SEVERE HEAD PAIN HELP ME

I can't take this anymore i can't. PLEASE HELP ME. I am currently bedridden mainly due to chronic encephalitis/head pain that has been continuous for over a year straight with over 30+ other symptoms. I've felt very depressed, anxious, suicidal, angry, scared due to the tremendous head pain.I have complex issues/co-morbidities like chronic neurological Lyme, Bartonella, Babesia, severe reactivity from mast cell activation, and porphyria, MTFHR/MTRR/CBS mutations, chronic mold exposure, EDS//possible vascular compressions in head, MALS, autoimmune encephalitis/pandas, thickened blood, Candida/Mold/Marcons, leaky gut, and food sensitivities (only able to tolerate 1-2 foods). this is the worst pain ive ever experienced in my entire life what is causing this??? I don't have TMJ and not Temporal arteritis. My guess is my head pain could be due to autoimmune encephalitis/pandas (vasculitis from infected b cells?), bartonella or babesia infections (fibrin nests, or B cells could be attacking the brain, causing inflammation, which attack the blood vessels that may result in sickness in the b cells aka. polyclonal b cell activation), hyper-coagulation/blood clotting (blood clots quickly too, toxins aren’t moved out of the CNS fast enough causing a venous circulation issue and constriction of blood vessels), porphyria attack/AIP/HCP (can cause cerebral blood vessel inflammation and attacks that can last months), structural issues like jugular compression, outflow issue, venous restricted blood flow narrowing (Given presence of MALS we need to rule out compression syndromes), or mold/Marcons. My mold allergen results are through the roof. I don’t know how to narrow this down due to my inflammatory responses (CIRS)??? I don't know someone please help me figure this out I really have considered assisted suicide I can't take this my parents are trying to lock me in a psych ward.

this is how I describe my pain:

Temples: hurts to press on, pain in arteries and blood vessel, feels sore, swollen, heat radiating off them, aching, throbbing, constricted/strained; Veins or tendons hurt and are swollen, and there is protrusion around temples and veins stick out, neuralgia/vascular pain, muscle pain, feels like deep tissue pain/damage, sore protruding veins feels like vasoconstriction, aching, knives going through temples, tightness, bruised inside, very similar to hypercoagulation pain description like someone is yanking/pulling on my veins like tight rope pain, tendons feel like they're being ripped out of my head

Post Edited (sarah r) : 8/23/2024 12:46:46 PM (GMT-5)

hello sorry to hear of your suffering

there are so many conditions, causes and pathways that lead to chronic pain - its important not to assume a cause without some form of supporting physical evidence - aside from the subjective feelings that is.

what tests have you had done to date ?

have you done any testing for Tick born infections - if so which and what were the results ( testing is not perfect - but can still help)

have you had autoimmune panels done?

Cunningham panel for PANS/PANDAS?

MRI?

what doctors have you seen so far and what conditions have been ruled out?

unfortunately the symptoms of many of the tick born infections are highly variable from one individual to the next - including many different types of pain - so the exact type of pain its location and how it feels may not be a useful guide to the cause - which is why the other physical evidence becomes important

Sorry to hear of your suffering, I had severe head pressure / pain which was only relieved by seeing osteopaths who specialise in cranio sacral therapy and who were also trained in the Perrin technique.

The pressure / pain was caused by a build up of lymph in my head so they would manually drain it which would relieve the pressure / pain.

Garzie said...
hello sorry to hear of your suffering

there are so many conditions, causes and pathways that lead to chronic pain - its important not to assume a cause without some form of supporting physical evidence - aside from the subjective feelings that is.

what tests have you had done to date ?

