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Posted 5/21/2015 6:47 PM (GMT 0)
Hi:
How are the lyme co-infections even diagnosed? I had some tested at Igenex years ago when this all started back in 2007. For B. Henselase, B. microti, A. phagocytophilum, B. Duncani and E. Chaffeensis. These are the things Igenex tested me for. I think they were all negative if I am reading these correctly. Very old reports, I know. Haven't seen the point in having anything retested and spending all that money, since I haven't done treatment.

Is Igenex the way people are finding out if they have co-infections? What about Bartonella? I had a test done by Fry lab for that years ago, but my LLMD thinks it was a bogus test. It was positive.
Any words of wisdom or information any of you can give me about co-infection diagnosis? When you read about the symptoms of them all, there are so many over lapping symptoms… I don't have faith in what I do or don't have based on my symptoms alone, although I do have MANY of the Bartonella symptoms.
Thanks… I am preparing to start lyme treatment after 8 years of suffering and only getting worse. I have spent so much money already and have been through three LLMDs. There are MANY things I can't take as I have Interstitial Cystitis and herbs etc flare up my bladder. Really rough to find something I can tolerate, as my body is so sensitive.
Posted 5/21/2015 6:56 PM (GMT 0)
Hi Peace....

Igenex does offer co-infection testing...but they are even more unreliable then the test for Lyme.
A lot of Docs go by symptoms, and how you respond to treatment. Sometimes it's a trial and error approach.

For me, we've been treating lyme for several months now...and I still have many symptoms left...some definitely point to bartonella...so the plan is to switch to bart meds and see how I do.

I know Fry lab is used for the Protomyxzoa (sp?) - FL 1953.
I think you should find out if you tested positive for FL1953 - or what else it was.

Some Docs will start treating bartonella right away - if you have predominantly bart symptoms.
It all depends on the Dr.

Bartonella usually does not come without lyme disease.
Whatever you have - I wouldn't stall anymore on treating.
You've been through three LLMD's. Did you not like any of the three?
Posted 5/21/2015 7:01 PM (GMT 0)
Oh goodness - pardon my bad manners - I forgot to welcome you to the forum!

Lots of knowledgeable people on this forum...and support-a-plenty.

When you have a moment, please take a look at the thread at the top of the page titled: "New to Lyme?..Start Here" Full of great information...including the section on detox. Employing several detox methods will help you when treating for lyme disease.

A couple easy ones:
Drinking lots of water - and squeezing the juice of lemons into some of the glasses.
Warm epsom salt baths.
Dry brushing your skin before the baths
light exercise
Posted 5/21/2015 7:14 PM (GMT 0)
Thanks. I am not new to Lyme. As I said, I have been sick since 2007. Symptoms in various body parts that no "specialist" could make sense of. Yes, I saw the first 2 LLMDs who I didn't care for. Then the 3rd one was at a center where they treat Lyme, but he moved away, so now I guess I actually have a 4th one. I have been seeing him for about 3 years.
I haven't done treatment because:
1. I haven't really been sick enough to motivate me to do antibiotics
2. Every herb I have tried has made my bladder kill
When bladder problems are one of your main symptoms, it really limits what you can do and take. My LLMD is now pushing of IV antibiotics, but I am terrified, with good reason I think. I don't really know what to do at this point. I seem to be getting worse with new things cropping up. I am toying with doing IV Colloidal Silver and Rife machine… but I don't want to pic line and to get the needed amounts of silver, he said I would probably need one. I just want to do an Hep Lock…I have taken lots of oral antibiotics, but they never helped or I couldn't stay on them long enough due to gut pain despite probiotics.
Anyway, my life is no fun right now and I am pretty severely depressed. I know about all the treatments, even have read the entire Buhner protocol, but they just mess up my bladder too much. Very tough situation I am in. Thanks.
Posted 5/21/2015 7:53 PM (GMT 0)
So sorry to hear that your body is having such a hard time handling treatment. I've had the same confusion about coinfections as you at first. I've never been tested by IGenex. I do get tested every 3 months and have been sick for 3 years. I've had some bands come up on the Western Blot, but just 1-2 at a time or none. It took more than a year before I tested positive for Bartonella. Even though I thought I had Bartonella for quite a long time before that. The symptoms that especially made alarms go off was the heel pain I had in the mornings. As time went on, my Dr. Slowly started prescribing more and more meds that would address parasites. I think he was thinking I also have Babesia. Even though I haven't tested positive for it. I was also thinking that my symptoms were pointing to Babesia. The air hunger and drenching night sweats just wouldn't let up. So this is how we came to the conclusion of what infections I have.

I hope you and your Dr. Can figure out what infections you're dealing with.
Posted 5/21/2015 8:12 PM (GMT 0)
Peace Please,

I agree that co-infection testing is not reliable when you get a negative result. However, I don't know why any LLMD would say you could not rely on a positive test from Fry labs. I have not heard negative things about the lab. Maybe the doctor was not ILADS trained.

In fact, Protomyxzoa Rheumatica, also know as the Fry bug or FL 1953 as Girlie mentioned, can cause bladder issues. So can Bartonella. Check out:

http://protomyxzoa.org/wp-content/uploads/2013/05/Protomyxzoa_rheumatica.pdf

Your bladder issues while treating might have a been herx reaction. You should talk to an LLMD you trust about these issues. We can help you find another doctor if you would like.

You can also do searches here on bladder issues. There are a number of helpful threads.
Posted 5/21/2015 8:57 PM (GMT 0)
Thank you. Wow, I have a LOT of the symptoms of Protomxzoa Rheumatica. Does Fry currently test for this? The Fry test I had for Bartonella was a picture I think of red blood cells showing black dots on them. I was told the dots indicated Bartonella. My LLMD is EXTREMELY well known in ILADS and is often a keynote speaker etc. When I had the Fry lab test done, it was years ago, and with a different LLMD. It is my current LLMD who mentioned that the test isn't very reliable.
I am going to ask him about the test for the P. Rhuematica. It matches many, thought not all, of my symptoms. This is the first I have heard of it.
I have to say that I am skeptical about Lyme, LLMDs, IV antibiotics etc in general. I tend to be a skeptic, but since there is no other way to explain all my crazy and PAINFUL symptoms, I don't know what else to turn to, but Lyme. My Igenex results were more or less indeterminate. I know my current LLMD had me take a test which shows the inflammatory response to Lyme, and mine was off the chart. I can't recall the exact name of the test.
Anyway, I will ask him about this infection. If you want to PMessage me, and if you live in the Bay Area like I do, I would love to talk shop about different LLMDs with you. I have seen three of the most popular ones in the Bay Area over the years.
Thanks
Posted 5/21/2015 11:51 PM (GMT 0)
Fry does currently test for Protomyxzoa Rheumatica. The symptoms do overlap with Bartonella and Babesia quite a bit.

Multiple co-infections can really suppress an immune system. That could be the reason your IGENEX Lyme test came back indeterminate. As you know, that does not mean you don't have Lyme. Lyme and co was the only thing that explained all my crazy symptoms too. And it frequently is. It was also the only thing for which I tested positive. I'm sorry you're having such a rough time.

I'm somewhat near the Bay Area. However, my LLMD is is Southern California. Feel free to email me. I am familiar with a number of the Bay Area docs.
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