Question re: symptom severity

Are your lyme symptoms "Ambiguous" or "Acute"?
5
Ambiguous symptoms: Headache, joint pain, muscle pain, heart palpitations, depression, anxiety, etc. - 83.3%
1
Acute symptoms: bells palsy, paralysis, seizures, extreme pychosis, etc. - 16.7%

 
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WestCoastBabe
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/2/2009 4:13 PM (GMT -6)   
Hi all,
I haven't been diagnosed via lab tests yet but my symptoms (and seven years of ruling everything else out) is pointing towards lyme.  I have an appointment with a lyme MD next week.  My question to y'all is regarding symptom severity.   My joint pain, fatigue, heart palpitations, anxiety, depression, etc have reduced my activity level quite a bit.  I'm only able to work about 20 hrs/wk now and social life is next to nil.  All of this came on with a malaria-like illness in 2002, but I've never had more severe symptoms such as fainting, seizures, bell's palsy, paralysis, etc. 
 
I'm curious to know how many out there who are "positively diagnosed lyme" never had any of the more severe symptoms?
 
Thanks for your response!
 
 

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 12/2/2009 7:34 PM (GMT -6)   
Hi WestCoastBabe,

Most of us here have never had the more severe symptoms, although some do. I have had Lyme since I was young. I am 39 now and just started having worse problems this year. When I say "worse", I don't mean the severe symptoms but some days I can barely walk. I have neurological involvement now too.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35695
   Posted 12/2/2009 11:18 PM (GMT -6)   
And isn't that fun,CG???? *giggle**

Hi West Coast Bee,
I would have to be able to mark both spots! And decision making is not exactly my strong suit anymore!! =)

My 'severe' sx, which are wonderful at not staying more than 2 - 3 months, have been mild Bell's Palsy, minor seizures, and maybe a couple of more. Although I do need to tell you that I have been ill most of my life - just no one put it together.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 12/3/2009 12:16 AM (GMT -6)   
Define severe? lol I know my symptoms aren't severe but they sure do feel like they are!

Traveler: Im sorry you had to deal with Bell's Palsy and seizures. I don't know what I would do if I had to deal with that too.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 12/3/2009 5:38 AM (GMT -6)   
I'd have to mark both, also. It is believed that I've had Lyme for over 30 years. My gut likes to stop functioning completely or partially (swallowing difficulties, slow stomach emptying, sluggish bowels, etc.) which could considered to be a type of "paralysis" or "Bell's Palsy of the Gut." [for more info on this, see http://thehumansideoflyme.net/viewarticle.php?aid=62 ]. I've also had a couple of other really strange neurological events (Ataxia that lasted 24 hours, and whole-body tremors that lasted 10 days), both of which caused my doctor at the time to send me in for an EEG to rule out seizures/strokes (thankfully, the EEG was normal).

Also, I've had a 4-year battle with Reflex Sympathetic Dystrophy (also called Complex Regional Pain Syndrome) that may not have happened if I had not already had Lyme (& Bartonella), and it is very likely that I would have fully recovered after the 4 years without Lyme...I still have residual neuropathy, muscle wasting, and fluid retention in the area where the RSD was the most severe (my right foot/lower leg) even though the RSD itself is considered to be in remission. That said, the first inklings of the pain do start to creep back if I don't get out and walk around a little on it at least every other day (preferrably daily).

The other severe symptom I have is the propensity to lose tolerance for or develop allergic reactions to a long and growing list of foods. This started about 24 years ago. Sometimes it seems that no food "sits right," or may seem ok at first but then later on is no longer handled so well until I avoid it for a long time and try again after that. There are many foods I have never been able to add back to my list of ok or occasionally ok foods.

The rest of my symptoms fall more into the ambiguous category - joint pains, visual oddities, headaches, hyper-acute senses (smell, taste, hearing, etc.), fatigue, etc....

Take care,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently trying to wean off TPN.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, Milk Thistle, Ailanthus, homeopathy.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 12/3/2009 7:27 AM (GMT -6)   
I had whole body tremors too. That and the feeling like I was going to pass out was the scariest to me. I was admitted to the hospital before I found out I had Lyme Disease, for flu-like symptoms and stiff neck. They thought I had meningitis. It came back negative, thank God....well, that's because it was Lyme all along. I never got checked for it though. Anyway, one night I woke up with whole body tremors so my husband paged the nurse. They checked my blood sugar thinking it was low blood sugar but it was fine. I stayed shaking uncontrollably for a good 20 minutes and they never checked for anything else. Nothing was ever investigated further. It makes me so upset when I talk about that because I could have caught this early.

