American / European Lymes

[Tidalrise]

Hi there,

I am from Richmond, Surrey on the outskirts of London and live near what has been identified as a 'Lyme disease hotspot'. I was diagnosed with MS in 1999 and have always thought my symptoms were different from those concurrent with MS. I only shared 'cog fog' and chronic fatigue and stiffness, particularly in the neck, shoulders a face. Weird! I told my neurologist I intuitively felt that it wasn't Multiple Sclerosis and have (fingers crossed) never had another significant relapse, just flare up of symptoms when under lot's of stress. I would say that's one of the main symptoms of my condition: when life is stressful ie: christmas, kids going to uni, relationship break-ups, high pressure demands, then I seem hyper sensitive both mentally and pysically. Then my neurologist and GP labels this as 'just stress' and prescribe anti - depressants which, in turn, is depressing! In UK, currently, Lyme disease has only recently entered into the chronic fatigue paradigm and I am endeavouring to flag it up as a very real possible cause to prevent others having to suffer, long term.

I am, at present, spreading an awareness to my local health authority but am still lacking a health professional to help me manage my condition.

I would like to know if American Lymes is different from European strains as this would help me identify what tests I need to get a proper diagnosis after so long.....Any knowledge, experience, advice would be very gratefully awknowledged.  

I guess, the more knowledge I gather (cog fog accepted!) the more I can devise my own protocol for a treatment plan and flag this up for others.

Many thanks,
Naomi Cassman

[JackieCalifornia]

Rico,

Your comment sent me back to my notes from when I was being treated.  Not sure I ever got treated for [documented] Anaplasmosis ... it was when I was having a hard time with yeast etc.

What's the usual med for it?  I saw doxy mentioned, but not definitively.

Just wonderin'.  :)

[Ricobord]

So sorry to learn about the virus.

Just know that Anaplasma does not go away by itself. If you have antibodies and you've never been treated properly for it, then you still have it.  

Unfortunately, many doctors do not understand chronic infection. They think that unless you have the signs, symptoms, and lab tests of an acute infection, then you're okay (even if you're obviously not).  Hopefully one of your doctors is willing to treat the Anaplasma.  It's not too hard to get rid of and you'll feel a whole lot better.  I'm sure it will be easier for your immune system to tackle the virus after the Anaplasma is gone.

[Tidalrise]

Just an update to tell the forum I tested double negative on Western Blot for Lymes but had 'anaplasma' and antibodies to European Tick Borne Encephalitis. Jeez, what's that all about then? I have a virus - a post viral condition - 'thinks'  Dr. Dryden who has now lost his central funding on the NHS -  which is very sad as he was extremely helpful and thorough.

Now I must admit I am confused and looking or an Encephalitis aware neurologist (I think)!

Since then my acupuncturist says my thyroid T3 and T4 are unbalanced and to take some bioidentical hormone. I must admit, I am pretty shell shocked and my original neurologist just told me to look for a new neuro in the West Country where I live now. Cuh!

[Ricobord]

I have since read a paper by a doctor in Australia who documented various patients test results, and he says he sees no consistent pattern in the Western Blot tests there.  

I don't know if that's true in Europe or not, but perhaps your doctor can at least order a Western Blot for you.  If you can know which bands reacted rather than just getting a + or -, then you could do your own research to see if those bands are Borrelia specific.  If you have Borrelia specific bands, you might be able to convince your doctor to start treatment.

Good luck!

[nutrinut_bob]

Doesn't stifle creative thought?  Well, you're right Jackie, they can't stifle the thought.  However mainstream medicine has some interesting words for it, like delusional.  I just given a disability based on supposedly being delusional about having filariasis in my hands.  Are these things a figment of my imagination?  Afraid not.  How could one get a tropical diseases in the northern US?  Work alongside a bunch of Yemeni's, where the disease is endemic, in a factory that has it's own mosquito population. Ah, the price of globalization!   I'd have a better chance of getting properly diagnosed if I moved to Africa or India, or the Philippines!  In the meantime, my hands continue to get bigger.  Tidalrise, there are herbs that are effective.  For the most part they require a lot more time than antibiotics.  I've been using herbals since late 2010, and a lot of things that packing various infections for over 40yrs are slowly getting better.  Joints no longer snap and pop is the biggest thing that has gotten better.

[Tidalrise]

Thanks so much for your info and so sorry to hear you have a variation of Borrelia.

Wow  - it all sounds so complex and numerical! I have recently decided  I cannot afford all these tests and stuff (coupled with the fact that the jury still seems to be out on tess effectiveness)so in the meantime,  I'm going to see a Lyme Aware naturopath who has had some success treating Lymes patients with herbs - hopefully.

At the very least, I beleive it will help me keep these little mites quiet until there is a clearer way forward. I know I can only take all the research in small doses as my brain can only assimilate so much!

I am also in counselling and eating a fresh food diet with lots of water and meditating lots.

Obviously, quality of life is pretty rubbish but this seems to keep me stable. If I do get t0 go ahead with Western blot tests and Ig then I will make sure bands 18, 31 and 41 are covered. Thanks.

Seems like you have to be a superpower to process all this and stay as well as is possible, under the circumstances!

May the force be with you!

