Please Help!!!!!

[melanie344]

Hello, I have been tested in the end of January for my annual blood work, and requested to be tested for Lyme Disease. Everything came back in perfect range except for the Lyme Disease. I requested the LD test due to and extensive list of symptoms and I did find a tick on myself when I was maybe 12 years of age, when i went to the doctor then it was negative and the doctor stated there was no bite mark (mind you the tick was in my hairline). When I was tested in the end of January, 2012 the Lyme Disease test came back positive of a 1.49 but both the IgG and the Igm came back negative. I was told I needed to see an Infectious Disease Specialist but was unsuccessful in obtaining one so i went ahead and did extensive research and found other diseases that may make a Lyme result such as mine. I went to my OB/GYN and requested to be tested in the end of April, 2012 for Syphilis, HIV/AIDS, and Herpes as i also do annually. The HIV/AIDS, and the Syphilis came back negative, the Herpes 1 and 2 test came back negative for the IgG, but the Igm Herpes 1 and 2 combitnation came back positive for a 1.34 result. I have been with my husband for over two years and we are faithful. I have finally found a Infectious Disease Specialist after extensive phone calls and dead ends, but my appointment isnt for another several weeks. I was hoping maybe someone had some insight and could make some sense of this. I have never had a blister of any shape or form, I am severely desperate and no one is able to make sense of it and has never heard of this type of situation. Please Help!!!!!!!!!

[youvegottobekidding]

Hear hear to everything Jason said. I agree strongly about going directly to a lyme doc, and also about the therapeutic doses of the nutrients he listed.

Don't accept being fobbed off with a diagnosis of fibromyalgia. Fibro and CFS are the 2 commonest misdiagnoses that lyme patients are given.
I supposedly had CFS for 28 years before another patient in the doctor's waiting room told me she thought I had lyme disease, and told me where to get tested privately.
So my lyme disease started getting treated after 28 years of BS from a doctor who was willing to diagnose something WITHOUT A BLOOD TEST.
If he was willing to diagnose CFS without a blood test to prove it, hey, why not diagnose Lyme disease without a blood test to prove it? At least there is proof that Lyme disease really does exist.

I have spent years on a CFS/fibro support group and I truly believe that CFS and fibro are not illnesses, they are just lyme disease by other names.

[JasonMChicago]

If I was starting this journey today... I would have the "working diagnosis" be Lyme + co-infections.  Based on all your symptoms that's what I would assume (I'm not a doctor or medical professional but speaking from my experience).  I would not waste time going from neurologist to rheumotologist to infectious disease to pain management to etc.  I would try to find a GOOD LLMD and in the meantime do things to boost your immune system.  It doesn't matter what you have a strong healthy immune system is always a good thing, right?  If it were me I would take high dose vitamin c, take cat's claw, vitamin e, a, and d.  I would also take a some b-complex to help with neurological issues.  I'm talking THERAPUTIC doses (not doses for the healthy person).  Lots of these are water-soluable and if your body doesn't need it it will pee it out.  I had both neuro/physical Lyme+ and it was a crazy 1.5-2 years to figure this thing out... but I started going at it aggressively and I'm doing better.  

I totally understand the inner desire to get better.  I had that and still have it today... and that's what keeps me going!

[Ricobord]

Fibromyalgia is high on the list for misdiagnoses given to people with Lyme.  I was also told straight out that I did not have Lyme Disease. (He was wrong.)

Where are you?  We could offer you some names of doctors who actually know how to diagnose and treat Lyme.  Most of them fly under the radar to avoid harrassment, so we don't publish their names here.  We can send you private messages.

ILADS.com is a good place to look for a referral.  Local Lyme support groups are great as they can speak from personal experience and usually know who is good and who isn't.

[mojogal]

I agree with Jackie. What worries me is that I was diagnosed with Fibromyalgia and it was one of my many  misdiagnoses when it is Lyme and a co-infection that I really have.

[JackieCalifornia]

In your situation, I would find a new doc without delay.

