When is a herx really a herx and when is a symptom part of the disease.

[lynnie_sydney]

Hi Kim – one more thing to deal with, huh? Could be seen as another burden. Alternatively, you could see it as another piece of that puzzle now in place that you are working so diligently on. One thing I promise you: you WONT die of boredom. It may take a little time to adjust, but then it is a 'snack'! Let me know if you need any help on your new gluten-free path. There is hidden gluten in some things (which is not legally required on labels) and you will need to take care not to lose too much weight  (unless, of course, you want to!) Lynnie 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[martysfolks]

Reply to all you wonderful angels on this board.  It is so uplifting to be able to tell someone that your life is not going well and you are distressed.  I finally let it out that I was not a happy camper and you all lifted me up.  Thank you.  Saw my Infectious Disease Doctor today.  Second visit.  The man is a genius and I don't have to fight with him about getting antibiotics.  He's done two blood tests on me so far and is planning to test me some more.  He thinks I have more than just Scleroderma.  He said, the Pulmonary Fibrosis is another disease and there are so many, that we think are symptoms of one disease. It is the first doc that has taken an interest in getting me whole and not just follow a protocol because I insist and most of them in the past knew nothing about.  I got so tired of chasing Rheumy's.  The last one, said he could not treat me with antibiotics, but knew someone who could, wished me well and said to me, ” I must treat with steroids and hope you prove me wrong.  My hands are tied.”  That was the most honest Rheumy I ever encountered.  He referred me to an “Infectious Disease Doc.”  Today, the I D doc answered all my questions.  He ordered more blood work and ordered the lab to give me a vial for the stool specimen.  He is testing everything.  Something I have never had.  He said to cut back on the Benicar a bit.  And to substitute the Clindamycin in Phase 3 with Bactrim.  We will do more testing once I start phase 3.  I didn't talk about the situation at home and my feelings that I may be depressed because truthfully, I don't know what depression feels like.  I am normally a very happy, excited about life, and always looking on the bright side, type of person.  My cup is always half full.  I like fun, I laugh a lot, I dance around the house all the time, but lately something has changed.  I am not happy.  So, I asked, could this be depression? Several brought up the subject about being deficient in Vit D.  That is a possibility.  I haven't seen the light of day in over a year.  That alone can be depressing.  If I knew what depression was!  I will bring that up at my next appointment and keep you all in touch on how I handle this problem.  Love you all, love the site.  You are all angels.  Thank you, Take care~~~Dolores P. Rosner

[Kim]

[user=968]MJ[/user] wrote:

Hi Kim,

Wow, I can't believe you were dx with celiac too!!! We had talked about that before and at that time, you didn't feel that you had celiac. Did you decide to go ahead with the test per the drs. recommendation or you just trying to solve the mystery?  Lynne said that she didn't improve much on AP until she dx as celiac+ and went gluten free. I believe she said that it took her over 6 months gluten free and then AP kicked in for her finally reversing her SD symptoms.

Now I'm wondering if I could be celiac+ and that is the missing link for me. I've never had a problem with my GI tract ever although the past few years I've become more constipated. Not horribly, but I eat alot of yogurt and take the psyllium husk and drink coffee to help. Who did you use for the test?

How is your sister doing since going on the AP?

Martha
 

Hey Martha.  So good to hear from you again.   I learned from the good people on this board that the best Celiac test is from Enterolab.  You can go directly to their website and they will send you the stool sample kit and you don't need a doctor's order.  I ordered the full Gluten Panel and the DNA Gene Testing because of all the parallels running through my family.  If one parent has the gene (even if they were never sick), there's a 50% chance they will pass that gene on to you.  They also run a dairy sensitivity test.  Seems I got a gene from both my parents which makes it a little more severe ~ natch, right! :X

It's only common sense that you will not get better until you heal your gut.

