A 59 year old female visited me for an evaluation for Lyme disease visited me 9 months ago. She had a past medical history of Crohn's disease and celiac disease. She also had a history of congestive heart failure, resolved, 10 years prior to our first meeting. The cause of the CHF had never been determined. In addition, she had a severe history of muscle disease related to the cholesterol medicine Lipitor 6 years back. The lipitor had caused a severe break down of muscle tissue. The disorder is called rhabdomyolysis; this was associated with acute renal failure which has resolved. She reported a history of prednisone use for 18 months for her bowel disease. A previous physician had diagnosed fibromyalgia. At the time of our visit this once high functioning professional was disabled.
Her complaints included: nausea, fatigue, back and neck pain, blurred vision, diffuse body pains, sensitivity to sound and light, diffuse joint pains, pins and needles, rashes, fatigue, palpitations, sweats and severe cognitive issues. Her cognitive problems included poor focus, slow cognitive processing, short term memory loss, word retrieval problems and bouts of confusion and disorientation.
Her physical exam showed multiple abnormalities involving the nervous system. These included changes in cranial nerves, sensory nerves and upper motor neurons.
Her initial lab tests showed: mild anemia, a Lyme C6 peptide index of 0.27 and a single positive Bb WB band IgG 41. The results were otherwise unremarkable.
The controversies about Lyme disease were discussed with the patient. She was given informed consent. She wanted treatment without any further defining laboratory tests.
She has been on a program of typical oral Lyme medications. These have included: Zithro, Mepron, Amoxil, Minocin, Biaxin, Tindamax and Rifampin.
In her particular case Rifampin has been particularly helpful for reasons that are not clear to me. In general this is consistent with my experience that different antimicrobials work better with individual patients.
To date her improvement has been dramatic. The symptoms which had previously been attributed to Crohn's disease are completely absent. Her muscle and joint pains are nearly gone. She does admit to very slight joint pain at times and sensitivity of her skin. Her energy level is almost normal. All cognitive problems have resolved. The palpitations are gone. The sweats are gone. She is functionally normally and now returning to work in her professional capacity.
Comments: 1) Cardimyopathy- the undiagnosed heart failure could be caused by Lyme carditis. 2) Lyme can cause symptoms of inflammatory bowels disease or cause exacerbations. In this case Lyme therapy has for the time being caused a remission of Crohn's disease. 3) This is the most controversial point: Lyme has been demonstrated to exist in muscle tissues and causes myositis. It has been my observation that some patients who develop muscle pain related to statins(cholesterol medications) can later tolerate the drugs when Lyme has been treated. The reasoning here is that it is the double insult to the muscles of Lyme and the drug that causes the symptoms. When one factor is removed(Lyme) the drug becomes tolerable. Given this patient's history I would never recommend that she try taking this class of medication again. She tolerates Welchol well, which as has been pointed out, also frequently provides benefits to patients treated for Lyme disease.
Alleluia! Or hallelujah?
Anyways, it's motive of celebration! A person who was out of any possible regular common life, due to the severity of a painful illness, has returned to the work force? God is big!
This shows that proper, adequate, considerable treatment makes the wished miracle, but instead of a magic wand we need more Doctors like this who dare to take care of a very ill, very complex symptoms patient. She could barely talk, her cognitive functions were completely diminished, the pain everywhere was unbearable and now she’s almost out of all of that? I’m sure most Doctors won’t believe it. This is a super good news, full of hope.
I know this Doctor doesn't write this blog for us to compliment him, but someone has to celebrate!!! Thank Youuuu! God bless!!! Lots of happiness for her and her family!!!!!
I have a lot of difficult patients as well. I consider them a work in progress. It is easier to write about patients who have experienced success over time. Consistently, the most difficult patients to help are those whom experience excessive autoimmunity during the course of treatment. There exists a significant minority of patients who are very treatment resistant. One of my frustrations is that I lack an effective tool to combat autoimmune responses.
