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Please help me get diagnosed :'( Been to 4 MDs

cant die yet :( for mom+sis

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#1 fighter

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Posted 27 March 2012 - 01:30 PM


Can you guys please help me out get diagnosed :'( I've been to 4 doctors, 2 emergency visits, multiple outpatient appts, just lost my Kaiser insurance last year, and now running out of money.

What I'm scared most are the rapid muscle wasting and rapidly growing belly I have.

Abdominal CT accdg to doctor, it's not water retention/ascitis but belly fat, I've been RAPIDLY AGGRESSIVELY losing muscle everywhere, I don't think it's ALS, I can still walk but my TONSILS are virtually gone, my facial muscle, my TONGUE looks atrophied on one side and feels strange, muscle everywhere else is shrinking, neck shrinking, abdominal muscle, arms, legs, thighs, feet, hands;

very FOAMY urine, my last urine test which had abnormal results only has 192 mg/dL protein which is not diagnostic for Nephrotic Syndrome BUT NOTABLY MY CREATININE IS QUITE LOW 0.81 last month, IT USUALLY IS 1.04 (last 2008), COULD THIS BE CREATINURIA??? HOW do you treat that? Kidney ultrasound revealed nothing. I had slightly elevated ALT liver enzyme,

sometimes my stool is pale. Again nothing conclusive in CT. First ultrasound result say just "fatty liver". I also have: hypertension, rapid heart rate. Thyroid is normal. Catecholamines normal. ANA normal. No diabetes. Actually could I have hyperinsulinemic hypoglycemia? My random glucose testing after eating yesterday was 89 (60-200)I took D-ribose 2 years ago and at one point I thought I was going to pass out (apprently it lowers blood sugar)


Had 2 bouts of pink eye for I don't know what reason.

Other symptoms:
Rashes on arms, wrist, hands that come and go every other day
Eczema-like scaling above elbows and on neck.
Get itchy feet when I take Vit. D3

I also have this unusual taste at the back of my throat similar to what low-carb people get, like almost a bitter smelly odor which I had when I tried doing the Paleo Diet (low carb). Could this have triggered it? Am I consuming up my protein instead of sugar? But my glucose is always normal and sometimes low even :'(

eGFR, BUN, seem to be all normal/within normal range. CO2 once a bit on lower end of normal range.

What could I be having? Please help :'( Other than Cushing, what else could it be, or the more practical question is what next test should I be asking for to save time and resources? I ask because I no longer have enough money for the testing, I might as well go ask for a head MRI to check the Pituitary and skip the 24hr cortisol test if it's gonna be false negative or inconclusive anyway. I can't die yet, I need to help out my mother and sister financially. PLEASE somebody thank you so much for your time

CURRENTLY TAKING WITH NO SIGNIFICANT EFFECTS YET:

CURCUMIN PHYTOSOME
PHOSPHATIDYLCHOLINE
GAMMA E
LISINOPRIL
ATENOLOL
WHEY
TOOK HMB FOR 10 DAYS.
COQ10

Edited by fighter, 27 March 2012 - 01:41 PM.


#2 fighter

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Posted 27 March 2012 - 03:09 PM

If I may add one unusual experience, I've also been going to the bathroom too frequently, two consecutive bowel movements in the morning, 1 hr or so apart, sometimes paler, a couple of weeks ago it was green in color, looked it up online, it said that bowel movement is faster than normal if it's green (bile). No change in diet whatsoever. moderate carbs 150g or less, moderate protein, good fats (MUFAs, sometimes PUFAS). Fast metabolism? Something related to the hormones right? Again, there was nothing conclusive in the CT :(

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#3 niner

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Posted 28 March 2012 - 02:54 AM

What kinds of doctors have you seen? This sounds like something that you might want to see an endocrinologist about. Do you drink alcohol?
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#4 fighter

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Posted 28 March 2012 - 03:02 AM

Hi, niner, no I never have drunk alcohol other than dishes with cooking wine. I don't smoke either. I've gone to Internists. Right now I'm going back and forth with either a kidney problem really, or Cushing's syndrome. Next step for me is probably get a PCR and low dose dexamethasone or 24 hr cortisol. I just don't have the money for it :'( Hopefuilly I can find charity outpatient programs. Wish I didn't have to think about money which delays my visits :(

Can i note something, I took D-Ribose 2 years ago one time and almost passed out. I didn't eat enough that day and came to find out that it can cause hypoglycemia and hyperinulinemia. I didn't start noticing the frothy urine until after that incident. What could this be?

