------------------
quote:Hi heres a bunch of links that will helpo you understand lyme. What your feeling may be a herx herximer reaction its the dieoff of spirochetes which produces toxins makes you feel pretty bad.
Originally posted by NatalieA:
Hi-just found this site. I was diagnosed w/ Lyme on 7/22-started dioxcylcene 200 mg on 7/25. I think (just today)I am finally starting to feel a little better, but for the last 3 weeks 7/11-8/1, I have never been sicker in my life! on 7/14,ended up in the ER room with a platelet count of 10,000 ( I have ITP too) and had a Cat scan to rule out a brain bleed.,which luckily was fine. That's when I asked the hospital to run a lyme test which I didn't hear back about until the 22 of July. Anyway, I imagine the antiobiotics are finally starting to work I hope. ( Although I had a "good" day Saturday and was so sick again on Sunday). From the Elisa & Western Blot test, is there any way to tell just how long you have had Lymes disease? ( Sometimes I wonder if this whole ITP thing could have beeen brought on by having Lymes for the last 2 years..?.just a thought)
And as for the symptoms-I have felt so dizzy, blurred vision,that I don't even feel safe driving, saw floaters once too. THe extreme headaches with the neck stiffness/pain have been really bad and the fatigue! I am on the couch 5-6 hours a day( w/the headaches).Stiff joints, and mentally, just feeling weird. Although,yesterday I finally felt like I was getting better, so maybe this is now all behind me, but for the last 3 weeks it has been so bad. I have had "flus" before, but never anything that kept me down for 3 whole weeks. So once my antiobiotics are done, I should be ok,right? Does the Lyme leave your system and do doctors just check it with more blood tests?
Sorry for the jumble of questions, this is all new to me, and I am just learning about Lyme..I know all about ticks..get them all the time and never really gave it much thought before this! Thanks for any help advice . Natalie
Newbies List 08/01/05
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( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test.
- = Not Present
+ = Low
++ = Medium
+++ = High
+/- = Equivocal = Indeterminate its there but not as intense as low) )
See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH
Western Blot
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More Tick Disease Tularemia Mycoplasmal Infections Alzheimer's ALS Lida M Lupus Lyme Lyme Misdiagnosed as other disease's Page 4. Check Diet Link Atkins Diet PORT-A-CATH (catherter) Transmission Lyme Sexually Transmitted ??? Looks like like they killed this one hmm Blood Supply, Its back! Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections Legal Help InsuranceLaws Link1 MatthewGoss Site Killing Lymphocytes By Spirochetes Support SupportGroups Canada Part1 Long over Due Updated in a Nutshell Canlyme MAG Articles By Tom Grier Help Free Melanie Reber Blood Donor Info Female Related Problems Tin Cups Pregnancy & Lyme Update 5/24/05 Dirty Truth Page 5. How UltraSound Works Interested in what Trolls are? 2. Success Stories Movies on Lyme Conspiracy Theories Newbie Links Updated 08/01/05 It takes more than 200mg of doxy a day to get rid of this there are alot of people here that have been under treated and it comes back. You dont want that the longer you have lyme the harder to get rid of it. Symptoms are vast it causes hundreds of symptoms. Read Dr b's stuff in newbie links and read about herxes. Get a LLMD Newbies List 08/01/05 WELCOME To LYMENET Page 1. Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and Lyme State Info Cheryl's LYME DISEASE TREATMENT & DIAGNOSIS How to Search Courtesy of Danq BorreliaBrain Letter Page 2. Lyme Disease Audio Network Lyme Disease Symptoms Co-IinfectionsThanx M Why You Can't Trust Medical Journals Anymore Labs Western Blot Info Explaining Borreliosis (Lyme) Western Blot Tests See this ( . )thats the size of the larva stage tick... Western Blot Page 3. Flagyl,= List of ****dazole's that I have found Drug Interactions and Other Drug Info Candidiasis Yeast Problem Diet too Parasites More Tick Disease Tularemia Mycoplasmal Infections Alzheimer's ALS Lida M Lupus Lyme Lyme Misdiagnosed as other disease's Page 4. Check Diet Link Atkins Diet PORT-A-CATH (catherter) Transmission Lyme Sexually Transmitted ??? Looks like like they killed this one hmm Blood Supply, Its back! Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections Legal Help InsuranceLaws Link1 MatthewGoss Site Killing Lymphocytes By Spirochetes Support SupportGroups Canada Part1 Long over Due Updated in a Nutshell Canlyme MAG Articles By Tom Grier Help Free Melanie Reber Blood Donor Info Female Related Problems Tin Cups Pregnancy & Lyme Update 5/24/05 Dirty Truth Page 5. How UltraSound Works Interested in what Trolls are? 2. Success Stories Movies on Lyme Conspiracy Theories Newbie Links Updated 08/01/05
2 years ago I had basicly the same symptons you are discribing except I had the bullseye rash.I was treated with 21 days of amoxicillian and told that would fix me up . I wish I would have known then what I know now. I felt fairly good after the 21 days of treatment of amoxicillian but slowly over the next year started to have what I thought were unrelated illnesses. joint problems,vertigo,bladder problems,eye problems, night sweats, hair loss,depression,memory & concentration problems ect ect ect... I now have neuro lyme and it affects every part of my daily life. I haven't been able to work for months. I have been getting treatment and am alot better but at my worse, I no longer remembered my childrens names when I looked at them. At the hospital one day I couldn't remember how to spell my own name. Please read from Treepatrols list of articles and post for a lyme literate Medical doctor (LLMD) With this disease knowledge is very important.Learn all you can. I wish you well Sounds like you've had a very rough time of it. For certain, you've been Lymed!! Definitely, 200 mg/day of Doxy is only about half of what you need. For certain, the hospital's only going to recommend it for a fraction of as long as you need it. You should by all means find yourself a "Lyme Literate Medical Doctor." You'll find that others tend to scoff at treatment lasting longer than 30 days. However, most of the folks on here, as well as lots o' research, indicates a relapse rate that's pretty shocking for folks who under-treat, like your hospital is going to want to do. So: Even if you're feeling better in 30 days, don't stop. Chances are, it's not really gone, just knocked down. You want it really, really, really gone. Spend some time reading the newbie links TreePatrol has posted. Read some of the articles and research. Read, read, read. Expect to feel a little rotten on account of Herxheimer effects (dying critters littering up your system) before you feel better. Post in the "Seeking a Doctor" forum to find an LLMD in your area. Expect scorn and derision from your regular docs at the mention of anything over 30 days of low-dose doxycycline, but be armed with knowledge beforehand! Good luck on your journey... We're here for you!!! :-) Michelle
You're fortunate you had a positive test. It's also possible to have Co-Infections like Babesiosis, Ehrlichiosis, & Bartonella. You were wondering if you've had LD for 2 yrs. Have you had symptoms and/or changes in your health since then? The dose of Doxycycline you're taking (200mg/day) is the the typical dose prescribed, but according to Lyme Literate Med Drs (LLMDs), it is not enough. Treepatrol's links have excellent, reliable info on all aspects of TBDs. I recommend you start with the ILADS links. www.ilads.org page 16: Antibiotic Choices If treatment is inadequate, the stronger bacteria will survive & hide out in the body. A person may feel like they're well, but at some time in the future, the disease will flare up again. It will be much more complicated to deal with then. Length of treatment is equally as important as the dose of antibiotic (abx). The Lyme Disease Foundation brochure says: Answers to my questions are not required, but would help people form opinions & make suggestions. Besides learning all you can, I highly recommend you be evaluated by a LLMD - ASAP. On the left, click "Support Groups" & check those in your state & surrounding states. Go to "Seeking a Dr" here on LymeNet & put your location in the title. Feel free to ask as many questions as you need to. Usually, someone will have the answer.
