Author Topic: Keeping Death In Check (Read 68148 times)

J. Wilhelm · « **Reply #175 on:** February 18, 2016, 06:37:02 pm »

Rovingjack:

Speaking as someone who presented research papers in college every year, I can tell you that using the cutting edge to make hard judgements is fraught with danger. That's why we have peer reviews in science. Often over 50% of what is presented in conferences is wrong or incomplete, and I don’t suspect that biology and medicine are any different.

There are always enormous monetary interests, whether they are grants, contracts, or even donations, pushing the professors, graduate students, post-docs. The pressure to produce "next year's paper" is ridiculously high, and often scientists cut corners or jump to conclusions.
It happened to me.

I spent two years in research doing computer simulation on hypersonic flows past blunt nose projectiles. These were hypersonic "guided bullets" which the Army wanted to fit with cameras at the nose. Researchers at Purdue were repeating the experiments but in a wind tunnel, instead of a computer simulation. We all had a contract from the Army and Air Force, and we had tight deadlines to adhere to.

My professor would sign me up for presenting a paper in April, when we didn't have enough evidence to even write a paper in November. We pushed commercial code to the limit, even doing things like using some settings that the software engineers told us not to do. But because my professor was a big-wig PhD, he (luckily) knew how far to push the code and still get semi-decent results.

It was crazy. The grad students at Purdue, using a wind tunnel, "found" that the cavity at the nose "resonated like a flute" and through a mysterious oscillation theory they invented, actually cooled the nose of the projectile.

My computer simulations absolutely refuted the idea, and actually matched a data set from them, which they themselves claimed was bogus due to a "faulty pressure sensor," but mostly because it didn't match their oscillatory theory.

For two years they had everyone convinced, including the Army, Purdue, and my own supervisor, so I spent most of my time defending my case because I was a "newby" and "I was too new to know what I was doing." Naturally wind tunnel experiments are more reliable than computer simulations....

After funding ran out and I was out of the project (but still presenting the last of my paper) in one of the conferences, it came out that their data set had been swapped. The good data set was the non-oscillatory data, and the faulty pressure sensor was the one which was "ringing" so they acknowledged my data set had been right all along. I had already lost my chance at a PhD by then, because I got "burned out" during my first year in graduate school.

I wanted to kill them. I can't blame them for me not being able to pass the PhD qualifying examinations, but their faulty data heavily contributed to me spending long unnecessary hours in the lab reviewing data that was correct all along. The whole period lasted 3 years. And I misshed my chance to be a PhD.

The moral is that those papers you are reading are very recent research, and not necessarily established truth.

Someone may come later in a 2017 paper and say "whoopsie it turns out that folic acid and folinic acid can be metabolized just as well as 5-MTHF." And here you were left jumping through hoops for months because you took their research paper at face value. Naturally when disappointed you say "these people don;t know what they're talking about."

Rovingjack, they do know what they're talking about, but the path of knowledge is not a straightforward path. It's not like opening and closing a water faucet. More like trying to get clean water from a swamp.

The data sets you are looking are too recent and the science is in flux. No wonder practicing doctors don't know anything about it. You need to put yourself in contact with the researches or an expert in those matters just to be able to judge how reliable those findings are.

rovingjack · « **Reply #176 on:** February 18, 2016, 08:36:57 pm »

Hooray!

The referral my doctor gave to genetics woke me up this morning with a phonecall to tell me that they don't see people for this condition and that it's up to my primary who has no understanding of the condition to manage it.

I tried to ask about the compounding conditions and got the complete brush off.

This isn't hard-
I have screamingly high levels of homocysteine, only marginally low normal folate and b12, and my methylmalonic acid levels are normal. I've been having symptoms of muscle twitching, weakness and fatigue lasting weeks, and have been eating a diet high in natural folates, b6 and some sources of b12. In looking at b12 and folate supplementation I need to know:
I have MTHFR c677t, how does that effect risks and benefits of supplementation with cyanocobalamin, folic acid vs methyl varieties of these vitamins?
Do MAO A r297r variants effect these. I have that as well and it works with neurotransmitters and b12. Might this effect the response of MTRFR to different forms of B vitamins?
I also have variants of MTRR a66g and a664a, which again can effect some of the folate and b vitamin processes. Does it's effect alone or in concert with either of the two above effect the efficacy or safety of a given B vitamin supplement?

answers of yes, no, and we don't know at this time, or even no studies have been done to determine that as far as we know; are all acceptable answers.

:

what is not an acceptable answer is to ignore and interrupt my first question with statements about how you don't like people being able to get their genetic data without going through you, and then to state that there is a lot of misinformation out there ...

WHICH IS WHY I'M CONSULTING WITH YOU! I'm looking for answers. if you turn me back at the door, you leave me no other options to struggle and sift through the misinformation on my own and thus risk my health and perpetuateing those same misinformations you are so vexxed by.

I was unable to sleep after that, did a bit of research and called back to see if somebody else could simply answer the questions for me of whether MTHFR, MAO A, and MTRR varriants had any effect on Efficacy or safety of one or the other forms of supplementing B vitamins. I got a pretty straight "Sorry we can't help you."

I filed a complaint with the practice. Not having answers is one thing. Telling somebody you think they are wasting your time when they come in with health concerns and documented issues, and simply refusing to answer questions about how to manage and treat said issues, is a gross failure of your duty.

I've basically been left to try and figure out the risks and appropriate courses of therapy for a genetic condition on my own in an environment they know perfectly well is littered with bad information that is very difficult to seperate from the valid data.

So I've spent the rest for my afternoon looking through the National health institue database of published studies for bits and pieces of info about the topics.

