How best to describe this illness?

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hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 6/11/2009 4:57 PM (GMT -6)   
I know this is a weird illness, but I don't know how to describe how it makes me feel sometimes.

The pain in my head is dull and my personality seems so flat -- I used to be a livewire.

I also had a strong feeling that in my body that things are so very amiss. Does that make sense? Almost as if I were poisoned. Is that a symptom? What would cause it -- Lyme, co-infections, something else.

Something is so disagreeing.

On holiday from all treatments so this may be why.

Forgive me for the weird symptoms post.
Bit June 08.


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4282
   Posted 6/11/2009 5:48 PM (GMT -6)   
I hope you feel better, I really do!  It does get better, just hang in there, okay?
 
Maybe this will cheer you up:
 
 
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 6/11/2009 6:08 PM (GMT -6)   
hopingToFindCure said...
Does that make sense? Almost as if I were poisoned. Is that a symptom?
When I first got sick... and during the first 2 years... I used to jokingly ask my husband if he was trying to kill me.  I told him that if he was.... I wish he'd speed it up.  Then I went through I period thing that the wiring in the refridgerator was "off" and I was being poisened by copper wire................... Nothing makes sense with this illness.
 
 
skull skull skull skull smhair smhair smhair devil devil blush devil devil smhair smhair smhair skull skull skull skull
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 6/11/2009 6:32 PM (GMT -6)   
Lyme or its neurotoxins can do some really strange things to the brain...hence the strange sensations and perceptions many of us get/have.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), probiotics, homeopathy.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/12/2009 8:06 AM (GMT -6)   
Hoping,

The best way I describe the yucky feeling inside is like a toxic feeling. Is that how you feel?
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


chief #7
Regular Member


Date Joined Apr 2008
Total Posts : 124
   Posted 6/12/2009 10:45 AM (GMT -6)   
Nice thread topic.  I'll give it a shot....
 
Everyday I wake up hoping my pain is gone.  So that I can look back at my time with Lyme Disease and simply describe it as a nightmare.  A nightmare is.....
 
a dream which causes a strong unpleasant emotional response from the sleeper, typically fear or horror, being in situations of extreme danger, or the sensations of pain, bad events, and death. Such dreams can be related to physical causes, psychological causes, psychological trauma and stress in the sleeper's life, and have no apparent cause. If a person has experienced a psychologically traumatic situation in life—for example, being captured and tortured—the experience may come back to haunt them in their nightmares. Sleepers may waken in a state of distress and be unable to get back to sleep for some time.
 
Lyme Disease is a nightmare that lasts an extremely long time, and you are awake for the duration of it.
 
Chief

sickof lyme
Regular Member


Date Joined Aug 2008
Total Posts : 110
   Posted 6/12/2009 10:49 AM (GMT -6)   
I always tell my family :I feel like Im being poisoned!!

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/12/2009 8:36 PM (GMT -6)   
I know the 'toxic' feeling and it is too hard to describe -- been trying to think of a way to do it. Fatigue, pain, cognitive problems, depression, anxiety, irritability ASIDE.... My body is not really 'tingling', tho maybe this is a word you use for lack of a better descript? But it feels as if my whole bloodstream (or SOMETHING) is vibrating just under my skin. It feels toxic, because it feels as if tiny little things, like freaking SPIROCHETES, are in there and in contant motion. Almost a tingly type feeling, more like prickly or even more like vibration. Sorry, don't know how else to describe it.
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 6/12/2009 9:49 PM (GMT -6)   
sickof lyme said...
I always tell my family :I feel like Im being poisoned!!
EXACTLY!!!!!!!!!!!!!!!!!!!!     skull   skull skull   shocked   shocked smhair shocked shocked skull skull skull

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/13/2009 1:22 AM (GMT -6)   
we are being poisoned by TICKS!!!!
   RD
                                                                                                                 
 
still looking for answers
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/13/2009 3:30 AM (GMT -6)   
Lyme,

Omg!!! I feel that too!!!!!! Especially after the dose of antibiotics last week. I felt it when I took Amoxicillian too. It feels like something is moving around in my legs mostly, but I feel it in my arms and my lip sometimes too. I think they are actually moving around and running away from the meds. I think they are trying to find a place to hide. I saw a show on TV about a girl who had Lyme Disease and she explained it the same way. I thought I was going crazy until I saw that episode.

