Patient-Formulated Lyme Disease Survey Draft

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Sat 9 Aug 2014 7:36

Duncan - that was a really well-phrased question about listening versus listening when a response is expected. It is actually much more difficult for me to listen when a response is expected of me - I suppose it's more stressful?

The more specific the questions get, the more I see I have in common with other Lyme/PTLDS sufferers. It's funny because these things are hard to explain to people who have not experienced the exhaustion associated with these mental exercises.

Please include among the "wrong word choices" emotions the option "frustration".

And the next one:
Do prolonged bouts of concentration or focus cause fatigue or cognitive issues? __No__Yes. If yes, please indicate where appropriate, and please identify the appropriate time frame that pertains to when symptoms begin :
___Driving. Please explain:________________________________________________
___Watching TV. Please explain:_____________________________________________
___Watching a loved one in a school sport.Please explain:____________________________________________
___Precision-required processes such as knitting or gardening or measuring. Please explain:______________
___Other. Please explain:_____________________________________________________________________________________________________________
Maybe add prolonged social contact or situations - such as a family holiday dinner?

Camp Other said:
But anonymity brings with it its own issues, which I brought up earlier: How does one confirm that someone has seen a doctor for their diagnosis and that they currently are being treated or have recently been treated by a doctor for Lyme disease?
I think the longer the survey is, the fewer skewers there will be. It would take too much time for a casual passer-by to put in the effort. Plus, all the VERY specific lab blood work questions will give them away. I am a big fan of as few write-in questions as possible, but it might be a good way to weed out anyone who hasn't truly had the blood-work done or who might be inclined to lie about their results.

Anonymity is important to encourage patients to fill out the questionnaire, in my opinion. But, this questionnaire may turn out to be a rather useful tool for doctors to evaluate the status of patients' health, in which case, of course, the person's identity would be known to the doctor.

Remember: a person may live in a non-Lyme-endemic area and may not have been given a blood test, but they have a majority of the symptoms of it - possibly even including the bulls-eye rash. After the data is tabulated, it can be sorted by blood test results or suspected Lyme WITH the bulls-eye rash.

This way we may be able to catch more cases across the US and Canada and Europe where doctors are telling people Lyme does not exist.

Duncan - Ever since all this brain and spine inflammation, it is so strange - I can talk about complex mathematical concepts, but cannot count 30 days until my next medication refills because some months have 31 days, and for some reason, trying to count that out on a calendar just escapes me. (Luckily, I have a very nice pharmacist to assist me!)

There are many examples like this for me. That's why I was so excited to read about the results of that Chronic Fatigue (ME) experiment that SPECT (or was it MRI?) scanned the brains of CFS/ME victims and found that subjects had inflammation in very specific regions of the brain. The part of the brain responsible for simple every-day tasks was inflamed while another region responsible for abstract thought was not.

So, yes, I think different types of mathematics must be done in different parts of the brain - it's not all left-brain/right-brain anymore!

------

Duncan said:
I mean, it's not just which region or compartment Lyme may gravitate toward, but if there is such a thing as Lyme vasculitis for instance, the damage could be perfused, at least theoretically.
I'm sorry. What do you mean by this?

duncan
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by duncan » Sat 9 Aug 2014 12:53

Velvetmagnetta, I was trying to explain my understanding (admittedly just a layman) of a couple theories behind global presentations of NB. I believe one way is for Bb to permeate major areas the brain, causing actual swelling of the brain, as in Lyme Encephalitis or Encephalomyelitis. I think this is more commonly associated with acute cases, and we are talking about pronounced swelling, sometimes across broad swathes of tissue. Another hypothetical example of this might be diminished blood flow to entire regions of the brain due to inflammation of the brain's vascular system, i.e. Lyme vasculitis. This might show up in a SPECT Scan (as areas characterized by markedly reduced blood flow) or in an MRI as cerebral shrinkage or atrophy.

So because the impact is over broader areas, it could be argued the associated symptom cluster might be larger. Sometimes the damage may show up with the aid of imaging technologies long after the inflammation has subsided.

This is different than when the disease appears limited to specific areas of the brain, as in the 7th cranial nerve - resulting in facial palsy - or the 8th cranial nerve - resulting in vertigo/dizziness because this is the vestibular system, which governs balance.

