Could this be Lyme Disease

I have been experiencing very unusual thing the last few months.  I started by having bad headaches which lead to head pressure, in my temples, scull, eyes, ears, face...which is always present at time worse then others.  This then led to dissiness and vision issues and irregular heart beating.  Now I'm experiencing joint pain in my knees.  My symptoms stated about two months ago.  I found a tick on my left leg about six months ago.  I removed it and never got the traditional bullet rash, so never saw a dr...now I'm wondering if this could all be Lyme Disease.  My main dr has done every blood test you could think of, except Lyme.  I've been to see an ENT, a cartiologist, and in December will be seen by a neurologist.  In the meantime should i go back to my main dr and ask for a lyme test to be done as well or should i wait and mention it to the neurologist or do you think that the likelihood of Lymen disease to be very unlikely?  I was a rather large tick, thinking it was a wood tick, not a deer tick and like I said no rash after...your thoughts please...

[JoeSmith12]

Also should say I went from having tons of energy to having next to none...I'm always tired now...in addition have some trouble sleeping which might explain that away and have constant brain fog...

[JackieCalifornia]

I'm no MD, but you seem to have a bunch of possible Lyme symptoms.  Even a TICK!  Many of us never saw one.  

Frankly I don't understand the insistence of the MDs that only the little deer ticks can give you Lyme ... yes, the deer are the reservoir for Lyme, but if a deer tick falls off an infected deer and bites a dog, then the dog gets Lyme (and they do!  vets are very up-to-date on this topic), then dog tick bites the sick dog and then bites you, why can't you get Lyme??

If I were in your shoes, I would NOT wait to see the neurologist.  Quick treatment is important, and altho 6 months have passed, the sooner the better is the rule of thumb for treatment.  Also, neurologists as a group are NOT known for 'believing' in Lyme, so if I were you, I'd go back and insist on a Lyme test and also tests for common co-infections that often are carried by the same ticks.  You can also then see the neurologist at the scheduled appointment, because it's possible you might have something other than Lyme.

Your main doctor you are thinking of going back to for the test may have a more open mind, but the fact that he tested you for everything BUT Lyme is not encouraging.  You don't say where you live, but if you could get yourself to an MD who has a more aggressive and broadminded view of Lyme, I would do so.  Lyme doctors (patients sometimes call them "Lyme Literate MDs" or LLMDs) don't advertise, because they sometimes get flak from the local medical boards who don't believe in Lyme.  It's a sad fact that Lyme patients end up doing a delicate dance among their various MDs, who engage in turf battles.  The only casualties are the patients.

If you need help finding an LLMD, let us know and we can direct you to some websites/goodle searches.

Hang in there.

[patsy10]

I agree with Jackie.  Those sound like possible lyme symptoms.  Ticks are everywhere.  I have pulled several of the large brown ticks off my scalp.  I got them off of tall grass in a field near my home.

I would insist on a lyme test from the doctor.  Keep in mind though that lyme testing is not very accurate.  So you can have it and test negative.

[gorbybelle]

the 'tick' I pulled off my 'buttock' was pretty big! - I am 99% sure it was not a deer tick.

I agree with the above posts - it sounds highly likely you have an infection from that 'tick' - lyme tests can be very inaccurate that is why it is a good idea to see an 'LLMD.' - these docs. understand the whole picture of lyme - much more so than 'main stream' docs.

Many people here - myself included - have been treated for lyme without ever having a positive test - diagnosed on symptoms and poss. history of tick-bite - though ticks and the rash are not always seen.

[JoeSmith12]

Thanks for all the responces, I went to my Dr yesterday and he took it totally serious.  I took several blood tests.  Problem is he said it will take two weeks to get results back.  I can't believe it takes so long when testing for Lyme.

[momof3littleangels]

I had tons of symptoms for over 2 months and went to the ER 3 times.  I had 8 doctors and tons of tests, pretty much everyone you can think of.  I had  a neg. Western Blot and a neg Elsa.  I found a LLMD and tested through Igenex lab, and I got a positive.  Very postive!!  No questions now..

Joe do you know what test your doctor ran?  Keep us posted on your results.

[JoeSmith12]

Thanks for the responces, well my lyme test came back negative, I asked what test was done, they told me a lyme panel AB Screen???  I see the Dr next week for a consultation, should I pursue the Lyme possibility at this point?

[wonko]

I think you should still be actively pursuing Lyme.

It sounds like you got an ELISA test, which is the 1st of the 2-stage testing.  Standard guidelines will deny you the 2nd stage based on your negative screen.  

But keep in mind...that the tests are not that reliable.  Lyme is much more treatable early on then it is after a delay.  If it goes untreated, it can cause chronic problems and permanent damage.  

You live in an endemic area (after all, this disease is named after Old Lyme, CT!), you have known tick exposure during tick season, and your symptoms fit.  I am not a medical doctor nor can I tell you what to do, but if it was me in your shoes, knowing what I know of the pain and complications of a late dx, I'd insist on a course of antibiotics ASAP.  The risk of a few weeks of oral antibiotics, in my opinion, is far outweighed by the benefits of early treatment for your potential Lyme.

