oops! Lymetutu
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.
I think you are right that many chronic Lyme patients have had this far longer than they suspect. Many were likely born with it.
I may have been born with it and then reinfected at the age of 8.
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oops!
Lymetutu
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.
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
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)!
Anyway here is what I have found = it just breifly notes the subcategories by onset - the other that I will still look for you describes this in greater detail..
www.cdc.gov/ncidod/diseases/cfs/program-updates/cfs-uptdate-031703.htm
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.
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.
I'm going to have to read what I need to do again - as this online communicating stuff is relatively new to me!
Was very active, healthy & energetic before this. Sick for 2 years now.
CFS? Lyme? Who knows....Abx haven't helped. Removing amalgems haven't either.
All tests normal....of course.
Waiting to wake up to a miracle healing...or I give up.
quote:
Originally posted by HeadPain:
Is anyone sudden onset? I definitely was. Went from normal to disabled in 3 weeks.
Hi fellow Texan! 
Alot of people here were sudden onset. I think they must be sleeping or something!
When you say nothing's helped....How many months or years are you talking about?
Recovery can take many months or MANY years, depending on various factors. So don't give up!
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oops!
Lymetutu