Legs come, legs go

My legs stop working unless I take 5mg Prednisolone a day. The problem was that I was only prescribed tablets for the "emergency" treatment of 1 or 2 weeks after which I would stop taking the tablet. On the third cycle of that happening this year, I become so loathe at the idea of losing my legs again that I didn't stop taking them. That was June sometime. It took a little while but by this month I was ready to tackle all the medical appointments that I had let accumulate since before Christmas last year. I WON'T DELIBERATELY PUSH MYSELF INTO RELAPSE any more when I know for sure that it is going to happen. It's not hard to tell when it is going to happen for sure and going out for any reason for even tiny amounts of time has been enough to cause payback all year and I don't see why I should have to line up for it especially if these are my last days....relatively speaking. I'm not inclined to do it for anyone else any more either and I think that is the point when friendships reveal themselves as "fair weather" friendships. People question my love for them possibly because I am not prepared to pay the price of putting up with discomfort which to my body is akin to stress. It could be just the cold wind that my body hates or it could be the energy of "talking" or the light intensity or the fact that I have to wear clothes of a certain calibre. Ban the bra! I say. When I take the prednisolone I feel more alive and more able to distract myself from environmental stress and yeah, my legs work and I can think more clearly and feel more in control because of it. I have not had a nice time of trying to imagine myself any more sick than I already am so now the pressure is off and I can enjoy myself within my limitations. I can potter around the house slowly getting things organised and I can make it to appointments with far less dread. I've had my hearing aid checked and adjusted and I changed providers for the better. I had my eyes checked for everything in a particular effort to find a reason for the "eye headaches" but there was none. I had a home sleep study which I have not got the results of yet and a lung CT which I have got the results of in a watered-down fashion - the nodule has changed!

Now that the news has digested I have more questions but on the day I was just as keen to secure a long-term supply of prednisolone (before discussing the lung lumps)  so that I could take it daily and keep my legs working which I did. She agreed to daily.  She obviously does not want me to lose my walking again either but the only thing she said was that we will try to lower the dose as soon as possible. But now I want to know if taking steroids makes lung nodules grow? All the steroid sprays this year and it grows and none last year and it doesn't? I have not researched this so it is just my thoughts. If I think about it from another angle, I could ask, what is likely to grow faster in the presence of steroids? The answer to that one is fungus. Fungus has been on my mind since the antibiotics seemed to trigger that familiar itch as well as the most worrisome burning mouth I have had all year. It was so intense.

Living my life is kinder to me when I take both the Targin pain killers and now the low-dose steroids as well. I spend too much time feeling ill, and in pain even with these bandaids in my opinion and I do have trouble with side effects, although fewer now that my body is getting a consistent dose. I do wonder how long it will last as being something I am grateful for. Back in my high-dose steroid days (the Crohn's days) the benefit seemed to wear off over time (years). And right now the benefit does not feel as good as it did because I can still get that lead legs feeling that I once used to ignore. However rather than "poop-out", it could be the fact that I have been taking both Amoxycillin and Clarithromycin antibiotics because there is a chance that the lung nodule change is just the result of an infection. But her prescription was only for a week and that seems such a short time to try and rid me of an infection that has been causing lung-snoring noises, sinus problems and a  cough to clear the mucus all year. I'd like it to prove that it is not asthma or COPD as she diagnosed already this year and it is a flare up of say mycoplasma pneumonia (a past infection of mine) by getting better while I am on the antibiotics, but I feel terrible while taking these antibiotics. I've actually finished taking them but I still feel bad.  I was feeling so much better on a regular dose of steroid alone, but I wouldn't even know I am taking an energy-giving steroid right now because I feel yuk and "coma sleep" kind of tired again and if anything, it seems to have stirred up the coughing and lung rattles and mucus squeak sounds even more. I wonder if any of that got picked up on in the sleep study? The extra sore throat I have would not have been noticed by anyone because no-one has actually asked me about my symptoms. I've also been feeling feverish again and I've complained of mini-fevers coming and going all year too.  Needless to say, I hate antibiotic treatments.......even if they work long term to reduce an unproven bug load (which they did in 2012).  But this little one week application won't even do that. My gut is now trying to pay me back with my stomach not letting my food go down.  I am taking a couple of different kinds of probiotics and prebiotics in an attempt to avoid candida and thrush but that has not been something I can count on working.

Anyway, it is starting to sound more like lung cancer as I write about coughing and squeaking and even fevers so I think I will stop writing. It feels like I've been threatened with lung cancer all my smoking life and even when I stopped for 2 years the medical people still treated me like a smoker so it is sort of like "you deserve cancer you idiot". It's nice to know I may get a chance to keep everyone happy in their illusion of life's predictability. The Lyme and CFS and fibromyalgia and crazy autoimmune markers and 100 symptoms (yes I've counted) will be forgotten about if I have cancer. That worries me.  My life and death is now for the purpose of validating all the promising research into multi-systemic chronic disease and to have lung cancer put down on my death certificate will ruin everything!!!!

Episode 45: Research Shows Cannabidiol Is Effective Treatment For Lyme Disease

http://cannabishealthradio.com/2016/12/episode-45-research-shows-cannabidiol-is-effective-treatment-for-lyme-disease/

Ernie Murakami

He recommends the paste, 10 mmol per cc hemp cannabidiol oil which is actually not the marijuana cannabidiol (with THC I assume) but Ernie implies that the cannabis oil with THC would be doubly effective.

---

Blake Graham used to be the other half of Theda Myint and I am mainly friends with Theda's mother in Perth these days. That was so sad. Blake will be working with Dr Ty soon; good luck Blake. This is what Blake wrote yesterday:

Yesterday at 12:47pm · 

Finding my symptoms so hard to cope with lately and life such a struggle. 😕 I have four main symptoms which combined leave me in bed 20 hours/day and extremely limited in what I can do.

Talking for more than 40 minutes causes all the following symptoms. Tinnitus, dizziness, shakiness, weak, clumsy, body over-heating, exhaustion, cognitive problems, more sound sensitive, POTS worse, feel revved up and sleep disturbed. Five days ago I talked for one hour and am still getting all these symptoms and have been feeling very sorry for myself.

