Saw The Rheumy And Immunologist This Week. New Plan

[Kris4444]

They Rheumy was ok with what the EDS doctor and Immunologist have diagnosed. He said now that he has seen me and spoken to me in person that he wants to contact the EDS doctor to discuss my diagnosis' over the phone rather than exchanging emails like they had been.

I brought my husband with me to the immunologist so that he could meet her and maybe better understand her treatment and what it is that I'm going through as he seemed a bit reluctant to buy into anything we are trying to do. I also brought pictures of the flushing after exercising so she can see that her current treatment of drugs is not working for me. We spoke for quite a while and are going to do several things differently.:

1. ALL of the doctors agree that I am on so much medication right now that it's difficult to figure out what is helping and what is just making my symptoms worse. After talking to the immuno today we decided to start weaning me off the Pristiq which is an SNRI that I take that helps with my colonic inertia. Having high NE and taking an SNRI has the potential to make my flushing worse when I exercise. The goal is to get off of it completely just to see if the worst of the symptoms (flushing and terrible vertigo) get better when i exercise. Unfortunately it may make me get to the point where I have to do bowel preps on a regular basis. I can always go back on but I need to know if it's making the hyper pots stuff worse.

2. Get off the Losartan. I take this for my Raynaud's attacks and the immuno believes that it may also intensify the flushing. I am currently taking it twice a day. Now that spring is here I don't need to take it as often for the Raynaud's so I will cut that one down to once a day. As long as my bp doesn't rise I may be able to get off of it completely.

3. She is starting me on Valtrex immediately for the chronic EBV. This may help with the terrible fatigue.

4. We spoke more about IVIG therapy. She informed me that there is a protocol that they have to follow in order for insurance to cover it. My IgG's have to be less than 700. Mine are 725 so that makes me borderline. She said that she is going to take blood again next week to see what the pneumonia vaccine did for me. She said that blood work is really just a snap shot in time and that the second that mine goes down closer to 600 she will submit my info to insurance for IVIG. She really feels that this will make me feel so much better.

5. We are going to continue on the Xyzal and Singulair for now and see if her meds have a better chance of working once I get off some of the medications that can cause flushing.

I was dissappointed that she is still so against a diagnosis or treatment or testing for MCAS. She still holds true to the tryptase levels being low. She said regardless that my mast cells are out of control but they are "twitchy" not overproducing. I asked about GastroCom and she said I could try it if I want but that she doesn't think it will help me.

I am willing to try her plan and see if it works.

[issie]

Hope things work out well for you. Nice that you will be able to try the GastroCrom - should you decide too. Keep us posted.

Issie

[Katybug]

Sounds like everyone is working toward trying things until you find a tx plan that works for you. That's so important. Let me know how it goes!

[Kris4444]

Thank you. I hope that we are on the right track. I started Valtrex today for the chronic EBV. I still feel that the EBV is what started all of this. I am holding out hope that this will make things better. I know it's bigger than just EBV now but I'm still hoping...

[Chaos]

Hope the valtrex helps too! I'm still doing high doses of Famvir (another antiviral) in hopes it will prove helpful in decreasing viral load and thus improve overall immune function. Still think a virus triggered my symptoms as well.

When you said your IGG's needed to be below 700 was that for your total? Or was she referring to specific subclasses?

[Kris4444]

Hi Chaos - I believe it was my IgG total that needs to be under 700 and I'm 725. She said the closer to 600 you get the better to qualify for the IVIG. If my system responds properly to the pneumonia vaccine then my IgG's will have gone up.

She really stressed that the IVIG would make me feel so much better. What ***** is that you have to do it for the rest of your life or you will go back to feeling terrible again. That is why insurance is hesitant to ok it. It's costs them around $5,000 a treatment I guess...

[Hope]

I also feel the EBV started my problems. I have never been the same since I had Mono when I was 14 or 15. Are you taking that Valtrex everyday? I take the generic of Valtrex for my cold sores and often wondered and even mentioned to the doctors about possible taking them steadily because even though they make me sleepy, after I have taken them for a few days I feel improvement over all. I feel stronger for a short time. My neurologist had given me another long-term antiviral to try (amantadine), but it is a stimulant and my cardiologist wants to keep my heart rate down so he told me not to take them. Now the Valtrex does not raise my hear rate. PLEASE, let me know if you are taking these daily and I will bring it to my doctor again.

