New Test can detect Among a Vast Range of Infections

[Learner1]

Thank you for sharing your story. I hope treatment will help tremendously.

There are 3 recently published case studies on HHV7 encephalitis which seemed to have resolved with IVIG and acyclovir.

Additionally, the attached document from.the Mayo proceedings discusses HHV7 in detail and says that though acyclovir, ganciclovir, and valganciclovir can be used, cidofovir and foscarnet may be better and artesunate/artemisinin may be useful (I gave Dr K an article on artesunate a while back...)

Hope you get the IVIG approved fast!

 

[Sidny]

@GlassHouse
Thank you for returning to fill us in.
Sorry to hear about the hospitalizations, must have been rough. Great news though that you managed to identify and narrow it down to a single pathogen in TISSUES and CSF, I think those are very significant areas where the average patient doesn't usually test for infection.

Do you mind sharing with us what the cost of the UCSF CSF test was?

 

[Navid]

@GlassHouse

Curious, who ordered the DeRisi testing for you Dr. Peterson or Dr. Kaufman? I've been wanting to get tested by this Lab for years, but I think it is only recent that the test became available to a commercial clientele....although I'm sure still very highly restricted. You can PM me if you prefer.

Congrats on finding a cause for your problems (hopefully). Good luck in getting approved for IVIG.

I appreciate any info you can provide.

Thanks.

 

[overtheedge]

@GlassHouse
Did the colonoscopy find anything else besides the virus?

 

[junkcrap50]

"2 people I know have already had this done last week still awaiting results"

one has a CFS diagnosis , other had undiagnosed neuro symptoms

Any update on these patient's lab results? Have you heard from them?

 

[Gingergrrl]

@GlassHouse I am so glad that your persistence has paid off and I think of you often and hoped that you were doing okay. I am so glad you were able to get that test and figure out what is going on. I am praying that IVIG will be approved in combination with the right anti-virals and you will get your life back. Your story has been very inspirational.

 

[GlassHouse]

@Hip and @Learner1 thank you for the info on the antivirals.

Foscarnet and Artesunate didn’t come up when I talked to Dr Peterson and Kaufman. I’m not sure why. Maybe they don’t have as much experience with them?

I do remember seeing on the HHV6 website that (Val)Ganciclovir was only “moderately” effective while other drugs were ranked “excellent.”

Dr. K wanted me to try Valcyte over Vistide because he felt there were fewer severe side effects (liver or kidney problems). But we would discuss other drugs if I couldn’t tolerate it or it wasn’t working.

I plan to talk to both of them about what drug I should try next. I’m not sure how long I should stick with Valcyte but it would be good to have a plan in place now.

Most encephalitis cases I’ve read about showed improvement around 30 days into treatment but those were all people in the acute early stage of infection. My high fever and initial infection was 7 years ago and the virus has been active ever since so I’m not sure how to apply that information to my case.

 

[GlassHouse]

@Sidny thank you so much!

It’s a bit confusing. I paid $5k for my spinal fluid to be sent to Dr Lipkin to be run through his VirCapSeq-VERT test, which is similar to the DeRisi one. I’d asked Dr P if he could please convince Dr Lipkin to run my sample at cost as a favor to him since they work together sometimes.

I also signed papers to allow my CSF to be used for the DeRisi study. I try to participate in as many ME/CFS trials as I can. There is a research section of Dr P’s office where researchers coordinate to use his patients’ blood/ CSF etc with patient permission.

The DeRisi result came back positive for the HHV7.

Dr Lipkin has been extremely busy so it has been about a year and I don’t have results from him. I believe the sample is still on track to be run but I no longer need it as confirmation of the DeRisi test because the viral cultures from my colonoscopy/ endoscopy have confirmed it.

So I paid for one test that hasn’t been run yet but got another test for free (I think grant money paid it). I believe they’re both around the same cost. The test seems to only be available to patients of certain ME/CFS doctors.

The cost was very high and I’d been told someone before me did it and it was completely negative. But it would have been useful to me either way. Neither doctor could properly treat me because it was unclear if I had brain damage from a past infection or if I had an active brain infection. So anything that suppresses the immune system would be very dangerous in my case.

If it had been negative then I may have perused Rituxin after IVIG.

 

[GlassHouse]

@Navid the DeRisi lab recruited patients through Dr Peterson. I had my spinal tap done through my testing with Dr P and then most of the autoimmune-related tests done with Dr K.

I really wish they could make the test widely available. I was tested for so many individual viruses using my spinal fluid and was negative for all (HHV6, West Nile, Japanese encephalitis, powassan virus) so we’d never have landed on hhv7 without this test.

Maybe try emailing the DeRisi lab and see if you can participate in a study? I never actually spoke to them since everything went though Dr P’s office.

 

[GlassHouse]

@overtheedge no, everything else on the colonoscopy looked normal. The colitis that was caused by the c diff had already resolved from taking Dificid. The only visual abnormality was gastritis seen on the endoscopy.

For viral culture they tested for CMV and HHV7 through Viracore and the HHV7 DNA was detected in all samples.

@Gingergrrl im so sorry it’s been so long! I need to write you a letter to catch up You have helped me so much, I don’t think I’d have been able to come this far in my medical journey without you!

 

[Gingergrrl]

Dr. K wanted me to try Valcyte over Vistide because he felt there were fewer severe side effects (liver or kidney problems). But we would discuss other drugs if I couldn’t tolerate it or it wasn’t working.

That makes sense that he would want to start with the one that has the lesser risk of side effects or potential liver or kidney problems. But I know he will figure out the right one for you (along with Dr. P and your other doctors).

@Gingergrrl im so sorry it’s been so long! I need to write you a letter to catch up You have helped me so much, I don’t think I’d have been able to come this far in my medical journey without you!

Please do not worry about writing to me and I am currently so behind again on replying to PM's and e-mails that it is ridiculous. I am so happy to read your update and that your doctors have finally figured out that it was HHV-7 that is the culprit so you can find it and kick it's ass. I am so glad that I was able to help in the beginning of your journey but you are an amazing advocate and have really inspired me. We will catch up some day in the future like no time has passed and do not even give it a second thought

 

[Hip]

@GlassHouse, my own ME/CFS started with a suspected viral encephalitis, probably from coxsackievirus B4 (no good antivirals for this). So you are not alone with this experience.

My main problem was horrible mental health symptoms after this infection, such as moderate to severe generalized anxiety disorder, which I put down to ongoing brain inflammation that went on for many years.

When I tried supplements like N-acetyl-glucosamine and turmeric that reduced brain inflammation, this noticeable improved my anxiety levels. I have a thread about that here.