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New here and have a question - Anyone with only Bartonella?

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Posted 6/27/2018 11:40 AM (GMT 0)
Hey all, been scanning this forum for a few weeks now (as well as other forums) looking for answers to my many unexplained medical issues over the years.

A brief history:

In 2011, I started experiencing a load of odd visual phenomona, these included a sudden increase in floaters, strange lights (often resembling lightning), some kind of latency issue (where if I look at something for a few secs the image remains after I look elsewhere, you can simulate by staring at your hand for 30 seconds against a white background and then look somewhere else, a "ghost" image is then visible). This developed into regular sessions of temporary blindness in my left eye. At that time the Neuro's ruled out the obvious possibilities (tumor etc) and then said its physcosamatic.
So I just learnt to live with it.
Then in 2013 I was struck suddenly with a case of unexplained Myocarditis, really snuck behind me with a baseball bat, again this was deemed idiopathic (no known cause), a year later, after experiencing sever chest pain and arythmia I was incorrectly diagnosed with coronary heart disease! This was however ruled out during a procedure to insert Stents, in fact the surgeon, quite angrily, told me that I have no issues with my heart and that I should look for a more skilled cardiologist. After a few follow-ups with different cardiologists I was told there is no issue and that perhaps I should look elsewhere :/
In light of that, I again, learnt to live with the chest pain and grew so used to it that I forgot about it!
THen last year, I suddenly lost all feeling in the saddly area, very scary stuff.. I was admitted to a neurological clinic and was diagnosed with spinal chord ischemia (again idopathic). Two months after been discharged the real adventure started, I started to devolop a lot of neurological symptoms, these include but are not limited to:

Tremor
Twitches (fasciculations)
Cold water feeling been poured over the left side.
Warm water feeling primarily on the left side.
Migraines (sometimes with aura, sometimes without)
lack of co-ordination
Vertigo
Motion sickness
joint pain, primarily my right knee

The nasty symptoms that scare me the most:

Toungue twitching
what appears to be muscle wasting (however no apparent clinical weakness)

These symptoms promted me to really start chasing the medical world for difinitve answers, they ruled out a ton of possibilities (as well as they can) and after around 12 MRI's, cat-scans, 2 EMG's, a few EP's etc I was told that it is all in my head :/

So I decided to start flexing my own brain and started searching for links between my medical history and the more rare issues and, of course, came across Lyme disease. Asked my GP if there is any record of me been tested and he said that the neurologists have already ruled it out based on a lack of antibodies.
I insisted on another test and also added that I would to be checked for other possible co-infections.
Lyme came back negative but i had high levels of antibodies for B Hensea and B Quintana. These seem to tie up with the Myocaritis and possible the spinal ischemia (if Transverse Myelitis was the underlying cause.)

My question is, in the absence of Lyme, has anyone else had a similar experience and only been infected with Bartonella?

I assume I got it as a child as we had a ton of cats and cat scratches/flea bites where a common issue, especially when we took in strays.

I would love to be at lease 99 percent sure that Bartonella can explain the issues, but it appears that true medical research is thin at best, and oh so controversal as most doctors dismiss it as benign (Luckily my GP has taken it seriously)

I have also started a course of Ciprofloxacin, which I believe is a great med for Bartonella.

The point that bothers me the most is the toungue twitching.

Thank you if you read this far, I know it is a mouthful to say the least!
Posted 6/27/2018 12:01 PM (GMT 0)
Bartonella is pretty common but I wouldn't necessarily rule out lyme because you didn't test positive for it. Cipro is really good for bartonella. Bartonella is a pretty significant immune inhibitor so hopefully treatment will bring around good results.

Sorry to hear about the 'chase' to find the ailment. Unfortunately a pretty common story for those of us with tick borne illnesses. Make sure to do your research so that you are getting adequate treatment. A lot of us were not treated long enough.

