posted
Hello, I am hoping someone can answer this for me
I was tested this past Saturday for lymes and the Nurse called me today from the doctors office and informed me that they were sending me
to a infectious diseases doctor because everyone is stubbed on my results.
MY titer came back at 2.52 but my Igm past and present came back negative.
Does anyone know what is going on? has this happen to anyone?
I am so tried of my test always being on the edge of things, it's either on the boarder line or it does not show up.
Now I have this confusion. I have all of the symptoms of lymes, which also are of MS.
Please an advice would really be nice, I m about to lose my mind.... I am so ready to give up I cannot stand the pain anymore..
The other thing is I NEVER NEVER get a cold and I hardly ever get the stomach flu so I have a very strong immune system and I wonder if that is what causing al of this problem.
I have vision problems, back, neck, feet problems, chronic pain, Myofascial pain, fibro, OA, DDD, carpal tunnel, tennis elbow, TMJ,hip bursitis, bone spurs all over my body,
loss of memory, pins and needles in hands, arms, face, neck, legs, feet, balances issues, Mild Serve Stenosis, planters factices (sp?). There's more can't think right now.
So if anyone can help please need to know if this has happen to them.. Thanks in advance
Posts: 52 | From Ohio | Registered: Oct 2013
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gmb
Unregistered
posted
Post an entry in "Seeking a Doctor" and at least get leads on LLMD's in your area.
Then get a copy of the lab report and post the result here and someone may be helpful. A diagnosis is based on symptoms and an Infection Disease specialist will not be too helpful.
BTW - I never get a cold or flu anymore either and my immune system is shot.
posted
So how long are you going to screw around with their messy tests?
Perhaps its time to find a doc that is familiar with dark field live blood microscopy. They can look at your blood under the microcope and see if lyme or its cysts are there. No more guessing games.
Posts: 803 | From USA | Registered: Oct 2013
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I agree with gmb. I didn't get a cold in over a year. It was because my immune system was too weak to realize that it needed to fight.
I got my first cold about a month ago and was very happy because it meant my immune system tried to fight off something.
It might clear up some of your confusion. The tests are not reliable.
Carmen: if the spirochetes are not in the blood, but in the tissues at the time of live blood microscopy, then someone with Lyme could go away thinking they didn't have it.
posted
I am not messing around with anyone, this is all new to me. I just found out today,
I am scared I have been sick for over two years, and I was the who ask for the test.
I grew up in N.J and watch a dear friends of mine father go through lyme therapy. I also watch my neighbor go through it also.
It is a lot to process all in one day. I came to this board so I could understand and learn and get support.
Not feel like a piece of ****. Thanks guys.
Have a wonderful day
Posts: 52 | From Ohio | Registered: Oct 2013
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
hurting, don't go away from here. The people who replied to your post are angry with the current state of affairs re: treatment of lyme and reading tests--not angry with you.
Welve all been frustrated with non-LLMD treatment.
They're here to help you, so don't take any of this personally.
Posts: 1297 | From USA | Registered: Dec 2002
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posted
gmb, so you are saying going to a infectious disease doctor for lymes I not worth it. He wont be able to tell me nothing.
My doctor said something about lupus also, and RA. Does this mean they are looking for other autoimmune.
I trust my doctor but I know this is out of his league, that is why I am here looking for help from people who have been through it...
Posts: 52 | From Ohio | Registered: Oct 2013
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posted
Your symptoms sound like Lyme symptoms. The ID doc will not help you. You need to see a Lyme-literate doctor.
When you get going with some treatment, you will start to feel better.
Treatment occurs in three categories: kill/deter the organisms, detox, and fortify the body. You and your doctor will discover what works best for you.
Your doctor will also do some bloodtesting to see your chemistry and how best to treat you.
As you know, we also have a lot of discussion here about everything. We can discuss medical questions you have in Medical Questions, and support in General Support.
I know it is a shock when you first find out - it certainly was for me, after searching for answers for 25 years!
You can use this time to start learning more about what's going on. A lot of info is at the top of Medical Questions. I suggest you read through the Burrascano 2008 guidelines there.
I call it going to Lyme school. The more you know, the more you'll follow what your doc is doing. However, if this is too much for you at this point, just let the LLMD help you through it in the beginning.
