure, pursuing the Lyme treatment SEEMS like the correct course of action. Unless of course it is not economically feasible.
Keep in mind, curing Lyme disease is a long and arduous task with no guarantee of success.
I wish you all the very best,
Rob
My Mother was diagnosed with ALS a little over 1 1/2 ago, and we had completly accepted this diagnosis until last Wed when for the first time since her diagnosis I came accross Lyme information. We went and seen he PCP Wed 12/21/11 and I presented her with all the research that I had found and she will begin testing my Mother for Lyme disease on January 19, 2012 due to her just having a steriod shot we are waiting 6 weeks to make sure we get accurate results. I would appreciat any and all advise that anyone has to offer as far as what the next step should be if in fact she does test positive. Thank you all and have a very Merry Christmas!!
I understand it is very difficult to succumb to a terminal illness, I am so sorry for you and your family. What I have learned in the past two years through my brother in laws experience, first and foremost, if the Doctor is listed on the quack list, they are there for a reason, avoid them! Unfortunately my in laws fell into the trap. There is a Dr in CO that recognizes Lyme & ALS you may want to consider. Having the blot test alone won’t matter, the results are so inaccurate and depending on the Dr you are seeing will depend on the course of action. By no means are these tests conclusive but have found that lyme patients have certain things in common through these tests: CD57, PCR Test, Spinal fluid, MRI. My brother in law was convinced by the ‘best in the country’ he had lyme, NOT ALS. My in laws have footed the bill as they have the means to do so. He has done just about every controversial method and treatment along with over 18 months of antibiotics being pumped through a port. What was clear is his mind was never cloudy (as they say lyme patients have), his muscles had atrophy and the above tests all came back normal (relevant to lyme) and yet ‘the best’ still insisted it was lyme and he could ‘cure’ him. Each month he declined further and further. Understand these tests, question these tests and don’t just listen to what the LLMD’s have to say. If you are unable to look at things objectively, find someone close that you respect that can help you do that. I have recently read a quote… “Acceptance does not mean defeat. Hope is an integral part of living and should go hand in hand with acceptance.” Wishing you the best through the journey ahead of you. Merry Christmas!
Jennifer,
It is an intense debate as to whether desperate patients want to believe they have LD, or that non Lyme Literate doctors have all the answers and a better treatment. After all, what causes ALS? Auto-immune problems? Heredity? That is a cop out.
My genius neurologist insisted that I had MS. A disease that I was told afflicts 2 in a million people. Lyme on the other hand has been detected in 40% of the population. Though, the majority of these people are stage-1 and have no symptoms.
My neurologist treated me with antifuerons, and during this treatment the Lyme spirochetes overcame my spinal chord and brain causing irreparable nerve damage.
I then gave up on this neurologist and spent the next 9 years on and off daily IV antibiotics. All my Lyme symptoms cleared up, but not the nerve damage.
The genius is now head of neurology at his medical center. The medical center has a few new buildings, and he lives in a wealthy community. My Lyme doctor lives a modest, highly stressed life, with hundreds of patients that other doctors won’t touch, and constantly worries that she’ll lose her medical license because she treats so many Lyme patients.
I know several chronic Lyme patients with very similar stories.
As much as scientists, doctors, the CDC, et al want all Lyme patients to have definitive symptoms and treatment, our physiology is complex and the bacterium is random and indiscriminate. The healing process is different for everyone.
Logically, the odds are much greater that an individual has contracted LD rather than MS or ALS.
Have a good holiday,
Rob
Thank you for your response to my post. We spent about 5 days in the hospital over Christmas break. My Mom went in with pneumonia on 12/25/11 and was discharged on 12/30/2011 during that time she recieved rocephin, azithromyicin, and vancomyicin. on or about the 3rd day we started to notice some very obivious changes! She was eating without choking, and she was also able to move both of her legs with out assistance!! We are home now and have gone without the anibiotics for 8 days and things have gone back to the way they were which is very dissapointing!! We are still looking into this further and I will keep you updated!! Thanks for the kind words!!
We were building our “Retirement House” in Thousand Oaks, California and about 3 (Could be 4) years ago my husband found a tick burrowing into his side, he removed it and as far as I know he was fine. Last January he was diagnosed with a inner ear problem, then he started having difficulties in swallowing and was diagnosis with a paralyzed vocal cord. Then they found a massive goiter pressing against his vocal cords so a total thyroidectomy was performed. Now he has been diagnosed with Motor Neron Disease, I might be grasping for straws here but do you think it may be possible that he has Lyme disease? I don’t even know if I am asking this question at the right website, if not could someone lead me in the right direction I would be forever grateful.
