My husband has been diagnosed with ALS and also tested positive for lyme through IGENEX. Was just wondering some of you who are also this bad how long did you have to take antibiotics and what kind did you take? Thank you for any help you can give us. My husband has had about 6 months of Rocephin with no improvement - has actually gotten worse. His muscels are wasting away. Help from anyone who can help us!! Thanks.
Posted by ktkdommer (Member # 29020) on :
will PM
Posted by LSG Scott (Member # 21624) on :
he needs IV ABX that go after Babesiosis.
the ALS presentation in Lyme patients is more thought to be the tick born disease co infection known as Babesiosis the iv rocephin will only go so far or not much in your husbands case he would probably do much better on both IV clindimycin and Flagyl the sooner the b
Posted by Mathias (Member # 5298) on :
Have him tested for mycoplasma, especially m. fermentans.
My presentation was very ALS like. I had muscle wasting in 2 limbs and in my rib cage.
Blood test revealed mycoplasma antibiodies and a spinal tap yielded a positive PCR for m. fermentans.
Took about 3 years of floroquinlones and mino/doxy/tetracycline therapy along with PT to get improvement, about 1 year to halt the disease progression.
Only then was I able to get back to wellness with lyme specific therapy (bicillin).
Rocephin has no effect on mycoplasma due to it's lack of a cell wall. I also failed on IV Rocephin.
Posted by ImTrish759 (Member # 22595) on :
Thank you all for your help. My husband and I just remembered that he felt like the Flagyl did help him the best when he took it by itself. Maybe we need to ask for IV clindimycin and it again. He has a picc so all we would need to do is ask for the prescriptions. I don't know what we would do without all you people that have been there. We would be lost! Our lyme doc doesn't seem to know what to do with my husband.
Posted by lou (Member # 81) on :
Um, I also have muscle wasting and no longer have babesia, so maybe consider that lyme can do this too. It is a neurological disease and dead neurons produce muscle wasting. Why this doesn't happen to everyone with lyme is the puzzle.
Look up Dave Martz story, doc with lyme and told he had ALS. He treated this type of patient until he retired, and learned that herxing speeded up muscle wasting in a number of these patients, so they could only do lower doses.
Posted by ImTrish759 (Member # 22595) on :
So I am assuming that a good ilads doc would know what doses he would need. Maybe that is why he has gotten worse on IV Rocephin instead of better?
Posted by lou (Member # 81) on :
Well, not all lyme docs treat the same way, mainly because there are so many unknowns, and different patient reactions.
It was obvious to me that I got worse faster with full doses of abx that caused herxheimer reactions. Not everyone reacts this way, but enough that Dr. Martz learned to start out slow and low until the patient reaction could be assessed.
If you think this might be your husband's situation (and it might be hard to tell), then maybe you could ask your lyme doc if he/she would get advice from Dr. Martz.
The thing is that no one has found any better way to treat those of us who can't take full doses, except to pulse low doses. This is probably not curative, but more of a holding action. At least, hopefully it holds the lyme down.
Posted by 2young2dieMom (Member # 25434) on :
I was dxd with ALS a year ago and have been on iv rocephin which helped alot. I developed a staph infection in the picc line and then c. difficile. I was very sick. I'm better now and just starting carefully back on abx.
I've heard from other ALS/lyme survivors that using doxycycline is a big no-no. Patients tend to die very quickly on it. It's just something I've heard from others, there isn't any documentation.
I'm still hoping I have lyme since I did well on abx. I get very weak without them and the atrophy is progressing.
I am a patient at Dr Martz's clinic in CO. They have success with about 20% of their patients but sadly most die.
Posted by lou (Member # 81) on :
Interested in your case Mathias. Fluroquinolones did permanent damage to my achilles tendons, so I would not be eager to start them again.
Maybe the answer is that there are different triggers for the neuron loss that leads to muscle wasting.
Posted by 2young2dieMom (Member # 25434) on :
Is that Levaquin? I was just on that for a bad cough. My llmed wanted to continue it but my shoulders hurt and I was afraid of the tendon side effect.
Posted by ImTrish759 (Member # 22595) on :
LSG Scott - What were the dosages on the clindimycin and flagyl and does the IV clindimycin come in a syringe for injecting into a picc line?
Posted by Caniggia (Member # 30479) on :
quote:Originally posted by 2young2dieMom:
I've heard from other ALS/lyme survivors that using doxycycline is a big no-no. Patients tend to die very quickly on it. It's just something I've heard from others, there isn't any documentation.
I can confirm that doxy speeds up progression since I took it for four months and swallowing got a lot worse.
Posted by Caniggia (Member # 30479) on :
Two cases of documented scientific recovery from ALS (gives us hope).
Acta Neurol Scand. 2007 Feb;115(2):129-31. Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy. Harvey WT, Martz D. SourceRocky Mountain Chronic Disease Specialists, L.L.C., North Circle Drive, Colorado Springs, CO 80909, USA. [email protected]
Abstract This report summarizes what we believe to be the first verifiable case of a significant and progressive motor neuron disease (MND) consistent with amyotrophic lateral sclerosis that resolved during treatment with i.v. ceftriaxone plus oral atovaquone and mefloquine. The rationale for use of these antibiotics was (i) positive testing for Borrelia burgdorferi and (ii) red blood cell ring forms consistent with Babesia species infection. The patient has continued to be free of MND signs and symptoms for 15 months, although some symptoms consistent with disseminated Borreliosis remain.
