Anyone here experienced with European Lyme?

I'm an American but had a tick bite outside Barcelona, Spain in June 2013, followed by the tell-tale EM rash, although at the time I didn't know what the rash was and never had it checked due to a strenuous travel schedule. Four weeks later I became seriously ill, saw nearly 20 doctors with no results, and it was not until late September 2013 that I researched Lyme and saw the bullseye rash, putting everything together. Between July and now had Doxy (2 mos at 400/mg/day), and smaller amounts of Levaquin, Azithromycin, and Augmentin, to no avail.

While back in Europe for work (Germany) I asked to be tested to confirm infection (which it was (positive using an LTT but negative on a standard serology test), along with resolving (I guess due to the antibiotics) ehrlichia). Now I'm back in the US and can't find a doctor who will accept the German test result (ELISA and C6 here are negative) or who is willing to believe me that I had the tick bite and rash - so I'm stuck with "chronic fatigue" as the diagnosis. Anyone else here picked up borrelia in Europe (which is usually gariini or afzelli, not burgdorfori) and if so, any insight into treatments in the US? At this point I'm about ready to book myself two months in Berlin.

Symptoms: fatigue, "bugs" crawling in my forehead, loss of concentration, general malaise and unwell feeling, much worse in heat than cold

Post Edited (AmericanEurolyme) : 12/22/2013 2:56:13 PM (GMT-7)

Hi there,

I live in Germany and contracted Lyme and Bart in Summer 2011.

Should you have any questions.......ask away,I had a Western Blot,positive for Burgdorferi,too.

Tickled

You are most welcome Traveler
we're all here to help eachother

AmericanEurolyme...

I tested positive for Garinii, and hadn't been to Europe. I contracted it on Block Island, RI.

Please let me know if you find out what strain you contracted...I'd like to compare symptoms.

I had been severely ill for over 8 years (homebound for over 5 years), but am well now (thanks to mild hyperbaric, which I did at home). Traditional treatments didn't work for me at all, but I was not diagnosed as quickly as you...

Hi AmericanEurolyme...

My symptoms also predominantly neurological, but they really covered every body system! The neurological symptoms were the worst...severe burning pain 24/7 over entire body, head pain from hell, cognitive impairment, numbness, sensory overload, inability to tolerate sensory stimuli (homebound for 5 years), toxicity, night seizures, insomnia....no relief for 8 years...ever...shall I go on :)

It seemed like a very virulent strain, because my symptoms were beyond even what many LLMD's had seen, and ultimately, they said there was nothing they could do for me (I saw MANY...even paid some of them to come to my house...).

Eventually, I became so toxic that I was unable to do any formal treatments for 5 years...which is when I started self-treating with mHBOT at home...

I am interested in the protocol you are going to be on if you decide to start HBOT treatment...there are some things you should be aware of regarding the pressure/duration that the research shows is beneficial for neurological conditions...many clinics are not up on this research, and treat at higher pressures/durations than is recommended...

I have done an enormous amount of research, and can share sources with you...

Phioph, would you please start a new thread with that info? I'm sure many would want to see it and if it's in it's own thread - with the title being something about mHBOT - it would help many find it easier.

Thank you!

I'm planning to start it in a clinic for a few weeks but it sounds like it will take a while?

Usually clinics offer packages of 40 "dives"...which is not long enough to treat Lyme effectively. If I had quit at 40 dives, I would not have recovered. This is why I encourage people who have become chronic to rent, buy, or cooperatively share costs of a mild chamber, which can be done at home long-term.

Do you have a prescription for HBOT to take to the clinic (it is required, unless the clinician can prescribe), and if so, what at pressure/duration does it dictate?

One of the tests I had was from Immunosciences Lab, Inc., which tested for the European strains...

AmericanEurolyme,

In my honest opinion...doing just a "few" sessions of hyperbaric to treat Lyme Disease would be a waste of your money and time...it is a cumulative process that takes time and consistency.

Based my own experience/observation, and after talking to many, many people who have "tried" hyperbaric, I can tell you that inconsistency and quitting treatment too soon leads to treatment failures, and has led some to believe that hyperbaric is ineffective, when actually it is due to an insufficient protocol. I believe the reason I was successful is because I treated one hour daily, at mild pressure (1.3 ATA) with supplemental oxygen (via oxygen concentrator) for an entire year before I took my first day off...and I continue to use my chamber.

I'm not trying to discourage you AT ALL...just being realistic and trying to help you make an informed decision. In my experience, I have found it to be unaffordable for most people to do their entire treatment (for Lyme Disease; many other conditions do not require extended treatments) in a clinical setting, as clinical treatments are usually very expensive, and it makes more sense practically and financially for someone to spend the money on their own chamber so they can treat for an extended time.

As I mentioned before, you also have to be mindful of the amount of pressure they are using in the clinical setting, as many are going by older protocols (higher pressures) that are now being found to be less effective (and possibly harmful) for neurological conditions...

By all means, then!!!