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Results From Immunologist Work Up. Ebv Titers Still Through The Roof!


Kris4444

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My whole story began with an EBV infection in 2009. EVERYTHING went downhill quickly from day one. My titers (IgG) have remained very high from the onset so I wasn't surprised yesterday when I met with my new doctor, an immunologist, to go over the blood work we took 2 weeks ago, when she told me that they were over 6x's higher than what is normal.

She also said that my IgG's in general are very low. She explained that these are the cells that do the long term type fighting of disease and viruses. She said that she needs to find out if they are "whimpy" or just "stupid." The way to find this out is to vaccinate me with the pneumonia vaccine. If my cells are whimpy they will at least make an attempt to increase and fight. If they are stupid then we will have to consider infusion of other people's IgG's with a drug called Hizentra which you inject subcutaneously yourself at home. This freaks me out a little bit. Not the needle part but the part of "other people's blood product". I know they screen for everything but there is a disclaimer that you may end up with other viruses Kind of scary.

My vitamin B12 and D were low so we are supplementing them. She started me on another probiotic (florastor) which is supposed to help with some of the GI issues (constipation). She is not happy that I have had to continue taking Advil as she feels this is one of my triggers for the flushing episodes. I went back to work and my joint pain is out of control. Nothing else helps. She also wants me to stop using Noxema which I have used every day of my life since I'm 13. She said that it contains the same chemical as NSAIDS, salicylate, and this is a known trigger for flushing. Who knew. I agreed to stop washing my face with the Noxema, she gave me some samples of hypo-allergenic facial cleansers that I will try. I highly doubt that is the problem but who knows.

As for mast cell stuff...she says she does not believe that is my problem. My blood work looked pretty good considering and my levels for mast cell issues were fine. I have read that serum tryptase doesn't really give an accurate assesment of what is going on inside the body. I pointed out to her that my GI doctor had them look at my biopsy from August of my colon and there WERE mast cells present. She still stuck to her guns and said she really doesn't think that is my problem and wasn't interested in testing me further for them.

I did ask about Natural Killer cells. She said if I am really curious she can test for them but that she already knows they are going to be low because my other IgG's are low and I have chronic EBV. She wanted to know where I heard about NK cells!! I told her that I have a "friend" whose daughter had EBV and they tested her to find out that they were still trying to kill the virus. Thanks to my friend (a member here on this forum) for the information. I actually think she was impressed!

I did leave her with a couple of articles about mast cell issues and GI problems as well as mast cell with hyper-pots. She said she would "try and glance at them in her very limited time". But said that she was happy that I had underlined the things that pertained to me.

I'm hoping that her treatment is what other immunologists would do. I have no idea, my husband thinks she sounds like a quack lol! I don't know.

What do you guys think? Is this pretty normal Immunologist stuff? Have you heard of the types of treatments she is suggesting? Is it a good idea to vaccinate for pneumonia when my immune system is running low? What happens if I end up getting sick from it? Can that happen?

Lots of questions. I'm hoping maybe some of you have had similar questions and can help me out. Thanks again!!

Kris

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There are several of us that have hypogammaglobulinemia (low IGG levels). This is indicative of an autoimmune disorder. That is how they conclusively test for it. But . . . . I did not want to do the vaccine and did not do it. I did however have my pneumonia antibodies all 20 something of them tested and I have hardly any immunity at all and was told if I got pneumonia - I could very possibly die from it. (He had to say it a couple of times and write in my report that I refused the vaccine and that he had told me the consequences.) But, the treatment is IVIG - which is from plasma of other people or plasmapheresis. I'm actually not doing either and am right now trying LDN to see if that will help my immune system ---instead of other things that could have lots of consequences.

There is another person on the forum that I know has come back with really high titers of virus and is doing antivirals. Maybe she will chim in and talk about that.

NSAIDS and aspirin are known to degranulate mast cells. Interesting that she would say stop them they could be causing your flushing --which could be a mast cell thing in itself and then not think you have a mast cell issue. Those are conflicting statements. LOL! If it were me, I'd probably still pursue this avenue. Treatment with GastroCrom also helps the immune system according to the literature I've read and it along with H1 and H2 have helped me.

