Could this be lyme and a co-infection???

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Regular Member

Date Joined Jan 2009
Total Posts : 27
   Posted 1/20/2009 9:28 PM (GMT -6)   
Well hello, I'm new here and haven't been diagnosed with anything, but I think I have good reason to believe Lyme just might be my poison. And that would be a good thing, because it would make everything fit into place and make sense turn. I live in Minnesota and have felt something is wrong for as long as I can remember and things are getting worse and picking up speed now the last year or two. I have had tests done here and there since high school (I'm now 28) but nothing ever produced helpful results...hell I was even diagnosed w/ narcolepsy when I was 19 (it was later reversed - I never believed for one second I had narcolepsy and never did take the meds as they made me feel extra shaky). But as far as getting any Dr to take a good look at everything and piece together all my weird symptoms, I haven't had any luck. I know I had embedded ticks twice that I can remember, and those were when I was about 10 or so. One was in my ear fold, the other in my scalp, we thought nothing of it and just plucked them out. I don't remember any rash though and we didn't exactly look for any, given the locations. I also have gone camping many many many times in MN and in other places of the US such as Oregon, Yellow Stone (and all the way out to there), MA (I went to school there for a while and was out there every summer as a child), GA....pretty much any hot spot for Lyme lol. So, let's get on w/ the symptoms.

Here's my list, I'm sure I'm leaving some out:

Muscle pain/cramps
Joint pain that comes and goes
Tremors - I HATE IT, I feel like the back of my brain is constantly vibrating, my hands, spine, everything grrr
Numbness and tingling in extremities (a bit better after going gluten free)
Lighheadedness/wooziness - I feel like I am drunk all the time
Poor balance, dizziness, difficulty walking straight - I swear people must think I am on something
Restless legs
Memory loss - ug
Confusion, difficulty thinking - this is so scary
Speech difficulty - can't get my mouth around the words it seems, get tongue twisted
Stammer/stutter speech - I can recover well lol
Difficulty falling and staying asleep - I used to sleep so sound but these past 2 years I can't
OCD - I tend to attribute this to my analness ???
Twitching - ahhhhhh it's so distracting, especially at night trying to fall asleep
Falling limb feeling - hate it
Sore throat - always a little sore, especially at night and in the mornings
Double vision/blurry
Light sensitivity - comes and goes
Low Vitamin D
Swelling around eyes - my right side of my face and eye is slightly sometimes but the other doesn't swell
Sound sensitivity
Diarrhea - I had constant total diarrhea from Nov to early Jan - better since gluten/casein free
Gastroesphageal reflux - just diagnosed w/ it, I also have a bump in the back of my throat from ??? Dr says not cancer
Shortness of breath - it's ridiculous, even when I am just laying in bed, feel like I'm not getting enough oxygen
Night sweats/Chills - this started this year
Heart Palpitations - this is getting so bad at night now, get a fast heartbeat when trying to sleep and when I awake
Unexplained menstrual pain/irregularity - once I went 6 months w/o a period and I get stabbing pains there randomly
Extreme fatigue - ah yeah
Irregular sleep schedule - just can't get it straight as hard as I try
Swollen glands
Rashes - oh the rashes lol I hate you my dear friend "rash"
Itching - I always itch
Reoccuring infections - I had a vaginal bacterial infection for over a month and couldn't get rid of it - was also allergic to the meds so they kept switching them.
Exaggerated response to alcohol - I can't drink anymore or have a single drop of caffeine or shaky/twitching/falling feeling is through the roof and can't sleep of course

Also, a side note, in early Dec I fell down the stairs and injured my ankle, it isn't healing properly so I had to have an MRI yesterday to look for torn tendons/ligaments...does lyme's make you not heal well?

Please go to the little photo album I've started w/ my skin those look like they could be bartonella?

The neurological symptoms have REALLY gotten worse the past year, and it's driving me crazy. I am kind of a perfectionist and very meticulous so all this forgetting and tremors and twitching and clumsiness is really putting a hamper on my analness tongue.

Some of the places I have been in the last month have been the ENT dr for the lump in the back of my throat/hoarseness/sore throat...I had to have a 24 PH probe and he said I have Laryngopharyngeal Reflux (LPR) and also noted during insertion of the probe that I had inflammation on the underside of my vocal cords. I have been to the regular Dr and had a negative lupus test (my mom and all 8 of her siblings have lupus) and celiacs test (I went gluten and diary free in Dec due to problems even though my celiacs blood test came back negative). They also checked my B12 which was in the 500's and my Vitamin D which was 29 (which is low). Last week I also went to a neurologist and she is testing me for MS (had MRI Friday) and Lyme but I think she is doing the serology test??? not the Western Blot. Not matter what the results I am still going to look into lyme's further. I also felt it had to be syphilis given the similar symptoms lol, so I had two HIV and syphilis tests done 3 months apart to make sure - I wasn't high risk but hey, who knows.

I have pretty much referred myself to all the places I have gone and would like to know a good LLMD in Minnesota so I can set up an appt. Being proactive is the only thing that has yielded any results for me.

So to sum it up:
1. Does this seem like Lyme?
2. Do the pictures look like lyme/bartonella?
3. Who is a good LLMD in Minnesota?
4. Is Igenex the best testing facility?
5. Do people really read and respond to these tongue

ONE LAST THING, I had a scratch a couple months ago that got WAY out of control and they put me on a bunch of antibiotics, I tend to be allergic to most of them (all penicillin, Flagyl, etc), but when they put me on Bactrim, I noticed my tremors and "back neck/brain" tingling went was very strange and I mentioned it to my mom at the time, so now after looking into lyme's it makes me think even more that this could be what is wrong w/ me.

Thea :-)

Post Edited (Thea_ls) : 1/21/2009 2:28:40 PM (GMT-7)

Veteran Member

Date Joined Aug 2007
Total Posts : 4415
   Posted 1/20/2009 9:47 PM (GMT -6)   
1. It could be.
2. Looks like they could be from Lyme/Bart.
3. Don't know...will defer to others since I don't live there.
4. For Lyme, it is considered one of the best. For coinfections, there are better labs ~ look into Fry Labs in AZ, MDL , or Congen.
5. Yes :)

Seriously, your symptoms sound like a combo of Lyme and one or two other coinfections (possibly more). You do need a good Lyme-Literate Physician to properly diagnose and treat you, so I hope someone posts back to you about doctors. Or you can look for posts from ticker and email her for suggestions.

Good luck,
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), IV Cipro (for G-tube site infection).

Veteran Member

Date Joined Feb 2008
Total Posts : 900
   Posted 1/21/2009 12:09 PM (GMT -6)   
Hi Thea, you have been through so much. I hope that you have found "your poison". You have many of the same symptoms I have experienced. I am traveling 9 hours to see my first LLMD in a little over a week and very excited about finally meeting with someone that knows how to treat me. I diagnosed myself online - had a tick latched on for over 24 hours (which I got at one of the worst infected places in the state) and later developed the exact rash pictured.
It is such a relief to find out what you have and really important to be with a doctor that knows how to make you well. Good luck!!

PS Although many doctors would jump to the conclusion that you are infected with lupus, like your mother and her family - I tend to wonder if they are infected with lyme which is often confused with lupus.
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