Right now I notice that the urine has been having a stronger odor, and much foamier and frothier after 3 urine breaks. Before it would take overnight to have such effect.

Reason why I'm having doubts about Cushing is my weight gain is in my belly area and my thighs and legs. I thought Cushing was more on the upper part of the body, although my face got puffier too, but the leg, thigh weight gain is not in the textbook definition of Cushing

Please keep me in your thoughts and I would appreciate any other advice

#5 Hebbeh

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Posted 28 March 2012 - 03:38 AM

D-ribose and HMB are typically bodybuilding supps. What other supplements or drugs have you taken in the last 2 years? Any other bodybuilding supps? Any prohormones or designer hormones...over the counter or otherwise? Any weight loss supps, stimulants, preworkout supps, or herbs (or anything) from bodybuilding or fitness sites or otherwise?

#6 Luminosity

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Posted 28 March 2012 - 04:40 AM

(My post above has some mistakes in it but I can't edit it for some reason. Please read this instead.)

Whoa.

I think that your best bet is Chinese Medicine. They can diagnose, and treat you. It is usually the best bang for your buck. It's what I would do if I was you. It's what I've done for myself. You can find some more information about this below. Read the whole thread.


http://www.longecity...inese-medicine/

There's a post about someone else who went haywire after taking Ribose.

http://www.longecity...longed-ketosis/

This is what the guy said:

______________________________________________________________________________________________________________________________

Our friend who took D-Ribose, now having proteinuria, prolonged ketosis




Hey guys we're trying to help out our friend who's been having some unusual symptoms since last year.


  • She took D-Ribose and most likely OD'd a little bit because she felt very sick. She said she didn't eat much that time and was on low-carb diet.


  • We suspect her sugar got so low because I found out that D-Ribose actually lowers blood glucose.


  • Since then she's been having ketosis breath (bad breath and sign of either low carb or diabetes) nonstop despite eating > 150g carbs and stopping D-Ribose.


  • Her fasting glucose is normal, her doctors don't know what to do.


  • Now she's been leaking protein and her tummy's getting bloated. Could this be something like gluconeogenesis but without diabetes? Has she been *TOO TOLERANT* of eating sugar that her insulin became so active?


  • Creatinine, EGF normal, 24hr urine protein too much


  • If so what can we make her take or do? She said it's hard for her to eat >250g carbs (SAD diet) to check if that's what's causing it.

_______________________________________________________________________________________________________________________________

According to Chinese medicine your kidneys need help, as probably do other internal organs.

People with kidney issues are often told to avoid spicy foods, especially red pepper. They avoid alcohol, sodas, and sometimes acidic foods and drinks. Caffiene and black or green tea are probably something to avoid. People with kidney issues may be advised to eat a bland diet. In Chinese medicine it would be especially important NOT to drink cold or iced drinks or eat cold food. These kinds of things will not cure the problem but will help it not to get worse.

Do not take any recreational drugs or anything else bad. Take good care of yourself. Do not do any extreme regimens. Do not consume tobacco.

You really need to find the best acupuncturist/Chinese herbalist in your area and go there.

Some people find their western diagnosis by plugging their symptoms in to a resource (like Pub Med?) until they find something that fits. After that you should look for a specialist who treats that disease in your area. Reverse engineering. Some rare syndromes/diseases are only diagnosed properly for a few people. Which is WHY I like Chinese Medicine. They can help you now, and diagnose you too.

Although I would not do it, if you want to keep going to Western doctors, a Nephrologist (kidney specialist) might be useful. An Endocrinologist might help (they treat diabetes) but you almost always have to be referred and sometimes wait. Whatever specialist that treats the diseases your symptoms most resemble is another possibility. Finding the best specialist in that area would help. A patient support group would be a good place to find that out. Still, for the money that would cost, you could be well on the way to a cure from herbs/acupuncture in a few weeks so I hope you go that way.

Waste no time.

