Frequently Asked Questions
You keep changing your mind about what you have, are you a hypochondriac?
Doctors haven’t told me what I have. Up until last year, CFS had been an illness of exclusion - that is, a patient is given the diagnosis of having CFS if they: 1) meet the list of symptoms associated with CFS, and 2) rule out every other possible illness/pathology that could account for the symptoms (hence the term 'exclusion').
After years of suffering the symptoms and visiting doctors without being given a diagnosis, I eventually visited the nation’s premiere infectious disease specialist who determined I have CFS. This was fortunate as eventually (after years of diligent research!) it led me in the right direction to my specific condition of pTBI-cf (in that pTBI-cf shares many symptoms and affected bioregions/functions/systems and pathways with CFS).
CFS is no longer an illness of exclusion as Dr Navereaux at Stanford University has developed a biomarker test (measuring Cytokines) that determines if a patient has CFS (CFS patients have unique levels and types of Cytokines). This is a relief to the community of CFS suffering years, sometimes decades left without help from professionals after being told ‘there is nothing different or wrong with you’, or worse yet – “you’re making it up”. Aside from cytokines CFS patients have many other physiological (and resultant psychological) differences (changes in white and grey matter blood volume etc), and there are many treatments and medicines for these various conditions (please see CFSHelp.info for full report).
My condition, and the arduous/confusing journey to determining the diagnosis progressed as follows:
I first was treated for a bronchial infection and given steroid pills and inhalers (CFS often begins after steroid use, please see CFSHelp.info for more information). Then a large red bump showed up on my shoulder, and unable to determine what it was, the doctor prescribed antibiotics. I had a bad reaction to the antibiotics and concurrently developed telltale signs of lymes (though all the Kaiser tests taken showed normal results).
After three days of taking the antibiotics I saw a different doctor who said the bump was misdiagnosed and gave me a steroid cream for fungus and the ‘rash’ went away, (though not from the cream it turns out), but the physical flattening didn't. After eight months I remained bedridden. Only finding out later that the ‘rash’ was Granular Anuloma. Strangely Granular Anuloma now shows up before I have a cfs episode (it is a condition not well understood, though is generally believed to be, at least in part, a response to infections (the specific infectous agents unknown).
In visiting Kaiser doctors, repeatedly I was refereed to psychiatry with the implication that my experience was all in my mind which is a shocking assessment as neither my psychologists nor psychiatrists have ever found me to be hypochondriac. I also even visited by a rude doctor at Terra Linda Kaiser who said my tests appear normal, so 'nothing is wrong', and there's 'no magic wand' for him to waive as he hurriedly exited. So I kept switching primary care Doctors and visiting specialists thinking the condition must be assessed by a competent practitioner. Later after briefly recovering/recouping acquaintances I hadn’t seen in awhile said that they didn't recognize me as I no longer carried a grey/green sunken deathly pale coloration, bloodshot eyes and miserable demeanor as I now exhibited a fuller/plumper and vibrant demeanor. Certainly this is a physical illness.
I had 80 of 100 symptoms of Lymes (Lymes symptoms list click here). Also, having the red bump appear before the onset of the symptoms had me considering it was lymes. Research explained that standard tests can be inadequate as Lymes often won't show up unless using the expensive Igenix test (Igenix does correctly find Lymes when other tests don’t, yet it has more false positives than standard tests). Lyme's is sometimes called a great imitator and is notorious for avoiding detection in tests, especially as it won't always show up in tests before treatment.
I couldn't afford the Igenix test, but a naturopath I visited administered tests and diagnosed the condition as Lymes (so I was convinced). I figured if it wasn’t Lymes, at least by visiting doctors and explaining my condition and symptoms a doctor would eventually say what it may be if not lymes (the 'squeaky wheel would get oil' procedure). There was a rush and panic to be heard, believed, or to have the conditions addressed as the longer one waits, the longer Lyme's burrows and spreads until it can no longer be dislodged (the earlier treatments more successful). At the time I learned of a crazy expensive doctor who successfully diagnosed and cured lymes and was unable to visit. Continuing to research, I navigated computer frustrations so as to overcome my research and reporting.
A concurrent condition was IBS and I researched on my own and was, upon request, administered xifaxan for IBS that helped a lot for that - though again frustrated at the ineptitude of my doctors in having their patients do all the actual medical work!).
Then I was given antibiotics for lymes to then take the Lymes test again. I took the Lymes test three times as continued researching Lyme’s related subjects (if it wasn’t lymes, what related illness could cause the similar symptoms – and looked into pleomorphs/mycoplasma/virus/bacteria/fungus and mold/heavy metals and radiological or chemical toxins/spirochites/parasites/Biofilm/cell free rNA, blackfield etc.).
Also trying vitamin/mineral/herbal supplements, oils, many diets (Fodmap, paleo, autoimmune paleo, raw, gluten dairy free, lectin avoidance etc.), b-12 shots, acupuncturists, cleanses, MMS, naturopath clinics, (forced) exercise, chinese herbs, cranial sacral, chiropractic consulting, clearing any possible allergens or toxins in food/water/house etc. - repeatedly doctors and all Kaiser tests returned normal results.
Finally went to Holtorf clinic (which was too expensive to continue after 2 visits) where it was said Kaiser tests weren't in normal range but low (they also didn’t address head injury).
Trying every conceivable healing modality (meditation/Taichi/Chigung/Prayer/Chanting/Mudras/Self Hypnosis/Spells/Reading Spiritual Texts, Tantra etc.), attending group and individual psychology and psychiactric sessions, Taking trips, PEMF matts, Hydrotherapy, Saunas and far infrared, yoga, writing poetry and attempting at times to socialize and simple chores, drawing, photography, writing abstract philosophy, painting and tv - nothing changed, my condition wouldn't budge.
