posted
I'm hoping that someone here can help me. I'm 18, female, and scared out of my mind.
In the beginning of January, I started having a tingling sensation in my left arm, right leg, and face. I also noticed times when it felt like I had been startled, but only on the inside (possible heart or nerve problem). I would feel dizzy for a split second and for absolutely no apparent reason. My eye was also twitching like crazy.
After a few weeks, I decided it was time to see the Dr. I went to my general dr and he scared me half to death. In the middle of my exam, he left. He returned a few moments later only to tell me that I probably had MS. He refused to answer any questions because he already had the neuro on the phone. So, I set up an appt. to see the neuro.
Two days later, the neuro told me that it could be a lot of things. That eased my worry about MS, but not about what it could be. I had 8 viles of blood drawn for testing.
While I waited the two weeks for the blood results, things got worse. I had a headache everyday, almost all day. My muscles (or bones, I suppose) started to ache. And occasionally I would have piercing pain. Arms, legs, hands, feet, everywhere - even in my ribs. I also had occasional chest pain.
The blood tests all came back normal, but my neuro told me to redo the lyme test. So, now I'm waiting for that to come back again.
I am very tired and I woke up this morning and my neck hurts badly.
I don't know what to think or do. I don't particularly want Lyme, but it seems better than some of the alternatives, not to mention at least then I would know what it was.
Does this sound like lyme?? What other tests should I have done??
Posts: 50 | From Sugar Hill, Ga, USA | Registered: Feb 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Yes it sounds like lyme and ms is usually misdiagnosed and its really lyme.
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD inSeeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
posted
Don't panic. The fact your blood test came back showing nothing helps eliminate some things worse than Lyme. Never the less Lyme can make you real sick so don't underestimate it. Your symtoms could be Lyme and a possible coinfection with other crap the ticks carry.You really need to see a doctor who knows Lyme, most don't. That's the best advice I can give you. There is plently of support and help available at this site. Best wishes.
Posts: 228 | From Wassaic NY. USA | Registered: Aug 2002
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posted
I just came across this new web site of good info from Natl. Institute of Health's medline library....covering many other dx illnesses...FMS, CFS, IBS, etc. and was posted on www.lymenet.org.
Be sure to print off Treepatrol & Tincup's combination NEWBIE LINKS, check off as you read as there are months of reading there!
Betty G., Iowa
PS - was your western blot igm & igg done at IGENEX OR MD LABS since they are the only diagnostic labs testing 16 protein bands for ALL STRAINS of lyme; rest do NOT.
Posts: 1 | From US | Registered: Aug 2015
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posted
Hey threefries we are sort of neighbors. I live in the Dacula area. My symptoms were similar to yours I went from doctor to doctor. Some said viral meningitis others said stress, when I brought up Lyme, no Lyme is not in Georgia and you would have a rash and it starts with arthritis. I finally talked my neuro into giving me a Lyme test it was an ELISA test. The test came back negative found a LLMD and got all of the tests from Igenex they were all positive (LUAT, PCR, both Western Blots). As far as the blood work is concerned all of my tests were within the normal range and still are. I wouldn't put much faith in that ELISA test I read that the test is 20-30% accurate. I would find a LLMD too, because not only do the docs not think Lyme is not in Georgia they will not treat it properly.
I feel that a car accident and bad sunburn triggered the Lyme with a vengence, but I think I got it when I lived in Charleston, SC a bunch of years ago. Remember pulling a tick off my leg and since then have had minor Lyme symptoms.
[This message has been edited by duke77 (edited 25 February 2005).]
[This message has been edited by duke77 (edited 25 February 2005).]
Posts: 649 | From United States | Registered: Dec 2003
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posted
12 years ago when I started getting symptoms, I was told I had MS as well...I was only 22 and thought my world would collapse...after an MRI and spinal it was ruled out....It took me anohter 4 years to get my Lyme diagnoses..even though from the very beginning I had positve Lyme tests that I was told " not to worry about"
I am glad they are testing you for it...dont let any Dr tell you a positive even a "little" positive is not Lyme....
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I'm sorry for what you are going through, but happy you have found us. Whether it turns out to be Lyme, or something else, it is not an easy journey. Particularly when we are out there searching to make sense of our symptoms.
People have mentioned needing to find a good doctor. An LLMD is a term we use to describe a lyme literate M.D. Many doctors, even those who claim to treat Lyme, don't agressively treat the Lyme and coinfections. There is no magic list, but if you post in the searching for doctor forum, someone should respond.
Here are some hints and things to remember:
1. No matter what people say, you are sick and your symptoms are real. You are likely to meet some bad doctors and some unsympathetic people who don't "understand." Just remember, they are wrong.
