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king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 10/30/2008 3:05 PM (GMT -6)   
Can you all describe what your pains associated with lyme is like? In example, aching, stabbing, localized, jumps around etc..
 
I got tested for co infections yesterday if these come back neg with the neg WB I suppose I dont have this!
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 10/30/2008 4:25 PM (GMT -6)   
I see that you have had quite a work up with labs, etc. Have you ever had your mercury level checked? I know "stabbing" pain in various parts of the body is symptomatic. Also, the buzzing. Google mercury poisoning or toxicity and you will see what I mean. I have LYme and mercury but if your Lyme is negative, mercury could be your problem. Have alot of amalgam fillings in your teeth? D

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 10/30/2008 4:39 PM (GMT -6)   
That was one of the first things they tested for, no merc in my mouth either
 
I was tested through Igenex and came back post for band 34 and IND on 41 and another one. So I am also getting tested for co infections.
 
What do you mean about the buzzing and stabbing being symptomatic?
 
I am scared that I will never get to the bottom of this or maybe it will be too late!


----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 10/30/2008 4:44 PM (GMT -6)   
Symptomatic meaning "caused" by the mercury. Good you have none, it just came to my mind when I read your symptoms. Similar to mine. Good luck-

Sulma
Regular Member


Date Joined Apr 2008
Total Posts : 366
   Posted 10/30/2008 4:51 PM (GMT -6)   
Generally stabbing musculoskeletal pain during the first 8 months or so of my symptoms. Could just be the progression of the disease or perhaps a result of my consistent heavy metals and neurotoxin detoxing for the last 18 months, but generally I get very little pain in my body anymore and even I do it's just slight aches.

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 10/30/2008 4:59 PM (GMT -6)   
Sulma are you referring to lyme that you have?
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Sulma
Regular Member


Date Joined Apr 2008
Total Posts : 366
   Posted 10/30/2008 5:07 PM (GMT -6)   
king1234 said...
Sulma are you referring to lyme that you have?


Yep. The headaches are the only real pain I ever get anymore, and they aren't nearly as bad as they once were.

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 10/30/2008 5:11 PM (GMT -6)   
Did you have extreme joint cracks in your body as well? That is the oddest symptom of all of them to me...and well the easiest to deal with.

----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Sulma
Regular Member


Date Joined Apr 2008
Total Posts : 366
   Posted 10/30/2008 5:15 PM (GMT -6)   
king1234 said...
Did you have extreme joint cracks in your body as well? That is the oddest symptom of all of them to me...and well the easiest to deal with.


You know that's the one symptom I've never gotten. No idea why though. Joint pain I had bigtime until I got on the chlorella in jumbo doses, but never had the cracking that so many people complain of.

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 10/30/2008 5:19 PM (GMT -6)   
What did your joint pains feel like? Was it more of an ache or deep set pain, did it stay in one location or jump around?

Also did you get muscle twitches etc too?>
 
Thanks so much
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Sulma
Regular Member


Date Joined Apr 2008
Total Posts : 366
   Posted 10/30/2008 5:25 PM (GMT -6)   
king1234 said...
What did your joint pains feel like? Was it more of an ache or deep set pain, did it stay in one location or jump around?


Also did you get muscle twitches etc too?>



Thanks so much


Not sure of the distinction you're trying to describe, but the pain was pretty bad. Sometimes like a sharp "red hot" stabbing (especially in my fingers) that eventually became pretty much intolerable. Yeah I get the twitching too. Magnesium helps that a lot. Make sure not to take any caffeine b/c that both blocks the absorption of magnesium and it also binds the mag already in your muscles. The Borrelia (lyme) is literally eating the mag in your body and the severe deficiency is most of the reason that you are twitching. It's also part of the reason we all experience insomnia. We need actually more than the RDA of mag since a portion of it is getting eaten by the little ******s in us.