Fibromyalgia is a collection of symptoms without a known cause and without a known cure.  Even the TV commercials say fibro 'is thought to be caused' by 'overactive' nerve fibers or some such excuse.

If you need help finding a real Lyme doc, let us know.  

[melanie344]

I had gone to the doctor today and he said straight out that I do not have Lyme Disease. He did some pressure point test and diagnosed me with Fibromyalgia.

[mojogal]

My first husband use to say "she is always sick" and we were married 23 years. My kids remind me that I was bit by a tick almost 20 years ago, Lyme has affected my brain and I have lesions so my memory is really bad but I can relate to wanting to feel better. I finally got to an LLMD and being treated for Barts too so there is hope.

[Ricobord]

I am so glad we could be of help!  Jackie did the same for me when I first arrived here last November, desperately sick and frustrated with the numerous doctors who couldn't figure out what I had.  I am trying to channel my frustration into helping others in the same boat.

I can completely relate to your nostalgia for feeling well, and that bone deep desire to be well again!  You are on the right path!  I have to keep reminding myself that it took me a long time to get this sick and it will take a while to get better.  My current treatment estimate for my doctor is about 15 months.  I am 5 months into it.

I have had it for 6 1/2 years, with chronic and worsening symptoms starting in early Aug. 2010.  I was finally diagnosed by my LLMD 16 months later in Dec. 2010.

This document was really helpful for me in understanding the disease.  
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Another helpful tip is to google Lyme and a symptom, such as "Lyme vision".  I found all kinds of articles and message board posts where I could compare what I was experiencing to see if it 'fit'. Every time I got a new symptom I did this and sure enough, every one of them popped up as a Lyme symptom. (Even the anxiety!)

[melanie344]

Oh My Goodness, Thank You so much. That was so informative and actually made me want to cry. I dont even remember the last time I actually felt 100% healthy. I want it so bad I can taste it (if that makes sense). I remember when I was a little girl and felt healthy and I think of myself now and it is so depressing. My family too thinks im a hypercondriac and that im just making things up and tell me its anxiety. I am seriously afraid for my life over here and I cry frequently. I dont want anything more in this world then to just feel healthy. Thank You again So Much, & God Bless All Of You. ♥♥♥♥  

[Ricobord]

You really do sound like a case of late stage Lyme.  And people who have been sick a long time are more likely to test negative.  Lyme is immunosuppressive and it evades and hides from antibodies, leading the body to produce fewer antibodies over time.  

The blood test result you describe sounds like a Lyme titer, which is the result of an ELISA test.  You have a low positive, which indicates your immune system is putting up a weak fight.  A high positive is more common on someone who is less sick because their immune system is putting up a big fight.

Ask your doctor for a copy of your WB results.  If it doesn't show specific bands, then ask the doc's office to request them from the lab.  Many people with Lyme test "negative" according to the CDC surveillance criteria, but then show other Borrelia specific bands that indicate infection.  I showed Borrelia specific bands on my IgM WB, but not enough to be CDC positive.  No ID doc would ever have diagnosed me with Lyme with my results.

You could also ask your doctor to authorize testing at IGeneX, a specialty lab that does more advanced testing.  www.igenex.com   IGeneX found my Lyme antibodies in my IgM and also found Bartonella, a common coinfection.

There is also an immune system marker that is often low in only Lyme and HIV patients.  It is called a CD 57. You could ask your doctor for this test, too.

You need to find an LLMD as soon as possible so you can get treated properly.  You could also have coinfections making things worse.  A good LLMD will know how to look for them.

As for the HSV, my PA told me that there are a handful of viruses that commonly flare up in a Lyme infected patient.  Just as Jackie described, they live in our bodies forever, under the control of the immune system.  If the immune system is compromised, they take advantage of the opportunity to flare up and make you feel worse.  These viruses include HSV, HHV6, HPV, EBV, and cytomegalovirus.  You can get HSV orally... If you get it orally, you can transmit it orally.  A positive result can imply a recent infection, but it can also imply a compromised immune system, which is the case in a long standing Lyme infection.

