Confused and scared

Hi, new to forum and to Lyme.

I was diagnosed a couple of months ago with als but it didn't seem to fit all of my symptoms. I did go to a llmd and he says it's not als but rather lyme. I am thrilled he thinks its Lyme but scared that it could be wrong.
My symptoms
Poor memory
Lack of concentration
Panic
Anxiety
Weakness pronounced in right arm
Tremor in hands
Hand and feet cramps
Constant sinus infections
Fatigue
Sleep apnea
My cd57 was 20 and I have had 3 western blots come back equivicol. Any thoughts on my symptoms? He thinks I have lyme and Bart.

Hi Sailorkim,

Please, please go to an ALS specialist dr. My boyfriend was diagnosed with ALS 2 years after his brother was diagnosed with it. His brother did have it. He had bulbar onset. My boyfriend had weakness and muscle wasting and had several EMG's where the nerves did not seem to respond. This led to his diagnosis. He eventually went to Syracuse U Hospital where he was diagnosed with a very rare nerve disease MMN -Mulifocal Motor neuropathy. He had fatigue, twitching, tremors, cramps, anxiety, memory loss. It wasn't Lyme and it wasn't ALS. Someone at a teaching hospital or a really topnotch specialist in ALS will be able to rule it out. I understand your panic. I pray for a good outcome for you.

Girlie
My EMG was what said I had the als. He is a top als doctor but prior to emg he stated I didn't have bases on my exam and presentation. My ncv part if exam was right on the curve of normal which is not normal for my age. The Emg ( needle insertions) is where he saw what he stated was indicative of als). The symptoms I have had have been going on for years. Got worse this last year with heavy neuro involvement.
I am going to a third neuro at UTSW to get another opionion. My llmd stated 6times in my consult he didn't think I had als. The neurotin he has given has helped a lot with the periphal neuropathy symptoms which to me points away from als as it's not a feeling disease with pain in nerves etc.
I am going to treat the lyme and get all the extra testing done he has asked for and pray he is correct.

Hi sailor kim:

What do you take for the panic and anxiety? I feel it most of the day. What about you?$

Hi Sailorkim!
Welcome to our community!! I'm glad you found us.

Well honestly, the 3 equivocal Western Blots are enough to say that it's Lyme! Considering the issues with testing (there are numerous issues, just ask if you wish me to go over them), and the fact that Lyme has been shown over and over again to inhibit the immune system, finding Lyme treatment is something you should definitely be doing, in my opinion.

Although I seriously doubt you will find a doctor that believes in chronic Lyme at a University hospital - they are usually all ID docs and they are notorious for either completely denying chronic Lyme or believe that it's hard to catch and easy to treat - leaving many patients to seek out forums like this when they are left with ongoing symptoms that are only relieved by .....more abx!! But the ID doc's will argue that it's not an ongoing infection still!!

So I would greatly encourage you to find an ILADS (International Lyme and Associated Diseases Society) trained doctor. For information on finding an ILADS trained Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD/LLND 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 send me an email by clicking on my screen name or the small blue envelop 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 also email the Tick-Borne Disease Alliance at [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
​

As I said, 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. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your Lyme journey.www.ilads.org/lyme/ILADS_Guidelines.pdf

Sailorkim - try not to think about the worst case scenario - ALS. I, too went to a Neurologist to rule out MS, and ALS. He did some reflex, strength tests...and said "You don't have MS, I promise". (I had already figured that because my brain mri showed nothing on it). Then I asked about ALS and he said I didn't have it...but sent me to a Physiatrist for nerve tests. The Physiatrist stuck needles in my weak arm to check my nerves - don't know if that was the emg or the ncv - He just said I was fine, but I didn't get to see the results on paper.
He was kind of weird in his manner anyway. He said to me "You don't need to apologize. You're a very nice lady"....so strange - because I didn't apologize once...then he brought my husband into the exam room and told him, "Your wife is a nice lady, she's very apologetic...and I told her she doesn't need to apologize". He diagnosed me with frozen shoulder and sent me on my way. I wonder what he actually wrote about me...I should ask my PCP if she got a copy. I think he was trying to say that I was cuckoo.

