I have been searching all over the internet to find an answer to this, and cannot seem to come across a definite answer. At least it's somewhat comforting to know that other people are having the same problem. I've come here to hopefully get a little bit more help.
Back in the beginning of April '08 I started to feel like I had the flu which included achy joints, an odd sweet smell in my nose, which did not go away after 2 weeks. So, I decided to go to the doctor and they ran a couple of blood tests, and just to be safe he prescribed me Doxycycline in case it was Lyme. They did a CBC which came back normal (a little anemic), some Thyroid test which came back fine, a glucose test which was also normal, and a Lyme test which came back as 'no'. I continued to take the Doxy because it was making me feel a little better, but it gave me some severe gastritis so I went off it and he put me on Ammoxicilin which was probably a huge mistake. The Amox was not working at all and so I went back onto finish the Doxy. The feeling of having the flu lasted for 2 months, and somewhere in all of this the sweet smell also started to develop into a sweet taste. After that I still was not feeling that much better, so I switched doctors.
The new doctor I went to ran a couple more tests which included the same ones as before, taking a urine sample, and the Lyme titer. The Lyme titer came back as equivocal. So, he diagnosed me officially with Lyme and gave me Ceftin. I finished that and I felt better, besides some lingering joint pain, but the sweet taste remained. He said it was probably ketones because my body was recovering or something like that, but I feel fully recovered now and I still get it off and on.
Since then I’ve been on a Z pack for a sinus infection and Cipro for a UTI. Also, he heard a murmur, so I’ve had an ultrasound for that which came back saying I had regurgitation among other things. None of these prescriptions have taken away the sweet taste or smell. Some days it’s there and some days it’s not. It’s driving me crazy! Lyme disease is terrible, but I’m sure I don’t have to tell that to anybody who’s had it! Thanks in advance for any help I may receive!
Hmmm, I've never had a sweet smell stuck in my nose, so I can't comment directly on that.
I have had sensory issues and feelings of burning and tingling and such, and in a way that doesn't seem so far removed from phantom sweet smell. In both cases, your senses are picking up on something that isn't really there.
And at least it is a sweet smell!
I'm still new to Lyme after having been sick since summer '07. I'm still waiting on my W. blot results, but I started minocylcine about a week ago.
Last Jan was when I first went to my doctor about "this." She noticed then I had a murmur and I had an echo which like you showed regurgitation. She totally dismissed it though, and I never thought it had anything to do with my "WTF disease" until I came back to considering Lyme!
Anyway, sorry this is not directed advice. Take care and good luck!
Before treatment, I had many smell and odour hallucinations. I had a sweet taste in my mouth which would turn into a licorice taste (I hate that stuff!). Sometimes it was so strong it made me queasy.
Other times, I would taste metal or dish soap (the lemon kind like Sunlight...weird).
As for my nose, I would often smell mothballs--we don't have a single one of those in the house.
It was all pretty scary, I thought I had a brain tumour. Fortunately, these hallucinations disappeared when I started treatment. When I took a 2-week break from antibiotics, the sweet taste came back right away.
I know my post is not helping you much, but it feels good to know we are not alone experiencing crazy symptoms...
You can feel, smell, hear and taste just about anything with Lyme disease. I used to feel like I was lying in a puddle of cold water when I went to bed. Or sometimes I felt like a hand was on my back and no one was there! My hands and feet had a burning sensation that I can only equate to the feeling I had as a child when I fell down on the black top at school. I heard a woman crying and there was no one in the house. I couldn't locate where simple sounds were coming from. Even the sound of my own footsteps seemed like they were coming from far away! When I was treated with antibiotics the weird sensations stopped. When your brain is being infected by spirochetes it's a real waking nightmare. I'm so glad I got treatment from a doctor that knew he couldn't rely on test results!
I am on the typical high protein, low carb diet that helps with the treatment, and sometimes I can't eat the chickens and steaks because it just has an awful taste.
I mean the chicken tastes very birdy to me at times and I always feel bad because sometimes going out to eat can be a hassle. Steak also at times to me tastes like old dirty gym shoe...not that I have chewed one....but if I had I think thats what it would taste like.
