arizona girl

Hey Rich how are you?

My go to treatment for yeast is extended 14 days of diflucan. I try to add probiotics, but seem to be having a problem tolerating them, even the non dairy kind. I'm still experimenting with them.

Diflucan works like a charm for me. I also had an antigen test where they check my response to yeast, and I had no response at all. Healthy people get a red welt. It just confirmed for me that the cvid diagnosis was correct.

Thank you Rach for posting the true cause of his death. Pots is a syndrome that can be caused by many conditions, sadly some of them are life threatening, if left on treated.

This is why it is always important to rule out as many causes as possible.

I have a compromised immune system along with autoimmune diseases that damaged my small fiber nerves causing autonomic dysfunction. We are now treating my complex medical conditions and I have had some improvement in my hyper pots. Sometimes small fiber nerves can recover depending on cause. I will have to be on treatment for life however, as what I have has no cures yet. There are good treatments available though to help me manage my diseases.

With a suppressed immune system and the type of autoimmune diseases simon had a disease like meningitis could have easily become unsurmountable. It sadden's me to know that had, he had earlier and/or a proper diagnosis he may have survived this. I hope his friends and family take up his cause and educate where the failures were in his case.

I urge all of you to rule out a cause seriously. I won't lie getting a proper diagnosis was difficult and took many years. That is why in spite of managing my illnesses, I am still giving my time to Dinet. Dinet helped me figure out what was wrong. If I can help one person get there faster then I, it would make my struggles worth it. Take care all!

Michelle,

Not eating for a week and not drinking enough fluids alone would mess up any one's hr/bp. Your body is in starvation mode. Please I encourage you to eat something. A crossiant is high in fat and may be harder to digest after a week of no food. I'd start with chicken broth, mashed potatoes, or nuke a potatoe. You've got to feed your motor.

If you are having trouble eating, maybe go see a gi doc. I see you did have a rupture. I had one too! Did they figure out why that happened?

Please go to dinet's web site, link at the top of this page. We have a physcians link there.

Hi guys, I would never have known this if my lab tests hadn't shown it and doctors hadn't figured it out, but you can have have both a hyper (autoimmune) state and a hypo (immune deficiency) happening at the same time. My doctor explained it to me like the immune system is a circle and once one part is effected it can effect any other part and you can tend to get clusters of immune issues. Hey my bp/hr swing high to low too.

Charlotte Cunningham Rundels, MD, back east is on the front lines of this research. Her published works are very interesting to read. You can google her and cvid and they will pop up. She is also looking at defects in several genes as the cause of this.

I also rarely get the respiratory illness, as my iga is still functioning, but my igg and igm are not so I get other types of infections, like mono, ear, gi, tonsilitis (removed at 21) fungal, bacterial, and chronic yeast/bv. I was running this very low grade fever and felt like I was fighting something for years, it was never high enough to alert a doctor. Once we diagnosed the cvid, it all made sense, as you can't mount a proper fever if your immunoglobulins are defective.

Since we have been replacing my immunoglobulins, my infection rate and the low grade fevers have almost stopped. My baseline temp though is only about 97.5, so at 99.2 I feel like I have a fever. I've only had two infections w/high wbc since starting replacement and we quickly treated that with rocephine shots to knock the infection down. The shots work fast and don't put the antibiotic directly in the gi track. I still do sometimes have to treat for yeast after. If I don't have the antibiotics though my wbc continues to rise. If we don't treat it early, I could get an infection that I would not be able to fight off and I could die from the infection.

My doc gave me a standing order to check my cbc when I feel like I'm fighting something, because I don't get the normal signs of infection.

Ach, have you taken the opportunity to read the resources available on Dinet's web site. The link is at the top of the page before the forum links.

Much of what your asking can be found there. We are in the process of updating Dinet and will be updating some of those pages, but what has already been provided is still acurrate and true.

