LYME question

Discussion in 'Fibromyalgia Main Forum' started by loto, Jul 13, 2010.

  1. loto

    loto Member

    I know I should post this Lyme question on the Lyme board, but I always get quicker responses on this board.

    I was bitten by another tick this past weekend, and have had a headache ever since. The spot where it was is also a little red bumb, no rash or anything, but it itches.
    I stopped by my doctor's office today to pick up a prescription, but also asked a nurse about my apparent tick-related concerns.
    She told me that anything I'd be suffering from caused by a tick bite wouldn't show up for many months. This isn't correct, is it?? Everything I've read about tick stuff didn't say that. It said it COULD take months for sypmtoms to show up, but not that EVERYTHING would take months. I wanted to tell her this, but I've had problems with this particular nurse in the past and just let it go. Needless to say, I cannot stand the lady!!!!! It took her a whole frickin month to call me to tell me my iron test showed that it was low!!! (I already knew it, but it took her that long to call me to tell me to take supplements again!!)

    Anyway, please tell me, anyone, if she is wrong.

  2. Misfit101

    Misfit101 New Member

    The nurse is wrong. True symptoms CAN show up months or even years later. Thats not always the case. Some ppl experience flu like symptoms a few days after being bitten. The faster one gets treatment the better. Time is of the essence. Id make a dr appt asap and discuss your concerns. Good luck...i wish you the best!
  3. Supermami

    Supermami New Member

    I have read that ticks remain attached to the host for 24 hours before beginning to feed. It is in the feeding that transmission takes place. It is one reason that tick checks should be done after hiking, clearing brush, etc. in areas with tick activity.
    Ticks should be removed in the proper way to ensure that you don't force its' bodily fluids (eewwww) into the bite.
  4. Nanie46

    Nanie46 Moderator

    I agree...lyme has many stages....symptoms can appear soon after a bite.

    If it is not treated promptly and aggressively, the infection then disseminates first and then becomes chronic. Other symptoms can show up with time.

    There are many lyme patients who will attest to that.

    Are you taking doxycycline 200 mg twice daily since your recent bite?

    That is what a LLMD would give you. They would treat you until after you are symptom free.

    You also need evaluated for coinfections like Babesia, Bartonella and Ehrlichia that ticks often carry also because doxy is not used to treat some of them.

    The nurse is very uninformed about are 99% of health care personnel.

    Read this....and you could print it out for her too....

    Also, stages described in Dr B's guidelines..pages 19-20...

    People generally become more sick with each infected tick bite. You really need to see a LLMD asap.

    Other Dr's will not take your bite seriously and will not treat you properly.

    Also, there are many people on lymenet who will attest to becoming ill when a tick was attached for only a very short time.[This Message was Edited on 07/13/2010]
  5. loto

    loto Member

    I didn't think she was correct. I've decided to wait and see what happens by this weekend. If my headache hasn't gone away, I'll ask to see my doctor as early as they can squeeze me in. My FM usually doesn't give me a headache like this that lasts for this many days. So, that's why I was concerned and asked that nurse. I really hate dealing with her. From now on, I'm going to request to speak with the other nurse that is in charge of "call ins".

    Thanks all! I hope this has nothing to do with lyme, but, maybe now i can get the sort of lyme tests and stuff that i really need to get.

  6. Nanie46

    Nanie46 Moderator

    Remember that lyme tests are very unreliable.

    Tests to detect antibodies aren't going to detect anything so soon if you have never been infected until now.

    It is possible that you already have chronic lyme and have been reinfected.

    Get a western blot IgG and IgM from Igenex lab in CA.

    Call or email customer service for a free test kit. Dr's order form is in the kit.

    You need test #188 and #189...cost about $200. They accept medicare.

    Get a copy of results from your Dr even if results say "negative" to compare your band results to info from LLMD's.

    But first you really need doxy 200 mg twice daily ...which your non-LLMD will never agree to.

    If you can convince him to give you some doxy, he will probably only give you 100 mg twice daily for a short time which can allow the infection to eventually spread.
  7. loto

    loto Member

    why are non-LLMD doctors so ill-educated on this?
    So frustrating. I've checked before and there are no LLMD doctors in my area.
    My head dully pounds as I type this.
  8. Nanie46

    Nanie46 Moderator

    The Infectious Disease Society of America (IDSA) is a large organization who refuses to acknowledge that chronic lyme exists or that long term antibiotic therapy is required.

    It is really about money and power. They will never admit that they are wrong.

    You can read about it here....

    Most people do not live near a LLMD and travel to see one. It is not the ideal situation, but necessary for recovery.

    [This Message was Edited on 07/13/2010]
  9. karynwolfe

    karynwolfe New Member

    Hi loto,

    Sorry to hear about your severe headache. I'm currently suffering with that at the moment, due to these very types of infections; I can sympathize.

    Lyme disease isn't the only thing you have to be concerned with from tick bites. Ticks can transmit viruses, parasites, and other bacterial infections, such as bartonellosis. Lyme CAN cause immediate symptoms, but the fact that you immediately experienced symptoms are signs of a co-infection rather than Lyme Disease, as Lyme most often has a gradual onset.

    So your nurse was actually a LITTLE BIT right, about that part.

    Another thing is (and maybe this is what she meant?) is that it does takes several months before the body produces antibodies against Lyme, so even if you have it now, it may not show up on tests until months later, IF it even shows up at all. Because of them trying to produce a vaccine for Lyme many years ago, the main strains of the bacteria that cause disease (and were thus worthy of being vaccinated against) aren't part of the usual Western Blot test, because it would have caused cross-contamination: Physicians would have been unable to tell if the exposure was from tick bite or vaccine. They never came out with the vaccine, but they still haven't added those most important strains back to the Western Blot test!!!

