Here is a male patient in his mid 40s. He has been a regular patient in my Family Practice office since 2001. He was initially seen for depression, anxiety, panic disorder and obesity. In April 2002 he presented with a paralysis of the left diaphram. This was associated with a great deal of shortness of breath. He was seen by pulmonary specialists and neurologists who confirmed the diagnosis but were unable to offer a cause or treatment. At that time I was not a LLMD. At that time I elicited a history of tick bite with rash in 2000. I started him on Docycyline 100mg twice daily. I noted other symptoms of headache, fatigue and joint pains. The paralyzed diaphram was due to dysfunction of the phrenic nerve. I ordered standard Lyme serology which consisted of an ELISA with a reflex WB. The test was negative. I referred him to an ID specialist who felt he did not have Lyme disease. In May 2002, after a month of Doxy he noted that his anxiety was better but that his depression was worse. He continued to have shortness of breath and also complained of some numbness in his hands at night. After 30 days the Doxy was stopped and he was referred to a psychiatrist. He was on numerous psychotropic drugs for depression and anxiety. He also was seen by a rheumatologist. He was diagnosed with fibromyalgia which was treated with Neurontin. I saw the patient in October 2oo7. My note indicated Lyme disease?
Again, I was not Lyme literate and I followed the recommendations of the "experts" of whom he had seen many. Moving ahead, in early 2003 he saw an ILADS, LLMD rheumatologists based on self referral. This physician wrote a detailed note which suggested a chronic infectious cause of his ongoing issues. She found biliary dyskinesia and recommended cholecytectomy before beginning long term antibiotics. I was not Lyme literate but found the detailed consultation "interesting." Salmonella was found in his stool and this was reported to be a contributing factor. Because of fatigue I recommended a sleep study. He had no gallbladder symptoms so the organ was not removed. By November 2003 the sleep study confirmed severe sleep apnea and C-PAP was initiated, but not until May 2004. He was seen frequently in our office was a multitude of multisystem complaints. The primary issues continued to be severe depression and anxiety.
In 2005 he reported seeing worms in his stool. An ova and parasite stool exam was negative. He was treated empirically with Flagyl and then Abendazole with resolution of this complaint. The C-PAP significally improved his fatigue but not his shortness of breath. He continued treatment for depression and fibromyalgia without much relief. He was a "frequent flyer" in my office. In January 2006 he reported a brief episode of left facial drooping which occurred in FLA while visiting his father. He was evaluated for a possible TIA; the work up was negative. By February 2007 I was in the early stage of Lyme literacy. At that time I combined symptoms into a complex. He had a history of tick bite with ECM. He had joint pains and fibromyalgia. He had an episode of facial droop (Bell's palsy?) and he had multiple psychiatric symptoms including memory loss. Lab studies at that time showed: Negative Lyme WBs, a Lyme C6 peptide aby index of 0.31, folic acid of 4.8, B12 of 313, vit D OH 25 of less than 7 and a CD57 count of 66. Screening for co-infections by Quest was negative. He was started on Ceftin and Biaxin. In March 2007 Plaquenil was added. Within a month he reported some cognitive improvements. Antibiotics were continued for several additional months. In June 2007 his C6 index had increased to .73. I felt that this was evidence of "seroconversion" of Lyme. Various antibiotic combinations were continued. These included Flagyl, Rifampin, quinolones and others. He complained of increased joint pain and ongoing fatigue and depression which did not improve. In March 2008 he reported stopping antibiotics with a prompt increase in cognitive deficits as well as joint and muscle pain. Antibiotics were restarted but were no longer as effective. Dizziness, Brain fog, joint pain, mood swings and fatigue continued. He developed new symptoms including a loss of bladder control. He became very discouraged. Supportive therapy with Welchol and Wobenzym-N were not helpful. In July 2008 and Igenex serology for Lyme was obtained. His IgM bands were positive only at the 58 and 66 positions. His IgG bands showed 41+++, 31,39,93 Ind. Shortness of breath due to the paralyzed diaphragm remained a significant symptom. I tried Diamox to stimulate respiration. It was somewhat helpful. On September 4, 2008 I reviewed his long record and realized he had never been tried on empiric anti-Babesia therapy. Month after month I had seen this patient for chronic Lyme disease. He had bouts of improvement followed by set backs. He barely functioned and had considered full disability and even suicide at times. I said lets treat Babesia to see if this helps. He was started on Mepron, Biaxin and Artemesia. When I saw him on October 2, 2008 I was expecting the usual. Still feeling lousy.
Instead I was greeted with: " No doc, its good news this time." He had Herxed terribly for about 5 days. He had considered stopping therapy. But then something miraculous occur ed. He felt great. It was the best he had felt in years! His fatigue was better. He had new found energy. His shortness of breath was better. His brain fog was lifting. His anxiety and depression were better.
Neck pain, which I had not focused on, was better. It was dramatic. After 18 months of treatment (not always consistent) he was better and optimistic. Why had I been holding out and not prescribing this miraculous treatment? This is a question I have to ask myself. Did he respond to anti-Babesia therapy because the Lyme had been thoroughly trounced? Or did I let this one slip through. I am still learning. I won't make this mistake again.
There is a notion amongst ILADS docs that 58 and 66 bands suggest Babesia. I have become suspicious that low folate and B12 suggest chronic RBC infection. Babesia is the most likely culprit. Ehrlicia and Bartonella probably don't persist that long if standard Bb therapy is used.
