quote:

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Originally posted by thatjames1130:
So this is getting quite long, so I'll just end it with these couple of questions: how do I know if I DONT have Lyme? Should I get a second opinion from another Lyme Doctor, despite the high costs and my lack of money?

If it's not Lyme that's causing my depression, then what could be?

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quote:

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But, you don't mention anything about co-infection testing.

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Sorry, I should have specified. Yes, co infections were tested, and Bartonella was one of them. I gave the results to my psychologist so I don't have them with me right now. I'm gonna get them back so I can see exactly which coinfections were tested, as well as which lab she used. She also did a panel testing for nutritional deficiencies.
 

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Posted by Robin123 (Member # 9197) on :
 
The confusion re these illnesses is that people don't always test positive for them even though they have them. We don't have perfect tests, and that's being worked on.

So doctors often diagnose clinically, by history and symptoms, and try treatment based on such and see how it goes.

I think your symptoms sound like Lyme disease.

The more you study what the spirochete bacteria is like and what it does, the more you'll understand how to treat.

For example, muscle twitching can be due to lack of magnesium, which is used up by the bacteria. So we supplement with it. There's several kinds, and we need to find out which kind we respond best to. For example, I've responded best to malic acid and mg, and mg glycinate.

Re sore joints, I'm responding very well to taking turmeric, a natural anti-inflammatory. I get it in bulk at the health food store and dip 00-size capsules into it, and take a single pill a couple times a day. I notice that it relieves discomfort rather quickly.

Just saying this to let you know there's many ways that we can tackle symptoms, not only with the heavy-hitters like antibiotics, but also with natural anti-inflammatory supplements.

I suggest that you have some patience with the process - there's a lot to look at, you have the time, and you will improve as you find things that work for you.
 

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Posted by thatjames1130 (Member # 46830) on :
 
Yeah I'm not sure what's going on with the whole muscle twitching thing. I've been twitching for a while, but my panel showed normal amounts of magnesium (on the high end actually)
 

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Posted by Robin123 (Member # 9197) on :
 
Hi - I see you're on now! I am not a doctor so cannot respond well to your report that you show good to high level magnesium - I don't really know what that means.

All I know is that the bacteria use up our magnesium and our muscles are deficient.

Also, Lyme can cause anxiety. I had it in spades and they were always sending me to a psychologist and I was always telling that psychologist that I was in pain!

So, I am not a diagnosing doctor, but I do think you probably have Lyme disease, and what you are describing is normal for us.

I call it going to Lyme school to learn what to do. It takes a little bit of time to understand, as this is a complicated bacterium. But, it can be dealt with.

We do experiments with our bodies. I was undiagnosed for 25 years, throwing everything at my body as a person who had been diagnosed with fibromyalgia, so I actually have experienced what works and doesn't work for Lyme disease! lol -

So you could take the point of view of deciding if you want to experiment with a supplement for a specific symptom, like for example, magnesium for muscle twitching - I'd suggest doing one experiment at a time, to see if something happens.
 

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Posted by thatjames1130 (Member # 46830) on :
 
Thank you all for your speedy replies! I must ask this though. Is it possible that since this is a Lyme website, perhaps some may be slightly biased towards thinking certain things are Lyme? I kinda wanna know how to be sure I don't have Lyme.

Is it possible my depression could have come from my severe anxiety about the Lyme months ago? For example, if I get a second opinion and he still doesn't think I have Lyme, how can I be satisfied with the results?

I don't want Lyme in the back of my mind my whole life despite Lyme doctors reassuring me I don't have it. Ya know what I mean? I hope this didn't come off as hostile sounding.

(breaking up your post for easier reading for many here)

[ 10-14-2015, 12:06 AM: Message edited by: Robin123 ]
 

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Posted by Robin123 (Member # 9197) on :
 
Hi - I'm also a moderator here, and there are a lot of folks here who have a hard time reading more than a couple lines at a time, just to let you know -

Now I'll be responding more - give me a sec -

In answer to your question, it's the whole list of symptoms we look at, not just one or two.

You mention muscle twitches, heart palpitations, heart murmur, sore knee joint, anxiety, depression, numbness of feet and hands, restless leg syndrome - all that is a list for Lyme symptoms.

And you could have more you haven't thought about.

Medical Questions has a stickie at the top of it, called Important Information about Lyme and Co's - here's one of the links from it - I like it, because it's pretty comprehensive and you can peruse through the sections and see if you pick up even more symptoms.

One of the things I learned, in the beginning, was that some of what I had been experiencing for some time were actually Lyme symptoms. The bacteria can affect the entire body.

The other thing you can do with this is to look at co-infection symptoms, especially as another poster here is asking you about that possibility. I have found that we either match them or we don't. The main ones we usually check are babesia, bartonella and ehrlichia.

http://www.lyme-symptoms.com/LymeCoinfectionChart.html
 

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Posted by thatjames1130 (Member # 46830) on :
 
Thanks Robin123!

I'm just confused, because I was diagnosed with a heart murmur back in 8th grade (I'm a junior in college now). And the twitching has been a constant thing.

Restless leg is something I'm not even sure I have, just the easiest way to describe my symptom. Sometimes when I feel anxious, my right leg feels "weird" at night. Like I have to move it.

Idk, i just want some kind of peace of mind. What do I do if a second Lyme Doctor tells me I don't have Lyme?

I guess what I'm asking is, how can I tell once and for all if I do or do not have lyme?
 

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Posted by Robin123 (Member # 9197) on :
 
Just curious - do you know if your dad has had his symptoms lifelong, or more recently? If lifelong, parents can pass this to their kids. And if so, do not blame parents! They didn't know. Otherwise, you could both have been exposed wherever.

In my experience, with symptoms like yours, and let's say you don't get a positive test, Lyme-treating doctors would probably go ahead and check you out clinically with some kind of treatment to see how you respond.

In my case, when I went on antibiotics, all the pain I'd been in for 25 years went away in a week's time, and then in a month's time, I herxed, meaning there was a bacterial die-off, and I had to back down in the antibiotic dosage.

In answer to your question, we don't have a test that rules out Lyme. If someone gets a positive test, that's definitive. Like I tested positive after 25 years, but not everyone does.

In the absence of a positive test, but with symptoms, we usually try some form of treatment and see how we respond.
 

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Posted by Lymetoo (Member # 743) on :
 
The lab tests that doctors use to check our mineral status are really not the best tests. If you show up as low in magnesium on one of those, then you are REALLY low. Most of the time the tests say everyone is "fine" and they are not.

The best test for magnesium is the RBC blood test. http://requestatest.com/magnesium-rbc-testing

If it were ME, I would up the magnesium big time and see if it resolves the restless legs and the twitching. I used to have restless legs but don't have anymore trouble.

I got rid of two meds that were making it worse: trazodone and hydroxyzine and also upped my magnesium.

As for how to tell if you have Lyme or not, I think a second opinion would be a good idea. Or you could post your test results here and let us take a look at it.
 

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Posted by Lymetoo (Member # 743) on :
 
Me? Yes .. at least from Lyme and babesia symptoms. I went through 4 yrs of treatment.
 

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Posted by Robin123 (Member # 9197) on :
 
No, I maintain with mostly natural anti-inflams.

So, if your dad had it before you were born, it could have been passed to you. But, we don't know, and in the long run, doesn't make much difference, since you may need to treat anyway.

Also, you asked earlier whether we could be biased here. I was a member of so many other health support groups before I found out I really had Lyme. I can say that I never heard of another illness that can affect the body so comprehensively.

