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!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

bit by a tick, suggestions welcome

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

  1. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    Hi Sarah,

    I'm someone else who has taken a lot of Doxy to very good effect - I do not have, nor have had Lyme - and had no side effects from it aside from a slight upset if I forgot to eat with it. Doxycycline has been the single most important and useful drug I have taken. I have long thought that my bacterial infections have been blessings in disguise as they led to my understanding of the usefulness of doxycycline. Last year I undertook a course of pulsed Doxy which was helpful. Some symptoms which were very troublesome have not reappeared... yet.

    Finally, the three variables that coincided with my 85% remission of symptoms were: removal of ovaries and no HRT for 9 months, introduction of Xanax for sleep and long courses of antibiotics for a bizarre chronic bladder infection.

    So, who knows...

    I hope you have a similar experience. Could happen

    Eyes crossed!
  2. L'engle

    L'engle moderate ME

    Messages:
    951
    Likes:
    420
    Canada
    I had a phone consultation with Dr. Murakami. He was very kind, and I have heard of many people who were helped by him. Too bad there is such a 'political situation' regarding Lyme.
  3. Sue C

    Sue C Sue C

    Messages:
    33
    Likes:
    1
    NJ
    Hi Sarah,,,am so sorry to hear of your current crisis. Can tell in your posting that even though you are upset, you are trying to be objective. During years of counselling on how to deal with chronic illness, and other life's major changes, my therapist had a chart where we prioritized what had to be done in immediate time and then on from there. Of course the 'flight or flight reaction' kicks in and can linger. But so far, you have seen your doctor, have your mother's support and so many helpful friends here. Am same way that you said....can read so much, then have to stop take a deep breath and not think about it....take a mental health break. It is good to keep any kind of notebook to have a timeline of what you have done and who you have seen.then a short list of lyme contact sites and local support help if available. Others have walked this walk, so know that you are not alone. As for diet, if digestion difficulties, along with the probiotic info given, if you tolerate digestive enzymes...I take chewable when I eat anything...over years of dozens of labels, American Health super papaya enzyme Plus works for me (gut dysbiosis) It is not expensive and is easy on stomach. Will keep this short, but know that my prayers and healing vibes are being sent yo you.
    Sue C
  4. brenda

    brenda Senior Member

    Messages:
    1,258
    Likes:
    612
    UK
    Hi Sarah

    Unless you have already done so, I would get onto Lyme net flash for support as there are lots of Lymies doing anti-biotics there and are able to give advice they receive from LLD`s - Lyme literate doctors. The general advice is to take a high enough dose and for at LEAST four weeks. If you do not knock it out the first time then you will have troubles.

    http://www.developmentalspectrums.com/index.php?option=com_content&view=article&id=245

    http://www.lymeinfo.net/alt.html

    just a few links. I had it for 10 years before I knew it so too late for abx for me even if I could take medications but I am continuing to improve on my self help protocol but that has been from a long way down.

    I would also cut out all foods that cause strress on the body like sugar especially - I don`t know how healthy you are eating. Maybe cut out gluten and dairy too - but really hit it with everything you can in this first month or two. It really is worth it. Some folk have been on abx for years and still unable to kill it or go off then it comes back. You need as much education on this as you can get and asap. It is one nasty beast.

    Good luck
    Brenda
  5. sarahg

    sarahg Admin Assistant

    Messages:
    261
    Likes:
    3
    Pennsylvania
    Thanks so much everybody for all the kind thoughts and info, it has been really helpful. I have been doing a fair amount of research, but I'm still really indecisive about what to do next. I managed to get a (much sooner than planned) appointment with my specialist next week so we can work out a strategy beyond what I am already doing. My guess is that he will keep me on the doxycycline longer than the 3 week rx I now have, possibly increase the dose, and point me in the direction of herbs/supplements to complement it.

