Could this be Lyme?

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New Member

Date Joined Mar 2010
Total Posts : 5
   Posted 3/21/2010 12:46 PM (GMT -7)   
As promised, here is my story. I am new to this forum and welcome any insight, recommendations or overall thoughts. I am a 34 year old stay at home Mom of 3. I will start with a summary of my medical history... then end with a review of my symptoms in line item format for those who wish to skip to that summary :) I will never give up trying to identify the cause of my symptoms rather than masking with meds. My children deserve a Mom who is healthy and active! So far I have been lucky and I have been able to stay productive in my life despite my condition/symptoms. They have not been truly debilitating up to this point, but my anxiety is growing the longer my symptoms persist with no cause identified after almost 22 mos. It is so frustrating seeking so many medical opinions and always getting a blank stare with a bunch of "I don't know what to make of all this or I have never seen anything like this". Beyond beyond frustrating (as I know you all can relate)! Well here it is...

Abbreviated Medical History

1) Birth to July 2003 – Healthy with no issues
2) July 2003 – Admitted to hospital for high fever and vomiting , in hospital for 5 nights and released without diagnosis after having multiple labs and tests
run. Infectious Disease Specialist consulted with no diagnosis. Abdominal CT Scan showed small areas of hyperdensity in the calices
bilaterally raising the question of medullary sponge kidney or other such process as possibility. Clinical correclation advised. Labwork results:
RBC low, HGB L, HCT L, Neut H, Lymph L, Neut ABS H, Urea Nitrogen Low 2, CMV IgG ISR 1.15 (range 0-.9) Positive, Negative for Malaria.
3) Sept 2003 - Started seeing my PCP because of muscle twitches and spasms
-Labwork done on 9/2/2003 showed abnormal PTT 62.3 secs (range 0-52), PTT-LA Mix was normal at 45.6 (range 0 – 52), Factor V Leiden
was Normal , Protein S Free high at 151 (56-124), Protein S Total was 96 Normal (58-150), Homocysteine was normal at 9.3 (4.6-12.4)
4) Oct 2003 -Labwork done on 10/18/2003 Protein S Functional S was normal at 143 (range 60-145), Brain MRI performed and results showed numerous
tiny punctuate foci of T2 hyperintensity, no abnormal contrast enhancement, no abnormal diffusion-weighted signal, brain otherwise normal in
signal and size; Normal flow voids are present in the major intracranial arteries; IMPRESSION: Numerous punctate white matter lesions. May
represent microvascular process (migraine, hypertension, ischemia) or a demyelinating disease. Normal cerebral MR venogram.
5) May 2004 -Saw Hematologist who re-ran labs and said I was clear to go on birth control, but recommended baby aspirin on airline flights. Some abnormal
findings but they didn’t point them out to me. I figured this out summer 2008 with the help of my current hematologist.
6) Oct 2004 -10/28/04 another MRI with exact same findings of previous MRI in 2003; no significant changes; they were following up to previous abnormal
7) July 2005 -Delivered healthy baby boy via vaginal delivery with no complications and easy recovery.
8) Feb 2006 -MRI and MRV ordered b/c of some headaches, no significant change from previous MRI and MRVs performed in 2003 and 2004.
9) May 2008 -Emergency c-section due to my daughters hand being on her head (was induced for normal delivery two and ½ weeks early due to blood pressure starting to rise and borderline low amniotic fluid… induction didn’t progress b/c her hand was on her head; therefore, ending in a c-section). Immediately after being released from the hospital, I noticed the feeling of being a little dizzy/lightheaded/tipsy/hungover. Similar to being on a boat dock after a long day of deep sea fishing. Just a tiny bit off. I figured it was the pain medication. I was on Vicodin and 800mg Ibuprofen. I quickly weaned myself off of the pain pills because I was breastfeeding my daughter. Then the slight dizzy/lightheaded feeling was still constant. It has been constant since May 2008. Just the tiniest bit off. I can eat, drive, perform normal daily activities, just extremely frustrated at constantly feeling “hung over”. I had a tremendous amount of anxiety in the first months following my daughter’s birth, but have slowly gotten used to the idea I might be dizzy forever!
10) July 2008 -Neurologist tries to figure out my dizziness/vertigo and orders another MRI, MRV and MRA IMPRESSION: No significant change since the last MRI of 1/27/06; Several non-specific foci of increased T2/FLAIR signal abnormality scattered throughout the deep and subcortical white matter. Some of the possible etiologies include old microvascular ischemic disease in a patient with diabetes or hypertension, the sequela of migraine headaches, old injury, or an inflammatory process such as SLE or vasculitis. Not a typical pattern for MS. Small Pineal Gland Cyst. MRV IMPRESSION: Diminished signal within the left transverse sinus, left sigmoid sinus and left internal jugular vein as noted on the prior exam of 1/27/06. Probably secondary to congenital hypoplasia, however; dural sinus stenosis and/or distal occlusion of the left internal jugular vein is difficult to exclude.
11) August 2008 -Referred to Hematologist by my Neurologist b/c I have an abnormal PTT flag after 2 separate blood draws. These labs were run by my Neurologist trying to pinpoint a diagnosis for my dizzy/lightheadedness. He ran a ton of panels for autoimmune disorders (I have all my lab work if you would like to review). The only thing that came back abnormal was my aPTT. The new Hematologist runs some additional blood clotting tests and makes a diagnosis of APS (Antiphospholipid Antibody Syndrome). Prescribes a full baby aspirin and Plavix once daily. I seek a 2nd opinion from a Hematologist at UT Southwestern. He re-runs many of the labs 1st hemo ordered and believes I do NOT have APS. He said my abnormal lab findings could be related to my recent pregnancy. However, he is going to monitor me every 3 months for an indeterminate time to make certain my labs correct and I am monitored. He is being cautious b/c I had an abnormal PTT finding after being hospitalized in 2003. Before seeing 2nd Opinion Hematologist, the 1st hematologist ordered an additional MRI, MRA and MRV. All findings matched my previous MRI findings but b/c he didn’t read my impressions from Neuros office ordered a CT Angiogram of the head and neck due to the congenital issue in my left internal jugular vein. Both CTAs w/wo contrast findings were normal. Also, 1st Hemo found some thyroid nodules during an office examination. I have since seen an Endocrinologist and he believes they are non-specific and is not concerned about malignancy. Possible goiter. Will have follow-up in about 9 mos to 1 year. (Update: followup sono showed no change. Will repeat in year. If still normal, no more sonos).