Issie

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From the beginning, your talking about how you got sick after the EBV infection has seemed like a major avenue to investigate, in addition to the mast cell angle. I too became ill in 2009 after what was originally thought to be a post op infection. When I didn't get well my doctor ran a mono spot and some other viral titers that came back positive. Then he decided that I'd had mono instead (even though I hadn't had any mono type symptoms).

I've recently seen an ME/CFS specialist (immunologist) and had titer levels done for multiple viruses that also came back extremely high. IgG subclasses were low in 2 of them. My Natural Killer cell function was extremely low. The doctor I saw didn't recommend injecting me with a pneumonia vaccine but then, the doc I saw is focused on using anti-virals to treat this so that's what we're doing now. His theory (supported by some research) is that viruses can get into the sympathetic chain of the autonomic nervous system and cause a lot of the autonomic symptoms we get. I'm wondering if, since the mast cells are so close to the vessels, a lot of our mast cell type reactions are being caused in response to this as well?

I know there is a lot of debate in the medical community as to whether the mast cells are the cause of our symptoms or if they are just reacting to something else that is causing our problems. For me personally, it has always seemed that my mast cell type reactions have been just that...reactions...but not a causative factor, i.e when my autonomic symptoms are better controlled my mast cell type symptoms are better controlled even without specifically treating the mast cell type symptoms. But, if my allergies are bad, my autonomic symptoms are much worse too, so clearly there is some interaction between the immune system and mast cell issues and autonomic issues.

My POTS neuro has said all along that basically we need to treat anything we can to get us away from the "threshold" at which we cause massive flares of POTS symptoms. So a multi-faceted approach in affect. That's why anything I can do to help with that including diet, moderate exercise (as tolerated), sleep, meds (whether MCAS meds, or ANS meds) etc are all part of that attitude for me of trying to stay away from that trigger point at which I set off those POTS flares. Adding in the anti-virals is my attempt to see if maybe, just maybe it will treat the underlying cause of this mess in my case.

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I wasn't given a pneumonia vaccine but did have my antibody levels for pneumonia checked. My immunologist also ran the same test but for tetanus antibodies (which I have had tetanus vaccines) for the reason your immunologist stated, to see what if any immunity my body was able to develop from vaccines.

I know it is scary to hear that you might need a biologic medication. =-/

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Hi Kris, you can tell your husband that your immunologist is not a quack. She is testing you for a primary immune deficiency. Your total quantitative immunoglobulins have come back low. The vaccine challenge is the second tier testing to determine how damaged your immune system actually is. You are actually very fortunate to have an immuno who even knows how to properly test for this, most are just allergists and immune deficiency isn't even on their radar. If you have this it is very difficult for your body to fight off infections of any type. It depends on which of your immunoglobulins are low. Do you know which ones are low for you? Did she also do a sub igg panel?

Primary immune is an excellent website to read about primary immune diseases http://primaryimmune.org. Issie is right the concern with a nonfunctioning immune system is that you will get an infection that your body will not be able to fight off and could cause death. Since the advent of treating with ivig and now the subq form, the death rate has dropped. Issie, has a lot going on an I understand her reasons for not considering immunoglobulin replacement at this time. It is there for her should she ever need it.

I myself have CVID or common variable immune deficiency. I have been on ivig for about two years now. I am tolerating it well and have had improvements with my infection rate. As well as some improvement in my autonomic small fiber neuropathy symptoms. Whether you do subq or ivig is a treatment choice and there are pros and cons to both, as well as handful of different brands to choose from. My choice was ivig as I only have to deal with it once a month vs weekly with subq, plus I don't think I could stick myself. I'm also on a higher dose then is used in subq. There are things to consider should you and your doctor decide this is a treatment for you. Let me know if the time comes and I'll help you with that. There are some side effects and things you can do to avoid them. There are also some good support groups for this.

