There IS Lyme Disease in Australia – dx confirmed

[jltntl]

Hi all. This past year has been a roller coaster for me, having gone down with RA and wondering where it came from. Well now I know! Yesterday I got confirmation from DNA test for Lyme Disease.
I went to Sydney to Australian Biologics to do the test in February and they had a positive result and it was sequenced (confirmed) at AGRF lab in Westmead which is NATA accredited so there is no disputing this test!

My story began in Feb/March 1987 when I moved from Melbourne to Newcastle. As I sat waiting for the furniture van in the house that I had rented, hundreds of fleas began hatching. At Easter I had the discoid rash but I thought it was from my visiting friend’s dog. I remember I was home sick for a week and it was then that I noticed I couldn’t focus on the wallpaper. My eyesight had gone from perfect to requiring glasses in a matter of a week. My hair started falling out. I went into depression so bad that I broke up with my boyfriend and returned to Melbourne. I showed my rash to my doctor friend who was studying to specialise in dermatology. She suggested it be biopsied. I had the discoid rash biopsied. I was told it was discoid exzema. The dermatologist told me it only comes on arms and legs and we don’t know why but it has nothing to do with food. The rash recurred for the next 7 years until I had my first baby. (Maybe some drugs I got with the Caesar helped?)

I have had a million symptoms and thyroid disease and now RA. My daughter too has thyroid disease and Lupus. I now will have her and my son tested as I read that Lupus is often misdiagnosed instead of Lyme.

In 2006 I learned of Lyme and could tick all the boxes so I had the antibody test. It was negative. It was suggested again to me after I posted of my RA onset that it may be Lyme (thanks Lyn). Also I noted the tragic tale of Karl McManus and how he had had the antibody test which was negative. All which led me to Australian Biologics for testing.

So YES, there is Lyme in Australia.

[lynnie_sydney]

Julia – thank you for posting this detailed summary of your symptom history (and that of your family) and your news. Just to let everyone know, Julia and I have been in contact for a while and I asked her today to post her news here so that others (everywhere) can see that these results certainly seem to confirm what many Lyme-literate folk believe, that there are indeed other vectors (disease carrying organisms) apart from ticks that can transmit Lyme. Also, I thought the information would interest the aussies who read and post here and who are mystified by their symptoms, then by the information they receive from the authorities and the general medical community that Lyme is NOT HERE. Julia is “fortunate” in the confirmation because, as we know, tests are not always conclusive and clinical diagnosis is often required (which would be extremely difficult to obtain here). Additionally, Australian Biologics does PCR testing (which wont always pick up Lyme) and they are not an accredited lab, so there could be some dispute over their findings. The sequencing of the results at Westmead (one of this country’s foremost teaching hospitals) cannot be disputed.
So, Julia has been fortunate to finally have something to work with. Now she just needs to find someone over here to be able to treat her. Lynnie

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)

[Maz]

Julia, thanks so much for posting this important information. It is a travesty that medical authorities everywhere have been denying just how universal this serious set of “insect-borne” infections has been for decades now. It’s even more of a travesty when patients like you and I actually see the bulls-eye rash, the doc sees it in the clinical setting, and yet the tests return negative and they are so misinformed that they don’t equate the rash with infection! This happened to me. You are very ‘fortunate’ indeed to have this lab test now documented. The next battle, as Lynnie rightly says, it to get appropriate treatment for both the Lyme and potential other infections that accompany it and that it is not just the standard 2 to 4 weeks of doxy. And I hope it will be also be the answer for your daughter.

The Aussies have been pretty innovative in the past, with Barry Marshall unraveling the mysteries of H Pylori infections causing stomach ulcers. Let’s hope – for us all – they will help to be the forerunners in “coming out” and acknowledging Lyme chronicity, too.

Road Back is so very fortunate to have Lynnie “down under” to assist others with info and resources on all this!

Please stay in touch, Julia, and let us know how you get on, both in terms of how the mainstream responds to these lab findings and if you can find adequate treatment for it. There are LLMDs in the US who will consult with open physicians wanting to receive ILADs training, so if you’re struggling to find help, then contacting one of the US Lyme Literate orgs may be an important way to get this help without having to travel here. If you need assistance with this, let us know and we can provide links.

