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Posted 7/4/2015 5:14 AM (GMT 0)
I'm having some very scary symptoms, I send my IGENEX test in on Monday. Unfortunately, I live in utah and the chances of it being lyme are remote (so I'm told), nor do I recount a rash of any sort.


My symptoms are mimicking ALS. Full body twitches (fasciculations) and slurred speech that came on slight and over the last month has progressed to the point where I can't hold a conversation for very long without starting to slur words like I'm drunk. I'm only 24 years old. Does lyme cause this severe of slurred speech? anyone with firsthand experience? it's like after speaking for a tiny bit every muscle in my face and jaw including my tongue just cant keep up and gives up, feeling stiff and tired.


Really scared. Really afraid of bulbar onset als.
Posted 7/4/2015 5:19 AM (GMT 0)
Sorry for all the posts, this symptoms is extremely concerning, and while I know lyme can cause speech issues, I have yet to meet someone that has got lyme in UTAH, or someone that has this bad of speech problems that progress this quickly.

really scared. Really need advice or reassurance that this isn't als or something. I keep being told how I'm not ok in the head and just need antidepressants, and yet here I am barely able to speak, twitching all over, with tinnitus, in pain, headaches 24/7, digestion issues, heart is skipping beats, Fatigue that kills me every day, panic attacks, derealization, blurry vision in one eye, heel pain, ETC ETC ETC. And all I'm being told is I have ANXIETY? I'm so frustrated, I literally feel like I'm dying and I cant even talk anymore! Does lyme ever show up without sever pain everywhere? I only have pain due to the constant stress, in the morning I ache all over from how stressed I am over this, but that is usually the only pain.

Not to mention the normal western blot and elisa both coming up completely negative with ZERO bands. I'm hoping for a different IGenex result. God I want to escape this hell, and am terrified of ALS. :( I'm in a very bad place.

Post Edited (st0rch) : 7/3/2015 11:34:32 PM (GMT-6)

Posted 7/4/2015 5:42 AM (GMT 0)
St0rch - I'm sorry you're going through all this worry!

We have a member on this forum - her name is Utahgal. i don't know if she got her tick bite in Utah or not...but it's possible. Lyme is just about everywhere.

I'm glad you are doing the Igenex Western Blot on Monday. I will keep my fingers crossed for you that you show positive bands...and you can start treating for lyme disease.

I had muscle twitching all over my body, too. I also had panic attacks, foot pain, and lots of pain.

Please keep coming back here for support. And, let us know when you get your results - what they are. it will take three weeks, though.

the regular western blot and elisa often show negative - they're not reliable.
Posted 7/4/2015 11:18 AM (GMT 0)
The woman in this video is from Utah and she has bad Lyme. She also has a good blog but I don't have the link. Sorry.


https://m.youtube.com/watch?v=bNOW0a9tp_0
Posted 7/4/2015 11:38 AM (GMT 0)
Found it.......


She lives in Salt Lake City....

http://willtherebecake.org/about-me-2/

.
Posted 7/5/2015 10:31 AM (GMT 0)
Hi St0rch,

I also have the slurred speach thing, just like you describe. Sometimes I get lost for words, because I can't think fast enough, other times its like what you describe.

That said for me it is a vicious circle - the more stressed I get, the worse it gets, the more stressed I get....

My bloods were negative (not igemex, from Greek hospital) and when I got them I really panicked as I felt I had no clue what was wrong, and yes, all my symptoms got worse, especially my speech. Yes, its scary, bloody scary!!!!

Once I actually got my diagnosis I certainly felt calmer, and more positive, which may sound a little weird, lol.

It is sooo important to destress, stay calm, take one day at a time. DO NOT PANIC!! Certainly wait till your igenex tesults come back, but many of your symptoms sound like mine.

I have been in treatment for a few months now and I feel like my speech is improving. I do however also make every effort to avoid stressful situations, so not to start down the 'catch 22' road.

Let us know how you are getting on, won't you.
Posted 7/5/2015 12:13 PM (GMT 0)
I am so sorry that you are going through this, although I have never heard of slurred speech and lyme all your other symptoms I can absolutely relate to. I have twitching all over my body, vision problems, anxiety, skipping heartbeats, burning skin sensation, neck pain, swollen joints, cracking joints and massive headaches, skin rashes and extreme fatigue. I have 5 negative Elisa tests, and one western blot test with all bands absent from a local lab. My igenex results are not back yet. I honestly don't trust any blood test anymore. My doctor in Germany diagnosed me due to clinical symptoms and I have the ac herxheimer skin rash that is typical for late stage lyme. When I am on doxy I herx like crazy, so I know it is lyme. So please don't just go by blood tests. I wish you all the best.
And don't panic, keep calm.
Posted 7/6/2015 2:22 AM (GMT 0)
Yes, Lyme can cause slurred speech.

