1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
Discuss the article on the Forums.

bit by a tick, suggestions welcome

Discussion in 'General Treatment' started by sarahg, Apr 22, 2010.

  1. sarahg

    sarahg Admin Assistant

    Messages:
    261
    Likes:
    3
    Pennsylvania
    Help! So I have myself a bullseye rash from a deer tick bite on my back. I went so far as to take a picture of the rash in case it goes away. Got the tick out, but one of its teeth remain. I am going to the doctor today (which should be great fun, because I still have not found a new primary care dr who will take my insurance, and the last time I talked to this one I screamed at him) I am allergic to penicillin, amoxicillin, bactrim, and 1 other antibiotic that I can't remember the name of, have had bad reactions to avelox and another drug in the same class as that.

    I started last night looking into cumanda and samento, as they were 2 possible treatments my specialist had earlier suggested ( I have had a few lyme tests that were inconclusive or had 1 band that was positive, I was actually about to get retested, I'll dig them out if anyone wants more info)
    But all the info I can find about these herbs circles back to the company manufacturing and selling them...so that's not a great source in my book at all.

    I am really open to being pointed in the right direction and open to advice about what to do or not do.

    I fully expect to be given an antibiotic, have a bad reaction or allergy to it, have to be watched by other people, and then to have this doctor tell me there is nothing wrong, I am crazy, take more of whatever drug it is.

    I have a history of very bad reactions to a lot of drugs. I had to take avelox for a sinus infection like 3 months ago, got so dizzy I couldn't stand, really bad heart palpitations, overwhelming nausea and all of my food opted to exit my body at once. So I called my doctor to tell him this and he cut me off after I listed like one side effect, laughed at me and told me I was imagining it. Hence the screaming at him...which did result in me being given an antibiotic I could handle. Prior to this I had an allergic reaction to bactrim last summer,(after getting an ear infection from HIS dirty office) my throat closed up, I had to be babysat my my grandmother and aunt to make sure I was still breathing, and I called him and he told me to take another one and see what happened. I am sooooooo done with this doctor. I've literally called about 12 other offices and they are all up to their "quota" for medicaid patients...its starting to seem like it's this guy or a nonprofit clinic. I am very backed into a corner right now.


    Ok I just got off the phone with a nurse at the specialists office and they said to make sure to call and run whatever the primary gives me by them first to make sure it's safe. But seriously, any suggestions or info would be greatly appreciated. Thank you.
     
  2. Kati

    Kati Patient in training

    Messages:
    2,115
    Likes:
    1,746
    So sorry saraG. That's terrible!

    I wonder if you kept the tick for lab analysis?

    You likely need a course of antibiotics, and I would suggest you get different opinions including a pharmacist. Doctors and pharmacists have drug books that tells them what to do in case you're allergic to one antibiotics.

    You could try phoning one of the lyme labs like Igenex or a lyme litterate doctor.

    In BC Canada we have this kind retired specialist that gives free phone consultation, his name is Dr Murakami, can't find his site at the moment but here is a bunch of links from canlyme:

    http://www.canlyme.com/links.html

    Good luck and tell us how it's going :ashamed::hug::ashamed:
     
  3. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    15
    Im so sorry!! That is something you just do not need.

    This file about treatment suggestions is made by one of the best lyme Dr's http://www.ilads.org/files/burrascano_0905.pdf
    Maybe it helps.
    I think the first thing you need to do is to get yourself to a lyme literate dr asap. You can get a referral for a dr in your area from http://www.chroniclymedisease.com/llmd-referrals
    Note: there are some studies that have used highpressure hyperbaric oxygen chambers to treat antibiotic resistant lyme. That is something worth to look into if you prefer to avoid meds (althogh you may still need to take them)
    It is really good though that you noticed the rash and can start treatment this early!!
     
  4. herbqueen

    herbqueen

    Messages:
    45
    Likes:
    0
    you didn't mention doxycycline -the normal abx used to treat lyme-get on this right away/ASAP assuming your are not allergic to it.
     
