seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Overall, do you feel this test has true value for $295? I had a Babesia FISH and IGenix WB already. I had standard extensive co-inf teststing through other insurance-covered labs and all were negative.
My IGenix FISH was negative.
I read several threads questioning the validity of Fry's blood smears and that maybe the lab isn't sure what they are seeing. I hate to spend $295 if that'e the case.
On the other hand, I don't want to miss something important. What do you think?
I assume the blood smear is not reimbursed by insurance?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Mine wasnt. As far as the validity, who knows? My smear said something about "hemobartonella or mycoplasma spp." My LLMD wanted to do it, but when I asked him what he would do with the info, he just said he wanted to see what came back.
In my opinion a waste of $$.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
posted
I did the $295 smear a few months ago with Fry, and I don't know that it was worth it. My understanding is that he was looking for all co-infections, but I'm not so sure now. It showed a slight (1 blood cell) with hemobartonalla and that was it. If I had to do it over, I wouldn't have spent the money. Insurance didn't reimburse me.
Posts: 215 | From Phoenix, AZ | Registered: Jul 2008
| IP: Logged |
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Insurance did pay for most of my Fry blood smear and the one thing I gained from it was reinforcement that I do not have babesia. Or least none showed up in the photo and none showed in the titer I had done as well. I should have just had the titer done and not paid extra for the smear.
However, I am not sure I would do it again as the hembartonella shows up for so many people, even healthy people and as of yet, Fry does not have it identified. So, it could be important or not important and having it just caused me extra worry.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8948 | From Illinois | Registered: Aug 2004
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I showed Hemobartonella/Mycoplasma. I'm not sure what it means.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm leaning towards no. There's not much purpose of a lab charging $300 if they can't give their patients concrete answers as to what they see. That seems unfair.
If they aren't educated enough yet on an organism to elaborate, it may be best not to say it. It would just cause me more worry and I have plenty already. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Chris which treatment are you using - or have you used -- in place of the quinolones?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm glad you're doing better, but obviously sad about the damage you already incurred from the other doctor. That's always my fear when docs don't worry about consequences of treatment.
You didn't say what you had identified by Dr. F. Was it the BLO strain or something more obvious? I apologize for my ignorance is I don't know if there is a difference between Bartonella and this BLO uknown bacteria being identified.
I wonder just how much Dr. F can identify in a blood smear?
quote:Originally posted by mynewname: Hi,
I posted my results a while back, you can find them if you search my ID#.
I was getting nowhere with treatment; had decided to go back to a highly recommended LD here in CA even though he is all about the $$$ in my opinion.
Aside, he Rxed Cipro 1500mg/day and it thrashed many ligaments in my body, not just my achilles.
He was wrong to do that on many levels, two of which are "shotgunning" treatment and monotherapy.
I was never warned about it's (highly) possible side effects, hence the developing lawsuit against him.
So I went to see Dr. F, not that it's not obvious who he is. He looked at the photo of the smear and said "That's what's wrong with you."
I've heard it before with Echovirus, HHV-6, Lyme, Babesia (thru that silly ART testing) and nothing worked, treatment wise.
So he Rxed some antibiotics and I felt worse for over a month. I asked him about the Floroquinolones for what he calls Haemobartonella and he said he doesn't use them, they tend to cause permanent damage. I did not mention the damage already done to me.
Now tell me why the so called "rock star" LD prescribes Cipro without any warning and the other doctor who "doesn't know what he's looking at" won't prescribe them?
To answer your question, YES, it was well worth it, it saved my life.....maybe. I was spiraling toward an early death for sure and I've yet to hit 40, not even close. I wish I had seen him a year and a half ago when I had the test done.
I've only been in treatment a couple months but feel like I've turned a corner, other than my ligament damage. After the long "flare" or herx I felt better and could do more.
My brain fog has lessened and I have more energy. I see him again in a month. There is still obviously a long way to go.
Bottom line, if your treatment is straight forward and you are slowly getting better, maybe it's not worth it to have the test done.
If you are like me, a total treatment failure with nothing to lose and looking for answers, it just may save your life, or help you improve anyway. If you get a positive, maybe consider asking your doctor to treat Bart without quinolones, there are many options.
Dr. F is a microbiologist or something and he is working on his next generation of testing. Way too complicated for me to understand.
He is now calling the blurbs attached to WBC's as haemobartonella, not Mycoplasma.
Sorry for the long winded answer, in my opinion he is a pioneer but I'm just a sick person with little medical knowledge but I do know I'm feeling better and that's saying a lot!
I also had to get my shot in at the CA LD, couldn't help it. GL,
Chris
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
Hubby had the bloodslide done 2 times in 2007. I think it was some of the best money we ever spent.
Hubby had done the standard 3 months of levaquin back in 2003 so we didn't know he still had bart/BLO/mycoplasma or whatever. In my opinion the treatment is pretty much the same whatever you want to call it so the label is not really that important.
Hubby's slide also showed Babesia which we also thought had been treated. After 4 months of low dose quinine and Clindamycin the 2nd slide only showed the Bart or whatever. The Babesia was gone.
Unfortunately since hubby had not treated Bart in 4 years everything fell apart in a really bad way when we tried treating that. Finally went back to his old standby Levaquin which for him worked miracles for a few months.
Unfortunately by the time we got to our new LLMD in early 2008 hubby had had some Babs symptoms come back. So now he is treating Babs, Bart and Lyme all at the same time. Went really well for 8 months but seem to have hit a roadblock again.
We are working on changing meds again.
Hubby had been negative on Babs and Bart tests from many labs -- IGeneX, MDL, StoneyBrook, Immunosciences etc. Personally I put a lot more faith in a bloodslide than an antibody test anyday.
If you are not sure if you have coinfections or don't want to treat them unless you have a positive test, then I would do the bloodslide.
We do plan to repeat this test on hubby, but could be a few months yet since he is still symptomatic for Bart.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
quote: though not officially a LD,
Dr. Fry is an LLMD, but he chooses not to put himself in that small of a box. He belongs to ILADS and The Road Back Foundation. He attends all the conferences LLMD's attend, and then some.
He can confidently say that Lyme is not a big issue for him to iradicate. He has several people who come from the east coast. We just don't see that much Lyme borrelia here in the SW.
Edited to add: He says that Lyme can be knocked down in a year. It's this organism he has a hard time getting rid of.
He also said with his new PCR, he can identify babesia 100% of the time.
He thinks we are getting organisms from south of the border. In PCR testing, it just wasn't coming up as any of the bartonellas, it was a hybrid of mycoplasma and bart.
Just wanted to clarify that he is an LLMD, but not limited to Lyme.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I just got off the phone with the person answering the phones at Fry. I asked the person to explain the blood smear more as to what they are trying to ID, preciseness, etc.
I have to say I'm not impressed one bit with their professionalism. The person seemed kind of uneducated and didn't make me feel the $295 was worthwhile. I was told they can't positively ID things much, Babesia never shows up, etc.
Sounds like a waste of money to me based on this conversation. I like to detect more professionalism and confidence in their abilities for $300 for a simple test.
I guess when insurance doesn't cover something, you don't have to be precise.
This is not meant to attack Dr. Fry or question his knowledge by any means. I'm simply saying their firm needs to be more knowledgeable. I picture Dr. Fry behind a microscope while the staff is a bunch of people fresh out of school. Maybe I'm way off?
When it comes to parasites / ovas, what could Dr. Fry see that Quest and other specialty labs were unable to view under the microscope? Does he have a super microscope better than these facilities?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic