What Does Lymes Disease Feel Like To You?

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Regular Member

Date Joined Feb 2011
Total Posts : 186
   Posted 6/28/2011 6:36 AM (GMT -7)   
I'm trying to understand why I'm feeling the way that I do. I do not have a diagnosis of Lymes disease in fact I've had both an ELISA and Western Blot as well as a few co-infections tested but all was negative except 1 band was inconclusive. I still feel that Lymes is a possibility. I would really really like to hear what Lymes disease feels like to you. I would really appreciate as many people as possible to just sum up in a paragraph or so what it feels like.

Thanks in advance.

Post Edited (jr991) : 6/28/2011 9:37:00 AM (GMT-6)

Forum Moderator

Date Joined May 2007
Total Posts : 35855
   Posted 6/28/2011 8:28 AM (GMT -7)   
Seriously? In one paragraph? I don't think I can sum up what LD & co-infections feel like in only one paragraph!!! LOL! How about 20 paragraphs? LOL!

It felt like my world was coming apart at the seams! As if my body had decided all of a sudden that it didn't want to play any more! Many times through out my infections, I really felt as if I would die in just a short amount of time, but first I was going to have to really suffer.

Please remember that the blood tests that are available for most of us are far from being very reliable to exclude LD or co-infections as a source of our problems. Theses test look for the body's response to the infections. If, like me, you acquired your infection(s) a while ago (decades for me) - then the body has already been taken over by these infections and the body's responses to these infections squashed - by the infections!

Some will test positive after a couple of weeks of high dose abx, for me it took my being on abx (Minocin) for a full year before I had positives on some of my infections. Even then, only 40 - 60% of those infected will test positive! You need to be seen by someone who is capable of diagnosing clinically (by symptoms) as well. That's how I got my first dx (diagnosis), as well as quite a few others that have been here on HW.

Something that you can do is to read through the thread at the top of the forum titled "New to Lyme?", as it has some great lists of symptoms, and other things that you can read to help you evaluate yourself. Also read Dr. Burrascano's "Advanced Topics in Lyme Disease", although the main focus is on Ld itself, beginning on page 26, he lists the symptoms of the most common infections, including Lyme, Bartonella, Babesia, and Ehrlichia. This
may help you in understanding what you may be having issues with.

I hope this helps!
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs.

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, which makes long paragraphs very hard to read.

Forum Moderator

Date Joined Nov 2009
Total Posts : 3266
   Posted 6/28/2011 10:17 AM (GMT -7)   
What does Lyme disease feel like? Twenty-five year's worth; not a proper paragraph...

*Flu, Ow -joint ache, Ow - migraine, Rage, Irritability, Ow - painful periods, Ow - intestinal pains, Fatigue, Panic, Anxiety, Ow - random pains, Ow - tubal pregnancy, Ow - Heart arrhythmia, angina, Ow - back pain, Personality change, Ow - Endometriosis, Ow - Heart break (cannot have more children and crashed marriage), Ow - bone-crushing fatigue, loss of cognitive function, lost in own hometown, Collapsing without warning, frustration at no diagnosis.** Return to "*" and work through to "**". Repeat annually until: Depression, insomnia and psychotic event, Ow - more heartbreak as said event was witnessed by family. Relief as diagnosis of Lyme Disease is finally made.

For a complete and less personal list of symptoms please see the "New to Lyme" thread that Traveler mentioned!

Hope you get some answers soon.
Co-Moderator Lyme Disease Forum

Veteran Member

Date Joined Nov 2010
Total Posts : 571
   Posted 6/28/2011 12:06 PM (GMT -7)   
All I can add is what I said to my sister over a year ago:  
How can a perfectly healthy, athletic, vibrant person have so many weird little things wrong with them---all within six months--and for no reason?  
Then one morning I walked into a wall......and suddenly the 'things' weren't so little anymore.
All except for the ticks.   devil

New Member

Date Joined Jun 2011
Total Posts : 5
   Posted 6/28/2011 12:27 PM (GMT -7)   
Its when you have unexplained and strange symptoms that you've never had before become part of your daily life and turn it upside down. Its when you wonder what the heck your body is doing now and how the heck do I handle this one? Its when regular medical tests prove you are fine but your symptoms say you are not. Its when you feel so alone because talking to someone whose never had it is like talking to a wall and leave you feeling more depressed and alienated than before. Its when you feel your own, once very healthy body, which you used to love, becomes your enemy. Its when you finally get the right treatment and start to feel normal again that you realize just how sick you were.