At various times I would post of facebook, or email friends etc as I was confused, anxious, at my wits end, desperate, scared, etc. At times I seemed overly enthusiastic/positive/prolific/planning large endeavors (manic displays from dysautonomia, genuine enthusiasm or Cyclothemia), while other posts may have been depressive/frustrated/exasperated (from rationally upset to other Cyclothemic effect).
Continued visiting Doctors for consultations and tests (allergies, etc.) when I again had granuloma and had pics examined by dermatologist, and researched fecal transplants which I asked gastroenterologist for and so was administered tests to verify if I had celiacs (didn't), and so wasn't prescribed the proceedure (I still think it could be helpful, cvertainly worth considering), saw internal medicine, Neurologists, Ear Nose Throat specialist to ask about the pressure experiencing, Enterologists for variopus discomforts, Infectious Disease, Internal medicine etc. Tried MMS and though helpful for awhile unti symptomks returned.
At that point I didn’t know about CFS, nor did I understand that symptoms of head injury would show up years later. I was further unsure whether I had a single culprit, a syndrome or if my myriad of strange symptoms weren't connected but different illnesses.
After researching a new myriad of possible culprits that could perhaps account for the symptoms (hypothyroidism, leaky gut, prescription meds, environmental toxins, allergies, vitamin mineral deficiency, candida, considered heavy metals though untested, etc.), and attending two sleep clinics (finding only mild apnea and given a machine), I booked a visit to the Nation's premiere infectious diseases specialist. Impressed that he both ran USF Hospital and was on the initial team that discovered HIV (as causing AIDS), I felt at last I had my answer. He was partly correct in diagnosing cfs. I then researched cfs extensively.
at the time a lot of the CFS research was around Epstein Bar viral infection effecting/'causing' CFS and it seemed MMS may help in clearing infectous agents (and as it had relieved symptoms the previous usage), I tried an MMS treatment again. Later when visiting the holtorf clinic was told that if it helped there wasn't anyt problem in continuing to use it periodicaslly at my discretion. However, I don't recommend it to anyone as it's effects are not understood or properly researched.
I then researched each and every possible cause of CFS extensively and developed the site CFSHelp.info
I found two Naturopaths to help with cfs. It helped a bit, though in one case the cost of supplements and recommended modalities (Ozone Hyperbaric, FIRS, etc.) became too cost prohibitive. Also at this point I was tired of all the supplements and diets, and changes to cosmetics and clean products etc.
Found a clinic to help cfs (Holtorf). Followed their directions and both seeing no improvement and running out of money for the services I continued to research cfs extensively.
I changed my environment to a peaceful happy one and that helped a lot. I got yet another book Medical Medium and tried all it's diets recommendations and supplements, and that helped quite a bit. I got employment and helped both with endurance, and isolation, and some income, and even trained there outside of work, with the idea of proper rest diet sleep exercise attitude lots water and relaxation productivity would heal, it does and it did. However I've found two days back to back too much. Also it persists especially during episodes.
Came back to original head injury. Research extensively and eventually discovered every single doctor and practitioner I consulted with were incorrect. It was ‘secondary damage’ leading to pTBI-CF and furthermore there were successful treatments
Click below for detailed chronology (draft)
1) But you look ok, and seem to act alright in social situations and at work
2) What's it feel like for other patients?
3) Haven’t you seen doctors to help with this? What do they prescribe?
4) You keep changing your mind about what you have, are you a hypochondriac?
5) What does it feel like for me?
6) What are you doing about it?
7) What's it like for friends and family?
► Detailed Chronology and Modalities (draft) click to expand
Detailed Chronology and Modalities (draft)
Insight as to the cause of my primary condition may be garnered from examination of the chronology of (any and all ailments).
I had jaundice as an infant. I later had an episode of inexplicable high fever as a toddler. I had 11 baby teeth removed at one time.
Iv'e always had Dark circles under eyes, yet I don't know what this indicates.
Since I was young I would have small regurgitations of any food I ate. With ice cream I would completely vomit.
In my tweens I went to a camp where, though excderting much energy every day I was malnurished, then later had food poisoning.
I have flat feet and often sore legs as a result.
I first noticed my OCD in middle school. My OCD onset at 13, combined with being raised by a concentration camp survivor in a codependent household the combination of factors led to PTSD and related nightmares
In my teens I developed a fungal rash on my chest. My girlfriend and I passed yeast infections back and forth via sex. Following a visit to a gym I aquired athletes foot and later had frequent episodes of jock itch.
From my teen years onward, I fought exhaustion and low energy problems, often sleeping in and taking frequent naps. I found it hard to stay awake during TaiChi class. Suffered from low energy for years. Used to sleep and nap a lot. When young Taichi was hard to stay awake in class.
I experienced minor depression my first year of college. I was traumatised by a series of life events that year (passing of a relative, rejection and lack of social acceptance at school, my rabbi embroiled in a sex scandal, the divorce of my parents, my karate teacher going crazy, emotional abuse by roommate).
In college I dislocated my shoulder and was given valium and dilauded injections. For later injuries I was given Vicodin. I dislocated both shoulders eight times total. I had food poisoning in college.
Later I had a severe head injury resulting in debilitating OCD, frontal lobe damage resulting in a loss of sense of taste and smell and the condition of 'pseudo-psychopathy'. I later regained my sense of taste, and slightly regained smell (3% of what I once had). It has been marked that 96% of those who loose the sense of smell nver work again. Though feeling disconnected from the world, I continued to work. I developed drug/sex/love/alcohol addiction most likely as a result of this injury.
