Lyme Disease Community
Lyme or?
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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Lyme or?


Thank you to anyone who reads this. It's kind of complicated, but I've been really stressed over this for so long and wanted to know others' opinions.

Prior to all of this, I was looking for a job and stressing over the fact I was (still am) unemployed. Though that made me feel stressed, I was quite optimistic and happy.

About two months ago I was listening to music with earbuds and noticed shortly after that I had slight ringing in my ears. I panicked after reading about tinnitus and how there is no cure. Went to a wedding later on and realized everything sounded way too loud. My ears hurt when people talked too loud and the music seemed terrible! I stayed out of the room a lot that night, feeling isolated and scared.
Thinking I damaged my ears even more from the wedding, I got even more stressed, anxious, and depressed. My hearing sensitivity remained for over a week. Things like pots and pans hitting eachother and people talking at normal levels made my ears feel weird.
I found out magnesium may help so I started taking that for a week--more than recommended dosage. A week later I noticed my wrists were clicking a lot. Randomly, but a lot more than I noticed before. A couple days later I noticed my knees were sore.
I had been holding my iphone a lot more than usual--researching tinnitus, so when I think about my wrists clicking and occasionally hurting, I wonder if it was caused by repetitive use, but still worry.

There are a lot of possible reasons for my knees. I've gone for long walks for years and around this time I had gotten new shoes that didn't fit right. Wore them a couple days and stopped because they hurt my feet. My old shoes were really worn out, but seemed more comfortable than the new ones, so I kept wearing them for about another week. My knees continued to ache, so I went to buy new shoes. While I was stressing about my ears, I didn't walk quite as much and sat around a lot. This could have contributed as well--(when I started walking again, I started out with too much too quickly maybe?)

I then noticed my knees would pop when I bent them backwards--so I freaked out, thinking maybe the magnesium I took weakened my muscles or something, causing all these symptoms. I felt like a hypochondriac, but I had already been really stressed over the ear ringing for weeks prior to this.
When I went to the doctor, he did some tests for magnesium, calcium, thyroid, and phosphorus--all normal, and diagnosed me with patellofemoral pain syndrome (pain in the knees). I started reading about that syndrome online a lot, finding out it could be chronic, which then fed my stress and anxiety. I started going to physical therapy and my knees haven't hurt like before. I am wondering if it really was just my shoes. My PT also said I had hypermobile joints--I can bend my knees back farther than normal.

What worries me still, however, is that all of this started around the same time and for many of these weeks I have been getting random muscle twitches throughout my body (legs, arms, back) and have been getting dull back aches as well. A couple days ago I even noticed my arms and hands were tingling. These could be the result of using the computer a lot, but I always use the computer and never had all of this happen before.

I was tested for lyme disease last week and it was negative, so it made me feel better. Last year I was bitten by two ticks--which I am pretty sure I pulled off right away. I'm still concerned about LD because I am always outside and like to hike on nature trails. This year I spotted two ticks sitting on blades of grass, but haven't noticed anymore on my body.

I would just like to know what anyone here thinks about my story. Could I just be overreacting? Could all of my recent symptoms be caused by constant stress and the contributing factors like bad shoes, posture, and overuse (of my phone and computer)?

I have had more energy lately--before I was so stressed I could hardly think about anything except the possibility I permanently damaged my knees and the ear ringing. I cried a lot, felt really exhausted and depressed.
I've always been an anxious person, stressing about a lot of little things. Depression isn't knew. I was fine before the past couple of months, however.

My knees don't hurt like they did. Went for a longer walk yesterday, but my wrists continue to act up--tingling and clicking with some pain and my muscles continue to twitch randomly throughout the day.
My ears still ring, but I'm getting used to it--it isn't loud, just scary and stressful at first.
I had no flu-like symptoms except headaches--possibly from stress...

Am I just being oversensitive? Is this stress or could this be something like lyme disease? I know LD can cause a lot of these things, but so can stress! I keep reading LD tests aren't always reliable and that starts to raise my stress level a lot. I really don't have terrible joint aches like a lot of LD symptom lists describe.

I know stress causes bad physical symptoms sometimes--muscle twitching included.

Thank you again for reading. Sorry if it is a little confusing! Just needed to talk to others about it.
60 Comments Post a Comment
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"I was tested for lyme disease last week and it was negative"

That may mean absolutely nothing about whether you actually have Lyme or not. Sorry to inform you of that but hard facts are real facts when it comes to Lyme disease or it's co-infections.

The negative test result will be even less important if you had it taken through a lab sanctioned by the CDC and IDSA.  
Do you have a copy of that lab test? It will be very important to keep records of all your tests, since it appears you have a complicated case----- but then all Lyme cases are complicated. :(

The week-end is usually fairly quiet but I'm sure people will be offering some ways to find a good doctor. Right now I have to go------ but here's some reading material for you about Lyme. Google ILADS and go to their web site.
And always remember, none of us here are doctors and able to diagnose. But we can give suggestions.

You mentioned having flexible joints: you may have something called  the Ehlers-Danlos syndrome. Mayo Clinic describes it

"Overly flexible joints. Because the connective tissue that holds joints together is looser, your joints can move far past the normal range of motion."

There are varying degrees of flexibility and it is usually simply just 'there' and not cause for real concern. Read up on it on the Internet but don't get stressed by it if you just  have some mild symptoms .

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Thank you for your reply. I have Kaiser, so my tests were done by whatever lab they use and I don't have the results. All I got was a message saying "negative".
I wonder if I could get a copy of it from them?
I looked into Ehlers-Danlos syndrome and I am not sure if I have that or not. A lot of my joints are hypermobile, but have never given me trouble before. Not until now.
I'll look into that more.

