Here's the scoop- a test through my rheumy doc showed high amount of protein in urine- a second test still high
so i went to nephrologist (in the mean time began drinking a lot more water b/c was told by cardio doc i wasn't getting enough water- close to dehydration kind of thing)
so the nephrologist blew off the protein in urine thing b/c my kidney blood test is normal- also b/c i'm very young and EVEN Though i told him i have lyme, cyto and EBV. He still shrugged it all off. is it a mistake to tell regular docs i have lyme??
Well he calls me himself two days later and says NO protein was found in my sample
A day later i do a sample through my llmd and there is a trace of protein
I know this fluctuates but...why do i feel the nephrologist just doesn't want me as a patient b/c of lyme? he didn't even offer to do the 24 hr test!
I think my lyme doc will do it- but if it's still an issue wont i need a nephrologist anyway??
has anyone else had protein in their urine??
I got a copy of the results from the neph doc and its all very iffy b/c there is no collection date- maybe i'm just reading into things too much
but why do i always feel like i'm "marked" and regular docs don't want to handle me?
so now i just get to sit around and hope my kidneys don't fail or that this is some sign of cancer?
Posted by learning721 (Member # 23798) on :
also my half moons-the white little moon on the finger nail- they are vanishing before my eyes and little white flecks are popping up everywhere.
if anyone knows what white flecks on the nails means- i'm all ears
so far for the half moons- i've heard b12 deficiency and yes...cancer
Posted by Keebler (Member # 12673) on :
- If you were not "getting enough water- close to dehydration kind of thing" as you state, your tests would be off the first time around.
Sounds like the test already improved with the kidney specialist.
The trace from the test with your LLMD can simply show some fluctuation. Maybe you need more water, etc. I'm sure he'll test again in a month or two again after you've been doing the water thing for a while.
As for mentioning to other doctors about lyme, most do recoil. However, I think kidney specialists have an advantage in the tests are pretty straightforward. I think this guy is being honest and sees no cause for alarm. That is a good thing.
Whether you choose the LLMD 4 hours away whom you first saw days ago, or will go with the local LLMD who you will first consult on Jan. 16, you should be in good hands. They will check periodically.
And, whichever LLMD you go with, all your symptoms will be assessed. It will all come together.
Still, be sure to go back over the links sent earlier on kidney health and self-care good for everyone to practice. Best to avoid ibuprofen as that can be hard on anyone's kidneys (as Tylenol is hard on the liver).
Water. Water. Water. Good food, Good rest, Gentle and enjoyable movement as best you can. All this is good for the kidneys.
Beyond that, the supplements suggested by your distant LLMD can also help nourish your cells.
Lyme has so many symptoms that you will get dizzy just trying to figure it all out. You will soon have tests to assess for other tick infections and body measures.
At this point, I can only advise you to relax and let the LLMD figure out how to attack the infection(s) and deficiencies and you can relax and focus on the very best self-care possible . . . and getting nutrition to your cells.
It will all work out over time. I hope you can enjoy some laughter and beauty this first weekend of the brand new year. Such work lies ahead - but so does hope. Be sure to have some laughs today. However you can, make sure you have some life in your life.
Take care. -
Posted by daisyrlb (Member # 15686) on :
Keebler good info you shared--ditto--especially the water.
Learning 721, I'm no doctor but here is my two cents worth. On the water, don't even trust your memory.
Have a system where you keep track of how much water you drink. It's that important--for the healing of the whole body.
Especially when you consider we are, what, 90% water.
May your mind be peace-filled and your body rested.
Posted by learning721 (Member # 23798) on :
keebler- you made me cry- well i was already going to cry but that just set it loose. You say things in such a good way
it has been so hard for me to be at peace with all this mess- and we havent even started care for my son
he keeps holding his little tummy and crying-lord knows what that might mean.
Sometimes i feel like i need a little "lyme literate" help here at home. I have 2 babies with this mess.
anyway, thank you so much for the advice- i will be drinking away! and daisyrib that is a good idea-
perhaps i will set aside the number of bottles i will drink each day and that way i will know i've had enough when they're all gone.
Well...i'm still thinking i should try a stess test or echo just so i can have the info i need about my heart- if i pass out i guess its a good thing i'll be in the office
i just feel like i need to know if there is any blockage or anything like that- keebler i know you mentioned passing out- but did they find that anything was actually wrong with your heart?