I also noticed weird taste/smell sporadically ~ 10 months ago. I had more rotten-egg taste when it occurred. Also, food tended to taste more bland. This symptom occurs in other illnesses, including Lyme.
I think it's all part of the neurological problems you get with lyme. I've had everything from weird smells to sensitivity to smells. At my worst my husband's cologne almost took me out every morning. I almost vomited. It made me so sick every day. I've also had burning, tingling, numbness, hot and cold sensations, feelings of water dripping or splashing on my skin and more. It's all sensory issues.
" typical high protein/low carb diet" -- interesting! I haven't heard this before. How is it supposed to help?
I cleaned up my diet as best I could when I started on all these antiobiotics, to avoid feeding the Yeast Beast -- little sugar, no-yeast bread -- and it helps, but not entirely. I just took a Diflucan yesterday because I realized the Beast was back...and I was Herxing, so it's been fun.
I eat a lot of vanilla low fat yogurt with cinnamon and unsweetened powdered chocolate and molasses [lots of potassium] which yes, I know is sugar, but my blood sugar was so low I was practically asleep all day.
I eat an egg everyday scrambled in olive oil (sometimes with chopped garlic) to take my meds with, which seems to settle my stomach for the meds, and so does cream cheese with the no-yeast bread ... so high fat seems to help me. Also sauteed veggies. And I've been bad lately, with ice cream.
I gave up red meat long ago, so I hear you about meat not tasting good. Salmon is usually tasty to me, and I feel better after I eat it (I'm sure for all kinds of reasons). Sometimes roasted chicken tastes good too, but I agree about somethings being too awful to contemplate, much less EAT.
I have no idea what my cholesterol is right now, and just don't care! I'll worry about that later when Mr Lyme and I part company at last.
Any other diet ideas out there? I'm getting in a real rut.
I basically eat chicken and beef, and cheeses (at the alotted times) green veggies (brocolli, zuchinni, peas, uncooked spinach), quiches. Anything that is cheese and meat. I also have added some carbs though. Malt O Meal. The one that doesnt have any sugar, cashews, pistachios, avacado, the small rice cakes( you get 9 for 70 cals.)
I am mostly suffering from the symtom of annorexia. Lyme can cause these issues....I am by no means annorexic, but the Dr. wants me to eat 2000 cals a day and because I am so nervous about weight gain I only eat maybe 4-600. I weigh 3-5 times a day. Its become a scary obsession.
I found the lo/no-yeast bread at the local grocery (northern California). It has soy as well as wheat in it, and I'm not crazy about the soy part but it's okay. It's called:
"Alfaro's MicroBakery -- Santa Cruz Sourdough -- 100% natural and Baker's yeast-free bread" but in tiny print it says "Sara Lee Bakery Group, Inc., St Louis MO". Ha. Maybe there is some OTHER kind of yeast in it, and they are specifying just no 'Baker's yeast', but I don't know enough to say one way or the other.
Ingredients are: "Enriched flour (bleached wheat flour, malted barley flour, ascorbic acid, niacin, iron, thiamin mononitrate (vitamin B1), riboflavin (vitamin B2), folic acid) water. Contains 2% or less of each of the following: salt, soy flour."
So even tho it masquerades as a tiny brand, you might be able to find it wherever you are, right next to the Sara Lee coffee cake.
I agree with JackieCalifornia! Our bodies need EVERYTHING we can give them to help fight this. If you aren't eating enough, your body can't fight.
If your LLMD is very restrictive about what you should eat, communicate to him how this is affecting your attitude about eating and how little you are eating, and how often you feel you need to weigh yourself.
I agree that the Lyme could be affecting you and driving you to this extreme behavior. But no matter where it is coming from, you need to address it. You deserve to take good care of yourself. Try to stay off the scale and eat well!
One more thought ... it's my understanding from what I read that Lyme and antibiotics deplete various body nutrients.
My doctor (an LLMD) rolls his eyes slightly when I say that I was weak and failing during antiobiotic treatment until I began to supplement with vitamins and minerals (esp. magnesium and potassium).
Everyone is different in this way (I know someone under similar longterm treatment who takes no supplements and is fine) -- but I was profoundly ill for quite a while before diagnosis of Lyme and Babesiosis, and I am crawling out of a very deep hole as a result.