With chronic Lyme disease persistence and trial and error is the key to long term success. Another key problem is that sustaining remission requires at times, very long term antibiotic therapy. In generall, maintenance therapy must follow effective, remission inducing therapy. All too frequently patients decide they are "cured," and go off all antibiotics based on their own assessments.
I see many,not all, return, down the road, having relapsed in various degrees. Some folks just won't believe me and have to find out for themselves, the hard way.
It is difficult to over come the much ingrained belief that long term antibiotics are bad. Believe me, if I had a better tool I would use it.
I have been using Low Dose Naltrexone (taking 4 mg before bed) and it has caused a noticable difference for me when combined with antimicrobials. There are studies that show it helps with autoimmune conditions and that it can balance out a dysfunctional immune system (th2 dominant for example).
I am now responding with stronger herxes to drugs that in the past were just mediocre or didn't produce a response in me.
Now I really herx, there is no question. It does really seem like it switched my immune system "on" and now I see what the "stronger responders" see when they start a drug like Biaxin.
There is research posted at http://www.lowdosenaltrexone.org
I am not affiliated with any of this in any way...the website, etc.
I do know of at least one ILADS member who is using it on some patients.
Perhaps it is an option for some of the difficult patients, because I agree that the immune issues can just seem insurmountable. That is how I used to feel after trying everything including coinfection treatment and IVs without seeing the improvement I wanted.
Then when I started Naltrexone this year, I realized how useful it would have been when I was taking all those well-designed regimens for years that didn't help enough because my body was just not up to the task of killing off the infections.
Now I feel more hopeful.
This a fascinating point. There is a fair body of scientific evidence which describes the interplay between brain and immune responses. The biofeedback between both systems appears to have potent affects related to immune regulation. Lymphocytes and other white blood cells have receptor sites for potent neuro-peptides including endorphin molecules. It has also been established that cytokines, including the well known pro-inflammatory ones such as gamma interferon and specific interleukins can act as neurotransmitters in certain instances. Naltrexone is a narcotic agonist/antagonist. It is primarily used for cravings associated with addictions including alcoholism.
Many LD patients suffer with chronic pain disorders. Many see pain management specialists and regularly take high doses of opioids- which bind to those endorphin receptors. I do believe narcotic use frequently has an adverse effect on patient outcomes. Of course must be managed so it is a double edged sword. Patients do better when they are weaned off narcotics.
It would make sense that an imbalance of the endorphin system would negatively affect immune functions.
Unfortunately many patients with severe autoimmune disorders do not take narcotics.
I don't see naltrexone as a panacea but it certainly warrants study. It is generally a very safe drug. At the described dose one would expect no side effects.
What at issue(in my post) is not the Th1 vs Th2 balance but rather a complex set of immune responses associated with autoimmunity.
Yes, after I put "th2 dominant, for example" in my last post, I re-read it and thought that I should retract that part because I really don't know enough about what is going on in my own body to make a claim like that.
I do know that the Low Dose Naltrexone does seem to be doing something positive in me.
I am not even one of the tick borne disease patients that complains of chronic pain. For me, what primarily remains is fatigue and malaise, though I have had arthritic symptoms that come and go.
Overall I just feel better on the Low Dose Naltrexone; I feel "boosted."
For me it doesn't seem like the greatest merit is symptom relief though, but moreso a tool to help my body kill the infections. One patient on a forum said his "LLMD" told him LDN can decrease recovery time by 40%, but who knows if that is true or just interesting speculation.
When I am already on the "LDN" and I add a new antimicrobial, I get a big reaction. For example, I had been on Biaxin for a very long time with a previous Lyme doctor, and didn't notice much in the way of herxing. I often during that time wondered if my Lyme test was a false positive. (I had not yet been diagnosed with co-infections either)
But after starting Biaxin up again while on LDN recently, within two hours my knees were very sore and stiff, a symptom I haven't had in a long time. Then my neck became stiff. Within six hours my body was hot to the touch, and I felt truly flu-like. To me, this was an amazing reaction after just one pill of Biaxin and I attribute it to being on the LDN.
