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Who's a Lyme patient to trust?
Hi everyone I'm really not sure what to do as I'm so confused and being pressured by my GP to not pursue Lyme disease as a diagnosis. Now I can't even get them to authorize any further testing for co-infections. I've never in my life seen so much inconsistency and confusion around diagnosing a disease.
I recently got a positive IGeneX Lyme Result (attached image) and it seems pretty positive however I'm getting really confused on who to trust. My doctor says IGeneX is an unproven, private lab, and they have no way of knowing how their tests are performed, whether they're performed accurately, or how many false positives occur. He say's if I go looking for a specialist in Lyme they'll find Lyme whether its they're or not and that its a dangerous road to head down. I mean are my IGeneX results accurate?
To add to the confusion the exact same test, a western blot, was performed by my doctor and sent to Quest Labs. None of the bands except 41 IgG were found reactive and directly contradicts the results from IGeneX where IGeneX tested the same bands as Quest but found many more to be reactive (however the test for IGeneX was performed almost 4 months later). My PRC test from IGeneX was also negative (no DNA?). I don't even have any classic symptoms except fever, fatigue (malaise), muscle twitches, and mental cloudiness.
What is a patient to do? How do I know which test results to trust as they tested practically the same bands and came back with completely different results. How am I supposed to know whether to trust an LLMD or the CDC and my GP? How do I know that an LLMD isn't just seeing something that's not there cause that's all they can see?
Its so confusing and frustrating :( it seems at this point practically the only way to know if I have it or not is to just get on a "test" run of antibiotics from an LLMD to see if I feel better? Am I worrying too much? What should I do? What did you guys do?
Thanks :) you guys have been so helpful!
I recently got a positive IGeneX Lyme Result (attached image) and it seems pretty positive however I'm getting really confused on who to trust. My doctor says IGeneX is an unproven, private lab, and they have no way of knowing how their tests are performed, whether they're performed accurately, or how many false positives occur. He say's if I go looking for a specialist in Lyme they'll find Lyme whether its they're or not and that its a dangerous road to head down. I mean are my IGeneX results accurate?
To add to the confusion the exact same test, a western blot, was performed by my doctor and sent to Quest Labs. None of the bands except 41 IgG were found reactive and directly contradicts the results from IGeneX where IGeneX tested the same bands as Quest but found many more to be reactive (however the test for IGeneX was performed almost 4 months later). My PRC test from IGeneX was also negative (no DNA?). I don't even have any classic symptoms except fever, fatigue (malaise), muscle twitches, and mental cloudiness.
What is a patient to do? How do I know which test results to trust as they tested practically the same bands and came back with completely different results. How am I supposed to know whether to trust an LLMD or the CDC and my GP? How do I know that an LLMD isn't just seeing something that's not there cause that's all they can see?
Its so confusing and frustrating :( it seems at this point practically the only way to know if I have it or not is to just get on a "test" run of antibiotics from an LLMD to see if I feel better? Am I worrying too much? What should I do? What did you guys do?
Thanks :) you guys have been so helpful!
Best Answer
Thank you all for your help and input I'll go ahead and wait for my appointment at KU Med and hopefully get some kind of antibiotic challenge or trial / treatment.
My doctor has really thrown up his hands on the whole thing, he's been great trying to get to the bottom of it all with various tests but he hasn't found anything and just says I may have better luck with a specialist. So like you guys have said I'm positive and I'll just move on and hope for the best from another doctor.
I don't know what to do though since I'm gonna have to wait almost three months to make any progress and I'm really starting to feel sicker. I wake up exhausted, I still have a mild fever, and I feel like I have some kind of flu 24/7. Is there anything I can do in the meantime to help alleviate symptoms or maybe even help get rid of Lyme? Is it going to hurt my chances of recovery to wait a whole 3 months before getting treatment? I don't see any other way of getting anything before then?
Thank you all :)
My doctor has really thrown up his hands on the whole thing, he's been great trying to get to the bottom of it all with various tests but he hasn't found anything and just says I may have better luck with a specialist. So like you guys have said I'm positive and I'll just move on and hope for the best from another doctor.
