Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
What's the longest you've been on Doxy for or heard others on it for?
What is the max dosage, any higher than 400 MG per day?
Any side effects of Doxy thus far?
Personally, I've been on it for over 8 months. Besides nausea on an empty stomach, it has increased ear ringing for me and that is now 24/7.
Without it I backslide and would be more disabled than I already am. I would be down to not being able to get up. I've read that Pamela Weintraub's husband had also taken Doxy and it was the only ABX that kept his symptoms in check.
Posts: 2087 | From NY | Registered: Oct 2011
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glm1111
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posted
The combo of doxy (kills baby filarial worms) and Ivermectin has been successful for some. I wasn't on doxy long term because I couldn't tolerate it. I am sure others will come along with their experiences.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Doxy was definitely the best antibiotic for me.
I was on it off and on for 3 years, with other abx in between. I usually took it all winter plus part of fall and spring.
Most of the time I took it with plaquenil.
It reduced my excrutiating neck, head, shoulder pain from a 10 to about a 4 (on a 0-10 pain scale).
-------------------- 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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annxyzz
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posted
About two years and helped a little . Pain got better but still felt sick. ABX have not helped me much at all .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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annxyzz
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posted
I agree with Gael - add the ivermectin as Dr Eva Sapi has said is working for some people .
Doxy probably works ok if diagnosed early . Unfortunately many of us had years with CFIDS DX before correct diagnosis .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Doxy melted away so many unbearable symptoms for me at first.
Now it feels like I am backsliding very slowly and that feeling of something is about to get blocked in my head. Signs of a stroke I believe are gradually coming back.
I tried Ivermectin and herxed with first try, thereafter only eye disturbances the morning after taking it. My liver enzymes went up for the first time and so I dropped Ivermectin for now.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
I was on Doxy for over a year. After that I seemed to plateau and backslide. I had to shift my ABX combo which seemed to give my treatment some momentum.
Posts: 274 | From United States | Registered: Feb 2012
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Lymedin2010
Frequent Contributor (1K+ posts)
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posted
Problem for me is nothing that I've taken so far works. I am not asking for much, only to eliminate the feeling like there is a blockage in my head, that comes out of nowhere sometimes. Truly does feel like an impending stroke & can quickly escalate to other symptoms at its worst.
Maybe Mino or Tetracycline next?
Posts: 2087 | From NY | Registered: Oct 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I don't see any antimalarials on your list, and I know of others who mention head pressure or odd sensations who have Babesia...is it possible you have Babesia (tests are even more unreliable for Babs than for Lyme)??
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Maybe hit the infections with more antiparasitic herbs? I ended up combining several cleanses and adding higher dose salt/c, ramping up slowly. Warm water enemas also helped to move dying parasites and other toxins out of the colon.
Herbs might be easier on your liver. For me, persistence and increasing herbs, cloves, enzymes and salt/c according to how I tolerated worked for me.
Sorry you are suffering.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Then I had to go off it due to severe sun reaction and switched to Ciprofloxin.
I just didn't burn, my skin sloughed off.
It was very painful and left me with pigmented spots on my face once it healed.
My doc rotated Doxy with Cipro till I went symptomless for two months.
Now I am taking Doxy QOD after being on 100 mg daily for two months over the summer.
It seems to be the best prophylaxis for the chronic neuritis problems I have. No herxing but the Doxy seems to relieve the pain and symptoms of neuritis faster than anything else, possibly due to it's anti-inflammatory properties as well as it's antibiotic.
I had to cut it back to QOD when I started to sunburn easily.
Although it's a juggling act, it's still my antibiotic of choice. I've tried Cipro but haven't gotten the great results I have with Doxy.
-------------------- Why don't they make Front Line for humans? Think about it! Posts: 78 | From North Eastern Missouri | Registered: Oct 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i have been back on it cuz an eye doc says i have eye infection that it will help. i alwwys feel better on it...but lately if i forget it my sx come back fast and bigtime...i suspect it is putting bugs in cyst form and i dont have sx...but as soon as i stop it they come out to get me
i dont like this but at this point i need to be as good as i can be cuz my life is going crazy...so i am doing it. i hope to get more organized and back on buhners herbs...they really make me feel best
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
I had taken Mepron from the very start of being sick for 4 months & only got worst. �It was IV Rocephin for over 3 months, Mepron & Biaxin. �I was getting worst and worst each week and each week a new symptom.
