testing update

Bartonella,babesia,cmv all negative. Inflammatory markers high,vdrl syphilis negative,rpr syphilis negative,dark field microscopy syphilis negative.lyme titer positive,kd23 igm band on first western blot reactive. Waiting for second western blot to come back. hoping cleveland clinic doctor will agree to fta-abs syphilis blood test & spinal tap to completely rule out syphilis & other infections. Also clean mri. Clean ekg. Clean ct. Clean pt. Clean ana.

Starlette:
What makes you think you might have syphillis? If all the tests were negative for it and you had some positives for lyme I would think you would have Lyme.
what are your symptoms?

What symptoms, if any, make you think you might have syphilis? Did you have any symptoms from the first few stages?

Do you have an LLMD? If so, what does he or she think?

Lyme girl I have been exhaustively searching the internet for that answer. I cannot find it anywhere. No reputable n medical site has anything on it.

Band 41 would be the most likely to cross react with Syphilis, S. Pallidum.

Here is a link discussing cross reactivity with Lyme. Band 23 is not one of them.

http://www.lymeneteurope.org/forum/viewtopic.php?f=5&t=1686

Unless you have had symptoms from the first few stages of syphilis, it is not very likely that you have it. It is much more likely that you have Lyme, but you need to get diagnosed by an LLMD.

I think you're stressing yourself out for no reason-unless you have reasons you're not sharing with us-such as having symptoms or some reason to specifically think you have Syphilis. Cheating alone is not reason enough. If your ex had syphilis or he slept with someone who had syphilis, that would be a concern.

Try not to stress. Talk to your doc. Hopefully, you're seeing an LLMD. I would not be concerned about Band 23 being related to syphilis. I hope this helps. This can be scary, but try not to stress.

I'm sorry you're going through all this. You have to keep fighting. It is a battle to get diagnosed. You will get there! Persistence will pay off. I know it is not easy. You're doing great! Just keep it up!

If your regular dr is bad, you should find someone else. I had to fire my first PCP I went to after everything exploded. I was in bad shape. He had no idea what was wrong. After he left it up to me to figure out, I suggested that I might have Bartonella. He completely wigged out on me. After that, I found a new doctor and, ultimately, an LLMD. Now, I'm treating. It is hard. You're doing great!

Is there another LLMD in your area who can see you sooner? If your symptoms are that bad, I would try to get in to see another LLMD. Keep calling Dr. J as well to check for cancellations.

I'm going to literally beg the Cleveland doctor for the fta syphilis test plus spinal tap & go through the other various examination/testing. If nothing else shows then it is the lyme. I'm going to tell them what I believe is the right treatment which is iv antibiotics in hospital for the first week to be monitored in case of a big herx reaction. If they refuse that & everything else imaginable is ruled out I'm going to be forced to take the 14 days of the antibiotic along with pain medication & try not to drop before june.

Starlette:

I really don't think you have Syphilis. All your tests were negative. I would not recommend a spinal tap either. Eye and heart problems are common with Syphilis but correct me if I am wrong, I don't think muscle and joint pains are a symptom of late stage S.

Starlette,

Try not to stress! It is going to be okay. You're going to get the treatment you need to get better. You just have to keep working on getting in to see an LLMD.

Your symptoms really do seem Lyme and Co-Infection related. I know you're scared. Most people don't die from Lyme. You're going to get the treatment you need. I have chest pain, shortness of breath, palpitations, severe abdominal cramps, muscle pain, anxiety and panic attacks and other symptoms. I have Bartonella and Babesia. Bart can cause abdominal cramps and chostochondritis, which might possibly cause chest pains. Babesia can cause shortness of breath, heart related issues, as well as anxiety and panic attacks. Your symptoms seem to fit the broader picture of Lyme and Co. You just need to get diagnosed and treated. All your syphilis tests have come back negative. Although that is not conclusive, your symptoms seem to fit Lyme and Co. It is more likely that you have Lyme and Co.

It IS going to be okay! Just continue to work on getting in to see an LLMD. Try not to stress! Focus on detoxing and getting ready for your LLMD appointment. Hang in there! We're here for you. Try not to be scared! It won't do any good. Hugs!

Anytime Starlette! You can't rely on negative tests for co-infections. Co-infections are even harder to test for than Lyme, especially with a regular lab, such as Quest or LabCorp.

An LLMD can diagnose you based on clinical symptoms. The LLMD may want to test you for co-infections through a different lab, such as IGENEX, Fry or Galaxy Labs. I don't know which lab you used for co-infections. I tested negative for co-infections though Quest. My LLMD clinically diagnosed me with Bart and Babs.

Hang in there. Start detoxing and learn as much as you can about Lyme and Co. Ask lots of questions here. We have so many knowledgeable members here who can help you. Most importantly, don't be afraid! You'll be okay. :)

My second regular lab western blot came back all nonreactive except kd23 igm band again. No Coinfections were positive as I said. I'm so sick & confused. I'm just going to curl up & cry for a while. I'm sorry guys. I'm not strong enough to deal with this like you all are.

starlette - I have cried rivers of tears...during the past two years...you're not alone. It does get better, ....you ARE strong enough...
I cried every day for about 5 of 6 months when I did not know what was wrong with me...often twice a day. I was even hysterical sometimes....I know how you're feeling. Scouring the internet...to try to get an answer. The worry, the fear..the uncertainty.
But, it DOES get better ...with treatment and time.
Just hang on until your appointment in June. That's two months - you can do it. In the meantime, detox, get plenty of rest...and keep coming to the forum for support.
We understand how you're feeling.

Big hugs to you!!!

No you are not cluttering the board - you are in need of support and doing what we want you to do!! Trying to let us know that you need some extra support right now!! Not everyone is alone like you, although we do have quite a few that live alone. So please don't worry about that!!

I felt the same way, hubby was sooo skeptical of my diagnosis since not one doctor would or could confirm it with blood tests - until I had 12 months of abx treatment, then I got a positive blood test - but that's unusual from what I've seen. I just meant to say that I can certainly related to those feelings of abandonment by one's family. It's terrible, but it's not necessarily going to stay that way!!

I can't find anything on the Cleveland Clinic to let me know if they are pro chronic Lyme or not. Do you know what their stance on chronic Lyme is? If they only believe in PTLDS (Post Treatment Lyme Disease Syndrome) instead of chronic Lyme, then you will likely not find any answers there - just so you know.

But no matter, because you can take the answers that you do get from there and add them to the information that you already have and have more answers!!