Need some help determining if this is Lyme

[Ree4tu]

I am usually over in the Fibromyalgia forum, but I have recently been going to a Fibromyalgia and Fatigue Center and the doctor there suspects Lyme although the tests are negative.  I plan on having the Igenix test next.  I also have reactivated EBV which my understanding is dormant viruses can reactivate with Lyme Disease. The doctor would treat me for Lyme based on my clinical symptoms, but wants to treat the EBV first and see if I get better.  The problem is the treatment for EBV is 6 months and I would rather treat the Lyme now, especially if this is what reactivated my EBV.  He saws the treatment for Lyme once you have had it over 90 days is 3 months of 3 different kinds of antibiotics at the same time.

I am concerned because I have had symptoms which began in July 07.  I do not recall being bitten by a tick.  My symptoms begin with a mild flu-like feeling (which I thought was just a flare-up of my Chronic Fatigue), then went on to neck pain, then a stiff neck, then muscle twitches in my legs. It was then I was diagnosed with Fibromyalgia. After a bad virus in March of 08, my symptoms got even worse.  I then had panic attacks, insomnia, heart palpitations, more muscle stiffness, spasms, and pain, joint pain, nausea, weight loss due to nausea, swollen glands, sore throats, low-grade fevers and rashes, menstrual problems, dizziness, chills,bowel problems, short-term memory loss, and the list goes on. I also have hypothyroid as a result of all of this.

I have also been on and off antibiotics for other infections (not Lyme) which I am fearing interfered with my Lyme test results. So I guess I have three questions...What are the symptoms when Lyme is deep within the Central Nervous System? How long should you be off antibiotics to ensure the Lyme test doesn't produce a false negative? Is the 3 month multi-antibiotic treatment effective?

Thank you,
Ree4tu

[JackieCalifornia]

I'm late to the party to respond to your comment a while back:

"Here is a link to a commentary supporting that many supposed Lyme cases may be FMS:

"http://ije.oxfordjournals.org/cgi/content/abstract/dyi180v1

"I myself get a knot in my stomach reading this ...."  

I have now read the article, and it's by Leonard Sigal, a prizewinner in the field of contempt for those with Lyme.  The book 'Cure Unknown' mentions the good doctor, and all I can say is, don't waste the brain cells on thinking about him.  Too much negativity in trying to parse his snotty comments.  

Think *good* thoughts.

[patsy10]

I concur with Ree4tu.  Anyone diagnosed with CFS/FMS should look into lyme.  These syndromes (they are not diseases) are symptoms of something else.

[Ree4tu]

Yes, it feels like my muscles are seizing up at times.  The neck stiffness is the worst.
I have no Lyme Diagnosis yet, but my doctor ordered a CD57 which I guess if this count is down could be indicative of Lyme.  I still haven't had the Igenix test. My Western Blot is completely negative.

I am currently seeing an alternative MD who is doing IV treatments which consist of high amounts of vitamin C and a few other vitamins. I understand that vitamin C can help treat Lyme. I have been feeling a lot better with the IVs and some other natural supplements for my immune system.  I am on a low dose of doxycycline right now also.  I am thinking if this is Lyme, it is a reactivation or relapse of symptoms and I probably had it for a long time, but I don't know for sure. My doctor believes in building the body up to deal with possible Lyme and get it under control or dormant, along wth the EBV.  He says there isn't a cure for Lyme.  I am sure others have different opinions on this, however and some may have been cured if it was caught early enough, but this issue remains unclear to me.

If it is Lyme, you need to take a different approach to treatment than the ones typically used for Fibromyalgia.  I would suggest for anyone diagnosed with Fibromyalgia to look in to Lyme.

[wonko]

I don't think you should fear a Lyme diagnosis more than a fibro diagnosis, for all the reasons patsy10 said.  With Lyme, the cause is known which means treatment is better tailored and more likely to succeed.  Often with fibro, symptom management is the best outlook, while with Lyme there is hope to recover!

I totally feel like my body is seizing up some days.  If I am still for long (like when I sleep, or sit at my desk, or in a car ride) the inflammation sets in and it gets very uncomfortable and difficult to get moving again.

I get flares in my symptoms.  Sometimes I don't know why, other times it tracks with my cycle or a stressful event.

[patsy10]

I'm more afraid of not knowing what it is for sure than a lyme diagnosis.  Remember, fibromyalgia is syndrome, a group of symptoms with no known cause.  It is not a disease.  So a fibro diagnosis really does not tell us anything except that we have symptoms.  Fibromyalgia means fibro=fiber, myo=muscle, algia=pain.  So we have fiber and muscle pain according to this meaning of the word.

[jason80]

It's a frustrating dilemma since there is no reliable test. If one is searching for any evidence that they have Lyme then you will get it through any blood work, the normal population will show some bands too.  Being diagnosed with Lyme seems to be easier than other illnesses because a pure clinical dx can be made, and Lyme has a long list of symptoms to fall into.

Of course, EBV dx has similar issues since much of the population would test positive for it too, but it seems like there is a higher threshold with the labwork to make the dx.

The comment that Lyme may induce reactivation EBV may be true, but I fail to have much confidence in this assertion when we don't even have a blood test than anyone has confidence in.

