I was tentatively diagnosed with CFS/CFIDS, or simply chronic fatigue syndrome, this past April by my rheumatologist. I'm 18 and just started college this semester. Recently someone suggested my symptoms may point to Lyme Disease, which is not impossible considering I live in NJ, right by the woods, and we've found numerous ticks on my dog (and he had Lyme Disease about 8 years ago).

My symptoms started to affect me noticably about 3-4 years ago. Since then it has progressed to the point where it significally interferes in my daily life.

I experience problems with my joints, my eyesight, headaches/neurological issues, swollen lymph nodes, dizziness, interrupted sleep/insomnia, weakness, fatigue, shakiness, palpitations, and the list goes on.

I've looked through websites and books about both CFS and Lyme, done the checklists (finding that my symptoms overlap quite a bit, and of a list of roughly 72 generalized/possible Lyme symptoms, I experience 53 on a regular basis), been to my rheumatologist regularly. He said that he hadn't tested me for Lyme, so I plan to ask at the end of the month at my next appointment; though I have heard from multiple sources that Lyme tests aren't particularly reliable.

Does anyone here have experience with misdiagnosis, CFS/CFIDS, rheumatologists, etc..? What specific tests should I ask for?

Also...if my condition is Lyme, what type of prognosis should I expect considering my age and the timespan over which I've been ill?

Any anecdotes, advice, links/information would be GREATLY appreciated.

Thanks so much!

Oh goodness, it does sound like lymes to me. I have all the symptoms youve listed and more. Most all of us on here has been misdiagnose at one point or another. For the first 3 years Dr.s just told me it was all in my head. That I needed good rest and food, n exersize. Some docs are just ducks lol... I would Definately test for lyme. They say Igenex lab in Cal. is the most reliable lab for the Western Blot(ask for this test) and that Elisa are often wrong. If you do have lyme you will need to find an LLMD (lyme litterate medical doctor) I would post now in looking for a doctor section of lymenet for an LLMD now if I were you. They can test you for lyme also and would know the best tests to do at which labs. If treated by an LLMD your prognosis could be very good. An LLMD will usually continue working with you how ever long it take to get you better. Since you have been sick for 3 years or more the length of antibiotic treatment will likely take months or years, and any regular doc who tells you a few weeks of antibiotics will cure later stage lyme is an uneducated duck. Good luck with this. Keep us posted please.

To David: thank you for sharing your experience.
As for my parents, my father lives elsewhere and is remarried, but I keep him up to date on important things. My mother didn't believe me at first when I was a younger teen adjusting to highschool, but after she attended some appointments with me to specialists who treated me poorly, she began to help me find the right kind of specialist. In particular, I went to a pulmonologist who told me I must be out of shape because there is no reason for someone as fit-looking as me could be ill (what BS!). I go to a rheumatologist now who listens to me and my mother encourages me to tell him all my symptoms, try treatment, and go regularly for followup.

To BarelyBreathin: As I just mentioned, I've had a lot of bad doctors too. The rheum I go to now specializes in Fibromyalgia/CFS and Lyme Disease, so hopefully he'll have some insight when I ask about the latter. Thanks for the advice, I'll write down the tests and see what he says, if he won't test me I'll find someone else...even if I don't have Lyme, it sounds worth ruling out.

Thanks again!

I just wanted to say hello and wellcome you. I only found this site a few days ago and have already learned sooooooooo much.

I am 21 and have been sick for at least ten years. I just wanted to say hi because it is nice to know that I am not the only one out there this young that feels this bad.

By that I mean that I'm sorry your sick but glad to have someone my own age who know what it's like to feel crummy all the time.

Anyway, I am just looking into getting tested and finding a good doctor so we're in right about the same stage.

Keep us posted.

quote:

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Originally posted by algr:
I really wonder about this rheumy - if he says he specializes in Lyme, he should have known better and order you the Lyme and co infection tests from Igenix.

"To BarelyBreathin: As I just mentioned, I've had a lot of bad doctors too. The rheum I go to now specializes in Fibromyalgia/CFS and Lyme Disease, so hopefully he'll have some insight when I ask about the latter. Thanks for the advice, I'll write down the tests and see what he says, if he won't test me I'll find someone else...even if I don't have Lyme, it sounds worth ruling out."

Thanks again!

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WildCondor: wow, I actually came across your story a few weeks ago after it was first suggested to me to look into Lyme. It was one of the reasons I decided to continue researching this disease. Thank you for creating a site to share that information, it definitely made me question my diagnosis in a proactive way!

I was also diagnosed with CFS when I was 21 - only last year (at 35) did I find out that my "CFS" was in fact late stage Lyme Disease.

Seek the help of an ILADS member Lyme specialist - go to Seeking a doctor on this message board. Take it from there.

I think you're on the right track and as you're young and haven't been sick that long you have a much greater chance of full recovery than some of us.

It's hard since I don't really know what to tell my teachers. "I have some illness that could be CFS or Lyme or maybe I'm just crazy, but I can't come to your classes because I can't get out of bed. So please excuse me from class."

I don't think that would go over too well. I do have a good relationship with most of my profs as I go to a small school and all of my classes this semester are for my major (I am a senior). Still I fear having anyone else think that I am faking it or it's all in my head or some other such rubbish.

So for the most part, I do my best to go to class when I can, read my textbooks (I'm lucky and thankful that usu. reading is not problematic for me), and go over the notes/talk to others in my classes. Other than that I don't usually tell my profs. why I miss class. I'd rather have them think I'm flaky or lazy than crazy or psychosomatic. Just me.

I barely made it through last semester, but I survived somehow. I am just hoping to figure this out and make it through this and next semester and then I'll be done with school. What then I don't know. Maybe some hardcore abx therapy if it really is LD.

