Best way to seek diagnosis and treatment

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
Post Reply
bertief
Posts: 1
Joined: Sun 10 Jan 2016 2:19

Best way to seek diagnosis and treatment

Post by bertief » Sun 10 Jan 2016 4:18

Hey - I was wondering if anyone would care to comment (ALL PREFACED by the understanding I know this isn't a substitute for proper medical advice)...

I'm a 42 Brit who spends around half the year in urban Southern California and half the year on a sheep farm in the South of England.

In December 2014 on a trip to the US I had what I can only describe as 'metabolic crash'. I went from life-time peak physical condition with boundless energy and almost seemingly endless capacity to challenge myself physically and mentally, to an abrupt debilitated state.

The first stage of being 'ill' - included an unpleasant persistent sore throat and generally feeling lousy, followed by absolutely chronic inability to recover from any physical exertion. The sore throat got better after 12 weeks, but the fatigue was hideous and debilitating. Up to this point in my life I'd been 'ill' for a handful of days in my life.

For the first five months of 2014 I couldn't really do much due to overwhelming lack of energy. More scarily I started feeling dizzy, having intermittent eyesight issues, and massive mental fogginess. Being in bed or prone was almost all I could manage.

Basically my glib summary was to say that I'd gone almost overnight from being in life-time best form (feeling 21) to feeling 80+. I lost what I felt was 40 points off my IQ too.

I saw about a dozen different doctors who took every panel and test they could think of. Nothing stood out. I had an enlarged and tender spleen, but nothing that appeared to be specific. They certainly didn't offer anything medically valid as a diagnosis - let alone any kind of treatment options.

So I tried to carry on - hoping that what more than a couple of doctors suggested was 'post viral syndrome' would pass eventually.

I went through a long, slow up and down cycle of what I'd hoped to be recovery - but any recovery would be followed by strong intermittent exhaustion and fogginess.

It wasn't until the autumn when Lyme was gaining some popular notoriety in the UK, that I heard a high profile sufferer speak on the radio -- and what they said chimed so exactly with my symptoms. I rushed to get my blood tested at the same private lab they used in Germany. I understand now that in this forum that this particular lab has a 'mixed' reputation.

I'll supply the full panel to anyone who is interested, but According to the results I got back,
My blood panel (Leucocytes etc) showed no immune suppression

The Elispot showed a Borrelia burgdorferi Fully Antigen result of 3 (with ref fSI <2). This was marked as +
Borrelia b. OSP-Mix (OSPA/OSPC/DbpA) was marginally + (at 2 - with ref SI <2)
as was Borrelia burgdorferi LFA-1 (at 2 - with ref SI <2)

but the report also appeared to show
Marginal positive for Mycoplasma pneumoniae-IgG (EIA)
Chlamydia pneumoniae-EliSpot strong positive
EBV-VCA-IgG-antibodies and EBV-EBNA1-IgG-antibodies positive
EBV-EliSpot (lytic) and EBV-EliSpot (latent) strong positive
Coxsackie-Virus-IgG (IFT) and Coxsackie-Virus-IgA (IFT) strong positive

So immediately I went to see my NHS GP in the UK. I know I was bitten by a tick a long time ago, but I can think of no incident recently - nor did I show any kind of rash. I've lived on livestock farm for most of my life and used to regularly walk through grass with shorts on, so exposure to ticks was more than plausible.

My GP referred me without giving any kind of treatment to an Infectious diseases clinic in a teaching hospital, but I was told that they couldn't see me for 4 months. Finding any kind of decent, rational, informed medical options in the UK for Lyme seems hopeless.

At this stage I haven't had any kind of appropriate treatment, but a rheumatologist friend of mine independently ran a blood test in a London lab. All he would say is that the single test he ran was negative, without disclosing the specific type of test or result. He'd also discussed the german test with an ID specialist, who thought the testing the Germans did was essentially worthless.

So I'm now in a total limbo. Not sure who to believe, whether one or both of these tests are reporting falsely.

From my extensive reading - I'm pretty convinced I've been experiencing Lyme neuroborreliosis as nothing else appears to fit what's been going on, particularly with everything else coming back in normal ranges.

So update to now (Jan 16). I'm in Los Angeles for work. My neurological symptoms appear to have got much better. I still get intermittent fogginess, minor dizziness and significant bouts of fatigue. My IQ is recovered though - so I can actually work.

I'm also as physically strong as I was 13 months ago, but I have little ability to recover from any kind of exertion. I'm trying to get back in shape, but an inability to recover is a huge obstacle, as is the fatigue. I have to sleep for 12 hours if I exert myself anywhere near as hard as I used to. I have tried graded exercise therapy, which has been a modest success.

OK - so my key question is about potential confirmatory diagnosis for Lyme and any antibiotic treatment. I have no primary care doctor in LA. I was advised to go to the infectious diseases clinic at UCLA - but the paperwork alone as a foreigner seems onerous and pointless. I'm almost convinced that's going to be the most ridiculously expensive route to get IDSA treatment.

Maybe that's the best route?

Or would I be better seeing a so called 'LLMD' - perhaps referred from a list from ILADS?

Even without the variety of treatment protocols from one of the German Borreliosis Society, IDSA, ILADS - I'm confused about how to even be sure of getting the right labs ordered for this my third opinion. I only say this because there appears to be so much quackery and dubious testing out there.

So I have four significant questions -- If you were me:

(1) what testing protocols or type of lab tests would you seek out and order?

(2) how do I find the best advice on treatment here on the west coast of the US?

(3) If this is some kind of borreliosis that I have contracted in the UK (rather than the US), might this need an adjustment to any treatment protocol offered here in the US?

