posted
I have been in treatment on and off for the past 3 years. I have a CDC positive test for Lyme, but despite multiple bartonella tests, never got a positive result.
Well, I saw my doctor today, and I finally got a positive test for Bartonella Henselae via Quest labs after testing since early 2011!
As wierd as it sounds, I am so excited to have this infection validated on a piece of paper after suspecting it for so long. Its a major piece of the puzzle as to why I am still sick and have not gotten better after lots of Lyme treatment.
I have always responded to Bart meds, but have never treated Bartonella for long periods of time, and every time I stop them I immediately get worse. Now that we know I definitely have this infection, my doctor can target my treatment appropriately.
This makes me MUCH more hopeful about getting better!
As I have been getting better from Lyme, my Bart symptoms have been getting progressively worse:
- severe muscle pain - severe joint pain - knees, fingers, ankles, wrists, toes - all over foot pain - frequent headaches - costochondritis - swollen, painful lymph nodes - tendonitis in my elbows,and ankles - burning type of pain
Its been so confusing, because many of my symptoms could also be Lyme symptoms, but they have not been touched by Lyme meds alone.
What makes me so happy is that my immune system has obviously recovered enough to finally make antibodies to Bartonella, which is a really good sign!! It must mean that my bacterial load for Lyme must have come down enough for my immune system to do this.
This means that my body is healing albeit slowly and I am so excited about this!
Its been very interesting that it took a year of treatment to get a CDC positive test for Lyme but 3 years of treatment to get my positive Bart test. I really believe this is the bigger of my two infections at this point.
I hope that my story illustrates just how difficult it is to differentiate between these two infections as symptoms are so similar and overlap alot. Only time, and response, or lack of response to treatment, can help you tell the difference between them, and for me, getting my positive test finally validated what my intuition suspected.
I also hope that for those who are still searching for answers to your health, that you will be encouraged not to give up. Your answer, like mine, may just be around the corner, when you least expect it.
Posts: 187 | From Connecticut | Registered: Jun 2013
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posted
Congrats! I totally know what you mean about feeling validated with a positive result. That's exactly how I felt once I tested positive for Lyme.
My Bartonella test came back negative, but my LLMD says he's pretty sure I have it based on symptoms. I trust him and know he's probably right, but it really does help to have that official piece of paper with a positive result.
How have you treated for Bart in the past...which meds helped you?
Posts: 62 | From Chicago, IL | Registered: May 2014
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
What is your treatment plan for Bart?
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
I have been on doxycyline for about 3 years and that has been paired with either zithromax or biaxin at various times for Bart.
Whenever I have added a macrolide I have herxed hugely, and see a big improvement in my symptoms. But as soon as I come off a macrolide, my symptoms worsen, even if I stay on the doxy.
I took Doxy with Rifampin for about 6 weeks very early on in my treatment and my symptoms got so bad that I stopped it, but in retrospect, I now know it was a herx and that the rifampin was actually working for me.
So my doc wants me to go on a combination of Tetracycline and Rifampin for Bart now, and to stay on Bicillin shots for Lyme. He said that Tetracycline is stronger than doxy and feels we should give it a try as its also a good drug for Lyme.
This time we will slowly ramp up both the tetracycline and rifampin and stay on this combo for a while. Previously I would always change protocols every couple of months.
Sadly I cannot take Bactrim or a floroquinoline so I don't have too many treatment options for Bart.
My son did very well on doxy and rifampin and all his joint pain went away on this combo.
Posts: 187 | From Connecticut | Registered: Jun 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Thank you for your post-- sounds like a good plan! We slowly added rifampin with my daughter a few months ago (in combo)
and plan on keeping on it through the winter, and see where it goes- with regular liver/ CBC checks, of course. I think I am seeing for the first time now a 3 or so day cycle, never could determine an infection cycle before with her-
it's very interesting- from what I read, if you can tolerate the rifampin for some duration, it seems to be the choice for Bart,
limited are the safe options. Be mindful of your adrenals while on it- would like to hear your progress!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I am very happy for you! I know that piece of paper is very important in the world today. Validates what we all know.
Keep it up and get rid of this nasty stuff!
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
Surprise, why do you have to be careful about your adrenals on Rifampin? What does it do?
Thank you Dogsandcats! At least the piece of paper helps me not to look like a nutcase. I was trying to tell an APRN about my medical situation and she said she had never heard of Bartonella and promptly gave me the "you're a complicated patient" talk!
Posts: 187 | From Connecticut | Registered: Jun 2013
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
It can tax the adrenals for some people.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Ok, I will make sure I speak with my doc about this.
Posts: 187 | From Connecticut | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Yay!!!!
Congrats on your immune system being well enough to produce enough antibodies!!!
Hip hip hurrah!!!!
That is fantastic news-made my day Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Rifampin helps a lot of ppl. It helprd me alot but first herx caught me off guard cuz it was all psyc stuff. I becme suicidal. But i broke the pills up and took a tiny piece then more and more and in a few weeks/months on full dose a lot of bart sx went away
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Hi guys! My Name is Laura and I go to Penn State. This past summer I shadowed my grandfather who is a Lyme Literate Doctor and it really sparked an interest for me. Now, for my english class I am actually writing a research paper on Alternative medicine and the treatment of chronic Lyme disease. If anyone at all would be Interest ed in helping me with my paper by answering a few questions on a survey, please email me at [email protected] .. it would be greatly appreciated, and all personal information will be kept anonymous! Thanks so much guys.
Posts: 3 | From Penn State | Registered: Nov 2014
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posted
Email strangers at your own risk. Just sayin'
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- lcinelli21 / Laura,
I used to teach college journalism and I've done a lot of personal research in herbal approaches, as I've never had access to a LLMD or LL ND for more than a couple consults. So, I've had to figure out a lot for myself.
Usually, my PM is off as I don't have much energy to communicate but I will turn it on if you want to PM me with some basics about your paper and I'll see what I can do to guide you.
Designing - phrasing - the questions, alone, for ANY survey is really important. Not sure where you are with that yet if you'd like, PM me within one week's time.
While you are very likely exactly who you say you are and in this for the right reasons, there is no way for anyone to really know that just communication via the web.
It is too risky.
What would be best for both you and those from whom you seek a reply is not to either ask for or receive "blind" emails. Instead, connect with your local and state lyme support groups so they can work with you for the best approach to this.
After you have made some connection with the leader(s) of your area groups, then you might branch out to a wider audience.
You can communicate here by PM with other posters. That way, no one is trading private emails at all.
As you say you are "writing a research paper on Alternative medicine and the treatment of chronic Lyme disease" it is necessary to interview various LL NDs and LLMDs who incorporate support methods.
You can create your own thread on the topic and gather posted replies.
I will post one below that is vital to your studies on this matter -- to be sure you have a chance to see it. Beyond this, though, do consider your own thread for your topic. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- lcinelli21 / Laura,
In addition to what you've learned from your grandfather (a LLMD, as you say) . . . additional detail for your background research:
When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Herbal Safety considerations & reference books; etc.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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