posted
Hi. I have been chronically ill for over 10 years with the last diagnosis being ME/CFS. Seems by what I am learning here I may have a Bartonella infection. Taking Banderol & Samento drops for several weeks seems to have brought out some chronic smouldering symptoms to the forefront.
Just to give you an idea which symptoms I have that seem to fit the symptoms for Bart.
IE. Shins have had some painful cramps at night now after several years of numbness increasing in legs and feet. Also muscles in legs twitch often times now. My dry, red, burning eyes are worsening now. Left eye has a fiery patch of burning redness on the white area at the outer corner. Fatigue is the sick type like you are coming down with something rather than the exhausted type. Palpitations and soreness in heart area and lymph nodes in left armpit area have always been sore but waxing and waning. Sore throat comes and goes but is on the left side only although I do have red crescents on both sides. and more... ETC.
I don't know a lot about Bart yet. Learning as fast as I can to make good decisions ahead. Plan to post my questions as individual subjects to hopefully get some answers. Not sure if that is acceptable here but seems like most effective way to learn from you in here ASAP. If this isn't the way you are suppose to do things here please do instruct me on the proper method. Thank you.
Hard for me to find good info about Bart by Google method. So much is about the cat scratch fever only even though I enter systemic Bartonella. Plus it is very difficult to read with one eye as my left one is not cooperating these days. lol
So please do share your opinion with me about the best lab & test for Bartonella so I may discuss it with my doc ASAP. Thank you so much.
~Dee
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Our LLMD did the Bart test with specialty labs in CA (I believe a division of Quest).
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Thank you Tim. My doc has used that lab many times in my treatment but I didn't know they had the Bart test.
Online I saw a lab called Fry Lab. I wonder about it.
Often times I have noted in our various chronic ill communities advise on one lab over another for a specific test for best results. So I wonder which one would be the most accurate?
Anybody know?
Thanks.
~Dee
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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posted
Galaxy Labs tests for all of the known strains. They have a pretty interesting website you might want to check out.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Galaxy Labs is supposed to be the best -- they are the only ones who test reliably multiple ways -- PCR and culture. They also test for strains none of the other labs look for.
The disadvantages -- have to be off antibiotics for 4 or 6 weeks to get a reliable test. And they are very expensive.
My 2nd choice would be a blood smear from Clongen lab. Cost is $195 plus $50 for the test kit. Print off the order form from their website and then you have to write in the test. Call the lab if any questions.
Clongen can not tell you what species they see, but hubby has done their test multiple times -- about every 6 months for a couple of years. He started with numerous cocobacilli and eventually decreased that to none. His bart symptoms were primarily seizure-like episodes which improved as the blood smears improved.
This is not medical advice, just my opinion based on hubby's experiences.
You might also be interested to know that Buhner who wrote the Healing Lyme book is now writing a book on herbal treatment of bartonella. He has updated his herbal protocols for this coinfection on his website.
Personally I think it takes a combo of herbs and meds for bart -- especially if it is in your nervous system which an eye infection would indicate. And if it is affecting your heart that also could be very serious.
Buhner suggests the use of stephania root for eye problems from lyme and also bart I think. Available from Woodland Essence.
Bea Seibert
P.S. While it is possible to only have a bart infection, it is much more common to have that plus lyme and a few others.
Make a list of all major symptoms and see if there are any that do not fit a bart diagnosis. Then start looking for something else to explain those other symptoms. Infectious disease docs are stuck in the one infection mode, but real life is not that simple for many people. Anything which significantly suppresses the immune system can allow multiple infections to be active.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Excellent RC1 & FuzzySlippers. Many thanks to you. So helpful!
I will go right now to Galaxy Labs to see about it and also read at the link you supplied for Bart Info.
~dee
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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posted
I truly appreciate your suggestions based on your experience Bea. Thank you so much!
After I read fore mentioned I will then read your helpful link, etc. also.
I have never heard of stephania root. Will study it next. Thanks again.
~dee
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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posted
I have been reading for hours and am to exhausted now to reply.
But first I wanted to thank you for your replies. Will get back here tomorrow. Good night now.
