Original post had been deleted. Sorry - most of it is back. [This information is from a fellow Lymie and is posted with their permission.] I am not yet familiar with this protocol/doctor. Grace ===================================================================
From a Fellow AZ Lymie:
I was diagnosed Igenex positive for Lyme, Babesia WA-1 and Bartonella 2 years ago (also positive for mycoplasma, strep, hhv-6, Epstein barr, etc). I won't go into how sick I was when I began treatments (bicillin injections, mepron, and zithromax)...just know I was bed-ridden and totally hopeless for almost a year.
I have been on various antibiotic treatments in these 2 years but started the Plaquenil/Biaxin combo in August of this year.
My Vitamin D levels were as low as 8 a year ago. I'm now up to 50 on 7000 IUs.
White blood cells counts haven't been higher than 2.5 since my early 20's and that's up to almost 4. I'm thrilled to report that I'm making slow but dramatic improvements, especially in the last number of months.
I'm not a microbiologist, just an R.N., so I'm not an expert but in case anyone's interested, the organism that I believe they're going to find is far more prolific than Lyme (and possibly so often mistaken for Lyme) is the organism one doctor was once calling "bartonella- like."
This doctor now knows its genetic make-up and has found that it's a betaproteobacteria. . . . it is interesting to note that it has a tail. . . .
. . . there's now genetic proof of the exact organism reeking so much havoc and within the year this doctor projects (thanks to, among other things, a grant from the Department of Defense) he'll have the ability to discern more concretely and scientifically what treatment(s) will be most effective.
At present, most of us with this bacterium are improving on an antimalarial like Plaquenil (having a much longer track record than Mepron) and Biaxin or Minocylcline.
. . . I tried to do the low Arginine diet he recommends (in the lab the bug has to have Arginine to grow) but think I'll just be taking Lysine supplements instead - relying on the theory that Lysine and Arginine compete.
All this to say, it's my personal opinion (and only worth the electronic "paper" it's written on) that anyone who's gotten a Lyme diagnosis should pursue knowing whether or not they may, in fact, have this betaproteabacteria. =================================================================== Author's name withheld ------------------ Here is another tidbit from a different Fellow AZ Lymie:
His meds were moved from Azithromycine and Mepron to --> Plaquenil and Biaxin. He had some complaints about loss of strength, stamina, and very long recovery times after exercise. Evidently that was attributed to declining effectiveness of the former protocol. Hence the move to Plaquenil and Biaxin. He said these are much cheaper; easier to take. ----------------------------------------------
[ 20. November 2008, 11:10 PM: Message edited by: GraceT ]
Posted by bettyg (Member # 6147) on :
so it's bart-like illness??
Posted by clairenotes (Member # 10392) on :
Thanks for sharing this info. You might want to include "DR. FRY" in the Subject line as I know there are some here who are very interested in his smears and the results he is reporting.
So, I find this somewhat confusing. He is reporting smear results as "haemobartonella or mycoplasma-like". When I spoke with him a few months ago, he indicated that the 'mystery bug' appeared to be in the "mollicutes" Class (includes mycoplasma genus/species).
Now he is stating that it is in the Betaproteobacteria Class. Mycoplasma and bartonella species are not part of this class of bacteria. Bartonella species are instead in the Alphaproteobacteria Class.
I hope we get some clear answers to all of this soon....
Posted by treepatrol (Member # 4117) on :
Now look at this>
Multicolor CARDFISH images of Nautilus macromphalus symbionts in Pericardial Appendages. The spirochaetes symbionts are in red, betaproteobacteria symbionts in green and Nautilus tissue is stained in blue with DAPI.
This expains it they are symbionts with spirochetes and this explains after doing mepron with minocin and biaxin then rifampin added in I got better. I am going to research this more alot more! This example above is on a Nautilus macromphalus Fish.
Posted by DoctorLuddite (Member # 13853) on :
A Department of Defense grant to study it? Why does that not leave me with a warm, fuzzy feeling?!?!?!
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by DoctorLuddite: A Department of Defense grant to study it? Why does that not leave me with a warm, fuzzy feeling?!?!?!
Now you know they are just checking to see if was there creation hahaha. warm and fuzzy hahaha that there not Posted by treepatrol (Member # 4117) on :
Check this out Is autoinducer-2 a universal signal for interspecies communication: a comparative genomic and phylogenetic analysis of the synthesis and signal transduction pathways
In some other pathogens luxS- mutants showed none or very subtle changes in virulence related traits (e.g. Borrelia burgdorferi, [17]; Porphyromonas gingivalis, [18]; Shigella flexneri, [19]). In Salmonella typhimurium AI-2 controls the expression of an ABC transporter which is responsible for the back transport of AI-2 into the cell, presumably to conserve metabolic energy or to interfere with quorum sensing mechanisms of the gut microflora [20].
