seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I was sitting in a room tonight and all of a sudden I had a really strange episode where the room smelled incredibly strong of oranges/citrus. I was getting extremely nauseated.
Immediately, my BP rose to 160/98. Terrible anxiety. It came literally out of nowhere. No incident sparked the issue. I looked everywhere for a source of the smell and found none. I checked the room I'm in and the others surrounding it.
Scary feeling. I still feel 3x weaker than I did before the incident, but the anxiety level decreased substantially as well as the smell. I emptied out all garbage cans. No smells there I could find. I was sitting down on a carpet.
I swear things are crazy. I'm getting tired of all these freakish events. ;(
I read adrenal fatigue can cause extremely heightened sense of smell, anxiety, sensitivity to light, horrid fatigue, allergies, etc. ALL I have. Who knows though. There's always some condition you can find which matches symptoms if you look a bit.
Anyone else experience this odd stuff? I never had MCS. I always am very aware of smells, but nothing like that.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Abxnomore
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posted
Sorry to hear this. Scary, indeed.
Inflammation of the cranial nerves, a sign of neuro lyme, is often the culprit for MCS and inflammation of the cranial nerves can alter your sense of taste and smell. Usually, IV ABX is what is needed to get a handle on that.
I hope it was a one time thing and that you don't experience it again.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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seekhelp
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Member # 15067
posted
Now you have my scared Abxnomore. I'm starting to wonder if I'm worse off than I thought. Maybe all my swallowing issues, balance problems, etc. are cranial-nerve related. I'll never get iV Abx so I'm screwed.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Before dx I often smelled cigarette smoke, even though no one in our housen smokes.
I looked everywhere for a source, especially after bringing stuff down from my parents' house--they smoked like chimneys--but nothing.
My husband, who is SUPER sensitive to smoke, never smelled it at all.
I got to the point I believed peopkle who told me I was being hauntd by my parents, lol.
Hey, phantom smells caused by phantoms sounded better than thinking I was crazy.
Hope you don't have a repeat performance.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Olfactory hallucinations are not uncommon with Lyme.
A quick google pulled up too many to list here - try searching "olfactory hallucinations Lyme" and you will find multiple articles.
Amy Tan experienced these, and wrote about them in her essay about having Lyme.
Editing to add that you're not screwed despite not getting IV abx. It just takes longer.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Abxnomore
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posted
Seek all the symptoms you have point to neuro Lyme. They are classic neuro lyme symptoms, but that doesn't mean co-infections are not responsible for the symptoms, as well. IV ABX is the surest and fastest way to get a handle on that.
I am of the school that you need to treat this aggressively unless you want the illness to aggressively get you. You need a Dr.B protocol and approach.
If there is a fire you put it out as fast as you can, not slowly. I know there are different thoughts on this but I'm convinced that aggressive high doses of ABX both IV and Orals is the way to go.
Why would any one want to treat a brain infection slowly? I know some have bad herxes, etc., but a good LLMD will know how to walk you thru this stuff and the herxes and feeling like hell is what it takes to get over the hump.
Don't be scared, reaccess your treatment protocol and determine if it is right for you and if you need to make a change. Most of us go thru several LLMD's before we find the right fit and before we find what work for us.
We need different things at different times and each doctor has his own point of view and way of treating. We, as the patient, need to determine when our LLMD has out lived their usefulness for us.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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sutherngrl
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Member # 16270
posted
Don't freak out Seek. I smelled the horrid smell of a dead rat for over a year. It would come and go, but it was awful. I would almost want to gag sometimes.
With treatment I have finally gotten rid of that awful smell. And I didn't need IVs to do it.
I also had balance issues. I was always bumping into things and dropping things. I use to reach for something and miss it or go to scratch my nose and miss that. All these things are scary, but oral antibiotics got rid of these for me and for others.
These are common things with LD. So don't get too nervous. You will get better in time. It just takes a long time!
Are you taking a med that crosses the BBB? I still stand by... the best med for me so far, has been low dose doxy. It is working for me. Nothing has been as effective and I have taken..... Zith, Flagyl, Diflucan, Biaxin, Minocycline, Plaquenil and Malarone...and other various things on the side.
However, I will say that maybe it was the taking of all of these that in the end will add up to the cure. But Doxy is the one that is showing me some slight improvement.
I think it is all about time. Time to me is the answer to the cure. Not huge doses that are hard to endure, not IVs, not a million meds at one time.....just plain ol time. Keep hitting the ketes and eventually they die.