Five years ago I was in a wheelchair, now I walk 90% of the time. I have/had no health insurance. I did it all out of pocket, holistically.

Below is a list of prayer lines. If you are open to it, consider asking them to pray for guidance so you know which way to go. The other lady ended up in the hospital.


http://www.longecity...6-prayer-lines/

Edited by Luminosity, 28 March 2012 - 04:50 AM.

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#7 Luminosity

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Posted 28 March 2012 - 05:48 AM

Have you been screened for a burst pancreas or gall bladder? What are the symptoms of that? Something very weird is happening with your internal organs.

#8 fighter

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Posted 28 March 2012 - 04:02 PM

D-ribose and HMB are typically bodybuilding supps. What other supplements or drugs have you taken in the last 2 years? Any other bodybuilding supps? Any prohormones or designer hormones


Hi, I've never taken any steroids or hormones. However, I had severe acne then and took a supplement called Guggul / Guggulsterone. Apparently it is a plant steroid, I took it 2006-2008.

Other symptoms I experience today:
1. Diffuse hair loss all over body
2. I took a photo and compared my face from 3 years ago and I do indeed now have a round face :'(
3. When I take MAGNESIUM, ZINC, VITAMIN C, or PHOSPHATIDYLSERINE, I get acute headaches, migraine. Very painful. Could this be related to cortisol/ACTH in the pituitary? If so, does it mean one has too much cortisol or something? I tried taking C, PS to alleviate cortisol.

I'm not sure if it's the guggul that is causing it, It's been years, also it says it's a Farnesoid X Receptor inhibitor. Any knowledge on that?

Another question if I may to all, is Vitamin D a steroid too? It's a hormone right?
And are plant sterols considered steroids? Like Beta Sitosterol from soy or nettle root

@Luminosity: Abdominal CT 4 weeks ago was normal. Abdominal and Kidney ultrasound "normal", fatty liver.


Thank you for all your interest/concern. Please keep me in your thoughts. I can't die yet I still need to help out my mother and sister with expenses :'(

Edited by fighter, 28 March 2012 - 04:07 PM.


#9 1kgcoffee

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Posted 28 March 2012 - 04:08 PM

Sounds like something to do with your bile duct or gallbladder
Bile duct cancer,
http://www.cancer.or...ancer-diagnosis

#10 fighter

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Posted 28 March 2012 - 04:14 PM

Sounds like something to do with your bile duct or gallbladder
Bile duct cancer,
http://www.cancer.or...ancer-diagnosis


Hi, that's why I had abdominal CT with 3 contrasts, and ultrasound, they found nothing, the ER doctor's concern was cancer too and he was just all so happy, "good news" no cancer. Ultrasound was at another hospital for second opinion, same thing. I don't have jaundice either. Only one liver enzyne was slightly elevated and non conclusive. Ultrasound just said "fatty liver". It's so frustrating :'(

Edited by fighter, 28 March 2012 - 04:16 PM.


#11 niner

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Posted 28 March 2012 - 09:59 PM

Good find on the D-ribose / proteinuria thread, Luminosity. I had completely forgotten that. The similarities in that and fighter's case are huge.

Fighter, could you tell us your height, weight, age, and waist diameter at the widest point? PM me if you don't want to post it.

#12 fighter

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Posted 28 March 2012 - 10:08 PM

Good find on the D-ribose / proteinuria thread, Luminosity. I had completely forgotten that. The similarities in that and fighter's case are huge.

Fighter, could you tell us your height, weight, age, and waist diameter at the widest point? PM me if you don't want to post it.


I am 5'10.5 26 and 205 lbs. My excess weight is situated in my abdominal area and thighs. Last month I only weighed 195 lbs. My regular weight had always been 155 lbs. So I am around 50 lbs overweight :'( Can you kindly find a 24 hour cortisol urine test similar to econolabs.com that is cheaper? I was hoping to find a low-dose dexamethasone test but the hospital here doesn't seem to offer it.

If I still had insurance I wouldn't worry about all this :'( But thank you really for still responding.

I currently take 500mg Doctor's best curcumin
1 Vitamin C 500mg

Also 1-2 capsules of Curcumin Phytosome. What dosage do you think is fine?