    But, like Nanie said, this may be RE-exposure, so I'd still see about getting a Western Blot in case something from the past could show up.

    The coinfections show up less than 50% of the time, even in people with the most obvious infection (like me). Please try to see a Lyme literate physician as soon as possible: this is not something to waste time on. Just ask any of us who are currently losing our daily battle because we didn't know about these infections...

    And if you have any more questions and want a REALLY quick reply (and access to a ton of previous threads with your similar concerns), visit

    Good luck,

  10. lea

    lea Member

    Post where you live and that you are looking for a llmd.

    Most llmd's do not take insurance. Knowing this though, the sooner you get treated, the better your chances for a better recovery.

  11. gapsych

    gapsych New Member

    It's not about not admitting they are wrong or power. The same could be said about ILADS.

    It's not about treatment options.

    There was no conflict of interest.

    It's about best medical practice and scientific evidence.

    That's why insurance companies will not pay.

    I just want to show the other side. People can then make a choice.


    ETA Loto you are right. This probably belongs on the Lyme board. That's why it's there.If people would go to the Lyme board in the first place, it would be busier. Some of the people come over here because they have an agenda.

    Wait, you have been on the lyme board for over a year. I have a feeling after reading your postings on the Lyme board, you already knew the answer to this question. Very creative.

    [This Message was Edited on 07/13/2010]
  12. richvank

    richvank New Member

    Hi loto.

    I urge you to pay attention to what nanie and Karyn wrote. They are right on. We went through the same thing with our primary care doctor when my son was bitten by a tick and got a bulls eye rash. He didn't "believe" in Lyme disease. Fortunately I knew what it was and took my son to an LLMD, who gave him the doxy for a few weeks, and that took care of it.

    Yesterday I was just contacted by another person whose wife had tick bites 7 and 9 years ago and was not treated for Lyme or coinfections. At this point she has joint, heart and neurological symptoms, and is very ill. I gave him the advice to see an LLMD and get an Igenex test.

    Over the past few years, I have had the experience many times of encountering people who had been carrying the diagnosis of CFS for years, and then found out that they actually had Lyme disease. Though people do recover from long-term Lyme disease, it's much easier to deal with it when it is only a few days old.

    So please do get on it!

  13. victoria

    victoria New Member

    are all so right. Hope you follow up on it, too. My son would never have gotten a Western Blot ordered by local physicians, because they don't believe it's in the area. Even today, even tho they know he was "CDC" positive 2X. There is a LOT of evidence based peer-reviewed scientific research that is just plain ignored.

    Lyme is definitely connected with CFIDS and FM and ME - it doesn't have to be the only dx just because one might have it, just 'another' one. Most of us do have more than one 'thing'... tho it sure would be easier if we could ONLY have just one 'thing'.

  14. loto

    loto Member

    I do know my primary doctor does believe in Lyme Disease, because a co-worker of mine's husband see's the same doctor, and he was tested and diagnosed with Lyme. And, he also has Fibromyalgia.
    So, even though my headache is better so far today, I still think it was a reaction to the tick bite. I've had ticks on me every summer for as long as I remember, so it's nothing new, and I remember not feeling "normal" (meaning my normal FM self!) after other bites, also.
    So, I will follow up on all this, it's obvious the tick bites affect me, whether it's an infection, or whatever else, and I'm going to tell my doctor this, and insist a test be done that will tell if I have coinfections or anything. (hopefully if I do, it will show up on the test.) He is usually good about ordering tests and stuff that I request. He admits that I know more about FM than he does, because I take the time to read about symptoms I have, and I find out a lot on this board--THANK YOU!!!!
    So, I'll see how it goes. I wish those of you with Lyme and other infections from these evil ticks the best. BTW, I think I read the other day from an article Nanie posted "When to suspect Lyme", that Lyme disease can also be spread by fleas? Oh man, that's not good. We've been fighting the fleas since spring on our indoor dogs. Seems like nothing will get rid of them.
  15. gapsych

    gapsych New Member

    Hi, I may not have been clear in my post. It is not a matter of whether you believe in Lyme disease it is rather the medical criteria and treatment of it where the IDSA and ILADS differ.

    I would not be surprised if either kind of doctor put you on an antibiotic regimen. Now how long you would stay on the antibiotic depends on whether the doctor is an Infectious Disease or LLMD doctor.

    I would run this by your doctor.

    Good luck.


    [This Message was Edited on 07/14/2010]
  16. Daisys

    Daisys Member

    It's too bad that you didn't get treated right away. Watch the red bump, and if it widens out to a bull's eye, that's the bugs swimming away from the site of entrance. That's 100% proof that you have been infected by the tick bite. If they swim straight in, you won't see a bull's eye. I never did notice one, but I certainly have Lyme disease.

    The best thing is to find a Lyme Literate doctor in your area (find a lyme site with private messaging, and someone will tell you if there's one near you).

    The best time to be treated is as soon as you're bitten, but yes, it is a relapsing/remitting disease, and for me, took years to get serious symptoms. But, some people get very sick right away.

    Did you get sick with the previous tick bite? Were you treated for it? If so, did you fully recover?

    I wonder if some ticks out there haven't gotten that full load of nasty infectious agents yet. And some people, like my husband, test positive for lyme infection, but have no symptoms. My husband is very healthy, so his immune system may be up to the challenge of keeping the infection in check.
  17. loto

    loto Member

    I never got really sick with previous tick bites, but do remember having a headache that lasted for days, and feeling more tired.

    Wow, that's crazy about how the bite gets---the bugs swimming like that???