I believe i got Lyme about a month 1/2 ago. I have been taking doxy (400 mg) for about 2 weeks (against my doctors orders). My doctor (naturopathic) thinks that I should take the CDC recommended dosage of 200 mg per day. I have been trying to follow Dr. Buscarros guidelines.
However, I believe that if I keep my immune system healthy, eat healthy (which i do), use positive imagery, etc... I will be fine taking 200 mg/day.
What do you think? I mean, I get scared looking at the realities of the many sick people on this site... but I wonder, maybe their immune systems are already plagued with bad american diet ( too much sugar, unhealthy fats, too many processed foods, etc.) and negative mind state. These things can definately make a person sick.
I have a healthy immune system.

I see Dr. C in Mo. I am on 400mg daily of doxy in my 5th week.....thinking of changing abx. (he said if you do not see real improvement with that after 4 weeks go to the next one, I am not sure what "improvement" really is. Is it no pain and fatigue or is it herxing good?)

Anyway, the stay out of the sun is FOR REAL!!!! I work at a car lot and HAVE to go on the lot frequently. I have spots on my arms and have burnt my heels.

I sure can tell when I get the sugars out of my diet, for I do not have the sluggish feeling when I eat sugar.

I went down like a rock when I got infected. I tried many alternative therapies in the 10 years before I was diagnosed, and none of them could keep me well, though some helped temporarily.

Knowing what I know now, I would jump at the chance to treat the infection early. I personally wouldn't mess around with the lower dose if you can tolerate the higher. You want to stop the bacteria in it's tracks, before it has a chance to become fully established.

That got rid of all my symptoms. My doctor then stopped the treatment. A few days later all the symptoms came back.

My doctor (a non LLMD btw) did not want to treat me further for Lyme, since my test was negative.

One month later, I had had enough of him and dropped him. Found an LLMD who put me back on Doxy, but this time 400mg/day for 30days.

This time around, however, Doxy did NOTHING for me. I think the Lyme had morphed or something and no longer reacted to the Doxy.

So if I could go back to the beginning, I wish I immediately had found an LLMD and that he had put me on higher dose Doxy and for a long time to make sure all the Lyme was killed.

LYME DISEASE TREATMENT INFORMATION

There is no universally effective antibiotic for treating LB. The choice of medication used and the dosage prescribed will vary for different people based on multiple factors. These include duration and severity of illness, presence of co-infections, immune deficiencies, prior significant immunosuppressant use while infected, age, weight, gastrointestinal function, blood levels achieved, and patient tolerance. Doses found to be effective clinically are often higher than those recommended in older texts. This is due to deep tissue penetration by Bb, it's presence in the CNS including the eye, within cells, within tendons, and because very few of the many strains of this organism now known to exist have been studied for antibiotic susceptibility. In addition, all animal studies of susceptibility to date have only addressed early disease in models that behave differently than human hosts. Therefore, begin with a regimen appropriate to the setting, and if necessary, modify it over time based upon response.

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ANTIBIOTICS

There are several types of antibiotics in general use for Bb treatment. The tetracyclines, including doxycycline and minocycline, are bacteriostatic unless given in high doses. If high blood levels are not attained, treatment failures in early and late disease are common. However, these high doses can be difficult to tolerate. For example, doxycycline can be very effective but only if adequate blood levels are achieved either by high oral doses (300 to 600 mg daily) or by parenteral administration.

Penicillins are bactericidal. As would be expected in managing an infection with a gram negative organism such as Bb, amoxicillin has been shown to be more effective than oral penicillin V. Because of its short half-life and need for high levels, amoxicillin is usually administered along with probenecid. Since blood levels are extremely variable they should be measured.

Cephalosporins must be of advanced generation: first generation drugs are rarely effective, and second generation drugs are comparable to amoxicillin and doxycycline both in-vitro and in-vivo. Third generation agents are currently the most effective of the cephalosporins because of their very low MBC's (0.06 for ceftriaxone) and they have been shown to be effective in penicillin and tetracycline failures. Cefuroxime axetil (Ceftin), a second generation agent, is also effective against staph and thus is useful in treating atypical erythema migrans that may represent a mixed infection, containing some of the more common skin pathogens in addition to Bb.