12) Sept 2008 -Neurologist ordered a MRI of my thoracic spine still considering MS. IMPRESSION: Unremarkable MRI examination of the thoracic spine. Alignment normal. The conus terminates at approx T12-L1. And, MRI of cervical spine IMPRESSION: No significant interval changes. There is evidence of minimal disc degeneration at C3-4 and C4-5 with some uncovertebral hypertrophy and minimal bulging of the annuli, but no significant stenosis. The remaining intervertebral discs are normal in height and posterior contour.
13) Dec 2008 -Continuing to be monitored by Neurologist and 2nd Opinion Hematologist. Both Dr’s have not given me a diagnosis for my current condition. It is Neuros opinion that my MRI findings are non-specific and could be due to my unknown virus in 2003. He believes the fact that all subsequent MRIs have remain unchanged makes MS unlikely. He say’s I don’t present like his MS patients. Hematologist at this time does not believe I have APS. He is going to continue to monitor me every 3 months b/c my Beta 2 Glycoprotein IGA test is still coming back abnormal. Low titer findings, but my PTT is now normal. He is hoping this is related to my pregnancy in 2008.
14) January 2009 Visited Orthopedic Specialist in Frisco regarding hip pain, popping and pubic pain. X-ray shows the bottom of my pelvis is off by 2.35mm. Diagnosed with greater trochanteric bursitis, sacroiliitis on right side, Pubic Symphysis dysfunction vs Osteiitis Pubis, and Post-partum coccygodynia. She referred me to a PT and I have had no change.
15) Feb-March 2009 -Sought care of Neurochiro with no change in case this dizziness/imbalance/lightheadedness was due to a spine / neck issue. Another theory shot!
16) April 2009 -Visited Neuro-otologist that comes highly recommended at UT Southwestern; ran 4 inner ear tests (Posturagraphy, Tilt Table, Hearing Test & VEMP... all normal except VEMP); Vestibular Evoked Myogenic Potential showed my inner ear nerve on both sides to be completely dead; couldn't even pick up noise; Dr. believed my symptoms were consistent with this finding the slight inbalance/dizzy/tipsy feeling but he didn't know how to treat me b/c the VEMP test is so new clinically; he isn't sure if it will resolve but suggested vestibular therapy and said he believed it might get better in 3 to 5 years; he said 4 things could have caused it... inner ear virus (unlikely b/c on both sides)... hypotensive event (possible during c-section but my records don't show my BP was significantly low ... I pulled them)... blood clot (unlikely b/c again both sides were affected/bilateral finding)... and I can't remember the 4th but it was ruled out. The vestibular therapist I saw about 3 or 4 times. It didn't help resolve the feeling. I'm wondering if my VEMP's could be absent due to MS or Lyme. Also, sought the care of an ENT right after having Kate and my ENG was normal. All testing was normal. The ENT said "he believed my condition was neurological, most likely MS in his opinion and it would probably rear it's ugly head down the line. He said he sees many patients with MS that hang in limboland for years before diagnosis and that is what he believes I have".
16) May 2009 -Discovered I was pregnant with 3rd child... total surprise.
17) May 2009-Jan 2010 -Still tipsy/lightheaded/dizzy for pregnant but overall it was primarily uneventful and normal; was followed by a Hematologist due to my slightly elevated anti beta 2 glycoprotein IGA; My IGA did elevate a bit to low 30s (anything over 18 is abnormal) but then it went back down to normal throughout pregnancy; I was on a baby aspirin just in case. I never had to go on Lovenox (blood thinner) b/c my IGA antibodies went back down to normal. Only receive injections if over 35.
18) Jan 2009 -Dizziness seems worse at times right before due date... & I notice a little numbness around the top of my lip.
19) Jan 12, 2010 -Vaginal Birth after c section was successful; no issues and uneventful; Caroline joins our family.
20) End of Feb 2010 -Notice numbness/tingling/sticky feeling over my top lip and down the left side of my chin to upper part of my left neck; little numbness/sticky feeling to left of my left eye comes and goes; cold sensation comes and goes in my chin; numbness comes and goes around lips/chin; I have noticed my dizziness seems a bit worse and a little weakness possible in my left arm and hand. I can't tell if this is from anxiety or truly happening. Sometimes I feel it is a little slow or weak.
21) Present -Living daily with tipsy feeling since birth of my 2nd daughter, Kate in May 2008... every single day since her delivery I have felt "hungover" and just off. My neuro still doesn't believe it looks like MS but he has suggested I go to the MS Clinic at UT Southwestern. He believes Lyme is highly unlikely b/c of the labs run in the hospital in NY and my geographic location. Says I can find a "quack Dr" who doesn't have rounds at any of the local hospitals that is a warning flag to him not having an association with a hospital who will pump me full of antibiotics but he wouldn't recommend I go that route; He did agree to refer me to a credible Infectious Disease Specialist who I am going to see on Tuesday, 3/23/10. I just had labs run at my Primary Care Physician do to the new symptom of numbness in my mouth. Everything was normal (CBC, ESR, Electrolytes, Urine, etc etc). My glucose was a bit high at 108 I believe and my ANA direct came back positive for the very 1st time ever, but the Dr. still considered it normal b/c my titer level was 4. Anything less than 4 is considered neg per lab. 5 to 9 is unequivocal and 10+ is positive. I am still going to consult with a Rheumy again in April. I've always wondered if this was an autoimmune disease.

