Top 5 symptoms of your disease

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Regular Member

Date Joined Jan 2010
Total Posts : 134
   Posted 1/29/2010 1:09 PM (GMT -7)   
For me,
a) Knee Joint pain
b) Leg muscle pain
c) twitching
d) Knee pain again
e) feeling sleepy by 5pm everyday.

Veteran Member

Date Joined May 2007
Total Posts : 517
   Posted 1/29/2010 1:16 PM (GMT -7)   
abdominal pain/GI issues
joint pain
heavy legs/leg pain

ok I added a few more....and this is only a few of them

Regular Member

Date Joined Jun 2009
Total Posts : 367
   Posted 1/29/2010 1:47 PM (GMT -7)   
1) heel pain, burning feet, heavy leg feeling
2)stabbing pains in shoulders and back
4)twitching eye and face muscles
5)ear ringing and light sensitivity

sorry- more than 5!

Forum Moderator

Date Joined Mar 2009
Total Posts : 2154
   Posted 1/29/2010 1:52 PM (GMT -7)   
2. Heart palps
3. Joint/muscle pain
4. fatigue
5. Head pressure

Regular Member

Date Joined Aug 2009
Total Posts : 89
   Posted 1/29/2010 2:11 PM (GMT -7)   
1. knee pain
2. Neck pain
3. Vision loss
4. fatigue
5. shoulder pain
Kathleen( Momtomonsters)

Regular Member

Date Joined Nov 2009
Total Posts : 99
   Posted 1/29/2010 2:50 PM (GMT -7)   
For me,
a) stroke
b) fatigue
c) heart palpitations
d) auto immune
e) hypothyroid

Not necessarily in that order.
Are theses all from Lyme? Maybe.
My family and I have been enjoying my life without surgar dairy gluten and soy for many years.

Found out about it in spring of 2009 that I have been living with Lyme for over 8 years. My symptoms of Lyme have been Mini-Strokes/TIA's, Hashimoto's disease, swelling of my liver and kidneys. Anaphylactic reactions to raw apples, raw carrots, and Beef. Allergies to dairy, gluten, and Soy.

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 1/29/2010 3:26 PM (GMT -7)   
I have so many dx I don't know what is Lyme and what isn't!! :(

I've been told I don't have MS, so here are my top 5 "unexplained" neurological symptoms:

double vision/blurry vision
tingling/numbness in random spots
ringing in ears
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN

Nicky D
Regular Member

Date Joined Jun 2009
Total Posts : 361
   Posted 1/29/2010 4:20 PM (GMT -7)   
I can only pick 5! Ok, I'll try-

1) Tendon pain (everything from carpal tunnel to plantar fascitis)
2) Extreme sleepiness/narcolepsy (could sleep 16+ hours a day, and fell asleep during the day when I didn't want to)
3) Cognitive problems/brain fog
4)Shin pain
5) Twitching/burning and tingling
6 (couldn't do it)) Digestive/gut problems

I also have mild hypothyroidism due to Lyme, but it doesn't effect me nearly as much as everything else. And, to be honest, I think I have to say those are a random set out of my top 8-10 symptoms- I have a bunch of others that effect me just as much that I left out

Regular Member

Date Joined Nov 2008
Total Posts : 90
   Posted 1/30/2010 7:31 AM (GMT -7)   
1.Brain fog(cognitive/memory problems/anxiety) --- homebound
2.All body numbness
3.extreme fatigue
4.head pressure
5.neck/back pain
have lyme since 2004

Forum Moderator

Date Joined May 2007
Total Posts : 35859
   Posted 1/30/2010 9:20 AM (GMT -7)   
Heck!!! I don't know which 5 to list!!!!!

My top three;
1. cognitive issues
2.Muscle/nerve issues
3. the extreme fatigue we Lymies can have

After that, the rest of my sx keep trying to be first on the list!!!!
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.

mother natures child
Regular Member

Date Joined Oct 2009
Total Posts : 231
   Posted 1/30/2010 3:31 PM (GMT -7)   
back,joint,muscle pain
rapid,irregular heartbeat
forgetfulness,poor concentration
high blood pressure,TIAs
headaches with vision changes
G I issues
5 arent enough!
 I am a Zebra

Veteran Member

Date Joined Mar 2009
Total Posts : 4717
   Posted 1/30/2010 3:31 PM (GMT -7)   
1- Flu-like symptoms
2-neuro problems (head, hand, arm jerking but my head is the worse)
3-debilitating fatigue
4-muscle/joint pain
5-brain fog (Can't find right word to say. Put two words together)
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Veteran Member

Date Joined Mar 2009
Total Posts : 4717
   Posted 1/30/2010 5:20 PM (GMT -7)   
I am the way I am because my liver is not allowing me to get better. It starts swelling when I take certain medications. That's why I'm going back to Florida next month to get answers on what to do next. I also have auto immune problems along with all of this mess. I'm complicated. Please don't let me not getting better worry you.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Veteran Member

