Lyme results confusion

[Rlman]

I experimented with Doxycycline and Aldactone to try to combat the EBV and had sudden and dramatic improvements in cognitive symptoms. When I reported this to the immunologist at the follow-up visit to clinic, she disapproved of my experimenting but, like me, she was suspicious of an issue with bacterial infection. Another blood test revealed positive IgM values for Lyme.

Paul

Hey Paul were the antibiotics prescribed to you or did you buy them without prescription? if so how/where? Thanks!

 

[pcmenten]

So pleased for you. Hopefully your improvements continue
How is your body trmperature now?

Oral temperature remains 96.1 and below.

 

[pcmenten]

Hey Paul were the antibiotics prescribed to you or did you buy them without prescription? if so how/where? Thanks!

Initially, I had ordered Sprironolactone and Doxycycline via an online pharmacy in India. I've forgotten exactly which one. Thankfully, they don't require a prescription. After I discussed the results with my care provider, she admonished me not to experiment, but agreed to test me for Lyme.

 

[pcmenten]

I had a follow-up with my care provider and she has discontinued the Doxycycline but continued with the Valtrex. The intent is to see how I fare, and to retest me after six weeks off the antibiotics to see if titers for Lyme continue.

It's been a week and I'm having a return of fevers, and nausea and vertigo. Fatigue has returned, too. Good times!

My fear is the return of the full-blown cognitive symptoms.

 

[pcmenten]

Logging my impressions has been useful.

Cognitive symptoms have returned; difficulty focusing, weak memory, mood issues. I'll continue with the currently prescribed therapies for another 3-4 weeks and get retested for lyme to see what's changed.

Edit: update with more observations; I felt malaise and fatigue over the weekend. Sunday, while cleaning up the branches and logs from a tree in my backyard, I felt light-headed several times. Lots of sleeping and waking up tired. Most days I wake up tired regardless of the amount of time spent in bed.

 

[Mel9]

I had a follow-up with my care provider and she has discontinued the Doxycycline but continued with the Valtrex. The intent is to see how I fare, and to retest me after six weeks off the antibiotics to see if titers for Lyme continue.

It's been a week and I'm having a return of fevers, and nausea and vertigo. Fatigue has returned, too. Good times!

My fear is the return of the full-blown cognitive symptoms.

Does your 'care provider' know what she is doing?

 

[Mel9]

Time to find a Lyme Literate (LL)doctor

 

[pcmenten]

Hi Mel,

No, but as long as I get to participate in the diagnosis and treatment decisions, I'm willing to keep working with her.

Getting proper care, even getting the honest attention of a qualified care provider is a problem, isn't it? I don't think the Portland, OR area has very many providers with experience with Lyme, ME/CFS and associated conditions. My hope is that my provider and I can get up to speed on whatever it is that's going on with me.

She takes this seriously and it was her clinic that made the discovery of reactivated EBV, so I have more confidence in them that I have in Vancouver Clinic, PeaceHealth, and the other clinics I have been to. If I have to be a guinea pig while we work out how to diagnose and treat whatever is going on with me, that will be okay for now. If we succeed, then we can add her to the list of experienced providers in my area. Seems worthwhile.

Paul M.

 

[pcmenten]

Hi Mel, last I checked it was 97, which is where I'd want it to be.

I had been feeling malaise and brain fog after eating and sought a treatment for that. I'm trying some remedies for candida and I'm already feeling better.

 

[the_phscale]

Hi Mel,

No, but as long as I get to participate in the diagnosis and treatment decisions, I'm willing to keep working with her.

Getting proper care, even getting the honest attention of a qualified care provider is a problem, isn't it? I don't think the Portland, OR area has very many providers with experience with Lyme, ME/CFS and associated conditions. My hope is that my provider and I can get up to speed on whatever it is that's going on with me.

She takes this seriously and it was her clinic that made the discovery of reactivated EBV, so I have more confidence in them that I have in Vancouver Clinic, PeaceHealth, and the other clinics I have been to. If I have to be a guinea pig while we work out how to diagnose and treat whatever is going on with me, that will be okay for now. If we succeed, then we can add her to the list of experienced providers in my area. Seems worthwhile.

Hi Paul,

I know that you posted about your IgG versus IgM results some time ago, but if you're still interested I can shed some light on that. I had similar results, and my physician explained that one of them (although I'm afraid I can't remember which one is which!) is an indicator of an active or newer infection, and the other is indicative that the infection occurred multiple months previously. It doesn't really change anything, but for me it helps when I'm explaining my diagnosis to friends/family.

