Hi,
Was wondering if there is anyone out there between ages 24-38 abouts dealing with a myalgic encephalomyelitis type syndrome, especially one that has seemingly fouled up the autonomic system? Just looking to connect with others trying to get through this in a more positive way-laughter is always a plus. The support groups for chronic fatigue and such always seem to be older women who complain a lot which only cause more depression. Also can’t relate to a man with the pressures of trying to find a job and friends/ reationships who can’t understand the confusing symptoms.
Would like to hear others and converse(not the shoe).
Brendan
Hi 
… Thou this community is quite new, only a couple of mths or so, so got a lot of growing to do yet. You aren’t the only male in this community . There is also Tom, he’s in his late teens.
Im no guy, (thou Ive got a beard right now cause of my wacked out hormones LOL). I just had my 36 yr old birthday a few days ago.
Ive had CFS for 10 yrs, my CFS is more of the ME variety, its up to about 80 different symptoms I get with this now. (I really need to update my symptom list which is on my profile in "my story" part). I think I almost have every symptom that one can get with this.. except paralysis. ***fingers crossed that I wont experience that one***. Im a walking medical book lol). New doctors I see, dont tend to see me again as they tell me my illness is too complex for them!
Im kind of into the health field too but more so natural health. I was at the end of my second year of college, studying Naturopathy when I first got CFS/ME (so unfortunately had to drop out). What kind of health professional were/are you? CFS is apparently more common in health professionals and teachers.
and I love to chat… so feel free to chat here to me or message me.
" Would like to find other professionals on ideas about cures as I have many"
I love to discuss things like this too… Im currently wondering about the methylation/methionine cycle involvement in all this… as Ive read about that and its CFS connection and know I have that problem cause I have MTHFR polymorphism. Im trying to correct this at the moment.
How long have you had CFS/ME for?
There is a place on the yahoo forums I know of where more professional like discussions on this take place, Cort Johnston (I think he’s a GP? who has CFS) and some other very knowledgables hang out there. (Cort does the “Phoenix Rising” CFS newsletters http://phoenix-cfs.org/Phoenix%20Rising%20subscribe.htm). It isnt a place thou for social chat and isnt a support group as such… its a place to discuss the CFS medical stuff and treatments. Let me know if you want that link. My brain is too screwed up with the CFS for me to be able to keep up there often.
Hi taniaaust1,
Thanks for the reply. Yeah, I’ve had mine for about 11 years. It started with a virus(epstein-barr), then quite a bit of stress, food poisoning and then other infections. Turned into more of an ME like yours probably. Stress hormones are uncontrolled sometimes. Gastric hypomotility is a major one as well. Also the frontal lobe headaches and temp.control problems and multiple food sensitivities, so I empathize.
I am a chiropractor by the way and prefer alternative medicine and other methods. I do a lot of research as you do apparently and after seeing a ton of useless doctors I had to hit the internet and use medical background as well. Remembered a treatment I read in 2003 about IPT (insulin potentiated therapy) if you don’t know about it. Thought maybe getting the infectionsby IV might clear things up. Found a doc. of Oncology that uses it for complex cases as well in Arizona. Probably the most brilliant doctor I’ve met yet. He also ran a battery of tests most negative except organic acids. He also mentioned the methylation theory and waiting on results. However, I believe now that the main problem is the brain-body connection as I was given just high doses of vitamin C with some other things added by IV drip as well. This caused me to slur my words and stumble walking. It seems that the condition affects all areas of the brain, especially the brain stem, limbic system and hypothalamus, adrenal, pituitary axis as well as other systems which is why it is hard to find a starting point. I do think there is a type of genetic flaw then an environmental trigger like the virus or trauma of some sort. Really, the only thing starting to work is heavy duty self therapy(mickel therapy). I have not seen the Phoenix Rising site but heard about it;will check it out.
I don’t know about you, but when I get tired quickly, it is from a shaky, nervous type of exhaustion although I don’t eat much. Plus, the worry about never having a life like you had leaves you in a constant fear state. For some reason, the area it hits is the hypothalamus. I also know the blood brain barrier is most thin surrounding the area. My doctor’s theory as well as for cancers is that there is also a clotting factor problem that prevents treatment or harbors stealth infections. Mine was high and that has dropped. However the hormonal thing does seem difficult to take on. However, I notice a big difference with things that have an effect on my adrenal glands as they seem always activated so my blood sugar is all over the place. I also think that your own cells can modify their shape by undetected toxins/infections so the body attacks them instead of the other.
