ChelsBells

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Apr 23, 2021
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18
Original Post 'Inability to sleep, chest pain, please help' Inability to sleep, chest pain, please help

I am hoping that the smarties on this forum can help me figure out what is going on with my health. I believe it is Neuro Lyme Disease, my doctor does not. What are your thoughts?

I know it's a lot but any help, advice, or knowledge would be greatly appreciated. Some of these test results are very hard to understand, as I have recieved very little clarification from the neurologist & rheumatologist that ordered them.

I am fighting hard to get my life back. Thank you so much<3

Symptoms: Started abruptly on 4/21/21

Tremors when lying down (have to wear neck brace to sleep, cannot use a regular pillow, have to use a 45 degree angle pillow)

Sometimes I will wake up shaking with tremors and nausea.

I cannot lay on my side - back and neck feels like pinching pain - get extremely dizzy - will have a plethora of symptoms after doing this. I've been a side sleeper for as long as I can remember but haven't been able to sleep on my side since this started.

If I look to my sides, down or up, I see stars, get dizzy, lightheaded, like passing out - sometimes with this throat feels numb and then harder to take a breath.

Burning, tingling, numbness in between shoulders that radiates down spine up between ears.

In certain positions, different parts of my face spasm & go numb.

Cannot hold my torso up without it getting extremely fatigued/weak - then I get numb down my spine.

Laying on my back in certain positions will cause my heart to race, blood pressure goes up, dizziness and nauseous. This generally only happens when lying down.

My throat goes numb in certain positions making it hard to breath and swallow.

Voice changes. Sometimes I have no voice in the morning.

Aspirate on saliva & while drinking.

Both arms start to feel extremely weak, heavy, and like I can't raise them. Feeling like I was being paralyzed. Had boyfriend move me to a different position and usually that would work.

Sternum pain.

When I have tremors, i start almost losing feeling in my hands/arms, I get weakness in my arms, starting at my shoulders.

Will wake up and my stomach feels like I'm dropping from the top of a roller coaster, then my blood pressure goes wacky



Test Results:

DNA AB, DOUBLE STRANDED

ComponentYour ValueStandard Range
DNA Ab, Double Stranded10 IU0 - 30 IU
Anti-dsDNA Antibodies Interpretive Guidelines:
0-30 IU Negative
31-60 IU Low Positive
61-200 IU Positive
>200 IU Strong Positive
New EIA reagent kit in use on 2/15/2021. Please note this reagent kit has a different reference range than the previous kit.


ENA AB
Component Results
ComponentYour ValueStandard Range
SSA AbNegativeNegative
SSB Ab4 Units0 - 19 Units
Anti-SSB Ab Interpretation
<20 Units Negative
20-39 Units Borderline
40-80 Units Moderate Positive
>80 Units Strong Positive
Smith AbNegativeNegative
Sm/RNP Ab3 Units0 - 19 Units
Anti-Sm/RNP Ab Interpretation
<20 Units Negative
20-39 Units Weak Positive
40-80 Units Moderate Positive
>80 Units Strong Positive

LYME AB, IGG/IGM, IMMUNOBLOT
ComponentYour ValueStandard Range
Lyme Ab, IgG, ImmunoblotNegativeNegative
Band(s) present: 93 kDa
(Insufficient number of bands for positive result)
INTERPRETIVE INFORMATION: B. burgdorferi IgG Immunoblot

For this assay, a positive result is reported when any 5 or more
of the following 10 bands are present: 18, 23, 28, 30, 39, 41, 45,
58, 66, or 93 kDa. All other banding patterns are reported as
negative.
Lyme Ab, IgM, ImmunoblotNegativeNegative
Band(s) present: 41 kDa
(Insufficient number of bands for positive result)
INTERPRETIVE INFORMATION: B. burgdorferi Antibody IgM
Immunoblot

For this assay, a positive result is reported when any 2 or more
of the following bands are present: 23, 39, or 41 kDa. All other
banding patterns are reported as negative.
Performed By: ARUP Laboratories
500 Chipeta Way
Salt Lake City, UT 84108
Laboratory Director: Tracy I. George, MD

B12
ComponentYour ValueStandard Range
Vitamin B12550 pg/mL213 - 816 pg/mL
Intrinsic Factor blocking antibodies may interfere with this test method. If test results are in conflict with the clinical diagnosis, it is recommended that the patient be tested for Intrinsic Factor blocking antibodies to rule out this possibility.