Near as I can tell all types of supplements work, the folic acid and non-methyl b12 may process slower and leave unprocessed levels circulating in the blood, which may build up at high doeses and potentially cause sensativity or even toxicity if intake exceeds processing capability (whether processing ability is slowed or sped up by some of these genes I can't find out) and the synthetic versions can have drug interactions and might mask issues (folic acid can hide anemia from low b12) but food sources of them are less likely to do that (but what degree it is less is unstated).

How these pieces might work together I cannot figure out either.

Near as I can tell food sources of these are universally accepted as a viable means to 'supplement' to restore healthy levels or at least head in that direction. As we approach those levels I could explore those supplements and their effect individually and in concert with my particular cluster of genes. Based on that and continued monitoring of my homosysteine levels with my doctor we can likely manage this current problem.

My continued issues with prescription reactions will have to be addressed if I ever need serious medical intervention. As well as addressing the two forms of food sensativity that seem to be commonly happening; digestive upset and respiratory with circulator and possible cutaneous.

If we can get answers for some of that and manage the issues maybe this would be easier to do. But by the time I get even close to that I'll have spent a third of a year struggling through this nearly completely on my own, and lost much weight and become physically weaker because of it.

rovingjack · « **Reply #177 on:** February 20, 2016, 05:12:02 am »

I was doing pretty good lately. Tried some Cod (high b12), had some shrimp and beef (good levels for DRV of b12) and eating lentils and spinach and potato for most all of my other needs.

I didn't like the beef and I'm not sure it liked me. way too tough for false teeth chewing, and I don't care for the taste, but I had two meals worth. shrimp are getting a bit tiresome too but they work well enough. The fish I can only tolerate in small batches before I have issues, fortunately cod is so substantial in b12 that 4 oz is like 400+ % daily value.

I keep getting the tingling or numbing lip and tongue that comes and goes periodically. And today I was getting a sore and stiff neck, which I may have had last week when I was a bit more bed ridden and wouldn't notice it over much, but I did have a dull ache at the time. They come and go, and sometimes are most obvious if I go five or more hours between meals.

I decided to try poultry again today for the first time in 2 years. I cooked it the other day, and have been nervous about it since. But I figured it would go bad if I didn't use it soon.

In retrospect it's a pour time to look for food reactions, when you are a bit twitchy, have a tingling tongue and lip, are tired, cold and nervous. But as near as I can tell 6 hours later no obvious reactions specifically around the time I ate. So I've got the second half of that batch to try again tomorrow to see for sure. hopefully my other symptoms will fade enough to give a clear indication.

I also ordered a supplement from amazon that has b6, folate, and methylb12 (as well as a whole slew of other b vitamins and supporting compounds). Though the form of folate is in question. at this point the methyl b12 alone should be an important factor in that. I'll try a dose this weekend and hope it goes well and doesn't cause any reactions (I hear niacin at high doses can be uncomfortable but this may be okay levels). If all goes well I should be able to supplement at least every few days to every day and it should help normalize my symptoms and bring my homocysteine levels down.

prof. cecily if my posts have not been driving you off with my stress and upset, I have another link on so of the info about the genetic glitches I have besides the MTHFR one and how they may compound the issue a little. It's a long one and the pertinant info is more than half way down. I snagged a quote from it.

:

it still doesn't say I can't use folic acid and cyanob12 (or even methylb12) just that the usual treatment is injected hydroxyb12.

so I guess we will find out with supplements of methyl b12 and folate/folic acid if they can help, and then as time passes maybe a trial of more generic forms to see if there is a difference. though honestly if the stuff I got doesn't cause me problems I may just keep using that ($12 from amazon gets me 100 doses. I shouldn't need to take it daily for that long and only use it for booster doses occasionally) That may well be 6-12 months worth.

rovingjack · « **Reply #178 on:** February 20, 2016, 05:54:32 am »

Quote from: J. Wilhelm on February 18, 2016, 06:37:02 pm

Rovingjack:
...

The moral is that those papers you are reading are very recent research, and not necessarily established truth.

Someone may come later in a 2017 paper and say "whoopsie it turns out that folic acid and folinic acid can be metabolized just as well as 5-MTHF." And here you were left jumping through hoops for months because you took their research paper at face value. Naturally when disappointed you say "these people don;t know what they're talking about."

Rovingjack, they do know what they're talking about, but the path of knowledge is not a straightforward path. It's not like opening and closing a water faucet. More like trying to get clean water from a swamp.

The data sets you are looking are too recent and the science is in flux. No wonder practicing doctors don't know anything about it. You need to put yourself in contact with the researches or an expert in those matters just to be able to judge how reliable those findings are.

Don't I know it. No I think what's showing up here is a classic case of internet miscommunication. I genuinely don't blame my primary doctor for not knowing that folic acid supplements come in other forms. Or anything about my genes (though I did give them my genetic data 2 years ago). I also understand that he was trying to understand why my blood tests would show normal range but low side levels of b12 and folate, while methylmalonic acid is normal which one would expect in somebody with little to no issues at all, but I had very very high levels of homocysteine. It really doesn't make sense unless one tracks down data on what test results for some of my genes can do.

I just saw a chart in the above linked article today that says the MTR gene variant I have can allow for high homosysteine levels with normal b12 and folate and no cause anemia (which often presents with methylmalonic acid levels elevated). I don't expect my doctor to know or even know how to find that info. I DO get upset when the genetics people he refers me to refuse to even talk about which gene variants I have or what my health problems are and how to manage them.

I also don't blame anybody about not knowing what to advise with regard to vitamins and their risks if any. But I don't feel I should have to pretend to be happy to experiment with myself to find out if I can make myself sicker in the process.

