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Who has developed a bloodhound sense of smell since getting CFS?

Messages
90
Those electric jolts are a surefire lyme symptom and I don't know of any other illness that causes them. The initial flu is also typical if stage 1 lyme.
As you said, Elisa it not reliable.
You could ask your doc for a Western blot and insist on heving the printout of all reaults adn all bands, but again, if it is not done by a good lab it could be another unreliable test (some labs don't bother to test all bands).
If you can afford it go straight to Igenex, or else, get an ILADS recommended lyme doc and let him advise on the lab.

Thanks for the advice, will ask my GP tomorrow. I don't think he will do this, I live in London, UK. If the Elisa is negative, in general, they don't pursue!! I will phone and ask. If its lyme, is it possible to treat it so it does not become chronic? I would not take antibiotics, intolerant, I would use other methods, such as making the system stronger, by taking various supps etc.. I use to belong to LD forums years ago, a DMF showed Borrelia Burg floating around...
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
A good lyme lab is Infectolab in Augsburg, Germany. They offer discount (if you ask for it) till end of July because of the Lyme conference in Ireland.
 
Messages
90
A good lyme lab is Infectolab in Augsburg, Germany. They offer discount (if you ask for it) till end of July because of the Lyme conference in Ireland.

Do they other possible co infections such babesia, bartonella, Erchilichia (can't remember the spelling),
and also, do they show all bands? I forgot everything I read years ago, when BB were find on DFM.
Will the GP accepts their tests, if positive? I live in London, UK?
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
@ quirky

they do testing for co-infections. First you have to answer an extensive list of questions. Based upon your replies do offer the testing. For technical details, please contact them directly.
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
Do they other possible co infections such babesia, bartonella, Erchilichia (can't remember the spelling),
and also, do they show all bands? I forgot everything I read years ago, when BB were find on DFM.
Will the GP accepts their tests, if positive? I live in London, UK?

They do test for all the tick borne coinfections, but I've been told they don't use that questionnaire any more. But still ask, that may have been wrong. It guided me to gest tested for three infections I was positive for, that I had never even heard of.

I don't know what the UK GP would make of their results, but on a global scale they are regarded as the best lab in Europe and their testing technology is used by labs in the US too, so they are among the global leaders in lyme disaese testing. Your GP would have to more pig-headed than the usual to say he doesn't trust their results!

If you are against antibiotics, you should go to Dr Nicolaus of the BCA, he collaborates very closely with Infectolab.
www.B-C-A.de
He is one of the leaders in treating lyme with herbs.
If you want to avoid the infection going chronic, I would open your mind to blasting it with antibiotics.
I tried strengthening my immune system taking supplements for 26 years, that doesn't work unfortunately! It's just an essential backup to antibacterial treatment. The alternative to abx is herbs. There are some good reasons for choosing herbs only, and some bad ones. You need a meaningful conversation with the doctor about all antibiotics you have tried and what they did to you, so he can unravel whether you were having a herx reaction, an adverse reaction to the drugs, or something else. This info is also useful to him for diagnostic purposes. There may be some antibiotics that are fine for you. If not, the doc can put you on a herbal programme - he knows all of them and also has his own herbal programme, which I am on now.

He has a long waiting list for new patients so I'd advise you to get on it as soon as possible.
 
Messages
90
They do test for all the tick borne coinfections, but I've been told they don't use that questionnaire any more. But still ask, that may have been wrong. It guided me to gest tested for three infections I was positive for, that I had never even heard of.

I don't know what the UK GP would make of their results, but on a global scale they are regarded as the best lab in Europe and their testing technology is used by labs in the US too, so they are among the global leaders in lyme disaese testing. Your GP would have to more pig-headed than the usual to say he doesn't trust their results!

If you are against antibiotics, you should go to Dr Nicolaus of the BCA, he collaborates very closely with Infectolab.
www.B-C-A.de
He is one of the leaders in treating lyme with herbs.
If you want to avoid the infection going chronic, I would open your mind to blasting it with antibiotics.
I tried strengthening my immune system taking supplements for 26 years, that doesn't work unfortunately! It's just an essential backup to antibacterial treatment. The alternative to abx is herbs. There are some good reasons for choosing herbs only, and some bad ones. You need a meaningful conversation with the doctor about all antibiotics you have tried and what they did to you, so he can unravel whether you were having a herx reaction, an adverse reaction to the drugs, or something else. This info is also useful to him for diagnostic purposes. There may be some antibiotics that are fine for you. If not, the doc can put you on a herbal programme - he knows all of them and also has his own herbal programme, which I am on now.

He has a long waiting list for new patients so I'd advise you to get on it as soon as possible.

Thanks for the info. I phoned several times, and was asked to phone
back on Monday, to speak to a Dr......
I lost their website, and for some strange
reason, can't find it. Oh, well, will keep trying.
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
Thanks for the info. I phoned several times, and was asked to phone
back on Monday, to speak to a Dr......
I lost their website, and for some strange
reason, can't find it. Oh, well, will keep trying.

