posted
For the past three weeks I haven't felt like myself. I started to get random headaches, chills and my joints have started I crack/pop all the time. I also seem to have flare ups of tendinitis in my wrists and feet. I also feel like I have extra fluid in my right knee and wrists. However, I did go to my PCP and got blood work done. Results came back positive for EBV Mono and negative for Lymes. I'm still think I might have lymes despite the negative results bc I cannot think of a time where I shared food/drinks with someone and I know I haven't kissed anyone recently. Has anyone with lymes experienced these symptoms?
With that being said, I wanted to get a second opinion and hopefully truly find out what is going on. Anyone know of a LLMD in NJ. I live in South Jersey and border Philly so I would be willing to travel to PA as well.
Any information you can give me would be appreciated. I just want to feel like myself again. It's been way to long that I haven't felt right.
Posts: 4 | From New Jersey | Registered: Oct 2016
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do that, click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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quote:Originally posted by ckliment: For the past three weeks I haven't felt like myself. I started to get random headaches, chills and my joints have started I crack/pop all the time.
I also seem to have flare ups of tendinitis in my wrists and feet. I also feel like I have extra fluid in my right knee and wrists.
However, I did go to my PCP and got blood work done. Results came back positive for EBV Mono and negative for Lyme.
I'm still think I might have Lyme despite the negative results bc I cannot think of a time where I shared food/drinks with someone and I know I haven't kissed anyone recently.
Has anyone with lymes experienced these symptoms?
With that being said, I wanted to get a second opinion and hopefully truly find out what is going on. Anyone know of a LLMD in NJ. I live in South Jersey and border Philly so I would be willing to travel to PA as well.
Any information you can give me would be appreciated. I just want to feel like myself again. It's been way to long that I haven't felt right.
[ 10-28-2016, 02:37 PM: Message edited by: ckliment ]
Posts: 4 | From New Jersey | Registered: Oct 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
PCPs often do not do a good lyme test. Get a copy of it and tell us if it was a Western Blot (best test) or an ELISA (useless test).
Also, if it was done by Quest or LabCorp, they are not very good labs. A lyme specialist will use a blood lab that specializes in tick borne diseases.
So, with your symptoms, you are wise to pursue this with a lyme specialist. I know the lyme docs in NJ and I don't recommend any of them. The doc I recommend is in Maryland, near Washington, D.C. You would be in good hands with him. Let me know if you want his name.
If you have never read the Burrascano Lyme Treatment guidelines, it would be a good idea for you to do so. They are here:
See page 7 where he says that NONE of the lyme tests are reliable, so the doctor has to diagnose you based on your medical history, symptoms, test results, and response to a trial course of antibiotics.
I believe the doctor I recommend would do this for you. He will test you not only for lyme but for its various coinfections using a good lab and he will look at your blood under his microscope.
So, because of how he diagnoses and treats, it would be well worth your while to make a trip here. He has virtually no wait to get an appointment right now.
If you chose him as your doctor, you would only have to appear in person once every 3 months. He will do telephone or Skype appointments the other months.
What I learned in my over 13 years in the lyme world is that many doctors treat lyme, but only a very few know enough to actually cure a person of it. This doc has cured a few people that I know of.
His practice is strictly lyme disease. He had lyme himself. He follows the Burrascano lyme treatment protocol, meaning combinations of high-dose antibiotics. You would NOT be on just one antibiotic but many.
So, get a copy of your lyme test results and post your results here. We will tell you if there is any indication of lyme in your results.
Doctors who do not specialize in lyme often tell patients that their test results were negative, but a lyme specialist looking at the same results would say there is evidence of lyme.
So, for all these reasons, you are wise to pursue this with the best lyme doctor you can possibly afford.
I went undiagnosed for at least 10 years, but still I got cured when I finally went to a true lyme specialist who followed Burrascano. I have been symptom free for over 11 years now. I have the same life I had before lyme disease! Praise God! But, the doc is the key. Can't emphasize that enough. The doc is the key to getting rid of this horrendous disease.
There is an awful lot of lyme in NJ. Keep pursuing this until you get to the bottom of it.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Page 5 of Burrascano:
"Chronic viral infections may be active in the chronic patient, due to their weakened immune response. PCR testing, and not serologies, should be used for diagnosis. Commonly seen viruses include HHV-6, CMV, and EBV."
This quote says that for a lyme patient, to see if they actually currently have EBV, do a PCR test rather than a blood serum test.
It is common for a lyme patient to have various viruses including EBV. See p. 27.
See pages 9-10 for a pretty good list of lyme symptoms. Make a very complete list of your symptoms and take that to your first lyme specialist appointment. This is a very important part of making the diagnosis.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
It looks like I had the immunoblot- Lyme disease antibodies (IGG, IGM) done by quest diagnosis. I was negative/nonreactive to both the Lymes Disease AB (IGG), Blot and Lymes Disease AB (IGM), Blot.
But with the EBV Virus I was high in EBV viral capsid AG (VCA) AB (IGM). And the interpretation of the blood work was that I have a current Epstein-Barr virus infection.
My MCH was slightly elevated (33.6), my absolute Monoxutss were slightly low (177), my T3 was low (70) and white blood cell count was low (3.4).
Everything else came back normal. Urine analysis, iron, lipids, CMP, Vitamin D.
Yes I would like the information to that doctor if you don't mind emailing it to me. [email protected]Posts: 4 | From New Jersey | Registered: Oct 2016
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Lyme Disease AB IGG, BLOT Negative 18 KD IGG Band Non-Reactive 23 KD IGG Band Non-Reactive 28 KD IGG Band Non-Reactive 30 KD IGG Band Non-Reactive 39 KD IGG Band Non-Reactive 41 KD IGG Band Non-Reactive 45 KD IGG Band Non-Reactive 58 KD IGG Band Non-Reactive 66 KD IGG Band Non-Reactive 93 KD IGG Band Non-Reactive
Lyme Disease AB IGM, BLOT Negative 23 KD IGM Band Non-Reactive 39 KD IGM Band Non-Reactive 41 KD IGM Band Non-Reactive
EBV Viral Capsid AG VCA AB IGM 1.22 H EBV Viral Capsid AG VCA AB IGG Negative EBV Nuclear AG EBNA AB IGG Negative
Interpretation: Suggestive of a current Epstein-Barr Virus Infection
Posts: 4 | From New Jersey | Registered: Oct 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
AB stands for antibodies. So, you were HIGH in EBV antibodies. This can be from a prior EBV infection. That is why Burrascano says that you need a PCR to find out if you have a current EBV infection.
The interpretation of your test results is: SUGGESTIVE of a current EBV. Burrascano is telling you how to find out if it is current or not.
"In addition, many latent infections which may have pre-dated the tick bite, for example herpes viruses, can reactivate, thus adding to the illness." (p. 4 of Burrascano)
I still test positive for lyme on the Western Blot antibody test, even though I have not been sick for over 11 years and over 8 years since my last tick bite and treatment. Antibodies to these illnesses, including EBV, can hang around in the blood for a long, long time.
I will send you the name of the doc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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