Where do you live? I know that when the temperature is stable,so am I(a little). Seems that everyone has a different area of focus as well. I am on Hydergine(prescription) which increases blood flow to the brain and oddly enough, if I can just gradually increase physical activity, that seems to help too. I don’t think there is a magic bullet for this; right now anyway but all we can do right now is keep focus on something you love to do or a goal. I know you’ve heard that one but it does take a strong mind only that people like us know of.
Is there anything helping you/or physician? What other insights do you have? I’m working on all I can for answers too.
Best of luck,
Brendan72
My brain today isnt able to get thou that much… so I’ll reply to what I have been able to read and read the rest and reply to that tomorrow. (I’ve got a headache coming in from the concentration just from reading half your post, so have had to stop).
Can I also ask for a favour from you if it isnt a bother… if you dont mind could you break your posts when you post, into separated bits for me eg leave a gap between paragraphs.
That way I find it a bit easier going as I can take in a little bit at a time which doesnt do my head in so much.
“I am a chiropractor by the way and prefer alternative medicine and other methods”
great…we can have a lot of interesting discussions then about various CFS treatments , Ive tried heaps.
“I do a lot of research as you do apparently and after seeing a ton of useless doctors I had to hit the internet and use medical background as well.”
nods… yeah one gets the best of two worlds
"IPT (insulin potentiated therapy) "
Now that is a therapy I havent heard of before. I’ll now research that one myself when my head is filling better.
“He also mentioned the methylation theory and waiting on results.”
I’d really be interested in hearing what your results there turn out to be as I are wondering if all MEers have some kind of problem there or not.
My MTHFR polymorphism problem, the problem it causes in my body is correctable as long as Im on folate, methyl cobalamin, trimethyl glycine and pyridoxal 5 phosphate. (I need the methyl donors. Thou Ive studied bichemistry at collage, my brain has now gone to slush, so Im just going by what my CFS specialist is saying there about all that. He’s excellent with the biochemistry stuff).
So far thou I havent been able to afford getting all these new supplements, Im meant to be on, so cant say yet if being on all those and fixing the genetic problem, will correct my CFS. What I have thou got now, has certainly helped me at least some.
“I was given just high doses of vitamin C with some other things added by IV drip as well. This caused me to slur my words and stumble walking.”
Have I gotten confused or are you really saying that it was the vitamin C which made you slur words and stumble walking? You also said there was other things in the drip?.. I also wonder what preservatives were in that too.
I havent tried a vit C infusion… but I actually find vitamin C orally seems to help me a little, so I commonly take a dose of it in the mornings, (it stops the blocked nose feel I often get. I have a staphacocal species up my nose…so I also wonder if that is causing any trouble, I dont know if it is a toxin producing one or not).
"It seems that the condition affects all areas of the brain, especially the brain stem, limbic system and hypothalamus, adrenal, pituitary axis as well as other systems which is why it is hard to find a starting point. "
nods… yeah I definately agree with that.
“I do think there is a type of genetic flaw then an environmental trigger like the virus or trauma of some sort.”
nods… I think that too.
“Really, the only thing starting to work is heavy duty self therapy (mickel therapy).”
Hearing you say that, made me look into that a little more as I’d heard it mentioned before but really didnt know what it was. I think I, a tiny bit understand the principle of that on reading about it briefly… thou Im still quite confused about it. eg it said to try to relate ones symptoms to something each time one gets a symptom as its the body trying to tell one something. I personally believe in body symbolics so symptoms are ones body subconciously saying something and what I just read on the Mickel theory sounds a little like that. Is it a similar theory???
Some of mine symptoms are coming right out of the blue eg I have a new one which has kicked in the past few days, another strange one. Both times its came on while I was asleep, waking me during the night, lasting less than an hr and then goes again. It’s pain in two of my knuckles which flares out into my hand.
