posted
Hi I'm new here from Ohio. I just talked to my doctor about running a lyme test today, and thank God for a good doctor, he sent me for lyme titer blood test. I was diagnosed with sle lupus about 2 years ago, but am highly suspicious that it could be lyme. I talked to the rheumatologist who diagnosed me about having a tick attatched to my head for 24 hours before realizing it was there while we were on a 3 wheeling trip in Southern Ohio. We rode through alot of wooded area. I remember the next day scratching my head and saying ***!!! i didn't know one thing about lyme disease then, so i made sure to get the whole thing out of my head and discarded it....stupid i guess. Within the next 4-6 all of the following symptoms occured...I got a round sore, itchy, circular rash under my right armpit, i experienced numbness in both of my hands and arms that was painful and tingly at the same time...so bad that it would wake me from my sleep. I started having horrible joint pain, started in my smaller joints and moved to every joint in my body. Knees and ankles were worst. After waiting 3 months to be seen by a rheumatologist, I had full body xrays showing osteoarthritis in my left knee. I also remember lying on the bed and feeling irregular heartbeat, palpatations? thumping so hard against my matress...I was so fatigued that while my husband was at work I pretty much limped to the kitchen and put food on plates on a blanket on the living room floor at the foot of the couch so I could keep an eye on my 3 yr old twin girls while they were eating, if I could stay awake. Within the past two years, my symptoms have let up considerably....I am not sure if I really do have lupus and am in remission, or if it was lyme or something else.... My questions are.....would testing the blood for lyme antibodies 3 yrs after the bite be acurate? if the tests come back negative, what would be the next step to completely rule it out? thanks, I appreciate any and all feedback, I pray I am on the right track.
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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posted
I meant to say within 4-6 months following the tick bite I had all of those symptoms....
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Kristy,
Many here have eyes that spasm or other eye/brain problems that make it difficult to read solid blocks of type. I'll break it apart and repost so that more can read and reply. When you compose future posts, it helps our eyes if the spacer bar is used between thoughts/questions. Thanks - and good luck.
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Kristy wrote:
Hi I'm new here from Ohio. I just talked to my doctor about running a lyme test today, and thank God for a good doctor, he sent me for lyme titer blood test. I was diagnosed with sle lupus about 2 years ago, but am highly suspicious that it could be lyme.
I talked to the rheumatologist who diagnosed me about having a tick attatched to my head for 24 hours before realizing it was there while we were on a 3 wheeling trip in Southern Ohio. We rode through alot of wooded area. I remember the next day scratching my head and saying ***!!!
i didn't know one thing about lyme disease then, so i made sure to get the whole thing out of my head and discarded it....stupid i guess.
Within the next 4-6 [months] all of the following symptoms occured...
I got a round sore, itchy, circular rash under my right armpit, i experienced numbness in both of my hands and arms that was painful and tingly at the same time...so bad that it would wake me from my sleep. I started having horrible joint pain, started in my smaller joints and moved to every joint in my body. Knees and ankles were worst.
After waiting 3 months to be seen by a rheumatologist, I had full body xrays showing osteoarthritis in my left knee.
I also remember lying on the bed and feeling irregular heartbeat, palpatations? thumping so hard against my matress...
I was so fatigued that while my husband was at work I pretty much limped to the kitchen and put food on plates on a blanket on the living room floor at the foot of the couch so I could keep an eye on my 3 yr old twin girls while they were eating, if I could stay awake.
Within the past two years, my symptoms have let up considerably....
I am not sure if I really do have lupus and am in remission, or if it was lyme or something else....
My questions are.....
would testing the blood for lyme antibodies 3 yrs after the bite be acurate?
if the tests come back negative, what would be the next step to completely rule it out?
thanks, I appreciate any and all feedback, I pray I am on the right track.
Kristy. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- If you just had blood drawn TODAY (a Friday) for a Lyme test . . . it is likely NOT going to the correct lab as the best lab for testing will not accept blood that has just been sitting around for a weekend.