Though I exhibit many symptoms of Celiacs, the test showed negative.
I have IBS often and sometimes vomit the meals that I eat, usually diners are hard to keep. low pressure spins and brain zaps esp from straining on toilet strangest experience get lost, like nitrus have vague connect to conscious voice, but identity lost in momment, shake head to come back, straining and draining esp when blood loss hemoroids. Encouraged to get metamusil fiber, though have mostly veggies and nuts. because I often spend hours at a time on the toilet I have internal and external hemoroids...that can't be helping. Finally, by my own research I switched to the FODMAP diet, later to find out it should have been the first thing recommended to me after years of doctors visits for my IBS. Eventually I switched to a glutten free mostly raw vegan diet. I eventually added back in fish and now added meat but cut out sugar and dairy.
My first experience with vertigo was in 1997. I had been eating a lot of sugarless gum. I was stressed and exhausted from 60, 70 sometimes 80 hour workweeks. I was traumatised by my childhood best friend and business partner becoming increasingly verbally abusive, controling, and eventually sexually harassing and violent. Shortly after, I began taking psychiactric medicine for an ever increasing OCD and for work related trauma. I took Luvox which gave me the pins and made me tired and impotent, so they added viagra, provigil and valium. Later I was switched to lexapro, then paxil then celexa. These gave me irrital bowel syndrome. I stopped the provigil, valium and provigil. Then Later I was given aderal and celexa. Then I was taken off aderal and celexa and given xyprexa. I gained 80 pounds while on xyprexa, which I lost 3 years later. My OCD was out of control and was asking to be comited to an institution. Then I was given prozac, then zoloft, then seroquil. Finally I was given clomipramine then 3 years later cymbalta. With cymbalta I would get 'brain zaps' which eventually led to daily episodes of vertigo, especially when using the restroom. Recently I have been given Prazosine. The medicines all leave me with energy difficulties.
I had terrible IBS and once spent eight hours on the toilet. The bathroom activity led to internal and external hemoroids with a lot of bleeding. I still poo 8 times a day, low pressure spins and brain zaps esp from straining on toilet strangest experience get lost, like nitrus have vague connect to conscious voice, but identity lost in momment, shake head to come back. Hernia operation perhaps affected digestion.
I developed severe back aches and had frequent visits to the chiropractor. Eventually I changed my bed, pillows, car seat and office chair and this helped.
Beginning in 1999 I had nightmares every night. A sleep lab determined I have mild sleep apnoea and I snore loudly. The last time I felt well-rested was a decade ago. I know how a lack of sleep can feed into your worry feedback loop.
My OCD increased and I got divorced and my daughter, dog and business were taken by my ex wife to Canada and I was traumatised and suffered minor depression.
I had a hernia and had a portion of my small intestine resewn which perhaps affects digestion and leaky gut syndrome.
I later contracted the H1N1 virus. This appeared to have weakened my immunity, as before contracting it, I rarely caught colds or flus, but after would get them frequently.
I developed a bronchitis that remained and was given steroid inhalers which I used for about a year.
I had three teeth removed, and discovered I have a reaction to Lidocain, leaving me nauseus for days.
Within the past six years I devceloped nummular eczema on my shoulders and back
Lessions appear(ed) coinciding with the onset (and recurrence) of my primary illness. Lessions appeared the day before I showed symptoms of my primary illness. For years it was believed to be ringworm, but finally it's been determined to be Facile.
cognitive probs of TBi induced pseudo psycopathy difficulty going with the flow, analytuical and things not recognized, planning and knowing what to do causes stress as does garnering strength or focus for that. dysthymia. ocd also adds philo difficulties. anxiety from all contributes to cfs fedback loop. find descriptor wrote lady.
went paleo, mostly raw and pescadarian, stopped milk glutn
tried walks, light excercise, hot tubs and saunas. Took many naps.
started CBD spray and protocals and supplements on own.
Feeling that the medical establishment is not on my side and have to fight them just to prove it's not made up, nor do they know how to help. Those who have seen me before and after my episodes, express I am visibly different. Something is obviously amis.
Thinking perhaps it's Lyme's I find there are six known Lymes tests. Only one is considered accurate within the community of Lymes specialist . That is a test by Igenix in Palo Alto which requires a doctor's referral.
Three years previous, sold all my hierlooms to visit an naturoipath, an acupuncturist and the Tiburon Wellness Center. None of them helped. The Tiburon wellness center only heard my case and didn't even attempt anything. However, they gave me a referral for the Igenix test by. I did not take it as I could not afford it. Yes I spent money on marijuana, however it was the only thing that gave me energy or focus, so was self medicating.
Kaiser will only administer the Bardensis test, which I have had 3 times (twice 3 years ago, and once recently). It showed negative for Lymes, though it is known to be wildly inaccurate (up to 83% reporting of false negatives).
Kaiser refused to administer the Igenix test as covered by their program (when I asked by general practitioners 3 years ago, as well as 2 weeks ago).
Kaiser refused to administer the western blot test (when I requested it to my general practitioner Dr. Bauerr, who after consulting Internal medicine, determined it was not in line with their proceedure). The western blot has been known to be misread by Kaiser (as per Melanie's experience, as well as others in the Lymes community). Though it's innacurate, it is better than the Bardensis test as it can be brought to specialists for better evaluation than the Kaiser staff
5c) I have seen 2 different psychologists (four times) as well as my psychiatrist, Dr Brown (three times). They do not believe I am an hypochondriac. I asked for aderal for energy as a 'band aid' measure, but was told that I'm an addict, and refused.
5d) Those who have seen me before and after my episodes, express I am visibly different.
