Litmus Paper: I Spit On It,

[LindaJoy]

Hi, ya'll,

Just wondering. My system had been a little acidic there for awhile, so I got some litmus strips--the cheap kind that turn either red (acidic), blue (alkaline) or don't turn at all (neutral).

Mine were turning a bit blue, so I felt okay that I wasn't too acidic. Today, mine didn't turn at all. Neither did the urine on them. That means I'm "neutral," according to the little card the pharmacist included with my vile of strips. That's fine and dandy, but what does "neutral" mean with regard to my body's acid level?

Any clarification is appreciated. I've been all over the internet, and they mostly are concerned with too high of acid levels. What if I'm not showing acid? Or, is that what a reading of "neutral" means?

And, how accurate are these strips? I've never used them before.

Thanks.

Lindajoy

[MightyMouse]

Linda, normal ph of saliva is somewhat acidic to neutral (range 6 to 7 ph). There's nothing wrong with your saliva.

You seem to be worrying a lot about this kind of stuff--have you told your doctor of your worries/concerns?

[LindaJoy]

Thanks, Nina. Actually, I have no doctor right now. The one my husband and I are seeing, literally, knows absolutely nothing about anything! He had to get out a book the other day to find out how to order a blood test he wanted my husband and I to have. Any time I ask him any questions, he refers me to the ER. I have no one else to ask but you guys.

I got concerned because I've been putting out ketones lately. I went into starvation mode because I haven't been able to eat, as you all know, and I began to throw the ketones. This led to a bit of acidosis, so I got some litmus papers to try to keep track of my body's acidity.

I did see a new doctor yesterday. He's an allergist, but his card says "health investigator." He wants to find out why my IgE is so high, why my eosinophils go very high then normal, and why I have the digestive problems that I do, which make me unable to eat. Wow, that's what I've been wanting to know from all these hundreds of doctors for the past year!!!!

Right now, though, my diet is sooooo limited, that I know I'm hurting myself through lack of nutrition. Until I see my new internal med doctor next Thursday, I'm sorry, but all of you are my support. I hope that's okay.

Linda

[MightyMouse]

I don't know your doctor, certainly, but there's nothing wrong with a doc looking up a test or a medication. My docs look stuff up all the time in front of me, in books and on the internet, because there are way too many tests and medications to remember exact code numbers, or what color tubes they might need, or which lab does the test, whether you need to be fasting or not. Also, there are thousands of medications out there, and many docs like to double check dosing information, what other meds you can/cannot take with it, etc.

Unless your doctor has told you that you need to be tracking your urine ketone levels or saliva pH, I don't really see the point in trying to do it yourself.

Nina

[Catelynnw3]

Just my opinion, I think it is wise to look out for yourself. I relied solely on what my doctors said for 8+ years and suffered needlessly as a result. You are the most important factor in your own well-being, unless of course you are looking for things to be wrong. If you don't feel well and need answers, it is definitely up to you to keep searching for them.

"He wants to find out why my IgE is so high, why my eosinophils go very high then normal, and why I have the digestive problems that I do, which make me unable to eat." These things definitely need to be addressed. I pray you get to the bottom of whatever is causing your problems. Sorry I don't know anything about the litmus strips.

[flop]

Linda,

by any chance have you been reading about diabetic keto-acidosis on the internet??

The ketones in your urine just show that your body had been burning energy in a different way (probably because of the high protein content of your diet). This is similar to the starvation situation when your body actually metabolises its own muscle (protein) and releases ketones. Ketones are a waste product that the body will excrete into the urine - drinking plenty of water will help to flush them out.

The only people who usually need to worry about ketones are type 1 diabetics. Diabetics who are dependant on insulin. If that type of diabetic gets ill and doesn't have enough insulin their blood sugars can go very high and they can produce a lot of ketones. This process can cause diabetic ketoacidosis a very serious condition with severe dehydration, it will take only hours to days to develop - it doesn't come on slowly over weeks.

The acidosis mentioned is refering to the acidity of the blood - the saliva and urine don't reflect the blood acidity. This can only be measured by drawing blood from an artery to measure "arterial blood gasses".

Unless you are an insulin dependant diabetic you really don't need to be thinking about this stuff - you'll drive yourself crazy with worry.

As Nina said a lot of good doctors have to look things upin books or on the internet - they can't hold all of that information in their head at once, I'd much rather a doctor who looked something up and did the test right than one who thought they knew everything and did the test wrong so either the results were wrong or you had to have the blood drawn again.

I think the best bet is to work with the allergist to see if they can find a reason for your food problems and get that treated so you can get back to a more balanced diet.

Please don't worry, hopefully you will get some answers soon.

Flop

[MightyMouse]

Catelyn, i certainly wasn't saying that one shouldn't learn about one's condition and advocate on one's own behalf--in fact, anyone here who knows me knows that I've had to advocate very strongly for myself.

However, it's more important now for Lindajoy to find a decent doctor to help her through this process than to try to go it alone, perhaps going down dead ends or spending money on things she may not need. It sounds like her new allergist IS taking her concerns seriously and IS planning on working with her on finding answers.

