Just putting this out here to see if Lyme can present as severe muscle spasms only in upper back and in neck - I have these spasms all the time, but way worse when I'm sick; I was diagnosed with spasmodic retrocolis/cervical dystonia, yet I don't fit that picture when one adds in all my other bizarre symptoms. Seen 4 neurologists - all clueless.
I have recurring flu-like 'attacks' and during this time the spasms become very bad; and I get very ill; these attacks can occur every week, every 2 weeks, every 3 weeks, over and over...the longest was 6 weeks (which is rare, unfortunately); the attacks last about 3 days - the shortest has been 2 days, the longest 5 (which is rare, fortunately); sometimes I can tell exactly when an attack ends..to the minute. Often the attacks start early in the morning when I'm asleep, then I wake up sick. Headache, tight neck muscles, tremors, head shake, ringing in the ears, chills then hot - over and over; the illness seems to come in waves - like I can feel it stop and then a few seconds later it starts again - over and over; sometimes my hand/arm muscles just want to curl up; just want to sit and stare at something during this time; when it ends, I'm just fine - like nothing happened; I'm not tired or wore out like the real flu.
Been to numerous doctors since 2005 - nada/nothing. MRIs show nothing; test results negative. Numerous drugs from bp meds, pain killers, anti-seizsure to botox - no help; nothing stops these attacks from coming.
One thing with the muscle spasms in upper back and neck, they can cause severe burning - just from slicing an apple or twisting a lid, if I touch the muscles or massage them or exercise them (had PT until I couldn't take any more due to attacks) or get botox shots in them (had the shots every 3 months for 1.5 years), 2 - 3 days later these muscles 'scream' at me - I get an 'attack' and I am sooo sick - like bothering these muscles precipitates something and I can't even lay down on them the spasms are so bad and I feel horrible. I absolutely dread going to bed - can't sleep I'm so miserable and the muscles won't let up.
Can anyone say 'I am so sick of being sick'? And I am so sick of having something that doesn't have a diagnosis! Sigh.
Anyone have my syptoms or know of someone that does? Any suggestions for doctor/treatment?
Thanks for your time and any kind thoughts on this you may wish to send my way. Most appreciative!
Dreading the next attack, Chance
Posts: 6 | From Ft. Collins, Colorado | Registered: Mar 2012
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
In all this time, has anyone checked your Red Blood Cell Magnesium levels? I saw several neuros before I was diagnosed, and not one of them thought to check it. My head and shoulders were covered in spazms. I got rid of mine by doing IV Magnesium and going for trigger point injections (of lidocaine).
Magnesium deficiency = muscle spazms.. And yes it's quite common with Lyme. Particularly the waxing and waning of symptoms. But feeling fine afterward seems a bit odd.
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I see you have posted to find a LLMD and received a few replies. Good.
So, I'll just leave it as a big DITTO to Julie's suggestion that MAGNESIUM deficiency may be to blame.
Magnesium has helped me in so many ways. You might start here:
Natural Calm - Magnesium, Calcium, D3, Boron -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While your symptoms can certainly be from lyme (and lyme can cause magnesium deficiency) . . .
certain food additives can deplete magnesium - or in other ways cause the problems you describe. Best to avoid substances that are "excitotoxic" as the muscle & nerve fibers can become overly reactive.
Excitotoxins; MSG; Aspartame; & "Natural" Flavors -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Chance, yes the "flu-like" attacks can be lyme and the tight muscles are a very common problem for lyme patients. It is so extremely common.
Here is a quote for you and it gives you the remedy also:
"Magnesium deficiency is very often present and quite severe. Hyperreflexia, muscle twitches, myocardial irritability, poor stamina and recurrent tight muscle spasms are clues to this deficiency. Magnesium is predominantly an intracellular ion, so blood level testing is of little value. Oral preparations are acceptable for maintenance, but those with severe deficiencies need additional, parenteral dosing: 1 gram IV or IM at least once a week until neuromuscular irritability has cleared." (page 6)
Lyme disease makes the sufferer deficient in many things, not just magnesium. So, supplements are a big part of treating this illness. I suggest you look at the supplement list near the end of the document and begin taking the ones that apply to you.
Find yourself a true lyme literate doctor to test you for this disease. It will be money well spent.
