Lyme results confusion

[pcmenten]

I've searched this site and read many other posts. There are quite a few very helpful links, but I'm still baffled.

My history;

I recently acquired the HSV1 virus, although it was externally asymptomatic. I tested negative in 2015 and positive in 2016 with both IgG and IgM levels well above reference. Because I wasn't recovering well, I returned to clinic for more meds. I was then tested and found to have an ongoing EBV and HHV6 reactivation. The numbers seemed crazy high.

Before my follow-up with the provider, I tried self-medicating (including doxycycline) and saw a sudden improvement. I reported this to my provider and after getting a lecture about my experimenting, she sent me for yet another blood test; Lyme.

Results showed positive for;
(Western blot)

IgG 23
IgG 41
(labeled as Negative interpretation for Lyme)

IgM 23
IgM 39
(labeled as Positive interpretation for Lyme)

How can I have positive IgM 39 but negative IgG 39?

And something I just read says that positive IgG/IgM 23 is definitive.

I'm screwed, right?

Paul

 

[duncan]

Short of a positive culture, nothing is definitive for Lyme.

Depending on who you talk to, your results could be suggestive of an active Lyme infection, or merely suggestive of a past exposure.

The IgM vs IgG call is based on a CDC algorithm.

 

[Diwi9]

I know very little about Lyme, but a new and more definitive test is on the way:

http://www.cnbc.com/2017/02/07/tech...tes-may-improve-testing-for-lyme-disease.html

 

[pcmenten]

I've been diagnosed with Lyme and my test results have been sent to the CDC. I'm on day two of 100mg x2 daily doxycycline. I'm also taking valtrex for EBV. My cognitive symptoms have improved but fevers continue.

BTW, I have had low body temperature for many years and only now to I have a potential explanation for why - Lyme disease. It seems to me that this should have been a red flag for PCPs. Unexplained fevers, cognitive deficits (mood, memory, and attention), fatigue, low body temperature.

The course of treatment is one month. I'll update with my impressions as this progresses.

Paul

 

[Diwi9]

@pcmenten - Wow, sounds like you have found some answers and possible treatment. Do please follow up on this thread and let us know how your treatment goes. Best wishes to you!!!

 

[dadouv47]

Are you sick since 2015? Glad u had a diagnosis sooner rather than later, but u should take care about taking antibiotics only for a month. It's usually far from enough for people being diagnosed a year or more after getting sick. Even if you feel better, you should probably take them more time to diminish the risk of relapses.

 

[pcmenten]

Thanks for that advice. Yes, I suspect that I've had this for quite a long time. Possibly for decades.

In the past, I had noticed how much better if felt taking certain antibiotics and wondered whether there was something else going on besides the sinus infection du jour. In hindsight, I'm guessing that the antibiotics were giving me a brief respite from the chronic Lyme infection.

The other tip-off should have been the constantly low body temperatures. There have been times when I'm donating blood and the health screener is trying to take my temp and wonders if the electronic thermometer is broken - my temperature was too low for it to read. When I'm otherwise healthy, it's not uncommon for my temperature to be below 96 degrees.

Edit: Just read my follow-up test results. Good news; negative for babesia.

 

[dadouv47]

Thanks for that advice. Yes, I suspect that I've had this for quite a long time. Possibly for decades.

In the past, I had noticed how much better if felt taking certain antibiotics and wondered whether there was something else going on besides the sinus infection du jour. In hindsight, I'm guessing that the antibiotics were giving me a brief respite from the chronic Lyme infection.

The other tip-off should have been the constantly low body temperatures. There have been times when I'm donating blood and the health screener is trying to take my temp and wonders if the electronic thermometer is broken - my temperature was too low for it to read. When I'm otherwise healthy, it's not uncommon for my temperature to be below 96 degrees.

Edit: Just read my follow-up test results. Good news; negative for babesia.

Good that u were still diagnosed soon enough ( not like my self after 7 years). But take care about not being treated for such a short time. Have you an ILADS Doctor for lyme?
Glad to hear that babesia is negative. U should also be aware by the fact that many co-infections like bartonella and babesia have high rates of false negatives. There's a new test that is going to be available soon (http://www.tickplex.com/ ). We hope it will be better for both lyme and co-infections.
Anyway, meanwhile glad u are on the right track

 

[pcmenten]

Thanks, Dadouv47. I'll be glad when diagnostics improve for Human Herpes Viruses, tick-borne diseases, and other chronic infections. The immunologist who is treating me tells me that there is a test called 16S RNA that will be able to not only accurately identify pathogen particles (instead of identifying antigens), it will be able to identify which strain of virus is found. That will be a good day.

I can't help feeling that we are crossing a cusp of improved diagnostics and hopefully improved therapies for chronic infections.

Meanwhile, it's 23 March 2017, and I continue to experience fevers, but my cognitive symptoms are still improved. Productivity has improved both at work and at home. I'm still sleeping a lot, and I still am experiencing significant fatigue.

Good luck to all.
Paul

 

[Mel9]

Yes

Thanks for that advice. Yes, I suspect that I've had this for quite a long time. Possibly for decades.

