Help choosing appropriate tests

Hi,

I am 29 and was diagnosed with Multiple Sclerosis 4 years ago after an acute incident where
my right leg went numb. I have a few small and stable lesions in my nervous system, but no
oligoclonal bands in my csf and no relapses. I have a very 'atypical' case. Additionally, I
have become significantly weaker and experienced marked cognitive decline and brain fog.
Based on extensive research and experience I feel it is likely I have neurological lyme
disease. According to my symptoms they would most well be described as Enchephalomyelitis
due to 'late neurological lyme disease,' which is more common in Europe according to...

http://www.columbia-lyme.org/patients/ld_lyme_symptoms.html

The pathogen Chlamydia Pneumonia has been implicated in triggering and sustaingin multiple
sclerosis by researchers at Vanderbilt, so I empirically began antibiotics 9 months ago
based on that research, and have gotten excellent guidance via the CPNhelp.org website.
Since starting the protocol my symptoms have nearly doubled in intensity. I have strong
herxheimer reactions to Amoxicillin and Flagyl but not Doxycycline or Azithromyocin, which
is one of many reasons I have gradually begun to suspect Borrelia Burgdorferi. I graduated
college with a B.S.last year and had to stop working due to increasing symptoms. The most
likely scenario for contraction would involve a bite from an unknown insect 18 years ago that
became infected with a rash, for which I was hospitalized and provided IV antibiotics for a few days.
Otherwise, I could have been bitten backpacking in Europe at 19 years of age.
I was once tested for lyme disease through a subpar facility (Quest) last year and came up
negative. I want to get the most accurate testing possible. If I get a false negative I will be quite
confused as to my situation, and it will be hard to get a doctor "in my corner." As well, I
can't afford follow up testing. I can only afford this once as I am getting a loan and will
try to get reimbursed through Lymetap.org. So, my question is:


1. I am trying to decide between a complete 'Igenex' panel for lyme and co-infections or
'advanced laboratory services' which cultures the organism but requires one to
stop antibiotics, and is only 80 percent sensitive. I think Igenex is sensitive into the 90th
percentile but, of course, relies on one's immune system. I am concerned about relying on my
immune system to present an antigen since my symptoms are primarily neurological and the
Blood Brain Barrier is immune privileged. As well, I have done extensive blood-work showing
immune system abnormalities and a depressed White Blood cell/NK cell count.

I really need to get this right and would deeply appreciate everyone's thoughts.

Best,

MS-diagnosed

Hi MS,

Welcome to the forum! I am so sorry you are sick. I am glad you were able to find us.

I agree with ToddPaul. The Igenex test would help a lot.

Are you seeing a LLMD?

@bluebyyou. I have a tenative appointment late August. I wanted to get some results first since the appointments and labs are so expensive and not covered. Also, I'm trying to make sure she is the best Llmd in southern California, so I'm still looking around so to speak. Otherwise I have a wonderful doctor who will order whatever preliminary tests I require. Thanks for your concern. I'm glad I found this forum.

Best, MS

@ GH, you have to remember that lyme is very different in different people. I've had herx rxns but not strong ones and not everyone has herx reactions. There are several meds I've been on that I haven't had herx's too.

I think mine was primarily neurological so I did not have a very high bacterial load it was just hitting me in the CNS so my herx rxns were quite mild compared to most.

Thanks for the input. I'm getting a CD57 test through labcorp at the moment. I'm leaning toward the complete lyme panel since I would likely get reimbursed for most of it. Perhaps I will do the co-infection testing separately depending on the lyme and cd57 results.

Best,

MS

ToddPaul,

when you say that you tested positive for Anaplasmosis and Mycoplasma, did those show a current infection, or did you just have titers for them?

I just had an ELISA test which came back negative for lyme, but my ehrlichea test showed a high IGG number but a normal IGM number.

I am learning as I go and realize there are other co-infections I should be tested for too. Curious how likely it would be to have one co-infection without the others.

Hi MS - it depends on how long you have been on antibiotics for - I would say longer than two months and it might affect your test results. 30 days or so shouldn't matter.

@opugirl. I've been on antibiotics for 9 months now. I'll call Igenex... I was also curious if their western blots are sensitive for European strains of Borrellia and such, or just the bacteria found in North America?

Ms - I live in Southern cal- I also did the entire co-panel thru Igenix (Lymetap reimbursed 75%) although no co-infection was discovered, which was disconcerting. Where in So-cal are you? I have names of 2 LLMDs who accept insurance.

MS-diagnosed,
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Just got back blood-work from Labcorp

Abs. CD8-CD57+ Lymphs 48: reference range of 60 - 360
Percentage CD8-/CD57+ 2.5: reference range of 2-17

So, if I'm reading it correctly the test strongly implies Lyme. That is after almost 10 months of low dose antibiotics. Also, I've been on low dose naltrexone for more than 2 months, which is supposed to increase the "NK" cell population according to my research. One wonders how low my numbers were 10 months ago before the antibiotics and LDN....

So, based on that I'm just going to get the complete panel! Otherwise, out of curiosity am I correct in interpreting that as a strong indicator of Lyme?

Thanks again

ToddPaul said...
"Mine were the opposite where the IgM was high and the IgG was neg. so it showed an active infection. "


Lyme does not play by the rules. IgG does not mean past, inactive infection when it comes to Lyme.

The bacteria changes its outer protein coat periodically, thus requiring new IgM antibodies to be developed against the new proteins.

Therefore, it is actually more common for someone with chronic Lyme to have more IgM than IgG antibodies to Lyme.

For more info, see the following:

Tests Explained:
/sites.google.com/site/drjoneskids/lab-tests/tests-explained--dr-crist

27 Reasons for a negative Lyme test:
www.mentalhealthandillness.com/seronegativelymedisease.html

Reasons for False Negative Test Results in Lyme Disease:
www.anapsid.org/lyme/lymeseroneg.html