I don't know what to do though since I'm gonna have to wait almost three months to make any progress and I'm really starting to feel sicker. I wake up exhausted, I still have a mild fever, and I feel like I have some kind of flu 24/7. Is there anything I can do in the meantime to help alleviate symptoms or maybe even help get rid of Lyme? Is it going to hurt my chances of recovery to wait a whole 3 months before getting treatment? I don't see any other way of getting anything before then?
Thank you all :)
As I read the scanned test results you posted, you got a positive result.
(Did you see the responses to your earlier test results that you posted a week or so ago (below)?)
Your doc is not an ILADS-kind of doc, so no matter what you do, you're not likely to persuade the doc to change his/her mind on how to interpret the test results. That's just not how things tend to play out in the Lyme world.
You say above: "I don't even have any classic symptoms except fever, fatigue (malaise), muscle twitches, and mental cloudiness."
That's like saying you're sure you weren't hit by a bus except that you've got big tire tracks across your back.
The doc is not going to change his/her core beliefs. Denial is not just a river in Egypt etc.
You have the test results, what you need to do now is take them to a doc who knows how to read them. You will not convert this doc, so move along. Go for it!
(Did you see the responses to your earlier test results that you posted a week or so ago (below)?)
Your doc is not an ILADS-kind of doc, so no matter what you do, you're not likely to persuade the doc to change his/her mind on how to interpret the test results. That's just not how things tend to play out in the Lyme world.
You say above: "I don't even have any classic symptoms except fever, fatigue (malaise), muscle twitches, and mental cloudiness."
That's like saying you're sure you weren't hit by a bus except that you've got big tire tracks across your back.
The doc is not going to change his/her core beliefs. Denial is not just a river in Egypt etc.
You have the test results, what you need to do now is take them to a doc who knows how to read them. You will not convert this doc, so move along. Go for it!
I didn't know I had Lyme for almost 20 years. It can do some damage. I was misdiagnosed with everything under the sun. My Dr was no help. With your results in hand, I would go to an LLMD and get treatment.
Your GP is wrong, an LLMD will not find lyme if there isn't any. There are very few Lyme aware GP's and even though it may be hard to leave, you want to be cured and the LLMD can get you on your way. You don't want to be like me,who couldn't walk for a while until treatment, because the Lyme and co-infections were in me so long.
Most of us went to many doctors until we found one who would treat us properly. The CDC is wrong right now. We follow the results of IgeneX test and we follow our LLMD . You can read articles on ILADS dot org for more info.
Your GP is wrong, an LLMD will not find lyme if there isn't any. There are very few Lyme aware GP's and even though it may be hard to leave, you want to be cured and the LLMD can get you on your way. You don't want to be like me,who couldn't walk for a while until treatment, because the Lyme and co-infections were in me so long.
Most of us went to many doctors until we found one who would treat us properly. The CDC is wrong right now. We follow the results of IgeneX test and we follow our LLMD . You can read articles on ILADS dot org for more info.
First off, I would take no notice of the GP as he is obviously not very knowledgeable of the difficulties with lyme testing. You get lots of false negatives because borrelia hide in biofilms, and also because the disease suppresses your antibody production.
A Western blot looks for antibodies only, whereas Igenex tests look for bits of DNA from the bacteria themselves. Therefore I think the different results you got are not actually conflicting at all - I would say they mean you have lyme, and your immune system is suppressed by it currently.
If you go to a lyme doc and do an antibiotic challenge, you will likely get a positive western blot after a couple of months of antibiotic treatment, my lyme doc does a follow up test on all patients. Even though mine was already positive, the next one was way MORE positive - and that is typical.
If your doctor is full of ideas about other tests to find an explanation for your symptoms, I would go along with him and see what he can find out. There are lots of illnesses that can cause the symptoms you have.
There's an excellent wikipedia article about many of them, do some research on this and talk to your GP about it if you want.
http://en . wikipedia. org/wiki/ Depression_(differential_diagnoses)
You're a young bloke (if that photo is you) and if you're disease-free, there's no reason you should feel anything other than full of energy and made of cast iron - that's what healthy young men feel like.
