Please help. Having a hard time pinning down a diagnosis.
Took the Igenex Lyme Panel. This is what it showed:
IgM:
31kDa: IND 39kDa: IND 41: ++ 45: +
IgG:
23-25 kDa: IND 41 kDa: + 58 kDa: +
HME (Ehrliochiosis):
1:160 Titera (Igenex states that this may mean an active infection)
All the other co-infections came back negative.
CD 57:
64
Vitamin D:
22
Also showed a bunch of Antibodies to:
Coxsackie B Mycoplasma Pneumonia HHV 6 Cytomegalovirus
But the doctor says that a lot of people show antibodies to these virus's and most people have been exposed to them.
Been to a bunch of neurologists who have ruled out auto immune things (thank God).
Other tests taken:
MRI of Brain Blood tests (lots) MRI of Cervical Spine
Just having a hard time pinning a diagnosis.
Is it lyme? Is it not? Is there a raging infection or do the test results just show past exposure?
Like many people out there, we've been told to see a good Psychiatrist. That would be ok but like a lot of folks, we think something is wrong psychologically.
Is it lyme? Does it make sense?
Or are we just looking for a diagnosis and lyme is the catchall?
Please help. Thank you. All advice is appreciated.
PS. Lots of neurological issues, involuntary movements, myoclonus, muscle twitches/spasms, weakness, fatigue, weight loss, headaches, achey muscles, achey joints, excessive saliva, eye pain, the list goes on and on.
Posted by sixgoofykids (Member # 11141) on :
Looks to me like it's enough to get a diagnosis by an LLMD. It's not a strong positive, but you have a low CD 57 and as you mentioned, the positive erlichia test as well.
Your vitamin D is also low. My doctor wants my vitamin D above 50, at least.
Remember Lyme Disease is a mutl-faceted illness. The whole body takes a hard hit and more is wrong than *just* Lyme. You have to make the whole body strong so it can fight the viruses and bacteria.
Are you seeing an LLMD who can help you sort this all out?
Posted by timaca (Member # 6911) on :
Get copies of your viral tests. Showing a "bunch of antibodies" is not helpful. You need to know how many antibodies of which kind to do you any good.
For mycoplasma see if your antibody titers are 1:200 or so or above...that may indicate active, chronic infection.
See what your CMV is....if it's way high, that may indicate a problem. Mine is in the 5s (I think that is where it's at...) and the doctors are not concerned...
Consider getting retested for Ehrlichia at another lab...maybe Focus Diagnsotics or SUNY Stonybrook to see if they concur.
Lyme doesn't look as likely since you have so few bands. (most people test positive for band 41).
Good luck! Timaca
Posted by sfcharm (Member # 9392) on :
Hi Jeff,
I live in San Francisco and had severe neuro lyme with myoclonus, body jerks, bells palsy, tremors, body wide twitches, etc.,
I have lyme and was in remission for the last 2 1/2 years. I treated quite aggressively with orals for a year including bicillin shots (4.8 weekly).
After a year I was still having the myoclonus and decided to do Rocephin IV for one year. I did and all my symptoms resolved.
About two months ago I started getting severe nerve pain. It has progressed now to body wide nerve pain. I truly suspect it is lyme that is active again.
I started treatment with oral antibiotics and hope to see some resolution soon. Lyme needs to be treated aggressively, especially neuro lyme.
Posted by jeffinca11 (Member # 25584) on :
Hi Guys. Thank you for the response.
Here's some more information.
Sixgoofykids:
Yes, we have seen a few llmds. One stated that he thought it was neuro lyme with co infections.
Another one stated that he wasn't sure if it was lyme. Wasn't convinced.
So were back to square on as the blood work was less than definitive.
Timaca, here's the info. Maybe you can tell me what you think:
HHV-6:
2.85 (Positive is >1.10)
CMV:
9.5 (Positive is >1.0)
Mycoplasma:
106
(indeterminate: 100 - 320, postive: >320)
Coxsacki:
1:16 (neg: <1.8)
SFCharm:
Thanks for the advice. Can you tell me who you see in SF as your LLMD? We are thinking of going to a pretty famous doctor upthere and was wondering if thats who you saw.
