I'm new here and would like to pick some of the smart brains on this board. :-)
I'm dealing with a major lyme infection...was just diagnosed but have dealt with the symptoms for about 9 months now.
I'm SO sick and am currently being treated for it by my general practitioner temporarily before I see a LLMD in 2 weeks.
My question is...my general practitioner has me on 200mg of Doxycycline a day...100mg in morning, 200mg at night. I am so sick and just wondering if this is enough of a dose until I see the LLMD.
I think I'm herxing but it's hard to tell because I was so bad before I started this dose a couple days ago. Any thoughts?
I guess it just scares me how sick I am and I'm really concerned if I'm being treated enough right now.
I just don't want even 2 weeks to go by and somehow get worse. I'm sure this dose is better than nothing because I was going with nothing for months BUT I'm still concerned.
I'm a tall gal but skinny...5'10" and 150lbs. Thoughts?
I hope this post makes sense...my mind is SHOT from this infection.
Thanks! Carolyn
[ 05-07-2009, 10:46 AM: Message edited by: marriedchick ]
Posts: 41 | From New Jersey | Registered: May 2009
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hey Carolyn,
Do you mean that you are on 300mg daily? You say 200mg, but then say 100mg in morning 200mg at night.
Anyways, 300mg is the lowest dose that ILADS recommends. So you are ok there. Even with the 200 mg, I would say it will be ok until you see your LLMD in 2 weeks.
Good luck, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
posted
Well I guess it won't hurt me. I might try it tomorrow and see how I tolerate it. When people are given 300mg a day, do they take 100mg once and then 200mg or do they take 100mg in 3 separate doses? I wonder if it makes a difference in effectiveness.
Again...I understand no one here is responsible for my experience...just my little disclaimer. :-)
Thanks, Carolyn
Posts: 41 | From New Jersey | Registered: May 2009
| IP: Logged |
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
For now, stay on the 100mg twice a day as Rx'ed. You'll be herxing well enough at that level until you get in to see your LLMD (Hooray!) DONT expect to get better quickly after your protocol is "modified" by him/ her. You're in for the long haul- atleast a few months [of abx]. And, athough you Will get better, it's a tough battle for most.
Talk with the LLMD about diet, supplements you should be on (see Burrascano guidelines) & the Jarsch-Herxheimer reactions that you will no doubt be dealing with here & there for a while.
Not to Worry- You aren't going to get "worse"- in the sense of sicker with Lyme- now that you're under treatment, though you will have bad spells along the way.
Rest as Much as you can, take your "doxy" away from any dairy/ calcium & any other mineral supps by 2 hours- so it doesn't get "tied up"... and stay outa the sun. You'll burn easier when you're on a "cycline". Good Luck...& welcome to the Lymenet boards!
Posts: 1233 | From Dover, NH | Registered: Sep 2008
| IP: Logged |
posted
I started at 200 mg a day for about 2 weeks then up to 400 mg a day for a few months and now take 600 mg a day.
So my LLMD went slow. He did the same for my mom.
It's hard on the stomach so take it with food. I take it after breakfast, lunch and dinner. 2 pills each time.
On the lower dosage I did breakfast and dinner. Then my probiotics at bed time.
Best of luck!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
| IP: Logged |
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
lymetoo, She mentioned she'd been dealing w/ the symptoms for 9 mo.s but had only been recently Dxed, so it's most likely disseminated by now.
married, Your LLMD may very well double your dosing, at some point soon, based on your weight. He/she might also change your abx &/or add something, based on your specific circumstances.
A 2 week wait under these conditions can be greuling, I know. Hang in there. You're doing everything right for now. (Try a ginger tea or diet dark gingerale to help w/ any tummy issues)
P.S: Oral Doxy is typ dosed twice a day. IF one needs 300mg/day, then 200mg can be taken in the AM while 100mg is taken 12 hrs later. This way you get a higher daily peak... always best to fight the borrelia. No strict rules here though.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
| IP: Logged |
posted
Thanks for all the replies. I didn't feel like going into my whole story before...I guess it's just hard to think about.
I actually first got a severe case of lyme and babesiosis in 1997. I've been sick eversince.
I think I didn't add that to my post also because I don't want to discourage people who are hoping to get better soon.
I saw SO many doctors over the years and have been on everything at all types of dosing...Doxy, Penicillins, Mepron, Zithromax, you name it.
The thought of how much money my mom, my hubbie and me have shelled out over the years for supplements alone makes me want to puke. I've taken it all.
I was a guinea pig back when if you told people you had lyme, they looked at you like you were from mars.