BORRELIA BURGDORFERI AB, TOTAL WITH REFLEX TO IMMUNOBLOT
ComponentYour ValueStandard Range
Borrelia Burgdorferi AB, TotalPositiveNegative
Presence of detectable Borrelia burgdorferi antibodies. Current testing guidelines recommend that all positive results be supplemented by further testing in a standardized Western blot assay. Potential assay interference due to circulating antibodies against Human Ehrlichiosis (HGE) and Tick Borne Relapsing Fever (TBRF) has been found; interpret results from these patients with caution. There currently is no test of cure for Lyme disease, and this test should not be ordered for that purpose.


CK Total
Component Results
ComponentYour ValueStandard Range
CK83 U/L29 - 168 U/L


Protein Electrophoresis , Reflex to IFIX
Component Results
ComponentYour ValueStandard Range
Protein, Total7.7 g/dL6.4 - 8.3 g/dL
Albumin4.67 g/dL3.86 - 6.04 g/dL
Alpha 10.19 g/dL0.06 - 0.22 g/dL
Alpha 20.79 g/dL0.46 - 0.98 g/dL
Beta0.82 g/dL0.50 - 1.23 g/dL
Gamma1.23 g/dL0.40 - 1.28 g/dL
A:G Ratio1.541.62 - 2.72
Protein Electrophoresis InterpretationNo monoclonal seenNo monoclonal seen, See scan or report


Copper
ComponentYour ValueStandard Range
Copper127.1 ug/dL80.0 - 155.0 ug/dL
INTERPRETIVE INFORMATION: Copper, Serum or Plasma

Elevated results may be due to skin or collection-related
contamination, including the use of a noncertified metal-free
collection/transport tube. If contamination concerns exist due to
elevated levels of serum/plasma copper, confirmation with a second
specimen collected in a certified metal-free tube is recommended.

Serum copper may be elevated with infection, inflammation, stress,
and copper supplementation. In females, elevated copper may also
be caused by oral contraceptives and pregnancy (concentrations may
be elevated up to 3 times normal during the third trimester).

This test was developed and its performance characteristics
determined by ARUP Laboratories. It has not been cleared or
approved by the US Food and Drug Administration. This test was
performed in a CLIA certified laboratory and is intended for
clinical purposes.
Performed By: ARUP Laboratories
500 Chipeta Way
Salt Lake City, UT
84108
Laboratory Director: Tracy I. George, MD



ANA Screen with Titer if positive
ComponentYour ValueStandard Range
ANA by IFASee Titer/Pattern
ANA Titer and Pattern1:160 Homogenous1:40 Homogenous, 1:80 Homogenous, 1:40 Speckled, 1:80 Speckled
This is a borderline significant ANA titer.


ESR
ComponentYour ValueStandard Range
ESR27 mm/hr0 - 20 mm/hr


C Reactive Protein
ComponentYour ValueStandard Range
C-Reactive Protein0.4 mg/dL0.0 - 1.0 mg/dL


