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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
As for probiotics, no they don't only help your intestine, they help the immune system in your whole body.
reasons for not tolerating probiotics can be:
You're a bit lactose intolerant, they often have milk powder in them. Anyone who gets dodgy tummy from dairy will have this problem. and needs dairy free probiotics.
the other type of sugar they sometimes put in probiotics is fructose, super concentrated - the label often calls it FOS. People who tend to get diarrhoea from eating fruit will have trouble here. and wil need to get fructose free probiotics.
Also there's the yeats problem that Jackie explained, obviously you can find many probiotics that are yeast free.
reasons for not tolerating probiotics can be:
You're a bit lactose intolerant, they often have milk powder in them. Anyone who gets dodgy tummy from dairy will have this problem. and needs dairy free probiotics.
the other type of sugar they sometimes put in probiotics is fructose, super concentrated - the label often calls it FOS. People who tend to get diarrhoea from eating fruit will have trouble here. and wil need to get fructose free probiotics.
Also there's the yeats problem that Jackie explained, obviously you can find many probiotics that are yeast free.
Neptune, regarding the brain fog....
Is your classroom a bit stuffy? Personally, it helps me with brain fog if I can get fresh air. If you could wrap up warm adn sit in class near a slightly open window, it might help.
Also, have you spoken to your teachers about the lyme disease and the symptoms you're having? I got terribly ill with lyme when I was 16 and I told the teachers about it.
I made it clear that I did not want to fall behind on school work, but that the workload was really tough for me, and so I got absolutely amazing support.
When the teachers knew about my illness (even though nobody knew it was lyme disease) they worked out a special reduced homework schedule for me, other kids volunteered to help me out and the teachers photocopied some of their work to help me out.
If I were you I'd ask your Mum to make an appointment for you and her to talk to the teachers together to ask how they can help you.
I've done a lot of reasearch into brain fog and there are various things that can cause it. You have experiment a bit to find out what is causing yours. In some cases, you really can improve things a bit.
So here's the list:
1. lack of oxygen. Lyme somehow impedes the ability of the body to carry oxygen around, and also to use oxygen and make energy. When your brain isn't getting the oxygen you need, it gives brain fog. I have an oxygen tank at home and breathe that for about 20 minutes and it can be an amazing help.
Other thingsyou can do are, developing the habit of standing up adn waving your arms about to stimulate faster blood circulation. Also going outside as much as possible, where the air is always more oxygen-rich than indoors.
If you want to try and get home oxygen from your GP, the thing you need to know about lyme is this: When you are sitting and they measure the oxygen level in your blood, it's usually normal. When you exercise, it goes down adn down. So to prove to the doc you are low in oxygen you'd have to go out for a little run then return to the surgery adn get measured with one of those finger-clipo things as soon as you get back.
When they measured me they put me on an exercise bike and in 2 minutes my blood oxygen went from 97% (which is the bottom level that's considered OK) to 80%, which is low enough to get doctors really worried.
2. Oxidative stress. Since you don't use oxygen properly with lyme disease, you get reactive oxygen in your body, going around causing damage. You feel this as muscle aches, general yuckiness inside, and brain fog.
it's really easy to sort this out by taking glutathione. You must buy Jarrow Reduced glutathione, it's the cheapest one that actually works. Many brands don't work - I've tried them all!
3. Not drinking enough water. You get a massive accumulation of toxins because borrelia produce them so much, and this fills your brain with muck. You need to drink lots of water, it's the only way to get the stuff out. My doctor told me to aim for 6 litres a day.
Is your classroom a bit stuffy? Personally, it helps me with brain fog if I can get fresh air. If you could wrap up warm adn sit in class near a slightly open window, it might help.
Also, have you spoken to your teachers about the lyme disease and the symptoms you're having? I got terribly ill with lyme when I was 16 and I told the teachers about it.
I made it clear that I did not want to fall behind on school work, but that the workload was really tough for me, and so I got absolutely amazing support.
When the teachers knew about my illness (even though nobody knew it was lyme disease) they worked out a special reduced homework schedule for me, other kids volunteered to help me out and the teachers photocopied some of their work to help me out.
If I were you I'd ask your Mum to make an appointment for you and her to talk to the teachers together to ask how they can help you.
I've done a lot of reasearch into brain fog and there are various things that can cause it. You have experiment a bit to find out what is causing yours. In some cases, you really can improve things a bit.
