posted
I have been on Doxy for 12 days and there has been no change. Should there have been? I don't know.Dr. said he wanted to see if my numbness goes away. Some people told me I should not be taking Doxy by itself or it could cause Lyme cyst. So I researched and bought grapefruit seed extract. How much should I take? I want to start treating myself since I get no guidance from my LLMD. I've decided to go to another llmd but I have not heard back from them yet it could take a few months so I don't know what to do in the meantime.
Posts: 54 | From catskills NY | Registered: Jun 2008
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Are you seeing a doctor recommended by a Lyme patient? What dose of Doxy are you taking? It needs to be in the treatment range for Lyme. Sometimes it can take three to four weeks before you herx, and not everyone does.
There are important tips about taking Doxy. Do not have any dairy, magnesium, or iron within two hours of taking it or it will not be absorbed properly. If you did not know this and had dairy, it would not be working properly.
If it makes you nauseous, eat something substantial and non-dairy before taking it. Do not lay down for at least an hour after taking it or you can ulcerate your esophagus. This is very painful! Drink a full glass of water when you take it for the same reason.
Posts: 4681 | Registered: Oct 2000
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posted
Sammi, I did not know about the not laying down,and yes I know about the dairy. I am taking 200 mg 2x/per day Llmd was recommended to me but I am not happy with his not treating me.
Posts: 54 | From catskills NY | Registered: Jun 2008
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
mariana, you are taking a dose recommend for Lyme which is good. Hopefully you will hear back from the other doctor soon, since you are not happy with your current one.
You may already know this, but I forgot to also list that Doxy can cause extreme sun-sensitivity. You can get sunburned in minutes even when wearing sunscreen. When I took it, my knuckles got burned from the sun coming into the car when I was driving! Be careful.
Posts: 4681 | Registered: Oct 2000
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'Kete-tracker
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Member # 17189
posted
He may want you on doxycycline by itself to start, & will add something like Flagyl later, after you've gotten into the routine of 200mg b.i.d., which is medical-speak for what you're on.
If your doc IS considered an LLMD, give him a chance. You're not even 1/2-way into your 1st month of treatment! 12 days usually isn't enough time to see an improvement. You often won't see a 'jump' upward, overall, until the 5th week. It's a month-to-month thing with borrelia Burgdorferi. It doesn't get cleared out quickly.
Oh &, yes, stay out'a the sun as best you can, now that the sun angle is getting higher. Even 10 or 15 minutes direct exposure can cause problems.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
Oh no. I understand that I just started on the doxy. The problem I am having with my Dr.is that I've been seeing him for a year and this is the first time I got any antibiotics. Thanks for letting me know abt the sun sammi and kete.
Posts: 54 | From catskills NY | Registered: Jun 2008
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quote:Originally posted by mariana: The problem I am having with my Dr.is that I've been seeing him for a year and this is the first time I got any antibiotics.
- Find a new doctor ASAP!! What is his problem???
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Idk. Can you believe he thought I had Ms? He probably still doesn't think I have Lyme so I am not being treated. What upsets me is that I lost a year in which I got sicker. I am happy I came here and people finally opened my eyes to the fact that this Dr.is not doing the right thing. This is why I was asking abt the grapefruit seed extract and how much to take, because I have no idea what I am doing.
Posts: 54 | From catskills NY | Registered: Jun 2008
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
I want to chime in here, after reviewing your posts again, with some observations. If this IS "the first time [you've] got any antibiotics" for what your doctor is now diagnosing as Lyme, 2 things to mention:
1) 200 mg twice a day is a HECK of a lot to start on. The resulting [true] "herx" (Jarsch-Herxheimer reaction) that you would/ should have experienced... oh, maybe 18 to 24 hours after you started it, *should* have had you "on the floor", suffering from nausea, exhaustion & various other symptoms that us Lymies know is a part of "hitting the dashboard". It happens as the doxycycline "puts the brakes" on the systemic Lyme infection that's been running rampant, & the body has to deal with all the flack/ fallout of lysed (dead) borrelia.
If it's your 1st Lyme fighting abx protocol & you HAVEN'T experienced this major flare, I would begin to doubt you have Lyme at all... or atleast that it's currently your primary health issue.
2) Doxycycline is almost ALWAYS begun at a lower level- for the person of average weight- & is built up to what you say you are currently taking after a few days to a couple weeks. Atleast this is what any self-respecting LLMD would do.
Yup... I think you need another doc's opinion! And preferrably one who's had lots of experience treating Lyme.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
Mariana, I started Doxy almost the exact same day you did, but I started at a lower dose. I too am not feeling much of anything yet. I asked about herxing and my doc said when he had Lyme he never got them. Then he has patients who have them every day. I think it varies for everyone. I too, however, wonder when I'll feel different, worse or better. Today was Day 15 for me.
Posts: 90 | From Pennsylvania | Registered: Oct 2012
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posted
I am more confused than ever. Some people say 400 mg/day is not enough for a herx. The only other time I got Doxy was 5 yrs ago when i got the rash , but after 10 days i got hives all over and Dr. told me to stop taking it. I am now on day 17, and still nothing.I did get horrible back pain where i couldn't move for 2 days.(over the weekend)it is better now but my bones in hands and feet also hurt, but I dont think this has anything to do with herx or doxy.