Naomi : )

[Ricobord]

I have done lots of research on variations of Borrelia around the world, as I believe I got it in Queensland, Australia. Doctors are not precisely sure which species they have there, but they are seeing tests consistent with b.borgdorferi (North America), and b.garinii & b.afzelii (Europe). The government there is still in denial about endemic Lyme, despite hundreds of sick patients, many of whom have never left the country.  I probably acquired Borrelia Garinii there, which is the primary species in the UK and Western Europe.

My symptoms are consistent with the neurologic form of b.garinii in Europe. I believe this is part of why I tested negative on a blood screening test at a military hospital in California.  Most labs here use the B31 Shelter Island strain, which is a Borrelia Burgdorferi strain from New York.

I tested IGeneX positive on the IgM Western Blot with bands 18, 31, & 41. But this and my IgG were CDC negative.  Lots of people with Lyme do test "negative). Make sure you see all the bands on a Western Blot as there are a handful of Borrelia specific bands that are inexplicably ignored in most interpretations of the WB.

[JackieCalifornia]

Ah, I like your spirit!  Stay in touch with us -- Cheers!

[Tidalrise]

Hi there,

Thanks so, so much for all your info. I am ever grateful...... already in contact with Lyme disease uk, who are great and via them, contacted my local MP to raise awareness as he is responsible for Richmond and Bushey Park. (Full of deer and where I'm pretty sure I contracted Lymes). I  ended up in hospital for 3 weeks with an inflamed brain, my dog died shortly afterwards : (  12 years later, no relevant awknowledgement of this serious condition let alone treatment, despite having flagged it up to relevant specialists.  I have looked after myself, as best I can, despite my nearest and dearest leaving in exasperation or going into denial or just not being able to handle the situation. A living hell, really. How much damage a tick, the size of a pin head or smalller can inflict. Luckily, I am a writer and take comfort in the fact I can, at least, express myself.  I regularly have to pinch myself to believe this has happened to me. Luckily, I am  a rebel who cannot tolerate ignorance and injustice - which I think has got me this far. I have heard such a load of 'baloney' (as  American's so aptly say) from my neurologists (I have changed several times) that I'm surprised my ears can still hear at all!

I will check the links you suggest and report back. Right now, I'm off to the New Forest for some r + r (ironically another lyme hotspot)......I grew up in Virginia and went to beautiful wild beaches a lot, there, and remember someone always came back with a tick to be removed. It seems, the little f^(<r's are an inevitable part of my life! They will not win!

Thank you once again........Tidalrise

[JackieCalifornia]

Welcome to MedHelp Lyme!

Sorry you have reason to be here, but good for you to take an aggressive and positive approach to fight Lyme and help others.  I too feel like I am 'getting my own back' against the disease just by coming here and sharing strategies and information.

It is my understanding that there are indeed different strains of Lyme, and a good bit of research has been done in Scandinavia on the European strains.  Given the busy travel of humans and pets across oceans, at some point diseases will spread, and it's a matter of the testing keeping up with the different strains of the disease to make diagnosis inclusive.  However the general principles that apply to one strain probably apply to all.

I have run across interesting medical journal articles on Lyme in Europe, but have not followed up on all the links. I just searched on google:

europe lyme disease

and found many interesting links.

You may also be familiar with PubMed, which as I understand it is a US government-affiliated data site that allows easy searching and free access to medical literature across the world.  Here is a link to a random article about Lyme in (Southern) Europe, with other links to more articles, but it will give you a window into what is available out there:

www [dot] ncbi [dot] nlm [dot] nih [dot] gov / pmc / articles / PMC106265 /

Replace [dot] with a period and take out all the spaces, and it will give you a searchable link.  (The bot here won't let us post live links.)

We have had a few visitors to this website from the UK, and my impression has been that sadly there is a great deal of denial and/or ignorance about Lyme in the UK, which is also true in the US, but there seems to be more of a diversity of opinion in the US than in the UK and Canada, because we don't have national health.  Messy and inefficient tho our medical care system is, it doesn't tend to stifle creative thought.  Not yet.  Orthodoxy holds in some states here, but in many states, including California where I am, docs have freedom of conscience to practice as they see fit, for which I am grateful.  

As to finding a Lyme-aware MD in the UK, I am not clear on how best to do that.  I suspect there may be some progressive Lyme docs flying under the radar in the UK, but don't know how to best ferret them out.  

A search online for:

lyme disease uk

brought up some interesting links, if you have not already located them.

As to your specific question about what tests to have done, the basic Western blot/ELISA pairing may or may not apply, but I would guess it does; it looks in the blood for antibodies against Lyme.  How that would be affected by the different strains of Lyme, I don't know for certain, but these two tests measure the immune system reaction to a Lyme infection, so the variation in Lyme strain may not matter.  

A more sensitive test used here is PCR from Igenex labs in Palo Alto CA.  It looks in the blood for DNA of the Lyme bacteria, not the immune system reaction.  Igenex has a website you might check, and they are also quite user-friendly if have specific questions about testing.

Your efforts to search out and share information about Lyme and its co-infections are laudable, and I hope you will visit us again and let us know how we can help.

Sorry if this rambles; I've been interrupted a few times, but don't want to delay sending this to you for what it's worth.  Do stay in touch with us and let us know how we can help.  Lyme is the enemy of us all.