Heading to Ida Grove this weekend –

[Maz]

@cavalier wrote:

Maz I printed out the 2 links for my doc. i found the flea association of interest – I have 9 dogs & we have had a couple of times over the past 7 yr’s of bad flea seasons here – so yes it is VERY possible ! Will see if my N.P. will draw blood for this Galaxy to run – if they can get into a vein that is.
Thanks!
Jill

Jill, so hoping that this bartonella association may prove to be a helpful lead for you – it just somehow makes sense in light of being an animal lover and the symptoms you’ve mentioned. My only fellow patient suggestion would be not to rely upon testing only as there are many strains of bartonella and they may only be able to test for certain species (see bartonella/eye manifestations link above for ones most commonly associated with uveitis). Personally, while I might get testing run just to see what comes up, I wouldn’t rely on testing and would forge ahead with trying to get rifampin added to my abx protocol (it’s complementary with mino)…Lyme docs do this all the time, not relying on tests and using therapeutic probing, as they believe strongly it’s safer to treat than to leave devastating infections untreated.

This is just me, but the thing I can’t get out of my head is why Wirostko would have used rifampin to treat “mycoplasma-like organisms (MLOs), when it’s not commonly used for mycos? Was he looking at what he thought were mycos, but really bartonella? Was this why he called them “myco-like?” Either way, it really doesn’t matter, as both seem to respond to rifampin.

Jill, these diseases are rough and even rougher still when eyes are so raw and painful, so my heart goes out to you and just hoping that something like this may be your lucky ticket. Seems treatment with rifampin may take at least a good 4 months or so to begin making a difference, so it might take a leap of faith to trial, but would be wonderful if this works for you. I’ve been on rifampin for several months and the worst side-effects were tangerine-orange colored urine and stool (tears and other bodily fluids may be similarly stained this color)….some folk have a good herx with it, though. If you can get off the steroid drops, this would be great.

[cavalier]

Maz – i have not used the steroid drops like my doc wants me too – I use them like 2 to 3 times a day – b/c using them more often like she told me too made no difference actually they may have gotten more aggravated – so i am not telling her this but have upped the anti inflamm’s like bromelain & tumeric & now using nutramedix A couple of theirs – this last addition which is not only for lyme but for any bacterias has seemed to help while staying on the mino of course. So I think there is something to this am hoping i can get the Rifampin from my doc tomm. I have that printed out for her. I very much appreciate it – as certainly I have the exposure. Some terrible bacterias for sure & yes I agree hard to say in what he noted for the myco like looking – that Galaxy lab seems to be the best in finding Bart. infection in NC.
Still sensitive but not quite as painful – I mean you almost wanted to remove your eyes it hurt constantly & alot.
Best – Jill

[Maz]

Jill, good luck at the doc’s tomorrow…I hope the articles help to discuss this possibility with your doc and that she is open to helping you for a trial of rifampin. Only you can really figure this out ultimately – what feels right to you, but anything is worth a try when suffering like this. I can only imagine how your poor eyes must have been feeling…you must be one very strong, resilient lady, as this would be enough to send anyone mad and I really don’t hear you complaining much. I recall when my Mum developed Grave’s disease with ophthalmic involvement and her eyes felt like she had grains of sand in them, they began bulging and were constantly tearing. Poor thing had to make it through my wedding with this going on…people thought she was upset about my wedding! We could laugh about it afterward when it was discovered what was going on for her and she got straightened out with the right thyroid meds, but miserable while she was suffering.

Fingers and toes are duly crossed and let’s hope that in due time we can look back and smile that it’s well behind you.

[cavalier]

The ole saying I tell myself it is what it is – it is a royal pain. I am upping Vit A but being careful as to the amt’s & doing what I can. I read that Vit A and sea salt are both natural antibacterials.
I saw the Nurse practioner – she feels the mincoycline is the same class as Doxy & the stronger Rif. (dont have the spelling in front of me now) so is reluctant to take me off the mino & does not want to add them in on top. I had her look at my nose it is a bit congested not bad today – so nasonex for that is all. She is working on ordering me the Clindy IV’s for next Monday due to this weekend being Easter Sunday.
I also read of a device called SCENAR – it is supposed to raise the peptide levels in the body by this device can take from one to 6 treatments or a dozen depending on how long the issue has been going on. Cost is somewhere from 35- 40 a session for a 1/2 hr. depending. There is a MD in Memphis using this – http://www.scenarinfo.com I wrote to her office to inquire about this.
The technology for the SCENAR was developed by a team of Russian doctors and
scientists at Sochi University led by Alexander Karasev in the late 1970s. The team sought a
method of treatment that was energy-efficient, portable, non-invasive, and circumvented the space
flight problem of toxic waste storage. The solution they devised was a repeatable therapeutic
treatment using electrical signals to stimulate the immune system, the body

[enzed]

Maz wrote:

Further possible connections to bartonella is that Dr. Alan Cantwell, a dermatologist, ran biopsies on the skin of scleroderma patients and discovered rod-like, gram negative, acid-fast organisms that morphed into different shapes (pleomorphisms). Well, there are lots of rod-like, gram negative bacteria, but bartonella just happens to fit this description, too.

