posted
Hey, so here's my story: Back in early-late June I started experiencing some slight muscle fasciculations (benign muscle twitching not intense enough to move the muscle).
To be clear, I've had these twitches for as long as I remember, but it seems like they were getting more intense.
Anyways, life went on when my father, who has Chronic Lyme Disease was complaining about how he couldn't sleep the previous night because of severe muscle twitches.
I thought to myself "hm, that's kinda a coincidence" and preceded to venture into the psychological hell known as Google. I saw how Lyme causes muscle twitches.
Then I looked at some more symptoms, and of course, the way my OCD mind works, I believed I had most of those symptoms on that list. Heart murmur history?
Yep, I was once told I have a heart murmur. Heart palpitations? Yeah, I get those sometimes. Sore knee? Sometimes! Anxiety? You betcha!
Then, I started to really worry, because of the whole political phenomenon surrounding Lyme, making it difficult to get diagnosed and treated, as well as how bad it could become if treatment didn't happen.
The more I worried, the more symptoms I started experiencing. That's when it gets confusing, you see, because at the time I was SO ANXIOUS that it's a possibility my anxiety was causing my physical symptoms.
I started experiencing more heart palpitations, more twitching, now some numbness of my feet and sometimes hands, restless right leg... the list goes on.
This anxiety (or Lyme?) led me straight into a depression where I enjoyed absolutely nothing and the only thing on my mind 24/7 was Lyme.
Well, I ended up seeing the same doctor who diagnosed my father with Lyme, Dr. G in NJ, who is a Lyme Literate Doctor specializing in rheumatology.
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.
So the results came back negative and I was finally relieved... but only for a few days. Many of my anxiety-related symptoms like heart palpitations slowed down or stopped completely. However, the depression and muscle fasciculations persisted to this day.
I find myself nearly completely unable to enjoy anything i previously enjoyed. I think the depression has maybe gotten 50% better since getting a negative test result, but that's it.
And it's not the thought of Lyme, because, until recently, I was absolutely satisfied with the test results. But now I can't help but to doubt the results.
I resumed my obsessive googling and found that, of course, Lyme causes unusual depression and anxiety. I don't get as anxious about it anymore, but I'm now back to worrying and wondering if Lyme is still a possibility.
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? Thank you for reading this very long story that was 100% typed with my phone, so now my thumbs are on fire, lol.
I'm just sick of feeling this way and am looking for answers. A GP would definitely just tell me I'm depressed, and give me anti depressants. I am seeing a psychologist who is trying to diagnose me with something as well.
**edited to add more space between sentences .. please help your fellow members by creating more space in future postings .. thanks!**
**also edited out the name of an LLMD per LN rules**
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
how bout getting igenex? that would be pretty definite I think.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
quote: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?
Welcome to the forum. You came to the right place for questions on Lyme disease.
First off, stress makes these infections worse. Please try to relax. Secondly, muscle twitches, depression, and OCD are definitely symptoms of Lyme, but from my experience and observations, they usually become problematic when coinfections are present.
Symptom lists about Lyme disease will usually lump all the symptoms from Lyme and coinfections all in one bucket list. That's understandable since it is usually hard to differentiate between symptoms from "this" infection versus symptoms from "that" infection when it comes to tick-borne diseases.
You say you have had symptoms "as long as you can remember." And from what you shared about your LL doctor (I'm pretty sure I have seen her name in previous ILADS conferences speakers line-ups) and the work-up and testing, I feel you have been adequately screened and evaluated for Lyme.
But, you don't mention anything about co-infection testing. I am surprised your doc didn't discuss and test you for the basic ones. This would be my first step if I were you....to go back to her and get tested for AT LEAST the typical coinfections such as Bartonella, Babesia, etc.
Though muscle twitches, depression, and OCD are usually in the Lyme disease bucket list, these tend to be fairly common symptoms of Bartonellosis. The best test out there for that is from Galaxy Labs in North Carolina. It's a triple blood draw over a week's time. Your doc can order the kit and draw and send it off for you. It's expensive, but it's the best test available.
The other good lab would be IGENEX in California. You can get many different tick-borne disease tests through them, and is usually the preferred lab. Your Lyme test may have been sent there if it wasn't thru a typical chain lab.
So, to make a long post short, it sounds to me like you have some type of coinfection, and need to be evaluated for these.
Remember, no blood test is 100% accurate, and according to the CDC, many of these infections (Lyme disease included, according to them) are diagnosed based on clinical symptoms and a differential diagnosis.
Good luck, and keep us posted. I have never seen anyone steered in the wrong direction or been given bad advice here in this forum.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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quote:But, you don't mention anything about co-infection testing.
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.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
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.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
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)
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
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.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
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)
posted
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.
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?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
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.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
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.
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
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.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
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.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
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. Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
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.