Of course, there is nothing that I know that prevents the disease, or processes triggered by the disease, from impacting multiple areas within the brain.

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Sun 10 Aug 2014 3:29

So you're suggesting that there may be overall damage to the entire brain or to large regions of the brain, right? And this may manifest itself in myriad cognitive deficiencies...

...But what I'm seeing more and more as we all reveal our specific deficiencies is that we have very distinct deficiencies in common!

OMG. Did that make any sense?

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Sun 10 Aug 2014 3:42

Some more symptom questions -

Over-Sensitivity of Senses:

a) not sensitive at all
b) somewhat sensitive
c) very sensitive
d) extremely sensitive

-------------------------------- At Your Worst------At your best

Light Sensitivity (Photosensitivity)........._____________............___________

Hearing Sensitivity (Hyperacusis)..........._____________............___________

Smell Sensitivity (Hyperosmia)............. _____________............___________

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ChronicLyme19
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by ChronicLyme19 » Mon 11 Aug 2014 19:54

Hi all, I'm new to the forums. Just got done reading the last 15 pages...phew. Anyways, here's my 2 cents:

Have you ever considered working on this survey prototype in a google doc? You can have one editor, and everyone else can view changes real-time. It also has a built in chat function while viewing for discussion. You could even create separate working docs for the different symptom subsections and let certain people work on those, rather than having one person work on everything.

I agree that if your survey is long, you should have a save button.

The blood work trend questions are great. I have been tracking my own bloodwork pre- and post lyme and there are definite changes. My bloodwork has returned closer to normal as I recover and symptoms improve.

Also the immune questions are great too. I'm like DLF and have developed hypogammaglobulinemia in my second year of lyme. I had more bands positive, but since getting HGG some IgG bands have dropped off, while my IgMs were still positive. This is also another reason why you can't just go by sero-positivity, because then you risk not including the immunodeficient.

Re-self diagnosis discussion
Everyone lies, so there's no way to ensure all the data points in the survey are 100% correct. You have to be careful with how you define “self diagnosis” too. You guys are forgetting that doctors can make a diagnosis of Lyme disease without a patient being sero-positive. You can also have a patient who is sero-positive, but does not fit the fully CDC reporting criteria. What if the doctor refuses to acknowledge chronic Lyme, despite a patient with repeated long term sero-positives and active symptoms? I say you have a question to help identify this subset, which will help sort out the two groups for data analysis at the end, but you still need the question in there. There may be crap data in both pools. And the data will be skewed by how far reaching your survey is too. Many lyme patients are so sick they can't fill out a survey, you have to be careful for sample bias.

All said this is a great idea if we can do it well. It would be a good pilot study many to help guide researchers and doctors as to which things they should be paying more attention too, or what things need to be studied in further detail.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

duncan
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by duncan » Mon 11 Aug 2014 22:10

Hi ChronicLyme19, and welcome both to the Forum, and to this patient-centered survey effort.

You suggestions are all good ones, and we will try to incorporate them as best as we can.

Not sure about google doc. We have some good tech people here, though, and it's a fair question. Phyfe who is taking on the formatting process, is out of pocket, and she cannot access any computer. Hopefully for only a short time. But if it makes sense, and we can somehow do it, then we'll certainly consider it.

It's great to have you on board!

Henry
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by Henry » Tue 12 Aug 2014 0:23

If you want to make this a "research tool", don't you think it would be worthwhile to include treatment regimens found to be beneficial for those who tried them? How long did the beneficial effects last? By contrast, what are some of the treatment regimens that did not work well? Complications?

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ChronicLyme19
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by ChronicLyme19 » Tue 12 Aug 2014 2:17

I would love to data mine every Lymee's case, but the problem lies in the processing of unstructured data. I'm hoping someday we'll be able to do it as more of the medical records are being stored electronically. Companies are beginning to work on ways of data mining unstructured data, like medical notes from doctors, and drawing conclusions that we as people don't see because we don't have memories that large, but they are still only in the early stages.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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LHCTom
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by LHCTom » Tue 12 Aug 2014 19:33

Is there a copy of the latest draft available?
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902

duncan
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by duncan » Tue 12 Aug 2014 20:11

Phyfe has been in the hospital since Sunday, but last I heard hoping to return home tomorrow barring something unexpected.

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