Ask your hubby if he would be wiliing to read a book that would help him understand your condition and the reality of the state of medicine regarding Lyme.  It is called "Cure Unknown" by Pamela Weintraub.  It is very well researched and written. She is a reputable science writer and editor with personal experience with Lyme in everyone in her immediate family.

There is also a documentary called "Under Our Skin." It shows some scary stuff, but it ends with hope as the featured patients get better with treatment. My mother, a retired nurse, was quite skeptical of my complaints and didn't understand how sick I really was.  She became so much more supportive after I showed her the documentary.

Keep us posted!  We are all rootimg for you!

[melanie344]

Thank You again for responding. The recent exposure i was talking about was for the HSV, and I dont share anything with anyone, nor do I sit on public toilet seats or anything and thats why I am so boggled as far as that. My OB stated it is a recent exposure, I have never had any kind of sore in my entire life. The IgG for both tests were negative, which I assume indicates that I haven't been infected long. Except for the Lyme which the test was negative for IgG and IgM. I found the tick on my and had to pull it off from my hairline when I was 12 years of age, I am now 24. The doctor then tested me and it was all negative, plus she stated it didnt bite me. Do ticks stick? I mean it didnt hurt when I pulled it off, but It felt as if it has suction cups for feet. It stuck to me but I dont really know if i was bitten. Yes I am aware that HSV is viral and LD is bacterial which inturn would most likely not be connected. When my mother was young she went through semi-similar issues and he Lyme test had the same results but had never been infected with LD, she was diagnosed with Mono/Ebstein Barr/Fibromyalgia.  

[JackieCalifornia]

I haven't done much reading about HSV (Herpes virus) as correlated with a Lyme infection, but I would doubt that they are related to each other.  Herpes is a virus; Lyme is caused by bacteria -- two completely different kinds of organisms.  HSV can be transmitted orally (common in children), and it's entirely possible from what I have read that someone can have Herpes (showing up as cold sores) but that the body's immune system suppresses it for the most part.  If however you get an additional illness (like Lyme) that stresses and overloads the immune system, then it could give an opportunity for the Herpes to create an outbreak.  It's like having not enough firemen (= immune system) to fight a lot of fires (= infections) breaking out at the same time:  makes it easier for the previously suppressed infection (Herpes) to have an outbreak.  And btw, sex is NOT the only way to get Herpes.  Sharing cups or spoons, kids slobbering on toys, kissing, you name it.  It's a virus.  Its job is to spread itself far and wide.  

I'm not medically trained, but I have read nowhere that Herpes and Lyme are connected in any fashion.  Lots of people have low level Herpes infections that give them outbreaks sometimes, often, seldom, or never.  It just lurks in the body until the immune system is stressed (like by fighting Lyme) and then you can get an outbreak.

You say:  "My OB stated that the Igm  idicates a recent exposure within the last eight weeks or so."  If he is referring to the Lyme test, then he may be correct.  There is no magic 8 week cut off, but yes, IgM is the first antibody your system produces against Lyme.  I hope your doc is treating you, and for longer than a couple of weeks.

You also say:  "I have never been exposed."  I assume you mean exposed to Lyme.  Unfortunately, Lyme is everywhere and it is very easy to be infected without knowing it.  The ticks that carry it are so tiny that it's easy not to see them.  I never saw the tick(s) that got me, and many of us don't either.

You say:  "Its really odd to me that the two tests are in the same decimal range, and i personally believe they are connected in some way or another but no one is able to give any insight in that prospect."  I assume you are referring to the HSV test and the Lyme test.  That the two tests have similar numbers is meaningless because the tests are measuring different things.  For example, a person may be 6 feet tall, and a piece of wood may be 6 feet tall, but it doesn't mean the person and the wood are related to each other in any way.  