Posts: 13116 | From San Francisco | Registered: May 2006
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
"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.
TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
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:
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.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
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:
Page 7 tells doctors how to diagnose it. This document also discusses how inaccurate the testing is for all of these diseases.
Posts: 9931 | From Maryland | Registered: Dec 2007
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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.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
please edit out doctor's name
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
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.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
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.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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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.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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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.
- I was thinking the same thing. Always retain your copy or it could "disappear."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
So, overall, would you all suggest me getting a second opinion, despite the cost, or should I trust my previous LLMD and be done with it
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Anxiety over whether you have lyme does not cause numb feet.
I am not sure the garden variety psychologist is going to be any help with an infectious disease. There are a few, very few, psychiatrists who understand lyme caused mental symptoms. However, these are usually very serious, not just anxiety over the possibility of an illness. It doesn't sound like you need one at this point.
Get your test results and post them here, minus the personal identifiers of you and your doc.
I would be dubious about a lyme doc that goes strictly by test results. They do the testing so that if positive, it gives them some protection when they treat. Not every doc is willing to take the chance with a test negative patient who does actually have the disease(s).
Posts: 2888 | From USA | Registered: Mar 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
We have to see your test results before we can advise you. ALL your test results.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Then, you will understand that any positive results HAVE to be from your body fighting lyme disease.
The lyme Western Blot test does not look for lyme disease in your blood. Instead, it looks for evidence that your body has made antibodies to lyme. If you have made antibodies to lyme, then lyme must be/must have been present in the body.
The antibody is large, so the Western Blot looks for various pieces of it. For example, if it were an elephant, the WB looks for something shaped like a trunk, an ear, the tail, the legs, etc.
The various bands on the WB are various outer surface proteins found in lyme antibodies. Band 41 is the "tail" ,etc.
But, if lyme has fooled your body's immune system, then you could get a negative Western Blot and really, you do have lyme disease. It is just that your immune system doesn't recognize it, so it is not making antibodies against it.
Lyme hides within the body in various ways--inside your cells, etc. So, for many reasons like this, a negative test cannot be trusted, but any positives on the test are good indicators that you probably have lyme.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
quote:Anybody know how I can post a picture for when I get my results?
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.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
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.
Posts: 9931 | From Maryland | Registered: Dec 2007
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quote: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.
Oh ok. I'm not 100% sure if it's advanced labs but I'll have to check on that. I also got two western blots through my pdoc. Which is more reliable, the blood culture or the western blot?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
The thing with the culture is that it still could have been missed .. like a PCR could miss it. But if it had been positive, that would be total confirmation.
Your WB through your primary is likely a Quest or LabCorp ..not that reliable for Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
As we have said before, we look for any positives since they are what can be trusted.
So, you need to post ALL of your tests--Western Blots, coinfection tests, Advanced Labs culture test, etc.
Positives are reliable. Negatives are unreliable.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
So, there's really no way at all to "rule out" Lyme?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
No 100% proof positive way to rule out lyme. But, if you have 2 Western Blots that are all negative bands, and a negative from Advanced labs, and all negatives on coinfection tests done at a good lab like Igenex, then I would probably stop worrying.
However, if you have a number of symptoms that are suspicious of lyme, then I would try some lyme treatment to see how you react to it.
Read how lyme is diagnosed in Burrascano:
"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
Focus on the very last sentence: An important factor in making the diagnosis is response to treatment.
So, if you have symptoms of lyme a good lyme doctor will give you a trial of lyme antibiotics to see if you have a herxheimer reaction or if you improve, or to see if you have 4-week cycles of waxing and waning of symptoms while on lyme meds.
When he says that "lyme is diagnosed clinically" he means that it is diagnosed using the doctor's judgement. No test can tell you for sure. You look at all the factors he names and then you give the person some lyme treatment. Then, the doctor makes a judgment call based on the evidence.
Lyme is difficult to diagnose.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
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. Posts: 1308 | From Eastern USA | Registered: Oct 2013
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
I thoroughly support what TF has just posted!
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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MannaMe
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Member # 33330
posted
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.
Posts: 2247 | From USA | Registered: Aug 2011
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Carol in PA
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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."
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.
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.
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?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
And I should be getting my test results from my psychologist tomorrow, so I'll post them ASAP
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
Also, the only issue I have with thinking my dad passed it to me is that if I've had it all my life, wouldn't my symptoms have gotten worse, now that I'm almost 21?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
Sorry for posting like three questions in a row, but one more. How can I treat myself to see if there's a reaction consistent with Lyme? Do I need antibiotics, or is there a more natural approach, like certain supplements?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
As best I can tell, I have had lyme disease either all my life or since fairly early childhood. I do not think there was much progression during childhood, but, as an adult, I think there was very slow progression.
