Kris4444

My neighbor redeemed herself and apologized with tears in her eyes. All is forgiven. Yes she said to do it at the pharmacy or my doctors office. I don't want to take time off work for the doctor so I did it at the pharmacy. She wrote a prescription so I don't see what the problem would be.

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.

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!

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.

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.

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.

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

I'm learning so much on this forum. Thank you for posting all of these articles/links. I have read a lot of them online but there were many that I hadn't seen before. I wish I weren't so tired, I have my second visit with my immunologist to go over blood work and talk about MCAD/MCAS. The geneticist thinks she should have my bone marrow tested. I found out through my GI doctor that I do have mast cells in my colon biopsy from August. I don't know what the immunologist will make of this. So far her meds regimine hasn't really been helping me so I'm hoping that she will continue to keep trying to find out what it is that I need. Thanks again for all the great info!

I'm ok until I STOP. I become dizzy, tunnel vision sometimes, sometimes full on vertigo and TERRIBLE flushing! Sometimes the dizziness lingers and I'm afraid to drive home (if I'm at the barn or when I was going to Zumba). I was always very fit and active always and now because of this disease process I can't exercise or ride the way I used to and I have gained a tremendous amount of weight and don't even recognize myself. Recently I took a 30 day medical leave. I worked out 5 days a week and joined weight watchers and stuck to the plan. I lost NOTHING. I flushed every time but the dizziness seemed to be less. I have started on antihistamines which are supposed to help with the flushing but nothing has changed. The immunologist said that I need to warm up slowly and cool down slowly, don't just stop. I am to the point of giving up. Love that the WW leader said I must be making bad food choices! I worked WW after my second child and lost 50 pounds with ease. This body is not going to let anything go.

I have my second appointment on Friday with the immunologist. She took a bunch of blood. She was sure that my vitamin D levels were going to be very low. I have wavy nails (this is kind of new) and she said that is a good indication of a vitamin D deficeincy. I will be interested to see what else if anything shows up in my blood work. Seems like I either have great, normal blood work or really weird stuff going on. It's always a surprise. I do have a weird rash (also new) on my neck. I'm not sure what is causing it as they have started me on 5 different new meds in the past week so it's hard to pinpoint which one it might be but I'm thinking maybe the antibiotic for the thrush. Who knows. It's always something. I've really been struggling this past week or so with joint pain. The immunologist doesn't want me taking Motrin. I tried Tramadol and itched for the whole weekend, won't do that again. So I've been taking the Motrin as needed. It works and I don't think it "triggers" anything in me but who knows, maybe that is one of my problems. I need to get through a work day though and between the headache, joint pain and fatigue it's pretty difficult.

That is what I thought too. It will be interesting to see what happens with me. I really do think we are on the right track now. I'm hoping that means that I can get back to exercising and riding my horse without feeling like I'm going to die afterward. One can only hope!

Issie, I thought the same about the trilogy. Getting the hyper pots diagnosis and joining this forum is how this new journey began for me. Strangely, Dr. Tinkle said that with Eds patients it's usually regular POTS not Hyper pots and that mast cell issues haven't been proven to be related either as of yet by science but is talked about a lot through "social media". I wonder what he has discussed with my doctors and what my diagnosis will be. I just want to feel better. Kris

Issie, I thought the same about the trilogy. Getting the hyper pots diagnosis and joining this forum is how this new journey began for me. Strangely, Dr. Tinkle said that with Eds patients it's usually regular POTS not Hyper pots and that mast cell issues haven't been proven to be related either as of yet by science but is talked about a lot through "social media". I wonder what he has discuss with my doctors and what many diagnosis will be. I just want to feel better. Kris

I did meet with Dr. Tinkle and an immunoligist. I think we are finally getting somewhere. Dr. Tinkle is going to talk to my rheumatologist and immunoligist. They did check my biopsy for mast cells and did find some. I'm not 100% sure what that means. They did allergy testing on me and I have no allergies which makes all od this more interesting to me. I'll let you know when I hear back from Dr. Tinkle. Thanks for checking on me!

They have been treating me as autoimmune but I'm still having issues which is why we are looking at other avenues. The EDS stuff only came about after going to Mayo and getting the hyper-pots diagnosis. Then things started to look a little different.

Hi Naomi, UCTD is diagnosed when you are absent of positive ANA but have several criteria for autoimmune issues. I for example, have the butterfly rash of Lupus, the GI symptoms of Scleroderma, the dry eyes and mouth of Sjogren's... so I have a little bit of each but not enough of any to be able to give a diagnosis. Many times they will call it UCTD with characteristics of ______(sclero, lupus, sjogrens). Raynaud's can be primary meaning that the is no underlying cause. Sometimes people who smoke get Raynaud's. Many times though Raynaud's is secondary to a primary autoimmune condition. It is very often seen in Scleroderma and Lupus. I have the full blown version of it which is quite dramatic, all 3 color changes. Yes I have livedo reticularis. I get it when I am cold. It is often seen with autoimmune issues as well. I have tested positive for cryfibrinogen in the past and have been diagnosed with cold urticaria so my body HATES the cold all of a sudden but has also decided that it detests heat as well as of this past summer. It's all very confusing. Hope this helped answer some of your questions.