- IGeneX Test on 9/12/22: B. burgdorferi is positive; IgM Immunoblot: Band 23 is positive with
IND 31/34/93/41 are consistent with active Lyme. IgG Immunoblot is negative. TBRF IgM
immunoblot IND consistent with species= B. Miyomoyio. Babesia (FISH) is negative HME-
Negative, HGA is negative RMSF is negative. Positive for Lyme and Miyamoto disease. Equivocal
Babesia duncani. Elevated mycoplasma IgG
- Cunningham panel on 9/15/23: elevated CaM Kinase II (193; normal ranges 53-130)
- Mayo Clinic Encephalopathy, Autoimmune Panel 9/16/23: elevated GAD65 0.08; reference value
<0.0.2)
- Spinal Tap - OLIGOCLONAL BANDS (IGG), CSF on 7/10/23: Comments - The patient's CSF contains
multiple restriction bands that are also present in the patient's corresponding serum sample.
We are unable to define whether these gamma globulins are of systemic or intracerebral origin.
CSF glucose/protein was normal. CSF essentially no cells. IgG index normal.
- EMG Report on 9/19/23: Nerve conduction studies were remarkable for the following:
1. Slow conduction velocities of motor nerves
2. Conduction block of motor nerves on proximal stimulation throughout
3. Prolonged F responses of the left tibial nerve and absent F responses of the left peroneal
nerve Impression: there is electrophysiologic evidence of a motor demyelinating neuropathy.
Patient was seen in consultation and advised appropriately.
- Vibrant Wellness Neural Zoomer on 4/12/23: Positive (IgG + IgA): Optical and Autonomic
nervous system disorder Anti-CV2, Brain Inflammation Anti-Dopamine receptor 1, Anti-Glycine
receptor, Infection Epstein Barr Virus EBNA1. Moderate (IgG + IgA): Brain Inflammation Anti-
Contactin-Associated Protein-like 2 Antibodies, Infection Epstein Barr Virus VCA gp125
- TLab Test Result on 10/26/23: Bartonella henselae 23s rRNA: Positive
- Real Time Lab Mycotoxin Report on 11/2/23: Ochratoxin A Urine 5.10000 ppb - Present,
Aflatoxin Group: (B1, B2, G1, G2) Urine 0.66200 ppb - Not Present, Trichothecene Group
(Macrocyclic): Urine 0.25800 ppb - Present 0.07, Gliotoxin Derivative Urine 6.30800 ppb -
Present, Zearalenone Urine 1.07400 ppb- Present
- Trace Elements Hair Analysis: 10/12/23 Nutrient mineral ratios - high calcium/potassium ratio,
and hypothyroidism. high zinc/copper ratio, low sodium/magnesium ratio, high