2. Lyme tests are often false-negatives. I was bitten by a tick at 12. I was tested multiple times from age 14-17, without a positive result. I was then tested about 8 times 11 years later before I got a positive result.
3. Many people have more than one infection. These are called co-infections, and could also be from a tick, or other types of infections adding to the load on your immune system.
4. Keep reading. Read this board, find other sources, but stay informed about your illness.
5. Find somebody to lean on. I'm 30 and my mom flies in to visit me every 3 months for my visits with my LLMD. It's sounds silly, but it helps to have her support.
6. Reach out to others your age. Someone recently posted looking for teens with Lyme for his daughter. It might help to do a search of posts and connect with him.
7. It's ok to be scared. I sat on a bench in the locker room of my gym near tears the other day because I got so scared by symptoms. That's why it's important to have others to talk to.
8. You are taking the right steps. You are lookig for a diagnosis and you found this website. Keep going.
-Aniek
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Welcome to the club! You are on the right track, and are fortunate to have seen a neuro that recognizes Lyme neuro symptoms.
Do not be surprised if the lab tests for Lyme come back negative. Most Lyme bacteria are elsewhere in your body and can be hard to find in blood, and some of the Lyme tests are almost incapable of a positive reading no matter how much Lyme a person has.
From the personal experience of myself and my wife, your symptoms are not suggestive of Lyme... They are SCREAMING you have Lyme. Be thankful they were bad enough to get your attention! They COULD be from a different cause, but I for one would be very surprised.
You WILL get better with proper medical care. I don't think one can ever completely get rid of it, but you can get feeling good and get your health back to the point it rarely bothers you and you can enjoy life. A good Lyme doctor will teach you to take good care of your body and improve your overall health... which is a good thing for anybody!
We've had incidents of numbness, twitches, and strange neuro stuff coming and going and moving around both before and during treatment. Thankfully they seem to be temporary and gradually diminish with treatment. We have good days and a few bad days, but it gets better and our lives are good! And we are pushing 50... you are younger and stronger, you will get feeling good again.
You have a long journey ahead, but you will make some new friends and have many positive experiences to offsett the bad.
A little story...
We have a young friend a couple of years older than you in a very similar situation right now. Your post caught my attention for that reason as we really feel for her finding herself in this situation as well.
Looking back, she has the bad headaches and stiff neck stuff, but we all assumed other causes. Labs, blood work, CAT scans etc. allways were normal.
One day just on a hunch my wife (a nurse) got a drop of blood from her and looked at it under a microscope... just because. (She DOES stuff like that sometimes.)
The blood smear was just full of protezoan things that are probably Babesia, something similar to Malaria that is often found together with Lyme. We also saw 2 spirochette bacteria (the type that causes Lyme), which are very rare to actually see in blood.
We took pictures and showed them to the physician treating us... she is waiting for her appointment to get properly diagnosed and helped with her rather horrible headaches. (You will find the words "Babesia" and "headaches" used in the same sentence alot, by the way.)
What we saw in the scope was not in any way a diagnosis, just a strong clue that she needed medical help.
Just so you know, we don't normally go around getting drops of blood from our friends to look at, and that is normally a very inefficient way to check for Lyme. She just did that, and it turned out to have been a very good hunch in this instance.
I mentioned this just so you know that "normal" labs do not always mean nothing is wrong. Just that the things they checked for were normal. And they almost never actually LOOK at your blood anymore because machines do the tests.
You are on the right track.
Anyway... Welcome, and let us all help you through this anyway we can.
[This message has been edited by James H (edited 25 February 2005).]
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Sure does sound like lyme.
Go over to "Seeking a Doctor" and post your area of the country and make sure your e-mail is workable and available in your profile. Someone will be able to steer you towards an LLMD in your area.
We e-mail LLMD's contact info and do not post it publicly for their own confidentiality.
It sounds as if you were recently infected, so you may have a shorter course of treatment compared to most. Time is of the essence ! Treatment delayed, is treatment prolonged, so get to an LLMD !
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
thank you so much for all the information. I can't thank you all enough.
I think my neuro is a good doc, he was the one who pushed for the second lyme test. However, I don't know if that means he would know what to treat it with if I do have it.
Is it likely I was bitten recently or a while ago? I mean, I thought neuro symptoms would be last - but that was what I noticed first. Of course, noticed being the key word here. I'm not very good at noticing if my body is telling me something.
What are treatment options? I know they use antibiotics, but I read something about intravenous antibiotics. That sounds scary.
does anyone know of any teens - especially ones going off to college in the fall - that I could talk to. I can always make a new post for that.
How can I help my parents believe me? They think I'm turning into a hypochondriac. They can't figure out why I'm so concerned. But I know that there is something wrong with me. This feeling is not normal - nor is it stress.
