BTW, "Jan" is pronounced like the English "yawn" (but shorter), and I think "Noosa" would be like the English "nose ah" (not "noose ah").
My first appointment with KDM
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Sushi
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I'm no expert on this this but it might measure the level of activity of the bacteria?
You can get it from a variety of insects or from your mother at birth.
Best wishes,
Sushi
I think it's a somewhat indirect measure, based on the current antigen response to the bacteria's proteins?
Hi, yeah I did ask him about them both and if they were involved, either a cause of it or caused by it (M.E). I did get feedback on it of course but not the whole picture just yet. It was a v short meeting, and mainly for him to get as much knowledge about me and my symptoms etc. He said both involved, caused by inflammation.
He corrected me when I said my migraines were menstrual related and said they were not but mentioned prostaglandins instead. I didn't question this further though,about what he meant by this as such. I should have and wish now I did, but a combo of early start, late to bed prev night and hardly sleeping anyway, and being wtecked from flight, brain fog, not being able to hear a damn thing from my stupid deaf ears and not being a morning person pre-illness anyway, I wasn't the best to take it all in and respond properly.
My mum asked him about the hearing issue, as I hadn't come across much regarding deafness and M.E, or at least a main symptom anyway. He said he could def be caused by the illness. Then she asked if whatever treatment i get helps make me better, if hearing would improve then. He said something like he is not sure or can't be certain at this point.
So at this stage I'm not much further on with them, but it is still early days in my dealings with KDM and when I go back next month, I am hoping to get a fuller picture of it and will ask again about the Migaine and hearing issues. I hope it will be easier to get these answers once tests results etc and he will understand better about me.
He corrected me when I said my migraines were menstrual related and said they were not but mentioned prostaglandins instead. I didn't question this further though,about what he meant by this as such. I should have and wish now I did, but a combo of early start, late to bed prev night and hardly sleeping anyway, and being wtecked from flight, brain fog, not being able to hear a damn thing from my stupid deaf ears and not being a morning person pre-illness anyway, I wasn't the best to take it all in and respond properly.
My mum asked him about the hearing issue, as I hadn't come across much regarding deafness and M.E, or at least a main symptom anyway. He said he could def be caused by the illness. Then she asked if whatever treatment i get helps make me better, if hearing would improve then. He said something like he is not sure or can't be certain at this point.
So at this stage I'm not much further on with them, but it is still early days in my dealings with KDM and when I go back next month, I am hoping to get a fuller picture of it and will ask again about the Migaine and hearing issues. I hope it will be easier to get these answers once tests results etc and he will understand better about me.
Sushi
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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!!
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!!
ahimsa
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It was very helpful, actually! I'm looking forward to reading more about prostaglandins.
I think I have some sort of problem in this area because of my previous issues with endometriosis pain. Pain relievers that inihbit prostaglandins were quite helpful. And changing my diet to try to reduce the "bad" prostaglandins (the ones that cause inflammation, can't remember the exact name) also helped.
Eventually, the endometriosis pain got too bad for me to manage with painkillers, supplements and diet changes. So, in 2000 I had surgery to remove abnormal endometrial tissue. This was not a hysterectomy but targeted excision of all abnormal tissue (or as much as could be found, my surgery lasted between 1.5 to 2 hours) by an endometriosis specialist. Fortunately, this surgery relieved most of my pain.
But it makes me wonder whether there is still some underlying problem with prostaglandins and inflammation that's still there. I still get migraines, for example, but not quite as often.
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@Sushi I would be delighted if KDM treatment could solve my migraines issue too. While there are not currently an issue for me, I do not wish to stay on Cerezette forever. I just could not deal with migraines on top of M.E issues too.
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.
I also have gut issues, quite bad too, but this is only since last summer, and not when I first got sick. I hope he can sort out this gut problem too. Food is a big enemy now. Pretty much reacting to everything . Hard one as you have to eat, avoid it!
But did you have migraines before you got sick, or as a result of gut issues with M.E?
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.
I also have gut issues, quite bad too, but this is only since last summer, and not when I first got sick. I hope he can sort out this gut problem too. Food is a big enemy now. Pretty much reacting to everything . Hard one as you have to eat, avoid it!
But did you have migraines before you got sick, or as a result of gut issues with M.E?
@Valentijn I am not a fan of antibiotics in general - over used /over prescribed. So I have not needed them or at least used them much. Last time I remember was about 10 years ago after a bicycle accident ripped skin off my face and it got badly infected. I have no idea what name of it is now though.
I suppose it was a few yrs later I first noticed some hearing issues, but it was so slight, and only in certain situations. I did not think of it too much, or do anything about it. It only got very severe and very rapid loss since I got sick so have been blaming that. Can't blame M.E for everything though I guess. Perhaps you are right, antibiotics could be involved.
