JimL

22 minutes ago, AnewDay said:

After The Infection and antibiotic treatment   Is that about when it started?

    I think the gut is responsible  for a lot of these problems that we have and things like antibiotics can probably throw a wrench into it as well the biome gets thrown off that leads to all kinds of problems to I guess but I'm not a doctor.

I think you  will get better.

   

The POTS started months later. I have a post with my history in the forum. 

32 minutes ago, AnewDay said:

Sometimes it's triggered from eating it just feels like some thing irritating me when I breathe I'm aware of my breath;

    when I have a flare up and it's bad and I'm trying to sleep it's very very very very bad I'll have to at times make myself breathe consciously.

    It's very hard to sleep because  right when you're about to go to sleep you stop breathing  it's very hard to explain.

      Zinc carnosine has changed my life,   

 my orthostatic intolerance as improved starting to go for walks and run in fact about to go for a jog in a few minutes,

      I believe my orthostatic intolerance it's caused from an autoimmune condition of some sort     related to gut permeability anyway God bless I'll be back in about 2 hours 

 

I had an H Pylori infection last year that probably wasn't treated well. Things have gotten worse from there. 

26 minutes ago, AnewDay said:

I read that it might in some people  lower blood pressure, but I also read it improves the function of the parasympathetic and sympathetic system,   I measure my blood pressure daily because I have a drop in blood pressure when I stand and since I've been taking zinc carnosine it's improved a lot  so much so that I don't want to jinx it by talking about how much it's improved but it has.

   Now it could just be because there's less inflammation on my gut so less overall blood pooling and so that could be why I'm seeing orthostatic improvements.

       I think it's important though to look up everything you can about it because it truly has been a miracle for me personally.

             The brand I use Doctor's Best PepZin GI, Zinc-L-Carnosine Complex by the way.

       

If it works great. Just wondered about that as a drop in BP could exacerbate it. I wish there were more studies into supplements, but that industry is poorly regulated. 

5 minutes ago, jklass44 said:

The article states that millions of people and a very high percentage of people contract this virus. That generally means it is easy to get. Yes it’s mainly a sexually transmitted disease, but children can get it through skin to skin contact with someone who has hand warts and (more uncommonly) through fomites. 

I’m just saying its something to be aware of in both children and adults because it is so common. We can’t protect ourselves from everything, but vaccines can help. 

" but children can get it through skin to skin contact with someone who has hand warts and (more uncommonly) through fomites. "

The article doesn't say that and the HPV that causes warts isn't the same variant that causes cancer. A lot of people get it because...

My only point originally is to weigh the risks and make an informed decision, part if which is how it's transmitted. The vast majority of people don't get reactions from vaccines, but if you do, it sucks. I mean for all I know I got POTS from the flu vaccine I got last fall or even the DPT the year before. Who knows. I do know the two year I didn't get a flu vaccine in the last 5 I got the flu bad. 

I am sure the parent in this case will make the right decision for her kids. 

One part of the article might make it not a good idea for some of us:

Carnosine lowers blood pressure through vasodilation (opening blood vessels). One mechanism by which it achieves this is by increasing nitric oxide production 

2 minutes ago, jklass44 said:

This article is just reiterating what I said. Am I missing something?

You said it's easy to get. Based on the article, there are limited ways to get it that involve specific human behavior. I am not judging at all, just pointing out the difference. HPV isn't airborne nor can it be spread through coughing or sneezing as far as I can tell. It's basically a sexually transmitted disease. 

4 hours ago, jklass44 said:

HPV is actually very easy to get too, unfortunately. Up to 80% of people will be infected by this virus at one point in their life according to my research. 

I agree, males can transmit it just as easily as females. And I know there’s a hundred things out there that can supposedly give you cancer, so vaccinating against this one will at least knock HPV off that list...

https://www.cdc.gov/std/hpv/stdfact-hpv.htm

4 minutes ago, StayAtHomeMom said:

We currently have the Hep A and whooping cough going around my city. They suspect my oldest son's friend has it. They get the test results back Monday. I agree it is crazy. 