Date Joined Mar 2009
Total Posts : 4717
   Posted 1/30/2010 5:21 PM (GMT -7)   
Btw, I have that many posts because I Moderate and I also tend to talk a little too much, lol.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Veteran Member

Date Joined Mar 2009
Total Posts : 4717
   Posted 1/30/2010 9:39 PM (GMT -7)   
Oh no, you didn't make me feel worse. It takes alot to make me feel bad.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Veteran Member

Date Joined Aug 2007
Total Posts : 4399
   Posted 1/31/2010 1:32 AM (GMT -7)   
GI issues (dysmotility, inflammation, nausea, gluten sensitivity, food allergies, etc.)
Chemical sensitivities (foods, perfumes, paint fumes, etc.)
Neuro issues (wandering pains in legs/knees/feet/hands/back/hips, tingling, coordination problems, etc.)
Brain fog (forgetfulness, "brain freezes", inability to concentrate, etc.)

Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.

Regular Member

Date Joined Aug 2009
Total Posts : 103
   Posted 1/31/2010 6:05 AM (GMT -7)   
Severe allergy to sunlight (started March 2009- may be gone now)
Swollen ankles and painful joints (gone now)
Numbness (gone now)
Lazy face (still comes and goes)
Stabbing pains in toes and fingers- causes me to jerk (much less now)
Brainfog (still here)

I had to mention 6 :)

Post Edited (mokeyho) : 1/31/2010 6:08:05 AM (GMT-7)

Veteran Member

Date Joined Feb 2008
Total Posts : 900
   Posted 1/31/2010 7:21 AM (GMT -7)   
1. Brain function - memory, ability to concentrate
2. dry sensitive eyes
3. hot flashes
4. painful shins
5. motivation, feeling down and disconnected

Pure bartonella
Most of lyme symptoms I had are gone so that treatment probably did it's job.

Veteran Member

Date Joined Dec 2006
Total Posts : 3533
   Posted 2/2/2010 7:57 AM (GMT -7)   
1. Ulcers in my colon
2. Undigested food, gas and bloating
3. Urgency, often have accidents in my pants
4. Bloody diarreah, hours on the toilet
5. tired a lot and depressed
Very mild left sided (could have fooled me with the "mild")  UC.Just found out 4 years into it I might have Lyme's Disease, going to a LLMD in December. Confirmed Lymes on 12/8/09 before my new antibiotic protocal from my LLMD, I  Started and stopped LDN ON 1/25/09 to mid May no improvements. Tried Asacol, Pentesa, Colozol, Sulfasulsadine and Lialda, they made me worse. A range of antibiotics, not much better. Supplements: Threelac, multi, iron, very low yeast/sugar/wheat  No UC meds at this time. Started Doxy and Cedfinir too rough on stomach, started Bicillin injection 1/12/10, once a week of injections. Feel much more energy on shot.

Regular Member

Date Joined Oct 2008
Total Posts : 99
   Posted 2/2/2010 2:19 PM (GMT -7)   
Interesting. How many symptoms of anxiety are Lyme symptoms. I've have nearly all of these...

From (
Common anxiety symptoms include:
Body (anxiety symptoms commonly associated with the body in general):

