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

[JackieCalifornia]

Welcome to MedHelp Lyme --

You might not get responses to the three posts you made on this message thread, because they were posted almost 5 years ago (Jan 2008).

I would suggest you start a new thread of your own with your questions, and you may then stand a better chance of getting a response.  To start a new thread, click the orange 'post a question' box near the top of this page.

Also, we do not normally post MDs names in the open here, because it can often be unwanted publicity for docs who are under scrutiny by local and state medical boards who believe that Lyme is not a serious ailment.  If someone has a suggestion of a Lyme specialist, it would normally be sent to you via private message through this website.

Again, welcome --

[MaryLynn1959]

Who is the doc,I need him!

[MaryLynn1959]

Thanks,I cannot get out of bed without Vicodin!

[MaryLynn1959]

You must order your test from Ignex lab in California,reg test done by your doc with give false neg.results

[JackieCalifornia]

No need to apologize!  It takes a while to get used to the way the website works.

So, you can go to your earlier message, highlight and copy it so you don't have to rewrite it, and then create a new message ['post a question'] and paste in the copied text.  That way your inquiry will get noticed more.

It's up to you, tho.  :)  No worries.

[Juttin3]

Ok thank you. Sorry about that.

I

[JackieCalifornia]

PS, you can also post a NEW message on this site.  This thread that you posted on is pretty old and they sometimes don't get read thoroughly.

Go to the top of this page, and you will see an orange colored box that says

                                          POST A QUESTION

Put in your question there, with a title like:

                            Need LLMD on Long Island NY

And then put a message like the one you put on this message thread.  That way it will catch people's eye.

[JackieCalifornia]

Welcome to MedHelp.

To find a Lyme specialists who takes a thorough approach to diagnosis and treatment, you could send an email to:

                     contact [at] ILADS [dot] org

Tell them where you are located and how far you can travel.
====================================================
Also look online at

                     Columbia-Lyme [dot] org

That's at Columbia University in Manhattan.  I don't know if they are pure research and don't have any facility to treat or refer patients, but it's an idea and will get you into the loop for finding an LLMD (patient slang for a Lyme Literate MD, meaning one who 'gets' the concept of Lyme as the misery that it is.
============================================
Don't give up!  Let us know if you need more information, tho I don't think we have anyone posting here currently who lives on Long Island.

I went through 20+ docs before I was diagnosed and treated, and I'm fine now.  It took finding an LLMD to make it happen.

Best wishes -- and Don't Give Up!   Keep us posted --

[Juttin3]

Living on long island and having lyme is worst. Doctors dont treat it and dont know about it. One of the most tick infested areas. Unbelievable these doctors. Ive been to 8 now and no treatment for 3 years.

[JackieCalifornia]

Have you consulted a Lyme specialist for an evaluation of your situation?  If you think your symptoms could be Lyme, then that's what I would do.

[Christine49]

I was diagnosed with lyme in Oct. 2010 ,treated with months of antibiotics but continued to get worse with incredible pain that persists, I"ve also had trouble swallowing severe neck pain, severe throat pain severe headaches, numbness, many many missed periods, brain fog, sound sensitivities, crying spells muscles twitching, weird crazy rashes, all kinds neuro issues, its been a nightmare, been to all kinds of docs, I"m scared to grow old like this , I feel like death many days. But it is systemic and can affect any body part, it also moves around and causes severe pain!  

[Ricobord]

My LLMD has a chapter in a well known book on Lyme treatments, and he says that he typically treats patients for 9 months to four years.  If you've had multiple courses, then the Lyme spirochetes have had a chance to multiply again every time you have stopped antibiotics.  And 9 months of IV is a bit on the short end. It sounds like you have been undertreated for years and are still suffering from a persistent infection.  

I suggest finding a new doctor.  LLMDs have learned a lot in the last 10 years.  Good luck!

[Ricobord]

Definitely find an LLMD to get checked out.  Lyme does not go away by itself, and while it has been known to go into hiding with periods of relative wellness, it's still there and can reemerge any time until treated.  Antibiotics are much better than chronic pain!

