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Does this sound like what you know of Lyme disease? Can it appear on the left side of body only?

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Posted 6/11/2013 3:12 PM (GMT 0)
A neurologist has diagnosed me with cramp fasiculation syndrome after an EMG. However, I noticed that my pain and weakness was 90% on my left side. I subsequently was diagnosed with Lyme after I tested positive according to CDC standards on Igenex Lyme test. I have painful electric shock feelings all over my muscles after use. When I wake up in the morning I notice my left hand is very weak. I have also noticed that my left leg looks somewhat weaker than my right leg in the mirror (particularly just above the knee). I fear ALS but was wondering if Lyme could present on one side of the body more than the other? I am on day 12 of a 90 day antibiotic course. So far, I think I am noticing slightly less pain in the muscles, but the weakness continues to progress and even holding a book in my left hand will cause my hand to tremble and shake. Is it possible that this is Lyme and it is affecting my left side much more than my right? Or, is this likely ALS? I see an ALS specialist in 20 days, but I wanted to hear more about the Lyme perspective from those knowledgeable about lyme. Thank you for you help...
Posted 6/11/2013 3:32 PM (GMT 0)
Hi there,

The answer is YES.

My left side has always been much worse,more pain,inflammation and weakness than my right side.

Thankfully with treatment my left side is "catching up" :-)

You will notice that with time and patience your muscle tone and strength will start to improve,how long it will take is another matter sadly.

Hope this helps

Tickled
Posted 6/11/2013 3:32 PM (GMT 0)
Lyme can present as and be misdiagnosed as many different things: ALS, MS, Parkinsons, Alzheimers. There is rarely a consensus on symptoms. Everyone presents differently.

I would say that if you have a CDC positive lyme test that you have a good strong case of lyme. Many people's tests come back with only one or two IND (indeterminate) or slightly positive lyme specific bands and are diagnosed as negative, and then they start questioning MS? ALS?

The lyme specific bands can only be caused by the presence of the lyme bacteria, they do not cross-react with other infections. LLMD's generally consider 18, 23, 30, 31, 34, 37, 39, 83 and 93 specific for Lyme. 31 takes 1-2 years to even show up and indicates chronic Lyme. 83 and 93 are the DNA of the spirochete. Standard labs do not report 7 of the 9 IGM relevant bands and 3 of the relevant IGG bands. Standard labs do report bands 28, 41, 45, 58 and 66 which cross react with other bacteria and are not considered relevant to a Lyme diagnosis.

You need to find an ILADS recommended LLMD in your area and do testing for co-infections (bartonella, babesia, ehrlichia, mycoplasma) as well.
Posted 6/11/2013 3:41 PM (GMT 0)

Hi Jakela,

Many people on here, as myself, have one side of the body that is much worse than the other. It's my left side.

I've got no muscle power left at all, my muscles are still there, they haven't faded much, but the strength is all gone - holding a book also makes my arm/hand tremble.

I have Lyme and Bartonella, but know nothing about ALS... other on here do, I'm sure they will join in.

Marie

Posted 6/11/2013 6:58 PM (GMT 0)
Thanks to everyone for the information and encouragement.

These are my Igenex results. The test said I was CDC and IGM positive, but it does not seem like it is very conclusive. Based on these results would others say my Lyme looks positive.

18 kDa. -
23-25 kDa. -
28 kDa. -
30 kDa. -
31 kDa. -
34 kDa. -
39 kDa. +
41 kDa. +++
45 kDa. -
58 kDa. -
66 kDa. -
83-93 Kda. IND

Thanks for any feedback on these. It seemed to me that it is "barely" a positive.
Posted 6/11/2013 7:38 PM (GMT 0)
Band 39 is the most Lyme-specific band so yes you are very positive. Believe me it doesn't show up positive very often so you are one of the lucky ones. Band 23-25 is another key Lyme band but it doesn't show up much with IGenex for some reason so it's no surprise you didn't either. 31 and 34 usually take over a year from infection to show up if they do. Stick with the Lyme treatment and don't stop after 90 days. It could take a year or more of treatment with Lyme plus you could have co-infections that require different abx. It's very complex so make sure you have the right doctor treating you.
Posted 6/11/2013 9:23 PM (GMT 0)
Jakela, I don't think your Lyme is symptomatic of ALS. From what I understand, people, like my husband, with this "so-called disease" do not experience sensory symptoms. There may be rare cases of sensory neuropathy with a diagnosis of ALS, but from what I have read, it isn't common. Even so, you tested positive for Lyme and many, including myself, believe Lyme is the root cause of these chronic conditions. Therefore, you would want to concentrate on fighting this infection. This gives us hope...for even the most serious neurological disorder. Stay positive so you can work on beating this disease.
Posted 6/11/2013 9:46 PM (GMT 0)
Hi Jakela! Welcome to our little community!