A lyme titer blood test (ELISA) is NOT a good test.
You "got a round sore, itchy, circular rash under [your] right armpit" with your symptoms, that is pretty clear but you really need to see a specialist.
You should also be assessed for other tick-borne infections.
This explains WHY you need an LLMD - an ILADS-educated or ILADS-member doctor so they have the required knowledge (even if they have their own methods).
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 this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
. . . "With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years. Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
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.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You said you were dx 2 years ago with SLE/lupus.
Were you given any kind of steroids? If so, be sure to let a LLMD know all the details (type, length, results). Actually, it's best to write out and hand list to your doctor of all your lupus treatment - or other treatments along the way.
Are you on steroids NOW ? If not, unless for a life-threatening condition, it is best to avoid as steroids can make lyme blossom.
Also vital to avoid: all artificial sweeteners and MSG. Pure stevia is okay (but read the label as many are not what they say they are).
Alcohol, too, is to be avoided (as the liver can be very damaged from lyme and alcohol makes it much worse). Do enjoy good healthful foods, though. It's important to get good nutrition.
I hope you can find a good LLMD soon. It's a lot to take in, so just be sure to take care of yourself during this process.
=========================
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:
posted
Well, God bless you and thank you for all of the information. I do suffer from brain fog, so it's a little scary to think about reading it all and retaining it...yikes.
After being diagnosed with lupus, on my birthday I might add, in March of 08, I was put on prednisone and plaquenil. I had a horrible skin reaction to the plaquenil and was taken off all meds while recovering from that with IV doses of steroids. I never did go back on anything to treat the lupus.
I did start swimming, walking and did change my diet. I started weight watchers and followed a very healthy diet. I have fallen off the wagon and am not doing much exercising or healthy eating.
I did recently start a product called reliv. it's a powder that you mix in your drink that provides your body with 100% of your daily needs of vitamins, minerals, nutrients....My doctor's wife is the one who suggested it.. and it is helping me feel quite a bit healthier. I can definately tell if I forget to drink a shake. you can look at it if you're interested at reliv.com
I forgot to mention that not only did I have a circular "bullseye" rash on my armpit...I did get one on the backside of my knees in that crease. I just happened to see a pic of a bullseye rash on another person in the exact same place. I also have a terrible time with anxiety, which I take ativan for as needed. Brain fog is horrible and I cannot concentrate well at all....I'm thinking you probably already know this by reading....lol
I am hopeful that my doctor will continue to do testing if this inital test is negative. He seemed to think that treatment would have been the same whether i had been diagnosed with lupus or lyme.....i did see that some of the treatment is the same....but if he just wants to stop the testing, I will probably pursue a LLMD as close to Ohio as I can get....never heard anything yet on a doctor nearby....I posted yesterday under looking for a doctor...
I appreciate your help tremendously!
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- No, your treatment would not have been the same. You should have never been given those steroids with the presence of two bulls eye rashes and symptoms of lyme.
Very clearly: You need a NEW doctor.
Your doctor has done you a huge disservice. Huge. You current doctor does not have the knowledge required for the proper testing and he gave you treatment that is contraindicated for lyme. You need to find a good LLMD who has experience and knowledge.
We've seen this a million times. I bet the doctor is a nice guy. But he is not capable of treating you, apparently, from the history you describe. You need a true lyme expert. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I do know that if I don't take matters into my own hands, I could die from a horrible flare...I have 5 kids who desperately need their momma.
am I right about the bullseye rash behind the knee, is that a common place for them, or can they be anywhere?
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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Keebler
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posted
- Anywhere on the body - does not matter where the rash is/was. A bulls-eye is a bulls-eye.
Oh, it is best to avoid all aerobic exercise until you get this straightened out. In the presence of infection, aerobic exercise can cause heart damage.
