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chasing down Sjorns or Lyme?
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chasing down Sjorns or Lyme?

Age: 65; skin and bone (5'6", 104#) ; but walk about a 1/2 per day; - and have  GP scratching her head. Only med: NSAID.
  Have physical symptoms: knees Arthritic-acute; not bone to bone yet, and hot to the touch. hips: hot, burning sensation frequently; Same with back of neck and all of spine. Chest plate pain. Occasionally sore teeth, all. Very slight Bell's P-intermittant. Memory mood Issues. Cataracts & mild glacoma (meds keep pressure down). Have had dry-eyes since 40 (not dry mouth), and dry skin. Mild toe nail ischemia. Hot and cold issues at night. Exposed to ticks 3.2 years ago. Persistent swollen glands, groin area.
  Lab (outside normal limits): RBC- sL (slightly low) 3.8; HemoglobinESR 11.3 sL;  ESR way H (106); Moncyte % 14 H; Abs. Monocyte 0.7 H; ; Borellia Burg 41; IgG High but ONLY band; C-Reactive Protein WAY-H (46). ANA screen  A high.
   Knee synovial:  ANAC Screen Positive; atyp ANCAP titer 1:40 H; RBC too high to count. WBC: 11250 H.
    (Kidney, Liver functions: good; serroneg for STD's, HIV, yada yada)
CT scan, Pelvis-Abdomen: "suspicious for mesenteric ischemia. " else: OK

MRI/MRA not done yet -held-up by insurance.
    GP not sure; Neuro sez see Inf. Disease; Neur-Arth sez Sjorns.
    I'm dying here; 10 brain cells at a time. Any ideas will be acted upon; GP is a good one.
Thanking you in advance,
        carey    
  
11 Comments Post a Comment
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434278_tn?1324709825
Hi Carey, It is obvious you have inflamation (inflammation) going on.  And you joints are involved...obviously.  

I have a few questions.  What was your ANA titer and pattern?

You need to get the IGENEX test for Lymes instead of ELISA.

I'm not so sure you don't have something like lupus or RA going on.  autoimmune
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434278_tn?1324709825
symptoms of tick born illness:

Lyme:
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

Bartonellosis:
Common symptoms of bartonellosis include:
___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)
___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"
___Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature
___Headaches, especially frontal (often confused with sinus) or on top of head
___Eye symptoms including episodes of blurred vision, red eyes, dry eyes
___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)
___Sore throats (recurring)
___Swollen glands, especially neck and under arms
___Anxiety and worry attacks; others perceive as "very anxious"
___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature
___Poor sleep (especially difficulty falling asleep); poor sleep quality
___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)
___Muscle pains especially the calves; may be twitching and cramping also
___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)
___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.
___Tremors and/or muscle twitching
___Heart palpitations and strange chest pains
___Episodes of breathlessness
___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins
___Gastrointestinal symptoms, abdominal pain and acid reflux
___Shin bone pain and tenderness

Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever." Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.

It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is "Bartonella-Like Organism" (BLO) that is yet to be fully identified. While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families.

_________________


Babesiosis

As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:

___Chills
___Fatigue and often excessive sleepiness
___High fever at onset of illness
___Night sweats that are often drenching and profuse
___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)
___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"
___Depression
___Episodes of breathlessness, "air hunger", and/or cough
___Decreased appetite and/or nausea
___Spleen and/or liver enlargement
___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)
___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
___Joint pain (more common with Lyme and Bartonella)
___Anxiety/panic (more common with Bartonella)
___Lymph gland swelling (more common with Bartonella and Lyme)
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Avatar_f_tn


ANA SCREEN W REFLEX AUTOIMM PANEL
Result Date: 3/6/2013


ANA Screen    (Equivocal  -Atypical-)

SSA Ab
118
u/mL
High

SSB Ab
28
u/mL


Sm Ab
13
u/mL


RNP Ab
13
u/mL


Scl-70 Ab
39
u/mL


Jo-1 Ab
51
u/mL


Centromere Ab
17
u/mL


Histone Ab
47
u/mL


dsDNA Ab
47
IU/mL


Interpretation
Interpretation criteria: Negative 120

Thank you!  
   My knee joints and back of my neck frequently become hot to the touch, while my temp. is 98,6.  If I get a immunization, there is no redness, or bruise, but the area remains sore like a bruise.  Strong RA  inherited genetics (as well as osteoA), but hands not having major issues, but trigger finger issue frequent.  
  Regarding gut, CAT scan showed: "No acute intra-abdominal disease.The inferior mesenteric artery and left-sided mesenteric collaterals are prominent with distention of the marginal artery of Drummond. Although assessment is limited by nature of the study, both the celiac and superior mesenteric artery appear markedly narrowed at the origins. The combination of findings is suspicious for mesenteric ischemia."
    [I've seen numerous Late Lymes (treated) with Iliac Disease, and I see that mesenteric ischemia to be a precursor to this disease.]
    B. henselae and B.quintana ALL Neg: IgG,IgM.