On the other hand, if your GP is just saying "Get lost there's nothing wrong with you", then he's a time waster, so don't waste more time trying to get help from him. Pursue your own diagnosis and cure independently of him.
A Western blot looks for antibodies only, whereas Igenex tests look for bits of DNA from the bacteria themselves. Therefore I think the different results you got are not actually conflicting at all - I would say they mean you have lyme, and your immune system is suppressed by it currently.
If you go to a lyme doc and do an antibiotic challenge, you will likely get a positive western blot after a couple of months of antibiotic treatment, my lyme doc does a follow up test on all patients. Even though mine was already positive, the next one was way MORE positive - and that is typical.
If your doctor is full of ideas about other tests to find an explanation for your symptoms, I would go along with him and see what he can find out. There are lots of illnesses that can cause the symptoms you have.
There's an excellent wikipedia article about many of them, do some research on this and talk to your GP about it if you want.
http://en . wikipedia. org/wiki/ Depression_(differential_diagnoses)
You're a young bloke (if that photo is you) and if you're disease-free, there's no reason you should feel anything other than full of energy and made of cast iron - that's what healthy young men feel like.
On the other hand, if your GP is just saying "Get lost there's nothing wrong with you", then he's a time waster, so don't waste more time trying to get help from him. Pursue your own diagnosis and cure independently of him.
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magnesium: Helps with muscle twitching and most of the mental problems. You start on 400mg a day and can go up to 900mg a day maximum. You need to take a form that ends in -ate, like magnesium orotate, magnesium citrate etc. Don't buy magnesium oxide, cos your intestine can't absorb it well and you'll likely got tummy upset from it.
Probiotics: aim to take 25billion live bacteria a day. You'll need to shop around as many products have nowhere near that dose, taking a lower dose doesn't have much effect.
This is the best possible way to help you immune system. In healthy people, 90% of the immune system is working in the intestine non stop, killing the bad bugs and helping the good ones stay alive. Ifyou take probiotics, you are giving your immune system a major helping hand, and freeing it up to go off and fight lyme disease around your body.
taking probiotics has made an enormous difference to me, but I cannot stress enough that you need good quality ones and you need a humungous dosage. There is no such thing as overdosing on probiotics.
Vitamin C: Everyone knows this is vitral for your immune system. It is also vital for makig energy as it keeps your adrenal glands working. They do overtime when you have an infection and lyme disease also makes a direct attack on them, so they need extra help. the third thing it does is keep your connective tissue together, lyme disease attacks this so again, lyme disease give you even more need for vitamin C.
Your body absorbs exactly how much vitamin C it needs, so here's how you find out your dose:
Start on 1000mg a day, after 3 days go up to 2000mg, and keep increasing the dose each 3 days till you get a bit of diarrhoea - go back down to the dose that you can take with no diarrhoea: that is how much you need.
You must buy a brand of C that says "buffered" on the label.
Also take a good multivitamin and mineral supplement as everyone with lyme disease ends up with various nutritional deficiencies no matter how much healthy food they eat.
These may sound like huge doses, but these are what my lyme doc prescribes to all his patients and they are absolutely safe for an adult of normal size.
Other things you need to do:
No alcohol at all
no caffeine, (no coffee or tea or coca cola and no chocolate). You can get decaf versions of all these except choclate, which destroys your hormone production in really terrible ways.
Go to bed at or before 10pm every night, I know that's dead boring but it will protect your hormone production. When lyme drags on, you end up with hormone deficiencies. I know from another forum that, for men this is particularly traumatic psychologically. (I won't spell it out, use your imagination).
If you are able to do any exercise, do it, but make absolutely sure that you do the same amount every day (don't go over teh top one day adn crash teh next) and always have a good rest right after you exercise.
I've had lyme disease for 28 years and I managed to work full-time for most of them by following these rules. It was tough at times but, if you've got self discipline, you should be able to sto pthis getting any worse while you wait for the doctor.