In short I stress in post form (not in person... usually, though I thought I was being curt with the geneticist, my housemate said I sounded like I was makeing a good case reasonably with somebody who was being obstructive or at least disintrested. and he would not have been anywhere near as patient. and he's usually rather passive. - he overheard my phone call). I'm in the midst of an illness that is leaving me in a physical state that doesn't allow me to do much (my fine motor skills are shot, too long trying to do fine detail work and I start with tremors or missing my mark like a person whose not slept in two days), leaves me tired, effects my concentration and disrupts my thinking. While giving me depression and panic attacks... even before giving me symptoms of things like a stroke (tongue and lip falling asleep and waking up for no good reason, possible symptom of b12 deficiency), or heart attack (sharp twinges in chest and tightness... but usually benefits from food or water) to add to the panic.

Dealing with all that is stressful. Dealing with it with no real support network, either personal or medical... I'm surprised I've not snapped and destroyed everything breakable before collapsing in a weeping heap on the floor.

my whole life is on hold, and this is my all day everyday for about the last month. even moments when I think I can distract myself get interrupted by a limb cramp or suddenly oral tingling or even a limb falling asleep while sitting on the couch.

I even started looking into cryonics again along with ideas like a living will ect. because a month into stuff like this one realizes one really should have a plan, even if it's not this time that gets you.

I've actually enjoyed the cryonics research again. it's fascinating from a possibility standpoint, quirky from a general world view perspective and inspires plenty of story ideas.

rovingjack · « **Reply #179 on:** February 26, 2016, 04:41:51 am »

Today, I have eaten. I have napped. I have eaten again. I ran to the grocers to get gingerale for the housemate who has a stomach virus that has him on the 'throne' with a waste pale in his lap instead of at work. my right eye is blurry, and my right cheek, lips and tongue go numb for periods of time. the sense of touch in my right hand is annoyingly 'off' in some indescribable way. I cannot stand to have my dentures in as my tongue tells me they taste like the rubber of tires, so I wear them only when I must chew.

I'm not hungry anymore, really at anytime, but my body gets achy and tingly across the skin like a fever when meal time approaches.

I will eat again and sleep again. I will do this again tomorrow. time will pass. some days may provide more sickness than others, some more cheer. but each tomorrow cannot be expected to continue the trend of the day before. I will eat, I will sleep and time will pass.

rovingjack · « **Reply #180 on:** March 04, 2016, 05:29:01 am »

The methyl b12 and quatrefolic (as well as a whole host of other bvitamins and support) supplement I ordered, makes a difference. It's not expensive and can be ordered from amazon. I took the first dose feb 21st. I didn't take any the next day, deciding to see how long it stayed in the system (b vitamins have a handy bright yellow indicator that shows up a while after one drinks their water). It's likely a bit over 36 hours in this case. But I felt the difference 30 hours later after it's effects began to fade. Mostly noticable as mood alteration and gradual onset of physical symptoms came later.

Since then daily dosing with the vitamin has done away with most all physical symptoms, though sleep issues and fatigue persist. But I hurried out to an appointment yesterday, forgetting the dose for that morning. By about 28 hours since the last dose I was deeply depressed and anxious, and physical energy was almost non-existant. and I just generally ached and felt feverish. Took a supplement when I got back home... and nearly crawling up the steps. It took an hour to kick in and a couple hours to really feel like I recouped from the situation.

I'm not sure that's good. It might just be that I need time on this for the effects to build up things that were depleted. But I worry that I'm that bad without the supplement.

Meanwhile I managed to get to the dentist to see about fixing my dentures which are in very bad shape. They did a quick look, and told me I'd have to come in for a consult with a specialist in 3 weeks. meanwhile I'm not wearing them most of the time. Mainly just for chewing at mealtime, then right back out. They pinch and taste horrible and the lining is near destroyed with plaque and worn through spots; there is also a crack, which is why they wouldn't reline it today and want me to see the specialist.

I also got ahold of the allergist for seeing about a food trial and additional testing... they scheduled for the end of april.

I've got an appointment with my PCPs assistant on monday and have to talk with the GI specialist tomorrow to maybe schedule something there, though I'm not sure what they could do for this.

The referral with the nutritionist was canceled by phone a bit over an hour before I was to go in. They basically said they treat conditions that respond to dietary changes, they can't help with nonspecific food based reactions with no established diet to manage symptoms. And on top of that my insurance would not cover the visit. I could come in and pay a months rent to sit with somebody who has no useful advice or means of helping me. Sooo that didn't happen.

I did try both ham and carrots this week. Carrots quickly became an unpleasant experience for a few hours, even though I'm not meant to be allergic to them, I felt like I'd been scrubbed with steel wool by two hours later.

Ham sort of left me in the same way, but it took 24 hours to reach that point and took another 12 to fully recover.

They are not typical responses to a food allergy so we have to try and figure out what is up with that, and if it relates to the homocysteine levels and b vitamin issues and will resolve when those are settled or if those are now no longer safe foods.

could be better could be worse.

Now if I can just get a decent nights sleep, and work toward getting my energy levels back I could at least feel like I could do something other then managing being sick all day.

rovingjack · « **Reply #181 on:** March 19, 2016, 02:18:59 am »

I'm not posting as much because I'm not sure anybody is paying attention anymore, but for the sake of at least having a record:

Since the 21st I've been taking the B complex vitamin, and the most recent blood tests come back saying that my homocysteine has been cut pretty much in half. Down from a "moderately high" 35 to an "elevated" 16.7

However my B12 and Folate levels don't seem to have improved at all they are still 300 and 7 respectively. which leaves them on bottom of the normal reference range.

It's a bit reassuring to see the Homocysteine levels come down.

I've still got the anemia and what my doc notes in records as Macrocytosis.

blood pressure is chronically low for the last few months, and my BUN and Alk Phos levels suggest either kidney and liver disrusption (both having fallen under reference range) or not getting enough protein in my diet (well yeah I seem to be having reactions to most forms of meats). and I'm still having issues with occasional muscle twitching.

