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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
Excellent approach from YouveGot.
The only caution I would throw in is about what kind of probiotic to take. My Lyme doc insisted on yeast-based probiotics, because they are not wiped out by antibiotics taken at the same time, but it turned out I am susceptible to the yeast colonizing on me, which was a bear to get rid of.
The yeast-based probiotics come in several brand names, but they all include Saccharomyces boulardii (aka S. boulardii). One well-known brand name is Florastor, but read the labels to be sure you know the ingredients, regardless of the brand name.
My Lyme doc wanted to be sure that long term antibiotics would not have the bad effect of wiping out all the good bacteria the gut needs, as YouveGot notes above, with nothing to replace it -- that can lead to big trouble. Many/most people seem to tolerate the Florastor-type yeast probiotics fine, but for those like me who are yeast-sensitive, it can lead to the yeast spreading throughout the blood stream and be difficult to get rid of.
The alternative to yeast-based probiotics like Florastor (which can be taken at any time without regard to when the antibiotic are taken) is to take bacteria-based probiotics, like acidophilus -- the only trick being that there needs to be a time window (I use 2 or 3 hours) after taking the acidophilus and before taking the antibiotic, so that the acidophilus has a chance to spread out in the digestive system.
Taking the probiotic and the antibiotic too close together means that the antibiotic just wipes out the probiotic (along with the bad bacteria), so you get no protective effect from the probiotic.
I don't know how common this sensitivity is, but it was a real problem for me, so thought I'd mention it. My doc said he had 'never' seen it happen before.
The only caution I would throw in is about what kind of probiotic to take. My Lyme doc insisted on yeast-based probiotics, because they are not wiped out by antibiotics taken at the same time, but it turned out I am susceptible to the yeast colonizing on me, which was a bear to get rid of.
The yeast-based probiotics come in several brand names, but they all include Saccharomyces boulardii (aka S. boulardii). One well-known brand name is Florastor, but read the labels to be sure you know the ingredients, regardless of the brand name.
My Lyme doc wanted to be sure that long term antibiotics would not have the bad effect of wiping out all the good bacteria the gut needs, as YouveGot notes above, with nothing to replace it -- that can lead to big trouble. Many/most people seem to tolerate the Florastor-type yeast probiotics fine, but for those like me who are yeast-sensitive, it can lead to the yeast spreading throughout the blood stream and be difficult to get rid of.
The alternative to yeast-based probiotics like Florastor (which can be taken at any time without regard to when the antibiotic are taken) is to take bacteria-based probiotics, like acidophilus -- the only trick being that there needs to be a time window (I use 2 or 3 hours) after taking the acidophilus and before taking the antibiotic, so that the acidophilus has a chance to spread out in the digestive system.
Taking the probiotic and the antibiotic too close together means that the antibiotic just wipes out the probiotic (along with the bad bacteria), so you get no protective effect from the probiotic.
I don't know how common this sensitivity is, but it was a real problem for me, so thought I'd mention it. My doc said he had 'never' seen it happen before.
Oh good! That sounds like a good bet, if IGeneX is on board. Whew.
But yes, press ahead on all fronts, and even see both docs (KU Med) and whoever a direct call to IGeneX turns up, if you can afford it. It's war: us against the bugz. (Can you tell I have a Planet of the Apes movie going in the background. Kind of affects the mood, but not inappropriately when it comes to Lyme, come to think of it.)
But really, make appointments in both places if you can pull it off, and/or ask to be put on a cancellation list, and tell them how long it will take you to get to KU so they will know if they have a cancellation on a [2 hr or whatever] notification, you can be there.
You're clearly focused on getting this project moving, and that is excellent. That determination will help you enormously.
But yes, press ahead on all fronts, and even see both docs (KU Med) and whoever a direct call to IGeneX turns up, if you can afford it. It's war: us against the bugz. (Can you tell I have a Planet of the Apes movie going in the background. Kind of affects the mood, but not inappropriately when it comes to Lyme, come to think of it.)
But really, make appointments in both places if you can pull it off, and/or ask to be put on a cancellation list, and tell them how long it will take you to get to KU so they will know if they have a cancellation on a [2 hr or whatever] notification, you can be there.
You're clearly focused on getting this project moving, and that is excellent. That determination will help you enormously.
I'm going to see a doctor in Integrative Medicine (kind of like alternative medicine I guess) at the KU Medical Center in Kansas City. I was referred to them by a receptionist at IGeneX, they said they use their labs regularly and are Lyme Literate. So I guess that would be the right doctor to go to considering they use IGeneX a lot so they're bound to believe the results I've received.
Its just its going to be a three month wait and what if I'm just getting Lyme it could turn into chronic Lyme or make my treatment much harder by then? Or is three months not that significant when dealing with Lyme?
Its just its going to be a three month wait and what if I'm just getting Lyme it could turn into chronic Lyme or make my treatment much harder by then? Or is three months not that significant when dealing with Lyme?
Rather than my vague question just posted, let me be blunt:
Large medical centers are often bastions of politically correct thinking, and unless you are very lucky and find a place like the Lyme research center at Columbia U in NYC, you will not get cutting edge advice. You will likely instead get more of what you have already heard.
Email to
contact [at] ILADS [dot] org
and ask for a referral in Kansas or wherever you can get to, depending on what part of Kansas you are in.
Large medical centers are often bastions of politically correct thinking, and unless you are very lucky and find a place like the Lyme research center at Columbia U in NYC, you will not get cutting edge advice. You will likely instead get more of what you have already heard.
Email to
contact [at] ILADS [dot] org
and ask for a referral in Kansas or wherever you can get to, depending on what part of Kansas you are in.
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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.