~dee
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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posted
you should google Ed breitschwerdt for publications about bartonella. Bartonella is not cat sctratch disease only.much much more. the professor is at the forefront of research
-------------------- hansemand Posts: 160 | From europe | Registered: Dec 2011
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posted
Been pushing it too hard so have a mushy brain now. But will get back to doing research ASAP. Thanks so much for your input hansemand. Making a note to look up Ed B. That name is familiar so I do think along the way I did read something from him. Can't think right now. hahaha.
~dee
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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Just so it might make it easier for you -- most, if not all, of Dr. Breitschwardt's published articles and studies are included in the Bartonella Information Thread I gave you, above.
The text of some of the articles is pasted within the thread in parts. It's an overwhelming thread, I know. Here's the link again:
posted
Thanks so much Fuzzyslippers for your considerate help. My brain is a bit better today, so far, so I will try to read the thread you offered.
I spent a lot of time looking at pics of Bart rash & reading more. What I found interesting is that I have had sudden pigment changes in my skin. Now wonder if there other causes besides Bart? Autoimmune disease? Vitiligo comes to mind.
My skin manifestations have been: my worst toe/foot (numbish, tingling, pain at times, etc.) has had a brown spot on the bottom that quite suddenly appeared years ago.
Then I got a white patch on my cheek and the skin also had a different texture. Felt a bit itchy & prickly. If I rubbed it skin would welt up a bit emphasizing the shape of it. It has faded and gained some pigment. (doesn't sunburn more easily) (doesn't welt up so much now when I rub it)
Last summer I suddenly began having white patches on my neck and hands that easily sunburn. No pigment. (Was think'n all the years of Doxy has ruined my skin)
More recently a brown spot just like on my toe appeared overnight on my hand.
The last year or so I also have had a patch 2"x3" on my back that is (prone to itchy bumps... rash? ... flea or mosquito sized bumps) the skin is bumpy with a subtle pattern. It is very much like the original patch on my back in 2001 that started my downward spiral... which was mainly fatigue, new and extreme painful migraine/sinus headache, tooth pain, photo sensitivity, chemical sensitivity & some food intolerance. Sun, chemicals and certain food increased symptoms.
A year later the heart pain, inflammation, palpitations, high blood pressure, abnormal EKG, etc. My GP put me in hospital for a week for tests. But tests were all OK except my left ventricle at the end of the smallest branch has blocked capillaries. Now I read Bart can destroy capillaries I find it very interesting indeed.
Anyway, as I said, I do not have the classic Bart red streaks or the blisters but I do have some rather strange skin manifestations that in my thinking now after reading a lot could possibly be Bart.
Several years ago I was so deflated about it all though when a LD community well beloved LLMD I had visited did not seem all that interested in such things. lol I almost felt rather foolish telling him all my little symptoms when I know he saw very sick patients with huge & apparent manifestations. If you follow my drift?! When my WB didn't pan out I gave up the whole idea.
Then via my ME/CFS doc I was tested high titers for C.pneumonia so have been treating it for several years hoping it was all I needed.
My illness began high end of moderate to low end of severe ... somewhere in that measure. But with strict discipline I have kept it in the moderate zone overall since those first few years.
But the last few years my brain seems to be getting worse faster so I am working harder now to find answers before I don't have enough left to work it out. lol
Yesterday I went to my oven to turn it on at 350 degrees but instead turned on the timer for 60 min. Then like a bubble popped when I realized it. I could not understand what just happened? Things like that I never previously had trouble with are becoming more regular in occurrence. Lack of focus/concentration worsening is becoming too often for my comfort. But that is another subject entirely. lol
Well, I guess I got that off my chest lol so now I will go read the thread you offered me. Thanks again.
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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posted
Dee- one of the things that get messed up when you have a biotoxin illness (mold, Lyme) is that our MSH Melanacyte Stimulating Hormone goes really low. That hormone is in part responsible for skin pigment.
I have developed a lot of areas of hypo pigmentation also, another weird thing for me is that one day in the sun and my skin turns ridiculously dark. Everyone askes me how I got so tan. I have never tanned up like this before.