    For the first week and a half I was really just on the couch most of the day, pretty crashed. No symptoms I had never experienced before, but in a weird way it was kind of like getting sick all over again. Lots of headaches, muscle twitching, running into walls, crushing joint pain etc. etc. But at least for this acute infection, it seems as though the antibiotics are doing their dirty work, and I am pretty much back to my familiar "CFS" level of activity and discomfort. Hopefully it will stay at least that way...though my hopes for a miracle recovery overall via treating acute lyme disease have thus far been dashed.

    The really weird thing is...and this has never happened with ANY antibiotic that I have ever taken...my digestion has improved, not gotten catastrophically worse. Now I am taking decent probiotics (but I already was doing this) and I am drinking a fair amount of home made kombucha (dabbling in HCL and digestive enzymes...but they are not kind to me) But I do this every time I go on antibiotics...I can't see why it would be different. ( By the way -Leaves, it is really interesting to learn there is often S. Boulardi in kombucha- my previous doctor insisted that I take the metagenics supplement of that strain in addition to other probiotics after having to clear my digestive tract for abdominal surgery) Anyway, so all I can figure is that perhaps at some point I contracted some bacterial imbalance or infection in my digestive tract that has now been knocked out by the antibiotics. Its weird. The last thing I ever expected this incident would fix was my digestive system.

    I am not eating wheat, cut down on dairy and cut down on sugar. I usually try to do this when on antibiotics because otherwise it is a disaster. I made (with help) a huge batch of the most fantastic blini I think I have ever made, and that has gone a long way towards my effectively behaving myself and not touching wheat at all. But they are almost gone, and I am about to be between kombucha batches, so we shall see what happens next.
  6. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    15
    Ha Sarah!
    Good to hear from you. I was wondering how you were. Seems like you are on top of things and taking very good care of yourself. Good job!!
  7. sarahg

    sarahg Admin Assistant

    Messages:
    261
    Likes:
    3
    Pennsylvania
    So I just wrote a novel of a reply and then my power went out! We shall see if I have the energy and brain to recreate it.

    I had an appointment with my specialist on wednesday, but it took until now for me to be able to update this. I've been a bit out of it. Maybe I will be more to the point on this, my second try. He is treating this on the assumption that I already had a chronic untreated lyme infection. Previous igenex tests have been inconclusive with one band positive, babesia tests also mildy positive or inconclusive. I was actually about to get retested when that nasty little tick made the testing a non-issue. Doctor still wants me retested for lyme coinfections in a few weeks though.

    The plan is for me to continue with the doxycycline for a very long time if possible (which means gobs of sunscreen, hats and longsleeves all damn summer...due to sun sensitivity from it) And to also add cefuroxime (ceftin) but there is a high probability I will be allergic to this, so I am waiting until a weekday to start it, and I will be fully supervised just in case. The pharmacist was quite concerned about what my reaction might be, so my hopes are not high and as long as I don't end up in the emergency room I'll be happy. Has anyone used it? I'd like to hear others experiences with it.

    In the event I am allergic, and I probably am, I guess the backup will be some type of mycin antibiotic, which I am generally safe with.

    So he wants me to use the doxycycline and the ceftin for 3 week intervals, followed by a week off during which time I will take metronidazole (something to do with the possibility of babesia) and continue on this alternating schedule.

    On top of this I also have bottles of samento and cumanda extracts which I am supposed to take together once I am sure the abx situation is safe. I am to start with one drop each in water and work up. I have read of people alternating between these two but not taking them together, but I could be remembering that wrong. I would be really curious to hear of anyone's experience with either of these herbs.

    I have been drinking a fair ammount of milk thistle tea to try and reduce the burden all these substances are going to put on my body (in fact I am drinking it right now) But what I am not prepared for is any kind of detox-y reaction I am going to have to deal with if there really is long standing lyme crap that is going to be dying off. My doctor's initial suggestion was more vitamin c and more fluids, but I'm already well hydrated and I can hardly tolerate vitamin c. (these are the kinds of things I don't think of til I am in the car on the ride home, though!) So this is on area where I could really use some suggestions and guidance.

