altho i normally look anorexic (lyme weight loss), i am starting to feel like the PIllsbury Dough Boy.
My edema is pretty much full body...distended abdomen, swollen arms legs boobs..the works, no wrists, no ankles etc. the color of my hands and feet have darkened.
i drank about 4 litres of water on saturday (i think) and didnt feel like i had to pee until about 5am.
4 litres is pretty average for me. my pee looks fine and doesn't hurt when i pee. i do have pain under my right ribs and in my lower back. itchy skin (I guess from puffing up?).
my BP is usually 80-something/40-something. i'm deficient in sodium..so i dont think its hypertension.
im on plaq, zith and mino.
so if you've had this type of edema, what did your LLMD attribute it to? anyone get liver or kidney dysfunction as the cause? how was it remedied?
my LLMD's office called me in response to the voicemail i left describing this and said the LLMD wants to see me ASAP. i hate when doctors want to see me ASAP. :-(
so i'm freaking out. and puffed up and really not comfortable and cant sleep...so thought i'd check in on this.
so i may see him tmw and find out the problem and i'm not looking for a diagnosis form you all.
but i was wondering if others had similar experiences so i can sort of know what the list of causes may include. does that make sense? if not, maybe the edema has gotten to my swiss cheese brain. (is that possible even?)
thanks!
ps...i have looked at past threads about edema but i had a hard time figuring out if people had actual diagnoses for the cuase.
Posted by Tincup (Member # 5829) on :
Sorry about your puffy puff.
Hope you get answers dough boy.
Could be a number of reasons for the edema. Glad you are seeing the doc today.
Please let us know what they said... ok?
Posted by stjohn (Member # 15274) on :
thanks. its 2:30am and i can't sleep. i'm in alot of discomfort and i've developed a fever. well, for me its a significant fever. my temp is usually 97.4 or 97.5...and now its 100. uffda.
i will let folks know what its from...maybe it could havre been avoided soemhow.
or perhaps if i weren't such a lyme brain i would have realized that i was puffing up sooner...
there's a commercial on tv i think about hot dogs that plump as you cook them....yeah, i AM that hot dog right now. but not in an attractive way like the hot dogs plumpness. (ok i'm grossing myself out..i'm a vegetarian).
Posted by bettyg (Member # 6147) on :
st john, my late dad used to have edema galore; some of the things wrong with him were:
gout fluid around the lungs and heart
they'd put him on PREGNISONE or hospitalize him and drain the fluids off him by IV; once he put on 20 lbs. in 3 days.
so it's necessary to weigh yourself daily when you are putting weight on like that and get into the ER or your primary dr ASAP! *************************
he was in so much for that as well as having diabetes 2 and couldn't wear any shoes going barefoot to town and walking on GRAVEL ROCKS not feeling anything! uffda
best wishes...keep us informed ok! Posted by Marnie (Member # 773) on :
You can request to meet your doctor at the ER in the morning. You likely will be admitted to the hospital anyway for treatment and testing.
Possible causes:
Vasculitis
Cirrhosis - viral? or other causes of cirrhosis include drug reactions
obstruction of the hepatic vein
and many others. They will test the fluid and likely will drain it out to provide you with relief. You will feel a lot better.
They will usually give you albumin (protein) replacement IV.
Good luck. God Bless.
Posted by stjohn (Member # 15274) on :
thanks guys.
wow..bad about your dad...sorry. yes...i weighed 107 yesterday morning and 112.4 at the end of the day...and i hadn't even eaten anything! all i had was water all day (i was nauseated and didn't couldn't eat).
i am waiting for the LLMD's office to call..things don't usually get started until 9:30 or so...
oh gosh...admitted to hospital? i haven't stayed over night in a hospital before. gues i better give the heads up to my dog walker etc. Honestly, i never know what constitues and emergency as stupid as that sounds. if i were hit by a car, yes. but otherwise....
anyhoo...thanks guys...will report back...
