Lung Infection? and Pain Doctor

  Before I get into the latest development in feeling fluey so much this year I want you to have a look at this write up by a doctor with ME/CFS

http://mdwme.blogspot.com.tr/2013/04/dr-paul-cheneys-latest-observations.html

It all sounds very familiar.

I went to Dr Georgious with a lingering cough and he me cough once so along with the "pain" investigations he ordered, he threw in a chest x-ray.  Smart cookie he was.

I already had a low-grade fever and felt like it too with all the temperature dysregulation but I knew Dr Jo would not consider a temperature of 37.2 a fever so I made up my mind to go elsewhere for antibiotics after my appointment with Dr Craig was cancelled and I was slotted in with Dr Jo the next day too late in the afternoon.  I was feeling rotten.  My rib cage was sore and that sends pains off anywhere and I have not been able to wear a bra again because of me being so sensitive the pressure just from a sports bra.  A sports bra means no underwire, no metal and they are safe to wear in a nuclear scan if you want to avoid having to change into a gown.  That would come in handy.

I booked online at Health Engine for Jan's doctor but in the meantime I had scans, blood tests and x-rays to get done.  I had a nuclear bone scan looking for reasons for pain from head to toe.  You can take that either way you read it.  I had the chest x-ray at the same place (QDI) who were agents for Northcoast Nuclear Medicine where I got the bone scan.  The nuclear bone scan required a radioactive tracer so I got that inserted into the same vein you would use for a blood test.  Didn't hurt.  Didn't feel any different after it.  It took a while, quite a few series including separate ones for hands and feet, head and body/spine.  Then I had to go away and come back 2 hours later for the repeat series.

However, before I went in for the nuclear bone scan they let me squeeze in the plain chest x-ray because apparently you can't have a plain chest x-ray after you'be been given a radioactive tracer.  And you are radioactive for 24 hours so it was suggested that I did not let Milo sleep on my bed that night.  She was fine in the play pen.  I probably missed her more than the other way around but I was prepared for a bit of a whinge.  Didn't get it.

The good part was that if I did not pick up the chest x-ray until after the second series of scans, enough time would have gone by for me to take the report as well.  I like getting these things in my hand because Dr Jo says she will give me a copy and then never does.  Dr Craig always does if I remember to ask.  Dr Georgious just hands them over automatically like Dr Andrew did (7/20 doctors join him in Lyme retirement btw).  She failed to send them to the printer again today and I did not let it slide this time.  I asked for them at the desk to be available for me to pick up tomorrow.  For a start I can't remember everything she said and she glosses over things far too easily - like using the words "a touch of emphysema" to be expected because of my smoking and then to be forgotten about like everything else.  She didn't even ask about my diabetes.  She wanted to know if I got all dressed up with flashing jewellery for Christmas after I told her I dyed my hair red for Christmas after she told me she had noticed a change.  All very friendly but I left there today missing a lot of information.  I had wanted to hear about the blood tests from Dr Georgious with the ANA and MS stuff on it even if she could not get the most recent ones done at the new doctor I went to down town.

So I booked to see Dr Gray the day before yesterday but it turned out to be Dr Ravi because Dr Gray was away.  I had seen Dr Gray once before and he was most interested to look over my Lyme stuff which I took back the next day for them to scan there.  I really wanted to get back there before now but I've been so energy less and more concerned about pain relief than treating Borreliosis.  I've spent most of my time at home or just ducking out to the shops and I felt like I needed to protect myself from using too much energy so as to avoid relapse down from this my new "normal for me".  Normal since the whole body vibration machine saga.  Before that normal for me did not involve quite so much pain.  I could blame coming off Effexor for that but I am not sure if it is the longest relapse that I have ever had either but if it was the noradrenaline reuptake side of Effexor that helped with pain more than an SSRI like I'm taking now then I have some hope for the new drug the pain doctor prescribed. Trapentadol.  Dr Jo wrote the script out today.  Not taking them today either because tomorrow morning I have to finish spitting in jars for QML and take Milo to be spayed at Animals At Pelican as the vet is called at the Pelican Waters Shopping Centre.  I don't want to risk one of its side effects, drowsiness, tomorrow morning of all days.  I'm pretty keyed up about it and will be glad to see Milo alive and well tomorrow afternoon.

I have gotten myself pretty wired with all these scans and other tests and I have marvelled at the amount of energy I seem to have despite having a fever and pain so badly that even my eye sockets are making holding my eyes open hard because of pain just moving my eyeball.  But pain and low-grade fever along with chest and shin pain which I have are also symptoms of Bartonella and Dr Ravi said it can get in your lungs when I asked so I suggested he added Bartonella Henslea to the pathology form and he did.  It is the only one they test for via Australian Medicare and the test is notorious for being insensitive.  The bug is known more commonly as Cat Scratch Fever and there are many in the Lyme world who believe it too can be chronic yet not provoking an anti-body response just like so many others that seem to occur in immune-suppressed individuals including AIDS patients.  Another common Bartonella species is Trench Fever and I am sure there are newly discovered ones just as there are with the Borrelia genus.

