posted
I all, as you may have gathered i'm suffering from just horrible muscluar troubles lately.
I am still on my Mepron/Zith/Bicillin regimen. About 12 weeks in (did Bicillin for signficantly longer before all of this.)
Anyway, I have been having horrible, painful, and violent spasms where my muscles get extremely rigid. I start to convulse like a fish out of water. I have this really spring-like tension in my legs and hands, and all I can do to relieve it is punch pillows and kick madly. (Yes, it's quite a site to see:))
I'm living alone now. So it's really scaring me. LLMD gave me Klonopin for these--- I had a few episodes around xmas-- but they were never this bad and 2mg of the Klonopin always cleared everything up just fine. I would just fall alseep.
The attacks are ususally preceded by extreme bone-chilling cold. It helps a little to take and extra hot bath and right now I'm venturing out to find an electric blanket. Whever I go, I'm FREEZING.
Anyway, last nite I ended up taking 6mg of Klonopin plus 4 Attivan to stop the jerking and everything. Didn't help one bit. I called 911 for the first time in my life and basically just wasted an evening inthe hospital getting lectured by a Duck about excessive antibiotics, and all the super bugs I'm apparently creating inmy body, which is the real cause of my illness.
Duck had never heard of babs, didn't do that lyme releases toxins and causes herx reactions. He called that "extremely unlikely serum sickness." Whatever it is, I need help badly with this rigors/ convulsions.
I got nothing from the doctor. I was hopinh I could get a muscle relaxant like Flexeril or some kind of sedative, Valium??
To top it off, my LLMD is on vacation until the 20th. You can bet I;ll be his first client when he gets home.
Argh. Feeling so, so, down here. Mepron weepies don't help. Thanks, guys.
Posts: 390 | From Oakland, CA | Registered: May 2007
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I know when i was on IV I went into the shivers from freezing and the shaking too. Not as bad as you are noting though. man that has to be tough!!
I wish to warn you to be careful on dosage though we dont want you to take too much trying to pass through an episode. Is there anything you can do to help calm yourself during it?
Candles, calming music, put blankets or towels in the dryer and wrap yourself in them.
I have heard the electric blankets, etc are not the best thing for us. Although I cheat on that one quite a bit myself. But with your level - maybe best not to cheat!!!!
I wish you werent alone......
I wish someone could come and be with you.....
Is there anyone you can call for a day or two???
Please stay in touch here and although we cant physically be with you, we are here!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
Thanks for your reply CJ, Why may I ask are electric blankets bad for us?? I' mjust on my way out to go searching, actually.
My mom is trying to get off work next week to come and help me out-- she lives in Minnesota and I'm out here in Cali so it's hard.
Posts: 390 | From Oakland, CA | Registered: May 2007
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posted
Ellie I have spasms and stiffness all the time. Sometimes I have to hold onto something and just spasm away until it passes. A neuro told me I have spasticity. I don't know if that covers stiffness, spasms, or both. I have rx baclofen but don't take it much. Not sure it helps and one more rx to add to the mix - not good.
I don't know if we have the same thing but I can relate. I am cold all the time too. I thought CA was warm though.
I hope your mother can come stay with you. You need some TLC.
Posts: 262 | From nj | Registered: Dec 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi Ellie, I am so,so sorry that things have gotten so bad. Are you seeing Dr. B or Dr. S or both?
Has either suggested adding magnesium citrate? Magnesium helps muscle/nerve function. The abx you are on can deplete certain vitamins. Vitamin deficiencies can cause serious symptoms.
My pain being so extreme for so long, I studied vitamins to see if I had a deficiency and then asked for testing and it turns out I was critically low on D, which effects calcium and all these are important to a normally functioning body. I had Dr. B run the tests, doctors don't always think of doing this. Also B vitamins - very important, I have found methylcobalamin b12 injections to be helpful (dr. b can order through compound pharmacy).
Potassium deficiency can cause all kinds of problems too, if your electrolytes are out of balance (as mine were at one time too).
Valium, Klon and Ativan are all the same class of drugs, Benzodiazepines (6mg of Klon is huge & I am glad nothing serious became of that) and they can be used as anticonvulsant. Xanax is also in the same class and I have found it the best, even though the others are stronger. Are you on Neurontin or Lyrica? I know Dr. B can recommend something better, possibly anti-seizuer meds, but he is out until the 20th I think, but talk to his assistant and they can ask Dr. G.
I would ask (whomever your LLMD is now) TOMORROW if adding Magnesium citrate would help, or just do it if you think it is ok for you. Demand further testing and let them know you need help now.
