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#1 of 35 Old 03-20-2007, 07:59 PM - Thread Starter
 
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I have felt like crap for a long time now. Tired, achey/weak, lethargic, sometimes dizzy and just a general "hazey" feeling. I have a headache DAILY. Never goes away. I have had the headache for about a year. No pain relievers help. I wanted also mention that I have the bladder disease Interstitial Cystitis and I was in a bad car accident about 3 years ago and had my spleen out. Don't know if those matter.

Anyhow, I went to the Doc a few weeks ago and they took some blood and checked my hormone levels, my thyroid, etc. ALL NORMAL.

I went again to get tested for Celiacs Disease (the entire panel) and they also did an allergy panel of the most common food allergies. ALL NORMAL.

Now what? What would you do? I'm so frustrated. I just want to feel better.

Parasite?
Yeast?

: Robyn : Increasingly crunchy Mama to Kya (8) , Makena (7) , and Keegan (4) :
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#2 of 35 Old 03-20-2007, 10:44 PM
 
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I'm sorry.
Oh, gee, it could be so many things. Lyme disease, amalgam fillings (mercury poisoning), other heavy metal poisoning, aspartame poisoning... It could also be the cocktail of meds you were most likely put on after your accident. The list goes on. You may want to find a holistic or naturopathic doctor that can take your full history and examine you for signs to see what's wrong. Muscle testing may help too. It sounds hokey, but if you can find a good practioner to do it, they can really pinpoint the problem.
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#3 of 35 Old 03-21-2007, 01:13 AM - Thread Starter
 
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Actually, my chiropractor already did muscle testing. He said it came up positive for wheat, gluten, tomatoes, corn, parasites, and has told me in the past that I have heavy metal in my system.

I was surprised when my allergy test results came back negative because of the things he said.

I only have the white fillings in my teeth. I had all the metal ones removed and replaced with the white ones a few years ago. I don't know if the white ones can cause problems or not?

I don't eat artificial sweeteners. I react badly to them.

: Robyn : Increasingly crunchy Mama to Kya (8) , Makena (7) , and Keegan (4) :
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#4 of 35 Old 03-21-2007, 01:34 AM
 
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Did you have a head injury in the accident? Concussions (brain damage) often go undiagnosed.
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#5 of 35 Old 03-21-2007, 01:38 AM
 
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Have you looked into nutrient defiences? These were causing me some big problems. I had a practioner help me figure them out and then take the correct amounts of supplements along with a traditonal foods diet.

Jen

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#6 of 35 Old 03-21-2007, 01:42 AM
 
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Originally Posted by newcastlemama View Post
Have you looked into nutrient defiences? These were causing me some big problems. I had a practioner help me figure them out and then take the correct amounts of supplements along with a traditonal foods diet.

Jen
Sorry, I guess I'm derailing somewhat, but there's a chance the OP wants to know, too: what kind of practitioner can help diagnose nutritional deficits? Holistic?

Thanks!
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#7 of 35 Old 03-21-2007, 01:47 AM
 
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I went to Recovery Systems in the SF bay area, CA. Julia Ross, who wrote The Mood Cure, runs it. The main help I got was from a nutritionist with a masters degree. Probably natropaths, chiropractors and the like would be able to help.

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#8 of 35 Old 03-21-2007, 09:07 AM
 
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I think that a lot of good suggestions have been posted.

I did want to add that make sure you actually KNOW what your blood tests say and do research on values and meanings. My symptoms were similar -

"Tired, achey/weak, lethargic, sometimes dizzy and just a general "hazey" feeling. I have a headache DAILY."... just add constant constipation and always cold feet and hands...

I actually am now on thyroid medication after finally doing just that. I discovered I was in this "normal" range per lab values but outside the "new" accepted values and did some serious endocrinologist shopping til I found someone who both saw a lot of people in my condition as well as was very familiar with the new studies/research.

Can't believe the difference a very small amount of levoxyl has had on my overall health -- both physical and mental.