However the recent batch of tests I asked for show that my Cortisol levels are near double (19.6) the preveiously established baselines we have. Still not off the top of the refrence range chart but just barely inside the bounds. That may be in part due to the stress on my body from this series of health problems but I can't rule out the possible connection with my other endocrine issues that have been around since a couple years ago that they stopped looking into (they checked for brain tumors and reproductive tumors but skipped all the stuff in the middle that could do the same things, saying that my cortisol would be elevated in those types of tumors).

No certainty yet on whether or not I'm having immune reactions to my dentures, irritation from fit, the liner needing redoing, or just oral mucosa sensativity due to the other illnesses going on, but I'm getting better at speaking without them and wear them only while eating.

I continue to have issues with foods that were okay to eat a couple months ago. Despite Rast testing saying I should be okay to eat them. The ones that make me achey and feverish or make my skin feel burned are unpleasant.

Sir Henry · « **Reply #182 on:** March 19, 2016, 08:26:55 am »

Quote from: rovingjack on March 19, 2016, 02:18:59 am

I'm not posting as much because I'm not sure anybody is paying attention anymore,

Hopefully the others are like me, still paying attention and hoping that you find a solution (or at the very least what exactly the problem is) but it has become rather more technical than I can comment on. This is an area that I know little or nothing about so don't feel that wading in and parading my ignorance would do any good.
All I can really say is stay strong and keep fighting the good fight. Oh, and "Chin up, old chap!"

Banfili · « **Reply #183 on:** March 19, 2016, 01:47:26 pm »

Still paying attention, but as Sir Henry has said, not enough knowledge to comment sensibly, but reiterating the 'stay strong and keep fighting ...:

Prof. Cecily · « **Reply #184 on:** March 19, 2016, 10:04:27 pm »

Good evening, ladies and gentlemen.
I'll have to chime in with Sir Henry and Banfili.
Hoping for the best, I think of you everyday and only wish my magic wand was in working order!

A big hug from
Prof. Cecily

rovingjack · « **Reply #185 on:** March 29, 2016, 06:06:03 am »

dentures repaired. I still don't wear them for terribly long, just out of precaution. once things get better sorted out I may test the gradual increase of wear to see if that changes anything.

I still have to blow my nose after eating most times, and get a slightly juicy cough on occasion too.

I sort of had a 'to heck with it day'. I'd been planning some taste tests for things on my youtube channel that I knew were likely to make me digestively upset before all this. I'd stocked up and the expiry date was coming along on a few of them. I seem to have hit or miss health days anyway, so I figured take a day and eat junk for the camera.

I tried: Pumpkin spice golden oreos, cinnamon bun flavored golden oreos, birthday cake flavored golden oreos, Red velvet cake oreos, cream filled chocolate cupcake oreos, Peppermint oreos, Plain mint oreos, Lemon flavored oreos, and reeses peanutbutter chocoalte cream oreos.

I then had to stop for about 3 hours and lay down for fear of vomiting. all but 3 of them I only had half of them, so I had about 6 total oreos. The thought on my mind half way through was how mind boggling it is that some people tastes can allow them that level of sickeningly sweet without destroying themselves.

Given a bit of recovery time I went into some Goldfish brand graham crackers flavors: strawberry shortcake, fudge brownie, vanilla cupcake, honey graham, cinnamon graham, and s'more. These were a much more tolerable level of snack. I think they even had enough substance that they cut some of the sweet in my system.

I finished off but eating some lentils and beef to really anchor things a bit better. Later I broke out some tortilla chips that were lime flavored (an old favorite that I've apparently grown out of in the intervening years of not being able to eat them).

Two days later I only was a little bit unwell digestively, not even really sick. Sigh, figures. Nutritionally worthless, sure have gobs of it; need it to not be malnourished, lets make it set your skin on fire, your muscles and joints ache, or maybe your digestive system will think you have food poisoning.

Had a referral from the pcp to a neurologist. they called me at the dentist and asked if I would rather some time in late June, or the next morning at 8am. Um, jee, let me think... so I stayed up all night to make an 8 am appointment. She ran some blood tests for things like Lupus, Sarcoidosis, MS, Lyme Disease, zinc deficiency and a few I've never heard of before (the results 'should' be in by the weeks end). did some checking of balance, muscle strength and reflex ect. She initially felt that was good enough but over the next day set in a referral for an MRI for me. I'll need to get that set up in the next few days.

But pretty much since then I had some really great days with no symptoms and a sense I might be getting better. Then last night I went to cook up the last of the ground beef I've been eating at every meal for about a week and a half. and there were little green bits in it. whoever ground it didn't clean out the machine between uses. with me reacting to everything I couldn't chance it, but every store in the state was closed at that point. I resorted to some of the shrimp I had in the freezer.

Woke up before I should have this morning. feeling jittery, and depressed... and for the first time in almost a week my tongue and lip feeling tingly numb for the first several hours of the day. It was a rainy cold and grey day, which can be kind of beautiful sometimes but my mood wasn't having any of that. I went to the store and exchanged the meat, and was feelings tired and achey from that short trip. But weirder still it felt like I'd been walking on concrete floor for 12 hours by the time I got back (It was less than twenty minutes.

My mind and anxiety started suggesting the lip and tongue may be mini-strokes from clots in my legs drifting free. I told myself to kindly shut up

. Homocystiene can cause increased atherosclerosis and risk of stroke and embolisyms ect, but I've been having the lip/tongue issue since before the neurologist and she saw no signs of impaired function, and I will be getting an MRI, so we will get the answers on that score when that time comes. No point in freaking out about maybe possibilities. Just, you know, watch for the symptoms of a full blown stroke or leg clot.

But it's not helping my mood much today, and setbacks tend to taint joys when we are symptom free.