Posts: 13117 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
Public Health Alert (PHA) is a newspaper committed to researching and investigating Lyme Disease and other chronic illnesses
Laboratory Tests and Diagnosis for Lyme Disease and Co-infections - June 2013
- by Armin Schwarzbach, M.D., Ph.D. - Five Pages -
Posts: 48021 | From Tree House | Registered: Jul 2007
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
It has nothing to do with you. This is just happening over and over and over....It's just same story on repeat. And every time it's lyme. A 2.52 on a titer is a positive.
People put so much faith in their drs, who in turn make them worse or send them down the wrong path.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
We have all found out the hard way that infectious disease doctors don't know anything about lyme disease. They are the doctors who are SUPPOSED to treat it. But, everything they believe about lyme disease is FALSE.
I had a very horrible experience with one after I got my positive lyme test. She sent me for another lyme test! That's because she wanted to undiagnose me with lyme disease. She yelled at me the minute she walked in the door, "This is ridiculous! Nobody could POSSIBLY have all of the symptoms you have listed here."
So, that is how we get treated by the infectious disease doctors. Skip them totally.
So, click on the picture of an envelope above droid's post, and ask him for the names of the Ohio lyme doctors.
Then, you will be in the hands of an expert who really understand this complex disease.
You definitely have lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
lax mom, I think that if they are in the tissues that they will be in the blood too. Show me a reason to think it would not be so. Any tests done to prove this? Convetional docs would have no way to know, thats for sure. Alternative docs who use the dark field say if its in your blood you have it..they dont say if its not in your blood you dont have it. What they do say is that all their lyme cases have it in the blood and when its gone from the blood patients are a lot better. Still no one knows at what exact moment people are cured.. no test has been able to difinatively document cure... meanwhile people walk around with false negatives from the serum tests thinking they dont have the disease.
Posts: 803 | From USA | Registered: Oct 2013
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posted
Thanks everyone, So I take it, that 2.52 titer is very high and that's all I need for a positive on lyme.
I am just trying to understand this.
all I got was a phone call my test result over the phone and a referral to the infectious disease doctor
Posts: 52 | From Ohio | Registered: Oct 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Seeing and infectious disease doctor for Lyme is like seeing a podiatrist for a gynecological problem.
Don't waste you're time. They don't have the expertise to treat you. You need someone with training specific for Lyme disease.
Posts: 2839 | From California | Registered: Jul 2012
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posted
hurting.. please listen to the veterans here... especially "TF."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
hurtinginoio: we are all here to support you.
This disease will cause you to lose faith in most Drs. Sad to say.
I think you are getting a small taste of that right now. Instead of looking at your test for the positive that it is and starting treatment, they are sending you on a wild goose chase, throwing Rheumatic diseases in the mix, etc.
Which is ridiculous. Teens with acne go on DOxycycline for years at a time, but they are freaked out to give the same med to some one with actual Lyme disease.
You don't want to lose time. The 2 months that my ID Dr had me questioning my diagnosis, thinking maybe I had something inflammatory and not infectious, caused my infection to get into my nervous system.
By the time I finally got to a Lyme literate MD, I had difficulty forming a sentence my brain fog was so thick and I had meningitis that Dr Halperin stated was no biggie on the Katie show.
Once your family's lives have been destroyed by ID Drs delays, it's understandable that we would want people who are newly diagnosed to get the best treatment possible ASAP. That's when you have the best chance for a full recovery.
Carmen: Since Lyme is a clinical diagnosis, I don't think dark field microscope is needed. I'm all for alternative treatments.
If Lyme is in the tissues it may not be in the blood in that particular blood draw. That is well known. That's the reason Advanced labs offers blood draws from different areas: ex. arm and finger.
According to ILADS: "Proving a persistent infection requires that you locate something in the blood. Since spirochetes leave the blood for body tissue, and tissue samples are something best collected at an autopsy, finding evidence can be tough."
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
No. That 2.52 is not all you need. But yes, it's a no doubter positive. And false positives do not exist. But your dr. will probably tell you that it is.
This is where you find out what a nightmare this disease can be and why most people just say "screw it, diagnose me with MS"...
Lyme will destroy your faith in people, except those that believe your symptoms are real, your dr., and fellow lyme patients.
You see politics and money killing people, like they do in a 3rd world country. But it's in the U.S. it's crazy.
You took a screener test to see if you qualify to take another test that you are most likely to test negatively on because the CDC conveniently set the criteria for a positive almost impossible to achieve.