When choosing a third generation cephalosporin, there are several points to remember: Ceftriaxone has 95% biliary excretion and can crystallize in the biliary tree with resultant colic and possible cholecystitis. GI excretion results in a large impact on gut flora. Biliary and superinfection problems with ceftriaxone can be lessened if this drug is given in interrupted courses, such as three to five days in a row each week. More recently, chenodeoxycholic acid, used to dissolve gallstones, is being prescribed along with ceftriaxone as prophylaxis. Cefotaxime is less convenient to administer because of the need for either multiple daily doses or continuous infusions, but as it has only 5% biliary excretion, it never causes biliary concretions, and may have less impact on gut flora. It is the experience of some clinicians that cefotaxime can be even more efficacious if given as a continuous infusion, rather than in interrupted doses.

Erythromycin has been shown to be almost ineffective as monotherapy. The advanced macrolides and azalides such as azithromycin and clarithromycin can be difficult to tolerate orally due to their tendency to promote yeast overgrowth and poor GI tolerance at the high doses needed. As they have impressively low MBCs and do concentrate in tissues and penetrate cells, they theoretically should be ideal agents. However, initial clinical results were disappointing, especially with oral azithromycin. It has been suggested that when Bb is within a cell, it is held within a vacuole and bathed in fluid of low pH, and this acidity may inactivate this class of antibiotics. Therefore, they are administered concurrently with hydroxychloroquine or amantadine, which raise vacuolar pH, rendering these antibiotics more effective. It is not known whether this same technique will make erythromycin a more effective antibiotic in LB. Another alternative is to administer azithromycin parenterally. Results are excellent, but expect to see abrupt Jarisch-Herxheimer reactions.

Metronidazole (Flagyl) is commonly used in select patients with treatment resistant, chronic Lyme. When present in a hostile environment, such as growth medium lacking some nutrients, or spinal fluid, or serum with certain antibiotics added, Bb will change into a cystic form. This cyst seems to be able to remain dormant, but when placed into an environment more favorable to its growth, the cyst can open, and an intact spirochete emerges. The conventional antibiotics used for Lyme, such as the penicillins, cephalosporins, etc. do not kill the cystic form of Bb. Furthermore, the cyst lacks the usual surface antigens found on the spirochete (these are the markers detected by ELISAs and western blots). This may be another reason for the chronically sick Lyme patient remaining seronegative.

There is evidence that metronidazole will kill the cystic form. This fits with the now well known clinical observations that metronidazole can be remarkably effective for many chronic Lyme patients. However, this medication apparently has no effect on intact spirochetes. Therefore, the trend now is to treat the chronically infected patient who has resistant disease by combining metronidazole with one or two other antibiotics to target all forms of Bb. Because there is laboratory evidence that tetracyclines may inhibit the effect of metronidazole, this class of medication may not be as useful as others in these two- and three-drug regimens. There have been some recent reports that Bb does not contain genes that would confer susceptibility to metronidazole. However, this clearly does not fit with in vitro and a large body of clinical data, which have demonstrated the usefulness of this agent in the Lyme patient. Perhaps we do not have all the genetic information needed to dismiss the use of this agent. Once again, real world experience is one step ahead of bench research.

Important precautions:

Pregnancy while on metronidazole is not advised, as there is a risk of birth defects.
No alcohol consumption! A severe, ``antabuse'' reaction will occur, consisting of severe nausea, flushing, headache, and other unpleasant symptoms.
Metronidazole is potentially neurotoxic. Peripheral neuropathy may result. Therefore, breaks in treatment are commonly prescribed, such as using this agent every other week.
Yeast overgrowth is especially common. A strict anti-yeast regimen must be followed.
VERY severe Herxheimer-like reactions are seen in the more ill patient during the first week of therapy, and again four weeks later.
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COMBINATION THERAPY

This consists of using two or more dissimilar antibiotics simultaneously. There are several reasons for this. Combinations should utilize dissimilar antibiotics for antibiotic synergism, to better compensate for differing killing profiles and sites of action of the individual medications, and to cover the three known morphologic forms of Bb. The idea is to work in body fluids and in deep tissues, outside and within cells, and effect killing by different mechanisms for synergism. An example is a combination of amoxicillin and clarithromycin. Note how complimentary these two are for treating infection with Bb. GI intolerance and yeast superinfections are the biggest drawbacks to this type of treatment. However, these complications can often be prevented or easily treated, and the clinically observed benefits of this type of regimen clearly have outweighed these problems in selected patients.