Light/noise sensitivity. Prolonged noise or looking at screens causes the same symptoms as above. I can watch TV or look at a computer screen for one hour max. I can't be in a noisy environment with people talking for more than 30 minutes. If I really push things it can be several days to recover.

Severe POTS. Being upright -> chest pain, tachycardia, dizziness, exhaustion, shakiness, cold/blue/painful feet, cognitive problems, etc. Unable to sit up more than one hour at a time. If I sit up one minute longer my nervous system gets fried with tinnitus, body over-heating, insomnia, shakiness, etc. which lasts days.

Severe weakness. Minimal physical activity even while lying down -> chest pain, tachycardia, dizziness and shakiness. If I go over my tiny limit I get two days of chest pain/tachy, tinnitus, body over-heating, insomnia, shakiness, etc. I haven't been able to wash my own hair or shave for over a year. I can but it takes two days each to recover from. I shower with a hand held outlet while lying in an empty bath and even that leaves me collapsed into bed for 50 minutes with chest pain/tachy and then shaky, clumsy, weak for one day. Walking to the kitchen and back is my walking limit and takes 10 minutes to recover from. Brushing my teeth takes 20 minutes to recover from.

These four combined are just awful. Plus after each meal my body copes with the above even worse for the following 50 minutes. I get chest pain, tachy, weakness after meals and if I sit up after a meal POTS symptoms come on way quicker and I get severe nausea. I'm in bed recovering after each meal. Arrgh.😔 

-(

Essential viewing for MS patients - drug reaction warning

Warning from Thomas Greer

Please send this to MS patient you may know. Make sure they see the last slide on Neuro-herxheimer's-like reactions from medications . Patients should work with their doctors and titrate their dosing schedule by starting low dose and also taking a steroid like prednisone or dexmethasone. (Short term)

The medications of which he speaks presumably are worming agents bought over the counter, anti-parasitics etc.  I have heard of people getting more help from their local vet than anywhere else. Please view the video for info about brain herxing from medication.

Published on 28 May 2016

Dr. Alan MacDonald (via live video link from Florida) Chronic Borreliosis and Chronic Seronegative Lyme Disease ­ DNA Probes Solve a Diagnostic Conundrum
Dr Alan MacDonald's recent work finding Nematode worms in Multiple sclerosis MS patients spinal fluid and also finding Borrelia ( Lyme Disease) in the worms. London Lecture May 15 2016

Recent discovery confirmed by state-of-the-art Molecular Beacon DNA probes.

The examination of autopsied brain tissues from patients who died of serious neurological conditions has revealed that many tick-borne infections, such as Lyme disease, go undiagnosed and untreated. Board-certified pathologist, Alan B. MacDonald, MD, says his research shows "tick infections are not easily detected with routine tests, nor are they easily cured with short courses of antibiotics."

MacDonald will present his findings Thursday on Capitol Hill, in the Rayburn House Office Building, at a forum to explore the scientific, economic, and policy challenges posed by the epidemic of Lyme disease and associated tick-borne illnesses.

MacDonald found three Borrelia pathogens, including B. burgdorferi the causative agent of Lyme disease, thriving inside parasitic nematode worms, worm eggs or larvae in the brain tissue of nineteen deceased patients. These microscopic worms are endosymbionts, meaning the Borrelia bacteria dwell inside the worms. A tick bite delivers the nematode into the human body.

"Both the worms and the Borrelia pathogens can cause devastating brain damage," said MacDonald. "Current tests, like the ELISA and Western blot, do not adequately detect the presence of Borrelia bacteria." MacDonald says his discovery also shows "while patients are wrongly declared free of Lyme and other tick-borne infections, in reality, too often they contract serious neurodegenerative diseases which can kill them."

The Rocky Mountain Multiple Sclerosis Center Tissue Bank provided MacDonald with ten specimens from deceased MS patients; all ten specimens showed evidence of Borrelia infected nematodes. Infected worms were also found in five tissue specimens from patients who succumbed to the highly malignant brain tumor Glioblastoma multiforme, the same cancer which took the life of Senator Edward Kennedy (D-MA). Ironically, in 1993, Senator Kennedy chaired a hearing of the Labor and Human Resources committee titled: Lyme disease: A Diagnostic and Treatment Dilemma. Finally, four specimens from patients who died from Lewy Body dementia, the same illness which afflicted comedian Robin Williams, also showed the presence of infected nematodes.

MacDonald's work breaks new ground while building on previous studies. In 1984, Lyme pioneer Willy Burgdorfer, Ph.D. wrote of finding nematodes in tick guts. In 2014, University of New Haven researcher Eva Sapi, Ph.D., examined the guts of ticks gathered in southern Connecticut and found 22% of the nymphs and 30% of adult Ixodes ticks carried nematodes in their systems.

MacDonald identified the infected nematodes using a technique known as FISH: Fluorescent In Situ Hybridization which involves using molecular beacon DNA probes. FISH identifies pieces of Borrelia's genetic material which fluoresce under the microscope with a 100% DNA match. Dr. MacDonald, a fellow of the Academy of American Pathologists, conducts his research through the Dr. Paul Duray Research Fellowship Endowment Inc.

Source: http://www.prnewswire.com/news-releas...

Read also: Could Alzheimer’s Stem From Infections? It Makes Sense, Experts Say http://www.nytimes.com/2016/05/26/hea...

Read also:
Glioblastoma Linked to Lyme Disease http://www.drdarvish.com/glioblastoma...

See more video's and information about Lyme Disease
here on Lyme Channel: http://bit.ly/1VRWk2j

Bifney Frayne1 week ago

Unbelievable! I figured there was an MS foundation of some sort. Yup. $44m spent last year. No search results for MacDonald or nematode. I did see the names of some of my least favorite politicians and lots of way to spend money 'treating' the ailment. Through most of my life I've had the highest regard for scientists but over the last half decade that has nearly vanished but for a handful of people and Dr. MacDonald is certainly one of them. In a better world the guy would get one of the highest prizes in medicine. In our world he'll be lucky to keep his licence to practice.