[jltntl]

My search for answers to my and my daughter’s illnesses has been expensive, long and without help from any doctors. I have consulted so many over the years, when I have had unexplained collapses, when I thought my head would blow off, when I had 7 years of discoid rashes (I even had the last one biopsied again a couple of years ago here in NSW and it again came back as “discoid eczema”. I can even remember the name of the dermatologist who did the first biopsy in Melbourne and I contacted them in 2006 to try and get the results but they no longer had the records…or so they said. And last year I ended up at the ER with unexplained atrial fibrillation and bad liver labs and chest pain. The doctor in charge of me at that admission was the infectious diseases specialist and I know he looked at various things like Ross River Fever. I will be at the hospital this week to get all my lab results through FOI. It was I who requested the dna test from my doctor who was sceptical saying his Lyme patients were very sick. But he did not actually see me last year when I had to present at hospital. I wonder now if that episode of low blood pressure, AF, chest pain etc was caused by the Herx reaction after starting on the Mino for my RA. I have read lately that there is a Lyme Hepatitis which may also explain my liver labs which are always bad when I go down.

I need to write down all the steps that I have been through on this search, right down to the call I made to NSW Health in 2006 and was told there was no Lyme in Australia. I will use the patient area here at Roadback to do that so it will be there for all to see and maybe it will help others. At that time I was searching for someone to test me. Lucky I have a persistent personality although I do fear I am going a bit mad. I have had a few psychotic episodes lately which I put down to the stress of the end of my 25 year marriage (my dh had even started calling me crazy woman). My daughter is hopeful that if she has it, it will reverse her Hashimoto’s and SLE which again I had to diagnose and get help from sceptical doctors.

[Rosemary Perth Aust.]

Poor darling. Yes the expense is shocking.
I am so grateful for that information to help others. You have no idea.
We have just had an article in the daily paper over here saying there is no Borrelia Burgdoferi here. Mine was identified as Borrelia Mylophora. Was it Burgdoferi they found, or just Borrelia?
Have a Naturopath that can pick it up, but I am afraid it is not good enough a test for most Physicians
Will give this info to my Rheumatologist.
I know exactly how you feel. It is traumatizing when no one believes you, and you feel so ill.
Was at deaths door myself. Do not know how I got over there and back. Skin and bone unable to eat. Had lived on IV C and minerals for 9 months beforehand.I don’t regret it though for a minute, as I doubt I would have been given the treatment I was even in Melbourne.
I had to actually go to the States for a diagnosis.
Each seem to use different methods. Hope you don’t mind me butting in. Take care of your eyes in the sun. UV itis is not very nice. that was one of the first things I had.
Do hope you feel better soon honey now you can get some treatment.

[jltntl]

Hi Rosemary
I have been thinking about you. You were one of the people I found in 2006 when I was searching for Lyme info. Every now and then I am reminded of you when I come across something on the internet. I remember that you said Salt and Vit C was good. I was telling my daughter the other night when she was sniffing at the salt shaker. I told her what you said and how I felt so much better when I added salt to my diet after my Hashimoto’s dx in 2005. At the time I felt it was helping my adrenal glands and perhaps it was, but now I think it has helped the Lyme too.

Thank you for your message. Yes, it’s been a long haul and I can see why people give up. But thank goodness we are still here to tell our tales. My story is not yet complete. I am pretty sure my kids may have this. My daughter especially is about to fail her HSC because of it. I do not see any study happening and I diagnosed her myself with Hashimoto’s and SLE and now most probably she will have Lyme. My boy has had mysterious symptoms over the years but seems well now, but he too has had baseline tests done yesterday and will have PCR next week. So my mission is not yet over.

I have edited my story. It was very long and I have doubled it. Please use it whereever it may help the cause.

And YES, it is confirmed as Borrelia burgdorferi caught from fleas in Arcadia Vale on the shores of Lake Macquarie. Fleas were left behind, I was told by the Real Estate agent at the time, by 2 cattle dogs which lived in the house before me. 😥

[Rosemary Perth Aust.]