It is interesting about the viral load you and chaos are talking about. I did have severe mono and I also have elevated cd8s, which I read recently are usually caused by a viral exposure. I also have several autoimmune diseases. The research that is being done by Dr. Charlotte Cunningham Rundles, is investigating a genetic component as the cause and she does note that in about 20% of her patients there is also autoimmunity found in companion with the cvid. It is more like once you are immune compromised then whole immune system is compromised leading to autoimmunity. Not that the autoimmunity is causing the immune deficiency. It is the other way around. If in fact there is a genetic component trying to improve the immune system without addressing the gene defect may not work. However, the genetic component is only at the research level and there are not currently an treatment options to get to it at that level. So, the only real option right now is to replace what the body can not make. The immunoglobulin products available today are very safe and closely monitored.

Chaos, love to know how your tolerating your antiviral meds.

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Wow. I learned so much just from reading what you guys wrote on here. I asked her what this was called and she said she was working me up for an immune deficeincy disorder. She never used the phrase IVIG, I asked her if I could do this in a hospital setting rather than sub Q and she said why take the risk of getting something from the IV treatment (infection) when you can do it yourself in the privacy of your own home? Whatever.

I asked about plasmapheresis, my neighbor does this and has asked me why they haven't tried it on me. She said that would not work in my case. She didn't say why.

She mentioned putting me on an anti-viral, she mentioned Valtrex, but she said for her own piece of mind she wants to see the EBV numbers under HER care, not from previous blood draws from a couple of years ago. She also said she is hoping to catch the IgM's acting up so she intends to do another draw in 2 months.

My subs were all ok I believe so it's just the high EBV's and low IgG's that she has concern with at this point. My concern is that this has been going on for FOUR years and I have SCREAMED EBV at the top of my lungs to the TOP EXPERTS and they all just shrug, say it's no biggie. My titers are 6 TIMES higher than they should be and they have NEVER gone down. In the history of my blood work when they have tested them they have ALWAYS been extremely high yet none of them seem to care.

My gut tells me this is the root of everything yet none of them seem to care. At least I have this doctor's attention. Maybe we can get me feeling better soon.

I have not heard one word from Dr. Tinkle's office. He said it wouldn't be right away but he did say he would contact my doctors. None of them have heard from him. I hope he doesn't give up too because I have a lot of hope that he will be the one to finally figure this out.

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Oh she also mentioned that my IgE's are lower than what they should be. Most of what she talked about was on the low end of normal according to the lab but she said as an immunologist she knows where levels should be and mine are too low regardless what the lab says.

Again, my husband thinks she is a quack. The EBV was HIGH even according to the lab. They were 6.27, lab values were 0.00-0.90.

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Kris - I'm dealing with some of the same issues right now. I've been EBV positive with high titers for many years. There's conflicting information about how Doctors interpret the test results. I've been told my results mean nothing because I'm IGG positive only (meaning infection in the past). I've been told by other Doctors I have an active chronic infection only because the early antigen (IGG) portion of the testing is positive. The latest infectious disease Dr. I saw said the antibody testing means nothing (unless IGM positive) - you need to be positive on the PCR test. She sent me for that test and it was positive and she wanted to give me anti-virals. After doing some research I learned there are two PCR tests and the one I had done is probably meaningless - I need the other one. I need to talk to her about that. Anyway, I said it's not normal to have a chronic EBV infection for 15 years - shouldn't we be looking at my immune system? I gave anti-virals a brief try in the past, but had some trouble with side effects, so stopped. My HHV6 is also extremely high - even though IGG only - it's much much higher than it was a year ago and I think that must mean something. To be continued... Like Katie, I also had the tetanus antibody test and it was normal. Maybe if you've been vaccinated your Doctor can run that test instead of giving you a new vaccine.

I'm curious what type of EBV testing you had done? Where does this 6.27 number come from? Just wondering how your Dr. decides if the EBV results are meaningful.

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Hi Kris, It sounds like she is on the right track with you. Everything you said she said to you make sense from my own personal experience. Really go and read at primary immune. Probably cvid or hypogamma. BTW what happens with your temperature when you have an infection? Do you ever run a high fever?