The testing should be reversed. You already have shown that you've been exposed to lyme no question. You also have symptoms.
So You're best bet is to learn, read, and research all you can so you can self treat. This is a great start, you can get better...it just might take hard work and dedication.
Oh and along with researching, find a lyme literate dr. The infectious disease dr will allow you to get much worse if not make you worse with steroidal drugs.
The fact is ID drs are the worst when it comes to lyme.
posted
Do NOT do Steroids, it makes LD spread like wildfire!
Posts: 532 | From Texas | Registered: Oct 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Your response to the steroid injections is typical of a lyme patient. It is another proof that you have lyme disease.
The steroids suppress your immune system. With a weakened immune system to keep it in check, the lyme spreads faster than normally. That results in a quick downhill turn in your health.
Here are some quotes from the Burrascano Lyme Treatment Guidelines for you:
"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." (page 4)
"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." (page 12)
Steroid use can make it very difficult to get rid of lyme. You are going to need a very good doctor to treat you for lyme due to this aspect of your medical history. And, be sure you do not allow any doctor to give you any immune suppressants anymore.
Notice that the quote on page 4 mentions intraarticular injections. These are injections in a joint. That is what you had the last time.
So, this is saying that even a steroid injection in a joint is a no-no for someone with lyme.
Posts: 9931 | From Maryland | Registered: Dec 2007
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Steroids are the worst thing you can do. Never let them do that to you again. It sets you back so effects last up to 6 months.
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. What can help? Links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Well that explain why I went down hill after I had my facet injection.
In September of 2012 had it buy Nov I was not my self I was in more pain then ever.
My feet were hurting, I couldn't think straight, I was not able to sleep, my vision was changing, my legs were going numb and I was waking up paralyzed in the middle of the night. Other things were happen to
Push my self through the holidays and by Jan 2013 doctor took me out of work and I have not been back
Posts: 52 | From Ohio | Registered: Oct 2013
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posted
Just so everyone knows I just found out Thursday that I have lymes.
My PM Doctor did not know I had it when he gave me the injection, although I don't know if he would have known not to.
But I will be discussion things with him, Is there any other medicine you should not take. I am on Pain meds and seizure med for migraines. anti-inflammatory for OA. Muscles relaxers..
Dam now I am really starting to worry what else is making me sick,
I tried to go off of pain med to see if I was having side effects from it
I did for a week but the pain was so bad that I went back on it,
and my heart doctor said chronic pain could be effecting my heart as well. Learn something new everyday..
Posts: 52 | From Ohio | Registered: Oct 2013
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I think having chronic infection would affect your heart.
I'm so sorry you have found yourself in the Twilight zone of Lyme.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The only medicines lyme patients should not take are immune suppressants.
Also know that any surgery gives lyme the opportunity to grow like mad because surgery stresses the immune system. Same thing with being in a car accident or having stress of any other kind.
You must not drink alcohol or smoke. These weaken the immune system.
You don't want to do anything to weaken the immune system. You want to do everything to strengthen the immune system.
Lyme can affect the heart. It is called lyme carditis. Here is a link that talks about this:
As you will see, certain heart problems caused by lyme disease can completely disappear with lyme treatment.
I strongly suggest that you read through the Burrascano Lyme Treatment Guidelines to learn from a doctor all about this disease. Closely look at the symptom list on pages 9-10. This shows you all of the problems that lyme can cause.
Starting on page 28 is a list of supplements lyme patients need. Why not begin taking as many of these as you can, especially the ones that help the heart. For example, CoQ-10.
Many people have improvement from the supplements alone, because lyme depletes the body of many of these things that are necessary for health.
Lyme is a complex illness. It may be the underlying cause of many of your health problems including your inflammation (for sure), migraines, heart problems, etc.
So, getting lyme treatment could be the key for you. I hope you can get an appointment with a good lyme doctor quickly.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I am suppose to do a sleep study on Friday,
I need to know if anyone think this is necessary to still do.
Part of me says go and see what they say the other part say what can they do.
Posts: 52 | From Ohio | Registered: Oct 2013
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I had a sleep study last year and found out that I have mild sleep apnea. I'm now on a CPAP machine and it's helping me alot. When I don't use it, I feel much, much worse during the day.
So, I would recommend having a sleep study.
Out of 3 people I know in my extended family who have had a sleep study, all 3 have been helped.
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