Jump to content


What's with the ads?

Photo
- - - - -

Inflammation... what's left to look for?


30 replies to this topic

What's with the ads?

#1 amo_mea_filiis.

amo_mea_filiis.

    Empress Bee

  • Members
  • PipPipPipPip
  • 7021 posts

Posted 13 August 2017 - 08:15 AM

This is the same kiddo from the depression thread.

Not too sure of my point here, just looking for ideas I guess.

Dd was on steroids and antibiotics for 10 days for a sinus infection. (Post meds, she's still stuffy and her ears still have fluid; very unusual for her. Doc is trying to get her in with allergist sooner.)

While on those meds, labs were run for psych med levels, and I asked to include vitamin D (I always ask to throw it on most labs because of location).

Lithium level was fine.

Her TSH was 7, so psych agreed with weaning off lithium, even if the steroids played a role.

Her D was 11 :( . We're now doing about 70k a week, will recheck in a few weeks, and adjust dose. We'd do 50k a week, but no medical professionals are worried about the extra 20k, and it's easier to remember giving daily vs skipping 2 days.

Within 48 hours of stopping the steroids, her joint pain was very obvious, and her knees were a little swollen. Off to the regular doc again. (This isn't new, but was never this obvious!)

Doc ordered ANA, rheumatoid, lupus, basic labs, lyme, and some other tick stuff. So far, most everything has been negative/normal except for whatever shows inflammation, which was expected. We are still waiting for the non Lyme tick panel. If this panel is negative, doc wants to send her to a rheumatologist (we've got allergy, sleep, neurologist, and neuropsychologist scheduled already for various reasons).

We're also doing an elimination diet (top 8, using Whole30 minus fish). We've done it in the past, but not well (ds has always been bad with food), and symptoms were vague which is not easy to track.

In the past dd has had a mix of positive and negative gluten antibody results. Because of a positive, her doc will throw it in when GI stuff flares. Why haven't we eliminated? It's hard to without an absolute yes, and when it doesn't cure vague stuff. We are now cutting it, not sure if it'll be reintroduced. GI ran it, and she was negative.

A lot of dd's vague pain is usually caused by constipation. Even what sometimes seems like period cramps or chest pains! But, what teen wants to live on miralax?! So the cycle is pain to the point of terrified anxiety, confirmation of poo, mega cleanout dose, maintenance dose for a few weeks, then refusals, several months later it starts again.

Oh, 3 nights ago, dd said she thinks the allergy eye drops and nasal spray might be causing some reaction. We stopped, and she says she's ok.

Now I'm all over the place without a point!

Is it possible for environmental allergies to cause joint pain and swelling? What about a food intolerance?

She's overweight, but not obese (she can swim laps, so she's not terribly out of shape). She's bloated. Joint pain. Some joint swelling. Low D. Chronic constipation (I've always thrown this under the common-in-autism umbrella). Possible sleep apnea (also blamed autism for poor sleep). Was having tendinitis in the wrists. PMDD. Asthma. Allergies (only known is dust, for which she carries an epi!).

Add in the psych stuff. Some has always been there, like the anxiety. But some, like the scary stuff possibly looking like bipolar, are new-ish.

What else would a rheumatologist be looking for?

I know dd could have a different diagnosis for everything, and have stand alone psych difficulties. But I'm not going to pretend that I'm not hoping for something like gluten intolerance with psychiatric symptoms and sleep apnea. She's not going to be scoped for celiac because the local GI wants classic symptoms (weight loss, pain after eating, etc).

I was diagnosed with sleep apnea prior to gaining weight. My father snores. My mother was just diagnosed, but is quite large. So we have a family history. Dd has weird dreams similar to mine when I fall asleep without cpap, which is why we're going for a study, even though her fatigue can be from the depression alone. She doesn't tolerate SSRIs.

Her D in February was 40, and she was quite depressed and fatigued. In January her anxiety was off the charts. In April, the psych stuff took primary focus for everyone's safety. In a few weeks, she'll have a combination of family based therapy, dialectical behavior therapy, applied behavior analysis, and behavioral activation (we have some going now, but the combination starts next month. In-home providers are being DBT/ABA/BA trained for overlap).