It was a VERY slow battle but it seemed like I eventually got over the lyme and babesiosis (I THOUGHT!) but was still left with chronic fatigue, some neuro-symptoms, flu symptoms on and off... just left with a body that was still not well.
Haven't been able to work, tolerate much exercise, always exhausted, etc.
Over the past few years, my mind has gotten out of the "lyme-world" and onto other possibilities like systemic candida, adrenal fatigue, mercury toxicity, etc.
Since last August, I've experienced a drastic downward spiral in my health in every way. I've had no clue what was going on since then.
On Monday, my general doctor called me after doing some blood work and said I'm positive for lyme!
I was dumbfounded but also relieved at the same time because even though this may sound weird... it's a familiar condition.
I've been so freaked out over my health-crash lately. The NOT-knowing was the worst part.
From years of experience, I'm all-too familiar with the herxes, symptoms, slow process of getting better, etc.
At least I don't have to sit here and be frightened wondering what's wrong anymore. I just have to do my part and rest, get treated, etc.
I really don't get why ticks love me but they do. No one else in my family is like this except me.
My hubbie and I pulled a tick off of me I think in October so honestly I have no idea when this started again.
Since coming back to lymenet and reading some posts and info (I used to post years ago under a different username that I now forget), I'm starting to wonder if this is a relapse from the old, old infection. I don't really know how that works so it will be good to talk to the new LLMD.
It seems though that I started totally crashing after we pulled that tick off of my stomach.
It's crazy but this is like the 4th time I think I've been bit since the first infection in 1997...that I know of!
I love nature and want to be outside but I feel at this point, as soon as I step in the grass, it happens again.
In 10th grade, I got Esptein-Barr (can't spell that). After I recovered from that, I started getting monthly sinus infections.
Then when I was 19, my life was completely turned upside down with the big bite.
With me, I honestly think there's something there...maybe adrenal fatigue or something to do with that, that is the reason WHY I have such a hard time fighting this stuff off like other people seem to have an easier time doing.
I'm also seeing a naturopath right now and just did a big adrenal test on Monday so we'll see what that says.
He's interested in finding the root cause of why I seem to be challenged with my immune system. So I'll be juggling him and the new LLMD together.
I'm hoping that will work out.
I honestly still believe I will get better one day. Even though they've been small breaks, I've seen a week here or a week there where I felt closer to normal.
Unfortunately, those breaks never last...it's a big tease.
After reading some Burruscano info here, I really think my central nervous system has been damaged or affected by the first bite in '97.
Eversince then, I've had daily issues with shakiness...just feeling like I'm gonna fall apart if I try to be too active or stand for too long.
I've never had that part of me treated so I'm really looking forward to talking to the new LLMD about how this all affects the CNS.
I guess there are tests he can run and hopefully some treatment. I'm just hoping the damage isn't permanent.
So, that's my story in a very short version. It's funny...posting now I feel like a newbie but I'm not at all.
Lymenet feels like an old friend because I used to spend so much time here reading posts back in the day.
It's been SO long since I've done Doxy, I couldn't remember the details about taking it.
I just want to at least know for the next two weeks that I'm stopping the progression of this beast.
The lyme has been taking over my body and I forgot how frightening and awful it can feel.
With all the ABX and doses I've been on, I totally feel like I've had enough experience to up my dose myself.
BUT, I'm just a little afraid of the herx. :-) It can't be worse than what I'm feeling now though.
It feels so good to post here. I've been in emotional agony for 9 months not knowing what is going on in my body.
At least now I feel I have a place I belong! Thanks for the welcome. :-)
Carolyn
[ 05-07-2009, 10:52 AM: Message edited by: marriedchick ]
Posts: 41 | From New Jersey | Registered: May 2009
| IP: Logged |
posted
I would go to Ilads and read Burrascanos Guidelines. He gives alot of information on Doxycycline.
Posts: 743 | From New York | Registered: Apr 2009
| IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
I know when I first found out I had Lyme (2 years ago) I was put on oral Doxy 200 mg/day and was herxing REAL bad.
It is up to you, but seeing that you are seeing an LLMD soon, why mess with it?
I feel for you because when I was first sick those were the pills I was taking and I felt like I was dying at points.
The heat,noises, and light besides the overall fact that my body was in pain was enough to send me 6 feet under!
Good Luck and Hope you feel better!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
posted
I think for now I'm gonna stick to the 100mg twice a day. I think I'm herxing pretty bad.
It's hard to tell because I was getting so sick before I started but I think I can tell a difference in the "awful-ness."
