Lyme Disease

jcro

Unregistered wrote: »

Hey there,

I just had to reply when I saw that doctor's name mentioned.
Save your cash and don't bother with Sheehan. I went to see him, full of hope, and he refused to even re-test me for lyme as I had 4 week's doxycycline 4 years ago. Despite me having 2 positive elisa tests and western blot strains from 2 different labs, along wth textbook symptoms, he told me that the month's doxy would have cured me if it even had been lyme in the first place! That an 'expert' could be so behind the times is scary. The US docs generally agree on much longer courses being necessary to treat chronic lyme successfully. (I've been sick for almost 6 years).

Luckily enough, I found an excellent consultant rheumatologist in the UK who is treating me (after the elisa and western blots which he did, again came back positive) for lyme, and for co-infections which I also tested positive for. This will be a long road, as I've to have 12 weeks IV ceftriaxone with support drips and a cell repair programme and will be on oral antibiotics for quite a while, but after just 8 weeks I'm starting to see some improvement. I received 4 weeks IV cef 18months ago which almost completely cleared my joint pain (which was always my worst symptom-I could barely walk at my worst) to the extent that I'm off all steroidal and non-steroidal anti-inflammatories now. All of my neuro symptoms with the exception of headaches such as numbness and muscle twitching disappeared too, so the antibiotics definitely work. It's just knowing how long to stay on them for so that the disease will be completely eradicated that is a problem.

My advice is to get out of Ireland if at all possible. The doctors here did nothing for me except tell me that (a) I 'probably' had arthritis (to a previously healthy 21 year old!) or (b) that I 'probably' had ME and to get on with it. They tanked me up on steroids and painkillers (I too was on tramadol-yuck!!) and offered no assistance to actually getting to the root cause of my symptoms. Sorry if I sound bitter, but I honestly feel that if I was left at the mercy of Irish Infectious Diseases 'experts' I would never get better. There are some lyme literate doctors in the UK, Germany and Switzerland. Unfortunately this is costly, but if it's an option-I would grab it. Also check out the excellent group on Yahoo groups called Eurolyme. This is run by lyme sufferers and has been an invaluable source of information to me.

Although lyme is a nasty disease, at least it is treatable. I'm confident that now that I have a doctor who knows what he's doing I will make a full recovery inside the next couple of years. Just make sure that you find a competent doctor who follows the ILADS guidelines and will give you sufficient antibiotics to completely kill the infection rather than just dampen it down temporarily. Also try to get tested for co-infections, as if you have them, treatment for lyme alone may not be enough to completely cure your symptoms. And don't listen to ignorant docs who try to tell you that there's no lyme in Ireland! I know too many people who have or have had lyme for that to be true.

Best of luck, it's a long road but you'll come to the end of it eventually!!

Your message gives hope..

Would you please share the name and phone # and address of your doctor in the UK..

Have you ever heard of Doctor Jane Minton in Leeds hospital who is
supposed to be a lyme specialist.
Thanks.

LegacyUser

Hi there,

I've never heard of Dr. Minton I'm afraid.
From what I've heard, the best 3 doctors in the UK for lyme treatment are Dr O in Cardiff, Dr AW in Bolton and Dr D in Hertfordshire. I'll pm you less cryptic contact details ;-)
I believe some docs don't like their details being discussed on open forums. If anyone else wants any details I'll gladly pm them too!

Best of luck with your treatment,

M.

jcro

Thanks so much.Looking into options.
Good luck.

jcro

Dear Moderator,
I understand that you formerly worked at the Hampton lab and have a lab background. Can you share some info with us re: how the B. Burgfedori multiply in our bodies and if they do go through cycles of reproduction? I see in some of the lymes doc's that they talk about the need to treat throughout those cycles and i believe i saw that the organism multiplies about every 4 weeks. Also, do they have different kinds of cells - i saw the stuff about how some cells have walls and others don't and that those are hardest to treat. Most of this comes from the Bellescona (sorry the spelling is wrong) treatment guidelines. It would be nice to hear some of this from your knowledge and please share any links that you think would help. I know you can't comment on long vs. short treatment regimes, but it would certainly help to understand why longer treatment is probably needed for people who don't immediately clear or get early treatment. We also look fairly often at eurolymes.
Thanks so much for your time.

