posted
I started thinking last night - the latest research I saw presented by the NIH on CFS - they could actually differniate between sudden onset and slow onset patients by genetic markers - Since, a high proportion of CFS people actually have lyme disease - I was wondering the following:
Do you feel which of the following is more true:
A - You probably contracted lyme disease as a child, got better, and was later reinfected or you contracted lyme as a child and never fully recovered or got worse.
B - You had immune system irregularities as a child and later was bitten and contracted lyme.
Or -
C- Was always healthy until contracting LD as an adult?
***I think this may be important because it may explain why some people recover with a month on abx and some do not - also, they have found that in cases of MS - individuals contracted a virus as children that later (maybe with a particular trigger) developed into MS.
I think I fall into either A or B.
Posts: 78 | From connecticut | Registered: Jan 2005
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posted
Hey, I'd be sooooo grateful if you could link me to that NIH work on sudden vs slow onset CFS. I've got to read that finding. I've spent many months researching pathogenesis of lyme etc, and slow vs sudden onset is one of the big issues in my mind.
Posts: 62 | Registered: Oct 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I'm A. I never got better and reinfected, but I had varying degrees of "outbreaks" for the past 18 years. However, I do believe that other somewhat common infections sort of broke the camels back.
My mother says I was a healthy child until I got bitten when I was 12. I did develop allergies and asthma about 2 years before I was bitten.
I'd definitely say I was slow onset. I didn't have obvious symptoms until about 18 months after the bite. Those symptoms eventually faded enough that I stopped pursueing a diagnosis.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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I was bitten many, many times, both growing up in NJ, and then later in VA when I used to visit a farm regularly.
The last time I know I was bitten was at least ten years ago. I started having symptoms about five years ago, after a period of extreme stress.
I seem to have a very strong immune system. Never catch anything, and have rarely been sick (though I have bad allergies).
So I think it's possible I had lyme for a number of years without having any symptoms, and the stress lowered my immunity to a point where the lyme came out.
Or, I was bitten again five years ago and didn't know it.
I'm wondering what correlation can be drawn between when you were infected and length of treatment? I've been in treatment for more than two years, and haven't seen much progress yet.
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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posted
hodologica - Hi - I've been trying to find something for you - its kind of weird that it is not readily out there - I actually went to a presentation at Yale where I learned what research they were currently working on.
I know I had found it before online, and printed it but in an effort to stop freaking my husband out with all my books and print outs on all this stuff - I periodically throw stuff out - assuming I can find it again - if I need it.
What I did find, I will post - its a blurb from the CDC website - I will still try and find more - but what you will find is interesting because the CDC is confirming that there is definately a diagnostic marker for CFIDS - yet, all the other garbage out there is still saying there is not (allowing psychologist still to have their papers published on the subject)!
Using a case control design, we have shown that microarray profiling of PBMC gene expression can distinguish CFS from non-fatigued subjects and have published a manuscript. We are currently using this technology to screen for biological correlates of CFS in population-based studies and model systems. Some were discussed above and the remainder are reviewed below.
Analysis of symptom patterns in CFS using gene expression methodologies. Although gene expression patterns can distinguish cases from controls this does not address possible causal associations. CFS is difficult to study using classic case control designs because incident disease is uncommon and hard to identify. Prevalent cases in most studies have been ill an average of five years so are enrolled into studies many years after causal associations occurred. We are focusing our current gene expression profiling effort to detect markers of disease activity, elucidate physiologic pathways, and clarify factors associated with sustaining illness. This will permit precise identification of cases for case control studies and will point to specific hypotheses.
Persons with CFS can be subgrouped according to whether illness begins acutely or gradually. In addition to different onsets, persons with CFS in Wichita appear to fall into two distinct groups based on symptomatology. We have examined PBMC gene expression patterns of 3,800 genes on 26 women classified as CFS in the Wichita surveillance program. Seven, all with gradual onset illness, fell into one symptom group. The remaining 19, 13 with a gradual onset and 6 with a sudden onset illness, were in the second group. Testing is complete and we are analyzing the data using the CDC MADB bioinformatics program (described below). We are comparing expression levels between different definition groups on a gene-by-gene basis to identify biologically relevant patterns. The analysis groups include, 1) symptom groups, 2) onset type (e.g., gradual versus sudden), 3) duration of CFS (e.g., less than 7 years or greater than 10 years, 4) number and type of symptoms and 5) blinded unsupervised cluster analysis to see if gene expression patterns identify ``gene'' groups independent of symptoms.
Posts: 78 | From connecticut | Registered: Jan 2005
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posted
Hi! If any of you are members of the "disinissues", disabilty insurance issues, you received yesterday/today a survey poll from Mary Schweitzer, phd, who is a CFS patient.
She has been on the CFS committee of Dept. of Health & Education for last 17 years. She goes again April 4 ... topic this time is DISABILITIES.
I asked her to bring up lyme disease, but each patient is limited to 5 minutes. All 3 drs. live in lyme country.
I'll ask her if she might come here & give a report of this meeting, if you would like.
She may have an answer for you Brodius...MAYBE. She has really done her research.
A question she addressed to me is, why have there been no NIH LYME disease committee meetings?
She said the only other group is AIDS - blood borne related disease and sugested that lyme fell into that category due to "blood borne".
She mentioned former New Jersey's Gov. Christi Whitman, I'll have to check the spelling since I misspelled it to her & she correct me..I can't remember right now.
Let me know IF you are interested. Start a NEW thread addressed to me about CFS, and then I can follow up w/her after April 7th .. time to relax after doing 2 surveys prior to the meeting.
Betty G.
Posts: 1 | From US | Registered: Aug 2015
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posted
Hi! Betty G - are these online polls and surveys? I guess the overriding question for her - would be how this research that has come out on CFS could be applied to indiviudals with Chronic Lyme - especially since it is widely accepted that many dx with CFS actually have Lyme. And your issue, of why the NIH does not have a committee designated for Lyme??
I'm going to have to read what I need to do again - as this online communicating stuff is relatively new to me!
Posts: 78 | From connecticut | Registered: Jan 2005
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posted
Just to let you know headpain - I was sudden onset - I went from overly functioning - athletic, second year of law school, working, single mom of two - to completely disabled in a matter of hours - however, I had a weird illness when I was seven - shingles, eye twitches, crying jags etc. and a history of chemical allergies/intolerances - so, I think either I had a tick bite (grew up in NJ - outside all the time) when I was younger and was never diagnosed or, something wasn't right with my immune system - children do not normaly have recurrent shingles. But btwn that time and later as an adult - I was otherwise healthy - and my onset was sudden, furious and debilitating - to which I am still disabled five years later.
Posts: 78 | From connecticut | Registered: Jan 2005
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