posted
I saw my doc yesterday. I asked why some IIMD go slow with abx, and others go faster pace. She said starting at lower dose of abx reduces herx reaction. some patients ended up in hospital after giving large dosages of abx due to herx. That was the main reason. She also said that if you give large abx in the beginning, the BB will turn into cyst form and hide to evade the abx. But giving gradually is like staying under the radar, you are confusing the BB, attacking it at the same time. that made sense to me, but as the patient with all the symptoms, I want fast treatment. I am not patient of course. but I tried a higher dose of abx, I herxed badly. yet I get new symtoms, and I keep thinking, the bugs are multiplying and the abx is not killing anything. What do you guys think? Jenin
Posts: 455 | From Maryland | Registered: Jul 2007
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posted
I would have to agree with your llmd. Esp the herx part. I have heard of docs bringing up the dose until you start to herx and then hanging there for a little while, then bringing it up again. Some docs monitor the level of abx in your blood and adjust it that way. Either way as long as you stay the course you should see results.
I however in the past started the abx for a few months and then stopped cause I didn't think it was working. Got worse and started it again, stopped again etc. Mostly cause the regular ducks said it wasn't lyme. Now I am finally willing to continue abx and have started again. I too want to just get rid of this crap. I was told that it might take 1-4 years of abx and I guess I will do what I have to.
Hope things get better for you real soon. Rich
Posts: 413 | From nj | Registered: Nov 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Because in terms of quick vs slow---this is a marathon not a sprint.
This isnt like a regular infection you took a couple bottles of pills and your all better.
Turtle vs the hare,,,turtle wins the race every time!! me--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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tailz
Unregistered
posted
I took a very high dose of minocycline - 100mg twice daily - and I could not move the morning after the first capsule, yet I continued with the max dosing for one week.
My tongue turned black, my teeth turned grey, and I couldn't straighten my shoulder blades by the next morning, and this continued for one week.
This caused me to stop the abx temporarily due to the severity of the herx with this one.
I also was forced to discontinue IV Rocephin for 3 weeks after less than one week of infusions due to extremely high liver enzymes. I had to have a liver ultrasound.
So I would think your doctor is right - start slow or you are likely to need to stop the abx only to restart them later.
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posted
***She said starting at lower dose of abx reduces herx reaction. some patients ended up in hospital after giving large dosages of abx due to herx.***
That's for sure!
and I agree with the mantra Don posted:
Slow and steady wins the race!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
For those of us with tertiary quickly progressing Lyme- we can't afford to go slow!!!
I didn't have time!!!
For people who have time, sure*)!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I agree with the slow approach. I was given too much at once, and my body basically collapsed. I had to stop abx as a result. Plus i only weighed 89lbs.
I had one dr recently tell me that you treat the infection, not dose based on weight...but i really disagree, you cant have a cookie cutter plan with these diseases, you just cant.
He muttered something about building resistance with lower dose..
all my life no matter what infection i was always given child dose, liquid because of my weight, and it worked.
So im all for slow and lower dosing.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
quote:Originally posted by CaliforniaLyme: For those of us with tertiary quickly progressing Lyme- we can't afford to go slow!!!
I didn't have time!!!
For people who have time, sure*)!!!
same here didn't have time to go slow.
right on sarah like always
RR
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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posted
Different treatments work for different people. My LLMD is more aggressive, which suits me well.
He gives high dose abx, and Plaquenil as a cyst buster at the same time. He treats all three forms of borrelia at once to prevent it from just changing forms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Some people can't afford to go slow, while others can't afford to go fast.
It's not just about how sick a person is with neuro lyme. Other factors include strain (some produce more toxins than others), genetics, & history - all involved in herxing & whether or not it can get dangerous. Aggressive treatment early on might have put me on a ventilator, while it might take someone else off one. It really depends.
That's why I think the best LLMDs let a person's response guide how aggressive to be. Like all good medicine it's as much art as science and needs to be individualized.
Having said that, I personally never took less than standard doses of an abx unless the herx became unbearable (not just bed/couchbound, but really scary neuro stuff), in which case I'd try to get up to a standard dose as quickly as possible. This approach led to great strides over time.