Strangely last year I had problems with a knuckle on my opposite hand for quite a while… but now havent had any more problems with that one. It also seems that if I injure a body part even a little, it is maintaining memory of that injury as I will get pain coming and going in that area randomly, well after that area would of healed. this has just given me an idea… I should try to clear cell memories and see if that helps. (I used to do a lot of energetic/energy work…so hence something like that thought just came to mind).
“I don’t know about you, but when I get tired quickly, it is from a shaky, nervous type of exhaustion”
nods… my tiredness too isnt of the kind that many CFSers talk about… with mine its more body shaky feel, im going to go into a fit kind of feel cause im tired, (and I actually then do tremor), rather than the cant lift a leg any more feel, (thou at times I find that I are dragging a leg, that was happening to me today some, thou I was not feeling exhausted at all). The body symptoms which come in for me are worst than the tiredness. When I first had this illness thou, for many years… it was the extreme body exhaustion state which was my top symptom rather than the neurologal ones.
I tend to go into tremors easily on too much exertion, the neuro symptoms and headaches etc from overdoing something, will stop me from doing something before actual exhaustion or tiredness stops me.
Ive been following up 3 CFSers who just completed a l4 week live in GET program sucessfully (enforced exercise and rest periods). Their success with that has really surprised me and has me asking why do I seem to be different to them, Im 98% postive a program like that would make me crash bad as increasing my exercise has done in the past and being so easy for me to go into “neuro overload” from overdoing.
On questioning one of them further I found out she dont seem to get neurosymptoms (no brain fog or shaking). It makes me think those ones may have something completely different to what I have, draws a distinction between just CFS and CFS/ME.
I really want to finish reading your post… so I’ll go and lay down for an hr and get some rest… then come back and finish mine if Im fine.
"My doctor's theory as well as for cancers is that there is also a clotting factor problem that prevents treatment or harbors stealth infections."
 I assume you have read the stuff on APS (antiphospholipid Syndrome) and CFS and protecting stealth infection, umm if Im remembering correctly it was something to do with fibrin. My CFS specialist had me have a coagulation studies test .. that showed my prothrombin time is just a little  bit quicker than the normal range. If I didnt have money issues, I'd get the Hemex blood tests done as Im really wondering what would show up there esp since I know my blood is clotting fast. Ive considered the CFS treatments in which blood thinners are used to help expose the stealth infections and then antivirals are used.
"my blood sugar is all over the place."
 I think mine is too.
"Where do you live? I know that when the temperature is stable,so am I(a little)."
 Im in Australia. Temp fluctuations dont bother me like Ive heard they do with many  but I usually cant handle hot or too cool days easily. ÂÂ
"Is there anything helping you/or physician? "
 - Homoeopathy has been a big help to me, it permanantly cured my constant thirst and used to get rid of dizziness (thou only for a few days), it had me feeling a bit weller etc
- reprogramming or strong suggestion.. hypnosis would work the same way.. helped me when it came to the sleep cycle problem I had with being more awake at night, and wanting to sleep in the day. I had insomina every night before another helped me and got rid of that problem for me.
- Chiropractor helped me with the PMT cramps, (CFS makes womans problems much worst!!) and helped greatly with the CFS dizziness. It turned out my neck was out and this give the CFS a bigger impact on me as far as the dizziness coming in on over exertion was concerned. I need to go and see chiro again some time..
- Supplements have helped me greatly.. calicum (1000mg daily) has gotten rid of my severe hormonal mood swings and severe period pain.  I also take magnesium (but Im not sure if that is helping.. I may actually be a little intollerant to it, which Im still trying to work out but the other day I didnt feel as good after taking it). I took undenatured whey for a while (most CFS specialists recommend one with CFS to take this), I turned out thou to be intollerant to whey as it makes me incontinent. Thou that whey actually was helping me, I was feeling a bit weller and I had more energy while on it.. so its a pity my digestive system cant handle taking it. I also was taking Vit D3 for my deficiency till recently, (thou I havent had a blood test yet to see if my levels of Vit D3 are okay now). There are other supplements Im meant to be on, but I havent been able to afford to go onto them yet, but will give those a go soon. If you havent tried it already, I really recommend you to try UNDENATURED whey.
