posted
Hi all, Again, I don't know where to begin. I finally saw a LLMD this week. He saw my old blood work from a month ago and said he would probably treat me on that alone but we're doing some new labs first (He uses MDL). I feel good about my meeting with him. He said he will treat with oral if it comes back negative and IV if positive, based on my 4 previous infections and my predominantly neuro symptoms.
It is my symptoms that I want to ask you all about. I have talked at length on here with many of you over the last 6 weeks about my symptoms, twitching, muscle cramps, weakness, tingling, buring, trouble swallowing, etc. All ALS symptoms, and that's what freaks me out. We have a baby on the way and a 3 1/2 year old, I'm sure I don't need to elaborate beyond that as to how this is higly stressful for me. I have had some distinctly non-ALS symptoms like trouble concentrating, word trouble, tingling/numbness, and more, but the ALS-like symptoms loom large, especially lately.
So what's setting me off now is that for the last couple of days I have been having excess saliva and more trouble swallowing, and I've had a cough/hoarse voice off and one for two weeks, getting worse.
One problem I think I have is that I believe my stress exacerbates my symptoms, and I also believe that to sa certain extent I manifest some of the symptoms I fear the most, if that's possible.
Can anyone tell me if they've experienced this? I know that Lyme is by far the most likely cause of my symptoms. But these latest symptoms are all so ALS like (in combination with my twitching and muscle cramps they read like the early warning list for ALS) that I am just having fits of anxiety over it. I would love to hear from anyone who has experienced these symptoms in combination that actually has Lyme. It would put my mind at ease while I wait 10 more days to see the doc again.
My poor wife has had to put up with me freaking out over this. She tries to be supportive while she insists I am over-reacting and that I have Lyme and should chill until I see the doc again, bless her soul. But the new symptoms make it very hard to do. PLus, I cannot keep dumping on her while we are pregnant, that's not good for baby.
Anyway, I'd love to hear from anyone with a similar story and some words of encouragement. And please, only positive input at this time. Thanks so much.
Kind regards, Kenny
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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posted
Hang in there - your just at the begining of treatement. I also had a period before being treated where I came down with the sore throat, so much saliva that I thought I would choke on it. They thought I had mono due to high EBV titer level, but only on IGG. All the other tingeling stuff is big lyme sysmtoms. Also have all of them.
Posts: 582 | From milwaukee wi | Registered: May 2005
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Between my daughter and me we have had almost all your symptoms. My daughter saw over 42 specialists and (probably because she was in her early twenties) was never given the ALS diagnosis.
The hoarseness was an early developing lyme symptom.
I've had hoarseness, muscle twitching, muscle pain, heel pain, horrible headaches, toothaches (nothing ever found by dentist), memory problems, elevated blood pressure, extreme exhaustion, out of breath and pain the joint of my thumb (every one thinks that one is interesting), night sweats....
Some trouble with swallowing, but more like something was stuck in my throat.
Another weird one is when I'm speaking and get to the end of the sentence I feel like I'm running out of air and the last word or two just dies off. Sort of sounds like I'm slurring words.
I've been treated for almost two years. My new llmd will be retreating my bartonella and babesia.
My daughter has had all the above plus paralysis (one side only), myoclonic seizures, panic attacks (seizure related), chronic coughing.
I would bet on the lyme! Make sure you are tested/treated for coinfections!
My new llmd believes that is why my daughter is still not improving after two years of IV...bartonella has never been treated.
God luck!!! Email me if you'd like.
Posts: 132 | From Kentucky | Registered: Dec 2004
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Hi Kenny,
I can definately relate to the anxiety. Yes, lyme and AlS have similar symptoms. Many dx'd with ALS later find they had Lyme all along.
The anxiety is not good for your boday but I don't believe it is creating the symptoms.... lots of docs tried to tell me that. Yes I was anxious but my symptoms, as am sure yours are, were real.
Try to breathe deeply it really is relaxing. I hope this doesn't sound silly. Really it can help. Look up brething exercises. No, it won't take your anxiety totally away but any relaxation you can get is helpful.
I had/have many of the symptoms you describe includng the throat stuff. With treatment yu are going to bet better........... keep posting for support. Ask as much as you need. Lymenet will help you through.