We are all lucky to have this forum to feel we are not alone and have people who understand. That is healing in itself. Not to mention the great advice, caring & understanding.

Good luck on your healing journey..

J. Johnson
New Member

Date Joined Jul 2011
Total Posts : 2
   Posted 7/5/2011 3:03 PM (GMT -7)   
Pain, pain. Exhaustion, and more pain. For me, it started as a "flu" not long after pulling an engorged tick off my body. After that, some big funky bug bites (not a bullseye, so I didn't think anything of it) and a weird rash on the backs of my hands (I call it "old lady hand" - wrinkly, transparent, blotchy skin where it had been completely normal young person skin days before). Then the fatigue and pain really set it.

I thought I was working myself too hard in the garden, but the aches didn't go away - they got worse. One morning I woke up with excruciating pain in both ankles. I hobbled around for a few days hoping it would go away, but it got worse. Then I woke up with excruciating pain in my left knee. I couldn't bend it and I had to ask my boyfriend to help me get my pants on so I could go to the ER where they tried to convince me that it was "probably fibromyalgia or rheumatoid arthritis". For the next 8 weeks, the pain would get worse - often to the point of not being able to put my feet on the floor, they were that sore. Migrating aches and joint pains, stabbing pains in the chest, arms, legs. Sore neck that crackles like rice krispies when you move it.

I also have increased floaters in my eyes, blurry vision, extreme dizziness, debilitating fatigue, extreme weakness in my arms and legs, feeling like my legs weighed a thousand pounds each, trouble walking, confusion, trouble finding the right word, getting lost, short term memory problems, ringing in both ears, numbness and tingling in hands and feet, restless legs, drenching night sweats, jaw pain, tooth pain, headaches, hair loss, unexplained overnight weight loss, anxiety, chest pains, trouble breathing (air hunger), paranoia, delusions, sensitivity to light and sound, heat intolerance, irritability, sleep disturbances. I often woke up feeling as if I had run a marathon in my sleep and the simplest of household chores would leave me worn out for days afterward. I literally had to drag my youngest child around in his infant car seat/carrier because I couldn't lift him (he weighs 20 lbs, I can normally lift 100 lbs).

I'm sure there are some symptoms I am forgetting, but the clencher for me was the "arthritis" in my ankles and the joint pain in my knee (when there was no injury). I have tested negative twice by ELISA, and I haven't had the western blot test (yet). Despite the two negative tests, I was treated twice by two different emergency departments for Lyme disease after they failed to find anything else wrong with me that could cause my "arthritis" - once for an inadequate 2 week period despite presenting with late disseminated lyme disease and then for three weeks with a combination of antibiotics that seems to have done the trick (at least mostly, for now. I can walk again, and I am happy with that).

Regular Member

Date Joined Feb 2010
Total Posts : 184
   Posted 7/5/2011 3:18 PM (GMT -7)   
Severe muscle tenderness, extreme exercise intolerance, chest pain, abdominal pain, chronic diarrhea since taking high dose antibiotics, heat intolerance, cold intolerance, memory loss, difficulty concentrating, hormonal problems, hot flashes, weird rashes that come and go, etc, etc...tick bite at 12 years old, now 38: miserable.

