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Nocturnal Myoclonus (Periodic limb and muscle movements at sleep onset)

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Posted 8/21/2011 9:57 PM (GMT 0)

I have not been diagnosed with lyme at the present time but am looking into possibly having my doctor in Fl. order the Igenex Lyme test. I was tested (unreliable western blot-Quest Lab)  a few months ago and it came back negative. I have been suffering with symptoms for almost five years and spent a fortune in $$ seeing doctors who were clueless as I suffered beyond belief with sleep disorders, food/chemical hypersensitivies, and worsening GI problems (I had a GI disorder diagnosed many years ago). I have spent thousands of hours conducting personal research to narrow down my diagnosis to either a metabolic disorder or Lyme (or a co-infection). I had an infectious disease doc order a battery of labs a few months ago (Labcorp) including Bartonella, Babesia, Rocky Mountain Spotted fever,  and Ehrlich. The results were all negative. Of course, I know there are many other co-infection possibilities to rule out such as mycoplasmas and toxi.

I was wondering if anyone in this group suffers from (or suffered from) intolerance to salicylates (foods, cosmetic products and chemicals), periodic limb movement (nocturnal myoclonus) ONLY at sleep onset, including involuntary muscles jumping when trying to go to sleep. 

If so, what infections did you have and were you able to eradicate the bacteria.

Thank you for sharing your story with me as I am so incredibly frustrated. This has nearly runied my life and I want to get my life back asap.

Thanks a million.

Siesta :)

Posted 8/21/2011 10:17 PM (GMT 0)
I use to have a lot trouble with sleep (falling asleep, staying asleep, staying awake during the day). I always thought it was that my body wouldn't settle down that prevented me from falling asleep or that it would wake me up. Have you been tested for sleep apnea? After finding out that was the problem - at least one of them (still have issues falling asleep) - I got surgery (couldn't tolerate the mask) and have gotten more/better sleep. It might be something to look into if you haven't.
Posted 8/21/2011 10:53 PM (GMT 0)

I have been tested for everything under the sun, except the proper test for Lyme. I do not have apnea. I have severe salicylate intolerance, which I developed in 2006. After seeing approx. 20 physicians during the next three years, I self diagnosed myself through keeping personal diary and had an allergist concur with me on my diagnosis. There is no test for salicylate intolerance; only diet elimination. I react to foods moderate to high in sals, as well as chemicals with a sals deriviative (i.e. anything scented or containing natural sals such as citrus).  As a sals intolerant patient, it is common to develop MCS, when removing the offending substances from your diet and environment. I cannot be near anyone with fabric softener on them, products containing benzoates, colognes, alcohol-cosmetic products, anti bacterial wipes, etc. It feels like I am swallowing chemicals! 

Sals intolerance can be genetic and I know there is a family history (although I did not know until after I made my discovery). The symptoms of sals intolerance are very similar to Lyme. However, I need to rule out Lyme to make sure that it has not triggered a more severe form of this genetic condition. Salicylates or other toxins can inhibit/block the electron transport (mitochondria), thereby causing mitochondrial dysfunction. Lyme can also cause mitochondrial dysfunction. Mito can cause seizures and myoclonus.

I hate spending the $$$ on another test but I guess as usual, I have to be my own advocate and push for what I need, so I can get my life back.

Posted 8/21/2011 11:02 PM (GMT 0)
Lymester,

My nocturnal myoclonus symptoms were horrific back in 2006-2008.  Back then, I was engaging in strenuous exercise and noticed that my symptoms were worsening when exercising.  I was under extreme personal stress so I can believe that it is possible (but not proven) that stress could have played a role in triggering my condition.

I had many other symptoms (as we all can relate) and eneding up having OBGYN surgery as a condition was diagnosed, which required the procedure. I had low ferritin at the time and thought this was probably causing my myoclonus. However, it never went away.

It is improved probably because I take so many supplements and do not over exercise. I am also on an extremely limited diet (low sals, no caffeine, gluten or preservatives). 

My myoclonus symptoms only occur when I am going to sleep (day or night). Some nights are better than others but I know there is something wrong. This is NOT an idiopathic condition...as so many medical professionals would like to brush it off on something else.

