Why isn't there a doctor for this topic?

[Imajerk]

Hey! I was in a salt marsh Saturday evening and this past Monday morning around 10am, I felt something odd on my neck, pulled it off pretty easily, and it was a tick! I was in shock! I usually am so good at tick checks but Saturday it just wasn't on my mind. I did go to a park Sunday too but stayed on trails. Probably from salt marsh but Monday was in my neck on the left. Must have just started 'cause it was easy to pull out and totally flat, not engorged.
I have it in a vial. Brought it to my doctor. He said just starting me on Doxycycline based on the symposiums he went to would be "medically stupid" without true evidence, given the harsheness of the drugs.

But earlier treatment is better, right? Should probably get a second opinion from one of these LLMDs everyone here talks about.

Also considering sending tick for testing at a lab, but I hear results don't guarantee anything.

Friend from Connecticut said if the tick came out easy, it wasn't in very long. Also everything I read says it takes many hours ( I've read 12, 24, 36 hours), for the bacteria to be transmitted from the gut, and an unengorged tick has little chance of transmission. The one lousy things is that I did grab  it from the body, having not realized what it was at the time.

No rash but it hasn't been long. Left side of neck a bit sore in the muscle but very little, plus, I carry my shoulder bag on the left. Tired but I only had a few hours sleep last night anyway. No other symptoms yet.

I really hate the patient forums. Patients can be very well read but can also get carried away when they have a little knowledge, esp if they are suffering from the disease of topic. It's understandable. If I were diagnosed, I'D be that way too probably.   But I prefer doctors as they will be, hopefully, more objective and professional.

So, why is there not a doctor on this topic in the "Ask A Doctor" section?  

And, what is the time range of "early stage" lyme?  Every site talks about three stages but none say from how many days on each stage consists of.

I mean, what can happen in 30 days if I have Lyme? What are the odds of it not being rid of?

[Imajerk]

BTW, now I have no headache it seems. Everything seems totally fine.

[Imajerk]

7x HIV is ridiculous!!! And yes, I did consider that there could be other ticks not seen. Deer ticks are super small. I have had one mild headache. The tick that I know bit me is a dog tick. Believe it or not my veterinarian confirmed my ID.  Things that dog ticks carry are not nearly as common as lyme. If I had RMSF I would have been very symptomatic. Erlichiosis can be mild, and it's rare.

I could go back to my MD but I don't see him putting me on meds without evidence that I caught something, and for him, one non specific symptom isn't going to do it. Plus, different things need different drugs, as your example about the kid demonstrates.

I may send the tick for testing to CA this week. The tick wasn't even hard to remove, so it was not in me for long at all. Thankfully.

I hear you about doing your own research.  If you are sick, what else are you going to do?  We are just numbers to these doctors. My own doc said years ago "I got into medicine to help people, not fill out papers!"  But I know he is sometimes up against the wall too when it comes to insurance.

So, if these LLMDs don't take insurance, how the hell does anyone pay?

[22dreams]

Unfortunately, in general you will not find a LLMD who takes insurance. Insurance companies dictate to doctors their "standards" of treatment and even doctors who wish they could treat lyme more aggressively do not because insurance companies would pull them from their networks. Needlesstosay, insurance is a profit-driven industry.

There are doctors who treat outside of network because there is no choice if they truly want to try to improve if not save lives. They are accused of being charlatans and bilking ppl of money of course. You say you've read about the controversy so you know.
For me, the proof is in the pudding. More research is needed and not enough is being done.

If you want a tick tested, it's possible. The accuracy of those tests, just like any tests for lyme, is questionable. I don't know what state you're located in but someone may have that information. I have it for the state of Mass.

There are towns where 1/2 the people are touched by lyme disease, sure. The Hudson Valley is notorious & one place I would never live. But also there are city dwellers and others who go undiagnosed if not by the mere fact of their location but that the so-called classic (tell-tale) bull's eye rash is a rare occurrence or goes unnoticed, leading to neurological, cardiovascular issues, endocrine disruption...the list is exhaustive.

People who suffer from any disease often time wind up "seeing it everywhere".
With lyme, as patients out of necessity we have had to educate and advocate for ourselves so much that we do indeed wind up with a body of knowledge that you will not find with your average GP (at the very least). So, GPs can only be as good as they are informed and they are mostly informed with at the very least outdated information, if not biased, surrounding lyme and tick-borne diseases.

I sidewalk diagnosed, so to speak, or rather-- strongly suggested -- with two colleagues family members--that one had babesia and the other, lyme. The one w/babesia was being treated for lyme by his GP but going downhill fast. The GP was nonplussed and upset as she thought for sure it was lyme and kept treating him despite his worsening health. All symptoms pointed to babesia and I told my coworker what to expect and look for.