Symptom Review:

-Tipsy/Lightheaded/Dizzy since birth of 2nd child, May 2009 - consistently dizzy. always there, but varies in degree. I have had some great days where it's there at 10%, but it always returns back.
-Muscle twitches/spasms since 2003 virus... worse with stress... but generally the same since virus in 03. Better when well rested and hydrated.
-Numbness/Sticky Feeling/Cold Sensation in upper lip, chin and down into left side of top neck. Also to the side of my left eye.
-Same feeling stated above of numbness/sticky feeling (never cold yet) in the right side of my lower calf. Comes and goes since birth of daughter.
-Slight blurry vision since birth of my daughter in May 2009, worse under flourescent lights, I believe my eyes have a problem properly dilating b/c it seems worse under flourescent lighting and bright lights). Sought neuro ophthamologist and all tests were normal. Prescribed reading glasses but I did have a stigmatism. Some days better than others. When I am real dizzy, my vision is worse. Never to the point of not being able to see. I can still see good but I have to focus harder on the bad days. NEVER experienced double vision yet.
-The feeling of peppermint oil being in my eye when I lay down at night. I notice that if I am laying on my right side it will be in my right eye and even kindof seep into the right side of my right eye. Like their is liquid in my head that is floating around. Yes, super strange... but thought I would include. Peppermint Oil or cold sensation, whichever would work to describe the feeling. Like you are sucking on a mint and inhale that feeling in your throat is what I feel in my eyes at night. Varies in which eye based on which side I am laying on. This started after the birth of my 2nd child too.