I've been so slow at writing this I have already forgotten what I have written so I give up finishing this post tonight.

UPDATE:  They found a nodule on my lung via HR CT scan.  They left it there for re-evaluation.  Still having lung symptoms in May 2016.  Hearing services lady said I had fluid behind my ear drum and advised drying it up in March. I have tried antihistamine, pseudoephidrine and NeilMed Sinus Rinses.  In April the optician said the eye pain was due to my sinuses being chronically infected because your eyes are in your sinuses.  He recommended Rhinocort and it seems to have worked not only on the eye pain but also the lung wheezes and throat squeaks in May.  Dr Jo earlier on had suggested I might have asthma but did not tell me to do anything about it apart from a single course of amoxillin after I was complaining about feeling feverish with a temp of only 37.9 max.  Cortisone might be my answer then because the antibiotics did not work.

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.

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.

Rifampicin, Agitated Depression and Pottsville

I didn't want to make it known just how bad I got mentally but hey what the heck, it is my life and that's what happened.  When your ability to make decisions is obliterated by feelings of desperation and physical sensations of anxiety, the only thing left is endless days of pacing the floor and praying for the oblivion that deep sleep can bring.  I was only sleeping for few hours a night though and not at all during the long days of torture.  I had severe gastritis and no enjoyment from food. I didn't mind losing weight.  I was prescribed a couple of anti-depressants which only seemed to make the gastritis worse and some suggest one of them was making my agitation worse.  Later I was put on Effexor which did not aggravate the gastritis.

View from Tropical Fruit World, Duranbah showing Wollumbin Mt Warning

I stopped all my oral lyme treatment because of the gastritis, the pressure from non-lyme doctors and because my mental state could have been aggravated by the anti-biotics.  Clarythromycin has anxiety listed here as one of its side effects. Dr Legend had also reminded me earlier when I was complaining about anxiety that lyme disease and its treatment can involve a worsening of mental symptoms.  In fact when I returned to him he did not restart me on that phase of treatment so that I have been left wondering whether the cysts via the Fasigyn (Simplotan) and the L-form via the Clarithro... were ever gotten rid of.  I did eventually notice a return of my fibromyalgia pain that's for sure.  Bummer.

I continued to take the Bicillin injections fortnightly except for one which I skipped because of a panic attack. But that is all I was being treated with.  I was far too upset to deal with diet or my supplements and I have learned not to spend much time reading about the suffering of others on Facebook Support Groups.  I didn't want to know about Lyme disease....especially if it was causing this mental breakdown.  There is one thing for sure ......I have never ever been that bad with depression and never ever had depression take the form of agitation.  Once upon a time depression meant that I could sleep the day away.  That was not possible because I could not even sit still.  I could not read or use the computer.  All I did was feel this horrible feeling.  My only real friend J did her best to support me even with meals.  But most of the time I was going even crazier feeling confined to the house.

My sister came up to care for me for a couple of weeks or more and I really appreciated it so much.  I followed her around like a sheep when we went out with no real desire to do anything except kill time.  She tried to get me out every day.  She cooked for me and made decisions for me especially what clothes to wear and whether or not to postpone the flooring job that was to be done on this unit.  By the time she had to return home to pack for her big move, the medication was starting to kick in.  Everyday life became so much easier and it was hard to remember how or why tiny things could be so difficult to achieve when they had suddenly become second-nature again.  I caught up with Connor who had broken his arm falling out of a tree and I went from doubting my ability to drive to agreeing to meet my family (Mum and sister) a couple of months later in Pottsville, NSW.....a 2 and a half hour drive plus break time.  I also put on all the weight I lost in just a few weeks.  I was told it was the medication giving me a craving for carbs.  I've still got it then.

Mooball Creek, Pottsville

It was not smooth sailing maintaining my independence because when I cut back on one of my meds called Olanzapine I began to relapse.  I wasn't slow to get mental health advise this time.  Going back up 2.5mg made all the difference after another uncomfortable week.  Actually that happened twice because I tried to cut down again while I was holidaying in Pottsville (with the blessing of my GP).