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PULSE THERAPY

This consists of administering antibiotics (usually parenteral ones) two to three days in a row per week. The efficacy of this regimen is based on the fact that it takes 48 to 72 hours of continuous bactericidal antibiotic levels to kill the spirochete, yet it will take longer than the four to five days between pulses for the spirochetes to recover. This allows for several advantages:

Dosages are doubled (ie: cefotaxime, 12 g daily), increasing efficacy
More toxic medications can be used with increased safety (ie: vancomycin)
May be effective when conventional, daily regimens have failed.
IV access may be easier or more tolerable
More agreeable lifestyle for the patient
Often less costly than daily regimens
Note that this type of treatment is expected to continue for a minimum of ten weeks, and often must continue beyond twenty weeks. As with all Lyme treatments, specific dosing and scheduling must be tailored to the individual patient's clinical picture based upon the treating physician's best clinical judgment.

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MONITORING THERAPY

Drug levels are measured, where possible, to confirm adequate dosing. The regimen may have to be modified to optimize the dose, and again at any time major changes in the treatment regimen occur. With parenteral therapy, CBC and chem/liver panels are done at least twice each month, especially during symptom flares, with urinalysis and protime monitored monthly.

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INDICATORS FOR PARENTERAL THERAPY

The following are guidelines only and are not meant to be absolute. It is based on retrospective study of over 600 patients with late Lyme disease.

Illness for greater than one year
Prior immunosuppressive therapy
Major neurological involvement
Active synovitis with high sedimentation rate
Elevated protein or cells in the CSF
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ANTIBIOTIC CHOICES

ORAL THERAPY

Always check blood levels when using agents marked with an *, and adjust dose to achieve a peak level in the mid- teens and a trough greater than five. Because of this, the doses listed below may have to be raised. Consider Doxycycline first due to concern for Ehrlichia.

*Amoxicillin Adults: 1g q8h plus probenecid 500mg q8h; doses up to 6 grams daily are often needed
Pregnancy: 1g q6h and adjust
Children: 50 mg/kg/day divided into q8h doses
*Doxycycline Adults: 100 mg qid with food; doses of up to 600 mg daily are often needed, as doxycycline is only effective at high blood levels.
Not for children or in pregnancy.
If levels are too low at tolerated doses, give parenterally.
*Cefuroxime axetil Oral alternative that may be effective in amoxicillin and doxycycline failures. Useful in EM rashes co-infected with common skin pathogens.
Adults and pregnancy: 1g q12h and adjust.
Children: 125 to 500 mg q12h based on weight.
Tetracycline Adults only, and not in pregnancy. 500 mg tid to qid
Erythromycin Poor response and not recommended.
Clarithromycin Adults: 500 to 1000 mg q12h. Add hydroxychloroquine, 200-400 mg/d or amantadine 100-200 mg/d.
Cannot be used in pregnancy or in younger children
Azithromycin Adults: 500 to 1200 mg/d.
Adolescents: 250 to 500 mg/d.
Add hydroxychloroquine, 200-400 mg/d, or amantadine 100-200 mg/d
Cannot be used in pregnancy.
Oral azithromycin is not as effective as clarithromycin.
Augmentin Cannot exceed three tablets daily due to the clavulanate, thus is given with amoxicillin.
This combination can be effective when Bb beta lactamase is felt to be present.
Chloramphenicol Not recommended as not proven and potentially toxic.
Metronidazole (see text) 500 to 1500 mg daily in divided doses. Adults only.

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PARENTERAL THERAPY

Everyone is different and will react differently to different things.

I started on Doxy at 200 mg per day about 5 and a half weeks after it was likely that I was infected.

