Antibiotics Make Me Feel Better

[Birdlady]

I had been doing pretty awful lately. I went to Cleveland Clinic 2 weeks ago and miserably failed the tilt table test. My HR's on the tilt were nearly 150 for most of the test. Summer is usually when I just want to crawl in a ball...The heat makes all of my symptoms 1000X worse. I know a lot of you can identify with this.

Well a few days ago I noticed that I was feeling different. I thought to myself that I was actually feeling better, but I didn't want to say anything or jinx it... I thought to myself that it was a little odd as I've changed absolutely nothing...except 1 thing. I got a horrible bladder infection late Sunday night. I had some left over antibiotic and took it. Saw the doc the next day and got some more and have been on it now for nearly 6 days. For some unknown reason, the antibiotic is helping my POTS.

Can anyone explain this to me or has anyone else had this happen?

I am sort of excited about this because today I laid in the sun for about an hour, then I rode 1.5 miles on my recumbent bike and went for a nice walk at the park. This is absolutely insane for me! I am not the type of person to have placebo effects, so I know I'm not imaging this. My standing HR's are way down right now. From 160's to about 104!!

Does this point to some type of hidden infection or something? This is truly weird!!

[TXPOTS]

Did your physician run a urinalysis or culture to verify UTI? Are you still on Florinef and DDAVP? I just ask because I periodically feel as though I have a UTI, but my urine is clean. Oddly, when my bladder acts up, my POTS can be better. After multiple urologist and ob/gyn appointments, the bladder symptoms seem to be related to the meds.

Which antibiotic are you on? Glad you've had some better days.

[sue1234]

That is wonderful! ANYTHING that gives us a reprieve from this horrible POTS is great.

So, since it is an antibiotic and not any of the usual POTS-helping drugs(bb, etc.), then this will have to make us all think. My first reaction was wondering about Lyme, but not sure if the antibiotic you were taking would even be the right one normally used for Lyme. Do you have any history with a Lyme possibility?

And if not Lyme, so what else, in a bacterial way, could it be? I am not one that started POTS after an illness, but I've noticed many have. A lingering, chronic infection somewhere?

I am soooo glad this helped you feel better. Any helpful clues we get along the way are encouraging.

[Birdlady]

I have test strips in my house and there were extremely large amounts of blood, nitrites and wbc's. I was in serious pain the night before and couldn't sleep at all since I was up peeing every 5 minutes. They didn't culture because it was just so obvious from the dipstick. I was literally peeing red blood (Sorry TMI).

I am still on florinef, but I am not on DDAVP. I think that DDAVP is the med that does what you are talking about. Somedays if I took it and I didn't really need it, my bladder would feel odd like it wasn't getting enough liquids to flush through. I just think that with DDAVP, you go less so you are more likely to not flush out the bladder completely. That's just my unprofessional opinion though!

I got epstein barr virus just around the same time as my POTS started. That was 10 years ago, but I don't ever remember feeling this good on an antibiotic.

[TXPOTS]

That's a UTI alright! You poor thing. I'm just glad you are feeling better (from UTI and POTS).

I still have to take the DDAVP (was peeing 6 liters a day without it), but it does cause annoying bladder pressure. It may even be causing flares of interstitial cystitis (non-infectious bladder irritation) when the urine gets too concentrated.

You have me stumped on the antibiotic making POTS feel better. Hey, as long as you are feeling better!!!

[collies1974]

This is exactly what happens to me!! Ever since I got diagnosed with POTS I have had multiple bladder and kidney infections, and have been treated with multiple antibiotics. When I am on the antibiotics, my heart rates are so normal and at times, so low, that I cant take the beta blockers... I am an ICU nurse, and know that certain antibiotics, like Cipro prolong the QT of our QRS complex on the EKG. This combined with our beta blockers (which does the same thing), reduces our heart rates... The longer, or more prolonged the QT, the slower the heart rate. I have spoken to my POTS cardiologist and he thinks that is the explanation as well.

One antibiotic that really helps me is Cefdinir and another Macrobid. I then asked him if maybe these chronic, unexplained infections could be the cause of my POTS, and he said "Maybe, probably not." Beta blockers side effects also cause increased urinary frequency and sensation. To be sure I didn't have another underlying infection, other than the UTI's, he checked for Lyme's and Mono, both came back negative (I know it's crazy, but I wanted one, to be the cause of my POTS).

If you look up the side effects of Cipro, Levaquin, Macrobid, Ceftin they all "Prolong QT complex." In lay mans terms, it basically slows the heart rate, especially when combined with a cardiac med for heart rate and bp control.