1

Denise Puckett3 weeks ago

Dr. Alan MacDonald THANK YOU 2016... My Goodness 60 something years after the paper By: Dr. Innes, SCD, PHD., M.R.C.V. S. No one in Florida will help.

1

Brendan Tnias1 week ago

Probably the reason that there was no apparent follow up about the nematode vectors for other human pathogens was an enthusiastic and ongoing biological [and chemical] cryptic bioweapon development program probably largely clearinghoused through the NIH as restructured under the DoD via the Eisenhower appointed Nelson Rockefeller; and the Russian Dollbioweapon consisting of one vector, perhaps a tick, discharging an assortment of varied pathological stealth microbialsdesigned to incapacitate a target population with an array of symptoms such as would stymie the medical establishment'sability to diagnose. Ticks whose bite injects a Russian doll medley of mycoplasmas viruses bacteria and worms/nematodes that carry bacteria that harbor viruses and mycoplasma. What a marvelous thing to unleash upon America in the shadow ofthe NYC metropolitan area. Then lie and deny. Whom can we than for this?

2

Free children's book about Ticks

Kaitlyn had been an elementary music teacher, working with children every day. When she got too sick to work, she stayed at home and wrote her first novel called “Elements.” Now, because of her struggle with Lyme disease, Kaitlyn has written a children’s book called “Once Upon a Lyme” to bring Lyme awareness to children across the world, and has created a blog space that helps other sufferers stay positive and hopeful for curative treatment. 

 Reference article: Huffington Post


Once Upon a Lyme - the book itself online

I am not very well but there are #millionsmissing not just me

My temperature is 37.4, that's all.  Relapsing and remitting mini-fevers for 20+ years.  My basal temperature is about 36.5.  I'm dizzy.  I'm in pain.  Lead legs, hard to concentrate, light sensitivity, sore eyes, breathlessness, zombie mode, placid, sit and stare, don't want to move, nauseous, don't have an appetite, neck pain, surprisingly not so sore neck glands though, sore throat, burning mouth, aching legs, hurts to lift a cup of coffee with my main hand, headache, reflux, delayed gastric emptying, aching fingers, burning soles, tingles and strange sensations right hand side of my back (but that's probably the arachnoid cyst on my spine), strange wheezes cleared with a productive cough when I breath in, squeaks in my throat when I breath out, shoulders relentless, forget what I am doing, slow to make a decision, stopping and doing nothing but exist for a few seconds while waiting for brain to tell me what to do next,  slow to process information, good for nothing but cuddles.

Crimson Crescents

I've got two of those, one on each side.

Crimson Crescents Facilitate CFS Diagnosis
By Robert B. Marchesani

Infectious Disease News, November 1992

MINEOLA, NY—A new physical finding in chronic fatigue syndrome patients may finally give clinicians what they have only dreamed about a clinical way to diagnose the disease.

Burke A. Cunha, MD, discovered what he called crimson crescents in the mouths of 80% of his CFS patients. After the word got out, Cunha received calls from other parts of the country. Physicians began telling him that they also were finding the crimson crescents in their patients once they looked for them.

"When we look inside somebody's mouth, infectious disease doctors and internists instinctively go right to the back and look at the pharynx. When they do that, they miss these crimson crescents because they are on the side. People have missed them for years," said Cunha, MD, chief, infectious disease division, Winthrop-University Hospital, Mineola, N.Y.

For the first time physicians may have a specific indicator to look for on physical examination of chronic fatigue syndrome patients, not unlike the bull's eye of erythema chronicum migrans in Lyme disease patients.

"If your patient has crimson crescents, you now can say it is probably chronic fatigue syndrome," Cunha said.

Cunha' s crimson crescents are located on both sides adjacent to the back molars. (See figure.) They are present as a crescentic membrane of tissue that points toward the uvula. During a tonsillectomy that membrane is removed, which is the anterior pharyngealpillar. This area is crimson-purple and looks like a crescent moon chopped in half because the base goes into the tongue. The top of the crescent bows in toward the middle such that each side mirrors the other, Cunha explained.

When someone has a tonsillectomy, the borders of the crescent become less distinct and the margins are not as sharp. They are located posteriorly where the tonsil would have been before it was taken out. So even patients who had their tonsils removed still present with the crescents but the location and appearance are modified, according to Cunha.

They are always bilateral, and they can be very bright, which is why he called them crimson instead of purple. These crescents last for months and gradually fade as the disease goes into remission. When the patient gets sick again, the crescents usually get redder.

"In chronic fatigue you always find the crescents alone. The rest of the pharynx is uninvolved," he said. There is a small portion of the normal population that may also present with these crescents. "If you get a patient with a sore throat in the office, he or she can have crimson crescents, and the back of the throat is red," Cunha said.

Cunha found crimson crescents in 3% to 5% of non-chronic fatigue patients who presented with non-specific sore throats. Patients who present with mononucleosis or Group A strep do not have the crescents, nor do those with cytomegalovirus pharyngitis or the common viral pharyngitis, according to Cunha.

After seeing many patients in a chronic fatigue study center at Winthrop Hospital, Cunha has his own beliefs about the etiology of CFS. "I believe that the virus that causes chronic fatigue comes from young adults or children who give it to adults. The young child recovers from the illness but the young adult gets a sore throat and some go on to develop the chronic fatigue in adults. I do not know why, but that intrigues me," said Cunha who is also professor of medicine at the State University of New York at Stony Brook Health Sciences Center School of Medicine.

Cunha is trying to grow virus out of these crescents in an attempt to discover their cause. "The problem is when anyone does antiviral throat cultures, clinical labs are not equipped to grow HHV-6. In addition, with viruses you have to go deeper than just the surface because they live within cells. So my next step is to biopsy the crescents," Cunha said. Since there is no test for CFS, the physician must infer the disease from other sources.

"But the most consistent lab evidence that we look for are elevations of coxsackie B-titers and elevations of HHV-6 titers in combination with the decrease in the percentage of natural killer T cells," Cunha explained.

"If the patient has two or three of these abnormalities in our study center, then he or she fits the laboratory criteria for chronic fatigue. Nearly all patients with crimson crescents have two out of three of these laboratory abnormalities," he said.

