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Should I consider myself immunocompromised?

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Lyme Disease
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Should I consider myself immunocompromised?  
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SicklySkald
Regular Member
Joined : May 2018
Posts : 57
Posted 1/8/2019 8:21 PM (GMT -7)
I have had an increase in symptoms as of late (a long list that might not necessarily be related to lyme and co-infections) and until I can see my LLMD I have seen my normal primary care provider to discuss potential causes. While several possibilites were presented, most were ruled out under the logic that they “only have acute effects in immunocompromised individuals.”

But that leads me to wonder if myself and so many others affected lyme and co-infections should indeed be considered immunocompromised. During my visit, my primary care ordered bloodwork to check my immune function, and despite just today receiving the message that the results were “normal” I can’t help but question my immune function when I’m suffering from lyme, babesia, and bartonella alongside an autoimmune condition that has prevented me from fully treating them, as I know the immune system is much more complex than that which can be determined through blood work.
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sebreg
Forum Moderator
Joined : Jun 2015
Posts : 1681
Posted 1/9/2019 5:34 AM (GMT -7)
I don't think the immune dysfunction caused by the infections is always identified via the common lab tests. One thing that may be worth looking into is MCAS (mast cell activation syndrome). Especially if you have trouble tolerating antimicrobial treatments, that can often be due to immune hypersensitivity to pathogen die-off. I've heard this is related to histamine cascades. Many with MCAS find some relief with antihistamine combos, and for me it has made treatment more tolerable.

Here is an article on the subject: https://www.lymedisease.org/lyme-sci-mcas-agony/
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astroman
Veteran Member
Joined : Mar 2014
Posts : 5771
Posted 1/9/2019 8:22 AM (GMT -7)
There are a few possible genes responsible for immune cells. 23andme test has these. Ive identified some. This needs to be addressed by the lyme community Drs ext, many chronic lymies might have this gene. People spend thousands on meds and herbs but wont invest $150-$200 in gene testing lol. There is a reason some people are chronic and some are not..

These genes can be switched off, and possibly stay switched off even after you feel well. This might explain the vast amount of "healed" lymies who still have low CD57 and more specific immune cells. Key word....."might". LLMD's seem to ignore this since its usually above their knowledge set.

I tested immune cells with several labs to see the difference- they were very close to the same results. The Immunologists (all of them) said dont worry since you not sick. Typical Dr answer.....wait till you sick then deal with it. We all need properly functioning and volume immune cells to fight infection and cancer.

Supplements that might elevate T cells can also piss off autoimmune, so what does one do?

The popular llmd's need to figure this out as no one seems to be working on it. Kill all you want, that might not improve your immune cells though. HELLO???

I was tested for mast cell a few years ago -negative.

Post Edited (astroman) : 1/9/2019 11:09:43 PM (GMT-7)

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SicklySkald
Regular Member
Joined : May 2018
Posts : 57
Posted 1/9/2019 9:31 AM (GMT -7)

sebreg said...
I don't think the immune dysfunction caused by the infections is always identified via the common lab tests. One thing that may be worth looking into is MCAS (mast cell activation syndrome). Especially if you have trouble tolerating antimicrobial treatments, that can often be due to immune hypersensitivity to pathogen die-off. I've heard this is related to histamine cascades. Many with MCAS find some relief with antihistamine combos, and for me it has made treatment more tolerable.

Here is an article on the subject: https://www.lymedisease.org/lyme-sci-mcas-agony/

Mast Cell Activation is precisely the autoimmune condition that I have! Antibiotic treatment is indeed what triggered it, and I actually have experienced allergic reactions from it so I’m on 10ml of Cromolyn Sodium before every meal. Its helped the acute symptoms like swelling but I doubt its doing anything for the increased brain fog and fatigue.
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SicklySkald
Regular Member
Joined : May 2018
Posts : 57
Posted 1/9/2019 9:36 AM (GMT -7)

astroman said...
There are a few possible genes responsible for immune cells. 23andme test has these. Ive identified some. This needs to be addressed by the lyme community Drs ext, many chronic lymies might have this gene. People spend thousands on meds and herbs but wont invest $150-$200 in gene testing lol. There is a reason some people are chronic and some are not...

I’ve actually had the full 23andMe gene testing done, might you be able to elaborate which genes specifically are you referring to so I can go back and check my results?
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astroman
Veteran Member
Joined : Mar 2014
Posts : 5771
Posted 1/9/2019 9:55 AM (GMT -7)
EDIT: this and my following comments were addressing another comment saying autoimmune does not exist that has since disappeared , was deleted later on it the day.
------------

There are identified genes for some autoimmune diseases and antibodies associated with some.. Call them what you want it’s a label, but it’s a label for a set of symptoms that truly exist for certain said diseases. Some can be fixed with diet Based on what’s missing in your digestive enzymes ect. That’s what functional medicine is all about read Dr Amy Myers.

Identifying genes to be aware (can save your life sometimes I already did that) and “working on them” are two different subjects . Hopefully there will be more ways to "work on them" in the future.

Post Edited (astroman) : 1/9/2019 11:18:45 PM (GMT-7)

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astroman
Veteran Member
Joined : Mar 2014
Posts : 5771
Posted 1/9/2019 11:04 AM (GMT -7)
Word play : One could say chronic Lyme is balony too, it’s a label of symptoms that start immune issues, the bacteria does nothing to some people.

Post Edited (astroman) : 1/9/2019 11:03:44 PM (GMT-7)

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Quin
Regular Member
Joined : Oct 2018
Posts : 179
Posted 1/9/2019 5:50 PM (GMT -7)
Interesting. When I got Lyme disease, one of the first symptoms was that I started having a lot of allergies.
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