5f) There are six known Lymes tests. Only one is considered accurate within the community of Lymes specialist . That is a test by Igenix in Palo Alto which requires a doctor's referral.
5g) Three years ago, I sold all my hierlooms to visit an naturopath, an acupuncturist and the Tiburon Wellness Center. None of them helped. The Tiburon wellness center only heard my case and didn't even attempt anything. However, they gave me a referral for the Igenix test. I did not do the test as I could not afford it. Yes I spent money on marijuana, however that was the only thing that gave me energy, focus or relief, so it was money well spent (I was self medicating).
5h) Kaiser will only administer the Bardensis test, which I have had 3 times (twice 3 years ago, and once recently). It showed negative for Lymes, though it is known to be wildly inacurate (up to 83% reporting of false negatives).
5i) Kaiser refused to administer the Igenix test as covered by their program (when I asked by general practitioners 3 years ago, as well as 2 weeks ago).
5j) Kaiser refused to administer the western blot test (when I requested it to my general practitioner Dr. Bauerr, who after consulting Internal medicine, determined it was not in line with their proceedure, and again when I asked Dr. Conception). The western blot has been known to be misread by Kaiser (as per Melanie's experience, as well as others in the Lymes community). Though it's innacurate, it is better than the Bardensis test as it can be brought to specialists for better evaluation than the Kaiser staff
5k) 3 years ago after struggling with this illness I too MMS and was better the next day. I also started the Fodmap diet and stopped peanuts, beans, legumes, wheat bread and pasta . Later I went (mostly raw) paleo, and pescadarian.
5l) When my condition resurfaced 10 months ago I took MMS2, mistaking it for MMS, and it didn't work.
5m) I Then took a high interest loan and began the following supplements (I am still repaying the loans)
i) B-12 as myacobalamine (which is naturally derived, as the common synthetic cyanocobalamine form is ineffective)
ii) Non refrigerated probiotics (turns out it is non bioactive and wasn't helpful
iii) Krill oil for Omega 3 and 5
iv) Multivitamin
v) Green superfood blend
vi) Calcium+
vii) Tumeric
viii) Apple cider vinegar (Braggs kind)
ix) Garlic extract
x) Chia seeds
xi) Flax oil
xii) Baking soda
xiii) Cinnamon extract
xiv) Green tea extract
xv) 'Renew life' brand 'Critical liver support'
I alternated days taking baking soda with the days I took apple cider vinegar
5n) I tried walks, light excercise, hot tubs and saunas and took many naps. Eventually I could no longer walk or do light exercise. I also gave up my gym membership and no longer have access to saunas (though occasionaly do a hot tub).
others may help. outlined in write up.
5o) I wrote a preliminary write up and convinced Dr. Lowerre to prescribe antibiotics. I had a Hexheimer reaction, and after the three week course, it didn't seem to help. Will test again and more likely show I have it.
5p) I quit marijuana 7 months ago and began having night terrors. My Psychiatrist recommended I take a lower dose of Cymbalta at night and prescribed my Prazosine. Eventually that helped me have restful sleeps, instead of the nightmares I experienced every night for the past twenty years, which had increased in severity.
5q) I switched my primary care to REENA JAITUNI CONCEPCION MD, Internal Medicine. She was out of office 5 days. Now, on her return she replied to my request for a referral to an Infectious Disease Specialist by asking I book an appointment with her first.
5r) An acupuncturist on staff at pharmaca, told me to stop everything and gave me instead astralagus, chlorophyl and Gelsemium to take. She also advised me to stop milk and all dairy products. The Naturopath, Merina advised that I could add back in everything but the flax, chia and baking soda (not helpful) and that the alfalfa in the green superfood wasn't helpful. I started with refrigerated probiotics 16 strains also Beleria. I started CBD spray (THCA .54mg, D9THC .43mg, CBDA .056mg, CBD .072mg, CBNA .012mg, CBN .018mg, CBG .044mg). I Changed my diet by eradicating any gluten, using olive oil for cooking, eliminating sugar, included meat, and much less fish.
5s) dr stricker
5t) dr specialist. need transfer docs letter. Changes to Kaiser plan elaborate, and part of CDC there, yet this priority, and can transfer to sutter in October
5u) igenix good idea, need referal from tib wellness center
5v) told to chant and pray and the secret that just say the right things and outlook and heal. have tried that.
5w) As mentioned, I took a 3 week course of antibiotics .
5x) all researched helps with bardnsis test, but not enough. require combo therapy from specialist. Internal medicine reviewed my case and had no suggestions to offer.
5y) Waiting to see gastrointestinal specialist to discuss fecal transplant.
5z) Waiting for steroid cream to work on skin ra
3 years previous tried mms
I have seen 2 different psychologists (4 times) as well as my psychiatrist, Dr Brown (twice). They do not believe I am an hypochondriac. Asked for aderal for energy but told am an addict and refused.
mms 2 (instead mms 1) now mistakenly taken
bought supplements. others may help. outlined in write up.
write up and convince Lowerre for antibiotics. Having Hexheimer reaction. Will test again and more likely show I have it
all researched helps with bardnsis test, but not enough. require combo therapy from specialist
I have just switched my primary care to REENA JAITUNI CONCEPCION MD, Internal Medicine. She was out of office 5 days. Now, on her return she replied to my request for a referral to an Infectious Disease Specialist by asking I book an appointment with her first.
dr stricker
dr specialist. need transfer docs letter. Changes to Kaiser plan elaborate, and part of CDC there, yet this priority, and can transfer to sutter in October
igenix good idea, need referal from tib wellness center
told to chant and pray and the secret that just say the right things and outlook and heal. have tried that.