Another, her daughter's grades plummeted in school (100 average to 60), very scary. I suggested she investigate lyme esp. given exposure was highly likely. Later, she told her mother of a small "bump" on her head/neck that got bigger and fell off. the girl wasn't a complainer and didn't want to worry her mother. My colleague brought her to her pediatrician who proceeded to look for a rash "pattern" under the girl's hair. This was in southern NH. I told her to dump that Md and find another. and she did. Found a pediatrician with lyme herself, who treated her, and the girl's cognition was restored. Lucky her.

This is just me, in my very small world over the last few years, so you can multiply that by how many other lyme patients.....too many cases are missed by their doctors.

Anyway, if you find a tick, a round or two of doxycycline for most people (who aren't allergic) isn't harsh as your doctor has lead you to believe. People are put on years of Tetracycline for acne. It's important to take probiotics while taking abx though.

I'd be far more concerned if the tick had been engorged or if you are exhibiting symptoms--are you?

But, as my sister's former GP said to her once "the tick you find usually isn't the one that infected you". For me, I think it was multiple unknown exposures before the "known bite". For others, they get a different strain and/or co-infections that lands them in a wheelchair pretty much immediately not unlike RMSF.

Lyme is really that common. It's the fastest growing infectious disease in the U.S. growing at a rate of something like 7x that of HIV/AIDS.

[Imajerk]

First and foremost, I apologize if I insulted anyone.   Understand, I had bad experiences where I thought I might have something and on patient forum, everyone who already had it was convinced I was already ill, when it turned out I wasn't.

I understand the "if it happened to me it can happen to you" feeling, but it's not fun being scared by people prematurely.  So I've been reluctant about patient forums. However, you guys have done a lot of footwork and I am grateful that you are willing to share.
And naturally, lyme CAN happen to anyone. A friend of mine who used to weekend in Croton on the Hudson NY, said over half the locals they knew had it, no exxageration.
Clearly this IS serious.

I have not been diagnosed with anything. The tick that was on me barely got started. Was very easy to remove. I took it out with my fingers not knowing what it was on my neck that was sticking out. My co worker from Connecticut, who has had ticks in him often, and has caught nothing to date, said if it didn't give you trouble getting out and you got the head and mouth - which I did - then it wasn't in long enough to transmit lyme.

And that IS what every site seems to say.

Also, after whipping out the dissecting scope, it appears to be an male dog tick; American.  

@Kday, what state do you live in? and 1x 200K is two MILLION!!! They really think there is that many? I have to check their site again.  What is the estimate based upon?
Are there any "specialists" I should avoid?

I will say this..it is VERY hard to get prompt and complete help. I can't find anyone who can both identify AND give appropriate testing to this tick, like, ASAP.  If a person had Rocky Mountain Spotted Fever let's say, well, that's less common but it can kill, and kill faster than lyme. There's really no time for sending a tick to one place for ID, then another  to test it..as the woman at Stonybrook U told me, by that time you'd have symptoms anyway.

I read about how the medical community is split. I tried contacting an LLMD near NYC.
Three names keep coming up. One is "no longer taking new patients, " a second does not take my insurance, the third does not list my insurance but I am trying him anyway, but I had to leave a message on his voicemail as they are moving the office.

The guy had lots of nice online reviews; Leigner or something was his name? His machine message from him is long and you can fall asleep waiting to leave YOUR info, but I left it. Heard nothing yet.

[anonymous680]

"But I prefer doctors as they will be, hopefully, more objective and professional. "

The diagnosis, treatment, and definition of the disease is all controversial. Doctors (especially MD's) probably wouldn't want their names posted publicly as many have willingly risked and lost their license in many states. Many, if not most MD's think a large subset of Lyme patients are just "nuts" and have something else (or nothing at all), so that's probably another reason why you won't find doctors helping patients on forums. The general thought that MD's get from treatment guidelines is the disease is hard to get and easy to cure.

With over 200,000 cases of Lyme Disease in the U.S. last year (CDC claims there is about 10x more cases than reported), and figures doubling every other year or so, I think major change will come. Right now, in many states that don't have protection laws, and doctors that claim to be Lyme disease "specialists" are often put out of practice by state medical boards.

When I first got sick and diagnosed, I called regular infectious disease doctors. It isn't uncommon (at least in my state) to hear the words "We don't take Lyme patients". There was a doctor that would see me, but the office made it clear that the doctor is more likely to treat my symptoms rather than the disease itself.

I believe this disease is terribly misunderstood by the medical community in just about every way. If you have Lyme disease, I recommend reading the book "The Cure Unknown" by Pamela Weintraub for more information. I think it will help you understand the things that "just don't make sense".

Take care.

[Imajerk]

Cause I was just wondering if anyone knew why there weren't any doctors here.
Patients who have been in this group awhile may have already asked the same Q or found an answer.

I mean, there SHOULD be a doctor for this, don't you think? Don't Lyme patients deserve that?  I'm just a bit surprised there isn't one.

[JackieCalifornia]

You say:  "I really hate the patient forums.... I prefer doctors as they will be, hopefully, more objective and professional."  

Ummm, then ... why did you post here?  No MDs here.  

Good luck!