Had 'bite' Dec'09; had fever, flu like systems; thought it was a revisit of menopause symptoms. I wasn't in Tick country, but my dog (out with friends), came home covered. I never suspected that I should be vigilant... at the time.

    
  

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434278_tn?1324709825
The only thing that even comes close to being out of range is the SSA.  It was 118 and normal is 120.  It is seen in "most" Sjogren patients and 20-30% of lupus patients.  It is also seen in almost all subacute cutaqneous lupus (it affects the skin mostly).  It can make you more suceptable to the sun's exposure making the skin  flare up more easily.

I don't know if you have lupus or not.  Some of your joint issues could be osteo arthritis.  But to know for sure.  Next time they check your ANA, spend time in the sun prior to having it checked.  Even if its a cloudy day.  It's the UVA's and B's that cause the immune response in lupus.  

I would not just look at lymes, but all the other tick borne illnesses as well.  
Praying for you
~Kara

Have you tried some of the over-the-counter supplements for joint problems?  If not, they would be worth a try...and take them every day for a month before you assess whether they are working for you or not.
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Avatar_f_tn
I'll push for another ANA test, and pre-treat with UV as you suggest.
  Glucosamine Sulfate/Chondroiten for joints these past 5 years. Spine (top to bottom) has deteriorated never the less.
   Rhematoid factor (RH) negative. I wish the CAT scan of my gut could have determined if the blood flow was of an inflammatory response or not.  I've just gone 'Gluten Free', more as a diagnostic then anything else, to see if my gut issues improve. Late Stage tick-born sufferers are known to have colitus-like symptoms...and going Gluten-Free seems to help.
      I've got three areas impacted at once: joints (esp. knee); small intestine, and brain. Perhaps it is indeed Alz/RA/Colitis hitting at once in the last year. Dunno.
    I would think hitting me with Antibiotics would be diagnositic if nothing else; and is certainly the first track taken by my Vet when I drag in my dog. I feel my dog gets a much more logical treatment plan than I do!
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434278_tn?1324709825
I thought the same thing about the vet.  That I might get better care at the vet.  

Anyway, I'm not sure if one tick borne illness is treated differently from another.  

What kind of brain symptoms are you having?

Do you have a bowel obstruction?  What kind of symptoms are going on there?

Sorry for all the questions.  But do they think the degenerative things going on...could that be osteoporosis?
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Avatar_f_tn
   Marked short term memory issues: stuff I'm working with 6-times an hour. Very frustrating. Inability to duplicate a simple line-drawing with a pencil. In comversation, I will launch into a exposition that I just already voiced.
   No bowel obstruction; blood supply to small intestine appears narrowed on CT scan. Too skinny for them to come up with 'inflammation' as the cause. Small intestine enlarged.
    OsteoArth is definite. Esp. spine (top to bottom), with humped shoulders, and 'S' shaped hunch when viewed from the side. Possible L1 pinched nerves causing left leg/hip pain.
Oh, and yes: fail on osteoporosis as well; but nothing broken yet. Six years ago, passed Osteoporosis with flying colors.
      
Thank you for considering!
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MAJOR UPDATE:
   Confirmed Lyme's spirochets be-boping around in knee synovial analysis. Will start I.V. antibiotics for 28 days ASAP.
    This is after 5 doctors and two years, and having been diagnosed with: dementia, osteoporosis, and probable sjorgen's.
    
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434278_tn?1324709825
Well, OK.  That confirms what you suspected all along.  Praying that you will start to recover all that was lost.  It's no fun always feeling bad.  
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FIRST 24 hrs. of Oral antibiotics:
  'Charley horse' like symptoms in the legs at night.  leg pain, but walking about was better!
    The lack of rationality in the Insurance/medical community regarding the diagnosis and treatment of Lyme is mind boggling. On one hand, the insurance companies do not want everyone with dimentia (dementia)-oseto-R-arthritis to be treated to I.V. antibiotics.... so they have hung their bean-counters on 1994 CDC guidelines, and made late-stage Lyme suffers IMPOSSIBLE to diagnose without someone spending some cash on a PCR/DNA analysis on CSF. This would be AFTER MRI and numerous x-ray and cat-scans. .. So after they are confronted with $18k of diagnostics, they pay $350.- for antibiotics (doxycycline 100mg/x2), which - if the result is like mine IS diagnostic for a bacterial infection... right?
   I'll probably go in I.V. in two weeks, to last for 40 days - pending more CSF analysis.
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434278_tn?1324709825
I know it's crazy.
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