@ahimsa I will definitely be questioning KDM more about prostaglandins on my next visit and get some more info on it. I have long been on strong painkillers for years, helped somewhat with period pains, but nothing ever touched or eased migraines in slightest. Not even those meds proclaimed to be migraine wonder drugs that supposed to always help. I might as well been swallowing air for all the good they ever did.
I am sure migraines/ hormones involved somehow. It probably sounds silly but when I first got sick and didn't know cause, I did wonder if I was starting a kinda early menopause. My hormones and periods were gone haywire and unpredictable and was getting hot sweats. I still sweat like a pig now, and really over powering hot sweats now and again (not as often as in beginning it was constant).
I suppose it was a few yrs later I first noticed some hearing issues, but it was so slight, and only in certain situations. I did not think of it too much, or do anything about it. It only got very severe and very rapid loss since I got sick so have been blaming that. Can't blame M.E for everything though I guess. Perhaps you are right, antibiotics could be involved.
@ahimsa I will definitely be questioning KDM more about prostaglandins on my next visit and get some more info on it. I have long been on strong painkillers for years, helped somewhat with period pains, but nothing ever touched or eased migraines in slightest. Not even those meds proclaimed to be migraine wonder drugs that supposed to always help. I might as well been swallowing air for all the good they ever did.
I am sure migraines/ hormones involved somehow. It probably sounds silly but when I first got sick and didn't know cause, I did wonder if I was starting a kinda early menopause. My hormones and periods were gone haywire and unpredictable and was getting hot sweats. I still sweat like a pig now, and really over powering hot sweats now and again (not as often as in beginning it was constant).
Sushi
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I had had migraines off and on since I was a teenager. But then I probably had gut problems all my life. Even though tests showed substantial problems in the gut, I did not have symptoms there.
Sushi
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May I ask how he tested for and treated gut infections? Also, did you do a exclusion diet to see what allergies were present?
SDSue
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RML, the course of your disease sounds so similar to mine. I, too, had hormonal upheaval, suspected early menopause, and had worsening migraines, each of which put me to bed for a longer period of time (up to a week) and worsened my overall stamina and well-being until l was bed bound. At that point, I both prayed for and feared imminent death.
I, too, tried all the migraine drugs which only worsened my headaches and gave me bizzare side effects (out of body feelings, slowed visual perception, etc) I seem to have settled into a permanent daily bad headache with some of those bizarre feelings. It's as if my brain is 2 steps behind the rest of the world in processing/responding to stimuli.
While I do think hormones played a huge role, I don't believe they were the underlying cause, rather a symptom of overarching inflammation in my brain. I'll be eager to hear what you discover about prostaglandins.
Sushi
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To test the gut, he did this test--DNA of about 67 bacteria (you give a stool sample): http://www.redlabs.be/red-labs/our-tests/dysbiosis-testing-msa.php
He didn't use the exclusion diet method but rather a food sensitivity test:
https://www.usbiotek.com/Content/Services/Antibody-assessment.html
The results of this test pretty much matched my experience with different foods.
He treated the gut with very powerful probiotics and prescription enzymes (matched to what the gut testing showed). He also treated gut infections with short courses of narrow spectrum antibiotics that only affect the gut. Xifaxin was the most helpful for me. After a few days on that, no more migraines.
Best,
Sushi
That would be amazing, I have very little hearing left, and lost in a silent world. Obviously, i can't get out much so tv or netflix are a main 'hobby' as such. I'm so tired of having to check if subtitles are available for each film before picking one. I feel I am using so much energy too just trying to listen carefully, concentrate and work out what a person is saying to me. Also embarrassing having them to repeat and repeat again what they said. It doesn't make for smooth conversation. Sometimes I wish the person would go away and not talk to me, which is not good cos I'm isolated enough.
I'm usually pretty strong, and try to focus on any positives and keep hope up, especially with this illness. But at home after that first audiogram showing it to be on border of severe, I broke down sobbing, saying why more crap I have enough with the M.E crap, that is enough for anyone, I don't need more.
wish I could start treatment right now and know if I even need these hearing aids. 5,000 is an amount of money I am not comfortable spending but I do need them, I have put it off too long already, I can't get by in life ( even my semi half life). They are ordered already anyway, maybe next week, hoping to have them before next appointment to make it easier.
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.
I'm usually pretty strong, and try to focus on any positives and keep hope up, especially with this illness. But at home after that first audiogram showing it to be on border of severe, I broke down sobbing, saying why more crap I have enough with the M.E crap, that is enough for anyone, I don't need more.
wish I could start treatment right now and know if I even need these hearing aids. 5,000 is an amount of money I am not comfortable spending but I do need them, I have put it off too long already, I can't get by in life ( even my semi half life). They are ordered already anyway, maybe next week, hoping to have them before next appointment to make it easier.
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.
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.