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Omg...i Might Be On To Something


Rachel--24

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AndreaB Contributor
Ok so the other day when i went for my foot bath i paid for 6 up front which was pricey but ende up saving money then i got home and looked up this one i had thought of ordering - And it cost less then the 6 appts!!!!!!!! I was so mad. So I called yesturday to see if they had already cashed the check and they haden't so I asked them not to and i went ahead and orederd one. Its not a super high tech one but i don't think i really need a super high tech one.

Why does the price difference not surprise me.

Glad to hear your DMPS went better yesterday without the vit C.


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confusedks Enthusiast

So...I got the blood work! I will post the ones that are out of range...feel free to shed some light!

Chemistry

Chloride 115 (98-114)

SGPT 8 (10-60)

Total Bilirubin 1.6 (<1.4)

Anemia Studies

Ferritin 4.3 (6-600)

Lipid Studies

Cholesterol 234 (<200)

HDL Cholesterol 69 (35-60)

Triglycerides 146 (10-140)

Direct LDL 152 (0-130)

VLDL (Calc.) 29 (<22)

Serology

ABO Group- Group A

PRH Type- Positive

So I don't see anywhere on here that indicates anything about Lyme. My cholesterol is ridiculous! I am not too surprised because my family has a history (even with diet and exercise, everyone is on meds). Also, my ferritin is REALLY low, so I am not too surprised I am so FREAKIN' tired!!! My thyroid for TSH is 0.50 and the range is .34-5.60. So that makes some sense too, it's not our of range, but that may be a little bit of what's going on.

Any comments, etc. would be great since I value all of your opinions so much!

Kassandra

CarlaB Enthusiast

None of those tests were for Lyme ...

Your ferratin is very low!! :o No wonder you're so tired!

confusedks Enthusiast

My ferritin is high compared to what it used to be. It was less than 0 before I was gluten-free. But apparently I am still really anemic. The strange thing is that my Hemoglobin is fine. It's 14.4 (range is 12-18).

I also didn't post the whole thing...I will later when I finish writing my paper. Do you know what I should look for? Would it be called Western Blot with a diff. lab?

Kassandra

CarlaB Enthusiast

Yes, Western Blot. It will have IgG and IgM "bands".

CarlaB Enthusiast

Kassandra, I found this website that had info about low ferritin and normal hemoglobin ... how's your thyroid?

Open Original Shared Link

Flor Apprentice

Kassandra,

I'm no doctor, but I thought I'd add my two cents about your cholesterol, if the doc hasn't already said anything.

The total number is no longer seen as being as important as the ratio between your good and bad cholesterol.

From the AHA:

"An HDL cholesterol of 60 mg/dL or higher gives some protection against heart disease."

Here's the site that explains more about this: Open Original Shared Link

So all your cholesterol levels are a bit high, but the fact that the HDL is high is actually a good thing.


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confusedks Enthusiast

Thank you for the link. My thyroid:

TSH 0.50 (0.34-5.60)

T3 Uptake 34.8 (32.48.4)

Total T4 8.11 (4.50-14.00)

FTI 7.06 (4.90-13.13)

The only one that is a little low is the TSH. I am not an expert by any means on thyroid. I think thyroid problems fit my symptoms. Not to say that is the bottom of all of this. I don't get WHY I am anemic again. I'm gluten-free...what is the cause for the ridiculously low ferritin? There has to be a reason. Lyme?

I don't see anything on the labwork that talks about Lyme or anything you mentioned, Carla. I am thinking maybe it is on a different paper from the labs and we didn't get a copy.

Kassandra

Clark Bent as Stupor-Man Contributor
I had not heard that about flax oil, do you have a link? I always showed up allergic to it and wondered why, so it's interesting to hear that many others don't do well with it.

a couple links from lyme net:

Open Original Shared Link

Open Original Shared Link

though I just ended up buying another spectrum flax oil anyway, when I've taken it in the past I think I've been fine with it and maybe got a slight boost in my overall feeling... though I've never taken it regularly...

ughh.. got caught with the lame advertisement block... just delete one of the m's in the "lymmenet" part of the urls

CarlaB Enthusiast

Kassandra, my thryoid tested out low normal like yours did so my LLMD did another test for the T4 Free, T3 Free, T3 Uptake, and T3 Reverse. The T4 Free and T3 Free were low normal. He started me on Armour Thyroid and I have felt somewhat less fatigued, though it's only been a week.

You might bring up the connection between low thyroid and low ferritin to your doctor (maybe he hasn't thought of it) ... if you have Lyme, it could be causing this.

Did your ferritin levels ever build up to a normal range? It could be that you just haven't stored enough iron yet.

How are your basal temperatures (temp first thing in the morning)?

confusedks Enthusiast

Carla,

Well, my ferritin was less than zero in March. Then I had iron IV's and ferritin went up to 130. Then 6 weeks later it was down to 40, but that is when I went on a gluten-free diet. My iron saturation was also very low, but on a gluten-free diet, it tripled-went from 10 to 28 in a couple weeks! This was after the IV's. My doctor was fine with the fact that they were at 40, even though he initially told me I would START to feel better when they were at 50. So it made no sense to me. We are seeing a different Dr. because we need another opinion. It is just so puzzling to me!

