posted
I was just diagnosed on Monday with stage 1 lyme disease. Early last week I noticed a rash on my neck. I ignored it for a few days hoping it was just an allergic reaction to something. I have the classic bulls eye rash. It was obvious to me that a rash like this is something I should be concerned about and since about a week went by with no improvement I seeked professional help. The doctor put me on 1500MG of Amoxcillin a day for 30 days. In 30 days I am supposed to have blood work done. He seems pretty confident that he caught it in time, I sure hope so.
My question is this. What is the success rate in treating this if caught early enough? And will I always have the disease and have to be put on antibiotics for the rest of my life?
I am very nervous about this and I don't know anyone has this disease to talk to and see what the experience is like. Thank God for places like this.
Any advice or help you could provide me with would be deeply appreciated.
Thank you, Larry
Posts: 29 | From New Jersey | Registered: Jun 2008
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posted
Welcome. You are being treated with the same dose that I was treated with. It did not kill the Lyme. Keep notes on how you feel. Are you with an LLMD?
Posts: 183 | From Texas | Registered: Nov 2007
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adamm
Unregistered
posted
The success rate for the "standard" treatments (one of which your
doc's using) is abysmal; it's been essentially prove that that limited a course
of abx cannot cure Lyme. I was given
a similar treatment right after my bite last year, and now, at 18,
am experiencing a form of dementia.
You are taking an enormous gamble
with your life if you don't get to an LLMD NOW. I'll send you the info of one who takes insurance
(these guys are REALLY few and far
between.)
Go to lymecryme.com for al the info you could possibly
Testing for borrelia (lyme) is inaccurate. Your doctor will not be able to tell if your treatment has been effective by testing you after treatment. Just the fact that he thinks he can and based on the treatment you are getting, tells me that he is not an appropriate doctor if you want effective treatment.
There is a battle going on in the diagnosis and treatment of lyme disease. We see a lot of chronic lyme patients who end up here because they were treated with the IDSA (Infectious Disease Society of America) protocol. The protocol promotes treatment that is ineffective for many people. Simply put, not enough medication and not given for a long enough period of time.
In addition, doctors who follow the IDSA guidelines don't test or treat for the many co-infections that ticks pass. You need someone who is willing to diagnose and treat the other infections that ticks pass because many people get more than one infection.
Some of the most often seen co-infections require a different treatment than you will get for lyme disease. If co-infections are left untreated, it is nearly impossible to get rid of lyme.
The IDSA has recently been investigated by the Connecticut Attorney General and have been found to have conflicts of interest and other incorrect behavior surrounding their promulgation of lyme disease guidelines. They are in the process of choosing a new panel to review their guidelines. The new panel choices will be overseen by a medical ethicist.
Most of us would never dream of seeing an IDSA doctor or anyone who follows their guidelines because we know that we will likely not get well especially if we have co-infections.
Please take this seriously and get an ILADS LLMD who will treat you correctly so that you do not have to suffer the way most of us here are suffering.
Infections passed by ticks can be very complex to treat depending on the type and number of infections. Each person responds differently to infections and treatment but your chances of beating this is so much better if you see an LLMD. The sooner the better.
Terry I'm not a doctor.
Posts: 6286 | From Oregon | Registered: Jan 2006
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Please note that most of us on here are 'worst case scenarios' and represent what CAN happen versus what the majority of people may experience with Lyme. Most of us (not all thought) went undiagnosed for a long time which makes our disease far more complex.
My 2 cents...30 days is actually a longer duration of treatment than most traditional doctors would prescribe. For most people that are at your stage of the disease, this will be sufficient. HOWEVER, you just need to pay attention to your body and if days, months or years post treatment you start having issues, don't assume your lyme was sufficiently treated.
If after your treatment you are not feeling better or start developing any weird, new symptoms, seek a LLMD who can provide extended treatment and evaluate you for other infections that ticks can give off.
You caught the disease early and are being proactive....my guess is that this will just be a small blip in your life.
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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Please note that most of us on here are 'worst case scenarios' and represent what CAN happen versus what the majority of people may experience with Lyme. Most of us (not all thought) went undiagnosed for a long time which makes our disease far more complex.