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 10/30/2008 5:31 PM (GMT -6)   
You have been so helpful. I wish my Igenex report had two positives though  I really pray one of the co infections comes back pos--I know it sounds odd but I just want a diagnosis!
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 10/30/2008 5:32 PM (GMT -6)   
Hand/finger pain: Achy joints - which joints ache varies from time to time. Sometimes I also get shooting pains from elbow down arm and spreads across back of hand to knuckles, and is often associated with an inability to continue holding on to something I've got in my hand. Both are worse from gripping things, writing, using a knife to chop veggies, etc. Often worse in the morning when I first get up, and also worse in the evening or after a lot of hand-intensive activities.

Leg pain: One leg or the other, sometimes both, sometimes one leg will hurt one day & the other leg will hurt the next day. Does not occur every day - seems somewhat random, although having my menstrual cycle seems to bring it on more easily. Deep ache, moving from place to place, shooting, throbbing, feels like muscles in legs being shredded one muscle fiber at a time; pains can be in joints (knees, ankles, hips) and / or extending into muscles/other parts of legs. Sometimes this pain extends down into my feet. Once the pain starts, it is worse from bending my knees, standing, movement, & better from heat. Regular stretching and toning exercises help reduce severity and frequency; any change in activity level can trigger the pains. This pain is the first symptom I ever had (age 4; started soon after being bitten by a Red Fire Ant - this is believed to be the source of my Lyme but there is no proof...), and no treatment has ever made it disappear for good (longest "break" from this pain was 4 months).

Feet pain: The joint corresponding to the base of the large toe is very tender to touch (feels bruised, achy) ~ this is worse on my right foot. I also have bunions, so I don't know how much of this is Lyme vs. the bunions hurting. Also, if I stand for too long, the bones in my feet start to ache quite severely, as if I've been standing barefoot on a cement floor (better with improved arch support & more stable shoes, but it still happens). The bottoms of my feet also hurt every day when I first wake up, but this goes away after I get out of bed.

Back pain: Deep ache in lower back (muscles and joints) when sitting or lying down in one spot too long.

Abdominal pain: Intermittant "twinges" & can be "punched in the stomach" feeling pain, sharp & darting pain, stabbing pain, and/or crampy pain.

Headaches: Achy, pressing/boring, or throbbing pain. Often accompanied by neck muscle soreness and neck vertebrae joint aches. Sometimes the headache pain is in my forehead, sometimes in the back of my head just above my neck, sometimes behind one or both eyes, sometimes it moves around my head, sometimes feels like I have a headband on (encircling my forehead around above the ears and to the back of my head), sometimes the pain is only on one side or the other. Symptoms that come along with most all of my headaches include nausea, eyes more sensitive to light, fatigue, & difficulty concentrating. Migraine medication does not work for these headaches (meds used to help before I stopped eating gluten grains).

Nettles completely relieved the hand & foot pains and significantly reduced the severity of the leg & back pains when I was able to take it (am unable to eat/swallow anything now, so looking for other ways to get the nettles).


-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G-J Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 10/30/2008 5:38 PM (GMT -6)   
Very informative-thank you! Was it hard for you to get a dx for lyme?
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 10/30/2008 5:42 PM (GMT -6)   
Yes. Nobody thought to even look for it until late last year, and living in the Pacific NW significantly reduces the acceptance of this diagnosis by most local doctors.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G-J Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 10/30/2008 5:46 PM (GMT -6)   
I hear you, I live in San Francisco so I dont know the likelyhood that i have this
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 10/30/2008 6:16 PM (GMT -6)   
King, I am in Texas. When I was searching for a doctor here in Dallas they told me the best Lyme doc they had here moved to San Fransisco. Are you familiar with her, do not have a name but she is a female and a LLMD.

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 10/30/2008 8:44 PM (GMT -6)   
Well there is only one Lyme dr and I see his asscaite who is a woman, Dr Green. She is pretty thorough but has not dx me for lyme as she had me do a bunch of blood tests..
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


pjbat
Regular Member


Date Joined Dec 2007
Total Posts : 119
   Posted 10/30/2008 8:53 PM (GMT -6)   
My symptoms started as tingling in extremities and face, random stabbing pains and a deep ache in my legs. Now, my biggest complaint, in addition to the fatigue, is pain. I have a difficult time describing it... a deep, searing, aching pain in my legs, arms, feet, hands and face (through my jaw line), sometimes worse in one place than the other. My pelvic area is very sore and down the sides of my upper legs.
 