I found my cause by reading under the mechanism and causes section. I turned out to have Small Fiber Neuropathy and immune issues, which caused my pots.

I agree with you figuring out and ruling out potential causes is important. If you haven't already you should get a full copy of your medical records from your hospital stay including all doctors who treated you and all labs. See what they tested you for? That way you will know what they ruled out.

It is quite common that doctor's that don't understand the full impact of pots will not look any further and will just attempt to treat symptoms. This is especially true of cardiologists once they have ruled out any cardiovascular causes.

With your pain I would consider seeing if you can find a neurologist that specializes in autoimmune neuromuscular disease. I see one in arizona at Phoenix Neurological, perhaps you could contact them ask if Dr. Levine knows any one in your area.

Right now you are at the start line and there is so much for you to still learn. You will get it figured out, just be prepared that it may take time to find the right providers that can diagnose and treat you. You will get there though as long as you stick to it.

Looney, Have they checked your son yet for small fiber neuropathy? Skin biopsy and/or qsart can find it. This type of neuropathy can cause autonomic as well as sensory neuropathy. It is often found in patient's who are diabetic or have autoimmune diseases as well.

I have it and I had a lot of body pain.

I've had one flu shot and had a very painful site reaction. That was before I found out I had CVID immune deficiency. Flu shots don't work on us because we aren't able to produce a response. Which is why I probably had a site reaction as I my body couldn't fight off the stuff in the shot. Fortunately it was only a local reaction.

Surprisingly, and I hope I don't jinks myself. I don't get flu or colds very often. I'm a bit anal about touching stuff in public though and I'm home mostly so I'm not being exposed.

Hey all,

One thing I've noticed after going to a few of the research centers like vanderbilt, ucla and even mayo. They all have their research theories they are working on. So if you fit their criteria great, if you don't not so good for you, because they don't know what to with you or even want you.

For example Yan Go at ucla is really studing sleep disorders and wouldn't do a tilt table on me. She was though the first one to have me do the poor man's tilt at home. After doing that a few months, at my follow up, when she found out I was going up on standing. She said I needed to go to mayo that I could have something scary like even cancer. I know now she was referring to carcinoid syndrome. Which my local neuro ruled out. She did point me in the right direction, but wasn't able to work me up herself.

Vanderbilt is really studying the salt loading and volume issues, and though my valsalva showed I went up, they didn't address that, didn't do a tilt as I expected, but based on my history started me on the salt protochol. Which didn't help me at all.

By the time I made it to grubb, I'd finally had a tilt done locally and with that had been referred to an autoimmune neuromuscular neurologist who did my skin biopsy which came back positive for small fiber neuropathy the cause of my autonomic dysfunction. I had this info for Dr. Grubb and he asked for the catecholamines to be done. He diagnosed hyperpots due to sfn even before the lab confirmed it and agreed with my neuro's diagnostics. He is so far away I have not made it back to him, but am still on labetalol he prescribed. My care with my neuro eventually showed I had an immune deficiency and with further testing I also have autoimmune thyroid, skin and a lupus like autoimmunities. I have been improving some what with my new treatment plans, we are still tweaking though.

As you can see my pots was a result of several secondary causes. This was a long (years/decades) and difficult journey, but I stuck with it. I admit though I did give up a few times only to get worse and have to get back on the horse again. I also read everything I could on dinet, which helped me figure out where I needed to look.

So I encourage you to trust your own instincts. Read everything you can. Discard what doesn't fit you. A doctor doesn't always have it right. Had I stopped with salt loading and not looked further, I would not have gotten to treating my underlying causes, which are pretty significant medical conditions.

While I wish I wasn't sick the validation of knowing I'm not crazy and there really were some signficant medical conditions, has lifted the stress and need to prove there really was something wrong. As many of you, "I don't look sick" and I'm fairly intellegent and have an upbeat demeanor. How could some one that looked and acted like me actually be sick!! I'm proof you can look good and still be very ill and still have a working mind. I am now getting the care and treatments I need.