My 2 cents...30 days is actually a longer duration of treatment than most traditional doctors would prescribe. For most people that are at your stage of the disease, this will be sufficient. HOWEVER, you just need to pay attention to your body and if days, months or years post treatment you start having issues, don't assume your lyme was sufficiently treated.
If after your treatment you are not feeling better or start developing any weird, new symptoms, seek a LLMD who can provide extended treatment and evaluate you for other infections that ticks can give off.
You caught the disease early and are being proactive....my guess is that this will just be a small blip in your life.
Kristin
----------------------------------------------
ditto
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
on the positive side, LarryB, my hubby had a bullseye rash 13 years ago and was treated 2 weeks later with abx for six weeks. He did get well.
Sometimes I do wonder about him though: he gets headaches and takes frequent naps -- but he is very active and leads a stressful life -- so it's hard to tell if these are residual Lyme sx, or just fatigue from stress.
I agree with the posters above: ask your doc to treat you longer -- another few months of abx probably wont do you any harm, and may save your life.
Also, you can take supplements to reinforce your treatment! Read Buhners book Healing LYme -- the last chapter outlines herbs you can take for recent bites.
Buhner's herbs will not kill your Lyme but they will strengthen your 'immune pathways' to make it harder for Lyme to survive.
good luck!
Posts: 1173 | From USA | Registered: Nov 2007
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posted
At this point in my treatment, I've only been taking antibiotics for three days, should I still seek an LLMD right away or wait till after my blood test comes back?
Again, I can thank all of you enough for your help. It's a blessing to have a forum such as this. The information on lyme is so varied and different out there it's hard to find any real answers.
Thank you.
Posts: 29 | From New Jersey | Registered: Jun 2008
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
Larry, we were posting at the same time -- see my previous post,above, okay.
I have been ill sixteen years, so don't end up like me -- PLEASE see a LLMD! You can't imagine how your life will change if you don't eradicate this now. It is worth the time and money to see a LLMD!
Do not rely on blood tests for diagnosis. And do not get an ELISA test, only a western blot, through Igenex or Fry.
There's a "sticky" at the top of this forum with info for Newbies. Very good stuff!
Posts: 1173 | From USA | Registered: Nov 2007
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
Larry, looks lie we are still typing at the same time -- woops!
Yes, that's the book. If you don't want to buy it, you may be able to get it at library, if you are up to it.
There are other good protocols too, like Cowden, or Zhang, but i don't have personal experience with those.
Buhner has a website called Planetthrive.com where he answers users' questions (after you read his book, of course)
best of luck, cotton
Posts: 1173 | From USA | Registered: Nov 2007
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posted
Can I get a western blot test from any testing center? My blood tests are being conducted at Quest Diagnostics.
Posts: 29 | From New Jersey | Registered: Jun 2008
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
As far as i know, Quest is not one of the recommended labs. Help, anybody?
You can google Igenex and order a test kit yourself. It will come in a few days. You take the kit to your doctor or nurse, they draw the blood, and you fedex it in a prepaid box back to igenex.
Be careful to have your blood drawn early in the week and late in the day so that it will be fresh for its evening fedex trip and will get to the lab before the weekend -- you don't want your blood sitting in a hot warehouse.
Posts: 1173 | From USA | Registered: Nov 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Larry, I think you are on a low dose of amoxy. This is your ONLY chance to get rid of Lyme and have it not become chronic. I would want to check with an LLMD immediately to see if you're on enough abx.
I was taking 2500 mg. amoxy THREE times per day along with Probenecid to keep it in my bloodstream longer.
The more typical drug for catching Lyme early is doxycycline, 200 mg. twice per day because it works on some of the coinfections along with the Lyme.
Testing is inaccurate. I would get an appt. with an LLMD to be sure you get it all while you're only stage 1. Chronic Lyme is no fun.
Sorry we all sound so dismal, we're trying to save you from what we're dealing with.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Larry,
Quest is crap - sorry , there's no better way to put it.
I was tested twice through Quest b/c I didn't know any better, and both tests were negative even though I was being eatin alive by lyme and co-infetions.
