posted
Hi, I have not been here in a long time. I really hope most of my old Lymenet friends are better and gone from here! I wanted to post the actual words that are at the bottom of the two tests I had at Fry labs. Can others PLEASE let me know if yours had these words? If they did not have these words, can you tell me exactly what yours said? I believe I understand this except for one part.
The test called "special stains" says "Many coccobacilli adherent to erythrocytes. Indicated by yellow arrow. This is suggestive of Hemobartonella (1) or Hemoplasma (2) Hypochromic erythrocites observed
I know others have said hemobartonella or mycoplasma. Has anyone had the words hemoplasma or hypochromic erythrocites? If you do, what is your understanding of this. I did some reading about it and I think I get it sort of, but I will look forward to Dr. F's interpretation. He is my new doctor
The second stain. is called Flourescent and Enrichment stains. It says
"Detected (substatial). A substantial level of biofilm community-like structures and/or organixms were observed using DNA staining technology or Giemsa using enrichment via centrifugation."
I know a bit about biofilms but not much. A small bit of background. I first was diagnosed 10 years ago after 10 years of misdiagnoses. I had CDC positives IGM, IGG western blogs, and positive erlichia tests plus plus some viruses. Not to scare anyone or anything but I had 4 years of antibiotics including two rounds of IV, a year of high dose bicillin injections and then orals. I have abnormal brain MRI's, spect scans and neuropsych testing.....
After five years of no treatment, I felt I was getting worse and just recently went to see Dr. F. My Lyme western blot IGM is CDC positive, only 1 IGG band, and then high C-reactive protein levels.
If you would share, I would appreciate it. The terms I am most unsure of are "hemoplasma" and "hypochromic" even though I looked them up I find hematology difficult to understand.
Also....I paid for a full profile that costs 595.00 I wonder if these are the two tests I get or if there are more. I don't see him until the end of this month.
Thank you........
Lis
[ 09-16-2009, 05:18 PM: Message edited by: SWLisa ]
Posts: 15 | From USA | Registered: Dec 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Hi Lis. First thing you need to do is to edit your post and remove the Doctor's name. You can change it to Dr. F. Click on the pencil icon and you will be able to edit and repost.
Second, my daughter has been a patient of Dr. F's for three years. He has always had suspicion of something other than lyme causing the illness to become chronic.
He talked about biofilm to us over three years ago.
My daughter recently had that batter of tests done. That cost should also provide you with bloodwork that you can request a copy.
Sounds like you have really had some treatment.
When you see him, take a list of all your questions and ask him to go through them with you.
My daughter had a very large blob in her bloodwork. It was a biofilm cluster of bacteria, yeast, protozoa and other things.
I can tell you that she is VASTLY improved from three years ago. But, she still has a ways to go to being 100%.
If you live in town, check out the Yahoo Groups: Arizona Lyme Support. Dr. F will be speaking to us this weekend. Look there to find out times and the location.
Good luck Kelmo
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
There have been a number of posts on this subject and I bet you will find your answer if you search the archives.
The bottom line is that hemobartonella has been reclassified as hemoplasma or althernately called hemotrophic mycoplasma. So, I guess he is using both terms, but they may refer to the same organism.
The stain and technique he is using will show some things and not others. That is why there are a number of different stains and techniques. Some of us have multiple unidentified critters in our blood, including the one he is finding.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thanks Lou, I am just seeing this..... OH ok. Thanks. I will do a search for the other term and see what it means....
It is very strange that he is finding this new mystery bug in people who are constantly sick. I really thought after the four years of abx, that I had killed the active bugs and was left with either permanent neurologic damage or perhaps auto-immune. It has to be very powerful for all of those different abx to not kill it. I took everything and anything in very high doses and plus I did lots of alternative medicine....
In one way it is upsetting, in another way, it is hopeful because it means that there is something there to treat and explaining my worsening symptoms.....
Posts: 15 | From USA | Registered: Dec 2007
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posted
Here is my other question, or really it is just food for thought. No other lab that I know of has been able to actually see "borellia bacteria" in the blood. They have not been able to culture it and most people have negative PCRs.
He seems convinced that Lyme is not what is making us chronically ill, but this other bug. I don't doubt I have other bugs, but how does he know it isn't Lyme for sure as well. I will have to ask him this.
