Topic: Anyone test negative by Fry still get treated?
Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I posted a couple of days ago concerning whether it's possible to have lyme w/o co-infections.
I think my real question is:
Since Fry is supposed to be accurate (or at least that's what it seems I've understood from people here)did your LLMD think you did not have co-infections if Fry found you to be negative.
Or did any of you get treated anyway based on symptoms?
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They're a research lab and therefore not always covered by insurance. They're ILADS approved.
They have pictures of examples of slides of blood cells which are positive for babesia, bartonella and ehrlichia.
I learned about them through lymenet posts and talked my LLMD into using them.
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Kelmo, how lucky you are to be near the lab and are getting treated there.
Does he have any explanation why it wouldn't show up on a slide?
Are you being treated for both babs and bart
You mentioned epstein barr and some others. I tested postive for the three epstein barr strains 15 months ago, but now only for two. I think you have to have all 3 to have mono. So that improved without treatment.
Have your symptoms gotten better after treatment?
This all gets so confusing.
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treepatrol
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If you have been bitten any amount over 2 or 3 times like me I have been bitten at least 100 times & at least 15 to 18 immbedded. Iam treating for everything regardless if anyone finds it in my bloood or not.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
kelmo
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Member # 8797
posted
It's the ol' cup in the ocean analogy. If you dip a cup in the ocean and don't get a fish, does it mean there are no fish in the ocean?
The bacteria are pretty good about hiding in tissues. If I've been infected for a long time, it seems my immune system has been doing a pretty good job. I was sick for most of the 90s.
However, I have been having symptoms lately that are unrelated to "normal" diagnosis. The guess is, the bacteria have made a home in the small vessels and lungs. Only a guess. We are treating with zithromax, and that's all.
The doc said when we started to see him that one woman had a clean blood test five times before Borrelia finally showed up.
My daughter tested positive for two strains of bartonella and babesia. We have yet to find borrelia.
Clinical symptom diagnosis is what we usually get. It's nice to have the hard facts, but it's not going to happen as long as the testing is hit and miss.
By the way...I get no compensation for telling about the Fry lab. I only asked for permission to share contact information when his lab went public.
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Bugg
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posted
Hope the following helps someone: I went misdiagnosed for a year after tickbite and bullseye rash and then finally tested positive (twice) for lyme on Western Blot. I had horrible neuro symptoms, arthritis pain, and fatigue and no orals helped. I finally got my cognitive functioning back through IV Rocephin. However, after the Rocephin, I never seemed to make additional progress. My LLMD at the time used the approach of treating for all co-infections because he believes the testing is so inadequate. The unfortunate thing about that approach for me personally was that I was so ill I really couldn't tell what medication was helping. This physician also only prescibed 40 days of treatment for babesia with malarone, quinine, and clindamycin. He said he got the best results with this combo and that 40 days was probably effective. I switched LLMDs and now see one in Manhattan. I tested for every co-infection under the sun and used the Fry test for babesia. I tested negative for babesia and all other co-infections. Based on my LLMD's observations, however, he believes the reason why I haven't made additional progress is due to undertreated babesia....Well, I was concerned about his diagnosis because I didn't have the classic "night sweats" or migraines....He prescribed months of mepron, zith, and art....Well, about a week into the medicine, I had symptoms come out that I had never experienced before...Very stiff neck, very stiff muscles along the spinal column, tightening of the ribcage, light night sweats, feeling like I had a temp of 103 even though it was below normal....I'm into my fourth month of treatment and most of these symptoms have now abated and my cognitive functioning and fatigue is better....Once I'm finished with my babs regimen, I'll give you my full assessment of my progress...All of this is to say that even though I tested negative with the Fry test and didn't think I had the classic babs signs, my LLMD and I now both believe I had undertreated babs due to my reaction to the babs meds...
Hope this helps!!!
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Hope the following helps someone: I went misdiagnosed for a year after tickbite and bullseye rash and then finally tested positive (twice) for lyme on Western Blot.
I had horrible neuro symptoms, arthritis pain, and fatigue and no orals helped.
I finally got my cognitive functioning back through IV Rocephin.
