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Who's a Lyme patient to trust?
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Who's a Lyme patient to trust?

8850425?1360996506
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!

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Neptune, while waiting for the doc, the following supplements will very likely give youa bit of symptom relief:

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.
21 Comments Post a Comment
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Avatar_f_tn
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.

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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.
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Avatar_f_tn
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!
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Avatar_m_tn
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 :)
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What kind of doc are you going to see?
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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.


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Avatar_m_tn
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?
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Avatar_m_tn
And Thanks! I'll go ahead and email them and see if they have another referral.
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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.  
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Avatar_f_tn
Neptune, while waiting for the doc, the following supplements will very likely give youa bit of symptom relief:

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.
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Avatar_f_tn
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.
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Avatar_f_tn
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.
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Avatar_f_tn
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.
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Avatar_m_tn
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!

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Avatar_f_tn
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 --
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Avatar_f_tn
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.
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Avatar_f_tn
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.
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Avatar_f_tn
Anyway, good luck with everything. I'm sorry to hear the problems you're having, it makes me remember myself as a poor teenager suffering so much and so unfairly.
The main thing is, tell people what you're going through and ask for their support.
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Avatar_f_tn
Sleep is hugely important.  Less than six hours has been proven to immediately reduce mental clarity and adversely affect the immune system.  By "immediately," I mean the next morning.  It doesn't require an extended period of reduced sleep to take its toll.

Do whatever you need to do to get 7-8 hours a night. This is one of the primary things my doctor said he required as part of my treatment protocol.  It will give your immune system a better chance to fight back and slow down your disease progression.
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.... and Rico:

thanks for the practical tips.  I've copied them all down 'just in case'.
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Neptune296...
I have been to my doc. Lyme test where run on me they come back neg. But my systems from all the research I have done tells me it is lyme...she put me on antibiotics before the test was run for 27 days..I was starting to feel better and I told her I was feeling better..but when the test came back negative she took me off antibiotics. .I have been getting sick for over 4 months now..I didn't want to go back to feeling so sick like I had been feeling so I went to the health food store and got some collidial silver the has 500 ppm...I am taking that because it is a natural antibiotic... I am still improving and not going backwards.i have taken Collidal silver for different things that I have been sick with and needed antibiotics it worked for those things...I do feel better...

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