He is not the only Lyme patient I have seen with a paralyzed diaphram.
I have to be on the lookout. It is not just new patients who have Lyme. It is also old patients who have been in the practice for years with "mystery" illnesses.
I am your patient and forgot to mention in my last appt. That since starting with the paquenil I am getting hiccups frequently. They don't last long at all but is very common now. Could this be related to my Babs with treatment of Mepron, paquenil and zithromax?
ReplyDeleteI hope its a good sign. hiccups come from irritation of the phrenic nerve: the one's that not working. Let's keep our fingers crossed.
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ReplyDeleteThis was what I was meaning with a regimine that got the common but hard to detect stuff. Hmm- that #1200 bottle of mepron looks better and better. Neck, diaphram.
ReplyDeleteRegarding the phrenic nerve, babesiosis, and sleep apnea. I am positive that I have sleep apnea since my spouse tells me that I stop breathing many times at night and she sometimes hits me to get me breathing again. She has timed this for very long periods. This might explain why I am so very tired all the time. You had mentioned in an earlier appointment that you have noticed a lot of your patients with sleep apnea. Is it possible based on your clinical findings that treatment with plaquenil, (I know I spelled this wrong earlier) could be a godsend for sleep apnea? I have been on the Mepron and Zithromax going on 4 months now but never noticed a hiccup until 2 days into the plaquenil, which by the way is helping the neck pain immensely. When I say hiccups I do not mean a string of hiccups, merely one or two spaced hours apart. Did your previous patient begin having hiccups? Can you ask him? I also started taking Zantac as opposed to Prevacid when prescribed the Plaquenil.
ReplyDeleteI am crossing my fingers and I hope this helps you isolate.
Thank you for everything, my family, my friends and my co-workers thank you for the changes you have made in me.
The sleep apnea may be due to dysfunction of the 9th cranial nerve, the glossopharygeal nerve. This disorder can be observed when the uvula is deviated to one side or when the soft palate does not rise when the person says "Ah"
ReplyDeleteDisease of this nerve is common in Lyme patients. In the past everyone had a uvula which was midline(in the middle of the pharynx-throat). A patient recently told me that an ENT specialist told here that it has now become "normal" for people to have a deviated uvula. ???
I have had Obstructive sleep apnea for several years this is a common sleep apnea caused by obstruction of the airway. It is characterized by pauses in breathing during sleep. These episodes, called apneas (literally, "without breath"), each last long enough that one or more breaths are missed, and occur repeatedly throughout sleep. In obstructive sleep apnea, breathing is interrupted by a physical block to airflow, despite the effort to breathe. Warning signs and symptoms of sleep apnea include: Frequent silences during sleep due to breaks in breathing (apnea), Choking or gasping during sleep to get air into the lungs, Loud snoring , Sudden awakenings to restart breathing or waking up in a sweat, Daytime sleepiness and feeling un-refreshed by a night’s sleep, including falling asleep at inappropriate times
ReplyDeleteI have heard that other Lyme folks have had central sleep apnea the brain's respiratory control centers are imbalanced causing one to stop breathing during sleep I understand this is less common.
I sent for an overnight sleep study in a sleep clinic by my primary care physician. This is required because a prescription is required for the equipment and the supplier needs to configure your equipment to your needs. I was proscribed a CPAP machine (Continuous Positive Airway Pressure). The CPAP machine stops this phenomenon by delivering a stream of compressed air via a hose to a nose mask splinting the airway (keeping it open under air pressure) so that unobstructed breathing becomes possible, reducing and/or preventing apneas. This has the additional benefit of reducing or eliminating the extremely loud snoring that sometimes accompanies sleep apnea. The new machines make very little sound and I became used to it in just a few nights. I required the Optional Humidifier adds moisture to the compressed air this is a heated water chamber that can increase patient comfort by eliminating the dryness of the compressed air. The temperature can usually be adjusted or turned off to act as a passive humidifier if desired. In general, a heated humidifier is either integrated into the unit or has a separate power source recommended. I can say this has improved my quality of life and would recommend that you get checked out.
http://www.helpguide.org/life/sleep_apnea.htm
http://en.wikipedia.org/wiki/Sleep_apnea
http://www.mdjunction.com/sleep-disorders
http://www.mdjunction.com/lyme-disease
Thank you for the beautiful summary. Sleep apnea puts stress on the heart, lungs, brain and other vital organs. It is associated with the elaboration of inflammatory cytokines and suppression of the immune system. All in all, it is not a good thing for Lyme patients. Your are absolutely correct. There are two forms of sleep apnea: Central and obstructive. The vast majority of patients have the obstructive type, called OSA for short. I recently saw a Lyme patient with Central sleep apnea. It is very rare. This occurs when the brain sends the wrong message to center which regulate respirations during sleep. If you have fatigue: Please get a sleep test(polysomnogram) with a C-pap titration study. C-pap is hard to adust to, but it is a must if you want to get better!
ReplyDeleteI read your post from May 6, 2008It says that band 66 on the Western Blot test suggests Babesia. This is true in my case. I tested positive for band 66, but negative for normal bebesia testing. Then my doctor tested me for WA-1 (babesia duncani) and I tested really high.
ReplyDeleteThanks for the information.