Suggestions for New Lyme Infection

Discussion in 'Lyme Disease Archives' started by Slayadragon, Oct 21, 2008.

  1. Slayadragon

    Slayadragon New Member

    I have just "come down" with what seems like a new lyme infection and would love some advice!

    I spent a lot of time outside Michigan, in the backyard of someone who I later found actually has deer on the property. (Yes, stupid.)

    A few days later, I found a scabby type sore on the back of my shoulders, where I rarely look or touch. I don't know what it looked like before that.

    Now, about 10 days later, I have the following symptoms:

    irritability/rage, cognitive decline (reading even Harry Potter would be too hard, writing impossible), depression, feelings of everything falling apart, continued feelings of brain inflammation/compression, flushed face, stiff neck, insomnia, waves of chills/fever, stiff neck, sore throat, vision decline, "fireworks" in the eyes (looks like sparkly bugs swimming in various directions), strongly increased mold reactivity.

    I feel lethargic in terms of wanting to do things, but not tired. I don't even feel like lying down.

    I had some of these symptoms (to a much stronger extent) about a year ago when i took a small amount of doxy (50 mg). I think conceivably I might have some kind of latent lyme infection, which I was thinking I was going to try to address after I had a total handle on the mold.

    I actually had doing fantastic (100% of functioning in EVERY respect) just addressing mold over the past six weeks, since visiting Erik Johnson (erikmoldwarrior) and learning his mold-avoidance strategies. It's taken a lot of work and lifestyle adjustments, but getting full functioning back was a real miracle.

    (I have absolutely typical CFS in every respect, have been ill for a dozen years, never had a remission before, and last year was comatose in bed for 18-22 hours a day. Getting wholly better through diligent means was pretty amazing.)

    I'm hoping that by continuing to avoid mold, my immune system will be strong enough to help to fight this (possible) lyme infection off at the pass. Obviously I want to address it in every way that I can.

    My CFS doctor (Dr. Keith Berndston) ordered a Western blot and CD57. I don't know how long they'll take to come back. And they may not be accurate.

    Keith is a very good and progressive CFS doctor, but hesitant to treat with antibiotics for a long period of time. I'd like to see a good LLMD, but they seem really hard to get in to see.

    I'd rather not take doxy or minocin since they had really horrific effects on me last year even at small doses. Maybe with an improved immune system it would be better now. I have some of that available now though.

    I'd much prefer to take amoxicillin or ceftin, since I've tolerated those drugs before. There seems to be some disagreement about whether they're appropriate for lyme though. I also would need to convince my doctor to prescribe it.

    I'm thinking I'm going to go buy some oregano oil, since that has seemed to have positive results in general in the past (though I'm not absolutely sure what it was killing).

    I have two big bottles of some good-quality colloidal silver on hand. I don't know if that would be helpful.

    I get iv's of VItamin C twice a week. In high dose (I usually get 50 cc's), this supposedly converts to hydrogen peroxide in the cells and kills bacteria. The first few times I did this high dose, I got a die-off reaction similar to that with doxy. Since then, I've tolerated it fine. Yesterday, we ramped up the dosage to 75 cc's. I got increased chills/feverish feelings afterwards, though I'm not sure if that's due to the disease progression or die-off.

    So.....thoughts???

    And if you think I should go with a drug, dosages and length of time?

    Thanks much for your help!

    Best, Lisa
  2. Daisys

    Daisys Member

    For those who start on doxycycline right away, before the tests even come back, the infection can be effectively treated without long term ABX. Go to ILADS site, and look at the Burrascano papers, the compliled protocol that LLMDs follow, and bring that info to your doctor. If he follows it, you may "get off easy."

    I can't remember off hand what the amount of ABX is or how long, but maybe your doctor will go for it. If not, go to lyme.net flash medical questions. They have private messaging, and will tell you the nearest LLMDs to go to.