Regular Member

Date Joined Feb 2011
Total Posts : 137
   Posted 7/5/2011 7:29 PM (GMT -7)   
My Lyme symptoms in chronological order... (pre-treatment)

Flu Like Symptoms
Panic Attack
Air Hunger
Brain Zaps
Unable to Concentrate
Swollen/Tender Lymph Nodes in Neck
Weird Pain in Feet
Memory Loss
Jumbling Words
Alcohol Intolerance
Social Withdrawal
More Fatigue
Weight Gain
Body Rashes All Over
Light Sensitivity
Fragile Joints
Social Anxiety
Blurred Vision
Extreme Fatigue

Veteran Member

Date Joined Apr 2009
Total Posts : 1304
   Posted 7/5/2011 9:44 PM (GMT -7)   

MOst of the above, but I will sum up the way Lyme feels to me, NOT including the infections and illnesses it can lead to. Just the Lyme itself if you get what I mean, ie; when I know it is Lyme acting up and not another illness or issue caused by Lyme:

Difficult to properly describe the 'buzzing', 'throbbing', fuzzy movement throughout my body. Sore, achey, throbbing entire mouth and jaws. Again, a kind of movement inside my body will distinguish to me the difference in my Lyme and my babesia and CEBV.

TOTAL body aches and inflammation type feelings-- similar to a flu, but more inflamed. Throbbing and 'buzzing' -- something boiling and moving under my skin.

Incapacity to concentrate, comprehend what I'm reading (or doing), and remember.

I have all the symtoms that Mystery Lyme has listed. However, I attribute many of these to incompetencies and other illnesses directly caused by Lyme.
God bless and hope this helps.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Regular Member

Date Joined Jun 2009
Total Posts : 285
   Posted 7/6/2011 2:56 AM (GMT -7)   
Had Lyme disease, spent 2 weeks in the hospital, diagnosed correctly and completely recovered in four months. I am one of the lucky ones to be diagnosed early still it was the worst four months of my life.
One year later diagnosed with breast cancer. Had surgery and 36 days of radiation.
I will always say I would rather have cancer than Lyme disease. I know I very well might die from it, but at least I am not sick as I was with Lyme.
With Lyme I had a fever 104, bp 60/40 tried to get out of bed to use the bathroom and slid to the floor, could not get up, this is what landed me in the hospital via ambulance. Diagnosed and came home to recover had unbelievable fatigue, tremors, couldn't even write, cold all the time, brain fog. When I found HW I realized actually I had a mild case of Lyme and was one of the lucky ones. I had no idea of the many symptoms there are untill I came here and then knew I was spared from almost all of them.
Please, if you even THINK you have it see a doctor ASAP catching it early is everything.  Knowing what most members at HW are going through is heartwrenching and so undeserved I know we all want you to be cured from this terrible disease.
There are so many experts here, I am not one of them, so read what others have to say and learn all you can.

Regular Member

Date Joined Jan 2011
Total Posts : 129
   Posted 7/6/2011 4:38 AM (GMT -7)   
That is an awesome description!!  I dont think I could have said it any better myself!! 

Forum Moderator

Date Joined Mar 2009
Total Posts : 2154
   Posted 7/6/2011 6:18 AM (GMT -7)   
Achy joints, daily headaches, sudden severe pain anywhere in body, numbess and tingling anywhere in body, chills shoot throughout body, blurry vision, trouble sleeping, severe anxiety, depression, ringing ears, and just never ever feeling "normal."
Lyme, HME, HGE, bartonella. 4+ years undiag. despite 10 drs.
Current meds: roxythyroxine, bactrim, doryx, amanatadine, neurontin, xanax, cymbalta Prior meds: amox, minocycline, tetracy. IV refused by ins. Supplements: boluke, alpha lipoic acid, AG immune, magnesium, milk thistle, resistant microbes, coq10

Veteran Member

Date Joined May 2007
Total Posts : 517
   Posted 7/6/2011 7:53 AM (GMT -7)   
My early Lyme symptoms ~
* Rash at the site of engorged tick (on buttox)
* Rases that looked like curling iron burns (on back)
* Flu like symptoms
* Ringing in ears
* light & sound sensetivity
* severe IBS (prior to starting ABX)
* Pain under rib cage
* Abdominal pain
* Malaise
* Insomnia
* Bladder disfunction

Additional symptoms ~
* Panic attacks
* Air Hunger
* Extreme fatigue
* Body twitching (all over)
* crawling feeling under skin (all over)
* Neck pain, cracking
* Back pain
* forgetfullness/Memory loss
* Rage
* continuing IBS

This is just a sample of symptoms I have experianced with my infection.