    Thanks to everybody for being so patient with me. Normally I would not need so much help, but without the immune globulin, my cognitive function is going downhill rapidly. I really appreciate all the guidance so far, and any that is about to appear.
  8. sarahg

    sarahg Admin Assistant

    Messages:
    261
    Likes:
    3
    Pennsylvania
    I forgot to mention that one thing the doctor suggested if I end up with nasty detox reactions is burbur, from the same company as the samento and cumanda. I would be very curious if anyone has experiences with this. I remain uncomfortable that I really haven't been able to find much info about any of them outside of reports and info that cicle back to the company that is making and selling them.
  9. Seeker

    Seeker

    Messages:
    18
    Likes:
    0
    DE
    Hi Sarah - I'm also someone w/chronic Lyme (plus both kinds of ehrlichiosis, bartonella, and babesiosis - took testing for that 3 times before got a positive - and viral reactivations of EBV & CMV). I pulse green tea and artemisia annua (whole herb) for the babesiosis (tho yrs ago, I did a few rounds of Mepron/Zithromax for it). There was an article recently published on green tea being effective for b.microti: http://www.ncbi.nlm.nih.gov/pubmed/20025823

    Since I can no longer take abx (I did, tho, for a long time & had a 4-yr remission of symptoms), I've done alternatives such as LDN, and condensed Cowden. So I have taken the burbur - can't say as it did much for me, but everyone's experience is different. I think I preferred the pinella (brain/nerve cleanse) & parsley over the burbur.

    I like putting fresh lemon in my drinking water (for liver detox), and for more serious (painful) Herxes, do epsom salts & baking soda baths more often (usually only do 1/wk).

    I have found that Nattozymes will help to penetrate the biofilms, but I can't tolerate the increased symptoms after doing that w/out using EpiCor (similar to the Kombucha in that it is a form of saccharomyces).

    When I was on abx, if my Herx was too strong, I would back off or back down the dose in order to tolerate the Herx (tho my 1st LL doc did not suggest doing that).

    Sounds like you're in good hands - good luck! :)
  10. jeffrez

    jeffrez Senior Member

    Messages:
    1,108
    Likes:
    638
    NY
    What is it about vit. C that you don't tolerate, do you know? Is it a specific kind that gives you trouble, like calcium ascorbate vs. some other formulation? Is it some stomach upset or something digestive that might be alleviated by an ester-C? Are you maybe insensitive or allergic to some of the fillers, or to bioflavonoids? I notice a slight allergy to bioflavonoid, and take a non-bf ester-c that seems to be very tolerable. I think there are probably also C powders out there without any fillers that might be worth trying if you haven't already.

    I had never heard of burbur, but apparently it's a mild detoxing and antioxidant herb. There are some studies on medline if you search for "Desmodium."

    GL with the antibiotic. I don't know if by supervised you meant you would be medically supervised in your doctor's office, ER, etc. or just have someone with you at home, but if the latter, I would be sure to have plenty of benadryl readily accessible, maybe an epi-pen, or some ephedra on hand if you happen to have any. If I wanted to be really cautious, I might even have someone drive me to the ER, bringing benadryl with me too, and then just stay in the car and take the AB in the parking lot. That way if you have a reaction you are right there and can go right in. They would probably just pump you full of benadryl anyway, but at least you are at a facility where they would have other options on hand if they were needed.
  11. sarahg

    sarahg Admin Assistant

    Messages:
    261
    Likes:
    3
    Pennsylvania
    Seeker- Thanks, I am going to look into some of those things. I just gave up on LDN right before this whole tick thing happened because it seemed to be making my MCS issues go out of control. Especially interesting about the green tea. As far as the herxing, I usually just grin and bear it with stuff like immune globulin or antivirals (most of which I am allergic to) , but I have this weird feeling that this is going to have to be a "supported" herx in some way. It's weird. So thanks for the suggestions.