Try googling Ehrlichia and ITP
I think (just today)I am finally starting to feel a little better, but for the last 3 weeks 7/11-8/1, I have never been sicker in my life! on 7/14,ended up in the ER room with a platelet count of 10,000 ( I have ITP too) and had a Cat scan to rule out a brain bleed.,which luckily was fine. That's when I asked the hospital to run a lyme test which I didn't hear back about until the 22 of July. Anyway, I imagine the antiobiotics are finally starting to work I hope. ( Although I had a "good" day Saturday and was so sick again on Sunday). From the Elisa & Western Blot test, is there any way to tell just how long you have had Lymes disease? ( Sometimes I wonder if this whole ITP thing could have beeen brought on by having Lymes for the last 2 years..?.just a thought) And as for the symptoms-I have felt so dizzy, blurred vision,that I don't even feel safe driving, saw floaters once too. THe extreme headaches with the neck stiffness/pain have been really bad and the fatigue! I am on the couch 5-6 hours a day( w/the headaches).Stiff joints, and mentally, just feeling weird. Although,yesterday I finally felt like I was getting better, so maybe this is now all behind me, but for the last 3 weeks it has been so bad. I have had "flus" before, but never anything that kept me down for 3 whole weeks. So once my antiobiotics are done, I should be ok,right? Does the Lyme leave your system and do doctors just check it with more blood tests? Sorry for the jumble of questions, this is all new to me, and I am just learning about Lyme..I know all about ticks..get them all the time and never really gave it much thought before this! Thanks for any help advice . Natalie Natalie, Welcome to this 24/7 educational & support group board, www.lymenet.org ! Print off the links then check them off as you read as you could spend several months reading all of this. Treepatrol constantly adds new links as they become available from the members here. print & read Dr. B's (a lyme literate MD) info first; you will come back to this often. Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Some guidelines from Betty/others on using this message board: * Do NOT use all caps when posting; it's hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons. * We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs. * You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of ``help, question'' etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can't read all the posts on our limited time here...thanks for understanding. * If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our chronic, late-stage lyme eyes. * To just reply without quoting, go to the top or bottom of screen in the black & white area to reply or post a new topic. Many of us couldn't see it when we 1st started posting. Thank you for helping us all out! janet thomas had a good suggestion about ITP and Ehrlichiosis, a possible co-infection. Edit to add: I don't know if ITP differs from Thrombocytopenia, but in Dr B's "Guidelines" under Ehrlichiosis, he says: Standard treatment consists of Doxycycline, 200 mg daily for 2 to 4 weeks. Higher doses, parenteral therapy, and longer treatment durations may be needed based on the duration and severity of illness..." To clear up one thing - [This message has been edited by cbb (edited 05 August 2005).]
It's called a "Herxheimer" reaction. The abx starts killing the bacteria, and the body labors to get rid of it. I haven't met a lymie yet that didn't get it. It's a roller coaster, and many here have been through it, so keep posting for support. You're going to be OK. It takes time to treat this illness. Let us know how we can help.
