Old 10-01-2016, 12:42 AM #1 (permalink)
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Smile Misdiagnosed 4 times

Hi. I want to share my ALS journey with others to let them know that it is possible to be misdiagnosed with ALS.

Since my story spans 8 years, I will try to give a brief synopsis of what cured (yes, I said CURED) me.

It started in 2009 when I lost strength in my left hand. It quickly spread to my shoulder. I was diagnosed at Yale with ALS. I was 49. My neurologist immediately said "don't try antibiotics, they don't work and just make you sick" Hmm, why would I try antibiotics? He didn't elaborate.

So after considering suicide, and a week of Ativan, my husband and I started researching alternative diagnoses on the internet. Turns out that Lyme disease is commonly mistaken for ALS. I had had a negative lyme test so I thought that wasn't it. The more we read, the more we realized lyme tests were often inaccurate.

Now to find a doctor who would treat me with a negative lyme test. Luckily I found a doctor who was very experienced in lyme and coinfections who immediately gave me doxycycline. I had a dramatic reaction. I felt euphoric and immediately regained energy and leg strength. Unfortunately, I also got sick as a dog. I learned later that this is from massive die off from the lyme. I could only tolerate doxy for 4 days.

Next, my doctor tried rocephin via a picc line for 9 months. I was severely allergic to it and broke out in painful hives all over but it worked so I slowly was desensitized to the drug until I reached the usual dosage per day. My insurance switched me to cephtriaxone to save money, which didn't work as well but it still helped my strength and energy. The picc line lasted until it got wet in the shower one day and I almost died of sepsis.

Next Doctor. I tried another famous lyme doctor who prescribed massive antibiotics at the same time. At one point, I was on 5 powerhouse antibiotics at one time. Unfortunately, she didn't know how to counterbalance the rest of my system and I wound up with CDiff and was very sick from that for 6 months.

Next Doctor. I found another lyme doctor who was very young and passionate about lyme treatment since he has been infected himself and had gotten better. He was able to balance my system with supplements while trying a few antibiotics at a time. I got back on track but decided to try Doxycycline again.

Big Mistake. This time, doxy affected my breathing ability. Until now, my breathing had been unaffected. Within a month of taking doxy, I started not breathing at night. Over the next year my breathing capacity deteriorated to the point that I was close to being put on a respirator. During this time, I was also researching other ALS patient stories and came across a woman who had started an ALS online support group. She emphatically advised against taking doxycycline. Everyone she knew that had taken it died quickly of breathing difficulties. Wish I'd seen that sooner.

So during all my lyme treatments, I went to various other neurologists hoping for a different diagnosis. Yale, Mass General, and MKMG all said ALS. Mt Sinai didn't do any tests but just listened to my story and since I had gotten improvement with antibiotics, they didn't think it was ALS. That gave me hope anyway. I had 8 EMGs, 2 CAT scans, xrays, countless blood tests, spinal taps, a bone biopsy etc. can't remember everything. Nothing else showed up so they just said ALS.

Eventually, my breathing and body weakness progressed to the point where I could barely walk and needed a neck brace to hold up my head. We read about a treatment called IVIG and convinced a neurologist to try it although he didn't believe in lyme. Well, it worked, partially. I have been on IVIG, twice a month, for almost 3 years now. Its horribly expensive but luckily we have awesome insurance so I was very fortunate. I got better but was still having a hard time breathing at night.

In the meantime, my lyme doctor was still testing me for infections at specialty infectious disease labs and we finally got a positive result. I had a severe infection of a parasite called FL1953. Here is a link that describes it: FL1953 Protomyxzoa Rheumatica: An Introduction

Finally, an answer!!! The doctor that discovered this parasite believes that this is the cause of ALS. Seems simplistic, but guess what, I GOT BETTER. My lyme dr started me on Alinia, a strong anti malaria drug, and my breathing has improved dramatically. I also got a dental appliance for sleep apnea and now I don't even need the cpap at night.

So that's basically it. The combination of IVIG and Alinia are the magic combo that I believe has healed me. It makes me wonder how many others have been diagnosed with ALS that didn't pursue lyme treatment or weren't well enough to tolerate it. Insurance is a big obstacle too, they certainly don't want to pay for and I'm sure they penalize doctors who prescribe IVIG.

