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quincy

Member Since 28 Apr 2010
Offline Last Active Yesterday, 11:50 AM
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Posts I've Made

In Topic: Ongoing Symptoms, Not Due To Gluten - Please Help Me Help My Doctor Troublesh...

Yesterday, 11:49 AM

I would strongly recommend you get tested for Lyme Disease with the Western Blot test. The two best labs are Stonybrook and Igenix. Try not to use the 2 most common labs, their tests are not as sensitive.

 

ALL of your symptoms are indicative of Lyme. I had many of them myself. I was dx'd with Celiac in 2010 and after 3 years on a gluten free diet I continued to suffer with a lot of muscle pain, stiffness in my back, constantly going to physical therapy. I also started getting terrible racing heart, bladder problems and all sorts of weird things.

 

If you have been tested already and it came back negative, I would retest. sometimes a month's worth of antibiotic therapy will cause the Western Blot test to start showing Lyme bands as you kill off some of the spyrochetes the immune system  starts to recognize the lyme and starts making some antibodies that the test will pick up eventually. Many people who are sick like you have an ELISA test or a Western Blot test and it comes back negative and they stop pursuing Lyme. It can be a mistake.

 

I have been on antibiotics for over a year and with good probiotics I have been able to do this and improve. Also test for the MTHFR genes to see if you have any mutations in your methylation/detox pathways. Believe me, it took years to piece all of these things together in my own journey to get better.  


In Topic: Celiac And Immune Deficiencies

28 October 2014 - 04:41 AM

If you feel like the vaccine may be contraindicated by your history of lyme disease, definitely check with a doctor first.  We are definitely not familiar with lyme disease here as a general group.   If it is just people on the internet saying to stay away from the preservatives and such, getting that special one you mentioned is a good compromise.  But anyone who is extra susceptible to respiratory illness can suffer terrible complications from the flu, so you just have to weigh the risk vs benefit as you have to do in most medical decisions.  

 

The laboratory standards changing is something I have heard of.  This year there was a lot of controversy with certain insurers looking at patients who were on IVIG treatment and therefore had normal IgG levels, telling them "hey you are normal now so we aren't paying for IVIG anymore you need to be reassessed after a 6 month break" and totally screwing up people's lives.  I suspect that has something to do with all of that and more standards being put into place to try and protect against that.

I saw my Lyme doctor and he said the flu shot is ok so long as I am not sick in the sense of having fever or overt symptoms. I still have to find an immunologist in my area. This recent bout of upper respiratory infection really knocked me down hard so I cannot afford to get the flu, I could lose my job if I keep calling in sick. 

 

What surprises me is that  all of us with celiac and perhaps other autoimmune issues should be checked up front for these deficiencies. I have gone all my life not knowing I had celiac until my 40's. Then found out I had Lyme for who knows how long. 

 

I say all of this because I hope others are reading/following this thread because I have a feeling many can relate to being sickly all their lives and not understanding why, then finding out you have celiac and thinking "ah ok, well this explains alot," only to keep getting sick and not feeling better after going strictly gluten-free.  THen you start peeling back the layers and there is Lyme, immune deficiencies, detox'ing problems etc etc.


In Topic: Celiac And Immune Deficiencies

23 October 2014 - 04:49 AM

Whoops, pressed reply too fast there.  Make sure the vaccine you get is one of the dead ones, and not a live one.  (Like the nasal mist).   More info can be found here: http://primaryimmune...lu-information/

thanks Laura and SMRI this has been really helpful.

 

One thing I noticed on the LabCorp report dated October 10, there is a note below the ranges that says as of Oct 20 the reference ranges will be changing, which will put the scores I received within the new ranges. Not sure how this works. Maybe the measurement will still be the same.

Once I find an immune deficiencies specialist they  will probably want to run the tests again anyway.  Going to get my flu shot. It's just on the Lyme boards, they are all adamantly opposed to them, so in my case it's damned if I do, damned if I don't. But I will get it.  There is a pulmonary group close to my place that offers a shot that has no preservatives, whatever that means.


