My LLMD did the Fry blood smear, and it came back positive, or suggestive of Haemobartonella and Protozoa FJ1953.
The purpose of the smear was to determine if I have bartonella. She now wants to add Rifampin to treat bartonella.
From everything I've read, it appears this is not really bartonella, but a BLO, or a mycoplasma-like bug, and not Bart. Am I right? What is the treatment?
I understand the treatment for the FL1953 is Plaquenil and Biaxin and a low fat diet. I am currently on high fat for babesia and a slew of drugs including;, Mepron, Zith, Tindamax, Ceftin, Lariam and IV Clindamycin one week/month.
I have responded to every babesia/malaria abx so far, and have been treating babesia for sixteen months. This FL1953 is showing up now, after all this time. Does babesia abx hit the FL1953, or do I need to switch meds?
I'm going to call the lab myself on Monday, and see if I can get any information. If not, will have my doctor call on my behalf.
1) Is Rifampin susceptible to haemobartonella 2) Are Mepron/Zith/Tindamax susceptible to FL1953
I've gotten 75% better treating so far, so this is a bummer, when you thought you were closer to "r".
I'm not sure how to proceed...
[ 04-12-2011, 06:14 PM: Message edited by: nspiker ]
Posted by Haley (Member # 22008) on :
HI Nspiker,
I also had a smear in the same office you did, I'm sure. I was also told that it was bart and I don't think it is. Please let me know what you find out.
I believe that both the FL1953 and the Haemobartonella are protozoan infections. If so, they would both respond to Babesia treatment.
Please let me know what you find out.
Posted by seibertneurolyme (Member # 6416) on :
I think the haemobartonella responds to meds used for bartonella -- factive and rifampin was the best combo for hubby.
His bloodslides were positive for the haemobartonella back in 2007 before Dr F had identified the protozoa. He had many bacteria. Was also seen by Clongen lab. With treatment the number of bacteria went from many or numerous to several to none -- his last slide from Clongen was clean in December 2010. He treated for basically 3 years for the bartonella or BLO or mycoplasma or whatever it is.
A 2nd reason I think the bacteria is actually gone or greatly reduced is because hubby is now running fevers with his babs treatment and his WBC is not only normal (was borderline low for a couple of years before factive) but actually fluctuates. His immune system does not seem to be supressed as it was.
nspiker -- Maybe the meds you are taking for babs are bacteriostatic and not bacteriocidal. We did not realize this was what was happening to hubby until recently. We actually thought his babesia was gone -- but a high titer for WA1 (never tested in the first 10 years he was sick) in December indicated that babs might still be there. His herxes have definitely confirmed the presence of some form of babs or other blood borne parasite.
I have pretty much come to the conclusion that if babesia treatment just makes you feel better then it is probably just bacteriostatic and not bacterioidal. Of course it could have to do with the bacterial load. If you had a mild infection that was treated quickly then you might not have the horrible herxes.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posted by karenl (Member # 17753) on :
The hemobartonella is not bartonella but a mycoplasma, please read old posts for this discussion.
Posted by nspiker (Member # 22824) on :
Haley...yep, same doc, same result. I can't believe they don't know the facts .
Bea, how do you ensure the meds are bactericidal? My only thought is dose, and I'm on the maximum dosages for all these drugs.
karenl, I've read past posts and that's how I came to this understanding. If it's a mycoplasma, then I'm assuming Minocycline and Clindamycin, (which I am already on), would take care of it - and it hasn't. What is your understand of the treatment protocol?
Posted by 5vforest (Member # 29365) on :
I hate to say it... but isn't fry finding "hemobartonella" in a staggering number of patients? How reliable is this result?
Posted by seibertneurolyme (Member # 6416) on :
5vforest,
If you read the old LymeMD blog it shows that Clongen lab also found cocobacilli in a very high percentage of patients. Regardless of what the actual bacteria is -- bartonella or mycoplasma or whatever -- it is not normal to have bacteria floating around in your bloodstream.
In the past many people recovered and left LymeNet when rifampin was added to the treatment protocols. People who had only treated with levaquin or had never been treated for BLO got their life back.
For hubby the primary symptoms that resolved with extensive treatment and the disappearance of his coccobacilli were his seizure-like episodes.
nspiker -- I think that sometimes it is the particular combo of meds that makes the difference. Some combos are more effective than the same meds taken individually.
I think I read on the Clongen website or maybe it was the test requisition form from hubby's LLMD consultant that that lab can now do some testing for suceptibility to antibiotics. If any of hubby's new babesia testing comes back positive I will probably check into this possibility as he has tried so many meds already for this infection.