I forgot to mention I was prescribed with Anastrozole/Arimidex last October because I also developed gynecomastia (another cushing symptom). The progressive muscle wasting seemed to coincide the time I started taking Anastrozole. I took a very small dose 0.25mg every other day <== could this have worsened the problem too? I notice that Spironolactone is Rx'd to Cushing patients to prevent ACTH action, but it's also an anti-androgen, opposite of anastrozole. Curcumin is anti-androgen though too right? Hopefully it's just a matter of time for it to work :'(

#13 Luminosity

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Posted 30 March 2012 - 01:44 AM

I'm glad your ultrasound was normal.

Your sensitivity to the vitamins and minerals could be caused by lowered functioning of the kidneys. They could be having trouble processing these things. If the guggul stuff was a steroid-like substance, steroids can be damaging to the kidneys. Things that would cause your cortisol to go out of whack would also be damaging to your kidneys. Chinese medicine including the diet and lifestyle components would be the best way to heal your kidneys. The Chinese consider kidneys to be the most important organ and the seat of the life force.

I'm not sure we have a good picture of your medical, and medication history. Now you tell us you had gynecomastia and took a drug for it and that's when the wasting started. This is one reason why Western medicine is not my choice. You go in with one thing and you come out with another. When I was young, in the seventies, no males had gynecomastia. Now it is common and even has a popular name. This coincides with decades of putting artificial hormones in our food supply and estrogenic chemicals in the environment. A wiser choice to treat that problem might have been getting the hormones out of your diet and going non-toxic and fragrance free in your home and personal care products. Never use those air fresheners/room sprays Glade scent thingies. They are very very bad. Chinese medicine could have fixed the gynecomastia along with diet and lifestyle. Marijuana is estrogenic too.

I also wonder about any extreme regimens/diets/supplements and recreational drug use including marijuana or anything else. I don't have a clear picture of your supplement history or why you are taking various exotic supplements. You took a steroid like substance to treat acne? Would you mind telling us why? Why are you taking curcumin right now? It is a powerful substance that doesn't agree with everyone. I don't know if you eat properly. I wonder if you take energy drinks? Unless there is a physical reason for it, try to avoid skipping any meals as this would make the problem worse according to Chinese medicine.

The more you can tell us about your diet, supplement, substance use, medical and lifestyle history the more we might be able to help you. Any fasting, weight loss regimens, cleanses, bodybuilding? If you write about supplements, it would help to include as much info as possible about that supplement including why you are taking it and where you got that info from.

The wasting could have been caused by the drug basically due to organ damage. There are many levels of organ damage. A lot of it will not show up on Western tests and cannot be treated well by Western Medicine. It can be treated by Chinese Medicine. Use your resources wisely.

Edited by Luminosity, 30 March 2012 - 02:04 AM.

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#14 fighter

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Posted 30 March 2012 - 01:59 AM

I'm not sure we have a good picture of your medical, and medication history. You just suddenly throw out that you had gynecomastia and took a drug for it and that's when the wasting started.


No I didn't mean to imply that. That's when the wasting started to worsen. Around December 2011. I've already noticed my chest muscle diminish prior to that. The gynecomastia is also indicated in Cushing's. I'm in so much pain today hopefully I could get seen ASAP

But how do you STOP the WASTING?? I am taking Lisinopril 10mg it is meant to stop proteinuria. Curcumin is also said to stop muscle wasting. What gives?? How much curcumin is effective?

#15 Luminosity

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Posted 30 March 2012 - 02:16 AM

I'm sorry you are in so much pain today.

I've told you what I think you can do to stop the wasting and all the rest. I wish I could physically pick you up and take you to the acupuncturist but I can't.

Curcumin will dissolve things within your body. It doesn't always dissolve what you want it to. For me, it didn't so I stopped taking it. It's not something I would take a higher than recommended dose of at any time. I'd be more comfortable if you stopped taking it.

Cushings is again, related to the kidneys/adrenal glands. Taking steroids for it as may be recommended for inflammatory diseases involving the kidneys will have bad long term effects. I've seen people who take steroids regularly die in their early fifties.