In Topic: Celiac And Immune Deficiencies

21 October 2014 - 02:29 AM

Thanks for posting those results.  The good news is your total IgG is good, it looks like a potential IgG Subclass Deficiency (http://www.immunedis...deficiency.html ) and that is usually not as severe.  A person I know with that has a similar story as you, his ears are constantly infected and he has hearing loss from the constant infections so they keep him on antibiotics all the time.    Sometimes other things they check can still mean you need IVIG therapy, but just a few low sub-classes doesn't necessarily mean you need it.  I would definitely follow up with the immunologist so they can at least take a good look at it, and at least have someone to go to any time you get those infections.

 

There isn't much else you can do to boost immunity other than to take care of yourself overall, anything that improves your overall health is a good plus to your immune system.  If you are of the severity that you need IVIG, many people get a huge improvement in their health after going on it, so it isn't necessarily something to be afraid of.  Myself, I was like you, the sickly child, always catching everything, and once I learned and was able to treat the true cause of it all, it helped me a lot.  So for now while you are waiting to get that appointment, just do the best you can to take care of yourself, and then you can get some good answers.

Thank you, Laura TX  much appreciated. The doctor who did the labs, at my request, said the same thing.

 

Any thoughts on getting flu vaccines, or do you avoid them?  Many on the Lyme group from another site say to avoid the flu shot. I get it because I work around college students every day. But the last few times I felt bad afterwards and had to take a day off from work. It kept me from getting the flu, which in the past has been just horrendous, with high fever and upper respiratory problems.


In Topic: Celiac And Immune Deficiencies

20 October 2014 - 03:41 PM

Hi Quincy,

I have Celiac disease and Common Variable Immunodeficiency with low IgG and IgA.  People with immunodeficiencies have a greater prevalency of autoimmune disorders... I also have lupus and things related to it.  When I was first diagnosed over a year ago, my immunologist said that just low immunoglobulins is not enough neccesarily to merit IVIG treatment.  They have to look at certain things with your B cells and T cells, and what your vaccine response is, along with the immunoglobulin levels.   Then from that the decision is made of a diganosis (i.e. just hypogammaglobulinemia or the more involved CVID).  There are cutoff levels for IgG values that sometimes need IVIG, and always need IVIG.  The lower you go, the more likely you will need it.  Have you seen an immunologist yet?  That is certainly your next needed step.  

 

When it was first discovered I had CVID, it was incompletely diagnosed by a rheumatologist.  Please get yourself to an immunologist who specializes in immune deficiencies, so you have a complete diagnosis and nothing is skipped.  It is likely your doctor, if they are not a specialist, is not going to have the skill set needed to interpret your results.

 

Lastly, please go check out the Primary Immune Foundation's website at http://primaryimmune.org/, they have a lot of resources.  They can even help you find a doctor if needed:  http://primaryimmune...te-a-physician/

 

From the best of my knowledge there is only one other person on this board with experience with immunodeficiencies, a person whose child has it.  They will probably pop in to the thread soon.  Let us know what happens, and if you just need someone to talk to about the new discovery, I am here for ya.  The good thing is that you now know the cause of all the past infections and such, and it is great being able to treat the actual cause.

Thank you for the responses. I just got my lab work:

 

IgG Serum is 776 and the reference range starts at 700

 

IgG1 below normal. It is 339 and the reference ranges starts at 422

IgG 2 is good, right in the middle of the rangee

igG 3 is below normal, it is 37 and the reference ranges starts at 42

IgG 4 is in the normal range but it is 15 and the new range will start at 2 to 115 for adult males.

 

I have not seen an immunologist yet as I just got these results. My CD57 is low also, like 24. There is one close by that is an Immunologist/Allergist. Graduate of Yale. I don't know if these numbers are that bad or what. I have been treated for Lyme this past year, dx'd with Celiac in 2010.  Been sick since a child. Started with ear infections, got meningitis at 6 months old. Not supposed to be here on this earth really. Until this recent bout with a bad head cold and cough, fatigue and short fever, I was doing very well not getting sick. This was a bit of a set back for me. I am taking long to recuperate this time but I went through the ordeal of my mother's open heart surgery and recovery so I was really stressed out and running to the hospital constantly.

 

thanks for any advice or info.....!