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Could I have Lyme or some other Neuro-Lyme type illness? Part 2

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Posted 8/22/2016 7:29 PM (GMT 0)
Link to original thread: www.healingwell.com/community/default.aspx?f=30&m=3684501

I'm starting this thread in case I have more questions, which I'm sure I will.

There is one question I posted in the old thread that didn't get an answer yet and I was really hoping it would. I'll quote it here:

Bobby88 said...
I also meant to ask about certain movements. I've noticed sometimes if I nod my head, my head will involuntarily nod a few more times than necessary. I don't think it's really noticeable to anyone but me. It also happens with certain arm and hand movements as well. It's like they get "stuck" a little on a certain motion for slightly longer than necessary. A good example would be a few months ago (I think it was May 6 when I had that weird arm and leg spasm in bed) when I lifted a case of beer out of the car with my left hand. Even for a few minutes after I put it down, the fingers on that hand still kind of kept making that flexing motion for a few minutes, almost like it didn't realize that there wasn't anything more to grab or pick up. Does that make any sense?

Also, this is to Traveler: I took my temp this morning before I got out of bed. It was in fact 97.8. Perhaps you're onto something.

Post Edited By Moderator (Traveler) : 8/22/2016 1:58:20 PM (GMT-6)

Posted 8/22/2016 8:05 PM (GMT 0)
I only edited your post so I could make your link into a hyper link.

To address the portion of your post that you quoted, that sounds like the nerve issues that are common with Neuro Lyme and Bart.

With the similarities in our cases, and what you were explaining, I thought it would be a good idea to check on!! Please let us know what pattern your temps take!
Posted 8/22/2016 8:34 PM (GMT 0)
Bobby88, when I was first diagnosed 5 months ago I was having issues like that. There were times that I would feel something in my hand when there was nothing there and vice versa. It is my belief that the lyme and co-infections mess with the nerves in a way that send the wrong signals from the brain.

It is just so strange. There are even times that I will be thinking of a word or sentence and another one comes out. Its like my brain will remember a sentence I had used previously and then use it to replace something that I wanted to say.

Hang in there! There will be a lot of strange things that may happen at different times but with treatment it will ease up in time. There is hope!
Posted 8/22/2016 8:52 PM (GMT 0)

Traveler said...
With the similarities in our cases, and what you were explaining, I thought it would be a good idea to check on!! Please let us know what pattern your temps take!

I've noticed that once in a while after I've eaten a Subway sandwich (they usually do it the most often), I feel feverish and flu-like for a short while afterwards. My nose even gets a little stuffy and there's more phlegm in my throat than usual. I also feel a little feverish once in a while when I've stood up after lying down for several minutes. Yesterday, I bought a new thermometer and took my temp when I got it home. I was a little sweaty from the humidity outside and wasn't sure what to expect. It was 98.8. about a half hour later, I got that random feverish and cold feeling again. Temp was 97.9. I took it before I went to bed last night and it was 98.1. Even though it's just been one day since I've started tracking it, it seems that my body temp hovers much closer to 97.9 than the more standard 98.6.
Posted 8/22/2016 8:57 PM (GMT 0)
Just out of curiosity, I took it now and it's 99.2. But I don't feel feverish at all. What gives?
Posted 8/22/2016 8:57 PM (GMT 0)
I'm often 98.0 or 98.2.


In the a.m. I'm often 97.5.
Posted 8/22/2016 9:41 PM (GMT 0)

Girlie said...
I'm often 98.0 or 98.2.


In the a.m. I'm often 97.5.

Have you ever noticed an occasional feverish feeling after drinking a lot of ice water or standing up after changing positions such as lying down after standing or sitting for a long period of time?

I also occasionally get the urge to pace. My body almost doesn't like to stand still to wait for something a short as waiting for the microwave to go off in one minute. Like RLS, but not painful and with the whole body. Does anybody else get that?
Posted 8/22/2016 10:16 PM (GMT 0)
I feel hot often...and often get the sweats...but my temperature never goes into the 'fever' range.


