Opinions on Bartonella testing please

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jojeanle
Regular Member


Date Joined Dec 2006
Total Posts : 79
   Posted 5/28/2009 8:08 AM (GMT -6)   
Hi,
 
I believe I have bart based on stretch marks, spiderveins, sore soles, burning sensations.  I have been tested through Quest which says neg, and also had a bart pcr from MDL in NJ, that also was neg....  the Doc that did the pcr  says that Bart is in the blood, and if I had it would show up on pcr....  Now they only tested for b.hensale, and isnt there a bunch of strains of it??? 
 
I mean, I have stretch marks in very weird places, like my shoulder, back of my knee, and a couple across my back.  Since becomming ill is when they all have started to develop.  I have fatty lumps under my skin, and a bunch of other bart type symptoms.    I mean this is really crazy, how can you be so sick and all the darn tests keep comming up neg....   
 
Has anyone tested neg for bart but been clinically diagnosed????  I havent done an ingenix test, I think thats my next step...  Can anyone share their experiences with me?  Thank you 

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/28/2009 8:17 AM (GMT -6)   
jojeanle,

Are spider veins a symtom of Bart?? I have had them most of my life, but they have become SO bad the past couple years, ESP this year, that I cannot even wear capris anymore (my ankles are completely purple). They are at least 10 times worse than they were and I have taken to long skirts.

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 5/28/2009 1:47 PM (GMT -6)   
Assume you have Bart. I believe ALL Lyme patients should be treated for Bart... Why? Ecause the lab tests are unreliable and recent east coast tick surveys showed more Bart in the to k population than Lyme!!!

It is impossible. Yes impossible to recover from Lymw until Bart is treated. I believe it is why many linger with chronic Lyme.

I am only 6 days into IV Claforan and I feel well... No brain fog!!! Rarely a night sweat... Even my shoulder and teeth are doing better.

Demand Bart treatment

jojeanle
Regular Member


Date Joined Dec 2006
Total Posts : 79
   Posted 5/28/2009 2:32 PM (GMT -6)   

Yes,

 

Spider veins and stretch marks can be a symptom of bartonella, especially if they are in weird places.  Just google bartonella stretch marks, and articles come up on it.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 5/29/2009 12:50 AM (GMT -6)   
I have a negative Bartonella test from Fry and yet have been clinically diagnosed with Bartonella. The tests are far from perfect for all of these tick borne diseases...
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/29/2009 12:57 AM (GMT -6)   
ALL of this started because we learned there is late stage and chronic Lyme disease, and in that respect, Lyme is unique. But, from learning about 'co-infections' like Bart and Rocky Mt, etc, it sounds true for all the other TBIs.

For example, to those of you who list Rocky Mt Spotted fever in your signature, what does this mean? Does it mean that you have a lingering, long term infection, OR does it mean that you were at some time infected, but resolved and/or are not in a chronic/late stage?

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 5/29/2009 1:02 AM (GMT -6)   
From what I understand, it is possible for there to be a lingering low-level infection of any of the Lyme coinfections. I think this is what makes it so hard to diagnose and so hard to test for - there aren't the obvious, in your face symptoms or blood test results that any MD who isn't blind would recognize. One thing that may contribute to these low level lingering infections is chronic Lyme, because of how it beats down the immune system so much.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 5/29/2009 7:08 PM (GMT -6)   
I also came up negative for bart but have been treated for it since October Rifampin and mino. I have had many signs of it since the very beginning-painful soles, veins, stretch marks. I believe most Lyme people have BLO Bartonella like organisms that are very difficult to treat. I have stopped Rifampin for now so I can again treat Babs. 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!


mmadsengreabe
New Member


Date Joined May 2009
Total Posts : 2
   Posted 5/30/2009 3:41 PM (GMT -6)   
My daughter was diagnosed with Lyme last summer when she was seven and was hospitalized and took antibiotics for three weeks in addition to the IV she had in the hospital. Since then she has been sick so regularly: fevers with headache and muscle aches mostly. I would say on average every three weeks she misses between 1 and three days of school because of this. My local dr. doesn't seem to get it. I took her see a pediatric infectious disease specialist at Dartmouth Hitchcock in Lebanon NH last month and he said her symptoms had the "flavor" of a post-lyme syndrome but didn't recommend any treatment. I am also concerned she may have a co-infection.
Does anyone have a dr. who understands all of this and will help us get to the bottom of this? We are in NH so Boston would be fine. Thank you.

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 5/30/2009 3:49 PM (GMT -6)   
I am in Massachusetts, email me and I will give you a doctor for your child, contact@phulicohanmd.com

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 5/30/2009 3:53 PM (GMT -6)   
Jojeanie, I had no positive Bart tests and a negative EGF (Endothelial Growth Factor) test.......I did not have classic Bart signs like you (you most certainly have Bart).....I had nerve hypersensitivities and terrible mood swings and sweats-- my sweats got worse with Rifampicin then I improved but never fully- after 6 weeks I am now on IV Claforan (IV therapy for Barrt) and feel fabulous-- I am hoping this will at last improve my CD57. I know I still have Lyme to treat but it is great to feel happy, Bart can be such a downer, good luck.

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 6/1/2009 4:23 PM (GMT -6)   
PcPc, Wow my sweats were so much worse while on 7 months of Rifampin. I knew it was from that I would get them at least once an hour throughout the day and night. My LLMD Dr. H. thought the sweats were a herx, but I knew otherwise.

Thanks for the confirmation on this. What symptoms have left you since on the IV for Bart?
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!


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/1/2009 4:36 PM (GMT -6)   
PCPC, please -- I would like to know the answer to Mineral's question: what symptoms of bart have apparantly resolved?  I am concerned about someone I love, also.

Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  What was this??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 6/1/2009 5:25 PM (GMT -6)   
I have only been on IV Claforan for 10 days ... I feel completely normal .. Happy, energetic and interested in life... ... I still have dental sensitivites but they are better and I still have shoulder pain. When I take Flagyl on the weekends I have joint pains and some sweats in the nights.

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 6/1/2009 5:29 PM (GMT -6)   
Oh the symptoms that improved are enormous... Mood , energy, clarity of thought, basically
My personality is back and I am happy again
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