"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 .
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.
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:
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.
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.
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:
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.
[continued in next message]
[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 --