BTW, "Jan" is pronounced like the English "yawn" (but shorter), and I think "Noosa" would be like the English "nose ah" (not "noose ah").Nurse Names: Jan (man), or Noosa.
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BTW, "Jan" is pronounced like the English "yawn" (but shorter), and I think "Noosa" would be like the English "nose ah" (not "noose ah").Nurse Names: Jan (man), or Noosa.
Do you only get it from a tick bite or can you pick it up from someone else? I was working in a hospital when I get sick 2 and half yrs ago, and in contact with very sick nd highly infectious patients, I always wondered if I picked up something from one of them.But it goes way back further than that. what about mosquito's ? I did get a few of them on holidays in Italy the year before I got sick.
Yes Sushi, I noticed the high numbers and wondered about them. Been googling these test results today and most seem to be 4 or 5, maybe even 7. So wondering if 18 and 22 mean I've got it worse, longer etc
I think it's a somewhat indirect measure, based on the current antigen response to the bacteria's proteins?I'm no expert on this this but it might measure the level of activity of the bacteria?
I'm eager to follow you as you embark on new recovery with a "real" doctor!! May I ask if you got any good advice on migraines and hearing loss? I suffer both, too!During the brief chat with KDM, I did get snatches of useful info and pointers, especially in regards to my migraines and hearing loss, he also did a quick examination that hurt like hell, but my still half asleep brain couldn't come up with decent responses or further questions at the time. I just dumbly sat there looking at him!? So yeah, I'm hoping next time I'm more prepared and that I will actually have some input into it.
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It was very helpful, actually! I'm looking forward to reading more about prostaglandins.Oh jeez sorry for the long essay
@Sushi....
But did you have migraines before you got sick, or as a result of gut issues with M.E?
May I ask how he tested for and treated gut infections? Also, did you do a exclusion diet to see what allergies were present?
@Sushi
In fact when I first got sick, every month I had a migraine I seem to worsen M.e wise, until I was completely bed bound after 3-4 months. I have not since got this bad again, in fact I was sure I was dying at that point.
May I ask how he tested for and treated gut infections? Also, did you do a exclusion diet to see what allergies were present?
I don't want to give you false hope but I have certainly heard of patients losing their hearing due to Lyme and it comes back with proper treatment.Just to add for general information, my migraines are a long issue for me, but the hearing is mostly new and rapid decline.
Migraines started in my teens, and my early 20's in uni, were getting much worse and constant. By then I noticed a pattern to them. They used to follow my periods. Hence why I called them menstrual migraines even though they didn't fit in that criteria exactly. In general menstral migraines occur just before or in day 1 or 2 of period. This wasn't the case for me, instead it was at the end, day after the period ended I got v severe and brutal migraines maybe 2 or 3 days long. Always like clockwork I could plot when migraines would occur, using 28 day cycle and add 5 or 6 days. So I was convinced they had to be involved with hormones havoc etc. Over the years, getting worse and worse. By 27 I returned to uni and I was constantly absent and missing assignment deadline dates and exams, clinical placement hours etc. Every single month, losing nearly a week, and the next month rolled again so fast.
Ironically enough I was only getting on top of getting this sorted about the time I got this other crazy sickness (M.E/Lyme?), I've been on hormonal pill and now I no longer getting periods, getting no migraines either. Or at least only one or two a year, for other reasons than hormonal. Beside migraines ruining my life, I always considered myself relatively healthy before, rarely getting flus/colds etc.
I don't know what triggered this illness over 2 yrs ago, I can understand a cause like virus some people have. But in the 6 months before it, my hormones/periods etc went even more haywire. They had always been a pattern and regular even if causing me grief, but in months before I got sick, periods were v late more like 30-35 day instead of always 28days, and now I was getting a migraine at start and end of period. So I was getting even more run down than usual. Rightly or wrongly I do blame this for causing my illness now. I gave KDM a document I made up detailing it all, made headings etc. One heading was possible causes of illness since this is still a mystery. I included hormonal upheavel in months prior and long history of it anyway as a reason, this was what he picked up on and commented that it was not hormonal at all, simply inflammation and something to do with prostaglandins that I need to further clarify with him.
So migraines been a long issue for me, and not necessarily a M.E symptom, but involved somehow maybe. I hope to find out.
As for the hearing issue. mostly new. I did have some tinnitus issues and slight loss in one ear for some years (24/25 yr old), but only barely and wasn't causing much issues except in busy loud environments. I didn't think too much about it as I assumed it was genetic, both an aunt and uncle have some hearing loss in one ear. Perhaps it has been gradually getting worse over years, but it is only in last year has rapidly declined and esp in few months run up to xmas. I can't hear anything now, I have severe hearing loss, can't understand tv without reading subtitles and don't want people talking to me cos too embarrassing asking over and over again to repeat it and still have no clue. Tomorrow I go to get hearing aids fitted, another 5 grand! (I need to win the lotto soon). KDM was convinced it was involved and I have since found out hearing loss is a symptom of Lyme too. Even my aunt and uncle in their 50's/60's hearing loss is nothing like compared to mine, it has stayed relatively mild or at least slightly increasing loss according to age. This time last year I still had a good ear, now my so called good ear is worse than my bad ear!!
Well yes antibiotics. But it is important to be sure of the Lyme diagnosis, and to know the pros and cons (I hate to suggest abx to people now since they have not worked for me so far). I am trying to remember where I have read these stories, I think maybe in Cure Unknown by Hillary Johnson, or maybe on the Yahoo Lyme Europe board.Do you mean antibiotics by proper treatment or something else? Thank you, a nice bit of news, it is good to have hope, even if it doesn't work out.