  5. Lesley

    Lesley Senior Member

    Messages:
    188
    Likes:
    0
    Southeastern US
    Sarah, My new doctor suspects that I have Lyme, so I have been doing a lot of reading while awaiting test results. One thing I recall seeing is that the length of antibiotic treatment prescribed for acute Lyme is usually insufficient. I would recommend this website: http://www.ilads.org/
     
  6. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
    Get the tick tested if you still have it. That would give you peace of mind it it doesn't have lyme, and tell you you really need to go ahead with treatment it it does. I think the lyme site posted above has info on how to get the tick tested. Ticks can have other bacteria, spirochetes, etc, as well as lyme.

    What about the antibiotic that you tolerated before? You didn't say what it was...is it effective against lyme?

    If the tick has lyme, or you don't have the tick and you develop symptoms of lyme infection, consider the Marshall Protocol. It uses another drug that protects organs from herx reactions, which might a part of your previous antibiotic reactions, and it uses small doses of pulsed antibiotics which have worked for SOME people with lyme who were also antibiotic sensitive.

    Also consider trying low dose naltrexone....LDN. It is an immune modulator that is helping some PWCs with immune issues and much more.

    Breathe deep...accept some hugs from all of us...good luck at the docs...keep us posted.
     
  7. valia

    valia Senior Member

    Messages:
    207
    Likes:
    1
    UK
    I'm sorry to hear you have been bitten, but at least you have found it early and hopefully there is some abx that you can tolerate.

    The bulls-eye rash is conclusive of Lyme, even the cdc accepts that, so no tests should be necessary, unless for co-infections.


    Best wishes
     
  8. Min

    Min Senior Member

    Messages:
    1,303
    Likes:
    1,612
    UK
    You are right to be concerned, and to take immediate action, & I do hope you will be OK - can you tolerate Doxycycline? It seems to be the one that's usually offered and early intervention is important . My advice if you can't would be start yurself on herbs (quite frankly I'd start them anyway) & to go to a Lyme forum such as the one at MD Junction and ask about Lyme literate doctors in your country.

    I have Lyme, cryptostrongylus pulmoni and miccrococci on the red blood cells (possibly from the same long ago tick bite) diagnosed from live blood microscopy, could not tolerate the cyst busting cycle of the antibiotics and take the following instead, which has greately reduced the number of 'wrigglies' found in my blood (although Lyme can live in places like eyeballs, gum margins, joints etc);

    1 teaspoons cats claw tincture in water 3 times daily (started on Samento but found this just as good) - I was alternating this with Cumanda every 10 days but because of the price I am about to switch to sarsaparilla tincture

    1 tsp coconut oil 3 times daily with meals (again I started with Lauricidin tablets but switched because of the price

    also the African herbs filisa and simba but I'm not sure they are actually doing anything



    also avoiding sugar and simple carbs will help, as the spirochaetes apparently love them

    viruses can also live in bacteria from tick bites
     
  9. sarahg

    sarahg Admin Assistant

    Messages:
    261
    Likes:
    3
    Pennsylvania
    You're all so sweet. (and very prompt) Just wanted to drop in quick before the Dr. app. I saved the tick, but it is doused in rubbing alcohol so hopefully they can still test it.

    I can tolerate zithromax. I think doxycycline is in a class of abx that I am allergic to others in that class, but I am not certain. So we will see. I am fully prepared for this appointment to be a disaster and I am taking my mom with me so she can back me up. I've also made the decision that if it really doesn't go well I'll pay out of pocket to see another dr.

    I've just done LDN on and off at varied doses for about 2 months, and stopped a few weeks ago due to crazy uptick in mcs symptoms that I am pretty sure came from the LDN. Weird, as I haven't heard of anyone having the same problem with LDN. I'm going to see if I can get my specialist to approve one more immune globulin injection before I take a break just to make sure I am better equipped to fight off whatever pathogens I just gave myself. Not sure if he will go for it or if it even makes sense.

    So far, I have a headache and my lymph nodes are really sore. But this could be because I am taking a month and a half break from immune globulin injections and it's causing some symptoms to return as it gets out of my system. The only solidly suspicious things is that the hip joint below where I got bit (on my lower back) is in so much pain I can hardly put weight on it. And the rash, but I guess that can happen even without lyme present.