[JackieCalifornia]

I agree with Wonko: full speed ahead.

[JoeSmith12]

I had the AB and Western Blot tests and both came back negative.  I will be retested again next month, but my Dr thinks it will more then likely come back negative again.
All my heart test and rheumatological test came back fine. Also my MRI came back fine, nothing out of the oridinary.
Thanks for the suggestion on record copies, I have been really good about a timeline and keeping records in order.
I'm feeling so frustraded.  I've seen so many dr.s and have had so many test and starting to feel like no one will ever be able to figure out what is going on with me.  I have a Dr. appt. in a few weeks with the neurologist, so let's hope he will have some suggestions on why I'm feeling like this.  
momof3littleangels-What is a Igenex lab?  My Dr. believes in Lyme Disease, but we only have Quest labs her in the area?
Wonko-Thanks for the advise...I had been on antibotics when the symtoms (symptoms) forst started for ten days because they thought I had a sinus infection, not sure if these are the same antibotics used to treat Lyme disease or not or the length of treatment, but I had no improvement during that time.

[RoseHK]

I was definitively diagnosed with Lymes disease by means of a 'lumbar puncture'.  It is a very 'uncomfortable' procedure, to say the least!   After the diagnosis I had a 'picc' line placed in my upper arm, through which I was given an anti-biotic,Rocehprine,(I totally misspelled that).

I agree with Wonko, the sooner treated the better;  I was not diagnosed soon enough and my treatment did not work.

I hope you are able to find a LLMD.

Rose~    

[JoeSmith12]

You said your diagnosis didn't come soon enough and your treatment did not work, so you continue to live with unbareable conditions?  Nothing more can be done for you?  Joe

[JackieCalifornia]

The standard, CDC-aligned tests are the ones you seem to have had already.  They are, so I understand, neither very sensitive nor specific -- meaning there is a lot they don't detect, and if they do detect something, it's not clear what it is they found.  Meaning:  not very good tests.

Igenex is a lab in Palo Alto CA that runs PCR testing, looking for the bacteria in a different way from the CDC-aligned tests (Western blot etc).  Non-LLMDs put no faith n the Igenex tests due to lack of a seal of approval from the CDC.  LLMDs believe the Igenex tests to be more accurate (tho not perfect).

Your MD can order tests from Igenex -- go to their website to figure that part out, or call them.  They are very nice people in my experience.  Then you take the blood order from your MD (filled out on the IGenex form) to a regular lab near you (like LabCorp or Quest) and they will draw the blood and send it on to Igenex for analysis.  Don't go on a Friday  --  if blood sits around, it degrades and the tests are not as useful and sometimes are useless.  I have asked labCorp offices near me when they are goign to send out the samples, but I sometimes get evasive/snotty answers, so rather than take the risk that time and money and blood are wasted, I go on Monday through Thursday only.

[anonymous680]

Can you report what bands (if any) are active for igG and igM? CDC requires a certain amount to light up, but often your body doesn't respond adequately and doesn't seroconvert igM to igG correctly since the bacteria can evade your immune system. This is all controversial right now, but there is scientific evidence and journals that support these theories.

[JackieCalifornia]

This information (below) has been crossposted in several places on the web; I don't know if this is the current Igenex position or who originally wrote it.  

I wrote down on a printed copy of this that the CDC will consider you positive for Lyme if you have either 5 IgG or 2 IgM positive results.  Don't know where I got that data, but have no reason to think it is wrong.

The numbers below (9, 12, etc.) are the band numbers:

================================================
                Igenex Western Blot Break Down by band

9 cross-reactive for Borrellia

12 specific for Bb

18 highly specific to Lyme (Many LLMD's say if this band alone is positive, you have lyme)

20 cross-reactive for Borrellia

21 unknown

22 specific for Bb, probably really the 23/25 band

23-25 outer surface protein C (OspC), specific for Bb

28 unknown

30 unknown; probably an outer surface protein; common in European and one California strain - Has cross-reactivity with several different types of viruses

31 outer surface protein A (OspA), specific for Bb - Has cross-reactivity with several different types of viruses

34 outer surface protein B (Osp; specific for Bb

35 specific for Bb

37 specific for Bb

38 cross-reactive for Bb

39 is a major protein of Bb flagellin; specific for Bb

41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellae)

45 cross-reactive for all Borellia

50 cross-reactive for all Borrellia

55 cross-reactive for all Borrellia

57 cross-reactive for all Borrellia

58 unknown but may be a heat-shock Bb protein

60 cross reactive for all Borrellia

66 cross-reactive for all Borrelia, common in all bacteria

83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane

93 unknown, probably the same protein in band 83, just migrates differently in some patients[/b]

An IgM positive test result means more recent & likely currently active infection. IgG positive means previous exposure to the bacteria or older infection of Lyme. If no symptoms are present with IgG positive, it may mean an "inactive" LD infection. No matter the results, please remember LD is a clinical diagnosis, you can have a negative test and still have Lyme Disease and the co-infections, even through the best labs. If you have symptoms, you need treatment.