apt monday, what think place does, Merina paid half, now just shipping on one, and other offer help, requires supplements, hold off on mms as want show for tests
supplements in order, probio 15, one with luav etc
now 3 new supplements, call ask for chiro referal, print form tom, additions email bookmark screenshots
I was feeling a smidge better for four days in a row as I switched off Dairy, stopped a lot of my supplements and switched to only probiotics combined with Astragalus, Chlorophyll and Gelsemium. Today was a setback, and am back to my 84 debilitating symptoms. I saw Internal Medicine on Monday and spoke to Infectuous diseases yesterday. I ordered B6 and B12 tests. I am going in for inflamatory response tests tomorrow. Wondering if I'm in autoimmunity response from my skin lessions and excsema...or vice versa, don't know. Infectuous diseases does not believe I have Lymes. Surprisingly they encouraged my previous MMS use that had helped, however I am holding off on that until I take an Igenix test. Tiburon Wellness Center has issued the referral, I need to pick it up. Going in for a CT scan tomorrow, though Internal Medicine doesn't believe this is related to the issue. Infectuous Diseases has taken on my case and will call me in a week. My antibiotic course is over in one day, and didn't seem to help. In 1 month I will take the Borelis test again.
Until then, I continue researching during the 20 minutes to half hour a day I get of focus...the rest of the time, reading and watching tv is too hard, I have terrible pains and I sleep as much as I am able, though can only do do much. I look forward to meeting with a specialist outside Kaiser in October
I was feeling a smidge better for four days in a row as I switched off Dairy, stopped a lot of my supplements and switched to only probiotics combined with Astragalus, Chlorophyll and Gelsemium. Today was a setback, and am back to my 84 debilitating symptoms. I saw Internal Medicine on Monday and spoke to Infectuous diseases yesterday. I ordered B6 and B12 tests. I am going in for inflamatory response tests tomorrow. Wondering if I'm in autoimmunity response from my skin lessions and excsema...or vice versa, don't know. Infectuous diseases does not believe I have Lymes. Surprisingly they encouraged my previous MMS use that had helped, however I am holding off on that until I take an Igenix test. Tiburon Wellness Center has issued the referral, I need to pick it up. Going in for a CT scan tomorrow, though Internal Medicine doesn't believe this is related to the issue. Infectuous Diseases has taken on my case and will call me in a week. My antibiotic course is over in one day, and didn't seem to help. In 1 month I will take the Borelis test again.
Until then, I continue researching during the 20 minutes to half hour a day I get of focus...the rest of the time, reading and watching tv is too hard, I have terrible pains and I sleep as much as I am able, though can only do do much. I look forward to meeting with the specialist and Daddy, my GP is REENA JAITUNI CONCEPCION MD and my Infectuous Disease GP is Dr. Sharma. Thanks.
No fecal tplant no western blot igenix, say nothing wrong refer to psych and longer wait worse, not offering solutions and usher quick, nonplussed n switching in oct. My case has been marked by malpractice incompetence gross negligence and emotional injury. They could have referred me to in house specialist. They could have administered proper tests (western blot and igenix as requested) etc. This has been mishandled from the get go. They could have done Igenix. Could have done CT and MRI scans to rule out neurological. Much less refused consult for digestive proceedure (separate? Issue). Never asked about my diet or offered suggestions along those ends. Found out first about Fodmap on own then with consult raw Paleo. No suggestions are ever offered, only own research and outside consultants helpful, some more than others. Again and again told nothing they could do as rush me out, worst doctors ever
They didn't check vitamins before (b6 and b12, though I had requested), so now I had that done.
Achy everywhere like a flu. No energy, no focus. Tension headaches. Have about 20 minutes a day of focus, which I use to do dishes, email or write this report. Watching tv and reading is too difficult. I sleep and as body can only handle so much sleep, I then lie in bed listless. I cry all day. Can't walk outside. Joints hurt. Nauseus. Vomit my food. Dizzy, have spins. Feel like every cell in my body is telling me I'm dying. Fight depression. Doing anything's out of reach. My ocd is through the roof. Every day is a chore. Can't even post robots for sale on ebay and have zero dollars. Edgy, irritable. No focus to do art, talk on phone or go out, and stuck all alone all day. Feel the medical establishment is not on my side and have to fight them just to prove it's not made up, nor do they know how to help. Do my best to remain positive. Feel am in jail with no known release date. Know that the longer I have Lymes, the more it burrows and gets worse. Have anxiety. Feel misunderstood. Doing my best to not give up.
vertigo, occitipal lobes pressure neck ache
Getting a CT scan, though she feels its unlikely a neurological issue...they will call for appointment.
Requested my records from 5 years ago to present, will take 2 to 3 days and costs $15 on pickup.
They will not administer western blot, its not in proceedure, nor Igenix. I must get Igenix test anyways. I told my story in full. It turns out I didnt need a signature for records release and waited for no reason.
I asked for Borelis antibody test after my antibiotics treatment is over (as I will now produce the identify able antibodies), she said to wait a month after antibiotics to take the test for most accurate results.
I asked if I can see infectuous diseases department concurrently with her and she said she will call them and they will listen but it is unlikely they will take me on as they are short staffed. She will review my case. So, once get records, make appointment with specialist.
