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New here, my story... I have foot drop and muscle twitching...

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Posted 9/14/2015 12:13 AM (GMT 0)
Hello,

I'm new here. I could use some help. Here is my history. I'll try to be succinct.

about 2 years ago I noticed there was just something wrong with my body. I noticed something weird with my tongue. I was having strong prick sensations in it a little difficulty with complex enunciation. No one noticed it but I felt it. I had several issues but they were all minor and subtle. some joint pain (who doesn't?), a little balance issues, brain fog?, but together they added up to something just wasn't right.

I went to my regular doc who sent me to a neurologist who was very cold and insensitive.... told me to stand on one foot for 5 seconds, said my balance was fine. had me push my tongue against the side of my cheek out, while he was pushing in, said he couldn't hear any speech problems and my tongue is strong. Said he could do a really painful nerve test to see if I have ALS which I denied.

I started reading online about Lyme, and made my way to the local lyme literate doctor. she tested my blood at Igenex and Quest Diagnostics. IGM was positive on both. IGG was negative. My lyme doc said that's a positive test. My parents showed the test results to their friend who is an infectious disease specialist and he pointed out that right on the Quest results, there is an explanation that says if the IGG is neg and the IGM is pos, it is FALSE POSITIVE TEST unless I was bitten by a tick in the last month (which I was not).

see test results:

VIEW IMAGE

VIEW IMAGE


So. against the advice of my parents and their expert doctor friend, I followed the lyme doc and took antibiotics for 1 year. at the end of a year, I didn't have joint pain, but my speech, balance, brain fog, and pricking tongue symptoms persisted. Still, I thought a yaer on antibiotics was enough, so I stopped. My doc thought since the other symptoms went away, perhaps we got it... and I will just continue to have some lingering affects like the tongue thing.

That was about 4 months ago. Skip to now.

One week ago I noticed something weird with my ankle and looked online and found I have foot drop. I freaked out seeing it is a symptom of ALS and MS... plus my tongue thing.

Called up my regular doc said I need to see a neuro right away. They wanted to see me first and confirmed I have foot drop. Sent me to the same cold insensitive neuro I saw before. This time he kept looking at his watch. Did the same tests again, said he still can't hear a problme in my speech, said the foot drop is probably form crossing my legs too much. Still he agreed it might be a good time to do the (painful) nerve test. He mentioned ALS. But he can't schedule it until 5 weeks from now. He asked me if I have any other symptoms including numbness, twitching. I said I didn't think so.

When I got home I was lying on the couch and I could feel strange sensations in my legs. I looked at them and they were twitching all over the place. tiny little twitches, not the whole muscle. But it was a twitch every second, or even more than that.

So now I have 3 symptoms of ALS/MS and I have to wait 5 weeks for the painful nerve test.... and I start thinking about lyme again. Is it all getting worse because I went off antibiotics too early?

I have an appointment with my lyme doc in 2 weeks. I'm sure she's going to say I should go back on antibiotics. maybe intravenous this time.

I'm not sure what to do or think. I am worried about ALS and MS. I know it could also be lyme. But geesh, the regular doctor wouldn't even agree with the test results and said they were negative.

I feel like I should get the nerve test, because at least I would have a conventional diagnosis and my friends and family would stop thinking I'm imagining everything. But I think I should still pursue treatment as if it were caused by lyme.

So here I am. I could use some help. here are a few questions. any help is appreciated.

Is foot drop really a symptom of lyme?
Is excessive nerve twitching a symptom of lyme?
Have either of these symptoms really gone away after treating with antibiotics?
What do people here think about that whole issue of IGM vs. IGG??

Any other thoughts are appreciated!

thank you
gb in vt
Posted 9/14/2015 1:09 AM (GMT 0)
Gary Welcome! I'm so glad that you chose to join our community!!

You had a CDC positive test. Were you seeing an Ilad's trained LLMD?

Infectious disease Dr's are the most vocal that Lyme disease doesn't exist.