I'm not a healthcare professional, but I'm a professional patient. My opinion is that all autoimmune diseases have unknown causes. Lyme (and a myriad of coinfections) hide in our bodies and disguise themselves as healthy cells. Our immune system can't tell them difference between the parasites and the healthy cells so it attacks the healthy ones. Depending on your genes, that's the autoimmune disease you end up with.

I've watched 2 parents die of Alzheimer's and both had lyme. Their symptom progression was similar to my own except for the brain involvement. My brother just had a scary bout with guillain-barré syndrome and has recovered with IVIG as well.

This has been a giant game of chance. So many of my doctors have taken huge career risks in treating me and I am very grateful. Because of that, I am not able to share specific doctor's names but I can tell you what treatments have worked for me. And, yes, I can say I survived ALS. Keep fighting.
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Old 10-01-2016, 05:47 AM #2 (permalink)
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Default Re: Misdiagnosed 4 times

I'm a little confused, NotALS. You said you were misdiagnosed with ALS, and also say you survived ALS, and your last line says you do have ALS. In the middle of your post, you say that you were healed.

Are you saying that you have been cured of ALS?
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Old 10-01-2016, 06:42 AM #3 (permalink)
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Default Re: Misdiagnosed 4 times

I'm a little confused too I must admit.
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Old 10-01-2016, 08:43 AM #4 (permalink)
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Default Re: Misdiagnosed 4 times

Even before I was diagnosed in August, 2015, I started listening to peoples' stories on ALS, Lyme, autoimmune diseases, etc. I've always had a positive ANA and have been diagnosed with Hashimoto's, Meniere's (which I don't believe I have) and fibromyalgia. These diagnoses came from very reputable places (Mayo clinic, University of Pittsburgh Balance Center, U of F Teaching Hospital) I also have a strong family history of autoimmune diseases (my only sibling has Lupus and both parents had RA), niece developed Type 1 diabetes at age 2, grandfather died of unspecified disease that resembled post-polio syndrome, uncle killed himself but reported MS-like symptoms...the list goes on.

Nobody knows what causes, what treats, or what cures ALS. Nobody knows why some present with atypical symptoms first, then go on to be diagnosed with ALS. There are just too many unknowns out there and I applaud anyone willing to try alternative treatments, counter intuitive treatments and anything else they believe might uncover the underlying cause in hopes of slowing, stopping, or reversing progression. Especially, if their insurance will pay for it.

Therefore, I don't dismiss the OP's post or question the accuracy, wording, or message. I'm delighted that something worked for her and she had the guts to share it. Maybe there is someone on here that could benefit from IVIG. Some of us are swallowing Tudca and taking the Lunasin Protocol without knowing what in it is has the potential to help. Why not?

Thank you for posting your story.
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Old 10-01-2016, 01:01 PM #5 (permalink)
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Default Re: Misdiagnosed 4 times

1) I am happy that you have improved

2) I take strong objection to your comment ""Lyme disease is commonly mistaken for ALS" as _I_ believe that this is FUD from unscrupulous 'doctors'

3) You didn't 'survive als', you survived Lyme [disease],
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Old 10-01-2016, 03:11 PM #6 (permalink)
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Default Re: Misdiagnosed 4 times

Ok. Just wanted to let fellow patients know that someone who was dxd with ALS multiple times did survive and improve with antibiotics and IVIG. I never tested positive for lyme or coinfections, just FL1953.
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Old 10-01-2016, 03:27 PM #7 (permalink)
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Default Re: Misdiagnosed 4 times

I think "I can't believe I have ALS" is your signature which led to some of the confusion. It is great you are better Am I correct that you do not think you currently have ALS? Do you think you ever did? Or are you saying you never did and the doctors who said you did were wrong all along?

I seem to remember there was a time they rescinded the ALS and said MG? I bring this up because I am thinking that yes you were apparently misdiagnosed but there were some atypical things that happened in your course right along. Is that fair to say?

