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Good evening everyone! One of new members, Dixie, is having some trouble getting ahold of the new site and figuring out how to post, so I'm posting it for her. Please respond to "Dixie," not little olive
quote: Hi All, > I have been talking to Mike and he thought I should post the question. > Has anyone had severe shortness of breath, or a paralyzed diaphragm or > phrenic nerve? > They said his diaphragm is not working at all and is atrophied and his > phrenic nerve is dead. > My hubby was tested positive for Lyme by IgeneX with 4 positive bands > and 1 indeterminate one, and we have been treating him with doxy & > amox. but he now has a cold so his doc prescribed Z pak, his breathing > was worse yesterday, so as Mike pointed out, maybe that is the herx??????? > He has been diagnosed with ALS, by doctors here and yes, by Mayo Clinic. > I just don't want to waste his time treating Lyme---IF there is NO hope. > Does anyone have any information for me?? > Thanks so much for everyone on this board. > Dixie
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Hum, well, if you don;t want to treat lyme, I suggest a least you start him on LDN, it seems to help ALS...
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
I'm thinking if Lyme disease can attack and damage the cranial nerves, and vagus nerve, cause peripheral neuropathy, AND a friend of mine has nerve damage in her leg from Lyme, why not the phrenic nerve? These bacteria aren't really picky.
Now, does that mean your friend doesn't have ALS? I have NO IDEA, but my opinion is that yes, Lyme disease can cause nerve damage anywhere in the body.
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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Dearest Dixie, ALS is late-stage chronic Lyme disease, for sure!
There IS treatment for Lyme disease. It's NOT a waste to treat LD & co-infections. It's tragic that your hubby has gotten so very ill from untreated tick-borne disease(s).
Hurry, hurry, hurry to THE BEST ILADS-trained LLMD you can find asap!
He may have babesosis, which is treatable, but can be fatal. Dozens of species of Babesia infect humans, but IGenX can only culture for two of the spp!
In Pamela Weintraub's excellent 2008 book, Cure Unknown: Inside the Lyme Epidemic, there's an account of a man with "ALS" brought off his death bed by treating Lyme for the heck of it.
Do a search here for ALS and Lou G's disease. Lou G had a house in Lyme, Connecticut! This summer, the NY Times acknowledged Lou G actually had Lyme disease...
In my limited understanding, it seems ALS is the diagnosis ducky docs give to patients whose LD has progressed furthest without any proper or timely LLMD treatment. Since his infections are so advanced, I think your hubby will require IV abx in order to heal.
I pray you'll get appropriate Lyme-Aware treatment immediately so your hubby can enjoy healthy years with you, caring Dixie.
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Treating lyme that looks like ALS can be tricky. Definitely do an archive search for more on this subject. Does he have muscle wasting?
Posts: 8430 | From Not available | Registered: Oct 2000
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I have atrophy and muscle wasting along with an ALS dx. I've been on iv ceftriaxone for 9 months now. My lyme symptoms have improved although my weakness is the same or slightly worse.
I try not to lose hope. I just started mepron and azithromycin. All you can do is try.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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It really is tricky. ALS leaves the mind intact while Lyme disease affects the brain and cognitive abilities terribly. So if their cognitive ability is starting to go, that would be a good sign that something other than ALS is going on.
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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quote:Originally posted by little_olive: Lyme disease affects the brain and cognitive abilities terribly.
That is NOT true of all people infected with Lyme Bb and co-infections. Every infection is unique, as is each individual.
little_olive, what do you think causes ALS?
ALS is caused by The Lyme Disease Complex (Borrelia & co-infections) or "Multiple Chronic Infections."
2young2die, I'm praying for you, too! Smile
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I sat by a recovered ALS patient/LLMD at a conference in 08. He did recover from his ALS by treating Lyme and I found that to be inspirational. When other doctors asked him about treating Lyme ALS patients he emphasized the importance of avoiding Herxing in ALS patients and the need to proceed with caution to avoid further motor neuron damage. My now retired LLMD also had some initial success treating Lyme in an ALS patient from the UK.