I know the frustrating part about all of this -- you have to be your own advocate!!!! Generally, I've had much better luck with holistic doctors actually giving me better health advice than normal doctors...

about.com has some excellent info on thyroid disease if you need to research/compare your blood test results.
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#9 of 35 Old 03-21-2007, 10:30 AM
 
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Originally Posted by KMK_Mama View Post
I have felt like crap for a long time now. Tired, achey/weak, lethargic, sometimes dizzy and just a general "hazey" feeling. I have a headache DAILY. Never goes away. I have had the headache for about a year. No pain relievers help. I wanted also mention that I have the bladder disease Interstitial Cystitis and I was in a bad car accident about 3 years ago and had my spleen out. Don't know if those matter.

Anyhow, I went to the Doc a few weeks ago and they took some blood and checked my hormone levels, my thyroid, etc. ALL NORMAL.

I went again to get tested for Celiacs Disease (the entire panel) and they also did an allergy panel of the most common food allergies. ALL NORMAL.

Now what? What would you do? I'm so frustrated. I just want to feel better.

Parasite?
Yeast?
Hi. I have IC as well. I so understand and relate to what you are going though.

It is rough and I am having a hard time as well lately.

IC is different for a lot of people so I have a lot of questions.

They also tested me for celiacs but for an actual absolute "negative" it requires a colonoscopy and biopsies of colon. Allergy testing is not definative for celiacs. I had a colonoscopy about a year ago and it was negative.

Some IC patients have Hoshimotos Thyroiditis. To actually test for Hoshimotos it requires a test for Thyroid antibodies and generally entails a Thyroid specialist. I say this as my mother struggled with Thyroid issues for about 30 years before being diagnosed by a specialist.

A lot of IC patients have IBS.

Some IC patients do have yeast issues and get some relief of symptoms from treating yeast issues. It is something I tried. It didn't work for me but it might for you.

So..how is your gut? How are you eating? IC can be autoimmune so are you around sick people a lot? Do you work with public?

What meds are you taking? What meds have you tried? I have tried most of the meds they use for IC so can give my expriences with those.

Most important...how are you sleeping? Are you waking up at night a lot? The thing my IC affects the most is sleep and it has a HUGE and very detrimental impact on my sleep.

Other than the haziness how are your IC symptoms doing?

What affects your IC the most? Have you tried IC elmination diet? Are you missing vitamins due to some food being eliminated? I would wonder about vitamin C as I have a hard time getting C as oranges bother me as well as vitamins (even buffered and all that jazz..I can't take vitamins)


It is so hard and I know how rough IC can be on you, just trying to get vitamins while avoiding trigger foods is difficult.




I would recommend checking out the IC Network website. There are message boards and a lot of articles. A lot of Drs do not understand or know a lot about IC.

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#10 of 35 Old 03-21-2007, 11:37 AM
 
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I feel like that when my environmental allergies are acting up.

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#11 of 35 Old 03-21-2007, 07:39 PM - Thread Starter
 
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Originally Posted by abimommy View Post
Hi. I have IC as well. I so understand and relate to what you are going though.

It is rough and I am having a hard time as well lately.

IC is different for a lot of people so I have a lot of questions.

They also tested me for celiacs but for an actual absolute "negative" it requires a colonoscopy and biopsies of colon. Allergy testing is not definative for celiacs. I had a colonoscopy about a year ago and it was negative.

Some IC patients have Hoshimotos Thyroiditis. To actually test for Hoshimotos it requires a test for Thyroid antibodies and generally entails a Thyroid specialist. I say this as my mother struggled with Thyroid issues for about 30 years before being diagnosed by a specialist.

A lot of IC patients have IBS.

Some IC patients do have yeast issues and get some relief of symptoms from treating yeast issues. It is something I tried. It didn't work for me but it might for you.

So..how is your gut? How are you eating? IC can be autoimmune so are you around sick people a lot? Do you work with public?

What meds are you taking? What meds have you tried? I have tried most of the meds they use for IC so can give my expriences with those.

Most important...how are you sleeping? Are you waking up at night a lot? The thing my IC affects the most is sleep and it has a HUGE and very detrimental impact on my sleep.

Other than the haziness how are your IC symptoms doing?

What affects your IC the most? Have you tried IC elmination diet? Are you missing vitamins due to some food being eliminated? I would wonder about vitamin C as I have a hard time getting C as oranges bother me as well as vitamins (even buffered and all that jazz..I can't take vitamins)


It is so hard and I know how rough IC can be on you, just trying to get vitamins while avoiding trigger foods is difficult.