    I'd ask to get started even before the appt. with my symptoms list, and maybe you can cut this infection off before it gets too far along that way. I think some LLMDs will do that, not sure.

    Hope you have success with a quick treatment.
  3. Slayadragon

    Slayadragon New Member

    Hi Daisy,

    It's good to hear from you! It's been a long time since we chatted frequently on the CFS board. How are you doing?

    I've been reluctant to take doxy before since it was so hard on me, but it seems time. I tried taking 50 mg earlier today, just to see what would happen. I will increase to the amount I can stand it.

    I'm wondering if adding some natural stuff will help. Doxy is bacteriostatic, which (I think) means that the body has to actually kill the stuff itself after it's let loose. I think the herbs etc. all just kill stuff, and so maybe they would give my system a little help.

    Does this make sense to you (or anyone else here)?

    Right now I'm thinking about oregano oil, elderberry, astralagus and colloidal silver. I'm certainly open for suggestions though!

    Oh, also, I have a zapper. Has anyone had any success with that?

    Thanks so much for your help, Daisy. I think my doctor will be much more inclined to do a shorter course of doxy than one that goes on for months, though I certainly would rather be safe than sorry in this.

    How will I know when I have gotten enough benefit from it.

    Best, Lisa
  4. pw7575

    pw7575 New Member

    I wouldn't bank on the test results. As you said they aren't very accurate PLUS I have read that it can sometimes take up to two months for it to show up in the blood. You may get lucky with a positive test but even if you don't hopefully you can get some ABX from the doctor.

    Daisys is right and that if you catch it right away the ABX should take care of it pretty quick so there would be no need to have long term ABX. So that should resolve this current infection. Now if you have a long term infection as well that you will need to take care of differently at some point.

    I think anything you can start taking now would be helpful. It sounds like the oregano oil, the colloidal silver and the vit C iv's would all be good. Anything like those that act as natural antibiotics would help I would imagine.

    As far as the ABX if you are just treating this current infection than 4 weeks of ABX should be good. I am not sure of the normal dosages though. I am new to all this Lyme stuff since I was just diagnosed a week and a half ago.

    Let us know how it goes! I am so sorry this happened when you were just doing so well recently.

    Take Care,
    Pam
  5. pw7575

    pw7575 New Member

    I didn't see your last post. I think the herbs will certainly help. From what I have been reading a combo of ABX and natural usually works best but like I said I am still new to this and doing research. I think the herbs you just mentioned would be good...oregano oil, elderberry, astralagus and colloidal silver plus your IV vitamin C. Also garlic is great so you could add that in as well if you wanted.

    I have heard zappers are good or rife machines actually (are they the same thing?). I would do a variety of things. The ABX plus all the rest of this stuff should knock it out I would think. Since you caught it right away than I 3-4 weeks of ABX is the standard treatment so you wouldn't have to do any long term ABX.

    If you think you might also have an old infection in addition to this new one you may want to keep treating with those herbs for long term to try and resolve that as well. I have read you need to take a break from herbs once in a while though if using them long term. I think Stormy used to recommend 3 weeks on 1 week off if you are using them long term. She also used to rotate different herbs.

    Good Luck!
    Pam
  6. Daisys

    Daisys Member

    I hear that doxy is bacteriastatic at the lower dose, but LLMDs use a double dose, and at that higher concentration, it kills, and also gets past the BB barrier. So, I was on 400mg, I think, twice a day with doxy, along with another antibiotic to kill the other form. I couldn't remember how long a person stayed on it when they start treatment immediately. I believe it's in the Burrascano paper at the ILADS site.

    Your new name threw me for awhile. I'm glad you found out about the mold. If you make an appointment for an LLMD, one thing you can do while waiting, is get NutraMedix Samento (TOV free) and Cumanda. I'm off treatment for the early winter, due to severe SAD that makes me sick every autumn/early winter. I'm taking those 2 products to keep things from getting worse, but doubt if they cure. (Some who use natural products add to these two, I think it's called the Cowden protocol.)

