chronic pain post lyme patient

[entarage]

hello, i am a 43 year old woman who is in remission of chronic lyme disease, however my pain is getting worse the past year.  i was diagnosed w/ lyme in Feb. 2001, did many courses of abx and even did intravenous abx daily for 9 months back in 2002.  Since then i have been up and down with symptoms of pain and have been in pain management.  I had a year or so that I was stabalized, but the past year has been getting worse for me.  

The pain consists of hand numbness upon waking, a stiff , extremely painful spine which can not bend upon waking, neck, back, arm, torso and leg burning pain.  
My current pain management doctor is not very helpful, keeps his visits w/ me about 7 minutes long, and does not offer any other options other than to give me the pain medication (oxycontin, 40 mg, twice daily).  I go to him because he is the only doc nearby who takes my health insurance.  I don't have many options and I am unable to function w/o the medication.  

My lyme doc has stated that i am in remission of the lyme and that the pain must be coming from my thalamus area, the mid-brain, but he says the inflammation would be too microscopic to see on an MRI of the brain, which i just had(normal).  The main problem is that now i have no diagnosis.  I went to see another neurologist, the one who gave me the MRI of my brain, along w/ some other tests, and ruled out Lupus, MS and rheumatoid arthritis.  He said that whatever is wrong w/ me is "out of his realm of knowledge".  

Some people bring up fibromyalgia as a possiblility, but I never really believed that as a diagnosis.  What is the cause? That is my question? If i only knew what was causing this.  My blood work doesn't show anything weird, yet I can barely get out of bed in the morning.
Does anyone have any similar experience?

Thanks for reading this.
Tara

[tmp45]

HI TARA ITS BEEN 4 YEARS OF PAIN WITH ME AND THERE NOW DOING A LYME BLOOD TEST, WOULD THAT FIND OUT IF I HAVE LYME JUST BY A BLOOD TEST THIS LONG IF I HAD IT> ALSO I WAS DIG OF FIBRO FROM A ARTHARITIS DOCTOR, HE DID THE PIN POINTS ON ME AND FLET PAIN WHEN HE TOUCH THEM SO HE SAID FIBRO, IM LIKE YOU EVERYONE COULD HAVE FIBRO EVEN MY HUSBAND WITH PAIN. BUT ITS NO FUN AND LOST OF SYMPTOMS, THEY SAID THAT MY THROID MIGHT HAVE TRIGGERED IT. OH WELL HOPE THIS HELPS TMP45 TKS

[Bellbird]

I don't know whats causing this, but ask for a cervical epidural steroid injection.  It fixed the burning pain down my spine overnight.  As for the rest....

Hope you feel better soon

[Coolio Hernendez]

I have had lymes sience 1987. I have pain all the time. I just quit the pain meds 14 days clean and let me tell you I feel a million times better. The pain meds like oxy cause more pain then they are worth. TRUST ME!!!!!

[tory2457]

I think I might be confused with what your current lyme doc states...Is this lyme doctor a member of ILADS?

I can't believe that a specialist in lyme disease would say your in remission with the symptoms you currently have. Lyme docs understand how difficult it is to rid us of this tricky bacteria. It easily converts from a spirochete to a L form to a bleb to a cyst.....hence the need for treatment.

As for Fibro? many many Fibro patients find a lyme doc and then find themselves on the road to recovery!

You might want to read about LD and all the co-infections that go with it and perhaps change your doctor!

[entarage]

hi tory,
thanks for writing.
yes, he sure is a member and has been a key-note speaker for many years.  he is one of the top few LLMD docs on the east coast-people travel from all over the country to see. he has been treating me for over 5 years now and knows my story very well.  he thought perhaps the babesia was being stubborn but then we ruled that out.

he truly thinks that there is a mid-brain problem, that perhaps was originally caused by the lyme but is currently is not treatable by abx.
further more, he is not going to pretend to understand something he doesn't.  he is there to talk and give advice but right now thinks that i am in remission and that the problem is beyond the realm "lyme treatment".

[tory2457]

hmm,,interesting. I asked because of the Fibro thing coming into question. Fibro along with Lupus seems to be symptoms due to lyme. The University of New Haven held a conference where ILADS docs point to the research supporting this.

Dr. Eva Sapi agrees that abx might not tackle all the co-infections with lyme and she is looking at Mycoplasma as a leading problem. If only we'd have more research dollars.

Has your doctor mixed up your abx throughout the years, and have you ever been on Mepron?

[patsy10]

I have all the pain you describe.  I'm stiff and sore.  I limp when I get up.  My muscles hurt all the time.  I have the spine pain.  I don't take any pain meds.  I just live with it.  I don't know if there is an answer.  I may have lyme disease.  I had 3 bullseye rashes many years ago, went into remission and it all came back 3 years ago.  I don't know if it's lyme or not as my tests are all normal.  I have seen improvement with antibitics.  I have also been told there is no test and no answer to what I have.

[tory2457]

Hi patsy,

Geez, you had 3 bullseye rashes?? and you are not sure you have Lyme disease? Having a bullseye rash is the most definate "test" there is. Testing is very unreliable especially if the rash is more than a few weeks old.

Are you seeing a llmd? and if not what type of abx protocol are you on?
It makes me sad that you think there's no test or answer for you..

It doesn't mean that some folks that did have a rash automatically have symptoms...some of us do have immune systems that can overcome the bacteria; but with that said when you have a rash and then you have "symptoms" ....that's your answer.

the best,

[jinxie007]

The pain meds like oxy cause more pain then they are worth. TRUST ME!!!!!

