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.

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.