It sounds like you stopped treatment to soon and that your LLMD may not have been well enough versed.

If you haven't ​yet​, 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, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can email the Tick-Borne Disease Alliance at​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


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​​

ILADS has their own referral system as well:ilads.org/ilads_media/physician-referral/


​ You will want to find an ILADS 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. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
http://www.ilads.org/lyme/treatment-guideline.php


Other's will add more.

Janet
Posted 9/14/2015 1:30 AM (GMT 0)
Welcome to our community, Gary!

Janet has give you some good information. I, too wonder if your Dr. (who was treating you for lyme disesase) is ILADS trained.
Do you remember if you were treated for co-infections (bartonella, babesia)...because it does sound to me like you weren't adequately treated...and stopped too soon.
Do you remember changing up your antibiotics in that year?

I see on the test results - it says "10 embedded ticks, erythema rash" in hand writing - if that's the case, then that's more proof you have lyme disease.
So, to sum it up, you had tick bites, bulls eye rash, symptoms, and a CDC Positive test...- no questioning - You have lyme disease...and you need more treatment.

Yes foot drop and twitching can be symptoms of lyme. I had twitching, and has almost gone completely away since treatment.

I've also had the painful nerve testing done.

I had positive IgM and negative IgG and my infection was over a year old. My LL Dr. is treating me for lyme disease, and you should still be getting treatment.

We can help you find a new LLMD - Start a new thread titled: "Looking for LLMD in/near_______" and insert your city and State.
Posted 9/14/2015 2:16 AM (GMT 0)
thank you for your quick replies. I'm so glad I found this place. here are some answers to your questions

1) my Lyme doctor is ILADs trained. she goes to their conferences and all that. I'm not sure what I said that made you question that. All along she has been saying my tests were positive. I am confident that i'm going to the best lyme doctor in my area. she is well known as the only LLMD in my area.

2) IGG/IGM. My first IGM was positive but the IGG was all negative, "indicating a false positive on the IGG unless bitten by a tick in the last 4 weeks"). My lyme doc said not to worry about it but didn't really have a concrete explanation, but she suggested we do another IGG, which we did. The results were just one positive band (#41). Then it says that "by CDC criteria the IGG is reported positive if **5** of the bnads are present." I had only 1 positive. so overall the test would be considered negative.

So... yes it does say on my original test that that the IGM is positive, even by CDC standards. HOWEVER, it clearly states that it is only positive if I was bitten in the last 4 weeks and if I wasn't then the IGG has to be positive too. So... by those standards I tested negative..... or am I missing something?

3) concerning the note on my test page that I have been bitten 10 times, I think that was an over estimation. I remember being asked in the office. and I just thought to my self, well I'm almost 50 and I guess I've been bitten once or twice a decade, so I just guessed at 10. But now that I think of it I've probably had more like 3 embedded ticks in my life. but here is a strange twist. AFTER my blood was drawn for all the tests mentioned above, and before I came back in to hear the results, I found a tick embedded in my abdomen. So whatever happened there, it would not affect the test results. But get this, that was a year and a half ago and I STILL HAVE a red mark there. I also have had one more tick bite since this all happened and the mark has remained there for several months as well. Both of them seem to almost completely go away and then they start flaring up and itching again. I can't believe how long they have stayed there. My LLMD says she has seen that before.

Girlie, I am wondering about that painful nerve test... what were your results? How much did it hurt? My doc gave me a prescription for valium and he told me to take it an hour before I come in for the test, when I told him I don't like needles.


thank you again
gb in vt
Posted 9/14/2015 3:06 AM (GMT 0)
" I followed the lyme doc and took antibiotics for 1 year. at the end of a year, I didn't have joint pain, but my speech, balance, brain fog, and pricking tongue symptoms persisted. Still, I thought a yaer on antibiotics was enough, so I stopped. My doc thought since the other symptoms went away, perhaps we got it... and I will just continue to have some lingering affects like the tongue thing."