Though I met with my psychiatrist and both changed the schedule of my medicine as well as added a blood pressure cum PTSD medicine (prassosine) for more restful sleep), after two weeks of this new schedule and protocal. I have been in the practice of a long list of healing modalities including: maintaining a (mostly) raw vegan diet (without legumes); taking vitamin/mineral/detox herbs/enzyme/probiotic supplements; meditation; walking; swimming; soaking sun (generating vitamin D); socializing and laughing more; practicing mindfullness and enjoying the moment; Karate/Taichi/Paqua/Chigung; staying 'heart centered' in gratitude; reading spiritual books; chanting; praying; tking a lower dose of cymbalta and adding prazossine; addressing my anger issues and repairing relationships; going to chemical dependency groups/dual diagnosis groups/twelve step groups; engaging in interesting research and writing; Loving my mate; drawing/painting/photography; and hosting a comedy sketch writing group once a month.
7) Healing Modalities and Treatment Protocals I will engage in
in addition to the I have made for said pursuit (which included changes to diet, daily practice of meditation, prayer, excercise, etc.).
8) What I require now
A) Superior Probiotic
B) Merina
B1)EO protocal
C) Igenix
D) Supplements
D1) St. Johns Wort
D2) Apple Cider Vinegar
D3) Hemp Seed
E) Purchase of Salt Diet Book
F) Fecal Transplant, and Doctor willing to perform it (make appointment with gastrointestinal specialist)
G) Julia help
H) That you share this report with anyone who may have insight (Kara and)
I) Appointment with Dr. Stricker
J) Depending on success with Dr 12th, switching to Sutter Health Care
K) Appointment with TCM clinic
3) List of ailments previously experienced and/or currently have - Various conditions similar to Lymes
) Symptoms of Lymes and coinfections
Persistent swollen glands; Sore throat; Fevers; Sore soles, esp. in the AM
Joint pain: Fingers, toes; Ankles, wrists; Knees, elbows; Hips, shoulders
Joint swelling: Fingers, toes; Ankles, wrists; Knees, elbows; Hips, shoulders; Unexplained back pain; Stiffness of the joints or back
Muscle pain or cramps; Obvious muscle weakness
Twitching of the face or other muscles
Confusion, difficulty thinking; Difficulty with concentration, reading, problem absorbing
new information; Word search, name block; Forgetfulness, poor short term memory, poor attention
Disorientation: getting lost, going to wrong places
Speech errors- wrong word, misspeaking
Mood swings, irritability, depression
Anxiety, panic attacks
Psychosis (hallucinations, delusions, paranoia, bipolar)
Tremor
Seizures
Headache
Light sensitivity
Sound sensitivity
Vision: double, blurry, floaters
Ear pain; Hearing: buzzing, ringing, decreased hearing
Increased motion sickness,
vertigo, spinning
Off balance, “tippy” feeling
Lightheadedness, wooziness,
unavoidable need to sit or lie
Tingling, numbness, burning
or stabbing sensations,
shooting pains, skin
hypersensitivity
Facial paralysis-Bell's Palsy
Dental pain
Neck creaks and cracks,
stiffness, neck pain
Fatigue, tired, poor stamina
Insomnia, fractionated sleep,
early awakening
Excessive night time sleep
Napping during the day
Unexplained weight gain
Unexplained weight loss
Unexplained hair loss
Pain in genital area
Unexplained menstrual
irregularity
Unexplained milk production;
breast pain
Irritable bladder or bladder
dysfunction
Erectile dysfunction
Loss of libido
Queasy stomach or nausea
Heartburn, stomach pain
Constipation
Diarrhea
Low abdominal pain, cramps
Heart murmur or valve
prolapse?
Heart palpitations or skips
“Heart block” on EKG
Chest wall pain or ribs sore
Head congestion
Breathlessness, “air hunger”,
unexplained chronic cough
Night sweats; Exaggerated symptoms or
worse hangover from alcohol;Symptom flares every 4 wks.
Additional signs Tick exposure in an endemic region; Historical facts and evolution of symptoms over time consistent with Lyme; Systemic signs & symptoms consistent with Bb infection (other potential diagnoses excluded):
Single system, e.g., monoarthritis
Two or more systems, e.g., monoarthritis and facial palsy
Erythema migrans, physician confirmed
Acrodermatitis Chronica Atrophicans, biopsy confirmed
Seropositivity
Seroconversion on paired sera
Tissue microscopy, silver stain
Tissue microscopy, monoclonal immunofluorescence
Culture positivity
B. burgdorferi antigen recovery
B. burgdorferi DNA/RNA recovery
From author Pamela Weintraub:
Unrelenting pain. Headaches, muscle aches, swollen joints, rashes. Loss of coordination and muscle spasms. Intermittent paralysis. Cycles of disabling symptoms that persist for years, causing ceaseless suffering and frustration for patients and their families.
Early Symptoms of Lyme Disease (3-30 days after the tick bite)
Red, expanding rash called erythema migrans (EM) or a “bulls-eye” rash — can reach 12 inches across, and usually shows up around 7 days after the bite; Fatigue; Chills; Fever; Headache; Muscle and joint aches; Swollen lymph nodes
Early Stage Symptoms of Lyme Disease (Days to weeks after the tick bite)
If Lyme is not treated, other symptoms may appear, and can include:
Additional EM rashes in other areas; Facial or Bell’s palsy (loss of muscle tone on one or both sides of the face); Severe headaches and neck stiffness due to meningitis (inflammation of the spinal cord); Pain and swelling in the large joints (such as knees); Shooting pains that may interfere with sleep; Heart palpitations and dizziness; Fatigue; Forgetfulness/brain fog
Late Stage Symptoms of Lyme Disease (Months to years after the tick bite)
Approximately 60% of patients with untreated Lyme infection may have bouts of arthritis, with severe joint pain and swelling. Large joints are most often affected, especially the knees.
Up to 5% of untreated patients may develop chronic neurological complaints. These include shooting pains, numbness, or tingling in the hands or feet, and problems with short-term memory.
