posted
Has anyone ever made progress going from "regular" doses of antibiotics to more aggressive doses?
My Doc. says we need to be more aggressive- currently on 500 mg. of Doxycycline and 400 mg. Plaquenil 2x per day- which seems aggressive to me.
I can't walk and haven't been able to do so since I started antibiotics 6 mos. ago.
I am worried that rather than getting better, more high-dose antibiotics would put me in a coma.
Posts: 48 | From Vermont | Registered: Oct 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Just my opinion:
I think your protocol is already very aggressive and I am not surprised you can't walk. I am on much less and can't walk without a walker.
You must be having a heck of a herx.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
By more aggressive, does you doctor mean more of the same antibiotics, or a different combo?
I never did well on 5 months of high dose doxycycline. Switching to Omnicef, and then adding in Zithromax gave me my first period of releif. It was a more aggressive protocol, and I herxed hard in the beginning, but I also improved more than on doxy.
posted
The Doc. didn't specify if he wanted to switch the abx. or just add more- he is kind of letting me have a bit of input. I asked for the doxy. because after 1 month of it (my first month of antibiotics) I had less brain fog and was starting to have more energy.
It has all been downhill since then. I've been on IV Rocephin, Monocycline and Zithromax (which I hate).
I was thinking about asking him if I could try Tetracycline next- but I don't want to do super high doses, they seem to do a lot of collateral damage.
Posts: 48 | From Vermont | Registered: Oct 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
How long were you on each drug protocol? Sometimes it takes quite a while to see improvement. If you haven't done well on minocycline or doxycycline, I don't know if there is much reason to think you would do well on tetracycline.
Why do you hate Zithromax? Maybe Biaxin or Ketek would be viable options? Omnicef and Ceftin are other possibilities, maybe in combo with a macrolide, or Flagyl. Also, it sounds like you haven't been treated for any coinfections. Depending on how long you have been in treatment, that may be something you need to have looked at.
Are you deciding on the protocols because your doctor isn't Lyme literate? Maybe you need to have a doctor who can have more informed input?
"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.
Kill kinetics indicate that a large spike in blood and tissue levels is more effective than sustained levels, which is why with doxycycline, oral doses of 200 mg bid is more effective than 100 mg qid.
Likewise, this is why IV doses of 400 mg once a day is more effective than any oral regimen."
I split up the sentences to make it easier to read here. I hope I'm not going against any copy rights by copy/pasting this info.
Hope this helps,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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posted
Oh no, my doctor is quite lyme literate, but he doesn't know what will make me better. He has lots of suggestions, but says it is ultimately up to me to decide what I am willing to do.
I do have Bartonella. I spend so much time herxing, I haven't really had a chance to add the Bartonella antibiotics yet.
Some docs believe the lyme drugs will kill co-infections (mine doesn't) but I am still hoping they are right.
I just know I was walking before antibiotics, and now I am not- they got me here, how can I get out of here with massive doses of them?
Posts: 48 | From Vermont | Registered: Oct 2005
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liz28
Unregistered
posted
I was in your situation the first 4 1/2 years I was sick, with what turned out to be Lyme, bartonella, and babesia. Like you, I was on ALL these drugs (except the ones that kill co-infections, of course) and the most they could do is hold back the Lyme from becoming lethal.
Go for the bartonella right away. Do not pass Go, do not collect $200. Not only can its symptoms be interchangeble with Lyme (although you should definitely still be on something to control the Lyme while you treat the bart), but it can completely destabilize your thinking. Bartonella causes extreme anxiety, disoriented thinking, obsessive compulsive disorder, unreasonable mood swings, disabling fevers, dangerously reduced impulse control, and eventually, if left untreated, some other stuff you REALLY don't want to know about. Go to Google and plug in "bartonella" and "Gaito," and you will pull up a terrifying story of a bart sufferer that will convince you right away.
Most people can tolerate one of the two bart drugs, levaquin and rifampin, but not both. In my case, levaquin was not the right drug, and rifampin was the way to go. The right drug will cause flares of fever and rage, so make sure you've warned your friends and family.