Hope my story helps you, get there faster then I!

I'm in chandler south of the chandler airport and the supertarget. There are enough of us on here from az now we should start a local support group, like Jana has down in tucson.

You probably don't know this yet, but I'm the new Board Secretary for Dinet. Rachel asked me if I would consider the position and take over some of the e-mail and administrative stuff, so she can focus on Dinet's other needs. I was so touched and honored that they asked me.

I'm so excited about the direction Dinet is going in.

Yahoooo! I'm so happy for you Dani. I hope it is an approval. Sure sounds that way, and that you have your checks soon.

When it's official, we should go have an arizona celebration get together. With our fellow azer's. One of these years we are actually going to manage to get together.

Such good news!!!

Yes, I was told the same thing about steriod pain injection shots. I have hyperinsulinemia/metabolic syndrome/pcos. I also have hashimoto which in and of itself causes a rise in cholesterol. That was how we finally figured out I had hashi.

Everytime I'd get a shot it would cause weight gain and my metabolic labs would soar. The same thing happened when I first got sick and they put me in dexamethsone and years later when an integrated doc put me on dhea. They are all steriods and steriods do have these side effects.

It is why they are going towards more steriod sparing medications when treating autoimmune diseases now.

Amy, do a search on it the posts. Others have been there with somewhat mixed results.

Traci, I don't know if you noticed but Jenn hasn't been online since July. She was very ill and I hope things didn't get worse. I always worry when a member like her suddenly drops off.

Why don't you pm your question to her and see if there is a response.

BTW I do go to a chiropractor. Mine also offers massage (no tip required) and I can use my fsa account to pay for it. I recently went through (pt) physical water therapy and got worse. Recently found out I'm hypermobile and was probably pulling my hip out with the water resistance. Anyway my chiro didn't just adjusment me, he did some pin and stretch techniques on my hip flexor muscles and calmed the whole thing down after a few visits.

I'm still struggling to figure out how to do exercises without hurting myself. My rheumy doesn't want me in the water and wants me to do isometrics and 10 minutes of cardio on a seated bike or such, and to work up one minute a week.

Also becareful what chiro you go to, they are not all good.

Hmmm, interesting. Did I answer your previous question?

You do know that pheo's can be very small and still cause problems. If I were you I would get retested for everything, 8,000 is really high and the fact that you aren't syncopying may suggest that it is high even when you are supine. I had my supine and standing cats done at sonora, just go in before your test and ask them if they have a room with a bed and print out the labtest online protochols for it and give it to them to follow. Ask for an early appointment and come back. It is important to be very relaxed before the supine part, I'd get there early and lay back in my car before going in.

I think too pheo's don't send out hormones 24/7. So, your mets may have just missed it. Sounds like a second or third opinion is in order.

So, are you saying that exercise is managing your symptoms. That might make sense as exercise would probably burns some of that norepi off.

If your bp/hr aren't changing posturally, I'd think about bp meds to lower it, in that case labetalol might not be the best choice. I think if you google treatments for a pheo, there are bp meds that are used to treat it before considering surgery. Surgery is currative though it is a bit of a scary surgery. Well those are my thoughts, hope they help.

Hi puppy,

Glad you got through your scope okay.

I wouldn't say that pots causes immune problems per se. More like pots could be a symptom of a comprimised immune system. Fighting illness and infection often results in an elevated heart rate.

There are some pretty good tests that can check to see if your immune system isn't functioning right. One area you can check is to go back and look at your cbc's and see if your ig/ratio found in the cbc is abnormal. Then there is a test called a total quantitative immunoglobulin, a sub igg panel, ige, igd and if any of those are abnormal a test called a vaccine challenge.