So, hear I am 9 months later, and there has been improvement in my weak arm, and other things since treatment. I am pretty sure I don't have ALS...as in 9 months there would most likely be a decline.

So, if nothing else, time will tell for sure.

The other thing to think about - I did read that Lyme can cause ALS. Did you watch the video:
"Under our Skin"? - There is someone in that video who had ALS, and then they treated him for Lyme, and he was getting better. I don't think it's uncommon for people to be diagnosed with ALS and then treat for Lyme and get better. It also happens with MS. It's either a misdiagnosis, or the Lyme causes the MS, and gets better with Lyme treatment.

Please keep us posted on how you're doing. Are you seeing your LLMD soon? And is there a plan for treatment soon?

My LLMD says that all over fasticulations are lyme not als. Just wanted to add that.

I did read once on an ALS forum (when I was trying to diagnose myself :( that fasciulations for ALS come at the end of the disease process, not in the early stages.

While no one has ever tried to diagnose me with ALS, I have had the whole body doing fasciculations all at once. I would literally bounce or more like "vibrate" off of whatever I was sitting or laying on. It's very disconcerting.

Hopefully, Gardenpeace can reach that other member that she spoke of and they will be able to respond for you.

Hi Sailorkim, I saw on one of the posts that there is not pain with MMN. That is not the case with my boyfriend. There is pain, a lot of it. Somedays he hurts so bad that he just stays in bed and anything he does where there is exertion, he has pain within a few hours. He did IVIG twice and was allergic to it. He has muscle tremors & twitches all the time. He was also misdiagnosed by a top neurologist with PTS-Parsonage Turner Syndrom. He was operated on for an ulner nerve entrapment 17 years ago. When he was misdiagnosed with ALS he saw a neurologist who told him the same thing as above, he would have progressed much quicker it it was ALS. He is not on any treatment now and sees his dr who is the head of neurology in our area and is an ALS specialist who does clinical trials and works with Israel. His brother who was diagnosed with ALS progressed within a year to a wheelchair and after an 8yr courageous battle he passed away. No decline is a great sign it's not ALS. There is no proof positive test for ALS that I am aware of. I saw the quick decline of my boyfriends brother though and he went to top drs and was not diagnosed right away so you have to be your own advocate. I know there are great similarities in the 2 diseases and I know a person from our town who went to India for stem cell transplants who was diagnosed with ALS and he just found out he also has Lyme. Which came first, no one will ever know. My boyfriend read for 8 years about ALS-every day, every report by a reputable institution, every clinical trail etc so he could try to help his brother.

There has been a breakthrough in ALS last month. https://nequals2.com/the-urgency-of-now-petition-the-fda-to-approve-breakthrough-als-drug/

Good luck to you!

We do have a LLMD who was diagnosed with ALS and after being treated for Lyme he recovered and became a LLMD. He is featured in Under Our Skin. I forgot his name, I saw him speaking over 5 years ago as he is involved in ILADS. I believe (and I am not the only one) that most neurological problems including Alzheimer's and autoimmune diseases have their bases in Lyme or other infectious diseases. A pathologist got 10 brains from Harvard School of Medicine of Alzheimer's patients and found Lyme spirochetes in 7 of them!

I agree with the others: take some abx for a few months and see how it goes. Stick with your LLMD or pursue your condition parallel to treating Lyme and also consider the co-infections. A not so smart infections disease dr said to me once that I may have MS, just by looking at me. He kept insisting I don't have lyme because I was treated for it with a month of abx and it went away. After that, I saw a LLMD and I was treated for Lyme and I am well, and of course I do not have MS.

Hi Sailorkim, I am the one Garden and Traveler mentioned. It is late so I can't write anymore, but I will try tomorrow or the next day. You can also email me. In fact, If I don't, maybe Garden can bother me until I do. LOL I have been so scatterbrained lately with so much on my plate, but it's so important to me to help people - if I possibly can - with health and/or emotional problems.

Babana

Thank you! We all need to stick together. I am very glad I found this site. The support is just unbelievable. I will pray for your mom that she gets well very soon. She is lucky to have you in her corner.