I've got a large number of symptoms that correlate to Lyme Disease, in conjunction with a very large history of exposure to ticks in the two most Lyme prevalent states in the Midwest.
At any rate, I'm at the point now where I'll be getting bloodwork done for testing for Lyme tomorrow, as well as getting an MRI, but today I'm in one hell of state where I'm concerned about working tomorrow (but have already take an few days worth of time off this past week or two) and I'm concerned about sleeping tonight.
Basically, my condition has worsened to the point where when I sit still or lie down for even 5 minutes, I often loose sense and function of 1 or more limbs.
This temporary partial paralysis started 3 or 4 nights ago with 1 paralyzed leg (left), and only occurred once. Today, not even a week later, I've had this occur on up to 3 limbs (two left, plus right leg), plus the torso.
So, basically I was fixed in my chair (where I was when it started) with my hand still holding the the bottle of Gatorade I had physically removed from it with my right hand about 1 hour previous.
To top this off, I'm getting major muscle spasms, all over, but largely concentrated to the mid-section.
Even better, I'm getting phantom taste in my mouth every ~30 seconds that tastes somewhere between grape and deviled eggs.
I'm right now reaching my threshold as to how much I can take. I don't know if I can honestly handle another night and day of this madness, only to go through 3-4 hours of testing and wait another 2-3 days for results.
I mean, if it's progressing this rate, will I be able to move anything at any time by the time they get the results back? And what about treatment, how long before this madness comes to a complete end, or at least a turning point?
I was seriously at the point of wishing my wife would just take me to the ER and demand I be hospitalized and treated for whatever it is NOW.
I need advise from you guys right now, what should I do at this juncture?
Should I just "tough it out" a few more days till I get results back? Should I rush to the ER? Other?
Granted, mobility has spontaneously returned for the short-term, but I know when I lie down tonight I will once again loose mobility, and I wouldn't be surprised if I loose all 4 limbs and my torso. I'd be quite frankly glad if I can still talk well enough to complain about it to my wife.
Dan
Posts: 9 | From Rockford, IL, USA | Registered: Mar 2009
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posted
What did your dr. say? The test can be inaccurate so not sure if you can just say you had a bull's eye rash and get started on antibiotics?
You can try the ER but I wouldn't mention the Lyme. You will be treated like a leper and get false information anyhow. You have to find a lyme dr. I know there is one in MO. Can some old timers chime in here? So sorry you are going through this!
Take Care, Ann
-------------------- If you keep doing nothing...nothing changes!
my NON-medical opinion is have your wife take you to ER now if you have lost the use of 1 side of your body; could be a stroke or heart attack! i wouldn't wait; more damage could be done by waiting. **************************************
1st, have you called your PRIMARY DR? ER?
"This temporary partial paralysis started 3 or 4 nights ago with 1 paralyzed leg (left), and only occurred once.
Today, not even a week later, I've had this occur on up to 3 limbs (two left, plus right leg), plus the torso.
was seriously at the point of wishing my wife would just take me to the ER and demand I be hospitalized and treated for whatever it is NOW".
my NON-medical opinion is have your wife take you to ER now if you have lost the use of 1 side of your body; could be a stroke or heart attack! i wouldn't wait; more damage could be done by waiting.
dan, you need WESTERN BLOT IGM AND IGG blood drawn and sent ONLY TO
they have a REQUIRED form to complete, dr. must sign, date, and show diagnosis code why it's being drawn for $$ reimbursement from your health insurance co.
$200 prepay! unless you are on medicare; then free; igenex does paperwork.
i'll attach my welcome and after that; LYME & CO-INFECTION SYMPTOMS LISTS!