Other late stage symptoms include:
Depression; Panic attacks; Mood swings; Anxiety; Nerve problems; Excessive fatigue; Hormonal deficiencies and imbalances; Other immune dysfunctions; Muscle and joint pain; Neurological problems; Heart involvement; Vision and hearing problems; Migraines
Besides the rash, some of the first symptoms of Lyme disease may include a flu-like condition with fever, chills, headache, stiff neck, achiness and fatigue. For a complete list of symptoms, refer to the Tick-Borne Disease Alliance (TBDA), but some of the more frequent symptoms include the following:
Factors that complicate Lymes recovery
A wide range of health concerns can complicate recovery from Lyme and related disease, says Richard Horowitz, MD, author of Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease. Many patients get well only when multiple factors are addressed:
Co-infections (often coming from the same tick as the Lyme spirochete) most commonly Babesia, Anaplasma, Ehrlichia, and Bartonella Immune dysfunction; Inflammation; Environmental toxins and detoxification problems; Vitamin, mineral, and/or nutritional deficiencies; Mitochondrial dysfunction; Hormonal abnormalities; Neurodegenerative disorders, possibly precipitated by infection; Neuropsychiatric disorders in the aftermath of infection; Sleep disorders; Autoimmune disease and postural orthostatic tachycardia syndrome (POTS), a condition that affects the autonomic nervous system and causes such symptoms as low blood pressure, fatigue, palpitations, and dizziness; Allergies; Gastrointestinal disorders; Liver dysfunction; Pain disorders; Deconditioning and lack of exercise.
1) Possible reasons for my low energy
Only one coming up with solutions or lines of inquiry is me. Doctors say nothing in test and usher me out. Yet each test has 6 more that are superior that can be done. CT scan said nothing found, obviously false. Told lesions was ringworm. I had to ask to see specialist, then it was determined it was skin reaction to virus in addition to symptoms. Not once was nutrition ever brought up. It's up to me to find Specialists outside of system as well as
Possible reasons for my extreme lethargy and chronic fatigue may include:
1) A build up of toxins resulting from intoxicants including:
a) Fifteen years of smoking cigarettesCigarettes. I was going to write up a method and a plan to quit yesterday, but I was sapped of strength and spirit by your behavior and the frustration/adrenal reaction I had to it (yes I am codependent too...I am waiting to hear about my enrollment in codependency class). I was having a good day yesterday but became too flustered to do anything!
b) Twenty years of marijuana use
c) Ten years of hard drug use
d) Twenty years abusing alcohol
2) An ongoing toll on my liver, as well as the toxin buildup following seventeen years of psychiactric drug use. As you are aware, I take cymbalta for my OCD, as without it, I do not function well. Though it seems I have tried every relevant psychiatric medicine available, only cymbalta releives me of my symptoms enough to be stable and productive (have been on or off 10 or so medicines including Luvox, Wellbutrin, Clomipramine, Celexa, Paxil, Zolodt, Aderal, Valium, Prozac, Prassosine, etc.).
3) A build up of household and environmental toxin exposure (including accidental exposure to Hexane in University chemistry class in 1993)
4) Possible deficiency in vitamins, minerals or beneficial fats/oils. This is possible as it is known that certain relatively healthy people are incapable of processing B vitamins correctly and require shots
5) An exposure to Mercury from Mercury amalgam fillings in teeth (now removed)
6) Fallout from the H1N1 infection I suffered eight years ago
7) Having Jaundice as a child
8) An Improper balance of intestinal flora
9) Chemical sensitivities/allergies (as well as possible chemtrail exposure which may contain harmfull Barium and Aluminum particulates)
10) Minor depression from social isolation
11) Sleep apnea as well as unrestfull sleep resulting from PTSD (sleep study tests conclude I have mild sleep apnea)
12) An e xposure to mold incurred while inhabiting a residence thirteen years ago
13) The long term exposure to additives, preservatives, food coloring, dyes and pesticide build up from years of an unhealthy diet
14) An overal drain from the constant anxiety caused by my OCD. Even with medication I have anxiety all day (though I have learned to push through it, I still experience it, and it is tiring and overall taxing)
15) Fluoride and Chlorine in drinking and bathing water. I am looking to purchase filter as it is the right thing for our family (not just for my problems)
16) A drain from my constant anxieties surrounding mental and physical illnesses/self esteem issues/money/relationships
17) A lack of proper brain functioning (and possible hormonal regulation) resulting from brain trauma
18) Food allergies or diet. It is possible I have 'burned out' my adrenal and/or other glands. Also, that I do not properly process dairy leading to an energy drain is worth examining
19) Depression from lack of a social life, fun, inspiration. Depression from relationship problems. Feeling stuck and isolated. Living every day as 12 step work to the exclusion of the rest of what Life has to offer (and be balanced with).
20) Lymes Spectrum Disorder which leads to chronic fatigue). Of the 100 symptoms in the Lymes checklist, I experience 80.
I would like to focus on this last item (Lymes) as the most likely culprit for the 'lions' share' of my experience a chronic absence of energy and focus. There are four reasons leading me to consider Lymes spectrum disorder as the root cause of my symptoms. First are the co-symptoms I experience. Second, upon ingesting MMS (described in part 3) my symptoms temporarily disapear (an almost immediate effect lasting weeks to months), which would counter indicate toxins as the point of origin. Third, in having changed my diet and lifestyle yet having recurrence of symptoms, many of these other possible origin points are 'ruled out' empirically.