Hope this helps, but if anyone else knows of another reason, please share.

Tracey

[Birdlady]

Wow thank you Tracey for the explanation on why this could be happening!! Yep I am on macrobid, but only have a few days left on it. I'm curious to see what happens to me after I run out.

I've never had any sort of infection markers run, so I really have NO idea if I have lyme or some other "hidden" virus/infection lurking in my body. I never ever get sick, so part of me thinks no? Do you have any suggestions on what I should have run? I really never went down that route before because I just don't get sick very often. Last time I was really ill with a flu was about 3 years ago...

I came off my beta blocker a little over 2 weeks ago so I could have the tests run at Cleveland clinic. I had been trying to stay off of them to see what my body would do and it wasn't very pleasant at all until I started the antibiotics and I felt like a new person.

[toddm1960]

As with all things dysautomic............antibiotics didn't change a thing for me. I've been on antibiotics the past 5 days and my ave supine HR was 75 and ave standing was 125 and my pulse pressure didn't change either supine 40, standing 20.

[collies1974]

Wow thank you Tracey for the explanation on why this could be happening!! Yep I am on macrobid, but only have a few days left on it. I'm curious to see what happens to me after I run out.

I've never had any sort of infection markers run, so I really have NO idea if I have lyme or some other "hidden" virus/infection lurking in my body. I never ever get sick, so part of me thinks no? Do you have any suggestions on what I should have run? I really never went down that route before because I just don't get sick very often. Last time I was really ill with a flu was about 3 years ago...

I came off my beta blocker a little over 2 weeks ago so I could have the tests run at Cleveland clinic. I had been trying to stay off of them to see what my body would do and it wasn't very pleasant at all until I started the antibiotics and I felt like a new person.

Hi Dana,

In our blood there are certain tests to run, like ESR and CRP to check our body's state of inflammation (they are basically inflammation markers). If these are elevated, it shows that there is something causing a state of inflammation, whether it be autoimmune or infectious. Have them draw a CBC with a differential (the differential will show which blood cells,are elevated or reduced, because they are specific to cerain reactions, to hone in on the infection. For example, if the Eos (eosinophils) are elevated, you are having an allergic reaction, or allergy season.). Have ESR, CRP and RPR drawn, to check for systemic inflammation. Generic lyme's titer testing is not accurate!! You need a Lyme's Western Blot, to really have accurate results. Mono testing, is just a "Mono Panel." Also get a 24 hour urine, to check Metanepherines, to see if you are adrenal insufficient (no relation to infections, but all POTS patients should know this).

A standard course of antibiotic therapy for a bladder infection is 14 days, not 7 days, especially in POTS patients, b/c we tend to be more susceptible to illnesses, b/c of our weakened states.

After you complete the antibiotics, you definitely need a repeat urine culture, sensitivity and analysis to make sure the infection is gone!!! A lot of times, it feels gone, but it is not, especially if 14 days for a bladder infection is not done. I know, b/c this happened to me and I got pyelonephritis, which landd me in the hospital... This then brings me to the next issue, if you have back/flank pain once you finish the antibiotics, most elikely the first antibiotic was not the correct one, and the infection is back and worse. Please make sure they do a sensivity test on the urine. This will test they bacteria in the urine to see which antibiotic will be effective in killing the bacteria, thus making your treatment successful.

As for me, I love antibiotics b/c I am normal without any POTS symptoms while I am on them, but about 2 days after I complete them, I get hit again with the BS of POTS!

I hope this helps!!

Feel better!

[Birdlady]

I've had a few kidney infections before (years ago now) so I know the warning signs. I actually had flank pain last night, but I have been doing so much more around the house and exercise that I think it really is just a muscle. And this might sound crazy but I sometimes my adrenals actually hurt too (I have adrenal insufficiency). I took more HC yesterday because I was soo active! I've retested my urine and it is completely clear now according to the test strips I have at my house. It is the exact same dipsticks they use at doctor's offices. I'm keeping a watchful eye on everything. I actually called the clinic yesterday to ask them if I should go on something stronger. She said I should see my PCP to get retested (just like you said), but since I have strips at my house I feel like it would be a waste I guess?

I will definitely see if my PCP would be willing to run some of these tests on me. Looking at my past labs she ran a CMV which was negative. I get copies of all labs run because I find docs miss things A LOT. Before I was treated my neutrophils were low, eosinophils and lymphs were always high, yet I was always told "your labs are normal". Eosinophils are within range now, but I also went on a restricted diet due to some food sensitivities.