calcium/magnesium ratio, B6 deficiency. Toxic metal ratios - all ratios are within acceptable
range. Noted that there is slight raised uranium and aluminum
- GI Map on 2/10/23: Keystone bacteria- Enterobacter spp., - 3.08 L, Faecalibacterium prausnitzii -
<dl L, Firmicutes - 2.23 L. Dysbiotic/overgrowth bacteria - Bacillus spp. - 6.87 high, Streptococcus
spp. - 9.16 High. Anti-gliadin igA- 425 H
- GI Endoscopy and Biopsy Findings on 2/9/23: notes- Antral and funded mucosa with mild
chronic gastritis; negative for H. pylori, delayed gastric emptying noted. Gastric emptying study
came back mildly delayed indicating gastroparesis. Likely why you are feeling full easily. You had
16% of your tracer still in the stomach at the end of 4 hours. Generally normal is less than 10%
retention at 4 hours.
- Microbiology Rx Lab Report on 10/13/23: MARCoNS positive; Staph Coag Negative-LARGE
AMOUNT, Biofilm Analysis Organism-MARCONS: WEAK 1+, and Fungal – pending
- LabCorp Bloodwork Dr. E. Frid on 10/13/23:
o ANA 12 Plus Profile (RDL): Anti-nuclear AB by IFA (RDL): Homogeneous pattern positive-
1:80 abnormal- high; Speckled pattern positive- 1:80 abnormal-high; Midbody pattern
positive- 1:160 abnormal- high
o EBV/EBV Antibody Profile: EBV Ab VCA, IgG - 97.2 (High); EBV Nuclear Antigen Ab, IgG-
89.5 (High); HHV-6 IgG IFA- Abnormal; HSV 1 and 2 Ab, IgG: HSV 1 IgG- 2.99 High; HSV 2
IgG - 2.86 (High)
o Immunoglobulin E, Total C- 3 Low
o Iron saturation- 12 low
o Vitamin D, 25-Hydroxy- 17.9 Low
o TSH+T4F+T3Free+T3Reverse- TSH01 0.130 Low, Reverse T3, Serum A- 36.2 High
o Hemoglobin A1c 4.6 Low
- LabCorp Bloodwork Dr. Bock:
o Tryptase F- 15.6 High
- LabCorp Porphyrins, Qn, Random U on 3/8/24: Heptacarboxyl (7-CP) - 4 High, Coproporphyrin
(CP) I - 21 High, Coproporphyrin (CP) III - 145 High
- Heavy Metals Toxicity Test on 12/20/23: Bi****h – high; Uranium - high
- Invitae Diagnostic Testing on 12/18/23- Test performed: Invitae Primary Immunodeficiency
Panel, Auto-inflammatory and Autoimmunity Syndromes Panel, & Connective Tissue Disorders
Panel
RESULT: INCREASED RISK
o One Increased Risk Allele identified in NOD2.
o One Pathogenic variant identified in COL7A1. COL7A1 is associated with autosomal
dominant and recessive epidermolysis bullosa.
Additional Variant(s) of Uncertain Significance identified.
o NOD2 c.2104C>T (p. Arg702Trp) heterozygous Increased Risk Allele
o COL7A1 c.4011G>A (Silent) heterozygous PATHOGENIC
o ADGRE2 c.2024+1G>A (Splice donor) heterozygous Uncertain Significance
o COL5A2 c.1A>G (p. Met1?) heterozygous Uncertain Significance
o IGL Labor GmbH Test on 12/28/23:
o Investigation | Analysis councilarist, curative:
o Gating action of cytochrome-c-CL complex -poor - on pH change -normal
o Cytochrome-c-CL complex -low - Oxidative stress -normal –
o Phosphatidyl choline, PTC low 90,62 U/106 mt t
- DNA1- Adducts:
Total DNA high - 100,96 µg/ml reference 30,0 - 60,0 µg/ml

DNA1- associated Zinc (Zn) 9,41 ng/ml
o Status Leaky-Gut-Syndrom (sLGS):
o Zonulin high 34,96 ng/ml
o Pancreas-elastase high 4,88 mg/ml
o Calprotectin, L1-Protein mod. in serum high 22,89 µIU/ml
o α-1-Antitrypsin mod. in serum high 211,77 mg/dl
o β-Defensin high 2,62 µIU/ml
o Leaky-Gut-Syndrome - Total Index: medium
o IgE-associated intolerances: NMI-Index:2,39 – low
Health care Index and Life Indicator (HCI) Health-Index (Sensory Footprinting Assay):
1. Acidosis degree - 12% critical
2. Immune defense - 48% good
3. Substance conversion - 35% good
4. Detoxification efficiency - 4% critical
5. Oxidative stress - 65% good
6. Mental strain & ANS - 67% good
7. Regulation of inflammatory processes - 49% good
8. Connective tissue - 4% critical
9. Allergies, intolerances - 64% good
10. 10 Structure & degradation cellular level - 10% critical
- LabCorp - Metabolic Panel; SARS-CoV-2; Soluble Fibrin Monomer on 12/22/23:
 SARS-CoV-2 Semi-Quant Spike Ab- SARS-CoV-2 Spike Ab Interp A, 01 Positive
 Soluble Fibrin Monomer - Positive Abnormal
 BUN – High
 BUN/Creatinine Ratio - 32 High
 Estrone, Serum02 20 Low
- LabCorp Blood Test on 2/26/2023 - IgG Allergens(14) Molds
 **M001-IgG Penicillium chrysog - 67.6 High
 **M002-IgG Cladosporium herbar - 130.0 High
 **M003-IgG Aspergillus fumigat- 138.0 High
 **M005-IgG Candida albican- 17.4 High
 **M006-IgG Alternaria alternat- 3.0 High
 **M007-IgG Botrytis cinerea- >200.0 High
 **M008-IgG Setomelanomma rosta- 168.0 High
 **M010-IgG Stemphylium
 Herbaru- 113.0 High
 **M011-IgG Rhizopus nigricans- 2.6 High
 **M012-IgG Aureobasidi pullulan- 2.5 High
 **M014-IgG Epicoccum purpur- 3.1 High
 **M009-IgG Fusarium proliferat- 7.9 High
 **M207-IgG Aspergillus niger- 76.1 High
- SPECT Scan Assessment Report on 8/18/23:
Findings: The most significant findings are in very mild to mild diamond plus patter of limbic
activity with exception of the moderately increased activity in the focal left region of the
thalamus, mildly increased activity noted in the left basal ganglia and focal right region of the
thalamus and very mild increases in the right basal ganglia, right temporal lobe and anterior
cingulate. Middle decreased activity in the inferior orbits of the prefrontal cortices