Cunha's finding is especially promising for physicians who practice too far from a lab to get such evidence. "If you are a physician out in the middle of nowhere and you can't get HHV-6 titers and you can't get the natural killer-cell percentage, then the crimson crescents may be the only way besides history that can suggest the diagnosis," Cunha told Infectious Disease News.

This article was reprinted by The CFIDS Association of America, Inc. publisher of The CFIDS Chronicle 800/44-CFIDS by permission of Infectious Disease News. Volume 5, Number 11, November 1992.

http://www.immunesupport.com/

Late Stage Lyme

yield to our demands, you are no longer in control, obey or die

(aka if you take another step I will make you puke)

The heart of Lyme - Sudden Death

"Although rare, sudden cardiac death caused by Lyme disease might be an under-recognized entity," according to researchers who describe their findings from an autopsy study on 5 case patients who died from sudden cardiac death and were found post mortem to have Lyme carditis. The cases are discussed in an article entitled Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis, published in The American Journal of Pathology.

Read More

Autumn health rave and Birthdays

I did something I've been putting off. I've really gone downhill in the last 12 months. I knew I was pushing it going out for my birthday when I used up my energy just hurriedly walking to my ride out the front. Due to brain fog I had to come back to the house to get something and then back to the car again and by this time I was walking as slow as.....someone with congestive heart failure....was going to say an 80 year old but that is totally wrong....my mother is 87 in a couple of weeks and she would not have any idea what walking with heavy legs, heart palpitating, and breathless at such a slow pace that you are embarrassingly obvious is even like.  Anyway I phoned Centacare for domestic help.

I'm already with Centacare for lawn mowing but I filled in all the paper work today for this stuff. I'm pleased to find out that they do one hour blocks instead of a 2 hour minimum. That's easier (and cheaper) for me to tolerate. Just the floors is fine for starters. I can still tolerate being upright so I am not bed bound and I can walk slowly but not for long before I know I am doing damage.  I need the Deralin again.  Toilet and back is about it but I am used to doing everything tiny bits at a time anyway.

Also am now trying to decide about the mobility scooter. Would you believe that it has been on consignment in a shop for 2 years and it still has not sold so I guess I can just bring it back home for a delivery cost (which is nothing to sneeze at) but I remember not using it much you know. When you really need it just to get out of the house, you have to have enough brain power to operate it and be able to weather the elements and have enough energy just to get ready to go out on it and that makes it harder to use than a car. I can still drive so I am seriously considering taking it to park at a nice view on such a nice day but at the same time I know I would be better off just going back to bed or playing my game.   All the storage problems I had with that scooter, do I want that again? Even the hassle of charging it up all the time? I can't fit it in my car so it is no good for going shopping and using it to go shopping might be an outing up to Pelican Waters but do I really need to add all that extra time to something that can take less than half an hour if I had the energy.  Saving energy is the name of this game.  Going into deficit like I did on my birthday is asking for relapse which could become permanently established as the "new normal"   We had April showers a lot and again.  It is either too hot out there or raining. The scooter decision, it can wait.

My brain is still good enough to entertain me; thanks my lucky stars. Take away my brain and I might start getting depressed again. I can live with the forgetfulness but not the inability to engage in conversation or pursue some online reading/research. If I get back there, please someone come and drag me back to Dr Andrew because I don't know where else to go. But first I will have to cash in some Super (again). Better do it now because if I get any further into bed bound knowing me I will just lie there day in and day out because the thought of pushing myself to even get to a doctor is all too much.

I should see if he will treat this chest thing that is NOT mycoplasma pneumoniae according to the traditional tests. I should, I should. I should...but how? And I reckon I must be nearly due for another hi-res CT scan to check on that lung nodule yet no-one has made any attempt to kill off what I reckon is a stealth infection apart from that one short course of antibiotics that gave me profuse watery diarrhoea.  If I was a doctor, I would have given myself more of a chance of seeing at least a reduction in that lung nodule size through the use of steroids if not more antibiotics but if it is still there I will be going to see Andrew even if it kills me just so I can prove it is not a tumour before they start doing biopsies and shit.

I guess what this post is about is acceptance that I need help.  I still don't want it and I really don't want people coming in here and "assessing the situation" and making notes about.....me.  I did not like it last time.  They watched me disintegrate psychiatrically when the antibiotics crossed the blood-brain barrier last time.  At least I am more aware of what could go wrong now and my treatment will have to be slowed way down at the first sign of anxiety.  But right now, I'm as placid as they come.  I certainly don't sit here worrying about my future but I still have to consider it from time to time which means climbing out of the one-day-at-a-time approach which is relatively comfortable now that I look after myself.  I'm really glad I persevered with obtaining pain meds officially.  I have some measure of comfort for several hours every day but that damn Targin does not last 12 hours like it is supposed to.  Seven maybe?

Something good healthwise happened in April, the migraine things I associate with my back being "out" (which it probably isn't since nothing I can do posture-wise including some convoluted positions, does not seem to help get rid of it even if it shifts the pain/pressure) disappeared all by itself.  The physio appointment made it worse.  So I guess that headache broke the record since it went from before Christmas to early April.  It's not really gone but it is not being provoked simply by moving my arms within my "safe" range of movement.  I am not ready to walk around with my arms above my head though.

All sorts of things happened healthwise in April.  Actually, they haven't stopped happening since April 2015 when I had high blood pressure, hives and high blood sugar.  Quitting egg white, sugar and taking Deralin/Inderal solved those problems but then I had major problems with gastroparesis which I came to recognise required a change of diet which unfortunately does not bode too well for the diabetes so it has been a constant juggling act ever since.  That is pretty typical of my life now.  Juggling the effects of medications and their withdrawals with the state of my gut and head.  Serotonin sensitivity made itself even more obvious the more I took pain killers particularly Tramadol but I was glad to have the Tramadol to act as a quick and dirty relief for the Serotonin withdrawal head zaps on movement so it was a life saver if I forgot to take my anti-depressant and went into withdrawal (within hours).  When I went on the stronger pills I thought it would be a good idea to cut down on the anti-depressant again but they don't make half-strength capsules only a liquid suspension which is fairly unkind to my reflux.  The year had already seen me cut down and make the switch from Effexor to Lovan in an effort to shed some of this weight but it only worked so much in that regard and my pain levels have been much higher on Lovan compared to when I was on Effexor, and the forgetting to take my tablet withdrawals were even worse on Effexor.  Maybe there is an anti-depressant that is somewhere between the two that would suit me better but trial and error is not a fun way to find out.