If i just can't take the test i suppose i will tell them so and have to stop but maybe it's a necessary evil at this point.
To me if i pass out it's either cause something is wrong with my heart or i do have NHM -in which case it won't be necessary to do a tilt table-
i'll just ask the doc if he think i should add a beta blocker...such decisions. such confusion.
I will try to find a reason to smile today- it gets harder but if i take a drug to make me smile who knows what else it might cause. such work!
Posted by learning721 (Member # 23798) on :
wow- you have been through the ringer!
thanks for the water tip- we have been drinking out of bottles for years- i guess i will pour the water in glasses- i don't trust a filter to purify our tap water-
it would have to be very top of the line and that would cost way too much for us.
as for the kiddos- the closest LLMD is not taking new patients- i got my son in right before she stopped and now she's not fond of me
b/c i called her after hour line for what she thought was a "non emergency". but she's all i've got and i guess if my younger daughter starts having real problems i will beg to get her in
but this doc's health is doing terribly-she's in treatment herself. it seems my son and i are doing worse- we ate some beef that was highly questionable.
who knows what that gave us. but how can we be the only ones on the planet to eat bad meat? surely other lyme folks who've had this for years have eaten bad meat at some point!
it was beef and it could have had anything- i even looked up mad cow disease- okay i'm stopping now- i know this is all overwhelming and hard to hear for anyone and it just makes me sound more crazy than i feel.
I kinda wish we had a doctor in the family so then all this mess may not have happened or would have been better addressed from the beginning.
Posted by Keebler (Member # 12673) on :
- Oh, man.
I see that a post I wrote, posted for all of a minute and then deleted was read. Sorry, learning.
I thought there had been nothing new that I wrote and it was just lecturing. I also really have a very hard time with word choice and can't be very concise. So as not to go on and on with hot air, I just deleted it.
So - for those reading - that is the jump in continuity.
---
You say you've been drinking out of bottles for years.
PLASTIC BOTTLES?
If so, it does not matter if you pour that into a glass then, you should never consume water (or any beverage or liquid food) that has been stored in plastic. Period. It really messes with your endocrine system.
Most water you buy from the store is not a good quality, anyway but the plastic bottles make it horrible, no matter how pure the source may be.
You can get a counter top purifier that is pretty good.
See the GAIAM web catoalog for some options: www.Gaiam.com
Mad cow also would not make you sick right away and, really, unless the cow consumed the brain of other sick cows, that is not of high concern but it's a good reason to know exactly where our food comes from and how animals are cared for all along the way.
The past few years, USDA standards forbid cattle brain to be in cattle feed. Rules also are supposed to forbid sick cows from the food chain.
While we all know the system is not perfect, again, with immediate illness after consumption, mad cow would not be likely.
But, if not properly cooked, and if ground meat, you would have to consider E. Coli. if becoming ill afterward. If the meat was too old or spoiled, other pathogens might be of concern.
For any questions of food poisoning, you should be able to approach any regular doctor about that, a specialist would not be needed at that time. You need not even mention lyme. Food poisoning affects lots of people all the time. If that was recent, you might still see a regular doctor.
If you ate a product you can go to the manufacturer's web site and see if there was a recall. But don't stop there. Call the store AND the manufacturer AND the distributor. If there is a problem, it needs to be addressed so others do not become ill.
If you got sick after eating at restaurant, it's so very important to call and talk to the manager as soon as possible.
Never be afraid to contact a regular doctor (or urgent care) if you suspect food poisoning. Any doctor should be able to help you out just fine with that - and they are normally happy to do so.
What to do if you think you or a loved one may have a foodborne illness.
-
Posted by karenl (Member # 17753) on :
The white flecks on the nails are a zinc deficiency. Either you don't get enough zinc or your body is not able to take it.
Only the 24 hour urine is a valid test. Protein varies. Write on a paper how much protein you eat, also it is more if you do sports.
Up to 450 protein they do not consider as a problem, above they want a biopsy which is useless and harmful. The nephrologist would not be so helpful, Homeopathy and herbs could be good for a stressed kidney.
Many people live with elevated protein, lyme and coinfections can cause it. Normally it has nothing to do with cancer, more with infections.