I guess that is due to the very nature of the bacteria, which can get into the brain and anything else they want to get into, and they can hide in oxygen-deprived areas - they're very stealthy.

That's why we need to learn about them and how they operate, to underatand how we tackle them. And we do, and improvement in health is possible.
 

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Posted by thatjames1130 (Member # 46830) on :
 
Sorry guys I'm new to these forums and I just accidentally deleted my comment while trying to edit it.

But yes, I think maybe I'll try to post my previous test results on this thread once I get them from my psychologist on Thursday.

If Lyme did cause my depression, what would be the best way to treat that? The twitching is more of a nuisance than an actual issue, but the depression has gotta stop. I feel as though I cannot enjoy anything.
 

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Posted by thatjames1130 (Member # 46830) on :
 
I also just wanna stop obsessing over the thought of this disease. I've always been a worrier and I don't want this thought pattern to control my life.
 

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Posted by Robin123 (Member # 9197) on :
 
Worrying is a symptom! I think we're either oxygen deficient, or we don't have the right balance of neurotransmitters! Or we don't clear them well. Or more explanations!

I'd suggest relaxing a little, if you can, because you have just landed yourself in the midst of a lot of very knowledgeable people who will help you through!

May I say, also - I think we get to learn a lot about health and how to maintain it, which is very useful info to have. So you could also look at it that way, as an opportunity to learn more about how to get and stay healthier. We look at everything!

Meds are probably going to be needed to treat the depression. Best done with a Lyme-treating doctor, I think.
 

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Posted by droid1226 (Member # 34930) on :
 
"She was very nice and professional. She gave me a THOROUGH physical exam (not the crappy short one I got from my GP). She then took my blood and sent it to one of her private labs, which supposedly is much more sensitive, with like a 90-95% accuracy compared to the standard ELISA and Western Blot, which have only about a 50-60% accuracy."


Who told you it was 90-95% accurate? If medicine had that precision for lyme, there wouldn't be a lymenet.org..... or a controversy for that matter.

ILADS meetings happen every year & by far the most crowded room is "testing"..They are constantly trying to find an accurate test to end all this political nonsense and suffering.

There's no lyme blood test that accurate. Only IGENEX if they take previously positive blood and re test it. But for a basic positive/negative result, it's still inaccurate unless it detects something.
 

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Posted by Judie (Member # 38323) on :
 
Here's a link for tests to run.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/127210

Also, have you ever taken cipro, levaquin, avelox or any fluoroquinolones?

They can cause those symptoms. Even just one pill can cause persistent injury.

http://www.askapatient.com/viewrating.asp?drug=20635&name=LEVAQUIN

http://www.askapatient.com/viewrating.asp?drug=19537&name=CIPRO
 

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Posted by TNT (Member # 42349) on :
 
I'm glad you've been tested for coinfections. But please remember, as I said earlier, testing is not always accurate (for various reasons), and a good Lyme doc will seriously take into consideration your overall symptoms and health and diagnose and treat BASED ON SYMPTOMS. It's how it's done.

As I said, even the CDC says these diseases are a clinical diagnosis once other possibilities are ruled out.

I didn't want to mention this at first because I didn't want to confuse you, but many of these diseases are congenital, and there is a strong possibility you had it even from birth, based on your dad's symptoms and diagnosis. Trust me, I/we see this a lot.

But like Robin said, it's not relevant, and it's not your dad's fault. It's the CDC's, IDSA's, and government's fault! But that's a whole different subject.

Actually, it may be relevant, because if it was passed to you, you may want to look especially hard at what your dad has tested positive for and keep those infections in mind as a possibility for yourself in spite of your negative tests.

Another test that is not definitive or diagnostic, but is helpful, is Labcorp's CD57 test. It is useful info for a good Lyme doc, especially if it is low. If low, your body is definitely being attacked by an infection (two infections that are KNOWN to lower those counts are HIV and Lyme disease).

Another idea is to find someone who looks at blood. Some natural practitioners do live blood microscopy and they can sometimes see if there are spirochetes in the blood. Or, you could look for yourself if you have access to a decent microscope. If either of these are possibilities, or if it interests you, you could check out the microscopy thread:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/120458

But, please realize that information gleaned by this technique is not something that a medical doctor is going to be able to use as proof because of our current medical climate. In many states it's illegal for a licensed medical professional to use microscopy at all!!! It is considered "psuedo-science" by the establishment. But, be assured, spirochetes are NOT supposed to be in your blood.

The only other test that your doc could run would be the Lyme culture test from Advanced Labs in PA. It's expensive, but it is the GOLD standard as far as licensed testing goes. Your doc should know about it and be able to do it for you. If positive, they even send you a picture of the spirochetes.

http://www.advanced-lab.com/
 

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Posted by TF (Member # 14183) on :
 
I know a few people who were tested for lyme disease and they do not have lyme.

I looked at their test results. They were all negative. That means, the result next to each individual band was a minus sign (-).

That's what the test results look like if the person doesn't have lyme. Or, you could have one plus sign (+) next to band 41 which can be the result of gum disease (which this person had).

So, I would advise you to not give your test results to anyone again. Let doctors make copies but you ALWAYS keep your test results. These are very important documents.

When you get your results back, look at them. Post them here. If you have a negative sign next to each band of the Western Blot, then you most likely don't have lyme disease.

But, as the others have said, there really is no accurate test for lyme, so doctors make a tentative diagnosis based on symptoms and test results and medical history. Then, they give you some lyme treatment and see how you respond. If you respond, then that proves you have lyme.

You can read all about how to diagnose lyme and the symptoms for it in the Burrascano Lyme Treatment Guidelines found here:

http://www.lymenet.org/BurrGuide200810.pdf

Page 7 tells doctors how to diagnose it. This document also discusses how inaccurate the testing is for all of these diseases.
 

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Posted by thatjames1130 (Member # 46830) on :
 
Thanks everyone for your responses!

So I'm wondering, if tests are so inaccurate, why even use them at all?

Dr. G seemed very knowledgeable about the disease, yet she used my tests results as her primary diagnostic tool.
 

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Posted by MichaelTampa (Member # 24868) on :
 
please edit out doctor's name
 

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Posted by unsure445 (Member # 15962) on :
 
Two clear indicators are that symptoms migrate around and come and go. Symptoms that are present all the time are most often not Lyme disease.

Also, if you take antibiotics and don't have a herxheimer reaction, or worsening of symptoms, its very likely not Lyme disease.

But, the specific bands on your test results could give you further information as certain bands such as 23, 31, 39, are highly specific to Lyme disease.

You doctor is a good one, I would trust her.
 

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Posted by thatjames1130 (Member # 46830) on :
 
I think Advanced Labs is the name of the lab that it said on top of the test results, but I'm not completely sure, I'll try to get my results back today.
 

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Posted by thatjames1130 (Member # 46830) on :
 
Thanks unsure445!

I've had to taken antibiotics several times in my life, and I don't ever remember anything getting worse because of them, except some diarreah (sorry, lol).

Depression is always there and the knee pain comes and goes but it's never in any other joint.

I haven't experienced the tingling sensation since my panic episodes in July/August.
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by MichaelTampa:
please edit out doctor's name

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quote:

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Originally posted by TF:

So, I would advise you to not give your test results to anyone again. Let doctors make copies but you ALWAYS keep your test results. These are very important documents.

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quote:

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Originally posted by Lymetoo:

quote:

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Originally posted by MichaelTampa:
please edit out doctor's name

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-
Where? All I see is a Dr's initial, which is allowed.