So here's the list:
1. lack of oxygen. Lyme somehow impedes the ability of the body to carry oxygen around, and also to use oxygen and make energy. When your brain isn't getting the oxygen you need, it gives brain fog. I have an oxygen tank at home and breathe that for about 20 minutes and it can be an amazing help.
Other thingsyou can do are, developing the habit of standing up adn waving your arms about to stimulate faster blood circulation. Also going outside as much as possible, where the air is always more oxygen-rich than indoors.
If you want to try and get home oxygen from your GP, the thing you need to know about lyme is this: When you are sitting and they measure the oxygen level in your blood, it's usually normal. When you exercise, it goes down adn down. So to prove to the doc you are low in oxygen you'd have to go out for a little run then return to the surgery adn get measured with one of those finger-clipo things as soon as you get back.
When they measured me they put me on an exercise bike and in 2 minutes my blood oxygen went from 97% (which is the bottom level that's considered OK) to 80%, which is low enough to get doctors really worried.
2. Oxidative stress. Since you don't use oxygen properly with lyme disease, you get reactive oxygen in your body, going around causing damage. You feel this as muscle aches, general yuckiness inside, and brain fog.
it's really easy to sort this out by taking glutathione. You must buy Jarrow Reduced glutathione, it's the cheapest one that actually works. Many brands don't work - I've tried them all!
3. Not drinking enough water. You get a massive accumulation of toxins because borrelia produce them so much, and this fills your brain with muck. You need to drink lots of water, it's the only way to get the stuff out. My doctor told me to aim for 6 litres a day.
Sounds like you are carrying a lot between Lyme and classes and life -- but you are plowing ahead, and that's all that can be done by anyone! Take care, rest when you can, drop in when you're online. Best wishes --
Thank you all for the suggestions on supplements and stuff! Sorry it took me so long to respond I've been dealing with a lot and have been so busy with school.
Since I read your posts I've gotten some magnesium supplements (235mg tablets) and am going to take one of those a day since looking at my diet I really don't think I get much magnesium so maybe that will help with some of the brain fog and mental cloudiness like you guys suggested.
I already take Vitamin C daily as I know that's good for immune health so I'll continue to take those as well. As for the probiotics I've always been a little weary of taking them especially since some people in my family really didn't react well to them. I don't really have any GI issues, if I understand correctly that's what the probiotics help with. But I'll go ahead and look into those and see about trying some anyway.
I'm still feeling pretty under the weather but the most troublesome symptom for me is still mental cloudiness / brain fog and fatigue. I feel like like I'm impaired almost the feeling you get when you've had a little too much to drink. I guess that's from the Lyme :/. But other than that everything's staying about the same though I should probably try to get more sleep lately as every other day I end up only getting only 5 hours cause of school.. that can't be helping..
Anyway thank you all for your amazing help :) you've all been so great in helping me figure things out. I'll keep posting and let you guys know how everything's going. Hope you guys are doing well!
Thanks again!
Since I read your posts I've gotten some magnesium supplements (235mg tablets) and am going to take one of those a day since looking at my diet I really don't think I get much magnesium so maybe that will help with some of the brain fog and mental cloudiness like you guys suggested.
I already take Vitamin C daily as I know that's good for immune health so I'll continue to take those as well. As for the probiotics I've always been a little weary of taking them especially since some people in my family really didn't react well to them. I don't really have any GI issues, if I understand correctly that's what the probiotics help with. But I'll go ahead and look into those and see about trying some anyway.
I'm still feeling pretty under the weather but the most troublesome symptom for me is still mental cloudiness / brain fog and fatigue. I feel like like I'm impaired almost the feeling you get when you've had a little too much to drink. I guess that's from the Lyme :/. But other than that everything's staying about the same though I should probably try to get more sleep lately as every other day I end up only getting only 5 hours cause of school.. that can't be helping..
Anyway thank you all for your amazing help :) you've all been so great in helping me figure things out. I'll keep posting and let you guys know how everything's going. Hope you guys are doing well!
Thanks again!
It sounds like there's some hope in going to KU! There are the occasional places where doctors who are not enslaved to orthodoxy are willing to look beyond the test results. The irony is that even the CDC now is saying that a negative does not exclude it. The Johns Hopkins study on testing that I found on the drjoneskids website also states that Lyme is primarily a clinical diagnosis that doesn't require positive blood tests. Strange, considering that's not what's happening out in the real world.