Am I missing a rock to look under?

I know to keep a binder so each doc can see what other docs say. I'm hoping for communication, but not holding my breath.

#2 amo_mea_filiis.

amo_mea_filiis.

    Empress Bee

  • Members
  • PipPipPipPip
  • 7021 posts

Posted 13 August 2017 - 08:36 AM

We had started keto-ish (under doc's approval), but dd's dairy issues made a comeback (happens when she's sick), and I wasn't prepared for dairy free keto. That's when doc said elim. diet and we switch Tuesday morning.

#3 eagleynne

eagleynne

    Hive Mind Worker Bee

  • Members
  • Pip
  • 62 posts

Posted 13 August 2017 - 09:25 AM

My mom had joint pain and swelling along with constipation and bloating when her gluten sensitivity first flared up. Sleep apnea would explain the snoring and tiredness and could contribute to depression. A Whole30 would probably be a good place to start with diet.

#4 wapiti

wapiti

    Apprentice Bee Keeper

  • Members
  • PipPipPipPipPipPip
  • 11500 posts

Posted 13 August 2017 - 10:10 AM

I would want a few more labs if they haven't already been done, starting with the immune system (IgG total and subclasses, IgM, IgE, IgA, maybe C1 and C4) and more pathogens (HSV, EBV, CMV, and in this case definitely ASO and Anti-DNase B, as strep is known to like joints).

 

Note that steroids can affect bloodwork for some things.  Bloodwork that looks at immune system response to detect a pathogen may be inaccurate if taken while on steroids because steroids depress that response.

 

A study for you:  Improvement of psychiatric symptoms in youth following resolution of sinusitis.

 

See if you can find a sinus specialist (usually an ENT who extra-specializes in sinus stuff).  I would not assume the remaining sinus stuff is necessarily allergy, as opposed to remaining infection.

 

For example, my guy has been on loads of oral antibiotics, and doesn't even have much in the way of sinus symptoms beyond mild postnasal drip, and yet a sinus CT showed some infection hanging out up in the sinuses, where nasal sprays and oral antibiotics often won't reach.  He's now on sinus rinse with a gel antibiotic added, though I'm not seeing any difference - we'll see what ENT says....  I do know someone whose child's neuropsychiatric symptoms improved dramatically after sinus surgery to clean out infection.

 

Sometimes low vitamin D may be a result/symptom rather than a cause.  I would be careful there - if the supplementation makes any symptoms worse, I'd try pulling back to see if that helps.  I've also read that supplementing D can further exhaust magnesium supplies in order to process that.

 

And the gut involvement - harder to manage than one might think.  Good luck!


Edited by wapiti, 13 August 2017 - 10:20 AM.

  • PinkyandtheBrains. likes this

#5 Shelly in IL

Shelly in IL

    Hive Mind Queen Bee

  • Members
  • PipPipPip
  • 2994 posts

Posted 13 August 2017 - 10:12 AM

You might want to joint the Magnesium Advocacy Group on fb. There are some amazing people there who have great answers.
  • wapiti likes this

#6 6wildhorses

6wildhorses

    Developing Child

  • Members
  • Pip
  • 139 posts

Posted 13 August 2017 - 10:37 AM

A few years ago, I had a lot of serious mental health issues and symptoms of inflammation. I cut dairy, sugar, caffeine, gluten, and meat from my diet. I am a new person. Whenever I cheat and have more than a few grams of sugar or more than a bite of dark chocolate, I pay for it, both physically and mentally. It's a tough diet to maintain, but I just remind myself of how terrible I felt until I went on this diet. I also take supplements to help my inflammation, such as astaxanthin, bilberry, and curcumin. I also have adrenal fatigue, and I take Dr. Christopher's formula for that.

You might want to look up the Medical Medium books by Anthony William. He talks a lot about healing ourselves with food. He posts a lot of advice on his Facebook page too.