have you done any testing for Tick born infections - if so which and what were the results ( testing is not perfect - but can still help)

- yes positive for bartonella, Lyme, Babesia IND, TBRF IND, mycoplasma igg high, and erlicheia

have you had autoimmune panels done?

- yes, Mayo Clinic panel showed elevated gad-65, I did a neural zoomed and had multiple brain inflammation markers, I had spinal tap tested normal pressure but had oglioclonal inflammatory bands, and then I had a spect scan showing hypo fusion

Cunningham panel for PANS/PANDAS?
- yes only thing that was elevated was cam kinase and it was high

MRI?
- normal

what doctors have you seen so far and what conditions have been ruled out?

unfortunately the symptoms of many of the tick born infections are highly variable from one individual to the next - including many different types of pain - so the exact type of pain its location and how it feels may not be a useful guide to the cause - which is why the other physical evidence becomes important

OK - Wow - you have done a lot of testing - and quite a lot of it seems to return abnormal results

its likely that all lyme disease and co-infection illnesses are a result of multifactorial processes that disrupt the persons immune response and allow the infections to take hold - which then further compound other co-morbidities with things like:
-auto-immune disease
-inflammation in the CNS
-various neuropathies
-difficulty detoxifying or overloaded detoxification
-leaky gut etc
these downstream processes increase both the number of and severity of symptoms

it can be very difficult to figure out where this started and how to reverse it - and some cases are simpler than others

the tests listed are hard to interpret in this format - but in overview it seems that mold toxins were present in urine ( not sure at what level vs reference ranges ) and high levels of antibodies to many pathogenic mold species were also present in blood tests - indicating exposure via a separate test method

i am somewhat sceptical of the mold toxin urine tests as it seems that just about everyone here who gets tested gets results back that are "high" - but the corroboration of high IgG antibodies to the same molds is more convincing.

and since you cannot at present actively treat infections - addressing the mold issue may be the best 1st step.
avoiding exposure is the recommended first step.

if it were me i think i would also try adopting a pretty strict AIP (auto-immune paleo) - or ketogenic approach to my diet for a month or two so in an effort to tray to calm any autoimmunity (a wholefood only ketogenic diet helped both my partner and i as much as any other treatment before or since)

recovery from complex illnesses is typically a step by step approach - with one step at a time needed to get the patient to a point where they can tolerate further treatments.

this is of course very challenging to navigate solo - so if at all possible - i would seek out a respected specialist to guide treatment.
Dr J in DC has given presentations on using medications to manage complex pain patients while allowing treatment - so has some experience in this area

i hope its of some help