However, after the Rocephin, I never seemed to make additional progress.
My LLMD at the time used the approach of treating for all co-infections because he believes the testing is so inadequate.
The unfortunate thing about that approach for me personally was that I was so ill I really couldn't tell what medication was helping.
This physician also only prescibed 40 days of treatment for babesia with malarone, quinine, and clindamycin.
He said he got the best results with this combo and that 40 days was probably effective.
I switched LLMDs and now see one in Manhattan.
I tested for every co-infection under the sun and used the Fry test for babesia.
I tested negative for babesia and all other co-infections.
Based on my LLMD's observations, however, he believes the reason why I haven't made additional progress is due to undertreated babesia....Well, I was concerned about his diagnosis because I didn't have the classic "night sweats" or migraines....
He prescribed months of mepron, zith, and art....
Well, about a week into the medicine, I had symptoms come out that I had never experienced before...
Very stiff neck,
very stiff muscles along the spinal column,
tightening of the ribcage,
light night sweats,
feeling like I had a temp of 103 even though it was below normal....
I'm into my fourth month of treatment and most of these symptoms have now abated and my cognitive functioning and fatigue is better.
...Once I'm finished with my babs regimen,
I'll give you my full assessment of my progress..
.All of this is to say that even though I tested negative with the Fry test and didn't think I had the classic babs signs,
my LLMD and I now both believe I had undertreated babs due to my reaction to the babs meds...
Hope this helps!!!
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Yes, this does help a lot. It seems that I should ask my LLMD to treat for babs and bart even though I dread the antibiotics used for them.
I've always ignored posts on these two since it seemed I didn't have those symptoms, but your experience Bugg tells me it's possible I could still have them.
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adamm
Unregistered
posted
Wait--why do you dread the Babs meds?
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
None of the ones you mention ring a bell, but I thought there was one used that causes tendon problems and other side effects.
Maybe I've confused it with a lyme antibiotic. Is it rifampin? Too tired to look it up now.
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Marz--
If it's any help to you, I took abx (Rifampin) for bart and didn't herx on it at all. However, about a week into the babs meds, I started herxing like crazy....(Just wanted to clarify my earlier post)...
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TheCrimeOfLyme
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Member # 4019
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It is possible. Its also taking a huge chance not to treat coinfections and can hamper recovery GREATLY.
Five years into treatment, I got BETTER, but not great. Bartonella was the cause and I had treated it way early in. I didnt wait for a positive, I decided to start bart tx based on symptoms. And it worked.
Thats just my opinion.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
One more question:
I've been off abx for two months and been doing pretty good until this week.
The headache with pressure at base of skull seems to have returned. I've always thought that was Lyme, but could that be more of a babs headache?
Posts: 1297 | From USA | Registered: Dec 2002
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quote:Originally posted by Marz: One more question:
I've been off abx for two months and been doing pretty good until this week.
The headache with pressure at base of skull seems to have returned. I've always thought that was Lyme, but could that be more of a babs headache?
Anything is possible. You may want to ask your LLMD if you can take some Artemesaie for a couple of weeks to see if you herx.
and BUGG, yes, your post helped me. I have the rib cage stiffness and was wondering if it was something else besides BABS like perhaps Bart.
I have tested POS in the past for Babs, relapsed, and never thought of Babs since I never had the night sweats either in the past.
Now with treatment, Malarone, Cowden, and just added Zhang's Artemesaie (sp) 2 weeks ago, I am starting to see an improvement in the rib stiffness.
I did have a horrible herx too where I woke up soaking wet, shaking and felt like I had no blood pressure.
I went to my local doctor and he sent me to the hospital for blood work because I had a low grade fever and my blood pressure was quite low.
I also had abdominal pain in the spleen area.
I have had many Babs test since relapse and have not re-tested POS. I have yet to try FRY labs yet due to cost. I am pretty convinced Babs is my problem.
I was treated for Bart initially due to swollen lymph nodes even though I did not test POS. I was treated with Avelox and Doxy. I also had Sulphur at one point too.
Helped, but still had issues. I always thought Babs was more sweats, high temps etc., but now know that it can be much more invasive.
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