Today I will break the news to my kids how genetically screwed they are. :doh:

[Kim]

[user=30]lynnie_sydney[/user] wrote:

Hi Kim – one more thing to deal with, huh? Could be seen as another burden. Alternatively, you could see it as another piece of that puzzle now in place that you are working so diligently on. One thing I promise you: you WONT die of boredom. It may take a little time to adjust, but then it is a 'snack'! Let me know if you need any help on your new gluten-free path. There is hidden gluten in some things (which is not legally required on labels) and you will need to take care not to lose too much weight  (unless, of course, you want to!) Lynnie 

Thanks, Lynnie, for the encouragement.   I'm done whining now. 😉

[Rosey UK]

Hi isn't MP to do with no Vit D? coz if it is you need to read what Dr mercola and others are syaing it's so imporatant to have Vit D. for your condtion and others.

Rosey

 

[MJ]

Hey Kim,

Don't think of your kids as being screwed because of your bad DNA. They are so fortunate that they have a mom and grandma who cares so much for them to try and forge through and discover answers not only for herself but for them as well:D. Hopefully, we can make a difference for them. And THANK GOD for the internet! Can you imagine trying to figure this all out 10 years ago.

There is an answer out their….and I agree with you, everyone has to try to figure out what works for them. Though I tend to agree with the MP science, if AP alone had worked for me, I wouldn't of messed with it.

Do you mind me asking how expensive the Enterolab fecal test for celiac is??? Can they do the gene testing also with the same specimen or do they need blood. You've never had symptoms of celiac-correct???

Best, Martha

[Kim]

[user=968]MJ[/user] wrote:

Hey Kim,

Do you mind me asking how expensive the Enterolab fecal test for celiac is??? Can they do the gene testing also with the same specimen or do they need blood. You've never had symptoms of celiac-correct???

Best, Martha

Correct, I didn't know I had symptoms of Celiac.  Below is the list of charges and tests I had run.  They said for the time being, they are throwing in the dairy test (anticasein IgA)  for free and you can reduce the bill by not getting the DNA Gene test.  There is no blood involved — the Celiac test is from the stool sample and the Gene panel is a saliva swab.

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

* Itemized Costs and Insurance Codes:

Anticasein IgA (CPT 83520)
$ 0

Quantitative fecal fat (CPT 82710)
$ 70

PCR Amplification (CPT 83898)
$ 30

DNA Isolation (CPT 83890)
$ 30

DNA Separation (CPT 83894)
$ 30

Probe Identification (CPT 83896)
$ 30

Molecular Identification and Interpretation (CPT 83912)
$ 10

Antigliadin IgA (CPT 83520)
$ 99

Antitissue transglutaminase IgA (CPT 83520)
$ 70

Materials and shipping charge
$ 25

Total charge:
$ 394

[Parisa]

Dolores,

I'm glad that your Infectious Disease doctor is trying to help you out – alot of them have bad names in the Lyme circles but I'm sure there are some good ones out there.  If you have Lyme disease or tick borne diseases, it's possible to have many co-infections.  They are little bags teeming with disease.  One that might be rearing its ugly head could be Babesiosis, a malarial type disease.  I know, I know, it's hard enough to think you might have to try and wipe out mycoplasma, why even think about something so strange?

Have you tried Zithromax or Flagyl?  They can't wipe out Babesia on their own but can help some.  Sometimes it's a matter of rotating in different antibiotics and seeing if they nail something.

The celiac/gluten free can be a definite issue so it's worth looking into.

Vitamin D ?????  I'm sure all of us would like a definitive answer on that one.

Hang in there.  Don't feel bad for feeling bad.  These diseases put us all through the wringer.

[casey]

Hi,

Just want to put in my 2 sense here!

One does not need to have the classic celiac disease symptoms to have celiac or gluten sensitivity. Classic celiac disease presents itself with the poopies  and loss of weight . Not having these classic symptoms does NOT rule out that one does not have a problem with gluten.

I also want to add that if one is concerned about a gluten problem ( which i think we should all at least consider this as a co-factor) then the first test that should be done is for IgA. It is a simple blood test done by a doc. If the test comes back normal, then a regular celiac blood test can be done and if positive , you have a quick result. If negative , i would spend the money and do enterolab.  Now, IF you have IgA defiency to start with (which i do) you will already have gluten sensitivity /celiac which will set off a low result/negative result in the other celiac/gluten tests.

