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Viruses & skin infections & stupid T cells, oh my.


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I posted a bit about all of my immunoassays on here but I got more done & you can bet those all came back just as colorful. Super positive for Rubella & HHV6, positive for EBV, negative for CMV. My cell counts (NKCs, suppressors, etc...) were all fine but on the very low end. The NKC interval was 80 to 400 & I had 87. My Absolute CD 3 & Absolute CD 4 Helpers were sky-high, RBCs were low (no surprise there, I've always been barely anemic) as well as MCHCs (i don't even know what those are..). Lymphs & MCVs were also both high, although once again I don't know what the latter is. Candida count was 2041, which is class one & fine. :)

 

Today I also found out I have MRSA. I get ingrown hairs all the time so I didn't think twice about a little bump that appeared on my left leg about a month ago. Yesterday when I started picking at it got red, sprouted a little worm looking projection, & became really painful. By the time I showered a few hours later it was almost the size of a golfball, almost rock hard, & EXCRUCIATINGLY painful. As soon as I stepped out of the shower it burst, spewing white pus, clear pus, & blood. I drained it so many times but it just kept getting bigger, harder, & seemed to be an infinite pit of nastiness. When we put Peroxide on it it turned white. This morning it was probably the size of a baseball, hard but not draining, & not AS painful. The doctor said it's MRSA even though we couldn't get it to drain so now I can add Bactrim ointment & pills to my never-ending list of meds. She gave me lots of refills for the ointment, told me to put it on every possible cut, scrape, or abrasion & is also making my Mom & stepdad use it in their noses.

 

Rao isn't back from his vacation in India so we have yet to discuss all of my results (he did prescribe Valtrex for the HHV6 though, which has made a HUGE difference!!!). PITANDS Moms & patients, Lyme Moms & patients, I pose the impossible question... WHAT IS WRONG WITH OUR IMMUNE SYSTEMS?! & Can anyone help me interpret my results?

 

Also, sorry I have been a stranger as of late. We have no working computer & getting on here on my phone is frustrating & not easy.

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Well hello again, EA, was thinking of you earlier today, hoping you were doing okay.

 

On the viruses, I have heard a number of times, people with chronic lyme typically have a number of viral infections. The chronic lyme does suppress the immune system, making it unable to fight the viruses one encounters in everyday life. It reminds me of the early 1980's when people were scared of people with HIV/AIDS, where the experts would explain it is really the people with HIV/AIDS that should be afraid of the others, as most people carry a small amount of various viruses around--the healthy people fight them back, but the people with HIV/AIDS when exposed can have a tough time fighting off the virus, so it can do some damage. Lymies are frequently not that bad off, but we really are to some degree. Most lyme treatment does not focus on killing the viruses, as they are everywhere, and once the lyme is taken care of, the immune system returns and can handle the viruses on its own. Of course, it's like everything else with lyme, there still is managing the symptoms to consider, and if valtrex helps for the time being so be it.

 

On the MRSA, goodness, what a mess! Wish I had some good advice, I haven't heard of that one. I've heard that some with lyme have staph in the sinuses, feeding biofilm into the bloodstream, and there are some treatments for that. If the problem persists over time, perhaps that's a possibility to consider, but it really doesn't sound the same to me. Not only does lyme suppress the immune system, it actually changes your DNA to make you less able to fight infection. Hope you can get this figured out!

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I am labeled "immunosuppressed", not "immunodefficient". I have no idea whether or not that matters but felt that it Beared mentioning, haha. We know that I am shedding vaccines, not fighting viruses at all, & that my suppressor T cells are functioning at half capacity. I have a LOT of abnormal immuno lab work stuck with a magnet to my fridge, but my immunologist is currently on vacation in India so we have not gotten to disuss the vast majority of it as of yet. I just know that all my numbers that should be high are low & vice versa.

 

Valtrex helped my mood, disposition, & overall feeling. My shoulders didn't hurt as badly, I had seemingly boundless energy, & I am MUCH less irritable. The OCD has increased but I don't think that it's necessarily attributable to the Valtrex.