Kassandra

CarlaB Enthusiast

Kassandra, well, it sounds like whatever is *causing* the low ferritin levels is still there. So far, your new doctor sounds helpful. :)

I really think all this is tied togther ... that there's something underlying it all ... if not Lyme, then something else.

AndreaB Contributor
Kassandra, well, it sounds like whatever is *causing* the low ferritin levels is still there. So far, your new doctor sounds helpful. :)

I really think all this is tied togther ... that there's something underlying it all ... if not Lyme, then something else.

I have to agree with Carla on this.

mftnchn Explorer
At least you guys are all on the same continent! ;) I guess that makes me the UK ambassador to Rachelville :lol:

LOL, I wonder what I am? Anyway, it is nice to have friends around the world.

I give up.

I ate no new foods last night. All old "ok" foods and at 1 in the morning was awoken with sharp intense chest pain (7/10). It burned so badly. A third of a bottle of pepto later, it started to quiet.

I spent a good hour on the bathroom floor wishing I could puke it up.

The last time I ate was at 8:30pm.

What gives?

Just a thought, it might not be what you just ate, maybe look back at your records for 4 days and see if anything stands out.

Sure hope you are better soon. Sounds like you have put a lot of energy into your health without much to show for it. And I have been there too! It is hard, hang in there.

Thank you for the link. My thyroid:

TSH 0.50 (0.34-5.60)

T3 Uptake 34.8 (32.48.4)

Total T4 8.11 (4.50-14.00)

FTI 7.06 (4.90-13.13)

The only one that is a little low is the TSH. I am not an expert by any means on thyroid. I think thyroid problems fit my symptoms. Not to say that is the bottom of all of this. I don't get WHY I am anemic again. I'm gluten-free...what is the cause for the ridiculously low ferritin? There has to be a reason. Lyme?

I don't see anything on the labwork that talks about Lyme or anything you mentioned, Carla. I am thinking maybe it is on a different paper from the labs and we didn't get a copy.

Kassandra

Kassandra, thyroid levels are very complex to interpret from what I understand. But what I got from my doctors is that besides the lab levels, symptoms are important. A really important symptom is your basal body temperature. Take you temp every morning when you wake up but before you get up. I forget how long, and it has to be a certain time during your menstrual cycle. Low temps mean you need thyroid. Maybe doing BBTs for awhile will help your doc decide what to treat.

Low thyroid is connected to celiac for sure.

covsooze Enthusiast

Hi Kassandra :)

I agree with what's been said already about thyroid. Blood tests aren't necessarily the best way of figuring out what's going on. Here's a UK site that's great about thyroid:

www.thyroid-disease.org.uk

www.stopthethyroidmadness.com is also really helpful.

(BTW, Dr Peatfield who is mentioned on the UK site is the dr I'm trying to arrange to see :) He's got a great book out on thyroid/ heavy metals/ adrenals etc that's referred to on that website).

Anemia is very complicated and will certainly cause you to feel exhausted. My hemoglobin levels are still low, so I've obviously got issues still going on. There are so many things that can cause it though. Problems with other deficiencies can cause iron-deficient anemia eg zinc (I think that's part of my problem). I haven't researched extensively on this and can't pretend to understand it, but just to highlight that you need a dr that's not just going to give you iron - that treats the symptoms not the cause.

Good luck!

Susie x

PS haven'tm posted 'properly' for a few days, so I haven't said it before, but congrats on getting the 504 sorted :)

covsooze Enthusiast

Mia, good to hear your IV was a bit better without the vit c :) What problems do you (and Rachel) get with vit c? My detox is vit c, plus garlic and milk thistle. It keeps me awake at night and makes my whole digestive system feel terrible :( But it does seem to be working. I've not taken it the past couple of days coz I need sleep. Trying to figure out what part of it is causing the probs and where to go from here.

How's your footbath?

Patti, thinking of you with all your prep for the w/e :)

Jin, where are you? How's the hound? Have you been making any progress taking the magnesium? Thanks for remembering my call to Foresight :) Haven't called them yet as I've been so busy. I'm off work now till next Wednesday (hooray :D ) so will call today.

Susie x

CarlaB Enthusiast
Kassandra, thyroid levels are very complex to interpret from what I understand. But what I got from my doctors is that besides the lab levels, symptoms are important. A really important symptom is your basal body temperature. Take you temp every morning when you wake up but before you get up. I forget how long, and it has to be a certain time during your menstrual cycle. Low temps mean you need thyroid. Maybe doing BBTs for awhile will help your doc decide what to treat.

Low thyroid is connected to celiac for sure.

Since Kassandra is on the pill to help with her cycles, it won't matter what time of month as she shouldn't be ovulating. For those not on hormones, it's after menstruation till about the 14th day of the month and it needs to be first thing in the morning after waking before getting up.