That is why I really believe LDN has merit for the poor responders. I don't know what it did to me, but now I feel like I have a real immune system.
I am not sure for me if it would produce that kind of reaction to an antibiotic I am already taking the first day I start LDN, only new ones I add because of the "freshness" factor.
I have read a few accounts on message boards of people with chronic Lyme who had severe reactions after taking LDN that seemed "herx like." These people said that even though they were fairly certain it was a herx due to a high infectious load, because of it they were not willing to take LDN because of the intensity.
This kind of reaction seems to be rare though, but I feel like I should mention it in case someone comes across it.
There are very few side effects...only insomnia that I have heard of but I did not experience it.
The best part is that it costs me between $22-$26 dollars a month without insurance! Seems to good to be true. I get it mailed to me because my physician has a compounding pharmacy he likes to use, but it seems like any trusted compounding pharmacy would be able to do it. It just cannot be the "SR " or "slow release" and it is best if kept refrigerated.
Yes, the website does seem overzealous in touting it as a panacea.
I apologize for posting again, but I just remembered that in the book, "The Lyme Disease Solution" by Kenneth B. Singleton M.D. (who is not my physician), he does speak about Low Dose Naltrexone.
I hadn't pulled out this book in awhile, but I remembered that this is how I knew about it prior to my physician recommending it.
Doctor, he does say what you were saying: that nearly every cell in the immune system has receptor sites for these endorphins, (obviously you know this but I am rephrasing for others) and that reseting the endorphin cycle reduces autoimmune inflammation.
For those that have the book, on page 169 he says that LDN "raises body endorphin production by as much as threefold."
And then he devotes p. 315-318 completely to discussing LDN. He says the therapy works best when Vit. D deficiency has been corrected and adrenal issues have been corrected (I am not sure if this is an opinion/observation or what), but I have not looked into either and I had a response, though my response was not quite as miraculous as the case study he mentions.
I'm sure LDN has helped some and not helped others, so perhaps that is why it hasn't caught on.
Prof Demetriou discovered that N acetylglucosamine resets the immune system to eliminate autoimmunity:
NAG happens to be one of borrelia's preferred foods. Still, I started taking 1.5 g/d of NAG on the premise that, while I am on antibiotics, the Borrelia won't profit from it. (It is too early to tell if this will work for my residual "pins and needles.")
I just wanted to ad that LDN is not being used as indicated. It's being used at a much lower dose to boast endorphins. It is to be taken between 9pm and 3am. Thats when your body is known to produce endorphins. The LDN blocks this mechanism to trick the body into thinking you don't have enough endorphins and then produces more. It's being used for many autoimmune diseases (if you believe they exist) and like an earlier blogger posted it is being used for Lyme along with antibiotics. It's an aid to help keep the body in it's best shape for the fight, and fight it is. Anyone interested should read up on LDN because there is some specific compounding ingredients to use.
I know this is an old post, but it's of particular interest to me because I have Crohn's and possibly Lyme. I tested positive for B Burgdorferi via plasmid PCR and IgM Blot (bands 23-25, 39, 41).
However, I don't really have CNS symptoms so I thought it might have been a false positive. I started doing some research into whether Lyme can cause IBD-like symptoms, and I found your blog.
Have you seen this (the connection between Lyme and IBD) in other patients? Are you aware of any resources which expand on this connection?
Cool Article Thanks a lot for this awesome post keep working and posting variety of articles.
In response to "One of my frustrations is that I lack an effective tool to combat autoimmune responses," I used to take the immunosuppressant Plaquenil for Sjogrens, which worked miracles on my joint pain, but I got MRSA because of it.
So I lived without it for about a year until I found Dr. Andrew Weil's (drweil.com) recommendation for Zyflamend (newchapter.com) as a supplement that supports a healthy immune response. Within a couple days, I noticed an improvement, and within six weeks I got just as much relief as I did with Plaquenil without the nasty side effects...
VP, In Need of Diagnosis (inod.org)
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