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I wouldn't bother worrying about Ehlers-Danlos. I just threw that out as a possibility. Sounds as if your knee problems MIGHT be related to Lyme-- again, because Lyme can imitate so many different problems...........

If you belong to Kaiser then I can safely say that unless you're extremely lucky with a doctor there who will risk his employment there by treating you for Lyme you will have to get treated outside of that HMO on your own nickel. I know many people (some personally) that were in the same position as you. Dr. Ray Stricker in S.F. went on Grand Rounds with a doctor at Kaiser. He also had no luck getting through the denialism that Kaiser has about Lyme. :(

There is a site you should read called thekaiserpapers. I personally find a lot the information there a bit too lurid----- but I also believe just about every word written on it, if that makes any sense. It's not 'by' Kaiser but by a man who has/had Lyme and belonged to Kaiser. He had to get his own treatment (out of Kaiser) and has put this site up for all Kaiser members, Lymies or not.

Here is the page devoted to Lyme:

http://lyme.kaiserpapers.org/lymevictimadvice.html

So---- if you can't afford to go outside your HMO for tests and treatment ........ I don't know what to tell you. I think only one person has successfully sued Kaiser (about non-treatment for Lyme) but she only won that suit because at least one doctor verbally abused her and they paid her something like $17K or so for abuse. Not because they didn't treat her for Lyme. :) She was a smart cookie who had to spend a lot of her own money suing them. :(

Back in 2006 a different woman wrote:
"After trying to seek a diagnosis for seven years, seeing over 25 doctors at Kaiser, Stanford and even my own local health community, I got no help at all. Only through others with Lyme and its co-infections was I able to find a doctor who would work with me to regain some of my health."

Not much has changed, for the better in the meantime. But there ARE doctors who will treat you if you look hard enough.


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Sorry about your sickness but when you are tested by mainstream labs they usually come out negative. Your symptoms can get much worse and since you were bit by ticks, it sounds like Lyme and you could have one or more co-infections that most ticks carry.

What you will need to do is find a Lyme literate doctor (LLMD ). Our association is called ILADS dot org. You should contact them and ask for an LLMD near where you live. Also read sme of the articles there.

LLMD 's  use a more accurate specialized lab called IgeneX. I tested negative from a regular lab test but positive by IgeneX for Lyme and 2 co-infections.   Many of us get misdiagnosed with several other diagnoses. An LLMD can tell you if you have Lyme or a different illness. They call Lyme the great imitator.
I was bit over 20 years ago and only wish someplace like this existed then.
It can save you a lot of time and effort.

Keep us posted.

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Welcome to MedHelp --

I think you are asking all the right questions.  Whether you have Lyme or not remains to be seen, and as you already have found, it's a complicated area of medicine, because the docs are all over the place about how common or rare is it, how widespread or not, how to test for it, how to read the tests, and finally -- how to treat it and for how long.

Kaiser is really good at a lot of things, but they have fairly set formulas for making diagnoses, so you are not like to find a doc who takes a progressive view toward Lyme and the infections the tiny ticks can bring.

This is Lyme season, so you are in good company -- as if you want to be here, huh?  But here's the good news -- you are asking all the right questions, and sometimes it takes people years to even get as far as you are already in figuring out what is going on.

First off, your feelings of anxiety and concern are common to those with Lyme -- the infection has way of messing with body chemistry, including the hormones that affect mood and thinking.  Doesn't mean you *have* Lyme, but if you do, then what you are going through is very, very common.  It goes away with treatment.

You give a good history of your bite and your symptoms, and that is very valuable information to a doc who knows how to interpret it.  You might make some notes (on computer if possible, so it's easy to print out and read ... gotta make stuff easy for docs ...) just as you have above, so a doc can read that and put it in your file.  Memory can be an issue with Lyme, due partly to the anxiety that the infection can cause, and seeing a doc is nerve-wracking any way.

Back to your email:

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You write:  "I would just like to know what anyone here thinks about my story. Could I just be overreacting?"

My comment:  Could be, but I doubt it.  If you were overreacting, I doubt you would wonder if you are ... overreacting.  You are working through your symptoms and giving a calm presentation of them, and that indicates to me that you are working your way through things calmly.  Not overreacting.

"Could all of my recent symptoms be caused by constant stress and the contributing factors like bad shoes, posture, and overuse (of my phone and computer)?"

Maybe, but it doesn't seem likely to me that you would have such specific physical reactions to things that haven't changed lately:  shoes, posture, phone, computer.  

"I have had more energy lately--before I was so stressed I could hardly think about anything except the possibility I permanently damaged my knees and the ear ringing. I cried a lot, felt really exhausted and depressed.
I've always been an anxious person, stressing about a lot of little things. Depression isn't knew. I was fine before the past couple of months, however."

Again, you are thoughtfully working your way through how you feel now, how you have felt before (and stating honestly things like past anxiety), but now sounds truly different from before.  

"My knees don't hurt like they did."

That's good -- Lyme symptoms can come and go, however.

"Went for a longer walk yesterday, but my wrists continue to act up--tingling and clicking with some pain and my muscles continue to twitch randomly throughout the day."

Twitching is common with Lyme, because the Lyme bacteria use up magnesium in your body, and low magnesium levels interrupt or confuse messages between muscles cells telling them when to contract and relax.  Muscle cramps and twitches are common in Lyme.  You might want to try magnesium supplements, any variety ending in '-ate', like magnesium citrate, orotate, aspartate, etc., because they are easy for the body to absorb.  I personally like capsules instead of hard pills, because the capsules seem to dissolve better in the body and be more effective.  If you take supplements, be sure to tell the doc you see that you are doing so, so it can be factored in.

"My ears still ring, but I'm getting used to it--it isn't loud, just scary and stressful at first."