Thanks again for all your help and feedback.
Posts: 50 | From Sugar Hill, Ga, USA | Registered: Feb 2005
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I meant to ask if you had supportive family to help you. They are probably in denial. Lyme patients tend too look totally healthy even when they feel lousy, that doesn't help much. Give them some time.
Your regular Dr. and your Neuro recognized immediately something was wrong and you need some help.
In the mean time, many of us here are parental types with children or grown children, and are happy to offer our support. We have compassion for others dealing with this. Feel free to lean on us as hard and as long as you need to.
I know of at least one friend here with a son being treated for Lyme and currently in college. If you would like I will put you in touch with her, so you can talk to him about how he deals with this and college at the same time. (Use the email link.)
Our young friend that I mentioned might be good to talk with too, once she has had time to digest all of this.
We are all going to the same Dr., and I know the basic strategy to succeed with college or in my case difficult technical work is a GENTLE treatment approach. This involves antibiotics, but not in brutal doses. Just enough to slowly pound down the disease but not so much to be hard on our health.
She (the physician) also gives medication to help with the symptoms such as fatigue and brain fog so we can feel better and function. There are alot of supportive things that can be done that improve your health and make you feel better right away.
This is so important for some of us, because I for one could not do my work... writing software... with the huge doses of antibiotics, IV or otherwise that some are on. I would be living in a cardboard box under an overpass within a year if I tried that route!
Some people NEED the really heavy duty stuff, and others have situations where the downtime from being whacked with massive med doses is acceptable.
We all need treatment approaches tailored to our individual needs. Different Dr's take different approaches. I hope you find a good one where you are. Ours, incidentally does not even OFFER the IV meds, though she will prescribe intramuscular injections sometimes when needed. Personally I do not ever want to go on IV, so I am happy with that.
I know how it is with your parents. The symptoms seem a little strange and you don't LOOK sick. It is a very tangible illness just like any infection with a very real infective organism that can be seen under a miscroscope. Have you ever seen one? They look like little snakes that work their way through your cells, munching away as they go. (If your email link works I will send you a picture of one.)
Lyme is a very real infection like strep throat or other bacterial infections, and like them it needs treatment in order for you to get better. They'll come to grips with it, it is just a little strange, and denial is a common first reaction.
Oh, the neuro symptoms can show up pretty fast. I had a rash I *thought* was a strange "spider bite"... It was facial numbness that got my attention and led me to a correct diagnosis.
Alot of people NEVER get the rash and have no recollection of a tick bite, by the way.
[This message has been edited by James H (edited 25 February 2005).]
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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I am not a teen anymore, but I am not that far away either, I am 22 years old and started having similar symptoms that you are experiencing when I was your age. I am still working on school but have had a real rough time the past few years as a result of being sick and a few other side issues.
That is so terrible about your parents. Over the past year, I have really gone downhill and my parents have been amazing, I really hope you are able to convince them that there really is something wrong, even if you have a hard time figuring out what that is. It is good that you trust your doctor, I don't trust hardly any of them. I have bassically been ignored by my insurance because I am young, and appear to the naked eye to be pretty healthy, being young is an advantage because our bodies are often stronger, but it can be a disadvantage as well, because people are less likely to take you seriously when you are not showing visible signs of illness, esp. ppl in the medical community. You are welcome to E-mail me if you have any other questions that I might be able to help you with. my E-mail address is [email protected]. Good luck, and keep posting updates to let everyone know how things are going.
Posts: 99 | From California | Registered: Feb 2005
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posted
One more thing, you may already know this, but your doc probably ordered a ELISA test and they are practically worthless unless it comes back positive which is rare even for people that most definately do have lyme.
You should research IGeneX labs, they are of course not 100% accurate by any means, but they are a respected lab with a lot of good information. Also The Bowen Lab has developed a fairly new test that is not proven to be accurate, but many people have placed a lot of faith in their results. As far as I know, most of the time with most labs you have to worry about false negatives, but with bowen there is some skepticism about some false positive results. Its hard to know what the right thing to do is, and things can get very costly. Its wierd reading your symptoms because mine were almost identical. Good luck again and try to not lose hope.
Posts: 99 | From California | Registered: Feb 2005
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quote:Originally posted by threefries: I think my neuro is a good doc, he was the one who pushed for the second lyme test. However, I don't know if that means he would know what to treat it with if I do have it.
Is it likely I was bitten recently or a while ago?
Sounds like a good neuro. Believe me, there aren't too many good ones around when it comes to recognizing Lyme.
I would seriously doubt that he would know how to successfully treat Lyme and its co-infections. That's one reason you need to find an LLMD. Not only for the Lyme, but to make sure you don't have any of the co-infections, which often require different meds.