Hope that helps.  Best wishes --  

[melanie344]

Thank You so much, I really appreciate your responses. These posts were very helpful to me. Would LD cause a false-positive for Img result of 1.34 for HSV? The 1.49 result was the level on my Lyme test. What concerns me the most is the symptoms I am having and they seem to be becoming debilitating as well as leading to other illnesses. My husband is fighting with me about the HSV result even though I know hes the only one ive been with. Im pretty positive that im the only one hes been with as well. My OB stated that the Igm  idicates a recent exposure within the last eight weeks or so. I have never been exposed. Its really odd to me that the two tests are in the same decimal range, and i personally believe they are connected in some way or another but no one is able to give any insight in that prospect. I Thank You both So Much for the very useful information provided. I wish you guys the best of luck as well..  

[mojogal]

I agree with Jackie, you need to find an LLMD. I am pretty strong on my feelings against the Infectious disease doctors because of personal bad experience. Your symptoms are all too familar but the LLMD has most likely seen cases like yours so I would go in that direction if it were me. Feel better

[JackieCalifornia]

Sorry to hear you are feeling so lousy -- I would do what you are doing, to track this down, with one difference.  You say:

"I have finally found a Infectious Disease Specialist ...."

There is a split in the medical community about how to diagnose and treat Lyme disease, and infectious disease (ID) docs are among the groups of MDs who do NOT often diagnose even obvious cases of Lyme, who often do not test for other infections the Lyme ticks frequently carry, and who (if they do diagnose Lyme in you) often do not treat fully.

The tests used by ID docs to diagnose Lyme are often not very accurate -- the IgM and IgG tests you had that were negative are OFTEN negative if you have been infected for a long time, as it sounds you have been.  

A Lyme specialist, on the other hand, (1) could diagnose you based on history and symptoms alone, but would probably run certain tests other docs may not use; (2) would test for other diseases if your symptoms warrant; (3) may well use tests other than the IgG and IgM tests; and (4) may give you a short course of antibiotics and then rerun the IgG and IgM tests, because that may cause your immune system to wake up and start reacting again (it's called an 'antibiotic challenge').

I just searched online for:

lyme florida

and got lots of links to Lyme patient groups that can refer you or suggest names of Lyme specialists in your area.  You will see the term LLMD, which is not an official designation but only an abbreviation we patients use to indicate a doc who understands Lyme and takes it seriously ... short for 'Lyme-Literate MD.'

Also you can send an email to:

contact [at] ilads [dot] org

and tell them your locality (like Miami FL, or Tallahassee FL) or what area you can get to.  They will send you the names of some LLMDs in that area.  (ILADS is International Lyme and Associated Disease Society, which is the main voluntary group of LLMDs.)

You might want to go ahead and see the ID doc you have an appointment with, because you never know how openminded a doc is till you consult with them.  Then if the doc blows off your concerns, look for an LLMD.  Or, you could, while waiting to see the ID doc, do your research to locate an LLMD and be ready to see him/her if the ID docs doesn't take you situation seriously.

If you did not get a copy of the positive test result, I would do so, and start keeping your own set of test results.  Getting them later from a doc can be difficult to impossible, and having that historical data may be use to a doc later.

Let us know if we can help further -- best wishes to you --

(The other test you mention, with a 1.49 result, is one I am not familiar with.)

[melanie344]

I forgot to list my symptoms, which consist of memory problems, muscle weakness, concentrations problems, constant fatigue, muscle fatigue, speech problem, flesh colored dry patches up both of my arms and under my breast plate, over all cognitive reduction, three new tiny moles the size of a pencil tip brown and flesh color mix, vertigo like symptoms, dizziness, lake of energy, Bipolar symptoms, vibrating sensations through out one part or whole body, heart palpitations, tachycardia, shortness of breath, vision problems (seeing different colored spots red, orange, blue, white, black, green, etc.), over all sensitivity to surroundings, seeing shadows and movement through pereferal vision when nothing is there, numbness and tingling, muscle twitches in face and extremities, shooting pains throughout body and head, neck stiffness, muscle pain, back pain, frequent constipation with lower abdominal pain, and more i cant seem to remember or think.