(4) Clearly if this is Lyme - I've been suffering for 13 months from a pernicious reaction, but patently it has not been as debilitating for me as some other people have experienced. Should I be concerned about this progressing to some form of 'late' lyme without treatment - given my immune system appears to have dealt with it to a certain extent. I now seem to have settled into an equilibrium where my metabolism hasn't recovered to my satisfaction, but I'm no longer 'disabled' by the disease.

What do you think?

thanks

User avatar
LHCTom
Posts: 341
Joined: Mon 22 Oct 2012 4:18

Re: Best way to seek diagnosis and treatment

Post by LHCTom » Mon 11 Jan 2016 4:14

Hey - I was wondering if anyone would care to comment (ALL PREFACED by the understanding I know this isn't a substitute for proper medical advice)...
I'm not a doctor but have been through something similar but longer and can give my thoughts but you need to provide more information.

What led you to think it was Lyme? There are many conditions with these symptoms. I've lived in a rural home among infected ticks for 25 years and was bitten many many times. I'm still not 100% sure its Lyme. Its not easy to confirm in many cases. The tests have many weaknesses createing both false positives and negatives. Have you had the obvious things that cause fatigue ruled out like EBV, Thyroid, autoimmune etc..? Do you recall a tick bite and rash and where did it happen? UK or S.CA?

Describe onset and symptoms, duration etc.. more carefully.

EBV or Epstein-Barr is the Herpes virus that causes mononucleosis that causes extreme fatigue. You need to look at this first.

The Elispot showed a Borrelia burgdorferi Fully Antigen result of 3 (with ref fSI <2). This was marked as +
Borrelia b. OSP-Mix (OSPA/OSPC/DbpA) was marginally + (at 2 - with ref SI <2)
as was Borrelia burgdorferi LFA-1 (at 2 - with ref SI <2)
.....
but the report also appeared to show
Marginal positive for Mycoplasma pneumoniae-IgG (EIA)
Chlamydia pneumoniae-EliSpot strong positive
EBV-VCA-IgG-antibodies and EBV-EBNA1-IgG-antibodies positive
EBV-EliSpot (lytic) and EBV-EliSpot (latent) strong positive
Coxsackie-Virus-IgG (IFT) and Coxsackie-Virus-IgA (IFT) strong positive

....

He'd also discussed the german test with an ID specialist, who thought the testing the Germans did was essentially worthless.

OK - so my key question is about potential confirmatory diagnosis for Lyme and any antibiotic treatment. I have no primary care doctor in LA. I was advised to go to the infectious diseases clinic at UCLA - but the paperwork alone as a foreigner seems onerous and pointless. I'm almost convinced that's going to be the most ridiculously expensive route to get IDSA treatment.

Or would I be better seeing a so called 'LLMD' - perhaps referred from a list from ILADS?

(1) what testing protocols or type of lab tests would you seek out and order?

(2) how do I find the best advice on treatment here on the west coast of the US?
If you have a reason such as a tick bite shortly before you became ill, you need to know where it happened since the tests are species sensitive so a UK Lyme and US S. CA Lyme will not test the same. US tests generally miss European species except the C6.

So if you thought you were bitten in the US, you need US tests and if in Europe, you need the European local country tests. US tests can be west coast versus east coast specific. So where you were bit and where you get tested is important.

If you are in the US, I would find a doctor willing to run a set of Lyme tests you request. Some alternative doctors will do this while a UCLA ID doctor will run the US Lyme ELISA and if negative - send you home. If you are ELISA positive then he will run the Western Blot and if negative send you home. If you are positive on both ( unlikley and lucky - sorta), you will get 3 weeks of one antibiotic. 50% chance it will fail if its been 2 years but you are early IF ITS LYME! - A full battery of tests should eclude a whole set of differentials. It might just be mononucleosis if the EBV test is correct. You need good mononucleosis testing also.

Initially I would ask the alternative doctor to run 2 sets of tests at 2 labs if you were bitten in the US.

Stony Brook University Laboratory

http://medicine.stonybrookmedicine.edu/ ... 20form.pdf

Serology blood tests - C6 Lyme ELISA AND Western Blot irrespective of whether C6 is positive

AND

http://www.igenex.com/files/PATIENT_TES ... T_FORM.pdf

5010 Initial Lyme Panel AND C6 ELISA

This will give you a good idea of where to go next.

Here is a list of conditions to consider that might cause the same general symptoms that also need to be explored:

http://med.stanford.edu/chronicfatigues ... nosis.html

Infection possibilities

http://med.stanford.edu/chronicfatigues ... tions.html

Just some ideas - not medical advice..
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902

User avatar
ChronicLyme19
Posts: 564
Joined: Mon 11 Aug 2014 17:42
Location: NY, USA

Re: Best way to seek diagnosis and treatment

Post by ChronicLyme19 » Mon 8 Feb 2016 5:04

Lyme is a great imitator, so I would be sure to be ruled out for other things as well. Part of getting diagnosed with Lyme, is making sure you don't have overlapping conditions. You could have Lyme, or you could not. You could have other things or you could not. Or you could be dealing with more than one thing at a time. It's a good idea to keep Lyme in your differential diagnosis, but you still need to rule out other issues. Lyme testing is still really crappy, so it may or may not help in your case.

Either way, whatever you have, trust your body. You know what is normal for you. Keep seeking medical advice if you need it. Don't be afraid to get second or third opinions if you don't trust the first.

Maybe try keeping a detailed journal of your symptoms. That should help you explain what is going on to your doctor and notice slow trends over time.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

Post Reply