LymeNet Flash: so here is my list of symptoms

This is topic so here is my list of symptoms in forum General Support at LymeNet Flash.

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Posted by marievorburger (Member # 6409) on :

I lived on the edge of Seneca Creek State park in suburban MD this summer. I went hiking in grassy, wet woods. I felt a bit. 7 days later I had a small small red spot (2cm about) with a clear center. It lasted for 10 days. I showed it to my doctor. He offered to give me the doxy but said if the tick was not on for 24 hours I could not have Lyme. I did not take the med caus I had not SEEN the tick on me for 24 hours. 3 weeks later I had a test done because I began feeeling tired with headaches. Negative of course.
By August, I was exhausted and having weird joint pain. My knees were terrible. I had a swollen lymph node in random parts of my throat every 10 days. headaches. chills, feeling always feverish. I stoppped all my physical activity for 3 weeks. My knees got no better. I saw my doctor (the same one) during this time and said that I suspected lyme disease because of my sore throats, joint pain, and fatigue. He insisted that my patellar tendons were strained and that Lyme disease does not cause swollen lymph nodes. By late August I called him and demanded Doxycycline. He prescribed it. My fatigue went away in a week. My knee pain subsided slowly. Treatment ended late September. In the meantime I have moved to NYC for school. I checked things out in early September with the NYU doctor. He insisted it was in my head and that my knees were a physical problem. In early October I got a sore throat and congestedness. I had hip tendonitis for 10 days. I began having trouble remembering things. Fatigue ensued. headaches, and chills, clamminess, feverish feeling. Mostly a depressed fatigued feeling. and 2 weeks ago my finger joints began hurting. and now sometimes my elbows when I wake up. Weird gentle pain. Nothing debilitating. My knees are ok. I get headaches infrequently. Lowgrade everything. I finally went to NYU emergency. the kindly explained to me that I never had LYme to begin with and even if I had because I had been treated a test would come out negative. From what I had read, even after treatment tests can be positive. Why are they all so dumb. I was crying. the least they could have done is test me or send me to a specialist. Perhaps they just don't have a sense of what suburban MD iis like. None of them seems to have any familiarity at all with the symptoms. when I told them that the joint pain traveled they said it would never manifest in the fingers and it would never travel. AAaaah. Help, I need a specialist to talk to in depth about the sequence of symptoms. I am so sick of being exhausted, depressed, feverish and scared that I have a debilitating disease.

Posted by JRobin on :

Hi!

Sounds like you have already done some good research on your symptoms. In response to your questions:

. "when I told them that the joint pain traveled they said it would never manifest in the fingers and it would never travel. "

Absolutely it does for many of lyme people, myself included. Migratory pains are a key symptom.
-------------------------
Help, I need a specialist to talk to in depth about the sequence of symptoms.

Please check the "Seeking a Doctor" because you will need a special kind of doctor who really knows about lyme in order to do a knowledgeable clinical diagnosis, with appropriate confirmatory testing.

I would not delay based on all you have relayed of your symptoms.

Wishing you a speedy diagnosis,

Posted by JRobin on :

Forgot one thing; this site is having a blip today. In case you cannot get on, another recommendation is to go to this page
http://www.lymenet.org/SupportGroups/UnitedStates/

for local LD support groups to contact for medical support. There is one for NYC, but you are close to NJ, so I would look there, too.

Best of luck,
JR

Posted by AZURE WISH (Member # 804) on :

I am not a dr. If ya got a tick bite then noticed those symptoms chances are ya got lyme. They are all possible symptoms of lyme.

I know that there is a llmd in ny but i dont know his info hopefully someone who is knowledgeable about where the llmds are located will come along shortly.

sorry about the er experience but ive never ran into anyone there who understood lyme at all (once a nurse was semi knowledgeable cuz a family member had it)

I cant tell ya how many times they say you have been treated for more than four weeks.... you know longer have lyme... antibotics dont work after 4 weeks....you now have fibromyalgia (which is BS)

of course then i say i get sooooooooooo much worse a couple days off abx and better on them ... explain that.... of course they cant.... eventually they stop arguing with me and treat me for whatever I actually went to the er for ...

when i was admitted one dumb*** duck ran a lyme test on me without telling me... and when it came back neg a few hour later... he smuggly walked into the room and said i dont have lyme... then i went thru the whole speil and added that he couldnt have used a reliable test cuz it came back to fast ... and i started asking him about testing type blah blah blah... he shut up but then... prescribed the lowest amount amd weakest type of pain med he could and told me to take it every 12 hours... when it wears off in 4 hrs... i was wondering why i was dying....

as you can see hospitals are not lyme patient friendly at least in my experience.