This isn't uncommon in Lyme.

"I had no flu-like symptoms except headaches--possibly from stress..."

Lyme feels different to each person.  For me, it felt like I had the flu and a hangover at the same time.  Some people feel just tired, and everything in between.  Partly it is just body chemistry, and partly symptoms from co-infections, meaning other infections that the Lyme ticks carry about half the time along with Lyme.  It causes the symptom picture to vary in each person, which confuses docs who are not schooled in Lyme.

"Am I just being oversensitive?"

I doubt it.  You give a good, rational history and sound calm.

"Is this stress or could this be something like lyme disease?"

Could be stress, but if you don't usually react to stress this way, then I'd consider Lyme etc.

"I keep reading LD tests aren't always reliable and that starts to raise my stress level a lot."

You're right, the tests can be unreliable.  Some are better than others, but many docs rely on the older and less reliable tests, so it's easy to get a 'false negative' result, meaning you are infected but the test says you are not.

"I really don't have terrible joint aches like a lot of LD symptom lists describe."

Everyone's symptoms are different for all kinds of reasons.  There is no one fixed presentation of symptoms for Lyme.

"I know stress causes bad physical symptoms sometimes--muscle twitching included."

Yeah, but so can Lyme.
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[continued from previous message]

So now what to do, given the negative test result your doc reported to you?

Here's the problem:  the standard tests are notoriously inaccurate, but docs who are not Lyme specialists don't understand that.  There is a split in the medical community about how widespread is or is not, how common or not, how easy or hard to get, how reliable the tests are, whether or not to test for the other diseases the Lyme ticks carry, how to read the test results, and finally:  how to treat Lyme and its co-infections and for how long.

I personally went through 20 MDs before getting a Lyme diagnosis, and I was very ill.  One doc looked at me and said, "I know you are sick.  I just don't know what it is."  Another doc, who in desperation ran a Lyme test on me that came back *positive for Lyme*, said:  "Oh, you couldn't possibly have Lyme -- I have patients with Lyme, and they are all near death."  (Thanks, doc!)  I know now that people don't normally die from Lyme, but any doc who is stupid enough to base a diagnosis on waiting to see whether the patient dies is not a doc who should be practicing.

There are MDs who DO understand Lyme and DO know how to treat it.  Once that last, stupid doc got a positive Lyme test on me, I went straight to a Lyme specialist, was diagnosed with Lyme and one co-infection similar to malaria, was treated, and am now FINE.  It took over a year of treatment, but it was def. worth it.

The trick is finding a doc who understands Lyme.  You don't say where you are located, but if you will tell us that, we might have some suggestions, tho we do NOT post doc's names in public here, because local and state medical boards who believe 'Lyme is rare, hard to get and easy to cure' are often looking to put more progressive docs out of practice.  

If you will let us know about where you live ("Kansas City area" or "southern Florida") we might have some suggestions for you from personal experience.

You can also email to

               contact  [at]  ILADS  [org]

and tell them where you are located ("near Dallas" or "Northern Michigan") and they can send you names of Lyme specialists nearby.

ILADS is the main voluntary group for Lyme specialists who take a more progressive view of diagnosis and treatment of Lyme, short for 'International Lyme and Associated Diseases Society.'  Docs who understand Lyme are sometimes referred to by patients as 'Lyme-literate MDs', abbreviated to LLMDs.  It's not a formal title or degree, but is a way to differentiate between docs who don't understand Lyme and those who DO.

Sorry to dump all this on you, but don't worry, it will start to make sense eventually.  Good for you for finding this website and asking the hard questions.  Don't give up till you get answers that make sense to you.

Stay in touch and let us know how you do, okay?  Best wishes to you --
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... and PS, do get a copy of your Kaiser test results, and ask for the detailed report, not just a summary.

Sometimes there is data useful to an LLMD that didn't look important to a nonLLMD.

I believe by law that you are entitled to full copies of all your medical records.  Be persistent.
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Thank you everyone. I'm on my phone and will respond better later. I contacted ILADS and asked about an LLMD. I'm located near Sacramento California.
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Oh, excellent!  There are good LLMDs in the Bay Area if you don't find one in Sacto.
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You're not too far a drive from San Francisco where the Dr. I mentioned that went on Grand Rounds with a Kaiser Chief of Staff practices. You won't have any problem convincing him that your Kaiser results aren't worth the paper they're printed on, but professional courtesy may prevent him from saying that. :)

A word of caution----- not all ILADS members are as good as I would hope for. All a person with a professional license has to do to become an ILADS doc is to pay the yearly membership, be mentored by an existing ILADS doctor. Then they're an ILADS doctor. Some (not all) go back to their own beliefs on how to treat Lyme.

I personally know one because a friend and myself convinced an ND to join ILADS and he was introduced to and mentored by the above mentioned doctor so I knew all the details.

One doctor in WA, an ILADS member, will treat with abx but also recommends his own protocol for the easily swayed.

Google Klinghardt Academy, click on his Lyme pages and prepare to be amazed.

There are others that I personally know about that use non-science-based medicine but who might treat only with abx if the patient insists. (I went to one of those.)

No other disease has as many 'patient beware' problems as Lyme. :(


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A further comment in passing:

There is an informal rule among many of us on this site NOT to give names of LLMDs in the open here.  To do so can lead those docs to be targeted by other docs who are not as progressive.  There is nothing sadder than an LLMD run out of practice by a state medical board, but it happens.

So you will see us refer to "Dr M" or "Dr D", and if you want to know who it is specifically so you can see about becoming a patient of the doc, then you can send a private message (PM) through this system to the person who made the comment.  If you need help figuring out how to do that (it's a little confusing, but not complicated), let us know.
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PS  I just remembered there's an easier way to send a PM than I first learned.  If you hover your mouse/pointer over the name of the person you want to send a message to, a small box will pop up that has several links in it.  One is 'send message'.  Click and go.  