Then, one day, I experienced a physical and emotional trauma, and symptoms skyrocketed out of control. The reaction was problematic to the point that doctors were questioning what else was going on that would have allowed/caused that reaction.
Eventually, we found that the lyme disease was a big reaon why. Even with significant treatment, I do not believe that I have not gotten back to where I was before then.
So, to share, sometimes things progress very slowly, but there is potential for that changing.
I would say, yes, there are herbal supplements where taking them could potentially give you a sense of whether you have lyme and/or coinfections.
There are also acupuncture practitioners who treat allergies to substances, where they have vials with the energy of the substance. The person holds the vial during acupuncture treatment. But "energy testing", a.k.a. kinesiology (pushing arm down, etc.) can be done to determine if there is a reaction and if treatment is needed. Finding such a practitioner with the lyme vials could also be informative. There are a few types of treatment like this, but NAET is the most well known, I believe.
Posts: 1927 | From se usa | Registered: Mar 2010
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TF
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posted
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.
Posts: 9931 | From Maryland | Registered: Dec 2007
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quote: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.
Well I haven't shown the results to my dad, but he swears by Dr G and told me that if she said its negative, I should stop worrying about it. But idk now.
My psychologist only has the results from my Lyme Doctor, not the two western blots (unless she took a western blot too, idk). Those I'd have to get from my pdoc
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
Of course on the portal for my general medical records, it doesn't give me a detailed report for the Lyme Western Blots. It just says "negative IGG,IGM" and under details it says "REPORT". I guess I'll have to call tomorrow when they're open
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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TF
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Yes, it is very important that you get complete copies of the actual test results.
The conclusion of "negative" means nothing. We need to see the detail. Be sure you get every page. There will be an IgG page and an IgM page.
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.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
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WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TNT
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posted
quote: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?
If it is because of Lyme disease or it's coinfections (or any infection), YES, it needs to be treated. You will not get rid of the depression until you do. And, yes, things will most likely continue to get worse if you have Lyme or coinfections.
How you treat it is up to you, whether conventionally or naturally. There are different types of ILADS docs. Some treat conventionally with ABX (antibiotics), and some treat more naturally. I think Dr. G would be integrative (do both)??
From what I have seen with others, and have experienced for myself, I feel the best approach is ABX WITH natural stuff (like herbs). More people have success combining both approaches than have success with either approach alone.
But, as TF said, you are getting ahead of yourself. Let's see what all you were tested for and by which labs. We will have better advice once we know that.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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Keebler
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posted
- While the consideration of what is the cause / set of causes can be daunting, one by one, it is important to work through.
INFLAMMATION is likely a big part of this and that can have many causes. Of course, there are many ways to be exposed to lyme without even knowing how / when. Tick bites often go without notice, but lyme can also be carried by mosquitoes.
While working through all these, whatever you can do to get good nutrition, good AIR, that matters.
Either separately, or possibly together with lyme or other TBD (tick-borne disease) -
or various other chronic "stealth" infections such as Mycoplasmas, Chlamydia Pneumonia, Herpes family, etc. -
there can be various factors that contribute to or cause depression, anxiety, OCD. Some of those:
Vitamin / Mineral deficiencies or imbalances -- see Carol in PA's post above with magnesium links
Exposure to chemicals in environment, personal care products, and even to some medications
Vinyl flooring (even a vinyl shower curtain), new carpet, new bedding, new upholstered furniture or textiles as most are doused in fire retardant chemicals
New car interior is very toxic (likely many of us can't afford a new car but just in case, it's important to know this)
Air fresheners used in older cars, home can be very toxic and that can trigger all kinds of mental health symptoms due to the toxicity.
Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease
- by a leading ILADS LLMD - November 2013 -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Herbal Safety considerations & reference books; etc.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TNT
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posted
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.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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posted
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".
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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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.
Yes, I'm thinking of seeing Dr H in NY if need be. Does anyone know of him?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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Keebler
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posted
- A couple of things to avoid if you might have lyme / infection: steroids; aerobic exercise (other exercise is important, just NOT aerobic);
and Vaccines. Avoid vaccines (unless you require a tetanus shot due to possible exposure such as a break in skin when around soil).
Hesitating a bit as I do not want to cause "worry" yet this is important detail. This is the time of year that the media and pharmaceutical companies push vaccines.
For anyone who might have an infection or is in ill health, vaccines are not advised. Many here have had damage from vaccines (I sure have, twice).
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.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
By "better" I mean a slight mood lift. Nothing substantial, but no adverse effects.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
Do people with Lyme typically react negatively to aerobic exercise?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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 ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
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".
Posts: 8981 | From Illinois | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
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?
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
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posted
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?
Posts: 9931 | From Maryland | Registered: Dec 2007
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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).
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sixteen points to consider, please share with your father as well.
Even if you might not have lyme, you may find some answers here:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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