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quote:

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Anybody know how I can post a picture for when I get my results?

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You can type it all in by hand , or you can take a pic, upload it to an online picture sharing site (such as tinypic.com, photobucket.com, etc., because Lymenet is not able to upload a pic directly), and then get the link for sharing on forums and post that here.

Note: If you upload to a site such as tinypic, choose the correct format ("message board") BEFORE uploading it. It should then be the correct size for sharing on here.

Make sure you cover personal identifiers such as name, birth date, requisition #, etc. That is very important, since the WHOLE WORLD will be able to see your results. But you have nothing to worry about if you cover the personal info.

We can then give you commentary based on your "anonymous" test results.
 

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Posted by TF (Member # 14183) on :
 
If your doc used Advanced Labs, then you did NOT get a Western Blot. Advanced Labs only does a blood culture test for lyme, so that would be what you got.
 

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Posted by thatjames1130 (Member # 46830) on :
 

quote:

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Originally posted by TF:
If your doc used Advanced Labs, then you did NOT get a Western Blot. Advanced Labs only does a blood culture test for lyme, so that would be what you got.

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quote:

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Originally posted by thatjames1130:
So, there's really no way at all to "rule out" Lyme?

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Yes. Based on YOUR SYMPTOMS AND YOUR TESTS.

(Even if all your infection test results are all negative), you have every reason to consider and suspect Lyme Disease (and coinfections) until your symptoms are those of a healthy person again.

Don't be offended or take this next statement wrong (because I'm trying to put a different slant on this), but,

If you consider the symptoms you are now experiencing to be that of a healthy person, then, maybe it's time to just live with them.

If not, then realize that

Sometimes the body speaks through the heart.

Your body knows when it is sick, and if you are questioning it, that's a pretty strong signal that all is not well.

But, if you do all the things we have suggested and it all turns up a negative (for Lyme and tick-borne diseases), and you feel in your heart what you are experiencing is normal, then I would say it's time to stop searching and be at rest about what you are experiencing.

Until then, please let us help you through the complexities of these diseases and their testing.
 

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Posted by TNT (Member # 42349) on :
 
I thoroughly support what TF has just posted!
 

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Posted by MannaMe (Member # 33330) on :
 
About the depression - our health care professional told us that 85% of depression is caused by a lack of omega 3 fatty acids.

So he recommends omega 3 fish oil. Nordic Naturals is a good brand. You want one that is free of mercury.
 

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Posted by Carol in PA (Member # 5338) on :
 
"Anxiety, depression, muscle twitches, heart palpitations, obsessive compulsive..."

These are symptoms of low magnesium.
You need to eat foods high in magnesium and take supplements.

The Lyme bacteria live in our muscle and nerve cells and use up the magnesium for themselves.
This causes numerous problems, as all of our enzyme processes need magnesium.


Foods to eat:
Almonds, almond butter
Cashews
Pumpkin seeds
Dark chocolate
Beans, kidney beans, baked beans, rice and beans, bean soup, bean burritoes


As for supplements, magnesium oxide is more difficult to absorb.
But it's cheap, so most stores stock it.
Look for magnesium taurinate or mag glycinate, forms with "-ate" rather than "-ide."


Source Naturals Ultra-Mag, with
magnesium citrate, taurinate, malate, glycinate and succinate.
http://www.iherb.com/Source-Naturals-Ultra-Mag-120-Tablets/1415

Natural Vitality, Natural Calm, with
ionic magnesium citrate (from magnesium carbonate).
http://www.iherb.com/search?kw=Natural+Vitality%2C+Natural+Calm&sug=natural+vitality+natural#p=1


There are other ones too, that people here recommend.


Also, as MannaMe says, fish oil can help depression and anxiety.
Google for anxiety depression fish oil, and read articles.
Search for fish oil at iHerb.com or at Amazon.com and read reviews.
I like the Minami Nutrition brand.


The Importance of Magnesium to Human Nutrition
http://www.mbschachter.com/importance_of_magnesium_to_human.htm
 

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Posted by thatjames1130 (Member # 46830) on :
 

quote:

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Originally posted by TNT:

quote:

---

Originally posted by thatjames1130:
So, there's really no way at all to "rule out" Lyme?

---

Yes. Based on YOUR SYMPTOMS AND YOUR TESTS.

(Even if all your infection test results are all negative), you have every reason to consider and suspect Lyme Disease (and coinfections) until your symptoms are those of a healthy person again.

Don't be offended or take this next statement wrong (because I'm trying to put a different slant on this), but,

If you consider the symptoms you are now experiencing to be that of a healthy person, then, maybe it's time to just live with them.

If not, then realize that

Sometimes the body speaks through the heart.

Your body knows when it is sick, and if you are questioning it, that's a pretty strong signal that all is not well.

But, if you do all the things we have suggested and it all turns up a negative (for Lyme and tick-borne diseases), and you feel in your heart what you are experiencing is normal, then I would say it's time to stop searching and be at rest about what you are experiencing.

Until then, please let us help you through the complexities of these diseases and their testing.

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quote:

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Originally posted by TF:
Your test results may have some positives, so let's wait until tomorrow to see them.

You are really getting ahead of yourself. We have answers to these questions, but your test results may tell the tale. Does your doctor have ALL of your Western Blots, etc.? ALL of your lyme-related tests?

Did you ever show your lyme test results to your dad? Did he say anything about them--like that you had some positives, etc? I would think he would be somewhat knowledgeable about how to read a lyme and coinfection test since he has lyme and is being treated for lyme.

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quote:

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Originally posted by thatjames1130:
I feel like I can deal with my current symptoms (except for depression) but my main concern is things getting worse. Does Lyme related depression always need to be treated with medicine?

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quote:

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Originally posted by TF:
I don't have the same opinion your father has about Dr. G based on patient reports I have received on her. I have been told by people that she will only treat a person for lyme disease if they have a positive test.

Then, if they have a positive test, she will treat them "until the cows come home."

So, obviously, she is not willing to follow the Burrascano approach to diagnosing lyme disease. That is safer for her, but leaves many folks with lyme disease out in the cold.

---

This is a concern!

Diagnosis for Borrelia and coinfections is based on more than just tests! It is based on tests AND clinical presentation (symptoms), clinical history (symptoms and exposure), along with a differential diagnosis (ruling out other possibilities).

And yes, sometimes a trial of meds (& herbs) is necessary to gauge the response if there still is uncertainty.

It sounds like Dr. G is not diagnosing and treating true to ILADS standards.

You may need a 2nd opinion with an ILADS doc and TF has some very good suggestions if it looks like that is what you need.
 

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Posted by thatjames1130 (Member # 46830) on :
 
I can't express how thankful I am to all of you who have been so helpful. I think the reason I worry so much is because idk how I'd be able to afford treatment if I do have Lyme, and if it's even possible for me to get better

That's just the way my mind works I guess, I always expect the worst. Has anyone here gotten completely better through treatment? And how do you live knowing you could get it again?

I feel like even if I was cured, every little symptom afterwards I would think to myself "oh no, it's back".
 

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Posted by Keebler (Member # 12673) on :
 
-
See if you can turn worry into action. Worry does us no good, action can. Become as educated as you can on the key details.

Reject some of your old patterns when you catch yourself in a "worry" by just moving along or side-stepping to "okay, well, then what can do about that, then?"

Even if you can't afford treatment, don't jump on the worry train for that reason, either. Treatment can vary. One step at a time and take care of yourself as best you can along the way.