I also encourage you to ask KU if you can get on a cancellation list to come in on short notice, assuming that's possible for you. Some places don't have cancellation lists and are willing to take your call once a week to ask if any have come up. (The ID office at my nearby AFB hospital made it very clear that they would not try to get me in earlier, nor did they want me calling to ask.)
I take Klaire Labs Complete probiotics and they have worked really well. I've known a couple non-Lymies who see naturopaths and they've also been told Klaire Labs is the best. I get them on Amazon. They're shipped with an ice pack. Don't bother with the kind that isn't refrigerated. They're just not effective enough.
Addt'l thoughts on supplements. Definitely take Vitamin D. Nearly all Lyme patients are low in it. It is necessary for good immune function. I take 5000-6000mg per day. An MS specialist I saw said I could take up to 10,000mg a day with no problem.
You might also look into the Cowden Protocol. Many people have seen improvement from some or all of it. Samento and Banderol are the two best known anti-Lyme herbals. You could also look into detoxing possibilities, such as Chlorella or activated charcoal. Even Parsley extract is helpful. A Lyme infected body tends to build up toxins, both biological and environmental, which results in an even sicker patient.
Regarding your doctors comments about testing: He is quoting what he's heard in medical circles, that so-called private labs are unreliable. But what he fails to realize is that you're talking about a standard test, the Western Blot. This isn't a private lab-only test that no one else can verify. They had to get approval by the CDC in order to offer the test, which means they had to pass multiple rounds of audits. The CDC would never allow a lab to do their own thing and call it a "Western Blot."
IGeneX's Western Blot is actually more advanced as they use two strains of Borrelia to compare to the patient's antibodies. Nearly all other labs just use one.
If you sent three vials of your blood drawn at the same time to three different labs, you'd probably get three different WB results. If you sent your blood once a month to the same lab, you'd probably get different results each time. It is a well known fact of Lyme that antibodies vary over time, as do the bands that show up on the WB.
I also encourage you to ask KU if you can get on a cancellation list to come in on short notice, assuming that's possible for you. Some places don't have cancellation lists and are willing to take your call once a week to ask if any have come up. (The ID office at my nearby AFB hospital made it very clear that they would not try to get me in earlier, nor did they want me calling to ask.)
I take Klaire Labs Complete probiotics and they have worked really well. I've known a couple non-Lymies who see naturopaths and they've also been told Klaire Labs is the best. I get them on Amazon. They're shipped with an ice pack. Don't bother with the kind that isn't refrigerated. They're just not effective enough.
Addt'l thoughts on supplements. Definitely take Vitamin D. Nearly all Lyme patients are low in it. It is necessary for good immune function. I take 5000-6000mg per day. An MS specialist I saw said I could take up to 10,000mg a day with no problem.
You might also look into the Cowden Protocol. Many people have seen improvement from some or all of it. Samento and Banderol are the two best known anti-Lyme herbals. You could also look into detoxing possibilities, such as Chlorella or activated charcoal. Even Parsley extract is helpful. A Lyme infected body tends to build up toxins, both biological and environmental, which results in an even sicker patient.
Regarding your doctors comments about testing: He is quoting what he's heard in medical circles, that so-called private labs are unreliable. But what he fails to realize is that you're talking about a standard test, the Western Blot. This isn't a private lab-only test that no one else can verify. They had to get approval by the CDC in order to offer the test, which means they had to pass multiple rounds of audits. The CDC would never allow a lab to do their own thing and call it a "Western Blot."
IGeneX's Western Blot is actually more advanced as they use two strains of Borrelia to compare to the patient's antibodies. Nearly all other labs just use one.
If you sent three vials of your blood drawn at the same time to three different labs, you'd probably get three different WB results. If you sent your blood once a month to the same lab, you'd probably get different results each time. It is a well known fact of Lyme that antibodies vary over time, as do the bands that show up on the WB.
Yes, good advice from Jackie about avoiding yeast to be on the safe side. I used to have really bad problems with it, though noting as bad as Jackie had. I am fine with yeast now that I've had a ton of antibiotics and got my intestinal flora much healthier.
BTW Neptune, please stay in touch and let us know what you decide and how you get on, OK?
Good luck with it all.
BTW Neptune, please stay in touch and let us know what you decide and how you get on, OK?
Good luck with it all.
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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.