Take Care ........ Be good to yourself and your wife,
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
Hi Kenny, Now, c'mon! If you have ALS then so do I and I really don't think I do. I have the throat problems and increased saliva. I think the increased saliva is exacerbated by eating sugar. Sugar seems to be an enemy of lymies. I'm glad you are getting treated - I'm still waiting for my LLMD appt (Nov 17). If you herx bad maybe that will be a sign that all your symptoms are indeed lyme. I definitely don't wish a bad herx on you but just reminding you that if it happens, it is a strong sign that you do have lyme. Sorry you are freaking out -it will be okay! Your twin symptom girl, Julie
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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posted
Thanks all for of your replies. And Julie, thanks for the tough love (and keeping it real). In answer to your question welcome, my breathing is fine. I'm still exercising, etc. My last diagnosis/treatment was in Oct 04. But these symptoms popped up and have been morphing since about 6 weeks ago. Treatment won't actually start for another week and 1/2 to two.
You folks are exactly what I needed. Please keep it up. I'll be sure to return the favor.
Thanks, Kenny
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Kenny, I had all of those. With your prior history, my bets are on Lyme. David
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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ALS is SUCH a rare disease.... I wouldn't worry, get the lyme treatment. I have all of those symptoms with the exception of swallowing issues, but many other people with lyme have that. I also have a lot of visual issues which are not ALS symptoms..
I hear you about being stressed, I was about to be married before this started and right now life is on hold. But I know I will get better and life will go on. You just need to hang in there, it is great you will be getting treated regardless of your test results.
Hang in there! -Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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Stress always increases my symptoms. Hang in there, you'll feel better after you see the doctor again and start treatment. Keep the communication open with your wife. It might help too to see a counselor who helps people with chronic illness.
Let us know how you do!
Posts: 449 | From Vermont | Registered: Nov 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Kenny, there is a "famous" ILADS doc who was diagnosed with ALS and given two months to live and was hospitalised from his extreme symptoms. I don't know what his symptoms were, but being given two months to live, they must have been REALLY bad. I saw this doc and heard his story forst hand while he was treating me this past spring.
Turns out he had Lyme, FINALLY got a positive PCR test, started treatment on IV rocephin and is back to work as a doctor, but now sees exclusively TBD cases.
ALS wouldnt come and go as your lyme has done would it?
Where are you in PA---that is my homestate and where I got Lyme first in 1991. Much luck to you! Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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I have swallowing difficulty, muscle twitching on my legs, leg cramps in my calfs and exess saliva that I contibute to the swallowing problem. I started with these symptoms 1 1/2 years ago. The nuerologist I saw said if I had ALS, I would not be able to swallow and probably would have died by now.
Keep your spirits up. I am depressed also and try not to think about the ALS. I had a positive western blot from IGeneX and am waiting to start IV abx in 2 weeks.
Let me know how you make out. I will keep you in my prayers.
Posts: 146 | From New Jersey | Registered: Jun 2005
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posted
Swallowing was a huge problem for me...could barely get food down. That's directly related to the invasion of spirochetes in the cranial nerve which controls swallowing.
Everything you list as symptoms sounds like lyme to me! Thought I'd post a list of symptoms in hopes it might ease your mind. Good luck and try not to worry! nan
SYMPTOMS::::::::
Musculoskeletal System Joint pain or swelling Stiffness of joints, back, neck Muscle pain or cramps Creaking, cracking joints Heel pain Spinal sensitivity Movement of pain or swelling to different joints
Neurologic System Headache - persistent/severe Bell's Palsy (facial paralysis) Burning or stabbing pains Tremors or unexplained shaking Numbness in body and/or extremities, tingling, pinpricks Weakness or partial paralysis Pressure in the head Lightheadedness, wooziness Poor balance, dizziness, difficulty walking Increased motion sickness Seizures, stroke symptoms Restless legs
Mental Capability Memory loss (short or long term) Confusion, difficulty in thinking Forgetting how to perform simple tasks Speech difficulty (slurred or slow) Stammering, stuttering speech Going to the wrong place
Psychological well-being
Mood swings, irritability Unusual depression Panic-anxiety attacks Overemotional reactions, crying easily Aggression, rage Too much sleep, insomnia Difficulty falling or staying asleep Obsessive-compulsive behavior Suicidal thoughts Paranoia Disorientation (getting or feeling lost)
Head, Face, Neck