Corn silk is good for kidneys and cheap.
Posted by learning721 (Member # 23798) on :
Okay so i love the wellness water counter top purifier on gaiam website only problem is......
who's going to give me the 600 to pay for it? it's the best one b/c it adds minerals back and takes out all bacteria/parasites and viruses...
anyone got money to give away? well...if i settle for the 160-paragon filter i guess i'll have to hope my water doesn't have any viruses in it!
karen- i'm asking my llmd for the 24hr test- screw the nephrologist- pardon my french- i'm tired of being left out in the cold here- i hope you are right and this is all infection
but my lyme doc gave me NO explanation for my dissapearing half moons/lunula on finger nails and i'm wondering if its cause in his little book it said cancer risk.
more reason to take curcumin right?
wow where did you hear about the corn silk? i'm not even sure i know what that is- and i'm afraid of making a fool of myself by guessing.
Thanks for the help!
Posted by Pinelady (Member # 18524) on :
You might try doing more detox too. Get the poisons out of the system and prevent the protein.
Posted by Keebler (Member # 12673) on :
- I got a good countertop filter for about $80 on sale. This is a good time of the year for sales.
If you have a Whole Foods store near you, they may have some on sale. They carry the same kind I got. New Wave Enviro. It's been great for ten years, replacing cartridge each year.
Hey, call a store and offer them what you think you can fairly do and see if they can do that for you. Call and talk to the manager on the phone. Ask if they have any models that are discontinued but a model for which you can get replacement filters for a long time to come.
Or ask if they will have a sale soon. You can also find it at many sites on the web.
$88. + $8 to ship -
Posted by LymeLearned (Member # 20565) on :
Just to jump in, UTIs and kidney failure are my most frightening sx since being bitten last summer. I was in stage 3 renal failure (GFR 54) in July and my reg. doc would not give me abx. My LLMD stepped in just in time, but not before I was hospitalized.
I'm forever drinking water and fearful. Had another terrible kidney infection in November after a short break from abx. I can't afford to be off. In bed (I"m weak so much of the time, I drink from a sport bottle with a silicone spout so I don't even have to pick up my head when I can't.
I have a great nephrologist who understands Lyme, but not entirely. He WAS written up in the Chicago Tribune for treating an Oak Park woman who'd picked it up in her backyard garden. At least he recognized it.
Posted by Keebler (Member # 12673) on :
- learning,
You are lucky that your recent tests seem to indicate you are on the right path.
As for all the stuff tossed at you here, there is nothing like being able to sit down with a lyme patient who has some experience navigating the waters.
This coming Saturday, there is a support group meeting in your city. You may connect to someone who could become a bit of a tutor to you, if they have time and energy. At least, at the group you are sure to get some good information on positive approaches for all levels of healing.
It would be a good idea to get confirmation that this material on this page is still accurate.
The meetings will meet the second Sat of each month
There is an email contact (but no phone) - and details at the link above. -
Posted by laurajeanne (Member # 23825) on :
Oh wow - this is very interesting to read. DId you get any new tests?? I have had protein in my urine as well, flagged and doctors have ignored it as well.. they also ignored aenemia until I got a migraine so bad that I ended up in the hospital! Their response was "oh, ooops we didn't see that flagged - good thing your eye doctor caught that!" and gave me suppliments for iron. I am fine now with the iron - I was a vegetarian at the time... but I still have trace amounts of protein in my urine. In the actual follow up on the CCF mychart it says that if the same test is given in 6 months and there is antoher positive then it should be looked into - well another 6 months and there is another positive - too much protein - and they STILL AREN'T looking into it! I think this is when we need to switch providers... the problem here is I have no health insurance so I have to go where I am able to get aide.... I hope you have found some success or that this at least lets you know you are not alone in this frustration!
Posted by laurajeanne (Member # 23825) on :
sorry for the typos - I still am having some problems here.
Posted by karenl (Member # 17753) on :
I have half moons only on thumb and first finger. Can you post the title of this little booklet? My lab wrote white spots are zinc deficiency.
learning721, many people live with protein in urine and they get no treatment because actually they do not know how to treat. Before you ever consent for a biopsy pm me. They would give you steroids and then tell you that you attack yourself. With steroids your immune system stops working and your infection will take over. roadback.org The corn silk tablets provide the kidney with material to repair the globuli.