I've slept a lot of May away so far.  Been in recovery mode which means not doing much more than playing Wartune and attending to the doggie.  And when you are forced to bed, it is nice to have my toes licked by Milo.  I still get the giggles

My 61st birthday was the start of yet another relapse but at least I got out to the RSL for lunch and I met a couple of new people.  Lymies.  I was not feeling very well this time last year in Hervey Bay either but I had several days of holiday before it to wear me out.  This year I have been able to get out way less without suffering a relapse.

For some reason, this year I wanted to be with people but so many did not turn up.  Brenda and Sharon had other things on.  Ange got side-tracked and forgot at the last minute.  Rob piked because of the rain? Shazz did not show.  Karen turned up late and Kerryn from Beerwah just popped in with her hubby to meet me.  She cannot sit so that is why she did not come for the actual lunch.

Cohen had a birthday in April too but Brett made no attempt to include me.  Granted, they only had him for a couple of hours after school but a quick phonecall would have been nice now that skype and facetime calls seem to be too much trouble to organise for Brett.  I sought out Stacey on Facebook so that I could at least find a couple of birthday photos of Cohen.  We have not been on each other's friend list for over a year.  He is 8 years old now.

Catch up on Chronic Illness. Now they call it Multi-Systemic-Infectious-Disease.

In America, the powers that be (the CDC etc) are trying to change the name of Myalgic Encephalomyelitis(ME) to SEID which stands for Systemic Exertion Intolerance Disease. In the UK the PACE trial was found to be poor (or rather rigged) research but they will not officially retract their paper from The Lancet nor has the Lancet itself retracted/rejected it like they should have when it was first submitted for publishing. Anyway the the flaws have been exposed elsewhere but that knowledge is not likely to filter down to the general practitioners and specialists who continue to follow its so-called findings which advocated Graded exercise as a treatment for ME. If the authors and Lancet would admit fault publicly then such practices would stop. They need to stop because that sort of torture is continuing to cause suicides especially in those who are institutionalised. Here in Australia it is still called Chronic Fatigue Syndrome(CFS) and it does not rate much of a mention anywhere unless it is associated with what we now call "A Lyme-like Illness" instead of Lyme Disease. Can you believe that the Senate has called for submissions for an enquiry into Lyme-like disease in Australia. This time next year maybe I'll have some good news. Nothing much has changed for me when I look back and read May 2014's birthday blog. My teeth continue to crumble and crack and be repaired and I still hate wearing a plate mainly because of this darn Burning Mouth Syndrome which no-one knows how to treat. I don't wear it at home so I get caught without it too frequently. I'm in pain all the time you know. Has not ceased since I bought a whole body vibration machine with a credit card although the machine is long gone. I had a really bad time with that triggering fibromyalgia flares and then stiffness and more osteo-type pain which requires Celebrex and a restriction on how long I can sleep for before becoming so stiff that I can not move without impossible pain. It was then that I tried Endone from a friend and loved it because it helped so much that my mood changed to happiness. I asked Dr Jo for some and she said no. I asked Dr Norton for some and he said I can't now that Jo has said no, I'll send you to a pain specialist. That will be in February if I can even afford to go. I feel decidedly worse after walking any distance, even just from the chemist to the bakery and back or after dying or shampooing my hair and if I don't rest up accordingly after, I am likely to be in more pain and have more flu-like feelings, sorer glands, more pelvic pain and ofcourse sleepiness and slowness even with an elevated heart rate the next day. I still get mini-fevers, half a degree or so higher than my usually low (less than 97 degree) temperature. Lately, standing up for more than 5 minutes makes me feel wonky...so usually I sit right back down except when I am caught out the front talking to Flora who is usually talking to Miss Milo. It was bad enough turning 60 in Hervey Bay with Mum and Debbie (and the kids and grandkids)