You need to be tested through Igenix Labs, they specialize in tick-born infections.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
I've often wondered this, but what timeframe denotes "early", versus "chronic". I was on low dose abx [200 mg. of Doxy] at the time of the bite [for Acne], but because I was busy pursuing other causes for my symptoms, I didn't get the "high dose" treatment for about 4 months post-bite.
Would you folks say I caught it "early"?
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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posted
I just went on IGeneX website http://igenex.com/ and emailed customer service to see what test kit they recommend. Thank you so much for the advice.
I don't have the blood work paperwork in front of me but I'm pretty sure it's the test you described and not the western blot. I also just wrote a letter to the Lyme Disease Foundation in Connecticut for a referral of someone in my area. Maybe they can help. The dosage I was given was 500MG of Amoxicillin taken 3 times a day for 30 days.
Does anyone know why my doctor wants me to wait 30 days before having any blood work done? I've read that it won't show up in blood tests till after some treatment with an antibiotic, is that true?
Posts: 29 | From New Jersey | Registered: Jun 2008
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
Good job, Larry!
Since you had the bullseye rash, your doc figures he should treat you for Lyme.
then, after 30 days he wants to follow up to see if the bacteria have cleared. DO NOT TRUST the follow-up bloodwork, no matter where it is done.
If you do not hear from Igenex today, then give them a call -- my experience is that it can take them a week or longer to reply to emails.
The panel that i had done was the one for about 245 dollars. sorry, can't remember what that includes. But you definitely want the western blot panel that includes IGm and IGg antibody tests.
IGm will show acute/current infections and IGg shows latent/chronic infections.
The fastest way to find an LLMD may be to go to the SEEKING DOCTOR board on this forum. Be sure to put your state in the subject line so folks can help you.
Posts: 1173 | From USA | Registered: Nov 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
WELCOME, would you like a FREE copy of my newbie package of 120 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.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
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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adamm
Unregistered
posted
A negative test means absolutely nothing, and waiting to get
to an LLMD until your results come back would
be as big a mistake as any you could make in your life.
I second what Lymetoo said--at least 2 months of doxy
at 400mg/day, possibly in conjunction with meds to target the
intracellular and spore forms of the bacterium.
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Larry,
Just to be sure we are clear in what we are all saying. The bulls eye rash is PROOF that you have lyme disease. That's why your doc is treating you for lyme.
However, the tick could have given you (and usually does) many other diseases. So, you need tested for them. They are called lyme co-infections.
Each co-infection needs a different treatment. Tests for lyme and co-infections are not reliable, so you need a lyme doc (someone who has treated many, many cases of lyme) to decide (what they call "making a clinical diagnosis") what infections you really have based on your symptoms and an exam and medical history and your response to treatment.
Please get the Joseph Burrascano lyme treatment guidelines and read and study them so that you become educated about the disease that you have. Here is the link:
Be thankful you got the bulls eye rash. That allows you to catch this thing early. But, as you will see in the Burrascano guidelines, high doses of antibiotics are necessary.
Generally, a PCP will not provide you with the doses recommended by Burrascano. You will need a LLMD (lyme literate medical doc) to do that.
Posts: 9931 | From Maryland | Registered: Dec 2007
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quote:Originally posted by TF: Just to be sure we are clear in what we are all saying. The bulls eye rash is PROOF that you have lyme disease. That's why your doc is treating you for lyme. .....................
Be thankful you got the bulls eye rash. That allows you to catch this thing early. But, as you will see in the Burrascano guidelines, high doses of antibiotics are necessary.
Generally, a PCP will not provide you with the doses recommended by Burrascano. You will need a LLMD (lyme literate medical doc) to do that.
YES, YES, YES!!! I meant to include the fact that further testing is not necessary at this point EXCEPT for coinfections, which are quite likely.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
So far I have had no luck finding an LLMD in my area. One of the places that did look promising a place called the Lyme Disease Treatment center right in the town that I live in I called today and the phone was shut off. So I did some further investigating on this center and the doctors that ran are undergoing an investigation.
I will continue to look further. The responses I have received and information has been great and at the same time overwhelming. I am just trying to sift through all this. Posts: 29 | From New Jersey | Registered: Jun 2008
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posted
Doesn't Dr. Burrascano practice in Maryland?