Connect with your local LYME SUPPORT GROUP, be sure they are ILADS "minded" though.
-
 

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Posted by thatjames1130 (Member # 46830) on :
 

quote:

---

Originally posted by TNT:

quote:

---

Originally posted by TF:
I don't have the same opinion your father has about Dr. G based on patient reports I have received on her. I have been told by people that she will only treat a person for lyme disease if they have a positive test.

Then, if they have a positive test, she will treat them "until the cows come home."

So, obviously, she is not willing to follow the Burrascano approach to diagnosing lyme disease. That is safer for her, but leaves many folks with lyme disease out in the cold.

---

This is a concern!

Diagnosis for Borrelia and coinfections is based on more than just tests! It is based on tests AND clinical presentation (symptoms), clinical history (symptoms and exposure), along with a differential diagnosis (ruling out other possibilities).

And yes, sometimes a trial of meds (& herbs) is necessary to gauge the response if there still is uncertainty.

It sounds like Dr. G is not diagnosing and treating true to ILADS standards.

You may need a 2nd opinion with an ILADS doc and TF has some very good suggestions if it looks like that is what you need.

---

quote:

---

Originally posted by Keebler:
-
A couple of things to avoid if you might have lyme / infection: steroids; aerobic exercise (other exercise is important, just aerobic.-

---

This is is interesting. Is aerobic exercise exercise to get your heart rate up and huffing and puffing, like jogging? Because Dr G actually told me she recommends this type of exercise because oxygen helps to "kill the bacteria".

I also exercise regularly 5x per week, aerobic (running) and anaerobic (weights) and haven't ever noticed adverse effects. In fact, I usually feel better after. Could this signify something?

I have also gotten numerous vaccines throughout my life without any side effects that I remember.
 

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Posted by thatjames1130 (Member # 46830) on :
 
By "better" I mean a slight mood lift. Nothing substantial, but no adverse effects.
 

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Posted by Lymetoo (Member # 743) on :
 
If you feel better, then do it.
 

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Posted by thatjames1130 (Member # 46830) on :
 
Do people with Lyme typically react negatively to aerobic exercise?
 

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Posted by Keebler (Member # 12673) on :
 
-
Your experience with exercise is NOT typical for those who have lyme. Most would have extreme and dangerous exhaustion from what you do.

I can't say that you do or do not have lyme. There are other things, of course, to consider.

And, once in while, someone with lyme does better with hard exercise or with heat -- but that may last or not. It's just not typical so just be mindful in case that changes.

Also, explore other things that could be at the root of your symptoms.

Do keep in mind, though, that

Aerobic exercise in someone with an infection can damage the heart, the liver and have other harmful effects on adrenal & immune function, etc.

In the bit you copied and put in bold, that last part should have had a "not" in it. Other kinds of exercise are important, just NOT aerobic if an infection is on board.

If you feel better after whatever you do, and you don't have "payback" later that day or the next day, that's good. Keep it to where you don't have to suffer exhaustion afterward as is something that many with lyme have experienced before they found the right kind for them - at the various stages.

Don't underestimate how good a walk can be. If you can do a walk several times a day for a few minutes, that could be more uplifting than a long walk less frequently.

Walk in NATURE or move in nature as much as you can. Just stay clear of brushing upon or being under leaves. Get away from traffic and busyness as much as you can as that really helps moving the body also help heal the brain and spirit.

[ 10-15-2015, 05:33 PM: Message edited by: Keebler ]
 

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Posted by hopingandpraying (Member # 9256) on :
 
Dr. H in NY is the top LLMD, but I don't think he is taking new patients. Last I heard was he had a very long waiting list (800 people, I think!) Call to find out.

If not, write a new post in "Seeking a Doctor" and write in the state specifically where you are looking for in the title, i.e. "Need LLMD in PA".
 

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Posted by TF (Member # 14183) on :
 
I got completely better by going to a lyme specialist that followed the Burrascano protocol.

I had lyme, babesiosis and bartonella undiagnosed for at least 10 years before a smart doctor tested me for lyme. Still, with good treatment, I got rid of these diseases.

It is now 10 1/2 years since I completed my treatment and I am still symptom free, enjoying my life.

At first, I was worried about getting lyme back all the time. I found an attached tick 2 weeks after completing my treatment! But, it didn't make me sick.

I went back to my lyme doctor 9 months later thinking I had lyme back, or else it was menopause. It turned out to be menopause.

I have changed my lifestyle to avoid ticks. Even so, I have found a few on me in 10 1/2 years. Still, I have not gotten lyme back. BUT, I still test positive on a Quest Western Blot!! Ha ha. I am still making antibodies to lyme disease.

So, if you have lyme and get a good doctor, you can get well. It took me 13 months with a good Burrascano type doctor.

You will naturally worry about getting it back, but worry doesn't cause it to come back. So, eventually, you calm down.

But, I never go into woods, walk in tall grass along the road, lean against trees, sit on tree stumps, and I avoid gardening and pulling weeds and stepping in flower beds and try not to walk on grass much at all. (Our property backs to a woods.) I check myself for ticks any time I have been outside.

We treat our yard with tick killer at least 3 times in a year.

This is life after lyme. It is a good life!

So, don't fear finding out the truth. I can send you to a good doctor who will help you. (You can't get in with Dr. H.)

How long has your dad been treating with Dr. G?
 

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Posted by TF (Member # 14183) on :
 
Why was Dr. G. telling you ways to "kill the bacteria" if she said you don't have lyme disease?

Was she talking about other bacteria?

Normally, a lyme patient has terrible fatigue. Fatigue is not a good enough word for it. Normally, a lyme patient would not be exercising 5 times per week. They just wouldn't be able to do it physically.

How long is a typical exercise period for you?
 

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Posted by thatjames1130 (Member # 46830) on :
 
TF,

First of all, thank you for sharing your encouraging story, it gave me hope.

My dad is no longer seeing Dr G due to costs. He's been on antibiotics for a while but actually only seemed to get worse since his diagnosis I really do feel awful for him. He's now bouncing back and forth between "pain management specialists"

Typical exercise for me is about 45-60 minutes of weights, sometimes followed by a mile or two of cardio.

Dr G told me about the bacteria cuz I was asking a lot of questions. I liked her in this regard, because she had no problem with being a teacher and answering all my questions.

I feel that my depression symptoms have gotten somewhat better after taking St John's Wort, but I still can't help but to obsessively worry.

When Lyme wasn't on my mind, I was constantly worrying why I didn't enjoy anything like I used to (a classic symptom of depression, I've heard).
 

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Posted by Keebler (Member # 12673) on :
 
-
Sixteen points to consider, please share with your father as well.

Even if you might not have lyme, you may find some answers here:

www.amazon.com/s/ref=nb_sb_noss_2/184-1715542-5541137?url=search-alias%3Daps&field-keywords=lyme%2C%20Horowitz

Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease

- by a leading ILADS LLMD - November 2013
-
 

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Posted by thatjames1130 (Member # 46830) on :
 
I would totally buy that book if I had the money. If not for me, then for my dad at least.

Little off topic, but I'm a college student still waiting on PA to pass their state budget so I can get the $1900 refund they promised me -_-
 

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Posted by TF (Member # 14183) on :
 
Yes, Dr. G is very expensive. There are better, less expensive doctors.

I don't think many people with lyme could do all of the exercise you are doing. Not many at all. That is because the #1 lyme symptom (and babesiosis symptom) is this horrendous fatigue.

Generally, a lyme patient's endurance and energy is extremely limited. So, perhaps you just have depression.