Thanks,
Laura
Laura,
It certainly resembles neurological Lyme. Even though 3 years have passed, if it is LD and you defer treatment, curing it with antibiotics becomes more difficult and he faces the possibility of it becoming chronic. I strongly suggest seeking out a Lyme Literate doctor. A proper Lyme test and clinical diagnosis are essential before dismissing LD altogether. And please be careful, most all doctors claim to be Lyme Literate even though today’s medical journals are just beginning to learn about the disease.
Good luck,
Rob
I have advanced Lyme and now my kidneys seem to be failing. Does Lyme very often attack the kidneys?
Susan,
Lyme is such a random disease that it may be causing kidney problems. But, I would suspect that the meds are more the culprit. I know that more liquids can only excacerbate your torture, but do you drink cranberry juice regularly? It might help.
Rob
My kidneys now seem to be failing. Does Lyme very often cause kidney failure in people? I know it does in dogs.
Also, I was around lots of wild birds such as geese: Do they carry Lyme/have many ticks?
Birds, not deer, are the biggest cause for spreading the disease so rapidly.
My husband was diagnosed by two different drs with having ALS. The first diagnosis was made in April of 2011 and the second in September. His symptoms acually started in mid 2010. Just a little shoulder soreness in one shoulder. It came and went over the next few months. By December of 2010, he was having difficulty lifting his arms over his head. Know the muscles in his arms have shriveled drasticly with the exception of his triceps, which have only shrunk a little. He has lost all muscle tone to the shoulder and a lot to the back and chest. His legs have started getting weaker and shrinking and he is also starting to have some problems breathing. His swallowing however is fine, though his voice has gotten weaker. He has been tested for a veriety of things including LD. He was acually tested twice for LD. The first test was done April 2011, and was a Lyme Sero REF and was negative. The second was done October 2011 and was a Lyme IgG/IgM AB wich was negative at <0.91.
We do not beleive that it is acually ALS. My husband is only 28 years old. Ticks, fleas, mosquitos, and practicly any thing that crawls, flies or bites absolutely loves him. He has always worked outdoors and been into hunting and fishing all of his life. Where we live, in central Georgia, we are surounded by wooded areas and are constently in contact with areas brone to ticks and fleas. Where he used to work, they would be constently cutting back bushes and trees on the side of the road. Always outdoors.
Just in your opinion, given the time-delay between the onset of symptoms to first diagnosis, do you think that the test could have been wrong? If so, what would be the best way to find a good LLD to try and dig a little deeper?
D,
You are absolutely correct in challenging the doctor’s prognosis. Your husband is much too young to be experiencing a disease that generally afflicts a much older age group.
Since he loves the outdoors, I assume he was not a complainer about pains and health problems. Well, at least until this nightmare became intolerable. If true, this is very common with Tick-borne infections (TBI). I have talked to a number of very athletic people who rarely complained and now have advanced LD. I believe this is because without early treatment, the disease festers until eventually it causes neurological damage. At this Stage-3 LD, the patient will most likely require long-term treatment,
LD research and understanding is still in its infancy. This implies that the average doctor knows quite little about it. Of course, nearly all doctors will claim differently. Also, most Lyme Tests are inconclusive, so they will only add to the confusion. If your husband reacts positively to antibiotics, this can be a tell-tale sign of TBI. But please, if you do go on these powerful drugs, hit them hard otherwise the surviving pathogens will mutate and become resistant to the antibiotic causing greater problems later on.
As for his breathing problems, Babesiosis, also a TBI, is like malaria and generally affects one’s respiratory system. For more info, you can read http://lymehandbook.com/2010/07/26/malaria-like-disease-appearing-in-new-york/
Keep pushing and remain assertive,
Rob
My uncle was recently diagnosed with ALS, he’s 45 years old and has always been somewhat active, though his eating habits leave much to be desired… His symptoms started with numbness of the tongue and then quite a large amount of weight lose and loss of most feeling in his hand. He’s had these issues now for 8 months before telling our family, and before the doctors finally diagnosed him with ALS… I’m holding out hope that it could be something else, and would like to get him tested with a recommended LL Dr in Michigan if you have any suggestions. I’m also trying to change his dietary habits (pizza and mountain dew should not be the main diet of an adult male of his age) and anything I can think of to get him and my family through this trial. Hope is pretty much all we have right now.
M,
I am not familiar with the dietary constraints of ALS, but if it is LD, he should try to:
• Exercise often. It is believed that the spirochetes don’t like oxygen, so oxygenating the body might help.
• Eat plenty of natural antibiotics like garlic. But if he does, remember to replenish the good bacteria (e.g. acidophilus).
• Eat anti-inflammatory foods like blueberries. It might relieve some joint pains.
• Likewise, avoid inflammatory foods like breads, pastas, etc.
• He might try the Vit C and Sea Salt regimen, but be careful. Too much salt in the diet is dangerous.
If these ideas are succeeding, he might experience some severe Herxing. Though torturous, it should be a good sign; the spirochetes are dying.
All the best,
Rob