Most people herx when they're on abx, but it varies from very mild to severe, depending on the person. When the bacteria die, they give off a toxen that the body reacts to. Some symptoms will get worse & some people develop new symptoms. Get plenty of rest & eat nourishing foods. Eliminate caffeine & sugar - as much as possible. Did your specialist tell you to take acidophilus? Antibiotics (abx) kill good bacteria along with the bad so you have to replenish the good bacteria in your system with acidophilus. Be sure it's a high grade acidophilus & take enough per day. Dr B says 2 with each meal. Be sure to have at least 2 hours between abx & acidoph - before & after - or the abx will kill the acidoph before it can help you. Concerning the possible Lyme test in 2002 - If you've had Lyme and possibly co-infections since 2002, then it may take a while to get things under control, especially since you've been on prednisone. When steroids suppress your immune system, your body can't do much to fight the spirochetes. Under the care of a LLMD, your prognosis should be good. Just want you to be sure he's a really, truly Lyme Literate Med Dr. Here's the thing with "Herxing." It's good news and bad. Bad because you feel like crapola. Good because it means the antibiotics are killing off a boatload of borrelia burgdorferi, the nasty little lyme bacteria...as they die they release toxins which in turn make you feel like crapola. But there is light at the end of the tunnel. It won't last forever. I swear it won't. Sure wish you could find a Lyme specialist - he'd have you off those steroids before you could blink three times. They're delaying your progress for sure. It's so important to find a good doc... Lyme can really dig in for the long haul, let me tell you! Your best chance to eradicate it is by having a good doc on your team. Here's a little summary of articles on Persistence of Lyme bacteria after aggressive courses of antibiotics!!! Browsing through it should convince you that finding an LLMD is a good move on your part. 'Cause you don't want to go through this again if you can help it!!!! Now. Take heart. This will pass. You are going to get better and better, maybe in little increments, but you will. I did! Keep reading and learning, and coming here every day and posting a lot and telling us how you are!!!! Hugs, Michelle Welcome to Club Lyme! You've come to the right place with your questions. Here is my web site with my favorite Lyme resources: There's a good article on Herxes about half way down. I agree with others here that 200mg of Doxy isn't enough. Make sure you read Burrascano's Diagnostics paper on my site. This is the single most important thing to read. KrisKraft PS: I'm working on a documentary on Lyme right now. You can read about it at: Ehrlichia is a tick borne infection(TBD) that may cause low platelets. Ehrlichia is treated frequently with doxycycline. You are probably right to be concerned about the use of prednisone. It does suppress immune function. Your need to optimize immune function with TBD. You may wish to consult a LLMD-a Lyme literate doctor. Sometimes it takes many months to treat long standing TBD. And some herxing along the way. Keep asking and we'll help you. janet
I am new here as well. I have had what I and many think/believe to be Lyme, from my symptoms, to where and when it began. I have heard from some that NOT ALL people herx, so dont have it in your mind that you will, ok...You may, you may not! I just started Amox. 500mg's 3 x's a day until I can see my LLMD in Boston, he is a good Dr. from what I hear. I have also had abx. for three times during the year, so I may not be as bad off as others, but I do have my days.. I am just over a year now. Drink plenty of water, w/ lemon, stay away from caff., sugar. Eat lots of high fiber foods. Decaf all the way from what I hear, here. These people on Lymenet are warm and loving, they will help you in any way. You will be fine! Rob ------------------ The latest thing was about the insomiac person.. I jumped up and said "yeah that's me too! It's been horrible.. everyday I can't sleep and am up around 4:00 am...
Infections by Bugs Ticks Mosquitos Lice Etc
Infectious Disease List
Tularemia
Mycoplasmal CDC
Good Article ALS MS And More Etc
Good Article ALS
ALS
Lou G ALS
M S
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Danette MacDonald
I'm not giving up
ALSO trigger MS
Lyme a hidden danger
The saga continued
Tom Grier
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Lupus Lyme Misdiagnosed
Lyme Disease Misdiagnosed as Fibromyalgia
Fibro Lyme
Lyme Disease Misdiagnosed As ...
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Garlic Proper way to eat it
Garlic
Abx's Port
Transmission Fleas Mosquito's Food Etc
Transmission Etc
Black Flies & Lyme
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Transmitted Through Sex?
Sex Question-Serious-Adult Content
Good Site Canadian Lyme Disease Association
FDA on Lyme Testing
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Posted by treepatrol (Member # 4117) on :
quote:
Hi heres a bunch of links that will helpo you understand lyme. What your feeling may be a herx herximer reaction its the dieoff of spirochetes which produces toxins makes you feel pretty bad.