This is just my opinion, doesn't mean it is right! So don't beat me up!
Hope you feel better soon!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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cactus
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Member # 7347
posted
Hope my reply above did not imply that I don't think IV abx are the best option - I do think they are the best, fastest way to health.
However - since you said that you'll "never" get IV abx - it sounds like that option is out for you.
It is possible to get well without IV abx, using orals. I know this firsthand.
However - it does take a long time.
sutherngrl, [shudder], I smelled that horrible smell also - it was horrific. A year of Ketek got me past it.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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sutherngrl
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Member # 16270
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OMG Cactus, I'm sorry you had to smell that too. It was so disgusting!
Seek, I don't mean to imply that IVs are the wrong way to go. I just know too many ppl that got well without going that route, and I know ppl that went that route and it still took years to get well.
I just know that whatever way you choose to treat, it takes TIME to get well.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I have to agree. I know in my heart there is little way to get my life back w/o this treatment. I also know Dr. H in NY is my only hope realistically. He costs a fortune, but to date none of my docs have been good enough. I've let this infection spread for 2+ years by nodding my head to wrong treatment. I never even had Igenex co-infection testing. It saddens me.
I'm so tired of going into doctor appts and just having them nod their head when I tell them these horrid symptoms. He's your low-dose Zithromax or take low-dose Biaxin....etc.
SG, I have had few drugs that actually hit the BBB threshold as Doxy caused massive head pressure. Maybe it was working, but I was in seriously bad shape. My docs to date are not good enough to manage herxes either, do de-tox testing, or other means to better manage it all. THey want to 'save me money', but this genuine activity doesn't pay off I feel.
quote:Originally posted by Abxnomore: Seek all the symptoms you have point to neuro Lyme. They are classic neuro lyme symptoms, but that doesn't mean co-infections are not responsible for the symptoms, as well. IV ABX is the surest and fastest way to get a handle on that.
I am of the school that you need to treat this aggressively unless you want the illness to aggressively get you. You need a Dr.B protocol and approach.
If there is a fire you put it out as fast as you can, not slowly. I know there are different thoughts on this but I'm convinced that aggressive high doses of ABX both IV and Orals is the way to go.
Why would any one want to treat a brain infection slowly? I know some have bad herxes, etc., but a good LLMD will know how to walk you thru this stuff and the herxes and feeling like hell is what it takes to get over the hump.
Don't be scared, reaccess your treatment protocol and determine if it is right for you and if you need to make a change. Most of us go thru several LLMD's before we find the right fit and before we find what work for us.
We need different things at different times and each doctor has his own point of view and way of treating. We, as the patient, need to determine when our LLMD has out lived their usefulness for us.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Seek,
I had those odd smells for yrs, even when heading towards remission. ( cigarette/cigar smells) I also had 4yrs of oral antibiotics and 6 mos of IV antibiotics.
They were not working for me. I switched to antiparasitic herbs and salt/c as you probably know. I am not against antibiotics, but there are other ways to put this disease into remission.
P. S. Adrenal fatigue was one of my biggest symptoms. I have been using (still am) pantothentic acid b-5 for 20 yrs with excellent results. 500mg at a time. sometimes 3x a day.
It was suggested to me by a ND yrs ago. I know people say you should take b-complex also, but it has worked by itself for me without any problems.
On a humorous note, I thought my dead uncle who used to smoke cigars was visiting me from the other side.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
seekhelp I don't know the full story about why you can't see Dr. H. but I can make a educated guess.
Don't forget that many of these doctor's will use needy meds programs, if you qualify. They are a viable option. There are always options no matter how hopeless things looks.
If you are only going to use orals, then look at Dr. B's guidelines and look at the doses and which ones have the best BBB penetration. Mino is one, amox and doxy, but you have to have the high doses.
And don't forget about the cyst buster. I read that one of the findings coming out of the ILADS conference is that doxy and Tinidzole seems to be a good combo.
Don't lose hope, we all have been there. Just keep exploring your options. They are out there for even those in the most dire situations. I have seen others work magic and get care, even when they were almost homeless and on medicaid.
Hang in there and never give up.
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![[Frown]](frown.gif)
I'm starting to wonder if I'm worse off than I thought. Maybe all my swallowing issues, balance problems, etc. are cranial-nerve related. I'll never get iV Abx so I'm screwed.
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