If you take a good antidepressant (like Zoloft) and all of your symptoms go away, then you have diagnosed yourself.

And, you can stop the Zoloft any time you want to. You slowly taper down your dose and, if your symptoms don't come back, then you no longer need it.

But, if your symptoms start coming back as you taper down, then you stay on the Zoloft for a few more months and then try again.

If you are under a lot of stress, you may need the Zoloft for about 9 months. It helps restore the brain chemicals that can get too low when we are stressed for a long period.

Your primary doctor can prescribe it for you. It made me feel like my normal self! I loved it! And, I only needed it for 9 months.

I hope you can try this and all of your symptoms just disappear!!!
 

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Posted by thatjames1130 (Member # 46830) on :
 
I've also posted a question about where to get Lyme doctors, if anyone here is interested in helping.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=026315;p=0#000000
 

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Posted by Keebler (Member # 12673) on :
 
-
I agree with TF about how your exercise pattern and tolerance is not typical for lyme.

I'd stop gluten before trying any Rx anti-depressant. Just going off gluten lifted years-long depression in my case.

I had many terrible experiences with side-effects from many different anti-depressant trials, even at low dose. Please first try a gluten-free diet.

Be sure you have enough protein and complex carbohydrates and good fat in your diet, too, and that you eat often enough.

You might connect with your local CELIAC support group for more detail on that.

As for that book, perhaps if you connect with your school library, they could get it for you to borrow.

or connect with your local lyme support group (even if you may not have lyme, it's a good book and will also help you better help your Dad).
-
 

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Posted by thatjames1130 (Member # 46830) on :
 
Thank you TF!

Could depression cause the twitching as well? I know anxiety could but I seem to have twitching all day long, not triggered by any thoughts or anxious feelings that I'm aware of.

I'm sort of afraid of anti-depressants for their side effects. How was your experience with Zoloft as far as side effects go?

I've been on St. Johns Wort for a couple of months now and I think it is helping, more than any other supplement I've tried, but I'm still not 100%. (Maybe like 70% better as far as my mental state goes).

My pdoc actually prescribed Paxil, but I didn't want to take it, just because I felt like she rushed into it too quickly.
 

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Posted by thatjames1130 (Member # 46830) on :
 

quote:

---

Originally posted by Keebler:
-
I agree with TF about how your exercise pattern and tolerance is not typical for lyme.

I'd stop gluten before trying any Rx anti-depressant. Just going off gluten lifted years-long depression in my case.
-

---

Yes, actually I tried a partial "eliminate diet". Three weeks ago, I cut out wheat/gluten, eggs, soy, and dairy. I already know I'm lactose intolerant so the dairy was an obvious one.

During the three weeks, I haven't really noticed an improvement in my mood. I felt a little slimmer with my stomach, but thats about it.

I slowly reintroduced gluten a week ago and havent noticed any psychological adverse effect. However, by the end of the week, after reintroducing everything, I have noticed a little bit of bloating going on, but still no other physical/psychological changes.

Twitching and my mild-moderate depression persisted unfortunately.
 

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Posted by TF (Member # 14183) on :
 
Muscle twitching could be from low magnesium. The easy way to test this out is to buy some Mag-Tab SR by Niche on line and take one in a.m. and one in p.m.

You will notice a difference in about a week if the twitching is from low mag. Typical mag blood test will not show low mag. So, instead of asking for the $300 good magnesium test, order a bottle of Mag-Tab and test it out yourself.

This is the magnesium Burrascano recommends. It has helped many people that I know. Some had lyme and some didn't.

The Zoloft caused headache for me in the beginning. No other side effects. So, I started out slow with it. I took maybe 1/4 of a pill per day at first. This is a ridiculously small amount, but I have to do that due to the headaches.

People think they will not be their normal selves on antidepressants. Zoloft returned me to my normal self.

I understand being turned off by a doc quickly offering an antidepressant. I was offered them for 10 LONG years when my real problem was lyme disease!!!

St. John's wort is good for very mild irritability. It is not strong enough to take care of a depression. A depression is a lack of chemicals in the brain. Restore what the brain lacks and it will go back to normal.

So, if wort helps you, that is a sign that a good antidepressant will likely restore you to normal.

And, you don't become dependent on antidepressants. Zoloft does not cause weight gain or any other side effects. At least, it didn't for me and I had to take it 2 different times in my life. It was great both times!
 

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Posted by TF (Member # 14183) on :
 
I took the Zoloft for anxiety once and for anxiety/depression once.
 

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Posted by Lymetoo (Member # 743) on :
 
Nearly everyone is low in magnesium.
 

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Posted by thatjames1130 (Member # 46830) on :
 
Thanks again TF,

The only thing is that there have actually been studies comparing St John's Wort to leading SSRI drugs (Paxil, Zoloff, etc) and St John's Wort actually outperformed them in clinical trials.

Idk what that means, I guess it means that in my mind, if wort doesn't do the trick 100%, I feel that no SSRI would.

I could be wrong though, as everybody is different. I might have to go down that road eventually and it's at least good to know that they're an option.
 

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Posted by thatjames1130 (Member # 46830) on :
 
Would this be a good supplement? It's a little more in my price range

http://www.amazon.com/MAGNESIUM-CHLORIDE-Delayed-Release-Magnesium-Supplement/dp/B00080CKBO
 

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Posted by TF (Member # 14183) on :
 
St. John's wort didn't help me but Zoloft did.

Wort only helped me with very mild mood problems. But, it worked great for that. I loved it for that.

I can't believe wort outperformed Zoloft (because of the chemical problem in the brain when you are in a clinical depression. Wort can't address that physical need). I would like to see that study to figure out the flaw. Do you have the link?

I don't know anything about the magnesium you are asking about. Burrascano recommends Mag Tab SR and I know it works.

A 60 count bottle is $15.25. Enough for a 1 month trial. That is plenty to see if low mag is the cause of your twitching.

http://magtabsr.com/shop/

Or, don't bother trying to fix the twitching if you can't afford the good mag. Just get to your doctor and ask for a trial of Zoloft. That is an awful lot cheaper than going to a second lyme doctor. Try the cheap things first to see if they work.

You will spend big bucks going to another lyme doctor.

Here is Burrascano on mag:

"Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help in energy level and cognition. The best source is magnesium L-lactate dehydrate ("Mag-tab SR", sold by Niche Pharmaceuticals: 1-800-677-0355, and available at Wal-Mart). DO NOT rely on "cal-mag", calcium plus magnesium combination tablets, as they are not well absorbed. Take at least one tablet twice daily. Higher doses increase the benefit and should be tried, but may cause diarrhea. In some cases, intramuscular or intravenous doses may be necessary." (page 28)
 

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Posted by MannaMe (Member # 33330) on :
 
I would try omega 3 fish oil before an antidepressant!! If you aren't eating fish, or grassfed beef & chicken or milk & eggs from grassfed cows & chickens, you aren't getting enough omega 3's in your diet.

Our brains need good fats - we need to eat omaga 3's because our bodies can't make them.

Fish oil won't cause all the side effects that antidepressants can.
 

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Posted by thatjames1130 (Member # 46830) on :
 
http://www.chiro.org/nutrition/FULL/St_John's_Wort_Vs_Drugs.shtml

There's a link to a summary of the study's comparing wort to SSRIs

And yeah, I take fish oil 2x per day as well as eat vegititsrian fed eggs and fish like salmon 2x per week.
 

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Posted by thatjames1130 (Member # 46830) on :
 
So, if I start taking antidepressants and they help, my depression isn't caused by Lyme?
 