I have read that Lyme uses magnesium in its reproductive cycle, and that when magnesium levels fall, the bug goes into hiding in its cystic form until there's more magnesium to be had, when the bugs come out for the picnic. I don't know if that's true, but I also know that when I was very ill before diagnosis and landed in the emergency room twice in a week due to heart palpitations, I felt fine after a couple of liters of electrolytes by IV -- until the bugs apparently used up all the available magnesium again (magnesium levels affect heart rate).
I have found one study done on poor South American people on long term antibiotics for tuberculosis, and that study also noted electrolyte depletion apparently due to the antiobiotic treatment. The patients tended to malnourishment due to poverty, it was implied, but the treatment made it worse.
So, food is important; good food is especially important; and nutritional supplements can't hurt and may be quite important -- but Modern Medicine being focused on drugs, nutrition gets short shrift.
Sorry for the long post, because if you're feeling as lousy as I was, you don't have the energy to read this far. Talk to your doctor, eat well, consider supplements, and hang in there. You aren't in this mess alone.
Thanks Jackie about the bread, I'll look for it, however, you didnt have to remind me about the SaraLee coffeecake ahhh!!!!!
On the comment of EricaO about magnesium. I understand that you have to take extra magnesium to keep your heart in check. What I'm confused about is the comment about the bug using it as an aid in reproduction. I don't believe I've read this, however, it makes sense, and I have trouble with my memory. It's like a catch 22. However if you are treating with antibiotics and taking magnesium then it brings the bug out into the bloodstream so it can be killed off by the antibiotic. Right? In any case, I've read from Dr. Burrascano's guidelines, suggests the doses of magnesium. I would like to read about that if you have it available. Thanks
I am taking magnesium daily...twice a day actually its magtab-SR It is a 12 hour sustained release tab. 84mg twice a day.
I also take acidolphilus (probiotic), SamE, coq10, juice plus, vitamin c, multi vitamin, B12...attempted to take omega 3...but I am allergic to it. I also take Acetyl-L Carnatine.
The Acetyl-L Carnatine and SamE work together for help with the neuro symptoms.
Juice Plus is $64 a month but it is like eating 12 servings of fruits and veggies a day.
So, I am taking a TON of supplements!!! Thanks for all of the advice. I did a pinup shoot today for my hubby for Valentines day...so I know that was contributing to part of my weight issues and small amounts of food.
But I have to be honest I am FEELING amazing! I don't know if the treatment is actually progressing as planned or what but I have been on this aggressive treatment for 60+ days now and the brain fog is finally starting to cease and the correct word usuage is coming right away without a second thought.
Still quite a bit of joint pain especially in the elbows and such. But, I am so thankful for you guys. My dad warned me about joining something like this because unfortunately there is a lot of negativity with a lot of illnesses and he didn't want me to be discouraged but I think we all make an effort to stay positive and support each other and for that I am so grateful.
Okay enough of my banter. I am exhausted and need to get some shut eye.
I agree that almost everyone is positive here. I think it's important to have people to talk to who know what we are going through. I have a great husband and family but I don't really think they understand what I feel physically.
About your elbows -- I got little creaking pains in mine early in treatment, but they have now stopped. I also sometimes get them in my knees, so that when I flex them gently, I can hear 'rice krispie' popping sounds [or bubble wrap popping] faintly in the joints, and get puffiness below my knees. I am guessing that this is result of the meds killing the Lyme hiding in the synovial fluid in the joints, a place that Lyme bugs can hide to evade antibiotics, since antibiotics are carried in the blood stream, and joint fluid has little blood flow, so the meds can't reach the bugs as easily.
Eat well, sleep well, hang in there!
(For those who can't sleep, talk to your doc ... I am very sensitive to meds generally, and a tsp of Benedryl would knock me out ... but then I realized after a while that I was having very strange dreams from it ... or maybe I was also catching up on lost dreamtime. I'm on different meds now and sleeping VERY well without Benedryl.)
Hey just wanted you all to know. I am slowly weaning myself from the scales. I am no longer weighing myself multiple times a day and I am actually attempting to weigh every other day now, and hope to eventually get it to once a week or maybe once every two weeks. I avoid looking at the number on the scale at the Drs. office, because if its higher...which 9 out of 10 it will be because its a Drs. scale I panic.