[Kris4444]

Hi Hope-yes she prescribed the 1 gram dosage twice a day for 10 days then one pill a day doorv a month. Then she wants me to stop taking them for a while and only go back on when I feel that my EBV is reactivating. She said this is the only drug for EBV and she does not want me to build up a tolerance to it.

[Hope]

Thanks Kris, yes I would be worried about building a tolerance to it.

I hope you have a turn for the better soon!

[issie]

4. We spoke more about IVIG therapy. She informed me that there is a protocol that they have to follow in order for insurance to cover it. My IgG's have to be less than 700. Mine are 725 so that makes me borderline. She said that she is going to take blood again next week to see what the pneumonia vaccine did for me. She said that blood work is really just a snap shot in time and that the second that mine goes down closer to 600 she will submit my info to insurance for IVIG. She really feels that this will make me feel so much better.

I just looked up my IGG levels I'm at 654 and low on the subset 1 level. So, I guess that could be a big player for me. I was so hoping the LDN would have worked ---but, it didn't. Threw me into a major depression that took awhile to come out of. I've been offered plaquenil. Anyone using that and what's your experience with it?

[Kris4444]

Issie I have been on Plaquinel 200 mgs twice a day for years. I know it has helped with the weird skin rashes and things. I have a special eye test done once a year. So far no problems.

[Psalm 23]

I have been on Plaquenil 300mg daily for the past 5 years without any problems. It was prescribed for lupus and has primarily helped me with rashes and joint pain. Like you Issie I tried LDN for 6 months. First at 3 mg then increased to 4.5 mg. My Rheumatologist said a significant number of his patients benefited from it but I didnt notice any difference at all. I was very disappointed

[issie]

Hmmm! So Kriss - it hasn't really helped with all your issues then? They seem to be addressing autoimmune things with you. Maybe, addressing the mast cell things will be what will be the ticket. What type of special eye testing do they do for you? What are they looking for?

Psalms - do you find that it has a significant help to your pain and do you think it has helped your Lupus to somewhat stay in remission or do you still have flares?

Issie

[Kris4444]

Actually it HAS helped me with the autoimmune aspect of things. That's why I've been on it so long. I believe the eye exam is to check for macular degeneration.

[Psalm 23]

Issie. My lupus has always been mild so Im not really sure how much of an impact the plaquenil is having on lupus related pain any more as my pain level in general has been steadily increasing. I have fibro and possibly SFN (burning feet etc.) but wont be able to get that properly addressed until I get back to Mayo. At present Neurontin and Lidoderm patches are what is most effective at helping my pain. I did have low GFRs back in 2011 and I only have one kidney ( I had a left radical nephrectomy due to tumor) so my Rheumatologist says just keep taking the Plaquenil. My joint pain is pretty minimal as compared to my other pain issues. I think one significant benefit of being on Plaquenil for me is rash control. I had been afflicted with the most horrible scalp rash that disappeared after six weeks of treatment. I do still run low grades fevers but when one ends up with so many different coexisting conditions its hard to tell what is being caused by what.

[issie]

Thanks for the response on the plaquenil. Right now we are attempting it with herbals, but holding that in reserve. Since there are eye issues that are genetic in my family - I'd really rather not take the chance with my eyes. But, we will see how things go. I think what I am doing is making a difference ---so that's a positive sign.

Sorry, you girls are having all these issues. It seems we all are so complex. Hard to know which direction to go sometimes.

Issie

[Kris4444]

Psalm what is SFN? I also have Fibro and get the lupus rash as you can see in my picture. I have UTCD...the plaquinel helped me with rashes too.

[Psalm 23]

Kris4444 Its Small Fiber Neuropathy. Im so sorry for all you are going through. I know how frustrating it can all be. I am an optimist and am always hopeful that something new and helpful is just around the corner. At times though I simply put my situation in perspective and am thankful that things are not worse than they are. I had lunch with some girlfriends yesterday. One of them, the youngster of the group at age 44 has been bravely battling metastatic pancreatic cancer for the past year and a half. I cant even begin to imagine what she is going through.