Edited by 6wildhorses, 13 August 2017 - 11:21 AM.

  • J-rap likes this

#7 6wildhorses

6wildhorses

    Developing Child

  • Members
  • Pip
  • 139 posts

Posted 13 August 2017 - 10:42 AM

Also, probiotics are really good for stomach issues, especially after antibiotics. I use Garden of Life probiotics. My favorite supplement for sinus issues is Kick Ass Sinus.

Also, when I said I avoid sugar, and don't avoid natural sugar in fruit. Fruit has a lot of healing properties.

#8 aaplank

aaplank

    Hive Mind Larvae

  • Members
  • PipPip
  • 482 posts

Posted 13 August 2017 - 10:56 AM

The Autoimmune Protocol might be helpful, especially for inflammation.

https://www.thepaleo...mmune-protocol/

http://autoimmunewellness.com/

#9 amo_mea_filiis.

amo_mea_filiis.

    Empress Bee

  • Members
  • PipPipPipPip
  • 7021 posts

Posted 13 August 2017 - 11:51 AM

I was considering W30's autoimmune list, but wanted to start basic.

She does also take a magnesium, calcium, zinc supplement. Recommended with the D after the labs.

That study is interesting. Her allergies and sinus symptoms are what land her at the dr most often.

Dr is considering pans/pandas, but we didn't see any changes on the round of antibiotics.

Doing W30 as opposed to eliminating just top 8 will also cut the sugar and stuff.

I will watch for any issues as the D comes up, and lithium comes down.

I'm guessing allergist and rheumatologist will be doing a lot of other labs, so I'll make sure we get all covered.

Thanks for all the info!

#10 mom2samlibby

mom2samlibby

    Hive Mind Royal Larvae

  • Members
  • PipPip
  • 1507 posts

Posted 13 August 2017 - 03:19 PM

You might want to joint the Magnesium Advocacy Group on fb. There are some amazing people there who have great answers.

 

I'd be kind of careful on this group.  I've been following it for a week and some of their answers seem kind of odd to me from what I've read about different deficiencies (Vit D, Vit B12).  

 

Are you giving her K2 with the Vitamin D3?  Those two need to go together in order to absorb the D.  http://www.lindsayru...hout-vitamin-k2  She also needs to be on magnesium. This one is easy to help get magnesium into your body.   https://www.amazon.c...WJJVMQQG1Q1T99G

 

Look up magnesium deficiency.  This website has some good information on it about Vitamin D and magnesium deficiency.  http://www.easy-immu...deficiency.html

 

Have you tested her B12, iron, and folate levels?  Those may be low also if she is that low in D. 

 

As her body is starting to get more D in it, her bones may hurt.  This is why:

 

More problematic side effects of vitamin d are bone pain, muscle pain or generalized pain soon after starting to take vitamin d. Those that experience increasing pain become fearful and think that they should stop taking it. But stopping therapy is NOT recommended in the case of increasing pain. In fact, it is likely that you are EXTREMELY vitamin d deficient and have developed bone demineralization from being vitamin d deficient for a very long time and actually need vitamin d more so than the 'average' person.

Read more: http://www.side-effe...l#ixzz4pfVjO75V

 

Hopefully you get her on the right track soon.  


Edited by mom2samlibby, 13 August 2017 - 03:49 PM.


#11 idnib

idnib

    Hive Mind Level 5 Worker: Forager Bee

  • Members
  • PipPipPipPip
  • 5219 posts

Posted 13 August 2017 - 03:28 PM

Agree on making sure she's getting enough K2.

 

Is she getting enough good fats? Many Americans have a 6:3 ratio that's too high and causes inflammation. Is she getting enough olive oil/fish/grassfed butter? Chicken is also fairly high in Omega 6. Here are some ratios for common foods.



#12 amo_mea_filiis.

amo_mea_filiis.