For the Betaproteobacteria, the pathogen Neisseria meningitidis uses the two step pathway, while Ralstonia solanacearum and Nitrosomonas europaea use the one-step pathway.
Now we need to find out which pathway this new guy uses!! However, presently the Pfs/LuxS pathway has been found in Borrelia burgdorferi (Spirochaetes)
The sequences of LuxS orthologs were aligned and a phylogenetic tree was built from the alignment. There are clearly three bigger branches in the phylogenetic tree (Fig. 4). The first contains most Gram negatives, i.e. Gamma- and Betaproteobacteria. The second brach is comprised mainly of Lactobacillales, but contains some other groups as well. Interestingly, the LuxS ortholog from Bifidobacterium longum, which is the only species of Actinobacteria having LuxS, and which at the same time has the SahH pathway for recycling of SAH, is most closely related to that of the phylogenetically only distantly related Lactobacillus plantarum. Both bacteria share the same habitat, being commensals of the healthy human gut. There would have been ample opportunities for B. longum to acquire luxS by horizontal gene transfer from Lactobacillus. The Lactobacillus branch also contains a small subcluster with luxS from Borrelia burgdorferi, a Spirochete, which is most similar to luxS from Clostridium acetobutylicum. The third branch is dominated by Bacillales. Interestingly, it also includes two of three sequenced Epsilonproteobacteria, namely two strains of Helicobacter pylori. However, the closely related Campylobacter jejuni forms a separate, deeply branching lineage. These data confirm those of Lerat & Moran [28]. Small differences can be attributed to the treeing methods used, e.g. the position of Campylobacter jejuni luxS and the fact that γ-Proteobacterial LuxS genes were monophyletic in our analysis, but comprised two different branches in their tree. In addition, we included luxS sequences from Enterococcus faecalis and Deinococcus radiodurans. The robustness of the tree topology is caused by the high degree of conservation of luxS and strongly supports the resulting conclusions regarding gene transfer for some species.
My point
The phylogenetic tree of LuxS does not in all cases correspond to the 16S rRNA based microbial phylogeny. Thus, horizontal gene transfer might have resulted in the acquisition of LuxS genes e.g. in Bifidobacterium longum, Helicobacter pylori, Clostridium acetobutylicum and Borrelia burgdorferi, with the insect or mammalian gut serving as a melting pot of species.
Grace did he say anywhere if its Gram Pos or Gran Neg??? He now knows its genetic make-up and has found that it's a betaproteobacteria. (He'll get to name it in the coming months... I think he should call it luciphersomething! )
Posted by Lymeblue (Member # 6897) on :
Gram Neg
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by Lymeblue: Gram Neg
How did you know trhat? lymeblue
Posted by adamm (Member # 11910) on :
Hmmm-- we know that the Mycoplasmas are favorite biowarfare
agents and that this "BLO" responds best to the drugs that are used
for those bugs, so please forgive my incredulity upon hearing
that the organism, previously theorized to be a one, has been
reclassified by the recipient of a DoD grant.
[ 19. November 2008, 11:36 AM: Message edited by: adamm ]
Posted by Lymeblue (Member # 6897) on :
Go to the link provided on the first post to wiki Posted by treepatrol (Member # 4117) on :
quote:Originally posted by Lymeblue: Go to the link provided on the first post to wiki
Hi LymeNet Team ~ There is some concern about leaving the original Post, so it is being deleted out of respect to Dr F, the Dept of Defense, and my new team-mate.
Smiles, Grace
Posted by adamm (Member # 11910) on :
GraceT--I'm puzzled as to what you're saying.
Posted by hiker53 (Member # 6046) on :
Since so many betaproteobacteria are harmless and a lot of healthy people have these, I don't think we can jump to the conclusion, yet, that they are what is making us ill. As teh CDC told me if you had that many pathogenic bacteria in your blood you would be dead.
So, I am going to think positive and assume if he has found something new that it is not necessarily dangerous.
Hiker53
Posted by Lymetoo (Member # 743) on :
just delete the thread if we can't read it anyway.
Posted by clairenotes (Member # 10392) on :
Perhaps it is simply that this 'study in progress' was not yet approved to be made public?