Originally posted by NatalieA:
Hi-just found this site. I was diagnosed w/ Lyme on 7/22-started dioxcylcene 200 mg on 7/25. I think (just today)I am finally starting to feel a little better, but for the last 3 weeks 7/11-8/1, I have never been sicker in my life! on 7/14,ended up in the ER room with a platelet count of 10,000 ( I have ITP too) and had a Cat scan to rule out a brain bleed.,which luckily was fine. That's when I asked the hospital to run a lyme test which I didn't hear back about until the 22 of July. Anyway, I imagine the antiobiotics are finally starting to work I hope. ( Although I had a "good" day Saturday and was so sick again on Sunday). From the Elisa & Western Blot test, is there any way to tell just how long you have had Lymes disease? ( Sometimes I wonder if this whole ITP thing could have beeen brought on by having Lymes for the last 2 years..?.just a thought)
And as for the symptoms-I have felt so dizzy, blurred vision,that I don't even feel safe driving, saw floaters once too. THe extreme headaches with the neck stiffness/pain have been really bad and the fatigue! I am on the couch 5-6 hours a day( w/the headaches).Stiff joints, and mentally, just feeling weird. Although,yesterday I finally felt like I was getting better, so maybe this is now all behind me, but for the last 3 weeks it has been so bad. I have had "flus" before, but never anything that kept me down for 3 whole weeks. So once my antiobiotics are done, I should be ok,right? Does the Lyme leave your system and do doctors just check it with more blood tests?
Sorry for the jumble of questions, this is all new to me, and I am just learning about Lyme..I know all about ticks..get them all the time and never really gave it much thought before this! Thanks for any help advice . Natalie
How to Post what where explanations
Posting
Remember This
Rules LymeNet.Org Webmaster
Rules
Here's more goodys! A typical response to newcomers.
foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Lyme Disease symptoms 2005
Lyme Symptoms 2005
Post for a LLMD in
Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
Support Links LLMD's
Why we Don't Use Dr's Names Here
Cheryl's LDT&D
Lyme Disease Misdiagnosed As ...
Art Doherty Misdiagnosed
Art Doherty Lots a Links
TC LymeNet Links for New Members
TC 50 Questions
DISEASE INFO - COINFECTIONS
Dr B's Treatment Guidelines
Dr. Joseph J. Burrascano's Treatment Guidelines
CDC Website on Lyme Disease
International Lyme and Associated Disease Society
Lyme Symptoms
Lyme Disease Symptoms PDF
Rashes
Tick Pictures Graphic
Tick Pictures
Symptoms & Associated Conditions
Rose's 15 Facts for Newcomers
Making the Most of Your LLMD Visit
Camp A and Camp B, The Lyme Disease Contoversy
2nd Version Camp A Camp B
Citations for Underreporting CDC
Something to share with friends and family members But You LOOK Good!
MDL
Igenex Labs
Bowen Lab
Bowen Lab Forms Protocol
FDA It is important that clinicians understand the limitations of these tests
Explanation of Western Blot Bands
Igenex Labs on the Western Blot
Melissa Kaplan's Lyme Website Explains Western Blot
Dr. C Explains Western Blot
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test.
- = Not Present
+ = Low
++ = Medium
+++ = High
+/- = Equivocal = Indeterminate its there but not as intense as low) )
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH
Blood Brain Barrier
ABX `s Cross Blood Brain Barrier
Blood Tests Meanings
Cyst's Treatment
ABX= Antibiotics
Antibiotics Poll
Abx's Poll
Flagyl" by Martin Atkinson Barr
Nitroimidazoles
Drug Digest & Interactions
Drug Interactions
American Medical Women's Association
Tiscali Reference Encyclopedia
Herxing
What Is a Herxheimer Reaction?
What Is Herxing?
The Herxheimer Reaction
Oral Yeast
Oral Yeast
ZIPZIP Thanks
Put word Diarrhea in Search
Morgellons
Infestations
Lyme Parasite or Bacteria?
