posted
Brief background. I was treated for Lyme disease in 1996, 2001, and started having symptoms again in Dec. of 2009. Finally saw in LLMD last week who has started treating me. I have never tested positive, but the doctor did the Igenex test, so I don't have the results yet.
Anyhow, does anyone just have the neurological symptoms, heart symptoms, etc..., but no joint or muscle pain? I just don't have it this time, but was in a lot of pain in 2001.
This may seem like a weird thing to ask, but I just start feeling crazy. I start questioning if this is what is even wrong with me, even though I don't seem to have anything wrong with me according to my family doctor--and I know a lot of you are in the same boat.
Thanks:-)
Posts: 20 | From MN | Registered: Jan 2010
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posted
Yes. I had only neurological pain - in back, arms & legs - for five months. THEN I started to have joint pain. I had a couple of docs say I could not possibly have Lyme because my joints were fine. i also had cardiac symptoms: tachycardia, pounding, etc. My heart is fine now (after 6 months of treatment) but several finger joints are painful and deformed. Go figure.
Posts: 360 | From New York | Registered: Oct 2009
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
The majority of my symptoms are neuro. I have had almost NO joint pain and very little muscle pain.
Throughout treatment on abx long term though, you will experience "rounds" of everything I am guessing. Although joint pain hasn't been a full blown issue, I have had days I couldn't move my joints then it disappears. Consistent are the neuro symptoms though.
You aren't crazy and most family doctor's have no idea all that is involved w/Lyme. That is why so many of us end up chronic, Md's can't catch this in the early or late stages because the mainstream lab tests are horrible and all the different symptoms people have, there are rarely 2 people exactly alike symptom-wise.
Get a good LLMd and get started in treatment if you haven't already.
Here is a link that may help you help your family doctor. Look at #4 brochure, Primary Md info -all these are good and if you print some, maybe it will help educate him a little bit: http://www.ilads.org/lyme_disease/lyme_brochures.html
posted
This is me too. I have very little joint and muscle pain compared to other people I've spoken with. My symptoms are mainly neuroligical; tingling, numbness, weakness, shooting pains.
Posts: 38 | From PA | Registered: Dec 2005
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posted
No pain. We all suffer though. We would trade our symptoms. I have had constant derealization and agitation for 2 plus years. I would trade that away to know what day it is.
You are not crazy. You have lyme and friends.
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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posted
No pain. We all suffer though. We would trade our symptoms. I have had constant derealization and agitation for 2 plus years. I would trade that away to know what day it is.
You are not crazy. You have lyme and friends.
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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posted
A few rare ones go totally numb. No pain, but imagine living like that. The one person I saw in that condition was chaperoned by a parent.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
I was diagnosed with "some sort of Rickettsial infection" way back in 1979 after removing a tick from my abdomen. Since then I've had every test known to man for the pain - which has gotten progressively worse to the point that I take Vicodin and a muscle relaxer just to get to sleep every night. But the pain still wakes me up after 4 - 5 hours.
Right now I'm at my wit's end - literally. My PCP keeps saying "it's fibro. You have to accept the dx and move on." But the years of steroids for allergies and infections have put 100+ lbs. on my small frame. I'm literally miserable.
Help ... please. I'm in SC.
-------------------- Thanks,
aearndt Posts: 3 | From South Carolina | Registered: Apr 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I cycle. I have had very bad pain at times but then it just abruptly disappeared. My neuro complaints are always there. I have lost short term memory, my ability to learn and understand new material is pretty bad and I am generally depressed most of the time. From bartonella I also feel emotionally estranged from the rest of the world, even myself. I hate it. Usually on a monthly basis lyme lets me know it is still active, with a lot of muscle twitching (which can also be bart) but it is not painful.
I read somewhere that when you are bitten close to the head you tend to have more neuro symptoms. I was bitten on the side of my neck.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i cycle also. some days i walk the floor ringing my hands. other days i walk a mile.
mine is mostly in my head!! no really, twitching eyes, hot neck, bad headaches, etc.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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