posted
I have been on 200 mg daily of doxy for 5 weeks. It has been relatively smooth sailing except for severe chest pain 2 weeks in and then numbness on my right side for three days. Dr S said both were herx. I feel like my neuro symptoms(THANK GOD) have improved. Physical stuff up and down day to day. I have been having on and off gallbladder pain until this week now it feels constant. I am wondering if doxy is working. The things I have read about people really getting sick after abx doesn't seem to have happened. Does this mean doxy isn't working? I was really sick before diagnosis, very thankful to be feeling a little better.Leary of what this could mean. Everyone keeps saying get ready for the fight and its a long haul...could it really be this smooth? Or do I need a new abx.
Posts: 41 | From Akron, Ohio | Registered: Jan 2010
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posted
I know am also wondering this... How were you diagnosed? Did you have a CDC positive blood test or any positive blood test? How many months did it take?
I have been on 1500mg of amox a day and just bumped up to 3000mg. I feel better than before the ABX but not 100% yet. I also never had a positive test of any kind.
Posts: 286 | From St. Louis | Registered: Dec 2009
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posted
Not a blatantly positive test. Igenex 2 bands ind. CDC one reactive band. My LLMD treats based on clinical diagnosis. I have been sick off and on more years than I care to remember. Very sick for the last year and half. I am thankful for the diagnosis...finally not something just in my head. I wish I knew more, I just don;t understand it all.
Posts: 41 | From Akron, Ohio | Registered: Jan 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
stickym that is a low dose. Your doc may be going low and slow for a while.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
stickym - I have been on Doxy for 3 weeks, started at 100 mg 2 X's a day and increased to 200 mg 2 X's a day after 1 1/2 weeks, have only had 2 herx type reactions on day 2 and day 22 both like having a bad flu and both only lasted one day.
I too wonder if I am just lucky so far with the detoxing and herxing.
I am switching to Azithromycin and Plaquenil on Saturday because I am worried about the sunburn on doxy and wonder if it will be as easy on a different antibiotic?
If I have any dramatic change after switching I will let you know.
Posts: 448 | From minnesota | Registered: Feb 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I was wondering the same thing, but now that i'm close my 4th month of treatment, I feel more comfortable with the process.
I was really sick before LLMD. 1st month, low dose Amoxy. I felt slightly better but still yuck. Nothing dramatic either way. I wondered if the abx was doing anything.
Then I paid attention and noticed that for the first 3 hours after taking meds, I felt worse (more fluish). (small herxing)
2nd month, Cipro & Plaquenil. First 3 weeks felt great, then more symptoms came back. I stopped the lemon water when I felt good (not smart).
The next 4 weeks, again yuck, esp. those 2 or 3 hours after taking meds. Starting lemon water again and it really made a difference. I was better able to cope w/ the symptoms.
I've come to the conclusion that the low dose meds are certainly helping but not forcing me to deal with big die offs. I'm herxing, but they're small and managable herxes, not big and overwhelming herxes.
And with a little help, my body must be able to detox pretty well, so far. I'm learning that detox is key.
It is slow going, but I'd rather go slow and be able to function then go fast and still be on the couch. No complaints here. --------------------------------------
Sick - the answer is... probiotics, probiotics, probiotics! I take Adult Formula CP-1 from www.customprobiotics.com
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Low and slow is my choice of treatment also. Just from what I have observed the outcome is about the same as those that treat aggressively.
Much of the medication when treating aggressively does not even get absorbed by the body; but taxes the liver. My doc says our body can only absorb a certain amount.
Also if you observe long enough you will see that treatment time is about the same for the low and slow treaters as it is for the aggressive. There are a few exceptions. But I know people that have done it both ways, and treatment time is very close to the same in duration.
That being said, we all must find what we feel works for us.
Stickymommy, 5 weeks is a very short time to be judging your progress!
Keep records for 6 months to a year, then you can go back and see what has improved during that time.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
To prevent yeast sick I take Nystatin 4 times a day but others take Diflucan.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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WildCondor
Unregistered
posted
200 mg is the wrong dose to treat Lyme disease, it should be over 300 mg/day. READ the GUIDELINES!!!! You do not want to be under treated! There should not be such a thing as "going slow" with this unless you have some inability to detox or the herxing is so severe you need to be on life support. Take the treatment, kill the Lyme.
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
There is no need to make yourself sicker than you already are and end up with ITP or worse.
Do what your doctor says.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I agree with Pinelady. Do what your doctor says.
Practicing physicians that treat lyme on a daily basis use protocols that they have observed that work.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I took doxycycline for the 90 days after I knew I had lyme disease. I read that 100 mg twice/day may not cross blood brain barrier and (or) achieve the MBC ( minimum bactericidal concentration for Lyme/Bb). So I started with 300 mg/day and then increased to 400mg/day to be sure I was reaching the right blood and tissue levels to make a difference. Doxy is near 100% absorbed from the GI system, Is well tolerated if taken with food (not dairy, not minerals). Causes wicked sunburn with many (not all) getting cool tingling of skin as a warning. It took me six weeks at that higher dose to be sure I was noticing an improvement and from there the next 6 weeks that improvement continued. At 12 weeks I felt I was 85% improved and decided to stop the doxy for a time. 12 weeks later I relapsed, restarted doxy for 6 wks and had almost no response at all, so I knew from shin and plantar symptoms and lack of response to previously helpful antibiotic, that I was dealing with co-infection eg Bartonella or something very much like Bartonella. The point is for me it is like peeling away the layers in an onion one layer at a time. I do think 3-400 mg /day would likely be more effective though as WC has noted.
Beachinit.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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posted
I have been on 400mg Doxy for 8 weeks now and have noticed the skin burn, only have to sit in the sun for a few minutes and i can feel it burn. Other than losing the bad neck aches i was getting im not sure much else is happening. How long would someone expect to be on this dose of doxy before seeing some improvement??
thanks
Posts: 65 | From Sussex UK | Registered: Apr 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Be patient and expect more benefit when on a higher dose. I went back on doxy/plaquenil 9 months into treatment.
I have been noticing very slow but steady improvement in my excruciating head and neck pain since end of Oct 2009.
It has taken almost 5 months of doxy (200 mg twice daily) to go from feeling like I had 3 vise grips around my head and neck, to feeling like I have 1 vise grip.
I can tell I am still improving but it is VERY slow. I am just thrilled that I am improving.
I love doxy all except for the sun burning. I opted to stay on it for as long as possible into the summer because it is helping. I am now 14 months into treatment.
I do not take diflucan or Nystatin. I eat sugar free, gluten free, soy free, dairy free and take lots of really good probiotics.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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