Tick Talk

If anyone is interested there's a couple of Lymie sufferers who have joined together to start a support group here in Ireland. We felt this was vital as there is so little knowledge of the disease and people have nowhere to go for support and advice.

If anyone is interested details of the group can be found at:

http://www.facebook.com/group.php?gid=44960753282

We also have a Petition to help make Lyme a notifiable disease here in Ireland.

If you're able to help in signing (or even just to click the link and read some of the comments by fellow sufferers and their families) we would be very grateful.

http://www.thepetitionsite.com/1/Lyme-Disease-Ireland

Take care everyone and good luck in your recoveries!

If anyone has recovered following treatment we would also love to hear from you - feel free to drop me a line on the board

Tick Talk

Hi all - we are a nats whisker away from reaching our target of 250 signatures on our Lyme petition. If you're a Lyme sufferer or know of someone with Lyme or maybe even have ME or MS and is worried about it being misdiagnosed (Lyme symptoms are very similar) or even an active outdoors person who are concerned that they could be at risk of Lyme then we'd love to hear from you. Once we have reached the target we're planning to send the petition to the Dept. of Health, the Health Protection Surveillance Centre and the European Parliament. Here's your chance to raise your concerns!

http://www.thepetitionsite.com/1/Lyme-Disease-Ireland

shaywest

quick question.
i live in south co.dublin next to some waste ground that is populated buy a family of sika deer.
they frequently hop over the fence and sit in the garden chewing the cud they are quite tame now and will let you pet them and will take a bit of bread from your hand.
i was wondering if anyone has any info on the prevlance of lymes in sika deer our old dog (sadly missed)used to pick up ticks from time to time.but none of the family have so far.
any info would be great,thanks in advance
shay.

Tick Talk

shaywest wrote: »

quick question.
i live in south co.dublin next to some waste ground that is populated buy a family of sika deer.
they frequently hop over the fence and sit in the garden chewing the cud they are quite tame now and will let you pet them and will take a bit of bread from your hand.
i was wondering if anyone has any info on the prevlance of lymes in sika deer our old dog (sadly missed)used to pick up ticks from time to time.but none of the family have so far.
any info would be great,thanks in advance
shay.

Hi there - good question. Hosts of ticks can include sheep, deer, mice and birds and of course pets can pick them up too as the ticks can detect carbon dioxide from passing traffic (humans or animals!). They adopt a questing position which means crawling up to the edge of a piece of grass or end of an low overhanging branch so it could be easy to pick them up accidentally. If a tick gets brushed onto you it apparently will search for a while before finding a tasty warm spot to feed, so if anyone can pick them off quickly enough they should hopefully have a much less chance of becoming infected. Whilst searching for articles on sika deer in particular I did find some research done in Japan and their conclusion was:

"Wild sika deer are commonly exposed to two stages of vector ticks, adult and nymphal I. persulcatus, similarly to A. speciosus ainu. In this study, we detected spirochetes in the skin lesions of sika deer by a PCR method and spirochetes in the midgut of two stages of I. persulcatus feeding on sika deer by a culture method. We therefore conclude that, in the wild, deer could be a source of Lyme disease spirochetes in ticks and could play an important role in spreading the spirochetes in ticks of different generations."
http://aem.asm.org/cgi/reprint/61/4/1641.pdf

One good thing to note is that ticks need moisture to survive as they can dehydrate. Things you can do is keep grass well cut back, brush and clear leaves during the Autumn and wear light clothing so you can spot any intruders! Insect repellants are a good find too.

Some top tips from BADA-UK a Lyme disease charity can be found at http://www.bada-uk.org/defence/control/domestic/domesticenvironment.php

I have added below some of their tips below in relation to deer control:

Boundaries

Use fencing to divide gardens from deer habitat. 8 foot fencing is normally needed to effectively keep deer out.
Deer are often the favoured hosts to complete the life cycle of certain tick species. Areas frequented by deer are likely to have a larger population of female ticks that are full of eggs. The female tick will lay her clutch of many thousands of eggs on the ground. These eggs will later hatch into larvae, which will search locally for a blood meal. Keeping deer out of residential areas, combined with other defensive methods, can help lessen the local tick population.