I get the vibrating feeling too. I sometimes think it's my phone ringing since I put it on vibrate at night, but it's me! I swear, I think I check my phone a million times before I finally just give up. Sometimes, I think I can actually hear the vibrating too. It's kind of like the sound a June bug makes. Weird!
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/13/2009 7:58 AM (GMT -6)   
CG, yeah, only it's under my skin. Yeah, bunch of little june bugs buzzing in my blood. Maybe it's what some people mean by their skin is crawling?

I feel like it's everything inside of me. And yeah, the fatigue is getting so bad, maybe I feel like I'm being poisoned. After I got home from work last nite and took my dogs for a VERY short walk, I could hardly walk, literally. the back pain and fatigue were so bad. I've lived w/ a lot of back pain, but when you have NO energy, you just can't keep yourself on your feet and in motion w/ that kind of pain.
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/13/2009 8:13 AM (GMT -6)   
Lyme,

Are you on antibiotics right now? I don't remember but was your WB positive or negative? I think I remember you saying it was negative.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/13/2009 8:14 AM (GMT -6)   
And yes, the feeling I get is under my skin like it's flowing real fast through my blood.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/13/2009 8:28 AM (GMT -6)   
Quest called my WB negative.

I had a problem bite and became mildly ill a few weeks after. I have symptoms now, just never had the bull's eye. But band 39 was positive, so I currently consider myself lyme positive. Band 39 is perhaps the most species specific band of all. So I have been researching WB tests, bands, and any info on possible false positives on the bands. (not the tests in general, because Quest might give a false positive overall if you have enough reactions on bands that are not significant for Lyme. But I cannot find ANYTHING on false positive BANDS)

Because Lyme specific antibodies were found in my blood, I am also searching for any possibility that I was exposed at one time, but no longer have an active infection. If I don't, why do I have symptoms?

My PCP who knows little of Lyme or the tests, but knew enough to order a WB assumes I have lyme. He referred me to LLMD who I will see 2 weeks from this Tuesday. (unfortunately got rescheduled) I hope to learn a LOT more from him, because like others, he left his family practice to devote his life to lyme.

I am not currently on abx, but just finished a round of them for cellulitis in my thumb that stubbornly returned.

Meantime, now that I've become more aware and concerned, I have to put my glasses on and I am finding teeny tiny DEAD ticks in my bed almost daily! (I sleep w/ dogs). Thank goodness they are dead (thank you frontline), but looks like it would be a miracle if I dont' have a TBI!

I will share ALL answers that I find and we WILL find answers!
 
PS: right now (and for 20+ yrs) I take lots of vitamins, megadoses of some.  I strongly believe in C and garlic.


Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/13/2009 8:31 AM (GMT -6)   
Deejavu,

That YouTube video is too funny!!!! I about died!
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/13/2009 8:42 AM (GMT -6)   
Lyme,

Well, we both had negative test but both have the same symptoms.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35706
   Posted 6/13/2009 10:48 AM (GMT -6)   
See if this helps to explain:


http://butyoudontlooksick.com/the_spoon_theory/[url]

I've forgotten how to make the links work rolleyes
but I believe that this is worth the reading.
Trav
- Traveler


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/13/2009 11:50 AM (GMT -6)   
Thanks, Traveler. I'm looking forward to this, but am on my way out and will be sure to go to your link when I get home. Thank you for sharing!

Cajun, I consider my test to be positive. And I will continue to until I have seen my LLMD and learn a valid reason for my antibody reaction. Also, his nurse has assured me that he will know what tests to order.

What did your tests show?
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35706
   Posted 6/13/2009 3:02 PM (GMT -6)   
You're welcome!!! =) =)
- Traveler


Wasgymgirl
New Member


Date Joined Jun 2009
Total Posts : 5
   Posted 6/13/2009 5:53 PM (GMT -6)   
Well i arrived here sbout an hour ago..lyme and co came with me.
im stuck in the chair, i cant move, i wanna drop some weed killer into my IV just to see if it will help get me moving...
Am i in hell or on earth...cant make my mind up..i got lost earlier in my own home!!
Now im stuck, alone..no one to help me up hmmm
maybe i will still be here on monday when i may see someone..maybe my legswill decide t work in a few minutes..gee i hope so. im scared..AGAIN. hearts not happy either, or is it its beating very! fast.

oh and hello im new here..x

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 6/13/2009 6:43 PM (GMT -6)   
THIS IS FUUUUNNNNNYYYY!!!!!!

http://www.youtube.com/watch?v=GuMMfgWhm3g
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs

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