    Mr. Kite- The vitamin C thing- I never had a problem with it until I twice got a very high dose ( we're talking like 10 grams I think) in an Iv along with other stuff and had a terrible reaction to it. The first time was on purpose, the second because some idiot didn't read my chart right. Anyway, it gives me an unbearable headache, makes my whole body shake and tremble, makes me really nauseaus and dizzy, and the contents of my digestive system rapidly evacuate the premises, and just stop digesting food. I can't stand barely, and just curl up in a ball and whine. This lasted about 3 days after each incident. both times I was still living alone and had to go elsewhere to be "babysat". Since then, I can no longer handle even a small dose of vitamin c in IV's- it produces a milder version of the same symptoms, which it never did before that. I have 1 gram vitamin C tablets that I used to be fine with, and now if I even break them in half they make me woozy and mildly shaky. I figure that eventually this will probably improve with time. Interesting about the bioflavinoid allergy idea, that's how my supplements are, but not how the Ivs are. Hmm. The powder is a good idea cause then I could really tweak the dose to be quite small and build up.

    Yeah, I have a stock of dye free benadryl at the request of the pharmacist, and going to spend the day with my aunt who has an epi pen and a car. The pharmacist was emphatic that I could have a reaction after I've been taking it a while, and I'm kind of starting to feel like I either might postpone starting it a few days (my social security appeal is tuesday and I am stressed enough about that) or I might chicken out and just beg for a mycin type antibiotic. I keep replaying the worried pharmacists voice in my head which is soooo not helping!
  12. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    1,412
    Likes:
    1,248
    You are near me and I have a good doctor for you named Dr. Kracht in Quakertown. Anyone in his office will see you and he specializes in CFS but also treats lyme. Zithromax is a good drug for lyme tics. Also, doxy. I too am allergic to many drugs. You can PM me with any questions. I hope you got some answers. His phone number...the doc's is 1-215-536-1890.
  13. jeffrez

    jeffrez Senior Member

    Messages:
    1,108
    Likes:
    638
    NY
    Wow sarahg - that is an interesting and very unusual response to Vit. C - it sounds completely awful! I can't imagine what about vit. C in itself would cause such a wide constellation of symptoms. It almost seems like some kind of excitatory neurotoxicity reaction, or perhaps it's immunological, both of which seem like they could cause those kinds of symptoms. A straight up allergic response seems like it would be different from what you described, but perhaps it's a different kind of immune sensitivity. All the wooziness and shakiness also sounds hypoglycemic-ish, which in a lot if not most cases is neurobiological in origin.

    Anyway - at least now you know to avoid it. ;) Have you experimented with foods that are higher in C than others might be - certain fruits, vegetables, etc. to see if those provoke any kind of reaction, or minor reaction? Sometimes I've noticed that things that aren't tolerated in supplement form are handled fine when they're coming from food. Anyway, just curious - I sometimes feel like the only one who has extreme reactions like that. Everyone tends to think it's crazy, but a reaction is a reaction.

    Personally I would definitely wait on starting anything new until any court hearing was over, especially a SS case. That kind of thing is stressful and demanding enough without complicating things with a possible allergic reaction. Maybe it would also be possible to treat the Lyme successfully with abx you are known to be okay with, rather than risking a possible allergic reaction to a different class. You could always try something like that later if the first ones didn't work. But that is just my decidedly *non-medical* opinion, of course definitely take the advice of your doctor who knows the details of your case over just casual internet comments/impressions, etc.

    good luck
  14. Seeker

    Seeker

    Messages:
    18
    Likes:
    0
    DE
    Sarah - I hope you're able to tolerate the doxy since it works on some of the coinfections that other abx like amoxicillin may not.