I have had my thyroid tests done 3X - TSH, FT3 and FT4 and all is good. (In addition, I am not fatigued...no weight gain...no signs of hypo.)
Posted 8/22/2016 10:30 PM (GMT 0)

Bobby88 said...
I've noticed that once in a while after I've eaten a Subway sandwich (they usually do it the most often), I feel feverish and flu-like for a short while afterwards. My nose even gets a little stuffy and there's more phlegm in my throat than usual. I also feel a little feverish once in a while when I've stood up after lying down for several minutes. Yesterday, I bought a new thermometer and took my temp when I got it home. I was a little sweaty from the humidity outside and wasn't sure what to expect. It was 98.8. about a half hour later, I got that random feverish and cold feeling again. Temp was 97.9. I took it before I went to bed last night and it was 98.1. Even though it's just been one day since I've started tracking it, it seems that my body temp hovers much closer to 97.9 than the more standard 98.6.

This sounds like possible food allergies. I went onto the Subway site and found out what was 'safe' for me to eat, as I have a known soy allergy and all their breads, except one, contain soy.

The temperature swings during the day could be from a number of things, but I'd be concerned about your adrenals with the pacing you mentioned. It's not a "classic" symptom, but it could be a clue that your adrenals are struggling. If so, they need to be tested with a 3 or 4 time a day saliva collection test - it's the only accurate testing for adrenals. If your doctor won't use the saliva test, you can order that yourself as well.

There are many symptoms of adrenal fatigue that cross over with Lyme, but here is a list of symptoms for adrenal fatigue - and more information about it than I knew what to do with! LOL!

/www.drlam.com/articles/adrenal_fatigue.asp

I have not used this doctor, nor purchased any of the medicines he sells, but his site provides a lot of very accurate information.
Posted 8/23/2016 1:12 AM (GMT 0)
The adrenal thing makes sense with the stress I've had to endure for the past year or so. From about early 2015 to early 2016, my work schedule was erratic. We once had three people quit in two weeks. I had to sometimes work back-to-back doubles for a manager that would often leave work early for such important things as manicures and looking at a new house with her husband. Sometimes, I'd work 10am to 10pm and have to come back and work 6am to 4pm the next day! Thankfully, she was fired in early March. Last August, my stepdad was diagnosed with throat cancer. He beat it, but not before he got pneumonia a few times and collapsed in the kitchen and had to be rushed back to the hospital. His 90-year-old mother, my step-grandmother, came down for Christmas and on December 26, began exhibiting signs of a stroke (sudden disorientation, facial drooping, incoherent speech, etc.) and had to be rushed to the hospital. Turned out to be a UTI which apparently often go undetected in older women and can closely mimic a stroke. She was released four days later and is fine now.

So, yeah, that was my year. My stepdad being diagnosed with cancer was only a matter of time since he'd been losing his voice for about a year-and-a-half and refused to have it checked. He finally had such trouble breathing that on August 10 of last year (his birthday), he broke down and asked my mom to call an ambulance. So that had been weighing on my mind for some time too.
Posted 8/23/2016 3:41 AM (GMT 0)
Girle - I'm having that same problem with my temperature and sweats. It stinks! The weird thing is my skin is cool to the touch. My temp was 95.5 until June and now I'm back to 98. woohoo.
Posted 8/23/2016 4:48 PM (GMT 0)
If this is Lyme, could I have had it for a while and only started showing symptoms in March when I got that flu-like illness? Up until then, I was at the local park on my bike nearly everyday. The park includes a nature trail and I would sometime sit and rest on a wooden bench under a tree on said trail. It wouldn't be out of the realm of possibility that I came into contact with a tick without knowing. I'm also originally from Pennsylvania, but I've lived in Florida for 11 years and even when I lived up north, I didn't spend nearly as much time outdoors as I have since coming down here. I can think of times when I played outside in the Poconos when I was little, so I don't know if that means anything.

