I had had lyme disease for 23 years; got first diagnosis in 2005, treated, and then in late 2009 had relapse and neuro symptoms.
I am having very uncomfortable and distressing muscle spasms/contractions/involuntary movements mostly in my neck and face though I can twitch everywhere. I have been to many neurologists, they are stumped. In April of this year, after many "equivocal" test results, I tested IGM positive for Lyme. I am seeing an LLMD and am currently on IV Rocephin (since Wednesday).
I wonder if this symptom will ever go away. Does it go away after treatment with antibiotics? I am also taking flagyl.
As per supplements I am taking lots of magnesium (1200/day + transdermal), vitamin B, etc. etc. the past few days have been worse.
My other symptoms have subsided for now (since I went on oral antibiotics in February 2010).
These spasms can be so severe that it becomes disabling for me....does anybody have advice or experience that might help?
Blessings to you all- Posts: 172 | From ohio | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- Do you need a new pillow? A new pillow support for under your knees when you sleep?
What about calcium levels? With increased magnesium, that also needs to be brought into balance and can have similar effects of calming muscle spasms. Zinc, potassium . . . all mineral and electrolyte balance matters, too.
Can you get some professional massage that would focus on myofascial release? Even just good, regular massage can be very effective but you'd need to be sure you have someone very literate regarding the body of a lyme patient.
Cranial-Sacral therapy might also be good. Search the web site for Upledger Institute to find some one trained in this gentle method (never let anyone do a sudden twist of your neck).
Feldenkrais Method might also be good. There are some massage therapists and P.T.s trained in this. Some is hands-on; other is teaching you relaxation and body awareness moves.
Corydalis is mentioned in this thread. That may help: -----------
Thanks for the post. By muscle spasms I mean tremors, like muscle twitching, but the whole muscle is involved...always moving...also my tongue is affected.
It doesn't respond to massage unless the muscles get irritated and twitch even more.
The one symptom I have been spared with Lyme (for the most part-except for dental work) is pain; my spasms aren't painful. They pull and jerk and contract involuntarily and a fast rate, like a tremor/twitch.
Thanks for the advice though! You are a tremendous help to many-
Posts: 172 | From ohio | Registered: Feb 2010
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TF
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posted
Sounds to me like it could be bartonella. Here is what Burrascano says:
"BARTONELLA & ''BARTONELLA-LIKE ORGANISMS''- � Gradual onset of initial illness. � CNS symptoms are out of proportion to the musculoskeletal ones- if a patient has no or minimal joint complaints but is severely encephalopathic (see below), then think of Bartonella/BLO. � Obvious signs of CNS irritability can include muscle twitches, tremors, insomnia, seizures, agitation, anxiety, severe mood swings, outbursts and antisocial behavior. � GI involvement may present as gastritis or abdominal pain (mesenteric adenitis). � Sore soles, especially in the morning. � Tender sub-cutaneous nodules along the extremities, especially outer thigh, shins, and occasionally along the triceps. � Occasional lymphadenopathy. � Morning fevers, usually around 99. Occasionally light sweats are noted. � Elevated vascular endothelial growth factor (VEGF) occurs in a minority, but the degree of elevation correlates with activity of the infection and may be used to monitor treatment. � Rapid response to treatment changes- often symptoms improve within days after antibiotics are begun, but relapses occur also within days if medication is withdrawn early. � May have papular or linear red rashes (like stretch marks that do not always follow skin planes), especially in those with GI involvement"
(from p. 26)
See where it lists muscle tremors and twitches. Have you treated bartonella yet?
Posts: 9931 | From Maryland | Registered: Dec 2007
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Pinelady
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posted
Are you replacing electrolytes? When they let go of the nerves-I believe they do not know how to behave
and need extra support with the supp's. But they must have electrolytes to use them.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Thank you Pinelady, I am replacing electrolytes, taking supplements, minerals, and trying to be as healthy and positive as possible.
