ALS/Lyme Help

[beverly10065]

I have looked around this forum for some time now but never posted. My husband was diagnosed 6/07. He has been confined to bed and wheelchair for over a year now. He can no longer speak or swallow. He has been on feeding tube since June 2009. He lost use of his arms/hands, he can move his legs but cannot stand. His neck muscles seem to be getting weaker also. He seldom holds his head up in the wheelchair. Extra saliva and nasal congestion are bad. Have several meds with no luck and had allergic reactions to a few. Muscle contractions and leg stiffness have been getting worse lately and making it difficult to transfer him by myself. He also was diagnosed with Lyme disease and is being treated for it also. He had improvement on IV Rocephin but when he was taken off it because of improvement he went downhill fast. Has anyone else been treated for Lyme disease mimicking ALS? I would appreciate any ones input. Thanks, Bev

 

[5912]

Your story is a lot like ours. My hb diagnosed 08 tested negative for Lyme here in Canada, but his onset of symptoms justified a clinical diagnosed of Lyme and antibiotics were started. At 1st it was oral, then 3 kinds of oral for 3 months. Then iv ceftriaxone (2mg) for 6 months. He still declined, from walking, to walker, to wheelchair. He showed no sign of improvement. The Lyme specialist stopped treatment. He said he has given all the antibiotics that he could legally administer and that he could not justify giving anymore. My hb still thinks Lyme. Hope I guess. He wants another Lyme test from igenex labs.
I believe Lyme can trigger ALS. But once it starts, it can't be stopped. If the virus/bacteria breaks through the blood brain barrier, they can't stop it. Yet.... Why has this theory not been proven or dispelled? Good thesis/Research paper for a young, think outside the box, medical student. Me thinks.

 

[hal9350]

My wife is still thinking along these lines. We saw an infectious disease specialist yesterday and he told us much the same thing. He believes infections may be able to start the ALS process, but then the infection goes away yet the ALS continues. Nevertheless he is having me tested for a bunch of infectious diseases just in case: rocky mounted spotted fever, colorado tick fever, many others. He did not offer hope that it would cure ALS but thought that if one of those infections were still present, treating it might slow progression. We'll see what comes of it.

 

[4842]

To me the rocephin (Cextraphine) I know I spelled that wrong. Will be helpful, after all it is lymes disease treatment. Maybe that will clear some of our questions. I agree with the thing that this darn crap is triggered and then manifests.

 

[5912]

I think Ceftriaxone has got to be ministered at the very onset of symptoms. Although I am not a Dr. However what do the Doctors know?
I just think possible triggers should be properly researched. To be ruled out. What if a tick so tiny, so abundant in the world could cause this horrific sickness. Would the cure be to be vaccinated? Like polio?
There have been a good number of football, soccer and Baseball players with ALS. Concussion? Or hanging out in the fields, where ticks hang out.
High reports of Veternarians, and Farmers getting ALS,,,hmmmm, formaldehyde? Or does it seem like a neat spot for ticks to hang out in?
as for firefighters, veterns.. Toxins could Also very much be a contributing factor. Possible to have more than one cause that triggers the Motor Neurons to decide to die.
My frustration lies with the fact that I am not the only one who has theories. I am not the only one with the Lyme theory either. How cone it has not been researched enough to put that theory to the test? How hard can it be? We can figure out how to play golf on the moon, but we can't test a simple, and very possible life saving theory?

Ok, that's all I got folks....*rides off into the sunset*

 

[1070]

We just got back from seeing our Lyme Doctor today. My husband tested positive for Lyme and Q fever two years ago. He also did IV rocefin for 6 months total. Unfortunately, my husband felt horrible on the medicine the whole time. He then did IM rocefin for a year. He is now on several different antibiotic protocals. Is it helping?>>>that is the question. Our Lyme Doctor does not believe that Lyme Disease causes ALS, but does believe that it quickens the progression. Today my husband had a full panel of blood tested for various fungis. We are stil hoping to find what may have triggered the ALS. K-Town...I feel your frustration. We do not understand why Doctors are not willing to think outside the box..that is why we continue with the Lyme Doctor.

 

[kelly11016]

Hi all--

I have been following many of this forums' threads for a couple of weeks. I believe that I am ready to contribute as I was diagnosed with Lyme's Disease exactly one year ago this week. I was diagnosed via Positive CDC criteria Western Blot. My imitial complaints were dizziness, extreme vertigo, clumsiness, forgetting familiar names, and extreme fatigue. I had to practically beg for the Lyme's titer and this was before I knew of the controversy surrounding Lyme's Disease. All I knew was that I had been bitten by a deer tick while at Army basic training back in 2005 and believed to have been reinfected in Spring of 2008 after I had a huge circular rash on my torso and soon after battle a really bad upper respiratory infection that sent me to the hospital with a fever of 104, after which I have never felt well.

