Lyme disease?

Hi, for the past year i have had neck pain associated with a headache and many other symptoms.  It first started with a headache and one swollen lymph node on the back of my head, then it slowly progressed to neck pain and upper back pain pain in the muscles.  this was accompanied by swollen lymph nodes in my neck and on the back of my head. I also have fatigue. since then I had an mri and blood tests. to which all came back negative. supposedly there was nothing wrong with me and I was diagnosed with anxiety.  well since then I have had a range of symptoms coming and going like random pains such as abdominal pain(doesn't happen often), chest pain, rib aching, etc.. cant even remember all of them. this was also accompanied by compulsive neck cracking and joint discomfort. i also developed a mild sore throat that comes and goes.  I for some reason take very hot showers very often because it makes me feel better.  also under my fingernails and toenails, there is a red band near the front of the nail where it is clipped but not at the very edge.  my hand shakes when i try to do something requiring precision. when i go to the doctor my heartrate tends to vary from high to normal when tested. and recently i have had mucus in my stool and just today i had bright red blood on my stool. oh ya and a suspicious small mole appeared on my arm that is assymetrical but small. i just dont know what to believe anymore, could it be lyme disease? this has been going on for a year or more.

[JackieCalifornia]

Welcome to MedHelp Lyme --

Sorry to hear what you are going through -- you are, in my not-medically-trained opinion, having symptoms that could be associated with Lyme disease.  Many MDs are not familiar with the broad range of symptoms that may appear in a Lyme infection and often cycle seasonally and also every few weeks (it's different in everyone).  That is, I think, part of what makes it hard for docs to recognize Lyme when they see it.  Also, Lyme often comes with companion infections ('co-infections') that have their own array of symptoms to complicate the presentation and confuse the docs.

I would suggest that you find a Lyme specialist for a work up.  It's what I would do in your situation.  The bad news is:  Lyme is all over Connecticut; the good news is, there are Lyme specialists nearby.  You will see the term "LLMD" used by patients to refer to MDs who specialize in Lyme and its coinfections, but it's not a formal title or one that the docs themselves use ... it's patient shorthand for 'Lyme Literate MD.'

I would suggest that you locate an LLMD (who can be a GP, an internist, an immunologist, or any kind of MD, but has to be one who has an open mind and an interest in Lyme+).  I understand they can be hard to locate in CT proper, but they are findable.  (Oddly enough, infectious disease docs and rheumatologists are often the loudest deniers of Lyme, although their fields of study should make them the docs best prepared to treat Lyme.  It's all based in 'power politics' within the medical community.)

Here is a website with an explanation of how find an LLMD:

www [dot] chronic lyme disease [dot] com / llmd - referrals

You could also look at the website www [dot] lyme [dot] org, which is based in Tolland CT and may be able to suggest a nearby LLMD.  Looks like your general area.

[[Take out all the spaces above and replace the [dot] indicators with a period, and you're good to go.]]  

Columbia U has a renowned Lyme *research* center, but I don't know if they take patients for *treatment* as well.  They have a website and you might give them a call to inquire.

Also be aware that different states and their medical societies have different views of Lyme as being serious vs trivial, how long to treat, whether to test for coinfections, etc., so if you run into a brick wall in CT, NY may be more patient-friendly.

I would recommend strongly that you involve your family in figuring out how to approach this situation and find a doc.  If you want to read more about Lyme+, the ILADS [dot] org website is the main group of LLMDs in the US.  

You will also see some websites that are full of conspiracy theories about the government having created Lyme in a lab and it got away from them, etc., but to my thinking, that kind of theorizing doesn't help any of us get well, and as you already know, being sick is enough of a chore.  

NonLLMDs scoff at LLMDs and can be very dismissive of the idea that Lyme is a serious, long-lasting ailment if not treated properly.  It makes finding diagnosis and treatment difficult, but it is well worth doing.

Please let us know if you have any questions or we can help further.  I hope you don't have Lyme, but if you do, getting it (and its coinfections, if any) treated is important; they don't go away by themselves.  

Best wishes to you -- let us know how you do, okay?

[drsdonthelp]

Jackie said it all!! She's awesome,,, I had pretty much all of the same symptoms as you, and I finally got a clinical dx of Lyme, babesia and bartonella. I had Cat Scratch Disease as a teenager and now I understand how all of my symptoms started from that time on...... Cat Scratch Disease ( which is Bartonella) is a co-infection of Lyme.. I would've never thought about it had I not come here!!!

My LLMD is in Mt. Kisco, NY... He is pretty great, and very, very knowledgable about this. Take the advice and get a LLMD (ASAP), LOL
Don't yu love all the abbreviations!! LOL

Take Care, and Good Luck!!
Pam