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I don't doubt for a second that Lyme can & does suppress immune system function but it's kind of a "Which came first ; the chicken or the egg?" thing for me. Does my immune system suck because I have Lyme or did I get Lyme because my immune system sucks? Personally I lean towards the latter since I have always been a very sickly kid, but it got worlds worse when the Lyme came into play. I think there is an underlying immune issue, be it deficiency, suppression, or whatever, in PITAND, Lyme, & even some Autism.

 

Your other comment reminds me of what my immunologist said to me when I told him I was on Lyme treatment ~ "Well, what point is there in waging war when you don't have your soldiers?" he didn't think that we shouldn't be treating the Lyme but he thought we would be wasting valuable time & money by ignoring potential underlying causes & possibly turning around from Lyme treatment just to catch something else. Besides MY doctor obviously, where would be a good place to search for information pertaining to immunodefficencies & things like that? Because at this point we're both scratching our heads, unsure of what to check for next...

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Your other comment reminds me of what my immunologist said to me when I told him I was on Lyme treatment ~ "Well, what point is there in waging war when you don't have your soldiers?" he didn't think that we shouldn't be treating the Lyme but he thought we would be wasting valuable time & money by ignoring potential underlying causes & possibly turning around from Lyme treatment just to catch something else. Besides MY doctor obviously, where would be a good place to search for information pertaining to immunodefficencies & things like that? Because at this point we're both scratching our heads, unsure of what to check for next...

 

Maybe you could search around on sites like this to see if anything fits?

 

http://www.immunedisease.com/

 

Also, have you read this about KPU? I think it's something to consider.

 

http://www.publichealthalert.org/pdf/2010_05.pdf

 

It's my belief that you need to treat the lyme no matter what and then treat what else you can in the mean time while searching for all the other answers. I am so sorry for all the things you are going through but I am glad you are making small improvements. It seems your body is trying to get well and stirring up a lot.

 

Susan

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Hi Emerson,

 

What are your D levels? Early last year, before discovering my DD's D levels were catastrophically low (4), she was getting one skin infection (bacterial and viral) after another. She was put on 50,000 IUs D3 for 6 months and is now taking 10,000 IUs D3 per day and has not had a skin infection since.

 

I'm so sorry you are having such difficulty! Are you taking Transfer Factor LymPlus? I have found this supplement to really help our immune system and it's specifically targeted for Lyme.

 

Nancy

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I'd encourage you to remain open-minded about the possibility of immune problems making you more susceptible to lyme when you got the tick bite (although unfortunately don't have any knowledge/thoughts on how to pursue that), and also the possibility that you have had lyme all your life passed on from your mother (as that can happen, don't know if she's been tested).

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Two great places to learn about immune deficiencies:

 

www.primaryimmune.org Give them a call-they will send you all kinds of free info and set you up with a Peer Advocate in your area. The Publications link on their site is really informative. This is a really great organization. There is an online community available right on this site. May be worth joining and asking them some questions. I learned a lot when my dd was first dx'd. Need to spend some more time on there but just don't have the time!

 

http://jmfworld.com/ Somewhere on the site you can find a 4 step testing procedure for Immune Deficiency. Looks like it is under the "About PI" tab.

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I'd encourage you to remain open-minded about the possibility of immune problems making you more susceptible to lyme when you got the tick bite (although unfortunately don't have any knowledge/thoughts on how to pursue that), and also the possibility that you have had lyme all your life passed on from your mother (as that can happen, don't know if she's been tested).

 

And to add to Micheals thought: I remember you mentioning that your brother has autism. Many think that Lyme can actually cause autism, so the possibility that you both got Lyme in utero is not out of the question. I guess at this point it may not matter for you which came first, but it could be information that could help your brother and mother.

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Your other comment reminds me of what my immunologist said to me when I told him I was on Lyme treatment ~ "Well, what point is there in waging war when you don't have your soldiers?" he didn't think that we shouldn't be treating the Lyme but he thought we would be wasting valuable time & money by ignoring potential underlying causes & possibly turning around from Lyme treatment just to catch something else. Besides MY doctor obviously, where would be a good place to search for information pertaining to immunodefficencies & things like that? Because at this point we're both scratching our heads, unsure of what to check for next...