It is possible that you've had this awhile. Only time will tell. If it's a recent infection, you will get well pretty quickly.
SO! Good luck! Hang with us, and let us help you through this!
Welcome!
------------------ oops! Lymetutu
[This message has been edited by Lymetoo (edited 25 February 2005).]
Sorry you've been having such a rough time. Gosh, being l8 and starting college next fall with all this going on has got to be really tough.
Once you get a diagnosis, you can start treatment & get headed in the right direction.
Everyone has given you wonderful advice.
I always try to reassure folks that Lyme Disease is a clinical diagnosis based on symptoms. The IgM & IgG Western blot test for Lyme is used merely to support the physician's diagnosis.
That way you don't have to be worried sick about getting a positive test.
Some on Lymenet have never had a positive Lyme Western Blot, but still have Lyme Disease. In some cases, the sickest folks are the ones who have negative tests.
Lyme Literate Medical Doctors (LLMD) don't rely on the ELISA test. They do prefer to run the Western Blot test from a specialty lab like Igenex.
Everybody's Lyme testing and treatment depends on the both the LLMD's treatment protocol and the special needs of the patient.
I don't remember a tick bite, but I still have neuro lyme. And arthritis is not a problem for me so when I put on make-up, fix my hair-------I don't look sick at all.
Yep, it does drive me crazy when folks don't understand how I've struggled to be functional-------like when they say, "Well you sure don't look sick!" If they only knew.
Anyway, I was tested at Igenex Lab and diagnosed with LD in 2003 on my first visit to the LLMD. It was only later that we got my positive Igenex test results back.
I went 13+ years without a diagnosis, but I have improved immensely.
My 21 year-old son, who is a junior in college, was diagnosed with LD just last year and started treatment. He's had several ticks on him, but his symptoms came on more slowly-----kind of like mine did.
He's doing quite well away at school. I only know what he tells me, but from what I can figure out, he makes sure he gets enough sleep.
If he has trouble taking an antibiotic, then he goes back to the LLMD and explains the situation.
They sit down & figure out a way to find an antibiotic that he can tolerate and still be able to study.
He also takes Armour Thyroid which helps him get up in the morning a bit easier. He had really cold hands & feet, but says he can really tell the difference when he's on it.
We do try to mail him supplements or take them to him when we visit. It's one less thing for him to worry about.
Hate to overload you with information, but wanted to point out that Dr. B's Treatment Guidelines are in Treepatrol's "NEWBIE LINKS."
That's kind of our handbook for LD. It has a symptom list and antibiotics listed to give you some idea of what to expect. Everyone likes to print this out for easy reference.
Try to remember that getting well is a process. This booklet may help some. "Lyme Disease - The Basics" is handed out from our LLMD to new patients.
You can print your own version right off the internet. Here's the link:
This site also has a Teen Links that you can click on & check out.
In fact, the book mentioned above appears right under that Teen Link icon. Just click on that tan-colored icon & you can print off the booklet.
The last pages list important Lyme websites and also a book list about Lyme Disease. Really helpful stuff.
If you have any trouble, just let us know.
My other favorite handout is a 30+ page "symptom chart" which was handed out at our Support Group Meeting. It shows how LD can affect every body organ.
It's in pdf file form, so it's easiest to print out & have on hand for easy reference.
(The first few pages are narrative, but keep looking because the chart part of the article is what you're looking for.)
The chart also lists journal citations. It's a goldmine of information.
Here's the link below;
Just click on the link; you'll need to then scroll down the page to the green indicator next to the article entitled "Symptoms" and click again.
Well, most of us here had to find an LLMD to get proper treatment. My husband & I travel 6 hours round trip to see our LLMD; and some drive a lot farther than we do.
Hope you can find just the right doctor and just the right treatment.
Keep reading & asking questions.
And by all means, keep us POSTED!
Take Care, Jan
[This message has been edited by Recipegirl05 (edited 25 February 2005).]
posted
hello....even though i am new to this site i know what you are feeling and going through....when you had your lyme test eith who and how did they prepare you for the test? My husband was dz with als....and had a negative lyme test....until we found out about the need for a course of antibiotcs before a lyme test and the best lab to use is igenex in ca./......you can find their web site and they will send you a kit with instructions....you need to be on antibiotcs 5 days prior to the test....the meds start to kill the lyme bacteria off if you do have it and bring i into your blood stream so it can be detected by the lab...my husbands first test was negative...his 2nd after 5 days of antibiotcs was very highly positive and when i decided to get tested i was positive as well..........look up igenex web site and ask for a proper test from them...sounds to me like you do have th esymtpoms...best o fluck...laurie from ohio
Posts: 17 | Registered: Feb 2005
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