(Thanks for the hint, Rico!)
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Oops----- I could have sworn I've read here that using the names of  'in the public eye' doctors is permissible. Dr. S and Dr K are both doctors that are very much in the public eye so I thought it was o.k. (Dr. S as past president of ILADS and numerous articles and Dr. K in UOS, not to mention many other places.)

I'll have to do a little digging around in past posts.

But I do agree that doctors that are NOT in the public eye and treat Lyme should remain as anonymous as possible. We definitely do not want them harassed.
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There are no rules.  Docs are not nominated and elected to no-name status.

How do you decide who is in the public eye and who is not?  There is no list split into 'docs who are out' and 'docs who are not.'

It's a matter of discretion.  Dig around if you like, but this is an issue without a final, firm answer.  

Because there are new people coming here every day who may not yet appreciate the bind that LLMDs are in in some states, it is safer imo not to name docs as a rule of thumb.  But I don't own or run this website, so I don't make the rules.  None of us does.

Someone new coming here might see Dr X mentioned, a name that you may deem sufficiently out in the public to name in full, but a newbie will not have the background to understand that before the newbie then spills the name of another doc who is NOT 'out' -- or at least wasn't until the newbie accidentally dished.

Why take that chance?  There is generally no need to name docs here.

If you can figure out a way to determine which docs are 'in the public eye' and which are not, look at various state laws and informal practices on how they treat LLMDs, make the final determination whether it is a risk to a particular doc in a particular state, and keep that list updated, why take the chance?

Looking forward to your rationale and how you will determine for your list (which would need to be constantly updated) who is public and who is not, and how you will explain that difference to newbies ----  thanks
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Hi again everyone! Thank you so much for the information. I contacted an LLMD in Sacramento after being referred to him by ILADS and a Lyme disease meetup group from around here. I haven't made an appointment yet. It will be expensive and I hate having to spend that kind of money, but these strange symptoms and knowing I've been bitten makes me think I should.

I am really scared I may have lyme, especially now, but I'm glad there are people here to help.

To any of you that have twitching from lyme, how does it feel? Do you feel twitching in random parts of your body for a couple of seconds all day? That's how it is for me. Right now I think I could make myself forget about my other symptoms if it wasn't for the annoying twitching.
Last night I also noticed my hearing sensitivity came back a little after going away. People screaming and yelling at a barbeque made my ears buzz.

I really appreciate all your help.
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"How do you decide who is in the public eye and who is not?"

I usually try to follow where others have gone before me, especially  respected and long time members here,  and I see there are a lot of posts where you and others have posted the full name of Dr. S.

Here are just two threads. There are many more.

http://www.medhelp.org/posts/Lyme-Disease/Scientific-Methods/show/1555900

http://www.medhelp.org/posts/Lyme-Disease/Lyme-Disease--The-Next-Decade/show/1556549

Dr K has also been mentioned, full name, in some previous posts also.

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"Right now I think I could make myself forget about my other symptoms if it wasn't for the annoying twitching."

The twitching IS annoying (I've had it for a long time). But it's the least annoying of my symptoms. :)  May all your symptoms go away---- forever.
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Thank you. Hope your symptoms go away too!


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My twitching comes and goes. I have more trouble with "electric shock" like pains that come and go in my feet.
Have hope these all shall pass as we get better.
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If it doesn't work out with the doctor I found up here, I'll contact you about one in SF. Thank you for letting me know. :)
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We can chat via PM about him, if you want. I was one of his first patients. He's not infallible (no one is) but he is one of the best around and I'm so glad that I was his patient for many many years.

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The one certain thing about Lyme is that it is different in everyone.  I know, that's not much help, but perhaps it will give you comfort when you see that no one else has exactly what you have.  

Not to worry -- we all live with that ambiguity, and after a while it won't seem so strange, if you have Lyme.  

Yes, the docs can be pricey, but nowhere nearly as expensive as being permanently ill.  
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Yeah, and once I realized that it was confusing to newbies to see some doc names, I stopped doing it.  Better that than 'out' a doc who didn't want to be.

Do what you will.
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Splendid that you have an appointment!!  Good for you.

Magnesium (Mg) supplements may help the twitching.  Mg is needed for the muscle cells to communicate to each other, and if the Lyme bacteria are using up the Mg (as they like to do), then the cellular communication will the jumpy.  Mg supplements are fairly cheap, and the American diet tends to be deficient in it anyway.  

I have read that any kind of Mg ending in '-ate' is most absorbable:  Mg citrate; aspartate; orotate; malate; etc.  Capsules may be easier to digest than the big honking pills, and may be more easily absorbed.  I ran out of the capsules and bought some huge Mg pills recently, and yuck! hard to swallow, and maybe not as good as the capsules.

Be sure to take a written list of what meds and supplements you are taking (and in what doses) when you go to the LLMD ... so the doc can factor that in to your symptom display.  
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Oh, I didn't realize you'd stopped mentioning LLMDs by name. I guess I saw the the last time you did in Jan 2013

"  Stricker is one of the well-known LLMDs, no secret there -- so I don't hesitate to mention his name in the open. "

I remembered it well and just thought it was o.k. My bad?

Thank you for all you do to help keep our llmds safe.


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Hi Kittatt,

I haven't been very active on the board but saw your post and had to reply.  About six months ago or so (????), I started having ringing in my ears and I too was FREAKING OUT!!!  Constantly on the internet, researching, etc.  Literally, it was taking over my life.  