If all goes well I'm giving the rest of the oreos away to some friends tomorrow, head up to visit family on the weekend and I may go see a movie with another friend in a week. I can't just sit here waiting for test results and appointments.

But that's just my cruddy mood today. Yesterday I was constructing elaborate art project plans and story plots for novels I planned to write. Hopefully with the beef back in the diet I can get myself back into a good place to do some things that I enjoy while we wait for test results and schedule an MRI (then wait on those results).

rovingjack · « **Reply #186 on:** March 30, 2016, 04:36:08 am »

I was woken up early by a phone call to set up the MRI, and answer a quick survey of things they would need to know beforehand. My appointment is on the 14th of april. I nodded off for a bit more before forcing myself out of bed because a friend was coming by to pick up some of the masses of oreos I have left for her family.

Friend didn't show for the oreo pick up.

Went to get to my counciling appointment and my phone rang while I was driving and hung up before I could pull over and get the phone out. Got back on the road only the street was closed and the cop standing there ignoring me when I tried to roll down the window and ask him how far the detour was since I just had to get a block up. So, since he was going to ignore me I cut through the barrier and went anyway. $:-\$

parked and dialed the call back. it was the neurologist office... 'your call is important to us, all of are call center personel are working with other customers at this time'... I waited and waited and waited. finally got through and said I'd recieved a call. They went to get somebody, and I waited and waited and waited. and finally somebody came on and told me the results of some of the tests.

My zinc levels are fine.
My lyme IgG and IgM antibody check came back with no signs of Lyme.
My ACE test was not elevated which means unlikely to have some liver or lung issues, lower probability of sarcoidosis, no real risk of Gaucher disease, and suggests thyroid should be working okay and diabetes indicators are negative.
My SS-A /Ro test suggests about a 70% that I don't have Lupus, rheumatoid arthritis, Sjogren’s syndrome, or scleroderma and polymyositis.
My SS-B /La test backs up the possibility of eliminating Lupus, and sjorgrens.

Now those last 4 are not absolutes, they run about a 40-60% diagnosis rate. But it looks like good odds when put together with other data in my health records.

so for now the info stands at:

:

Sir Henry · « **Reply #187 on:** March 30, 2016, 06:57:18 am »

Sort of good news there in that you probably don't have some of the more horrendous problems like sarcoid. Hopefully the MRI will show something positive/definite that you can start to work on.

Stay strong.

rovingjack · « **Reply #188 on:** March 31, 2016, 12:19:33 am »

Thanks.

I was a little worried about the Lyme. I've tested negative a few years ago on another test, but they say some tests can miss it about 1/3 of the time. And I don't do well with antibiotics as it is already, and most people who don't have trouble with antibiotics struggle with the treatment for this. My mind still worries a bit about the 'mostly sure' I don't have it; even if I know two tests years apart, in a case that would have to be systemic by then, both say I'm likely not infected, that's about as good a golden seal as you can get with this disease.

I have to remind myself we are eliminating causes, and we should be happy with some of those causes being eliminated... Learning what isn't making me sick though is hard progress to be enthusiastic about. But I will take it; if it means down the line we learn it's something simple to handle and maybe even easy to fix with the right information.

The glacial pace of the doctors in this isn't helping me any. Literally all the tests I've done so far could have been scheduled within 3 weeks of my first going in during January. By the end of February we could have checked everything else besides and had answers.

But anyway. Todays update says: ouchies. Maybe I'm not getting enough fats, or not enough water, or the shrimp incident from a few days ago, or overeating last night... or who knows. I woke with gut shredding agony this morning, but my body pretty much refused to get sick. It took three hours before it resolved, and I've been sore an in pain since. standing up makes my guts hurt, so the days mostly been a write off this far.

I do have to eat again soon though. I can't wait to see how that goes. hopefully it's resolved whatever it's problem was and we can get on with trying to have some semblence of life while waiting to find out what's going on with my health.

rovingjack · « **Reply #189 on:** April 16, 2016, 04:10:20 am »

Good news: A new MRI shows no permenant or ongoing damage to brain tissues. Which is a hell of a relief after health issues cause uncontrolled muscle twitching and pain for weeks (with lingering effects months out). And it takes a great heaping handful of potential causes that scare the crap out of me off the table. That was one of the happiest phonecalls I've had in a while. I'm writing a glowing letter to that Doctors department head. Not only meticulous and thorough in checking and working with the patient, but I had the MRI yesterday and got the answers less than 24 hours later.

bad news: apparently my body hit it's limit of spinach, cuz now a couple of tablespoons of frozen crushed spinach causes arthritis like aches all over for days after. And I think I'm rapidly approaching the gout threshold for the lentils and meat.

I'll try switching from the potatoes (a nightshade, which I know tomatoes have been an issue for me in past with joint pain) to sweet potatoes (different group and also a decent sources of vitamin A which is missing without spinach or it's relatives). I'll see if I can figure out some aditional options instead of lentils. I can always trim back on meat, possibly trying cheeses or eggs to fill the protein void with nutritional options.

I get about a week and a half off, and then I have to go deliberately eat something that will make me hurt for the day, in front of doctors and see if we can get any answers there.

Hopefully before then we will get answers on another test that should tell us about risks of pancriatic cancer. Not sure when the next blood test is set for but I antsy to see if Homocysteine is better and maybe the folate and b12 are better than they were.

rovingjack · « **Reply #190 on:** April 20, 2016, 06:36:59 am »

I stand slightly corrected. The actual document from the MRI, which came through today, says: Tiny nonspecific FLAIR hyperintensity in the posterior left temporal lobe.

They don't seem overly concerned, and as near as I can tell things like depression can induce some of changes like that, and in the abscence of specific symptoms related to the region or signs of progression to a greater degree I'm choosing to not be overly concerned either.