Ditto!  Get off them!  I withdrew from thoes 2 yrs ago and feel much better.  You have to deal with the pain as it comes and goes.  I do tons of Yoga!  You build a resistance to that drug and need a higher dose and a higer dose and pretty soon you will reach the highest dose and still have pain!  

[Coolio Hernendez]

Good job jinx.

I am 24 days clean now.

I will find another way to deal with LYMES pain.

[winfree]

Try  brain SPECT scan, as it and PET show blood flow. Lyme and other infections have their characteristics within brain. MRI shows structure. I had several - showed nothing. But SPECTs done later did.

[catbird511]

Hi. I was dx with Lyme in July 2006. My blood was sent to Igenx labs in CA. the test came back with 10 bands positive/cdc positive. I've done alot of internet research on the subject and mostly due to stories like yours, I refused all treatment. The thing I do that helps the most is vitamin c therapy. Livon labs (www.livonlabs.com) has a completely bioavailable form of vit c and is the one I use. If you can find a doc that will administer IV vit c at 100 gram levels and 50 gram levels IV push, that would be your best bet. When I stop taking the c, My symptoms get worse. Also, research immune supporting therapies. I also take 1 gram salt tablets available at drug stores upon request. I am still functional though mornings are really rough. I can take the pain but the neuro symptoms are intolerable. The doctors can't help you because they don't know how. Borellia Bergorferi is an insidious complex bacterial organism that modern medicine can not irradicate completely because of the uncertainty of how it reproduces and operates in the human body. Research is ongoing. I hope this helps.

D. Grob, RN

[cog1st]

I see this post was some time ago.  You should know having Lyme you only go into "remission" relapse is always possible and you need to get back to an LLMD and start treatment again...ASAP!

Visit some lyme disease forums, talk w/other lyme patients they will tell you are relapsing.

[sickoflyme]

Hi Tara.  I live like this every day of my life with a few good ones mixed in once and a great while.  I am not able to work, just everyday helping around the house is a major accomplishment.  I was misdiagnosed for three or four years, put on steroids for another disease and got one hundred times worse.  After IV antibiotics, months of bicillin shots, oral antibiotics and every holistic treatment out there I have come to the conclusion Lyme has done damage to my vascular, joints digestive system and everything else.  My spect scans at Columbia in NYC show hypoperfusion throughout the brain.  I even had a chunk of nerve taken out of my foot for nerve biopsy to no avail. Muscle biopsies were essentially normal except for perivasculitis of the skin.  Perhaps this perivasculitis is around all my blood vessels.  That is what it feels like sometimes.
The only thing that helps me is klonipin for sleeping and muscle cramps, hydrocodone for the severe headaches, trigeminal neuralgia and joint pain.  B12 methylcobolamine has helped me a little with energy levels.  It does not hurt to inject yourself.  It is a very small needle.  To this day I do not know if Lyme is still alive in me or it has just done damage to my immune system somehow unknown yet.
I just take it day by day.  The mid back pain which radiates along the nerve around from the back to the chest has always hurt me from when I first got sick in 1992.  Maybe some day there will be a cure or better treatment for this.  The only thing I have not tried is the hyperbaric oxygen chamber.  I am thinking about it.  Never give up!

[patsy10]

I live like this every day of my life too.  I haven't had near the amount of treatment you have had but don't think it would matter at this point.  I think it's chronic and incurable at this point.   Surprisingly, I am able to work.  I really shouldn't be though but I have no choice.  The stress of work and lack of sleep  just makes it that much worse.  I don't take any meds and just live with the chronic pain and stiffness.

[cindy903]

Has anyone tried flexeril for sleep? That's helped me and it also is a great muscle relaxer. I don't like to take anything, but since I have LD, I kind of have to.

[cindy903]

tri-cyclic antidepressants can block pain too. Anyone ever try that? I would if it came to it.

[chicago311]

saw your post regarding the pain meds and I agree, a friend has had chronic migraine for years and just tested positive for lyme. The original infection may have been 20 years ago and flare-ups have come and gone over that time, with the pain and many of the neuro effects mentioned getting progressively worse over the past 5 years. I am concerned that there don't seem to be many positive outcomes from treatment long after contracting lyme's.

Has anyone had success with the salt and vitamin c regimin that has been mentioned? Are there any dietary advice or anything else besides the yoga relieve the pain?

lastly - who is the best Lyme doctor in Chicago?

thanks

[jason80]

I'm curious to hear how your friend tested positive for Lyme so many years after infection.

Was this a clincial diagnosis or test? (I have various Lyme symptoms and also have chronic migraine, but the root cause is not firm.)

[Weesy68]

I honestly do not feel your Lyme is in remission.  I too am finding it hard to believe your doctor is an LLMD with ILADS.  Pain that is similar to the initial infection is considered ongoing infection.  If it is different than ever before that is one thing.  There isn't an ILADS physician or any other physician that can rule out that you do not have Lyme still in your system.  A remission would simply mean it is currently undetectable and the symptoms have abated.  If you still have symptoms, you are most definitely not in remission regardless of what your blood tests say.  Qualified LLMDs do not work off of blood tests alone.  They work off of symptoms and the blood tests are a backup to the symptoms.  Remission in Lyme can only be called such when your blood tests do not show active infection and your symptoms have subsided.  Otherwise, it cannot be called remission.  I think an LLMD would be hard pressed to call it remission with the lack of evidence that any physician has LLMD or not to prove that it is actually gone.  You need a different physician.