[mojogal]

I am currently in a state where NOBODY believes in Lyme and they tell you things like, Lyme is just what they tell you when they dont know what you have and you dont want that label. I am moving to FL where there are LLMD's but I found groups on Yahoo and Facebook for support groups for the state I am in now and one for the state I will be in so you may want to try there. It is very hard, we have all been through it feel free to write us for support, I have been too ill to be on much but Jackie and others are always around.

[JackieCalifornia]

Sorry, I don't.  Just digging around on the internet would be my way to look for someplace like that.  Or you could post a new message on this site and ask the same question -- this chain you've posted on is four years old, and the title is 'chronic pain post lyme patient', which would not necessarily cause people to read all the way to the bottom and find a post about looking for a support group.

You might try a new thread and call it 'Lyme suppport group in Dallas TX?' or wherever you are, or 'Lyme support group online?'

Hang in there, we all have bad stretches, but it gets better.  You gotta trust me on this one, but definitely get some support.  That's a good thing to do.

[boatgettingtoosmallforusall348]

Do you know of any chat room or support group on line or does anyone?  I've been esp very very down lately and need a little support right now.

[JackieCalifornia]

I know what you mean about the loneliness of Lyme.  It happens to all of us in one way or another.

For some, it's the inability to participate fully in family life; for others, it's work that falls apart.

Lately, now that I am my old self, I have been trying to reconnect with old friends who haven't heard from me for about 5 years.  It's awkward, trying to figure out whether to tell them I've been sick or not, and I'm pretty much not telling. People who haven't encountered Lyme just don't understand, so it's meaningless to them.  It's like someone telling you they were kidnapped by Martians and held captive for a few years -- not only would you not understand, you'd think (quite reasonably) that they were nuts!

You're among friends here, so know that you are not alone, and there are docs who understand too.

[boatgettingtoosmallforusall348]

What's amazing is when I went to my old orthopedist just yesterday and told him that I had read, only after he had given me two rounds of steroid treatments for the pain, that he should not have given them to me because of the chronic lyme.  He asked where did I hear that, that he had never heard of anything like that . I told him that it's in almost every reference to lyme I've read on the internet. In fact, as I read more and more about it, it looks like the one thing that most drs. do agree on.

To me, the worse part of it all after all these yrs is the loneliness of it all.  No one "getting it" so you just stop talking about it.  Start becoming a recluse when the pain is at its worse so no one sees you and you don't bother your family with it.  

[JackieCalifornia]

Thank you for posting.  

I agree with you about steroids, because they suppress your immune system, which needs to be fighting the infection.

It's never too late to seek treatment, so I understand, and there are many MDs in your part of the country who understand Lyme.  Even if you do not wish to take antibiotics for some reason, there are herbal and other therapies that may help or at least ease the pain.

Let us know if we can help you find a Lyme specialist in your area.

Best wishes --

[boatgettingtoosmallforusall348]

Unfortunately, when I first had symptoms of lyme, there was very little known about it (or for that matter even believed there was such a disease)!  I had four small children, and a company I had built over 20 years and had just started doing very well, grossing over $500,000/yr.  Needless to say, I was not feigning my symptoms.  Yet, dr. after dr. kept on telling me they could find nothing wrong, and some even suggesting seeing a therapist, which I ultimately did.  To my amazement, I had an outbreak and shown her at one of our visits.  She told me it was PSYCHOSOMATIC, not even suggesting that I see a dr. while the rash was visible.  After SEVEN YEARS - SEVEN YEARS -- a dr. finally gave me a blood test for lyme.  When I went to the ID dr., he said it was the second worse case he'd ever seen.   During those yrs., it was the loneliest time of my life.  It got to the point where my family didn't even believe me any longer and even all got together for an INTERVENTION to have me admitted to a psychiatric hospital.

Now for the last ten years, I have had to live with the symptoms, which  Iwill have to live w/for the rest of my life.    During the seven years of being undiagnosed, I went through early menopause (43), had my gall bladder infection and removed, arthritis, bone spurs, chronic depression, an MRI has shown brain damage, and the list goes on and on., and I lost the company I had put my heart and soul into to build to what it was.

