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Beware of Lyme Disease

May 2015 I was blissfully unaware of Lyme disease being present in Europe despite my being from PA which has about 38% of lyme cases nationwide. I discovered a tick embedded in my side a day after a walk between villages on a forest path on the border of Germany/Switzerland/France....near Basel. I went to a doctor who dug it out and told me I need not worry about lyme unless I got a bull's eye rash within 3 weeks....if not, all was fine. I was not given any antibiotic treatment...just told to watch. I had a lingering flu at the time and had been traveling for 6 months. After 3 weeks and no rash, I thought I'd dodged a bullet. The flu I had lingered. I had a bout of insomnia and lots of fatigue. A month later (still in Europe) I had some falls, headache, continued fatigue and then was hit over the head with flu, fever, and arthritis in both knees....so severe I could hardly dress or bend knees and pain reliever didn't touch it. There always seemed to be a reason: worn down from travel, vulnerable to infection, etc. When I got home, 2 months after bite, and rest did not resolve the terrible fatigue, and my eyes even were inflamed with infection, I woke up one morning with the thought of Lyme disease for the first time since May. I looked it up on Mayo Clinic website and saw I had just about every symptom except the rash. My heart fell when I saw that only a small percentage get the rash. The doctor I saw in Germany was ill-informed....actually was a Brazilian woman who apparently wasn't well educated in the importance of immediate treatment with the attached tick in a high lyme area. This began a 3 year nightmare of fighting for my life and vitality which hasn't ended yet. It is critical to get antibiotic treatment ASAP before it disseminates and becomes tenacious chronic lyme disease which has no clear cure at this point. I went through 7 months of antibiotics (which I don't recommend after a couple months) and years of herbal antimicrobials, detox, and support just to try to keep an upper hand on it. Every day is a challenge. It is also important to know that lyme is often accompanied by other horrid tick borne infections which complicate healing immensely. Lyme is a sophisticated disease that has evolved excellent strategies in evading treatment. So my advice is the be vigilant in inspecting your body and getting immediate treatment for tick bites. The day I acquired the tick bite, I was wearing shoes, socks, long outdoor pants, a Gortex rain coat, etc. The tick found its way up my pants and latched onto my waist on that fateful muggy May day. :(

Posted by
5784 posts

Thanks for the alert. I has though that Lyme was a North American concern but apparently it has spread to Europe and Asia.

Found this fact sheet:
https://ecdc.europa.eu/sites/portal/files/media/en/healthtopics/vectors/world-health-day-2014/Documents/factsheet-lyme-borreliosis.pdf

• Lyme disease, or Lyme borreliosis (LB), is a bacterial disease
transmitted to humans through the bite of infected ticks. It is a
common disease in Europe.

• The number of cases in Europe has increased steadily, more than 360
000 cases having been reported over the last two decades.

• Central Europe is the region with the highest incidence of LB, as
reported by the Czech Republic, Estonia, Lithuania and Slovenia.

Posted by
1602 posts

Sally, thank you for the information and warning. I’m so sorry you have had to suffer with this.

An acquaintance of mine got Lyme disease while hiking in southern California, an area not known for Lyme. She too has dealt with the pain and fatigue for close to 4 years. Her husband has been the primary care giver to their young daughter. Her drug treatment is very expensive and fortunately she is in a financial position to cover the cost.

Posted by
3186 posts

I'm thinking I may try to beg a prescription from my doctor or if necessary, a friend who's a doctor, to take with me if/when I go to any of these countries. Then if I get a tick, I'm prepared.

Posted by
4250 posts

I have had Lyme's (from a Door County, WI tick) as has my daughter (from a tick in our backyard in suburban MN). Not at all fun. The incubation on Lyme's is about 10 days. It is typically not treated until there are symptoms. Even in MN, known for Lyme's, I was misdiagnosed. I had the bull's eye, but tested negative to the test. I had all the symptoms, so I got a second opinion. That doctor's opinion was, sometimes you need to look at the patient in front of you. If you are given the test, know three things. First, it often shows up negative, because your body has not developed the antibodies yet. Two, the test, especially if its the Western Blot, often incorrectly reports negative. Three, if you start taking the antibiotic (doxcycline) on your own, it may be even harder to diagnosis properly. In my daughter's situation, she had half a bull's eye because the tick was in the crease behind her ear. She started the antibiotic and the dr.'s office called with negative result a few days later, so doxcy was stopped. She was still sick a month later and at that point she did in fact test positive and restarted meds. Both my daughter and myself recovered completely with no relapses. I personally think its really important to have a doctor evaluate before treatment and seek additional opinions if you still have concerns.

Posted by
2018 posts

WOW! I am so sorry to hear this, Sally. But I do thank you for the education. I know very little about lyme disease and had no idea it could be so devastating. Again, I am so sorry this happened to you.

Posted by
3304 posts

Sally, I read this and felt so horrible for you that the doctor you saw was so either uneducated about Lyme or just inept. I had a tick bite when walking through the woods of the Eastern Shore of Maryland back in the mid 90s at a "Waterfowl Festival". I found the tick that night, tweezed it out of my inner thigh myself, put it in a plastic bag and took it to my doctor the next day. She gave me a prescription right away as a preventative measure. We found out a few days later that it wasn't diseased.

Still, she told me any time I go into woods or places with tall grass, I need wear long pants TUCKED INTO TALL KNEE SOCKS and wear long sleeve shirts that button at the sleeves.