So it sounds like your igg was low, do you know what your iga and igm were? They factor into what type of deficiency you might have. I'm pretty sure IGE is associated with allergies and is usually high when you have them. Not sure what it means when they are low. I would think they would be high if you have mast cell issues. That may be why she doesn't think this is a factor in your case.

Please understand if you do have an immune defect, it would explain why your ebv is so high, as your immune system is unable to fight it off. You will see that as a part of every immune defect plan it includes treating the underlying defect with replacement, but it also includes treating the infection be it viral, fungal or bacterial. I would think you will need to do both. As for plasmapheresis I have had that as well, and it is really used to treat autoimmunity as it filters out the antibodies. It is also difficult to stay on, has to be done in a hospital and also exposes you to infection in that environment. I don't think it is a common treatment with an immunologist, usually a neuro, rheumy or hemo might use it. I don't know if it has utilized to remove a viral load, maybe, something you could google. With your ebv and low igg I would take her up on the antiviral. Ask chaos what she is taking, she just started this protochol.

As far as ivig vs subq, she is right she wouldn't want to send you into a hospital setting due to added exposure to infections,not the ivig itself. However, I get my ivig at home now and before that I got it in an infusion center next to my docs office, not a hospital setting, so lower infection exposure there as well. A lot of docs are liking the subq as it keeps your igg levels good through out the month, with less side effects. With ivig they slowly drop until the next infusion. A lot of patients do like it. I was already on ivig when it was offered to me, since I'm getting it at home, I decided to pass.

Please have your husband go to primaryimmune and read about primary immune diseases, he will then better understand what is happening. Lots of times our family just doesn't want to think we are that sick, so it is hard for them to accept something they never heard of before. With treatment many go on to live very normal lives. Which is your ultimate goal right? Let him know that and maybe he will be more accepting.

So this immunologist is in the chicago area? We are working on Dinet's physicians list and might want to add some of the doctors you are seeing to the list, if it all goes well. You can pm with the info if you need privacy.

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Kris if she does natural killer cell testing, you want her to do the nk cell count and FUNCTION test. That's where you will likely see deficits, especially if you are carrying high viral loads.

As Naomi said, it's hard to say what's meaningful or not. According to the doc I saw, most of the viruses they aren't even finding in the blood, so the blood tests aren't probably very meaningful at all. He said they are finding them in the nerves and bone marrow and some in the brain.

Personally, my IGG was 4 times higher on my EBV this time than it was in 2009. Makes me wonder why that keeps going up if I'm not being exposed to some type of ongoing infection?

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Hey naomi, sorry your struggling with all this too. A tetanus test isn't the best one to do, because we all get boosters for it, so it can come back normal. Mine came back moderate, but I'd just received the booster a few years before and it had already dropped to low moderate response. I had no response to candida and typhus. Interestingly I get yeast infections a lot. They use the pneumonia one as the exposure is less common.

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Arizona - not sure what you mean about tetanus. I haven't had a tetanus shot in God knows how long and mine showed I still have antibodies to it... which is a good sign for my immune system, right? If you have a minute, Arizona, could give a quick list of immune system tests to get done. I picked a few and suggested them to this Dr., but I don't know if I chose the right ones.

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Naomi - My IgM was normal as well. My doctor said that because my EBV titers are so high that I must have had an active virus again recently. I haven't. I explained to her that these titers have been high like this for years and I have felt terrible since it started. I have brought this to the attention of all the doctors I have seen. She is the first one who thinks it is definately a problem but she is the first one who is an immunologist. This is her specialty so I'm assuming she knows what she is talking about.

She said that she wants to see if there is a pattern. She said a blood test is just a snapshot of a moment in time. She feels that my IgM's probably go up and down and that I have chronic ebv but she wants to try and catch them when they are up. Once she can establish this she will start me on anti-virals but not before. It was disappointing but I think she knows what she is talking about. It will be interesting to see if she is correct.

