You may be right bout the motives of some docs in ordering the tests. To me that is completely beside the point.
It seems that there is a very serious infection that makes a lot of people very sick. Either it has been reported to the CDC in which case there is a hope tat an ID will be made and people can get better. Or it hasnt.If so, it is incomprehensible and irresponsible.
Gale
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I was wondering if there is a brave, energetic soul out there willing to summarize this topic, and/or the latest on the BLO...
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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As a footnote, one of the reasons I asked this question is that I continue to get mixed messages on what may possibly "feed" the BLO and bartonella; some articles have differentiated between "feeding" cultures of the bugs (one must look hard); e.g. see below. This stuff is tough to figure out (duhhh....)
My tentative assumption is that arginine feeds certain BLO bugs; but actually may "hurt" others. ____________________________________
: Proc Natl Acad Sci U S A. 2008 Jul 8;105(27):9427-32. Epub 2008 Jun 30.
Detrimental effects of Bartonella henselae are counteracted by L-arginine and nitric oxide in human endothelial progenitor cells.
Salvatore P, Casamassimi A, Sommese L, Fiorito C, Ciccodicola A, Rossiello R, Avallone B, Grimaldi V, Costa V, Rienzo M, Colicchio R, Williams-Ignarro S, Pagliarulo C, Prudente ME, Abbondanza C, Lamberti F, Baroni A, Buommino E, Farzati B, Tufano MA, Ignarro LJ, Napoli C. Department of Cellular and Molecular Biology and Pathology Luigi Califano, School of Biotechnological Sciences, Federico II University of Naples, Naples 80131, Italy.
The recruitment of circulating endothelial progenitor cells (EPCs) might have a beneficial effect on the clinical course of several diseases. Endothelial damage and detachment of endothelial cells are known to occur in infection, tissue ischemia, and sepsis.
These detrimental effects in EPCs are unknown. Here we elucidated whether human EPCs internalize Bartonella henselae constituting a circulating niche of the pathogen. B. henselae invades EPCs as shown by gentamicin protection assays and transmission electron microscopy (TEM). Dil-Ac-LDL/lectin double immunostaining and fluorescence-activated cell sorting (FACS) analysis of EPCs revealed EPC bioactivity after infection with B. henselae. Nitric oxide (NO) and its precursor l-arginine (l-arg) exert a plethora of beneficial effects on vascular function and modulation of immune response.
Therefore, we tested also the hypothesis that l-arg (1-30 mM) would affect the infection of B. henselae or tumor necrosis factor (TNF) in EPCs. Our data provide evidence that l-arg counteracts detrimental effects induced by TNF or Bartonella infections via NO (confirmed by DETA-NO and L-NMMA experiments) and by modulation of p38 kinase phosphorylation.
Microarray analysis indicated several genes involved in immune response were differentially expressed in Bartonella-infected EPCs, whereas these genes returned in steady state when cells were exposed to sustained doses of l-arg. This mechanism may have broad therapeutic applications in tissue ischemia, angiogenesis, immune response, and sepsis.
PMID: 18595894 [PubMed - indexed for MEDLINE]
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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kelmo
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Daughter starting treatment for toxoplasmosis this weekend. Will let you know.
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Is it possible to post something about the diagnostics (was here a pcr test)?-would be really helpful. Gale
[ 06-17-2009, 05:29 AM: Message edited by: galehane ]
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kelmo
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He took blood for the pcr but said there may not be much showing since she is in active treatment.
He is going clinical based on the stubborn band 41, her symptoms, reaction to drugs like Ivermectin, etc.
After three plus years, he asked if we were willing to try it. My daughter said yes, no hesitation.
We have a cat, it was a stray when we found him. We never owned a cat before him. He is now 14. I believe that toxoplasmosis was just opportunistic with all the other organisms.
But, we are testing for it, just the same.
Gale...he's doing a presentation on the 23rd to a Lyme Autism conference. He will be presenting loads and loads of facts and pictures.
He will be presenting it in the way a scientist would. "Here's the facts, research, and results" Then they can come to their own conclusions.
He is not there to support the work of the other speakers, but only to present his findings. Especially the two cases of autism he has been treating and the dramatic results he's had.
I cannot attend even though it is local. But, I believe that Scott Forsgren will be attending. I hope he gives a report on what is presented.
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Kelmo thanks- hope forsgren can post something. Hope you have a chance with the pcr anyway, as the meds dont seem to be that effective? But again it might not always be in the blood? But positive to know that there is a pcr- athough I presume it is not that specific yet? (has pinpoined the bug exactly??), but obviously something similar?? I suppose it is Toxo proper as many pts are sero-negative for "oldfashioned Toxo"??
Gale
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springshowers
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The Day that Dr. F does his presentation is a proffessional day only. The other days open for public registration. Not sure if there are any exceptions.?