I was one of the "luck ones" who had a confirmed exposure with ticks. I removed over thirty ticks from my body over a four day period; many nymph sized. Unfortunatly I missed one I found in the shower the morning after my exposure. I removed the engorged tick with my finger nails and washed it down the shower drain. Within 24hrs. I started having flu like symptoms, I waisted nearly a year going to my PCP who diagnosed me with IBS, and posible Crohn's disease. I had numberous blood test that only showed band 41++ even from IgeneX. Thankfully I found a LLMD who finally gave me a Lyme DX thirteen months after my exposure.

My personal opinion is Lyme testing is VERY VERY inaccurate. If you feel you may have a TBI you need to see a Lyme literate doctor and get a clinical DX.

Best Wishes
I am not a doctor, my posts are not medical advise.
Infected Memorial day weekend 2006.
Borrelia, Bartonella, Ehrlichiosis, GI parasites
Current status: 80% recovered

Regular Member

Date Joined Jul 2011
Total Posts : 50
   Posted 7/6/2011 2:28 PM (GMT -7)   
I was "lucky" to have confirmed case as well: started with "flu" absolute worst ever, fever, rash, Severe headache and stiff neck. improperly treated, then for next two yrs: episodes of tachycardia with decreased bp, low pulse ox levels, unexplained decrease in pulmonary function, severe pressure headache and dizziness, stiff neck and back ache, random joint pain, "air hunger"- needing to take a deep breath, brain fog, exhaustion. Keep digging until you get answers! If you think it's possible to have it, START with a lyme literate Dr! Good luck.

Forum Moderator

Date Joined Nov 2009
Total Posts : 3266
   Posted 7/6/2011 6:13 PM (GMT -7)   
Yeah, Lymester,

If this had been a competition, you would have won the prize!!!
Co-Moderator Lyme Disease Forum

Regular Member

Date Joined Jun 2011
Total Posts : 381
   Posted 7/6/2011 8:01 PM (GMT -7)   
You nailed it, Lymester!
I'm a music teacher, and not a doctor. Anything I post is based on my own experience and lay opinion.
Lyme, Babesiosis, Mycoplasma (Asthma), Fibromyalgia (Soft Tissue Injury), Costochondritis,
CFS (Mitochondrial Dysfunction), IBS (Candida & Leaky Gut), Hashimoto's Thyroiditis, Adrenal Fatigue,
ITP (Low Platelets), TMJ, Plantar Fasciitis, Schamberg Purpura, Tinnitis, Allergies, MCS

Veteran Member

Date Joined Nov 2010
Total Posts : 571
   Posted 7/7/2011 4:29 AM (GMT -7)   
My personal top 6--- out of too many symptoms to count anymore-- that I couldn't really describe until I read how others posters nailed them:

Fragile Joints - shoulders particularly

Voodoo doll of me and is using it to constantly torture different parts of my body whenever the mood strikes them.

'Buzzing', 'throbbing', fuzzy movement throughout my body.

Something boiling under my skin.

As if my body had decided all of a sudden that it didn't want to play any more!

Its when you wonder what the heck your body is doing now and how the heck do I handle this one?

.....like for example this brand new symptom I've had for a few days: large areas of skin on my thighs are painful to the touch-- as if I have a big, nasty bruise. But nothing visible is there.

And here's a weird, early symptom I had: My hair-- which is quite long and healthy-- felt like it was made out of wire. I couldn't STAND to have it touch my skin. Had to pin it up for months!
Doxy, Amoxicillin, Azithromax. Now on Mepron, Ceftin and Azith. 7 months of treatment and counting.

Regular Member

Date Joined Jun 2009
Total Posts : 285
   Posted 7/9/2011 12:07 AM (GMT -7)   

Yep, that's Lyme disease alright.
The greatness of a nation is judged by the way it treats its animals.

Mahatma Gandhi
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