In the motel at Hervey Bay

My last gourmet birthday mudcake

then finding out that both my blood glucose and blood pressure were too high when we got checked at temporary health screen stand. That led to taking Deralin and a diagnosis of Diabetes type 2 eventually. But I was still getting around back then in between a few recovery days. Everything I have done or rather taken in the form of supplements eg. to treat my MTFHR and COMT polymorphisms, seems to make me feel worse. Anyway I came home from Hervey Bay with itchy bites, so I thought. They became hives and spread eventually up my body. I still have the brown marks quite visible on my pale stomach skin. I blamed the Deralin after considering the mosquito/sandfly reactions of the past but after I insisted on an extended RAST panel that focussed on an area that had been uncovered as a food allergy group, I quit eating eggs and the hives went away almost immediately after months of trying everything to relieve the itch. The strange part is that the high blood pressure vanished even before that so I no longer needed the Deralin which I had blamed for the hives. I have not needed it since so I have not re-challenged with it but I assume it is safe and it sure is much easier to take than metoprolol which for some reason is fatiguing to me. I surely do not need that. No sooner as I had sorted out the hives and while mourning my beloved eggs (my gut likes them) and sugar hits (gut digests sugar easier than most things too), I started having major gut problems. The bowel attacks were back. Partial bowel obstructions and passing-out kinda pain...but I did not pass out so when I did actually go to Emergency one time, they just left me to rot. No pathogens were unearthed from the tests I had then including ones done by the doctor but I was passing blood by the end of one of the attacks. Oh, you have an internal hemorrhoid, no worries. But what was never looked at was my stomach transit times and I swear my stomach would stop working before each of these attacks. I have never felt so much nausea. Nausea so intense than once again I thought I may pass out. It was more a nausea pain because although I wanted to vomit, I never do. Never have...once I did for a few days...that was before all my gut problems started...but not since. Very weird. I am really sure I had gastroparesis in a way that I could recognise it as such this time and I do not want to have it like that again. I couldn't eat, didn't really want to, because my food would not go down. It seemed stupid to stuff more in. I started following the gastroparesis guidelines but ultimately just did what I have always known to do since I was in my 20's....go on a liquid diet. Very difficult when you are supposed to have quit sugar. I had no idea until then that there is no such thing as a sugar-free nutritional liquid. You have to have some sugar I was told. I gave up and had ensure and stuff that was loaded with sugar. Anyway, I got through it and it has happened to a lesser extent since then but I have been able to adjust my diet from my now usual, low carb, high fat, high protein diet. I was not losing any weight though and in my mind, that was the key in making this diabetes 2 go away. It looks like I have started losing weight now though. I have lost 5kg since September. Not only was I eating far less carb but I also had managed to suffer through the prolonged withdrawal associated with switching from Effexor (which I blame for causing the most weight gain) to Lovan (which I used to be on in the past). Everything I have done has been hard work, involved a lot of online research, taken a lot of will power, cost me more money than I was used to spending on food etc. I am glad something is paying off. It has also involved going against the standard advice for diabetes. Yeah I went to a diabetes dietician but her diet did not go anywhere near far enough into cutting carbohydrates (my favorite food). Even low GI carbs were putting up my blood sugar too high. I had a tool to prove it and I used it well. Now I don't bother as much. The safest thing for me to do would be to eat meat and drink water but I'm not that pedantic about it. I'm sorry to say that I have taken up artifical sweeteners in soft drink. I just had to have something that tasted sweet. Never ever wanted that stuff in my body and managed to avoid it for 60 years but my diet ginger beer is an important part of my staying sane. Too much self-denial is bad for the soul. I felt very sorry for myself initially. Diabetes sucks but over it I have some control unlike all the other things I have suffered from since getting glandular fever when I was 16. Actually, I do have more control over the rest in a small way compared to back when I was listening to the masses because I no longer push myself to soldier on (unless it has something to do with my grand kids). It seems to be the worst thing you can do for things like fibromyalgia, ME, CFS, and vector-borne infections that have become chronic. Listen to your body. It cries. Be as nice to it as you would have been to anyone else who you were wanting to help. You are not going to tell that sick friend of yours to flog themselves so don't do it to yourself.

The latest from AHPRA on the treatment of Lyme Disease in Queensland

The latest from AHPRA on the treatment of Lyme Disease in Queensland as it appeared on Bare Bones Medicine Co's Facebook page May 5th 2014:

The Medical Board of Australia has made a ruling in respect to the diagnosis and treatment of Lyme Disease patients in Queensland.
The following information must now be taken into consideration when forming an opinion on your diagnosis of Lyme Disease.
• Lyme Disease includes any illness caused by an organism known as Borrelia burgdorferi (including any strains of that organism, namely Borrelia garinii, Borrelia afzelli and Borrelia burgdorferi (stricto senso))
• Your practitioner must not diagnose and treat Lyme Disease without having obtained a positive diagnosis of Lyme Disease from a laboratory accredited by National Association of Testing Authorities (NATA) using Centre for Disease and Control (CDC) criteria.
• Your practitioner must not treat any patient for Lyme Disease with intravenous antibiotics without having referred you to an Infectious Disease Specialist (IDS) for the development of a written treatment plan. The IDS is to be a Specialist approved by the Medical Board for that purpose. It is only then that your Practitioner may treat you for Lyme Disease.

Any other infection that you may have tested positive to or have been clinically diagnosed with is not considered to be Lyme Disease. Your treatment with your current Practitioner may therefore continue.

Second Crash and birthday photos.

I took things into my own hands when I crashed over Easter.  I started taking the last of the Zinnat I had.  I thought it most likely my "illness" was from a tooth infection/extraction.  I did improve by not doing anything and not going anywhere so that I was OK by my birthday.  Before I had my first crash I had been to an INXS tribute at the RSL with Jan, Jeff, Meshelle, Mandy, Dean and Mandy's brother Dale.  It was there that I marvelled at how great it was to be able to dance and go out at night again.  It was a first since the illness feeling had left last year allowing me to be relatively active without experiencing a crash.  The way things are going it may be the last dance I will have had for a while.

Trying NOT to smile - minus incisors

I went to the RSL again for my birthday but it was't at night time but for lunch with Jan, Lacie and Sue.  I was hoping to see Marina during a break from her poker tournament but she did not show.  Marina and I have not been out anywhere together in the 3 years or so that she has been living opposite the RSL in public housing.  Originally she said she would die there but she is moving to Ballarat in Victoria so it is not like there is much opportunity to catch up with her.  Her gear leaves Caloundra on 24th May.

I wore my Xmas present from Debbie for my birthday

 I am still taking the Zinnat and I will stop in a couple of days which will make it a total of 2 weeks.  I have crashed again since going to the pool on Friday.  I could feel it the moment I stepped out of the water.  I had done too much.  It also seems like these crashes have nothing to do with a tooth infection or else the antibiotics would have prevented this crash.  I won't be self-prescribing any more.

Fluffing up my wet hair NOT blocking my ears

I'm back to the problem I have always had in describing the symptoms that I associate with an infection of some sort.....a chronic infection.  For me that is sore, stiff base of neck; body pulsing feeling like heart is labouring when not even doing anything; a different sort of body-wide aching; internal buzzing feeling; low gut or pelvic pain; sore eyes; weakness; the kind of dizziness that I also associate with SSRI withdrawal; and getting puffed out sooner. I could get a whole lot worse than this but I am finding this too much deal with right now.

All of a sudden I have to consider my activity levels again and begin cancelling appointments (namely the physio tomorrow) and be unreliable again.  I can't count on myself getting there or being there if I listen to my body and if I ignore the warning signs for the sake of something important, I will once again pay a big price.  I don't know whether I can do this all on my own again.  I don't know how I did it before. What will I do, go back to Dr Andrew and beg for Bicillin injections?  How long can one person stay on antibiotics?  Is there going to be a point where they stop working anyway?  I was starting to go backwards on the Zinnat. Should I have "sold" my scooter?