Claire
Posted by KS (Member # 12549) on :
GraceT,
I don't know why you are deleting your post. It would be one thing if the information you shared were confidential AND Dr. F weren't making a business for himself reporting this mystery bug to many of us. Myself and many others have invested about $300 for his smear and so I'm invested in better understanding its meaning and outcome. I don't believe anything we've exchanged here would harm his research....
Posted by treepatrol (Member # 4117) on :
Deleted why? I dont like that there was nothing wrong with it geez!!!!!!!!!
I hate when people do that. Only reasons for deleting is that is really offensive or well iam not going there dang
Oh
posted 19 November, 2008 01:20 PM -------------------------------------------------------------------------------- Hi LymeNet Team ~ There is some concern about leaving the original Post, so it is being deleted out of respect to Dr F, the Dept of Defense, and my new team-mate.
Smiles, Grace
-------------------- Heal thyself and walk out into the Light! ~Grace~
Posted by seibertneurolyme (Member # 6416) on :
I missed the original thread.
Here is something I found that explains just why we need research money -- this study was on only 7 ticks and look at all the things they found -- some may be pathogenic and others not.
Ok -- can't get the link to work.
Go to google and type in the phrase -- "Intracellular symbionts and other bacteria associated with deer ticks"
Should be able to access the entire journal article -- See table 1
Bea Seibert
Posted by Myco (Member # 9536) on :
C,
What are you taking that is showing so much improvement?
Posted by CD57 (Member # 11749) on :
Wait--I'm confused. Is this saying the Lyme may instead by this protobacteria--ie; because it has a tail it may test as Lyme? Or it's separate and different from Lyme?
Mynewname....wow, so what meds were you on for it? Did the Dr put you on those? Do share!
Posted by clairenotes (Member # 10392) on :
Dr. F is exploring the possibility that a bartonella-like organism (BLO) is responsible for bart symptoms. He sees something (a microbe) that falls into the category of a betaproteobacteria, and if he can identify it, may then have more specific or efficient treatment options for it.
Claire
Posted by DebAz (Member # 18039) on :
Knowing a new name sadly is not going to give us a new treatment. During finding a new bacteria i am positive there has been testing on what responds to it..
Posted by clairenotes (Member # 10392) on :
That is sad that a more proper or accurate identification of the microbe will not lead to a more efficient treatment. Sometimes that helps when using alternative medicine such as herbs or homeopathy.
Claire
Posted by clairenotes (Member # 10392) on :
Quote:
"If he has been studying it it is obvsoius that he has been testing treatment protocols along the way."
Hmmm... you know, I don't think that all biologists work on both sides of the equation simultaneously. No... that is not clear to me at all. Sorry.
Claire
Posted by bears1985 (Member # 17271) on :
Claire,
I dont understand why the so negative response? If the microbe is understood and $$ for testing drugs against are given, why cant that lead to an efficient treatment. Clongen labs are identifying several new strains of Babesia...do you not think that this will eventually lead to better treatments?
Posted by mynewname (Member # 11950) on :
Bears et al,
I don't get it either, but I have a negative approval of many of the "treatments" talked about here along with the practitioners that have side companies to sell their overpriced products that marginally work at best.
Hello, Clairenotes there are treatments, antibiotics and antimalarials that work against this thing. Probably Rife too if I can find the right frequencies.
I've written up what I'm doing with this MD AND Microbiologist twice and they just ignore it. It's not rocket science, it's treating it as a parasite and bacterium which it is.
Read Treepatrols post on this thread. Tree wrote that he/she got better on the same meds I'm on, only I'm on plaquenil rather than Mepron.
I asked Dr. F at my first appt if he was aware what a firestorm he created with his testing and bug identification(s). He said not really, I don't have the time, I'm trying to help people.
So I no longer have the time either and I'm done defending him. Let the ignorant squabble among themselves and whine and complain about being out $300 if that is their choice. Don't send your blood to him.
Let them ignorantly say there's no treatment when there really are treatments, who cares?
I AM getting better with him after years of nothing working, including a year of seeing A.D. in Seattle, the Klinghardt protege. The only thing that did for me was I was sicker and about $5K lighter in the wallet.
With Dr. F I am out the $295 and travel expenses and $2 copays for the meds along with a few supplements that he doesn't even recommend.
I have no concerns about his motives; what I saw was two full time assistants working in his lab on his new testing procedures.
Next time I'm there I'm bringing my golf clubs if I'm not herxing and I haven't done that in a few years. Lots of killer golf courses in the Phoenix area
Chris
Posted by clairenotes (Member # 10392) on :
Bear --
My original comment was this:
"Dr. F is exploring the possibility that a bartonella-like organism (BLO) is responsible for bart symptoms. He sees something (a microbe) that falls into the category of a betaproteobacteria, and if he can identify it, may then have more specific or efficient treatment options for it."