So you may wonder what in heck I'm doing here on the ALS Forums...Well here it is a year later only a treatment of 10 days of doxy and in a world of panic. I gave in to my GP when he said a few days of doxy would be enough to cure me of Lyme's. It did stop the excessive twitching, jerking, and joint pain for a long time. I am a 28 year old female physicist in Alabama and I feel like beginning this fall everything started going downhill very quickly. I noticed during this past semester I began having trouble with my speech. I wasnt slurring or studdering really...mainly just couldnt remember words very quickly to put my sentences together. I also noticed a couple of times while reading my text books looking down I drooled. I also began these crazy OCD symptoms and rituals that I continue to suffer with. This semester I have lost my car a couple of times, parked on the sidewalk not realizing it, and barely able to remember what I had for breakfast and even forgetting my boss's and my date's name one time..(that was funny). Progressively I am unable to concentrate on physics problems and often I have to read a passage over and over again before I can comprehend it. My IQ is still intact at a 156 thank goodness.

Other symptoms I have had--

I have horrible acne and scalp acne since being treated with doxy.
I am allergic to all hair care products except Head and Shoulders and dial soap.
I am allergic to milk and nuts now.
I get these electric shocks in my neck without moving it at all..it feels like someone slaps me.
I still get the muscle jerks.
I get these creepy crawley sensations all over my body kinda like ants crawling
I feel these vibrations in my legs and painful jabs in my body
I get chest pains where it feels like andre the giant is hugging me'
My heart also slows down and I have to cough to get it to start back up

Crazy I know. I had an ID refer me to a neuro for suspected MS and this is where it all brings me here.

I went to the neuro and had a normal exam ordered MRIs of Lumbar and brain all clean. All my bloodwork clean. The next day I started getting fasciculations all over my body. I felt under attack. I had a few of these in my buttocks over the fall but never really was bothered by them because it only happened a couple of times. I went back to the neuro the next week after an onset of numb toes that just wouldnt subside to normal. I mentioned ALS and he said def not but ordered the cpk and enzyme workups which were normal. Now here I am just a week later obsessively worrying that my lyme's has triggered bulbar onset of ALS. I had a normal emg two days ago but still afraid it is too early. I am having no difficulty swallowing unless I am anxious or thinking about it. My speech is still not slurring and my tongue is not fasciculating even though my neck is. My right leg is percieved to be weak and feels heavy. I am also having electric shocks when I pick up heavy objects with my arms.

My doctor ordered another Lyme's titer and my neuro wants an LP this monday to check for neuro lyme. Does anyone know what are the odds that these tests will still show positive for lymes? I am def convinced lymes causes some ALS but also agree that after the onset of ALS via Lymes it is very difficult to start. My doctor says its just a waiting game now until my WB comes back. If it is positive I start another round of antibiotics. All I know is my doctor is very regretful of not treating me via IV rocephrin now that I am presenting with ALS symptoms. I do know of a couple of women here in Alabama that had Bulbar onset ALS and caught it really early and were treated for lyme's and got better and were alleviated of their ALS diagnosis..so I just pray it is not too late for me.

I would love to hear any of your thoughts and appreciate all of your prayers.

Love,
kelly

 

[7859]

I thought for sure I had Lymes when I started having symptoms. I had Lyme symptoms for years, and in the summer of 07, I got bit by 2 ticks, and the bite sites for both of them swelled up, and turned red. I'm not sure if there was a ring. Shortly after I had a really high fever that only lasted about 24 hours. Anyway, about 2 weeks later my speech started slurring. My doc did a lyme treatment, but only the 10 day oxy. Long story short. I end up seeing a neuro. He said lyme or no lyme, you still have ALS.

 

[kelly11016]

Phil,

Thats the sticky situation I am in and unfortunately a man I know the same as me except he was not proactive and is in a mess now. He was diagnosed with Lyme's and forwent treatment because his physician told him that there is no Lyme in Alabama. He gets worse and worse and finally goes to neurologist and was diagnosed with ALS. He accepted diagnosis and continued to progress and then went to an ALS Clinic who said no ALS and retested positive for Lymes but now is bedridden and doctors say he is too far gone and is not responding to treatment. But he doesnt have ALS he is actually dying of Late Lyme's Disease.

I just thank God for my two clean EMGs and take my supplements and treat my Lyme's. I havent seen any marked improvements on Rocephin but I am on an extremely low dose (1gram) but it has stopped progression of symptoms. Holy crap, 2 weeks ago I predicted myself to be in a wheelchair by the acute onset and extremely fast progression of my symptoms.

I am considering Holistic therapy to treat ALS to be proactive..any suggestions or thoughts

 

[joanne10818]

Dr Martz experience with ALS diagnosis that turned out to be Lyme Disease led him to open a clinic treating ALS/Lyme. I believe he is now retired but he presented at ILADS conference last year and his presentation can be seen on DVD available from ILADS - International Lyme And Associated Diseases Society

To read some of Dr Martz story see
Doctor with ALS Treated for Lyme Disease Joins ILADS - Dr. Dave Martz
Dr Martz will be travelling to UK this year to present at ILADS conference in London not bad for someone given 2 years to live in 2003

With Lyme Disease we need to get well informed so that we can best find our way through the maze of this illness whilst those treating us tend to really on iDSA discredited guidelines and don't find time to read the considerable research that supports ILADS guidelines.