 

Maybe you could search around on sites like this to see if anything fits?

 

http://www.immunedisease.com/

 

Also, have you read this about KPU? I think it's something to consider.

 

http://www.publichealthalert.org/pdf/2010_05.pdf

 

It's my belief that you need to treat the lyme no matter what and then treat what else you can in the mean time while searching for all the other answers. I am so sorry for all the things you are going through but I am glad you are making small improvements. It seems your body is trying to get well and stirring up a lot.

 

Susan

 

Suz ~ our main source of confusion is that I have enough of all of my cells... They just aren't functioning. Most of the PID's I've read about leave kids lacking T &/or B cells Or some other immune system component. Definitely not dismissing the idea, just haven't found any that fit me yet. I am definitely kicking the Lyme's butt & thank you for your kind words!

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Hi Emerson,

 

What are your D levels? Early last year, before discovering my DD's D levels were catastrophically low (4), she was getting one skin infection (bacterial and viral) after another. She was put on 50,000 IUs D3 for 6 months and is now taking 10,000 IUs D3 per day and has not had a skin infection since.

 

I'm so sorry you are having such difficulty! Are you taking Transfer Factor LymPlus? I have found this supplement to really help our immune system and it's specifically targeted for Lyme.

 

Nancy

 

As far as I know this is my first skin infection but I don't even know what D levels are! Care to enlighten me?

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I'd encourage you to remain open-minded about the possibility of immune problems making you more susceptible to lyme when you got the tick bite (although unfortunately don't have any knowledge/thoughts on how to pursue that), and also the possibility that you have had lyme all your life passed on from your mother (as that can happen, don't know if she's been tested).

 

I've always been open to the underlying immune problem theory! That's what We're searching for right now, as a matter of fact. Not so open to the congenital Lyme hypothesis though. I think that one's a little overused because I have yet to meet, see, or hear of any proven case that isn't profoundly disabled. Not to mention that my Mom doesn't have Lyme. With hOw sick my half siblings get (ALL of them have had Pertussis at least once) I think it's got something to do with a bum paternal gene.

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Two great places to learn about immune deficiencies:

 

www.primaryimmune.org Give them a call-they will send you all kinds of free info and set you up with a Peer Advocate in your area. The Publications link on their site is really informative. This is a really great organization. There is an online community available right on this site. May be worth joining and asking them some questions. I learned a lot when my dd was first dx'd. Need to spend some more time on there but just don't have the time!

 

http://jmfworld.com/ Somewhere on the site you can find a 4 step testing procedure for Immune Deficiency. Looks like it is under the "About PI" tab.

 

Thank you! That Website is awesome! Every other attempt I've made to find an immunological forum has been fruitless, haha. If only we had time to join all the forums...

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I'd encourage you to remain open-minded about the possibility of immune problems making you more susceptible to lyme when you got the tick bite (although unfortunately don't have any knowledge/thoughts on how to pursue that), and also the possibility that you have had lyme all your life passed on from your mother (as that can happen, don't know if she's been tested).

 

And to add to Micheals thought: I remember you mentioning that your brother has autism. Many think that Lyme can actually cause autism, so the possibility that you both got Lyme in utero is not out of the question. I guess at this point it may not matter for you which came first, but it could be information that could help your brother and mother.

 

All of my siblings are half siblings so he really is my "brother from another mother", hahah. Further complicating everything.

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I'm referring to vitamin D levels. It plays a very important role in the immune system. There has been some research on it recently. Even more important now that you have TBI. Your level should be up over 60 I believe. Some here may say as high as 100.

 

Hi Emerson,

 

What are your D levels? Early last year, before discovering my DD's D levels were catastrophically low (4), she was getting one skin infection (bacterial and viral) after another. She was put on 50,000 IUs D3 for 6 months and is now taking 10,000 IUs D3 per day and has not had a skin infection since.

 

I'm so sorry you are having such difficulty! Are you taking Transfer Factor LymPlus? I have found this supplement to really help our immune system and it's specifically targeted for Lyme.

 

Nancy

 

As far as I know this is my first skin infection but I don't even know what D levels are! Care to enlighten me?

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