My husband thinks my obsession to be perfect is due to the fact that I was in pageants and modeling as a child and teen. I think that it is due to all of the women out there that are painfully thin and are seen as beautiful.
I believe it's the ozone they put in bottled water that causes the sweet taste. Ozone also smells very sweet but beware, it's also poisonous, like carbon monoxide. Ozone is also generated by air purifiers, destroying anything made of rubber.
I'm allergic to eucalyptus so that is not for me. Let me know how it goes though. Curious.
Neurological issues can cause any sort of hallucinations as basically everyone is saying. Ozone, could be, I haven't ever read about that.
But when we're speaking of people with neurological goings-on, that is where "all signs point to".
I had have sensory hallucinations lying flat on my bed, felt like I was falling off the bed or through the bed when I was safely in the middle.
While pouring a glass of water, it felt like it ran down my bare leg, but the water had neither fallen nor was my leg bare.
Sitting in the car at a stop light and feeling like the car was moving. Seeing it move forward toward the crosswalk line. When it wasn't.
Smells that aren't really there: I've had One to do with an odor, but can't recall what it was.
A former friend who suffers from cluster headaches (hence: neurological) had olfactory hallucinations of a Sunday roast dinner in the oven (yum) but also cow dung. 2 smells nowhere in the vicinity of his house.
My most common odor-that-isn't-there is what I call delicately the 'dead rat smell'. Truly revolting. It varies a bit from time to time, but the name pretty much sums it up. No running water or moving objects for me, tho. Very slight balance issues sometimes, if I walk around a corner too fast. Sounds like I'm fortunate.
I knew someone who probably had undiagnosed Lyme, who got rotten smell sensations too. If only it could be something nice, like rose petals. :)
Hi,I am a 19 year old girl.Iam not able to feel the taste of sweet through my toungue.Speciallly when i eat jalebee,its feel like sour taste.
Its being only 3-4 months,I am facing this problem.
Plz suggest solution and medicine for this.
I have had the same symtoms for about 4 years but only for up to 12 days in the spring. Once in late March and twice in late May. I have it now! It smells like Juicy Fruit gum...but it sometimes gets stronger and smells like mothballs. Today it was really strong and is sickening...it's not fruity today...it's chemical (like mothballs). This is the fourth year I have experienced it. Last year I E-mailed a lot of scientists who did research into smells and sensory stuff. they all thought it was very interesting but the most they could come up with was a brain tumor! If it's like most years it should be gone by next Thursday as it last about 12 days. Every year I'm starting to expect it. I wonder if it has anything to do with seasonal plants or flowers?
I get lots of taste and smell hallucinations.
My husband calls them smellucinations.
The worst one is when everything tastes like mould - I have sometimes spat out food in public because the mould taste was so unbearable. But i get all sorts of other fantasy pongs too, the rotten fish is another of my least favourites.
Wlell, something that definitely helps is zinc supplements. Zinc deficiency can alter anyone's sense of taste, that is apparently one of the classic signs, and I have read that in lyme disease zinc deficiency is very common.
The zinc hasnìt totally resolved the problem, there is still a neurological issue, but for me it has reduced it by, I would say, about 80 percent, so it is certainly worth trying.
Another thing, some antibiotics give you a nasty taste in the mouth. When I was on Azithromycin I had a bitter taste all the time, which was completely unbearable. If that is the cause then i don't think there is anything you can do about it, other than change antibiotic.
And finally, to Erica, I do the high protein low carb diet too. It works really well for me, i have far fewer gut problems and much more energy too.
You have to eat lots of oil to fill you up, and your body gets very geared up to burn fat for energy instead of carbs.
I keep trying to dredge up the self control to go back onto the full Atkins type diet I used to follow, but my husband keeps baking delicious loaves of fresh gluten free bread and it is too temptimg!
I had them bad when I got the massive fungal infection from Florastor probiotics ... it has gradually faded in the past 1-2 years, and now happens only occasionally and only in my left sinus area. I have wondered if that is the last hold out of the fungus. I feel kind dull witted when that smell happens, my eyes get a little dry and irritated, and the next day I have somewhat dark circles under my eyes.