I agree with the others here, Jakela. You actually have overwhelming evidence that you have Lyme and possibly other tick-borne infections as well. The most knowledgeable LLMD's diagnose based on symptoms (clinically) because the tests are so unreliable - only catching 50% of those that have Lyme. So your test results are quite significant!! I had to be on really strong antibiotics (abx) for a full year before I tested positive for Lyme!

Can you tell us what abx you are on and what the dosage is? Many doc's unknowingly prescribe too low of a dosage and all it does is stop the bacteria from replicating rather than killing the bacteria.

If you haven't already, it would be helpful 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 important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from!

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 about our infections and the different ways to treat them!

I don't know what kind of doctor that you are currently receiving treatment from, but you really need to have a doctor that understands just how complex and difficult these infections are so that you will be much less likely to suffer a relapse. The doc's that use the scientific information that is available to us about these diseases are actually called LLMD's - Lyme Literate Medical Doctors - not Infectious Disease doc's. If you aren't seeing a LLMD, I would highly suggest that you do, unless you wish to use Holistic medicine to heal from these infections.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

You can also email our long time member, Dan's Mother at:[email protected]

You can also email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ 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) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. 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 6/12/2013 12:53 AM (GMT 0)
Thank you for the help. This is a very supportive group.

I am currently taking...
Azithromycin
Minocyline
Byron White's A-Bart

I also detox with..
Chlorella
Bryron White's Detox 2
Epsom salt baths
Dry saunas

I also take many suppliments and probiotics.

Has anyone else with Lyme here experienced fasiculations throughout their body? I have not read that as a typical symptom, but it is prevalent in my case. Thank You...
Posted 6/12/2013 12:56 AM (GMT 0)
Actually, there are several of us that have experienced them. Most call them Lyme seizures. When I was having them, they could 'bounce' me right off of whatever I was sitting on. Completely uncontrollable, and more than a little bit embarrassing when it happened while I was out too!!
Posted 6/12/2013 12:57 PM (GMT 0)
Thank you Traveler

I have noticed some spasm like muscle seizures that are embarrassing, but they are rare. I am sure if I have read that other Lyme sufferers have had fasiculations similar to mine. They are constant ongoing muscle twitches all over my body. They show up on an EMG test and they never cease and fire once every second or more. These small twitches do not make my limbs move at all, but they are as though there are small movements under the skin. My neurologist called them fasiculations and they showed up clearly on an EMG recently. They are visible as very small twitches of the skin. I have also had physical therapists feel them in the past. But, the neurologist noted that my actual nerve quality was not diminished and for this reason he called my situation benign, for now. If they produce noticeable muscle loss or reduce nerve quality as seen in future EMG tests or clinical evaluations, then the neurologist would conclude that I have ALS. The main reason I am asking about fasiculations is because I have them very strong all of the time all over my body and they are a hallmark precursor to ALS. I have also read that many if not all ALS patients test Lyme positive. There is a theory that Lyme might cause these other neurological diseases in a small number of patients. Have other Lyme patients had an EMG that showed clear and continual fasiculations? Or, is it more typical that a Lyme patient would have spasm like muscle movements intermittently or on occasion?
Posted 6/12/2013 2:57 PM (GMT 0)
Well, I never did get an EMG for this, but I had continual muscle fasiculations for years - terribly frustrating, especially since the one just under my right eye never went away! Not many couild notice it, but I sure did!

The thing with Lyme is that it has so many different presentations that it makes it hard to diagnose clinically - unless you have had either enough years diagnosing, have lived with many of the symptoms for years and years, or have had extensive training from ILADS (International Lyme and Associated Diseases Society). That's why only LLMD's (Lyme Literate Medical Doctors) and patients are willing to tell people- yes, you have Lyme!

What I'm trying to say is that yes, Lyme can present with both clear and continual fasiculations, or have spasms that are like muscle movements intermittently or on occasion - but that sounds like I'm trying to avoid the answer!! LOL! So you got the long answer! smilewinkgrin

These manifestations are from Neuro Lyme disease. The muscles are getting very confusing signals from the brain and since they just do as they are told (by the brain), we see these muscle issues frequently.
Posted 6/12/2013 4:22 PM (GMT 0)
Thank you again. It is reassuring to hear that others have this much going on as well. I do have a Lyme literate physician, but he is extremely busy so I was not able to exhaust him with all of the questions. I appreciate the detailed answer.