Razzle: Did they figure out what caused your tremors? I'm assuming it's neurological? I still have no clue what caused mine. They lasted for over a year and completely stopped all of a sudden.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 12/3/2009 6:30:10 AM (GMT-7)


WestCoastBabe
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/3/2009 1:01 PM (GMT -6)   
Thanks for your responses.  All I've heard for the past seven years is "depression causes pain" and "your symptoms aren't severe."  The ambiguous symptoms may not be "severe" but they have become quite debilitating.  I'm afraid I'm never going to get a diagnosis (whatever this may be) because I don't have any of the acute symptoms.  I do have my first visist with a lyme MD next week.  I hope it will go better than my last visit to the neurologist!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 12/3/2009 7:02 PM (GMT -6)   
Neurogical involvement can cause severe pain too. I am in severe pain 24/7. Inflammation can cause pain as well and many Lyme patients deal with inflammation. I truly would hate to see those doctors get bit by a tick because anti-depressants are not the cure all for Lyme Disease...that's for sure!!

Keep your appointment with the LLMD. That's the only way you will get the right treatment.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 12/3/2009 7:57 PM (GMT -6)   
CajunGrl,

Nope, no cause was ever found (I didn't know I had Lyme at the time). The jerk of a Neurologist I was sent to never even bothered to look at me when I was tremoring in his office...sent me home with a dx of essential tremor, which is usually an intention tremor (tremor when using muscles), but the tremors I was having only happened when I was NOT using the muscles...a clear mis-diagnosis in my humble opinion.

Take care,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently trying to wean off TPN.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, Milk Thistle, Ailanthus, homeopathy.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 12/3/2009 8:52 PM (GMT -6)   
My tremors were NOT caused by using my muscles either. They would come on for no reason what so ever. Well, the reason was probably Lyme related but I'd like to know what caused it. These doctors are so illiterate sometimes.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35695
   Posted 12/3/2009 10:16 PM (GMT -6)   
I don't know if my severe tremors where caused by Lyme & co's, or ust the amount physical & emotional stress I was under both times. Once was immediately after my son was born (he was literally stuck in the birth canal - so they had to pull him out - ICK!) .

The second time was after the death of my last husband. I couldn't even stay on a couch or chair, I was bouncing around so much!

Or is that TMI?????
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 12/3/2009 10:25 PM (GMT -6)   
Traveler,

Yours were probably stress related. I've had those before too and I've also had muscle shaking but the ones I described above were very different.

Btw, sorry you had to go through that.

Also, did you have any medication for the birth of your son? Sometimes the medication causes tremors.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 12/3/2009 9:49:50 PM (GMT-7)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35695
   Posted 12/3/2009 10:46 PM (GMT -6)   
It was most likely was the medication, Lord knows they were throwin' it at me!!! smhair Never mind the fact I was like a rabid dog!!!! shocked skull

I've had episodes of feeling like my bed suddenly having a "vibrate" setting, (Behave you girls!), but fortunately nothing like what you have experienced.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 12/3/2009 10:52 PM (GMT -6)   
I'd definitely take the trembling before I'd take the Bells Palsy and seizures you experienced. That's very scary!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Tala3
Regular Member


Date Joined Sep 2009
Total Posts : 233
   Posted 12/5/2009 2:31 PM (GMT -6)   
Razzle,
I think Neurologists are worse than Rheumatologists...while still running from doctor to doctor for 4 years prior to my Lyme's diagnosis, my severe dizziness was diagnosed by one as "the inability of my brain to keep up with moving objects." Here take these...um, ya, this started at the same time ALL of these very painful, weird, and scary/unexplained symptoms started, so I highly doubted my brain suddenly quit keeping up and everything else was unrelated! When my family doctor found out I refused to fill the prescription, she wrote in my records that it was time to move on and let go of this already. Seriously, this was less than 6 months after all this started! I have no faith and little respect for traditional medicine at this point.
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