    I was about to go and redo all the igenex tests for lyme and those other tick infections...anybody know if that stuff will show up immediately or should I put it off for a few weeks to give it time to show up?
     
  10. Kati

    Kati Patient in training

    Messages:
    2,115
    Likes:
    1,746
    SArah, Igenex could be the best place to call, and also the best place to ship the tick. Give them a call. This is the best scenario is you were to have Lyme, which means you got the tick, you got the bull's eye rash. Taken early, during the acute phase you have the best chance of recovery. Phone Igenex!
     
  11. sarahg

    sarahg Admin Assistant

    Messages:
    261
    Likes:
    3
    Pennsylvania
    Min- I've been meaning to get myself some coconut oil (um, I was going to put it in my hair...but I guess now I will also be eating it)

    Ok so for the update, doctors appointment went surprisingly well, the doctor was in a good mood and aside from our usual intellectual spar over CFS + exercise (he just HAD to slip that into a 10 minute appointment) it went very smoothly. I was his 4'th tick bite appointment of the day. So yes, due to the rash alone I do have lyme. Doxycycline turned out to be in a class of antibiotics they were saving for if I had serious emergencies, and this counted, I guess, as a serious emergency. So I am supposed to do 100 mg twice a day for 3 weeks, as long as I don't develop an allergy. I triple checked with the pharmacist and my specialist and they all said to just try it- have only taken one so far, but so far so good.

    I guess the place they usually send ticks to to be tested got super crazy about how they want them sent and are refusing to test most of what the office is sending, mine would be disqualified for being doused in alcohol. I'm saving it just in case it needs to be tested later. The doctor was glad I took a picture of the rash when it was worse last night. (Try taking a photo of your own back and have it not be blurry, I dare you! I probably took about 15 pictures before it worked)

    I'm looking into different herbs and stuff, but this effort has been severely hampered by the fact that my doctors office is so filled with mold it fries my brain for quite some time afterward, even though I threw all my clothes in the wash and showered as soon as I got home. But it really seems like doxycycline alone may not be enough, so I am going to keep learning, I appreciate the suggestions thus far and could always use more.

    I'm pretty calm about it now and have accepted this will either be the best or the worst thing to happen to me illness-wise. Obiviously if I didn't already have lyme then it really sucks that I have just done this to myself because I was too careless to tuck in my shirt in the woods, and lazy enough that I didn't bother changing my shirt for 2 days. But on the other hand, if I already had lyme or lyme coinfections that were not being treated, I have just been pushed into treating something that may have always been a big part of the problem...either the abx or herbs or whatever else I find could really end up being a huge breakthrough health-wise, and I could wind up a lot better for having been bitten by that mean little tick.
     
  12. alice1

    alice1 Senior Member

    Messages:
    457
    Likes:
    0
    Toronto
    sarahg i'm so sorry you have to go through this.
    but having seen it so soon after the bite is good for a proper diagnoses.
    good luck!!
     
  13. jeffrez

    jeffrez Senior Member

    Messages:
    1,108
    Likes:
    644
    NY
    I had Lyme with the bulls-eye rash. The most important thing imo is to treat it ASAP and for long enough to ensure you have eradicated it. Maybe it's not possible to fully eradicate, I don't know, but doxycycline seemed to be effective for me, and I even had a fever and could hardly walk from the bullseye on my leg. valia is right that the rash itself is diagnostic. It wouldn't hurt to do blood tests also, but don't wait around for the results thinking you might not have it. If you have the rash, you have it and you need to treat it ASAP.

    No need to panic yet, though. Aside from the initial fever and rash, I can't say that I ever noticed any worsened symptoms from the Lyme, and I attribute that to prompt initial treatment. One of my doctors thinks it might have reactivated and wants me tested again, which after five or six years I'll probably do, but as far as noticing anything dramatic I can't say, unless it helped trigger hashimoto's. Btw, I also have severe sulfur allergies and am intolerant to a host of antibiotics, but the doxy was no problem. Herbs can be useful, but with lyme I wouldn't mess around and would definitely hit it with antibiotics.