I have considered the possibility of hormonal imbalance and even take oral bioidentical progesterone.

There are too many symptoms involved in my scenario that just do not add up. 

Posted 8/21/2011 11:21 PM (GMT 0)
Hi Siesta Key!
Welcome to our forum!! I'm really sorry to hear of all that you've been and now are having to consider the fact that you may have a tick -borne infection!

If you haven't already, it would be beneficial for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of relevant information and informative links that have been put together by our members here! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge!

Unfortunately with tick-borne illnesses, testing is not reliable at all. The tests that have been developed only test for 3 of the 100 strains of Lyme Disease, and only one of the 30 strains of Bartonella, and one of the 20 strains of Babesia (unless they have upgraded the tests very recently, which I doubt). This is why the CDC says and well respected LLMD's (Lyme Literate Medical Doctors) diagnose clinically (by symptoms) rather than rely on blood tests.

It sounds like you are still seeing a GP (I may be wrong), and if you are, you deserve to be seen by a Lyme Disease Specialist - a LLMD (Lyme Literate Medical Doctor).

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:[email protected]

You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
Posted 8/21/2011 11:29 PM (GMT 0)
Thank you for the warm welcome. I have actually already seen many of these websites and am familiar with the unreliability of the testing. I am a member of the Florida Lyme Group and have been chatting with a major advocate in this state about the numerous bacteria's and LLMD's. I am moving to another state soon so will have to wait untl I move and get settled to explore further options. As you know, it is extremely costly to see a LLMD and this may be a problem for me. I am going to pursue the Igenex lab first and some additional co-infection tests (under my insurance).

Thank you again for your support!

:-)  

Posted 8/21/2011 11:33 PM (GMT 0)
Best of luck with your move and finding a LLMD! I am very glad that you are in contact with a support group!! They usually have really great info! Be sure to let us know what you decide to do!
Posted 8/22/2011 3:12 AM (GMT 0)
So sorry to hear of your problems Siesta. Do you have a copy of your lyme WB? Did any bands come back positive? Just wondering because many people just hear negative and don't ask for a copy. I have never heard of the term you refer to but I often have suddden jerking and noises in my brain while trying to fall asleep. I have told my LLMD about the sound in my head like someone plucking a rubberband and it is usually one of the last things I remember before I fall asleep. It used to scare me to death and worry me that I wouldn't wake up. I'm going to look up NP now.
Posted 8/22/2011 6:16 AM (GMT 0)
I used to get this. Discovered iron, zinc, magnesium, and Vitamin B12 deficiency needed to be corrected for this to go away in my case. YMMV.
Posted 8/22/2011 1:38 PM (GMT 0)
I do NOT get sounds in my head...just nocturnal myoclonus  (limb and muscles jumping at sleep onset, day or night).

I have a copies of all my labs from the last five years, including my recent negative WB. I did not test postive for any bands.

I was low in B12 and took B12 shots last Nov nad Dec. However, my diet was so extremely limited due to my reactions to salicylates,it may have caused the folic acid deficiency.

I take numerous vitamins including COQ, Lipoic Acid, Vitamin D3, probiotics, levocarnitine, B complex, mult vit., molybdenum, vitamin C, etc. I also take epsom salt baths for the magnesium as I cannot tolerate oral magnesium.

My doctor may trial me on an intramuscular form of magnesium in the near future. My magnesium labs were showing I was in the low normal range but as I discussed with him that this only indicates what is circulating in the bloodstream. The conventional tests are not a true indicator nor measure the intracellular levels of magnesium.

Posted 8/22/2011 1:42 PM (GMT 0)
Razzle,

Do you have problems with salicylates such as MCS caused by exposure to colognes, fabric softeners, air freshners, cleaning products? Are you super sensitive to medications (most contain preservatives from the sals family)?

Were you able to eliminate your MCS by getting treatment for Lyme?

I also eat gluten free but cannot eat any processed GF foods as they are high in salicylates (i.e. honey, almonds, chocolate, moloasses, spices, etc.)