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Posted by TF (Member # 14183) on :
 
We have to see your test results to try to help you answer these questions.

The tests will give us a better idea of whether or not this could be lyme.

Have you studied the symptom list in the Burrascano Guidelines?

http://www.lymenet.org/BurrGuide200810.pdf

See pages 9-11 and 26-27

Tell us all the symptoms you have from that list.

We know you don't have the characteristic severe lyme fatigue.

What has your psychologist/psychiatrist diagnosed you with?
 

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Posted by thatjames1130 (Member # 46830) on :
 
My symptoms from that list are as follows:

-Mild knee pain that comes and goes

-Twitching Moderate

-Mild Depression/Anxiety

- Mild Tingling (hasn't happened since July)

- Mild ringing in war (very rare)

My psychologist is still in the process of diagnosing me

Pain is never anywhere other than my knee. Sometimes my lower back hurts from sitting over a long period of time, but I attribute this to a small injury I sustained while doing deadlifts.
 

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Posted by Brussels (Member # 13480) on :
 
When I was sick with lyme, I took pure powder Cats claw for about 2 whole years. Buhner's book was just released, and some of us here started taking his suggested herbs from Healing Lyme.

What I concluded was that ALMOST everyone with active Borrelia reacted in a way or another to cats claw.

it is cheap if you buy it bulk,a nd you just have to mix it to water and drink. Start slow.

If you see no herxes, no improvement, nothing, I think you may not have active Borrelia. It doesn't mean you do not have lyme, because with lyme disease, the pathogens take turns, sometimes you got more bart, others candida, other times it's some virus...

then you can have again Borrelia, activated, sometime later.

But I find the cats claw test inexpensive and without real side effects, if you can tolerate the herbs. It's just an idea, but that is what convinced some people I knew, that had lyme but were not sure about it.
 

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Posted by TF (Member # 14183) on :
 
All we need from your primary is a copy of the Western Blot tests that he did--the actual test results that he received.

Notice that the above test results summarize your Western Blot by MDL. The summary says: You had no positive bands on the IgM and only band 41 positive on the IgG.

Then, it says "see attached report." You may have never gotten that report, but I would contact the lyme doctor's office and ask for it. It should be exactly what they have summarized, but the point is that you want your ACTUAL Western Blot test results, not a summary. You want to see the result for each band that was tested.

You don't know which bands they tested you for until you get the actual test results. We want to be sure that they tested for the important bands. Not all labs do.

So, your Western Blot through MDL looks just like my husband's and he does not have lyme, even though he had sex with me for the 10 years that I was sick with lyme but didn't yet have a diagnosis. That is a lot of sex.

That is why I had him tested. He only had a positive on band 41. That positive can be attributed to gum disease which he had in the past. So, your WB looks like a person's who does not have lyme.

Still, I would want my actual test results which they evidently sent to the lyme doctor.

You are also negative for all the coinfections that she tested you for. She ordered a number of tests for these, which is good. But, as we have said, you can't count on these being accurate, especially a PCR or ELISA.

It is EXTREMELY difficult to read these test results because the print is so small and not clear at all. I made an effort to do this, just to help you to understand your results.

If you want to retype exactly what you see, perhaps more people would be willing to chime in. This is really tough to read, even enlarging the print on my screen.

Regarding your list of symptoms, you are not naming the classic lyme symptoms. For example, from p. 26 of Burrascano:

"Migratory- first a knee will hurt, then over time this may lessen and the elbow or shoulder acts up, and later the joints calm down but headaches worsen."

"Tiredness and limited stamina- often is a strong need to rest or even nap in the afternoon, especially when the flushed face and elevated temperature appears."

"4-week cycles- Bb activity, and thus symptoms, wax and wane in a cycle that repeats roughly every four weeks. This cycle, if clear, can guide your treatments"

Does your knee pain occur in 4 week cycles? If not, have you had a doctor examine your knee? Perhaps a knee doctor can tell you why you sometimes get mild pain there.

I will wait to see the other Western Blot test results, but your very few mild symptoms and the fact that you exercise about 1 hour or more 5 days per week including running and weightlifting just does not sound like a typical lyme patient at all.

You may just have a mild knee problem and have depression/anxiety from stress.

You really should get the magnesium Burrascano suggests and see if the twitches go away using it for a few weeks.
 

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Posted by thatjames1130 (Member # 46830) on :
 
Thanks TF,

I didn't even notice band 41 being positive before, now I'm a bit concerned. Dr. G is closed till Monday so I'll have to call then.

Anyway, here are my hand-typed results:

BABESIA MICROTI BY REAL-TIME PCR- Negative

EHRILICHIA CHAFFESSENSIS (HME) & ANAPLASMA PHAGOCYTOPHILIA (HGE) BY REAL-TIME PCR- Both Negative

RICKETTSIA RICKETTSII BY REAL-TIME PCR- Negative

BABESIA WA1 BY REAL-TIME PCR- Negative

LYME DISEASE WESTERN BLOT (IGM/IGG)- IgM: No bands present. IgG: band 41 present (see attached report) IgMCDC- Negative IgMaIt- Negative IgGAIt- Negative

BARTONELLA HENSELAE IGG/IGM by ELISA- IgM Negative (Index=0.17/0.89) IgG Negative (Index=0.31/0.89)

LYME DISEASE C6 PEPTIDE BY ELISA- Negative (Index=0.13/0.90)

ANAPLASMA PHAGOCYTOPHILUM IGG/IGM BY IFA- Negative
 

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Posted by TF (Member # 14183) on :
 
It would be good if you would put the picture of the test results back up because you have not retyped all of the relevant information in your post above.

For example, you don't give the name of the lab doing the test. To a lyme patient, that is very important.

I know I saw other things that were important also, so I hope you can repost the photo of the test results.
 

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Posted by thatjames1130 (Member # 46830) on :
 
Will do, just have to edit out Dr G's info
 

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Posted by thatjames1130 (Member # 46830) on :
 





 

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Posted by thatjames1130 (Member # 46830) on :
 
The more I research, the more I become concerned with band 41. Some say it's non specific to Lyme, some say it's highly specific to Lyme, and some say it's between Lyme and some diseases that are easy to rule out, like syphilis.

What do you guys think?
 

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Posted by TF (Member # 14183) on :
 
You need to add the "Reference Units/Comments" section to your post above where you give us your MDL test results.

This is very important information. I can't make it out entirely.

And, you have to label that information with the proper heading. In other words, you have to replicate the format of the test results so that it makes sense to the reader.

You can't just put it all together. It makes no sense unless it is in the proper columns with headings.

You put the info in "Reference Units/Comments" first when giving us your Western Blot results. Then, you went back to the middle column and wrote that information. You can't do that.

For the other tests, you didn't give us the info in the third column at all.

So, what you did isn't good enough if we are to try to help you figure out your chances of having lyme.

Otherwise, give us a much better picture of the document. One that is totally readable. Only the MDL.
 

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Posted by Lymetoo (Member # 743) on :
 
james... I would not personally buy the mag product you posted. It contains calcium and calcium will deplete magnesium. Find one that is mag only.

As for your labs, Quest is useless unless it shows positive .. can't trust a negative.

MDL does not check for all possible bands as far as I remember. It's better than Quest though.

I can't read any of those. So is band 41 the only band that showed up?

regarding depression .. SAM-E and 5htp are two other OTC possibilities.
 