Fortunately for me we finally figured out that my immune system is completely screwed up and it explains to some degree why I have so many autoimmune illnesses. I have common variable immune deficiency, which has an association with autoimmune diseases I have like hashimoto, lupus like, lichen (skin), I have pcos which is caused by elevated insulin so that is another endocrine issue and I wonder if my whole endocrine system is under attack, I do have a small adrenal nodule too. I can't help but feel they are all related.

It appears that my form of dysautonomia Hyper pots (bp/hr rise) with near syncope/syncope is a result of my body attacking my small fiber nerves (autonomic nerves). Skin biopsies of my various tissues have been diagnostic for sfn, lupus and lichen. I also recently found out I had a genetic mutation called mthfr that interrupts the ability to process folic acid. I'm still working that up and trying to figure out if that is an underlyer to the other things we've found. Treatment for this surprisingly is simple, you treat with an active from of folic acid called methylfolate.

The good news after living this way most of my life we are making progress with my treatment plan. I am so hopeful for you that this all gets figured out for you while your young and you get more of your life back. I often wonder if I would have gotten as progressively sick as I have, had I had earlier intervention.

I am so rooting for you that you get to a good treatment plan faster then I. Take care sweet girl.

If you want to read up on immune diseases, you can go to http://primaryimmune.org.

Hey potluck,

Well I'm hyperandregenic diagnosed by Dr. Grubb and confirmed with a supine/standing catchecholamine test with an almost triple rise in norepi on standing. However I also at times was waking with hypotension. So I was really swinging. I don't even worry about my dystolic being in the 90's, as it used be much higher, so I think 90's are good for me. My dysautonmia is due to small fiber neuropathy and probably hashimoto thyroiditis and other autoimmune issues. I've treated the nerve damage and immune deficiency I have with IVIG and that helped correct my swings somewhat and now after in the t4/t3 thyroid meds it is even better.

First though does htn mean hypertension? My next question is does your distolic drop when you lay down. I guess I need to know what your bp/hr are doing posturally supine and standing. Do you have a documented rise in your norepi? Also to be clearer have you ever had a syncope or a near syncope?

Having asked all that in my case Dr. Grubb told me he tends not to treat patient's with hyper pots/dysautonomia with salt loading. Vanderbuilt had prescribed it for me and it didn't do much for me symptoms wise. I tend to run low on blood sodium so I do eat some himyalian pink salt, but the low salt may be due to my messed up endocrine system and or burning through it because of the elevation in norepi.

Dr. Grubb prescribed me low dose labetalol it is an alpha/beta. So, I am treating with hypertension meds labetalol lowers both bp/hr. It is short acting so I take more if I'm having a bad day and less on good days, sometimes none at all on real good days. I also never take near bed time as I drop naturally on my own.

So thats my story, hope it helps you.

I don't live in a small town and I have aetna insurance, but when I needed to find a home health agency, I contacted the neurologist I saw near by and asked who they used for their home health infusions. Sirona is who they use and they have been great.

Maybe ask your local doctors or even the hospital who they use for home health when they discharge their patients who still need assistance.

Hi, Unfortunately, I've had to do it several times. Your asleep during the indignities, so you won't remember that part.

They have newer contrast mediums to drink now, they aren't all chalky anymore. Maybe arrange to get a clear one, they still don't taste great but are easier to get down. Maybe ask if you can start that part a little early so you have more time to get it down. The preprep to clear your gi tract also taste better too, ask your doc for one that is easier to get down, a clear colon is very important for these test. Be prepared to be very close to the potty, you will have few dashes during the process.

It is important to talk to the anesthesia doctor before hand to let him know about your autonomic dysfunction. It is more expensive but I have to have mine done outpatient hospital.

I also have to let them know that my hr/bp drop during a procedure like this, so they are prepared to handle it if it happens. If you get those symptoms as well you might want to let them know and see how they handle it if something like that should occur.

Hi all, Some of the symptoms you all are describing could be attributed to a primary immune deficiency. Primaryimmune.org is a good resource for more information on these conditions.