    Empress Bee

  • Members
  • PipPipPipPip
  • 7021 posts

Posted 13 August 2017 - 08:08 PM

We eat chicken a few times a week. I use a lot of olive and coconut oil, and she loves avocado. No grassfed butter because of cost, but I don't use butter too often.
  • idnib likes this

#13 Ellie

Ellie

    Beekeeping Professor

  • Members
  • PipPipPipPipPipPip
  • 31164 posts

Posted 13 August 2017 - 08:13 PM

Her TSH was **7**? Oh my goodness. That's way too high. Did the doctor also order Free T3 and Free T4? FTR, hypothyroidism can cause depression, joint pain, and more.

 

As far as inflammation, have you seen the Autoimmune Protocol? It's first an elimination diet--no dairy, grains, seeds/nuts, nightshades, eggs, some other stuff I cannot remember at the moment. :-) It's more comprehensive than W30. On the Hashimoto's 411 FB group, it's strongly recommended, and many people have been helped by following it.


  • Minerva likes this

#14 amo_mea_filiis.

amo_mea_filiis.

    Empress Bee

  • Members
  • PipPipPipPip
  • 7021 posts

Posted 13 August 2017 - 08:20 PM

Her T's were good. I'm hoping this jump was from the lithium and steroid, and NOT because of thyroid disease. Those levels will be checked again possibly when we recheck D.

#15 amo_mea_filiis.

amo_mea_filiis.

    Empress Bee

  • Members
  • PipPipPipPip
  • 7021 posts

Posted 13 August 2017 - 08:23 PM

We might end up following autoimmune protocol, but I have to take food slower. I can't afford for us to be eating differently, so W30 to start. :)
  • idnib likes this

#16 mom2samlibby

mom2samlibby

    Hive Mind Royal Larvae

  • Members
  • PipPip
  • 1507 posts

Posted 13 August 2017 - 08:30 PM

I'd also look at the side effects of miralax.  That could be causing some of her issues.  http://embracingimpe...ers-of-miralax/



#17 tdbates78

tdbates78

    Hive Mind Level 5 Worker: Forager Bee

  • Members
  • PipPip
  • 362 posts

Posted 13 August 2017 - 08:31 PM

Since she has constipation, any chance she's been tested for SIBO (small intestine bacteria overgrowth)? I have lifelong constipation and after antibiotics for a double ear infection diminished my good gut flora I ended up with SIBO. All the sudden I was bloated all time time, achy, joint pain, fatigue, peripheral neuropathy, food sensitivities and many vit deficiencies among other things. I've been tested for lyme, celiac, RA, AS, MS, Lupus and I dont even remember what else. Everything came back negative except for the SIBO test. The symptoms effect my entire body.

https://draxe.com/sibo-symptoms/

Good luck! Not knowing the answers is extremely frustrating.

Edited by tdbates78, 13 August 2017 - 08:33 PM.


#18 Greta

Greta

    Empress Bee

  • Members
  • PipPipPipPip
  • 6997 posts

Posted 13 August 2017 - 08:40 PM

Has her serum B-12 been tested? It sounds like she's had digestive issues, and that would make it likely that she would have trouble absorbing it. And a deficiency can cause all kinds of problems, including neurological and psychological.

With her D that low I'm surprised they didn't give her a prescription strength supplement. That worked wonders for me. I've read that, oddly enough, the body absorbs more from one weekly megadose than it does from smaller daily doses. So I bought D drops, and I take one big weekly dose with a higher-fat meal, or even with a spoonful of olive oil. And I take magnesium and vitamin K every day because those (I've read) help you absorb it.

#19 amo_mea_filiis.

amo_mea_filiis.

    Empress Bee

  • Members
  • PipPipPipPip
  • 7021 posts

Posted 13 August 2017 - 08:52 PM

I don't know if B's have ever been checked.

They could have prescribed D, but I already have 10,000iu D3 gel caps that I take. So she's getting that daily. I could give her 5-7 once a week, but I read that D can be taken daily, weekly, or even monthly. Daily is easiest to remember.