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Posted by thatjames1130 (Member # 46830) on :
 
Test
Babesia microti by Real-Time PCR
Results
Negative
Reference/Units/Comments
None


Test
Ehrlichia chaffeenis (HME) & Anaplasma phagocytophila (HGE) by Real-Time PCR
Results
Negative (HGE,HME)
Reference/Units/Comments
HGE:Negative
HME:Negative


Test
Rickettsia rickettsii (RMSF) by Real-Time PCR
Results
Negative
Reference/Units/Comments
None


Test
Babesia WA1 by Real-Time PCR
Results
Negative
Reference/Units/Comments
None


Test
Lyme disease Western blot (IgM/IgG)
Results
IgMCDC Neg
IgMAlt Neg
IgGCDC Neg
IgGalt Neg
Reference/Units/Comments
IgM: No bands present. IgG: 41. See attached report.


Test
Bartonella henselae IgG/IgM by ELISA
Results
IgM Neg (Index=0.17)
IgG Neg (Index=0.31)
Reference/Units/Comments
*IgM Index range: Neg: <=0.89, Equivocal: 0.90-1.10, Pos: >=1.11
*IgG Index range: Neg: <=0.89, Equivocal: 0.90-1.10, Pos: >=1.11


Test
Lyme disease C6 Peptide by ELISA
Results
Neg (Index=0.13)
Reference/Units/Comments
*Index range: Neg <=0.90, Equivocal: 0.91-1.09, Pos: >=1.10

Test
Anaplasma phagocytophilum IgG/IgM by IFA
Results
Negative
Reference/Units/Comments
None

I should add that this test was done at "Medical Diagnostic Laboratories L.L.C."

[ 10-16-2015, 12:42 AM: Message edited by: thatjames1130 ]
 

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Posted by TF (Member # 14183) on :
 
You didn't include all your bartonella results. You have both an IgM and an IgG. List both.
 

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Posted by thatjames1130 (Member # 46830) on :
 
Just did. Sorry, that whole thing was quite tedious.
 

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Posted by TF (Member # 14183) on :
 
In a post you made on Oct 15, you said: "The only thing is that there have actually been studies comparing St John's Wort to leading SSRI drugs (Paxil, Zoloff, etc) and St John's Wort actually outperformed them in clinical trials."

You then gave the following link when I asked to see the studies:

http://www.chiro.org/nutrition/FULL/St_John's_Wort_Vs_Drugs.shtml

Here is a quote from that link:

"Yet recent clinical trials have shown that St. John's wort works as well as Prozac, Zoloft and other leading antidepressant drugs for treating mild to moderate depression.

A study recently published in the April 18, 2001, Journal of the American Medical Association found the herb ineffective in treating severe depression. [1] It's important to note that St. John's wort has been indicated in the treatment of only mild to moderate depression--not severe depression--for which its efficacy has been well-demonstrated.

Pharmaceutical antidepressants are still the treatment of choice for severe depression."

Here is the official abstract of that study:

http://www.ncbi.nlm.nih.gov/pubmed/10823363

Notice the title: Comparison of an extract of hypericum (LI 160) and sertraline in the treatment of depression: a double-blind, randomized pilot study.

Here is a definition for you:

Pilot study--a small-scale experiment or set of observations undertaken to decide how and whether to launch a full-scale project

So, if it has been proven that St. John's Wort equals Zoloft for mild to moderate depression, why is your website referencing just this pilot study--a very small study done 15 years ago.

I suggest you search the medical literature to see for yourself what it says about how useful Wort is in successfully treating this condition.

What has the last 15 years shown? Are there major studies that back up this pilot--studies using hundreds and hundreds of patients to test out this hypothesis?


Regarding your test results, I hope that you now are paying attention to the details of your MDL test. For example, do you see that you got 2 tests for bartonella--IgG and IgM.

Do you see that a score up to .99 is considered negative? Then, a range considered equivocal, and then a positive range.

Your two scores on these tests were .17 and .31

These are extremely low scores.

So, study your test results carefully and if you have questions about them, ask us here.

Read the website of MDL--the lab your lyme doctor used to test you. Read about the reputation of MDL as well.

Read about PCR testing. Read about the C6 Peptide test. Read about the coinfections babesiosis and bartonella focusing on the symptoms of these diseases. Lyme doctors call them "the big 3" because they are the 3 diseases that nearly every lyme patient has if they have been sick with lyme for at least a year.

Put all of the evidence together. Do not allow your mind to focus on one thing (like the positive band 41. Remember, my husband had that. It is 11 1/2 years since he got that result from Igenex--the best tick-borne disease lab in the nation. Still, he has never developed lyme disease. Gum disease can cause a positive on band 41.)

See what famous lyme doctors like Burrascano say is required to indicate a diagnosis of lyme disease--the symptoms, the medical history, results of the physical exam, and results of tests.

Here is Burrascano regarding the Western Blot lyme test:

"Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands. 55KD, 60KD, 66KD, and 73KD are nonspecific and nondiagnostic." (page 7)

Below this, he discusses PCR.

Hopefully, once you educate yourself, you can come to your own conclusion about the possibility that you have lyme disease. You may have to be treated for your anxiety/depression before you can do this analysis. I don't know. Can you be objective in your current state of mind? That means, treating ALL of the evidence equally, and not obsessing on one fact over the other 99 facts.
 

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Posted by thatjames1130 (Member # 46830) on :
 
Thanks TF,

The reason I'm worried is mainly because I'm concerned with Lyme being the cause of my anxiety/depression. If this is so, then wouldn't I have to cure the Lyme before I cure my anxiety/depression? Or would conventional means of treating depression be just as effective?

Also, the more I research band 41, the more I wonder. I haven't ever had a gum disease that I'm aware of, so I just don't know what else would cause that band to show up.

I'm not sure what other spirochetes I could have been exposed to, unless some of them come from common bacterial infections. This is why this worries me (coupled with my anxiety already).

I will certainly start researching more into these labs

[ 10-16-2015, 12:57 PM: Message edited by: thatjames1130 ]
 

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Posted by TF (Member # 14183) on :
 
Lyme doctors give patients Zoloft which is great for anxiety. In other words, they try to alleviate the patient's symptoms while they work on the cause. Regarding how well these meds work if the cause of the problem is lyme, all I can do is quote from a book "The Lyme Disease Solution" which is written by the lyme doctor who cured me.

This is what he says:

"If needed there are conventional medical approaches to depression that realy do work. I strongly recommend that you consider them as temporary ways to deal with the biochemical imbalances in your brain that can be caused by lyme and the TBDs. The following prescription medications, taken as directed under your doctor's supervision, can also be helpful in relieving depression:

Amitriptyline
Cymbalta
Lexapro (10-20 mg once per day). Lexapro is especially useful when chronic anxiety is also present.
Paxil
Wellbutrin
Zoloft (25-100 mg once per day). This is the overall best-tolerated antidepressant drug in my practice and is the one that I most commonly prescribe. Most people prefer taking this medication at night." (pages 370-371, Chapter 8)

I have not included all that he says about the other meds. You can likely get the book from the library and a lot of it is also available on the Internet at:

http://www.lymebook.com/antibiotic-treatment-for-babesia-bartonella-ehrlichia-co-infections

Regarding band 41, the research may not be at a point where your question can be answered. Band 41 reacts to the flagella or "tail" of the organism. Many organisms have tails, evidently, which are used to propel the bacteria along and through blood, tissue, etc.

So, perhaps that question will have to be held in suspense. Suspend it up there with my husband's case. Maybe in 5 or 10 years, or 30 years, we will know more. Right now, there isn't much research into lyme testing going on. So, it could well be a long time before there is a definitive answer to your question about band 41.
 

