new here looking for an opinion

Hi all first time poster and I apologize this will be a long one!

I'm just looking for an opinion from some people who have had a Lyme diagnosis.

I'm an American living abroad in a country that does not really have Lyme or ticks ,but come from an area where ticks are rather prevalent (as in, we would go in the woods and our parents would check for ticks when we were young). I've lived abroad for 2 years.

Back in October - November of 2016 I went on a trip home for a month visit. During that time I had been near a wooded area for a bonfire. I even helped remove ticks from a friend's dog. I never noticed a bite or a rash. After my trip home I went abroad again (same country where Lyme is nearly unheard of) and was fine until December of 2016. In December I was at work and noticed that I was dizzy (like had to hold on to something dizzy) but made it through the day (I figured it was just a hangover as I was drinking the night before). The next day I was -still- dizzy (not vertigo though as I didn't have a sensation of the room spinning or myself spinning). This dizziness eventually lessened but was constant for a month or 2 before I finally decided to see a doctor after the dizziness became more than just a minor annoyance. I've since been to many doctors and the only diagnosis I've had was possible vestibular neuritis.

After about 6 months of this and having had normal bloodwork, MRIs, CTs,ABEP, hearing test, heart ultrasounds and stress tests the doctors (ENTS, Neurologists) basically told me to just wait and see if it goes away on it's own. During that time my vision started feeling "off" I still can't describe it exactly, I can see fine but it occasionally is blurrier than usual I guess. I asked 2 doctors about MS and they said no that that would be unlikely because of the normal ABEP and MRI. I also started having pain in my legs (usually mild but with varying intensity) and maybe about 3 months ago pain specifically in my knees(I also have pretty bad fatigue, 4 hours of work and I want to lay in bed the rest of the day). I figured the pain was due to me always keeping my leg muscles tense due to feeling constantly off-balance so in subsequent appointments didn't make a fuss about it.

My most recent doctors appointments for this issue both an ENT and Neurologist said they no longer thought the issue had anything to do with my inner ear (I never had nystagmus and never had a sensation of "true" vertigo) but they all said to just wait it out. At some point a friend from home suggested that maybe it was Lyme disease.

I went to an infectious disease doctor to check this out and he told me that Lyme disease was so rare even in the states that I shouldn't worry about it(I wanted to argue that my father's dogs have had lyme, a cousin had lyme and my sister had lyme so it wasn't very rare in my hometown but decided to let it go). He also said that they didn't have the test in this country and that even if they did it wasn't very accurate anyway.

He then sent me to another neurologist who told me he couldn't help me as all my neurological exams had been normal and objectively I don't display any neurological symptoms. So at that point I kind of just decided to do what the doctors said and wait it out. The off-balance feeling never stopped and neither did the leg muscle pain but eventually I got to the point where my balance felt maybe 50% better and I was feeling hopeful that maybe it was just uncompensated vestibular neuritis all along (my thinking on this was "well what other condition would just spontaneously begin to resolve").
My legs and knees still had varying degrees of pain but it was bearable and I told myself that if I just relaxed my muscles more when standing still that pain would subside (it didn't). After maybe a month or 2 of my off-balance feeling being about 50% better I had a few bad days that scared me but then within the past 2 weeks it's been progressively worsening again.

I decided to do a consultation over the phone with a doctor from back home. That doctor seemed pretty convinced that my issue is Lyme disease(he said the testing I had done would rule out most other causes of dizziness) and he in fact was the one who brought it up not me. With that information and with some research I was able to track down a hospital in this country that DOES have a test for Lyme and I'm going to go and try and have this done today.

I guess after all that information my question is, how much does my experience align with others here who have a Lyme diagnosis? I know that depending on the test there is a high rate of false-positives and false-negatives for Lyme so I guess I am just wondering how much effort I should put into trying to find out if Lyme disease is the cause. I'm not 100% sure what type of Lyme testing they do here specifically ,but it looks like IFA tests and Western Blots are available. Again sorry for the long post I appreciate any feedback!