Posts: 15 | From USA | Registered: Dec 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
SWLisa, if you can scan and post your slide, that would be helpful too. I posted a part of my Fry slide earlier.
Your second question is interesting. Fry hasn't been able to pinpoint anything really outside of suggestive findings. So you have to put things into perspective. Fry is helpful but still far from conclusive.
I happen to think lyme is still a major player (for me at least).
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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bettyg
Unregistered
posted
hi lisa just welcoming you back ... hugs
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posted
Thanks Treepatrol, it's nice too see you still helping others!
I will post my slides-I have to figure out how to do it!!
I will also let people know what Dr F says. He is speaking here tomorrow and I don't think I can make it.
Posts: 15 | From USA | Registered: Dec 2007
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
How was the Speaking Engagement?
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
I have similar test results from him as you do, I was also IGG and IGM positive for lyme by Igenex. I have done IV antibiotics for a while and my lyme tests look really good, not perfect but it is almost gone... The problem is, I still have all the same symptoms and in the same severity as well.
So now we are looking into getting the biofilm gone even though no one really knows what they are doing yet when they are trying to get rid of the biofilm. My LLMD believes this is why chronic infections, are in fact chronic/take so long to cure.
I know my bartonella is still at large, I have treated it with IV levaquin and Doxy for up to 4 months in a row and it has done little to nothing... My doctor is kinda stumped right now.
Posts: 458 | From Miss | Registered: Mar 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I am on IV EDTA and Oral EDTA and IV Flagyl and IV Zith. Doc thinks the Flagyl is hitting the protozoan infections and the EDTA is helping strip the biofilms.
As well my headaches have lifted and pain levels are evened out and even sometimes reduced. He says it is all good signs that I may be hitting this bug beyond the blood which is great to hear.
I know many of us are trying to find things to add to our supplements that are known to have biofilm stripping attributes.
Lets keep sharing what we find and maybe this can rea
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Does anyone know why this mystery protozoan can not be killed by alinia?
I am allergic to flagyl. Karen
Posts: 1834 | From US | Registered: Oct 2008
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posted
Karen, my understanding is that so far no drug can "kill" the protozoa but only suppress it. So it isn't able to be completely gotten rid of. That is what Dr. Fry told me yesterday.
I am not a good person to talk about treatment with because I had four plus years of all kinds of treatment including IV, bicillin shots, various orals as well as thousands of dollars in alternative medicine. So I don't want to discourage anyone!
But I will tell people this. I stopped all treatment because even a few LLMDs told me they didn't know what to do for me and they felt more antibiotics would not help. So I quit all treatment to do only natural medicine. Five years later and I have gone from having 2 lesions on my brain MRI to 20. Yes I now have 20 white matter lesions and I am really really upset about it - I knew it could be bad before I had the MRI because my cognitive problems seem much worse. I also stopped antibiotics because could not stand being on antibiotics - I felt like was being poisoned.
I did do all the natural things after abx - detox, IV nutrition, hormones, metals, you name it and I did not get better. I am someone who always believed in all natural medicine, I eat almost all organic - so the thought of going on antibiotics is very upsetting, but I can't keep going downhill like this...
So my point is, as much as I hate to say this, and it is just my opinion, I wouldn't go off antibiotics until I was symptom free for six months or more. Not after this experience - and if my body could handle it.
Perhaps this protozoa is the key. He uses plaquenil karennl, not flagyl. At least that is what he is starting me on. He said that at this point he would not give me anything for the bifilms yet because they are at such a high level. I know I am going to herx terribly, we'll see
OH can someone tell me how I can post my slide photos and I will??.
Posts: 15 | From USA | Registered: Dec 2007
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posted
SW Lisa, I am not suggesting that you try rife if you haven't done it, I just think that it would help others to know if you did rife and it failed. I don't believe that it works myself.
Posts: 132 | Registered: Jul 2005
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posted
I feel badly I never answered this. Yes I did try Rife. A friend let me borrow their machine for six months.
An update I have now been in plaquenil and biaxin for 3 months. The first month, I didn't notice anything. For the past two months I hve been much worse. Maybe it's die off.
I still don't know whether i believe Dr Fs philosophy about Lyme not causing me/ us to be chronically ill. I just want to be better and I'm glad he is looking for answers. He is also fair in what he charges for visits which is very hard to find.
Posts: 15 | From USA | Registered: Dec 2007
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My doctor is kinda stumped right now.
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