[gorbybelle]

I too was diagnosed with Fibro.  but I do recall a tick bite.  I have all the same symptoms as you.  I could have written your post!  Thing is I never had any of this 'stuff' untill after the bite!!  I hope it's fibromyalgia because Lyme scares me.  I get flare-ups sometimes they only last a couple of days but mostly its continuous.  Neck pain and stiffness are worst for me but the depression is getting more intense .  Do you feel like your body is ceasing - up? that's the best way I can describe this.  All the Best.

[Ree4tu]

You are so right about your diagnosis depending on which kind of doctor you see...It gets so overwhelming.

I am currently attending a Fibromyalgia and Fatigue Center (one of several around the U.S.), which treats anything that may be linked to Fibro, including Lyme. They believe in trying to treat the causes of these illnesses vs. the symptoms.  They look at the entire picture, not just pieces. I am putting a lot of faith in them, since I have given up on my other doctors.

My Western Blot was all negative and I was negative for co-infections. I am going to have the Igenix test done tomorrow just for a more thorough exam.

Thank you for the info and I hope your treatment is successful.

[wonko]

I can relate to the confusion.

Before I saw an LLMD, fibro was thrown around as a possible dx for me.  But no two doctors I saw could agree about if I had it or not, and I got so much conflicting advice!

In your situation, you are probably aware that your diagnosis may end up depending on who you see.  This is the difficult situation in which so many of us end up being.

Some doctors think that many Lyme patients really have FMS.  And of course, there are the other camps that think many FMS patients have Lyme!  I don't think we all have the same thing, but I do think there is a lot of symptom overlap, and that since both conditions are contested, the burden falls on us patients to figure out what path is best.

Here is a link to a commentary supporting that many supposed Lyme cases may be FMS:

http://ije.oxfordjournals.org/cgi/content/abstract/dyi180v1

I myself get a knot in my stomach reading this, as I've decided to aggressively treat my Lyme.  I did end up having a couple of bands in my Western blot, but I am CDC negative and had several negative ELISA screens and negative CSF (lumbar puncture).  

If you want to seriously explore Lyme diagnosis and treatment, you'll probably need to seek out a doctor specializing in it.  Just as some doctors don't know much about FMS, lots don't know much about Lyme, either!

Good luck and take care.

[runner473]

This is a list of things that may cause a false negative seronnegative test result

http://www.anapsid.org/lyme/lymeseroneg.html

[Christina1978]

Im not a dr and dont know if there is any truth to this and was not tested while taking antibiotics but from what I read else where and had other people say if you are on or have taken antiobiotics Wait 10 days (no meds) then test.

It is supposed to prime your system to post an immune response. Thus, increasing the possibility of more positive bands. You need to time this though cause as it was explained to me lyme is a spiral bacteria and hides throughout the body. When you take antibiotics it starts to kill the lyme releasing it and making you form the antibodies for it that the test can pick up. What I myself did was get a western blot through my dr. office and find out what bands I was reactive to because the test at igenex was very expensive. 1100 total. I did that so i could see for myself before I spent that money and they do not file with insurance. But when I found out which bands I reacted to I learned some of them were lyme specific but was considered negative to them. I then from there got a llmd and had a test done at igenex. Which was cdc postive and also came postive for a coinfection. I though was not on antibiotics for any of the testing.

[Ree4tu]

Thank you for your responses...I just really want this all to go away or at least some of it!

Ree4tu

[patsy10]

There is a good symptoms list in the health pages here under Dr. Burrascano's treatment guidelines.  Also you may want to look there under Dr. Crist's website.  There is very good info.  The links are in the health pages.

CNS lyme can cause a mulitude of symptoms.  Some are numbness, tingling, brain fog and all other cognitive symptoms like trouble with remembering etc..., weakness, MS- like symptoms with paralysis, twitching, blurred vision, sleep disorders, anxiety, depression, panic attacks and more.  All of the symptoms you described above are consistent with lyme.

My  understanding is about 4 weeks off meds for testing.  Many doctors will try an antibiotic challenge for a week or so then test after being off like 3-4 weeks.  The links I recommended above have good information regarding this.

I personally think the 3 month treatment is not going to be enough.  I noticed no improvement until about 4 months.

I think the lyme test (Igenex) should have been done first.  My thoughts are that viruses are difficult to treat anyway.  If you have lyme then the EBV activated because of immune suppression.  If the lyme is treated first then the immune system should be able to improve enough to put the EBV into remission.  Also, six months is a long time and a lot of money when the actual problem could be something else.

This is just my opinion.  I am not  doctor.

[PlateletGal]

I can't answer your questions, but I thought you and maybe others... would be interested in these articles by Professor Garth Nicolson (The Institute of Molecular Medicine)

Click on "CANCEL" when it asks you for your username & password:


"Chronic Fatigue Syndrome Patients Subsequently Diagnosed with Lyme Disease Borrelia burgdorferi: Evidence for Mycoplasma species Co-Infections"

http://www.immed.org/Fatigue%20Illness/fatigue%20Illness11.23.08/Netal-LymeJCFS2008.rtf

“Lyme Co-Infections in Neurodegenerative and Neurobehavorial Diseases"

http://www.immed.org/whatsnew/whats%20new%2011.23.08updates/Nicolson-ILADSabstract1.rtf


If you can't C & P the URL, consider googling the name of the study. ; ^ )