lyme..not lyme?

[m3369]

2 years sick now and still unsure about lyme.Ive had three llmds several failed treatments and contradicting test results.I have done i.v.,oral,and even high dose silver with no affect.No herxing no feeling better nothing.Igenex said 2 bands igm pos.and igg neg.Mdl so no lyme by any standard pcr,peptide,wb,elisa,and neg coinfections.My cd57 and c4a are dead on normal.Symptoms are muscle and nerve pain in legs,twitching hands and head,ears ring,skin problems,internal shiver,and fizzing feet.So my question is lyme not lyme?How can you tell or is this lyme thing all ********?Oh yeah neg for everything ms,lupus,the whole 9.The only test result that ever came back off was elevated protien in csf.

[patsy10]

I hear what you are saying and I've been there too.  This is why I gave up going to doctors except for one who really cares.  One time I waited 3 months to see a neuro only to be told it was all in my head.

[m3369]

I guess my confusion starts with the labs.How does one lab get a positive and another get nothing when they are doing the same test?And then there are the docs.Like I said before I have two llmds and one ID who actually believes in lyme and none of them can agree on anything.They all tell you something different about how it works and how to treat it.The only thing Ive found to be consistant is that noone gets well.We all suffer for years,loose everything,spend a ton of money we dont have,and in the end we are no better off than when we started.It really leads me back to my original point and that is that we all have something and no one knows what it is and dont really seem to care.I mean think about it.How many times have you spent months trying to get in to see a doc and when you do they run a test or two and send you home for another month waiting on the results when they get the results in a couple days.Then when you get your results that they could have let you in on three weeks prior they put you on meds and send you home again.Then when you have problems with the meds or they are not working you call and they say okay well we can get you in in another month or two and again your left to suffer not knowing what to do.The process just keeps repeating with no results.Like i said these docs are all stupid,dont care,and most are both.I wish the docs would read these forums and get offended enough to prove me wrong.But you know they wont because they cant make money here.

[JackieCalifornia]

ME = http://www.disapedia.com/index.php?title=Myalgic_Encephalomyelitis_(ME)  per patsy10's previous post.  

It's an ailment I'm not familiar with, but I think it's all the story of the 7 blind men and the elephant:  they're all touching an elephant, they just don't know that it has multiple manifestations ... like our nemesis Lyme and its co-infections, and ME and CFS and FM are perhaps different aspects of the Lyme elephant.

I have Lyme and babesia, and the babesia apparently was giving me worse symptoms than the Lyme, at least at first.  

Babesiosis, ehrlichiosis, bartonella, and couple I might be forgetting all get frequent flyer miles for tagging along with Lyme ticks.  Think of them as bonus diseases.  Yuck.  

[patsy10]

I see the ID on Thurs.  I'll let you know what she says.  Two things happened to me just before my symptoms started...I had 3 bullseye rashes and I had the hepatitis B vaccine.  It even mentions that vaccine as possibly being a causative factor in ME in that article.  But it also says that lyme can be mistaken for ME.  Same old story.  This is why I decided to see an ID.  

[m3369]

i didnt test for coinfections when i did the igenex but with mdl they tested me for all of them.all neg.What is ME?

[jason80]

Thx for posting that: I can never keep track of all of the names but the description of ME is quite consistent with what my IDs thought was possible in my case.  Let me know how your lab work pans out.

p.s. the neuro docs I have seen have also been unsympathetic, seemingly more so than the other docs. I suspect it is because they believe that unless one has brain cancer, things can't be that bad. And they (and most other doctors) are convinced that stress is 90 percent of the problem, unless your MRI shows something bad. I wish for one day they could feel what it feels like to be in my skin.

[JackieCalifornia]

I couldn't tell from your email which co-infections you were tested for.  Would you list them?

... and, I would note, there are LLMDs and then there are LLMDs ... since Lyme+ are mysterious, different LLMDs treat differently.  I've been on meds and on doses of those meds completely different from what I read others have been on.  Three LLMDs does seem like a lot ... but ...