Kim, sad to hear you have this but i  somehow guessed you already did. Over time, you will become the cook with the imagination professional cooks don't even have. It is a hard thing as our “free will” to eat whatever,  and whereever has been taken. Do know this, my family eats so much better and healthier than we ever did and i have to say we do feel better to. I look now at what and where we used to eat and can see what contributed to us  becoming  sick. I know this may not sound good, but you have so much info with just that enterolab test to help all your children and grandchildren to either get tested or just change their diets based on what they see you and your sister suffer from. You may very well prevent future disease in them with this info. I wish i would have known my mom or i  was celiac earlier and maybe i could have prevented damage in what 70% of our immune systems are…the gut. Maybe my son would have escaped some of these problems he has now had i had known and did something about.

Also, hubby was just diagnosed with this as well. No wonder our son couldnt escape. funny though, my son is much easier with the way we have to eat….hubby is a complete nightmare!!

Casey

[Kim]

[user=9]casey[/user] wrote:

Also, hubby was just diagnosed with this as well. No wonder our son couldnt escape. funny though, my son is much easier with the way we have to eat….hubby is a complete nightmare!!

Thanks for the info, Casey, you know so much more about this than I do; in fact, you were one of the dear souls that kept hounding people to get checked.  

Bummer about your husband.  Were you fixing him different meals?:shock:  I've already told my husband he could consider himself GF now too. :roll-laugh:  There was no comment.

[casey]

Kim, i was somewhat cooking different meals for all of us. Some of the gluten free stuff though , my hubby did like better. Now no choice.

Something to pass on that has worked wonders in cooking here. A crockpot or slow cooker. I can make so many meals with all kinds of veges and lots of them incopporated with meat protien in smaller doses. Lots of different spices and the meals all taste different and good with very little work. anything that calls for flour for a thickener, use corn starch , potato or a little tapioca starch.

I even have a little tiny crok pot about the size of a poporri pot. Right now for dessert tonight , i have sliced up apples with some stevia, nutmeg, cinammon and a bit of corn starch  brewing . House smells so good with this and I also have  the big crock pot holding a vege stew with a small amount of our home grown organic  beef. Put all this together in 1 hr this am and have a whole healthy gluten free  dinner ready for tonight.

You try the crock pot Kim , it will help and btw, i am looking into the sauna now. Us dear souls are here to help one another and that is a big purpose for our existance on this earth.

Take care,

Casey

 

[casey]

I guess what i forgot to say when applying this gluten subject to  a herx or disease process, is that even though we may be on AP and some of us are still exhibiting signs of something and we cant figure out what it is , well , if gluten/ dairy or any other allergen is entering the picture here, we will still have inflammatory immune processes ocurring regardless of what or how many abx we take. We must try to remove everything that can be a possible cause of inflammation.

For example, if i have tested positive for bacteria and take abx , AP , MP , whatever P  but have undiagnosed celiac or other sensitivities and continue to consume these things that cause inflammation, my immune system will never be able to fight the bacteria as my system will continue to be compromised with what my body can't process therefore i likely will still exhibit disease progression. Makes sense to me.

This also applies to other factors we just havent found yet.

Casey

[casey]

BTW,

In Italy, it is madatory/law that all children are tested for celiac disease at the age of 5 . Whether that says Italians genetically are more susceptible to celiac,  or that they consume such large amounts of breads and pastas , i don't know. i would think it is more genetically passed as 5 yr olds have only had around 4 yrs exposed to to gluten but the parents have all their lives .

Gee, and my moms side are all Italians and yes, i was raised with all the breads and pastas

 Had we all been born in Italy and lived there till age 5 at least, we would all have been diagnosed by now…but thats only if they know about IgA defiency.

Casey

[casey]

Kim , I want to expand on the “miserable” hubby thing. Imagine this….. celiac diagnosis and 9 amalgam fillings removed in 2 weeks. We are “tiptoeing” around lately!

But , it will only get better. More nutritious food and mercury gone bye-bye!!!

 

[Kim]

Very interesting.  Your dinner tonight sounds scrumptious!:blush:

[Author]

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