Also, sought acupuncturist and she believes it is in my neck. I do get a bit of relief with acupuncture from the anxiety and a bit with the dizziness. Another theory of metal poisoning from fillings was explored. All my metal fillings were replaced. I have never undergone chelation or any heavy metal testing, but strange this would be it b/c it started the moment I had my c-section.

Your thoughts and recommendations would be greatly appreciated.

Thanks for your time in advance!


Post Edited (Lararobin) : 3/21/2010 2:50:07 PM (GMT-6)

Veteran Member

Date Joined Mar 2009
Total Posts : 4717
   Posted 3/21/2010 1:11 PM (GMT -7)   
Hi Lara,

If you don't mind, could you please take the doctor's names out of your message? We just use initials here. Thanks hun and I will reply to your post after I have read it completely.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

New Member

Date Joined Mar 2010
Total Posts : 5
   Posted 3/21/2010 1:50 PM (GMT -7)   
Oooops... I cut and copied that from an old email to another specialist. So sorry! I should have caught that first. I hope every name is removed now. Thanks.

Forum Moderator

Date Joined May 2007
Total Posts : 35859
   Posted 3/21/2010 2:36 PM (GMT -7)   
HI Lararobin,
Welcome to the HW Lyme forum! I'm so sorry for your need to explore the possibility of having Lyme, but you have come to a good place to start.

If you haven't already, I would highly suggest you read the thread "New to Lyme? Start here" as it has a lot of very valuable info there. It does sound like you are very active in your own health care & should you find you do have Lyme or any other tick-borne illness, this will benefit you greatly.

Most docs have no clue about Lyme or that there are more than just a couple of tick-borne illnesses. Your reading more on TBI's will most likely benefit you greatly.

It does sound like you really need to be tested by a doc that knows what he/she is talking about when it comes to this type of illness. It would be really good if you could get in to be tested by a LLMD (Lyme Literate Medical Doctor), as they know which tests to order. They may diagnose you clinically (even the CDC's website says Lyme is diagnosed by clinical findings), but if blood tests come back positive, it could help if you have health insurance.

I was diagnosed clinically & didn't test positive until a full year of strong abx, as the infection was buried deep in my tissues, & was possibly in it's cystic form the other times I was tested. I was untreated for many, many years though.

Once again, please read the thread "New to Lyme?" as it was put together by those of us here, hoping to compile some basic, yet important info.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.

New Member

Date Joined Mar 2010
Total Posts : 5
   Posted 3/21/2010 4:06 PM (GMT -7)   
What tests were performed to finally reach your clinical diagnosis? Can you explain what cystic form means?

Forum Moderator

Date Joined May 2007
Total Posts : 35859
   Posted 3/21/2010 4:46 PM (GMT -7)   
Since I had already been tested with the WB (not sure if an Elisa had been done or not), and it came back negative, the LLMD I had started to go to just took down my symptoms, talked to me about where I had lived & how many times I thought I may have had a tick attach. I couldn't answer the last question (no matter how many times I was asked- & still can't!), because I grew up with "tick checks" & having ticks removed. I also now know that I was 5 years old when I contracted RMSF only I had the spotless variety. My LLMD at the time (He passed away a year or so ago), dxed me with Masters Disease & started tx right away. The only tests I have had (except for the one discovering the facial palsy) have only been blood tests, as there isn't a LLMD anywhere near where I live.

On the question of what cystic form means:
This is from the website -

" Borrelia Burgdorferi, the causative bacteria in Lyme Disease, is capable of transforming into three distinct bacterial forms: spirochete, cell-wall-deficient, and cyst. This transformation occurs for the purpose of bacterial survival and proliferation in the human body. "

Here is how they describe the cystic form " Dormant form bacteria are not mobile and do not cause symptoms. Can survive antibiotics, starvation, pH changes, hydrogen peroxide, temperature variation, and most other adverse conditions. Converts back to spirochete form when conditions are favorable. "

" Each form has different characteristics and vulnerabilities; hence, each form must be treated differently. "

I don't necessarily agree with what this website is saying about how to treat, but that doesn't mean none of their information is correct.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.

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