For some meds you can test the blood level for therapeutic purposes. While hubby was in the hospital recently they tested his bloodlevels for vancomycin. He has had that done for doxy in the past. Not sure which meds that is available for but might be worth checking into.
Bea Seibert
Posted by nspiker (Member # 22824) on :
Bea, so Rifampin is the treatment for BLO? If so, that's great news.
Anyone else with experience with this bart-like-mycoplasma organism? What treatment worked for you?
Posted by seibertneurolyme (Member # 6416) on :
nspiker,
Hubby treated with levaquin, factive and rifampin in various doses -- as monotherapy and in combos. For him none of the meds individually did the trick -- the combo of factive plus rifampin was what finally worked. He also tried several herbal things including HH2 from Zhang and cryptolepis.
I think it is a trial and error type of treatment because I think there are several different strains of bacteria which may respond to different combos.
Bea Seibert
Posted by nspiker (Member # 22824) on :
Anyone else want to weigh in? Thanks Bea...
Posted by richedie (Member # 14689) on :
I am skeptical about this protozoan.
I have friends who tested positive for both the FL1953 and the Haemobartonella and both are fine now after standard Lyme, Bart and Babs treatment, In fact they ate a hig fat diet and no plaquenil.
I was doing the plaquenil and biaxin but I am sick of puting abx in my body so I stopped taking Biaxin. I am not sure why you can;t take the plaquenil without the biaxin. can someone explain????
I am still doing low fat...and will do herbs.
Posted by richedie (Member # 14689) on :
So does anyone know if it is OK to take the plaquenil without biaxin?
Posted by nspiker (Member # 22824) on :
I spoke with FRY lab and confirmed; haemobartonella is not bartonella. Also, the biofilm that surrounds the mycoplasma-like haemobartonella is the fry protozoa called FL1953.
Interestingly, they found NO spirochetes and NO babesia in my blood smear.
I have been treating with all kinds of anti malaria-protozoa drugs now for a year and a half, as well as minocin for mycoplasma. Thankfully, my results show rare or few of both of these organisms, which to me indicates we have made progress. Now we must find what it takes to completely eradicate what is left. Hopefully, my doctor will talk with Dr. F. and come up with a plan.
The lab told me that they believe lyme is over-diagnosed and that there are other organisms, such as these, that are making us sick. Since it appears that Dr. F. likes plaquenil, have you ever wondered why one of the most widely-used autoimmune drugs is plaquenil, an antimalarial? Maybe those that respond to plaquenil for inflammation really have a protozoa like FL1953 they're treating.
I always questioned my lyme diagnosis, and never had a tick bite or rash....I am however, very grateful for LLMD's because they are the only ones who risk their license to get us better!
Posted by Myco (Member # 9536) on :
Is it worth it to go to AZ to see Dr F? I am a short flight away and am curious whether lyme patients feel his tests and treatment are effective???
I am feeling about 80% after lyme and bart treatment and need to get all the way there!
Thanks.
Posted by Haley (Member # 22008) on :
Please let me know what the treatment plan is. I know I have the haembartonella but I don't remember seeing the FL1953. I'll check my results again.
Posted by nspiker (Member # 22824) on :
Haley, that was confusing to me too. When I read the notes at the bottom of the picture it said rare 1-4 organisms cocobaccilli adherent to erythrocytes. This is suggestive of hermbartonella or hemoplasma, Few biofilm community -like structures and/or organisms were observed.
Then reading the Results attachment from Dr. F., it states a recommendation to confirm (1)FL1953 Protozoan and (2 Epierythrozoan/Hemobartonella.
I asked the lab where the discovery of the protozoa was documented, since it wasn't in the notes under the picture, and she said that the biofilm (purpilish-pink)was the protozoan. It'd be easy to miss unless you have the results attachment, thinking it was just plain 'ol biofilm, because there's no discussion of a protozoa in the notes.
Posted by nspiker (Member # 22824) on :
Haley, that was confusing to me too. When I read the notes at the bottom of the picture it said rare 1-4 organisms cocobaccilli adherent to erythrocytes. This is suggestive of hermbartonella or hemoplasma. Few biofilm community -like structures and/or organisms were observed.
Then reading the Results attachment from Dr. F., it states a recommendation to confirm (1)FL1953 Protozoan and (2 Epierythrozoan/Hemobartonella.
I asked the lab where the discovery of the protozoa was documented, since it wasn't in the notes under the picture, and she said that the biofilm (purpilish-pink)was the protozoan. It'd be easy to miss unless you have the results attachment, thinking it was just plain 'ol biofilm, because there's no discussion of a protozoa in the notes.