I've just been told you can get the questionnaire either from the BCA (www.b-c-a.de) or infectolab, which does the testing (www.infectolab.de).
Generally, you get faster answers if you email a clear question rather than wait for the Doc - he's terribly busy!
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
addendum: when I was sick for a week recently, I one day opened a bread wrapper that had two slices left. I could immediately smell the bread mold, though when I looked at the bread there wasn't much visible. The smell was kind of... somehow nice. It didn't smell good as in the way that good food smells, but it was nice nevertheless.
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
I get sick of the smell of a sandwich bar in a hospital. Bweerk just the smell of cheese, ham and these sandwiches wrapped up in plastic. I can distinguish odours like seeing colours in a picture. Pretty sure animals (and our ancestors) can (could) distinguish good from toxic food that way.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Wow, bumping this because it's fascinating.

I know exactly what @Marlène means about sandwich bars being gross. Meat and cheese that are fresh and high-quality smell quite good to me (you know, in a... food way) but low quality meat and cheese that's been left to sit out smells chemical-y and unpleasant to me. It's hard for me to imagine anyone being drawn in by that smell.

My sense of smell and actually hearing has always been insane. My students would whisper at the back of the room, "...do you think she means the hydrogen?" and I'd say, "No, Norah, I mean the oxygen atom, here" and they'd always be all DO YOU HAVE SUPERPOWERS, which was fun. Although maybe that's a teacher thing, and being required by law to have Eyes in the Back of Your Head. ;)

Still, my sense of taste and hearing is NOTHING compared to what some of you guys are talking about. I can tell far earlier than other people if food is going bad, and can't understand how they can't taste/smell it, themselves, but I can't smell dog pee after the rain! Cigarette smoke seems to be what I'm most sensitive to. Once I was driving on a highway and someone drove past us and I coughed. "Geez, I wish they'd do that with their windows closed." My friend said, "they did have their windows closed," and I replied, "well they're smoking." Which I guess anyone should be allowed to do in their own car with their own windows closed! It was surreal. They got off ahead of us at our exit and I could see that they were, in fact, holding a cigarette, so it wasn't, you know, a stroke.

Man, the fake-flowers laundry + B.O. still present is absolutely awful. I share a laundry room with my cousin's family that lives across the way, and needless to say they don't use the scentless stuff, and the laundry machine doesn't really work all that well (I actually use my mom's laundry room, across the way in the other direction.) So my apartment is directly above the laundry room, and when they do laundry that B.O. + overwhelming floweriness is so strong that I can barely stay at home when it's their laundry day.

Overall I, like my students, consider it a mini-superpower, but there are times when it actually becomes a real pain.

-J
 

Valentijn

Senior Member
Messages
15,786
The smell of the bread at Subway made me feel a bit sick, even pre-ME. But then they did add yoga mats to it, apparently :p
 

Valentijn

Senior Member
Messages
15,786
THAT'S EXACTLY WHAT IT SMELLS LIKE, @Valentijn ! :eek:
I've never been that close to Yoga mats (hippy allergy :cool:), but that's what the newspapers were saying a couple years ago. The chemical was being used for texture or something, and I think Subway was going to phase it out. Fortunately there aren't many Subways in the Netherlands, so I haven't been able to verify if they still stink.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
I call myself, "the nose that knows." I can smell too much.

Btw, I'd give anything for one of those Subway rolls. Being celiac. Gosh, I miss rolls, bread, etc.

I can smell things that no one can. Mold, cigs, glue, a perfume...and tell you which one it is, etc.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@Valentijn ... surely... no. I mean, that IS what it smells like - rubbery, and ... SURELY YOU'RE JOKING.

Hippie allergy? I don't know Valentjin, I have some hippie genes. Though they only express in the absence of other hippies.

-J
 

Valentijn

Senior Member
Messages
15,786
@Valentijn ... surely... no. I mean, that IS what it smells like - rubbery, and ... SURELY YOU'RE JOKING.
http://www.usatoday.com/story/money...oga-mat-chemical-almost-out-of-bread/7587787/ April 11, 2014:
Subway says a chemical also found in yoga mats will be completely phased out of its bread as of next week.

The sandwich chain has faced criticism and backlash since a food blogger petitioned Subway to remove the chemical earlier this year.

The ingredient azodicarbonamide can be found in a wide variety of products, including those served at McDonald's and Starbucks and breads sold in supermarkets. It's approved by the Food and Drug Administration for use as a bleaching agent and dough conditioner. But the petition by Vani Hari of FoodBabe.com gained attention after Hari pointed out the chemical is also used to increase elasticity in products including yoga mats, shoe rubber, and synthetic leather.

And I'm not allergic to hippies so much as ... hippy activities :p