Over time, it's less and less of an event, so I take that as progress.
I didn't really notice the bad smell as a major thing, since there was so much other misery going on, so can't say when it really started, but it was around the time I was on yeast-based probiotics (Florastor is the brand name of S. boulardii) (at LLMD's insistence) to theoretically re-seed my digestive tract with good yeast to avoid getting a bad yeast infection as can easily happen when the antibiotics wipe all the good bacteria too.
As treatment for Lyme and babesia progressed and the Lyme symptoms receded, however, a systemic fungal infection took hold (as a result of the Florastor, it seems, and my Lyme doc didn't dispute that, tho he said he'd never seen it before -- or perhaps more accurately he had never *identified* it before). I would get a wave of the bad smell through my head and feel ... not tingly, but like something was passing or sweeping through my body. I would feel a tad warm and disoriented, and the final step would be a few involuntary gulps, as tho my esophagus was having slight spasms. Then the wave of feeling strange would pass down and out of my body.
I know, it sounds psycho. This fungal thing started toward the end of my Lyme antibiotic treatment, and I was put on massive doses of Diflucan to kill the systemic fungal infection. Way too many docs think a fungal infection means some pesky itchy v*ginal infection, and don't take into account that it can overwhelm a variant immune system or a sensitivity to mold (which is fungus, after all). [[Looking back, I think this tendency runs in my family. My father had chronic 'sinus trouble' and lived on Coricidin etc. but never found a cause for it, not that anyone was looking very hard.]]
I stopped seeing the LLMD around this time and made a few stabs at seeing more 'regular' docs to get me out of the fungal problem, but they were all idiots and didn't want anything to do with someone who had been seeing an LLMD. I kept taking the big doses of Diflucan, and as my own contribution to the situation, I stripped my diet down to proteins and greens: no carbs whatsoever, in order to starve the yeast.
It was miserable, living through the fungal die-off, but it had to be done. I was massively bloated, my teeth were loose, my eyes bloodshot, my brain fried. I couldn't even walk down the bread aisle in the grocery store without getting a flare of symptoms just from the yeast in the air!
I found a doc who understands the body as more than a collection of symptoms and looks beyond narrow, one-size-fits-all diagnoses, and she helped me with diet and supplements. It took time, but gradually it all got better ...
.... except for that pesky left sinus still, even now. I seldom now have the 'dead rat smell' as I dubbed it, and now it happens mainly in the wee hours of the morning for reasons I do not know. It doesn't smell bad like it did before, now it's just a tingling and a warm wave that passes from my head down through the body, ending with a few gulps. And it's done in maybe a minute, sometimes one or two waves in succession. It happened a week or two ago, when I had pulled an all nighter to finish a project for work, and that fatigue may have allowed the ailment to rise up briefly, but it seldom happens now, maybe once a month, and mildly.
Often the aftermath includes a faint, irregular reddish/pinkish splotch on my lower forehead, an inch or two wide -- like a really sloppy and pale bindi. And my eyes are slightly irritated, like after too much swimming pool water. And I feel slightly cranky and stupid for a day.
Somewhere back there when I first suspected the fungal aspect, I saw an ENT, who used numbing spray up my nose and used a flexible nose-o-scope (I don't know the real name of it, but it didn't hurt) to peek up into my sinus, but he didn't see anything, tho I'm not sure he was thorough.
The wise doc I found to help me rebuild my body recommended saline nasal irrigation, using a product called 'NeilMed sinus rinse' (non-prescription, I got it at the local drugstore), which is a squeezable container and little packets of powder to mix into water that has been boiled and cooled, to avoid introducing other infections like can happen with insufficiently sterile neti pot usage. I did the rinses for a brief while, but didn't like the drowning feeling, so I quit. I'm thinking about trying it again, to wipe out the remainder of whatever may be hanging out in there.
Oh, and one other odd thing, on the left side, where whatever it is seems to lurk, there is often a feeling of mild pressure, tho not stuffy exactly, and sometimes if I turn my head while lying down, I can feel something go softly 'plop' in that sinus. Eeeewwwww!!!!!!!!!
I did a little reading on fungal sinus infections, and it's yucky, so I try not to obsess over it. :)
So there's my data dump. Let me know if you have any ideas!
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