Possible causes for this include an artifact of the MRI itself, but even if it is something it my head it's not usually of great concern until it's less tiny and a bit more specific. They include things like ischemic episodes (mini strokes, or heart disruptions) but considering my blood pressure is chronically low and my heart checks out healthy...
It's also possible, something like advanced neurological lyme can cause it. But we've tested for that and for it to cause neurological symptoms would require it to be systemic and be around long enough that the blood test should have found it easily.
head injury. not that I'm aware of.
Diabetes, I keep coming back, non-diabetic on blood tests.
a fair number of people develop them naturally starting around 60 to 80 years of age. I suppose I think like an oldtimer,

I'll ask the doc what connection it may have to my elevated homocysteine and interrupted dopomine levels, as well as panic attacks and depression, and then see if we should keep an eye on it in the future.

meanwhile the check on pancreatic function, (looking for pancretitis or pancreatic cancer signatures in the chemestry. this test is taking forever to come through though. A food challenge for allergy department is in a bit over a week, and i need to schedule another digestive tract test for soon.

rovingjack · « **Reply #191 on:** April 28, 2016, 10:13:12 pm »

I'm not super excited. I got too little sleep all last week and finally got a good nights sleep which had me wake up at 4pm the day before a 8am allergy test. I got 2 hours sleep last night and then went to a place where they feed me something that makes me sick and watch me react before saying it doesn't make sense for an allergy and send me home.

Carrots: started with a small half slice cooked. no real reaction. ten minutes later two slices, went down painfully as if they were way too dry and irritating. ten minutes later and I sound congested and am clearing my throat. four slices of carrot, going down easier with water less throat clearing and congestion. ten minutes later feels like indigestion. more carrots. other than indigestion and feeling a bit flushed I'm doing alright. we wait and then do half a cup of carrots without any obvious changes.

We discuss things, and I agree it's possible that there is a GI aspect to this. The cough, throat and nose aspect of it could be a reflux of hiatal hernia (which I have been told my endoscopy showed I have risk for small ones) reaction, but why does it not present with things like potatoes and beef? They say there are no signs of an allergy and I head home mostly symptom free.

an hour later I get the shivers and my face stings like a slight sunburn. I call them to let the know. No change in opinion. 2 and a half hours later I started to shiver for about an hour and my face just hurts. I can't decide if I want to scratch it off or if it feels like I already did. I don't think I've been scratching my face but it feels raw.

Now, no obvious swelling, no difficulty breathing, no congestion. My face just hurts. It's starting to ease off now and mainly just feels slightly feverish. Though I don't think I'm running a temperature, and my blood pressure is actually up a little (about 10 sys and 8 dia) from when they tested earlier (it stayed the same from before exposure and during exposure).

I'm kinda new on the allergy front but this both does and doesn't seem like an allergy. The blood tests come back negative for IgE reaction, no hives or swelling, symptoms do occur for specific foods, but come and go even with continued exposure, and they are not entirely right for allergy symptoms (blood pressure isn't dropping, no visible mouth irritation, no nasal or breathing difficulty in pollen areas, in fact for the 2 hours I was there the symptoms were so minor and actually seemed to resolve even as I took more carrots, that I just felt kind of silly and like I was wasting all our time.) But at the same time it's clearly the same congestion and chest discomfort and facial discomfort each time for this food item and not from others, it comes on within 30-40 minutes of eating it, and doesn't happen on days I don't eat that food.

Sigh I'm starting to think it's possible that I'm either crazy, or that I have a mast cell disorder. Neither is a terribly good option.

I need to go get a blood test done, checking for inflammation. and tuesday I have another early morning at another hospital to check my GI tract rate of passage.

Prof. Cecily · « **Reply #192 on:** May 04, 2016, 07:46:16 am »

Good morning, ladies and gentlemen.
Be of good cheer- you've had your dental problems sorted, Spring is here and know you're not allergic to carrots.
Carrots have a high sugar content- how are you on the diabetes front?

I remain yours,
Prof. Cecily

rovingjack · « **Reply #193 on:** May 05, 2016, 12:17:37 am »

I've been much more emotionally secure of late, and I'd say that's in large part due to the lower homocysteine levels and b12 supplements for the last or so. That and I'm sleeping more and having fewer panic attacks, which also may be results from the B vitamins and lower homocysteine.

I'm not "allergic" to carrots, but I still cannot eat them. They make my face hurt. Likewise I cannot eat poultry or ham because them make my skin feel hot and my muscles ache. So I'm still stuck eating only potatoes lentils and beef, and they are risk factors for gout which I have. That and the worry about not having any other options if I have difficulties like in the past with these. I'm still not certain I'm not having issues with my dentures, I only wear them now when eating or making videos.

But in the mean time we are getting a bit more data with each pass through the system.

Actual tests of my inflammatory markers in two seperate tests the same day that I reacted to carrots, but not allergic reaction, say I have low end of standard range for inflammation. So despite the discomfort I experience it's not causing inflammation, and likewise it means I'm probably not experiencing longterm inflammation from my digestive system. It also suggests no likely ongoing infection of anything unusual.

It will be a little bit of time before I get results back from gastric emptying, and the test for that involved eating radioactive eggs. Eggs are one of those things that made me violently ill for weeks after eating one a few years back. But aside from some cramps yesterday I haven't been sick like I would have expected. So it's possible I may be able to add eggs to my diet.

The results for that test might give us some things worth looking at. Then again it may just continue to be mysterious and return results that suggest normal system results.

I've regularly had my fasting blood glucose tested with blood draws, have a home meter I occasionally use to check how my system handles things, and had HA1C testing done back in January. They blood glucose is always under 100, the home meter is always under 95 when fasting and under 120 two hours after eating, and my A1C is 5.0% (estimating a three month average of 97mg/dl). It's all up a bit from my usual, but given stress and a diet consisting of mostly potatoes/rice for all that time, while mostly too sick to get much exercise...

