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The link below is to an interview with someone in Australia who has Lyme Disease. In this country the most common manifestation is the neurological variety versus the rheumatic. Worth reading, especially for those who live in Australia or for others who think they may have neurological symptoms.
http://www.lymedisease.org.au/wp-content/uploads/2015/04/DonaStobieInterviewFINAL.pdf
BTW, in my case (I’m British-born and with a Mother – in the UK- who had Palindromic RA and then, later, combined with RA), I believe it is most likely that I acquired it in utero – the rheumatic manifestation, triggered most probably in my 30’s by an infection. I’ll never be able to prove that because my Mother died last year. But she had so many accompanying and weird health issues over the years that confounded the medical world and that seemed unrelated – unless you know what Lyme can do, that is – that I have little doubt that is what she had. Unfortunately, she spent the last 20 years on mtx and pred, which contributed greatly (especially the long-term pred) to her later, great disability.
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Lynnie,
That story really touched me. It reminded me of the 1980’s when at age 39, I was suddenly bedridden from a wicked and undiagnosed infection that doctors could not diagnose. A huge range of blood tests showed nothing. There was no internet and no way to get help or support. When I heard medical hints to the effect I was ‘imagining’ my symptoms I had never felt so alone or so afraid in my life. I had gone from being an independent person to a pathetic patient to the point where I almost gave up. I couldn’t even take care of my children. I had to figure out the cause all by myself although I couldn’t even get to a library to do any research. I decided there was only one explanation – it must be bacteria of some kind although I had no idea what it could be. I had travelled a lot to different countries so had no idea what I could have picked up, or where. I had also had a lifetime of recurring dental infections.
Through a relative I made contact with a drug company rep who took pity on my desperate situation and supplied me with huge sample containers of antibiotics meant for doctors and I dosed myself liberally. Within a couple of weeks I was able to force my limbs to start moving again. I began walking again with two walking sticks, then with one, at first just around the house and then to the letter box and back. Then driving again – what a day that was when I managed to get into the car and find enough strength to depress the accelerator and the brake. I sat there and sobbed with relief. I found a chiropractor who managed to get my spine straightened up again – I was bent over and so stiff I could not stand up straight.
I had been back to see a gynaecologist who had treated me in the past because I wondered if something hormonal was going on. When he told me I wasn’t “getting enough sex” I told him that if I could have lifted my foot I would kick him in the balls so that was his lucky day. That felt good. I lost the last of my respect for doctors right about then and fortunately have never recovered it to the extent I will allow any of them to override or bully me. I appreciate the smart ones open to learning.
A year and a half after starting the antibiotics I was back at work although still with pain and inflammation and very dependant on painkillers and an anti-inflammatory drug. My drug rep left his medical job so I wasn’t able to access more antibiotics although I knew they were the reason I was back on my feet, being a mother to my children, and even earning money again.
Doctors who deny Lyme exists should ask themselves that university question posed to students to challenge them to open their minds to new learning – “How do we know what it is we don’t know?”
From the New Zealand Medical Journal – the dangers of tick borne disease in New Zealand – a threat to public health.
Hi Lynnie,
We have had it here since mid 1979,
I got the bugger from a tick (just before I had my son) that decided to attach itself to the back of my head after a leisurely walk in the rain forest. I only knew of it’s presence when I had severe migraines for about 2 weeks and went to the hospital –that’s when they discovered the tick in amongst my hair at the back of my head, and even though it was difficult to lie front down on any table or bed (because I was 9 mths pregnant at the time…lol) I leaned with my head on the bed whilst they removed it.
That’s just before I started getting some strange neurological stuff happening (which thankfully passed in a short time) but having been tested in recent years there is no doubt I have a touch of lyme.
To say we don’t have it or that it is recent is just crap.
Be good, Maz, Aust
Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)All off days Probiotics
Hi guys! thanks for sharing this story. I’m new here, so trying to learn the lay of the land but very interested in lyme as my health and treatment process closely mirror its manifestations. My official dx is this thing called protomyxzoa, but I wouldn’t be surprised if I’m dealing with a neuro-cog lyme variant as well. Igenex equivocal, but several positive bands plus INDs and just started seeing an llnd and we are exploring lyme/coinfections. Certainly dealing with some sort of msids thing.
My main symptoms: chronic lymph node pain behind/under ears (core symptom), neuro cog issues like 0 concentration, anxiety, lack of focus, also brutal exercise intolerance, fatigue, cracking popping joints. I’ve had other symptoms but a few of those have been resolved.
Effective meds trigger brutal herxes and I’ve struggled very much with herxing. I’ve whittled down a lot of symptoms but still following a long treatment process that can still be very very hard. This has been a 10 year journey for me, but only in this last year have I really explored new treatments and made solid strides, even if the road is still going to be hard.
I’ll write up a new topic on my own health situation rather than co opting this one here! sorry about that.
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