The HPV vaccine only protects from 9(i think is the latest) strains of HPV. There are over 80 stains. To protect from so little, is it worth subjecting my boys' immune system to? I know originally it was for girls, and then they added it to include boys later because boys can transit it. 

Some boys can be affected by it with throat and rectal cancer and yes they can transmit it. Hep A and whooping cough are different stories. Much easier to get. 

1 minute ago, StayAtHomeMom said:

I am not but vaccines have always made me wary. I am fully vaccinated and so are my kids (except HPV and we don't get the flu shot). But I waited until my kids were over a year old before I started their shots. They were never in day care and we're fully vaccinated before they started elementary school. They are homeschooled now. 

I waited because my brother died 3 days after getting his DTP shot when he was 3 months old of SIDS. I know it probably didn't cause it, but there was enough of a question mark there that I waited til I felt the kids immune system could handle it. 

I am personally not an anti-vaxxer and I believe everyone should be vaccinated but the HPV vaccine is relatively new with little evidence that it is really safe. 

During my research last night I found there has been 3 different vaccines used in the US. The latest just started being used in 2016. Most side effects data is about the first 2. 

I thought it was interesting that there was claims it caused POTS so I figured I would post on here and see if anyone had the vaccine and developed it. 

In reading the articles, I had never heard of ASIA. In looking it up, there seems to be some controversy over it. It seems to me that if a doctor can't figure it out, it's in our heads. That said, the incidence of getting POTS from a vaccine is relatively low, but considering behavior affects infection with HPV, it's sort of optional in the sense that HPV requires specific contact as opposed to a contagious disease. I have 5 kids and none of them got the vaccine as of yet. Time will tell. I might be inclined not to get the HPV vaccines, but inform them of the risks and when they become of age they can decide. 

I

6 hours ago, Tenacity said:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5883192/

https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/26425598/

https://www.ncbi.nlm.nih.gov/pubmed/25274229

https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/27638661/

These are the free PMC articles you can read on PubMed about the subject. I haven't read them yet.

In reading those articles, it's interesting that they try to rule out psychogenic factors with regards to POTS/Autoimmune disorders. Is that from a bias based on the inability to diagnose it or that some people really have psychogenic caused POTS or Autoimmune disorders? It seems to me that it might predispose a doctor to presume it's psychosomatic. 

2 hours ago, Pistol said:

Hi @JimL - regarding the salads: since I developed severe GI issues from POTS I had to cut out all fresh vegetables and that meant all vinegar-based dressings as well. This has made a HUGE difference: cutting down those acids and hard to digest veggies improved the amount of acid the stomach is triggered to produce. I had Barrett's ( precancerous changes in the lining of the espphagus ) and that was normal in my last EGD. This has been contributed to both meds as well as the diet changes. STAY AWAY from those greek salads!!!!   

I had an EGD in July and had gastritis and H Pylori. My stomach has gotten worse even though I've done a couple courses of treatment for H Pylori. I'll probably have to have one again. Thing is, before last june, I never had stomach issues. I could drink gasoline and piss ice cubes. No more. I'm on Lansoprazole 2x a day now. 

It's a risk question. With highly communicable diseases, vaccines makes sense. In a perfect world, if your son always practices safe sex or doesn't participate, he has nothing to worry about. Things like polio, measles, chicken pox etc are different. They are indescriminant. That said, people claim lots of things, but is it true? I wouldn't soley rely on anecdotal evidence. They can get the shot when they become of age, so you can leave it up to them if you like. 

On 2/14/2019 at 5:43 AM, StayAtHomeMom said:

Are you noticing any specific foods that are messing with your stomach?

One thing that doesn't are some chips to some extent. Meat/Protein seem to be a hassel. Salads too. God, I used to love greek salads and eat them often. Now I can't without getting nauseous.  I love bacon, but that doesn't work well. It's like my body rejected 16 months of keto and I don't know why. 

On 2/14/2019 at 4:06 PM, StayAtHomeMom said:

Do you have hashi's? You may want to look at a different thyroid medication. I have seen were the one that is actually pig thyroid hormone instead of the synthetic thyroid hormone can be better. I don't remember the name of the medication right off hand. 

Have you been checked for MS? And celiac? You remind me of what my sister in law has and is going through.