Posts: 54 | From catskills NY | Registered: Jun 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
mariana, when I finally started treating lyme, they gave me doxy for 30 days. I never herxed. And, I had been sick for at least 10 years.
Everyone is different. That's what you have to remember. We don't all react the same to doxy or any other medication.
You can't doubt your diagnosis because you didn't get a horrible herx from doxy. It just doesn't work like that. Some people never herx at all--lucky ones.
Also, your horrible back pain and pain in bones of hands and feet could be your herx. A herx symptom can be any possible lyme symptom. So, these fit the bill.
I remember when treating lyme properly with the lyme doc who got me well, I got a terrible pain in one spot of one finger. By the next monthly appointment, it was gone and forgotten. But, the doctor had made a note of it and then made a note that it was gone. So, that could have been my herx on a certain med.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Mariana I am seeing an LLMD. He has put me on the same dose of Doxy 200/2xday. I am also on Flagyl. Flagyl is a cyst-buster and crosses the brain blood barrier for neuro-lyme, which I have. It is recommended by Lyme Drs to use both together like Kete said.
I asked my LLMD about the 200 2x vs the 200 3x as is printed in the burrascano guide. He mentioned that 200 is a high dose and that if you are on it long-time then you have to watch for c-diff and other complications.
I have not had the "herx" reaction at all. I can't tell the difference betw my symptoms and what might be a herx. That is not a bad thing. My LLMD was explaining that if I am on the probiotics as Rx, the Magnesiuma and other supps as directed, then a herx can be minimized. He mentioned that they are learning so much more about better txs for Lyme since the Burr guide came out. It's still very close to the guide, but some new adjustments are proving better overall.
For example, I am pulsing 4 days Doxy w 3 days Flagyl. It gives the body time to work with the meds w/o the harsh side effects.
I've been on 6 weeks so far and although I still have sxs, I do believe things are improving. I have more "memory victories" and more "good productive days" than I've had for 2 years.
I don't expect miracles, after all, my body has been invaded for at least 2 years, so I can handle slow improvement to avoid "laying on the floor nausious."
It took 3 wks at least for me to start feeling "lighter" and seeing minor improvements though.
My advice echos Lymetoo. If this dude is not an LLMD, then Find one asap. If he's not an LLMD, then he does NOT know what he's doing. He's toying with your system with bare generic information.
Also I would double check on the Grapefruit seed thing. My LLMD was very specific about NOT eating grapefruit while on my regimen. It kills the "good bacteria" in your stomach which you need to keep up with probiotics and a good greek yogurt if possible. Again, 2-3 hrs apart from the antibiotic.
"because I have no idea what I am doing." It's true we are not Drs on here, but I gotta tell ya. All the outpouring of info on here gave me alot to work with and research bc we were all in this same boat at the beginning.
Remember though, that EACH PATIENT IS DIFFERENT, just like snowflakes and just like fingerprints. Lyme n Co will act on each body differently. But with this forum, you can see a whole pool of possible outcomes so that you can recognize how lyme affects you.
Only you and your LLMD can forge your personal path to better health.
Read, read, read, research, research, research, and ask LOTS and LOTS of questions.
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
200 mg 2x per day to start seems high. I see a top doc and I'm on 100mg 2x a day. I also cannot handle 3 GSE twice per day (herx). I would start lower if I were you (work up to it). We are all different.
As far as the horrible back pain, it's common with lyme. I've noticed that if I have any calcium too close (2 hrs) with doxy that my pain comes back. It's best to limit or eliminate dairy while on this med. You can get calcium from veggies, broccoli, etc (better this way). Also, if you took any minerals, multi vitamins, etc, they can weaken the doxy and bring on the pain.
Don't worry about herxing. Some people don't herx at all (the lucky ones). Patients can still improve even if they are not herxing. You need at least six weeks of abx in order to see when you herx anyway. Keeping a daily journal is quite helpful (what you eat, supplements, and how you feel).
I would change docs too. You can go to seeking a dr, or to www.lymediseaseassociation.org and they will email some LLMDs. Make sure you choose one who follows ILADs guidelines (very important). Ask to get on their cancellation list (you will get in faster).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Mariana, make sure you take lots of probiotics. My first lyme doc only put me on culturelle and another probiotic (can't remember). It wasn't nearly enough and I got horrible yeast and UTI symptoms. Once you get yeast, you will have to battle it until you get a handle on it. It took me over a year to do this.
I should have been on at least 100 billion cultures a day, minimum. Many people are on 400 billion per day. That's what I take now, but I had to work up to it slowly. Also, take some s.boulardii so you don't get C-diff.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Dr prescribed 200 mg twice daily for four days each week for me as my first treatment plan. I take Flagyl and Diflican on the weekends. I did herx about week three - my bad herxes affect my crotch and I can't sit down. also added Biaxin last month.
I have since added magnesium and Vitamin C with my drs permission. This seems to have calmed down the herxes. Although I am herxing today with the crotch pain.
Generally, my hands, feet, calves and knees seem to be my new major problem. Cramping, burning, just plain hurting. So yes you hand and back pain could be the doxy working.
Posts: 250 | From East Coast | Registered: Jan 2013
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