I am on day 14 of a 90 day course of antibiotics. Also, I received my third intravenous vitamin infusion from the doctor today. Thanks to all here for the continued hope and I will keep you updated on my prognosis. I seem to have slightly less pain, but the neuro symptoms are the same if not worse since I started the antibiotics, but granted it has only been two weeks.
Posted 6/12/2013 4:49 PM (GMT 0)
Are you able to follow the detoxing instructions that can be found in the "New to Lyme?" thread? That will help with the increase of severity of the symptoms due to the abx usage. The abx kill the bacteria and this type of bacteria produces toxins that increase our symptom severity and sometimes even brings on new symptoms. Detoxing has proven to help alleviate this at least some for us.

Things like eating as healthy as you can afford to do, being sure to drink at least 4 ounces of pure water (don't add in lemon juice, this is known to increase muscle spasms/cramps/twitching), dry skin brushing, Epsom salt/peroxide soaks (go easy when you start these!), and even drinking green smoothies are all good ways to help your body deal with the increased toxins.

Also be sure that you are taking between 30,000 to 50,000 units of a really good probiotic to help keep your intestines functioning and ward of a Candida (yeast) infection.
Posted 6/12/2013 9:30 PM (GMT 0)
Jakela, My husband, Toby, has fascisculations only in his arms, especially the right one. He was diagnosed with ALS last summer. Like I mentioned before, my husband and I believe the root cause of many neurological illnesses is Lyme or some type of infection. They don't know what causes ALS, MS, Parkingson's, etc. Until they can come up with a reasonable explanation for why people suffer from them, we will continue to believe that Lyme is the root cause. It is just too coincidental that people who have a condition like ALS also suffer from Lyme. We don't focus on what he was diagnosed with anymore because he is slowly getting better with Lyme treatment. There isn't any point anyway. The neurologist would only tell you that there isn't any cure for ALS - which you probably don't have anyway - so it's really best to focus on getting treated for the Lyme. I hate to see you put yourself through misery when there are positive outcomes for Lyme treatment. I went with my gut feeling on checking out Lyme and I was right.
Posted 6/13/2013 8:49 PM (GMT 0)
I am following the detox instructions. This morning I laid out the plan for how work out all of the medication and supplements times. Thank you for your help with this.

Also, I am doing the best I can to try and stay positive. The left sided weakness symptoms do freak me out, but I know I need to stay calm until the neurology visit. If all goes well and this is Lyme with good prognosis, I will go back to working in the film industry. However, that seems like quite a bit to ask for right now. Just one day and one step at a time. Thanks to all for the encouragement.
Posted 6/13/2013 10:23 PM (GMT 0)
Are you seeing a Lyme Literate Neurologist? If not, I would suggest that you find one or use a LLMD, as a regular Neurologist won't ever consider Lyme as a possible cause to your issues - no matter what the test results say or your symptoms indicate.

You are so right, it's one step at a time and one day at a time!! Many keep a journal so that they can track things like when they have symptom flares and also you can always look back and see if you have had any improvements - sometimes it's hard to see them.

Of course we wish you the best and that you fully recover so you can go back to work in the film industry!
Posted 6/13/2013 10:46 PM (GMT 0)
Hi Jakela! I just wanted to touch base. My right side is/was the weakest. Even my throat, kidney, etc on the rift side are worse than the left. Have you had an MRI done? My scan shows inflammation and helped me to see what else is going on. Yes treat the Lyme and I pray you don't have coinfections but its better to know. Any good doctor will clinically diagnose you vs. waiting for a blood test.

Good luck and blessings! You're in the right place!
Posted 9/6/2013 2:10 PM (GMT 0)
Hello again. Returning back here as a long medical adventure. After two EMGs a neuro tested my blood for Ganglianic receptor antibody with the Maya clinic laboratory. I tested positive for that which meant I had a 30% chance of this being cancer. Following that I went to an oncologist and he ordered a full body MRI with contrast. The MRI did not detect cancer. However, the oncologist did not rule out that it could be developing small and causing an autoimmune response in the nervous system. But generally he said chances of it being cancer are low to none. So, back to Lyme. I have had two more western blot tests since. Both were negative. VERY negative. This is after two months on oral antibiotics, but I am left a bit confused. The Igenex lab gave me that CDC positive as I posted above. But this other western blot lab said my factor was around 6 and that 90 and above was positive. So I was not even close to positive. I am now left with confusion about Lyme and maybe wondering if this is what the neurologist called BFS? (Benign fasciculation syndrome) And, lingering in the background is this slight risk that it might actually be cancer. What a mess. I also now see black blood in my stool. Has anyone GI problems from Lyme?
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