I have a new Lyme Disease infection and am three weeks in.
I am on doxycycline 100 mg. 2 x per day, but I know it doesn't really kill the bacteria.
I am out of the loop. I've done some research, but it's all conflicting/confusing.
I know that all of you are up on the latest research and treatments.
Can't get to a specialist right now and this is my second go around--so I know I really should be adding something to this mix (I think).
I have a Nurse Practitioner that "may" be able to give me a prescription to go with my doxy if I can get her some information.
I am close to a week out now from the very-much-dreaded replication stage.
And I know this should be posted in Medical Questions, but I'm hoping some members are hanging around and can answer me back soon.
Can anyone help?
Thanks so much! Posts: 12 | From Alabama | Registered: Jun 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Welcome, though sorry for why you are here. Also sorry for all the information you will have to sort through. And, this is just a start. Lyme is very, very complex. And, most often, it's never just lyme.
But, get your cup of green tea, take a few deep breaths, put on nice music and just take it one step at a time. Rest eyes, brain or body when you need to.
First: that dose of doxycyline is too low. It should be double that. At just 200 mg a day, that is only bacterial static, not bacterialcidal (sp?) Meaning it may knock it down some but it won't be at its killing strength.
There are antibiotics to go along with doxycycline, of course. But there is a drug of a different category, an anti-protozoa drug I suggest exploring / asking the NP about: Flagyl - or better, something that works in similar fashion with less risks,
something to address the Cystic Form of the lyme spirochete.
With most antibiotics, while some lyme (Bb) spirochetes are killed off, some also go into the protective cystic form to evade the antibiotics. The cystic form can come out later and bring even more spirochetes with it.
Antibiotics do nothing against the cystic form. A drug like flagyl - or similar - is intended to work through that cystic outer coating so that the antibiotics can better work.
Without this, chronic lyme is more likely to occur.
You should also be assessed for Babesia since it is not treatable with antibiotics, again, a difference kind of drug combo is needed.
Be sure to STAY OUT OF THE SUN, even in your car, you can get very bad "doxy sunburn"
LIVER SUPPORT is essential. Be sure you have that on board.
Good luck. Although I've tossed in more things to consider & lyme is always more complex than we can believe . . . glad you are addressing this fairly early on. Take care. -
[ 06-08-2018, 03:13 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Misc. yet important considerations:
Doxycycline cautions:
1. Even autumn or winter sun, even early morning or late afternoon sun can burn. "Doxy burns" can be very rough.
avoid sunlight on your skin (even "bounced" sun - or through a window) even for weeks after stopping doxycycline if you go onto a different antibiotic.
2. Food with doxy is vital to protect stomach. But no dairy. Do not take with any multi minerals, either. The food minerals will lessen the medicine level and make it not as effective.
A substantial meal, in the middle with some food before and after the doxycycline really matters.
Protect stomach but do not take a PPI - proton pump inhibitor (they have some negative effects). take doxy with a substantial snack or meal - in the middle so you've got some food before and after
Avoiding gluten can help with the stomach, too.
3. keep torso as close to upright as possible for at least 30 minutes after doxycycline taken so as to help protect esophagus from the irritation it can cause if lying down.
Depending upon the angle of the particular chair, the most upright position of a recliner MIGHT be okay if you must rest your head or put your feet up, just don't slink down.
PROTECT EARS / HEARING - when taking certain Rx, the ears need protection. Ear plugs with a hair dryer . . . decibel rated muffs with a blender, vacuum, lawn equipment, etc.
Careful around loud music and best to avoid in the ear pods. There is a link in the Liver Support thread that explains why.
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You mention getting information to a Nurse Practitioner. Here's a start.
For anyone new to lyme or other tick-borne disease, these are among the top patient education, advocacy and public awareness organizations. What patients call a "LLMD" a lyme literate medical doctor and why that matters so much:
I forgot Flagyl. I couldn't remember the name (Lyme Brain, lol).
Do you have that dosage anywhere?
I did print out the guidelines from Dr. B. for the NP, because I'd already had CNS & heart symptoms, but she said she could only go by CDC guidelines--the max they say is 100 m.g. on doxycycline.
I will ask her about the Flagyl. And see if she can ask the doctor who works with them about doubling my doxy script. (She'll never go for the 600 m.g. She's already said that.)
I just really want to kill as much of this monster as possible before it doubles on me.
From waxing and waning symptoms to a tidal wave, doubling in intensity every day, this horrendous disease jumped on me even faster this time. And it was pretty awful terrible horrific devastating agonizing the first time.
I would have thought I had some antibodies...
ALL your information is great!
I REALLY appreciate it!
Posts: 12 | From Alabama | Registered: Jun 2018
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posted
I was not privy to some of the advice here and suffered for a while. Wish I had something like flgnl to help out. Sounds like you are getting good advice. I can comment on my experience.
I did not get the relief I needed from Oral antibiotics, and required IV Rocephin to knock it down a bit. When things got bad, I took a couple shots of Rocephin until I could get an approval for IV version. It is painful, but provided relief when desperate.
Also, Doxy turned my teeth grey after a couple months, beware. However, I was able to take it with Amox.
Omiceph helped out a lot, but beware, it could cause heart issues. Omniceph was and is my goto oral drug. I could take it for months, and just backed off a bit when I felt heart issues. For me, it was not really the dosage as much as the duration that seemed to help me.
Bactrim caused relapses for me; avoid it. However, maybe it caused relapses because it is a biopfilm buster? Not sure, but it made tings worse when I did not have another antibiotic to counter the relapse effects.
I liked Omniceph, second only to IV Rocephin. but probably also need something like Flgnl; as I was never 100% cured with anti-biotics.
When things go south, the right mix helps.
Beware, these antibiotics will provide much releif and necessary to survive, but can give you a false sense of being cured. I wish I did not hesitate on the IV option, and augmented it with flagnl.
Note that i am not a doctor, just sharing my experience.
Posts: 22 | From wv | Registered: Mar 2018
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I appreciate your comments, information and guidance.
And thanks, Lymetoo - for putting me where I should have started in the first place, lol.
And thanks again, Keebler - for all of your very valuable assistance.
HOPES for HEALING for ALL! Posts: 12 | From Alabama | Registered: Jun 2018
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Purchase the book:
“Why Can’t I Get Better?” Solving the Mystery of Chronic Lyme & Chronic Disease
Author: THE dr H
This top LLMD wrote the book so that every patient can understand tick born diseases & other conditions that often prevent people from getting well.
The book clearly plots out numerous treatment plans for all these conditions. It’s a great way to quickly & easily understand most everything.
Please share this book (or buy a copy) for your treating physician or NP, it will enable them to adequately begin to treat your early Lyme.
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
That LLMD did write another book, it would be helpful if you struggle to get better. Or if your doc discovers a chronic infection.
There is a wealth of information on this LLMD’s Facebook page.
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
For safety sake the forum asks that everyone be under the care of a knowledgeable & caring physician.
They should properly evaluate, diagnose, & prescribe treatment plans.
So we can point you to written resources, refer you to a new doctor if needed, & we’ll continue to be here for you to help until you get well!
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
FYI: be careful with flagyl, if you have any history of neuropathy or neurological symptoms flagyl can cause harm.
I’ve never taken flagyl for that reason. That book gives you alternatives.
With the severity of your symptoms including cardiac, sounds like you might have more than just Lyme. Please consider testing for coinfections. If you have a coinfection you have to treat it or else you’ never beat Lyme
Posts: 5237 | From here | Registered: Nov 2007
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