Infections by Bugs Ticks Mosquitos Lice Etc
Infectious Disease List
Tularemia
Mycoplasmal CDC
Good Article ALS MS And More Etc
Good Article ALS
ALS
Lou G ALS
M S
MS
Danette MacDonald
I'm not giving up
ALSO trigger MS
Lyme a hidden danger
The saga continued
Tom Grier
Links
Lupus Lyme Misdiagnosed
Lyme Disease Misdiagnosed as Fibromyalgia
Fibro Lyme
Lyme Disease Misdiagnosed As ...
CFS CFID
CFS CFID
CFS
Garlic Proper way to eat it
Garlic
Abx's Port
Transmission Fleas Mosquito's Food Etc
Transmission Etc
Black Flies & Lyme
Transmission Art Doherty
Transmitted Through Sex?
Sex Question-Serious-Adult Content
Good Site Canadian Lyme Disease Association
FDA on Lyme Testing
Lyme Literate Attorney's PA
PA
Medical Records Privacy
Search Drs Background
Link2
Search Dr's Backgrounds link
Legal Help
Legal Help
Legal Help
Legal Help
Legal Help
GreatSite
MedicalDictionary
USA Support
Canada SupportGroups
Associations, Foundations, and Support by Country
Marnies...... Ten Points Regarding Mg and Lyme Disease
In a Nutshell P1
Part2
Part3
Part4
Part5
Part6
Part7
For My Friends
Silver Discussions
Silver Treatments
Tom Grier on Silver
Grier
NMDA Receptor Lyme Brain
Help with Meds
Help! Free Meds
Vitamins you should Know
Tests Synonyms Guide
Lab Tests Looky
You can get your medical record for free once a year from the Medical information Bureau(MIB) if company participates
MIB
Coping with Financial Burdens
Pain Info
Pain Info
German physicist March 1999 Interesting
Female Issues
Unplanned Pregnancy
Pregnancy
Pregnancy?
TC Link Pregnancy
Insurance
Insurance SS
Disability Help Minoucat Bunches of Goody's
Permethrin
How to apply Permethrin
How to apply Permethrin Pic
Permethrin Site
Discussion on Repellants
ALDF Four Poster Coup
Tick Testing
Tick Testing
Herbs
Herbs Be Careful
HerbsCancer Center
Psychiatric Lyme
Fallon & Tager Report
Duramater NeuroPsych Info Kids&Adults
Neurologic Lyme
Neurologic Lyme
Sporadic Schizophrenia
Psychiatric Manifestations
Columbia Lyme
Schizophrenia & Lyme Disease
Sunra links
Scans & How they Work
Explains LD50 Chemicals Toxicities
MSDS SITE
Silver
1.
3.Sorry to See it
4.Sorry to See it Happening
pq's Article on Trolls
Success Stories
Chat
LD Chat Room Links
Spirochetes Pics Link
SPIROCHETES FORMS 1
SPIROCHETES FORMS 2
SPIROCHETES FORMS 3
SPIROCHETES FORMS 4
MovieLink1
MovieLink2
MovieLink3
MovieLink4
MovieLink5 18mgBig
MovieLink6 52mgBig
MovieLink7 70mgBig
MovieLink8 Fast3mb
US Patent Pathogenic mycoplasma
CDC CITATIONS
Citations
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Tree's Flash
Posted by zing (Member # 7124) on :
Hi Natalie
connie
Posted by Michelle M (Member # 7200) on :
Hi Natalie, and welcome!
Posted by cbb (Member # 788) on :
Hi Natalie,
Welcome to LymeNet.
So glad you found this website.
Most of us do not have a medical background, but we share info we've learned from experience with Tick-Borne Diseases (TBDs).
The test checks for antibodies (ELISA &/or Western Blot). It takes the body 4 to 6 weeks to produce enough antibodies for a positive reading, so apparently you've had LD for an unknown length of time.