Posted by hoot (Member # 19281) on :
I had a similar reaction to Motrin after my second son was born...put on 8 ibs of water in 1/2 a day. I stopped the Motrin and the edema went away.
hoot
Posted by Judy G. (Member # 18498) on :
I had major fluid retention all during the time I was being treated for Lyme and on antibiotics. WHen I went off about three weeks ago, all the excess fluid went away! SO great to be free from Lyme symptoms, antibiotics AND puffiness all over. Now just a little tweaking with the excess yeast and I think I am done! Posted by stjohn (Member # 15274) on :
wow...thats great news! congrats!
Posted by stjohn (Member # 15274) on :
ok....my "ASAP" appt is TOMORROW at 11am. but if i worse off than i was last night i MAY think aobut considering possibly going to the ER. :-)
Posted by bettyg (Member # 6147) on :
john, to me TOMORROW IS NOT SOON ENOUGH; go to ER now and get someone to treat you. how much do you weigh today?
sorry, but i've been there so much on this one driving up to the farm and bringing him down with me to ER to be admitted perhaps up to 1 dozen times or more.
just go by YOUR gut feelings; not mine ok; just sharing some personal experiences with you.
btw, dad was NEVER DIAGNOSED W/LYME, and had it at least 80 years !!! knowing all the symptoms i know now due to my having chronic lyme 39 years; he had the symptoms & other illnesses his entire life.
twice paralyzed from neck down; twice recoverign from these other illnesses...
good luck!
Posted by stjohn (Member # 15274) on :
i get so undecided abt what is an emergency...i dont want to make a big thing out of nothing...on the other hand, i dont know if this is a "big thing". i have the same problem with pain..."hm. i'm in pain but when is it bad enough to take something for it or consider it might be, say, appendicidis"
does that make any sense? i'm from the midwest, what can i say...trained in teh pull yourself by your own bootstraps and suffer in silence.
Posted by Tincup (Member # 5829) on :
Hey there...
Checking on you.
I understand it is hard to know when to say enough is enough.
When do we cry Uncle? I don't know.
Only you can make that determination.
The ER can be traumatic for patients with Lyme. Very few get treated politely to start off with. Many sit for hours with no help. Worse treatment if you are a woman.
You could be there all night only to learn there is nothing to do for you other than something simple.... like take an aspirin ... and then be told to go home and see your local doctor tomorrow... which you already plan to do anyway.
If the swelling has gone down... like last night... maybe wait? If not... maybe go?
Sorry I don't have that answer. Sure wish I did.
I am NOT a doctor and this is not medical advise.
Keep in touch and lettuce no how you are doing... ok?
Posted by Tincup (Member # 5829) on :
Hey...
How are you today?
Please advise.
Posted by Marnie (Member # 773) on :
We "detox" (toxins from pathogens and the drugs we take) via 1.our breath (when we exhale), 2.our skin, 3.our kidneys and 4.our liver.
When we take abx. and after they do their job, they have to be broken down and eliminated primarily by the liver/kidneys.
And these organs have to cope with all of the toxins released from the pathogens too.
Overwhelming the kidneys or liver can cause them to "leak" albumin into the tissues causing edema or ascitis.
Did your LLMD recommend a "medication vacation"?
Please note what Judy said re: when the edema subsided.
If the liver is involved, it can regenerate (heal) very fast in just a few days. On the other hand, damage to the kidneys is much much harder to reverse.
How are you today?
Posted by stjohn (Member # 15274) on :
hello all,
ok...by the time i went to my LLMD today, teh swelling had gone down (of course) but he said he believed me. ha! He said leg edema is different than full body edema.. and he said he realizes it could happen again...
He does want to follow up on liver/kidney stuff.