I would recommend checking out the IC Network website. There are message boards and a lot of articles. A lot of Drs do not understand or know a lot about IC.
OK.....I'm going to answer these questions and maybe I'll get some more great advice!

The car accident was 3 1/2 years ago. I'll give a quick run-down. My 2nd baby was just 10 days old so I had just given birth.....The lady ran a red light and hit me on the drivers door going between 55-60 mph. I am lucky to be alive. My right wrist broke, my spleen ruptured, I had liver damage, glass imbedded in my scalp, bruises everywhere, etc. I was in ICU for 3 days and then moved and stayed another 2 days. Of course while in the hospital I was on antibiotics, morphine, and before I left they gave me the flu shot, tetanus, and the one for pneumonia/meningitis. I went home, got a fever of 104 that night and it landed me in the hospital for another week. More antibiotics, and they found a blood clot in my liver so they put me on blood thinners. Amazingly enough, they never did an x-ray or cat scan of my head. I was on Vicodin for months after the accident as well as blood thinners for about 2 months as well.

I got pregnant with Keegan about 2 years later and with him and all my children I had antibiotics due to group B strep. The headache started around the time he was born....when he was about a week old. We got thrush...in his mouth, on my nipples.

I have tried quite a few meds for my IC, but am currently not taking anything. I tried Elmiron, bladder installations, and Hydroxizine (Vistaril) which just made me VERY tired to where I couldn't even keep my eyes open during the day. They put me on anti-depressants about 2 years ago because they thought depression was causing my symptoms, but they didn't so anything except make me gain about 30 pounds so I quit taking them. I have never tried an elimination diet and I eat like crap. I have been trying really hard though!

I also cannot take vitamins because they make my bladder pain unbearable. I can take liquid vitamins though or chewables but I don't on a regular basis.

I sleep horribly. We co-sleep with the baby who still gets up about 2-3X a night to eat and then I am up going to the bathroom on average 6-10X a night. Sometimes less, sometimes WAY more.

I went to Sprouts today and talked to a very knowledgeble lady there and I am starting a Candida cleanse. I got some digestive enzymes, some Caprylic acid with some other stuff in it (garlic, calcium, mag, etc) and some Bentonite. I am going to start a lean meat, veggie diet with lots of water. I don't know HOW I am going to live without dairy, fruit, sugar, and most of all my Coke, but I'm going to try if it makes me feel better. :

Thanks so much of you are still reading. Any help would be greatly appreciated!

: Robyn : Increasingly crunchy Mama to Kya (8) , Makena (7) , and Keegan (4) :
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#12 of 35 Old 03-21-2007, 07:41 PM - Thread Starter
 
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Oh yeah, I have to go on antibiotics ANY time I get a fever above 99 because my immune system due to not having a spleen and I also have to pre-med anytime I go to the dentist.

I am scheduled for a cat scan on the 29th for my brain, so we'll see what it says.

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#14 of 35 Old 03-22-2007, 05:37 PM
 
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She has an illness which affects sleep. IC is an autoimmune disorder that causes bladder pain and frequent urination and it makes you wake at night a lot.

Looking at yeast is a good idea IMO. I tend to prefer to try the LEAST invasive methods first and a lot of people have gotten relief from yeast treatments.

I would also look at pelvic floor therapy or getting that checked. Some IC patients get relief from that.

I can't do bladder instills, they bother my symptoms.

I take hydroxyzine and have been on it for awhile.

Elmiron didn't work for me, I took it for two years.

Your Dr might suggest Elavil, it helps some people but made me hallucinate (er..that wasn't good ) You are BF so I would say "absolutely not!!" to that one.

Your Drs might mention Neurontin for pain. IMO that med is evil. Don't take! Especially while BF.

They give anti-depressants to IC patients a LOT because anti-depressants help with nerve pain. The pain associated with IC is nerve pain and they do help some people with thier symptoms. They tried several anti-depressants on me and some made me very ill. I lost 25 lbs on zoloft because it made me puke (not cool)

Another reason they give anti-depressants to IC patients as chronic pain can make you depressed. It can be hard to cope.

Wellbutrin is not supposed to make you gain weight, it is used for OCD and smoking cessation. I did gain weight on Wellbutrin but it was the weight I needed to get back after puking my guts out on zoloft.

I started on wellbutrin at the same time as the hydroxyzine. The hydroxyzine would put me to sleep at night and the wellbutrin would wake me up in the morning.

