Bands kDa 18 and 41 in serum and CSF-Lyme or what?

[Stargazer_Lilies]

Without going into details or particulars.

I had multiple tests to try to figure out why i am not feeling well. I am not going to list symptoms-it is sufficient to say it resembles some symptoms of Lyme, Chronic Fatigue Syndrome, Multiple Sclerosis.  

MRI of brain without contrast-found "minutes of white matters" lesions
MRI of brain with contrast to evaluate white matters lesions-does not enhance
Evoked Potentials test-pretty much ruled out MS-the test result were either normal or negative
Autoimmunes--oh, too many to list here, repeat test over and over--all negative or normal.  The only exception is Anti-CCP Antibody which alternates between weak positive and negative. From what i read in medical literature,  weak positive can be contributed to viral or bacterial or fungal infection, including borrelia(lyme).
CT/PET Scan-normal
Bone Scan-normal

Western Blot prior to this winter was clean with no bands show up.
Then during winter I had serious bout of old neurological symptoms--I last had them in 1999.  Whatever it was  came back.

As usual, the doctor ran all typical autoimmune tests and Western Blot.

Autoimmunes all are normal or negative.

Western Blot-was clean all way up to summer time, then this past winter, first only band 58 show up, then band 62 show up too.

Last month-I saw hematalogist for trend of low WBC that start this past winter and unexplained chronic low grade fever.  She say, "good news, no cancer" and "bad news, you are sick, and I don't know what it is". She suggested I see pulmonary specialist because of incidentally finding of apical prancehmyal scarring in both lungs on imaging studies even although I have no history of pneumonia, and infectious disease specialist to see what I am infected with.

My dermatologist wanted to do skin biopsy because she is puzzled why i am not responding to any skin related medications except for antibiotics but not 100%.

My Rheumatologist now thinks I don't have rheumatoid arthritis at all, but something else. I have to concurred with him.  He suggest I see infectious diseases specialist if my neurologist didn't find anything.

Two weeks ago I had lumbar puncture done, and I saw my neurologist's assistant NP yesterday.

She says all is normal or negative. MS is doubtful, and you need to go back to your doctor, tell him/her yo are still not feeling well and still have fever, etc...Neurological condition do not causes fever and few specific symptoms i have, she says.

While there I pour over the lab reports (Quest and Stony Brook). On the report it show:
Lyme Disease, Serum
Lyme Disease Serology   Borderline
Patient Specimen O.D.   0.148

Lyme Immunoblot, Serum
Western Bot Result IgM    Interdeterminate
IGM Bands (kDa):  41
                            IgM NONSPECIFIC bands were also detected.
Western Blot Result IgG    Interdeterminate
IGG Bands (KDa): 18, 41
                            IgG NONSPECIFIC bands were also detected.

Lyme Disease, CSF
Lyme Disease Serology  Non-Reactive
Patient Specimen O.D.    0.059
Reactive Cutoff  O.D.      0.162
(3 standard deviations)
Borderline Cutoff O.D.    0.126
(2 standard deviations)

Lyme Immonoblot, CSF
Western Blot Results IgM    Negative
                                         IgM Reactivity was to NONSPECIFIC bands only.
Western Blot Result IgG     Interdeterminate
IGG Bands (kDa):               18, 41
                                         IgG NONSPECIFIC bands were also detected.

I point out to the neurologist's assistant NP--something is or was swimming in my spinal fluid!  

She say, it is minuscule amount, and it mean nothing. She gave me copy, so i can take it to infectious disease specialist so they can work from there by looking for something else, and advise me to make sure my insurance cover it. I got no referral, she saying I have to go back to my "regular" doctor.  For final neurological diagnostic I have to wait for my neurologist return from out-of-town trip which will be sometimes during July. I am not going to wait.

Someone suggest the rapid downturn of my health that start last fall, then this past winter may be series of "herx" reaction because I started long term antibiotics treatment(Doxycycline) late summer in attempt to control skin infections.

I live in Suffolk County, NY, Hamptons to be specific. Too bad Dr. Joseph Burrascano doesn't practice here anymore. From what I read in other posts, in other forums---I may need "lyme literate" MD with open mind, willing to doing more testing, not just borrelia but others". I don't know who yet--I am looked at Lyme Resources Medical (based in NYC)-a good two hours drive or by train-any thoughts on them? I wanted to see who else is out there as I am too weak to drive far, but I guess I have to figure out something if need to.  

I feel I am losing battle with my body, I've tried vitamins, and modified diet, so on...I feel like I am horse rider with horse that won't move, or a bird with wings clipped, and stuffed into very small cage.  I feel my dreams are dying--I need health ASAP back so i can purse my dreams. To preserve one of my dreams, I wanted to do IVF procedures to freeze eggs for future use but I am too weak to do it now and my biologic clock is ticking, and I need to at least recover some of my health to do it.

Any idea what band 18 and 41,  and prior bands 58 and 62 could be? If not borrelia?  I don't recall any tick bite, but i do recall many times i found tick walking happily on me, and once found dead tick in middle of my bed under the blanket. I had to pull them off my dogs so many times. I am nature lover, I wandered in the bays, and had "flesh eating bacteria" couples of time that were treated successfully(?) with antibiotics. I also experienced unexplained rashes from time to time (No they are not bull-eye type).   I have interact with wild feral cats, animals, and I worked in animal setting environment.  So who knows what I pick up, and how long ago, and what I may have accumulate over the years due to immune being compromised by "whatever it is".

Thanks in advance for any insight or lyme literate MD recommendations.