Posted 8/23/2011 12:04 AM (GMT 0)
nocturnal myoclonus, yup. It fades in and out, there's always at least minor little twitches for me. Last night it was so bad I only got 2 hours of sleep, though. Violent jerking in the legs. It seems to be better when I stay dilligent with my herbs/treatment (go figure rolleyes )
Posted 8/23/2011 1:00 AM (GMT 0)
I actually react to all spices (except sea salt), as they are very high in salicylates. If I were to eat a spice such as cinnamon (or any other), it would worsen my myoclonus.
Posted 8/24/2011 5:47 AM (GMT 0)
Yes, I have MCS. Yes, I have reactions to many medications.

Lyme treatment has not been successful enough yet to get rid of my MCS - I'm still working on going after the Lyme. have to do it really slowly because whenever we go after it aggressively, it nearly kills me (makes me completely unable to eat so I have to be fed through a vein in my arm instead).

I do have genomic variants affecting my methylation cycle, which I believe is where most of my MCS comes from... I don't know if I react to Salicylates, but I know I'm allergic to aspirin. But I think I tolerate some high-salicylate stuff just fine (but not 100% sure on this).

I have a big big big problem tolerating sulfites and sulfa drugs and sulfates in skin products (shampoo, etc.) and sulfur-containing foods.
Posted 8/24/2011 2:18 PM (GMT 0)
Hi Razzle,

I discovered I had a sulfa alllegy when I was in high school. I broke out in hives when taking bactrium for an ear infection. Sulfa allergies are common and many people who have problems with sulfa also have problems with salicylates.

Although salicylate allergy can be genetic, I wonder if Lyme triggers it or makes it much worse than it would be otherwise. I also suspect that I have a problem with sulfites as well. I was reacting to foods that are high in sulfur but am able to eat small amounts of garlic now. I am still very careful to not eat veggies high in sulfur.

MCS can occur from being salicylate intolerant (have you been on the salicylate sensitivity forum/homepage?). I devloped MCS after removing chemicals, meds, cosmetics and foods moderate-high in sals from my diet in 2009.

I have been taking DMG glycine during the past few weeks and have noticed some improvement. I also take methylfolate as I have a family history of possible defective MTHR gene. 

Do you suffer extreme hyperactivity, neuro )i.e. myoclonic seizures and/or sleep problems caused by Lyme?

How long have you been receiving treatment for Lyme? Do you have other co-infections that have been treated? if so, what co-infections do you have? Did you get tested through Igenex?

Thanks a million :)

 

Posted 8/25/2011 12:34 AM (GMT 0)
Lyme is known to activate or trigger genetic issues. I think this is what happened to me with methylation/sulfite stuff and also gluten sensitivity (both are genetic issues for me).

I haven't really done any research on salicylate intolerance. Do you have a web link I can look at?

I don't have seizures, but I have had tremors, migraines, and severe sleep issues from Lyme.

I've been in treatment for Lyme since 2008 (with several breaks due to crashes caused by too aggressive treatment). I've had Lyme for so long, and have been on immune suppressants and also have an immune deficiency and a bunch of other complicating factors, so I think this is why it is going to take me a lot longer than most to conquer the Lyme.

I'm also diagnosed clinically with Bartonella; no tests have shown positive for any coinfections.

Yes, I was tested for Lyme, Ehrlichia and Anaplasma through IGeneX, and Fry Labs for all coinfections (did their entire coinfection panel). Everything was negative except the Lyme test.

Take care,
Posted 10/1/2011 3:55 PM (GMT 0)
Hi Razzle,

So sorry it has taken me so long to get back to you. You can check out www. salicylatesensitivity.com for info on salicylates.

I just received my verbal on the Igenex test and it was negative. However, I have requested to receive a hard copy as I know the test has been frequently misinterpreted by conventional docs. I may also ask to be tested for some c-infection bac, just for my peace of mind.

My original train of thought may be the true cuprit (sals). They can cause mito dysfunction, neuro, and GI problems (as Lyme can) so many of the symptoms are similar.

Posted 10/8/2011 5:46 PM (GMT 0)
I finally received my Igenex results back...

IgM Western Blot: Positive (Igenex positive)

Four bands are +, One Band is ++

One band is Indeterminate.

My Multiplex B. Burgdor. Serum Plasmid is Positive

My Multiplex B. Burgdor Serum Genomic is Negative

Multiplex results confirmed by Southern Dot Blot

My IgG WB was negative

My IFA is Equivocal (40)

Any thoughts?