Comment in Acta Neurol Scand. 2008 Mar;117(3):217. PMID:17212618[PubMed - indexed for MEDLINE]
------------------------------------------------
Rinsho Shinkeigaku 2000 Nov;40(11):1090-5
A patient with motor neuron syndrome clinically similar to amyotrophic lateral sclerosis, presenting spontaneous recovery.
[Article in Japanese]
Miyoshi K, Ohyagi Y, Amano T, Inoue I, Miyoshi S, Tsuji S, Yamada T, Kira J.
Department of Neurology, Neurological Institute, Graduate School of Medical Sciences, Kyushu University.
We report a patient with motor neuron syndrome similar to amyotrophic lateral sclerosis (ALS) and with spontaneous recovery. At the age 40, the woman developed progressive muscular weakness, atrophy and fasciculation in extremities. She also noted a dyspnea, tongue atrophy and dysphagia. A neurological examination 6 months after onset revealed i) a tongue atrophy and fasciculation, ii) diffuse muscule weakness and atrophy in face, neck and extremities, and iii) marked hyperreflexia in the four limbs and bilateral Babinski reflex, but iv) neither sensory disturbance nor ophthalmoplegia.
Electromyogram (EMG) detected such denervation potentials as fibrillation potentials, fasciculation potentials, positive sharp waves and polyphasic or giant MUPs diffusely in the limb muscles. Peripheral nerve conduction study detected neither conduction block nor delay. Thus, she was diagnosed as suffering from ALS. However, since approximate 1 year after onset, her muscle weakness has gradually been getting better. Simultaneously, the dyspnea and dysphagia gradually improved. Two years after onset, an EMG examination detected chronic denervation potentials in the left musculus sternocleidomastoideus and a few on-going denervation potentials in the left musculus extensor carpi radialis, but no denervation potentials in other limb muscles. Fasciculation potentials were found in tongue muscles. Thus, the present case was thought to have a reversible motor neuron syndrome clinically quite similar to ALS. A mild increase in IgE (346 U/ml) and a low-titer IgM-class anti-GM1 antibody were found in her serum though its pathological significance was uncertain. Any immunological aberrance may account for the pathogenesis.
PMID: 11332188 [PubMed - in process]
Posted by lou (Member # 81) on :
Caniggia - you don't need to beat yourself up for not getting treated early. A lot of people don't, and you may have had trouble in your country too because the doctors often fail to diagnose and treat it.
I got lyme in 1996, didn't get treatment until 1999, found out I had babesiosis too in 2000. Think I am cured of babs. But the wasting did not show itself until about 2006. And I was being treated most of that time, barring a few months. So, treatment might not have worked for you anyway to stop the bulbar ALS. My guess is that when lyme invades the nerve cells, it starts killing them off, and the longer you have lyme, the more neurons get killed. What I don't understand is why it manifests itself as ALS in some of us, but not all of us. Why do some people manifest symptoms of MS instead, or some other disease? Sure wish there was more honest useful research.
One thing I heard was from a doctor who specializes in ALS. He said by the time the wasting begins visible, half of the neurons are dead already. So, when I say my wasting started about five years ago, apparently the neurons were dying long before that.
Posted by Caniggia (Member # 30479) on :
Hi, Lou. You know I think it has something to do with the trauma of the surgery. Before surgery I had the same symptoms as many here. Headache, Neckache, Chronic fatigue, and flu symptoms after workout. The operation kind of ruined me.
It is hard to look forward when it was an operation that normally I would have had to pay 4000euros for, but because of social security I got it for free even after passing into adulthood.
A lot of coincidences really. Beats my dad winning a lot of money on betting way back.
Posted by Sheryl777 (Member # 17804) on :
I know a woman whose son has ALS. Yesterday I had an appointment with my LLMD so I asked him about it. I had read that ALS is lyme but he said that some ALS is lyme but not all. He treats patients with ALS (as well as lyme) and he said that he has had luck with a protocol by Patricia Kane which is an IV phosphatidyl choline.
Posted by lou (Member # 81) on :
Dr. K? The Kane protocol is for lyme ALS or non-lyme ALS?
Posted by Sheryl777 (Member # 17804) on :
Not Dr. K. - Dr. N.N. My understanding is that the protocol is for non-lyme ALS.
Posted by Sheryl777 (Member # 17804) on :
I was just looking through my rife manual (I have a BCX Ultra) and noticed that there are frequencies for ALS. I have no idea how effective that approach might be but I can say without reservation that my machine helped me with lyme and co-infections.
Posted by 2young2dieMom (Member # 25434) on :
I just started rifampin and I feel so much stronger. I am already taking zith.
Posted by canefan17 (Member # 22149) on :
If ALS is related to nerve damage and motor neuron die off... why isn't bartonella getting more attention?
Posted by Catgirl (Member # 31149) on :
Burrascano recommends creatine (in his protocol, 16th edition) for lyme patients and says it has been shown to be of benefit in neuromuscular degenerative diseases such as ALS and can be very helpful in supporting low blood pressure, as in NMH. Says it may also benefit strength, stamina and heart function (he also warns to use it safely, you must have adequate fluid intake).