Do not know if anyone has given to you these most important links to read, study, and bookmark for future reference.

http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

I hope this helps.

Rosemary

PS you need to see a Lyme Literate Medical Doctor.

Rheumatologists are useless as far as treating Lyme is concerned...saw two of the best in the whole state of Florida before finally getting a Lyme dx....they were useless and only wanted to label me with something I did not have.

Lyme Literate Medical doctors are just that, they usually ONLY treat Lyme disease and are not doctors that say that they do.

Welcome to Lymenet. Please preserve your precious future. We want you to have the best factual answers about Lyme.

You deserve to know if you have Lyme or not.

Please heed the others' advice. They know what they're talking about.

Even if you get a negative IGENEX Western Blot according to your present Doctor's interpretation, you could still have a raging infection going on in your body.

A Lyme diagnosis is based on symptoms.

That western blot is just to support the diagnosis. The LLMD uses that as a secondary tool.

I lost a year of treatment because my IGENEX test was negative. I thought I didn't have Lyme Diseaae.

When I found an LLMD, he gave me l4 days of Zithromax 500 mg prior to IGENEX testing to elcit a positive response.

This 2nd test returned positive & I got treatment because I found an LLM.

Each LLMD has their own protocol. Some give antibiotics prior to testing & some don't.

The important thing is that an LLMD will understand the implications of a negative test.

Some of the sickest folks test negative.

We care what happens to you & don't want anyone to sidetrack you into thinking you don't need an IGENEX test or an LLMD.

The clock is always ticking on a case of untreated Lyme disease.

The faster you get ADEQUATE treatment, the faster you'll improve.

Keep us posted.
Best wishes,
Jan

P.S. This chart is a symptom list with journal citations. You will be amazed when you read it.

It was handed out at our support group meeting. It's in pdf file form so it's easiest to print out & have on hand.

To access: Click on link below. You'll need to scroll down the page to SYMPTOMS......, Lyme Disease is a multi-systemic infection, affecting multiple parts of the body and causing extensive symptoms...... & click.

Lyme Disease Symptoms & Characteristics http://www.lymeinfo.net/lymefiles.html

This is a must read, comprehensive site on Lyme. http://www.wildcondor.com/lymelinks.html

Edited to add link.

The Rheumatologist may be nice, but he does not specialize in Lyme disease.
He is not an LLMD, or he would have checked out Tick-Borne Diseases (TBDs) a long time ago. Your symptoms are typical of Lyme and also co-infections.

Please don't waste any more time or money.
Go to Seeking a Dr & find a really, truly LLMD. You need to be evaluated - ASAP - by a Lyme expert.

The earlier the treatment, the better the results - but only if treatment is adequate.

Want to warn you -
Since it's possible you have Lyme, you should NOT take steroids.
They suppress the immune system and give the bacteria a real advantage. If you're on steroids now, you need to check with your dr about how to properly get off them.

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A while back when Asthma was what the doctors were treating, I was given a corticosteroid inhaler, which main me REALLY sick while I was on it. I was shaking 24/7, felt feverish. I had people at work telling me to go home. I finally looked as sick as I felt.

Could this be why?

You have come to a good place to find out if your problems are from Lyme and, if they are, the best ways to deal with treatment issues!

Please refer to this site's "On-line Library" to further acquaint yourself with excellent info.

There are other members who regularly post "Welcome Packages" of abstracts and reports to newcomers; expect this shortly. (Sorry, I'm too technically challenged to forward all that superb material)

Also, go to the "Looking for a Doctor" section of this board and post your pertinent stats: location, symptoms, current diagnoses. People in your area can help you find the right doctor(s).

So, to re-cap:

1)It is essential that you go to a LLMD. (See: Looking for a Doctor)

2) It is essential that you get all the appropriate tests through the best labs.
(ie; I-Genex, etc)

3) As stated in previous posts, whether you are positive or negative on the tests-LYME DISEASE IS A CLINICAL DIAGNOSIS, not wholly dependant on lab-work!

4) A good LLMD will know how best to approach/interpret your test results and treat your specific profile of symptoms.

5) Other people on this board will have a similar symptoms or treatments. They can give lots of anecdotal info about their journeys and what has been helpful to them.

Good Luck and Welcome!!!

love,
andie

About the steroid inhaler -
I don't have asthma, so I haven't had experience with these inhalers.

If I had to guess, I'd say there is a possibility that the steroids in the inhaler could have a negative effect on Lyme symptoms.
Your reaction would probably depend on the strength of the dose in the inhaler & how often you used it.

The reason I mentioned steroids is that they are sometimes prescribed for arthritis.
Those who have taken steroids will find that it can complicate treatment of Lyme.

Recommend-
At the top of your first post, click the little word "search" right below "post response or new topic". Type in "Steroids" for the subject, Med Ques, Any time & it will pull up lots of previous discussions on the topic of steroids. To narrow the search, put "Steroid nasal sprays".

Still recommend-
Ask the people here on LymeNet to help you find a LLMD. If not, you will be wasting valuable time and money seeing a rheumatologist who has not recognized your symptoms as possible Tick-Born Diseases (TBDs).
Therefore I'm assuming that he would not be the best one to run any tests for Lyme or co-infections, wouldn't have the info needed to interpret test results or prescribe adequate treatment.

That said.....I'll make a suggestion.

After the people here help you with names of a LLMD & you know who you want to see, then discuss it with your rheumatologist.
That you want an evaluation by a Lyme specialist recommended by friends who have Lyme (LLMD recommended by your friends on LymeNet), & then maybe your local dr could work with the LLMD in your treatment. If he's as nice as you say, he should be agreeable to this plan.

I don't mean to sound curt, but "nice" has not cured you yet. The longer you wait to see the right dr, the more complicated your case will become.