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
MELANIE REBER'S 186 LIST OF SYMPTOMS BY REGION AREA:
The Bite 1. Tick, mosquito, flea, deerfly, or horsefly bite 2. Rash at bite site 3. Rashes at other sites 4. Rash basically circular and spreading 5. Raised rash, disappearing and returning (Note: EM rash appears in less than 50% of lyme patients and MANY never recall a bite)
Head, Face, Neck 12. Unexplained hair loss 13. Scalp rash 14. Headache, mild or severe 15. Migraine 16. Twitching of the face or other muscles 17. Facial paralysis (Bell's Palsy) 18. Tingling or numbness of nose, cheek, or face 19. Facial pain 20. Facial swelling 21. Dental Pain 22. TMJ (jaw pain) 23. Sore throat 24. Hoarseness or weak voice 25. Vocal paralysis 26. Difficulty swallowing 27. Loss of smell or taste 28. Neck Stiffness, pain, or pressure
Eyes/ Vision 29. Swelling around eyes 30. Photophobia or light sensitivity 31. Double or blurry vision 32. Increased floating spots 33. Pain or swelling in eyes 34. Flashing lights 35. Tearing and/ or dry eyes 36. Vision loss or blindness 37. Dilated Pupils 38. Conjunctivitis 39. Uveitis 40. Iritis 41. Decreased perception of light and color 42. Decreased depth perception 43. Wandering or lazy eye 44. Drooping eyelid 45. Foreign body sensation
Ears/ Hearing 46. Ear pain 47. Sound sensitivity 48. Buzzing in one or both ears 49. Ringing in one or both ears 50. Decreased hearing in one or both ears
Digestive and Excretory Systems 51. Constipation 52. Diarrhea 53. Irritable bladder (trouble stopping or starting) 54. Frequent urination 55. Kidney failure 56. Splenitis 57. Nausea or vomiting 58. Gastritis or upset stomach 59. Abdominal cramping, pain 60. Abdominal paralysis 61. Bloating 62. Gastro esophageal reflux 63. Difficulty eating
Musculoskeletal System 64. Joint pain or swelling 65. Stiffness of the joints, neck, or back 66. Tendonitis 67. Muscle pain or cramps 68. Joint creeks and cracks 69. Neck and shoulder pain 70. Heal and foot pain (plantar fasciitis) 71. Spinal sensitivity 72. Herniated disk 73. Back pain 74. Bone pain or erosion 75. Shin splints 76. Cartilage erosion 77. Cervical pain 78. Gangleon Cysts 79. Migrating pain 80. Carpel Tunnel Syndrome
Respiratory and circulatory Systems 81. Shortness of breath 82. Persistent cough 83. Sleep Apnea 84. Chest pain or rib soreness 85. Vasculitis 86. Frequent and easy bruising 87. Unexplained fevers, sweats, chills, or flushing 88. Heart palpitations or extra beats 89. Any history of a heart murmur, heart block, or valve prolapse 90. Heart attack 91. Pulse irregularities
Neurological System 92. Tremors or unexplained shaking 93. Burning or stabbing sensations 94. Weakness or partial paralysis 95. Pressure in head 96. Aneurysm 97. Coma 98. Cranial nerve abnormalities 99. Dementia or Alzheimer's-like presentation 100. Multiple sclerosis-like presentation 101. Meningitis 102. Pseudotumor cerebri 103. Tingling, numbness, or shooting pains 104. Dizziness, lightheadedness, wooziness 105. Fainting 106. Difficulty walking 107. Increased motion sickness, vertigo, poor balance 108. Seizure activity 109. Stroke symptoms 110. Restless leg syndrome 111. Diminished Reflexes 112. Gait problems 113. Clumsiness, dropping things or bumping into objects
Psychological/ Well-being 114. Mood swings 115. Irritability or low frustration tolerance 116. Depression 117. Feeling as if you are losing your mind 118. Overemotional reactions, crying or becoming enraged easily 119. Hypersensitivity 120. Inappropriate laughter 121. Poor judgment 122. Restlessness 123. Easily distracted 124. Apathy, listlessness, or lack of motivation 125. Insomnia. Disturbed sleep, early awakening 126. Panic attacks or panic disorder 127. Anxiety 128. Obsessive-compulsive behaviors 129. Bi-Polar presentations 130. Hyperactivity 131. Suicidal thoughts 132. Paranoia 133. Personality changes 134. Hallucinations- auditory, visual, or olfactory 135. Nightmares or night terrors 136. Eating disorders 137. Schizophrenia-like disorder
Mental Capabilities 138. Brain fog 139. Memory loss (short or long term) 140. Confusion 141. Forgetfulness 142. Cognitive overload 143. Loss of creativity 144. Declining school performance 145. ADD 146. Difficulty concentrating, thinking or reading 147. Tendencies to go off on conversational tangents 148. Difficulty with speech (slow, stammering, or slurred) 149. Word reversals when speaking 150. Difficulty with writing (number and letter reversals) 151. Word finding difficulty 152. Facial recognition difficulties 153. Slowed or inconsistent processing skills- planning, prioritizing, sequencing, or tracking 154. Difficulties with calculations and directions 155. Difficulties with multi-tasking 156. Difficulties completing tasks or meeting deadlines 157. Disorientation: getting lost, going to the wrong place, forgetting your destination 158. Forgetting how to perform simple tasks 159. Orientation difficulties (up-down, left-right) 160. Poor spatial judgment
Reproduction and Sexuality 161. Sexual dysfunction or loss of libido 162. Unexplained menstrual irregularity, pelvic pain 163. Unexplained milk production, breast pain 164. Testicular pain/pelvic pain
General Well-being 165. Unexplained weight change-loss or gain 166. Extreme fatigue 167. Swollen glands 168. Cystitis or nodules under the skin 169. Unexplained high or low-grade fever or hypothermia 170. Continual infections (sinus, kidneys, eyes, etc.) 171. Symptoms seem to change, come and go 172. Pain migrates to different parts of body 173. Early flu-like illness from which you have never fully recovered 174. Increased Thirst 175. Profuse Sweating 176. Achiness 177. Lethargy 178. Malaise 179. Itching 180. Autoimmune presentations 181. Increased sensitivity to allergens, chemicals, or odors 182. Difficulties with Sensory overload 183. Exaggerated symptoms or worse hangover from alcohol 184. Fatigue, tiredness, poor stamina
I compiled this list from many different sources... Please feel free to list any of your symptoms that I may have overlooked and I will add them in, OK? ------------------ C O L O R A D O * S U P P O R T * S Y S T E M [email protected]
I would add autoimmune manifestations. Many people experience an autoimmune response to the infection (positive ANA, severe allergies).