-herbally.. I take Korean Ginseng each morning. I think this helps me too with my energy.. but only slightly. I used to take a pure concentrated form of this, (it looks like black gunk), and that seemed to help a little more than the capsule form Im taking now. I tried taking Gingko for my mind for 6 weeks..but that didnt seem to help, but then I probably should of tried it for a couple more months.
- massage used to help a little with pains (I dont often get bad pain any more so dont worry about this).
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- my spiritual healers and spiritual healing, helped me greatly as far as pain and getting rid of strange pains go.Hey Taniaaust1,
Glad you could get through the day/night. Sorry about not spacing my paragraphs out.
After reading my own response, it made me a little dizzy too. It does seem you have a very significant adrenal/hypothalamus thing going on. Especially with the facial growth and thirst respectively. I think the ventromedial nuclei have a role in thirst as well.
I agree with your theory on cell memory. Actually, I think it is THE key to the cycling of all this crap. I injured my thumb two months ago trying to lift a small weight and now swells up during certain periods. I also believe it is the reason why our immune system attacks our foods causing autoimmune type reactions and not allergic ones.
I've been trained in a treatment called JMT which their theory was the same-it is the protein on the infections(which can be tested for at times) that match the food proteins so it strikes on all nutrients. But negative cell memory was a main staple.
I've also realized even last night,(3hours sleep) and had to get up to shower and heat my body up, that even though I don't have much energy; the main cause is still OVERactivation of the neuro-immune-endocrine immune system.
By this theory, I combined nervous system calmers such as GABA sublingual combined with an easily digested immune booster(for me it's colostrum, dandelion root tea combined with sympachco tea-wisdomnaturalbrands.com & tastes good) At the same time, I used this contraption which seems to calm the shakes as well and promote mood stability. This is called alpha stim SCS found at www.alpha-stim.com.
This works by just wetting the tiny clips to your earlobes and submits a brain frequency that supposed to stabilize normal frequency. Maybe it'll help.
I just started calcium which I was low on, so good call on that one-Thanks.
I also tried a massage called Kurashova Re-education technique that also helps a little. Light, superficial massage followed by a sort of scratching up the legs and spine to reset the ANS. However, it might be hard to find a practitioner as it was learned in Russia.
I don't drink much of the Ginseng but I'll try it too. Thanks again.
Seems the only real effective if any for reducing cell memory is an energy technique or the Mickel thing mentioned before.
Everyone expresses different weaknesses as we know in different organs/systems and the frustrating thing is the link. We'll keep working!
All the best,
Brendan72
"I've also realized even last night,(3hours sleep) and had to get up to shower and heat my body up,"
 ohhhh.. I used to have to do that quite often. I would just for no reason go cold during the night and the only way I could warm myself again was by getting out of bed and into warm water. Something has shifted thou.. as now its more a heat thing Im having problems with.
"I've been trained in a treatment called JMT"
 That's something I hadnt heard of before.
"I used this contraption which seems to calm the shakes as well and promote mood stability. This is called alpha stim SCS found at www.alpha-stim.com.
This works by just wetting the tiny clips to your earlobes and submits a brain frequency that supposed to stabilize normal frequency. Maybe it'll help."
That sounds interesting... and would be something I would like to try.
"I just started calcium which I was low on"
 I forgot to say this before, but taking calicum regularly, can also sometimes lessen the spasms and jerking one gets. Ive had other CFSers who have tried it say that, but in my own case it hasnt helped in that way and just has helped the other things I mentioned previously.
" also tried a massage called Kurashova Re-education technique that also helps a little. Light, superficial massage followed by a sort of scratching up the legs and spine to reset the ANS. "
 umm interesting. My chiro used to do a lot of different things with energy and touch in certain ways... possibly something like that. He used to make me feel so good at times. Send energy rushing up to my head.. which used to make my brain feel energised some.
"Seems the only real effective if any for reducing cell memory is an energy technique or the Mickel thing mentioned before. "
 Ive been taught how to use certain clearing energies.  (I used to use the technique on clearing past life things). I just havent really tried to use the technique on any CFS symptoms, (as until your post the other day, I hadnt even thought about using it for the CFSy stuff).. I'll give it a go next time I think the symptom is definately just a cell memory problem eg my left ankle problem Im sure was/is.
