seekhelp
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Member # 15067
posted
I have been on Doxy for 11 days now. I am taking between 200-400 mg daily. I just cannot seem to tolerate 300-400 mg w/o being super shaky. 200 mg I seem to be OK with. Once I hit higher doses, I feel like I'm on speed or something.
I have trouble seeing straight, feel off balance, literally feel like I'm trembling, but not sure if it's noticeable to outsiders. I have been too weak to walk any distances most days. Maybe it's a herx. How do you know if the benefits (if any) outweight the price you pay?
I have been less functional since on Doxy. I didn't feel this way before on Biaxin/Ceftin, Malarone, or Clindaymycin. I'm debating if this drug is worth it for me.
I may call my LLMD and ask. I'm not sure if it's normal. It costs money to ask questions so I think before doing it. 1
Any thoughts? I'm taking a detox tea (recommended by Nenet), milk thistle, chlorella, activated charcoal, NAC, etc. Doesn't seem to make a dent in my issues.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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adamm
Unregistered
posted
The tetracyclines can cause pseudotumor cerebri (increased intracranial pressure), though I'm not familiar enough with its symptomatology to tell you how indicative what you're going through is of that.
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If you can't take the dose that is therapeutic for Lyme treatment, I'd take the other drugs you can handle. I had the same problem with Zithromax, couldn't take the full dose. My LLMD told me that taking a partial dose can build resistance, so first tried pulsing (full dose for three days per week) so that the full dose did make it into my system .... then when that didn't work out, we switched meds all together.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I have been on 400 mg of Doxy for 3 weeks now and honestly I cant even tell I am on it. I havent had any problems with it at all which makes me wonder if I need something else.
Why did they change your meds? Were the others not working or did they want to alternate?
Can you send them an email or do you have to call and get charged?
I hope you start feeling better! I am sorry that I cannot offer more information.
Posts: 171 | From the land of oz | Registered: Feb 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Adamm, my LLMD's office said they've never heard of any patients getting pseudotumor cerebi at all. I called and asked last week. They made it sound impossible honestly. Hopefully, they are right.
The funny thing is I had no problem handing full dose Azithromycin, Ceftin, Biaxin, etc. I think Doxy isn't good for me. Thse were all Rxed by another LLMD or ID doc. I'm starting a new LLMDs protocol, hence the change to Doxy. Zithromax standalone has been useless for me unfortunately.
I'll probably call my LLMD. It's a bummer I can't handle Doxy.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Seekhelp,
Ironically, doxycycline was the "feel good" medicine for me. I couldn't tolerate the zith or malerone.
IMO, the doxy is hitting something. Try smaller doses. I started at 100mg twice daily for several months. It worked on my symptoms better than anything I had tried.
However, you can't be on it forever because I think it makes the spirochetes go cystic as does most of these abx. Your doc will put you on Flagyl next. (Insist on Brand not generic)
Good luck. CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
My LLMD told me to start at 100 mg of doxy for a few days, then increase by 100 mg every few days as tolerated. He said if I tried to take 400 mg on the first day, I would feel bad.
I don't know if he was talking about stomach problems or herxing when he said that.
Posts: 984 | From US | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
The stomach issues I can live with to some degree. The anxiety bothers me so much. I don't like feeling anxious 24/7 on the medicine. It seems like an odd side effect considering I didn't have it like this w/other Abx.
As others said, I don't want the Lyme to become Abx-resistant (if that's possible).
I put a call into my office to see what they think. Even when I go to pick something up, I feel like it's hard because I am shaky. Strange feeling!! I recall Mandy in UOS doing that too. I'm not sure if that was acting (some of it) or real footage. Of course, I'm not saying she didn't go through all for real, but I mean the specific symptoms I saw in the movie.
Hey the IDSA says 200 mg daily is enough. I'm only 10 days away from cure!! I can't wait. 21 days and I should get rid of these buggers according to Wormser.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I think the shakiness is a sign of neurologic herxing, and I would continue taking it myself. If you can try to tolerate it for at least a week or two, do so and see if you reach any point later during that period where the symptoms abate. If they do, then I think it would have been a herx. Just my opinion.
Also, once I got to 400mg and it seemed to be doing nothing, I raised the dose to 600mg/day and started herxing again.
600mg can be hard on the GI tract, so I have to be sure to take it with food.
Posts: 975 | From California | Registered: Apr 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I have always taken my doxy with food. I didn't bother trying otherwise given the stomach issues I already have.
I wish I knew if it was truly neurological herxing. If a term exists as that. Lyme treatment is so tough because it's nothing but educated guesses. No one has a clue what will happen to anyone.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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sutherngrl
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posted
I would try taking it longer, because if its a herx, it will pass. I think you should give it another few weeks.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm going to. My LLMD called and said stick at the dose I can handle (200 mg daily). They said increasing doesn't make a difference for recovery. I'm going to pulse dosages as recommended by a few here.
I guess I better get used to discomfort because Flagyl may knock the #### out of me and I will be wishing it was only 'Doxy'. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I should've mentioned I've been bumping Olive Leaf Extract too - 500 mg 3x daily (18% concentration). I'm going to stop the OLE for a while to see how the Doxy is by itself.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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mojo
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Member # 9309
posted
I'm guessing you are herxing - esp. with the OLE that you're doing. I think stopping the OLE until you can see how you do with Doxy is an excellent idea.
