Thanks
Posted by David Miller (Member # 21583) on :
(bump)
No one?
Posted by venus (Member # 16991) on :
I don't know of people on this board. Usually these things travel in packs. With that said, I think most of my problems are bart related.
Posted by nefferdun (Member # 20157) on :
I have both but after treating lyme and getting it pretty much under control my bart symptoms became much more obvious. I do not know for sure that this is bartonella or lyme but I get severe muscle pain that comes out now and then in my back and my right arm. I also got really bad cramps in strange places like my hip joint, behind my knee and my back as well as my legs and feet. Sometimes it would continue to hurt for weeks as though the initial seizing had pulled a ligament. It is helped by magnesium and the amino acids L lysine and L methionine. You have to make sure everything else is balanced, lots of B vitamins especially B6 and B12 and zinc, copper and selenium - as all of these things are interactive. I have a horse that ties up, which is when the muscles seize and stay locked, and I now understand how he feels! Afterwards he is stiff and so am I. It is recommended for him to also take acetyl l carntine and alpha lipoic acid both of which I take. If trying to exercise branched chain amino acids. I believe the bacteria probably cause a mineral imbalance more than actually damaging the muscle itself because it will go away and I will feel just fine.
Posted by map1131 (Member # 2022) on :
David, I was sick for 6 yrs with lyme & ????. Then I was bite by two lone star nymph ticks in summer '05.
Somethings changed and some new sx started a few weeks to months after those tick bites. One tick bite was red & swollen itched and finally went away after about a month.
That tick bite then became another tick bite skin eruption for months after that. Every thirty days bam. In between it would disappear and be slight pink colored scar and then a full fledged tick bite.
I finally conquered the fester. But then began my GI issues, skin eruptions around my body, more intense Bart sx like shin bone pain & muscle aching pain.
So I believe those ticks were bartonella carrying sobs.
IMO yes it's possible to only have bartonella. But could it be bart with other company like staph, strep, CMV, myco PN, EBV, etc.
I don't know how long you've been ill. But it takes years of reading/research to try to figure this whole big picture we call Lyme & Company(co-infections) out.
Pam
Posted by David Miller (Member # 21583) on :
Thanks for the input!
I'm pretty sure I have bart. I'm wondering if it could be just bart. It started last summer - weird rash (raised red dots all over my back) that sort of cleared up for a few weeks before the brain fog crept in. And anger/aphasia/insomnia/fatigue/memory loss. And migrating muscle pain.
Doxy pretty much controls it, but in December I went on tetracycline for a bit and all the neuro symptoms came out again, and my right shoulder started hurting bad enough to keep me up at night, and left hip started complaining. In the last couple of days the rash came back.
I was on doxy pretty early (probably a month after the bite, if I've got this right) and have been on it for most of the last 4+ months. Hopefully the lyme - if I have it -is under control and I can get some *floxacin to help finish off the bart.
I'm just wondering if I could have just bart, but it would have to cause wandering muscle pains to do that. Never had any swollen joints. Finally got an appt with an llmd next week, I'm looking forward to that.
Posted by kitty9309 (Member # 19945) on :
It is possible to only have Bart.
I have Bart- which did cause changing muscle pain until recently.
I also have Lyme, which caused joint pain (pretty much gone now) that also migrated.
Nice that doxy keeps it in check. tetra is not so good- does not cross blood brain barrier.
Posted by lymebytes (Member # 11830) on :
I think it is possible to have Bart and not lyme, but not likely.
An example - my brother in law tested at Igenex the first time and was Ehrlichia positive only. After some treatment, his immune system apparently was able to mount an antibody response. He was tested again and this time his test was also Lyme positive.
I would do more testing as you treat Bart.
If you have B.henselae only (aka: Cat Scratch Disease) it is self limited anyway, treatment may or may not speed recovery.
But there are many strains of Bart to consider, has your strain been identified?
Posted by David Miller (Member # 21583) on :
No, lymebytes, I haven't been tested yet. My PCP wouldn't run the genus test and I wouldn't settle for quests two species test. I assume if I had one of those the doxy would have eliminated it.
I do, finally, have an appt with an llmd. I'm hopeful that more doxy + some *floxacin will put me right. Hopefully I'm not putting the cart before the horse:)
Posted by jennie46 (Member # 20953) on :
quote:Originally posted by David Miller: Thanks for the input!
I'm pretty sure I have bart. I'm wondering if it could be just bart. It started last summer - weird rash (raised red dots all over my back) that sort of cleared up for a few weeks before the brain fog crept in. And anger/aphasia/insomnia/fatigue/memory loss. And migrating muscle pain.
Doxy pretty much controls it, but in December I went on tetracycline for a bit and all the neuro symptoms came out again, and my right shoulder started hurting bad enough to keep me up at night, and left hip started complaining. In the last couple of days the rash came back.
I was on doxy pretty early (probably a month after the bite, if I've got this right) and have been on it for most of the last 4+ months. Hopefully the lyme - if I have it -is under control and I can get some *floxacin to help finish off the bart.