Both levaquin and rifampin require tons of liver support, or your system will get overwhelmed.. Also, there may be some other Lyme abx you haven't tried yet. Like plaquenil was mainly prescribed to increase the strength of zithromax and to try and head off drug resistance with mepron. But if you can tolerate ketek, it's much stronger than zithromax and does not require a companion drug.
Like Riversinger, I take omnicef with a macrolide. Ketek has worked wonders for me as long as I combine it with other abx, but can not hold off Lyme on its own. For other people, ketek has proved sufficient to reduce their Lyme symptoms.
And although not many people have posted about it lately, you used to need cyst busters in your abx combination. Maybe it's become obsolete now? Bicillin also has a following, and biaxin has helped many people when it's used in a combination. Or you could throw in ceftin, which is weaker than omnicef and rocephin but still a very good drug, and see if that helps a bit.
This link should lead you to Dr. B's 2005 treatment guidelines. You don't have to use everything he recommends, but his overall model can be very helpful in getting a handle on the latest Lyme thinking.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi vlser Sorry to hear you are having a hard time.In many days durning my three years heavy treatment I was laid low to the ground too and didn't know how I was ever gonna get up again.
But other's who have posted above have given you some really right on information.
There is alot of good feed back given here.
I just want to add a few ideas. How long for you sick for? If it has been a long time it usually takes longer to get better.
I was so much worse the first two years on heavy treatment.I have been sick many years.
I think good advice to getting well is to attack all coinfections as posted above.
Also what turned the corner for me was adding cyst buster's too.
And changing my diet to no sugar low carb.I had a hudge yeast problem(that can Lay you low too) from the years of abx and didn't even know it.Untill I got it under control.
I take alot of good multi-strain probiotics.
I take diflucan now and also think this is helping.
I am also detoxing.ie: hot epson baths,herbal teas,podi patches,herb detox sups ect..
When you herx you can get a build up of toxins that I feel slowed my progress.
I am also now doing one week on heavy abx and one week off.This is allowing my system to recover,detox,get my strength back ,etc..
But it's taken three years to get to this point.I have had many low periods and still do but am finally starting to have some good weeks.
This is just my own personal experience I am sharing.I am better now because other's here have shared their's too.I hope you will be better soon too and find your way .
Take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
My treatment(s) has been about as aggressive as you can get. More than what you are taking now. the 500 mg x 2 day for doxy (i assumE orals) is quite high but I was also self medicating at up to 1 g/day (somtimes as a single shot daily, note that a small mcdonals milk shake makes it easy to take) while waiting for doxy IV it only managed to slow down the slide for me. Without this high oral dose things where getting bad VERY quickly. Ended up with 500 mg doxy IV daily. Which did JUST manage to reverse things. I was also taking high dose levequin at the same time + plaquinal + mepron + ( i dont remember) Any fatigue would case a back slide in progress. Stopping caused rapid and significant replase.
This was only one epsidode. I also had many others with different drugs, all of which relapsed once the treatment was stopped. Of all the drugs, doxy IV was the hardest to take but helped the most with neurological problems.
I had/ have lyme + bart + babesia + ABX responsive mystery pathogen... all very hard to get rid of. More agressive DOES work.
Posts: 1184 | From north america | Registered: Feb 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I took up to it was either 5000 or 6000 mg's of combined abx's No coma
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
VSLer: Doxy's absorption IS affected by food. This is an example of how people cannot compare dosages of particular drugs, unless they're also discussing absorption rates- and that includes other substances (supplememnts and food for example) that are taken along with the drug (besides other drugs)
I've done a search for you. You'll have to cut and paste this URl into your browser as it's pretty long.
As far as searching on the net, you can Google a string of words thats pertinent to the info you're after - for example words like: absorption doxycycline food is how this post grad paper came up.
It takes time to understand what references you can rely on- so spend some time practicing searching for the info you want.
I've copied the "results" in case you have a problem accessing this article.