    On something else you mentioned, I also seem to have noticed an uptick (no pun) in MCS lately, and I had also been thinking it might be due to LDN. So I just wanted to mention that. Good luck - hopefully with some aggressive treatment you won't even notice anything from it long term.
     
  14. Min

    Min Senior Member

    Messages:
    1,303
    Likes:
    1,612
    UK
    glad you are receiving help

    I seem to remember being advised on a Lyme forum to eat a little food just before taking the Doxycycline to avoid the nausea.
     
  15. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,113
    Likes:
    960
    Concord, NH
    How to Remove a Tick and Get it Tested for Lyme Disease
    by Greg Lee / Two Frogs Healing Center
    Click here for a full color version:

    http://twofrogscenter.com/tick_removal_testing.html



    "Uh oh," I thought as I discovered a small embedded tick on my daughter's head. My second thought was, "Did it just give her Lyme disease?" Here is what you can do when you find an attached tick.

    How long does it take for a tick to transmit Lyme disease to a person?
    Deer tick nymphs can be as small as a poppy seed or a little larger than the size of this period ".". The adults can be about the size of a sunflower seed or about the size of the letter "o". The tick on my daughter was an adult deer tick.

    Some experts say that it needs to be attached 24 hours or longer to transmit the bacteria. Others say that you can get infected as soon as the tick bites you. The truth is that no one knows for sure how long a tick has to be attached to infect you. Also, only 50% of people who get infected ever develop a bulls eye rash. My daughter had a raised bump where the tick was attached and did not develop a rash. The first thing we did was to get the tick out.

    Recommendations for removing embedded ticks
    Using a pair of pointed tweezers, gently grasp the tick where it is connected to the skin. Gently and slowly pull the tick out of the skin using firm and steady pressure.

    DOs and DONTs for removing ticks
    AVOID squeezing the tick too hard.
    DO NOT place vaseline on the tick.
    DO NOT place a burned match head on the tick.
    DO NOT put alcohol on the tick.

    By using only gentle force to pull out the tick, you minimize the chance of any of the tick's contents from being squirted into you. Place the tick in two small ziploc bags if it is still alive. You can also use a small tightly sealed container. This will prevent the tick from escaping while you are mailing it for testing.

    DO NOT place anything on the tick:

    NO antiseptics
    NO pesticides
    NO preservatives like alcohol on the tick.
    DO NOT place the tick on tape to immobilize it.

    These can interfere with the process of testing the tick for Lyme disease. Use an anti-bacterial cleanser on the area where you removed the tick and on your hands. Here's where you can send a tick to get it tested.

    Labs can test your tick for Lyme disease and other infections
    There are several labs that will test your tick for the presence of genetic material of the Lyme bacteria. You do not need your doctor's permission to test the tick. Unfortunately, tick can carry
    up to 60 other diseases. We decided to get the tick tested for these infections: Lyme disease, Babesia, and Bartonella.

    I took the tick to be tested at Clongen Labs in Germantown , MD. The head of the lab, Dr. Kilani, said that 30% of the ticks tests are positive for Lyme and other co-infections in the springtime. This number increases later in the summer where up to 60% - 70% of the ticks test positive. The test results are sent via email in 1-5 business days. Here is where you can download the instructions and a form for submitting your tick:

    http://www.clongen.com/

    We waited anxiously over the next few days for the test results to come back over email. Meanwhile, we took preventative measures to stop a possible infection.

    Preventative Treatments for Lyme Disease
    We contacted our pediatrician and told her that we found an attached tick. We also told her that we would forward the results of the Clongen tick test to her office. We asked her about giving my daughter a Lyme test. The Western Blot is the most accurate one available. However with an early infection, your immune system may not have produced enough antibodies to give you a positive Lyme test. We decided to wait for the Clongen tick test results before proceeding with a Western Blot blood test for Lyme.