Gentle non-aerobic exercise is good as you can best do without exhaustion as a payback. It is still important to move your body often, just not getting your heart rate up.
More about that is in the self-care portion of the Burrascano guidelines noted in a post above.
=============
Background regarding aerobic exercise in the presence of infection:
[Post-polio expert] Dr. [Richard] Bruno points out that physical over-activity is the biggest cause of post-polio symptoms. [3] (See Dr. Bruno's "Fainting and Fatigue" in the Spring 1996 CFIDS Chronicle, page 37.)
EXCERPT:
when mice infected with Coxsackie B3 were forced to swim in a warm pool, the virulence of the virus was drastically augmented.
In fact, viral replication was augmented 530 times. This did horrendous things to the animals' hearts.
We all know that to play squash with the flu can lead to heart attacks. Much the same danger can be courted by undertaking hard exercise with M.E. [what CFS is called in the UK.]
. . .
In 1988, Reyes and his colleagues exercised mice suffering from Coxsackie B3 myocarditis -- inflammation of the heart muscle caused by the virus.
They showed that the effect of exercise on the production of the neurohormones which regulate immune response and inflammation led to an increase in susceptibility to Coxsackie virus infections -- the host response was altered in favor of the virus. . . . .
. . . Cont'd at link above. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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. . . 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:
. . . 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). . . .
. . . "Steroid Disaster" is a term coined by the pioneer of Lyme Treatment . . .
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!
. . .
Dr. Burrascano makes it clear in his treatment guidelines that steroid treatment is detrimental, these are excerpts from his guidelines:
"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.
The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressants medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressants medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids."
An easy explanation. Your immune system are the "soldiers" of your body constantly standing by to attack any foreign invader.
When an immunosuppressant is used, it is like killing off or knocking out most of your "soldiers", now your body is open to all foreign invasion and while your immune system is knocked out, those invaders can go anywhere, your heart, liver, brain - everywhere.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Now, after all this I can only assume you are distressed. I am truly sorry. I've been there. I suggest taking a short break - getting out into nature and having a giggle with your kids.
Then, post in Seeking Doctor and contact your local support group.
That will set you on track. One step at a time. Put on some nice music . . . be sure to enjoy the beauty around you at all times.
Best of luck to you - and hugs, too! -
Posts: 48021 | From Tree House | Registered: Jul 2007
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initially I asked my ENT DR to do a lyme test, as I was so ill and not convinced of the diagnosis I had been given and he requested "lyme titer".
I knew it wasnt his specialty but he was doing me a personal favor...and I didnt know anything about lyme then...
it was neg so I carried on with the diagnosis given, with steroids as treatment !!!....
continually getting worse, until 2 1/2 months later when a different doctor did the western blot and that was positive !!
unfortunately I was further into it, had been in hospital twice and given a bunch of meds I didnt need......
I would request further testing and seek out a DR that knows what they are doing.....good luck
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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posted
I sure will! I have our curtains open here in Ohio and we are geting anywhere from 3-5 inches of snow today....yuck...it's pretty but really cold. I don't know what to think....if I could have anything take the place of the SLE lupus diagnosis I probably would.
When I was diagnosed, I searched online and stumbled upon really wrong information....I read that more than likely I would die from it. later I got a grip....but it was a very horrible time for me. My youngest twins were 3 and i had a 4 year old and boys 10 and 12.
Since then, I have found out that lupus can kill you but it is possible to live a long life....quality, eh not so sure about that....sick alot.
I know god's in control, and I think he gives us a good mind to use it....he gives us hints and thoughts along the way so that we can take care of our bodies....he may have sent me here.
I do think that regardless of the result, I am going to find a way to go further with testing for lyme.
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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posted
Kristy, I have to chime in also now...Hi Flo. (:
I too, went to Dr and had 2 test done (both came back neg) so I too continued on thinking ...well it can't be lyme
I too was on steriods (for what we thought was sinus infection).. which just about killed me---made me MUCH worse..