Posted by learning721 (Member # 23798) on :
laurajeanne, my gosh isn't it frustrating??? why are docs so careless about this stuff?! I mean i have to wonder if it's b/c they just don't want to deal with lyme patients.
im going to ask my LLMD if he knows a lyme literate nephrologist around- or just keep track of my protein through him...
so how is everyone detoxing these days? i am drinking more water and doing cholorella -i know garden of life also sells detox fiber to drink
we really cant afford one of those sauna things and the baths w/epsom salts may not be a good idea b/c of my kidneys- any other tips?
keebler- thanks for posting the name of your filter- i will definitely look into it.
oh and i have visited the support group- teresa is the leader and she has answered questions on occasion- but she is VERY ill herself- mitro valve prolapse
betty gave me the idea to pm her and ask for one of the other ladies numbers- i think i will, this other lady has been living with lyme forever
but it effects everyone SO differently- I got like 1 reply on my nerve/tendon twitching deal- and pretty much everywhere i post that nobody can fully relate- fordace was one of the few who could describe it similarly
i swear i feel like a zoo creature. everyone else does great on humaworm except me b/c i didn't drink enough water!! and now i may have permanent nervious system/tendon problems...grr
If they keep "spasming" the way they do whether it's the tendons or the nerves- i'm sure it can't lead to anything good- it happens so often these days
here i go going off on another topic! karen, glad to know i'm not the only one without half moons- anyway the booklet was my LLMD's so i don't know what the name of it was
but i think you're right about the zinc thing- dont worry i don't think i will do a biopsy- i'm already getting a "mini" dose of steriod from my floinef- i really hope i don't have to stay on it long term
i guess i will look for those corn silk tablets at the health store next time i go- that and alpha lipoic acid and all the other stuff on this LLMD's supplement list
Man- how are you supposed to take coQ10 with low blood pressure?? he wants me to take 200mg and just 60 is enough for me to feel a difference.
maybe the whole protein in urine thing is ignored b/c they know they can make more money off of us when our kidneys really ARE in bad shape?
Really ticks me off... but this lyme doc is an obgyn too so he can keep an eye on the urine for me i guess- that is if i don't wear him out with all my questions.
Posted by sixgoofykids (Member # 11141) on :
I used to not have half moons, but they are now coming back.
Posted by Keebler (Member # 12673) on :
- Learning,
You said: " . . . maybe the whole protein in urine thing is ignored b/c they know they can make more money off of us when our kidneys really ARE in bad shape? . . . Really ticks me off.. . ." end quote.
-----
Don't let others' experiences scare you. It's good to be mindful, however, in all due fairness to both your rheumatologist who sent you to the kidney specialist and to the specialist, they did the proper tests and acted appropriately, giving you good basic information.
Neither of them put you (or your kidney health) down for having lyme, nor did they ignore the basic kidney tests. You were lucky to be able to correct this early on and identify dehydration as the big key.
Since you started drinking more water, your levels improved. And, as instructed, when you drink adequate water over a period of time, these should normalize.
The kidney specialist is not holding back, keeping you in the dark or judging you. The tests showed improvement and he offered suggestions for proper care. Beyond that, whichever of the two LLMDs you select can check your kidney function now and then.
Links posted for you at other threads focused on things you can do to keep your kidneys healthy.
You LLMDs will check on the basics for test monitoring. They will offer you good guidance for self-care.
It's a lot to sort through and it takes time, so give yourself a break and just take each day as it comes for now, taking care of yourself.
It will all work out. Step by step. Looking forward, focusing on healing, positive "vibes" and the possibility of good health ahead, is the best thing you can do right now to put your body into a state where healing can happen.
You might want to explore joining a meditation group, RESTORATIVE yoga (not "power" yoga) . . . or Tai Chi. Most communities have all of these at various locations. It'd be good to be in with a group of people focusing on healing energy. It's amazing how much difference of these groups can make. I hope you can find what will fill your needs. -
Posted by thejoje (Member # 19976) on :
Have you read the article on Kryptopyyroluria? On p. 7 of the following article, note the picture of the white flecks on fingernails.
![[Frown]](frown.gif)
I hope you have found some success or that this at least lets you know you are not alone in this frustration!