This might freak people out who prefer natural methods but I cannot stress the severity of my illness at the time.

I did eventually stop taking the wellbutrin and my body is much more used to the hydroxyzine so it doesn't make me as groggy in the AM.

As far as diet, the things that bother my symptoms the MOST are nitrates and preservatives, MSG, oranges, vitamins (which is annoying), soda, coffee, dairy (apparently I have a dairy allergy)

DO NOT TAKE, DRINK OR EAT CRANBERRY! It will jack you all up!

I am glad you are trying the yeast diet and I really hope it helps. Cutting down on those things should help you. I do recommend some soy yogurt I cannot have dairy but soy yogurt is delicious, I love it! The IC diet is good for finding what your triggers are. You can slowly add things back into your diet but it is good to know what bothers you and what dooes.

Once you get a hang of diet try coconut milk as milk substitution in cooking. Chanley told me to use it instead of heavy cream and it works GREAT! I use it in sauces and all sorts of things.

IMO, the haziness is due to sleep deprivation and vitamin defiences, those can also be causing your headaches. Eat more green stuff. Eat a TON of green stuff. Eat more red bell peppers. They are high in c and might not bother your IC like citrises can.

The IC Network site has several IC friendly recipes but they may not all be in line with yeast diet.

Eat brazil nuts, eat one *every day* I eat them and I don't even like them. Brazil nuts are a natural source of selenium which is good for your immune system. I don't remember if they are on yeast diet or not but if they are, eat them anyways.

One a day won't mess up yeast diet that much and you REALLY need help with your immune system.

IC patients need to get a lot of their vitamins from food as many cannot take vitamins due to the citric acid in them. You might try the extra special buffered kind which is supposed to be gentle on your system but they jacked me up so they may not work for you either.

Here is list of foods for yeast diet

http://www.mwilliamson.com/yeastdiet.htm

How bad is your pain right now? See if they would be willing to perscribe you a TENS unit. I went through quite a run around getting one but after all that annoyance it helps.

I have been where you are and it is a BAD PLACE!

Take extra care of yourself mama. If you need help coping do not hesitate to get a therapist. PM me anytime. Cerridwen also has IC and I will let her know about this thread.


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#15 of 35 Old 03-23-2007, 12:55 PM
 
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Hi, Makena:

It seems like you have gotten some good advice, but I wanted to add another suggestion. You might consider going to a headache clinic to stop your daily headaches. A good headache clinic will take a look at everything: your sleep, allergies, total health, nutrition, stress, other medications and illnesses, etc. It also will be more up-to-date on headaches than most practitioners and usually will have a better understanding on how disruptive headaches can be. A daily headache is an indication that something is wrong. It's also a terrible way to live. I hope you can get some relief soon.
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#16 of 35 Old 03-24-2007, 05:01 PM
 
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this thread. I am a long time ic patient. IC can cause migraine disorder. I scrolled through but didn't see if they finally did a cat scan or mri on your head?
Some people have luck getting rid of acidic foods.
Also be careful of cleanses. While they are great for many things they are not recommended for people with bladder or kidney issues.
Some good herbs for IC are kidneyblend6, cornsilk,uva ursi and true blueberry capsules. Is your IC dr a gyno-uro? if not find one. I cannot urge this enough. They are a specialized specialist.
Try the Elmiron again maybe after your elimination diet -If it was just a case of not working well.
Or there is a new med out called enablex. I use it along with Elmiron. ;
For an anti depressant with IC it is usually better to have one of the older tricyclic ones like pamelor.
Yes you need to give up your coke. Now and then try a caffeine free. Caffeine and IC do not get along.
You do need to see a neurologist to rule out anything that might have been missed from your wreck. If possible find one who also specializes in migraines, so both bases are covered.

I have morphine and atarax (hydroxizine) for flares. Do you have a flare regimen?
I also sometimes have to self cath. You can ask for lidocaine jets, ointment or gel. I have the ointment and gel.
Have you had the pelvic floor therapy biofeedback?
I had that and as a result have the medtronic interstim (you can google it) I was so bad before it I could NOT leave my house. It is not for everyone though.
I hope some of this helps
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#17 of 35 Old 03-24-2007, 05:04 PM
 
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you that IC can cause CFIDS, fibromyalgia and many other autoimmune problems.
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#18 of 35 Old 03-25-2007, 02:45 AM
 
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Perhaps fibromyalgia?