Anyway, I wanted to let you know that it does get better.  I still get it but it comes and goes and I'm abl to better deal with it now.  I went to two ENT doctors, had my hearing tested.  Of course, as us lymies hear a lot "everything is normal!".  ha ha

Anyhow, I DO have lyme disease and am currently on ABX treatment.  Also, I have periods of extreme sound sensivity just like you describe.  For about six months or so last year, I couldn't stand to hear my family empty the dishwasher, the tv had to be always turned down and I could not go to anything where noise was a problem.  It was really bad.  But...as lyme disease goes...this too went away.  I still have problems with it but not nearly as bad as that one episode.  I was working on some refinishing of a piece of furniture with my son-in-law and the sanding noise was just too much for me and I had to put earplugs in.

Also, the twitching...I had it BAD last night.  First it was in my thigh, then it moved to my buttock.  Sometimes I get it in my lip and I feel like Elvis when that happens!  ha ha  Once, I had a bad twitch on top of my right knee area that lasted for two days straight with no let-up.  Again...this all comes and goes and I feel like when my body is actively fighting this bacteria is when all this acts up.

I'm in Pleasanton, CA, so not too far from you. I know it's a lot of money to see an LLMD, but our health is worth it.  My insurance reimburses me for my visits which is nice, but I must pay out-of-pocket to the LLMD.

I see the same LLMD that Jackie is taking about.  He is wonderful.  He is also very busy and booked.  The first time I called him, it was a 2-3 month wait but I said to put me on the cancellation list since I was close and I was in his office the very next week.

Also, when I first came down with symptoms, I had crazy numbness in my face, feet, toes, and leg.  Within two weeks of starting ABX, that all went away.  

Good luck to you!!!
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Wow! That does sound like me! I got my hearing tested as well.--same results. "Normal!"
I think they actually said my hearing was above normal--That's the hearing sensitivity I'm sure!
The tinnitus and hyperacusis took over my life for awhile as well--now I wish that was all it was!
Along with a constant high pitched tone, I hear loud tones that last about two seconds sometimes. The constant high pitched one thankfully blends in with everything unless I think about it.

The twitching does feel really weird. I haven't had it on my lip so far, but it seems to jump from my arms to my legs all day.
My hands haven't felt numb for the past few days. Hope the tingling doesn't come back...

I'm glad it gets better. I don't feel so alone in this now hearing from you and the others.

I'm going to see the Doctor closer to me first, but will definitely look into seeing the one you go to if I need to. Especially since he sounds like a good one. :)

Good luck to you too!
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I'll look into taking some magnesium. Thank you! :)
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I'm sending you a private message ('PM') through this page.  

If you are not familiar with how to access PMs, look at the very top of this page at the blue band saying

             MEDHELP / forums / tools / information / experts / My MedHelp

If there is a number after 'My MedHelp', click on it and it will open the messages page, then go to 'inbox'.
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Your story does sound like Lyme Disease is developing.  The tinnitus, sound sensitivity, joint issues, twitching, and anxiety are all common symptoms of disseminated Lyme.  You are very wise to go to an LLMD right away.  If you do have it, which I highly suspect given your tick bites, the sooner you start antibiotics the better.  Kaiser is very strict about diagnosing and treating Lyme. You've already tested negative, so the LLMD is your only real choice.  S/He should test you at IGeneX, which is often more helpful than the CDC testing protocol.

I am in California, too.  I suspect that more of us out here test false negative since we have different genetic strains than they do in New England where the test interpretation was determined.  Disease presentations are different out west, too.  For example, among the reported cases in California, only half report an erythema migrans rash.  Back east, reported cases are 60-80%.  (Of course no one knows the stats in the unreported cases, because NO ONE IS TRACKING THEM!  That makes many generalizations and statistics unreliable.)

Anyway, I just want to confirm that I think you're doing the right thing.  Do what you have to do to get well, even if it's expensive.  It's better than lifelong illness!
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I just received a pdf from a physician-only discussion community, Medscape Connect, posted by Dr. Alan MacDonald----- on a different Lyme forum---- that is somewhat connected to what you talked about.

He named it Borreliosis versus Lyme - A Time for Divorce

I can't give you a link (it was downloaded to my computer) and I also can't give you the name of the public Lyme forum because of the rules here.

Dr. MacDonald freely gives his email out so perhaps you could contact him.

What I may do is request permission from him to copy/paste the entire .pdf. Later, when I have time.




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As far as thyroid goes, I hope you had sufficient testing. Your symptoms can all be thyroid symptoms to.

Some Drs only test TSH as a screening test. TSH is only a signal hormone, and not that accurate.

Free T3 and Free T4 are what is needed. If you had these tested, great, if not, you need them. They are regular insurance coded tests any clinical lab can perform.
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Agreed about thyroid ... Lyme can often effect thyroid function, rather than thyroid being a separate issue.  My thyroid function was way down, and I was on thyroid meds until Lyme treatment kicked in, and whoa!  

My thyroid came back online in a hurry -- I realized what was happening after being wide awake ALL night one night:  I was at that point, on the thyroid meds, HYPERthyroid (too much) rather than HYPOthyroid (too little).
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That is interesting! I am pretty sure my TSH was the only thing tested.
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If your Lyme doc keeps an eye on your thyroid function, the doc will know if and when to modify your dosage.  Just be sure to call the doc if you find yourself with the problem I had -- totally wired and unable to sleep.
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There are a lot of people in the general population with low thyroid that test OK (Drs opinion) per the TSH test. 2003 guidelines for TSH are 3 to 3.0, but some Drs use the older range. Still TSH is not that accurate.

The available "free" hormones that are measured also have a very wide range. If Free T3 or Free T4 are at the bottom of the range, thats not good, and will make slight symptoms appear.