Did my thyroid panel:

TSH, High Sensitivity 1.46 range 0.45-4.50 mU/L

T4 Free NonDialysis 1.7 range 0.8-1.7 ng/dL

T3 Free NonDialysis 2.4 range 2.0-4.8 pg/mL

Microsomal TPO Antibody <10 ≤34 IU/mL

7 hours ago, dannyg said:

Thank you everyone ...

Very frustrating for me. Have to wait for the biopsy thursday coming up, them maybe a week from then get some answers. I think I know the answer already though since it has to be the cause of all my other issues like the bowel problem and now Appendix issue popped up. 

I don't have an oncologist yet since they officially havent done a biopsy yet. That will be next thursday. My urologist last time I saw him a week ago when he told me about this biopsy and scheduled it he said "we still have time because it dont look like it spread because it isnt showing up in my blood or urine". That makes no sense. I dont think its a coincidence that 2 months ago a was in great health, then they found the bladder problem, then the next week its my kidneys not working right, then my bowels, then my Appendix. 4 doctors saying each one has nothing to do with the other....  It has to be. Common sense. 

All I can do is hang in until next week and see what happens. 

Im wiating for the official biopsy from my Colonoscopy. I did get an Email with tbe doctors report. He took 3 biopsys of Polyps. 1 said "high grade dyslasia". I looked it up. Dont sound good. By the time they sample my bladder and tell me thats the problem, I think it will be way to late..

I will keep everyone posted... 

 

High grade dysplasia is precancerous. If they removed the polyps, it's ok as far as that goes. I hope things aren't as bad as they appear. Keep us informed. 

 had DVTs in my right leg over 25 years ago and I have worn knee high compression stockings since, or at least up until the POTS fiasco. I used Mediven with silicone band, 30-40mm. Mediven makes sturdy compression stockings. I wear knee high now. I forget the brand as I got them through walgreens, but they aren't the same. I will look at getting measured for thigh high open toe soon. The ones I have now are closed toe, which I hate. 

The thing is, looking at the website, there are a plethora of maladies that can cause POTS and if the underlying disordr is treated, could it not improve the symptoms?  I had a tilt table test this week. Not fun at all. 

There's a lot of bad medicine out there. I am sorry to hear this. Have you challenged your doctor's timeline? I mean it's ridiculous. 

1 hour ago, StayAtHomeMom said:

Dryness could be the thyroid. Itchy depends. My son says his legs get itchy when he stands too long. (He seen my specialist Monday who believes I am right and my 16 year old son has POTS as well. )

You mentioned your T4, are they testing your T3 as well (the free for both preferably) and did the do the 3 tests for thyroid autoimmune? Don't remember them offhand but I could look them up if you want. 

Hashi's is an interesting thyroid autoimmune. It is usually associated with hypothyroidism but you can get hyper symptoms as well. It seems to fluctuate a lot. 

I love the walmartization comment. It made my evening. I don't like having all the specialists either. It works better if they are all in the same system and use the same portal. I know that isn't an option everywhere though. It is nice that my PCP can just type something on her laptop and see my results from my GI doctor's testing. Makes things easier. Unforgettable my neurologist (that is my POTS specialist) is 3 hours away and my records don't float easily. 

They didn't do the full panel. You're lucky today if they do TSH, which really is a pituitary function. Because of the walmartization, they don't like to order tests that might not get paid for and then there is a tug of war who is responsible. You'd think that with the amount of time these tests have been around that things would have gotten cheaper. There has to be a better way. Most of my life I've been against single payer, but I don't know how long the current crap can keep going. They way they want to drive costs down decreases the quality of service. I see more and more doctors going concierge now. The other thing that pisses me off is that I should be able to log into websites to see my test results for things like MRI's and CT scans. Not here. If the results are sent to a doctor and he or she puts them in a portal, that's the way it happens. Since we're the customer, we should be able to have our data as it were. I have to ask for the records and some will put it on a disk for free, some charge. I save everything to cloud storage, even digital communications, everything I can. The best portal I've seen so far is Epic. 

42 minutes ago, StayAtHomeMom said:

Do you have hashi's? You may want to look at a different thyroid medication. I have seen were the one that is actually pig thyroid hormone instead of the synthetic thyroid hormone can be better. I don't remember the name of the medication right off hand. 