Because i've had edema, non-stop runs, fever, not peeing, pain...he is having me tested for c.difficile bacteria since that can show up from abx use. He said i have many of the symptoms.
also having albumin tested.
got rx for alinia (antiparasitic) for 3 days.
i have been taking 2 Plaq a day, zith every other day, mino every other day. now zith is out. only 1 plaq a day and 1 mino every other day.
obviously, the next steps depend on the results but i'm probably getting a Genova (formerly great smokies) NutraVal testing. I'm pretty nutritionally deficient. (I had some recent blood work) and a GI panel test. and also based on results, ultrasounds kidneys are possible etc.
i was taking Bouloke but ran out and re-ordered by its gotten lost somewhere in the mail. but i do need to start that again ASAP.
so i'm going to LabCorp tmw for all the blood testing (plus an iron panel), start the rx, and start the new abx regime...
crossed fingers!
so there seems to be a plan...but right now i am still have lower ab pain, anything that hits my stomach gives me the runs (water or food). so i feel pretty weak and tired (more than usual!). but thankfully i seem to be peeing again. (I'm sure you're all so appreciative of the details. ha!)
I got back from the appt and slept for 3 hours. and then just stayed in bed the rest of the day...lots of GI pain (deep in the intestines kind of pain)
I used to work with pre-kidney transplant patients so i know the effects of kidney damage! yikes!
thanks so much for all your responses!
now to deal with the property mgmt company about the black mold in my apt. pretty sure thats not so helpful to my recovery. ha!
thanks, StJohn
Posted by bettyg (Member # 6147) on :
john, thanks for update on yourself and what's happening. best wishes Posted by Melanie Reber (Member # 3707) on :
i'm not sure whats going on. My fever is getting worse. as i said my temp is consistently 97.4 or 97.5...its now 101.2 (i have three themometers so i can be sure one isn't just giving funky readings).
i don't ever have fevers. i may FEEL like i have fevers but when i check its below normal as usual. not this time...and my arthritis is absolutely raging...big and small joints.
my brain is hurting...not so much throbbing...more when i move my head. my neck hurts. adn my tinnitus is the worst its been.
so i was just out walking my pups and almost fainted i was so dizzy. there's still pain in my sides/ribs/gut. and i have a cough.
really....this is so pathetic. you know...just when you get used to all the other usual aches and pains...soemthing new happens.
I never know how sick i have to be to either 1. call my doctor (esp his emergency line on the weekend) or 2. just go to the hospital or 3. just ignore it all.
I'm pretty sure i don't have swine flu ;-)
...but maybe regular flu? its been years since i had a plain old case of flu. is having the flu when you have lyme more serious? or do i just have to wait thru it like regular people?
who has had the regular flu with lyme? did you do anything differently than if you didn't have lyme?
thanks.
Posted by stjohn (Member # 15274) on :
i went to the ER last night. i had abdominal pain on teh right side...and my LLMD recommended going and at least rule out more serious stuff. long story short...the ER doc said i'm fine. had an abdominal CT. blood/urine tests.
i still don't feel great.
I'm supposed to hear from my property mgmt company tomorrow about a plan of action for the mold problem i discovered in my apt about 2 mos ago. Out of curiosity, i looked up symptoms of mold exposure....pretty much all my "weird and atypical (for me)" symptoms that got me to the ER...were on this list! stuff i don't usually experience...the edema, flu-like feeling, fever, respiratory irritation, abdominal pain, on and on...how odd.
I"m not sure what to do...or if there is a way to have a diagnosis of health problems from mold exposure... in case i end up at odds with the property mgmt co. over the mold issue and if i have to move etc. like lyme, so many people seem to not think mold is really a health issue...
ayyy....i'm not so happy about having to add another health issue to my list...
suggestions?
Posted by bettyg (Member # 6147) on :
stjohn
so sorry you went to the duck hotel/er and were told you are normal!! so disgusting.
i'd make sure your apt. owners pay the bill for ER visit since it's mold related.
stjohn, click on directory at top go to 1st blank line and type in TROUTSCOUT click search; it will bring up his name, click on it, and send him a private mesage.
trout's been thru MAJOR MOLD PROBLEMS; i'm sure he can share some expertise with you ok!
others here as well, but edit your subject line and show MOLD in subject line by clicking on PENCIL, 3rd box to right of your 1st post you started here ok...
MOLD HELP NEEDED! having bad edema; went to ER; "normal"!
now you'll get the attention of those suffering from mold in their homes. best wishes!
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