[patsy10]

I'm with you regarding the neurologists.  I saw 5 or 6.  Not one had a clue, really.  I did respect the one who said "I don't have a clue what's wrong with you".  Oh but I did get a diagnosis of fibromyalgia/ cfs from one of them.  It's also easier to call it FMS/CFS than say "I don't know".  

[wonko]

I think you'll find a lot of agreement with your views on neurologists in this forum.  Of the three classes of doctors you list, all of my neuros (four) were in the vast majority: both uncaring and incompetent.

Sorry to not have more advice, your situation sounds very complicated.  A lot of us share your concerns about Lyme being a diagnosis of convenience for certain doctors who are potentially taking advantage of desperate, sick, people.  

[m3369]

mri was clean.Infectious disease doc said usually elevated csf protien usually means infection of some kind.The neuro said it meant nothing without something to go along with it.All neurologists are idiots,all of them.I have seen seven I should know.My tests were western blot but like i said mdl did pcr,elisa,c6 peptide,etc..all neg.the western blot was igenex.The thing i dont understand is everyone says lyme is hard to diagnose but if you have ever watched mystery diagnosis i have seen two seperate episodes where the docs were confused ran a test and confirmed lyme.One was called a bac test either on blood or csf i cant remember and the other was a pcr test on urine. why havent all three of my lyme docs done either of these?I do believe in lyme after watching under our skin but i swear its really startingto feel like a racket to me.Its like instead of taking the time to figure out whats really wrong with you its easier to call it lyme since its so mysterious.I say that because after 2 years and 40 docs i have learned there are only three kinds of doctors.The ones who are incompetant,the ones who dont care,and the vast majority who are both.

[patsy10]

I concur with jason80 when he said "Unfortunately, there are probably a lot of things that can cause problems that are difficult to dx clearly".  In fact, I was reading something about ME the other day and it sounded so much like me it prompted me to make an ID appt.  My picture could have been attached to this.  Not saying I or anyone else here has this but it is very similar.

http://www.disapedia.com/index.php?title=Myalgic_Encephalomyelitis_(ME)

[jason80]

What did neurologist say about the elevated protein?  I've had two IDs who thought that CSF was much more persuasive for detecting Lyme than usual blood tests, did you have WB or ELISA perfomed on that?   Unfortunately, there are probably a lot of things that can cause problems that are difficult to dx clearly.

[patsy10]

Your situation is very difficult.  Three LLMD's should be able to figure it out.  IV antibiotic therapy should definitely lead to some improvement. However there are resistant cases that do not respond to treatment.  I am no doctor but I guess I would be questioning the lyme diagnosis.  I question it anyway as I think many people do.

Wonko gave you some good advice.  I am doing exactly what she suggested to you, see an ID doctor.  I'm not going for reasons of lyme because I know better, but to rule out other things that could be causing these symptoms.

What did your MRI show?

[wonko]

I'm just a patient, so the following is just an opinion.

Your case does sound confusing.  While your symptoms are consistent with Lyme and/or co-infections, your reaction to treatment doesn't.  (Though I'm not sure about what Ag treatment?)  

I was 2 bands in IgG (or positive, by Igenex standards) and 1 band IgM (negative).  IgG positive is more supportive of long-standing stage infection.  Since you've been sick with whatever it is for 2 years, it'd be a bit strange for Lyme to only be IgM positive.  I also had a normal CD57,. but did test positive for one co-infection.

Your question of how to tell if it Lyme or not is of course very tough to answer, given how unreliable the tests are, and I can relate to the frustration in your post over this.  It's good that you've had a lot of other conditions ruled out.  

Have you ever seen an infectious disease (ID) doctor?  They may be able to test for other infections and conditions.  Since your symptoms sound Lyme-like, but your treatment failed, maybe very thorough tests for other infections/pathogens would be insightful?

Sorry to not have more ideas, I know being undiagnosed is confusing and frustrating...Maybe others will have more/better advice.  Hang in there.