I'm glad that your co-infections seem to be alright. I've been diagnosed with babesia and bartonella, but interestingly I also tested positive for a whole slew of other things: salmonella, EBV, pneumonia, some auto-immune indicators....
We theorize that I was exposed to these things at some point when my immune system was fully functional, and so I did not present with symptoms (except of pneumonia, which did lay me out for a few weeks when I was younger). Then something- either the tick bite and subsequent introduction of lyme, or a previously undiagnosed genetic component that came into play- weakened my immune system to the point where the lyme infection was allowed to do its thing.

I'm interested to note that you live in Portland- that's where I believe I was infected! We can't ever know for sure because it took a year after onset of symptom for us to come close to diagnosis, but I started getting sick about a month after I was in Portland on spring break.

 

[pcmenten]

Hi pH,

That's very kind of you to help me understand the results. Thanks.

Yes, I live in the Portland, Oregon area and I've done lots of hiking in this area. I also grew up in, and still sometimes visit southwest Connecticut, not far from Old Lyme, Connecticut. And last year I spent three weeks camping in the Grand Canyon. No telling where I picked up a tick-borne disease.

Paul

 

[pcmenten]

Another update; I returned to clinic to get retested for EBV and HHV6. I had finished a one-month course of antibiotics (doxycycline) about two months ago. Most symptoms have returned, although the severity of POTS is much less this time. I'm sick. I was written up at work for poor performance, so it's time to get serious.

My EBV EA titers are slightly higher; about 40 against a reference of 11.0
My HHV6 IgG titers have doubled from 10 to 20 against a reference of 1.0

My doctor put me back on doxycycline and Valtrex. It took me a week before I started to feel better and it's not consistent. I'm also trying to deal with a presumed Candida issue with my gut. Good times.

 

[Mel9]

Another update; I returned to clinic to get retested for EBV and HHV6. I had finished a one-month course of antibiotics (doxycycline) about two months ago. Most symptoms have returned, although the severity of POTS is much less this time. I'm sick. I was written up at work for poor performance, so it's time to get serious.

My EBV EA titers are slightly higher; about 40 against a reference of 11.0
My HHV6 IgG titers have doubled from 10 to 20 against a reference of 1.0

My doctor put me back on doxycycline and Valtrex. It took me a week before I started to feel better and it's not consistent. I'm also trying to deal with a presumed Candida issue with my gut. Good times.

I feel for you! This was my pattern for 4 years
My doctor thought I had the normalbacterial infections
(Sinuses, throat etc) so gave short term antibiotics

I Would feel ok for a week and then go back to the worst again soon after the antibiotics script was finished.

then I would start another course of antibiotics and would quicky feel better again.

It was a nightmare.

 

[pcmenten]

Update: I had taken a one-month course of Doxycycline with Valtrex back in the March timeframe. The doctor discontinued the medication with a plan to re-test in two months. My health declined, especially fatigue and cognitive symptoms. I was restarted on Doxycycline June 28.

It took more than two weeks to feel any improvements. I began to take the Doxycycline more often, three and sometimes four times a day, on an empty stomach. I began to feel an improvement in symptoms late last week and this week the cognitive symptoms have especially improved. I have also resumed antivirals.

Retesting my viral titers for EBV and HHV6 in late June showed an increase in levels. Retesting last week (three weeks after the prior test) is showing a very clear drop in HHV6 IgG and EBV EA and EBV NA.

I am also using Saccharomyces boulardii yeast to stabilize my gut.

My temperature is now about 97.1 F.

The proposed plan for next month is to switch to minocycline because if its anti-inflammatory properties.

 

[Research 1st]

To the North Americans posting above me, are you prescribed these medications on the basis of 'official' 2-tier FDA approved positive antibody results to Borrelia (ELISA/WB method), or do they accept your private lab results like from Igenex?

Also did you have a Bullseye rash initially? In the UK, unless you have evidence of both, no one accepts Lyme disease exists in chronic forms, even if the patient now has consequences of untreated Borrelia infection!

 

[edawg81]

To @Research 1st

In the US a LLMD will treat with or without a positive diagnostic test. It's very controversial, but has clearly helped some people but not others.

http://www.ilads.org

I hope that answers your question.

 

[drob31]

What tests do you use for Lyme, Igenix ?