Nina

[Sophia3]

When I had a checkup for my hysterectomy they checked my urine as my gyne office always does.

The nurse came in and told me to DRINK when I went home as my ketones were very high. It does NOT HAVE to mean "starvation" but can also mean dehydration which MOST OF us have issues with.

I hardly think Nina was telling Linda NOT to be her own advocate. But honestly, I have an ASTUTE endocrinologist and if he offers unusual tests or wants to check out an obscure med HE DOES SO.

But I must say the litmus test paper is something that could ONLY cause more anxiety.

After 17 years of a debilitating aspect of CFS later dx to be CAUSE BY POTS, we must LEARN to CHOOSE what to worry about. Some folks take their BP 40 times a day and it causes them GREAT stress and they LEARN NOTHING.

Unless you are hitting the floor with faints and no doc is LISTENING, stop being a fanatic about BP checks. I am USING that as an example by the way...not making fun of anybody who may be doing this.

I believe Nina was simply want the important things to be figured out. I think she and the rest of us know we have to be OUR OWN advocates. But come on, the ANS affects SO MANY THINGS including how much saliva we produce or do not produce and different foods or meds and throw the PH balance off.

Just my two cents and I wanted Nina to know I GOT HER POINT!

Peace out folks.

[LindaJoy]

I'm sorry, I didn't mean to cause problems here. I just thought that keeping my acid levels under control would help me to feel better. And, yes, I was worried about ketoacidosis, especially since I was putting out ketones and my acid levels were a bit high, according to my ER doctor, but my endo said I couldn't be going into that, yet he did say that the ketones could be from starvation. Of course, that concerns me. I don't understand this stuff. I'm just trying all I can to feel better, that's all. I'm sorry. I didn't mean for anyone to get upset about this.

Linda

[flop]

Hi Linda,

I don't think any of us are upset - just worried about you. We all know how important it is to have a doctor that you can trust, who will help you to understand things. Hopefully your new allergist or internal med doctor will be someone that you can work with to understand your symptoms.

As dysautonomia is such an unusual condition it is important that we as patients keep ourselves informed and know about our condition. However researching individual symptoms on the internet can be very misleading. For example if you search for POTS you'll find some helpful information (and probably some rubbish too - be aware that anyone can post stuff on the internet and it might not be correct at all). However if you search for "tachycardia" (one of the pots symptoms) you would get all sorts of stuff that could worry you silly - you might end up thinking that you are having life-threatening arrhythmias because the symptoms can seem the same. It is better to try to get a diagnosis from a doctor then do some reading rather than the other way arround.

For home testing I would ask your doctor first if the test will be helpful otherwise you could end up spending a fortune and not get any useful information. Diabetes is an obvious example where hom testing is needed but I can't think of any other conditions that need home testing.

Your endo is right saying that the ketones could be from starvation, the best way to sort that is to try to get your GI system settled so you can eat better. Like I said before ketones are a waste product and drinking lots of water will help your body flush them out into the urine.

It is not possible for you to go into diabetic ketoacidosis unless you are a type 1 diabetic so please don't worry about that (do you see what I mean about searching for symptoms or specific problems (ketones + acid) rather than a diagnosis?).

I hope you get some positive consultations and find some answers to your problems and questions. Don't worry about not understanding, that is why doctors spend so long at medical school and they still can't possibly know everything but they do understand how things work and where to look up the information that they need.

Take care,

Flop

[LindaJoy]

Thank you, Flop. I appreciate the compassion. You're right--I put two and two together and came up with five. That's dangerous and anxiety-causing.

I see a new internal med doctor this Thursday. Hopefully--------and that's a big hope--------he won't be intimidated by all of my unusual health problems and he'll want to help and STICK WITH ME!

Lindajoy

[flop]

Linda,

best wishes for your appointment on thursday, I'll keep my fingers crossed for you!

Flop

[LindaJoy]

Thank you, Flop, and thank you, everyone, for caring, posting, and trying to relieve my anxieties. I'll let you all know how my new doctor turns out.

Lindajoy

[morgan617]

I think we have all had moments of obssesive worrying about one thing or another.

I used to take my BP constantly, now my cuff sits in a corner collecting dust. I've had ketones in my urine, but typically you look for it with dehydration. (I live on Beechnut baby food) I've done urine ph's and they won't tell you anything, unless you have the blood work to correlate. So we really can drive ourselves nuts with stuff.

I wouldn't worry about a doctor that looked up a lab, as a rule, at least you know it's going to get done correctly, as many of mine haven't been.

We do have to be advocates for ourselves, and if a doctor just feels wrong, we have to go with that. There aren't a lot of them out there willing to put up with our weirdness, which doesn't help.

I have been ordering self labs from our local largest lab. They do certain labs without a doctor's order, you just have to pay for them. My BUN and creatinine have been elevated, which indicates a kidney problem. They are continuing to go up, so I have monitored them myself. I wrote the doctor a letter, sent him results, and have talked to the staff on the phone, all to no avail.