I had a nice time in Pottsville and surrounding areas.  Mum, sis and I tripped around visiting places most days and often eating out.  We went to Byron Bay, Crystal Castle, the Kingscliff markets, Kingscliff shops, Fingal Head, Tropical Fruit World at Duranbah, Pottsville markets, Bangalow markets, Brunswick Heads and suburbs north called Ocean Shores and South Golden Beach, Tweed Heads, Murwillumbah Rainforest Centre, Murwillumbah Gallery, a marine education centre, Hastings Point, Cabarita Beach Hill and Minyon Falls in Nightcap National Park.  S and Connor caught the train and buses down for the last weekend and I am glad they both got to catch up with Great Nana also known as GrandNan.  The worst thing about the holiday were the stairs in the holiday house.  They damaged my knees somehow and they are still not allowing me to do a full squat but I am getting there.  The best thing about the holiday was realizing that I no longer got fluey exhaustion from being fairly active.  I am now able to walk reasonable distances and continue to do so.

Fish and Chips on the deck

After the holiday was over and I was back home, I had agreed with Dr Legend to begin taking an antibiotic called Rifampicin.  It is not easy to get so it took a few days to organise. This treatment was being used to treat my clinically diagnosed Bartonellosis.  I've mentioned it before as a co-infection of Lyme Disease.  I was surprised by being told at my last visit that I have finished my Lyme treatment and that the Bicillin injections were now considered "maintenance" only.  All I apparently have left to do is complete three months of this Rimycin (Rifampicin).  But so far it has not been easy.

Minyon Falls

Stupa At Crystal Castle

My friend J has noticed a decline in my mental health since I came back from holidays and started the Rifampicin.  There is also a known interaction between Rifadin (as Rifampicin is known in the US) and Olanzapine which I am taking for anxiety.  I told Dr Legend my anxiety had been getting worse again and he told me to put up the dose to make up for the lower levels of this drug in my system as caused by the Rifampicin.

Significant interaction possible (monitoring by your doctor required)

olanzapine Oral + Rifadin Oral

Rifadin Oral will decrease the level or effect of olanzapine Oral by altering drug metabolism

The above is taken from WebMD drug interaction checker.

Rifampicin interacts with many other drugs including the Losec I take, in the same way, and Losec interacts with Olanzapine as well.  Dr Jo, who is managing my psych meds agreed with putting up the Olanzapine so now I have 7.5mg daily.  I had been feeling more depressed as well but she would not put up the Effexor because she said I was already on the maximum dose.  After an initial improvement a week after putting up the one for anxiety, I have continued to remain low in mood and am battling especially in the morning.  I have been making a real effort to get out and indeed I have been going to a ladies friendship group every Wednesday but last week I found myself close to tears while there because I felt unable to socialise with them.  I make these efforts to get out like everyone says but it seems like a big cover-up job.  Yesterday I took J for a drive to the Bushland Botanical Gardens and then Eudlo for lunch.

The fact remains that I am not very happy and I am still getting adrenalin surges like anxiety attacks.  I can't get my brain working in the morning especially because I can't seem to wake up properly.  I am not dysfunctional but I am not comfortable.  And get this.....the side effects of Rifampicin include agitation and tiredness which is nothing to do with any drug interaction.  So two things could be going on with the medication.  And I know I have had more headaches or rather one low-grade permanent one.  It all makes deciding whether any of what I am experiencing is a herx mostly impossible.  I just hope the bad days are a herx and that the bugs are being destroyed in my brain!  The only interesting thing about Rif is the fluoro-orange colour of my urine.

Symptoms of Lyme Disease and Co-infections

One tick bite can cause many infections and each infection has its own set of symptoms.  Lyme disease specifically refers to infection with a bacteria called Borrelia and I understand that there are several Borrelia species throughout the world and that they in turn can take on one of three forms.  A comprehensive antibiotic therapy is directed at each of these forms.  At this point in time, I am being treated with Bicillin which will only stop the spirochete form from multiplying.  The Plaquenil and Minocycline that I was on prior to this were meant to deal with the cyst and L-form (cell-wall deficient form) bacteria but I was taken off them due to my gut problems.

There are so many symptoms that can be attributed to Borreliosis alone but when you include symptoms that may be also caused by co-infections the symptom list becomes overwhelming.  An individual in the early stages of Lyme disease is not going to present with all the symptoms but very slowly over time more and more symptoms are likely to appear as the disease spreads to different organ systems.

I found a web-page that has tried to put these symptoms in some order.  Here is what Mum was looking for.  Read More

The most likely co-infections are Babesia and Bartonella infections but I have not been tested for these.  They are expensive tests only done in the USA. I have a positive history for Mycoplasma Pneumoniae but I have tested negative to Rickettsia (scrub typhus), Q-Fever, Leptospira and Chlamydia.

The following is Dr. Burrascano's 2005 Symptom List Chart

Some relevant quotes:
"Like syphilis in the 19th century, Lyme disease has been called the great imitator and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia, somatization disorder and any difficult-to-diagnose multi-system illness."  Ref: http://www.ilads.org/lyme_disease/about_lyme1.html