Google Broda Barnes and you will learn a lot about this method. My basal temps are about 97.7, which really isn't to bad. They used to be much worse.

NoGluGirl Contributor

Dear Everyone,

Do not worry, I am just behind on posting! I will have my column on here soon! I have had to make a dental appointment, been doing some research, and suffering with headaches.

That is on top of household activities. Taking care of Dart has also kept us busy. He is doing very well!

Sincerely,

Jin

jerseyangel Proficient
Dear Everyone,

Do not worry, I am just behind on posting! I will have my column on here soon! I have had to make a dental appointment, been doing some research, and suffering with headaches.

That is on top of household activities. Taking care of Dart has also kept us busy. He is doing very well!

Sincerely,

Jin

Thanks for checking in--I noticed you haden't posted lately, and I was getting worried. Sounds like you've been busy--sorry about the headaches :(

Glad to hear Dart is doing well--take care and I hope you feel better soon :)

:D your column :D

Green12 Enthusiast

Wow, lots of scientificness :lol:

I don't have anything to add on thyroid, looks like it's all been covered. But I do second and third the sentiment that blood tests don't always show the entire picture.

Thanks Charlie for those links!

Hey guys, I was thinking that Ami hasn't posted in a really long time, I am hoping everything is ok with her :huh:

NoGluGirl Contributor

Dear Patti,

You are so sweet! :) I thought you guys would be concerned. That is why I posted a mini update! This afternoon my column will be up and running again! I will warn you ahead of time it will be a doozy! :lol:

My headaches probably will not improve until I get this tooth extracted. The oral surgeon cannot get me in until December 13th. I am afraid I have a bad infection. Due to the yeast, going on antibiotics would be problematic. I am not sure what to do. That is on top of desperately trying to get my doctor going on the Lyme testing. :(

I see the eye doctor Tuesday, and will hopefully get my new glasses then. I have to strain all the time to see, even wearing my glasses. The recent typos should have given that away! :lol: Incidentally, this is what I look like trying to see: :blink: in case anyone was wondering. Tuesday may also find me at the hairdresser's getting a sample piece of hair for her to play with.

I am trying so hard to find anything on what is in some of the hair products she needs to use. The trouble is, so far, the Web sites have revealed nothing. So, I posted on the forum and hope someone on here knows about these products! Out of everyone on here, someone is bound to be a hairdresser! Phone numbers are not on many of the packages, either! WTH?

Dart should get to start eating more today. He had to be fed a Tablespoon every two to three hours the past few days. I am nervous about giving him much at once. My aunt thought his stitches looked red. We worry about the stitches inside the most, since he has been hard to stop jumping and going up and down the stairs. Dart is not good at being still, and we could not get him to calm down.

Dear Julie,

I hope Ami is alright, too! She has not been on for some time now! :unsure: Maybe she is just busy. Let's hope that is all. Maybe one of us should PM her or something.

Sincerely,

Jin

P.S. Do not worry everyone else, I have my notes, and have not forgotten any of you! I just need to organize my little outline. There are a lot of things I want to respond to from the last few days!

jerseyangel Proficient

Jin--

I was thinking that your headaches also may be due to your eyes. If you need a new Rx for glasses--especially if your sight is significantly different in both eyes, it can cause headaches. This happened to my younger son.

melmak5 Contributor

Jin - it also may take a few days for your eyes to adjust (which can cause headaches) to your new glasses, because they have been working so hard to compensate. So if your headaches don't go away right away the new glasses, don't be discouraged.

AndreaB Contributor
Dear Everyone,

Do not worry, I am just behind on posting! I will have my column on here soon! I have had to make a dental appointment, been doing some research, and suffering with headaches.

That is on top of household activities. Taking care of Dart has also kept us busy. He is doing very well!

Thanks for the update. Sounds like you've been busy. I had thought I'd seen you on reading, but now I don't remember.

:D your column :D

Hey Patti! My kitty is back! :)

Jin--

I was thinking that your headaches also may be due to your eyes. If you need a new Rx for glasses--especially if your sight is significantly different in both eyes, it can cause headaches. This happened to my younger son.

I agree.

Jin - it also may take a few days for your eyes to adjust (which can cause headaches) to your new glasses, because they have been working so hard to compensate. So if your headaches don't go away right away the new glasses, don't be discouraged.

I agree with this too.

AndreaB Contributor

Carla,

Had you said that Bragg's Apple Cider Vinegar was alkalizing? Or was that just the lemon juice that was?

I was reading on a different site where a person had written about adding baking soda to ACV to neutralize it more. I think that made my bladder infection worse again. Otherwise the Oil of Oregano is working better than the ACV. I supposed to take the oil 3x a day and so far have only had it 2x.

Trying to figure out alkalizing which is going to be challenging on our short food budget. Doesn't help that our water is acidic. I'll use a test strip with that when we replace the filters in the next month and see if that makes a difference.

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    • trents
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    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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