Discussion in 'Lyme Disease and Co-Infections' started by Sushi, Mar 3, 2014.
The CDC haven't summarily dismissed it as far as I know. This was new research wasn't it?
Well, this doesn't exactly sound like "Wow, cool new research avenue for us to explore to me...it sounds pretty dismissive of it in general.
I missed that. Sounds perfectly reasonable to me. But at least they are now aware of it. And I am sure the community will keep them on top of it.
Well, I do not see why it would be useful to know the answer to whether or not it is sexually transmissible. People who are sexual partners almost always live in the same area, an area more or less infested by ticks. Why is it important to know how they caught it?
Why spending $$$ for that? We'd better spend the money on CFS/ME treatments.
I caught it 20 years ago, far away from where I live now with my fiance. So I think it would be nice to know. And many people get infected while on vacation, or living somewhere else, or taking walks in the woods, versus hanging out at home. It also means that infections in partners would be caught earlier, even if they had never been bitten by a tick, yet had symptoms and an infected partner.
I also have no 'typical' lyme symptoms. some say it depends on the strain of borrelia. basically, chronic lyme and CFS are one and the same, I think - both with big autoimmune components.
I haven't the slightest idea where on earth I could have caught lyme. I suspect that if I am positive, most people must carry it. they have never done a study using LTT testing to see what percentage of the population is positive, to my knowledge. if there is one, please let me know!
In my view, this is a non-issue. If people have the symptoms, they should be tested and treated. In any event, in many cases, people do not remember a bite, and this is now an accepted fact in the medical community (even amongst those who do not believe in chronic Lyme).
It seems to me from your post that research should be funded to show doctors that they are wrong in not diagnosing more quickly. Instead, and it is my opinion only, we should spend the money in educating them and in encouraging systematic testing as soon as Lyme-type symptoms appear. It would be more cost-effective, and we would avoid the permanent confrontation with them. Because in that fight, we, the patients, are always the losers.
@Daffodil hi you were positive to LTT? if yes hich were your scores? and did u run other test for lyme?
The sicker a patient is sometimes it can create a higher chance of false negative, though if you have any antibodies in the test it does not matter the scores, it means there is an infection that has created antibodies.. Or in the case of blood smears looking for spirochetes any spircohete alone is indicative of active infection.. Do not focus on the tests too much outside of the fact in testing positive at all and treat it! lol
@Martial you are so kind and also very handsome if i can tell you (hope you're not homophobic ) and i really apreciate the answers you gave me here and in private. I understand your point of view but the doctor that should treat me will not recieve me until about one month so in the mean time i'm trying to make comparison between my experience and the one of others.
i talked to many doctors about lyme and not only the ones who believes in CDC criteria. Testing can be misleading sometimes and if you also think that LTT is not even ever mentioned by ILADS doctors, well you can understand why i play the devil's advocate.
In these 8 years many times i made tests and have been said to have found the holy graal of all my complaints ...
But don't worry i have already an appointment with a lyme doctor and not one of the stupid-ones
I'm positive for the LTT and negative for another test, but don't know wether it is western blot or antibodies, should look it up.
DML starts wich antibiotics untill you have some degree of functioning (like part time working), then he continuous with samento/ banderol ( + biofilm defense ).
My symptoms are mainly fatigue and brain fog. I think i only have a mild degree of PEM, less then most other people with cfs. No abdominal complaints or any kind of pain, no POTS.
I don't know my LTT scores by heart (results are back home) but it was clearly positive. One- the highest one- was about 10, but i can't remember the others. My latest NK count was ... 16.
hi joshi. I was a "+4" on the LTT, if I remember correctly...but I have had CFS for over 20 years, so I wonder if this makes a difference with the lower test scores.
I also had high IgG to Bartonella. I think KDM checks for different strains because I was always negative for everything when tested several times in the USA. I did not even have 1 band positive or anything...just totally negative, even at Igenex.
Okay Joshi! I understand sounds like you are doing everything right and receiving good treatment! Let me know how it goes for you, also I understand your skeptic attitude that is actually very important! It is vital you listen to your own gut instinct well before the advice of others! And no I am not homophobic, thanks for the compliment! haha
Yes ... but in the real world, being "tested" before you know the diagnosis would be extremely expensive. Lyme symptoms are both varied and overlapping with symptoms of other diseases. Unless you or your doctor is psychic, it's nice to have some data to help narrow things down, like: "You're at increased risk of having Lyme because your boyfriend has it. Let's test for that first."
Even if a risk of transmission is found (far from sure and in all current likelihood very weak), that reasoning can backfire too. Doctors' reasoning will then be "Mrs A cannot have Lyme because she does not live in an endemic area and in any event her husband does not seem to be ill with Lyme. If she had Lyme, he would be ill too according to research X, especially after so many years. So let's not test".
I bet the reasoning will be applied over and over again, especially in a world where medical funding is increasingly more limited... Because nobody will read the result of the research as "Lyme sexual transmission in 0.0001% of cases". People will read, "Lyme is sexually transmissible" and everybody will think, "ha! like Aids" (see this very thread). So, each time a partner does not seem to be ill, then Lyme will be automatically excluded.
So, in my opinion, we are talking here about a very hypothetical risk that all in all would bring mixed diagnosis value at best.
Yes, that won't change. That is exactly how the situation is now, except that currently a partner of someone diagnosed with Lyme also will not get tested, when they present with same vague symptoms of Lyme. But if there is research showing it's transmissable, then the doctor of the Lyme patient can at least inquire about the partner, or warn about transmission. Or the doctor of the undiagnosed patient can ask if their partner has Lyme.
It's a small piece of the puzzle, which can help in determining a diagnosis. Every piece helps.
You can also try a Google Site Search
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