T4 is the storage hormone that is converted to cell consumable T3 on demand in your body. T4 loses one of its four atoms of iodine, in order to fit into cell receptors. T3 is fuel for all and any cells in your body.

General hypo thyroid is not permanent and can be triggered from many infections, as the thyroid is a very fragile gland.

Hashimoto hypothyroid is different (but most common) and has specific thyroid antibodies attacking the gland for reasons unknown. These antibodies (TPO and TgAb) physically alter the performance of the gland making daily replacement hormone a necessity.

So in your mission (check off list) of finding out what is wrong with you, this is a detailed area needing detailed testing. It is possible to have this all on its own, or with Lyme as Jackie mentioned.

there you go

LM
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Gotta change your name to KnowledgeableMoose.  :)
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Or sometimes BrainFogMoose.............

My correction in decimal placement.  2003 guidelines for TSH are .3 to 3.0

LM
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Thank you for all of the information! I will talk to my doctor about this.

I went to see the doctor on Wednesday and he ordered some tests. I'll get them back in two weeks.
I have another question about my symptoms. My knees haven't been hurting for the past 4 days or so, but yesterday they started grinding and popping a lot more.
I've been really scared because the damage seemed to progress pretty quickly. I'm almost afraid to walk.
Do any of you have a grinding/crackling sound when you bend and straighten your knees?
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The symptoms like sore or clicking knees usually come and go.  It's pretty common, and annoying of course -- but try not to worry about it.  From now until your appointment (!!!) make a running list of your symptoms ... just keep a pencil and pad nearby and jot down a symptom when it pops up, if it's one you haven't noticed before.  

I was always so wound up when I saw the doc that I couldn't remember anything ... and notes saved me.

A lot of Lyme symptoms come and go, and knees can do that too -- try not to worry -- treatment works miracles.  You'll get there!  

.... and remember, it's also part of Lyme to feel worried and anxious about what's going on, because of the way Lyme messes with your endocrine system.  I felt anxious, worried, and nervous until I was treated.  It's not you:  it's the bugz.  

It helped me to keep a running calendar of my symptoms on what days and how bad or good I felt -- how well I slept, etc..  Some docs like to review those -- my doc did, so I'd take the list with me.  I kept it on computer, but handwritten works too.  

Even if your doc doesn't like to review your list, it is useful to review just before your appointment so you can report accurately on how your symptoms have been, how often, what trends, etc.

I felt calmer after I had written it down, because I knew it wasn't my imagination:  it was real, and it was in writing.

Hang on!  Two weeks will go faster than it seems.  Keep us posted, ok?  

For docs who don't want to read the whole thing
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Thank you!
I will bring a list of my symptoms next time.

I'm glad I have a place to go where people understand. You're very helpful. :)
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You're very welcome -- we'll look forward to hearing from you further.  Best to you!

(Sorry for the typos above .. I got interrupted a few times!)
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Hi Kitt,

Hopefully you are still reading this but I wanted to tell you that there is a product called for tinnitus and darned if I can't think of it this second and I don't have the bottle with me here at my office. It's called RINGSTOP!!!  That's it!!  ha ha

Anyhow, I feel that it really really helps.  When my tinnitus flairs (and it is now), I take two tablets in the am and two in the pm.  You can get it at the vitamin store but I get mine on Iherb because it's kind of pricey...(but well worth it).  My ears were screaming over the weekend but I was also having anxiety about stuff and I really notice it when I'm anxious.
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I have tinnitus also and looked at the ingredient for RingStop. Seems it's homeopathic. I'm glad it's helped you.

Ring Stop Ingredients

ACTIVE INGREDIENTS: Calcarea carbonica: (Calcium carbonate) 8x, 30x, Cimicifuga racemose (Black Snake Root) 3x, 6x, 12x, 30x, Carbo vegetabilis (vegetable charcoal) 8x, 12, 30x, Cinchona officinalis (Peruvian Bark) 3x, 6x, 30x, Chininum sulphuricum (sulphite of quinine) 12x, 30x, Coffea cruda (unroasted coffee) 3x, 12x, Graphites (plumbago) 8x, 12x, 30x, Kali carbonicum (Potassium carbonate) 12x, 30x, Lycopodium (club moss) 6x, 12x, 30x, Natrum salicylicum (sodium salicylate) 6x, Salicylicum acidum (salicylic acid) 6x.

OTHER INGREDIENTS: Vinpocetine, Arginine, Alpha Lipoic Acid, Ginkgo biloba extract 24/6%, Chinese Herbal Extracts (Ligusticum, Gui Zhi bark, Chi Shao root, Ge Gen root, Job’s Tears seed, Magnolia flower, and Chuan Xiong root), N-acetylcysteine, Garlic extract, Ginger root, Kelp, Folic Acid, Beta-carotene, Magnesium amino acid chelate, Vitamin B-12, Vitamin B-6, Vitamin A, Zinc amino acid chelate, and Melatonin.

Calcarea carbonica (Calcium carbonate) relieves throbbing and cracking noises, stitches and pulsing sensations in the ears.

Cimicifuga racemose (Black Cohosh Root) is helpful for tinnitus symptoms, and for people who are very sensitive to noise, as well as pain and muscle tension in the neck and back.

Carbo vegetabilis (vegetable charcoal) - This natural remedy is for ringing in the ears, especially if it occurs during flu or other conditions involving vertigo and nausea.

China (Cinchona officinalis) (peruvian bark) helps ringing in the ears and hearing sensitive to noise.

Chininum sulphuricum (sulphite of quinine) helps relieve violent ringing, buzzing, and roaring sounds that are loud enough to impair a person’s hearing.

Coffea cruda (unroasted coffee) is for people with tinnitus accompanied by extremely sensitive hearing and a buzzing feeling in the back of the head.