For the most detailed list available on the 'net, see the Symptoms document at:
www.lymeinfo.net/lymefiles.html It also has citations and quotes from medical so it's more credible for sharing with non-LL doctors than just a straight list would be.
I would like to add Uveitis and Iritis to your list of eye symptoms. I've had both, they are much more painful than photophobia. Feels like someone is stabbing your eye with an ice pick!
add: irritable BOWEL syndrome; bladder was there but not bowel.
The "short" list!
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol --------------------
Common symptoms of bartonellosis include:
___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)
___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"
___Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature
___Headaches, especially frontal (often confused with sinus) or on top of head
___Eye symptoms including episodes of blurred vision, red eyes, dry eyes
___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)
___Sore throats (recurring)
___Swollen glands, especially neck and under arms
___Anxiety and worry attacks; others perceive as "very anxious"
___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature
___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)
___Muscle pains especially the calves; may be twitching and cramping also
___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)
___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.
___Tremors and/or muscle twitching
___Heart palpitations and strange chest pains
___Episodes of breathlessness
___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins
___Gastrointestinal symptoms, abdominal pain and acid reflux
___Shin bone pain and tenderness
Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever."
Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats).
Bartonella can also be transmitted by ticks that transmit Lyme Disease.
In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.
It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is "Bartonella-Like Organism" (BLO) that is yet to be fully identified.
While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Bel....
If you are losing function at that fast of a rate I would call your doctor immediately.. even the ER docs for whomever is on duty... and ask them what to do.
If you can't reach them I would pack my bags and go in tonight.
If those tests have been ordered someone thinks you need help and probably doesn't expect you to digress this quickly.
I am concerned for your diaphram/chest wall muscles... and the ability to breath at this point.
I vote go. Please do.
And when you get home please know we are worried about you and want to know how you are doing. OK?
PS.. I am NOT a doctor and this is not medical advise.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
BG..
Can you edit your post and tell Bel... right off the bat first thing... that before he reads your thoughtful information to go to the hospital?
I feel this could be a true emergency and I wouldn't want him delaying getting help while reading literature he can read later... and not get help right away that he may need.
If I didn't thinnk this was very important, I wouldn't ask.
I have contacted my GP, and had a visit as recently as Friday. This is when I first told him about the loss of the use of my left leg and arm, which, at that point had only occurred 1-3x for each limb.
Long story short, I have been in contact with a Neurologist as recently as 1 week, my GP about 4x over the past month, and since I've been labeled as bi-polar for the past 8 years, a psych, as recently as 4 weeks ago.
I have also had 1 visit to the ER as recent as 3 weeks ago, for severe chronic muscle spams.
Am right now prescribed by my neuro for Bacoflen and Zanaflex, as well as the long-standing Abilify for mood-swings by the psych.
GP has ordered an MRI o lower-spine, Nuero ordered one on Neck, will get at least the neck done tomorrow, hopefully blood-work to get checked for Lyme as well tomorrow.
But that's tomorrow, tonight I deal with severe muscle spasms as well as temporary partial paralysis of multiple limbs while I attempt to achieve somewhere near the 4-5 hours of sleep I've been getting for the past month or so. Only thing getting me to sleep is the Zanaflex, nothing is keeping me asleep for more than 2-3 hours at a time though, except the valium I got at the ER 3 weeks ago, but that nice 10hr sleep declined to 2 hours within a week.
I'm just lost, should I really visit an ER tonight?