If so that is about a 2 hour drive for me....just checking.
Posts: 29 | From New Jersey | Registered: Jun 2008
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
Larry, many of us drive or fly for hours to get to an LLMD. If you have to take a train or bus, carpool, or pay somebody to drive you, you MUST do it, whatever it takes.
I dont think Dr B sees patients anymore. (am i wrong, anybody?)
If you want to drive to Rockville, MD, i can tell you my LLMD's name, just PM me.
I agree totally with the folks who advise not spending your money on the tests yet -- sorry, i should have thought of saying that earlier.
It is not uncommon for decent knowledgable LLMDs to be run out of town or persecuted in other ways. I don't know anything about the LLMD you mentioned -- yikes! --
the LLMD may not have been at fault at all -- may have been victimized, persecuted -- that's common too, sadly.
there's so much to learn with Lyme and Co's! Keep us posted on your progress.
Posts: 1173 | From USA | Registered: Nov 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Dr. Burrascano has retired from his practice in New York (Long Island) and is now speaking around the country and in other countries and doing lyme research. Doctors can still consult with him, I am told.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I pm'd you with my llmd's name in NJ. Hope this helps!
Posts: 871 | From NJ | Registered: Mar 2007
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Larry,
You are missing the opportunity to save your future. Ask questions later, but first get that LLMD appointment. When you call, tell them it is urgent. That you VERY recently had a bite and need immediate treatment to avoid becoming chronic. Waiting for tests and trying to learn all of this before taking action could land you here on lymenet for a VERY long time.
An LLMD will know proper testing, labs and antibiotics. If you wait to learn all you need to know it will probably be too late for a complete cure.
I hate to scare you but really just trying to save you from a lifelong battle that really sucks.
Get to an LLMD.... there are several in NJ, NY, CT. Charge it on your credit card, take a loan do whatever you have to. You will be thankful you did it. Be sure the doc you see is associated with ILADS ( be sure it is not an infectious disease doc that treats by IDSA guidlines).
I am sure your family doc is well meaning but you really, really, really, need someone with far greater experience.
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
I just scheduled an appointment today with a Doctor L in Maryland based on a forum members recommendation. They were very nice and helpful and scheduled me for July 8th.
On a side note I've only been on antibiotics for 4 days now. I noticed this morning when I woke up that I had a terrible headache, which is not unusal I've had headaches before. Now I am sitting at work and I am feeling hot flashes and getting kind of clamy or sweaty. It only last about a minute or two but it has been off and on for the past hour now.
Is this common early on in treatment? Is it the treatment that is causing this reaction? I am not so sure I am going to be able to concentrate on my job here today if this keeps up. I just hope my work understands.
[ 05. June 2008, 03:49 PM: Message edited by: LarryB ]
Posts: 29 | From New Jersey | Registered: Jun 2008
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I'm Like you, new to the board and trying to learn as much as I can so I could get better.
Unlike you, I did not start treatment as early as I should. Back when I tested sever months ago, I had no symptoms which could be attributed to Lyme. The doctor and myself thought that the positive Elisa and indeterminate western blot were indicating prior exposure and that I did not have an active case.
Into late Winter and early Spring, my aches began and again at that time the doctor attributed it to my body adjusting to thyroid medicine.
What a mistake as I have a later found out. It seems that I do have Lyme and maybe a co-infection. I started treatment w/ LLMD too late.
DO NOT MAKE THIS MISTAKE!!!
Posts: 69 | From New York State | Registered: May 2008
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The reason you are feeling lousy after starting treatment is probably due to the medicine killing off the bacteria creating additional toxins which your body needs to clear.
This is called the "Jarisch-Herxheimer" reaction which is a good sign that your body is fighting.
Make sure you tell your doctor everything you are feeling. Some people keep daily notes to track improvements.
Good Luck
Dave
Posts: 69 | From New York State | Registered: May 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Larry,
Please edit your most recent post to remove the doctor's name. We don't allow doctors to be named on this public forum.