#20 aaplank

aaplank

    Hive Mind Larvae

  • Members
  • PipPip
  • 482 posts

Posted 13 August 2017 - 10:25 PM

We might end up following autoimmune protocol, but I have to take food slower. I can't afford for us to be eating differently, so W30 to start. :)


I don't mean to beat a dead horse, but I don't think you would spend more money than Whole 30. I find that it's actually more affordable.

#21 Ellie

Ellie

    Beekeeping Professor

  • Members
  • PipPipPipPipPipPip
  • 31164 posts

Posted 13 August 2017 - 11:00 PM

Her T's were good. I'm hoping this jump was from the lithium and steroid, and NOT because of thyroid disease. Those levels will be checked again possibly when we recheck D.

 

But were those *Free* Ts? Because Total T3 and others can be tested, but only the Frees matter. Free T3 should be in the upper fourth of your lab's ranges. Free T4 should be in the upper half. None of the other Ts matter.



#22 Greta

Greta

    Empress Bee

  • Members
  • PipPipPipPip
  • 6997 posts

Posted 13 August 2017 - 11:13 PM

I don't know if B's have ever been checked.

They could have prescribed D, but I already have 10,000iu D3 gel caps that I take. So she's getting that daily. I could give her 5-7 once a week, but I read that D can be taken daily, weekly, or even monthly. Daily is easiest to remember.


Oh, yes, absolutely do what works for you guys! I only thought I'd mention it because my deficiency symptoms came back when I was using daily gel caps. I think the weekly drops are working a little better for me. But maybe I'm just weird. :)

#23 amo_mea_filiis.

amo_mea_filiis.

    Empress Bee

  • Members
  • PipPipPipPip
  • 7021 posts

Posted 14 August 2017 - 04:07 AM

I don't mean to beat a dead horse, but I don't think you would spend more money than Whole 30. I find that it's actually more affordable.


I looked up the autoimmune shopping list and it's not much different. I know I'll need potatoes and tomatoes to keep ds happy, but not sure if dd would be ok avoiding. I'll talk to her. She adores potatoes.

#24 amo_mea_filiis.

amo_mea_filiis.

    Empress Bee

  • Members
  • PipPipPipPip
  • 7021 posts

Posted 14 August 2017 - 04:08 AM

But were those *Free* Ts? Because Total T3 and others can be tested, but only the Frees matter. Free T3 should be in the upper fourth of your lab's ranges. Free T4 should be in the upper half. None of the other Ts matter.


I don't remember what was on the lab slip.

Total is usually what's ordered, right? That's probably what it was.

I'll talk to her doc about the rest at the recheck.

#25 MamaBearTeacher

MamaBearTeacher

    Hive Mind Level 6 Worker: Scout Bee

  • Members
  • PipPip
  • 1390 posts

Posted 14 August 2017 - 05:15 AM

Since she has constipation, any chance she's been tested for SIBO (small intestine bacteria overgrowth)? I have lifelong constipation and after antibiotics for a double ear infection diminished my good gut flora I ended up with SIBO. All the sudden I was bloated all time time, achy, joint pain, fatigue, peripheral neuropathy, food sensitivities and many vit deficiencies among other things. I've been tested for lyme, celiac, RA, AS, MS, Lupus and I dont even remember what else. Everything came back negative except for the SIBO test. The symptoms effect my entire body.

https://draxe.com/sibo-symptoms/


What test did you use for SIBO?

Good luck! Not knowing the answers is extremely frustrating.



#26 transientChris

transientChris

    Bee Keeper

  • Members
  • PipPipPipPipPipPip
  • 10289 posts

Posted 14 August 2017 - 05:57 AM

First of all, the lab tests that were run- RF factor and ANA, are not definitive for either lupus or RA. Her ANA could have been down if she was on steroids. About 30% of RA patients, including me, are RF-. I got my diseases at around 23 and didn't get diagnosed until I was 31 with my first disease with my first and not until 37 with hints of second and not until 50 did the current rheumatologist figure out I had three (RA.lupus.amd Sjogren's). A good rheumatologist should be a great asset to figuring what it might be in the autoimmume spectre.