Posts: 845 | From Northeast | Registered: May 2011
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I am a little confused. Have you been getting treatment for lyme and are just now thinking you might also have bartonella?
Or did someone tell you that you do not have lyme based on your test results and so you have not treated that yet?
I know you did not have a positive Western Blot, but a real LLMD would treat based on clincal symptoms. You have had more bands show on your tests than hubby has ever had and he definitely has lyme. He did get lucky once in 2003 a couple of years after he first got sick and had a positive PCR test for lyme.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
RC1 thank you. I had not heard about the MSH or that it can go low. I will Google and learn more about it for sure.
I avoid the sun as much as possible as it tends to flare up my symptoms. Also just 15 min. in the summer sun burns my hypo pigmentation.
Hoping off Doxy now I won't be so sensitive this summer.
That is also interesting about your tanning ability now. I see some parts of my skin going in that direction but only makes my skin even more blotchy and uneven. lol oh well...
~dee
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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Yes, I was doing a combo that hopefully would kill both Cpn and Lyme. My ME/CFS doc agreed to prescribe for me so I did not return to the LLMD.
We realize I have several infections going on but Cpn had high titers so we tackled it first. I was allowed to double the Doxy dose not knowing if I have Lyme for sure. Also I felt better on it than the usual dose for Cpn.
But after a couple years on the combo of Doxy twice daily, Azith MWF & Tindamax pulses monthly I felt my body needed a break. But I can go back on it at anytime.
I wanted to try the Banderol and Samento to see what would happen and clear my body of abx.
When the set of symptoms I described surfaced I began to explore what it meant. It was such a strong reaction so I felt it was important to figure out what it meant. After studying online Bart or a BLO looks like a strong possibility to me. My husband has reviewed things with me and he agrees I need to look further into this.
I emailed my doc today with my concerns and will find out more what to do next when I get a reply.
That is very interesting about your husband. Thanks so much for sharing it. It means a lot to me to know that.
~dee
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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posted
Remember you don' t have to test positive for these co-infections to have them. Shin pain is a big tip off to Bart. Not real versed on labs. In my opinion, a lab is a lab. But, I'm sure many would not agree. I've only had tests through lab corp and igenex. I've was told they are the best. At least I know for babs..which I delt with, the babs fish by igenex is very good.
Posts: 267 | From South | Registered: Oct 2011
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posted
Hasemand.. A breakthrough at Galaxy? So.. Does that mean that a person who has tested negative at every other lab numerous times can how get a test at galaxy and be positive? Any idea how to get tested there? I'd like to know because I have a friend with suspected bartonella. She can't afford a Lyme doc. Wonder how she can get tested through this lab? Thanks.
Posts: 267 | From South | Registered: Oct 2011
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Thanks so much for your replies lost 11, hansemand & manybites. Always good to hear from someone here sharing on Bart, etc.
After a month on it I am doing better on the Banderol & Samento than I was doing on the combo antibiotics.
I think I will add knotweed in a few weeks.
~dee
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
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the scientific work by Ed breitschwerdt has been revolutionary regarding bartonella. you may google and learn this am,ong other things A very large portion of bacteremic patients have NO antibodies. It is the only lab that makes a reliable test.
-------------------- hansemand Posts: 160 | From europe | Registered: Dec 2011
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I tested pos. for Bart hensalae and Quintana through Specialty labs.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
Hasemand.. Was able to get my primary to order the test kit from galaxy. Also the new Lyme blood culture from advanced labs. Was told by advanced labs that if one has an active infection.. That blood culture will pick up the buggers. Been off abx long enough to get a good read. Excited about this because that blood culture is the best one so far for detection of active Lyme. I have to wonder how many people out there are just blowing there body's apart with all those toxic abx.. When perhaps they don't even have an active infection.
Posts: 267 | From South | Registered: Oct 2011
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posted
In my opinion.and i know this is unpopular here, lyme ios not what most uncurable lymies deal with. Bartonella is an extremely difficult infection to cope with; and unfortunately there are numerous ways to get infected.Ticks are one one of them.
-------------------- hansemand Posts: 160 | From europe | Registered: Dec 2011
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