* Allergy problems, increase in allergies (number, sensitivity, reactions, lengthier reactions)
Back pain, stiffness, tension, pressure, soreness, spasms, immobility in the back or back muscles
* Blanching (looking pale, loss of color in the face or skin)
* Blushing, turning red, flushed face, flushed skin, blushing, red face or skin
* Body jolts, body zaps, electric jolt feeling in body, intense body tremor or “body shake”
* Body temperature increase or decrease, change in body temperature
* Burning skin, itchy, “crawly,” prickly or other skin sensations, skin sensitivity, numbness on the skin
* Burning skin sensation on the face, neck, ears, scalp, or shoulders
* Chest pain, chest tightness
* Choking
* Chronic Fatigue, exhaustion, super tired, worn out
* Clumsiness, feeling clumsy, co-ordination problems with the limbs or body
* Cold chills, feeling cold
* Craving sugar, sweets, chocolate, usual craving for sugar and sweets
* Difficulty speaking, moving mouth, talking, co-ordination problems with the mouth or tongue
* Dizziness, feeling lightheaded
* Dizzy, feeling dizzy
* Electric shock feeling, body zaps
* Excess of energy, you feel you can’t relax
* Falling sensation, feel like your are falling or dropping even though you aren't
* Feel like you are going to pass out or faint
* Feeling cold or chilled
* Feel wrong, different, foreign, odd, or strange
* Flu-like symptoms, general malaise, feel ill, like you are coming down with a flu
* Flushed face, red face, flushed skin
* Head Zaps
* Heart palpitations, racing heart
* Hyperactivity, excess energy, nervous energy
* Increased or decreased sex drive
* Infection - increased infections, persistent infection
* Mouth or throat clicking or grating sound/noise when you move your mouth or jaw, such as when talking
* Muscles that vibrate, jitter, tremor, or shake when used
* Muscle twitching
* Nausea
* Nausea vomiting
* Neck, back, shoulder pain, tightness/stiffness
* Night sweats, waking up in a sweat, profusely sweating at night
* No energy, feeling lethargic, tired
* Numbness
* Numbness tingling, numbness and tingling
* Numbness and tingling, and other skin sensations on hands, feet, face, head, or any other places on the body
* Persistent muscle tension, stiffness
* Pounding heart, heart feels like it is beating too hard
* Pulsing or throbbing muscles. Pulsing or throbbing sensation.
* Rib or rib cage tightness, pressure, or feeling like a tight band around the rib cage
* Sexual Dysfunction, sexual uninterest
* Shooting pains, stabbing pains, and odd pressures in the neck, head, or face
* Shooting pains in the face
* Shooting pains in the scalp or head
* Skipped heart beats
* Sore or tight scalp or back of the neck
* Startle easily
* Sweating, uncontrollable profuse sweating
* The floor feels like it is moving either down or up for no reason
* Tightness in the ribs or rib cage area, may also feel like a tight band around the ribs or rib cage area.
* Tingling sensations, anywhere on the body, including the hands, feet, legs, arms, head, mouth, chest, groin area
* Throat or mouth clicking or grating sound/noise when you move your mouth or jaw, such as when talking
* Trembling or shaking
* Twitching
* Unsteadiness, dizziness, feeling dizzy or lightheaded
* Urgency to urinate, frequent urination, sudden urge to go to the washroom (similar to urinary tract or prostate infection symptoms)
* Warm spells
* Weak - feel weak, weakness, low energy, light, soft, like you may faint
* Weak legs, arms, or muscles
* Weight loss, weight gain
9/28/08 - 11/8/08 100mg Doxy b.i.d. 42 days
11/5/08 - 11/20/08 Salt/C, grapefruit seed extract, COQ10, omega 3.
Ceftin 500mg, 2x per day; Plaquenil 200mg, 2x per day; Mepron 750mg, 2x per day; Zithromax 500mg, 1x per day.
3/26/09 - Doxy. 200mg 4x, Clarithromycin 500mg X2
Acidolphilus and Saccharomyces, cat's claw & omega 3.
Low carb, no wheat, no alcohol, no yeast, no caffeine, no sugar.

Presently -- Salt /C , Omega 3, Multi vitamin & minerals, probiotics. Low carb diet.

Veteran Member

Date Joined Aug 2007
Total Posts : 887
   Posted 2/3/2010 4:04 PM (GMT -7)   
1.  tingling in all 4 extremeties (started in 1 finger and progressed from there)
2.  Joint pain mostly in both hips and middle finger, have had JP in just about all my joints at one time or another.
3.  trouble remembering what something is called/brain fog
4.  heart palps
5.  twitching
01 Tingling in fingers/toes both sides, not tested at that time for LD
07 Summer pos. WB, diag with LD, neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Dr. Zhang's protocol stopped after 6 months symptoms returned.  Started Buhner's protocol May 2009

Veteran Member

Date Joined Oct 2006
Total Posts : 851
   Posted 2/4/2010 4:39 AM (GMT -7)   
1) awful fatigue
2) low-grade fevers up to 101 F
3) cognitive challenges
4) back pain
5) nausea
*Oral Abx Combo Tx since Jan/08*
Lyme disease - clinical dx ’08; Babesiosis (Positive IgM/IgG) '08;
GERD '05; Essential Tremor ’02; Fibromyalgia ’00; Osteoarthritis; Depression; IBS; Interstitial Cystitis

Post Edited (spaztick) : 2/4/2010 4:44:50 AM (GMT-7)

New Member

Date Joined Jan 2010
Total Posts : 4
   Posted 2/5/2010 4:56 AM (GMT -7)   
2) terrible fatigue
3) weakness - in my legs
4) Knee and Back pain
5) Tunnel Vision
I really do apperciate it!
You make me feel welcomed!
(ashleyf3's daughter)

Martha's Vineyard
Veteran Member

Date Joined Jul 2008
Total Posts : 1119
   Posted 2/5/2010 10:39 AM (GMT -7)   
My worst symptoms were:
1) mirgrian every day.
2) fever of 100-102 every day
3) pain all over body almost every day.
4) veritgo, unable to walk without holding on to things.
5) cronic fatique, never felt like I had been to sleep.
6) insominia, dementia, brian fog.......
Our family all got lyme in 2004. It has been a long battle. But all is well now with my children. Feb 8 TH of 2009 is when I left Envita. And I am celebrating a year of perfect health.

Veteran Member

Date Joined Oct 2007
Total Posts : 1172
   Posted 2/6/2010 8:28 PM (GMT -7)   
1. fatigue
2. constant all over body ache
3.brain fog
4. joint pain
5. multiple chemical sensativity
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