Thanks ukwildcat! What I liked the most was that even if he doesn't diagnose me, he really wants to know what the heck is going on. He pointed out that I have been worked up by several major institutions and there aren't two of them that agree...it's time to figure it out and I think he's the guy who, with the help of my WONDERFUL rheumatologist at NW will do just that! I wouldn't second guess your appointment. They say things happen for a reason. If this doctor worked with Dr. Tinkle then he is aware of the disease and hopefully will give you the help you need. I will keep YOU in my prayers that you get some answers. I will let you know as soon as I hear something more. Please let us know about your appointment as well!

Thanks. I just read about midodrine. It doesn't seem like the medication for me but who knows. I would definately see if you can get in to see him. He seems really caring and kind. I honestly think he will figure this out for me.

Thanks Sue! I'm very happy with the way things went. The tough part is the waiting as it seems as though it may take several weeks to sort through everything. He said he will for sure have an answer for me before I see my rheumatologist next in April. So now I wait....

Thanks Chaos! I'm so glad that I went and so happy that it all happened while I was off work. Dr. Tinkle said he thought taking the 30 days was a great idea.

Hi, Sorry to keep you in suspense. The appointment was out by my mom and gram's so I stopped there and visited and went out to dinner. So when I got there I met with his genetic consultant Kelly. She was very nice. She was thrilled that I came so prepared with my family history, my history and all my medical documentation. She asked me some questions and then talked to Dr. Tinkle while I waited in the exam room. When Dr. Tinkle came in and introduced himself he was, as everyone has said, very kind. Right off the bat he had some questions that bothered him. He wanted to know about the UCTD (undifferentiated connective tissue disease) diagnosis from Johns Hopkins. He wanted to know why they changed it from Scleroderma to UCTD and what made them think it was autoimmune in nature. I explained that with Scleroderma you should have abnormal nailfold capillaries as well as positive ANA. My ANA came up positive only once and it was a VERY low positive so they don't really count that. Even though I have Raynaud's I do not have abnormal nailfold capillaries so it isn't considered Sclero. The Raynaud's was another issue. He said normally that too is connected to an autoimmune disorder which EDS is not. It is not unheard of for EDS patients to have some AI issues but he wants to make sure we aren't overlooking anything. He said had he not seen the UCTD and Raynaud's that he most likely would have dianosed me with EDS just on my medical history but that he is hesitant to do so until he looks further into my very involved history. I am definately hyper-mobile so that part was easy. He said he may want to see my children who are also hyper-mobile just to strengthen his diagnosis if he decides to go that route because then we have me plus two family members. He said that he thinks that I have mild scoliosis which is news to me. He said from the top of my spine to the bottom there is about an inch and a half difference where it shifts over...hmm He said I am very flat footed. I showed him the prominent veins across my chest and shoulder area as well as my vericose veins in my legs. He noted the bruises on my arm and asked if anyone was hurting me at home lol, I told him no, just my dog! He is very interested in calling my rheumatologist and picking his brain. He says he thinks that they are on the same page as far as thinking where this is going (he didn't elaborate). His biggest concern was that we don't overlook things and slap me with a label of EDS without making sure there isn't something more going on. He also plans to call the immunologist that I saw last week and ask her why she doesn't think it's necessary to do a bone marrow biopsy for mast cell. He wants to talk to her about a drug called Midodrine? Supposed to help with the vein issue and circulation but is concerned about my high bp. The best thing was that he said he planned to take the weekend to look very carefully into my history with all of the info I gave him and see if we aren't missing anything. The fact that he is willing to call my doctors and pick their brains and not just jump to a diagnosis makes me really happy and that he will look at things over the weekend! Goes above and beyond! I truly feel that doors have opened for a reason and I'm finally on the right path!

Sitting in the waiting room at Dr. Tinkle's. Fingers crossed that I get some answers!

Thanks Lel! I have an appointment tomorrow with Dr. Tinkle! Hoping to get some answers.

Thank you wildcat! I have spent the day today sorting through medical records and typing out a family history as well as my own history. I am hoping that I have included everything that he will need. They told me that they want me to include any reports of MRI's, echos, uryodynamics (bladder eval) . I included my reports from Mayo and Johns Hopkins as well as the letters that my rheumatologist had sent to get me evaluated at both Mayo and JH. I didn't include any of the GI stuff. Do you guys think I should? Can you think of anything else of importance that I might have forgotten?

Hi tachy, Thanks for the info. The articles are interesting. I wasnt taking a nasal spray so I have no idea where the thrush came from. I am seeing a geneticist Thursday. Hopefully he will have a diagnosis for me.