My overall lymph %'s are always at the very top or above range. I guess that means something is going on and I should have things checked out.

One doctor told me that all of my problems were from the EBV, but her solution was to take like 15 different herbs and basically to "get rest". I am sorry but that's just a bunch of bologna! I am all for natural supplements, but I think she was trying to get $$ out of me. I'm not going to take $300 worth of supplements.

These were the latest EBV labs I had done last September.

EBV Antigen D AB IGG - <0.9 (negative)

EBV VCA IGM - <.90 (negative)

EBV VCA IGG - 4.53 (high)

EBV EBNA EGG- >5.00 (high)

On the report it says this suggests a past infection.

Thanks for the response. I guess even though I never get sick I should probably have all of this checked out just to make sure. Maybe I never get sick because my immune system is on overdrive.

[Janey]

This is really interesting... because when I was on cipro, I had no symptoms...

[Dizzysillyak]

I have test strips in my house and there were extremely large amounts of blood, nitrites and wbc's. I was in serious pain the night before and couldn't sleep at all since I was up peeing every 5 minutes. They didn't culture because it was just so obvious from the dipstick. I was literally peeing red blood (Sorry TMI).

I am still on florinef, but I am not on DDAVP. I think that DDAVP is the med that does what you are talking about. Somedays if I took it and I didn't really need it, my bladder would feel odd like it wasn't getting enough liquids to flush through. I just think that with DDAVP, you go less so you are more likely to not flush out the bladder completely. That's just my unprofessional opinion though!

I got epstein barr virus just around the same time as my POTS started. That was 10 years ago, but I don't ever remember feeling this good on an antibiotic.

This sounds like what I go through when I'm passing kidney stones. Did they do a KUB (xray of kidney, urinary tract, bladder) ? It would be good to know if you have a stone that way you can keep an eye on it and make sure it passes. One of mine got stuck and had to be lithotripsied (is that a word ?).

I'm one who's always one step away from getting a mild UTI (frequency and leaking). B complex vitamins bring these on within a few hours. I was told that this happens because B vitamins feed certain bacteria ... AZO always takes care of the symptoms. But as long as I stay away from B's, I don't get UTIs as often. I'm on the low oxalate diet too though.

I was wondering it there was an underlying infection causing my OI. I noticed a while back that I feel better if I use some antibacterial herbal teas regularly ... I started them again today after reading this to see if they'll help this time ... I'll let you know ...

I recently read that inflammation causes a mast cell activation ... and I have major allergies too. Link is below ...

Any ideas on where and why we'd have constant infections ? Oh, I just remembered this is a common problem for anyone with adrenal problems. oh joy ... link to info on adrenals ... http://dinet.ipbhost.com/index.php?showtopic=15350

thanks for posting this ... BTW. if eating raw garlic or taking massive doses of probiotics was going to fix this problem, it would've already ... lol ... Marcia

Info on inflammation causing mast cell activation ...

http://backandneck.about.com/od/p/g/prostaglandins.htm

Quote:

Prostaglandins are short-lived substances made from fatty acids that play a role in many body functions. Among other things, prostaglandins influence pain signals, regulation of inflammation, maintenance of tissues such as the lining of the stomach, blood clotting and stimulation of cells into action. There are a number of different prostaglandins, each with their own function.

Non-steroidal anti-inflammatory (NSAID) medication works by reducing the formation of prostaglandins. Because of this, these drugs often have unwanted side effects, such as GI tract bleeding, that result from the lack of prostaglandin activity.

Pronunciation: prah stuh gland in

Examples:

Prostaglandins stimulate target cells, such as mast cells into action.

[Guest humanb4monitor]

I think this is great!

The reality I think if OF COURSE...that when anything extra is broken with people with autoimmune, that is worse as well. Symptoms are fried.

So fixing the new stuff, relieves the exasterbated POTS ETC.

That is why I am NOW committed to OTHER changes to help myself and what life I have left.

That misfit stuff/thoughts that people diss. (even here) because we can't FIX heat or dialted pupils or feeling all weird when we forget to sit or other componets people suffer from.

BUT WE CAN MANAGE BETTER. I KNOW THAT.

We are all misfits, simply by these aweful imbalances. But I'll be $%#@%^ if I will feel it here. I will hug everyone cause it takes (((hug))) 3 seconds!

But won't let anyone use their illness to me mean or thoughtless.