However, someone subsequently wrote that Dr. F does not have a new treatment for it... something to the effect that simply finding a new name does not necessarily mean finding a better treatment in addition, in this particular case. She seems to have more information on the situation than I do, so I am deferring to her insight, which is not positive right now.
You might re-read the last few posts.
In general, however, I am still hopeful that this can only lead to greater treatments down the road, if not in the present as I alluded to earlier on. Strangely, I think you are using some of my own words...
Have you considered posting the information on the newly discovered babesia strains and rx on a new thread? Others may be interested.
Claire
Posted by Alv (Member # 15192) on :
this is awsome.So my body was telling me that this is the drug I need to take.
And Actually I muscle test positive only for MINO , Biaxin , PLAQUINIL.
So far I have everything GRACE T has..ALL OF THEM ...but I would colapse..and finally we mucsle tested and found this drugs were positive in the body.So basicly this is the only bug that I have not address.,
That makes sense as I was thinking BLO but MY body says NO MORE RIFAMPIN and NO MORE LEVAQUIN.
As I took them longer than anybody .So ART is the way to go ..the body tells what needs and what it does not...
Posted by clairenotes (Member # 10392) on :
mynewname -- I am sorry that you didn't get better with Dr. K's methods. I would imagine, as Gigi says, that quite a few do not, same as with abx treatment. There seems to be a lot of different variables involved in the success or failure of various treatment paths.
But the important thing is that you did get better on something, i.e., the treatment protocols that are already in place for bartonella. It was my original thought that perhaps a more correct identification of the microbe involved would bring an even more streamlined approach.
Hope you continue to do well.
Claire
Posted by clairenotes (Member # 10392) on :
Alv -- is that not fascinating that you are muscle-testing for abx?!
Things are progressing in so many different ways!
Claire
Posted by KS (Member # 12549) on :
Just to respond to an earlier poster...I don't see anyone questioning Dr. F's motivation....I just see a bunch if sick people anxious for answers, hope and healthier days!!
Posted by Alv (Member # 15192) on :
Yes MY LLMD is under training of DR K.She uses Antibiotics and HERBS and HOMEPATHIC formulas.
She musles test all of them to me when I see her.
When I see her I take a SUITCASE( LOL) with all of the things I have.Even the ones that I used a year ago.WHEN they consistanty show that they are are not showing up strong over and over that we know we are chasing a diferent bug.
YES we check with vials also...but knowing that are many strains ...let say babesia or bart etc...we try which one drug or herbs..is showing that is getting it.SO we combine them all.USING biotensor has been a blessing also as I can monitor myself daily ...than I see MY ND and MY LLMD both muscle test.
Posted by mynewname (Member # 11950) on :
Sorry folks, didn't mean to sound so freaking angry. Blame it on the Rifampin. Seems the mornings are worst for the rage, gotta stay away from here, lol.
I think it's interesting that this thing has both parasitic and bacterial components to it. Add in the possibility of the biofilm and it is a deadly organism.
Is it opportunistic? I guess the only proof will come with improved health and going seronegative.
One can argue that the antimalarials like Plaquenil and Mepron are hitting Babesia but I don't think so, in my case anyway.
Whatever it is, if it's not opportunistic and is the reason why I feel the way I do as he said, this thing is one nasty, scheming sob.
Peace to all and I hope this ultimately gives us a better picture re our illness and better treatment(s).
Alv, if you read this your mailbox is full and I can't reply to your queries.
Chris
Posted by GraceT (Member # 16558) on :
Please Note - This Post is not about Me. I posted it with permission from someone else. My original post was clearer. I apologize for miss-leads and will fix that now.
Alv, Your mailbox was full - sorry that I could not respond to your PM.
Gifts and Graces - -
Posted by clairenotes (Member # 10392) on :
Thanks for the clarification. I am not familiar with Dr. F's work beyond his testing, and that is only from what others have discussed here. I am definitely not familiar with his treatment protocols.
I am interested in his findings, however, as it has been a mystery for a long time now as to what exactly this organism is.
Claire
Posted by galehane (Member # 15437) on :
Dear Grace T As you know there has been much confusion about this bug. It would be very important to know how relieable you think this info is.Is it confirmed definetely? And do you know if the bugs in the smear- findings are the same, or does it apply to your friend only? etc?
Yours Gale
Posted by DebAz (Member # 18039) on :
this still is an interesting subject and if anyone has information lets share it, I may find out more next month on my dr visit with Dr. F and maybe it can become more clear to us..
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