I definitely have slurred speech.

You just have to get used to it, and learn to love yourself the way you are!

Margaret
Posted 7/6/2015 1:00 PM (GMT 0)
St0rch,

I have slurred speach, full body twitches. If my memory not failing I thought you posted about this already. I just turned 40 on Friday, ALS fear was all consuming and that is one of this reasons I pushed so hard for clarity on Lyme diagnosis.
I was CDC negative on Igenex test but then CDC positive on Labcorp.
I have been on antibiotics for about 3.5 weeks, oral doxy for 2 and iv rocephin for 11 days. I am seeing improvements, also Buhner lyme protocol.
Just try to be patient, I know it's terribly hard and scary!
We are here for you!
Iheartx
Posted 6/13/2018 11:23 PM (GMT 0)
Hello,

My husband has recently been diagnosed with ALS. He has slurred speech but it happened over night which doctors don't seem to understand and slight twitching in 1 arm. My friend told me to look into Lyme disease. Which test should order to confirm if he has it or not? How can I find an LLMD near me?

Annette
Posted 6/14/2018 12:19 AM (GMT 0)
Hi Annette - welcome!

I'm so sorry that your husband has that diagnosis. Definitely look into lyme.

One of the most experienced LLMD's recommends IV abx for anyone with ALS and swallowing issues. With his slurred speech, I'm thinking he has the Bulbar onset.

I don't know where you live and if it's practical to travel....but if you're interested in the information, send me an email.
Your husband needs to tackle this a.s.a.p.

You can also order the Igenex Lyme WB Igm and IgG for $250.

Call Igenex, they'll send you a test kit. Then get a Dr. ...any Dr. to sign the lab req . Get the blood drawn and send to Igenex via fedex. 3 weeks and the results are in.

In the meantime, you can make an appt. with a LLMD.
Posted 6/14/2018 2:46 AM (GMT 0)
Adorn - I know someone that has had same diagnosis and it has progressed rapidly. They are doing very mild lyme treatment which hasn’t been enough. I think IV antibiotics are the only way to go in this case. I’d recommend Jemsek clinic in D.C.

Does he have a history of tickbite?

Also, mercury toxicity can cause slurred speech & twitching. Any amalgams in mouth? If so, I would get them out ASAP with a biological dentist only. The person I mentioned above does have them and did not get them out.
Posted 6/14/2018 3:01 AM (GMT 0)
k07 - Thats who I’m thinking of too. (You prob figured that out)

I am emailing with someone whose sister has it and is progressing quickly too.
Posted 6/14/2018 3:21 AM (GMT 0)

Girlie said...
k07 - Thats who I’m thinking of too. (You prob figured that out)

I am emailing with someone whose sister has it and is progressing quickly too.

Yeah, I gathered that! There was one talk where Dr J spoke specifically about lyme ALS and that he can only treat if patient has a good amount of function (for lack of a better term) left. That has stayed with me. The slurring can rapidly progress to trouble swallowing.

Annette - also google dr david martz who was diagnosed with ALS but it was lyme. He treated IV - i think 3 different antibiotics.

/youtu.be/xkrpKnK-X5w
Posted 6/14/2018 4:52 AM (GMT 0)

k07 said...

Girlie said...
k07 - Thats who I’m thinking of too. (You prob figured that out)

I am emailing with someone whose sister has it and is progressing quickly too.

Yeah, I gathered that! There was one talk where Dr J spoke specifically about lyme ALS and that he can only treat if patient has a good amount of function (for lack of a better term) left. That has stayed with me. The slurring can rapidly progress to trouble swallowing.

Annette - also google dr david martz who was diagnosed with ALS but it was lyme. He treated IV - i think 3 different antibiotics.

/youtu.be/xkrpKnK-X5w

Dr. J did an interview and spoke of the IV abx...maybe that's the same one you're talking about.

His clinic can usually take new patients within a couple of weeks...
Posted 6/14/2018 11:48 AM (GMT 0)
Girlie & K07,

Thank you for the responses. I live in the DFW area. Would you happen to know of anyone in this area? He doesn't know if he had a tick bite but all this started with a severe vertigo episode and he was stranded in a rest stop in the grass in the middle of no where for over 3 hours. After taken to the hospital the next day woke up with slurred speech. Dr put him on steroids/anti viral meds and it helped a little. He was told he has some weakness in his tongue which is causing the slurring but swallowing is in tack. As for the IV antibiotics do you happen to know which ones I need to request and if a dr needs to prescribe it.

How do I email you directly on this site?