Selective planting can help to deter deer from the garden. They will often return to a favourite food source, so a border full of plants that are distasteful to them will help to discourage them from feeding in your garden. Some examples of plants that are reported to be repellent to deer are: Catnip, Chives, English Marigolds, Garlic, Lavender, Marjoram, Onions, Oregano and Thyme.


Deer can be fickle and there is probably no completely deer-resistant plant but some plant species do seem to be less attractive or distasteful to them. The following table lists plant species that have been identified by agricultural and horticultural researchers as being less attractive to deer. As this research was performed in the U.S., some plant species are American. Because the table is compiled from data from different research projects, some entries are the specific plant species, while others are only the genus. The growth habits of the various species may vary in different climates and with different soil conditions.


Deer resistant plant info. can be found at http://www.bada-uk.org/defence/control/domestic/planttable.php

LegacyUser

kangaroo wrote: »

I have heard of some cases of people who have had a diagnosis of ME or CFS responding well to antibiotic treatment.

Surely that was a MISdiagnosis of ME or CFS who actually had lyme

LegacyUser

Unregistered wrote: »

Surely that was a MISdiagnosis of ME or CFS who actually had lyme

Antibiotics are useful for more things in medicine than just Lyme disease.

Tick Talk

Unregistered wrote: »

Surely that was a MISdiagnosis of ME or CFS who actually had lyme

The worst thing about Lyme is that you can feel horrible on antibiotics. They call it a herxheimer reaction which is due to the die off of the borrelia (Lyme) bacteria causing havoc in the body. Then as the bacteria load lessens a Lyme patient can start to feel better. A herx can happen every 4 weeks or so until the disease is finnaly cleared (which in chronic cases can take years!)

As someone mentioned above - if you get better (or worse) on antibiotics, your ME/CFS diagnosis could possibly be Lyme disease.

http://en.wikipedia.org/wiki/Herxheimer_reaction
http://www.lymebook.com/jarisch-jarish-herxheimer-reaction-herx-lyme-disease

Tick Talk

Hi there Sorella - I had an ME diagnosis and ended finding out myself (through private testing) that it was Lyme. My bloods were sent to a lab. in Germany for a test called Melisa LTT. I also had a CD57 test which shows how immune suppressed the body is due to chronic Lyme and it showed severe immune suppression. This suppression can cause a decline in antibodies which is why many Lyme tests using the normal Elisa tests are negative (they can also be negative in early Lyme too).

There's an excellent article written in the UK in the correlation between ME and Lyme. Also some cases of MS, Parkinson's and Lupus find they have Lyme bacteria in their blood!

http://www.mesupport.co.uk/index.php?page=borreliosis-lyme-m-e

sorella wrote: »

I was about to ask about the correlation between Lyme and M.E; thank you.

There seems to be so much overlap?

I have had M.E for some 40 years; misdiagnosed for 30 of those. No real testing done. Because of bad treatment there are various oher health issues now and my trust in drs where this is concerned is gone forever.

Certainly auto - immune problems ; the only time the Uk drs got really worried was when the Raynaud's became so bad even they had to admit it was real.

We wondered then re lupus; there seems again so much overlap.

Again; thank you for this thread.

And ticks are epidemic in Ireland now; we live in sheep and deer country and I pick them off the cats with great aplomb now, and have had several bites.

Whichever it is, I live with and within it now; and get a huge amount out if life.

Good luck to all.. and blessings

_Whimsical_

Tick Talk wrote: »

Hi there Sorella - I had an ME diagnosis and ended finding out myself (through private testing) that it was Lyme. My bloods were sent to a lab. in Germany for a test called Melisa LTT. I also had a CD57 test which shows how immune suppressed the body is due to chronic Lyme and it showed severe immune suppression. This suppression can cause a decline in antibodies which is why many Lyme tests using the normal Elisa tests are negative (they can also be negative in early Lyme too).