Taking Cymbalta would appear offhand as the likely (dominant) cause of my energy problem (as it is known to cause drowsiness just as warnings state directly on the prescription bottle), the lack of energy and focus I experience (as well as other symptoms I shall describe) can not be originating from these nightly doses. Clearly the Cymbalta that I take is invaluable, and it does cause SOME of my drowsiness. However, my energy fluctuates with months of relative normalcy followed by months of intense lethargy. Even within these periods, my energy level fluctuates. As I take the same amount of Cymbalta, followed with the same diet, sleep and excercise regimen these fluctuations indicate the Cymbalta alone is not responsible. Also, last month I decreased the dosage of Cymbalta, without a marked affect in reducing my lethargy and lack of focus.
fix up PH and find you have alot more chi to heal ,, in acid ph we just spin our wheels , and the docs seem to like to overlook the most important info to our health > PH > if acid ph oxygen an prana are not harnessed much * at all
Therefore, Stop coffee and cigarettes. Do that which increases flow.
My immune system is confused, and possibly attacking itself...along with inflamation.
Also a lack of O2 access/flow or processing.
Pesticide garage n house
Endocrine disruptors
Iodine thyroid adrenal etc
Allergy
Probiotic
Intestinal Parasites
Symptoms of Intestinal Parasites - YouTube
https://www.youtube.com/watch?v=R-9BF4mPd2w
Heavy Metals
Vitamin B-3, B-6 and B-12 deficiency
Environmental Toxins
9) Psychology
Neighbors and kid react felt trapped powerless unsettled so long, affected adrenal, Past future tripping missing out unsettled chasing girls misunderstood addictive outlook stressed added up
Dear Lord. Yes when I'm all alone with my illness and no means to get out, or be healed with no end in sight, combined with pre-existing mental illness it's despair
Get free psych therapy at Kaiser psych and Beacon center
I am looking into, and look forward to engaging in other healing modalities for repairing/recovering damage to my brain with: audio therapy/binaural beats; upping my excercise regimen; electro-stimulus; stem cell therapy; ozone therapy, additional supplements and remedies; engaging in Hermetic magic healing craft; biofeedback machines and other forms of meditation such as immersing in sensory deprivation tanks.
Agitated by neighbors not getting restful sleep adgitated by son in law yet he and I changed attitudes with some acceptance also stressed by interpersonal relations which have both moved forward also stressed with all the marijuana smoking and found root causes and maturing stressed with previous jobs and relationships and change them and moved out also always self esteem issues with accomplishments and driven and pushed too hard now more relaxed started martial arts help and not chasing external women friends etc validation lessstress, separated from ellen and heartbreak and also resolved issues with Jessica and parenting stress around money as cared for. Also hydrogen peroxide, dandelion, coloidial silver sublingual or in cut
Stressful attitudes and lifestyle replaced by awareness and peacefulness mindfulness dropping sinking down relaxing also the subconscious addressing and making peace the priority when I knew learned guru those prescribed to us enter, not chase worry rest and all remembered nature of consciousness where headed personal nature new chant help ocd n ocd lessen overall less confusing and settle feeling n Love El appreciate
Ringing in ears meditation frequency focus on
Home, feel belong n happy w El, and rested not pushing projects n accomplished n now that making progress
Prazossene walk a lot less commitments allowed just be less expectations of self n from others
More in tune w nature n true nature n zero point energy, also past present future makes sense not angst n changed patterns
Gratitude and abundance vs scarcity model n 20 things learned from cdc
Solved 2nd koan plus mystic experiences beat fear n love self know my place
Not concerned others think n s t at us as cut drama out n not many arround, not car so work out stretch as walk find rhythm n focus at home, good music etc
Found inspired n inspiring good Spiritual community on fb and many well wishers prayers n pos msgs
Realizes that am n why different ocd n fit in struggle missing out n past lives path n Arcturus
Stopped exposure certain typbacterium
Learned comm better less arguments, show good faith less sex addiction, reality tune n not wanty needy chasing n grateful
All known not try save world have faith n focus
Outthought n sidestepped many ocd thoughts n imagery with wellbeing n superior philosophy n changed response patterns
My experience began when, five years ago, I noticed a red circle on my back. My doctor prescribed antibiotics. I took 2 of the total three days supply and was 'flattened' by it (leaving me feeling as if experiencing the worst alcohol hangover multiplied a millionfold). I did not complete the 3 day treatment. I returned and was prescribedc a topical cream that removed the rash. Since that incident I have experienced minor depression. Not the 'Major depression' type (in that I am not sad or suicidal), but I have no energy and can not work. I have had depression in the past, so am able to recognize what I am experiencing. Though taking Cymbalta for OCD and that works well for that, the medicine does not address what am experiencing. In the past I have been on anti-depressants (having been prescribed over time fifteen different kinds of antidepressants/SRI's/SSRI's). Those I tried in the past either didn't work or had side effects such as low energy or impotence.
10) Conclusion
Until cause is determined and addresses, I will do my best to research and utilize all understanding and modalities for gathering and maintaining energy. How do we produce, process and maintain energy? Our cellular mitochondria must be in optimal condition. Our glands and hormones must be free of obstruction being engaged and balanced. Excercise is key. liver and kidneys, gut flora, fats, protein, vitamins and minerals, sun, healthy psychology, avoiding toxins, strong immunity, fighting free radicals, encouraging cell production (bone marrow, telemeres, rna activity), touch, socializing, joy and happiness, stretching and blood flow, removal blockage and clear digestive tract, in touch with Nature, meditation, lack of anxiety, reducing and removing stressors, sense wellbeing at home, engaged, sexuality, self defense, proper mind and action, alignment and relaxed muscles clear of lactose, sleep clearing chronic illness, spirituality. All this must be in balance and work together.
For a full report on CFS and pTBI-cf, please visit CFSHelp.info
For a full report on CFS and pTBI-cf, please visit CFSHelp.info