Def. neuro lyme if it's lyme. I'm sorry for your pain. It's such a terrible illness.
Really, we hope to nail down a diagnosis so we can start treatment.
Please let us know what you think. Such an awful awful illness.
Posted by onbam (Member # 23758) on :
Google LDseronegativity for many reasons why patients (particularly the sickest ones) main get fewer bands than you.
Posted by timaca (Member # 6911) on :
HHV-6 is best tested at Focus Diagnostics lab. See: http://www.hhv-6foundation.org/testing.htm I am not familiar with that reference range for that pathogen, as mine is done at Focus and titers are used to report the results (eg: 1:320, not 2.85). However, your result doesn't look too high, so it may not be a problem for you (but if you want to be sure, get tested at Focus).
My CMV is in the mid 4s...about half of what yours is and my doctors are not concerned. My Parvo is in the 7s and my doctors are not concerned. I've not had a pathogen in the 9s, like your CMV is, so I don't know what the doctors would say about that.
If I were you, I'd get retested for Ehrlichia at Focus or SUNY Stonybrook (or both), perhaps ask a doctor about CMV and possibly get tested for coxsackie B and echovirus at ARUP.
Good luck, Timaca
Posted by 'Kete-tracker (Member # 17189) on :
A full IGeneX Western blot panel for Lyme IS pretty sensitive but is NOT definitive. The bands shown on your results would give most any LLMD reason to suspect Lyme, especially if you are "Lyme symptomatic". (I also don't like that CD-57 count at only 64. It *should* be up over 100-150, atleast... if Lyme is NOT involved.)
But most importantly, 'jeffinca', Lyme is a CLINICAL diagnosis. The CDC agrees. The opening paragraph for diagnosis of Lyme, from thier Website: "Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migrans, facial palsy, or arthritis), and a history of possible exposure to infected ticks. Validated laboratory tests can be very helpful but are not generally recommended when a patient has erythema migrans." [Lyme rash] ... <http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm>
Posted by 'Kete-tracker (Member # 17189) on :
(Now why did that link not turn blue? Let's try..)
Oh, & you said, "we think something is wrong psychologically". I think you meant "physiologically". So do I.
BTW, ehrliochiosis doesn't usually travel alone. Posted by little_olive (Member # 28063) on :
Weak positive (IND) to band 39. Nothing (nothing) can cause that to react except the Lyme disease bacteria. AND it's an IgM band, to boot, which means it's recently replicated.
You have Lyme disease.
Posted by 4Seasons (Member # 14601) on :
My daughter's first IGneneX WB was not definitive, but her symptomology was, so our "pretty famous doctor" put her on Zithromax for three weeks to encourage her body to mount an immune response. Next test was IgM positive.
This test was positive.
Plus, she was miserable on the abx.
You may want to talk to an LLMD about an antibiotic challenge.
BTW, my daughter went through hell for two + years and is now doing so, so well. So grateful (I'm next).
Posted by jeffinca11 (Member # 25584) on :
hi guys. thank you for the feedback.
kete:
i guess your right about it being a clinical diagnosis as we have not been able to get any other diagnosis besides "psychogenic" from university doctors.
and yes, i meant to say physiologicallyl, not psychological. stupid spell checker!
yes, the ehrlichiosis is a big clue. one doctor said that it could just be showing exposure, but our pcp disagrees.
litle oilve:
band 39 is a good indicator then. i didn't know that. thank you.
4seasons:
i'm glad things worked out for your daughter. can you pm with the name of your llmd?
any other feedback is duly appreciated.
is an antibiotic urine challenge test worth doing?
Posted by jeffinca11 (Member # 25584) on :
^
Posted by Babbs (Member # 27887) on :
Hi, you should be treating that Vit D level. It should be at lease 50 if not closer to 80 or so. I felt a great deal better after mine went up. You can use 4000 units of OTC Vit D daily or talk to your doctor about 50,000 units once a week to get you up to where you need to be. Good luck!
Posted by jeffinca11 (Member # 25584) on :
Hi Babbs.
How would I get 50000 units? Is it an IV injection? Do I need a prescription?
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