If you are new here, be sure to check out the thread, "New to Lyme, Start here!" It has more information about Tick borne illnesses/symptoms, ways you can improve your diet/detoxing and helpful links. Feel free to ask any questions you have. A lot of the members on here have great information.
Posted 6/27/2018 12:10 PM (GMT 0)
Thanks for the response Opugirl, I do have an appointment with a lyme specialist in a few weeks to ensure Lyme is not present. The frustrating bit I find in the research I have done over the months is the lack of information regarding Bartonella, I have been reading the research done by certain universities and a few case studies that potentially link Bartonella to these types of anomolies, but these cases are few and far between and could ultimatley be coincidental. Ultimatley, I am wondering if Bartonella can cause these anomolies with out any additional infections. Primarily as I dont believe cats carry Borrelia (I may stand under correction though). These stealthy Bacteria are a nasty bunch
Posted 6/27/2018 1:32 PM (GMT 0)
Hi Ed, your description of the eye problems is exactly what I experienced with Bartonella. Except that I also had a blood clot that caused retinal vein occlusion and macular degeneration in the right eye.

Bartonella promotes VEGF in the eye which caused many of these problems. I have had to get eye injections of Avastin (anti-VEGF) to return my eye to normal.

As far as the other symptoms, many of them I would attribute to Lyme. See, Lyme loves tissue, so when it goes and buries/drills itself into tissue, at least for me, it touches or provokes my nerves, making them twitch, tingle, and do weird things (just like your tongue is doing). These symptoms would happen every time I would tackle Lyme with herbs or antibiotics. As if Lyme noticed the abx and tried to bury itself deeper into the tissue, causing these symptoms.

Rifampin is also a good abx to take for Bartonella by the way.
Posted 6/27/2018 2:37 PM (GMT 0)
Thanks for that Healing! Mmm, that would explain the twitches. I did notice that a lot of my symptoms seem specific to Lyme, so will push that point when I see my doc next time. For me the twitching has all but dissapeared since I started the Ciprofloxacin, only the toungue occasionaly now. Some of the other symptoms have become more intense though, the warm feeling which was normally isolated to my left foot is now consuming the whole leg, my short term memory is comparable to a goldfish smile I also keep catching myself staring off into space with no particular chain of thought. I would assume this may some type of Herx reaction, but if it is I would guess this would fall under the "mild" definition. (I was expecting to feel horribly ill!)
Will keep Rifampin in mind for my next doc visit.
I seem to be very lucky as my GP seems to have a much deeper understanding of these ailments then the numerous Neuro's I have seen the last few months!
Posted 6/27/2018 3:01 PM (GMT 0)
I am as close to 100% sure as I've ever been from reading a symptoms post that you have Bartonella - and the antibody tests prove it! You checked off every symptom I've ever had and a few more, I also got it in childhood from fleas. Get yourself to a LLMD. smile I can think of at least one member here who had only bart.

Post Edited (acarined) : 6/27/2018 9:04:29 AM (GMT-6)

Posted 6/27/2018 3:16 PM (GMT 0)
Cheers for the response acarined! Yep, im hunting for a good LLMD, seems hard to do it in Germany though as the medical system here is quite hard to navigate and very regulated, but I did find a clinic specialising in tick-borne disease so hopefully they can do some proper testing so I can try get a clear picture of what to target! My GP has been a great help, he even called a few docs in the States to get there opinion, but he is not trained specifically in Lyme, so not a LLMD unfortunatley.
Posted 6/27/2018 4:21 PM (GMT 0)

EdTheRed said...
Thanks for the response Opugirl, I do have an appointment with a lyme specialist in a few weeks to ensure Lyme is not present. The frustrating bit I find in the research I have done over the months is the lack of information regarding Bartonella, I have been reading the research done by certain universities and a few case studies that potentially link Bartonella to these types of anomolies, but these cases are few and far between and could ultimatley be coincidental. Ultimatley, I am wondering if Bartonella can cause these anomolies with out any additional infections. Primarily as I dont believe cats carry Borrelia (I may stand under correction though). These stealthy Bacteria are a nasty bunch

EdTheRed,

I'd like to add a couple of things that haven't been mentioned yet.