Stiff or painful neck Headache, mild or severe Twitching of facial or other muscles Jaw pain or stiffness Sore throat Unexplained hair loss Scalp rash
Eyes, Vision Floaters Double or blurry vision Pain in eyes, or swelling around eyes Light sensitivity Flashing lights Tearing and/or dry Vision loss/Blindness
Ears/Hearing Decreased hearing in one or both ears Buzzing or ringing in ears (tinnitus) Pain in ears Sound sensitivity
Shortness of breath Chest pain or rib soreness Night sweats or unexplained chills Heart palpitations or extra beats Heart block, heart attack Valve prolapse, murmurs
Reproductive
Loss of sex drive Sexual dysfunction Unexplained menstrual pain, irregularity Unexplained breast pain, discharge Testicular or pelvic pain
General Well-being Extreme fatigue Symptoms change, come and go Pain moves to different body parts Unexplained weight gain or loss Malaise Chills All types of rashes on the body and /or scalp Swollen glands Unexplained fevers (high or low grade) Itching Continual infections (sinus, kidney, yeast, bladder, etc.) Increased sensitivity to allergens Exaggerated response to alcohol or sweets Nodules under the skin Early on, experienced a flu-like illness, after which you have not felt well since.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
Thanks all. I appreciate your thoughts and kind words. I have every reason to assume that this is indeed Lyme and that it will be handled. I just need to keep reminding myself of that. I will try to keep my cool. As you probably know, that can be hard to do at times, but it's absolutely the best thing for my body and mind. Enjoy your weekend. I'll send good thoughts back your way. Kind regards, Kenny Peace...
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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It always amazed me that almost every freaking day I'd have a new bizarre symptom. No one in their right mind could even dream up all the symptoms I experienced. I never even told anyone of all the things I experienced because I didn't think they would believe me.
Best of luck to you, and you are right to assume that stress is one of the worst things for Lyme.
-------------------- Nancy Posts: 963 | From N. Olmsted, OH USA | Registered: Jan 2003
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lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Kenny,
You have been given some great advice. I would just like to add, that stress can make your lyme symptoms more severe and even bring on new symptoms, or bring back symptoms that have been dormant for some time.
My 7 year old daughter ( who also has lyme) was diagnosed with Juvenile Diabetes 5 months ago, and the stress from having to cope with all of this, has brought back 2 of my lyme symptoms. And I have been off all meds for over a year and symptom free for 18 months.
So please try to relax a bit and try not to stress too much. I know it's hard. I have been dealing with lyme for 6 years and my 9 year old son and my 7 year old daughter both have it as well..... things will start to get better.
At some point we have to put faith in our doctors and a higher power..... to trust that they will get us through these difficulty times. Otherwise, we will kill ourselves from stress alone. Trust me, I am speaking from experience on this one!
I too am thinking that the majority of your symptoms sound lyme. And hope you will begin to feel better now that you are seeing an LLMD and on treatment.
Wishing you wellness and less stress!
~LymeBrat
Posts: 3154 | From NH , USA | Registered: Oct 2002
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posted
Thank you all soooo much for your support, including those of you who have sent me PM's with offers to talk, etc. I have not had a chance to respond to everyone but I wanted to say thanks. I will respond as soon as I have a moment. Today has been a tough day symptom-wise and I am trying to heed all of your wise and kind words. I promise to try to keep my head up and my stress down. The cursed symptoms (as you all know) make that very difficlut, but I will do my best.
Thank you all....
Kind regards, Kenny
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Kenny,
I've had them all too. The key is the non ALS symptoms. If you have those you don't have ALS.
It probably lyme but make sure your LLMD checks you for mycoplasma too (MDL has an excellent myco panel - that's where I got my positive PCR).
You have a long road ahead, but it will get better.
Hang in there.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
Thanks for your post Mathias. I do indeed have some non-ALS symptoms, but they are vastly outweighed by the ALS-like ones of late. Some new twitches focused in my throat (right where the swallowing trouble is) and my swallowing troubles are being compounded by anxiety and vica-versa I'm pretty sure. I will try to keep my head up. I'm going to see my PCP today to get something for anxiety to hopefully cool me down a bit until I see the LLMD again next week. Thanks for your post. Kind regards, Kenny
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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posted
PS: My LLMD uses MDL and said he is testing for all possible tick borne infections, so hopefully that will be included in the testing. My best, Kenny
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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