I am certianly not a doctor, but it sounds as if you are becoming deficient somewhere and Magnesium is essential to muscle function. Have them test your b12, d, calcium and any other vitamin that can be related in nerve and muscle function.
Sounds like you need some tests done, stay warm and be careful w/the Klon it is very powerful and can be dangerous in large amounts.
ER doctors are worthless! When I once went to ER all the doctor could repeat over and over is "Your doctor prescribed 4 vicodin per day? My God, what doctor does this ..yada, yada, yada... An IV morphine drip wouldn't have touched my pain. They need to learn to shut up and do their job "help people" and stop the lectures. A pain management Md told me I should have reported him to the medical board. We have laws in California that protects a patient in pain called the California Intractable Pain Treatment Act, which ensures people in pain will receive help.
Anyway...consider some study on vitamin deficiencies and trying a different class of anticonvulsant to help in the meantime.
posted
I didnt understand the whole electric thing either but I do know it is common for Bb infected individuals to have issues with electrical things. i.e. electric blankets, heating pads
I have long had issues with electric shocks - shocking people and I mean hard!!! My kids often brace before kissing me becuase it has been like that for so long now.
Maybe do a search in topics and see what you come up with. Maybe someone will come along and answer here more specifically.
How are you doing today????
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I had horrible jerkings where I would have my whole body muscles jerk convulsively and I would jerk into the air if lying down by as much as 2-3 feet. Sometimes I was scared I'd break my back. For me it was not triggered by temperature. I would also get half body jerkings and if walking it would make me fall on the ground.
Mine went away with IV Rocephin but not right away, it took months, 6 months, before I turned-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
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Myoclonus From Wikipedia, the free encyclopedia Jump to: navigation, search Myoclonus
Myoclonus
is brief, involuntary twitching of a muscle or a group of muscles. It describes a medical sign (as opposed to symptom) and, generally, is not a diagnosis of a disease. The myoclonic twitches or jerks are usually caused by sudden muscle contractions; they also can result from brief lapses of contraction. Contractions are called positive myoclonus; relaxations are called negative myoclonus.
The most common time for people to encounter them is while falling asleep (hypnic jerk), but myoclonic jerks are also a sign of a number of neurological disorders. Hiccups are also a kind of myoclonic jerk specifically affecting the diaphragm.
Myoclonic jerks may occur alone or in sequence, in a pattern or without pattern. They may occur infrequently or many times each minute.
Most often, myoclonus is one of several signs in a wide variety of nervous system disorders such as multiple sclerosis, Parkinson's disease, Alzheimer's disease, Subacute sclerosing panencephalitis and Creutzfeldt-Jakob disease and some forms of epilepsy.
In almost all instances in which myoclonus is caused by CNS disease it is preceded by other symptoms; for instance, in CJD it is generally a late-stage clinical feature that appears after the patient has already started to exhibit gross neurological deficits.
Anatomically, myoclonus may originate from lesions of the cortex, subcortex or spinal cord. The presence of myoclonus above the foramen magnum effectively excludes spinal myoclonus, but further localisation relies on further investigation with electromyography (EMG) and electroencephalography (EEG).
Contents [hide] 1 Symptoms 2 Types 3 Cause 4 Pathophysiology 5 Treatment 6 Prognosis 7 See also 8 External links 9 References
[edit] Symptoms Myoclonic seizures can be described as 'jumps'. They are caused by rapid contraction and relaxation of the muscles. People without epilepsy can suffer small but similar jerks in the form of hiccups or brief twitches; these are perfectly normal.
In someone with epilepsy, myoclonic seizures cause abnormal movements on both sides of the body at the same time. In reflex epilepsies, myoclonic seizures can be brought on by flashing lights or other environmental triggers. (See photosensitive epilepsy.)
Familiar examples of normal myoclonus include hiccups and hypnic jerks that some people experience while drifting off to sleep. Severe cases of pathologic myoclonus can distort movement and severely limit a person's ability to sleep, eat, talk, and walk. Myoclonic jerks commonly occur in individuals with epilepsy. The most common types of myoclonus include action, cortical reflex, essential, palatal, progressive myoclonus epilepsy, reticular reflex, sleep, and stimulus-sensitive.
Some persons with sleep myoclonus are rarely troubled by, or need treatment for, the condition. However, myoclonus may be a symptom in more complex and disturbing sleep disorders, such as restless legs syndrome, and may require treatment by a doctor.
[edit] Cause Myoclonus may develop in response to infection, head or spinal cord injury, stroke, brain tumors, kidney or liver failure, lipid storage disease, chemical or drug poisoning, or other disorders.