Taking a pill for every problem increases the chances of more problems. If your kidneys don't function optimally (which is 100% what is happening here) you are MORE likely to get serious side effects from Western prescription medications. Your level of kidney damage may not show up on Western tests but according to what I know you have it.

I don't want to harangue you so I have to stop repeating myself here. If you want my advice from me, address me specifically.

If you keep on doing what you're doing, you'll keep on getting what you're getting.

Edited by Luminosity, 30 March 2012 - 03:15 AM.


#16 niner

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Posted 30 March 2012 - 11:24 AM

I think this focus on the kidneys is a red herring. There isn't one case here, but two- both fighter and sentrysnipe's friend. Here are the similarities:

Ate a low carb diet

Took d-ribose, had a hypoglycemic event

developed proteinuria confirmed by 24hr urine

creatinine and egfr were normal. This is telling us the kidneys are ok.

Ketosis breath

Development of extreme central obesity

Sadly, both people lack health insurance (yay for the best healthcare system on the planet...)

In addition to the similarities above, fighter has reported:

muscle wasting

diffuse hair loss

gynecomastia and roundish face suggesting a cushingoid condition.

Questions for fighter:
Were you doing the low carb diet at the time you took the d-ribose?
What was the reason for your ER visit?
What was the brand of the d-ribose, and/or where did you get it?

Edited by niner, 30 March 2012 - 11:28 AM.

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#17 fighter

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Posted 01 April 2012 - 06:31 PM

Questions for fighter:
Were you doing the low carb diet at the time you took the d-ribose?
What was the reason for your ER visit?
What was the brand of the d-ribose, and/or where did you get it?


Can I ask you something first? Could this be GLUCONEOGENESIS? I ask because I read "Biotin" PROMOTES GLUCONEOGENESIS, and I remembered it's good for the NAILS, and my nails are UNUSUALLY HARD AND STRONG at this moment even though I don';t take Biotin, but my question is is there A SUPPLEMENT TO PREVENT GLUCONEOGENESIS?


Yes I was trying to do a low carb diet back then but it was not a proper low carb, i was skipping meals and didn't eat enough calories to reach >1500cals a day

I went to the ER because I thought my tummy is retaining fluid, come to find out there's no fluid, doctors said it's fat, so they thought I might have Cushing's

Brand is Doctors Best but I don't think it's the brand thats an issue

Thank you please keep on responding I will stay strong

#18 greensweater

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Posted 05 April 2012 - 10:01 AM

Metformin inhibits gluconeogenesis... But it is a drug, not a supplement, and its not something someone in your condition shouod mess around with without a doctors supervision/prescription.


How old are you, where do you live, and what is your employment status... Depending on the answers to those questions there may be options for medical care which you have not considered...

#19 CaptainFuture

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Posted 09 April 2012 - 07:29 AM

Just one small comment on the Vitamin D. The Vitamin D Receptor is also implicated in allergies, so supplementing Vitamin D could increase your allergic response. If I was you I would try to stay away from ALL supplements for one or two weeks in order to find out if this changes something.
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#20 Ben

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Posted 09 April 2012 - 11:12 AM

lot of it will not show up on Western tests and cannot be treated well by Western Medicine. It can be treated by Chinese Medicine. Use your resources wisely.


Riiight. I think the OP is after something that works. Something based on evidence--like the Western medicine you've so little confidence in* (not voodoo or baseless assertions.)




(*There's no gingsang and tiger penis in Chinese hospitals with their Western Medicine trained doctors. Of that you can be sure.)

Edited by Ben, 09 April 2012 - 11:13 AM.

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#21 niner

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Posted 09 April 2012 - 12:48 PM

Just one small comment on the Vitamin D. The Vitamin D Receptor is also implicated in allergies, so supplementing Vitamin D could increase your allergic response. If I was you I would try to stay away from ALL supplements for one or two weeks in order to find out if this changes something.


Fighter's case has none of the hallmarks of an allergic response. Further, the only relationship I've seen in the literature between vitamin D and allergy is that LOW vitamin D status is associated with MORE allergy, so it looks like you have it backwards.

#22 CaptainFuture

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Posted 09 April 2012 - 06:41 PM

Fighter's case has none of the hallmarks of an allergic response. Further, the only relationship I've seen in the literature between vitamin D and allergy is that LOW vitamin D status is associated with MORE allergy, so it looks like you have it backwards.