I started my initial treatment with 400 mg of Doxy and herxed quite a bit for several months (I wasn't detoxing very well at that time, though).
My sister only used 300 mg of Doxy the entire time she was on it and she did well (herxed but got better, too).
Keep us posted!
Posts: 1761 | From USA | Registered: May 2006
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posted
My LLMD has me on 200 mgs daily for the last 6 yrs. His theory is you can fry and egg fast or fry an egg slow, either way it gets done in the end.
Sounds like you got the right answer from your LLMD, that's what I was going to write until I saw you had been told to back it down.
My doxy is mixed w/Biaxin. One to break up the cyst form and the other to go in and do the killing.
Posts: 982 | From Florida | Registered: Feb 2002
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seekhelp
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Member # 15067
posted
I think my body's detoxing abilities are horrid, but no LLMD has tested to confirm. All I've seen say you can do nothing about it so don't waste $$$ testing.
I cannot believe how heavy my legs have been on the Doxy. It feels like my oxygen to my muscles is getting lower. Crazy.
I'm glad to hear your sister had success on it!
I do wish I had a second drug to handle another form of Lyme. I'm not sure if I could handle it, but I'd rather hit two forms at once.
Curly, are you in remission or close to it? Six years is a long time. I won't have an egg, stove, or house to live in if I don't get better in 12 months or so. Low and slow may be my option, but I'm weighing the consequences either way. The problem is I didn't start treatment recently. I spent 6 months doing treatment that didn't do a ton with another LLMD and went 11 months undiagnosed and have been on disability the whole time. Depressing.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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jt345
Unregistered
posted
For me Doxy really gets in my brain. When I start too herx I back off abit and slowly get back to 400mgs per day.
I hate to ,but I know I will need to start flagyl,But it breaks up the cysts. I get very down while on flagyl, but these are the two orals that have worked in the past.
This summer I will try biaxian,and interchange flagyl,so I don't burn so bad.
If I were You I would give it alittle more time. I do beleive this true, the turtle wins this race not the rabit.
I have had this for a long time. I think I will take it to the grave with me. But I will not give up. I refuse to leave Nan(my Wife) knowing I did not try too live.
We are broken people living in a broken world. All we can do is too try. Most of all try too help eachother. I find that the best medicine for Me.
Be as well as you can be today.
( I have one dream ,one thing I want too do before I can no longer tolerate travel. That is too see the great Divide,and play guitar,with a good friend I have not seen in all most 30 years.)
mojo
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Member # 9309
posted
Seek:
I forgot to mention - and I learned this the hard way - don't lay down for at least one hour after taking the Doxy. I ulcerated my stomach and esophogus while taking Doxy by doing this and it is an extremely painful condition.
Posts: 1761 | From USA | Registered: May 2006
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feelfit
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Member # 12770
posted
I think that you have some stuff in your CNS as well as your muscles(babesia). I feel quite similar on levaquin. Like i am a major drug addict.
My body feels heavy....just out of it.....that being said, doxy hits a lot of different bugs and I think that you stick with it at doses that are tolerable to you 200 mg? you will still see benefits.
As long as you are having reactions, it is hitting something.
Just my 2, Feelfit
PS OLE made me herx madly all by itself before i was dx'ed
Posts: 3975 | From usa | Registered: Aug 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm going to ride it out Feelfit. Zithromax was doing little. At least this 'seems' to be hitting something. I keep hoping the fog will lift one day and I'll feel a difference. Without addressing these muscle problems, I'm useless though. That is top priority to function.
I personally think docs should be hitting this first and foremost, but I'm no physician. I'll follow my protocol and see where it takes me. I must admit I wish I could forego Flagyl abd move to Clindamycin / Quinine first. I need more confirmation Babs can be treated/beat.
I have zero doubt OLE causes herxes. It heats my body up quickly. It's a weird feeling. Exactly what it's doing, I'm not sure. Interesting supplement. I recall Bea saying to take 9 500 mg tablets daily. That may do a real number on me!
I do stay upright for 1-2 hrs after the Doxy. After the horror stories I read here, I'm careful.
Every day I wish I did a Fry blood smear, but I don't have the $$$ to spend now and my LLMD doesn't seem to be big on testing. I'm not sure he'd even endorse this test. Maybe I'll see 4 months later how I'm doing and discuss;
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I just can't take this with the Doxy anymore and am now concerned it caused some permanent damage. I didn't take it last night or this afternoon. I still am having some head pressure, but most concerning is I now have POTS-like symptoms. If I get up from a lying forward or leaning position, my legs get extremely heavy and I have a passing out type of feeling.
I didn't have this before the Doxy at all. I regret taking this drug. I'm not sure at this point if a generic office response such as 'we don't see it often' is acceptable. My nose has been pouring clear liquid 24/7. Yesterday, I got so weak I almost went down.
These were none of my original symptoms. I get so tired of blaming meds on everything. Am I overracting or should I be taking this seriously? This will be my THIRD call to my LLMD. How frustrating when it's about the same topic.
The progression started from moderate headache 2 days into Doxy. That went away. Head pressure began in day 5-6. It has been relentless since and now the POTS stuff.
I am thinking of one other issue. MY LLMD started me on testosterone cream. I have noticed the few days I took it, I get more dizzy and anxious too. There isn't an off chance a compounded T cream could cause issues. I'm taking 1/5 CC 2 x daily of 15% T-cream. See below:
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