We've also done an elastase test which says no pancreatitus or pancreatic cancer, which is reassuring.

I know I've also had a few episodes of blood sugar below 70 in the last 4 months. One after a reaction to the antibiotic and one in a week where I was literally starving.

I do know that if I go too long without food I have a particular problem. It was for a few years that my thighs and lower back would feel pain like I'd been hit with a bat until I ate something, taking half an hour to ease. and if it wasn't something that provided energy for long enough it would come back in a couple hours, high energy foods could make it go away completely. No since the antibiotic reaction it's less ache in the legs, and more a general ache everywhere, but also results in my tongue feeling like it is going numb on the tip and side.

Like I said I've been sleeping better when I don't have appointments to wake up for, and last night I slept for 10 hours after being awake for 20. I woke with my tongue hurting, feeling bigger and with two very sore cracks in it. Is it dryness, is it the logical extension of the tongue problem from not eating anything in more than six hours taken hours further, is it leftover sensativity on the mucosal surfaces after the antibiotic that becomes more apparent when not soothed with water or food, is it because I wore my dentures for longer periods of time yesterday while making videos (so I can speak clearly) and I'm reacting to the material in them, was it the eggs yesterday?

So while we sort things out, the good news is that many if not most systems seem to be working quite well. We still don't have answers to my food problems though, neither the standard inability to tolerate most food without getting sick, or the sudden skin muscle and oral reactions to some of the foods that have been safe for me for years.

If I can get the homocysteine levels in a normal range, raise the b12 and folate, drop the cortisol, and try and find a few other food options I can use, I can maybe get some semblence of functional in the outside world again. I still insist that we keep looking until we have more answers as to what is going on though.

rovingjack · « **Reply #194 on:** May 05, 2016, 09:09:13 pm »

after posting the reply above I did a 4 hour post meal blood sugar test (I've been out of corn chips for between meals like I've been doing since I cut honey from my diet 2 years ago, and this is where 6 hours between meals leaves me achey), and it came back as 75. And again this morning on waking up after 9 hours since I last ate, 78.

rovingjack · « **Reply #195 on:** May 12, 2016, 08:49:02 am »

I have gained some of the weight back via corn chips. It's like the worlds blandest nachos, but Lentils and ground beef as a dip for corn chips with nothing else added are decently snackable and I can pack away enough to help me get my weight up again.

Also I just completely shut down a building panic attack with reason and information.

The fear of progressing undiagnosed lyme disease went up in pink glittery smoke when I realized that completely inadvertently several tests for other things by other doctors overlapped enough data to show it would be near impossible for me to have it.

Basically My High sensativity CRP, Sed Rate, no elevation in white blood cells, low normal eosinophils, low normal neutropils, low normal Basophils, low normal monocytes and low normal lymphocytes, SS-a normal result, SS-b normal result, ACE normal result.

This is all stuff meant to detect other things, but people with Lyme disease would get at least slightly elevated levels of half of these if not outright signs of red flags on them.

So now I can kindly tell my chemically disrupted brains panic centers to kindly shut up about lyme disease. And even better when so silly twit offers that maybe I have Lyme that is causing my ill health, I can clearly state that no I do not. Instead of doubting and worrying and panicing when it's mentioned.

This makes me insanely happy.

Prof. Cecily · « **Reply #196 on:** May 20, 2016, 08:24:18 am »

Good morning, ladies and gentlemen.
Such good news about Lyme's.
And so much envy!
I adore nachos/cornchips, especially with chopped jalapeño peppers as a dip.
Alas, my digestive system will not abide corn in any quantity!

I remain yours,
Prof. Cecily

rovingjack · « **Reply #197 on:** June 15, 2016, 09:50:52 pm »

I've been doing fairly well lately, but figured I'd still update here rather than clutter other topics with my problems. Because it's clear for me that doing well for me is still enough of a constant struggle that it it would be obnoxious to keep interrupting other threads for.

I've had a couple good weeks where I could pretend I was a normal functional person, but that involves a certain level of ignoring the fact that I've eating nearly nothing but lentils and beef with popped corn or corn chips. I know it's not long term sustainable, but I don't know what else I can do, and neither does anybody else. So I just try to forget about that fact to get through my days. And it works more often than not.

I've tapered off on the B multi vitamin now that my levels have become more normal range. I take one about every other day, sometimes I forget and miss a day and don't worry to much about it. Eventually I would probably be okay to go once or twice a week to maintain levels ... that's dependent on future blood tests that will tell how my body does at taking it in and keeping it's levels steady.

I've noticed a few arthritic/gouty foot warning signs lately, I ward off by cutting back on the amount of food and drinking more water, and it has me worried a bit. Legumes (lentils and beans), nightshades (potato), meats (beef) and carbs (corn and potato) are all things with suggested links to gout flairs. So this may be something I have to confront soon. I'm trying to work with Gastro and allergists to figure out what my options are and what to do going forward. They're mostly finished with all their usual processes and don't know what to do with me and sort of left me on my own.

My recent General Practitioner visit came down to no ideas, but he listened to my breathing and said there was a crackle in my lung and decided to do a chest x-ray. At the same time he seemed worried that I had abdominal tenderness and when asking about it I told him that I'm used to it happening. I've dealt with it occasionally every two months or so happening. I'm used to it. I've also mentioned it before but nobody gave two thoughts to it. But this time he wanted an abdominal CT.