Posts: 621 | From US | Registered: Jun 2006
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posted
for those who went fast, can you tell me how much dosage was, which drugs, iv if any, when IV was started? Jenin
Posts: 455 | From Maryland | Registered: Jul 2007
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posted
Long duration of abx is necessary because Bb reproduces very slowly compared to other bacteria. It is during the repro phase that Bb can be killed by the abx. The number I've seen recommended is 18 months of abx minimum.
As to dose, if you herx on low doses, it means you're killing off the infection. Larger doses won't reduce the amount of time you need to be on abx. IMO if low doses are doing the job, why risk the increased complications found with larger doses?
Posts: 727 | From USA | Registered: Mar 2006
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This works for me. I have uncomfortable herxes ... the ones in the beginning were worse ... now they just send me to bed or the couch, but I can go downstairs and fix myself something simple to eat, so I'm not completely disabled from them. When I'm not herxing, I'm about 80% and getting better each month.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
what are your symptoms? are they severe? jenin
Posts: 455 | From Maryland | Registered: Jul 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I have needed to go slower than I would like because I need to remain functional out in the world, earning a living. Even so, it has been quite difficult, both because of the impacts of the TBD's themselves and needing rest while herxing.
Ideally, I would have enough money to take at least 6 months off and ramp up treatment, I believe that would help. Though, there is clear improvement during the last year of slower-than-I-would like treatment.
Posts: 2557 | From home | Registered: Aug 2006
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posted
I have had Lyme for 35 years. I have had bad flares in the past that were bad enough I couldn't work, but they resolved themselves.
About 4 years ago I got sick and progressively got worse. By last December, I was about 15% of normal.
Symptoms not in order of severity: night sweats, heart palpitations, air hunger, extreme fatigue, low stamina, weight loss, diarrhea, food sensitivities, joint pain, muscle aches, insomnia, hair loss, skin rashes (mainly on scalp), weakness, dizziness, unsteadiness in walking, disorientation, get lost while driving, trouble remembering words, poor short term memory.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
sixgoofy did your llmd treat coinfections along with lymne, or seperately? jenin
Posts: 455 | From Maryland | Registered: Jul 2007
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Doxy 200mg 2x a day Biaxin 500mg 2x a day Tindimax 500mg 2x a day Bactrim DS 2x a day Diflucan 150mg 1 a day Mepron 1 teaspoon 2x a day
I throw up every couple of weeks. Posts: 310 | From TN | Registered: Jan 2007
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I would totally agree with going slow, I did high dosages for 10 months and was very unwell physically and mentally. I have now been under a differt LLMD that takes it slow and I can honestly say in the short time that I have been with him I have improved beyond what I could image. I was housebound for 6 years but in the last 2 weeks I have actually been out of the house, had a couple of meals out and am astounded at my progress - baby steps but definatly progress.
So yes the turtle does win the race over the hare!!!!!
posted
But Slow and steady doesn't always win the race... I beliexe you do in fact need a certain threshold concentration of abx; this is true for any disease-- you know haw they always stress that you should finish your course of abx, say, for a strep infection, even if you think you feel better. It is indeed very odd that they don't do the same for lyme! In fact, from what I have seen and experienced, the threshold concentration needed for Lyme is in many cases somewhat higher than that need for other infections. Apparently there is very much variation in the necessary concentration; that is why the duck brigade feels justified in perhaps killing or maiming a few people in order to save 'insurance' corpulations a bit of spare change. (By advocating a treatment that is often insufficient, especially when particularly dangerous coinfections are involved). DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Pulsing at higher dose of abx may satisfy both sides about going or fast?
However, at beginning, one may need to ramp up slowly to let the body have time to build up its ability to handle higher dose of abx.
Posts: 1078 | From Fairland | Registered: Apr 2006
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quote:Originally posted by Rianna: I would totally agree with going slow, I did high dosages for 10 months and was very unwell physically and mentally. I have now been under a differt LLMD that takes it slow and I can honestly say in the short time that I have been with him I have improved beyond what I could image. I was housebound for 6 years but in the last 2 weeks I have actually been out of the house, had a couple of meals out and am astounded at my progress - baby steps but definatly progress.
So yes the turtle does win the race over the hare!!!!!
Rianna
What are you taking and the dosages?
Posts: 310 | From TN | Registered: Jan 2007
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