"Everyone expresses different weaknesses as we know in different organs/systems and the frustrating thing is the link. "
nods.. I have several real weak areas
 Maybe you can explain to me something my chiro had/has me doing???? (he would never exactly explain anything to me, so i still dont know what the following was exactly working on). He had me having a icecream stick, sticking out of in my mouth, lined up between my front two teeth. It rebalances me in some way I was out. (but he never told me what was out).  I just went and put my stick in my mouth right now and instantly Im not feeling so tired, it actually just instantly fully wiped my tiredness out while I have it in my mouth,  it also enables me to be able to think clearer and I dont walk slouched when I have it in my mouth Do you know anything about this technique???? (If i leave it there too long, it creates an uncomfortable strong pulling feeling in my third eye due to trying to put something in balance).
 Maybe you shouldnt have told me you are a chiro LOL.. as now I also have another question I'd like to ask.. in regards to some of my medical reports I just gained under the freedom of info act on my MRI and EEG brain scans.  (only comment if you dont mind at all, I'd hate to be bothering someone).
  Some things seem to be abnormal, thou doctors ended up not worrying about any of it eg my report said that "the background record had Virtually no normal alpha activity".ÂÂ
  They concluded "The EEG is predominated by fast activity is a non specific sign and may be related to medication". I wasnt on any medication thou at the time. Have you heard of CFSers having a problem with no normal alpha state?????? It probably explains thou why I find myself completely unable to meditate while Ive got the CFS affecting my head, as during meditation its often alpha/theta happening. A lack of alpha would mean that my brain isnt getting to rest when I shut my eyes and relax.
 My initial report says "MRI brain done but not yet reported. Hx noted. Very unusual presentation not consistent with neurologic lesion or toxi ??" (i cant read it).  ÂÂ
  But in the final report it doesnt say at all anything unusual was found. I also dont know what Hx means????  Do you know at all? (I could only find it online meaning something to do with tumors?).
       ............
 I've read that with CFS various abnormalities can sometimes be found on scans which often just end up being dismissed.. but other than lesions, I dont really know what these are. Have you read of that or know where I could find that info again?. Have you had either of these scans? If so was anything unusual found?
........................Anyone else on this site, please comment if you know the answer to my question or if you’ve had any abnormal scans with the CFS yourself… i’d love to hear of it.
Thanks…
My brain has just started working…and it suddenly came to me that Hx means history… so ive got the MRI stuff or worked out. That was normal.
…
Taniaaust-
Just got the message, sorry, can only get to the computer at times as well. My digestive system is severly compromised as I have debating getting an implant in the upper stomach to move through, which is why dietary/supplements don’t work.
Today, had a medium sized raw drink from whole foods with three types of greens and blueberries but that sat in the stomach for eight hours even so a little tired.
Will only reply every other day or so as I am trying to get treated or falling asleep at very odd times and then I need rest too.
Yes Hx means history, no problem. As for what they found; they should let you know for sure if they are confused. I had many MRI/CT scans already.
The only thing that shows up on MRI for ME patients is areas of punctate demyelinization(as in MS) but this is rare as well;mine was normal too.
As for the alpha state deal, that is odd. You usually want low alpha states but if you’re going to straight theta, which is good for meditative or restorative sleep. It seems you’re missing the gradual rhythm leading into those frequencies.
Maybe the alpha-stim I mentioned before would help as it focuses on those brain waves. Plus the added effect if put very high up and close to the TMJ on the earlobes, seems to effect the Vagus nerve as well—which is big time in my problem.
Also, the more I read about the Mickel/Reverse Therapy, the more it makes sense in that you become AWARE of when and why symptoms come on and you answer those questions yourself and quite amazing results have happened.
However, all cases are different and ten years of dysfunction doesn’t leave overnight. The Kurashova seemed to start kicking in as well as I get very tired but not in an exhaustive way, more in a restorative way. Just don’t combine the alpha-atim with the Kurashova;it seems to confuse the system more.
As for the ice cream stick your doc. used has got me for a loop. I would have to see it or how he places it. My guess is it some kind of nerve access that apparantly is effective. Minus well go with it. Ask him as well, as it is your right to know what treatment you are getting.