In his first post he said:

Get itchy feet when I take Vit. D3


I took this as allergic response.

I know that low Vitamin D is connected to allergies in many studies, but as always it's difficult to make definite statements. A majority of people benefit from Vitamin D. However, in 80% of cases where I took Vitamin D for shorter or longer periods, I always ended up getting itchy skin and eyes within hours after ingestion. I tried different Vitamin D supplements, including liquid form, to exclude an allergic response to fillers/other ingredients. I know that this sounds weird but here are some studies which can partly explain a connection:


More than a dozen Vitamin D regulated genes are implicated in the
induction of allergies:


IL12B, IL12RB, SPP, CD14, CD23, VDR, TNF, GC, IFNG, IL1RN, IL8, CARD15, IL4R, ALOX5, FLG, SOCS3 und ADRB2R

These would account for nearly a half of the typical allergy genes.


Wjst, M., Altmüller, J., Faus-Kessler, T., Braig, C.,
Bahnweg, M., André, E. (2006): Asthma families show transmission
disequilibrium of gene variants in the vitamin D
metabolism and signalling pathway. Respir Res in press.

Morahan, G., Huang, D., Wu, M., Holt, B.J., White, G.P.,
Kendall, G.E., Sly, P.D., Holt, P.G. (2002): Association of IL12B
promoter polymorphism with severity of atopic and non-atopic asthma in
children. Lancet 360:455–459.

Raby, B.A., Lazarus, R., Silverman, E.K., Lake, S., Lange,
C., Wjst, M., Weiss, S.T. (2004): Association of vitamin D
receptor gene polymorphisms with childhood and adult asthma. Am J
Respir Crit Care Med 170:1057–1065.

Other studies conclude:


J Immunol. 2004 Sep 1;173(5):3432-6.
Vitamin D receptor-deficient mice fail to develop experimental
allergic asthma.
Wittke A, Weaver V, Mahon BD, August A, Cantorna MT.
Source
Department of Nutrition, Immunology Research Laboratory, Pennsylvania
State University, University Park 16802, USA.

"We suggest that excess supplementation of vitamin D could influence
the development of a sustained T(H)2 response, leading to an
increasing prevalence of allergy, whereas vitamin D might hold
promising beneficial effects in airway eosinophilia."

"Vitamin D receptor-deficient mice fail to develop experimental
allergic asthma."


Ann N Y Acad Sci. 2004 Dec;1037:84-95.
Infant vitamin d supplementation and allergic conditions in adulthood:
northern Finland birth cohort 1966.
Hyppönen E, Sovio U, Wjst M, Patel S, Pekkanen J, Hartikainen AL,
Järvelinb MR.

"We observed an association between vitamin D supplementation in
infancy and an increased risk of atopy and allergic rhinitis later in
life."



#23 tham

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Posted 09 April 2012 - 10:36 PM

lot of it will not show up on Western tests and cannot be treated well by Western Medicine. It can be treated by Chinese Medicine. Use your resources wisely.


Riiight. I think the OP is after something that works. Something based on evidence--like the Western medicine you've so little confidence in* (not voodoo or baseless assertions.)




(*There's no gingsang and tiger penis in Chinese hospitals with their Western Medicine trained doctors. Of that you can be sure.)






You can't even spell "ginseng" properly.

What puts you in a position to discredit another form of medicine
which you are so ill-informed in, just because you are only familiar
with the Western allopathic method which you happened to be
brought up with ?

The rest of the world's cultures' countless other forms of healing
are nonsense ?

Did it ever occcur to you that no less than one-quarter of all drugs are
taken from, or derivatives of, herbs ?

The Native Americans' timeless plants, many of which since have
been studied, were all hocus-pocus brews concocted by their
village medicine man using witchcraft and voodoo ?






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#24 tham

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Posted 09 April 2012 - 10:50 PM





As I had noted earlier on too around this :

" Rashes on arms, wrist, hands that come and go every other day
Eczema-like scaling above elbows and on neck.
Get itchy feet when I take Vit. D3 "

It's apparent you have some kind of autoimmune disorder based
around an imbalance of Th1 and Th2.