1) Ciprofloxin is a quinoline drug. That class of drugs, while effective on bartonella, have risk of some very serious side effects that can occur even after stopping the drug, if I recall correctly. Those who are damaged by them refer to it as being "floxed." Just want to make sure you are fully aware of the risks involved.

2) Bartonella is usually treated with 2-3 antibiotics at the same time. Girlie is the antibiotic guru. She can explain more on that.

3) Do you have or can you get a copy of the Lyme Western blot results? If there are ANY positive bands, you can tell us which ones they are. The entire test is only positive if all the bands the CDC requires are positive. Many people have only one or two positive bands. Some have no positive bands.

4) Stephen Buhner has a book on treating Bartonella. He outlines an herbal protocol and explains what bartonella does in the body and the various symptoms it can cause. I'm pretty sure he mentions many of the issues you've already dealt. Definitely the heart issue. Well worth getting and reading.

5) You are right. The medical literature on chronic bartonella in humans is scant. However, there is quite a bit on bartonella in veterinary medical literature. I am of the opinion that whatever it does in mammals, it can also do in humans. I am not a scientist, so I use a common sense analytical approach to understanding these infections. I don't need some large double-blind in-vivo research study to convince me of the probabilty of something being possible. 😊

6) According to Buhner, bartonella affects the entire vascular system. It also affects the nervous system, as does Lyme.

Hope the Lyme doctor you're going to see is a good one.
Posted 6/27/2018 4:37 PM (GMT 0)
I forgot to mention there are a couple of doctors in the states who are considered to be on the cutting edge regarding that infection. Here's some links:

www.northcarolinahealthnews.org/2013/12/05/bartonella-is-everywhere-so-why-dont-we-know-more-about-it/

/tmgmd.com/news/
Posted 6/27/2018 4:43 PM (GMT 0)
Thanks Walkingbyfaith, wow, knew it was dangerous but not so risky! :/ Hope my GP knows what he is doing! Definitley call him tmw on that one
The antibodies they found where as follows:
Bartonella henselae - IgG 1:256 (twice confirmed)
Bartonella quintana - IgG 1:128 (twice confirmed)
The IgM values where undetectable which my doc said indicates its not a recent infection.
All other pathogens where undetectable, but I will still pursue more testing.
Yep, point 6 fits neatly into my history of myocarditis and the neurological anomalies.
Posted 6/27/2018 4:53 PM (GMT 0)
Thanks! Ah yes, these docs where the reason I started hunting for these nastys in the first place! Led me eventually to an interesting paper on bartonella and a few case studies of individuals with unexplained neurological issues, the similarities between these cases and my own is massive. Found another case of Idiopathic Transverse Myelitis in Switzerland back in 2015 that also had Bartonella as an underlying infection. So anectdotally the evidence is there. I will be really happy to at least know what to target after all these years!
Posted 6/27/2018 5:31 PM (GMT 0)

EdTheRed said...
Thanks! Ah yes, these docs where the reason I started hunting for these nastys in the first place! Led me eventually to an interesting paper on bartonella and a few case studies of individuals with unexplained neurological issues, the similarities between these cases and my own is massive. Found another case of Idiopathic Transverse Myelitis in Switzerland back in 2015 that also had Bartonella as an underlying infection. So anectdotally the evidence is there. I will be really happy to at least know what to target after all these years!



Question: Is the spinal cord ischemia the same as the transverse myelitis? (ie is one just describing what it does (ischemia) and the other is the medical name (transverse myelitis)


I also show some 'thing' in my spinal cord...mine is in the thoracic area only...and was 'diagnosed' as a syrinx.
Was told it's not causing any symptoms.