Graphites (plumbago) - This remedy is beneficial for tinnitus with associated hearing loss, and for hissing and clicking sounds in the ears.

Kali carbonicum (Potassium carbonate) is for tinnitus with ringing or roaring, accompanied by cracking noises and itching in the ears.

Lycopodium (club moss) is for a humming and roaring in the ears, along with impairment of hearing, and sounds that seem to echo in the ears.

Natrum salicylicum (sodium salicylatae) - This remedy is beneficial if ringing in the ears is like a low, dull hum, and for loss of hearing related to bone conduction, as well as nerve interference.

Salicylicum acidum (salicylic acid) - This remedy is indicated for tinnitus with very loud roaring or ringing sounds, which may be accompanied by some hearing loss. It may also be helpful if tinnitus has been caused by too much aspirin.
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Thank you! I'll have to look for that. :)
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I would not take any herbal-type remedies or medicines without telling my doc first and getting an okay.  

Drugs and herbs are all just chemicals, and they may interact in unfortunate ways that make the antibiotics ineffective.  
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Hi everyone.
It's been a few weeks but I decided to post an update.

My western blot came back. I talked to my doctor on the phone today and he said I had antibodies for lyme.

I'm relieved to know I wasn't exaggerating my symptoms and I am really glad I was able to figure out what was causing it, but I am scared at the same time.

It seems like the joints in my body are really loose, so it feels like I'm literally falling apart. There's not much pain at least. I hope treatment will help with this.

I don't know if it was caused by lyme, but last week I nearly passed out twice. One of those times I was sitting in a chair, so it wasn't caused by standing up too quickly or anything. It was really weird. My tinnitus got really loud for about an hour.

I've also been having weird headaches lately, which I blame lyme for.


I have an appointment with my doctor again on thursday to discuss my test some more.

Thank you all again for all the advice!
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Sorry to hear about your test results, but at least it means you know what it is -- and that's the first step toward getting well.

Sometimes Lyme messes with blood pressure and related bodily systems, and no two of us get the same set of symptoms, which is one things that confuses docs sometimes.  Low blood pressure could, from what I have read, cause you to feel lightheaded etc.

I just googled

             lyme disease "orthostatic hypotension"

[with the quotes around only the last two words] and got quite a few hits online.  It's something your doc can talk with you about.  Lyme loves to mess with the body's 'control panel' .... hormones, blood pressure, a lot of the things that we aren't normally conscious of till they start getting strange.

Be sure to bring it up with the doc, okay?  As you get treated, it will get better.

Please let us know how the appointment goes and what the doc recommends as treatment, okay?  Some docs get as far as the diagnosis but then aren't as up to date as they need to be about testing for co-infections (other diseases the Lyme ticks often carry too) or giving something other than very basic antibiotics for a fairly short time.

**Be sure** to get copies of ALL the test reports the doc has -- tell him you want to have time to read them at home, and would like copies of ALL the pages.  Sometimes docs only give the summary page, but for lots of reasons, it's important for you to have a complete set of the test results, now and going forward.  It's sometimes hard to get them later, because doc's offices don't like spending money on copies, and will give you only what they 'think' you need to have.  You paid for the tests, and you deserve a full set of test results.  They have no basis NOT to give them to you.  

End of lecture, you've got enough on your plate -- sorry to hear you have Lyme, but finding out what you have is the first step to Getting Rid Of It -- !!

Hang on, we'll look forward to hearing from you soon -- best wishes!  J.
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I am so glad that your doctor recognizes Lyme antibodies, even when the overall CDC interpretation isn't "positive."

Lyme loves connective tissue, as it's a low oxygen environment and often protected from the immune system. It's probably why your joints feel loose. It's a blessing that you don't feel pain at this point, as some have described horrible joint pain that is crippling.

I have had a variety of different kinds of headaches in my Lyme and coinfection experience. Sometimes dull and low grade, other times sharp and specific.  Headaches are really common with Lyme.

Be sure to be careful when you feel dizzy or light headed.  For me, it would come on without warning.  Passing out and falling can result in a concussion, so you want to avoid that.  In Dr. Burrascano's Diagnostic Hints and Treatment Guidelines, he has a symptom list that includes "unavoidable need to sit or lie down."  You'll know it when you feel it.  I have a lot of experience with that one.  When you feel it coming, sit down, or lie down immediately.  It usually passes for me within a few minutes, but when I was sicker, it could last for a couple hours.

I am not sure if you're seeing a LLMD or not, but make sure that you do.  You'll invariably need more than a couple weeks of antibiotics given your symptoms.  Let us know how it goes!
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Yes I am glad I finally know what this is! I will ask for copies of my test. I don't really understand how the tests work or how they are read but I am curious how my doctor figured out that I have lyme antibodies.

I'll talk to my doctor about being dizzy and mention orthostatic hypotension.

It was very weird. When it happened the second time all I could think about was finding the chair in the other room. Somehow I found it even though I couldn't see! It was definitely an "unavoidable need to sit or lie down" feeling.

It was very strange. I will make sure to be careful if it happens again.
I know it has to be lyme related in some way because it's never happened before; especially two days in a row.

I am seeing an LLMD in my area. When I talked to him on the phone he said I should be tested for the coinfections, so that's good. He also mentioned the antibiotics.

I will let you know how it goes. My appointment is tomorrow.

Thank you again!

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Good!  Be careful driving -- and do relate these episodes to the doc so he's fully aware -- we'll be here when you get back.  Best to you -- J.
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Hello again -- Another update

I went to my appointment. I forgot to ask for a copy of my tests, but my doctor said I had three positives and two INDs. He explained how I would be CDC positive if those two INDs were also positive.