I don't know if I have bartonella. I have tested negative and do not have the other symptoms.
Sometimes I wonder if this is not a separate neurological issue or if it is all due to TBD's. My neurologists come up with nothing....the only thing that has come out positive is Bb.
Have others experienced this? Does it get better with treatment? I would appreciate any feedback-the past few days have been very difficult for me as symptoms are worse.
thank you
Posts: 172 | From ohio | Registered: Feb 2010
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TF
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posted
Since the neurologists have come up with nothing (and I am assuming they were very thorough), it then points to TBDs as the cause.
The most likely TBD to cause this is bartonella. I had bartonella and really had no symptoms of it, or, in looking back, perhaps a few episodes of things that could be bartonella.
So, I was surprised to get a positive test for it through Igenex.
So, you can have it and not have symptoms of it--or have extremely minimal symptoms of it.
That is most likely your case. You DO have one listed bart symptom.
The only way to find out for sure is to treat bart for say one month, and see what happens. That should tell the tale. Your symptom is so severe that I would give this a try for sure.
In my experience, over the last 6 years, everyone I know with lyme also has bartonella and babesiosis. So, it is very easy for me to believe that you also have it. I have met many, many people with lyme. It just is the most likely case that you have lyme, babs, and bart.
So, statistically, it all points to treating bart to see if this goes away.
I hope your doc knows that all of these coinfection tests are inadequate (only test for a few strains; meanwhile, there are many strains) and will treat you even though you have a negative test.
Here are a few quotes from Burrascano:
"BARTONELLA-LIKE ORGANISMS It has been said that Bartonella is the most common of all tick-borne pathogens."
"Because standard Bartonella testing, either by serology or PCR, may not pick up this BLO, the blood test is very insensitive. Therefore, the diagnosis is a clinical one, based on the above points. Also, suspect infection with BLO in extensively treated Lyme patients who still are encephalitic, and who never had been treated with a significant course of specific treatment." (page 24)
So, here Dr. B says sto suspect bartonella-like organism if the lyme has been extensively treated and the patient is still encephalitic. I would say that is you. Your twitches and tremors are basically in the head which mean to me you are encephalitic.
You are taking a good amount of mag, so that rules that out.
Of course, if you listed ALL of your symptoms, that could either strengthen the case or not. For example, if you have minimal joint pain and problems, that is another bart symptom (CNS symptoms out of proportion to skeletal/muscular symptoms). etc. etc.
I had undiagnosed lyme disease (and babs and bart) for 10 years. Once I was treated for lyme and both coinfections, I got rid of my disease. It has been 5 years since I completed my lyme treatment and I am still symptom-free, enjoying my life.
ALL of my symptoms went away. That is what I believe can also happen to you. I hope you decide to try the bart treatment. What other alternatives are there? And, what do you have to lose?
Posts: 9931 | From Maryland | Registered: Dec 2007
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IckyTicky
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TF..what is the Bart treatment? What did you do to get rid of everything you had?
My LLMD thinks me and my whole family likely have Bart even though we all tested neg. for it (we have not done Bart testing through IgeneX due to financial reasons.. 5 of us with Lyme it's just too hard)
But because most of our issues are CNS related we think we have Bart. I have muscle twitching all over, and not just a little twitch.. big twitches that cause my arm to move etc, and some of them are long lasting twitches, twitching over and over again. Recently after my parathyroid surgery my whole scalp has started jerking. I have neuropathy really bad in one of my legs, and getting burning sensations in my arms, muscles, etc Myoclonus, tremors.. all of it.
All these symptoms got a lot better after 2.5 years of treatment but I recently went off abx and had the surgery in my neck and now everything has come rushing back. I think it's all more Bart than Lyme.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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TF
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Burrascano on bart treatment:
"The drug of choice to treat BLO is levofloxacin. Levofloxacin is usually never used for Lyme or Babesia, so many patients who have tick-borne diseases, and who have been treated for them but remain ill, may in fact be infected with BLO. Treatment consist of 500 mg daily (may be adjusted based on body weight) for at least one month. Treat for three months or longer in the more ill patient. It has been suggested that levofloxacin may be more effective in treating this infection if a proton pump inhibitor is added in standard doses.
