posted
OK so I got back my results & the DR.'s say I haven't had Lyme long
(I beleive it has been about 5-12 years since 12 years ago is the only time I ever remember seeing a tick on my let alone a bulls eye)
On the Western blot IGG
41 KD (IGG) band reactive
IGM Positive
23 KD (IGM) Band reactive
41 KD (IGM) Band reactive
I have lots of symptoms my left side including my face goes numb tingly, all my joints ack, night sweats, kidney stones so bad I have had 2 surgeries, decreaced kidney function from stones, mygrains...... ect., ect., ect.,
My question do you think I have ad i this for awhile or is this just another med prob?
The DR. put me on 3 weeks of doxy is this enough 100mg.
I have been on it for about 1 1/2 weeks and it has been hell one day I can't walk the next day I can't pick anything up with my left hand.
So what does everyone think do I need to find another Dr.?
By the way the past 2 days I have had uncontrollable shaking is this part of getting better has anyone heard of this?
Posts: 9 | From lansdale pa | Registered: Aug 2009
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posted
I have lots of pain too, and shaky hands, internal trembling, severe fatigue, you name it.
But Im on 400mg of Doxy! tomorrow is my last day after 6 weeks!
Im hearing the min of Doxy is 200mg and thats as prophylaxis. 400 is to treat.
I dont know what those readings are though.
I havent seen mine yet but will Monday and Ill need help too!
Posts: 50 | From nj | Registered: Aug 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Your doc doesn't know much about lyme disease, that's why he says you haven't had it very long. He thinks that the Positive IgM indicates that you got the disease recently. Wrong!
Although that thought process might be OK for other diseases, it doesn't hold true for lyme disease. I go with you on the theory that you got it years ago.
Here is what Dr. C says about the positive IgM:
"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."
You can read all about your test results and what they mean in the post near the top of Medical Questions called "Dr. C's Western Blot Explanation." That's where this quote comes from.
As Dr. C says, even the bands that were "equivocal" or "indefinite" count as weak positives. So find out if you had any of them in addition to the positive bands you posted.
Any way you look at it, you have lyme disease.
3 weeks of doxy is not nearly enough, neither is 100 mg twice per day which is what most docs put you on. That is the reason sites like this exist. People are not cured this way, and they continue to suffer with lyme disease.
At this site, we can point you to a doc who knows lots and lots about lyme and how to clear it from your body. It generally takes at least one year of antibiotics for a person like you who has had lyme for some time. You will get progressively better over the year until you are finally finished. Some people take longer to cure of course, and some can't get there.
To find a doc, check out "Support Groups" in your state (left side of every LYmeNet page) and call those near you for names of good docs, put a post in "Seeking a Doctor" telling the states you are willing to travel to, andstudy, study, study about lyme disease so that you will be able to evaluate your lyme doc's treatment of you.
The doc is the key to getting rid of this disease, my friend. I can't emphasize this enough. The doc is the key.
I had undiagnosed lyme disease for about 10 years. I completed my lyme treatment over 4 years ago, and I am still symptom-free, enjoying my life--the same life I had before lyme disease.
But, that took me working my way up the "food chain" of doctors until I got to a top notch doc. It was my 3rd lyme doc that got me well. He follows the Burrascano lyme treatment protocol which is high-dose combinations of antibiotics--way different from what you are taking.
Burrascano is the lyme disease guru in the U.S. and also the world. His lyme disease treatment guidelines are found here:
Study them to learn what good lyme disease treatment looks like. If your doc's treatment doesn't look like what Burrascano recommends, I suggest you find another doc.
My family doc gave me the standard doxy treatment for 30 days. It helped me, but my symptoms came right back as soon as I finished the meds. No other doctor would treat me anymore.
That is because the Infectious Disease Society of American (IDSA) has educated all of our doctors into believing that lyme is easily treated with the low dose doxy for no more than 30 days. Unfortunately, that is just not true, as all of us on this board can attest.
So, I was forced to find lyme doctors through lyme Support Groups to continue treating me.
I thank God every day that I found a good doc eventually and got rid of my diseases. I had lyme, babesiosis, and bartonella. They aren't killed with 30 days of doxy. It takes much, much more.
The night sweats are a classic sign of babesiosis. Read all about it in Burrascano. The tick gives us more than just lyme disease. These other diseases that tag along with lyme are called "co-infections." Babesiosis is one of them and is commonly (over 66% of the time) found in lyme patients.
So, get yourself a good lyme doc and get well.
If you are willing to travel to the Baltimore area, send me a private message and I will give you some names of docs.
You will get lots of help on this site. Keep posting and asking questions.
Posts: 9931 | From Maryland | Registered: Dec 2007
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How long have you had the symptoms? That might give you an indication of how long you've been infected.
(I don't know if kidney stones has anything to do with lyme. Maybe someone else here can speculate. But don't forget it is possible to have lyme as well as any other ailment).
Most of us never saw the tick or a rash, so you could have been bitten multiple times and never known it.
If you're showing neurological symptoms, 3 weeks of doxy is essentially nothing. Expect to be on long term to have any chance of getting rid of the lyme.
Good luck,
James
Posts: 872 | From New York City | Registered: Jun 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I agree with TF also.
Find a good LLMD who will treat you according to ILADS guidelines.
-------------------- 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
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posted
Nine Reasons for False Negative Lyme Disease Blood Test Results
From the Lyme Disease Foundation brochure, Frequently Asked Questions About Lyme Disease
1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.
2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.
3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person's immune system, thus reducing or preventing an antibody response.
4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.
For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.
5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.
6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.
7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).
Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.
8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.
9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive.
Posts: 366 | From MA | Registered: Apr 2006
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posted
Thank You all so much for all the help!!! It is so nice to know I'm not crazy like the Dr's would have me believe Thank to all of you I have an apointment w/ a llmd hopefully He is a good one and I can start to recover. If I can help in any way let me know I'll keep everyone updated.
Sarah
Posts: 9 | From lansdale pa | Registered: Aug 2009
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posted
Thank You all so much for all the help!!! It is so nice to know I'm not crazy like the Dr's would have me believe Thank to all of you I have an apointment w/ a llmd hopefully He is a good one and I can start to recover. If I can help in any way let me know I'll keep everyone updated.
Sarah
Posts: 9 | From lansdale pa | Registered: Aug 2009
| IP: Logged |
posted
Thank You all so much for all the help!!! It is so nice to know I'm not crazy like the Dr's would have me believe Thank to all of you I have an apointment w/ a llmd hopefully He is a good one and I can start to recover. If I can help in any way let me know I'll keep everyone updated.
Sarah
Posts: 9 | From lansdale pa | Registered: Aug 2009
| IP: Logged |
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