    Did you know that there is a Salt/C protocol for Lyme? I've never tried it; am just mentioning because of your reaction to Vit C.
  15. sarahg

    sarahg Admin Assistant

    Messages:
    261
    Likes:
    3
    Pennsylvania
    Yeah, the vitamin C thing is definitely weird. I almost wonder if it is more a reaction to something that a high dose of vitamin c would release (like dying viruses or bacteria, a heavy metal, etc.) and for some reason I am now reacting to whatever that is with really small doses as well. I haven't reacted in a similar way to anything else that I can think of. As far as foods go, they don't seem to bother me, but a lot of high vitamin c foods are rather acidic, so I avoid them for other reasons. Kale and potatoes are both high in C though, and don't seem to bother me at all.

    I'm still so frazzled from the whole social security thing (which actually went well, I think, won't know for sure for a while) that I haven't started the 2'nd antibiotic yet. Just not ready to deal with the allergy potential to that. Will probably start friday or monday depending on when I can have somebody "watch" me. I'm still doing well with the doxycycline, and that alone is so surprising that I can hardly complain.
  16. Min

    Min Senior Member

    Messages:
    1,183
    Likes:
    1,178
    UK
    When I took Samento and Cumanda I was advised to alternate them ten days each, to stop my body becoming accustomed to them - don't know if this advice has any scientific basis.
  17. Rrrr

    Rrrr Senior Member

    Messages:
    1,397
    Likes:
    263
    i am sorry to say that i have not been able to keep up with this thread. but i do wish you the BEST of luck with all this. and i want to post this link to a doctor's blog (she is xmrv+) http://treatingxmrv.blogspot.com/2010/05/thoughts-about-chronic-lyme-disease.html on her own lyme treatment and thoughts. in short, i think she is saying not saying that short term antibiotics treatment for lyme is not helpful right after a tick bite -- and it can even be helpful even much later, to see if antibiotics help the lyme case. but that if the antibioics are not found helpful after xx number of months, and the CFS (or fatigued illness) person does not do better on antibiotics, it is a mistake to keep taking them long term. they can do some damage with long term use. i, myself, had cfs for 15 yrs before i got a lyme diagnosis. then i got the diagnosis (tested positive on two separately administered igenex tests), and started antibiotics treatment with one of the best lyme doctors in the country. after 8 months of trying lots of antibiotics without a "herx" or feeling any better, just more worn out, i decided to stop the antibiotics. i just felt that long term antibiotics was too scary and hard on my body. i may have felt differently about herbs, like samento and cumanda. and may some day try them.

    warmly,
    rrrr
  18. Seeker

    Seeker

    Messages:
    18
    Likes:
    0
    DE
    Sarah - Really excellent that you've been able to tolerate the doxy; also good that you're trusting your instinct about starting a 2nd abx.

    Rrrr - I really feel that many LL docs are just plain missing the boat when it comes to viruses, but even the rx antivirals can be rough on liver, etc. Still, I'm glad I was rx'd them - worked on repair after beating back the infections :)

    Min - That's interesting; when I did condensed Cowden, the samento & cumanda were never taken during the same portion of the protocol; eg, I'd be on samento (w/other Nutramedix drops) for 30 days, then eventually the cumanda replaced the samento in the protocol. So in general, alternating them sounds like what's recommended - just duration before alternating seems to be longer w/the protocol I was given.
  19. sarahg

    sarahg Admin Assistant

    Messages:
    261
    Likes:
    3
    Pennsylvania
    Hey Rrrr thanks for that article, it was interesting.

    I took one ceftin, got a minor rash with the first pill and called it quits. Have to call tomorrow to get the next RX.

    I didn't want to jinx it by saying anything, but whatever, I haven't had any muscle twitching for like 3 days, which I take to be a very good sign. My joints and my brain are still worse than usual, still more crashy. (god! why does spell check insist that's not a word. I really think crashy should be a word. It's descriptive and amusing)

See more popular forum discussions.

Share This Page