End of Treatment for Lyme Disease and Co-infections

I had been complaining that physically I felt like I was going backward even before I stopped taking my last antibiotic - Zinnat.  I took a month of Ciprofloxican which treats Bartonella and Babesia when I came back from my three-week visit to Rosebud.  I had my final appointment with Dr Andrew on April 4th and stopped taking Zinnat then and there.  It was not helping me get any better but it may have delayed me going backwards faster.  I felt no effect from the Cipro.

Dr Andrew agreed we had exhausted the supply of antibiotics on the PBS.  And he was not able to prescribe for Lyme anyway.  I wanted to stop the antibiotics too.  However I have a feeling that had the Government not put a ban on him treating Lyme kinda stuff, then he would not have agreed to me stopping.  I have been feeling worse already since stopping but there is a complicating factor - an abscessed root canal treated tooth.  It abscessed while I was on the Zinnat and later again on the Cipro.  It tunnelled through my gum to the exterior forming a lump above the tooth several times. It used to go up and down.  If that channel had got blocked I would have been in a lot of pain but what pain I had was totally bearable which is why I kept postponing its removal giving priority to several breaks on other teeth between December and now.  I probably would have given priority to the right incisor (which had broken off at the gum line) at my latest emergency dental appointment had the dentist not made up his mind for me and took the left incisor out.  He said the infection may explain the extra fatigue I have been feeling.  Now I look terrible.  It is a big loss to have to say goodbye to both incisors and it does not help the depression I still have.  I have been depressed and anxious for 12 months.  Life has not been fun even when I had my health.  It makes no sense at all.

Don't ask me to smile

As the tooth extraction site heals I would like to say I am feeling an improvement with my health but 4 days later I can't say I do.  It is Easter Sunday and all I want to do is go and lie down instead of interacting with Scott and Connor.  I've been so bored living alone and now that I have company I am having to worry about the work that it involves like cooking tea and the effect it may have on me in terms of post-exertional malaise (PEM).  I feel sort of dizzy.  I have had that internal vibration feeling after going to the hydro pool to exercise my knee.  I have been paying the price of doing things again for the first time for a year or more.  It is scary to think it all could come back now that I am not taking antibiotics.  I can only hope that the extra stress on my system with this abscess is the explanation for the PEM.

Here are some Easter photos.

My LLMD has had very restrictive conditions placed on his Australian registration

This was posted on the Bare Bones Medicine Co. Facebook page on December 20th:

ANNOUNCEMENT
As of late this afternoon, the following conditions have been placed upon Dr Ladhams by the Medical Board.
He is not to diagnose or treat Lyme disease in Australia as it has not been proven to exist here.
He is not to utilise PICC lines.
A diagnosis of Lyme may only be made by an Infectious Disease Specialist who is a FRACP.
No treatments must be used that will cause a Herxheimer Reaction in any patient.
For full details please refer to AHPRA attached.
Our sincerest and heaviest apologies to our dear patients and potential patients for this terrible news. The Regulators have decided that treating Lyme is dangerous and poses serious risk to patients. We must respect the wishes of the Board.
This is a very sad day for Lyme patients in Australia.

Registration Details

I have my next appointment in March.  I got it into my head that I was finishing treatment after the Rifampicin but that was not to be.  I nevertheless decided that I would do no more Bicillin injections so at my last appointment I was prescribed oral Zinnat (cefuroxime) instead to keep me in a holding pattern until I am ready to start on the Babesia treatment (namely 28 days of Ciprofloxacin and a magnesium supplement).  I will be fitting in a Christmas trip to Hervey Bay and trip to Rosebud before I plan on starting the Babesia treatment. I love not having to have the IM injections.

I finished the Rifampicin a couple of weeks earlier than my last appointment on 29th November and I got considerable relief from the anxiety within 24 hours.  It took another few weeks before I settled down further.

My latest regime also includes Fluconazole twice a week and Nilstat every day.  The Fluconazole can target Lyme cysts and Candida and the Nilstat is for Candida.  I have had far less bloating and gut pains since I have been taking Nilstat which is a long time now and my relief has been total for prolonged episodes.

In March Dr L can still treat me and others for fibromyalgia etc if nothing has changed by then.  I am one of the lucky ones who has my treatment mapped out for a few more months but I feel for all those who are probably panicking about what will happen to them.  Those who were being treated intravenously have my sympathy.

Crazy for Lyme

I've heard of Lyme rage and I see anxiety listed as a side effect of Rifampicin but I don't know how I'm going to make it through another month of it without going crazy.  The suffering is so intense again and Dr Jo put up my meds again....yes, again.  Another 2.5mg.  But I am not alone.  Track and Field athlete Perry Fields blogs about it:

And how about that kid in Tennessee who went into his church and shot his preacher earlier this year?  The mom was reported saying that her son wasn’t behaving like himself and he was being treated for Lyme Disease.

 Read more about psychological reactions to antibiotics here and this is one of the comments you will read there:

Three years ago I took an indefinite course (at least 3 weeks had gone by) of tetracycline for acne and despite the warnings on the bottle to stop taking the medication if I got headaches, I didn't stop taking it on account of my REALLY wanting to get rid of the acne which had been bothering me my whole life. 

Well, I ended up with terrible enxiety and depression; one day I couldn't get off the couch, was extremely panicy, promtly quit my job (!) because I felt what others here have described as an "impending sense of doom".  Words hardly describe how bad it was. 

Three years later I'm still on Ativan and Klonopin for the anxiety. Prescribed 2mg of each every day, but I'm taking 5mg of the benzos right now while weaning myself back to the 4 mg a day.  I'm also taking Lamictal 300 mg a day. 

After three years now, I can't imagine that I'll ever get off the benzos for the anxiety or the depression meds.  Depression has been mostly eliminated with the Lamital, but that seems to have possibly highlighted my anxiety. Hard to tell.  Ssri's havent worked for me for a variety of reasons (allergic reaction to Celexa, inability to properly metabolize Prozac, and so forth).  Wellbutrin almost put me over the edge with the anxiety. 

My family has a history of depression, so I may be an uncommon case, but there is absolutely no doubt in my mind that the tetracycline made the depression and anxiety present when it did -when I was 35 years old.