Those striations on my side seem to faded more into my skin and are less obvious. Perhaps they were only stretch marks after all and not Bart. The little purple blood blister thing, however, appears a little bigger and darker.

Post Edited (Bobby88) : 8/23/2016 11:48:25 AM (GMT-6)

Posted 8/23/2016 5:43 PM (GMT 0)
"Real" stretch marks don't fade away quickly. I've had 2 kids - I know! LOL!

The "Bart marks" as they are sometimes referred to as, can come and go. I don't often get them, as I get spider veins that come and go with my Bart herxes mostly.

And don't forget, there are many insects that now carry these infections, including mosquitoes!
Posted 8/23/2016 5:51 PM (GMT 0)

Traveler said...
"Real" stretch marks don't fade away quickly. I've had 2 kids - I know! LOL!

The "Bart marks" as they are sometimes referred to as, can come and go. I don't often get them, as I get spider veins that come and go with my Bart herxes mostly.

And don't forget, there are many insects that now carry these infections, including mosquitoes!

I just edited and added more to my last post. I must have hit the submit button at the same time you responded. Don't you hate when that happens? LOL
Posted 8/23/2016 7:43 PM (GMT 0)
LOL! It happens all too often here!

Purple blood blister thing? Can you describe this better? LOL! I know that's hard.

There's really no way to tell when we got infected, but with all of your symptoms, it's possible you've had it for quite a while, possibly for many years.

Either way, the process is still the same, although the longer a person has had these infections, the progress is usually slower as we have more to get balanced out in our bodies and likely have to move through treatments slower due to the herxing. But that in no way means that healing isn't possible!
Posted 8/23/2016 8:15 PM (GMT 0)
Although Lyme symptoms usually wax and wane, is it normal to have one or more symptoms that don't and are just sort of there all the time? My memory issues are pretty much ever-present, but the tingling, numbness and some of the dizziness and other crap seem to come and go every now and then.

And just for clarification, is Lyme Encephalopathy (LE) the technical term for brain fog? I've heard them used interchangeably.
Posted 8/23/2016 8:46 PM (GMT 0)
Yes, it's quite normal to have a few symptoms that seem to be constant, although those sets of symptoms can also change from time to time if the person has been having symptoms for a long time.

No, Lyme encephalopathy isn't the same as brain fog. Lyme encephalopathy describes a set of symptoms, where as brain fog is one symptom.

www.ncbi.nlm.nih.gov/pubmed/9166957
Posted 8/23/2016 10:02 PM (GMT 0)

Traveler said...
Yes, it's quite normal to have a few symptoms that seem to be constant, although those sets of symptoms can also change from time to time if the person has been having symptoms for a long time.

No, Lyme encephalopathy isn't the same as brain fog. Lyme encephalopathy describes a set of symptoms, where as brain fog is one symptom.

www.ncbi.nlm.nih.gov/pubmed/9166957

The reason I asked is because when I first started with the brain fog in May, it would usually go away almost completely or at least greatly subside at night (around 8pm). Then in about early to mid June, it just decided to stay and worsen.
Posted 8/24/2016 3:32 AM (GMT 0)

Denikeef said...
Bobby88, when I was first diagnosed 5 months ago I was having issues like that. There were times that I would feel something in my hand when there was nothing there and vice versa. It is my belief that the lyme and co-infections mess with the nerves in a way that send the wrong signals from the brain.

It is just so strange. There are even times that I will be thinking of a word or sentence and another one comes out. Its like my brain will remember a sentence I had used previously and then use it to replace something that I wanted to say.

Hang in there! There will be a lot of strange things that may happen at different times but with treatment it will ease up in time. There is hope!

How long had you been having symptoms before diagnosis? Interestingly, you were diagnosed at the same time my whole journey started, and I seem to be progressing rapidly.