All the heat is back, aching, brain fog, confusion, anxiety, numbess, creepy-crawling feeling in every part of my body, ringing in ears, super-sensitivity to noise, some blurry vision when I look at the tv, lights look weird and more.
Oh what fun this is. This is the weirdest disease. The worst part is the way it makes my mind feel. I just feel like I'm gonna lose it but I have to keep reminding myself it's the bugs and not me.
[ 05-07-2009, 10:43 AM: Message edited by: marriedchick ]
Posts: 41 | From New Jersey | Registered: May 2009
| IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Have you been tested for coinfections as well???
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
posted
Yep, the co-infections are negative now. Good question though. Are the tests totally accurate for the co-infections? I know you can be negative with the lyme and still have it.
Why, do some of my symptoms sound like co-infections?
I don't think I was tested for Mycoplasma. Is that a lyme co-infection? That word wasn't around back in the day when I was sick with lyme and babesia.
[ 05-07-2009, 10:44 AM: Message edited by: marriedchick ]
Posts: 41 | From New Jersey | Registered: May 2009
| IP: Logged |
WildCondor
Unregistered
posted
200 mg/day is not enough, it should be 300-400 mg/day. It IS better than nothing, but it's generally considered to being inadequate dosing, even for early Lyme disease. Make sure you stay totally out of the sun!
IP: Logged |
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
To be honest with you any testing that deals with Lyme is in my opinion, a crap shoot.
I would highly recommend getting your blood done through Igenex to rule out all co's and possibly find more bands of Lyme.
You could be suffering from a laundry list of coinfections besides the Lyme.
When I first was diagnosed I tested negative for all co's(2 years ago) now I am testing positive for Bartonella(B.Henselea & B. Quintana), Babesia, and Mycoplasma.
So like I said, It's a crapshoot.
Like WildCondor has mentioned with the Doxy, you have to stay out of the sun.
I am on IV Doxy and this time of year really kills me. I can't even have the sun touch my skin without burning up.
Good Luck to you!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
| IP: Logged |
posted
Hopefully my new LLMD will test for all co-infections...I'll mention Igenex to him but he's supposed to be one of the very best LLMD's out there so I'm sure he already knows how to test for them.
I think I'm changing my mind and will try 200mg's in place of one of my 100mg doses just to see what happens.
I guess it doesn't make a difference whether I do it for my morning dose or night dose.
Thanks for the sun warning. I forgot about that!
I'm a sensitive, fair-skinned redhead already so I'm sure now with the Doxy, I'd be even more raw from the sun.
That stinks though because I love soaking up my rays for a few minutes each day...vitamin D!
[ 05-07-2009, 10:55 AM: Message edited by: marriedchick ]
Posts: 41 | From New Jersey | Registered: May 2009
| IP: Logged |
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
NO!! Don't soak up any rays if you are a 'fair-skinned redhead on doxy.' OUCH! Literally.
I still say don't go to a 200mg dose for Now. Not until the 5th week anyway... And your new doc may just Switch your abx, due to the summertime/ sun angle.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
| IP: Logged |
posted
Kete-tracker - What's the deal with the 5th week?
Yeah, it would be nice if he switches the ABX since I love laying in the sun.
Posts: 41 | From New Jersey | Registered: May 2009
| IP: Logged |
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Hmmm. Now I'm questioning my LLMD.
He's had me on 200mg a day of Doxy for almost 2 months.
And he just started me on Rifampin at the last appointment.
Does it make a difference with yur weight?
I'm down to the 125 range now.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
| IP: Logged |
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
The 5th week is the start of the second BB growth cycle while on the abx. (Remember- 28 days )Symptoms typically let up, allowing you to dose higher w/o ending up at the ER.
BUT, it appears you've been taking abx for years (I weasn't aware until you posted that long one above) so this may not apply. The 4th week is often tough for those on a strong new Lyme-fighting abx, according to Dr B (see Guidelines blurb), but no-one is really sure why.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
| IP: Logged |
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Starfall- Sorta odd that an LLMD would have you on 200mg / day, at 125 lbs, for the 2nd month. Not a therapeutic level, acc to ILADS.
You need to get the [blood] serum "trough level" up to around '3'... and I don't think that 200mg would cut it. Not at your weight. (Yes, of course the weight matters. i.e: A 75 lb child is often Rx'ed at 1/2 the adult dosing... though I believe the 'cyclines are not used with young children.)
I'd quiz the doc if I were you. Are you on other meds/ abx? That might influence the dosing.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Wink]](wink.gif)
You'll burn easier when you're on a "cycline".
Printer-friendly view of this topic