I don't know what type of EBV test was done. It says EBV IgG **Negative, no detectable IgG Antibodies to Epstein Barr Virus <0.91

Equivocal, repeat testing in 1-14 days may be helpful 0.91 -1.09

Positive, indicative of current or previous infection >1.09

Mine were 6.27

Some of the tests were done at Quest and others at a labe in Winfield, IL. Not sure where this one was done. I have had tests done as well where the lab values were 0-99 and I was at 2,850. I'm not sure how they differ.

She didn't really say much regarding the values, just that they are really high and she wants to keep an eye on them and run the test again in a couple of months.

Arizonagirl - I can't remember the last time I had a fever. My IgA and IgM were normal.

Yes the low IgE wa sher way of explaining why she didn't feel it was mast cell.

I agree that my body had been fighting the good fight for a very long time and I feel my immune system is tired. She doesn't want to rush into anything yet but has mentioned both anti-virals and infusions so at least this shows me she is taking it seriously.

I don't think my husband is interested in learning anything more about what is going on. He just wants me to feel better but doesn't want to discuss it anymore.

Chaos I have asked about bone marrow biopsies or spinal fluid or skin. They won't do any of them. I only mentioned bone marrow to this new doctor and she sees no reason to do one as she doesn't believe that mast cell is the main issue and possibly not even an issue at all. This is the one part that still confuses me.

They ran a tetanus and it came back ok. She pointed out that this shows that I had a vaccine and the immune system acted appropriately then. My pneumococcal immunity panel was all low which is why she wants the vaccine and then re-test in 6 weeks. The values show on the pneumococal but there are no lab reference ranges to compare them too so I don't know how low they are.

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I wonder if there isn't something like a virus, bacteria, protozoa that triggers some of this. With me there seem to be genetic factors ---as my mom also seems to have MCAS. It makes me wonder if something wasn't passed on from my mother and then a vaccine or something triggered it in me. Or was my immune system always compromised and just couldn't fight off things. My personal thoughts are that even Mast cell things point back to autoimmune dysfunction. I'm like Chaos thinking there is a strong connection here. I have not recently been tested for viruses ---so not sure where I fall there. But, my IGG subset 1 is what is low and I have nearly no immunity to pneumonia in all types they tested but had immunity to tetanus.

The direction I'm currently taking with my POTS is first the finding of the protozoa - which can compromise the immune system and cause havoc on it and can cause dysfunction in collagen (maybe EDS????) can potentially cause issues with blood flow (I was told that the bio-film with the protozoa attaches to the walls of the blood vessels and can cause problems with blood flow. Similar to how plaque would do.) And now more aggressively treating mast cell issues which also helps the immune system and now trialing LDN that also affects the immune system. I'm hoping this direction will make a difference with me. So far, having good results with low dose antibiotics and herbals that are anti-malarial type drugs/supplements, diet change, mast cell meds, LDN (jury still out on this one) and a few things that I've found help with my sympathetic system overdrive.

I'm paying close attention to Chaos and how her antivirals are going. Since this isn't a direction that I've been recently tested for. But, my sister who also has issues with OI does have high markers for virus. (We both got sick around the same time. Only different presentations.)

I find it interesting that so many of us are connecting autoimmune dysfunction here, along with associations with mast cell presentations. Like Chaos said --which came first? I agree, if we can't get to the root cause, or it can't be determined ----yet. We have to do whatever we can to support ourselves until the cause can be found. If these band-aids give us more quality of life ---YAY for us. I just hope we can find the cause and eradicate it and not have to just try to deal with this all. And I hope it comes very SOON for us all.

Issie

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Kris, if you don't run a fever even when you know you are sick with a cold or what ever. That is a sign your immune system isn't working. A fever is a good sign your body is trying to fight something off. When you don't get one with infection it means your body ain't doing what it is suppose to. It also makes it hard for anyone to take you seriously when you think your fighting something.

