Poll What Have You Not Been Tested For?

[Cort]

I would LOVE to see a list of test patients should consider. I've had CFS for over 20 years and really didn't consider testing for anything until the last couple of years when I got medical insurance...yeah medicare. The doctors I have gone to over the years and even recently are clueless, but usually will order a test if I suggest it.

Definitely going to do that...

Any more ideas from anyone?

 

[greg hay]

All but sjorgens.
waiting for all results.

 

[Larissa]

My vitamin D level was recently tested and it was really low. Since starting on prescription vitamin D I have noticed a difference in my pain level and I haven't been getting as many muscle spasms.

 

[Folk]

Definitely going to do that...

Any more ideas from anyone?

I would like to see a list of cures please.

 

[tatt]

I don't know why that made me laugh but it did!

Thanks....

because if you don't laugh you'd cry?

Some things have symptoms quite similar to ME. Coeliac disease is one thing that is easily mistaken for ME and there is a simple blood test. You have to be be eating gluten and have eaten it for a while for the test to work. However as some people who test negative feel benefits from a gluten free diet if cash is an issue skip the test and try a gluten free diet anyway. If cash isn't a problem have the test then try gluten free anyway. Gave me life back for years and I thought I'd found my problem until excessive exercise made me sicker than before.

I began to recover again after supplementing with vitamin D. Maybe that was coincidence, maybe it was because I took some of my vitamin D in probiotic yoghurt but I wasn't recovering before that. If you are bed or housebound you WILL be deficient, the test will only tell you by how much. Evryone housebound or bedbound should be supplementing - and anyone else who doesn't see much sun so a lot of us in winter. In the UK between October and March no-one makes vitamin D, that's true of similar latitudes in America. I'm not cured but I wish I'd taken more of it sooner.

Cort you posted something recently about a doctor "curing" people with a vitamin D protocol. Get into the sun when you can, supplement if you can't.

Most people in the UK don't have health insurance, btw, we have the NHS. That means we don't get unnecessary testing and quack "cures" but also that we don't always get tests that would be helpful unless we pay for them. I've paid for a T3 test, vitamin D test and liver scan - before you fork out your own money you investigate carefully . Wouldn't suggest everyone had the liver scan, would add Lyme Disease if I could remember ever having a tic. I'm thinking of doing 23andme and a gut flora test.

 

[Folk]

Cort you posted something recently about a doctor "curing" people with a vitamin D protocol. Get into the sun when you can, supplement if you can't.

I did, but in this case he goes way beyond what sun can offer. He uses megadoses of Vit D, to reach levels like 400 when 70-80 is the maximum formally recomended

 

[Carole]

to at least séarch for the E in M.E?
I declined btw, I was bugfree by then

Did have SIBO test with stool study. Also Neuro wanted to do Spinal tap for MS. I have not had it yet.

Adrenal is paramount for me. Take compounded supp of this daily.

How many are tested for EBV - CMV??

Was told to quit taking Vit D and Calcium as I have some Placque in arteries.

Carole

 

[fdotx]

I was recently tested for iron and it was 29 which is in the standard normal range but this doc says 50 should be minimum. Got it to 48 a couple months ago so probably higher by now but don't feel one bit better, in fact, worse. He also put me on bioidentical hormones and they did nothing. Have gotten my Vit.D up from 36 to 48 - that did nothing. Cortisol level is fine and I also for the first time had a C-reactive protein to test inflammation - very little inflammation. Thyroid has always been perfect. I don't think being out of range on these tests, although it's good to know and get levels optimum, is where the problem lies for most of us.

 

[Merida]

because if you don't laugh you'd cry?

Some things have symptoms quite similar to ME. Coeliac disease is one thing that is easily mistaken for ME and there is a simple blood test. You have to be be eating gluten and have eaten it for a while for the test to work. However as some people who test negative feel benefits from a gluten free diet if cash is an issue skip the test and try a gluten free diet anyway. If cash isn't a problem have the test then try gluten free anyway. Gave me life back for years and I thought I'd found my problem until excessive exercise made me sicker than before.

I began to recover again after supplementing with vitamin D. Maybe that was coincidence, maybe it was because I took some of my vitamin D in probiotic yoghurt but I wasn't recovering before that. If you are bed or housebound you WILL be deficient, the test will only tell you by how much. Evryone housebound or bedbound should be supplementing - and anyone else who doesn't see much sun so a lot of us in winter. In the UK between October and March no-one makes vitamin D, that's true of similar latitudes in America. I'm not cured but I wish I'd taken more of it sooner.

Cort you posted something recently about a doctor "curing" people with a vitamin D protocol. Get into the sun when you can, supplement if you can't.

