posted
Does anyone else have Bartonella in addition to Lyme and Babs? If so, anyone seeing improvement with their symptoms since being treated?
Last visit my LLMD sent my blood to Fry Labs to test for baronella an babesia. He tested me for a different strain of babesia than the original test my first LLMD had done through iGenix. That came up negative as well.
However, this is my first time my blood has been tested for bartonella. Prior to this I had been clinically diagnosed as being positive.
I was told that sometimes the test from Fry Labs comes up ever so slightly positive with just a few organisms showing. However, my test was "positive and very much so." I was told that there were many, many organisms visible in the blood smear.
Bitter sweet for me as usual with all of this. It's good to know I'm on the right track and have an LLMD that I trust.
However it kills me to know that I've been suffering for 16 years.
-------------------- Misdiagnosed and untreated from 1993-2008. - iGenex positive western blot for LD: 9/08 - Clinical diagnosis for Babesia: 2/09 - Positive blood smear for Bartonella: 3/09
Started treatment: 1/09 Posts: 91 | From New Hampshire | Registered: Jan 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Along with the Chronic Lyme and Babesia I have both Strains of Bart. B.Henselea and B. Quintana.
I found out 2 years ago. I don't know when I was bit and didn't have the rash. Since diagnosed
I have had no improvement. I am on my 8th month of IV meds along with Zithro,Mepron,Levaquin,Plaquenil.
So to answer your question. No improvement here.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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posted
Thanks for the response. Not very encouraging. I'm sorry you are not improving.
what are your symptoms if I may ask?
Thanks
-------------------- Misdiagnosed and untreated from 1993-2008. - iGenex positive western blot for LD: 9/08 - Clinical diagnosis for Babesia: 2/09 - Positive blood smear for Bartonella: 3/09
Started treatment: 1/09 Posts: 91 | From New Hampshire | Registered: Jan 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Well if I remembered them all I would tell ya! LOL.
posted
Yes. I had terrible anxiety and panic attacks, gland swelling, chronic recurrent sinus and throat infections, moodiness, brain running a million miles and hour, extreme irritability, chronic fatigue and deep deep brain fog/depersonalization.
This is all gone since Bart treatment (5 months levaquin/1 month rifampin doxy/1 month rifampin septra plus whatever I am on now.
I think I still have a bit to go in this area but much improved thanks mainly to the levaquin. I will more than likely do another few months on it in future.
I cant attribute all of these to bart of course. I dont think any of us can. We tend to over simplify things a little with these diseases in an effort to try and understand and feel in control.
All I can say is levaquin is a great for killing bugs inside cells so it probably worked well on all bugs.
I still have some slight shin pain and sensitive soles of feet int he morning which according to Dr B is classic bart.
I still have plenty of issues but at least I can say the above ones are gone.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
I just received and completely read the entire book in a few hours. OK...most of the book is pictures of different skin manifestations of the buggers.
The author of the book stated that HH seemed to be the treatment of choice, although he recommended "high" levels for eradication.
I am thinking of trying this route for my son. He has never received lyme or bartonella treatments.
I am going to contact this certain doc to find out what high doses of HH means.
Jen
Posts: 236 | From Illinois | Registered: Feb 2009
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posted
thanks for the responses. NMN am i reading this correctly that the depersonalization has gone away you? I've been suffering with this symptom all day every day since 1995.
If I could just get that to go away, I would be absolutely thrilled. I'd do anything it took just to have it go away.
As you bartonella suffers know, this symptom is terrifying. If I knew of just one person who went from suffering with this as a constant symptom to being relieved from it, that would be huge for me.
As I am sure you all know, this disease is awful and any hope you can fine keeps you going.
Thanks for the responses!
hoot: what am i missing. what book did you receive? I don't seem to see anything in this post about a book.
-------------------- Misdiagnosed and untreated from 1993-2008. - iGenex positive western blot for LD: 9/08 - Clinical diagnosis for Babesia: 2/09 - Positive blood smear for Bartonella: 3/09
Started treatment: 1/09 Posts: 91 | From New Hampshire | Registered: Jan 2009
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I really sympathize and agree with you about the deep fog associated with Bartonella. Dr B is pretty much bang on with a lot of his observations about this.
I had it everyday for about 6 months. It started when i started treating lyme. Messed me up totally.
Then I did a couple of one month pulses of cipro and it got a little better. I was doing amox in between.
After the second round of Cipro I switched to doxy and the fog seemed to just lift and I really felt I was in the clear.
Unfortunately about 4 months into the doxy it started to return with some other stuff that had been gone.
It seemed once I stopped treating Bart it crept back in.
I did not manage to get back on track until I was put on levaquin by Dr H. This gave me a really hard 2 or 3 months but I came out the other side again fog free, along with the other ones mentioned above.
I really think it will lift for you with the right treatment. Definitely consider levaquin as your next treatment or adding it in. There are side effects to watch out for but most do well.
Take care
Neil
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
Yes lymetoo....you are probably right. At the same time I also feel the less crap I feel whilst on heavy treatment also tells me how much I have improved if you know what I mean
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
Lymetoo, i'm too early in treatment to answer this. I feel slightly worse since starting. I am waiting for the good days to come.
Neil, you have made my day!!!!! Do you live in Ireland and fly to the US to see Dr. H in NY?
Until April when I see my LLMD in the office again he has me continuing on this current stage of the protocol (omnicef, mepron, zithromax, artemisinin plus a bunch of supplement).
However, based on the positive bart test I was told Levaquin will be introduced in late April. A couple of other abx were mentioned as well as the possibly IV. So sounds like I am on the right track.
thanks for responding to this post. After 15 years of learning to deal with and accept this, to know it CAN go away gives me a newfound sense of hope!!
-------------------- Misdiagnosed and untreated from 1993-2008. - iGenex positive western blot for LD: 9/08 - Clinical diagnosis for Babesia: 2/09 - Positive blood smear for Bartonella: 3/09
Started treatment: 1/09 Posts: 91 | From New Hampshire | Registered: Jan 2009
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posted
Hi Laura.... Glad to have helped. Yes unfortunately I do have to fly to NY. I have been out of work 2 years next month so you should see my credit card bill
Its an all too familiar story sadly.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
I feel for you Neil! It sounds like you are on teh upswing so hopefully you'll have a windfall of good fortune to follow. Are you out of work due to your illness? I've been very fortunate in that my illness has not impeded my ability to work in the trade I am trained.
Best of luck!!
-------------------- Misdiagnosed and untreated from 1993-2008. - iGenex positive western blot for LD: 9/08 - Clinical diagnosis for Babesia: 2/09 - Positive blood smear for Bartonella: 3/09
Started treatment: 1/09 Posts: 91 | From New Hampshire | Registered: Jan 2009
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