I am new here and wanted to say Hi. I was just dx with Lymes and have been put on a 3 week course of doxycycline orally.
I have read so much and it seems that some sights say this is standard treatment and others say longer and Intervenous is the best way to treat Lymes.
Looking for insight from some experienced Lyme people.
Hope to get to know you all better.
-------------------- Hope your having a great day!
Karol Posts: 72 | From The arm pit of the world. | Registered: Jun 2008
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bettyg
Unregistered
posted
welcome karol, YOU NEED 2 MORE MONTHS OF ANTIBIOTICS FOR RECENT BITE at least!!
i'll be back late tonight UNLESS TORNADOS/LIGHTENING predicted hit my area!!! ***************************
WELCOME, would you like a FREE copy of my newbie package of 124 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
**********************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
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we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
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posted
Were you bitten within the past few days??? 2-3 wks of doxy will not always get rid of ALL the spirochetes. You run the risk of it coming back later or not leaving at all.
If it were ME, I would also want 400mg of doxy per day... and for at least 6-8 wks. The spirochetes replicate every 3-5 wks... so you want to be on the doxy at that time!!
Please drop the "S" from Lyme. It's kinda like fingernails on a chalkboard around here!!
We're so glad you found us though!!! Tell us how recently you were bitten and if you've been ill for awhile, tell us a bit about that.
posted
Wow, sorry about the s on Lyme. Goes to show I am new at this.
Here is my story but long version short.
I was dx with Multiple Sclerosis in 2005 but I NEVER accepted this dx and always felt like the doctors were missing something. This dx came after going blind in my right eye, landing in the ER of the local hospital, MRI and 4 lesions on the brain....Hey you have MS.
I took Interferon drugs for a while but continued to progress with symptoms so I stopped and again questioned the dx of M.S.
About 6 weeks ago something started going really wrong and I just felt horrible. Went to my family doctor and he took blood. Results came in and he said, "I think you have Lupus" and sent me to a Rheumatologist.
My first visit with the Rheumy doctor and 23 tubes of blood later.........I go back to get the results and he tells me I have Lyme and puts me on Doxy for 3 weeks, 100mg am and pm. He said once we clear up the Lyme we will re test for Lupus and also told me Lyme can cause false negatives or positives with Lupus bloodwork.
I am 3 days into treatment, 100 times worse now then 3 days ago and after some research I am wondering if this treatment is enough???
My Western Blot showed positive with 2 positive bands...........#'s 23 and 41KD. IgM was elevated. Doctor said IgM = new Lymes and IgG = chronic yet I have read differently so I am confused. My IgG was not elevated.
This is my story in a nutshell. Maybe all along it has been Lyme and not MS.
Anyway, Thanks for the welcome to the board.
-------------------- Hope your having a great day!
Karol Posts: 72 | From The arm pit of the world. | Registered: Jun 2008
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-------------------- Hope your having a great day!
Karol Posts: 72 | From The arm pit of the world. | Registered: Jun 2008
| IP: Logged |
bettyg
Unregistered
posted
karol,
be really careful in the sun since you are taking doxy!!!
long long pants long sleeves hat when driving .... GLOVES socks with your shoes
check out in my newbie package for NOIR, no infrared wraparound sunglasses! i have 3 different shades of light coming in from them! i don't go anywhere without this wonderful, affordable eye protection.
so sorry to read about your eyes being affected too; we have many going thru that here also.
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posted
I am sorry bettyg......what newbie package???
Gosh I feel dumb!
-------------------- Hope your having a great day!
Karol Posts: 72 | From The arm pit of the world. | Registered: Jun 2008
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Hi Karol, welcome aboard,its the pits to HAVE to be here,,but if the need fits,,a GREAT place to be.
First thing that smacks MY face is the 100 twice a day,,,double that,,take it twice as often and find MORE.
Sounds like you are having a 'duck' treat you,,,find a real deal LLMD!!
Indeed you are herxing,,,that is a good sign in that it is helping kill the load!! bad feelings I have read,,I never had one!!
I am NOT a expert reading your tests,but whatever your duck told you,,,dont believe so much,,,tests are notoriously BAD!!
Welcome aboard,stick around,read, LEARN, and socialize,,,we ALL know what your up against!! Its a bumpy road back to great health,,,hope yours is as smooth as possible!!
Welcome to the TBD family!!!like --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Thanks justdon for the warm welcome and advice.
I am trying to locate a LLMD that takes Insurance.
On permanent disability and can not pay out of pocket.
This group of people............well your all great.
-------------------- Hope your having a great day!
Karol Posts: 72 | From The arm pit of the world. | Registered: Jun 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Hi Karol-
Welcome aboard & sorry you need to be here too.
I was just reading on the board & noticed that you are only on 200mg/day of Doxy.
I believe that is bacteriostatic not bactericidal. I'm not sure that dose would be enough to cause a Herxheimer reaction.
I only experienced a Herx when my Doxy dosage was bumped up to 300mg/day. I think many are actually given 400mg.
I'm guessing that, if progressed to "MS", you'll need more than what you are currently taking.
Many don't realize that they've been bitten. The ticks can be VERY tiny, there isn't always a rash and they inject some kind of anesthetic when they bite so you won't feel them.
Have you spent any time in wooded or grassy areas? Have you had any flu-like illnesses, that may have preceded a progression of symptoms?
I think you would likely benefit from an evaluation by a Lyme-Literate physician. I hope that you will post a request in "seeking a doctor" to find one in your area.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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If it wasn't a herx reaction, you may just be allergic to tetracyclines (doxy, etc...)
Just my guess though.
If that's the case, you may need to try different abx.
Again, just my personal thoughts.
Hope you're on the upside today
With Sincerity, The Future LLMD ...not current!!
-------------------- "So I decided to tell my neurologist everything I felt. I said, "I can't think straight, my neck hurts, my muscles are weak, I'm nauseous, I have vision problems....." My doctor's response: "Sounds like Glaucoma." Un/misdiagnosed 15 years. Dx 12/07 Posts: 11 | From USA | Registered: Jun 2008
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posted
I have taken doxy before so I know there is no allergy to it, just a horrible reaction I do NOT want to repeat.
Just back from vacation and will start to look for a LLMD now.
Probably will not begin treatment until end of July as I leave for France July 14th and do not want the herxing thing going on when I am on the other side of the world.
-------------------- Hope your having a great day!
Karol Posts: 72 | From The arm pit of the world. | Registered: Jun 2008
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posted
Lyme Dr. are far and few between..and not too many take Ins...but most times if you pay and get a copy of the bill from them you can send it into your Ins and get most times 80% or 100% back..just a thought..take care and have a safe trip
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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