Another subtlety is that certain antibiotic combinations seem to inhibit the action of levofloxacin, while others seem to be neutral. I advise against using an erythromycin-like drug, as clinically such patients do poorly. On the other hand, combinations with cephalosporins, penicillins and tetracyclines are okay. Alternatives to levofloxacin include rifampin, gentamicin and possibly streptomycin.
A very recent article suggests that prior use of quinine-like drugs including atovaquone (Mepron, Malarone) may render Levaquin less effective. Therefore, in a co-infected patient, treat the BLO before you address Babesia species." (pages 24-25)
My lyme doc got rid of bart for me with one month of Levaquin (levofloxacin).
Then he went on to treat babs with Bactrim DS which also kills bart. So, that was my bart treatment.
I will send you my entire treatment by private message.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
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posted
And, by the way, you must take magnesium at least 4 HOURS AWAY from the levaquin. Otherwise, it inhibits the absorption of the levaquin.
Here is a link regarding bartonella treatment. It also says to take the mag at least 4 hours away from the levaquin and the same for calcium, zinc, and iron!!!:
posted
I began treatment for lyme in Feb 2010; I just had a catheter inserted this past Wednesday, for my first ever treatment with Rocephin. I will be seeing my LLMD at the end of the month and if symptoms persist, will ask about levaquin.
However...aren't muscle spasmps and twitching also a symptom of Lyme? It gets very confusing trying to sort it all out....if anybody has additional experience with this...any and all ideas appreciated. Thanks TF and Icky Ticky..and to all on this forum!
Posts: 172 | From ohio | Registered: Feb 2010
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IckyTicky
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Sorry TF.. my mailbox has never been full before? I'll delete some now Dali, I think that sometimes muscle spasms and twitching CAN be Lyme.. but I tend to think it's more likely co-infection related.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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TF
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Dali,
Suggest you pull up the Burrascano document and start reading at page 25, the section entitled "Sorting Out the Coinfections."
That section tells you what is a lyme symptom, what is babs, what is bart, what is ehrlichia.
According to Burrascano, twitching is either a magnesium deficiency or bartonella. It is not a lyme symptom.
Since nearly everyone has lyme and babs and bart, they tend to think of all of their symptoms as lyme symptoms, but that is not the case.
AND, as Burrascano says over and over, you cannot recover from lyme if you do not also treat every coinfection you have. I was living proof of that.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Will do. Thanks alot. All input is greatly appreciated. I'll follow up if I get any results with treatments.
Posts: 172 | From ohio | Registered: Feb 2010
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sparkle7
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I don't have this symptom but I though that trying cold packs may help. Or alternating heat & cold. Just something that popped into my head when I read this.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Cold and hot packs do not help for this, sparkle 7; it would be nice, though. Xanax and benzos can help short-term but they are highly addictive. I have increased my magnesium intake and am drinking an interesting tonic called "Neuronectar" that I found at the organic supermarket; has high dosis of B vitamins and other good stuff for the nervous system. It seems to take the edge off the spasms/twitches/tremors-not curative as it seems like these are not only due to deficiencies but are linked to the disease process itself. I am trying to load my body up with nutrients to give it the tools it needs to self-regulate. I slept well last night and I would say that symptoms have gone from "extremely uncomfortable" to 'uncomfortable"...and I am thrilled with that.
If anybody else has success with these symptoms please share!!!! Thanks ...
Posts: 172 | From ohio | Registered: Feb 2010
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sparkle7
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posted
Maybe this product would help?
(They sell it on line at most big vitamin websites. I don't get any commissions, etc.)
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