Most people in the UK don't have health insurance, btw, we have the NHS. That means we don't get unnecessary testing and quack "cures" but also that we don't always get tests that would be helpful unless we pay for them. I've paid for a T3 test, vitamin D test and liver scan - before you fork out your own money you investigate carefully . Wouldn't suggest everyone had the liver scan, would add Lyme Disease if I could remember ever having a tic. I'm thinking of doing 23andme and a gut flora test.

The 'gut' issues are so important, and I have learned a lot after going through defecography, biofeedback for gut etc. at a large research medical center. I had been dx with 'irritable bowel - constipation only' after a neck/ pelvis injury. Finally, got dx with long, redundant, tortuous colon. The barium studies were crazy - loops and twists every where. Worked okay for 49 years until neurological injury. Then , terrible pain, shut down of function. Later, large sigmoid ulcer due to telescoping of sigmoid colon. Finally healed with acupuncture.

I heard other 'gut, stories in my large support group here in L. A. Four others had surgery for 'twisted bowel.' Remembered that my Mom's cousin died from twisted bowel - age 56, had severe scoliosis, also great gifts - spoke 5 languages. I began talking with others on line about these long, redundant colons. One woman had abdominal laparoscopic look and see. Surgeon found abnormal band of tissue from one ovary to bowel. He clipped it - no more bowel problems.

I learned that malrotation/ malattachment of the colon or small intestine is not uncommon. Please read about this. Not much research. Found one group of researchers who felt that long, redundant colon was one variation of these malrotation disorders. The intestines start as a long, straight tube in early fetal development and is outside the gut wall in the umbilical cord. About 4-6 weeks post conception it begins to rotate 270 degrees counterclockwise and return to inside the abdomen.
So, mistakes or variations can produce abnormal bands of tissue or abnormal twists and kinks. Complex.

Yes, my vitamin D was quite low and I live in Southern California. Makes no sense.

 

[Merida]

These tests seem important and basic, and may lead to some new treatment that helps. However, how we respond to our environment seems inextricably tied to how our central nervous system is functioning, and secondarily, the gut. There is much variation in structure in both areas.

Professor Valentyn Serdyuk ( Odessa Univ. / orthopedic surgeon specializing in scoliosis treatment) writes that the structure of the complex lumbosacral region is as individual as each of our faces. Also, anatomical variations in the cervical spine occur frequently and can create conditions that lead to compression of vertebral arteries, veins, and spinal cord rootlets. ( from : Scoliosis and Spinal Pain Syndrome, Valentyne Serdyuk, 2013)

 

[Carole]

These tests seem important and basic, and may lead to some new treatment that helps. However, how we respond to our environment seems inextricably tied to how our central nervous system is functioning, and secondarily, the gut. There is much variation in structure in both areas.

Professor Valentyn Serdyuk ( Odessa Univ. / orthopedic surgeon specializing in scoliosis treatment) writes that the structure of the complex lumbosacral region is as individual as each of our faces. Also, anatomical variations in the cervical spine occur frequently and can create conditions that lead to compression of vertebral arteries, veins, and spinal cord rootlets. ( from : Scoliosis and Spinal Pain Syndrome, Valentyne Serdyuk, 2013)

I have both Scoliosis and Endometreosis. Which is scarring and fusing of the bowel to other organs. Bladder,
different areas of bowel. Have had the scar tissue removed several times. No more though.Most of mine the Dr said was caused by Hormones. Of course this was years and years ago.

Very interesting comments on the bowel issue though.

Carole

 

[Merida]

Carol, and scoliosis has known links to Chiari and tethered cord syndrome, where the spinal cord may be a little too short for the spinal column. Or, the spinal cord us being pulled downward by the anchoring tissue, the film terminale. So important to think about structure and function.

 

[Carole]

Carol, and scoliosis has known links to Chiari and tethered cord syndrome, where the spinal cord may be a little too short for the spinal column. Or, the spinal cord us being pulled downward by the anchoring tissue, the film terminale. So important to think about structure and function.

Great post and very informative. Actually my Chiropracter was the one to guess at Scoliosis and he was right.

Actually will print off your post for my Gyno Dr. and Chiro. Do have to do stretching and Yoga on a continual basis.
works wonders-even for the gut.

Thanks,

Carole

 

[Merida]

Carole, this is so much to this structure and function thing. Another good site ( and book) is The Downside of Upright Posture by Michael Flanagan. He is a neurological chiropractor. Wonderful - understands this. You can ask questions. Such a journey.

 

[Carole]

Carole, this is so much to this structure and function thing. Another good site ( and book) is The Downside of Upright Posture by Michael Flanagan. He is a neurological chiropractor. Wonderful - understands this. You can ask questions. Such a journey.

Merida- Will get the book. Also have worked with a Osteopath that helped. However my Chiro has been the best.
I was a Dental Hygienist for 25 years and bent over on a continual basis working on patients. I do find now
I HAVE TO DO THE STRETCHES DAILY. SOMETIMES 2-3 TIMES 10 MIN AND YOGA. HAVE FOUND PT IS TOO
MUCH FOR ME.