Just cause we live in the U.S. and people believe we MUST follow cultural norms with medicine, does not mean there are not answers everywhere.

Ever notice that people who do not fill their bodies and hearts with junk are healthier??

They are.

Some believe that if we get imbalanced in the 1st 2 years of life (phys or emotionally) it leads to the long road. Especially if that baddness continues.

I repeat if often but just LOSING 15 years because ef others and illness has done me in. NO MORE. Iwant my "ME" back.

And if antibiotics give you relief to be you and feel better...give us some!

I just lost a day. I will try and get it back. It may wait till tomorrow.

[toddm1960]

That would be another great poll, what is your CRP level. I've had 3 now in the past 12 months looking for confirmation of AS and my reading was <.03......so undetecable. Could our endocrine system be repressing some of our inflamation markers?

[Nikki]

I honestly thought the same thing with myself lately. I'm going through a really rough time right now..and both times I've felt like this I went to the ER and it turns out it was just my normal POTS symptoms along with a UTI/bladder infection. I took the antibiotics and within the week I was feeling really good. I took one of those at home tests to check for a UTI and supposedly I don't have one now. I do think I have a head cold or something though that is making me worse. I don't know what it is but I think antibiotics help too!

[Birdlady]

I had no scans done on the kidneys/bladder. I had a kidney stone before many many years ago now and the pain was terrible like a 10 on that pain scale LOL. That was a completely different type of pain than what I was having a few days ago though. Typically your back aches soo terrible no matter what position you sit, stand or lay in. I just had terrible burning at the end of urination that literally brought tears to my eyes (sorry if TMI).

I found a CRP level from 2007 and it was non-detectable at <0.2. I also found a ESR from late 2008 which was 3 (0-20). None of those are really showing any type of inflammation in my body and that was before my adrenal insufficiency was being treated, so I was a total wreck! I know that sometimes when your body has been under attack for so long, that your immune markers actually stop showing up on lab results. You can also have a deficiency in the immunoglobins, which will cause all of your antibody results to come back low/negative. I've never had the serum quantitative immunoglobins (IgG, IgM, IgA) checked.

Again today, I felt really good. Went for another walk late in the evening as it was storming most of the day here. My heart is still a little elevated (I'm certainly not cured lol), but seriously I feel pretty normal! It's absolutely unbelievable and incredible at the same time. Nothing has changed (except antibiotics) and I'm not even on my beta blocker right now!

I guess I should mention this to my doctor and see if she has any ideas or suggestions. I'm still waiting on my report from Cleveland Clinic for the first round of tests I had done there. I'm getting impatient!

[bizbiz]

I had a UTI 7 months ago and had to go on antibiotics - I also felt really good while I was on them. Was even thinking about going in to see my doctor and begging him to give me a never ending script

[Dizzysillyak]

I had no scans done on the kidneys/bladder. I had a kidney stone before many many years ago now and the pain was terrible like a 10 on that pain scale LOL. That was a completely different type of pain than what I was having a few days ago though. Typically your back aches soo terrible no matter what position you sit, stand or lay in. I just had terrible burning at the end of urination that literally brought tears to my eyes (sorry if TMI).

I'm not so sure ...

Apparently kidney stones don't always present in the same way even in the same person. My first one that got stuck right below my kidney caused excessive bleeding, vomitting, diarhea and level 10 pain to the LEFT of my belly button. This lasted several hours and I thought I was dying ...

I had a CAT scan and a KUB at the ER that day and my KUB 3 weeks later showed that it was still there. The symptoms totally disappeared within a couple of weeks. The lingering nausea was the last to go. My Urologist lithotripsied it because it was too big to pass. Obviously, since it was stuck ...

My third one was almost exactly what you described except that I had a lot less blood with it. I believe that I didn't feel this one until I started to pass it out of my bladder / uretha area. I must've been in the process of passing it because by the time I saw my doc later that day, my symptoms were gone. I had no idea that passing kidney stones could differ ... My doc confirmed that I had a raging infection via urinalysis but since I was symptom free, I skipped the antibiotics ...

I just thought you might want to know this in case you get some of your symptoms back. Marcia

[juliegee]

I'm late to this thread, but just wanted to throw in a few comments. My son is being treated with antibiotics for his OI. His ped from Johns Hopkins has had great success with them. His theory is that some dysautonomia patients suffer from chronic Lyme (OR a similar infection that can't currently be tested for) and show marked improvement on antibiotics. He also surmises that many of us suffer from chronic inflammation (from unknown causes) and as the antibiotics address that, OI improves.