_____anyway

lyme is much easier to treat in the beggining so as soon as u get a lyme literate drs. name make an appointment.

most of us have experience the "its all in ur head" tactic so ur not alone.... when drs arent definite what is wrong with u thats what they say... either that or "its stress"

sorry my reply is so long just wanted you to know most of us have experienced the same frustration with hospitals and drs .

Best wishes

Posted by lookin4answers (Member # 4974) on :

Welcome to Lymenet!!

Yep, sounds like it could be Lyme. Hope you get the answers you are looking for!

Posted by cbb (Member # 788) on :

Welcome to LymeNet.
So sorry you're having so much to deal with.
I highly recommend you see a Lyme Literate Med Dr (LLMD) for an evaluation - ASAP.
The earlier the treatment, the better the results, but ONLY IF treatment is adequate!!

A couple comments -

1) Tick attachment time: Studies have shown that if ticks have the spirochetes in their salivary glands when they bite, Lyme can be transmitted immediately. There is no safe period.

2) When infected with the Lyme bacteria, it takes the body about 4 weeks to produce enough antibodies to have a positive test result.
Too early & it's negative.

3) There is NO test that should be used to "rule-out" Lyme disease.
Lyme is a "clinical diagnosis" - based on symptoms, tick bite, endemic area for Lyme (MD is), response to treatment, etc.

4) On the ILADS website (International Lyme & Associated Diseases Society), "Basic Info", #10 begins: There has never...been one study that proves...that 30 days of antibiotic treatment cures LD.
# 5-8: info on testing www.ilads.org/basic2.html
Print a copy. It's short.

5) Lyme Arthritis in my finger joints is about 75% of my joint problems.

6) Your symptoms could be Lyme and/or co-infections like Babesiosis, Ehrlichiosis, Bartonella, all Tick-Borne Diseases (TBDs).
Read "Co-Infections" http://flash.lymenet.org/ubb/Forum1/HTML/021366.html

Bartonella, Cat Scratch Disease, can cause swollen lympth nodes & other symptoms you're having. Read "Bartonella Alert" http://flash.lymenet.org/ubb/Forum1/HTML/008362.html

Babesia can cause sweats & chills, headaches & other symptoms on your list.

Print "Diag Hints & Treat Guidelines..." 32 pages of excellent info written by one of the best Lyme Literate Med Drs (LLMDs). www.ilads.org/burrascano_1102.html

For excellent links on all aspects of TBDs:
"Links for new LymeNet members" http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Again, welcome to LymeNet.
Feel free to ask as many questions as you need to.

[This message has been edited by cbb (edited 23 October 2004).]

Posted by ShelleyA (Member # 49) on :

Wow...........someone that has the same symptoms I had at the onset! Arthritic knees........then the fingers..........headaches.......fatigue........memory loss.....poor concentration....sweats....insomnia...and so it goes.
Sorry you are going thru all this....do find a real LLMD........
Follow your heart.

Posted by shazdancer (Member # 1436) on :

Hi marie!

My first symptom was a swollen pinky. One ER doc thought it was a broken bone, and put my finger in a cast! When the pain and swelling travelled, I tore off the cast and ordered a Western Blot from my friendly walk-in clinic (thanks to Lymenet for the info), which came back positive for Lyme.

I was a dance major at NYU. I have worked with my body my whole life, as a performer, choreograpgher and teacher. I KNOW when my body is off. Don't let people talk you out of how you feel.

And yeah, there are a lot of doctors out there that have no clue. Keep a journal of your symptoms -- that helps when you're too tired and foggy to remember everything you want to say to your doctor.

Regards,
Shaz

[This message has been edited by shazdancer (edited 24 October 2004).]

Posted by mlkeen (Member # 1260) on :

Morning Marie-

Welcome, it looks like you're joining the party.

Arthritic, numb hands were my first pain symptom. When the pain became transient I knew I had lyme. Apparently, if your use you hands a lot they become a primary site. I believe this may be speculation, and I'm not sure where I read it.

Anyway, long term abx has made my pain minimal.

Good luck finding a doctor.

Mel