So, yes, for the past SEVENTEEN YEARS, I've had to endure the pain - (the seven before it was even diagnosed,w hich was much worse because the drs. even get you to start believing you're crazy)  

ONE VERY IMPORTANT THING:  DO NOT, DO NOT LET DRS. GIVE YOU STEROID INJECTIONS OR TAKE STEROIDS.  THEY REACT W/THE LYME AND INCREASE AND PAIN AND SPREAD THE DISEASE TO EVEN UNAFFECTED PARTS OF YOUR BODY.   LITTLE IS STILL KNOWN ABOUT THE DISEASE, AND UNFORTUNATELY, I HAD TO LEARN THE HARD WAY WHAT NOT TO TAKE OR DO.  

From a Fellow Sufferer

[JackieCalifornia]

Here's another, more recent article (2010) linked through that pubmed page:  

JRSM Short Rep. 2010 Nov 25;1(6):56.

"A case of Lyme neuroborreliosis with bilateral recurrent laryngeal nerve palsy."

By Furtner M, Patjas M, Frauscher B, Schmutzhard E, Willeit J.

Source:  Department of Neurology, Innsbruck Medical University , Innsbruck , Austria.

PMID:  21234119    [PubMed - in process]      PMCID: PMC2994358

[JackieCalifornia]

Welcome to MedHelp -- I am sorry to hear about your sister's suffering.

No one here that I know of is medically trained, but we are happy to pass along things we may have read, heard or encountered.

I just searched on google the phrase "lyme disease swallow" [but without quotation marks], and it pulled up quite a few items that might interest you.  One of them, about a dozen entries down the page, is an article called "Otolaryngologic aspects of Lyme disease" written in 1991 -- now a very long time ago, but perhaps of interest.  I could not reach the article by clicking on the link in that search result, but by pasting the name of the article into the search box, it took me to PubMed, with this abstract for the article:  

"Lyme disease is a systemic illness caused by the spirochete Borrelia burgdorferi and transmitted by the bite of a tick in the Ixodes ricinus complex. While the illness is often associated with a characteristic rash, erythema migrans, patients may also present with a variety of complaints in the absence of the rash. The otolaryngologist may be called upon to see both groups of patients, with any number of signs and symptoms referable to the head and neck, including headache, neck pain, odynophagia, cranial nerve palsy, head and neck dysesthesia, otalgia, tinnitus, hearing loss, vertigo, temporomandibular pain, lymphadenopathy, and dysgeusia. We review our institutional experience with 266 patients with Lyme disease, 75% of whom experienced head and neck symptoms. We also summarize the diagnostic and treatment modalities for this illness.

"PMID:  2041438  [PubMed - indexed for MEDLINE] "

If you look to the right side of that same page where the summary (pasted above) appears, there are links to other articles of possible interest, including "Lyme Disease:  a review for the otolaryngologist" and "Ear, nose and throat manifestations of Lyme Disease" and at least one more, with links to get to those articles, all of which are also about 20 years old.  (Interestingly, one of the authors of the article first mentioned above in this post is one "G. Wormser", who is well known as an adherent to the concept that Lyme is hard to get and easy to cure with a couple weeks of antibiotics and boom you're done.  Wormser and others have staked their careers on that approach and apparently do not wish to revisit the issues involved, but that doesn't mean he and they haven't done some good observational work in the meantime.)

Once you get into PubMed and figure out how to navigate around, you'll likely find more articles as well.  You don't say what kind of doc your sister is currently seeing, whether still the LLMD or others; many of us have found that non-LLMD docs (who are not aware of the broader view taken by LLMDs of the broad symptoms and effects arising from Lyme) often are not able to diagnose ailments brought about by long-term Lyme infections, because they are not trained or educated to do so.  

