Babesia: Dr. said joint pains is not a symptom????

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Nexis
New Member


Date Joined Mar 2009
Total Posts : 15
   Posted 4/1/2009 10:56 PM (GMT -7)   
This was a very disturbing conversation I just had with a doctor.

Since there is no known human strain regarding babesia in this country, only found mainly dogs, that I called a university hospital that I read on a medical journal report that examine someone who was first diagnosed with Babesia contraction by blood transfusion.


So I speak to the doctor, remember I am living abroad non-western country. This doctor tells me has experience with Babesia and Lyme while they were in the USA East Coast City.


So I was speaking to him over the telephone and not a physical appointment so he asks me what my symptoms are.

I told him I had joint pains, fatigue, fever, etc.

Then he goes "Oh Babesia is highly unlikely with your symptoms".


And I ask him what symptoms makes me unlikely for Babesia, and he goes "the joint pains, people with active babesia do not have joint pains".

Yet I told him my titer for the IgM/IgG portion says active infection state, he then goes" Oh that's not a reliable indicator". I then ask, Then why would my titer be that high with these symptoms? The doctor goes" Oh you were probably were infected a long time ago and its just still comes up in your anti-body test".


OK so I ask him what will prove to be positive for the active infection and he goes "a microscope test". I then go, I read that the microscope testing is only reliable within a 2 week period of initial infection. Yet the doctor kept repeating "joint pain is not a symptom of Babesia so you probably have something else..."






I am sorry yet I am reading on every weblink to babesiosis and it says "pain/ joint pain"!!!!



Is this doctor a quack or just a naive infectious disease doctor, yet where is he getting his information? and claim he has diagnosed Babesia patients?

He's at a famous university hospital yet oh well what can I say he doesn't know anything!


~~~~~~


I just did a few web search research on this doctor's name to see if anything shows up. This is the most "wrong" conversation I had, saying the Babesia has no symptom of joint pain!


Guess what I find his name being SELECTED and HONORED BY the IDSA , that infamous IDSA on here:

If you find your doctors name on that list too, be very careful.

http://www.idsociety.org/Content.aspx?id=11848

Post Edited (Nexis) : 4/2/2009 12:13:27 AM (GMT-6)


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 4/2/2009 8:01 AM (GMT -7)   

Hi Nexis.  Remind me where you are located (is it Japan)?  You have a positive test and you have symptoms.  You need to be treated.

Below are some symptoms of Babesiosis: 

Chills
Fatigue and often excessive sleepiness
High fever at onset of illness
Night sweats that are often drenching and profuse
Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)
Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"
Depression
Episodes of breathlessness, "air hunger", and/or cough
Decreased appetite and/or nausea
Spleen and/or liver enlargement
Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)
Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
Joint pain (more common with Lyme and Bartonella)
Anxiety/panic (more common with Bartonella)
Lymph gland swelling (more common with Bartonella and Lyme)
 
Realize that several symptoms of Lyme and co-infections can overlap.  You very well may also have Lyme disease.  Were you tested for the other co-infections Bartonella, Mycoplasma, and both types of Ehrlichiosis (HME & HGE)?
 
Do you know of a doctor who speaks English and who may be willing to consult with a US Lyme doctor?  I don't know if a doctor here would be willing, but it is worth a try.  Will you be returning to the US anytime soon?
 


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 4/2/2009 8:31 AM (GMT -7)   
Nexis, Get another doctor- he sounds like he doesn't know what he is dealing with. I have never met an infectious disease doc that actually knew much about lyme and co-infection treatment. I had your symptoms and had babesia -tested positive.....which had to be treated for almost 2 years with mepron and zithromax. It was extremely difficult to treat for me and I hope it is gone for good. After 3 months of treatment I still had symptoms but tested negative from then on..even though symptoms were still with me. The longer you wait the worse it gets.Blessings
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline 9/08
modified cowden protocol 3/09
Outstare The Darkness--The Light Will Come!


pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 4/2/2009 9:00 AM (GMT -7)   
I agree- don't listen to him. I called head of infectious disease at our local hospital and had a similar conversation- he only believes in Babesia if you are febrile with a positive smear, despite my symptoms and a positive RNA for Babesia. These people need reeducation.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 4/2/2009 12:47 PM (GMT -7)   
Nexis,

Hey there! I'm so sorry your doctor is not being cooperative. I know you have been through so much with all of this. In my opinion, you have the symptoms of Lyme Disease as well as babesia. Maybe go to the doctors office and and tell him how you feel. Tell him how you cannot function and ask
him if he can just try you on some antibiotics to see what happens. We have to push sometimes to get what we want. I've had to do it so many times. I had a doctor here pretty much laugh me out of his office when I asked him to be tested for Lyme. He told me there was no such thing here. I had to fight to get a referral to my LLMD now because he didn't want to refer me at first. This whole disease is a fight. It's sad to say that but that's just how it is for us right now. Maybe if he hears what you are going through, face to face, he might listen. The only other thing I can think of is trying to come to the states. I don't know how that is on you financially but it's worth a shot.

If you ever need to talk, you can email me anytime. I hope this doctor does something to help you and soon!!
Have a blessed day!


Nexis
New Member


Date Joined Mar 2009
Total Posts : 15
   Posted 4/2/2009 5:28 PM (GMT -7)   
Thank you everyone for all of your support! I cannot believe that i am just hitting dead ends after dead ends with this Lyme/co-infections educations of doctors!


I am going to consult a medical clinic here that deals with Western clients mainly USA, Canada, UK residents and the doctors are Western so maybe the can think outside the box, and see that I tested positive for the FISH and Antibody for the Babesia Duncani, yet for some reason my PCR is negative.

I did the complete co-infections and the PCR for each co-infection, the only thing that showed up was the Babesia Duncani with the FISH testing.

I am going to resend my blood, I am not taking any medications so I know its not an medication reaction that is making my tests negative.

I just want to thank everyone here for being extremely supportive, I feel the need to get the medical community and the governing treatment to change their ways as an activist once I get better.


I can imagine how many people there are like me and not complain; I am just going to take things day by day, I am better today so I will start another new search for doctors.


I can seek treatment on the West Coast USA, Or vancouver Canada. Somewhere I can drive around maybe outskirts of SF or LA, since I cannot walk around, with the chronic fatigue. I don't know what I can do if I need to get treated long term may be see the doctor every 6 months for follow-ups on the States and get a doctor to give me the meds here?

Post Edited (Nexis) : 4/2/2009 6:31:20 PM (GMT-6)


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 4/3/2009 4:36 AM (GMT -7)   

Hi Nexis.  I have treated Babesiosis more than once, and I have never had a positive PCR.

Did you have the Western Blot done at IgeneX?  Many people who have Lyme do not test CDC positive which requires several bands to be present for it to be positive.  Did you have any bands present on your test?  Lyme doctors often look at which bands show, some are specific for Lyme.

There are some Lyme doctors in CA.  Some doctors will spread out appointments and do phone appointments in-between for patients who have to travel.  You can email me at ko_@bellsouth.net  for their names.  We do not post doctor names on the board.

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