SSRI's and one of the antibiotics I am taking called Rifampicin also known as Rifampin exacerbated panic disorder as described below. It amazes me that there is only one other case of an interaction between rifampicin and an SSRI (or SNRI) being reported in 2005.  Here I am experiencing it as I type.  I am so close to quitting Rifampicin because I have come far too close to the edge since being on it.  I experienced increased anxiety way back when I started the Bicillin however in those days I had no need for psych meds. Look at me now. I've maxed out on two of them.

Citalopram, a selective serotonin reuptake inhibitor, is used in the management of anxiety disorders. A 55-year-old man receiving citalopram for panic disorder reported a decrease in the agent's therapeutic efficacy when rifampin was started for osteomyelitis. His condition improved when the rifampin was stopped. Rifampin is known to induce the metabolism of cytochrome P450 3A4 substrates and thus plays a role in several drug-drug interactions. We suspect that the efficacy of citalopram was blunted with the concurrent use of rifampin. To our knowledge, only one other case of an interaction of rifampin with a selective serotonin reuptake inhibitor is described in the literature. Clinicians should monitor all drugs and dietary supplements that patients with psychiatric conditions take, regardless of the indication, intended purpose, or prescriber. This is especially important, however, for a drug that is pivotal to a patient's well-being; its therapeutic effect should be carefully monitored when any new drug is added or a change in the dosage of a concurrent drug is made.

Dr. Oladipo Kukoyi M.D., 

Dr. Tami R. Argo Pharm.D., 

Dr. Ryan M. Carnahan Pharm.D., M.S.:

Exacerbation of Panic Disorder with Rifampin Therapy in a Patient Receiving Citalopram: Pharmacotherapy: The Journal of Human Pharmacology and Drug Therapy, 25:3, Mar 2005.

Thank goodness there has been at least one scholarly article written about what I have experienced in regards to going into SSRI withdrawal.  My withdrawal is in the form of brain zaps and perceptual distortion in nano second bursts but repeatedly.  I would like to read the following article but even the abstract is not available without subscribing to an educational database. Sertraline is Zoloft.  I am currently taking Effexor which is an SNRI.

Markowitz JS, DeVane CL., Rifampin-induced selective serotonin reuptake inhibitor withdrawal syndrome in a patient treated with sertraline,  J Clin Psychopharmacol. 2000 Feb;20(1):109-10. 

All drugs aside, Lyme disease (not to mention the common co-infections) presents with psychiatric illness in many cases.  Read about Spirochetes on the brain and the neuropsychiatric assessment of lyme where Robert Bransfield states that:

There are an increasing number of patients with chronic Lyme disease (neuroboreliosis) presenting in psychiatric offices. Lyme disease does not begin as a psychiatric illness. Other symptoms occur in early stage disease. Late in the progression of this disease neurological, cognitive, and psychiatric symptoms predominate. If not well understood, these symptoms are sometimes viewed as non-specific and bizarre. Actually the symptoms can be quite specific with a clear physiological basis, but far too often a routine evaluation is insufficient to adequately evaluate these patients. When the evaluation is not property targeted, key symptoms can be overlooked and these patients may be mistakenly diagnosed with chronic fatigue syndrome, fibromyalgia, M.S., lupus, Epstein barr, as well as many other medical and psychiatric symptoms. (2) They are considered by some to be "hypochondriacal" or "crazy." As a result, many of these patients feel alienated from the mainstream of the health care system. (3,4,5). The recent work of Drs. Fallon and Nields drew attention to the significance of the psychiatric component of chronic Lyme disease. (2,6,7,8,9,10).

 References

Here are some excepts from journal papers talking about borreliosis (Lyme disease) and psychiatric manifestations:

Lyme borreliosis (Lyme disease), a tick-borne spirochetal illness, has later manifestations that may include arthritic, neurologic, ophthalmologic, and cardiac symptoms. Recent reports suggest psychiatric symptoms may also be part of the clinical picture. Method: Using a structured interview (SCID), we interviewed three patients who had developed a psychiatric disorder for the first time after infection with Borrelia burgdorferi. Results: During Lyme borreliosis, one patient had major depression and panic disorder, one patient had an organic mood syndrome with both depression and mania, and the third patient had panic disorder. These disorders remitted after adequate antibiotic treatment

Fallon BA, Nields JA, Parsons B, Liebowitz MR, Klein DF: Psychiatric Manifestations of Lyme Borreliosis: J Clinical Psychiatry, 54:7 July 1993

Up to 40% of patients with Lyme disease develop neurologic involvement of either the peripheral or central nervous system. Dissemination to the CNS can occur within the first few weeks after skin infection. Like syphilis, Lyme disease may have a latency period of months to years before symptoms of late infection emerge. Early signs include meningitis, encephalitis, cranial neuritis, and radiculoneuropathies. Later, encephalomyelitis and encephalopathy may occur. A broad range of psychiatric reactions have been associated with Lyme disease including paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder. Depressive states among patients with late Lyme disease are fairly common, ranging across studies from 26% to 66%. The microbiology of Borrelia burgdorferi sheds light on why Lyme disease can be relapsing and remitting and why it can be refractory to normal immune surveillance and standard antibiotic regimens.

CONCLUSIONS:

Psychiatrists who work in endemic areas need to include Lyme disease in the differential diagnosis of any atypical psychiatric disorder. Further research is needed to identify better laboratory tests and to determine the appropriate manner (intravenous or oral) and length (weeks or months) of treatment among patients with neuropsychiatric involvement.

Fallon BA, Nields JA: Lyme Disease: a Neuropsychiatric Illness: Am J Psychiatry, Nov 1994, 151 (11) : 1571-1583

This drug interactions casebook is a really good reference for interactions between rifampin and both anti-depressants and olanzapine.  For example, one case study explains that "the addition of rifampin to clozapine can produce three to six-fold decreases in clozapine blood levels (Finch et al, 2002)". It also details a case where excessive sedation and even a grand mal seizure occurred after cessation of Rifadin because of the increased dose of clozapine.  This is something to consider when stopping Rifampicin.  Dr Jo asked me to stay on the higher dose of Olanzapine for 5 days before reducing the dose by 2.5mg when that time comes.  I hope I am not sedated or worse.