My personal approach would be to research as much as I could, looking for articles such as those mentioned above, to print them out, check to see if there are other articles contradicting or supporting the findings in those articles, print those out too, do your own analysis of the situation, write up a summary, and take it to the most open-minded ENT your sister has consulted, or ask the LLMD to please review your research and suggest who to consult.

In other words, I would continue doing what you have already done, which is keep pressing the issues with the docs, do the research for them, and keep going back to them.  If they seal their ears and eyes shut, find another ENT with an open mind who can be educated and work with your LLMD.  No, medicine should not be run this way, but thank heaven for the internet!  Your sister is fortunate to have you watching out for her.

Best wishes to you both -- let us know how it goes -- or if we can help further.  And you might start a new thread rather than tacking onto the bottom of this one, which is pretty old.  If you start a new one with a description like "Swallowing problems in Lyme", you might catch the attention of someone who has information for you.  Just copy and paste the message you wrote above that I am replying to, and start a new thread with it.  You'll get more visibility that way.

[sailinghere]

My sister has been diagnosed with Lyme, (after seeing LLMD, having appropriate Igenex tests, etc ).  Her originating symptom and main problem is her voice/swallowing.   Her voice became unintelligible as she could not form the words and now she can make little sound at all.   She went from eating okay to only tolerating fluids/purees, and now has a G tube in because she was not able to take in enuf nutrition.   Now she does not swallow any food or liquids except very very occasionally some ice cream.  

She does not fit an ALS or bulbar ALS pattern either.    Her limbs have been fine.   Her strength is affected by her lack of strength from poor caloric intake.   Cognitively she is still the very bright intelligent woman she always has been.  She is not responding to various potent antibiotics and has gotten worse while using them.   If anyone has any knowledge of any one else with these symptoms, or any suggestions at all, we would be very thankful.   She has been to see more than one LLMD and they are baffled.   Thank you much.

[RobAKai]

First, it is virtually impossible to diagnose Lyme with only blood tests.  That is why it is important to go to a doctor who understands Lyme.  Blood tests can confirm clinical diagnosis, but even then, they often do not give positive results until Lyme treatment has been started.  

Because of the nature of Lyme and the fact it lives deep withing the tissues, until you begin to force it out of its "hiding place", you will not see evidence in the blood.

More important VERY IMPORTANT!  If you do not go to a doctor who understands Lyme, and you are given steroids, you will find yourself in worse shape that ever!   All too often, people with Lyme are diagnosed with several illnesses until the truth is discovered.  Over the past 20 years, I have been diagnosed with ALS, Lupus, M.S., Fibromyalgia as well as several other diseases, and when the list has been exhausted, it started over again many times.

Because we are talking about misdiagnosing Lyme with AutoImmune diseases, Lyme patients are often treated for said AutoImmune Diseases, which, by definition, is the body's own immune system attacking iteself.  Therefore, steroids are given because they keep the immune system "in check"... Lowering the immune system is the LAST thing a Lyme patient needs ... in fact, it is dangerous and will only make the disease progress and symptoms increase.

Do plenty of Lyme research and do not be afraid to ask your doctor questions.  If he fails your test then  you need to keep looking for another doctor.  Treating Lyme incorrectly is as big of an epidemic that Lyme itself.  It is a myth that Lyme is a short term, easy to treat, mild illness.  It is painful and can be deadly.  I have had it for many years.  Treat early and treat with agression, the later the diagnosis results in late treatment which results in SUFFERING BEYOND BELIEF!

Also, all too often Lyme patients find it difficult to get proper pain managment because it takes very strong narcotics to even make a dent in Lyme pain.  If you find a doctor who will give you what you need to deal with the pain, do not skimp on your pain meds.  Personally, I tend to suffer when I don't need to in fear of addiction.  But when I reach a point where self-induced death seems like the only way to make the pain stop, it is then I realize, even if I become addicted (and people in pain are not at risk of addiction, it is people who continue to take pain meds after the pain as stopped that become addicted) it is a choice of taking massive amounts of medication or killing myself.  

Live today.  Make it through today.  With advanced late stage Lyme, the only thing you really need to worry about is getting through today.