Dealing with Fibromyalgia - The Wise Woman Way
http://ezinearticles.com/?Dealing-wi...-Way&id=119447

National Fibromyalgia Association
http://fmaware.org/

Hope you feel better soon! s
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#19 of 35 Old 03-25-2007, 12:00 PM - Thread Starter
 
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Quote:
Originally Posted by CerridwenLorelei View Post
this thread. I am a long time ic patient. IC can cause migraine disorder. I scrolled through but didn't see if they finally did a cat scan or mri on your head?
Some people have luck getting rid of acidic foods.
Also be careful of cleanses. While they are great for many things they are not recommended for people with bladder or kidney issues.
Some good herbs for IC are kidneyblend6, cornsilk,uva ursi and true blueberry capsules. Is your IC dr a gyno-uro? if not find one. I cannot urge this enough. They are a specialized specialist.
Try the Elmiron again maybe after your elimination diet -If it was just a case of not working well.
Or there is a new med out called enablex. I use it along with Elmiron. ;
For an anti depressant with IC it is usually better to have one of the older tricyclic ones like pamelor.
Yes you need to give up your coke. Now and then try a caffeine free. Caffeine and IC do not get along.
You do need to see a neurologist to rule out anything that might have been missed from your wreck. If possible find one who also specializes in migraines, so both bases are covered.

I have morphine and atarax (hydroxizine) for flares. Do you have a flare regimen?
I also sometimes have to self cath. You can ask for lidocaine jets, ointment or gel. I have the ointment and gel.
Have you had the pelvic floor therapy biofeedback?
I had that and as a result have the medtronic interstim (you can google it) I was so bad before it I could NOT leave my house. It is not for everyone though.
I hope some of this helps
I am having a cat scan on the 29th.
My IC Dr is a Uro but honestly nothing she ever did helped so I haven't been to see her in a pretty long time.....about 2-3 years. I have been either pregnant or breastfeeding so I could never take meds. I have nothing, no meds for flares. I never go into "Remission," but I got to the chiropractor and when it's bad he seems to help. My L5 in my low back is always out when it's bad and when he fixes that things get a bit better.
I have never had pelvic floor therapy or anything like that either.

Thanks, I will look up the other conditions. I am planning on starting a Candida cleanse soon and I am worried that the meds will be bad because they have Vitamin C in them which is BAD BAD BAD for my bladder. We'll see.

Thanks!

: Robyn : Increasingly crunchy Mama to Kya (8) , Makena (7) , and Keegan (4) :
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#20 of 35 Old 03-28-2007, 10:54 PM
 
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dr is a uro. Here is the thing is she just a urologist? A gyno -uro is NOT the same as a uro. IC patients really need a gyno-uro if there is one in the area.
don't get me wrong there are a few regular uros out there that deal with ic. But they are few and far between
Since you say she has not helped much, finding a gyno-uro won't hurt anything
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#21 of 35 Old 03-29-2007, 08:46 AM
 
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I don't have IC, but I have an 18 month old who sleeps like a newborn. I think most newborns actually sleep better at night than he does. He wakes up every 30-60 minutes, 2 hours if I'm lucky.

I just went and saw a doc on Tues b/c I was sure my thyroid was messed up. My mom and sister take synthroid, probably Hashimoto's, I never asked. THe doc looked at my thyroid antibodies, as well as other thyroid levels, did a CBC. Everything came back perfectly average, no thyroid antibodies, nothing wrong with me at all, except my cholesterol is 280, yawn (I've ALWAYS had high cholesterol.)

She told me to take melatonin and magnesium every night before bed to see if I can get more sleep that way (I have a hard time falling asleep even though I never get enough b/c of Liam.) SHe told me I'm exhausted all the time b/c I am literally exhausted. I have 3 young kids, 2 with special needs, my dh is a grad student who is never home, and I have no family nearby to help me ever. Duh, of course I'm exhausted. She wants me to come back if the melatonin and magnesium don't help.

If you can take melatonin and magnesium, it might be worth a try. I slept like a brick last night and barely remember nursing ds, although I know I did SEVERAL times. lol.