I'm just wondering if I could have just bart, but it would have to cause wandering muscle pains to do that. Never had any swollen joints. Finally got an appt with an llmd next week, I'm looking forward to that.
I thought you were describing me! I am going through the same symptoms along with intense body burning, no rash though.
I also started treatment for lyme fairly early, 6 weeks after bite. I suspect bart but have not been treated for it. I hope we both can get the treatment we need. Good luck!
Posted by 17hens (Member # 23747) on :
wow, sounds like me too. i started out thinking i had lyme. after 4 wks i took 4 wks of doxy.
3 symptoms remained and got very sick off meds for 4 weeks.
then took doxy for 8 wks and again 3 symptoms remained.
over the next few months i was sick but this time symptoms were limited to extreme fatigue, moody, migrating muscle pain, waking very early, and a very sore heel. off and on i also have chills, mild headache and a swollen feeling throat. so i'm thinking bart too.
i'm wondering, has anyone heard of this book/author? is it reputable? The Diagnosis, Treatment and Prevention of Bartonella by J.S.
[ 01-17-2010, 11:56 PM: Message edited by: 17hens ]
Posted by GloriaP (Member # 23255) on :
17 this is a dr who has caused quite a stir here--Ive been afraid to post because of it
he and the book are NOT reputable by many folk's opinions and for many reasons--I guess youd have to PM someone to find out why
also they dont like Dr names to be used here at all
one of my friends had me join a new site called Lymegate where Drs names are allowed and the TRUTH isnt ever deleted--so I dont come here too much no more.
I saw many Drs--and yes I have Bartonella--its supposed to be rare to have a single thing--lots of stuff in same tick so more likely to have many things
so "just" Lyme or "just" bartonella--not likely I guess
Im on rifampin now and it helps
Posted by Jeff S. (Member # 21361) on :
David
I started treating my lyme about 6 months after I think I contracted it.
I took doxycycline and flagy (pulse) for about 5 months. My llmd and I were suprised when I didn't improve much.
He ordered a Fry Labs blood smear and it came back with the so-called Bartonella-like-organism. BLO
I continued to have muscle soreness and some mild neuro symptoms.
I started Rifampin and Tindamax 5 weeks ago and am adding minocycline next week. I have already noticed some improvement.
You may want to do some reading on this sight and investigate this BLO.
Doxy does not get to it. Levaquin, Rifampin and others will attack it more aggressively. Fry says Biaxin/Plaquenil but my llmd will not go near Plaquenil.
Jeff
Posted by kadee (Member # 21199) on :
quote: If you have B.henselae only (aka: Cat Scratch Disease) it is self limited anyway, treatment may or may not speed recovery.
Lymebytes, that's how it's being said, but this certainly doesn't have to be the case with immuncompromised individuals as lymies are.
Happened to me. After years with Lyme, I got lately infected with Bart. Hens., and it was NOT selflimiting but got horribly worse during the last months.
So my assumption is, that Bart gets a hold much more likely, when you're already struggling with some other bad infection.
Posted by Tracy9 (Member # 7521) on :
Lymegate, started by Fin24, Cave, and Cobweb.
Posted by kday (Member # 22234) on :
While I was treated for Lyme for a while on antibiotics, my symptoms are mostly bart. My bart came with an indescribable amount of anxiety, and Lyme treatment just got the bugs mad.
Now I am breaking out in bart rashes all over my body. They don't look so bad right now, but when/if the rashes become more pronounced, I don't think any doctor could deny it. They are on my back, next to my left armpit, and my legs. It's exciting to see these new rashes appear after stopping Lyme treatment and doing solo bart therapy on HH. I may average like 6-7 mg of benzos a day right now (3 brands), but once the herxes calm down a bit, it's such a relief. I've only been on the med for a week and herxed the first dose. My non-LLMD doc confirmed the herx at a doctors appointment and wanted the name of those chinese herbs and that doctor (haha). I had a low grade fever that went a couple hours later. I am very surprised at how I respond to HH alone. I am taking nothing else right now, and feeling the most hope I had since becoming ill.
Posted by tick battler (Member # 21113) on :
I think it is HIGHLY unlikely that you only have bart unless you were scratched by a cat.
tickbattler
Posted by lymebytes (Member # 11830) on :
It is possible, but unlikely I think. My brother in law tested positive for only Ehrlichia, it took several tests later and LD turned up positive as well.
Cat scratches known for b.henselae, are surely possible, but a bite from a cat is a sure thing, that is how I got it the second time around. Cat scratches never gave me Bart the first time, a tick bite did.
Posted by Hoosiers51 (Member # 15759) on :
I will give my experience/perspective.
My LLMD thinks that the first tick bite I got in childhood only gave me Bartonella henselae.
I clearly remember having a fever of almost 103 while the tick was still attached to my scalp. We actually realized I had a fever, THEN the nurse found the tick
Lyme could NOT cause a fever that quickly. I ended up having some troubling symptoms, but overall, had a pretty normal and healthy childhood. Until a couple weeks after a trip to the tick country over 10 years later.