I see the MDA doctor in a week or so and then see my primary after that, and will hand carry the labs in. I am not obsessing, although I suppose it could be seen that way. But I do think a doctor should be interested and ordering routine labs if you are showing signs of renal failure. So, in this instance, I get them every couple of weeks and see they are continuing to rise and will have to advocate for myself.

It's all very relative and different for each of us. I think sometimes we just get so desperate for an answer, we just start looking at everything available out there and just make ourselves more nuts. And I think it can go in cycles. I can go forever and have absolutely no interest in what my body is doing, but then some new symptom comes along and it's whoa nelly, what's up here.

I was accepted and had an appointment made with one of the top Periodic Paralysis doctors in the world and he, without so much as a second thought, had his secretary call and say, oops, go away. I find this to be way too traumatic for me anymore, getting my hopes up for for a cretin like that. So I have become apathetic about my state of health. I will show these labs to my doctor and he will probably ask me what the hello I want him to do about it, and I will say, well some renal studies maybe, and he will say, to what end? And I will say okay, let's not.

This is how I deal at this point. Someone else may deal very differently. I don't think anyone is "right or wrong" in how they deal with their chronic illness, just different. Some of us are past thinking that diagnosis and cure is at the next appointment, and some of us still hold out hope at every appointment. Some of us are a bit obsessed and some not enough, perhaps. But I'd venture to say, we've all been in the same places at one time or another.

I don't think anyone got upset Lindajoy. We just all have varying opinions about stuff. What is written on a computer can be misinterpreted, because you don't hear how a question is asked, or see the body language that goes with it. We just need to keep that in mind when reading posts.....good luck with your new doctor sweetie, hope you get better vibes from him. morgan

[Catelynnw3]

I was just trying to encourage Lindajoy to keep searching for answers even though her doctor seemed to have none for her. I was concerned that she hasn't been able to eat. My post wasn't directed at yours Nina, and I do realize that everyone here already knows they have to be their own advocate. (I wasn't trying to be a know-it-all, just trying to encourage) I admit I felt kind of hurt when I came here today. Sorry if I offended anyone. I came here looking for support and trying to offer support. I'll keep my two cents to myself from now on.

[MightyMouse]

There's no need to keep your 2cents to yourself Catelyn-- a forum is all about everyone's collective 2 cents. I think the hardest thing can be that you can't speak face to face for a debate or discussion, so there is no way to see what the person's emotion is behind the statements made here.

My biggest concern here has been for Lindajoy--and that she's been worrying a great deal and expending great efforts to try and self diagnose down numerous different paths, without the assistance of doctor. In actuality, you and I had the same essential message-- get a good partner of a doctor, and look for answers together.

Nina

[LindaJoy]

I agree with Nina, Catelyn. Please don't keep your 2 cents to yourself. Your words of encouragement and support that day that you posted meant a lot to me.

Actually, everyone's support here has meant more to me than you all will ever know. This group is the only support, besides my husband, that I have. My family loves me, but they don't talk about my health. It's too hard on them. Ditto my neighbors and friends. Everyone would rather act as though I'm healthy, even though I'm left behind a lot as they all go off and live.

I want to continue hearing from everyone, good, bad, or indifferent, because everyone here means well, and I know it. That's our POTS family, and I couldn't do it without all of you!!!!

Morgan, I think you're right in that we all go through stages with chronic illness. I'm at an obsessive stage right now, and I know it, for several reasons: One, I am so thin it's scary and I still can't eat a whole lot, two, I just had a doctor two weeks ago tell me I had a disease that kills more than half of the people who have it (I saw another specialist who went by the test results that said I didn't have it, but it threw me just the same), three, I don't have a doctor and decided to fix myself on my own, and the BIG FOUR: BECAUSE I'M SO VERY TIRED OF FEELING THIS WAY: sick, scared, lonely, frustrated, lifeless.

Anyway, I appreciate all of you, every day. I do not take you for granted because you are that important to me. I respect your knowledge, sympathize with your pain, glory in your triumphs, and bask in your compassion.

Take care, everyone. Oh, I've quit the litmus spit tests. Hey, that's progress.

Lindajoy

[morgan617]

I told my GI doctor I was worried about all the weight I was dropping and he said I had a looong way to go before I needed to worry about that!!! (Men are so obtuse, I cried for 3 days because of course he said I was fat) Now everytime I see him, he asks if I've gained any weight yet, and I remind him, I have a looong way to got before I need to worry about it....haha

I'm glad your tests came back negative, and i certainly know the "have to figure it out for yourself" route, been there done that. It doesn't get us very far sometimes though. Just enough info to scare the bejeebers out of ourselves....and I can truly relate to tired of feeling crappy, we all can.

And we all need to get our 2 cents in, whatever it may be. It's perfectly okay to agree to disagree, as long as we are civil about it. If we all agreed on every single thing, it would be pretty dang boring here. And as it's been noted, it's often hard to read what's going on behind what's written. The sweetest thing can be misinterpreted, if you can't see the person to get body language and tone.....morgan