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Posted by thatjames1130 (Member # 46830) on :
 
TF, you and all of you others have been EXTREMELY thorough and helpful. More than I could have ever expected when I posted on an online forum, so I thank you all for that.

Now it's my turn. I'll do some extensive researching and will call Dr. G on Monday to get the detailed report sent to me, as well as ask her a couple of other questions.

I will post further questions here on this thread. I think at this point I will try to keep Lyme only in the back of my mind until I work further with my psychologist to see if there really is just a psychological cause for all my symptoms.

I will also "shop" for LLMDs. The most flexible one I found is about $500 for the visit and maybe even more for labs, which stinks but we'll see. I think I'd feel more comfortable after my second opinion and if I can get tested through IGENEX
 

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Posted by thatjames1130 (Member # 46830) on :
 
From my short amount of researching, I've seen that many of my tests aren't the most reliable, especially PCR and ELISA.

However, apparently the MDL lab is pretty good, but they use these faulty techniques. This confuses me
 

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Posted by sparkle7 (Member # 10397) on :
 
I don't have time to read through everything here. I did read your initial querry, though.

Everything you say is valid. I have been going through this obscenity called "Lyme" for over 18 years or more. I understand what you are dealing with.

My tests were borderline. I had Lyme treatment & LLMDs, etc. None of the regular Lyme treatments helped me. I do think there are false positives and false negatives. This thing is really complicated & the doctors just don't know how to treat people. All they are doing is trying educated guesses as to what will work.

Celebrities and rich people spend thousands or millions if they can afford it & don't necessarily get well. You are not alone. Try not to obsess about it too much. There are things you can do to deal with anxiety and symptoms.

I prefer natural treatments but some people do well with drugs. Do what you can to try to get through it as best as you can.

Hopefully, you will find a cure but it's really complicated. You are not alone. Your question is valid & alot of people are dealing with this.

People on this message board are very understanding & have been through alot of "stuff". Try to keep going forward as best as you can.
 

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Posted by sparkle7 (Member # 10397) on :
 
PS - this probably is not "in you mind"... I ruled it out from the beginning when I saw a psychotherapist. Not saying what is valid for me is the same for everyone.

I do think there is something specific making people ill but the medical profession does not know exactly what it is.

Try not to stress too much. No one wants to deal with this crap but you just have to try to do the best you can with it. Look for things that help & don't get too stressed out.

I know it's beyond awful to have to deal with all this complicated "crap"... You can spend all your waking hours studying stuff & still not know what to do.

It's a personal thing. Try to find what helps you... Everyone is different.
 

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Posted by Carol in PA (Member # 5338) on :
 

quote:

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Originally posted by thatjames1130:
...until I work further with my psychologist to see if there really is just a psychological cause for all my symptoms.

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quote:

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Originally posted by Carol in PA:

James,
Muscle twitches are a symptom of low magnesium.
Magnesium and fish oil have been shown to help anxiety and depression.

Taking these supplements is something you can do yourself, as I doubt the psychologist will suggest it.

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Ditto
 

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Posted by thatjames1130 (Member # 46830) on :
 
Yeah, I was actually reading up on it and saw that most Americans are actually deficient in magnesium without knowing.

I'll look into buying some. Thanks for that info guys. Maybe that's all it is!
 

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Posted by Lymetoo (Member # 743) on :
 
Try this for info:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0
 

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Posted by thatjames1130 (Member # 46830) on :
 
Just wanted to get your guys opinions on this

So if I were to (hypothetically) take antibiotics for a month and not feel any sort of improvement or herx reactions, would it be reasonable to rule out Lyme?

Because if I know it's not Lyme, I'd like to move on and see what else could be causing all this.

I'm also gonna order some of that magnesium to see if that helps.
 

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Posted by Lymetoo (Member # 743) on :
 
You would probably feel something .. at least a herx .. though some do not herx.

It may give you peace of mind.

Be sure to order a magnesium that is easily absorbed. Oxide is not easily absorbed and neither is citrate.

Might try glycinate .. or the best in the world: ReMag.

www.rnareset.org

(not RNA drops .. ReMag)
 

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Posted by thatjames1130 (Member # 46830) on :
 
Thanks Lymetoo,

I just wish there was a way to know for sure whether I do or do not have Lyme. I'm desparetly in need of peace of mind.

I know I could have it, but i know I could also not have it. I just feel like it's a downhill battle with this always going to be in the back of my mind unless I know for sure I do or don't have it.

I'm in need of certainty, or at least as close to certain as I can get. And I think that's actually the route of my anxiety, the fact that I can't find any certainty.
 

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Posted by Lymetoo (Member # 743) on :
 
Life is never certain.
 

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Posted by thatjames1130 (Member # 46830) on :
 

quote:

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Originally posted by Lymetoo:
Life is never certain.

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quote:

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Originally posted by thatjames1130:
So, if I start taking antidepressants and they help, my depression isn't caused by Lyme?

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quote:

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Originally posted by TF:
The other test you can do is to take Mag Tab SR and Zoloft. If you get well on these, and if you stay well, you have your answer.

If you have lyme, it will continue to progress without treatment

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quote:

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Originally posted by Lymetoo:
Do you happen to have acne? Doctors will hand out doxy for acne. Just sayin'

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quote:

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Originally posted by thatjames1130:

Also, I was wondering, how does Lyme/Co infections cause muscle twitching?
Is it because it eats up magnesium, or is it because it affects the nervous system?

I say this because I started to take magnesium on Tuesday and my twitches seem to be going down.

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quote:

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Originally posted by Lymetoo:
How did you go from having 100mg capsules to 200mg capsules??

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quote:

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Originally posted by thatjames1130:


I have been taking the magnesium regularly and think I may have noticed a decrease in the frequency of muscle twitches and anxiety.

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quote:

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Originally posted by thatjames1130:


Twitching is also down even more since I've increased my magnesium

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awesome!
 

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Posted by thatjames1130 (Member # 46830) on :
 
Just wanted to pause for a moment and thank all of you for trying to help me so much.

I'm just a stranger and you've all been more than willing to put up with my obsessive nature and annoying anxiety behaviors.

Thank you all so much. Hopefully I can find peace soon, because this whole situation is just wrecking me. I know I'll get through it though.
 

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Posted by Lymetoo (Member # 743) on :
 
God bless! Hang in there!
 

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Posted by thatjames1130 (Member # 46830) on :
 
Hey guys, little update,

I'm up to 10 drops 3x per day of the Houttuynia and I haven't noticed any change good or bad.

I know I can't count on this as a "test" but I figured I'd be worth mentioning.
 

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Posted by Carol in PA (Member # 5338) on :
 
James,
It's been about two weeks since you last posted.
Have your symptoms improved or changed?

What supplements are you presently taking?
How much magnesium? Have you been able to increase it, and have you been eating foods high in mag?

Vitamin D and boron will help your body absorb and retain magnesium.
As the level of magnesium is replenished in the cells, a number of symptoms should improve, including anxiety.


My previous post to you.
 

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Posted by Neko (Member # 46592) on :
 

quote:

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Originally posted by TNT:
So, obviously, she is not willing to follow the Burrascano approach to diagnosing lyme disease. That is safer for her, but leaves many folks with lyme disease out in the cold. This is a concern!

It sounds like Dr. G is not diagnosing and treating true to ILADS standards.

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quote:

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I'm not sure what other spirochetes I could have been exposed to, unless some of them come from common bacterial infections. This is why this worries me (coupled with my anxiety already).

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