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springshowers
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Here is the schedule for anyone interested in going. I may be going to some of the events.
Hubby spoke to the F lab again this morning regarding his recent bloodslide. His doc has the results which we do not know yet. Our LLMD appointment is not until July 1.
Anyway, I think Kelmo is saying that her daughter is having a PCR test from F lab for toxoplasmosis. According to the lab the only tests available to the public which are not listed on the current website/order form are:
PCR test for 3 babesia species (microti, gibsoni, and canis). A positive test would be sent out to another lab to confirm the actual species by 16S DNA sequencing.
And PCR test for toxoplasmosis.
According to the lab the toxo test may show a positive which could be a cross-reaction with the new protozoa.
Bea Seibert
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Ok I didn't get to read all these replies yet but have a question!
Both my boys got the Fry lab test results of "hemobartonella/mycoplasma" which I assume you are saying could be "Toxoplasmosis"?
Well then they both tested at Lab Corp highly positive for active Mycoplasma. Sooo my question is could their Fry Lab really be showing Mycoplasma and not this Toxoplasmosis?
Any thoughts?? Thanks!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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Just for clarification.i was under the impression that the pts with Dr F could have a spcial PCR.If I understand correctly that it is a pcr for Toxo that might be cross-reactive to our x-bug?Thank you. BTW How is Hubby doing on the meds? Gale
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kelmo
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The issue is money. He has two organisms he needs mapped. He has two microbiologists working with him. As my daughter was getting her blood drawn, I saw one of the men comparing slide images on two different computer monitors.
I didn't feel I could go in and look over his shoulder.
He was thrilled that they actually saw a spirochete, but it wasn't borrelia, it was leptospira. That might show that we are carrying things in our bodies we hadn't thought of.
He is using the heck out of his PCR, Gale.
Look, I don't know if my daughter will benefit from this new treatment. But, we are willing to try it so the rest of you can benefit.
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First rule of treatment is to treat what you know. You have a confirming test that your sons have mycoplasma. Treat that and then if issues remain be open minded to other possible infections.
The F lab is investigating 2 organisms --
1) a mystery blood protozoa -- said to have some genetic sequences of toxoplasmosis and some genetic sequences of malaria -- First line of treatment would be babesia meds or toxoplasmosis meds
2) a gram negative bacteria -- get the impression that this is much more common than the protozoa -- may be a strain of bart or BLO or mycoplasma or other unknown proteobacteria -- first line of treatment would be bart meds (generally the same meds used for mycoplasma also) --
but many (including hubby) who have previously treated for bart still have this bacteria -- no one knows the optimum treatment -- hubby's LLMD says that many of his patients do recover or go into remission but even in those patients this bacteria still continues to show in their slides but at reduced levels.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
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Bea and Kelmo Thanks for the info. Guess we have have no more chances of establihing exactly what it is ,and to me it is clear (as I have written before) that it is such a shame a resourceful lab has not been involved.Sequencing the organims would have been a matter of weeks not months and years.So I shall stop asking questions that nobody can answer yet. All the best with the treatment attempts.
Gale
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I have this bug in the ring form. I've sent it off to Dr. K at Clongen to see what he thinks. My infectious disease Dr. thinks it is artifact. I am also a patient of Dr. F's. He had me on azithromycin and said it was ok for me to try Zhang's artemisiae. At the same time I started some meds for gastritis and had a bad reaction. I cannot take the PPI, or H2 blockers, I don't know why, it just gives my body this crushing feeling that's just not normal. I stopped all meds at this point. Since then I have started up on azithromycin and alinia and am finally able to eat again (although still losing weight) - and I have a bit more energy after 1 week.
My question is do any of you who have this experience weakness to where you can't walk 100 feet without feeling like you are about to have a heart attack and die? Some days I can't even just "stand," it is so taxing on my body. Is this the bug in the nerves, or ? I also think my body is eliminating protein so I wonder if my kidneys are involved.
I see some have tried alinia, in fact many have tried these medicines with no avail, so it's kind of discouraging. It's also hard because I want to know if all my problems are coming form this ONE bug. I would assume so. It seems that Dr's don't know anything about anything.
I would pay $100,000 for a cure at this point. What do we need to do to speed up the process?
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timaca
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If you have gastritis, have you been checked for enterovirus? See: www.enterovirusfoundation.org for more info.
Best, Timaca
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springshowers
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Big Dreams How do you know you have the ring forms? What test was done to give you that information?
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I had the blood smear.
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springshowers
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Have they determined that the blood "smear" is showing the protozoan?
I had thought that the blood smear only showed the bacteria just like always. And that the protozoan was seen on another test.
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Isn't an protozoan a parasite.