This was a regular MD, btw. A family practitioner who works at the campus clinic. Pretty cool that she recommended natural stuff first.
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#22 of 35 Old 03-30-2007, 12:26 PM
 
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The blood tests for celiac are notoriously inaccurate. So inaccurate it would be laughable if it weren't so sad at the number of people who are misdiagnosed and told they dont' have it when they're actually in the early stages of the disease. We also suspected my thyroid for a long time until my celiac results came back positive. I went off of gluten and my whole world changed in less than two weeks.

Enterolab can test you- www.enterolab.com without a doctor's order. Also, if you can't afford the testing, how about trying a gluten free diet to see if you improve? Give it an '8 weeks gluten free even in tace amounts' try and you might be shocked at how much better you feel.

I've seen elsewhere people mention a connection between IC and Celiac. You might want to search celiac.com to see if you can turn up anything on it.

Also, don't be surprised that the chiropractor and allergest allergy test results were different- they're testing for different types of allergies- IgG vs IgE. I would recommend as a minimum that you eliminate everything that you tested positive to, to asist in figuring out what your true allergies are. Allergy testing is only a starting point in figuring out your food allergies.

If you need help with going GF, I can help you. I highly recommend it as a starting point in figuring out your problems.

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#23 of 35 Old 03-30-2007, 03:14 PM
 
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If you think you may have had a head injury in the accident and then were on blood thinners for a while, an injury may have been made worse by that. Perhaps an old injury was re-injured during childbirth due to increased intracranial pressure related to pushing. If you have frequent headaches at least get a CT or MRI to rule out major problems. Aneurisms can be clipped if caught early.
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#24 of 35 Old 03-30-2007, 04:31 PM
 
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What procedure was followed when your fillings were removed? How many? If not safely (IAOMT protocol) you were exposed to a lot of mercury that is now stored in your body organs. That could be significant. Have you considered chelation?

I had IC for several years including pg, it was horrible.

My theory is that IC is caused by endotoxins excreted in the urine based on my experience. When I had thrush while bf'ing my IC and IBS flared at same time. Raw milk kefir and high vitamin cod liver oil (and probably no sugar traditional foods diet) put it into remission.

Yeast/bacteria imbalance in the gut creates endotoxins (and exotoxins when they die, be careful on a "yeast killing" regimen.) I never had an OAT test, Organic Acids Urine Test, but that would detect endotoxins from yeast/bacteria.

Your being on constant antibiotics has bombed your immune system and gut flora. And I think is continuing the vicious cycle of IC. I would sincerely research the heck out of the spleen issue from a nutritional and alternative standpoint ... prophylactic antibiotics make no sense for real immune system support. Sadly modern medicine doesn't know how to support immune system so they just discount the possibility.

If your digestion is poor, you are not absorbing your nutrients, the digestive enzymes should help... which ones are you trying? I also took them in between meals to help finally solve all my issues. I don't think you have to have food allergies necessarily to have gut problems. Although I think IBS/leaky gut can cause the immune system to react in allergies if you have it long enough.

I found out recently I also have a thyroid issue which effects digestion
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#25 of 35 Old 03-30-2007, 07:06 PM - Thread Starter
 
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I don't know what they did when they switched out my fillings and I actually don't remember how many. I just know that when my Mom could afford to have them switched from silver to white, the dentist took them out and put white ones in instead. I think maybe 3? I don't know anything about chelation, but I will look it up, thanks for the suggestion!

I was actually thinking of starting a Candida cleanse. I bought everything already even. I was worried about the vitamin C in it, but didn't even think about the yeast dying off and it's effects on my bladder! Oh no!

My plan now is to do the candida cleanse, then a parasite cleanse, and I will also look into chelation.

The digestive enzymes I bought are Candidase. They have both Cellulase and Protease in them. They are the ones the saleperson at Sprouts recommended do to with the candida cleanse, but I haven't started using them yet.

I was also thinking of starting a liquid vitamin, mineral supp but the salesperson said that even the most minute amounts of sugar can hurt the process so she said NOT to do a vitamin right now, because the liquid one I wanted had 3g of sugar per serving.

I don't generally have digestion issues. It's more the headache, tiredness, and achiness that are making me feel terrible.