    What I'm doing is first: start with 10 drops of Samento 2 times a day. Add 2 drops daily until I get to 20 drops. Stay with that for 2 weeks. Then switch off with the Cumanda, 12 days each, 20 drops twice a day. I am herxing slightly with this, so it's encouraging me that the infection won't get out of control while I wait to get stronger.

    Later in the Spring, when I'm stronger, I'll continue my treatment--I'm at the last 3 month phase of lyme treatment. I'll be taking flagyl to bust the cysts that remain. I guess flagyl (along with Cednifer) will kill a lot of them, and my immune system will be getting stronger. After that, I'll be taking herbs to keep from relapsing. Probably the 2 I'm on now, and possibly others added in.

    I had a full month of feeling 80% of my normal before starting flagyl/omnicef. I could tell it was bad timing, and asked to be on "hold" thru the worst of the dark days. So, I'm seeing the light at the end of the tunnel. Meanwhile, I caught a virus and it's hung on for 2 weeks now, so I know I made the right decision to hold off treatment at this time. I hear flagyl is quite rough, and I'm sure I'd be overwhelmed with it right now.

    So, anyway, that's where I am right now. I hope you get the lyme taken care of. I know you're aggressive about getting treatment, and won't just take this "lying down" (figuretively, ha ha). I'll be interested in seeing how you get this taken care of. I do recommend finding a good LLMD in your area, even if you do have to wait. I've got a good one, and am so glad--I trust his decisions, and he respects my input, so it's been a good partnership.
  7. Slayadragon

    Slayadragon New Member

    An update:

    Yesterday I took 150 mg of doxy, about 1/3 cup of MesoSilver colloidal silver and some oregano oil. I also had a 75 cc iv of Vitamin C on Monday.

    I expected to feel a lot worse. This past summer, when I was feeling moderately recovered (80-85%) from my efforts with regard to mold, I had a big reaction to only 50 mg of doxy. (Lyme rage....I hate that one!) So I put it aside.

    This time, so far so good. My cognitive function is not quite back where it was two weeks ago (e.g. 100%+), but everything else is totally back to normal.

    It could be that dumping all that colloidal silver in my body did magic, but I think it’s the mold avoidance. Since I took “lessons” with Erik out in Lake Tahoe, I’ve been at nearly 100% even in Chicago. (I was perfectly pre-illness well when I was with him, but that’s harder to do even with sophisticated tricks in a city.)

    It’s been my hope that addressing mold would get my immune system up and running well enough to deal with the bugs (viruses, lyme, cpn, other bacteria), and perhaps that’s actually happening. The thought is exciting.

    (My yeast problem has gone away over the last few months too. I’m going to restart probiotics now that I’m taking doxy.)

    So presuming I actually can take doxy, it seems that I should try to ramp up to 300 mg and stay on it for 1-3 months? Thoughts?

    (Daisy, are you saying that you think you were on a total of 400 mg a day or 800 mg?)

    I’m going to call Dr. C in Missouri tomorrow and see if he has any availability.

    I also bought some Sambucol (elderberry) and astralagus. After a day or so (if I’m continuing to do well), I’ll add them in.

    A zapper is a really scaled down rife machine, with just one frequency. It cost me about $100. I got too much of a herx from it last year (before I started addressing mold), but it seems worth giving it another try since I have it.

    Sorry to hear about the SAD, Daisy. I suppose you’ve tried St. Johns Wort.

    Kathy (or anyone), do you think there’s much difference between minocin and doxy? I had the same reaction to tiny amounts of both of them, way back before I started addressing mold. I have some minocin too. Would it be reasonable to just substitute it if I run out of the doxy before I get to an LLMD?

    What about a combination of amoxicillin and doxy? Or one after the other?