 

[kelly11016]

Hi Joanne,

I appreciate your enthusiasm about lyme disease. I also see that you have only posted on the Lyme's Disease Threads on this ALS Forum. I'm not trying to be a butt but I know all the people on here with crazy symptoms and all the PALS on here have heard of Dr. Martz and his miraculous recovery, and are all well informed on the possible Lyme/ALS connection. Having said that, I am also becoming extremely agitated at Lyme's Patients that only had some pain here and some floaters there constantly reminding me that Lymes mimicks ALS while I sit here barely able to use my legs, fasciculations all over the place, and barely able to get a sentence out edgewise..maybe I'm just being a poop head but I'm only 28 years old and I just don't want to keep having Dr. Martz shoved in my face. I just want to come one here and check on my fellow udiagnosis and the PALS. I'm being treated for Lyme's but you Lyme's enthusiast need to keep your informative posts to a minimum so that those of us in serious limbo with some serious symptoms can communicate without links to Dr. Martz.

I don't know what has gotten into me today...sorry if I sound like a butt..I'm just sick..and ill..and frustrated...but at least I got to shoot my AR 15 today.

Hope everyone is well today.

 

[kim6432]

Kelly,

I'm sorry to hear you are not doing so well. It sucks being sick (especially with no end to it in sight)!

 

[kelly11016]

Thank Zaphoon,

I'm sorry if I sounded like a butt last night. I had a terrible day with symptoms yesterday and I took it out the wrong way. I bit my tongue all day yesterday and sounded like a blithering idiot trying to get the right words out and it got me upset plus my jello leg was trying to be a butt however, I chose to stick it to the man and jumped up and down on it for quite awhile as if to say "Take that stupid leg"... I had my first appt with my LLMD on Friday and he promises he can heal me in one month. I was skeptical but like I told another PAL today..I went to LabCorp and the nurses were all bragging on my doctor because this 25 yr female nurse diagnosed with ALS from UAB came to him in a wheelchair and now she is walking and went back to work..The nurses said it was a miracle they first drew her labs in a wheelchair and her mom holding her head up and then two months later she walked in able to talk..so made me feel like I'm in good hands.

He checked all my muscles and concluded I had no clinical weakness he also checked my cranial nerves. My neuro has never done any of this. My reflexes were fine which is awesome because usually mine are kick you in the face brisk. I was glad that my normal reflexes were noted in my chart for my neurologist. So he noted no more UMN involvment at all and no evidence of weakness so that was a charted improvement from my neuro two weeks ago. He said I was on too low of dose of Rocephin and he pulled my picc line yesterday and I start orals on Monday.

I just wanted to let everyone know I am now seeing improvements now however small, still improvements. I have lost a ton of weight so if anyone has any suggestions let me know..my doc says its from the Rocephin.

Here are my improvements so everyone reading or following my story can know that I am getting better...

-No more hyperreflexia, no babinski
-down to one or two muscle spasms a day..some days none
-very very few fasciculations, I had 8 yesterday (so few I can count)
-no more vibrations/buzzing
-only right hand going to sleep at night but only every two nights or so
-no weak feelings in my legs
-my tongue has gained some mass, seems more normal now
-no jerks or clonus anymore

New things or non-improvement

-still have jello leg feeling sometimes..only happens after exercise now and leaves with rest
-biting my tongue and bad speech..seems worse..doctor says its anxiety from the Rocephin reaction
-lost a significant amount of weight holy crap
-extreme chest pains that double me over and I cant breathe
-migrating pain in all limbs
-blurry vision in left eye

so there ya go..I feel like the most noteable improvement is the disappearance of the fasciculations and hyperflexia..Zyphoon in your experience with PLS does your reflexes go from normal to brisk and change?

I wish I knew how buddy was doing been worried about him..my doctor says it can get pretty bad on the antiobiotics for people with bad infections..he said my doctor putting me on Rocephin prob saved me from a wheelchair due to my quick progression...so I wish I knew buddy was ok.

I'm going back to Auburn tomorrow and going back to my cheerleaders..whatever this mess is..its not going to keep me from the joys of my life any longer.

Love you guys and sorry for the butt head post. Been on edge lately but thats no excuse.

Kelly

 

[kim6432]

Kelly,

My reflexes during my previous neuro visits were charted at 3's and 4's. According to what I've read, a 4 rating usually includes clonus (but I've never been told I had it).

Leg cramping and fascics are non-stop and have been so for well over a year.

My next appt is mid April and I plan on asking what the odds are that this may really be a case of PNH (Peripheral Nerve Hyperexcitability), another term for BFCS (Benign Fasciculation Cramp Syndrome).

 

[kelly11016]

Ive read your posts about your symptoms..Do you take magnesium..my doctor told me to take as much as I could without getting diarrhea..right now I can only handle 500mg at bedtime but within a week on the Mag..my spasms cut in half seriously and my fasciculations are almost gone..my LLMD said that with PNH that you sometimes get from a virus or infections magnesium will help restore the levels lost with the infection in that improving hyperflexia, twitching, cramps, and spasms. Just wondering if you are on them and seeing improvements..He said if my spasms and things were due to Lou then they would not be improving on magnesium..not sure what to make of it.