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springshowers
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TL Yes Protozoan is a name for the actual bug that causes the parasitic disease such as there examples:
Babesiosis is a malaria-like parasitic disease caused by Babesia, a genus of protozoal piroplasms.
Toxoplasmosis is a parasitic disease caused by the protozoan Toxoplasma gondii.[
Malaria is a vector-borne infectious disease caused by protozoan parasites of the genus Plasmodium.
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so HOW do we treat this?? With Artemesia? Mepron? something antiprotazoal??
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springshowers
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That is the million dollar question!!
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Personally i have had enough of this speculation which can go on for more years and years,and is meaningless for us amateurs(So I promise I shall probably stop posting here) Obviously Frylabs works hard to make an ID and has done so for years But any lab/doctor that finds patogenes that affect the health of very many people should contact the proper institutions (state labs etc) If there is substance to the hypothesis of a new kind a toxoplasmoses I am not so paranoid that I believe they would not be very interested.Or?? The fact that some LLMDs dont want to might be because they fear to get into the limelight-What a shame.
Gale
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springshowers
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I know you keep posting here that you do not want to participate any more.
Maybe in the coming up year there will be some more information but waiting month by month I agree with you that you may just find yourself more frustrated than ever.
I am sure you will be watching and will notice what is going on .
Why have you not called them yourself and ask these questions to the doctor or lab itself and find out that way. I know he talks to a varied and wide variety of people.
The questions you ask and want answers to have not and most likely will not come out through the patients and if it does it is tidbits of information and it has shown that that information is sometimes interpreted or understood totally differently than it is or differently from person to person.
Patients are not scientists and even though some are more well versed or educated you will not get far trying to pick through what is said if you looking for detailed scientific explanations.
Not only that there is always A Why or another question that comes from the answer that you might get.
Again.. as you seem so frustrated .... so have I been watching the same old questions posted here instead of trying to go to the source.
Take care
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Springshowers Just to make it clear Of course I have contacted them numerous times.And done the things as a patient that I have suggested to others. Edited: Within infection medecine the detection of and reserach in human pathogens nowadays is almost exclusively made in government funded institutions.That is so all over the world. Gale
[ 06-21-2009, 01:22 PM: Message edited by: galehane ]
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kelmo
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I'm with ya, Spring. It gets old.
Gale, maybe there is someone in Europe who is working on this that you could "encourage" to do more. Maybe things work differently there.
If you are doing research for medical science in the USA, you are either sponsored by the government or a pharmaceutical company. In those instances, you have an obligation to do it the way the people with the $$ tell you to do.
As Dr. F is independent, the money has been coming from the profits of his practice. There have been no donations until recently when he was approved to accept outside donations.
There is timing, resources, research, and concrete evidence that all must come together before you risk it all and go public. He has been making presentations before peers. But, as a lab guy, this is not his favorite thing to do.
This is how free enterprise works. Henry Ford, Thomas Edison all used their own money to create the marvelous inventions we enjoy today. The only time government had a hand in invention was by accident in preparing to go to the moon. (Velcro, microchip computers, satellite transmission)
You keep saying this needs to get into government hands. That's not always the best way. Government could actually be a hinderance. Government is already a hinderance when it comes to the Lyme treatment we have now. So, why go there?
There isn't anyone in your region where the government is working to help people who are chronically ill?
I'm sure this is frustrating for you. It's frustrating for me, too. It's MOST frustrating for my daughter, who's life has been pain and pills for the last decade.
But, it's hope that keeps us getting up day by day.
feelfit
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Amen Kelmo. Well put. With that explanation, perhaps the complaining will stop.
Feelfit
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springshowers
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Well put Kelmo Ditto
Everyone who knows things trys to share and it is never good enough. So I hope that people appreciate what is shared and learn from what is said.
We all want more. Believe me. I know as well as anyone.
BUT> I am glad for a man who is trying hard to find answers. I do not know anyone else like him.
I so admire and appreciate his efforts and his passion on trying to help suffering people.
I think we should turn our attention toward that. I
There are so many others in the field that can do this without him asking them to. Why arent they? There is enough information out there for anyone to grab ahold of and do something.
To keep posting how it is a shame and point fingers like the doctor is the one who has halted progress by not asking for others to get involved is ridiculous.
Its a free world. I think you should ask the rest of the people why they are not getting involved and trying to figure this out.
Maybe they do not care to.
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R62 You might want to read the (critical) thread about this subject on LNE.
Gale
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kelmo
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I have the DNA slide of my daughter's most recent blood test. Biofilm community is very clear. Don't know how to post it to this site. I have it in my profile on Lymefriends.
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kelmo
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It's a Fry lab test. I have it posted at Lymefriends, can't get it posted here, that I can tell.
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springshowers
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I am not sure how you can post a photo here either that is not already on a website that is viewable. I know Lymefriends needs passwords and registration to view.
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