I ended up with a 6k hospital visit and still continued to get sick.
It wasn't until I finally watched a special on my local news station (our local anchor has lyme) about Lyme and did my OWN research...found my LLMD and got a western blot done was the TRUTH FINALLY uncovered.
Sweetie, YOU MUST be your own advocate... DO NOT GIVE UP!!! DO NOT let main stream Doctors lead you astray....
No matter how nice your doctor is (I have a wonderful MD that I love but he just doesn't understand the TRUE concept of Lyme)
Find you a LLMD.... I'm not great but Im SOOO much better than I was before I started my treatment in APRIL 2009.
Good luck and God Bless you in your endevor to get to the root of this.
Karen
Even though this is a confusing disease the more you learn the more the "pieces" will start to fall in to place as to why you feel the way you do and whats going on. Posts: 423 | From Virginia | Registered: Nov 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
- Kristy,
PHOTOS ?
Do you have photos of your bulls-eye rashes? With the rash, you don't even need a test.
Of course IDSA doctors want a current rash (and they'd never trust a photo which is, to a point, somewhat understandable) but if you have proof of the rash, you may not need other lyme tests - but you WILL need tests for other tick-borne infections and if money is an issue, the coinfections may be the best investment.
Remember, lyme is a CLINICAL diagnosis. History, physical presentations and symptoms . . . no diagnosis should be made solely on the basis of a test, anyway.
Still, go back through your records and see if you can find photos that you may have taken. It would help.
As soon as the the ELISA results come back, you can ask for a copy to be sent to you. No need to go in for results. It's a sure bet it's negative. 99.9% of the time, even with a glaring bulls-eye rash and severe symptoms, the titer test is a wash-out.
You should also sign a release form and get a copy of your entire file from your current doctor, sending to directly to you. Do not tell them why, just "for your personal records" should suffice.
I'd not "burn your bridges" - just in case the ELISA might show positive (by some miracle) or if you need your current doctor for back-up care once you find a good LLMD. You can simply tell your current GP that you are seeking a second opinion from a specialist. If he is a good man, he should be okay with that. If not, just don't return.
At first, do NOT tell your GP the name of your LLMD. Do not tell anyone in his office. I'd not even whisper the name when you are out eating. I know this sounds odd but LLMDs are under tremendous scrutiny right now and the IDSA and insurance companies are trying to stop them from practicing. They want to discredit even the existence of lyme as a chronic infection.
Only if you need your GP to order basic monitoring tests would you share the name of your LLMD. Many LLMDs are turned in by GPs and their licenses are challenged. So, until you can "read the waters" keep quiet.
Please be advised that in most likelihood, you will not be able to convince or educate your doctor about this. Don't even try. But, if his services can be a back-up for routine tests, etc., that would be good. I also think it's good to be on friendly terms and let him know at times along the way your progress so that he may learn from this experience.
But it will take time and his open mind - but also - freedom from the medical board in your state. Ohio is not one known for their lyme awareness in normal medical circles. He may have pressure from his bosses to ignore lyme - that happens in many states, sadly. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Sorry for so many posts. It just struck me that you may be using your real first and last name here. That could cause big trouble with your insurance company - and for other reasons of security.
If you are using your real name, you might contact the web master to see how to change that. You would post over in computer questions and ask how to erase all record of your posts her with your full name:
posted
thank you guys for the "heads up". You know it really is all so sad that a person has to go through so much when you are sick! It's also sad that the doctors who are trying to help are being put through all of this.
When I see all the work it takes to try to become "well" it is overwhelming...when you are extremely fatigued and have horrendous brain fog, it just makes you want to lay down and quit.
UGGG! soooo frustrating!
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- Rather than lie down and quit - lie down and REST. Repeat as needed.
This can get better. It's a lot to take in. Find a doctor, get your support group going for connections and education and just take care of yourself. -
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