Near the top of the "Medical Questions" threads, you will see the one that states this rule. They want you to just use the initial of the doc's last name and you can use state also.
To edit, click on paper and pencil icon at the top of YOUR post. That let's you change the post.
Thanks.
Posts: 9931 | From Maryland | Registered: Dec 2007
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
You having a Bullseye rash is 100 % proof you are infected --
The medicine of choice now seems to be Doxicycline 400 to 600mg spread threw the day-
for at least 6 weeks -
My sister in PA. got bit - saw the bullseye and went on 400mg aday for 6 weeks- years latter she is Fine - Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
Sorry about mentioning the doctors name I had no idea and edited the post.
So I had to leave work ealry today which really sucks. I finally spoke with my primary care physician on the phone about extending my antibiotics and he said he will which is good.
The thing that concerns me though is now he wants me to have a blood test immediatley instead of waiting a month? Everything I've read states to wait until the treatment is kicking in. Is he right or wrong in this? Also, when I mentioned an LLMD he said that's not for stage 2 or stage 3 lyme. I said well Doctor I would rather it not get that far. He said when you come in to my office we will discuss your concerns. I mentioned the Herx and he seems to think it's not that.
I'm still going to my scheduled appointment on July 8th regardless. And I will here what he has to say tomorrow when I visit him.
Can anyone provide me with a good list of questions to ask him so that I go in there prepared?
Posts: 29 | From New Jersey | Registered: Jun 2008
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My IgM titers show a positive P31 and an IND P39. My IGNEX labs say that a positive P31 can occur when you have had EBV, which I have had recently.
My symptoms are consistent with both EBV and Lyme. The treatment is very different. EBV can be treated with Valtrex. I'm trying to decide which route to try first, or if I can do both at the same time.
Anyone have knowledge or personal experience similar to mine?
Posts: 13 | From PA | Registered: May 2008
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
Maria ROsa, definitely go after the Lyme first, or at the same time as EBV.
Lyme can cause your EBV titers to elevate. Once you treat Lyme, your EBV titers **may** fall because your immune system may be able to squash the EBV on its own.
i take valtrex for ebv -- don't think it helps much.
editing to add: if you have elevated HHV6 along with EBV, then antivirals may be called for immediately
Posts: 1173 | From USA | Registered: Nov 2007
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Over a month is a looonnnnnnnngggg time to let the lyme bacteria disseminate. DEFINITELY keep your LLMD appointment in July. In the mean time see if the LLMD can get you in for a short visit just to give you a proper dose of abx and the proper abx .......
Tell them you had/have the bullseye, it was VERY recent and your afraid of giving the Lyme a month to disseminate. Really could GREATLY change your outcome.
I wold keep calling around LLMD's and get in ASAP!!!!! Get more recommendations and take the earliest appointment you can get. IT IS VERY IMPORTANAT YOU TELL THEM IT IS A NEW BITE AND YOU HAVE THE RASH!! After you get what you need now you can be picky about which LLMD you see. For now you just need the proper treatment.
Don't let the chance of cure pass you by .... please be persistent for your own sake.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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quote:Originally posted by cottonbrain: Maria ROsa, definitely go after the Lyme first, or at the same time as EBV.
Lyme can cause your EBV titers to elevate. Once you treat Lyme, your EBV titers **may** fall because your immune system may be able to squash the EBV on its own.
i take valtrex for ebv -- don't think it helps much.
editing to add: if you have elevated HHV6 along with EBV, then antivirals may be called for immediately
Ditto!!!!
Maria... There isn't a "P" before the bands. Don't know where that came from??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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quote:Originally posted by robi: Tell them you had/have the bullseye, it was VERY recent and your afraid of giving the Lyme a month to disseminate. Really could GREATLY change your outcome.
.......................
Don't let the chance of cure pass you by .... please be persistent for your own sake.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I suggest you not ask him any questions since you almost certainly know more about lyme than him at this point.
And, don't give him the name of the LLMD.
The doc is now worried about covering his butt--that's why he wants to do the blood test. He wants to do the "standard medical practice" so that he doesn't have to worry about malpractice.
I sent you a private message with more detail.
Posts: 9931 | From Maryland | Registered: Dec 2007
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