Results are summarised in [Table 1]. Standard breakfast reduced the bioavailability of doxycycline as judged by AUC to and maximum concentration reached in plasma, although the rate of absorption as judged by time taken to reach maximum concentration was not affected. [Fig. 1] gives doxycycline concentrations at different timings after drug administration. At 4, 6 and 8 hours after drug administration doxycycline levels were significantly higher when the drug was given on an empty stomach as compared to when given with food.
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i know most don't take what i did-but a year of it took away my fatigue and foot pain. it was: 20 amoxil 875 mg capsules a day plus 1000mg zith. after a year i pulsed with amox and biaxin instead of zith(i forget the biaxin dose.) and then i did a lot of cleansing-for over a year and continued to feel better. i never took more than 400 mg doxy a day-and always go on doxy after pulling off a tick. i took good acidolphilis, sbc and nystatin while on the high doses. (i could take a lot less of them and get the same results if i took them away from food) i have been off all abx for about 5 years. i am not better...but the fatigue and foot pain has not come back. my arthritis keeps getting worse and also neuro symptoms.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Wow, what a wealth of information you all are. As far as Doxy and food absorption, I always take it on a full stomache, as full as I can get or I throw-up.
I have been doing research and in my case, I think I am so bad because I have been on Steroids so many times and on another MS Drug that shut off my immune system. I think all this time shutting off my immune system allowed the lyme to get out of control.
What I can't figure out is why do some people get so much worse when they start antibiotics, and how do more antibiotics affect the immune system?
I wish I could stop all antibiotics, but when I stop I only continue to get worse.
Posts: 48 | From Vermont | Registered: Oct 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
quote:Originally posted by VLSer: The Doc. didn't specify if he wanted to switch the abx. or just add more- he is kind of letting me have a bit of input. I asked for the doxy. because after 1 month of it (my first month of antibiotics) I had less brain fog and was starting to have more energy.
It has all been downhill since then. I've been on IV Rocephin, Monocycline and Zithromax (which I hate).
I was thinking about asking him if I could try Tetracycline next- but I don't want to do super high doses, they seem to do a lot of collateral damage.
My hubby was the same way. He started the Doxy and had great progress......we thought we had this thing whipped! Yeehaw! After about 6 weeks of Doxy, there was no more improvement. So he moved on to the Zith (was allergic to Ceftin so couldn't do that one)...
The Zith has really been tough. I talked to the LLMD doctor's office today, and they told me to take it very slow on the Zith. So, hubby is going to back off the Zith for 7-10 days and see how he feels then.
I gotta tell you, after such great progress on the Doxy....the Zith has been disappointing. But, I think it's just disappointing cause it's so rough, and causes bad herxes.
The Doxy at first gives you such hope, and then ...wham......the Zith is rough.
Take care and good luck!
Posts: 1366 | From Southeast | Registered: Sep 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Lyme in some individuals is able to supress part of the immune system so it can survive. Large doses of steroids (and you had IV steroids, right?) are mega suppressive to the immune system, and probably your MS meds were the straw the broke the camels back. So you're probably correct in your assessment of why you went downhill.
Hydroxychloroquine and Doxy is a good combo. Give it a month and see if there's any improvements. In the mean time, try to take the doxy an hr or so after you eat - that may give you more absorption than with a meal. OR ask your Doc to order a blood test (drawn at a specific time after taking the Doxy) because serum levels can be checked for Doxy- then you'll know how much your absorbing.
As far as your question about abx and the immune system. They all affect the immune system, some more than others - and some of the mechanisms (other than antibacterial)are known, and some are not - it depends on the chemical class.
Barb
VLSer wrote: I have been doing research and in my case, I think I am so bad because I have been on Steroids so many times and on another MS Drug that shut off my immune system. I think all this time shutting off my immune system allowed the lyme to get out of control.
What I can't figure out is why do some people get so much worse when they start antibiotics, and how do more antibiotics affect the immune system?
I wish I could stop all antibiotics, but when I stop I only continue to get worse.
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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