Posted 10/8/2011 8:55 PM (GMT 0)
Well I would say congratulations! you have your diagnosis!!
Do you know which bands showed up positive? Some are more specific to Lyme than others.

Have you found a LLMD since your move?
Posted 10/8/2011 10:30 PM (GMT 0)
Igenex IgM Western Blot:
18+
**31=++
**39=Indeterminate
**41=+
58= +
66=+
Posted 10/8/2011 11:51 PM (GMT 0)
18 ................................ Thought to be specific to Bb
31 .............................. OSP-A, Highly specific
39 .............................. Thought to be specific
41 .............................. Non-specific Flagella (see * below for definition)
58 .............................. Not specific
66 .............................. Not specific

Well, this is looking like a good and positive result. Time to take the next step. Have you located an LLMD yet?

How are you feeling?
Posted 10/9/2011 12:45 AM (GMT 0)
I have felt like hell for five years but the first 1.5 years, I literally thought I was going to die. My puzzle was solved in a "backward manner" meaning that I spent the last five years conducting thousands of hours in personal research, as every doctor I saw never even considered testing me for Lyme. During my long, painful journey, I discovered I was intolerant to gluten dairy, salicylates, MSG, nitrates, preservatives. I even consulted with a mitochondrial specialist this past year and have been taking a mito cocktail (numerous supplements) that most integrative Lyme docs advise their patients to take. Mito patients take this cocktail to support mitochondrial functioning. I was basicallt self-treating myself through diet (25 foods), epsom salt baths and supplements, without even knowing I had Lyme! If I had never made any changes, I cannot imagine where I would be right now. I just pray that I do not have permanent neuro damage and that the bacteria can be eradicated. My symptoms have waxed and waned for years, but I have never had three days in a row where I sleep normally or feel rested. I have a list of LLMD's and am trying to decide whether I want to see a doc in DC (Dr. J) or a doc in Virginia. BTW..What is Flagella? Thank you for your support during this stressful time as my husband left me due to his inability to cope with my illness. In sickness and in health mean nothing to him.
Posted 10/9/2011 1:50 AM (GMT 0)
Sorry to hear you don't have the support of your husband. Lyme destroys so much.

Flagella are the tails that some bacteria have. Borellia, syphilis and the bacteria that cause periodontal disease have them.

Good for you for finally getting to the bottom of this. The changes you have already made to your lifestyle will make the adjustment to the treatment period much easier.
Posted 10/9/2011 2:09 AM (GMT 0)
Thank you so much for your support. I am also on another state forum and exchange research info with a state advocate. Very interesting about the Flagella. My husband had some dental problems..hmmm... I have close relative who is a dentist and will have to ask him about this bacteria!

Btw....the kind doctor who I persuaded to order the Igenex panel was in Fl. I moved to another state right after I sent off my blood draw to Igenex. My doc's office called me last week to advise me my test results were negative! I asked them to mail me a hard copy and realized the test is positive. What does that say about the lack of education on Lyme in Florida! I am planning to call him tomorrow.
Posted 10/9/2011 4:37 AM (GMT 0)
Nothing really to add, but YES! Me too! I get all sorts of muscle twitches and such, little electric impulses in my head, neck, legs, etc. just as I'm trying to fall asleep. Sometimes I don't sleep at all. And when I do it's not for more than 2 nights straight (and even those days are littered with frequent awakenings). It all got TONS worse when I started antibiotics. It became a full out non-stop adrenalin rush like no other. BUT I just started a Gaba supplement in the last few weeks that seems to be helping with all that. I'm still getting some twitches that shoot me from a mild dose to full out wakefulness, but it's not nearly as bad! Just praying it KEEPS working! I just posted about what I'm taking, so you can read if you'd like.

I also have food sensitivities. MSG just about kills me! Gluten I have to go super light on. Preservatives in general cause neck and back tension, hot flashes, migraines, etc. I can only sweeten things with agave nectar or honey. Dairy can be rough too. So yeah, I'm just another nameless face in the multitudes with these symptoms...

I skimmed through all the posts above and that's AWESOME that you got diagnosed!! :)
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