Regarding laboratory inflammation markers, many here have noted that despite the fact that they are obviously suffering from extreme inflammation, their CRP levels, sed rates are normal. These markers may not tell the whole story for those of us with autonomic issues.

I, too, show great improvement on anti-B's. I began taking them regularly for rosecea & have enjoyed a big improvement with my OI symptoms. Both my son and I take large doses of probiotics carefully timed between our antibiotic doses.

There seems to be something to this. ANS docs are now treating OI's with anti-B's, as long as patients use probiotics, and have blood work every 6 months to check for any negative impact. This is not without obvious controversy. However, my son & I are enjoying the benefits for now- fingers crossed it'll continue to help.

Julie

[Birdlady]

If it is an infection, then why not use one of those really powerful ones for a few weeks. I wonder if large doses of Vitamin C IV's would be of any benefit too.

[Dizzysillyak]

If it is an infection, then why not use one of those really powerful ones for a few weeks. I wonder if large doses of Vitamin C IV's would be of any benefit too.

Probably because our immune systems aren't working so we'll just catch something else after taking a high dose of anti B's. I was getting back to back URIs everytime I came off the Anti Bs when I first came down with CFS/FM/ME back in 1990. I was trying to work back then though and my body couldn't keep up. I'll still get sickly if I don't rest ... hmm, there's a clue.

Dana,

Are you on the low oxalate diet ? This has helped me with my kidney stones and my vulvodynia. I'm not sure if you're up on oxalates and so I wanted to mention too that C converts to oxalates in our bodies. I know this happens with C taken orally but I'm not sure if an IV could cause this. I'm not sure what the research says about this. It may not be a good idea for someone with an oxalate problem to try this.

[juliegee]

Good question. I asked Dr Peter Rowe (his doctor) about IV antibiotics, especially if this is a chronic Lyme thing. He said that Mack's symptoms weren't THAT severe, so IV antibiotics would be overkill. Mack's taking 50 mg of minocycline twice daily for 6 months.

I am getting OI (and other symptom) improvement from only 50 mg of doxycycline daily. It seems wise to use the lowest dosage that offers a benefit, especially if a patient was to continue on a long term basis.

Keep in mind that this treatment is highly experimental. Docs don't know why this helps or (in most cases) what infection they are fighting. Too many patients have shown incidental OI improvement after antibiotic therapy to ignore this development. I feel lucky that my son's doc is willing to think outside of the box and try anything that will help.

I don't feel the need to defend this and won't comment further, just sharing our story.

[Birdlady]

@Mack's Mom Thanks for sharing your story! I really do appreciate it and I hope I wasn't putting you on the defense. That was not my intent! I just really find this extremely interesting. My husband was sharing a story with me about some man that was improved after a very long course of antiB's too. I agree that we can't ignore this! I'm so glad that both you and your son are feeling improvement on the antiB's. Good luck to both of you!!

@Dizzy The thing is, I really don't get sick like ever. UTI's are really the only thing I get and I get maybe 1 or 2 a year at most. My husband is always amazed by this because I have so many things that are supposed to weaken my immune system (POTS, adrenal insufficiency, EBV). As a kid I got sick all the time with strep throat and then it was like a switch went off around age 10 or 11 and I rarely got sick after that. My doctor told me if I got strep throat 1 more time, that he'd take my tonsils out...I never got it again

I just looked at a list of high oxalate foods and the only thing I eat on there regularly are potatoes. The last time they think I had a stone (which they couldn't see on any scans) was back in 2003. I believe it had something to do with the fact that I got food poisoning like 2-3 days prior to that from a hamburger (all of my co-workers got sick too). It was a weird chain of events which is why I didn't get help sooner. It could have just been a really nasty kidney infection.

I think my immune system is working too well. I have had autoimmune problems in the past.

Well I have 2 more days of antibiotics and we'll see what happens after that.

[Birdlady]

Well the honeymoon is over as they say. Today was just awful as far as heart rates go.

Oh well at least I had a little break and felt normal for a few days!

[dianne.fraser]

Hi. Infection aggravates my dysautonomia, leaving me with much more severe symptoms. Around 18 months ago I had a succession of infections (chest infection, laryngitis, tooth abscess, sinusitis, conjunctivitis and tonsilitis) - I was extremely sick, but felt much better, and my dysautonomia symptoms eased, each time I took antibiotics. I figured that I felt better because I was addressing the cause of my aggravated symptoms (the infections).