I know you are worried, exhausted, stressed, whatever but don’t immerse yourself so much that all focus is on the constant negatives. For me, I’ve found just deep breathing and focusing on what your body symptoms are trying to tell you helps 50%. Let go of the rest–you’re doing your best and let some ideas pop up-you’d be surprised at times.
This process says it tends to reverse cell memory which is probably the major cause. Like you, my symptoms started as physical as well(martial arts, free weights 2hours a a day). But for some reason they all turn into a sympathetic/parasympathetic imbalance by negative cell memory.
Keep hope, but not to the point of your shakiness or what you can handle. I know we all are getting closer to the link of it all.
Best of health,
Brendan
nods.. yes deep breathing helps.
There is a CFS message board which could be of interest to you, which discusses experimental treatments.. a yahoo group called CFSFMExperiemental . They arent into Mickel Therapy (they dont like that discussed as many there dont believe in that) but they are into a lot of nutritional things and other stuff.
My system has been seeming a little stronger the past week, thou Ive been under and lot of stress cause my dad had to be hospitalised and I also caught a cold.. but the thing is I havent relapsed with all that like I would of done in the past. Im feeling more stable too. Maybe I really could be on the mend some. I just need to start being able to do more things without symptoms happening.
i hope things are going good for you
Brendan, I, too, have similiar health problems, but I do sort of feel turned off by your reference regarding older women who just complain. Perhaps living a little longer than you may have given us some insight as to how to deal with our problems, but I guess you wouldn't be interested in that. I do wonder about your compassion as a chiropractor.
Despite this, i wish you well; and will refrain from citing my problems here.
Debbie
Brendan wrote:
Also can't relate to a man with the pressures of trying to find a job
A woman with the pressures of trying to find a job can certainly relate. Not all of us have husbands supporting us. Mine had the notion that I got CFS just to inconvenience him; the more help I had to ask for, the more he complained that he "didn't get married to have to cook and clean". Mind you, I was working full-time and paying all the household bills from my paycheck, so it wasn't like I was contributing nothing to the family -- I just couldn't do everything by myself any more. So, he's gone and I'm glad.
After my complete collapse, the doctors and disability judges all gave me the brilliant suggestion to find a husband to support me. Didn't tell me where to find this paragon of virtue who earns enough to cover my medical bills and will still be willing to do everything for me without asking anything in return.
Since no one was willing to hire me, and the disability judge wasn't going to give me anything but advice to get married, I had to hire myself. Sat down with some friends and figured out what I was good at, what I could still do, and how to do that from home part-time.
There's currently a threat to alternative/complementary medical treatments -- see the article about herbals, etc., at http://journals.aol.com/kmc528/Lifeasweknowit/ and use the link in that article to share your thoughts with the FDA about how these are the only things that work for CFS -- Big Pharma has no interest in coming up with anything to help us. Ampligen helps, but is not approved for sale. Anti-depressants are proven useless.
"
After my complete collapse, the doctors and disability judges all gave me the brilliant suggestion to find a husband to support me. Didn’t tell me where to find this paragon of virtue who earns enough to cover my medical bills and will still be willing to do everything for me without asking anything in return."
now if you find what the judge asked you to, and he has a twin, please send the twin my way :p . That judge sounds like such a jerk.
Found another interesting site to visit for more info on Fibro, all kinds of health info and reports. Go to www.healthiertalk.com…Deb
That was always my fear before meeting my husband and having bouts with CFS. I have a desk job now so I am so thankful. I fear most of getting real upset because that is what flares it up. Like a death or something. I do good compared to what I have had. I had a doc put me on Acyclovair 400 mg 2 tabs daily for twenty days and off for 10. I don’t get the chronic throat infections like I did or the CFS spells like I did. But he believes in the CFS. He ran a Ebstien Barr blood test and it came back positive (twice) Have a great day!
taniaaust1 cfs-cpt1658@lists.careplace.com wrote:
Could you tell me how I was connected to this information forum. Thanks Katie
-----Original Message-----
From: cfs-cpt1658@lists.careplace.com
To: ptakatie@aol.com
Sent: Wed, 11 Apr 2007 9:31 AM
Subject: Re: [cfs] others with complex illness?
katie… you must of signed up for it and forgot. It says you joined up Dec 23 rd and in your profile that you were interested in treatment.