I'll definitely get the info to you when/if they talk to Dr. F.
Posted by richedie (Member # 14689) on :
Not sure I buy into this protozoan thing any more. I mean why is no one else reporting this? There is a lot of research on the table in coming years for tick bourne disease, why is nothng being put toward this protozoan? I know two people that had the same results from F. Labs as me and neither of those people were treated with plaquenil and biaxin. They are both well now.
Posted by nspiker (Member # 22824) on :
richedie, I don't know if plaquenil/biaxin is the only way to treat this protozoa. In fact, when I spoke to the lab, they said Dr. F. taylors treatment to each individual. I don't think treatment is as cut and dry as a one-medication-combo-fits-all. Since so many have recovered from babesia, I'm sure it is a similar path.
I don't know your history of treatment, but it appears you've been on lyme, bart and babesia protocols. What did you respond to? I can tell you for sure that I believe completely in this protozoa, because I have reacted to EVERY protozoa/malaria drug. I knew in my gut I had the Fry bug before I was even tested. I was actually excited to get it confirmed (even though my doctor thought she was testing for bartonella)!
Posted by richedie (Member # 14689) on :
nspiker, what do you mean when you say respond? If you mean did I feel better or worse on any of these meds? Then the answer is no to all medications I have taken. I never felt better or worse on anything.
Posted by nspiker (Member # 22824) on :
richedie, you have never improved on any medication? I'd be bummed too! I'm 75% better then when we started treating a year and a half ago.
You have never herxed or responded positively to any medication? It looks like your doctor has switched things up a lot. I have basically taken the same medication the whole time, added a few on, but never took any away.
I would be fed up too, if I hadn't seen any improvement. Something else needs to be addressed. Are you detoxing enough? It might be time to change LLMD's, and what do they say about your lack of improvement?
Posted by richedie (Member # 14689) on :
I did change LLMDs after 3 years and he says I should stop taking antibitoics since they are not working. Maybe herbs?
Posted by hadlyme (Member # 6364) on :
Nspiker... I am getting better and I see Dr. F.
I use plaquenil by itself.. I use zith... malerone... we've done what ever I can stomach and what is working. I've done combo's and now am in a remission type of treatment. I feel really pretty good. Energy is back... I still have night sweats that come and go, and back pain that I get every few years... but still will be on abx as it's not time to go off everything completely.
I do a low fat diet, but always have. I do not eat vegan only... I do eat lean meat. Doc ok with that.
This FL1953 is treated like babs or bart. Same type of treatment. Think of all of this as a bunch of Co Infections, and this is one of them.
We bunch everything under "lyme" like we do when we talk about "kleenex"... all tissue is called kleenex.... all vector borne diseases we're calling lyme. When reading in these forums, we all talk about the co infections being the bad boys that we can't get rid of... hmm..?? we don't talk lyme that we can't get rid of... it's all babs this, bart that.... SO... why can't a so called co infection be strong enough that IT"S the bugger we are all sick from.
No one else is finding this... as I don't see any other drs out there that are microbiologists that have their own labs. I see a bunch of drs that are telling us what to do, but have they ever ran tests to come up with their info?
I never had a tick bite either. So what Dr. F says makes a BUNCH of sense to me. DNA is what plays a big part in how we fight off a bug bite. Obviously my family has bad DNA... my dad died of ALS (vector borne disease that started it?) and my aunt died of ALS. Now I have whatever I have...
Don't think of you having a different disease... you just have a name of another type of co infection that really is the main infection!
I live just a few miles from this lab/office... if anyone needs info about it.. pm me. I've been going for 2 yrs now... and I reaaaallly like him.. compared to a top llmd in NY that I saw my first treatment.
I've always said.. we have to find what works for our body AND our minds... What I hear from this dr. I believe as it makes sense to me. AND... I'm getting better. It takes time.... and one step forward might mean 1/2 step back sometimes, but in the long run.... it's worth the race.
Posted by nspiker (Member # 22824) on :
Hadlyme.
I've read some of your older posts, and if you like Dr. F. better than that doctor in NY, then that is saying something. Dr. F. is not my doctor, but I would not hesitate to see him if needed.
I have a couple of questions, since you are at the souce of the information. You mentioned that these bugs are treated with babesia and bartonella drugs. That confuses me since this is not bartonella, but a mycoplama-like infection. What bartonella drugs respond to these bugs? My doctor has given me a script for rifampim because she thought she was treating bart.
I'm confused about the treatment. I know I have mycoplasma hominis, was PCR tested, and have been on minocycline and IV clindamycin for a long time. If the hemobartonella is like a mycoplasma, then does clindy and mino effect the hemobartonella too?