I had undiagnosed lyme disease for at least 10 years before a doctor thought to test me for it. During the first 5 years I had the disease, it was episodic. For me, I would be "sick" for perhaps 7 months, then well for 5.
I would just wake up one day "sick" and wake up 7 months later well. When I woke up well, I was totally well. I was totally normal. Just as you are describing.
This disease is so unusual that you are afraid to tell people your symptoms thinking they will think you are crazy. The crazier the symptoms, the more likely it is lyme disease. That is what I learned.
I really believe the mag will help you. But, you may need IV. Start with the mag citrate pills and take lots of them, spaced out throughout the day. See if you notice any difference.
I think you have hit on your diagnosis.
Just know that the doc is the key to getting rid of this disease. Can't emphasize that enough.
Here is my post on what makes a doctor a top notch lyme doctor:
Be willing to travel and be willing to pay for expertise.
I got rid of my lyme disease and 2 coinfections 7 years ago and I am living my life and enjoying it. I have the same life I had before lyme disease. I went through 2 other lyme doctors before I found one that knew enough to cure me.
Many doctors treat lyme disease, but only a few know enough to get rid of it for a person.
We will help you here all we can. Let us know how it goes.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- TF (and others) have given you some great information. Also for your research file: --------------------------
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you Lymeinhell, Keebler and TF! Appreciate your time and kind responses and all the great info and links for me to peruse.
I just ordered some Magnesium Taurate and the Natural Vitality Calm plus Calcium. I am definitly going to try this magnesium supplement and see how my muscles respond.
I've had some ILADS docs suggested to me. Sounds like most of these docs are backed up for months! (And they are expensive/don't take insurance).
Thanks again!! I've got a lot of reading and research to do. Will set aside time to persue this site - looks like lots of good info and a lot of knowledgeable/experienced folks post here. Appreciate this site very much.
Thanks again!! Chance
Posts: 6 | From Ft. Collins, Colorado | Registered: Mar 2012
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Yes magnesium deficiency could be part of the problem.
But another possibility is brain inflammation (vasculitis) or hypoperfusion (insufficient oxygen to the brain). Both of these symptoms are common with central nervous system lyme disease. But many neurologists do not know how to diagnose anything besides meningitis when it comes to lyme and tickborne diseases.
If you have not had a brain SPECT scan then I would suggest that test. But for the test to be worthwhile it really needs to be done at Columbia Presbyterian University in New York. They have the experience to read the scans correctly.
Hubby had many episodes of dystonia. His worst episodes ended up in ER visits and hospitalizations due to the severity of the symptoms. He would become basically paralyzed and unable to move and at times unable to speak. Some episodes involved only his upper body from the waist up and other times his full body was involved. IV Ativan was the most common med used but was not really all that effective.
He also had seizure-like spells and usually mental confusion (encephalopathy) with the worst episodes (would not know his own name).
For him I honestly think the vast majority of his seizure-like spells were from bartonella (another Lyme coinfection) but the Parkinsonian tremors and myoclonus and dystonia were in large part due to babesia.
Hubby is not well yet, but has had some remarkable progress. His Parkinsonian tremors finally went away after about 8 years and the seizure-like spells are gone as well.
Hubby did not respond to numerous seizure meds because he was not having true seizures.
Besides the SPECT scan I would suggest a blood slide from Clongen lab. It only costs $195 and will show if bacteremia is an issue or might show babesia. The bloodslide is not listed as an option on the order form. It is a write-in test. Just call the lab for a test kit (costs $50 which includes the prepaid mailer) and then find a doc who will order the test. I think it is a great starting point to testing. It is not a lyme test, but is looking for other potential coinfections.
Good luck and keep us informed.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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The hot then cold symptoms sound a lot like babesia to me. Is your routine bloodwork normal or are there any out of balance numbers such as possibility elevated bilirubin or low red or white blood counts?
Hubby's worst dystonia attacks that ended up in the ER and hospital almost always started with him not waking up normally in the morning. I would try all the tricks I learned over the years to try to stop the attacks but if it lasted longer than a couple of hours it was off to the ER. And it would take hours or a few times days to bring him out of the spells.
Hubby also had major nausea/dry heaves with these episodes.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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