Of course I went to google...and I don't know how it differentiates from other lesions or cavities in the spinal cord.

But, I did read bartonella can cause a syrinx. And Dr. J mentions it in one of his interviews regarding lyme and co's treatment.

I'm just wondering if what you have also shows up as a syrinx...and it's just a guessing game of diagnosis.

Mine is very thin 1 mm in diameter.
I also found some information that the thin ones could possibly be a 'dilated central canal' which is benign. We are born with them and as we get older , they're supposed to close....but they don't in all cases.
Posted 6/27/2018 5:35 PM (GMT 0)
As WBF mentioned - The fluoroquinolones do come with an FDA black box warning - for: risk of tendon rupture, risk of peripheral neuropathy (that could be permanent) and also CNS effects.

But, many people with lyme/bart do take them without any events.
Posted 6/27/2018 6:44 PM (GMT 0)
Hey Girlie, thanks for the tip there, I read about the risks and will discuss with my doc.


"Question: Is the spinal cord ischemia the same as the transverse myelitis? (ie is one just describing what it does (ischemia) and the other is the medical name (transverse myelitis)"

They are different, Spinal ischemia is very rare but is effectivlely the same as cerebral ischemia. To my understanding Transverse myelitis is effectively inflammation of the spine. It can be partial (so only one area) or it can cover the entire length of the spine. There are many possible causes for it, ranging from auto-immune reactions to bacterial infections. Read an article on the link between Bart and TM smile

With regards to my thoughts on TM, I was delayed in getting to the hospital after I started to lose feeling. It also started in a very localised area and we where travelling, i figured it was a pinched nerve, so by the time i realised it was a real problem (ie, lost complete feeling in my saddle area) two days had already passed.
When I did get checked they found a lesion on the lower part of my spine which they said matches up with what they would expect based on the symptoms, they then started to hunt for the cause of the lesion and after a few days they deemed it "probably spinal ischemia" (so it was a diagnosis of exclusion i assume). Now as the prognosis for spinal ischemia is very poor they started hunting for the root cause of the spinal ischemia to avoid a recurrence. They ruled out blood pressure, heart defects, cholestorol etc etc and eventually they deemed it idiopathic (which is a term I have learnt to hate) and prescribed a ton of aspiren.
I was very lucky, as the area affected did not affect my movement and had only a minimal effect on my bladder, an event higher up on the spine could be deadly!

Now regarding the lesion, one of the potential causes would be inflammation, as is typical in MS, I did ask them at the time but they said they cannot confirm if there was any inflammation at the time of the event or not, so felt like a dead end.
Hence the interest for me in the link between Bartonella and Transverse Myelitis

My lesion is visible within the spinal chord itself (so its kind of in the middle, excuse my horrid lack of knowledge here) and is probably about the size of a 20 euro cent coin (or a globe of that circumference).
Posted 6/27/2018 7:07 PM (GMT 0)
"My lesion is visible within the spinal chord itself (so its kind of in the middle, excuse my horrid lack of knowledge here) and is probably about the size of a 20 euro cent coin (or a globe of that circumference)"

Is this lesion in your thoracic spine?

I also wouldn't rule out lyme based on the tests...you might want to consider a test from a lab that specializes in tick-borne disease testing. I'm sure the LLMD you're seeing will do that.



My 'syrinx' is only on my thoracic spine, but I also have symptoms that aren't affected by the thoracic nerves.

I'm going to ask my LLMD about how they determine it's a syrinx vs transverse myelitis vs a persistent central canal.
Posted 7/2/2018 1:35 PM (GMT 0)
Hey all, so a quick update, its been a week on ABX and I have had some surprising results.

Day 1: Was awful, my brain felt dead, literally dead, I would stare off into space randomly, could not concentrate longer then a few seconds and the sensory sensitivity went through the roof


Day 2: pretty much the same as day 1 accept that my twitching decreased by about 80 percent.


