I am in desperate need of some answers.I am 33 Yrs old. I went to see my Rhumetologist because I was in a ton of pain and tremendous Fatigue. He told me that I "kind of tested positive for Lymes" He started me on 3 weeks of Adoxa. If some one can help me read my test results from Lab Corp.
Lyme AB IgM by WB IgM 41 Present IgM 39 Present Igm 23 Present Lyme Igm WB Postitive
Note MY EBV Epsteins Barr count was 3,227 I have been sick for years and have been told many times that it is in my head. Can this really be what I have?
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Yes. Your Lyme Western Blot was positive IgM. By LabCorp no less!
Looks like your EBV tieter is very high as well which probably adds to your symptoms.
I would suggest going to SEEKING A DOCTOR and post for a lyme literate doctor in your area. This will be the doctor who can lead you on a path to wellness.
I don't think that the Rhumey will get you there and I have never heard of Adoxa for the treatment of Lyme. Maybe others have.
Welcome to the board! Others will be along to offer more advice I am sure.
Good Luck, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
posted
Sounds like the "Lyme" is attacking you at the same time as the virus. Please look into going to a good LLMD - Lyme Literate Medical Doctor.
And, I am new to this too, but I went to see a local Infectious Disease guy, please don't bother, only LLMDs believe in lyme disease.
I am suprised your rhumy even ran the test and told you it was "kinda" positive. They normally don't want to have anything to do with Lyme Disease.
Kind regards, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi scoops,
Welcome to the board!
Yes, you are positive for lyme. Adoxa is a brand name of doxycycline. Unfortunately, 3 weeks of doxy isn't going to help you alot.
Your Dr will declare you cured after that time and tell you that is all he can do for you and you will be fine.
You are about to learn alot about lyme disease (Borrelia burgdorferi infection or Bb).
99% of Dr's do not understand lyme. They do not know how to recognize, diagnose or treat it. At least you had a positive test from LabCorp...that's a little miracle.
Run, don't walk to a good LLMD. Go to Seeking a Dr here as was mentioned above and post.
Lyme patients end up paying out of pocket for alot of our care because otherwise you won't get more than 3 weeks of treatment.
It literally takes months and sometimes years to recover....but at least you now have an answer and some hope!
A good LLMD will have to address coinfections also. Ticks also carry alot of other diseases like Babesia, bartonella, ehrlichia and others.
There are many good resources listed at the top of the list of posts here...newbie links, etc.
Start reading and post your questions.
Welcome again, this board is great and there are a ton of really wonderful and knowledgable people here.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
Thank you so much for responding!!! I pushed for the RA Doc to send me to an Infectious Disease dcotor. When I called them they said he is familiar with lymes. I am going there tomorrow. I would not say that I am excited, but happy to finally know that I am not a basket case! Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
| IP: Logged |
posted
One more note. when I went to the RA doctor because I was having joint pain, he called back back because of the blood work. He told me about the lymes. He said that however he was thking more towards fibromyligia and that the 3 weeks of Adoxa should clear it all up.
Now that i have doen further research I am more aware of the Lyme Disease symtoms and cannot imagine that a doctor never pciked up on this. All of the signs were there. Now I am just wondering what I am in store for. What should I expect to feel?
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You were actually very lucky that your Rhumetologist at least tested and gave you a basic start. Three weeks' treatment with a single drug is not enough to treat lyme, though.
I had to look up Adoxa. It's doxycycline. Three weeks is a decent beginning but you will need longer treatment, for sure.
In the meantime, read about using this med. You need to stay out of the sun and avoid dairy products around the time of the med, etc.
If the ID doctor (Infectious Disease) doctor said "he is familiar with lymes" is is not. Any doctor who has studied this knows there is no "s" on the end.
Still, 99% of the time, an ID doctor causes far more harm because they are normally locked into the IDSA guidelines and they really think lyme is no big deal.
As it's now 5 pm in New Jersey, it's too late to cancel your appointment for Thursday. So, I guess you have to go.
My suggestion, then, is not to focus on lyme but just present yourself, your tests and see what he has to say. LISTEN. LISTEN intently.
I would not try to argue and you may actually get some benefit if you are very lucky. Still, take what this guy says and go home and think about it. Then you get to decide just whose hands you might want to put you life into.
Now, the reason I say to LISTEN first is that, maybe, just maybe you might get lucky. Once in a blue moon (a VERY rare blue moon) there is an ID doctor who is familiar with ILADS research and follows that more so than the IDSA.
AND - regarding your EBV, the ID doctor may be of some help.
Also, for curiosity, be sure to ask about testing for other tick-borne infections such as babesia, ehrlichia and bartonella.
Do not expect that you'll be greeted with open arms. But, don't go on with your guns drawn just in case this might be a good guy (since you can't cancel at this time, anyway).
And, if you do find he's an ID - IDSA died-in-the-wool kind of guy, it's really in your best interest not to challenge that beyond, maybe showing one article and I'd choose the one about what can happen if treatment is not adequate:
Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis
---
Why I suggest not arguing is that most LLMDs are under fire. It's best that they can do their work low key. Some doctors who challenge proper treatment actually make a lot of trouble for the LLMDs who go out of their way to provide the best treatment possible.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
Thank you for the in depth information. Unfortunetly I was on vacation only 1 day after my diagnosis and was exposed to the sun. I had an allergic reaction and am now on Prendisone on top of everything else.