I am in northern California also. I don't know where I got bit by a tick. I've hiked and mountain biked in Marin County, Sierra Foothills, etc.  It took over a year to get the diagnosis as doctors kept telling me Lyme is rare here.
 


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 10/30/2008 9:01 PM (GMT -6)   
Wow thanks for sharing. Would you get random pains say in a finger for a minute and then the pain travel to a toe or another location? My pains can last a minute to hours then move on. Mine are very deep too and its a pain like I have never felt, almost like a toothache or a cold deep bone pain.
 
Did you have twitching, buzzing in your extremities or anything else?
 
I live in San Francisco so I have no clue how I would have gotten it. I do not remember being bit by a tick recently, nor had a recent fever. The one time I remember a tick bite was 17 yrs ago in Connecticut.
 
Did you test positive with Igenex? See I only tested pos on band 34 and IND on 41 and another...on the IGM.
 
My extreme joint cracking is the only thing making me think this is lyme, and the sudden onset of everything.
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 10/30/2008 9:23 PM (GMT -6)   
king: Dr C in Missouri diagnosed me with having Lyme with IND on 41 and 31. He says 4i is especially significant.

king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 10/30/2008 9:32 PM (GMT -6)   
Wow you all are really helping me. So I just looked at my records I was pos on 31 and IND on 34 and 41 on the IGM on the IGG I was IND on 34, 39 and pos on 41.
 
I go back to the LLMD in a couple wks, I hope she gives me a dx and wonder why she did not my first time there when I had these results in hand?
 
How much better do you feel now that you have had treatment?
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


pjbat
Regular Member


Date Joined Dec 2007
Total Posts : 119
   Posted 10/30/2008 10:25 PM (GMT -6)   

I had all kinds of really wierd pains.  They would just strike randomly and last maybe a couple of minutes or a couple of days. Fingers, ribs, legs, feet, etc. Once I woke up and my middle finger felt like it was broken. Then it went away. This doesn't happen nearly as much anymore but occasionally it will.

I was tested through IGenex and was positive on a few bands on the western blot but not enough for a CDC positive. However, another PCR test did show I was positive. My LLMD said that test 'doesn't lie' and he's been treating me since (Feb, 08). I do feel I'm better but still have a way to go. Ups and downs, day to day. I'm confident I will get completely well but know it will take time. The key is seeing a good llmd.

I can't remember where I read or heard about someone getting Lyme from a tick bite in Golden Gate park. And I have met several people in the doctor's office waiting room who live in the bay area and other parts of northern California.


 


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 10/30/2008 11:09 PM (GMT -6)   
Thanks so much for all the feedback. My pains are fleeting odd pains like you described, I have never had pains like this...it isnt ache but literally what I would think a toothache in the bones would feel like. If this all didnt just onset for the most part at once I would know its MS, also my EXTREME joint cracking I dont think fits MS either. Sometimes the same joint will crack 5 times back to back. Othertimes I can feel my shoulder or knee popping out of the socket. Its bizarre.
 
Did you get buzzing feelings at all? Sometimes it feels like a cell phone is on my foot vibrating, either for hours or just a few seconds. My pointer finger has been going numb the past few days too.
 
Some of this could be the stenosis in my neck that I just found out I had, but most of it I am sure isnt since my issues are widespread in my body. The  odd thing is when I first had these pains I had a full body bone scan, I was so worried I had bone cancer because the pains are so deep. Well stenosis of my neck nor the slight DDD mid back was report though they both were in my MRI. Odd.
----------------------------------------------------------------------
33 yr old female
 
GERD dx March 2007
Migraines with Aura
IBS
Currently no dx for:  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. New as of Aug-muscle twitching throughout my body. 
 
New as of Oct- DX with mild to moderate c spine stenosis and compression on spinal cord .
 
TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH (seems to flucuate alot),T3 -Too many to list -all CLEAR
 
Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
 
 
 
 
 
 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 10/31/2008 1:30 AM (GMT -6)   
King,

DDD and stenosis affects soft tissue and thus won't show up in a bone scan.

Take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G-J Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).

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