As to inflammation and help with joint pain, is she on NSAIDS like aspirin, ibuprofen, naproxen? They help with that. Also turmeric does too. I can't take NSAIDS so take 500 mg. of Nutrigold Turmeric Curcumin Gold with a black pepper extract at 2.5 mg twice a day. (I went to Consumer Lab and it was the best rated for bioavailability and I buy at Amazon for a fairly good price). In terms of magnesium which would help with constipation and any muscle ache, I take magnesium citrate 400 mg. twice a day.

#27 amo_mea_filiis.

amo_mea_filiis.

    Empress Bee

  • Members
  • PipPipPipPip
  • 7021 posts

Posted 14 August 2017 - 07:03 AM

First of all, the lab tests that were run- RF factor and ANA, are not definitive for either lupus or RA. Her ANA could have been down if she was on steroids. About 30% of RA patients, including me, are RF-. I got my diseases at around 23 and didn't get diagnosed until I was 31 with my first disease with my first and not until 37 with hints of second and not until 50 did the current rheumatologist figure out I had three (RA.lupus.amd Sjogren's). A good rheumatologist should be a great asset to figuring what it might be in the autoimmume spectre.

As to inflammation and help with joint pain, is she on NSAIDS like aspirin, ibuprofen, naproxen? They help with that. Also turmeric does too. I can't take NSAIDS so take 500 mg. of Nutrigold Turmeric Curcumin Gold with a black pepper extract at 2.5 mg twice a day. (I went to Consumer Lab and it was the best rated for bioavailability and I buy at Amazon for a fairly good price). In terms of magnesium which would help with constipation and any muscle ache, I take magnesium citrate 400 mg. twice a day.


I guess I knew this, just wanted to keep my head in the sand!

I was told no NSAIDS on lithium, which is another reason we're weaning (too many med issues, with too little benefit).

400 mag daily. Since it's a mag, cal, zinc combo, I wouldn't increase unless doc or pharmacist gave the go. (Not that you told me to increase! Just mentioning what she's on right now)

#28 amo_mea_filiis.

amo_mea_filiis.

    Empress Bee

  • Members
  • PipPipPipPip
  • 7021 posts

Posted 14 August 2017 - 07:13 AM

Just realized she does a little more magnesium.

Years ago I got supplements for ds. They did improve behavior, but not enough for the cost or the work to get the stuff in him!

Anyway, one of them was a cream (not sure the texture can be called cream, but whatever) with magnesium. He couldn't tolerate the texture on his back, so it went to dd. She uses a little on her legs I think.

Hmm, maybe I should get more because she loves it.

#29 ClemsonDana

ClemsonDana

    Hive Mind Level 4 Worker: Builder Bee

  • Members
  • Pip
  • 279 posts

Posted 14 August 2017 - 08:55 AM

It sounds like your daughter has a lot going on, but I thought I'd chime in that even 'regular' seasonal, mold, and pet allergies can cause aches all over. I started with an allergist with plans to follow up with other specialists, but once my allergies were under control a whole host of symptoms went away (aches, vertigo, heart palpitations, sleeplessness). Cherries/cherry supplements can also help with inflammation. My whole family is 'blessed' with autoimmune issues, either shot-worthy allergies, arthritis, or both. We rarely get sick, but we often feel sick-ish.

#30 Ellie

Ellie

    Beekeeping Professor

  • Members
  • PipPipPipPipPipPip
  • 31164 posts

Posted 14 August 2017 - 12:52 PM

I don't remember what was on the lab slip.

Total is usually what's ordered, right? That's probably what it was.

I'll talk to her doc about the rest at the recheck.

 

Yes, for some reason, doctors who don't know better will order total, but it is a useless number. You have to insist on the Frees. They are the amount of T3 and T4 available in the blood that the body can actually use.



#31 amo_mea_filiis.

amo_mea_filiis.

    Empress Bee

  • Members
  • PipPipPipPip
  • 7021 posts

Posted 14 August 2017 - 02:32 PM

All tick results came back and were negative. So off to rheumatology we go I guess.

We start Whole30 in the morning.