Issie If you can get some results from an herbal remedy I think that is great. Any nonpharmacological approach is always the best. I can certainly understand your eye concerns and plaquenil.

[Lethargic Smiles]

I came across this thread by searching "mono". I just had some questions for you guys to compare our experiences -- answer what you can/feel like. Like someone else here, I get low grade fevers and this was one of my first signs something was wrong after mono. I still was getting fevers as well as swollen glands/sore throats.

Did those of you treating chronic EBV have a EBV DNA profile (I think that is what it is called)? It isn't the antibody test, it tests for actual levels of EBV in the blood.

Did EBV/mono trigger your POTS? In my case there were always signs, but nothing that kept me from living life. Mono set it off.

Ever since then, my throat glands, and even armpit/stomach glands swell. It seems as though my lymph nodes are a measure of how exhausted my body is. The more I do, the more they swell. It gets bad enough where I avoid any clothing touching my armpits. It can be felt, but it isn't typically large enough to see. Do you guys get this too?

My throat hurts often and correlates with how much I've done in a given day/group of days. I've found an antiviral supplement called Andrographis. It seems to be helping. I didn't know if it was or not, but when I forgot it for 3 days in a row, my throat hurts so, so much!

[Kris4444]

My temp stays low around 97. I feel feverish all the time though. I don't get the sore throat often. I do get swollen under my armpits at times.

Not sure about the EBV test. They test my titers every month for the IgG and IgM. The IgG one is greatly elevated and has continued to go up. (Lab value 0.00-0.90. Mine is 6.65)

[Chaos]

Jackie M- I had the DNA Real Time PCR test for several different viruses done by the immunologist I see. Mine were all in the normal range although my titer levels for several viruses were really high. The doc (who specializes in viral infections) said that he didn't know that the PCR tests were all that meaningful as they are finding the viruses in nerve, brain, bone marrow and cerebrospinal fluid more than they are in the blood. He said if they had done the tests using those sources the results might very well have been different.

The swollen glands and sore throat are classic signs of ME/CFS following mono. Have you looked into that? Not a diagnosis most people want to get, but there is a lot of exciting research going on in the area now so might be another path to explore for you.

[Lethargic Smiles]

Thanks for your responses. My case is a both familial POTS (my sister had it) and post viral because I didn't have it until a bout of mono. In my sisters case, we believe some things in her life triggered it (high school girls can be so mean) and in my case it would have been the mono. My diagnosis for a couple of years was CFS, but then when they found POTS, they dropped the CFS. I honestly don't mind not having the label since they still give me meds to help with fatigue and they don't do anything for it really. I will definitely be keeping my eye on the research though!

That's very interesting about the helpfulness of the PCR tests. Mine was also normal. I'm convinced I have EBV hanging out in my lymph nodes. At Mayo, when I inquired as to what the dr suspected caused my lymph node issues, he said possibly a virus going between dormancy and active depending on my immune system's state. It surprised me he said this because most doctors don't jump to that first. When I overdo it, the throat pain becomes pretty bad. I save spit because I hate swallowing although with andropgraphis, I often don't have to do this anymore. I've had strep go to my kidneys because I don't notice extra pain from it. Sometimes the lymph node swelling requires steroids. I just never pushed anything with doctors after the antibody test not showing an active virus and the PCR being normal. I don't know that there's much to be done so I don't really know if its worth pursuing although if I choose to, I have an open minded PCP and a VERY open minded immunologist.

[davecom]

Have you had the neuropathy biopsies, QSART and such related to the POTS? I was evaluated today by an ENT for similar throat pain. She is doing a lip biopsy next week for Sjogren's (would explain everything including the neuropathy, POTS, etc) but her diagnosis of exclusion is neuropathic damage similar to that which caused the POTS.

[Chaos]

Jackie M- Don't want to hijack Kris's thread. Will PM you.

[Lethargic Smiles]

Yes Kris, sorry for hijacking your thread! It brought up some interesting subjects. Dave I've had the full workup looking for neuropathy (thermo sweat test and QSART) and all is good. Thank you for the suggestion and I hope you find some answers.