Whatever, I am happy you are better
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Old 10-03-2016, 07:08 PM #8 (permalink)
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Default Re: Misdiagnosed 4 times

Thanks Nikki. I believe the infection FL1953 causes ALS in people that have the necessary gene(s). I have the infection but not the exact sequence of genes. If I hadn't pursued lyme treatments and ivig, I would be dead by now and I would have been classified as a death caused by ALS. It depends on what dr you ask if I have ALS.
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Old 10-03-2016, 07:13 PM #9 (permalink)
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Default Re: Misdiagnosed 4 times

Have you or will you contact Dr Bedlack? if it is your true belief you were cured then you should
Alsreversals.com

However do you really think you had ALS or a mimic?That is the question of course. It would be interesting to see what he makes of it

You titled this misdiagnosed and have told us you were misdiagnosed before and had mg so there have been questions before in your diagnosis

IVIG is known to help some mimics and I see in 2013 you posted saying IVIG was helping you greatly

Your course really seemed atypical and at one point you said 2 doctors said ALS 2 said no. That is really unusual here. Most say second and further opinions all concur after being told ALS.

Again great you are better

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Old 10-03-2016, 11:56 PM #10 (permalink)
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Default Re: Misdiagnosed 4 times

Yes, Please contact Bedlack. He answers his e-mails promptly. He answered two of mine and I'm not his patient.
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Old 10-04-2016, 02:26 AM #11 (permalink)
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Default Re: Misdiagnosed 4 times

Sorry, I just found this thread. Seriously, NA? When I read your statement that doxycycline is some kind of super-dangerous drug, and several other highly questionable ones, it inspired me to look more closely at this FL1953. Here's an article about its leading proponent, Dr. James Schaller, a child psychiatrist! I don't think I can write anything clearer, but if anyone is interested we can run through the Lyme connections and commercial interests involved.

I'm happy that you're happy, NA, but please don't come here and tell people you were cured of ALS when all the evidence is that you never had it, and P/CALS generally lack the time, energy and money that charlatanism requires.

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Old 10-04-2016, 12:40 PM #12 (permalink)
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Default Re: Misdiagnosed 4 times

Considering that per our own Dr, who is the program Director for the University of MN ALS clinic, states that about 3-5% of people diagnosed at a Certified ALS Center do not have ALS, and that the stat hits 10-15% if diagnosed nearly anywhere else I think it is not uncommon to say that ALS was "reversed" or "cured" when in fact the patient never had it. Diagnostics are much better than they were thirty years ago (even if they are a process of elimination, by and large) but still poor compaired to many other diseases. It makes fakery much easier.
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Old 10-04-2016, 01:30 PM #13 (permalink)
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Default Re: Misdiagnosed 4 times

Quote:
Originally Posted by lgelb View Post
but please don't come here and tell people you were cured of ALS when all the evidence is that you never had it, and P/CALS generally lack the time, energy and money that charlatanism requires.
Moved and seconded!

Again: we're glad you do not have ALS but strongly feel your claim (belief) of being 'cured' is based on faulty logic and misleading for those who actually have ALS.
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Old 10-04-2016, 03:15 PM #14 (permalink)
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Default Re: Misdiagnosed 4 times

Hi NotALS

I’m happy to hear about your positive outcome after suffering the trials of multiple misdiagnoses for ALS. Whether your symptoms were due to spirochetes, other organisms, or other pathology is not clear. What is clear is that your neurologic symptoms improved following multiple treatments. However, that a causal relationship exists between your clinical improvement and treatment was not objectively established. Although it is true that Lyme's disease can cause neurologic symptoms that can mimic ALS symptoms, and lead to a misdiagnosis; that is not the same thing as intimating that Lyme's disease or parasites causes ALS or that Lyme’s disease is commonly misdiagnosed as ALS by an experience neuromuscular specialists. Certainly both Lyme's disease and ALS can both present with some symptoms that mimic some of each other’s symptoms. As a result, errors in diagnosis can occur. For this reason, part of an ALS the workup should include studies that rule out Lyme’s disease as well as getting a second or even a third opinion buy an ALS expert.
The references found at the end of this post should be useful in differentiating Lyme's disease from ALS and may help clarify some of the confusion surrounding this subject. I think that it would be a great disservice to PALS to present them with the false impression that ALS can be successfully treated with antibiotics or IVIG or that they been misdiagnosed and actually have Lyme’s disease rather than ALS without solid evidence. On the other hand, your experience supports the point that each of us must learn a great deal about ALS and the differential diagnosis and be our own advocate while partnering with our physician.

http://alsuntangled.com/pdf/ALSU1.pdf


https://www.researchgate.net/publica...eral_Sclerosis

Best wishes

Eliot

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