In the past, I had noticed how much better if felt taking certain antibiotics and wondered whether there was something else going on besides the sinus infection du jour. In hindsight, I'm guessing that the antibiotics were giving me a brief respite from the chronic Lyme infection.

The other tip-off should have been the constantly low body temperatures. There have been times when I'm donating blood and the health screener is trying to take my temp and wonders if the electronic thermometer is broken - my temperature was too low for it to read. When I'm otherwise healthy, it's not uncommon for my temperature to be below 96 degrees.

Edit: Just read my follow-up test results. Good news; negative for babesia.

, I also had very low temperature and always felt better with antibiotics. Now diagnosed with Borrelia and, After 4 years debilitating illness, steadily improving on long term antibiotics with weekly pulsing antibiotics and anti- biofilm medicine.

 

[valentinelynx]

After 4 years debilitating illness, steadily improving on long term antibiotics with weekly pulsing antibiotics and anti- biofilm medicine.

@Mel9, would you mind saying how long you were on antibiotics before you started to notice improvement?

 

[Mel9]

@Mel9, would you mind saying how long you were on antibiotics before you started to notice improvement?

Around a week after I started the full regime (2types of antibiotic plus anti-fungal) I lost the malaise. Then I started biofilm tablets and weekly 'pulsing' antibiotics and had severe Herx reactions but now, 9 months later, no more herxing. I am much better but not fully. I have been doing 20 min walks (carefully) without PEM. But if I overdo ithings I do get PEM still. I could live with this level of disability but still hopeful I might get well again one day.

 

[valentinelynx]

Around a week after I started the full regime (2types of antibiotic plus anti-fungal) I lost the malaise.

Were you on oral or IV antibiotics? (I was on orals for 2 years, and only got some improvement in joint pain). IV antibiotics for about 9 months now: I think I'm seeing improved energy. Definitely decreased muscle pain. Still a long way to go, though.

 

[Mel9]

Were you on oral or IV antibiotics? (I was on orals for 2 years, and only got some improvement in joint pain). IV antibiotics for about 9 months now: I think I'm seeing improved energy. Definitely decreased muscle pain. Still a long way to go, though.

Does it depend on which oral antibiotics perhaps? Mine were Clarithromycin (2 of 250mg, twice per day) and Zinnat ( same dosage as above). Then Biofilm Defence, gradually increasing depending on Herx, to one per day. I take a pulsing antibiotic once per week (Tinidazole, 4 of 500mg).

Also it may vary depending on different species and strains of Borrelia. Mine is Borrelia afzellii. I do not have co infections either so that might help.

I'm glad you are getting better on IV ab. It is a slow process but marvellous to get a response.

It will be good when the researchers find out more about how these sorts of long term infections lead to ME. I have a feeling that when the bacteria are finally vanquished, light to moderate ME/POTS may remain.

 

[Rlman]

hey Paul @pcmenten when you say your HSV1 was externally asymptomatic you mean that you had no symptoms of HSV1 but a blood test picked it up?

 

[pcmenten]

Hi Rlman,

I mean that my symptoms were sore throat, fatigue and malaise, and cognitive impairment. I did not have cold sores. Yes, blood tests, performed by the lab in Seattle that is best in class, showed negative antibodies for HSV1 and 2 in Nov 2015, but positive for HSV1 in Nov 2016 (both IgG and IgM). Still negative HSV2.

I experienced some relief of symptoms when I asked for an antiviral, but the PCP at the clinic suspected some other involvement and referred me to an immunity clinic. (Thanks God.) I was then tested and found positive for EBV (EA) and also HHV6.

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

 

[Rlman]

Thanks for the reply Paul. Smart idea to trial things i suppose when tests dont give all the answers. All the best! I am also freezing cold all the time, sleep with so many sweaters and duvets its really crazy. My western blot was negative but i read doesn't rule out lyme always.

 

[pcmenten]

An update: I'm nearing the end of the doxycycline x2 treatments (with other supplements). I've had improvements in cognitive symptoms (mood, memory, and focus), sleep, energy, and a reduction in the fevers.

Edit: late in the course of treatment I read the label on the side of the bottle of doxycycline that stated that it works best on an empty stomach. I had taken doxycycline on an empty stomach before and gotten sick to my stomach, so I was taking it with food.

I tried taking it on an empty stomach again and seemed to feel an improvement. It does cause stomach and bowel side effects; upset stomach and diarrhea, but considering the effects of Lyme Disease, it seems worth the discomfort.

I am also prescribed a biofilm remedy that disrupts the biofilm that bacteria can form. Additionally, I take saccharomyces boulardii to improve lower GI function and it works well.

 

[pcmenten]

Update: Fevers are gone, cognitive improvement remains, energy is improved. I'm not 100%, but at least I can remember what 100% feels like. I'm due to meet with my health care provider.

 

[Mel9]

S

Update: Fevers are gone, cognitive improvement remains, energy is improved. I'm not 100%, but at least I can remember what 100% feels like. I'm due to meet with my health care provider.

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