CBC With Differential
Component Results
ComponentYour ValueStandard Range
White Cell Count6.5 K/uL3.8 - 10.5 K/uL
Red Cell Count4.7 M/uL3.8 - 5.2 M/uL
Hemoglobin10.2 g/dL11.6 - 15.6 g/dL
Hematocrit35 %34 - 46 %
MCV74 fL80 - 97 fL
MCHC29 g/dL32 - 36 g/dL
RDW CV15.9 %11.7 - 14.7 %
RDW SD41.9 fL36.0 - 46.0 fL
Platelet Count408 K/uL160 - 370 K/uL
Nucleated RBCs0 /100 WBC0 /100 WBC
% Neutrophils56 %%
% Immature Granulocytes1 %%
% Lymphocytes34 %%
% Monocytes7 %%
% Eosinophils1 %%
% Basophils1 %%
Absolute Neutrophils3,680 /uL1,700-7,500 /uL
Absolute Immature Granulocytes30 /uL0 - 50 /uL
Absolute Lymphocytes2,170 /uL1,000-3,500 /uL
Absolute Monocytes450 /uL200 - 900 /uL
Absolute Eosinophils70 /uL0 - 500 /uL
Absolute Basophils50 /uL0 - 200 /uL

Comprehensive Metabolic Panel
Component Results
ComponentYour ValueStandard Range
Sodium140 mmol/L136 - 145 mmol/L
Potassium4.4 mmol/L3.5 - 5.1 mmol/L
Chloride103 mmol/L98 - 107 mmol/L
Carbon Dioxide28 mmol/L22 - 29 mmol/L
Anion Gap9 mmol/L7 - 14 mmol/L
BUN9 mg/dL7 - 19 mg/dL
Creatinine0.65 mg/dL0.55 - 1.02 mg/dL
Glucose84 mg/dL70 - 99 mg/dL
Calcium9.5 mg/dL8.4 - 10.2 mg/dL
Bilirubin, Total0.3 mg/dL0.0 - 1.4 mg/dL
Alkaline Phosphatase67 U/L40 - 150 U/L
AST/SGOT14 U/L5 - 34 U/L
ALT/SGPT8 U/L0 - 55 U/L
Albumin4.0 g/dL3.5 - 5.0 g/dL
Protein, Total8.0 g/dL6.4 - 8.3 g/dL
e-GFR120 mL/min/1.73 sqm60 - 120 mL/min/1.73 sqm
e-GFR Interpretive Statement:
Chronic kidney disease, e-GFR <60 mL/min/1.73sqm
Kidney failure, e-GFR < 15 mL/min/1.73sqm

C3
ComponentYour ValueStandard Range
Complement C3127 mg/dL83 - 193 mg/dL




C4
Component
Your ValueStandard Range
Complement C431 mg/dL15 - 57 mg/dL


Urinalysis with Microscopy
Component Results
ComponentYour ValueStandard Range
ColorLight YellowYellow, Light Yellow, Amber, Colorless
ClarityClearClear
Specific Gravity1.0201.005 - 1.035
pH6.55.0 - 8.0
Leukocyte EsteraseNegativeNegative
NitriteNegativeNegative
ProteinNegative mg/dLNegative mg/dL
GlucoseNegative mg/dLNegative mg/dL
KetonesNegative mg/dLNegative mg/dL
Urobilinogen0.2 mg/dL<2.0 mg/dL
BilirubinNegativeNegative
Hemoglobin2+Negative
WBC0-2 /hpf<=5 /hpf
RBC3-5 /hpf<=2 /hpf
BacteriaNegativeNegative
Squamous Epithelial CellNone Seen /hpf<=2 /hpf
Renal Tubular Epithelial CellNone Seen /hpf<1 /hpf


Protein/Creatinine Ratio, Urine
ComponentYour ValueStandard Range
Creatinine, Urine38 mg/dLmg/dL
Protein, Urine<6.8 mg/dLmg/dL
Protein/Creat Ratio, Ur
Unable to calculate.