Have you ever had a bull's eye rash?
Be sure to get a copy of all tests that have been done.
Start a medical file & journal.
Keep a record of dates of symptoms, copies of test results, treatment, etc.
(See Dr B's "Guidelines" below.)
How long are you supposed to take the doxy?
On the left, click "Basic Info" - facts that everyone should know about Lyme & co-infections. May want to print a copy.
# 5-8 have info on testing.
www.ilads.org/burrascano_1102.html
Print "Diag Hints & Treatment Guidelines..."
It's 32 pages of excellent info, kinda like a Reader's Digest version of TBDs.
Doxycycline - "Adults: 100mg qid with food"
which is double what you're taking.
Treatment should continue until ALL symptoms have been gone for 6 to 8 weeks.
"There is no test that can....prove that a patient has become bacterium-free."
Drs' names are not given here, so info will be e-mailed to you.
Posted by janet thomas (Member # 7122) on :
ITP
Posted by bg (Member # 46416) on :
I'm breaking up your long paragraphs so we chronic lymies can read it with double spaces in between.quote:
Originally posted by NatalieA:
Hi-just found this site. I was diagnosed w/ Lyme on 7/22-started dioxcylcene 200 mg on 7/25.
Here's TREEPATROL's and TINCUP'S combination newbie links.
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html
http://www.lymeinfo.net/lymediseasetreatment.html
*
* LYME SYMPTOMS - http://www.lyme.org/otherdis/ld_symptoms.html
Bettyg, Iowa
Posted by cbb (Member # 788) on :
Natalie,
I'm concerned that we haven't heard back from you. I hope we didn't overload you with info.
ITP is Immune Thrombocytopenic Purpura.
I checked Google because I didn't know what it was. Meant to include it in my response in case there were others who were not familiar with it.
"Thrombocytopenia and elevated liver enzymes are less common, but likewise should not be ignored. Headaches, myalgias, and ongoing fatigue seem to relate to this illness, but are extremely difficult to separate from symptoms caused by Bb (Lyme).....
200 mg Doxy per day is recommended for Ehrlichiosis
400 mg per day is recommended for Lyme
Posted by NatalieA (Member # 7714) on :
Hi Cbb- thanks for your replies.and concern.. I just have not even been up to sitting and reading stuff on the computer the last week..I guess maybe I am going through that Herx thing?I did follow up with a specialist who changed my abx from 200mg doxy to 1000 mg biaxin..today I think I am feeling better ( but I had 2 of those days before and then got worse again)so I am still not sure I am out of the woods yet. Just so tired, although I can;t sleep at night even with sleeping pills. Very interesting about the LD and ITP.. I am trying to find an old doctor ( walk in clinic)I went to in 2002 when I got the weird rash on my leg that turned into me being diagnosed with ITP..I think he did a LD test, but then we probably never followed up on that because by then it was , oh you have ITP...you need to go to a hematologist..
Regarding my health over the last 3 years, I have ups and downs..sometimes very tired & fatigued, more headaches than I used to, Extreme bouts of bachache and weird elbow pain over the last 6 months or so..I just attributed it all to fatigue from ITP and when my platelets drop under 40,000, and the aches and pains to old age ( Ahh- I hit 40 this year!) and too much yardwork on the weekends! I wish there was a way to post a thank you to everyone on this site.. without you out there helping me understand this "new" thing I now have to deal with, I would be lost.. Many MANy thanks to you all!
Posted by NP40 (Member # 6711) on :
Hi Natalie, very common symptoms that you have for lyme. Textbook really. Keep posting, you'll learn tons about this disease. It's common for lymies to initially get worse on abx.
Posted by NatalieA (Member # 7714) on :
Hi- thank you for your quick reply. Regarding the Herx..how long does it last? I thought I was feeling better..then I get sweaty, break out in low grade fevers,and just feel generally crappy again..it's just so up & down and I just stand it anymore and am getting a little depressed. I was planning on going back to work on Monday, but right now I just don't know if I will be able to... I hate to sound whiny, but three weeks of this is enough already!