The problem is, the functionality of the limbs returns without reason or rhyme, but primarily once I physically get it moving, although it often returns as soon as I sit down or especially lie down for more than 5 minutes.
IE, if I visit the ER, they'll likely "see" nothing wrong.
One other symptom I have that is worrisome, was at the GP, nurse took temp, read 94.5F, and she wasn't the least bit concerned, and GP didn't notice, and I forgot about the oddity because of all the other "crap" I had been seeing him about.
Thanks, Dan O.
Posts: 9 | From Rockford, IL, USA | Registered: Mar 2009
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Belboz, please listen to Tincup's advice.
She's had years of experience and is pretty reserved, especially when people are contemplating going to the ER.
She doesn't usually tell people to go to the ER.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
I don't know what to say. The ER would be a good idea if you're having trouble breathing and if the paralysis is on one side as in stroke.
That said, please realize that the test for lyme you just had will very likely come back falsely negative. Be sure to get a Western Blot from Igenex, as betty indicated. It is the best.
welcome and keep us posted!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
We have a couple other members who have experienced what you are, including whole or partial body paralysis that has lasted for hours or days.
It has always resolved, and is from late stage neuro lyme, but is terrifying and always needs to be checked out emergently.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Please give us an update when you can.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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quote:Originally posted by Belboz99: Going to ER now, wifey is driving. Wish me luck. [/QB]
good! keep us posted!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I was afraid to look.. but it appears he has listened.
Thank goodness!
I.. or we.. could be wrong.. but I lost a relative to this Lyme related problem.. and have seen it turn severe in others... and don't want to chance it happening again to anyone.
If limbs are paralyzed and unusable.. the diaphram could be involved also.
Thanks for taking this seriously.. and h... you are right...
I will rarely tell anyone to go to the ER... I HATE THOSE PLACES!
But sometimes you gotta do what you gotta do.
Now I will pray... for two reasons....
1. That he is ok.
2. He doesn't kick my butt for making him go to the ER.
posted
This his wife here. Luckily the ER had him down as "urgent" but the first doctor that came in took one look at the fact that he has been diagnosed with bi-polar and thought he was crazy. I mentioned the fact that he has had a tick bite, and the doctor pulls the "It is not that, the symtoms are all wrong. I've been to [insert third world country here] and have never come across a Lyme Disease situation like this" crap. At any rate, they did take some CT scans, X-rays, and blood tests. They admitted him around midnight, and we should know the test results in the morning. The big downside of the ER trip was when they hooked him up to Benedryl, he had severe reactions. He doesn't take well to stimulates. He started convulsing intermittently, and one time his breathing stopped for about 5-10 seconds (labeled "apnea" on the monitors). I called the nurses twice, and by the time they got there, he would be fine. So they go, "it is just tremors" and walk away. Very frustrating. I'm hoping tomorrow morning will go better with some answers. But now I need some sleep.
Posts: 9 | From Rockford, IL, USA | Registered: Mar 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
OMG you poor thing. I HATE how medical professionals put people in a "box" as soon as they see any mention of a mental illness. A mental illness is a physical illness like any other, it just happens to reside in the brain.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Dear Belboz's wife...
Bless your heart. I am so relieved to hear you got him to where they are SUPPOSE to help.. but very sorry you are getting the ER IDIOT run around.
And sorry about the benedryl reaction. That had to be horrible to watch for you.. and hard for him to endure.
Hang in there please. We are praying for you and your husband.
I can't tell you how glad I am to have an update. Thanks so much for taking time to write to us.
I hope you can get some sleep and hope that both of you are doing better real soon and will have some answers.
We will look forward to hearing from either of you when you have a chance.
Hugs to you both.... and good luck in the duck motel!!
posted
Hey, wifey again. Thanks so much for all the warm wishes. I can tell you right now that although there is no conclusive information that I know of yet, the neurologist that he saw this morning actually listens to him describe his symptoms. The neuro thinks that it may be chemically induced as he works with chemicals at a photo lab all the time, but it is still remains to be seen. I can tell you right now that when I see the doctor, I'm going to tell him point-blank to run every possible tests, no matter how obscure it may be, to make sure nothing is over looked. I may have to take out a credit card to pay for it, but I think it is well worth it to have the peace of mind that maybe something will come of this. Thanks for listening. I'll send him your blessings.
Posts: 9 | From Rockford, IL, USA | Registered: Mar 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So nice to hear some news. I checked back earlier and there was none. Thanks for taking time to reply.
And at least ONE doctor is listening. That's pretty amazing in itself!
Please get some rest.. you poor dear. You must be exhausted!
And let us know how you all are doing... when you have time.