TSH
TSH1.220 uIU/mL0.465 - 4.680 uIU/mL


T3 Free
T3, FREE3.76 pg/mL2.77 - 5.27 pg/mL


THYROID PEROXIDASE AND THYROGLOBULIN ANTIBODIES - Details
ComponentYour ValueStandard Range
THYROGLOBULIN ANTIBODIES<1 IU/mL< or = 1 IU/mL
TEST PERFORMED AT:
QUEST DIAGNOSTICS WOOD DALE
1355 MITTEL BOULEVARD WOOD DALE, IL 60191-1024
Laboratory Director: ANTHONY V. THOMAS, MD
THYROID PEROXIDASE ANTIBODIES1 IU/mL<9 IU/mL

Thyroxine Free
THYROXINE, FREE1.28 ng/dL0.78 - 2.19 ng/dL

Vitamin D
ComponentYour ValueStandard Range
VITAMIN D 25-OH, TOTAL41.6 ng/mL30.0 - 100.0 ng/mL
Expected values (Recommendation for 25-OH Vitamin D levels):

Level Range (ng/mL)
Deficient <20
Insufficient: 20 - <30
Sufficient: 30 - 100
Potential Toxicity: >100

METANEPHRINES, FREE
Component Results
ComponentYour ValueStandard Range
Metanephrine0.23 nmol/L0.00 - 0.49 nmol/L
Normetanephrine0.38 nmol/L0.00 - 0.89 nmol/L


Catecholamines
ComponentYour ValueStandard Range
Epinephrine by HPLC67 pg/mL10 - 200 pg/mL
Norepinephrine273 pg/mL80 - 520 pg/mL
Dopamine<20 pg/mL0 - 20 pg/mL

Tryptase
ComponentYour ValueStandard Range
Tryptase4.1 ug/L<=10.9 ug/L
Performed By: ARUP Laboratories
500 Chipeta Way
Salt Lake City, UT 84108
Laboratory Director: Tracy I. George, MD

Methylmalonic Acid
ComponentYour ValueStandard Range
Methylmalonic Acid0.18 µmol/L<0.40 µmol/L
Interpretation
Methylmalonic acid is within the normal range.
 
Last edited:

youngsinatra

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Feb 3, 2020
Messages
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Location
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In regards to neurological symptoms, I‘ve seen multiple cases in my family, where getting the vitamin D closer to 80-100 ng/ml was truely miraculous, even when they were sufficient before and had symptoms with 30-40 ng/ml.

How much vitamin D are you currently taking?

Another thing I‘d look into is HDT. (High Dose Thiamin Therapy by Dr. Constantini)
HDT Therapy

Both vitamin D and B1 have very profound effects on the brain and nervous system, but also on chronic stealth infections.
 

S-VV

Member
Joined
Jul 23, 2018
Messages
599
The high heart rate, high blood pressure and nausea when lying is SNS activation, aka supine hypertension. Its common in autonomic failure and POTS. The pain in the shoulders is the classic “coathanger pain” associated with POTS. The dizziness and inability to support an upright torso again point to standing hypotension.

The intermittent bilateral arm weakness, facial tremors and lack of feeling suggest some kind of peripheral nerve sensorymotor impairment, including the cranial nerves. This needs to be investigated with an electromyographic and nerve conduction study.

The aggravation of symptoms when turning the head, if vertigo is ruled out may point to some anatomic problem in the cervical structures. Appropriate imaging needs to be done here (MRI, computed tomography etc...).

Finally, the blood tests point to a slight inflammatory state (high ESR, borderline ANA) that is not uncommon in EDS.

More investigations need to be done. The supine hypertension, intermittent bilateral sensorymotor abnormalities and the cervical aggravation may or may not be related to eachother, and need to be evaluated separately by a competent neurologist and rheumatologist/neurosurgeon.
 

S-VV

Member
Joined
Jul 23, 2018
Messages
599
All in all, its a very frustrating and obtuse case. I recommend management of symptoms. A nonselective beta blocker will be helpful both for supine hypertension and tremors and for standing hypotension.
 
OP
C

ChelsBells

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Joined
Apr 23, 2021
Messages
18
Are there any updates?
Hi Chad! I know this is a super late response, turns out I have Lyme Disease. I have been feeling so much better though. Definitely not 100% myself, but drastically better than even a year ago. From being nearly bed bound + so many other wild symptoms - to being able to work full time and partake in some of my old hobbies. Feel so lucky to be alive.
 
EMF Mitigation - Flush Niacin - Big 5 Minerals

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