Well here it is...i finally got a dx through an LLMD, Dr.M, but he lives on the other side of Canada from me.
Went to my family doctor, Dr. R, and he is totally willing to treat me. He has started me on 200mg of doxy/day. Should I call him tomorow to go up to 300 or 400mg/day? I saw in some of treepolls stuff that recommend start is 300 to 400mg a day.
Thanks for any advice.
Thank god for this board...i would not be in treatment or even know about lyme if it were not for all you guys.
Lesley
Posted by SForsgren (Member # 7686) on :
200 won't touch it. You need 400, sometimes more. See Dr. B's protocol linked on my Protocols page at the site below. Answers all of these types of questions.
Next, get IgeneX tested for all coinfections: Bartonella, Babesia, Ehrlichia. This is a MUST.
It is good that your doctor is willing to help, but treating Lyme Disease is very difficult, and you may be doing yourself a favor by not teaching someone how to do it or suffering from their lack of experience/knowlege and getting an LLMD.
Posted by JimMet (Member # 7787) on :
I started on 100mg bid of Doxy and my symptoms worsened. As soon as it was upped to 200mg bid, I saw immediate relief. It takes that much to penetrate the blood/brain barrier and to make the doxy bactericidal, not just bacteristatic.
Good Luck!
Posted by JimMet (Member # 7787) on :
Another thing. The doxy will DESTROY your digestion if you don't take it with plenty of food and acidopholus tablets.
Posted by Lymetoo (Member # 743) on :
Yep....Go for 400mg unless you are a large person...Then I'd go for more. And YES, please take plenty of acidophilus!
Posted by lymesly (Member # 8528) on :
I went to the Hope to Heal Lyme conference last weekend and they said you need 400....
I'm on 100 now, so need to talk with the doc.
Posted by WildCondor (Member # 434) on :
400-600 mg per day! Make sur eyou take it with food, and as much food as you can. Do not lie down after taking your pills and drink lots of water with it or it can bother your stomach! 200 mg wont do anything, you need to double that dose and make sure you take it for long enough if you were just bitten. If you have been sick for awhile then you will need longer treatment. make sure you are tested for co-infections ASAP as well.
What kind of food is the best with Doxy, have you any idea? I mean that it wouldn't jeopadize absorbtion etc.
I took it on empty and now I feel miserable 3 days later.
Posted by AZURE WISH (Member # 804) on :
I just wanted to add a reminder abour doxy and the problems with the sun...
You can burn reall easy while on doxy...
so try to stay out of the sun or cover up.
I couldn't keep doxy down no matter what I tried to eat with it so I am no help there.
Best wishes Posted by Jellybelly (Member # 7142) on :
Ok, I am going to play devil's advocate here. I disagree totally. 200 mgs. of Doxy put me in the ER. WHY? Was I being made worse, heck no! I was herxing like He**.
JimMet, you said you started at 100 mgs. and felt terrible, went up to 200 mgs and got much relief. Let me offer this thought, could you possilby have felt better because at the higher dose, you had driven the Lyme into it's dormant phase in an effort to survive. In the dormant phase, it will cause you no problems and your own immune system is powerless against it, so are ABX.
Feeling good right off on ABX is not what we want. If we drive them into a dormant stage the ABX are absolutely uselss and we are filling our bodies with ABX that are killing all kinds of other good stuff, but not what it is we want to kill. You have to herx, and if you are not, you are not killing the Lyme.
Do you have to herx like He**, no. It can be controlled, by adjusting to lower doses, but higher doses will drive the Lyme deeper and into dormancy OR make you feel like you are dieing.
Am I talking just off the top of my hat, no. I am someone who is dealing with Mycoplasma Fermentans and Lyme and probably Babs. I have been on deaths door, looking like a anorexic, cancer patient after chemo and radiation. I not only felt like death, but I looked it.
Today with minimal use of ABX, and treatment of hypercoagulation, I am at about 90%. I am nearly symptom free and run circles around most of my family who also suffer with Lyme, but are not really being treated. ABX are a MUST, but Lyme is smart, they are not like any other bacteria, they do NOT respond to ABX in the same way. What works on your average infection does not mean it will do the same for Lyme.
We are getting stuck in a box AGAIN.
Ok..... off, the soap box and please don't throw tomatoes Posted by Nebula2005 (Member # 8244) on :
In my opinion--
Listen to your doctor. Listen to your body. It won't do you any good to take so much doxycycline that your body can't cope with the reaction.
I started on 200mg twice a day and just about died from the herx.
Even at 100mg twice a day I had some horrrible days. Ater seven weeks of this, I'm starting to have some good days.
There is no concensus on treating this disease.
You may not have a herx until the fourth, fifth or even later day than that. You don't want to have an uncontrollable reaction.
If you don't herx at 200mg/day, you can always discuss increasing the dose with your doctor. You don't want to alienate him/her at this stage of your treatment! You need a doctor to get you started.
Posted by Jellybelly (Member # 7142) on :
Cave, your comment caused me to The guideline protocols are just that. Guidelines. Bb will read those guidelines and adjust according. LOL Still grinning here. You say it in jest, but I wouldn't be surprised if the little snots could read.
Posted by jwenny (Member # 8831) on :
Lesley,
You may want to ask your LLMD about coinfections. I understand they need to be addressed first or you won't get well on doxy. what are you symptoms? i think those on this board can give you hints on coinfectons based on your symptoms. Seems 400 is the the standard from LLMDs...but i would listen to your body too.
Posted by bettyg (Member # 6147) on :
Someone mentioned light & doxy, so I'm going to include this info also. I always had EXTREMELY sensitive eyes to lights, glare, & reflection. With doxy, it became 200% worse; we live in a CAVE at home. Check it out to PROTECT your eyesight and skin from burning.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
TESTING FOR LYME DISEASE ... 3 main LYME TICK BORNE LABS IN USA!
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 3 USA's Lyme testing labs:
IGENEX LAB: 797 San Antonio Road Palo Alto, CA 94303 1.800.832.3200.
(If the early test, called IGM, is negative; the later test IGG is NOT done!) Please see their web site: www.igenex.com CALL for their current prices effective OCT. , 2005 and
to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices! Example, have it taken Mon. - Wed. Afternoon tests show more positive lyme results!
Here is the site to PRINT THEIR REQUIRED FORM to send with blood sample. For me, I printed the FIRST option available on the forms.
Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!
NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers. Medicare patients do NOT have to prepay!
2. MDLabs from NJ, www.mdl.net see their site; they too require their own form. NO prices are listed; you must call their 800 no.
3. BOWEN labs from Florida, www.bowen.net 727.937.9077.
You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US.
They fax the results and then about a week later send the actual pictures.
NO way to file for insurance since it's only a brief letter you get back from them even WITHOUT a 501 federal tax no!
Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.
NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).
FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!
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The guideline protocols are just that. Guidelines. Bb will read those guidelines and adjust according. LOL Still grinning here. You say it in jest, but I wouldn't be surprised if the little snots could read.