THANK YOU SO MUCH-MOST INFORMATIVE!!!!!

Carole

 

[Folk]

Well my turn to ansewr the poll.

I havn't had the Lip Biopsy (and won't by now), the Candida (if it becomes less controversial or have a more accurate test I'll, but I just did a stool test for gut stuff and waiting the results) and the MTHFR which I'll soon.

Waiting results for Lyme, Mold and Herpes.

T3 was in the normal range but some doctors suggested I would benefit from treatment anyway... Some said I wouldn't.

I'm totally off gluten even though I felt no difference from it. The worst for my gut is fruits.

SIBO negative, but had the worst pain of my life (and HEY I have 8 years of fibro to talk about pain! hehe) after the test. It was like going into labour so a doctor suggested it was a false negative. I'll do it again and perhaps try to treat it even if it turns out negative again.

Testosterone OK.

 

[Merida]

Definitely going to do that...

Any more ideas from anyone?

What about the enzyme lactate dehydrogenase (LDH ) deficiency ? Usually docs test to see if LDH is elevated - indicating tissue destruction. However, my LDH is consistently ( 5-6 tests) 60 to 70% of normal values. I understand that LDH deficiency is considered a true glycogen storage disorder, type XI.

Glycogen storage disorders cause hypoglycemia and/or deposition of abnormal amounts of glycogen ( or intermediate metabolites) in tissues. (Anyone else besides me have these lumpy, fatty deposits all over ?? ) The major manifestations of disorders of glycogen metabolism affecting muscle are muscle cramps, exercise intolerance, easy tiring, an progressive weakness.

LDH ( there are 2 forms) is involved in the interconversion of lactate and pyruvate. I remember that Dikoma Shungu showed that CFS is linked to elevated levels of lactate in CSF. Never heard why the lactate may be elevated ? They thought maybe decreased blood flow and oxidative stress, which causes glycolysis to kick in - lactate is end product of this anaerobic metabolic activity. But what about lack of LDH, which would slow the conversion of the lactate back to pyruvate ? Hence, a 'lactate back log ?" Wouldn't this also promote acidosis ????

I have been wondering about the processes which may produce the various physical anomalies I talk about.

 

[Merida]

One more distant, foggy memory - There were several published reports ( from nutritional journals) that said LDH was depressed in fibro patients ???

 

[John Moore]

Just thinking about this topic can trigger Post Exertional Shutdown for me.

So many doubts, fears and misgivings about the competency of the first MD(s) I came in contact with after the lightning bolt onset. Add to that my extremely low competency around how to interact with mainstream docs at the time. At 46 years of age this was my very first encounter with a doctor that didn't include having my skin sewn up, I was literally never sick a day in my life up to then and had no idea how to talk to doctors who had less than 8 minutes per patient under managed care.

I stupidly assumed that I was going to tell him I was unwell and he was going to fix me! I went to my first appointment wild eyed and after my pleas for help he nonchalantly handed me a boatload of Zoloft from his sample bin and told me to go away.

I tried to tell them I was depressed because I am sick, not sick because I am depressed. To this day I don't think that first doc believes I am not fixable with SSRI's. Heck, not more than 2 months ago my VA doc suggested I sign up for CBT! I like her alot, but it shows how constrained and clueless most docs are even now.

The folks at the VA are wonderful. Very caring unlike lots of private docs I have met, and the VA Rheumy was the first one to actively question me about the possibility of my having CFS. My trouble is that he gave me the dx. told me he was so sorry he could do nothing else for me and discharged me from his clinic. Case closed?! I went back to my primary and she offers me CBT...Ughh!

Anyway, I have had lots of testing. Liver biopsy, lumbar puncture, hormone replacement, adrenal testing, Vit D,(which they said I needed), iron overload, sleep study, pulmonary, cardiac, anti depressants and Lyme titer. L-Carnitine, D-ribose, CoQ10, etc.

Now that I am here I see that I need more work but with the VA as my only option for care, the chances of me getting a SIBO breath test et al, down there don't look good. The only thing that ever helped me came from alternative professionals in the form of colonic irrigation.

I had a total recovery for 3 glorious months in 2012 and would highly recommend. The nurse who performed mine rubbed my temples with essential oils, and threw in some foot reflexology! All in a wonderfully relaxing atmosphere I have never seen at a mainstream medical facility. At $210 for three sessions it was well worth it.

I have gone back but cant seem to catch that lightning again. I hope I stayed on topic, thanks for letting me ramble,

 

[justME]

ah yes going in there with the fix-me-face and leaving the docs office like this

with. a. prescription. for. multivitamins.

good ramble John!