I never go by fever now. If I feel like I'm fighting something I go get a cbc test done and if my wbc comes back high I get rocephine antibiotic shots. If I don't treat what ever the infection is my wbc will keep rising. So far the shots have worked, so I'm assuming they are bacterial. I've never treated for virals, but I get a lot of fungal and do treat those as well. The fungals though don't always cause a rise in wbc.

Naomi, if you go to primary immune they have all the test you would need to have. Tetanus is still not recommended as a screening test for these conditions as we do get boosted for it, regardless of when. A "total quantitative immunoglobulin" which consistes of igg, iga, and igm and a sub igg panel are first level screening.

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Naomi - They DID test for IgM, IgA and IgG. The Epstein Bar Virus has it's own testing called Epstein Bar Virus IgG and then Epstein Bar Virus IgM. My EBV IgG was really high, the EBV IgM was normal. They also tested separately my IgE which was on the low side of normal.

Arizona girl - LOL! Gosh I guess I never thought about it like that. I feel terrible a lot of the time but never run a fever. I guess it makes perfect sense that if your immune system is messed up that you might not be able to get a fever! I am learning so much here! :D

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Yes the low IgE wa sher way of explaining why she didn't feel it was mast cell.

Chaos I have asked about bone marrow biopsies or spinal fluid or skin. They won't do any of them. I only mentioned bone marrow to this new doctor and she sees no reason to do one as she doesn't believe that mast cell is the main issue and possibly not even an issue at all. This is the one part that still confuses me.

They ran a tetanus and it came back ok. She pointed out that this shows that I had a vaccine and the immune system acted appropriately then. My pneumococcal immunity panel was all low which is why she wants the vaccine and then re-test in 6 weeks. The values show on the pneumococal but there are no lab reference ranges to compare them too so I don't know how low they are.

My understanding is that IgE is for "regular allergies" but that you can have Mast Cell issues without having regular allergies. In fact that is why it is unique from allergies because people DIDN'T have allergies on normal testing, yet were having anaphylaxis and other symptoms that were very much allergic type reactions. Or at least that was what I was told by other people who have diagnosed MCAD but didn't have traditional allergies.

Bone marrow biopsies related to mast cell issues, I believe, would be used only if they suspected systemic mastocytosis and you had an elevated tryptase level.

I don't think that the research I was referring to as far as finding the viruses in the bone marrow and nerves etc is at the "treatment" level yet. That's all still at the research level so unlikely that a treating physician would be aware of that or that you would be able to get a bone marrow biopsy done to be tested for it. Frankly all this viral research is really pretty much cutting edge so there aren't a lot of hard and fast answers and it's all changing all the time it seems like.

It was interesting to me that my chicken pox titer came back negative for both IgM and IgG even though I've had both chicken pox and shingles. Wonder what THAT means.

Chaos how are you handling your antivirals? What did he decide to put you on?

He put me on Famvir to start with. Probably will add Valcyte later on. .

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I get my prescriptions at CVS. They couldn't do the vaccine so I called another local pharmacy. They could do it. I asked them how late they were open and they told me 5:00.

We get there at about 5 minutes to 5:00 and they refuse to do the vaccine saying that they close at 5:00 and the vaccine process takes about 15 minutes. The sad thing was the lady who is telling us this and who would be administering the vaccine is my neighbor, literally lives 3 houses down on my block, and my son drives her son home from school every day! My husband threw a fit, asked to see a sign or something that states that you must be there 15 minutes ahead of time for vaccines. All the people behind the registers started in on him then yelling at him and saying "it's 2 minutes to 5:00

!". They must have had a St. Patty's party to go to or something. My neighbor had run away and hid in the back room but then came out, very disgruntled and said she would do the vaccine. I just walked away. People can be so horrible. I guess I'm not even worth an extra 10 minutes of this woman's time.

The ironic part was when we got home there was an automated phone call survey from the pharmacy wanting to know how our service was! Too bad I wasn't home to press 1 and tell them. My husband didn't know the woman was our neighbor and I'm glad because he would have really put the guilt trip on her then.

Now I get to go back and get the vaccine this morning. Hopefully I will get another pharmacist and not my neighbor because she will jab the crap out of me I'm sure lol.

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