They were amazingly fast about it. the next day I got both scans done, and a week later results were in and I had a follow up with my doc. everything looks as it should for the most part. I've some signs of small insignificant and normal gallstones (near as I can tell most people have them, they are not considered a significant presentation or anything worth watching), and L5 -s1 signs of early degeneration (aka early signs of arthritis in lower back). My liver, pancreas, and my lungs looked healthy and without noticable issue.

My radioactive eggs food transit study took almost a month to get the results on, and the only info I got was they don't see a problem. Not sure what that means as we were mainly looking at it for suggestions about either over slow transit/retention, or dumping syndrome. But I can only assume they don't think those are concerns in my case.

and finally my dermatoligy appointment came around... right at the time I'd had and recovered from a massive sunburn (one of the worst I ever had, it actually upset my digestive system a bit for about a week) but the burn cleared in about 4 days. and then we had sticky humid weather. and between the two things the inflamed scaling skin that was the point of the visit had nearly cleared up (it's resurfacing a bit now) but I had forsight enough to take some pictures to show. and my scalp, one elbow, some scars from past spots, and the points where my ears connect to my head where the skin keeps splitting were looked at, as well as the callouses that have formed on my eyelids. The solution provided is lotion $:-\$ . Which annoys me. it doesn't seem to occur to them to discuss or try and understand how this might fit in to the broader health state and how I used to have similar issues after highschool but before I turned 30. But a few months after digestive illness hit it went away and didn't come back for 8 years until I had improvements in my digestive illness.

So it's a bit of a mixed bag. No idea why I'm struggling with food and illness. But we also have a decent sized list of things it's most likely not.

Meanwhile I've got to keep pressure on to find a way to broaden my diet watch my nutrition, and find more clues as to what is causing my symptoms. I'd say I've been pretty positive about it.

Aside from that I've had my first depressive/anxiety attack in a couple weeks today. It was another woken up early and can't calm down enough to sleep episode. some heart racing, shortness of breath, shivering, weakness, and moodiness. after a couple of hour I drifted into a few fits of restless sleep again before giving up and getting out of bed. I've been doing my best to work through it today and I don't know if effort of the fact that today was a B vitamin day made the most difference.

aside from that all my joints hurt lately. in large part I'd chalk it up to Friday we replaced the cupboards in the kitchen and doing so meant I had two hour sleep that morning, and then that night i slept 15 hours straight and woke up achey. that and the weather switching from 15 dgrees C to 30 degrees C between night and day. and off and on being humid and heavy rains. Though it might also have to do with changes in b vitamins, my diet and hydration levels.

and that's where I'm at now.

rovingjack · « **Reply #198 on:** June 16, 2016, 04:14:41 am »

in conferring with a friend who wants to write an article about my health struggles I dug through my records and I'm wondering if maybe I should push the issue on getting all my thyroid levels tested. They regularly test my TSH which comes back in the lower third of the normal reference range. But looking through my data there has only been one test on my Free T4 levels. The reference range is up to 1.6o and my levels are 1.54.

symptoms of overactive thyroid: panic, heart racing, weight loss, digestive upset, malabsorbtion of vitamins, joint problems, bone loss, weakness and tiredness.

I'm not sure it would answer why I react to certain foods, but it may solve some of the digestive, nutritional, pain, fatigue and panic issues. that would be worth checking in my view.

rovingjack · « **Reply #199 on:** July 15, 2016, 09:24:29 pm »

still living off lentils, beef and potato. still occasionally have panic attacks though thankfully shorter lived and less severe most times.

I'm not sure whether it's dietary, the extreme hot and humid weather, stress or some unresolved issue from earlier when I had this problem but some of the episodes of muscle twitch are back and persisting for several days, and I'm having joint pain, and it causes me anxiety.

The joint pain may well be gout, or just weather related joint problems. It's also possible that the nightshade potatoes, red meat, and legumes may be contributing to the issue. I'm trying to add some of the variety of vegetables I ate before back in, keeping an eye on reactions.

Far more concerning to me is the fact that I get twitches almost like the muscle those electro stimulation devices but seeming like random muscles around my body for periods of the day. It also presents with less fine motor control and occasional tremor when trying to do something requiring holding something.

aside from shivering fits a few times in the past, where it was mainly the legs and general shaking non-stop for a period of time and then going away, this is something new. The shivering fits I always figured were adrenaline or viral, and it was only ever an episode for less than an hour and then none for weeks or months. This new thing not only makes me question the past reactions, but in their own way are worrying.

I can be sitting somewhere and my head will very subtly flinch for no reason while I'm reading. or my leg will twitch like a response to something tickling my leg but not because of any sensation, just the response. and it can happen with either arm or leg, upper or lower, sometimes just a finger or the big toe. They don't really hurt. but it's never just one. it's always several over the course of a couple of minutes switching sites and then settles for a few minutes, and then repeats. It happens in small storms for a minute or two and they cluster over an hour or two and two or three clusters per day with no obvious pattern of when or why they occur. And of course my mind has several suggestions as to what it could be.

I'm trying to see if it's nutritional by trying to supplement and add foods that supply things that I'm not getting a lot of lately.

I've had weeks where I didn't have episodes, and it's been most obvious these last three or four days, which is also when the temperature has been in the range of 33degrees c low 90s F with humidity in the 60-80% range. But I had some similar problems earlier this year when the weather was colder and dryer.

I'm otherwise trying not to think about these things too much and just try and go about my life. The doctors having checked all the things we've looked have me scheduled for follow ups in 2 to 5 months, some don't even have followups. So I just work on projects, do some writing, reading, watching movies, chat with people and go to my counciling appointments each week.

I'm usually having some kind of fun, rewarding experience for the day, or in some way feeling like I've accomplished something but my health still reminds me that there is something wrong with me and we don't know what it is and it disrupts me. It makes it hard to look into going back to work, because I don't know if my dietary needs and my physical symptoms will be problematic or get worse at seeming random.

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