Finally things melted away mostly with Doxy & Biaxin? �Take Biaxin away for a week and a half and big time shortness of breath. �So what is Doxy & Biaxin hitting? �My suspicion is it is putting BB into cyst mode and I am able to have quick relief, within. 2-3 weeks. �Doxy might be working on Filarial worms too? �Biaxin is holding back Babs or Bart, but still far from a cure.
Then I switched to Amoxi, Biaxin , Probenecid, and Rulide. �Slightly slid back, but manageable and I was hoping it was a herx. � I take Rulide out after 1 month & keep others for over 2 weeks and whamo. �I get worst by the day. �I can feel my blood getting thicker, can't cross my legs without major head and neck pressures. �
As soon as I sit my head and neck pressures increase. � I can't cross my arms or legs when sleeping due to pressure and numbness. �The bottom of my feet burn when I stand and the sides of my stomach burn when I sleep. �All these symptoms literally get worst with each passing day.
I add Doxy back in & get slightly elevated head and neck pressure. �I feel as if something is scramming and vibrating in my head. �As if BB is running for cover by day 3 on Doxy, thereafter a quietness.
In the forthcoming days the symptoms I describe above melt away in the same reverse order of intensity. �The first round of this combo took away all the symptoms, with this second round I get migrating symptoms, but much bearable than without the ABX's. �So what can Doxy be holding back from exploding?
With Doxy and Biaxin and less impending symptoms, I added Salt C (SC), and pulse Ivermectin & Artemisinin. �Within 2-3 weeks I had so much twitching and vibrations/tremors. �Take it away for over a week and tremors are still with me, but by only 15% of what it was without & which i never had to this degree ever before. �
I attribute this to the Salt C & not the Ivermectin or Art. �It is as if the critters were unhappy and crept up on the neurons to try to escape the Salt C. �I added Rifampin for a week and slid back with the stroke/aneurism feeling like symptoms, which is the worst of it all. �I think Rifampin caused Doxy and Biaxin to be less effective, as stated in the drug interaction.
Posts: 2087 | From NY | Registered: Oct 2011
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glm1111
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posted
Parasites will run for cover when attacked with salt/c because it puts them into osmotic shock (dehydrates them)and they can't stand it.
Much like when you put salt on an earthworm and it shrivels up. The vibrations and tremors are from the parasites.
Go slow with the salt/c and stop when the herxing gets too severe. Then continue at a lower dose when you start it again, so the herxing isn't as bad.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
huh-well i just found an unused pack of parastroy...it will be easy to add that...when i am more organized i hope to realluy go after parasites
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Doxy for years and years; Doxy plus Tindamax is my best combo; 2 years with Dr. H. in NY trying different combos. and still Doxy plus Tindamax was the best for me. How long .... well, I have never fully "recovered" so I will just say years and years and years and years.
A friend doing her own research has found some interesting info where low dose Doxy is simply used daily for may chronic illnesses and this is something my current doc has been discussing with me - not as a "cure" but as an ongoing treatment, with full knowledge that that low dose does not kill anything but simply keeps the something at bay, suppressed, quiescent, hence allowing us to function with less fatigue/pain/symptoms.
Interesting thought for those of us who do not get better after so many years of first not getting treatment & then despite getting the Dr. H. type of mega-treatment.
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Thanks for the input, so 8-9 months with Doxy is nothing with me compared to others.
Gael is so right.
So all this time with ABX and then when I added Ivermectin, I herxed, but not for long. Doxy and Biaxin made everything sill and calm, far from cured. Early on it seemed like a cure, but the parasites must have slowly spread .
When I added wormwood and then Salt C I herxed again. Started Colloidal Silver and I herxed again and the vibrations started again. Added Salt C to Colloidal and tremors were that much more and the twitches started like crazy everywhere.
I can feel them moving and squirming all around. I will be hitting parasites big time now, just gotta watch the liver.
Right now I don't herx on Salt C either or colloidal silver and I wanna herx badly.
Gael, do you really think that Salt C and antiparasitics hits the brain and crosses the BBB? How certain we're you that they were in your brain as well?
Did you have any of the same sensations in you head as I have:
-stabbing pain like a knife is going through to your brain and it lasts for a few seconds.
-feeling like something is vibrating and running for cover in your brain when hitting with a good ABX (like Doxy)
-brain fog that comes out of nowhere & stiff neck accompanying this
Posts: 2087 | From NY | Registered: Oct 2011
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posted
Doxy plus Biaxin plus plaquinil worked best for me.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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