I don't have any real information, but researchers at the University of California San Fancisco have had recent success in preventing nerve death in a mouse model of ALS. They were published in the Sep 2010 issue of the Journal of Clinical Investigation for their work preserving motor neuron function and inhibiting paralysis by inhibiting activation of the mitochondrial apoptotic pathway. That's a significant finding, but I don't know how quickly their findings will impact treatment of human ALS patients.
I would have concerns about trying to treat Lyme without having a doctor who is experienced with both Lyme and ALS because any resulting damage from Herxing could lead to additional motor neuron loss and possibly advance the ALS. Given an option, I would probably try to treat Lyme or any underlying infection in hopes it made a difference, but I would try to minimize or avoid Herxing altogether as anything that might cause further damage would be dangerous.
On another note, I've heard of Intravenous Glutathione as useful in slowing down the disease process in some ALS patients, but most of that is anecdotal evidence and i'm not sure if there have been any studies. There are those who feel Glutathione IVs have really helped them, though. You might search ALS forums for those discussions as I doubt it would have a serious downside and anything that bought time while slowing additional damage could be beneficial, especially for those in the earlier stages of ALS.
Posts: 487 | From USA | Registered: Feb 2002
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Lonestartick provided info that all sounds accurate according to the scientific sources I've been reading. THX!
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My dad had ALS. I would give anything to have him back and have the chance to treat him for lyme&comp. Now looking back to all his first symptoms, it had to be lyme first and then triggered his immune system into ALS. Something has to trigger the body into an autoimmune status.
To me it's worth everything to find the best LLMD ALS literate dr. and fight for all your might in this.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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Dear hadlyme, We can feel the love in your writing. I trust your dad is with us all in spirit now and more joyful in his new role.
We're still here for a reason. Keep spreading the word about the realities of untreated LD.
A revolutionary stem cell procedure may be able to stop ALS, or Lou Gehrig�s disease, in its tracks.
HealthFirst reporter Leslie Toldo shares the story of one of the few people who have had it done. ALS is a deadly disease, with a quick and devastating decline. This could be the hope thousands of people have been waiting for.
Fifty-five-year-old Tom Elliott is not a quitter. He has ALS and fights to keep up with the daily routines of his life, even as the disease makes everything harder. �Brushing the teeth has become a real chore. Turning and rolling in bed to get comfortable has become an impossibility. This disease is about having to give up and sacrifice a lot.�
As ALS progresses, it destroys the nerve cells in the brain and spinal cord that control muscle movement until people �cease to be able to move, they become essentially locked in their bodies,� Dr. Nicholas Boulis said.
Boulis and his team at Emory University helped develop an experimental approach to treating ALS by implanting stem cells called human neuro-progenitors directly into the spinal cord. �We want to put those cells right next to those dying motor neurons in the hopes that those cells will provide protection and restoration of function, keep those cells alive, make �em stronger.�
It�s the first ever U.S. clinical trial of its kind. �I�m optimistic that we can do this safely. I�m optimistic that we�ll have opened the door to a world of opportunities,� Boulis said.
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If the stem cell transplant technique works for ALS, researchers say it could open the door for new therapies for spinal cord injuries, multiple sclerosis and other disabling illnesses. Human stem cells for this ALS study were developed by a Maryland-based biotech company.
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There are cases of Lyme-induced phrenic nerve paralysis in the Lyme literature. He will need IV antibiotics. Don't waste time: go for the big guns and use Ceftriaxone by IV, and get him a BiPap to help him breathe.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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When my wife begin having trouble breathing and swallowing her LLMD switched her to Rocephin(ceftriaxone). It work almost immediately. It was actually a turning point in our belief that she had lyme instead of ALS. We knew that no antibitoic would work for ALS, but would work on lyme.
Have your LLMD try Rocephin as it seems to work well in the chest area.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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