I have will go to the appointment tomorrow with an open mind my mom and a recorder! I already called a LLMD in my aea and they do not accept any insurance. can you imagine that? 300.00 up front! I will call the others tomorrow and hoep for better luck.
I have a few questions. The first is regarding Provigil. The RA doctor gave it to me to stay awake at work. is this safe to take woth Lyme? The 2nd one I guess is what else should I expect to feel besides joint pain. forgetfulness.
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Oh. no o oo o. I wish that had not happened. And I really hope that you are still on some sort of antibiotic (abx).
I do not mean to alarm you, however, steroids must be avoided by lyme patients. Prednisone is a steroid and can make the lyme much worse ! So, that is why staying on an abx is essential if you must be on steroids, but without the advice of a LLMD about specifics, it's a shot in the dark.
How long have you been on Prednisone? It's not safe to just stop it but I have major concerns with your taking it - when are you to stop and are the doses being reduced along the way ?
Who prescribed that for you? Did the prescribing doctor KNOW that you have just started lyme treatment ?
Did the MD - or pharmacist - who gave you the doxy give you written instructions about staying out of the sun? They both should have done that.
Are you still taking the doxycycline or another antibiotic? I hope so. If so, that might help.
Please let us know.
====
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
From: Lyme Disease 1991: Patient/Physician Perspectives from the U.S. and Canada - Lora Mermin, editor
by John Drulle, M.
Excerpt:
. . .
"Steroid Disaster" is a term coined by the pioneer of Lyme Treatment, Dr. Burrascano (see link at bottom of page).
Corticosteroids are immune suppressants, the last thing a Lyme patient needs is to lower immunity.
Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants .
Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.
Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.
It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.
Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix!
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids.
. . . .
From page 12:
Excerpt:
. . .
More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
. . . .
Page 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example).
---
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I have 4 more days of Prendisone and 1 week of the Adoxa left...
It was a 6 day plan of steriods. 6 pills the first day, 5, 4 etc.. This was prescribed by the Ra doctor. Damn!
I will tell the doctor tomorrow. I am sure how to stop the Steriod. I had a feeling I should not be taking it....
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
| IP: Logged |
posted
Oh no! I just thought of something. He also gave me a steriod shot in my back for pain....
Another reason why I need a good LLMD. Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
When did you get the shot in your back? Are you sure it was a steroid?
I cannot advise you on this since I am not a doctor but do not stop any steroid suddenly. They are to titrated down, so to speak and it sounds like your instructions are doing that.
Be sure to discuss this with the ID doctor tomorrow. I think you will clearly need a new Rx for antibiotic to cover the steroid mix-up.
If you call to schedule an appointment with an LLMD, it is important that you tell them about the shot and the prednisone and remember to put that in your first appointment notes at the top as that will make a difference in your treatment protocol.
This will work out, and glad that you know now rather than later - also glad that you are at least still on doxy.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Oh, I think some lyme patients are taking Provigil. You can search for threads about that. I know nothing about it.
-
And, I am so sorry to say this but most LLMDs do not take insurance because insurance companies will not cover longer appointments as required for such a complex condition as lyme/TBD (tick-borne disease).
Still, there are a very few LLMDs who do take some insurance plans. You can contact your local support group and see what others near you have to say.
Be sure to post in "Seeking Doctor" - and note that you prefer one who might take insurance.
Not to scare you but when I went to an ID (infectious disease doctor) he asked me what was wrong. I told him all my symptoms first, and then showed him the CDC positive Lyme WB IGM from Igenex.
He said, I have had so many people come to me and SAY that they have lyme. If you really have lyme, go to the hosptital next door and let them draw your blood, if they say you have lyme, I will put in a PICC line for 28 days of rocephin.
Of course he did a less reliable test, the ELISA and it said I was negetive. I asked him what bands were positive and said that band 41 was a very prominent lyme band along with 23-25, which I had positive.
He didn't know. He couldn't even tell me what Lyme test he had run. I had to go to the hosptital to find out that they didn't even run the WB, it was a waste of 2 trips out of town for this guy.
Don't waste your time on a ID, go to a LLMD.
Kind regards, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
In light of that - and what we all would normally advise you - if you want to cancel, you might call the ID doctor's office first thing in the morning and see what their cancelation policy is.
Some won't allow same day cancellations without a penalty. Others might (cough, cough).
Is there any way you can contact your area lyme support group tonight and ask about this guy so you know more?
--
And, oh . . . I popped back as you might need to know this:
Some ID doctors (more more neurologists) also insist on doing a lumbar puncture (spinal tap).
Do NOT let them do this. It is not a good test for lyme.
I know it is. All I can say is the people on this board have been where you are.
ID doctors are just not the route to go. And, you can go, but you will eventually have more medical records piling up that say you don't have anything, it is all in your head because doctors don't believe in lyme.
I have had lyme for 20 years, I just found out last year, because you supposedly couldn't get lyme in NC or in Florida. Which is where I am, born in NC for 20 years, now in Florida and I am 36.
I have been trying to find out what was wrong with me since I was 19 years old and having severe migraines.
Good luck to you.
Your best bet to get some quick information under your belt is the Dr. Burrascano'sTreatment Guidelines (2008). That isn't too terribly long, but will give you enough to understand why we are telling you not to go to any doctor other than a LLMD.
And, if you do go to the ID, let us know what he says. I made my doctor send me to a ID and it was aweful...anyhoo...
Good luck!! Shalome
Posts: 893 | From Florida | Registered: Dec 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)
Printer-friendly view of this topic