One more question I have while I am here..I am also on prednisone ( down to 20 mg now from 80) to treat my ITP. I know that prednisone severely suppresses your immune system.. could this be why I still feel so bad and/or could the prednisone be delaying the response of the antiobiotics and they are not working as fast as they should? I have been on the biaxin (100mg day) now since Tuesday) and was on 200 mg Doxy from the 26th until I started the biaxin. Any opinions? Thank you so much...I am so grateful for this site.
Natalie
Posted by cbb (Member # 788) on :
Well, young lady, don't blame your aches & pains on turning 40.
You don't start falling apart until you're at least 60.
Drink lots of water to flush the toxens out of your system. I was told a squeeze of lemon juice in the water helps maintain the acid balance in the body.
This is discussed on pages 24 & 29 of
"Diag Hints & ...Guidelines" www.ilads.org/burrascano_1102.html
If you're taking Biaxin with meals, plan a snack 2 hours later for the acidoph.
The tests that are usually used first, test for antibodies to the Lyme bacteria.
It takes the body 4 to 6 weeks to produce enough antibodies to get a positive test result, so if the test is given too early, it will be negative even tho the person had the disease.
The walk-in clinic may possibly have your records on file. The dr's description of the rash, symptoms & other tests may be helpful to a LLMD.
Unfortunately, this complicates matters.
Don't give the name of your specialist, but what type of specialist is he?
who recommended him?
Tick-Borne Diseases (TBDs) are so complicated!
You need the best dr available, one who has treated many, many cases.
One who has lots of satisfied Lyme customers.
You need to be sure you're getting the best treatment available.
Posted by Michelle M (Member # 7200) on :
Hi Natalie. It's good to see you back "on Board" - so to speak!
http://www.lymeinfo.net/medical/LDPersist.pdf
Posted by HEATHERKISS (Member # 6789) on :
I emailed you about LLMD's in our area.
Posted by KrisKraft (Member # 4329) on :
Hi Natalie,
http://www.openeyepictures.com/underourskin/uos_resources.html
http:www.lymediseasefilm.com
Posted by janet thomas (Member # 7122) on :
ITP means idiopathic thrymbocytopenia-low platelets for unknown reasons.
Posted by NatalieA (Member # 7714) on :
FROM Natalie- the new Lymie!REPLYING TO ALL OF YOU
Everyone- thank you SO MUCH for taking the time to answer my questions, and sending me all that information that is all right there for me to go through..you probably saved me weeks of researching...What a big help that is.
Anyway, yes I believe I did find a good doctor...she has Lymes, and I think her children do as well, so I do think I am seeing an educated doctor.
I am on the acidoph - 2 per day- but didn't know about waiting 2 hrs w./ the antibiotics so thanks for the tip cbb!
Regarding the prednisone--I want off of it, but I guess you just can't stop taking it at once as my platelets might crash again so they need to taper you down.. Although I think it was the Lyme infection ( when I was REALLY sick 2 weeks ago) that caused my platelets to crash in the first place. So it's my opinion that off of steroids, since I'm feeling "better" than before, that my platelet count would be fine without any treatment.. maybe I can convince my hematologist of that sensible theory on Tuesday! I would much rather have less platelets right now, and ghave the abx work to get me over this Lyme- feeling crappy all the time thing!
Posted by BostonLyme2005 on :
Hi Nat,
Rob
Posted by NatalieA (Member # 7714) on :
Hi Rob-- I know this site is great.. I honestly don't know how I would get through this without it, since sometimes I think I am going crazy with every "new" symptom that pops up, then I read a thread that someone else is having it and I feel like I'm not losing my mind after all!
Anyway, it's good to have a site like this to vent to, especially since now I am starting to talk to myself after sitting on my *** for 3 weeks.
Take care,
Natalie