You make me wonder the competence level of MDs when we travel. The horror you endured could have been prevented.

Posted by
3186 posts

jules, thanks for the info-I will now change my plan to taking it if I have symptoms.

Everyone-I suspect that some American doctors are just as clueless as the one in Germany.

Posted by
21065 posts

Cluelessness knows no geographical borders. In 1972 I developed gastro symptoms and nausea after retruning from a long trip to Europe that included Leningrad/St. Petersburg. The university health clinic doctor I saw on Day 5 asked whether I might be pregnant and sent me away empty handed despite the travel history I had disclosed. Still sick on Day 10, I returned to the clinic only to be given a prescription for a tranquilizer. Needless to say, it was not effective in treating the parasitic infection I had gotten from the water in Leningrad. Fortunately, giardiasis is usually self-limiting and not serious--and not nearly as umpleasant as norovirus, just a heck of a lot longer-lasting.

Posted by
8403 posts

Sally, Thank you for bringing this up. I had *(edited) a Lyme-infected tick bite hiking in Burgundy about ten years ago. We never saw the tick on the front of my thigh, but luckily I developed a bullseye. It seems even larvae can be infected. Back in the States I googled unusual mosquito bite and Lyme disease popped right to the top with photos.
The nurse practioner I saw the next day didn’t test but prescribed the antbiotic because only Lyme forms a bullseye and the test is unreliable. BTW, the antibiotics are very strong, so not to be taken as a precaution without reason.

Did you know that the Ice Man had Lyme disease. It’s been around for a while, even in Europe.

I hope you are back to normal soon, Sally, and anyone else who has had this.

*Edit: based on Sally’s next post, I’ve changed Lyme disease to infected tick bite.

Posted by
85 posts

Yes, Lyme goes back beyond the 5300 year old ice man found in the Tyrolean Alps. Thus, it has had thousands of years to develop its sophisticated survival strategies. There are no reliable tests. Lyme is a clinical diagnosis. Much more research needs to be done. When Lyme is treated soon enough, it is not disease. The disease is what occurs in chronic disseminated lyme. So keep your eyes wide open. As much as I hate antibiotics, if you have a tick attached to yourself, I would strongly recommend a 2 to 3 week course of Doxycycline. Unfortunately, Lyme went systemic with me and embedded in nervous system before it was treated. It is a very serious epidemic. It even killed a friend of mine who was a PA tree farmer. Nothing to take lightly. Big warning signs: combinations of summer flu, acute arthritic pain in knees out of nowhere, extreme fatigue, neck pain, roving body aches, insomnia, inflammatory eye issues, pain in chest, balance issues, etc.

Posted by
3186 posts

acraven, hopefully US doctors are more savvy now-they ask if you've been out of the country recently which should make them expand their range of possible diagnoses, and if they don't ask, we definitely need to tell them!

Posted by
190 posts

Thank you very much for taking the time to write all this down. I'm going to print it up to remind myself.
And thank you to all who added their advice and experiences. All so important and good to know.
I, too, am so very sorry for your suffering and will think good thoughts for your steady, continued recovery.
Take care.

Posted by
3428 posts

Unfortunately, Lyme isn't the only disease that causes the 'bull's eye'. Rocky Mt. Spotted fever does also. And it is no longer limited to the western US. My husband was bitten by a tick infected with RMS ore than 15 years ago. He got it working in our backyard- and we live in North Carolina. RMS can affect hearing and the heart as well as being a systemic disease. He has lost more than 75% of his hearing and has a heart murmur now. Everyone should take precautions to avoid tick bites and contact their physician if they are bitten. RMS and Lyme (and other tick borne diseases) are not quick, simple to deal with infections. They can have life-long consequences. Bless you Sally.

Posted by
1937 posts

Sally,
Oh my gosh...you have been thru the mill.

HUGE thanks for posting this important reminder.......not only for travelers but those of us who simply go outside in/near/under ANY vegetation whatsoever or who are near pets that do so. I'll start spraying DEET on my pants legs again, but that is no guarantee, I realize.

Makes me want to give up my gardening hobby and take up knitting (inside) after reading your experiences. Gosh, I am so glad you were able to finally figure out what had happened and finally get appropriate treatment, but so very sorry for all you have had to endure (and still do) . It really is frightening to realize what can happen, and I'm sure you were both frightened and frustrated (and continue to be).

The Mayo Clinic site is fabulous source of info.

A former governor of our state battled Lyme disease several years ago.

Posted by
239 posts

So sorry for the poster and others who have Lyme from a tick bite. People think I am paranoid about ticks but this confirms that my paranoia is not unreasonable! And also western Europe has another disease called tick borne encephalitis, which people here in Sweden where I am now are very aware of. Metro has many signs reminding people to get vaccinated, but at least there's a vaccine. Probably not available to me as a visitor. I have insect repellent with me and will use when I am walking in the country. In NC where I live I don't garden anymore in my yard because of possibly getting a tick bite.

Posted by
85 posts

Thank you Maggie, Carole, and all. There are other co-infections/diseases acquired simultaneously with Lyme that complicate healing and can be just as problematic. Those diseases actually form a biofilm with the lyme bacteria and together have formed a very effective strategy to evade treatment. Also, some of those infections, like Bartonella, are also transmitted through flea bites. Who would have known? Often one's immune system can fight it off or at least keep the upper hand. God have mercy on all who suffer this and other dastardly diseases. Be safe.