Benign myoclonic movements are commonly seen during the induction of general anesthesia with intravenous medications such as etomidate and propofol. These are postulated to result from decreased inhibitory signaling from cranial neurons.
Prolonged oxygen deprivation to the brain, called hypoxia, may result in posthypoxic myoclonus. Myoclonus can occur by itself, but most often it is one of several symptoms associated with a wide variety of nervous system disorders. For example, myoclonic jerking may develop in patients with multiple sclerosis, Parkinson's disease, Alzheimer's disease, or Creutzfeldt-Jakob disease or Lupus. Myoclonic jerks commonly occur in persons with epilepsy, a disorder in which the electrical activity in the brain becomes disordered leading to seizures.
[edit] Pathophysiology
Although some cases of myoclonus are caused by an injury to the peripheral nerves, most myoclonus is caused by a disturbance of the central nervous system. Studies suggest that several locations in the brain are involved in myoclonus. One such location, for example, is in the brainstem close to structures that are responsible for the startle response, an automatic reaction to an unexpected stimulus involving rapid muscle contraction.
The specific mechanisms underlying myoclonus are not yet fully understood. Scientists believe that some types of stimulus-sensitive myoclonus may involve overexcitability of the parts of the brain that control movement. These parts are interconnected in a series of feedback loops called motor pathways. These pathways facilitate and modulate communication between the brain and muscles. Key elements of this communication are chemicals known as neurotransmitters, which carry messages from one nerve cell, or neuron, to another. Neurotransmitters are released by neurons and attach themselves to receptors on parts of neighboring cells. Some neurotransmitters may make the receiving cell more sensitive, while others tend to make the receiving cell less sensitive. Laboratory studies suggest that an imbalance between these chemicals may underlie myoclonus.
Some researchers speculate that abnormalities or deficiencies in the receptors for certain neurotransmitters may contribute to some forms of myoclonus.
Receptors that appear to be related to myoclonus include those for two important inhibitory neurotransmitters: serotonin, which constricts blood vessels and brings on sleep, and gamma-aminobutyric acid (GABA), which helps the brain maintain muscle control.
Other receptors with links to myoclonus include those for opiates, drugs that induce sleep, and for glycine, an inhibitory neurotransmitter that is important for the control of motor and sensory functions in the spinal cord. More research is needed to determine how these receptor abnormalities cause or contribute to myoclonus.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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posted
p.s. Myoclonus can be caused by oxygen deprivation which babesiosis does- and you are on treatment for Babs so this could be a herx-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymednva
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Member # 9098
posted
You may want to read some of the posts written by seibertneurolyme regarding her hubby's battle with this.
You can click on her name in the post and it will take you to her profile. Then click on "view posts" to see what she has written.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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tailz
Unregistered
posted
Unfortunately I was not able to view this video on my computer, but are your seizure-like episodes anything like this??? Let me know if it's any good.
I spent 15 years on Klonopin. I discontinued it because, though it was the only thing that ever helped, I got kind of tired of being treated like a drug-seeking addict, especially when I was already being treated like an anorexic sleez.
I cold-turkeyed it on my own, and now I have nerve damage. I'm still trying to figure out why I always manage to pay for everybody else's screw ups. At least I'll die with some dignity now - I certainly didn't feel much dignity reading through my medical records.
In fact, even if you think your doctor likes you, I highly recommend you request copies of your medical records - some of what I found in there was surprising. If I had known that's what doctors write about patients I would have stopped seeing them decades ago.
In fact, next time your records are sitting out, pick them up and read through them - they're your records, right? Notice how quickly the receptionist will pull them away from you like they are some kind of big secret. Try doing that in front of a doctor then.
Sorry - off on a tangent again, but I'm really irked today. My doctors ruined my life - they honestly did.
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canbravelyme
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Member # 9785
posted
Could someone describe "muscle rigors" for me?
xxoo
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Ellie, after 30 months of similar symptoms as yours, my husband asked my LLMD to put me on levaquin for bart.
We did low-dose, 4 days a week, 3 weeks a month for 8 months.
My seizure-like symptoms, spasms, and jerking have all but disappeared.
I still have diaphragm spasms sometimes but I'm not contorting, falling off the bed, etc. anymore.
I went to the ER many times during that 30 months and was treated like dirt.
Magnesium deficiency was also a problem - supplementation can really help.
So, for me, bartonella treatment was the way out.
Best to you - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Sounds like Levaquin has worked for several people with these type of syptoms.
Hmmm something to consider. I've been debating whether to try the dreaded Levaquin. The side effects scare me.
Posts: 262 | From nj | Registered: Dec 2007
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