Please send me the information on the Dr's and I will give them a call and see what we can do. All this becomes very expensive but I need to try and get him better.

thank you,
Adorn
Posted 6/14/2018 1:18 PM (GMT 0)
Please watch the video I sent you - he talks of his symptoms and lyme testing which you may find interesting. Please do not do the standard ELISA from a PCP. It is like a coin flip. I've never once been positive on it. But I am positive on the C6ELISA and through IGeneX. IGeneX is recognized by CDC so it is a valid test. Pretty much the gold standard in lyme treatment.

As for treatment, I fast forwarded through the video quick and found that he did IV rocephin, oral azithromycin, mepron and flagyl. So only one IV drug.

I know this is expensive, but you may be able to submit some to insurance companies. The western blot through IGeneX is about $200-$300. Again, if you submit it some insurances will cover a portion.

Did he have any illnesses lately? Vaccines or dental work? The person I know did seem to have it all triggered by vaccine. It started with hearing problems. I can't remember if he was dizzy/vertigo-like. But this all sounds very similar.
Posted 6/14/2018 2:10 PM (GMT 0)
K07

No vaccines but my husband's job requires that he travels so he's pretty much on the road all week but within the US. He just travels to where the client is. He's had hearing issues in the past but it started when he had his first vertigo episode. He donates platelets all the time. the extent of dental work would be a cleaning. He's been under extreme stress and dealing with a child with Autism adds to the stress levels as well. The only illness I can remember is a cold or stomach virus. He did have shoulder surgery like 2 years ago.

His neurologist is going to test him for Lyme but I'm waiting to find out which one is she doing before I order this IGenex test to do on my own. He's done Vitamin C/Magnesium IV's which he showed some improvement. He's also been diagnosed with sever TMJ which causes sever pain in his jaw and makes it hard to chew.

I did watch the video and it's very interesting.

Post Edited (adorn) : 6/14/2018 8:21:24 AM (GMT-6)

Posted 6/14/2018 4:59 PM (GMT 0)

adorn said...
Girlie & K07,

Thank you for the responses. I live in the DFW area. Would you happen to know of anyone in this area? He doesn't know if he had a tick bite but all this started with a severe vertigo episode and he was stranded in a rest stop in the grass in the middle of no where for over 3 hours. After taken to the hospital the next day woke up with slurred speech. Dr put him on steroids/anti viral meds and it helped a little. He was told he has some weakness in his tongue which is causing the slurring but swallowing is in tack. As for the IV antibiotics do you happen to know which ones I need to request and if a dr needs to prescribe it.

How do I email you directly on this site?

Please send me the information on the Dr's and I will give them a call and see what we can do. All this becomes very expensive but I need to try and get him better.

thank you,
Adorn

Please email me. your email isn't enabled. Click on the envelope below my screen name on the left.

Where is DFW? (Sorry - I'm in Canada...not familiar)

I'm not sure which IV antibiotics the clinic uses (the one I'm recommending)
But, you do want to get a Lyme Literate Dr. to do the treatment. Most 'regular' Dr.'s (including ID Dr.'s) will not treat lyme long enough or with the appropriate dosages of antibiotics.
Posted 6/14/2018 6:20 PM (GMT 0)
Girlie,

Just sent you an email. I live in Dallas Texas area
Posted 6/14/2018 9:09 PM (GMT 0)

adorn said...
Girlie,

Just sent you an email. I live in Dallas Texas area

Okay - I’m posting on my phone as I’m not home - I will check my emails when I get home in a couple hours
Posted 6/14/2018 10:57 PM (GMT 0)
Twitches yes. I'll get stuck on a word for a couple minutes then it will go away. Not so much slurred.
Posted 6/14/2018 11:55 PM (GMT 0)
Livingforhope,

He has trouble getting words out due to the weakness in his tongue. He went for a swallow test and that's how they determined he had tongue weakness. Some times its better but by the end of the day it gets worse.
Posted 2/1/2021 5:11 PM (GMT 0)
I know it’s a very old thread but I’ve finally found someone who has experienced similar symptoms - Lyme induced dysarthria (speech problems). I see st0rch hasn’t posted in a very long time; does anyone know whether he/she still visits this forum or how to contact them.

Has anyone else gone through similar symptoms? Is recovery possible? How is st0rch today, in remission or still battling the disease? Any help would be really appreciated.
Posted 2/1/2021 5:59 PM (GMT 0)
Yes, I had this. Many have.

I no longer sound drunk, but im in "remission", no "critter killing" since 2016.

When my body was at it most toxified state is when my speech was at its worst. Lots of ABX + candida, I had to string together 3rd grade level sentences, as I had major word search issues too.

I have several poor liver detox genes (ones that are never mentioned but should be for people on "bug killing" abx and herbs). I dont detox correctly. never will. I quit alcohol 95% for this reason too.

With thyroid issues even treating at optimal levels, I think some of this will always be there- thyroid levels have a huge impact on cognitive ability. Being on thyroid replacement hormone is NEVER the same as your own, even with optimal levels.. Weird but true.
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