I was so glad you mentioned the fleas. Had not thought of them although I wondered about mosquito’s spreading the disease. We have people here with burgdoferi so it is possible it can be spread just the same.
You poor darling having to worry also about your children as well. I do also and the whole thing is just a nightmare. I do think though that I was the only one with Lyme except for my husband of course, but I cannot be sure.
The salt and Vit C I take three times a day. That was all I could tolerate. I purchased the E book. It is supposed to be in the top two treatments for Lyme according to a book I purchased. I do not think it would be only for Lyme though I think it could be effective for any bacteria and possibly for fungus as well. strange how we are all brought up to believe salt is bad for you. I know it has to be pure sodium but you wonder really what to believe half the time. I worked immediately for me though they did say it gets to the brain last. The problem is with the antibiotics you have to have ones that get through the blood brain barrier whereas the salt and GSE do just that no trouble. Keep in touch my email address is in my profile if you need it just as a friend. Do hope you get help for everyone. I am afraid it is wearing me thin and the stress is certainly not good for you.

[Rosemary Perth Aust.]

Julia if you want the info from the newspaper I have a copy of the article with phone no and email address which I cannot put here.I did contact them and asked the editor when she asked me what I wanted her to do, to contact my rheumy whom she knew for more info as he told me his patients mostly told him they picked it up here. The article does us a disservice to say the least. People do believe what they read . It is not helpful at all especially to the medical profession when there is no knowledge of Lyme in the country. I think we need to do what we can, until they listen like they have done in the States to help all other ill patients who are not ever going to be diagnosed with this disease the way things are.

[jltntl]

Hi Rosemary
Could you email me the article or the link and I will send my story onto whomever wrote it.

I took my kids to be tested for Lyme on Friday. If they have it, they have it, and I will get whatever treatment they need. My son already has rf antibiodies when he was tested in 2008 and i had those tests repeated last wednesday and his ccp antibodies will be tested also this time amongst other things. I just checked the mail and results are not here yet.

[Rosemary Perth Aust.]

Julia had a bit of trouble with the private message so let me know if you did not get it.
I found your hotmail address which I had written on the sheet. Did not realise I had done that before it was erased. Will send it by hotmail if you do not get it.
I am just so glad you have a diagnosis so you can help your children. You just have to be persistent don’t you.
Made it so very difficult for me. Without going to the States I would not be here. We do not want others to go through this.
It is so much easier if treated early.

[Sandyg]

@Rosemary Perth Aust. wrote:

I was so glad you mentioned the fleas. Had not thought of them although I wondered about mosquito’s spreading the disease. We have people here with burgdoferi so it is possible it can be spread just the same.

I too have always thought that Mosquito’s could be a source of infection and are responsible for my Arthritis from Ross River Fever.
When I emailed Australian Biologics they said “quote”
I spoke to our Director re: your query on infection below: her reply was as
follows-
The Ross River Fever may have impacted on your immune system but it would
not be the source of infection.

I’m not sure quite what they mean by that statement, all I know is that since I had the Ross River Virus I have had a progression of Arthritis and joint pain, and can tick quite a few boxes in the list of symptoms.
I don’t think I have Lyme as such, but I do think I have a Mycoplasma type infection.

Go Julia! Let em have it!

Sandy [Qld,Aust]

[lynnie_sydney]

I’m not sure quite what they mean by that statement, all I know is that since I had the Ross River Virus I have had a progression of Arthritis and joint pain, and can tick quite a few boxes in the list of symptoms.
I don’t think I have Lyme as such, but I do think I have a Mycoplasma type infection.

What’s possible is that they mean the Ross River Fever could have been the trigger for the immune system succumbing to the Lyme symptoms rather than the infectious cause of it. Quite often our immune systems can cope with a host of pathogens, then one day not be able to cope – a physical and/or emotional stressor can depress it, so that it can no longer handle it. Lynnie
P.S. That being said, my AP/Lyme doc believe there are other vectors of Lyme

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)

[hmom]

Interesting thread – I don’t ever remember having a tick attachment or rash, but we certainly have mosquitos aplenty here, and years ago I shared a house with a roommate with dogs, and when they all left town for a couple of weeks, the place just exploded with fleas. I must have gotten at least a hundred bites, and they looked nasty and took a really long time to heal. The house was in the same neighborhood where we live now, and where just about all the dogs and a good number of people are being diagnosed with Lyme. !!!!!

[Rosemary Perth Aust.]

If you get the co-infections with tick bite, then I guess its possible from any insect even mosquito’s & fleas. So difficult when traditional medicine does not take Mycoplasma seriously, even test for it.

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