Have you ever gone to read something either to yourself or out loud and said a word that wasn't even on the page? Like it came out of nowhere? I miss reading my true crime books. Thank God for audio books.
Posted 8/24/2016 4:46 PM (GMT 0)
I just met with the nurse practitioner who gives me my meds at the mental health clinic. Although her ca't prescribe medical treatment, he did write a paper suggesting that whatever doctor I go to with my new insurance run an EKG since my resting heart rate is usually over 100 and my blood pressure seems to be getting higher all the time. He also got copies of the blood work from my most recent hospital visit where they did the CT scan. Apparently, he said my urinalysis test showed some bacteria in my urine. The doctors never told me this and he said it probably wasn't that serious or I'd be much, much worse by now. But still, I would have like to have known about it. That bugs me.

Post Edited (Bobby88) : 8/24/2016 11:21:58 AM (GMT-6)

Posted 8/25/2016 3:44 PM (GMT 0)
I also noticed at work or under stress, my left hand and wrist tends to become a bit paler than the right.

Part of my is wondering if it's Lyme now since Lyme generally has good days and bad days. I don't really have any good days.

Post Edited (Bobby88) : 8/25/2016 9:49:42 AM (GMT-6)

Posted 8/25/2016 4:24 PM (GMT 0)

Bobby88 said...
I also noticed at work or under stress, my left hand and wrist tends to become a bit paler than the right.

Part of my is wondering if it's Lyme now since Lyme generally has good days and bad days. I don't really have any good days.


Prior to treatment and early in treatment I didn't have a single day with no 'flares' - some days were better than others, but every late afternoon/evening my symptoms would flare.

It can take awhile on treatment for some people to have 'good' days. I wouldn't rely on that to discount lyme.
Posted 8/25/2016 4:52 PM (GMT 0)

Girlie said...

Bobby88 said...
I also noticed at work or under stress, my left hand and wrist tends to become a bit paler than the right.

Part of my is wondering if it's Lyme now since Lyme generally has good days and bad days. I don't really have any good days.


Prior to treatment and early in treatment I didn't have a single day with no 'flares' - some days were better than others, but every late afternoon/evening my symptoms would flare.

It can take awhile on treatment for some people to have 'good' days. I wouldn't rely on that to discount lyme.

Is it possible to deteriorate like this in a matter of five months though? Remember, it was March that I got the initial cold. And it was in May that the cognitive problems started. I suppose it could have been in my system well before March and only then decided to become symptomatic.

My insurance starts in a week, so maybe then I can get an LLMD. The nurse at the mental health clinic I went to yesterday looked at the list of symptoms I wrote out and said that once I get my insurance, a PCP may refer me to an endocrinologist. I know they study hormones, but what else would an endocrinologist look at if someone came in with my list of symptoms?
Posted 8/25/2016 5:20 PM (GMT 0)
My symptoms came on fast:

April, 2013 - severe pain - neck/shoulder blade area (radiculopathy) - arm, left hand

By July - add: sensation of lump in my throat, anxiety, depression, apathy, muscle twitches, cheek numbness/sore jaw on left side, weight loss (14 lbs lost from april to June)

By Sept - add: tremors, muscle weakness, vibrations in my body. Had to book off from work.

The symptoms continued to 'pile on' over the next several months...as I didn't get diagnosed until july, 2014.


Yes, a lot can happen in 5 months when Lyme runs rampant in our bodies.
Posted 8/25/2016 5:37 PM (GMT 0)

Girlie said...
My symptoms came on fast:

April, 2013 - severe pain - neck/shoulder blade area (radiculopathy) - arm, left hand

By July - add: sensation of lump in my throat, anxiety, depression, apathy, muscle twitches, cheek numbness/sore jaw on left side, weight loss (14 lbs lost from april to June)

By Sept - add: tremors, muscle weakness, vibrations in my body. Had to book off from work.

The symptoms continued to 'pile on' over the next several months...as I didn't get diagnosed until july, 2014.


Yes, a lot can happen in 5 months when Lyme runs rampant in our bodies.

What's weird is that in May when the cognitive symptoms started, they used to go away later in the day or at least get much better. Then around early June, I was basically screwed up all day. Up until I was put on Visteril along with my Trazodone, I was constantly waking up every hour in the middle of the night.
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