If you suspect you might have this and have many recurrent infections, I would be screened to rule it out, as not treating this illness could eventually lead to an untreatable infection.

I have common variable immune deficiency and am now being treated for it. The primary tests to determine if you have this is a "total quantitative immunoglobulin" a sub igg test, Ige, Igd and then a vaccine challenge test.

It treat with privigen ivig and shots of rocephine antibiotics when I have an infection on board. The ivig has reduced my infection rate and helped somewhat with my neuropathy.

Any infection will make your pots symptoms worse, as your body is fighting harder then usual. In my experience pots is usually a symptom of some other illness not the other way around.

I have some concerns about DHEA and why or who is prescribing it for you?

I was given the presciption form of it by and integrated doctor, when I first got sick for supposed "fibromyalgia". It does not promote weight loss, and if you have any type of metabolic syndrome, like pcos, high lipids, etc. it is like throwing gasoline on a fire. It is a steriod and functions like prednisone, which causes weight gain.

Where did you hear it causes weight loss? If you are having a weight gain problem, there are many things to look into as to why that is happening, before adding a hormone in like dhea, in my opinion.

I've been taking some form of glucophage for it for years now, it lowers the insulin levels, cholesterol even and will start ovulation again. I lost 25 pounds without trying when I first went on it. I now take glumetza it is easier on the gi track then plain glucophage.

The weight gain without eating anything "classic", that was how I knew something was wrong, I didn't eat much either.

You have a good doctor who thought to check the insulin, many still don't know to do that. Hope they get you on treatment soon, it will make a huge difference. I also avoided taking birth control pills, which used to be the way they treated it, it can help pain symptoms, but does nothing for the underlying disease state.

Good luck with all this. I'm happy you found out!

Hi puppy, I've had pcos for years and did not get diagnosed until much later in life, it is part of the reason I have no children. Had I known sooner perhaps that would have been different. It is fortunate that you have found this out so young, as the available treatments can manage it very well and keep the more severe infertility issues from progressing.

May I ask how they diagnosed you, what tests you've already had done and what your symptoms were? PCOS is caused by excessive insulin and/or other abnormal sexual hormones. IMHO, yes it can contribute to dysautonomia and or disrupt other balancing hormones. Insulin is a stimulating and fat storing hormone, and when it is high do as much damage in different ways, as high glucose does in diabetes. It also predisposes you to diabetes and cardiovascular disease.

I'm happy to help you through my experience in any way that you need. Take care.

Sorry, giraffe, it's always such a let down when normal comes back!!! Isn't pandy's a diagnosis that has a treatment plan on it's own, why do you need to keep looking for cause in order to treat. We have had several pandy's patient's on here over the years and they were getting treatments like pheresis and ivig, and improving with them.

Another condition to consider is cidp another type of neuropathy. All of the neuromuscular diseases mentioned are treated in similar manners. MS, has some newer choices.

I've given up and then been forced to deal when things got worse. Exhausting, Yes!! Doing nothing though and hoping it will go away are usually just wishful thinking. Stay strong, you will get your answers if you don't give up.

Well I'm not new to dinet, but it looks like I'm hypermobile too, though I had the vascular test ruled out years ago. Just saw a genetic doctor for another reason, but this issue came up, and it appears I have it, I just don't know what kind. We only briefly touched on it and she mentioned avoiding yoga, and high dose vitamin c in the future. We are going to deal with my mthfr gene defect first.

Katy, I'd also love to know who your doctor is and the testing information, I'd like to shoot that to the genetic doctor I saw and will see again in the spring. All the other tests you mentioned have not even been suggested to me yet and would seem to be very useful. I've had many tests, but none of those.

When you get through all of them, I hope you will share with us the results and treatments. It sounds like you've got a real good doctor on your team. Consider sharing her name and location with the forum members.

Take care all, and wishing you all a good journey with your new doctors.