I was prescribed Cefuroxime and Azithromycin for now and am going to be tested for co-infections in the next few weeks.

Also forgot to tell him about almost passing out! (ah!) There was so much do talk about and it was kind of rushed.
I will make sure to mention it to him soon when I get tested for the other things.


The morning before I took any antibiotics I noticed my vision was a little weird, like there is a slight "tv static" appearance to everything. I'm really hoping this will go away. Yesterday I got my eyes checked and have a little bit of nearsightedness, but it doesn't explain the static.

I've always had pretty good eyesight until recently...

Has anyone here experienced something like this with Lyme? Did it go away with treatment?

I've also noticed my knees seem to have gotten even worse today--still very little (or no) pain. It feels and sounds like there are rocks in there!
My thigh joints--or something--have been popping a lot more in the past couple of days too, like they're coming out of the socket. It's really starting to scare me.
All I have done this week is go for walks. Nothing strenuous.

I tried doing some strengthening exercises prescribed to me by my physical therapist because my original diagnoses was Chondromalacia patella (patello-femoral syndrome) or softening of kneecap cartilage, to see if it might help my knees.

This is when I noticed they, and my thigh/groin joints had gotten worse. Almost every time I straighten my right leg, it feels like something is catching.
I feel and hear a loud pop near my upper thighs too... They didn't do that a week ago.
It has to be Lyme. I don't understand how it could get worse so quickly if it wasn't.

I want to go to my PC doctor to get MRIs, but she already showed me my knee X-rays and told me I'm fine. I can't be fine if they're getting worse!

I feel like I need to know how much damage there is.

I am afraid to mention going to a separate doctor for Lyme. Is there a good way to explain this to my PC doctor?

Thank you so much for reading and for you support! This disease makes me feel lonely and strange all the time, but I am glad there are people here to talk to.


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Hi, I am sorry for your problems but I can relate to your feeling of loneliness and feeling strange.

I had the same thing with my vision. It comes and goes with treatment. I am a different case then you, I was bitten over 20 years ago but didn't realize it until 18 months ago.

I have nerve damage which could permanently affect my vision so I see a specialist. I have friends whose vision was fine with treatment.

As for joints etc, in my 40's I had to have my right hip replaced. I now know that it was because the bugs love eating cartilage, again, that was because I had it for so long before starting treatment that it got to that point.

My knees and other joints are painful but that can't be seen in an X-ray. That can be a side effect of Lyme.

Its probably good to tell your PCP that you see a Lyme specialist because of medication interactions. He should know what you are taking and vice versa.

I wound up in the hospital last year and had to tell them I have Lyme. I was looked at funny by some but they had to live with it. Its better to be safe then sorry.

Feel better
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I had discarded the Ehlers-Danlos Syndrome (EDS) since you said you didn't think it was a problem.

After your post today I revisited some sites and found that EDS is commonly associated with pain. A friend has EDS but almost no pain, so I just figured o.k.---- pain doesn't = EDS. I was wrong, oh so wrong! Just goes to show that there's no 'always' in our health.

Since EDS affects the collagen in the body and since Lyme also can lodge in the collagen/connective tissue of our bodies-----

I don't want to jump to any conclusions about your problems, Lyme or other, but if it were me I'd certainly get this looked into more.

"Chronic pain from EDS may be constant yet changeable throughout the day."
A chart at this pdf
http://www.inthefaceofpain.com/content/uploads/2011/12/factsheet_EDS.pdf

..... shows that knees account for 89% of the location of pain from EDS.

Since you belong to Kaiser you can't mention Lyme to your doctor but I'm pretty sure that EDS is a safe subject with them.

I hope you'll at least find out if EDS is a problem in your case. One thing to be crossed off your 'concern' list maybe.
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Thank you

I am sorry about your vision and hip. :(
Lyme is really horrible.

It's assuring that your friend's vision got better. I hope mine will too. It seems even worse today for some reason.
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Thank you for the suggestion.

I looked into EDS again and it is possible.

I never had any problems with joints before, but I am flexible in the many ways used to diagnose Ehlers Danlos.

I will talk about this with my doctor.
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I don't know whether to say "I hope it's EDS" or not!! :( Sorta like six of one, half dozen of another! But getting an answer, in my opinion, is always better than having a mystery.
Let us know, about EDS and Lyme.

One more question----- could you tell me if you're seeing a Kaiser doctor for your Lyme disease?
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I'm back from the doctor. She didn't think I had EDS but she didn't see how bad my joints sound!

It's pretty weird and getting worse.

The doctor I'm seeing for Lyme disease isn't from Kaiser.  I had to go somewhere else for it.

My primary care doctor that I saw today is at Kaiser though.
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Thanks.
So the EDS seems to be a dead end as far as Kaiser goes. I hope that the Kaiser doc read the comment from the PT who said you were 'hypermobile', assuming the PT was a Kaiser PT.

Too bad you have to go outside Kaiser for your llmd, but that's the nature of Kaiser and I'm glad you took the initiative.

Telling your Kaiser PCP what medications you're taking is necessary, of course. And I guess that, if asked, you will have to tell your PCP why you're receiving those meds. I don't have a clue if that will hurt your relationship with your Kaiser PCP or not but there are some Kaiser docs who, although they can't treat for Lyme (or risk censure by Kaiser admin), DO know enough to be sympathetic towards their Lyme patients. I hope you have one of those.

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I have had all of the same symptoms as you.  The sound sensitivity and muscle twitching stand out the most at this time.  And an occasional snapping or wave sensation in my brain.  I did briefly have all over joint popping.  I am still in the diagnostic process.  I hope all is better for you.  Please let me know if you have any suggestions for my own course of diagnosis and treatment.
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