Post Edited By Moderator (Girlie) : 8/10/2017 12:34:35 AM (GMT-6)

Here are some articles that I've found helpful

www.prohealth.com/library/showarticle.cfm?libid=29861&utm_content=buffere0f74&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
It's rare that ticks carry just Lyme. Most of us have Lyme and Bart or Lyme and Babesia or Lyme and both B's. Other's hit the jackpot and get more than 3. Don't spend the money or search for tests for the co infections. They are less accurate. They are treated based on symptoms.

lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html This explains Lyme testing and why a "negative" test with Lyme specific bands is really positive.

www.betterhealthguy.com/ An excellent Lyme site. He had Lyme and is dedicated to helping others and learning as much as possible and sharing the info.

Hey all thanks for your replies I'll be sure to leaf through some of that information. And thanks for breaking up my original post, I wrote quickly before heading to the hospital. I'm in Taiwan and the only known cases here are imported and there have only been 11 total cases here since 2007 (hence it taking a minute to track down a hospital.)

I went for my test today and apparently the bloodwork needs to be sent off to the CDC in Taiwan for testing so I don't know specifically what kind of test they will do. The doctor said that it should be 1-2 weeks for results.

I have another question though the doctor I saw today said that typically if you have Lyme disease there are some abnormal findings in bloodwork for your kidneys and liver so he ordered a work up for that too. Is this true? I've had bloodwork about 3 times since this started and everything was normal so does that make Lyme less likely?

Of course you should be posting here. You are looking into Lyme disease...and we want to help you.

I didn't have any abnormal lab work for my liver and kidneys. I have a file about an inch thick of lab work - my regular Dr. was trying really hard to find out what was wrong with me.
But my liver and kidneys were fine.

Yes, those symptoms could be lyme disease.

Thanks so much for your responses! It's much appreciated. I'm at the point where I feel like I'm going crazy sometimes. I wonder much of the time when I notice something new going on if it's really a new symptom or if I'm just being hyper vigilant, or if it's all a stress reaction. It's nice to have other's to talk to about this! I go to see the infection doctor again tomorrow. I'm not sure what for, they simply asked me to come back when I had my test last week. I'm assuming it's just to get the results for the regular bloodwork I had done last Thursday. I'll definitely ask him about the new symptoms.

I'll also ask about what to do if the Lyme test comes back negative and hopefully they can point me in some kind of direction. I will also bring up the possibility of false-negatives with him. Unfortunately, I feel like if it's negative they aren't going to do much follow up on it here. From my research online there aren't any LLMDs here either so maybe I'll look into the herbal treatments that you mentioned Jinna, or maybe the doctor will be able to point me down some other avenue to look for answers.

Thanks I was looking for something like that before. I got 41 on the Horowitz test.

A month should give you some indication that it is lyme disease - by the increase in symptoms (eg. fatigue) and then maybe some improvement, although that may be too soon since you were infected 10 months or so ago.

You will need much more than that one month, unfortunately.



Also - there aren't high false-positives - only false negatives.

Just an update in case someone ends up in a situation similar to mine. 5 days into antibiotics still skeptical that my issue is Lyme. I'd say overall I've gotten mildly worse.

If overall my symptoms were causing me 7/10 in discomfort I'd say since starting antibiotics I'm at about a 7.5/10 (maybe this is a sign they're working?). Day 2 was the worst (but today was pretty bad too) had the same amount of leg pain ,but a lot of fatigue and difficulty concentrating and a worsening of my imbalance. Though my stomach symptoms have improved substantially.

In case it was a herx I did some research and found that curcumin can help with herxing so I bought a supplement containing curcumin (don't know the dosage because the bottle is in Chinese so I can't read it :/ ). My energy levels increased a bit a few hours after taking this. Currently taking 2/day at the same time I take the antibiotics (I read that 3 times a day is best ,but this supplement contains vitamin B6 and vitamin E so I'm afraid of overdoing it on the vitamins (I also take a multivitamin).

I also am taking 2-3 probiotic supplements per day because I know the unpleasantness antibiotics can cause your GI system. I also got acupuncture for the first time ever(I'm skeptical about this as well, but read some posts by people here saying it was helpful so I figured why not. TCM is covered by insurance here so it was an inexpensive procedure to try.) My right knee felt the worst it ever had during all of this immediately following the procedure, but is almost back to it's "normal" amount of pain.

Also thanks again to everyone for your support!

Post Edited (c009j) : 8/21/2017 10:53:09 AM (GMT-6)