[Ricobord]

:)

I am 5 months into treatment and clearly much better. But I am by no means ready to work.  My doc asked me about whether I would go to work if I felt I could and I said yes.  But that is many months away given the pace I am on now.  I went from hospitalization on morphine and barely able to walk last November to low grade pain and able to due light housekeeping and occasional errands in the last month.  The most frustrating part is I am unpredictable. I never know when I am going to feel pretty good or feel crummy.  Doc estimated I have about 10 months to go.

[Stargazer_Lilies]

Ricobord, I laughed when you say they can't crawl in there (refers to the "dead" tick I found in my bed). You are right, they had to hitch a ride.

Ricobord, and JackieCalifornia--Did you ever recover? If not full, but substantial with energy and capacity to work full time? How long does it takes?

[JackieCalifornia]

Ditto everything Rico says above. Also the main voluntary group for Lyme specialists is ILADS and they have a referral function to find a doc. Email to: contact (at) ilads (dot) org with your geographic area. Oif you don't like the ones on the list for some reason, email them again and tell them who they sent to you before so they don't repeat themselves. Hang on, you're doing the right thing to keep pursuing better treatment. Keep us posted!!

[Ricobord]

Welcome to our little corner of the world!  You have quite the story, and it is very consistent with many late stage Lyme patients who get bounced around between doctors like a ping pong ball, but without an answer.

My story is similar to yours in that my symtpoms mimiced MS. I also went through the MRIs ("scattered" lesions in the white matter, 20 to my count, unenhanced).  My lumbar puncture (a nightmare requiring six attempts) was clear of Lyme, oligoclonal bands, and signs of sarcoid and cancer.  As I developed non-MS symptoms, I had to figure it out for myself as multiple doctors couldn't figure out what was wrong with me.  I had horrible abdominal and rib pain and tachycardia and ended up in a very well respected hospital where they insisted I did not have Lyme because of my negative blood screening test (IFA), and CSF Test.  When I tried to say, "But I read...", I was abruptly cut off and told, "None of us think you have Lyme!". They discharged me with Vicodin and told me to go to a nearby prestigious research/university hospital.  I was trying to say that I had read that doctors who treat lots of Lyme were reporting positive CSF in only about 10% of their patients.  LLMDs rarely use that test because it is only useful if it is positive.

Only after I got tested at IGeneX and went to an LLMD did I get diagnosed and start treatment. I don't think any other doctor would have diagnosed me.  They don't know how!  I did the full coinfection panel as I thought my shortness of breath was from Babesia, but it turned out that I have Bartonella.  3 Babs tests have been negative, and I had no reaction to two different herbal treatments for it.  We have cautiously concluded I don't have Babesia and have been actively treating both Lyme and Bartonella.

And so, your story sounds very familiar.

As to your test results, here is a good article written by the doctor (Dr. James Haller) who has become a self taught expert on Babesia.  Following is a quote from him describing the diagnostic philosophy of Dr. Charles Jones, famed pediatric Lyme expert.
http://www.personalconsult.com/articles/drjonesapproach.html
---------
There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.

Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease.
---------

Band 41 is usually the first band to show up in a Lyme patient.  It is from the flagellum, and our immune systems quickly recognize it and start creating antibodies. It can occur on some other bacteria, so they say it is not Borrelia specific.

You do have 18, which I also had. It is Borrelia specific. I also had band 31, which IGeneX says is more common in people with predominantly neurologic Lyme.  The LymeMD blogger says IGeneX is more likely to find band 31 than "mill" labs. The CDC test interpretation excludes 31 and 34 from test interpretation because at the time they defined it in 1994, they were just finishing up a Lyme vaccine that used proteins 31 and 34.  Vaccinated patients would show positive on them, regardless of whether they were infected or not, and so they ignored them. Then the vaccine was pulled for safety issues and the IDSA decided to use the CDC surveillance criteria as an absolute diagnostic requirement.  That has been a disaster for Lyme patients. People like me (and probably you, too), get sicker and sicker without a dignosis.

So, you have a Lyme specific antibody (18), a very common antibody for Lyme (41), another common antibody for Lyme considered by the CDC (58), and I am not familiar with 62. You have also eliminated the other possibilities, such as rheumatoid diseases, and MS. Given your symptoms and tests, I was be surprised if an LLMD did not diagnose you with Lyme.  I highly doubt that an ID doc or rheum or neuro will diagnose you.  ID docs have the worst reputation as Lyme deniers and the rheum and neuros aren't much better..  The ID docs' organization (IDSA) is under constant criticism for their Lyme protocols and they have dug in their heels and become hostile to Lyme patients. Rather than admit they are wrong. Even if they did diagnose you, they would only give you a month of abx, which is unlikely to cure you at this point. An LLMD will treat you until you are well.

It sounds like you have done quite a bit of research, which is great. I am convinced that Lyme patients only get better when they become their own advocate to get treatment.  I will send you a private message with the name of a couple world class LLMDs in the New York area.  They don't take insurance, so if you would like to find one in network, you'll have to check with local Lyme support groups to ask them.  Not all who claim to treat Lyme know what they are doing, so a referral from a happy patient is valuable.

Oh, yeah, and that dead tick in your bed probably wasn't dead.  A tick in your bed is a pretty sure sign it was feeding on you and dropped off while you slept.  That can't just crawl in there.  After they feed, they take a long time to digest their meal and they go dormant, then molt, and then go looking for another meal. They only feed three times in their life and they live for 2 years.

I would suggest asking one of your doctors to authorize tests from IGeneX to see what they show. You request a test kit from IGenex and pay up front. Insurance usually reimburses part of it.  I got about 2/3 of the cost back only because an in-network doctor authorized them.  Best money I ever spent!  You could also ask for a CD57, which measures a particular immune cell that only HIV and Lyme are known to suppress.  Every Lyme patient I have heard of who had this test was low on it. Most doctors are unaware of it, but it can help in a diagnosis.

I hope this is helpful!  Keep us posted!