It got rid of my rash within days but the rest of me felt about the same-which was functional but not great.

I upped my dose of of Doxy to 400 mg per day about 10 days later.

Immediately I changed radically and went through about 4 weeks of unpleasant and typical (brain fog, body aches, malaise etc.) but not extreme herxes.

(Now, I know that according to Dr. C in MO. I probably should have laid off of the abx to let my body catch up with itself but I didn't know it then.)

After about 5 weeks on the doxy I suddenly felt a whole lot better-more like my old healthy self.

Stayed on Doxy until I went to my first LLMD appt last week.

Now I will be starting Ceftin to attack other forms of the bacteria.

I'm actually feelling a bit worse since I stopped the doxy and haven't started the other abx yet.

But I didn't take good care of myself when I travelled to see the Dr. and didn't drink enough water, watch my sugar consumption, forgot to take my supplements and didn't do yoga or walk daily.

That was usually enough to make me feel crummy even before I started on the Lyme experience.

So I don't know if the way I feel now is the lyme kicking back in or just me mistreating my already troubled body.

Anyhow back to my opinion....how are you feeling? Are you feeling better? Are you herxing?

My choice was to go with the higher dose for a longer time to utilize my best chance of knocking the bacteria out early in the disease while I had a chance instead of letting the critters get a better foothold.

I'm a big believer in natural and alternative healing and therapies and often skeptical of the western medical world but in this case I felt the "Big Guns" were needed.

Its still important to do everything else to be healthy too.

Anyhow there are many here wiser than me but I thought I'd share my experience with you since it seems sort of similar to yours.

quote:

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Originally posted by earthpeace:
Thank you for all of your replies. It is very helpful (and at times confusing).
So, I have been noticing pins and needles in my arms and strangely on my nose. Also, I get flushed easily... and I am noticing that my nose is developing abnormal redness... could that be from the sun (even though there hasnt been a ton of sun lately).. maybe i should wear a hat. What do abx do that?
I have noticed that sweets make me feel sicker... and actually, I dont have any craving for them like i have had in the past. actually, the thought of them turns me off... i am glad for this.
anyhow, i also had this pain in the back of my head for a couple days, it's gone now.
the abx were making me feel nausous before but it seems like my body is getting used to them so i dont feel that way anymore.
I began taking abx about 1.3 months after i believe i got lyme. It has been almost two weeks and i am feeling better. I am not feeling brain fog, fatigue, flu like symptoms... etc....I have been taking about 3-400 mg /day.

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Here's a handout that came from my Support Group. It's just some background reading about starting Lyme treatment.

It's kind of like a new patient handbook. (Disregard the Title------& sorry, I don't know the author.)

I don't agree with everything in it especially regarding sleep & pain. I have to sleep & I have to take Motrin for pain if herxing.

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http://www.angelfire.com/me2/StarShar/Herx1.html

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My very favorite handout, complete with a chart of symptoms & how Lyme affects each body organ is on this link. You'll want to print it out so you can refer to it often.

My copy is always handy. It's truly a goldmine of information. The first 2 pages are narrative, and then the charts appear.

It's in pdf file form so definitely print it out.

You'll need to click on link below & then scroll down the page until you see the green blob and "Symptoms"

"Lyme Disease Symptoms & Characteristics."

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

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Best wishes,
Jan

That being said, I wouldn't worry that you'll get worse; if you do it is probably due to a "herxhoimer reaction:"- this is actually a sign that something right is happening!

Yes, lyme does suck. Hang in there- the people here were very helpful to me )even though they perhaps consider me kind of a radical 'hippie type' ....,uh,..'codger'...
Much good info comes through here!
DaveS
.

I look like Rudolph, the sun is the culprit though. Does not take but one minute. My heels have burned and I have spots on my arms due to the doxy with the sun.

Many of us here eat healthy and were athletes before.

How can you know you don't have a mild allergy, without noticable symptoms, to something? That is all it takes to compromise your immune system.

I, apparently, don't tolerate wheat well anymore. I had no symptoms. The gluten intolerance prevented proper absorbsion in my digestive tract, compromising my immune system.