Have you been checked for MS? And celiac? You remind me of what my sister in law has and is going through.

I was told women get MS and I am too old too. Right. This isn't done yet. I have more specialists than I almost can count. At one time, a good internist could figure most things out. I think the problem is how medicine is run now, which is an effort to see as many patients as possible in the day and use as few doctors as possible instead using PA's and NP's. It's the walmartizatin of medicine. We see it in pharmacies now. You might have one RPH in a pharmacy and the rest are pharmacy techs. It's happening in lots of things. As far as thyroid medicine, they say Armor Thyroid is the best. It's from an animal. Thing is, my thighs and forearms have been itchy and dry too. 

10 hours ago, StayAtHomeMom said:

I would ask the doctor is there is any imaging that can be done to be sure it is repaired. If you do a search for CSF leak and POTS it is a common occurrence and an easy fix. 

I have an appointment with him March 7. It's a follow up for the back surgery and also a consult on my neck. I've had C4-6 fused and C2-4 should be done according to my neck guy. The lower back guy does necks too. I like both of them, but I want to be sure. The neck guy said I have pressure on my spinal cord. When it rains it floods. 

9 hours ago, StayAtHomeMom said:

Are you noticing any specific foods that are messing with your stomach?

Lately, everything. I went to a vascular doc and a neuroophthamologist today. The latter said my double vision is caused by 4th cranial nerve palsy that I've had for awhile and for whatever reason, I've decompensated and it's a problem now. She also said I have evidence of thyroid disease in the eyes and thinning of the nerve due to pressure, although the pressure was fine when tested. I am on synthroid, 75mcg and I've been taking the same dosage for 3-4 year and I've lost weight. I wonder if that's been the problem? Last August my T4 was 1.8, which is slightly elevated. It was 1.3 a year before when a lot heavier. The vascular guy said I didn't have a strong bounding pulse in my feet. Now he has a lot of tests for me. This is getting to be a lot and also not feeling well all the time. 

22 minutes ago, StayAtHomeMom said:

Did they correct your CSF leak with surgery? If not and you still have one, that can cause POTS as well. 

They found it during surgery. The surgeon said it was from a bone spur. Could have been iatragenic. He said he stitched it and put fibrinogen or whatever they do. I still got the nasty headache the next day. It was the worst headache I've ever had. I would have done myself in if I had to live with that. 

20 minutes ago, StayAtHomeMom said:

Out of curiosity, why is keto hard for you now? I wonder, is it possible your stomach issues started after you came of keto?

I was on Keto 11 months+ when I started having stomach issues. The only things that are out of place about last May are that I went to Florida and did some hiking and beach walking there and I remember eating a piece of cod that needed more cooking. The latter seems more plausible as I started having problems less than a week after that meal. I can't prove it, but who knows. For some reason when I do keto now, I just feel like I can't stomach it and my discipline is gone. I did it for 16 months straight though, like a single minded nut. 30g net carbs a day max. 

5 hours ago, StayAtHomeMom said:

I want to start with congrats on your weight loss. I am currently doing keto to lose weight as well (recommended by my mother in law). I have noticed that keto has helped my GI symptoms unexpectedly. Not sure why but it has been a pleasant side effect. 

Second, it sounds like you have a lot going on and it may be hard for the doctors to pin point what is causing what. Surgery and bed rest can cause POTS or similar issues. It can be difficult to be patient while the doctors sort everything out. 

How long have you been on the metoprolol? How long before you get the results from your TTT?

Keto is hard for me now. I've gone back to a regular diet, just capping the calories at maintenance and I've been holding at 215. I am 6'5. I was 382 when I started in June of 2017. 

I've been on metoprolol for about 5-6 years, but I take less than I used to. I take 25mg now. I used to take 50mg. Lisinopril I am down to 10 from 40 originally. I probably could go off lisinopril . I have my appointment with the cardiologist next week, I think Tuesday. I went home today as I didn't feel well. I am pretty much out of paid time off and I work for the state too. Unfortunately we accrue sick at half the rate of vacation and it takes forever to accrue sick time.