ALS or Lyme??? Looking for LLMD in Iowa...

Hello! If anyone can recommend a LLMD in or around Iowa or surrounding areas, please provide ASAP! Inquiring in a quest for answers for my dad. Below is a brief history of his symptoms; I would appreciate any thoughts or insight on what alt options we should look into.  location:   Central IA surrounded by timber & hay ground.  Has travelled to MN, WI, & MI in recent years. Dad = 62yr old & prior to Nov. 13' a relatively heathly individual. Aches & pains he has had, have been attributed to previous rigors of years of sports & physical labor & general aging.       Symptoms:   As far as I know, does not recall tick bite &/or rash... Chronic joint pain leading to knee replacement (both), thumb joint replacement, tendon surgery on hand, carpal tunnel surgery on both hands, total shoulder joint replacement (TSR) in Nov. 13 & is his most recent surgery. I also now refer to his TSR surgery as 'D day'... :(  The TSR in Nov. is when the onslaught of progressive & rapid symptoms surfaced - He immediately complained of slurred speech following surgery & was told it would subside, discharged home. Slurring never improved - began seeing speech therapist. Breathing difficulty started soon after being discharged - very winded & difficulty breathing when bent over at the waist or lying on his back. Often feels like he can't take a deep breath &/or air starved.   Dry unproductive cough; will become almost intolerable for him over a course of a 2-3 weeks & then will seemingly get some reprieve for 2-3 weeks? Twitching/tremors on his tongue when extended (stuck out) & Neurologists have noted muscle twitches in his arms both above & below elbow & in calf muscle. Notices he will bite the inside of his cheek/tongue sometimes when chewing (more often than 'normal'). Extremely TIRED. The man is a workhorse so some of this we figured was just him working 16+ hours a day. The fatigue has gotten much worse since the Nov. surgery. He is still working his day jobs but is understandibly spent every evening. No longer assists with farm/chores/hay etc.  Lost approx. 20lbs since this all began in later 13'; says food doesn't taste the same & not much desire to eat... He can eat & drink normally, although his swallowing is audibly louder sometimes (no clue what this is??).      He has undergone a battery of tests :  Various blood MRI CT scan Swallow & breathing studies by pulmonary. All tests came back negative or normal with the exception of his breathing tests which showed inconsistent/mixed patterns (?). Mar-April 14': Met with neurologists in Des Moines; during his initial meeting he was advised they thought he had ALS. EMG testing a week later - 3rd Neuro said his EMG results did not indicate or support ALS. (Great but back to square one)....  Requested a referral to Mayo in MN & had his initial consult with him July 7.   7/7: We met with 2 pulomonary doctors who ordered up several tests (some duplication of what DSM did); we go back up on 7/18 for a consult with Mayo Neurology & I suspect more tests... As of now - no diagnosis although in one of the the reports, the pulmonary Dr noted that he also has suspcions about it being ALS but that the onset & severity of symptoms post TSR is not explained by ALS... Possible phrenic nerve injury during TSR but that speech & swallow issues are not associated with phrenic nerve function.   I know ALS & Lyme are often mis/counter-diagnosed & wondering if anyone has 1) any symptoms similar to the above from Lyme 2) had a traumatic event (i.e. TSR in dads case) 'trigger' progression of Lyme symptoms?  He has had joint pain, neck stiffness, muscle cramping & some muscle twitching, well in advance of the TSR. The TSR seems to be the trigger event for whatever this is now...   I should also mention the initial blood tests ran included a Lyme test - though I don't know what kind or test specifics. It came back negative.     Post Edited (ccranch) : 7/15/2014 3:27:27 PM (GMT-6)

FIRST: ***THIS JUST IN***

"There can be no ALS without Bartonella!" -Dr. Dietrich Kilnghardt, June 14, 2014.

I include this because there is a history of people getting better with Rocephin etc. for Lyme/ALS, only to fall off (like me). So I would really love to see if Doctors try a BARTONELLA focused approach toward ALS/Lyme and hear what happens.


My story:

I have this ALS/LYME diagnosis. "IND" for Lyme and Babesia Duncani.

Was put on MEPRON/ZITH (1/30/14), immediately got worse. New doc added Rocephin 3 weeks in, was taking all three - helped in the beginning but then I fell off a cliff.

Throughout the treatment, my legs have gotten steadily worse (as have muscle twitches) over the long haul, which was always concerning because I want to believe it's LYME as some things were improving but treatment shouldn't cripple you, right?

To summarize:
In the beginning I immediately felt like it was making me worse then slowly I would have better days here and there - dexterity, balance, brain fog all improved. about 7 weeks in (4/14) I woke up speaking perfectly, amazing balance, energy, focus, dexterity, walking improved, strength - lasted for 2 days. Feels like a dream today...

Still, I kept on it, didn't want to quit and then May 18th, it happened again! I was speaking great. Then, FURTHER down I went. A few decent days in June, worse than ever now.

Now I am in limbo. I've read you have to give it 7 months but I am barely walking and talking now, and fear it could do more harm than help.

AND I'm really scared now because I have gotten so much worse SO fast. On April 22nd I was jumping in place, knees to chest. I went to Florida that day for a two week vacay, was walking on the beach everyday and for the first time, my ankle clonus was gone - the whole trip. I was walking down the stairs no problem. NOW? A flight of stairs makes me quiver. And going for a walk is out - my balance is awful and I have fallen several times. I barely leave the house for anything but a doctor appointment.

So I don't know what to do.

There are studies that say rocephin is a neuroprotective agent and may help anyway but I'm more concerned it is making me worse. I stopped for 10 days and I crumbled. Now I am back on it because I am just flat out scared. Hands are so stiff, only back on for three days now so we'll see.

I may even go back on the full protocol - Mepron/Zith/Rocephin, because thats when I was at my best. But again afraid to pump in a boat load of antibiotics, AGAIN.

I've seen both Presidents of ILADS and Dr. J in DC, he was the first of the three to look at my MRI and say he was concerned. The other 2 completely dismissed my ALS diagnosis. Dr. J has a COMPLETELY different program with completely different meds for ALS/LYME, but other than the guy on his website I have only found people getting worse. He uses a combo of clindamycin and others. Can't find a single thread of ALS/Lyme patients getting anything other than rocephin.


The OVERALL concern for everyone facing this scenario, do you take yourself down this road and miss out on possible clinical trial?


*IMPORTANT SIDE NOTE: There is a new theory in 2014 by the famous Dr. Klinghardt that the Lyme/ALS link is NOT Lyme but BARTONELLA. "Without bartonella, there is no ALS." So... being I was on Zithromax (which treats BART, but not the best) I wonder if that's why I saw improvement on the Mepron/ZITH/Rocephin combo.

Post Edited (jcp674) : 7/20/2014 9:51:26 PM (GMT-6)