So, my LLMD thinks that the first tick bite gave me Bart because it's one of the only TBD's that can cause a fever that quickly (though perhaps it doesn't always do that to everyone?) and also based on the symptoms I reported having after that first bite.
He also said that he thinks if I would have gotten Lyme from the first bite, I would have been sicker or had a more prolonged illness, not just went on with my life. He said he thinks I got Lyme later in life, because there was no other reason for me to suddenly become ill for no reason after my trip to the NE ten years after the first bite.
Anyways, with the first (possibly Bart only) bite, it is hard to know if these symptoms appeared before or after the bite, because this was many moons ago. But we think this all started after the bite.
I develeoped OCD as a child. Would have temper tantrums. Strange psych symptoms like extreme guilt over little things. Also, despite being intelligent, I had some problems with reading that were not dyslexia....it was more of a concentration/processing issue just with reading.
At one point I remember going to the doctor and telling him I had minor pains and aches in my legs, arms, and tummy.
But the important thing to note is that none of it really affected my day to day life, except the psych symptoms. I could run, play, had energy, etc. It wasn't until later in life that I knew what it felt like to be a "Lymie."
Anyways, my point is that yes, you can only have Bart.
But, based on what you've said, it sounds to me like you might have Lyme too, because your physical symptoms seem pretty significant.
I personally believe that just Bart, in the complete absence of Lyme, is not really life-changing for otherwise healthy people (people without AIDS, etc). I believe people with just Bart (not being weighed down with Lyme) are able to go to work and normally function, with the exception of perhaps severe psych issues or cognitive issues. But physically, they can normally function, so they don't consider themselves "sick."
They can generally get out of bed in the morning, exercise, make it to family functions, work, etc.
I think that your bodily symptoms, if the severity is moderate or worse, are probably severe enough to merit being infected with something else.
Also, you seemed to herx on Tetracycline, and to my knowledge, that is not a great Bart drug.
Remember, I am NOT a doctor!!!!! Most of this is based on my opinion.
I have just done a lot of reading and thinking on the issue, since I have had multiple tick bites....some that disabled me and some that didn't.
While I did have muscle pain from the first tick bite, it was minor, and I was able to forget about it after like a week and never noticed it after that.
Hope this helps some. Good luck!
ps--I should mention that I did test positive for bartonella henselae in an IgG titer through Quest, so that could have helped lead to my doc's conclusions.
Posted by NeuroEcclectic (Member # 17783) on :
I was wondering the same thing tonight. Can bart
alone cause CNS lesions? Can Bart mimic MS?
Posted by Hoosiers51 (Member # 15759) on :
With or without Lyme?
I would say with Lyme, maybe. I think that having Lyme can amplify Bart's effects to include lots of chronic health issues.
I would find it hard to believe that Bartonella, on it's own, could cause MS. Perhaps there is a "bartonella-like organism" out there that could, but just the regular Bartonella that has been discovered for awhile, spread by cats, etc....I kind of doubt it. Especially in an otherwise healthy person.
Posted by MomandDad (Member # 24589) on :
Hi all!, the symptoms of migrating muscle pains have been a definite YES! with Hubbie, and he has only been ID'd definately with Bartonella in Aug 2004. Also he had been bitten by a cat.
I know for him Doxy hasnt been enough, we...hehe! He...has been on it for a year before, it helps but he needs something more. Wanda
Posted by Dekrator48 (Member # 18239) on :
Here's an article about a Vet suffering from Bart induced MS.....
Dekator, I just read the article you posted a link for.
I must say that I felt something in my heart
when I read it. I have been scratched by many
cats from childhood and through college. Geez...
I never liked cats. lol
I thank you so very much,
John.
Posted by NeuroEcclectic (Member # 17783) on :
Also-is Bartonella hard to proof ob lood tests as Lyme?
Posted by NeuroEcclectic (Member # 17783) on :
sorry- is it as hard to prove with blood tests
as is Lyme?
Posted by Dekrator48 (Member # 18239) on :
You are welcome John!
It is my understanding that it can sometimes be hard to prove with blood tests.
I believe there are strains that are not even tested for.
Posted by David Miller (Member # 21583) on :
There are genus tests with Quest and Clongen that test for anything in the bart genus.
I was negative on that test, but still diagnosed with "bart" or BLO because of my rash.
I responded very nicely to cipro - the rash is almost gone in a couple of weeks, the irritability and brain fog were gone within 24 hours of taking it.
Funny thing was after about a week with just cipro (LLMD wants to try one new med at a time) the brain fog came back in a big way, but got better after going back on mino. I'm guessing from that that I've got lyme as well, just didn't have too many physical symptoms with it.
Posted by Karen Mc (Member # 23354) on :
Interesting article Dekrator48 thanks. I too have been scratched many times by cats as well. I have bart and bab along with the lyme.
Jeff S. If you see this Im just curious why your LLMD isn't for plaquenil? My LLMD had had me taking it for months. Just wondering