    I have found cholestyramine to be a challenge to take, which is indicative of a previous lyme infection. From what I can tell, mold poison doesn’t seem to prompt those big intensification reactions from cytokines going off. I can see why LLMD’s are reluctant to use it.

    My current strategy with regard to toxins is to not go after the biotoxins (lyme and mold) and instead target “regular” toxins (metals, chemicals). I’m one of the people who had huge detox reactions when I started the methylation supplements (FolaPro and B12), so I think that my body’s “toxic storage facilities” are clogged up with so many other toxins that it doesn’t have any place to put the biotoxins. Maybe if I can get the other stuff out (with continued methylation support, chelation, glutathione supplementation and brown seaweed), the biotoxins will be less of a problem.

    Thanks for all your help!!!
    [This Message was Edited on 10/23/2008]
  8. redhummingbird

    redhummingbird New Member

    Hi Lisa-

    I'm sorry you're having to deal with this after having reached 100% funtioning.

    I agree with Kathy. I think seeing an LLMD is the best thing to do rather than guessing about substuting/mixing antibiotics.

    The difference between doxy and mino is that mino is more powerful and crosses the bbb better. Most people have to ramp up with mino.

    I would start calling LLMD's. I see that you're on lymenet. You can get referrals there if you haven't already. Just call and get the soonest available appointment.

    Having lyme go untreated, undertreated, or mistreated can cause you to lose the ground you've worked so hard to gain.

    Good luck-

  9. Slayadragon

    Slayadragon New Member

    Okay, thanks.
  10. Slayadragon

    Slayadragon New Member

    Dr. C in MIssouri doesn't have any appointments available until February. I got on the waiting list.

    I don't know that my other doctors will prescribe antibiotics as suggested.

    Does anyone have any suggestions?

    Especially for doctors in southern states where it's still warm (above freezing) by the time I would expect to get an appointment?[This Message was Edited on 10/23/2008]
  11. Daisys

    Daisys Member

    The thing about combining ABXs is that one will kill the spirokete form and the other is to kill the L form it takes to escape the first ABX. These antibiotics get changed every 6 months, so the bacteria can't get used to any one ABX, and figure out a way to escape it. At least that's the approach my LLMD took with me. LLMDs know which ABXs to combine to be effective. I wouldn't attempt to try this myself.

    Here's one suggestion, since you have an appointment with an LLMD. When I asked for my treatment to be put on hold thru the short days of winter, I was told to take NutraMedix products: Samento (TOA free) and Cumanda.

    My husband looked around for the best price, and found a site that sold those products at less cost than other sites. When I got the 2 products that are supposed to keep the infection in check until I resume treatment, I got literature with it. This site offers packages for treatiing Lyme with the 2 I'm taking plus some other products. It's based on the "Cowden Protocol" which is used by some with lyme disease who don't want to take antibiotics.

    The site is: www.MyHerbs.net or call 1-800-215-4682. I don't know any more about it other than the products I recieved look to be genuinely from Nutramedix, which my doctor specified.

    Personally, if I was on my own, I would get a package of lyme fighting products to at least keep them from proliferating while waiting for the appt. The site I just posted offers a 40-day acute lyme support protocol (with Carnivora, Samento TOA-free, Cumanda, Quina and another product not identified by name), and another is a 100-day protocol (with Samento, Carnivora, and Cumanda). I'd probably call and talk to someone to find out which is more appropriate for me, if I was managing this for myself.

    Oh, I think I was taking 200mg of doxy twice a day, so total 400mg a day. I took 2 pills twice a day, and each pill is "the" regular dose usually taken.

    I wonder if your reaction to taking doxy was herxing. If you have lyme, and the doxy killed some of the spiroketes, they release toxins, and also their dead bodies are toxic, so you are worse off till you can get that out of your system. Sometimes it's that, sometimes a person just can't tolerate a certain antibiotic. I wouldn't know which would apply to you.

    Here's hoping you get something to work for you until you can get in to see the LLMD.