    We asked our pediatrician about preventative medications to stop a potential Lyme disease infection. She recommended a homeopathic remedy called Lyme disease Nosodes. She was also willing to prescribe an antibiotic depending upon the Clongen test results. Given that we had a few days to wait for the test results, we gave my daughter alternative treatments for preventing a Lyme infection.

    Alternative Treatments for Lyme Disease
    If you want to strengthen your immune system against infection, there are several anti-bacterial herbs that are available.

    Raw garlic is a Chinese folk remedy to protect against infection and parasites. You can take 3-5 toes of raw garlic with food to boost your immune system. Adults have an easier time with this remedy. There was no way to get my daughter to take raw garlic. Fortunately, we had other anti-Lyme remedies.

    Anti-Lyme herbs can help prevent an infection
    Luckily, we had several of these herbs already in capsules:

    Forsythia, Chinese name Lian Qiao
    Japanese Honeysuckle Vine, Chinese name Ren Dong Teng
    Artemisia, Chinese name Qing Hao
    Smilax, Chinese name Tu Fu Ling
    Andrographis, Chinese name Chuan Xin Lian
    Teasel Root, Chinese name Xu Duan
    Houttuynia, Chinese name Yu Xing Cao
    Polygonum Cuspidati, Chinese name Hu Zhang
    With some convincing, she took several doses of these herbs before we got the test results back. We felt relieved about giving her herbal medicines that could help stop a possible infection. These herbs are readily available from a practitioner trained in Chinese herbal medicine. We got the tick test results back quickly.



    The tick test results came back in two days
    Much to our relief, the tick tested negative for Lyme disease, Babesia, and Bartonella. Much to my daughter's relief, she didn't need to take any more herb capsules. By knowing the proper procedures for removing ticks, testing them, and preventative treatments helped to reduce our worries about a Lyme disease infection.

    Many thanks to Dr. Kilani of Clongen Labs for his tick testing services and sharing his time and expertise on Lyme disease.



    - Greg



    ===============================================
    Getting Rid of Lyme Disease Pain, Fatigue, and Mental Fog
    An evening lecture by Greg Lee
    co-founder of the Two Frogs Healing Center
    Monday May 3rd, 6:00 pm - 8:30 pm
     
  16. Rrrr

    Rrrr Senior Member

    Messages:
    1,402
    Likes:
    271
    very strong peppermint tea (two tea bags in one cup of hot water) helped me with nausea from doxy.
     
  17. Rrrr

    Rrrr Senior Member

    Messages:
    1,402
    Likes:
    271
    for testing a tick for lyme and coinfections

    I'm so so sorry you have to deal with this. I suggest 4-6 wks of doxy, but I'll post about that in my next email.

    meanwhile, here is some info about testing your tick, tho it sounds like, from the bullseye rash, that you know it was a lyme infected tick. something to note, tho, is that lyme is not the only thing you can get from a tick. so you can also ask these labs if they will test for any of the co-infections, too, not just the lyme.

    April 2010
    University of Mass tick testing site:
    http://www.umass.edu/agland/diagnostics/tick/
    (i think i read on this site that you can send yr tick to them in any state, i.e. even in the state your tick is now in)

    Address packages to:
    UMass Extension Tick Assessment
    Agricultural Engineering Building, 250 Natural Resources Way
    University of Massachusetts, Amherst, MA 01003
    Use exact address to ensure delivery.
    For specific information, contact:
    Dr. Craig Hollingsworth, (413) 545-1055, chollingsworth@umext.umass.edu
    The test can detect the Lyme disease pathogen from a single tick. There is a fee of $40 per sample.
    Ticks can also be analyzed for the pathogens of babesiosis and anaplasmosis for a fee of $100. These tests are not conducted separately. The test for Lyme disease must also be ordered at the same time. Thus the test for Lyme disease, babesiosis and anaplasmosis costs $140.

    or, here is a diff tick testing lab

    April 2010
    Can send tick to
    >Please see our web site at: www.milfordhospital.org for complete
    >information and requisitions to order the new lyme testing.
    >
    >Thanks,
    >George
    >
    >George T. Poole, BS, MT(ASCP),MS, MPA
    >Lab Manager
    >Milford Hospital, Inc.
    >Milford Medical Laboratory, Inc.
    >Voice: (203) 876-4496
    >FAX: (203) 876-4548
     
  18. Rrrr

    Rrrr Senior Member

    Messages:
    1,402
    Likes:
    271
    what to do after a tick bite

    What to do immediately after a tick bite:

    Check out the Burrascano treatment guidelines at www.ilads.org

    But in general, my (past) lyme doc said to do this:

    "For a new bite, generally it's doxycycline, 300-600 mg per day (most use 400/day) for about four weeks past symptoms (so if you never show symptoms, take doxy for 4 weeks)."