Basically, an excess of Th2, or deficiency of Th1. Eczema is basically
a Th2 excess disorder.

I believe Captain Future is on to something with vitamin D3. I didn't
realize too that D3 was implicated in allergies.


If your doctors can't help you, perhaps you could try Chinese TCM,
as the others have suggested. TCM principles centers around the
kidneys, and treating any imbalance therein.

Another alternative is homeopathy. I'm not sure how much it costs
there, but homeopathy is probably the cheapest form of medicine
in Malaysia at the moment. A visit to a private homeopathic doctor
won't cost more than RM 30 or 40 (US $10 to 13).

Chinese TCM doctors, on the other hand, don't come cheap in
Malaysia these days.


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#25 niner

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Posted 09 April 2012 - 11:08 PM

In his first post he said:

Get itchy feet when I take Vit. D3


I took this as allergic response.

I know that low Vitamin D is connected to allergies in many studies, but as always it's difficult to make definite statements. A majority of people benefit from Vitamin D. However, in 80% of cases where I took Vitamin D for shorter or longer periods, I always ended up getting itchy skin and eyes within hours after ingestion. I tried different Vitamin D supplements, including liquid form, to exclude an allergic response to fillers/other ingredients. I know that this sounds weird but here are some studies which can partly explain a connection:


I stand corrected, Cap'n. I had forgotten about the itchy feet, and was only thinking about the metabolic dysfunction. You're right that there is some murky association between vitamin D exposure and development of asthma/allergies, but it's pretty tough to figure out what's going on there. It looks like most of the data points to vitamin D deficiency being a bad actor with respect to allergy, but then there are occasional papers that point the other way. This recent review is pretty good. It looks like high levels of D supplementation might be a particular problem with infants. I'm not sure what kind of nut would give 2000IU/d to an infant, but apparently it's been done and doesn't work out so well.

#26 Luminosity

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Posted 10 April 2012 - 02:37 AM

Thanks Tham.
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#27 nameless

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Posted 10 April 2012 - 05:48 AM

Some quick questions -- did your symptoms coincide with any of the medications you have taken? Or I should say, anything you are currently taking?

Did you start the beta blocker + ace inhibitor before or after your symptoms started?

Just wondering if some of your symptoms could be an allergic reaction or side effect to something you are taking there.
If it was me, I'd drop all supplements for now too.

Did your doctors give any diagnosis at all? And did you get a full endocrine workup? What was the cause of the gynecomastia?

Edited by nameless, 10 April 2012 - 05:51 AM.


#28 niner

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Posted 10 April 2012 - 11:26 AM

The OP's symptoms started with the use of D-Ribose while in a low-carb state. I would have had a tendency to look askance at this were it not for the fact that another person recently reported identical symptoms starting with the exact same trigger. The OP is uninsured, as was the other person with the same condition. He has only seen a random collection of general practitioners so far. I agree that he needs an endocrine workup; that would be my first stop. Perhaps there is immune/autoimmune involvement that's leading to an endocrine dysfunction. I don't know how ribose would bring that about, however, and still feel like the allergy angle may be a red herring.

#29 CaptainFuture

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Posted 10 April 2012 - 02:47 PM

This recent review is pretty good. It looks like high levels of D supplementation might be a particular problem with infants. I'm not sure what kind of nut would give 2000IU/d to an infant, but apparently it's been done and doesn't work out so well.


Thanks for posting the review, very interesting.

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#30 fighter

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Posted 30 April 2012 - 11:26 PM

Hello, I am still alive but have lost a lot of muscle significantly. Feet and hands are very painful as well as my throat. The 24 hr cortisol test just came back today:

Urine 24 hour volume
1300mL

Ur Creat(Cort) <-- ?? idk what this is 2.15 (0.6 - 2.5 g/24 hr)
Cortisol, Free, Urinary 73.2 (4.0 - 50.0 mcg/24 hr)

Urinary Creatinine Random 371.2 (20 - 370 mg/dL)
Urinary Total Protein Random 33.7 (1.00 - 11.9 mg/dL)

The last three are all abnormal. Cortisol is high. The one who saw me was a NP, not an MD so she didn't know the implication of having a high free cortisol. Should I get an MRI now? :'(

Please keep me in your thoughts




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