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#26 of 35 Old 03-30-2007, 11:30 PM
 
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I'm not sure about your IC condition. But, the symptoms you describe sound like those I had when diagnosed with Epstein Barr - chronic fatigue. It is actually a form of chronic mononucleosis. So, you would test + for mono if they did a mono spot test. You carry a dormant form of the mono that causes you to have these symptoms, but no full fledged nasty mono. I'd definitely get a mono spot test. It's just a finger prick, and could rule that out at least.

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#27 of 35 Old 04-02-2007, 04:07 AM - Thread Starter
 
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Originally Posted by eastkygal View Post
I'm not sure about your IC condition. But, the symptoms you describe sound like those I had when diagnosed with Epstein Barr - chronic fatigue. It is actually a form of chronic mononucleosis. So, you would test + for mono if they did a mono spot test. You carry a dormant form of the mono that causes you to have these symptoms, but no full fledged nasty mono. I'd definitely get a mono spot test. It's just a finger prick, and could rule that out at least.
What do you do for this? Is it curable?

I actually HAVE had Mono as a teenager...

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#28 of 35 Old 04-03-2007, 09:54 AM
 
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Quote:
Originally Posted by eastkygal View Post
I'm not sure about your IC condition. But, the symptoms you describe sound like those I had when diagnosed with Epstein Barr - chronic fatigue. It is actually a form of chronic mononucleosis. So, you would test + for mono if they did a mono spot test. You carry a dormant form of the mono that causes you to have these symptoms, but no full fledged nasty mono. I'd definitely get a mono spot test. It's just a finger prick, and could rule that out at least.
This is along the lines I was thinking also. Chronic fatigue has poor adrenal function as a component. This would explain the exhaustion, weakness, headaches, and dizziness. Especially if your blood pressure tends to be low, I would do some reading about adrenal fatigue to see if that could be what's going on. It's terribly underdiagnosed because the AMA basically believes your adrenals function perfectly until they completely give out (Addison's disease). Doesn't even make common sense but that's why drs sometimes don't investigate the adrenals thoroughly.
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#29 of 35 Old 04-05-2007, 04:21 AM
 
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i am reading threads late at night and came across yours....

did you get a cat scan? you said the 29th so i assume you meant last month?
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#30 of 35 Old 04-05-2007, 08:54 AM
 
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As a self proclaimed "expert" on Celiac Disease...
1)make sure you had an entire panel done through Prometheus Labs, including the gene indicators
2)follow up with the biopsy of the small intestine
3)and note that just b/c your test were negative, does not mean you don't have CD.
The biopsy detection rate is 33% in absence of total villi atrophy, the TTG test rate is 29% in absense of total vilii atrophy and 4% of all Celiacs do not have either gene DQ2 DQ8. It's faulty science and totally frustrating.
IMO and IME the best test for Celiac Disease is a trial of the GF diet, no cheating. The problem with that is so many are undiagnosed for so long that now there are those who are Celiac, but do not respond to the diet (from the latest pub med study publishing).

Also, note that Allergy testing in the traditional medical way looks for an IgE reaction (this would be hives, asthma, anaphylactic shock). "Allergy" testing by a Chiropractor would be looking more for an intolerance, not necessarily an allergy. Food intolerances are not widely recognized yet by the medical profession, ie MDs. You can have a Gluten Intolerance without having Celiac Disease. Food & Chemical intolerances are really interesting in what symptoms they present. I would avoid the foods the Chiropractor told you to.

I thought my Thyroid was to blame for my most recent ailments of so tired, etc. The doc did a basic thyroid panel and a CBC. Turns out I am Anemic, very anemic and the whole lot of CBC test were abnormal one way or the other in compensation. My Thyroid test were also low.

What I've learned is I need to find a doc who will run a Ferritin test, and the Free t3 and Free t4 test to get more accurate information pertaining to my test results. And even then the science is nearly as faulty pertaining to Thyroid as it is to CD.

Since you stated IC is an auto-immune disorder. A test for the Thyroid antibodies (there are 2 ANTI-TPO & TgAb) would be something I would ask for. And if you didn't have the Celiac Panel done from Prometheus, ask for that specifically with the gene indicator. The gene indicator is actually linked to Hashi's, type I diabetes, and a bunch of other auto-immune disorders.

And the most lovely part in all of this is -- they have yet to have a reason or a cause for Celiac Disease. They know what it does, they think there is a "trigger" in life, but that does not explain my infants being born with the Celiac Affliction!

I hope you find docs that help you feel better soon.
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