Thank you for all the information you've shared Tick Talk.It's all been very interesting.
Did you send your blood away for analysis privately or was it sent by a doctor? If you sent it privately do you mind if I ask what the name of the lab you sent it to was?

Tick Talk

chilly wrote: »

Thank you for all the information you've shared Tick Talk.It's all been very interesting.
Did you send your blood away for analysis privately or was it sent by a doctor? If you sent it privately do you mind if I ask what the name of the lab you sent it to was?

No problem - there are 2 labs. I used. The 1st one I sent the bloods myself using Fedex courier to Germany and the 2nd one I arranged through a private hospital in the UK as I was seeing them anyway for a second opinion. The 2nd lab. you can also send privately but the downside is that they like to use TNT which is more expensive and don't always pick up daily which for blood samples is critical. For both tests you'll need to contact the lab. explaining which tests you're after and they'll send the test kit and an application form. You arrange for blood tests using the labs. own tubes preferably as early in the week as possible. I arranged mine Monday morning and drove them to a Fedex depot right next to the airport and placed on the package - urgent, next day delivery. The results come back within about 1-2 weeks.

Labs as follows:

Melisa LTT - do allergy tests, Lyme LTT (lymphocyte transformation test) and co-infections testing (Bartonella/Ehrlichia/Babesia)

MELISA Diagnostics Ltd
London House
243-253 Lower Mortlake Road
Richmond, TW9 2LL
United Kingdom
Phone +44 2089 489 558 Fax +44 2089 488 948
Email london@melisa.org
http://www.melisa.org/borrelia-lyme-disease.php

Borreliose Centre Germany - same as above but have their own LTT test as well as co-infections as above but also other co-infections such as Mycoplasma, Toxoplasma etc.

Also, more crucially they do the CD57 test which is used to detect immune suppression caused by chronic Lyme infection.

B-C-A Betriebs GmbH & Co. KG
Morellstraße 33 · 86159 Augsburg
Phone +49 (821) 455 471-0
Fax +49 (821) 455 471-5
Email service@borrelisoecentrum.de
http://www.borreliosecentrum.net/index.php?id=97&L=1

Tick Talk

Lyme Disease: Under Our Skin

Members of Face book group Tick Talk Ireland are hosting the eye opening DVD “Under Our Skin” (a film documentary about Lyme disease), across several parts of Ireland; including Galway, Kerry & Kilkenny.

Lyme disease, a tick-borne infection, is spread widely across North America and Europe and has become an increasing danger across UK and Ireland.

Symptoms can be dramatic and life changing, as they mimic many other illnesses such as MS, ME and Parkinson’s. Early recognition and treatment is vital.

Check out the following dates for Under Our Skin in Galway.

Entrance is free, but seats may be limited.

Ballinasloe Library – Thurs June 18 (6pm - 8pm)
Westside Library – Sat June 20 (3pm - 5pm)
Oranmore Library – Wed June 24 (6pm - 8pm)

Not suitable for young children!

To view a trailer of the movie go to: http://www.lymeinfo.net/underourskin.html

The_Conductor

Keep ontopic- and no cross posting in the ME threads etc.

Regards,

SMcCarrick

Tick Talk

Has anyone found a consultant willing to discuss and treat chronic Lyme disease here in Ireland? You are welcome to message me privately as many forums don't like discussion of doctors in public forums! Ireland needs some Lyme literate consultants desperately as many severely ill people are having to go abroad to the UK, Germany or the States which is an additional burden to them. As a reminder, many early caught cases of Lyme can be treated successfully, but those suffering long term have greater complications and longer durations of treatment to completely eradicate the bugs. More understanding is needed within the medical system.

With many thanks and best wishes

Jenny, Tick Talk Ireland

LegacyUser

Hi,

We were on holiday in northern Italy (Tuscany) a few weeks ago (mid August) and the temperature got up to the mid 40's celcius.

One morning my wife woke up covered in what we thought were mosquito bites (there were a few around though not that many - note I did not get bitten). Beside the pool there were loads of horse flies that were pretty nasty and did give a good bite.