    So, to be super safe, some are recommending at least 400 mg a day (200 mg x 2 doses) for 4 to 6 weeks.

    ALSO, there is now, just announced in April 2010, a new lab test that can test you for lyme NOW, right after a tick bite. In the past, you had to wait 3-4 weeks before you could take the lyme test and get an accurate answer.

    but now this lab changed all that (according to its press release). this is the info on the lab that just announced the new test on a person that can be taken right after a tick bite (this lab can also analyze your tick for you if you send it in):
    www.milfordhospital.org

    See above website for complete information and requisitions to order the new lyme testing called
    "Lyme DNA by PCR" -- This test is for early Lyme disease, from the period of 6-8 weeks after the tick bites the patient. The cost is $98. The only insurance to deny payment so far is Aetna. Medicare does cover it.

    This DNA test is available to people in any state, if we mail in our blood sample. Collect the blood specimen in EDTA (lavender top tube), wrap the tube in tissue paper and place in a zip-lock bag, and then put in a padded envelope.

    You can download the requisition from this web site at: www.milfordhospital.org

    for more info, contact:
    >>George T. Poole, BS, MT(ASCP),MS, MPA
    >>Lab Manager
    >>Milford Hospital, Inc.
    >>Milford Medical Laboratory, Inc.
    >>Voice: (203) 876-4496
    >>FAX: (203) 876-4548
     
  19. sarahg

    sarahg Admin Assistant

    Messages:
    261
    Likes:
    3
    Pennsylvania
    There are some of you I need to respond to and many I would like to thank, but my brain is getting burned out on CFSAC stuff. I have been looking through a lot of the resources that have been provided here and am still trying to make decisions as to what else I need to do. Its stupid, but I can only read so much and then I get freaked out and have to get my mind off it. I think I am doing ok with the abx, but I was a little itchy last night and I am hoping it was unrelated, only time will tell. I think I am having some neurological symptoms now. (nothing that I have never experienced before, but the upswing does seem to be related) One of my eyelids keeps twitching, as do the muscles around my left ribcage. I have had mild headaches on and off, which is strange as I usually get severe migraines...not mild little headaches. My joints are all very angry and achey, but that could well be the weather, it's probably both. And I have been having way more OI isssues than I have in a long time.

    I really sincerely appreciate all the direction you have all given me. Keep it coming, you've all been wonderful.

    oh yeah- the question I came on here to ask...I fear greatly that this, as with previous courses of antibiotics, will cause me to lose more weight that I cannot afford to lose. I've got decent probiotics, I've got home made Kombucha, I'm using both liberally, and eating a lot of ginger and garlic...is there anything else I can do to keep my digestion from going absolutely bonkers?
     
  20. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    15
    Hey Sarah. Good you are on Kombucha, it often contains S Boulardii a beneficial yeast. You can also buy this supplement at vitacost, the brand is Jarrow. The advantage of taking yeast is that it does not get killed by the antibiotics (as opposed to bacterial probiotics) and it prevents that pathogenic bacteria take over your system. At the time you are finished with the antibiotics i recommend lots of good quality probiotics, preferably human strain (look at progurt and culturelle) and good quality kefir. the s boulardii will slowly disappear if you do not replenish it and so the bacteria can take its place.
    As for weight gain, hmm. Good quality protein, e.g. chicken small meals spread over the day, maybe consider goat whey if you are cow milk intolerant. sweet potatoes, full fat kefir, hmm well good luck!!
     

See more popular forum discussions.

Share This Page