Tested positive for ACHR ganglionic neuronal antibodies.

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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby skonen on November 27th, 2012, 3:07 am

I dont know how medically inclined you are or anything, but one of the millions of things I've been entertaining since this started has been my extremely powerful course of Augmentin 800mg for 10 days just prior to onset of symptoms. Augmentin is unique in that it contains "clavulanate Potassium" ... so its not just Penicillin but Penicillin + clavulanate Potassium. I did find one web site that associates the medication in its "600mg form" with onset of Hyperkalemia (excessive Potassium levels). I was on the 800mg course. And Hyperkalemia I believe is heavily associated with Neuromytonia. Additionally, on my first set of bloodwork about 2 days after this all started, my only abnormal test result was excessively high Potassium levels. Everything else was normal. Any thoughts on this


Medications can throw a lot of our natural body behaviors 'out of whack', but I am not aware of anything specific pertaining to the antibiotics you mentioned causing neuromytonia... Personally I do not think your high potassium levels would have been related to any form of neuromytonia if they returned to normal levels after finishing your prescription, and were normal prior to taking it. I think the information that would be more relevant is what kind of infection you were battling that resulted in the medication being prescribed. But again, medications can have bizarre effects across many individuals, so I don't think there is enough evidence to either prove or disprove that the medication had an effect resulting in your twitching.

I hear statements like this a lot. Just to play Devil's Advocate here ... what is the thought process behind statements like this? That the doctor is infallible? That if someone requests that the test be run "anyways", something bad might happen? Of course both of those sentiments are nonsense.


I believe a patient should be an active contributor to his or her treatment process within reason. However, in this particular case I would advise that if your doctor(s) see no indication of malignancy that you do not pursue aggressive testing outside of what is recommended by your provider. The reason behind this advice is that such tests are not always harmless, many such tests can be intrusive or deliver a heavy dose of radiation (increasing your chances of future complications). For example, it is considered to be not uncommon for young people to have lung nodules in chest x-rays... however to confirm whether an apparent mass is benign or malignant often requires a biopsy, which presents its own physical and non-physical risks. These false-positives and associated risk are the primary reasons to push people to not pursue an exhaustive cancer screen if there is no hard-evidence that a malignancy is reasonably likely to be present, and if the patient doesn't meet major risk factors for such disease.
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby BFSBurger on November 27th, 2012, 2:16 pm

skonen wrote: Personally I do not think your high potassium levels would have been related to any form of neuromytonia if they returned to normal levels after finishing your prescription, and were normal prior to taking it.

The high potassium test was 3 weeks after completing the Augmentin 875 and about a week and a half into my twitching. So it was well after. However I did have a bottle of Poweraide before the blood test which contains potassium, so maybe it was that?

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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby skonen on December 16th, 2012, 4:11 am

I'm curious, did you ever have the ACHR neuronal test performed as you planned BFSBurger? If so I assume they were negative due to the lack of update? :)

Here's an update on my followup since the ACHR ganglionic neuronal antibodies were detected:

After the test came back positive I was scheduled for a PET scan and was also in the process of being referred to Mayo by my neurologists. But when it came time to do the PET scan the radiology team decided against it because I've been exposed to so much radiation in the past year (I had over a dozen CT scans while admitted to the hospital in June), and they felt it was unlikely that I had a tumor. Instead they decided to perform a single Chest CT scan with contrasting agent to check for lung cancer...

I found out last week that the test results all looked normal. In light of this the neurologist cancelled my referral to Mayo and sent me to a neuroscientist associated with UW, who then performed a battery of tests to check high-level brain functions such as Memory, Reasoning, Comprehension, etc... I received those test results yesterday and they came back well above average.I was told this meant that while the underlying illness was affecting central nervous systems such as sweating, heart rate, eye sight, motor skills, etc... It did not appear to be directly impairing my cognitive abilities. Instead the neuroscientist suggested it was likely due to stress overload from the underlying illness interfering indirectly with execution function. She referred me to a psychologist who specializes in 'illness anxiety'. Meanwhile my neurologist will follow-up with me in January. He has stated he will likely diagnose me with Issac's Syndrome or another to be unnamed syndrome (I won't put the name here because it is associated with both minor and terrible illnesses alike, but in cases such as this, is considered idiopathic).

Whatever my illness is, it appears to have some form of improvement followed by relapses. Though the mechanism is unclear, as MS has been almost entirely ruled out. I've had my symptoms for almost 1 year now (~7 months twitching/pain/stiffness/sweating, ~11 months of ringing in the ears)... So I'm fairly optimistic it is not caused by something more sinister, but will continue testing to attempt to identify a cause and potential treatment path.
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Re: Tested positive for ACHR ganglionic neuronal antibodies.

Postby BFSBurger on December 16th, 2012, 3:15 pm

skonen wrote:I'm curious, did you ever have the ACHR neuronal test performed as you planned BFSBurger?

I dont know what I got tested. I gave the doctor a list of antibodies I wanted checked, and he did his job (apparently what doctors are trained to do, better than anything else): He said no.
He said it would be expensive. What a great reason. Want my car? Take it. Id rather have peace of mind, or a treatment.
So he refused.

He did however run an "ACHR" test. But I dont know if its the same one. It says "ACHR Modulating Antibodies".

This was negative. He also agreed to run HLA Antibodies 1 and 2. That is still pending.

You know, the more I read about this, the more I see that a full immunological workup and full pathogen check is warranted. Even for all of us.

After our clean EMG's I think a lot of us would do some good to see an immunologist because if this is an issue of a viral infection or pathogen harassing us, it might be helpful to identify it. I believe all of us have ruled out auto immune problems by various blood tests and MRI. So something is up.

I am working on getting in with Dr. Nancy Klimas who apparently will actually put some effort into determining whats going on with me. Everyone rest assured I will make this community well known to her, and do what I can do get us onto the Radar. What we have is merely a variation of what she deals with every day in CFS/ME/Fibro patients. So im quite sure she will find BFS interesting and hopefully worth looking into. This web site is one big petrie dish of guinea pigs waiting to be examined LOL

She referred me to a psychologist who specializes in 'illness anxiety'.

Nonsense. So condescending. Why doesnt she actually try to help you and refer you to an immunologist or at least a rheumatologist? Someone who will take on the responsibility of actually doing some *RESEARCH* into your symptoms? I hate doctors. Yes - your problem is psychological. You'd much rather be sitting here worrying about why your body is freaking out, than out living life right? You enjoy this. And you need to talk to a therapist because you LIKE creating symptoms that don't exist. Idiots ...

You are aware that CFS matches your symptoms, especially the tinnitus right? Its not like your doctor would know that, but hey, that's why we're here.

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Re: Tested positive for ACHR ganglionic neuronal antibodies.

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