On the last day I got a few bites that were very itchy but they went away. So did my wife's but when we got home, about 2 weeks later, she woke up one morning with all the bites having reappeared. They appeared in what I have seen referred to as the "bulls eye" rash. red inflamed center, a yellow pussy looking ring (that looked like it was under the skin) that was up to 2 cm in width (the ring width, not diamater of the rash) plus a large red area outside the ring. they were all over her legs where she had been bitten.

She went to the doctor and was given some antibiotics which made her feel quite sick and she didn't complete (left 2 out of 28 I think). anyway swelling/rash went away and she thought nothing more of it. That was exactly 2 weeks ago. Then last Friday she developed a rash on her torso (NOT where the bites were) that became very inflamed and was very itchy. we were out in a restaurant and when we came out she got a dose of the chills.

Again in bed that night she got the chills. on Saturday she went to the doctor again and he gave here steroids and a steroidal cream. What was amazing about this rash was that if she got too warm (went to bed Sat afternoon) the rash appeared very quickly and then went down again over a few hours. It moved all over her upper torso and became very red for a while then would almost disappear. it then started moving down the arms to the hand and down the legs to the feet, again she got the chills (Sat night in Bed). Sunday morning the rash was completly gone - you would never have known it was there in the first place.

She is, though, still very itchy all over and quite worried. I then stumbled on lymes disease and when I saw the pictures of the rash they were identical to what she had 2 weeks ago. She is going to see her usual GP tomorrow (the other 2 times were on a Saturday and was in a clinic in Dublin). Note the Doctor that saw the original rash is not her normal doctor.

One last point that may be relevant is that she started to menstrate on Friday.

What are people's thoughts on this and what should she say to the Doctor?

Thanks

The_Conductor

IsThisLymes? wrote: »

Hi,

We were on holiday in northern Italy (Tuscany) a few weeks ago (mid August) and the temperature got up to the mid 40's celcius.

One morning my wife woke up covered in what we thought were mosquito bites (there were a few around though not that many - note I did not get bitten). Beside the pool there were loads of horse flies that were pretty nasty and did give a good bite.

On the last day I got a few bites that were very itchy but they went away. So did my wife's but when we got home, about 2 weeks later, she woke up one morning with all the bites having reappeared. They appeared in what I have seen referred to as the "bulls eye" rash. red inflamed center, a yellow pussy looking ring (that looked like it was under the skin) that was up to 2 cm in width (the ring width, not diamater of the rash) plus a large red area outside the ring. they were all over her legs where she had been bitten.

She went to the doctor and was given some antibiotics which made her feel quite sick and she didn't complete (left 2 out of 28 I think). anyway swelling/rash went away and she thought nothing more of it. That was exactly 2 weeks ago. Then last Friday she developed a rash on her torso (NOT where the bites were) that became very inflamed and was very itchy. we were out in a restaurant and when we came out she got a dose of the chills.

Again in bed that night she got the chills. on Saturday she went to the doctor again and he gave here steroids and a steroidal cream. What was amazing about this rash was that if she got too warm (went to bed Sat afternoon) the rash appeared very quickly and then went down again over a few hours. It moved all over her upper torso and became very red for a while then would almost disappear. it then started moving down the arms to the hand and down the legs to the feet, again she got the chills (Sat night in Bed). Sunday morning the rash was completly gone - you would never have known it was there in the first place.

She is, though, still very itchy all over and quite worried. I then stumbled on lymes disease and when I saw the pictures of the rash they were identical to what she had 2 weeks ago. She is going to see her usual GP tomorrow (the other 2 times were on a Saturday and was in a clinic in Dublin). Note the Doctor that saw the original rash is not her normal doctor.

One last point that may be relevant is that she started to menstrate on Friday.

What are people's thoughts on this and what should she say to the Doctor?

Thanks

We are not allowed to offer medical advice on this forum. By all means come back when you have a diagnosis from a qualified medical practitioner, but until such time, I am locking this thread. Please PM me to reopen when you have a diagnosis.

Regards,

SMcCarrick