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Old 08-13-2006, 11:03 AM   #1
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Unhappy Diagnosed with PARVOVIRUS B19, believe it to be Lyme.... where do I go what do I do?

I had a blood test for Lyme last month, which (typically) came back negative. My question is what exactly should I ask for, to be tested, as I feel that I do in fact have it. I have had severe and moving joint pain, brain fog is awful, latest is dizziness which is at an extreme, when I lie down I veel like there are tremmors going on... almost like there is a big a cell phone set to vibrate and I am Lieing on it. Fatigue is typically large and yet I cant seem to really sleep.... anyway. My dr said I have Parvovirus B19... my blood test results said I was having an acute reaction. Thats fine and dandy but parvo according to just about every site I have seen doesn't cause what I have been going thru for the last 6 weeks. What do I tell him I want where do I go from here?????
I need help as the fog makes me unable to function well and I feel that I cant advocate for myself.

 
Old 08-13-2006, 12:30 PM   #2
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Re: Diagnosed with PARVOVIRUS B19, believe it to be Lyme.... where do I go what do I do?

Hi eenermt, welcome to the board!

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.

Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

If you would like a doctor recommendation, post where you are located.

 
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Old 08-13-2006, 03:18 PM   #3
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Re: Diagnosed with PARVOVIRUS B19, believe it to be Lyme.... where do I go what do I do?

.... of course I am in Ct.... midstate, not that that matters. Thanks for answering so quickly. I have been going back and forth with this for 6 weeks and feel like I am crazy... dont we all.... would love any suggestions I can get.
PS I have many of the symp on the list and will print that out.... thankx
Renee'

 
Old 08-13-2006, 04:14 PM   #4
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Re: Diagnosed with PARVOVIRUS B19, believe it to be Lyme.... where do I go what do I do?

Renee'
I would like to welcome you too.

I know a LLMD is the best one to get to the bottom of this. Won't say more, because I have a bad case of brain fog. Erased alot of what I typed because it didn't make sense to even me.

Prayers....Marsha

 
Old 08-13-2006, 09:33 PM   #5
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Re: Diagnosed with PARVOVIRUS B19, believe it to be Lyme.... where do I go what do I do?

hi eenermt, welcome to this board, i am familair with parvovirus b 19, my friend had it and he was very sick, symtoms were similar as lyme, thats why i thought he had lyme, he even tested positive in one lyme test, but doctors made him tons of testing and he had parvo virus, he got a vaccine from germany. did your doctors did any test to diagnose it? or he is just asumming? if you tested positive for parvovirus, is most likely you have and is not lyme, so is very important to make sure he did the tests to diagnose it, good luck and keep us posted

 
Old 08-14-2006, 08:18 AM   #6
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Re: Diagnosed with PARVOVIRUS B19, believe it to be Lyme.... where do I go what do I do?

I tested positive for Parvo. Dr said results showed acute. But siad not normal for rx to be this strong. looking for answers. would your friend be open to talking w me? this is really bad...

 
Old 08-14-2006, 12:29 PM   #7
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Re: Diagnosed with PARVOVIRUS B19, believe it to be Lyme.... where do I go what do I do?

Hi Renee. Dr. Stephen Phillips in Wilton, CT comes very highly recommended. I hope you can see a Lyme doctor soon and get some answers. Keep us posted on your progress okay?

Last edited by ticker; 08-14-2006 at 12:36 PM.

 
Old 08-15-2006, 07:06 PM   #8
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Re: Diagnosed with PARVOVIRUS B19, believe it to be Lyme.... where do I go what do I do?

Thank you.... will let you know

 
Old 08-18-2006, 12:29 PM   #9
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Re: Diagnosed with PARVOVIRUS B19, believe it to be Lyme.... where do I go what do I do?

hi eemermt, unfortunetely, my friend is very very sick, but not because of parvo virus,he has lymphoma stage 4, he is at mayo clini,i might be able to answers some of your questions, he had that last year, started with hug fevers, he was put on uc for a month and a half, i dont know how bad is your case, i assume since you are able to write emails,yours is not a strong as him, i remember he was very very sick, 3 mohts at the hospital, he has almost not red cells in blood... then he became all swollen, he couldt walk, of use his hands...and i remember him telling me his family had to fly to germany to buy the vaccinne, that only 2 laboratories in germany had it...then he became better, and go sick again, and was diagnose ehre in peru with vasculits, he had all kinsdof tests, biopsies, bone marrow, like 3 and everything was normal except for the red cells... so he was having high doses of corticoides, the he got very sick again... back to ic, then 3 months ago to mayo clinic, the did all test to him, couldnt find anything wrong, the day he was flying back to peru, he got really sick again, doctors removed the corticoids, did a bone marrow and a lymph node biopsy and was lymphoma stage 4, so his case is different, i believe he got the parvovirus because his inmune sistem was very weak because he had lymphoma and nobody knew, and doctors at mayo said all biopsies were negative because the corticoides were hidding the the cancer...i how bad are you?? i hope this story helps you to clear what you have...do you have high temeratures? do you sweat at night??parvovirus symtoms are very simmmilar to lyme, my friend even tested positive for one of the 3 tests he had for lyme.. but he doesnt have it...let me know
hugs

 
Old 08-19-2006, 07:48 AM   #10
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Re: Diagnosed with PARVOVIRUS B19, believe it to be Lyme.... where do I go what do I do?

Oh Brid! My heart aches for your friend. Whata tragedy. I will mention him in my prayers, and hope that they help. To live a life this way seems an awful waste... hope he knows how much you care.
I am doing better today. I was better yesterday, these are encouraging things. I am trying to take it day by day and to not get too excited if I am awake for more hours than I was previously. My RBC is very low and I am seeing a naturopath who has me on a miriad of pills to try and bring my levels up. My dr wanted me to have a blood transfusion to get the numbers up. I said I need a week to try and build, but if I feel worse I will go. He begrudgingly said ok. (they dont screen for Parvo or lyme in transfusions and I dont want to chance getting more" bugs") The pains change daily but I am learning to not take them as seriously as I would have earlier, because I know tommorrow it will be different. Doing what I can when I can, you never know how things will change...
and waiting to get in w a Lyme dr, because I am not convinced that my "acute" parvo isnt Lyme disease....
Best wishes to your friend, hope he isnt in pain....
Ren

 
Old 08-19-2006, 09:56 AM   #11
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Re: Diagnosed with PARVOVIRUS B19, believe it to be Lyme.... where do I go what do I do?

Hi Ren. Make sure you get tested for the co-infections. Babesiosis infects the red blood cells. Some people who have it have a low count, some people don't.

 
Old 08-19-2006, 07:28 PM   #12
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Re: Diagnosed with PARVOVIRUS B19, believe it to be Lyme.... where do I go what do I do?

hi ren!! glad you are feeling better today... parvo virus make your red cells go low...that virus in not uncommun, but is good to check why you have your inmune system low, do you have kids? beause usually kids get that, maybe you have been in contact with a kid who had it... maybe the virus was in the air on a close place you were...just in case, since your red count in low, i suggest you do a bone marrow biopsy... i had it... and believe me, it didit hurt at all, i was sooo scare for 2 weeks, when i had it, i felt nothing! i even ask the doctor when was he going to start and he said he was done!!!! that test is very good to check your blood count and to see wether the cause from getting parvovirus is from another disease...good luck!!! and keep me posted!thank you very much for the prayers for my friend....and very important, if you decide to do the bone marrow, dont let any doctor give you corticoides... because corticoides are inmune deprresants and will hide the real results from any test you might have..

Last edited by brid; 08-19-2006 at 07:29 PM.

 
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