Day 3: Suddenly, I got my brain back, and I mean in a big way. Almost as if I have been staring through a dirty pane of glass for years and suddenly it was wiped clean! Concentration way up, irritability gone, emotional issues gone (dont start crying or laughing for any old reason anymore)


Day 4: massive uptick in fatigue, really intense, could barely keep my eyes open!


Day 5: Same fatigue, however I seem to have regained a bit of strength, odd as weakness was never noticed before but I can lift heavier things for longer durations.


Day 6: Massive fatigue, slept most of the weekend.


Day 7: Again massive fatigue


Today: Fatigue has subsided, brain is still clear. Twitches still happen, big rumbling types, I believe they are referred to myclonus.

Overall im a skeptic, which sux when you have something like bartonella as its so controversal, but with the improvements above I must say something has changed for the better. I think the massive fatigue was due to the years of really bad sleeping habits (which I blame on insomnia, which in turn I blame on Bartonella)

The one nasty horrible symptom that I cannot get out of my head (and seems to be amplified after my apparent cognitive recovery) is what appears to be sporadic atrophy. Sporadic in the sense that it seems to have appeared in different locations (instead of the typical ALS style of starting in one location). So my left hand, my right elbow and what appears to by my chest.
Now im wondering if it is maybe not muscles but collagen instead, anyone have experience with this in line with Bartonella? I have no clinical weakness that has been detected, so im looking for another possibility instead of the ol' "wait and see" strategy.
Posted 7/2/2018 6:07 PM (GMT 0)
Re: collagen vs muscles.

I have bartonella - tested positive PLUS was exposed to many flea bites, cat scratches and bites throughout my life.
i was healthy prior to my health crisis but had a few anomalies...that were ignored as they didn't really get in the way.


In 2013 when everything hit the fan, I lost 14 lbs very quickly...this included fat (although I wasn't heavy), muscle and collagen.

The collagen loss is very noticeable on the backs of my hands and the tops of my feet.
My muscles are much better now since treatment, but the collagen hasn't returned.
Posted 7/3/2018 6:49 AM (GMT 0)
Have you had muscle testing for ALS or anything? I have heard of cases of Lyme going right to the heart but it is rare. Hmm it's possible it's just bartonella...I would just rule out everything before believing it is Barts and treating it for that.
Posted 7/3/2018 7:08 AM (GMT 0)
Treating Bartonella should cover lyme, too. A LLMD will prescribe more than one antibiotic for bart.

But, taking something for biofilms and cyst form should be added as well.

Bartonella was positive on testing...so I would treat it.

Bartonella does cause heart issues.

www.scielo.br/scielo.php?script=sci_arttext&pid=S1413-86702007000600012



/pdfs.semanticscholar.org/0170/a7a4c1df341d49a6662d897a76ec141a4d00.pdf
Posted 7/3/2018 11:01 AM (GMT 0)
Thanks girlie/Lvg123,
yea im starting to suspect collagen loss as its a slow process and after a few EMG's there is still no sign of weakness, also the sporadic distribution of the atrophy seems to have no pattern. Added to that is the fact that it does not change for months on end. Guess I will have to wait and see. The ABX are a rollercoaster, today I am full of twitches and have a resurgence of symptoms in general, could be a herx as i read there are reports of these reactions with bartonella, I guess this Bacteria wont go quietly into the night.
Posted 7/3/2018 3:19 PM (GMT 0)

EdTheRed said...
With regards to my thoughts on TM, I was delayed in getting to the hospital after I started to lose feeling. It also started in a very localised area and we where travelling, i figured it was a pinched nerve, so by the time i realised it was a real problem (ie, lost complete feeling in my saddle area) two days had already passed.
When I did get checked they found a lesion on the lower part of my spine which they said matches up with what they would expect based on the symptoms, they then started to hunt for the cause of the lesion and after a few days they deemed it "probably spinal ischemia" (so it was a diagnosis of exclusion i assume). Now as the prognosis for spinal ischemia is very poor they started hunting for the root cause of the spinal ischemia to avoid a recurrence. They ruled out blood pressure, heart defects, cholestorol etc etc and eventually they deemed it idiopathic (which is a term I have learnt to hate) and prescribed a ton of aspiren.