https://www.roadback.org/index.cfm?fuseaction=education.display&display_id=102

“Fig. 1: A clump of acid-fast, rod-shaped bacteria in the dermis portion of the skin of scleroderma. Fite-Faraco (acid-fast) stain, magnified 1000 times. The first report of “acid-fast” bacteria (similar to the kind of microbes that cause tuberculosis) in scleroderma was published by Virginia Wuerthele-Caspe Livingston, M.D. in 1947. These unusual microbes were discovered in skin scrapings from a woman with ulcerations of the fingers. In later collaboration with pathologists, dermatologists, and microbiologists, she further characterized the peculiar and multi-shaped (pleomorphic) bacteria she consistently isolated from scleroderma cases.”

This stuff can be a kind of connect-a-dot and correlation doesn’t always imply causation in scientific research, but it just seems odd to me that bartonella has been tied strongly to uveitis, sarcoidosis and scleroderma. Just wondering if this is worth further researching? What are your thoughts, Jill? You got tested for Lyme and babesiosis…but bartonellosis is a prevalent tickborne disease, too, and some researchers believe it may actually be a major infectious contender in inflammatory rheumatic diseases and, of note, this following article speaks to the neurological component of bartonella, too:

http://seattletimes.nwsource.com/html/health/2012002781_bacteria01.html

Maz, this is most interesting to me. When I was a young I worked as a nurse aid at the Randwick Chest Hospital in Sydney. A regular task was to wash the blood splattered walls every morning after the TB patients had coughed on them during the night. Our only precautions included wearing gowns and masks, and we were forbidden from eating food in the wards. Now I am wondering if that’s where i contracted scleroderma?

[cavalier]

just seeing the note of the poster mentioning cleaning up blood for patients.

my thought was while not TB more times than i care to remember I have had a dog in the last 12 yr’s get a bloody explosive episode that was in my house that needed immediate clean up – while I would love to say i walk around with gloves in my pocket like a vet does i do not – & those times this has happened it was sudden & not expected. I of course being a Mom with 2 sons here who i would not want to step in this I hurried up & cleaned it up with my hands washing them afterwards & then taking the dog into the vet type of thing – the 5 or 6 times in 12 yr’s this has happened keep in mind the dog themselves was sick then – either bacterial or viral – usually flagyl was given & cleared it up which meant it was def. Bacterial & NOT viral! I didn’t exactly stick my hands into this willingly but at times they got a little on me if i had a small cut or something it’s possible is all i am saying. Along with the fact that the 1st year we were here was the worst for Fleas – due to us clearing out me mostly the wooded native lot here which are vectors for bartonella as well as possibly other TBD’s.

This recent post brings back many memories of these recent past few months in my seeing for sure during HBOT and using Doxy & Flagyl later on Rifampin but during the Doxy I saw a rod like very rounded but spiral looking purplish red form that I knew was not supposed to be a part of me just under the surface of my skin in the belly area – where i happen to have most of my excess at – I showed this to Dian at the HBOT center who works with other Lyme patients & all sorts of diseases as she typically ran the unit – it was seen by me when i just finished a session and was getting out of their supplied surgery scrubs to change to my street clothes i had her look at this – i was so sick at this time & so overwhelmed in trying to keep up with continuining changes i wish now I had taken a picture – I was just not thinking of evdience but i was more concerned with what is this?
My doc who deals with Lyme feels i could well have Bartonella & from what i have read Bart. is more common than Lyme is which is different than what they thought just yr’s ago. Or this could be the SD rod like not sure which it is but def. I feel in my gut this appearance told me one key thing there is something there bacterial in nature – which is why I was also confused & blown away that Dr S’s test up in Ia. never showed anything on the mycoplasma testing he never ran a CPn wish he had but it maybe that the bartonella is not the same to show on his testing or it is so good about evading the blood – as one of the issues i read was that if one is on AP the FIRST thing that clears IS the blood & so any blood testing will be negative – Dr S. didn’t want me off the AP at all ahead of testing so alot of questions but also my body has given me evidence too.

I wish i had HBOT closer as the Doxy was only changed at the very end of the HBOT what HBOT does do is get the AP deeper into the tissues and it was in the last week or so of HBOT that the rod like form showed thru – coupling the right AP along with HBOT sure seemed to be a difference and during HBOT use it does help in keeping symptoms down not always but mostly but 3 hrs of driving daily was alot coupled with 90 mins to 2 hrs for treatment.

I know in the upteen tests I have had I am classic for SD – i do feel this is why the Peptides didn’t work for me well nor very lasting was my issue was not caused by toxins although I have some I am sure – years of chorella & things to detox have probably helped my issue from my own body is def. from a bacteria. And I know i have Lyme so it stands to reason my doc & i both feel i have Bart. too – i have not as of yet paid for a test from Galaxy labs I prob. should but money just keeps flying out the door faster than it comes in. My main goal is to treat for Bart. along with Lyme & SD in trying to balance all of this & see what progress i can make and at some point maybe if things are stalled then continue on to get more data.

Best Jill

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