The reason I asked if your Dr. was ILADS trained is because treatment was stopped when you still clearly had symptoms. Treatment must continue until symptom free,and then a while longer.
Because some symptoms went away, doesn't mean you're finished. I have had some symptoms go away, but I have many more...and we are now treating for a co-infection.

The IgG vs IgM - I think that is nonsense...My LLND saw my Positive IgM and didn't blink an eye at the negative IgG. It is known that sometimes the IgM bands will change over to IgG in time...but not always.

Well, even if not 10 embedded...you've had at least 3....and a red mark still from one of them.

I didn't get to see the print out from my nerve test. I was told that I was 'fine'. I didn't care for the Dr. who did the test. Well, no one prepared me for what it would feel like...so I was surprised...but I'm a wimp with needles, and I managed to hang in there. My arm and hand were stuck with the needles...and one time my leg kicked up...lol...don't know why that happened. The good news is the entire test doesn't take very long - I think both the EMG and NCS took a total of about 15 mintues.
I get my blood drawn every 3-4 weeks, and I cringe everytime...look away...like a little kid...


Do you know if you were treated for a co-infection? Do you remember what antibiotics you were on? Did it change a few times during the year of treatment?
Posted 9/14/2015 3:28 AM (GMT 0)
we did change antibiotics a few times, but she indicated it was more because they can become resistant to one antibiotic over time and we have to switch sometimes because of that. I don't know about co-infections. I will ask her when I go in on the 28th. I have a lot of questions for her this time.

FYI, it was really me who wanted to go off the antibiotics after a year. she wasn't really pushing for it. it was me. it just seemed like a long time to be on them and not a lot had changed.

a few other issues/subject have come up in my research online, wondering if anyone has anything to say about:

--mercury poisoning and lyme disease.... chelation therapy as part of lyme treatment (I had a tetanus shot not long before this all started and wondering if that triggered something)

--lion's mane mushroom extract, supposedly repairs myelin sheath
Posted 9/14/2015 5:45 AM (GMT 0)
Gary-the IgG vs IgM issue leaves me baffled. You tested positive. End of story. It doesn't matter if it was IgG or IgM. The old theory that IgG means and old infection and IgM means a new infection is now longer followed. It's far more common to have a positive IgM test which only means that our body is newly recognizing it. That's very different than a new infection. Lyme does an amazing job of hiding from our immune systems.

If your LLMD is the best in your area why not follow what she rx's? If you were not seeing improvement than either look into one of the herbal protocols or find another LLMD in a nearby state. Stopping treatment just let's the Lyme and likely co infection or two reek more havoc with your system.

Here is a symptom list for the co infections. Note that it is in a semi spread sheet form and the form is larger than this forum so it repeats itself. You need to scroll down to see the second half of the symptoms for each co infection. www.lyme-symptoms.com/LymeCoinfectionChart.html

There are a handful of herbal protocols that many on here do. One of the most popular is buhnerhealinglyme.com/ Cowden is another, Byron White and Jernigan. Here is a recent post discussing options https://www.healingwell.com/community/default.aspx?f=30&m=3481536
Posted 9/14/2015 11:49 AM (GMT 0)
Hi Gary and welcome!

The only thing I have to add is about detoxing. When I first heard about detoxing I thought people were nuts as I thought what does detoxing have to do with chronic lyme? I didn't get it years ago but I get it now... Toxins could be the reason for your foot drop and muscle twitching.

When lyme bacteria die they leave over toxins including the worse neurotoxin called Ammonia.

In the sticky thread on top are instructions on how to detox.

You may want to read the article below written by Dr. Jernigan called Lyme Toxins the Primary Cause of Your Symptoms:

www.benbrew.com/lb/lyme5.pdf

Hope you feel better,
Denise (also in VT)
Posted 9/14/2015 1:04 PM (GMT 0)
Welcome Gary!

You've been given great information already and I can only emphasize the need to treat for 2 months past complete resolution of symptoms.