I also had a suspected TM, it didn't show up on MRI, but I lost sensation in my bowel and bladder and have a ring of neuropathic pain around my lower abdomen. It happened while taking low dose naltrexone - I'd recommend avoiding that drug.
Posted 7/3/2018 7:19 PM (GMT 0)
Did they do an MRI? Perhaps find any lesions?
Do you have Bartonella? (apologies for all the questions!)
I had slight issues with the bladder, but they resolved relatively quickly. My bowel was more of a hassle, had to take something to help the movement, but also resolved pretty fast.
I assume with me that the inflammation had past by the time I was in hospital, so is a tricky one as I may never be able to confirm it. So im now stuck in the middle of conflicting opinions between my GP (who, due to his knowledge of my history, is claiming Bart) and the neurology folk who insist its benign and keep wanting to send me on more tests, give me more pain meds and hint at possible anxiety when they cant answer anything. (Bit of a rant! excuse me! smile )
Thanks for the tip on naltrexone, will make sure I dodge that one!
Posted 7/3/2018 7:48 PM (GMT 0)

acarined said...

EdTheRed said...
With regards to my thoughts on TM, I was delayed in getting to the hospital after I started to lose feeling. It also started in a very localised area and we where travelling, i figured it was a pinched nerve, so by the time i realised it was a real problem (ie, lost complete feeling in my saddle area) two days had already passed.
When I did get checked they found a lesion on the lower part of my spine which they said matches up with what they would expect based on the symptoms, they then started to hunt for the cause of the lesion and after a few days they deemed it "probably spinal ischemia" (so it was a diagnosis of exclusion i assume). Now as the prognosis for spinal ischemia is very poor they started hunting for the root cause of the spinal ischemia to avoid a recurrence. They ruled out blood pressure, heart defects, cholestorol etc etc and eventually they deemed it idiopathic (which is a term I have learnt to hate) and prescribed a ton of aspiren.


I also had a suspected TM, it didn't show up on MRI, but I lost sensation in my bowel and bladder and have a ring of neuropathic pain around my lower abdomen. It happened while taking low dose naltrexone - I'd recommend avoiding that drug.

Get an mri of the cervical, thoracic and lumbar spine to check
Posted 7/3/2018 7:52 PM (GMT 0)
I don’t know how the LDN would be a problem and cause a worsening unless it was a herx reaction as it does affect our immune system somewhat - supposed to modulate it


When I took the ldn it didn’t help me and it did worsen my pain during the night... that may have subsided if I had stuck it out longer - perhaps a herx
Posted 7/4/2018 12:59 AM (GMT 0)

EdTheRed said...
Did they do an MRI? Perhaps find any lesions?
Do you have Bartonella? (apologies for all the questions!)
I had slight issues with the bladder, but they resolved relatively quickly. My bowel was more of a hassle, had to take something to help the movement, but also resolved pretty fast.
I assume with me that the inflammation had past by the time I was in hospital, so is a tricky one as I may never be able to confirm it. So im now stuck in the middle of conflicting opinions between my GP (who, due to his knowledge of my history, is claiming Bart) and the neurology folk who insist its benign and keep wanting to send me on more tests, give me more pain meds and hint at possible anxiety when they cant answer anything. (Bit of a rant! excuse me! smile )
Thanks for the tip on naltrexone, will make sure I dodge that one!


I do have bart, diagnosed by symptoms and Herxheimer reactions. My neurologist knew my Lyme history and wanted nothing to do with it, they offered me steroids but didn't attempt a diagnosis.
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