I'm not as confused about the FL1953 because I've always responded to anti-malarial drugs.
What drugs are responsive to the hemobartonella, and what have you tried, or heard to be effective? I've heard plaquenil/biaxin, but these are not bartonella drugs.
Posted by richedie (Member # 14689) on :
Hadlyme, you said "This FL1953 is treated like babs or bart. Same type of treatment. Think of all of this as a bunch of Co Infections, and this is one of them." I don't understand....I know I treated Babs with mepron and extra fats in diet!
I decided I might skip all doctors and start to self treat with herbs. Doctors have done nothing for me thus far.
Posted by 5vforest (Member # 29365) on :
Is plaquenil an antibiotic that requires one to take probiotics while taking it?
Posted by seibertneurolyme (Member # 6416) on :
5vforest,
Hubby has consulted with the doc who used to write that blog. While he might not have changed his mind about the F lab, he has defintiely changed his mind about bart.
He does not order Clongen blood slides for all patients routinely anymore -- think they almost always came back with unidentified coccobacilli similar to what the F lab finds. Think the doc just treats most patients for bart based on clinical symptoms.
Hubby had a discussion with Dr K at Clongen today. He actually would probably agree with the F lab regarding the post you mentioned. Something different shows up in almost every blood slide hubby has done with Clongen. Dr K believes that if you burst the red blood cells during treatment other hidden infections can be released or chased out of hiding.
Bea Seibert
Posted by hadlyme (Member # 6364) on :
Plaquenil is not like zith and doxy...it's more for babs/fry bug. Its a malaria med.
I was first on Biaxin and Plaq.. but can't stomach Biaxin. I was in treatment years ago, and did great on Zith. So we switched to zith and malerone. I've been on that for over a year.
Now because of my work changing insurance companies, and the new insurance won't cover malerone, I'm back to doxy and plaq.. but again, can't stomach the doxy.
So.... I'm doing zith and plaq... but not at the same time. I'm feeling really pretty good.. almost two years of this last treatment, so I'm sort of doing a week of one and then a week of the other. Doc said whatever I'm doing, I can keep it up for now. I change it up and pulse and it's working pretty good.
I always have my blood ck'd every month... I always show that I'm anemic, but not low on iron. So it's a bug induced anemia.
When I said it's treated the same, it is. BUT.. remember, we all react to drugs differently. He wanted to try mino with me too.. but I knew I'd lose my intestines if I tried that one.
I've always known I've been dealing with a parasite/protozoan in my red blood cells. Back in 1999 my GP found (in my whats wrong with me 6 months of testing) that I couldn't keep B12 in my red blood cells... He kept saying, 'what's eating your B12 in your cells?'... So for me this idea of babs or FL1953 makes sense that I carry a vector borne disease in my red blood cells.
Malaria meds have always made me feel better.
Malaria is the number one killer in the world. It's carried by a bug. SO... why can't there be other bug diseases that we haven't even touched the surface in finding.....
I'm rambling again....sorry it got so long again.
Posted by richedie (Member # 14689) on :
I decided to come off all meds even if I am not better. I am tired of poisoning my body with these meds. Been doing it for 3 years with little improvement. I can't let this disease and these medications rule my life. I am just going to live my life and probably find some form of good pain management for my symptoms. If I can afford it I will try herbs.
I think I am done with doctors as well, they have done nothing for me in 3 years, so why spend the money.
Posted by Beagle (Member # 29698) on :
I recently read that plaquenil is a slight immune suppresant? It that is true maybe that's why they say not to take Plaquenil alone without added antibiotics like Biaxin or Zith?
I don't know for sure, as I am just starting Plaquenil today but am a bit concerned about the immune suppressant part of it. ??
Beagle
Posted by nspiker (Member # 22824) on :
Hadlyme, Thanks for all the rambling...it helps us to sort things out.
One last question. I understand that the protozoa 1953 responds to anti-malarials. What I don't understand is that I don't see you or anyone taking bart medication like Rifampin.
Does Dr. F. prescribe Rifampin?
Posted by nspiker (Member # 22824) on :
Up for hadlyme...
Posted by hadlyme (Member # 6364) on :
Hi... No, I've never heard of him prescribing Rifampin. He's never talked to me about it at least... and never have heard anyone else on it.
I know he does ck things out under his microscope... maybe he's not seeing positive things with that drug? I don't have an answer for that.. sorry...
Posted by nspiker (Member # 22824) on :
Thanks hadlyme, that's exactly what I needed to know.
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