The fact that you feel things didn't change after a year on abx could mean a few things: you weren't taking effective meds, you are dealing with a coinfection that hasn't been addressed, you are dealing with cyst forms and/or biofilm.

Without a doubt, detoxing is a vital part of healing. The following link has some great detox suggestions:

www.tiredoflyme.com/detox-methods.html

I'm glad you'll be seeing your LLMD again and I hope you plan on treating as ILADS recommends. Yes, it's a long haul....a very long haul. But, you'll get your health back and that's really all that matters.

Please continue to post with any questions or concerns you may have. We'll do our best to help. After all, we're all in this together.
Posted 9/14/2015 1:30 PM (GMT 0)
Hi Gary,
Well, you've gotten quite a welcome so far, so I'll add mine in too! :-) Welcome to our community!!!

You have a VERY positive test, to be honest. You're doctor should have been pushing you to stay in treatment, even after a year. You have to count the "IND" (which means indeterminate - neither fully positive, nor fully negative, but showing a response) as positives, albeit weak positives. The Lyme bacteria can inhibit the immune system so that it doesn't produce the antibodies required for positive on the tests - so the IND's are counted as positives by those that are properly educated - so I would be asking your doc if they are ILADS educated, because it honestly doesn't sound like it.

ILADS (International Lyme and Associated Diseases Society) is the only organization that actually believes in chronic Lyme - otherwise you almost always get doctors that think Lyme is hard to catch and easy to treat with only a couple of weeks of abx (antibiotics) - which is about as far from the truth as one can get. So you are caught in a political fight is why the controversy.

With your doctor thinking that you may have taken care of your infection(s) simply because you have completed a year's worth of treatment- even though you still have symptoms - that's another huge indication that they aren't ILADS trained

So in truth, you had 4 positive Lyme specific bands on your IGM results - and that's significant! Not to mention the notes that I read saying you have had about 10 ticks embedded during your life, that you have had the bull's eye (that alone is proof you have Lyme, as Lyme is THE only thing that can cause that), and I am assuming the other thing that was written on the test looks like you have joint pains, so I"m not sure what that's about. Typical Lyme symptoms. Again, I would question your doctor about being ILADS trained, if they aren't, it's highly unlikely that you will get the treatments you need.

If you haven't ​yet​, 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, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.

Mercury poisoning is definitely not likely after just one shot. I had to have a tetanus shot just about a month ago, and I'm doing fine, although I did have some digestive issues for about a week afterwards.

And as far as Lions mane, and things like that - it's all highly individual. No one knows beforehand what will work for them and what won't. I would wait on that, since you don't seem to have much nerve pain (unless I misunderstood) and concentrate on getting back in treatment and get some detoxing going first. Then we can help you figure out if you need something like Lions mane, red root or something else.
Posted 9/14/2015 2:41 PM (GMT 0)
thanks, to clarify, I don't have nerve pain but I have nervous system issues. I have the foot drop and constant weird twitching all over my body. I am also starting to feel something weird in my arms and fingers. I'm sure if i'd describe it as slight numbness or weakness. when I type on the keyboard or use my mouse, something just doesn't feel right.
Posted 9/15/2015 6:38 PM (GMT 0)
That would be normal for Neuro Lyme. Sorry that you are experiencing this, I know how disturbing it can be. You need to be in treatment, or change your treatments because the one you are using isn't working for you.
Posted 9/16/2015 8:26 PM (GMT 0)
I have very similar neuro lyme symptoms.  Speech issues, balance sucks, muscle twitching, weakness, stiffness, etc.  I was diagnosed with ALS a year ago before i tested positive for Lyme so don't let the ALS thing freak you out.  It still enters my mind just because my symptoms aren't getting better yet on lyme meds.  Get back to treating the lyme & I'd suggest talking to your LLMD about IV rocephan.  PICC line gets annoying, but supposedly is best drug for nuero lyme.  I'm in my 5th month of treatment with rocephin & still taking Biacin as well.  Nuero lyme is difficult to treat so keep telling myself to be patient.

 

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