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Mr. & Mrs. Belboz,
Welcome to Lymenet! I'm sorry you're having such problems.
This is a great supportive community.
I'm glad you're being taken seriously. Hope you get some answers this morning. Keep us posted.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
I've been discharged from the hospital as-of 12:00 Noon today. After dropping off a couple RX's to the Pharm, I headed straight home, whee I then headed straight to bed and slept for 2 hours.
Wifey has been a big help and a blessing in all of this of course.
Neuro says it might be some kind of long-term chemical build-up in the brain that's causing these problems, and some of the problems were further exacerbated by adding more med's like "Baclofen and Zanalfex" which just seemed to add even more problems, or worsen existing ones.
Right now I'm still in a daze. I had 2 hours of sleep on Saturday afternoon, but other than that it was 06:00 Saturday until 02:00 on Monday morning before they finally complied and gave me some sleep meds (which lasted only 4 hours.
In the grand scheme of things, I've had roughly a total of one night's rest since 6:00 AM Saturday, and it's now Wednesday at 3:40.
Besides the total daze, there's a lot of other issues I'm still dealing with, but doc said it might take a week or two to balance out those chem's in the brain.
The very last thing we did there as a patient was get blood tested for Lyme. Why was this done last? The first doctor I saw was a total Asshat, and simply because I had a history of bi-polar said I had "conjured up" these symptoms.
That was actually the only general doctor I saw until 2 hours before I was let out the door, a full 2.5 days later. He was originally scheduled to see me on Monday, but instead spent 20 minutes talking to my also biased and forgetful mother and then never talked to me.
Here's the odd part about the actual symptoms, they're basically seizures, with some key differences. Most importantly, I'm fully conscious throughout the ordeal. Secondly, not all of my limbs will "seize" at the same time.
To give some brief description of these symptoms, I'd be just sitting / lying there and start feeling a cold, bubbly / tingly sensation around my sternum. Within 10 seconds the muscle contractions would start going, and generally increase in severity until I'd arch backwards with my feet and head on the bed and nothing underneath but what felt a good foot or two of air. That position would be held for a good 2-4 seconds, after which I'd drop straight back down on the bed.
After the muscle contractions were over, I'b paralyzed from the head down for a good 5 minutes.
These episodes of contractions and paralysis were often lasting 5 minutes each and I would toggle back and forth between the two states 3-5 time during an episode. I'd have about a 5 minute of somewhat control before another episode, as the episodes generally came in clusters of 3-5. Total cluster duration was usually around 30 minutes to an hour or so. Clusters were spaced around 1-3 hours apart.
Other early indicators besides the tight, bubbly, cold sensation near the sternum, were a spastic left eye which seemed to be twitching at a rate of 10-30hz best estimate. Lots of wavy vision was always another good indicator, or an overall tightening, burning of the chest area.
Well, I've type too much, I'll be in touch. My father used to be the lab manager at that hospital and from what I gather the results need to be sent out.
Thanks all, Dan
Posts: 9 | From Rockford, IL, USA | Registered: Mar 2009
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posted
Me again, Forgot to mention that my temp. was at 94.3 today, also, but the doctors just shrugged it off saying that it was a side-effect of the meds.
Posts: 9 | From Rockford, IL, USA | Registered: Mar 2009
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Thanks for the update. Glad you're home too.
Please get a Lyme literate medical doctor as soon as possible.
My daughter developed a seizure-like movement disorder, probably from Lyme or Bartonella in the deep part of the brain. She gets a weird sensation in her belly, then her hips lock up, and her arms contort weirdly. Her head and neck also pull strongly to one side. It doesn't last very long...maybe 15 seconds.
She is fully awake during these events, but cannot talk well. Her speech is garbled since her tongue pulls to the side too. He eyes also turn up and out like she's trying to see something on her temple.
These seizure-like events won't show up on an EEG, because an EEG only measures the outer part of the brain. My daughter had a 48 hour video monitored EEG. It revealed areas of "cortical irritability." Those are electrical seizures that do not turn into seizures you can see physically...only on the EEG. She didn't have one of these events while doing the EEG, so who knows what might have seen.
Lyme and coinfections cause many weird things!
You may want to do some research on the symptoms of Bartonella and the various Bartonella rashes.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hope you are doing better. Wanted to check on you real quick before I am off for a bit.
posted
dan, thanks for the update! best wishes hugs/kisses
wow, no sleep big time! i've told people i haven't slept in 30-35 years!! NO delta 4 sleep where i wake up feeing refreshed and my body doesn't heel which is so important.
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ![[Big Grin]](biggrin.gif)
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