Looking for a PTLDS doctor - will travel!

Hello!

I am in Oregon and was treated for Lyme Disease from 2002-2010. When I discontinued treatment, things were so much better and, while I could no longer remember my life, pre-Lyme, I was well enough and happy enough to feel content, stop treatment, and move on. My doctor - a well-respected physician in Boston and Falmouth - continued my treatment for 6 months after I believed I quit improving. This was his calculus: at the point where I no longer felt like I was improving (which was easily 6 months after I had seen any noticeable improvement anyway), we kept going for 6 more months just to be as sure as possible. Though he only treated me from 2007-2010, his was the treatment course that worked and I continue to feel so grateful for him.

Sadly, he has recently retired. In 2012, when I became pregnant, things started to go a little haywire, but then in 2014, during the pregnancy with my second child, my systems just kind of started to fall apart. At this point, I am in worse shape than I was at my sickest. I have a range of symptoms that I never had before, and the ones I recognize are actually more severe! I am SHOCKED to be in this place again, and so startled to be needing a physician so badly.

I would be shocked if I had any kind of active infection. It seems like a severe PTLDS is more likely. I have been to enough physicians to know that, if I end up with the wrong one, they will conclude that I must still have an active infection and want to resume treatment. I REALLY need a cool, calculated medical head who can evaluate my case without jumping to conclusions, and who is willing and able to distinguish between needing active infection treatment and the phenomenon of severe post-treatment disorders. I can resume treatment if necessary, but I just don't want to rush to that outcome.

I have a referral with a doctor at a research center in Maryland, but would DEEPLY appreciate any other suggestions. Feel free to e-mail my personal address attached to my profile.

On a side note, it has taken me months to find this site! I am just not good at this kind of thing, but this whole research time, I have been thinking: "if I could just find an online community! Someone out there will know something!" I feel giddy to be here now, and hope someone knows or has heard something about PTLDS evaluation and treatment.

Welcome mlcjkc!

Sorry for the reason you're here but glad you found us.

Girlie could very well be onto something. ILADS (International Lyme and Associated Diseases Society) recommends treating two months past complete symptoms resolution.

And, as she questioned, it's entirely possible that a coinfection prevented your full healing. That could explain the new symptoms - the severity of which could be explained by coinfections.

Healthy people are walking around with asymptomatic Babesia and Bartonella infections. Even the CDC acknowledges this on their website:

www.cdc.gov/parasites/babesiosis/

"Although many people who are infected with Babesia do not have symptoms, for those who do effective treatment is available."

www.cdc.gov/bartonella/clinicians/index.html

"Most cases of cat scratch disease (CSD) resolve without treatment", although some patients may develop complications from disseminated disease.

Cat scratch disease is the henselae strain of Bartonella which is a common coinfection to Lyme. Actually, researchers and savvy doctors are now saying that Bartonella is so prevalent that Lyme should be considered the coinfection.

If healthy people can have no symptoms of Babesia or Bartonella and still be infected, it's entirely possible that those of us dealing with any of these infections could also be infected with Babesia and/or Bartonella....and not necessarily have any symptoms...or have mild symptoms...or just one symptom (mild or not)

Leaving any coinfections untreated can impede healing from Lyme and vice versa.

You'd be best served by seeing a LLMD (Lyme literate MD) and preferably one trained by ILADS. You could find one in your area by using the physician referral feature on their site:

ilads.org/ilads_media/physician-referral/

I fear any other doctor will discount the possibility of chronic Lyme (there is no such thing as PTLDS - that has been confirmed in countless studies that identified the existence of persisters)

There's a huge political battle going on now about Lyme and the patients are losing unfortunately. It's because of the belief in PTLDS that people are undertreated and left suffering.

Here's a link to a really good thread on here that addresses this topic:

www.healingwell.com/community/default.aspx?f=30&m=3530811

Best wishes to you moving forward!

Thank you both so much for your help. You both give thoughtful responses and important things to think about. I really appreciate that. :)

I think the referal is to the fact that rather than symptoms caused by the damage that Lyme has caused, that you have an infection that was never really cleared. Thus the symptoms are not 'post Lyme', but actually an active chronic infection. Many docs will label that PTLDS, when instead it is actually Chronic Lyme, that the same doctors will argue doesn't exist, therfore rather than continue to treat the infection, until after the symptoms are gone (and beyond, to make certain) people are told 'that's as good as it gets' and left to suffer.

I hope that makes sense??

The term PTLDS makes me angry. This term is often used when patients aren't symptom free after a short course (as little as 2-4 weeks) of antibiotic treatment. Instead of properly treating patients, this term was developed.

If you were to have perhaps something leftover - maybe one thing- like arthritis in some joints...that showed up on an X-ray....maybe there's a case for residual damage.

But, to have several unresolved symptoms is not leftover damage.

"....my systems just kind of started to fall apart. At this point, I am in worse shape than I was at my sickest. I have a range of symptoms that I never had before, and the ones I recognize are actually more severe!"

What you describe is not residual damage. Residual damage wouldn't produce new symptoms...and cause the sudden worsening of your other symptoms.
Active infection would, though.

Have you had your baby tested?...that may tell you something..wow you treated for 8 years?...there are other options besides abx

I wonder; have any of you on this thread read and viewed Dr. Garth Nicholsens research on how mycoplasmas, CPn, and HHV6 when together they actually create a mutated cellular scenario that which is irreversible. He' s the Molecular biologist that runs the Immed lab that researched into the cause of the Gulf War syndrome. He found that Gulf War syndrome patients,ALS, CFS, and Lyme patients ALL had the same combination of mycoplasmas and HHV6.

MY RN sister, diagnosd w/Lyme in 2008, after treatmemt for 6 years and STILL ill. She's now trying herbals. But Ive asked her to research the viral issue. Many people believe that Lyme causes the viruses to stay active or become re-activated; but WHAT IF the viruses 'feed' The Lyme? What IF Lymies arent getting better BECAUSE of all the HERPES viruses...

MY Lyme and co-infections keep coming back negative, but mycoplasma, hhv6, EBV, & CMV remain active HIGH-UHG!!!!!
Hhv6= reactivated rosiola virus
Hhv4=Chicken pox
Hhv3=Ebv
Hhv5=CMV