posted
Since my last post, which was initally about my mother recently diagnosed with Lyme, this is what has happened.
My mother is now set up to see Dr. J of SC (formerly of North Carolina) at his new office on Saturday.
Also, based on all of your helpful information and PMs we got my brother who has been officially diagnosed with ALS to Dr. H in New Hampshire.
He just got his Igenex results back today. He is Igenex positive (IGG)with 31+, 39+, 41+, 58+, 66+.
He has an appointment Thursday to discuss treatment. He is currently in a wheel chair due to ALS progression.
I have read what the bands represent, but if anyone has any comments I would love to hear what you think.
Thank you for taking the time to help get us in the right direction. If it weren't for the helpfulness of the people here, my brother with ALS would have believed the infectious disease doc. who told him point blank that he didn't have Lyme. Also, my mother would be facing years of problems due to incorrect doses and durations of doxy.
Any responses to the Igenex results or ALS / Lyme connection? Thanks.
-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hello,
I am so sorry to hear that your Mom and Brother are both sick, but very glad that they are finding some help.
Bands 31 and 39 are specific for lyme, that says a lot.
Please keep us posted on how they both are doing. I hope your brother gets out of that wheelchair soon.
You sound like a very loving and caring daughter and sister, they are both lucky to have you.
Hang in there..
Posts: 6638 | From Michigan | Registered: Jun 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Those are very impressive lyme-specific bands. I would hope his LLMD would have him on an IV lickety-split!! I know there's a lot of good ALS threads on here that hopefully a search can turn up. Sarah (California Lyme) also has a ton of knowledge on the subject as she used to head a group of ALS/lyme people.
Good luck to him. Keep us posted!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Thank you for your responses. I will continue to search and read the ALS/Lyme info. here.
I will keep you posted. I am hoping he gets IV treatment set up when he goes Thursday.
You are all very nice people. I'm so sorry you have to deal with this terrible disease. I am grateful that you are so willing to help.
Thanks again!
-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
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posted
Californialyme is the one to talk to when it comes to ALS lyme. Send her an E-mail. Good luck
Posts: 17 | From Michigan | Registered: Nov 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Just saw your note here and wanted to let you know that I'm thinking of you. Just answered your PM's and sending healthy vibes for your family.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I for another believe there is MORE connection than they know today,,,about lyme and ALS!!!
Read where 50 ALS patients ALL tested positive for lyme,,,when only about half of known lymies test positive for lyme!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
What Don says, there is definately a link, all you have to do is search and read.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Hey NHGirl,
Good to see you again- and glad you have an appointment for your mother with Doc J.
39 kda is Lyme specific so your brother DID or DOES have Lyme, period. That is wonderful news. That means he has a fighting chance.
All he needs is one Lyme specific band for us to know that he has had or does have Lyme. Which means that the chances that what he has was triggered by a TBD, whether it is Lyme or a virus or a symptom cascade, is high compared to someone negative. I say triggered because in ALS tihngs begin to go on which are a cascade process like dominoes- and even if the first domino was Lyme the processes within the body can still proceed onward if that Domino is put up again-
Something I am going to add soon is an abstract which suggests the use of acamprosate for ALS- this is a drug usually used for alcoholism- but in ALS including Lyme/TBE induced ALS it could possibly possibly work as a furin inhibitor which could potentially stop progression of symptoms/ disease. I will post it here. It is not expensive and it could (or could not) really help. I would ask his doc for a trial run. Theoretically it should work but it has not been tried on humans FOR ALS- it has however been used for alcoholism and has a great safety profile. So it's worth a try!!! It is safe & cheap-
Furin is key to the symptom cascade. So you would be stopping the dominoes farther down, not just the first one, if acamprosate works. From what I have read, it might work. Worth a try. There ARE NO straight answers yet. Some people live, Most don't. I hope your brother does.
The ones that have do have htings in common. In general they are treated with IM or IV, not orals. Locally we have ahd 3 of 4 ALS/Lymies live and they had in common the same thing Doc Martz did who was a doc who treated himself for LS/Lyme. They all had lengthy Babesiosis treatment.
Babesiosis can make the body acidic. The body being acidic furthers the processes of ALS in regard to calcium flooding and dysregulation. Furin activates in acidity- so does the TBE viruses which have been associated with ALS symptoms in some studies. So treating for Babesiosis longterm could turn off those chemical activators in both of those potentials.
You or your brother (or anyone with Lyme or with a family member with Lyme) are welcome to call me any time during the day West Coast time at 1-831-662-2895 (before 7:00 at night if possible because that's when we do bedtime for kids onward from then).
Certain things work with ALS/Lyme- some things clearly don't and most are in the middle.
If I or my child had ALS Lyme I would want me or them on the following:
1. IM Bicillin or IV Rocephin for Lyme 2. Babesiosis meds for possible Babs coinfection 3. Ledum for possible TBE coinfection 4. acamprosate for cascade symptoms 5. alkaline diet because more than 1 thing pathogenic in this process is dependent on acidity- both furin itself is acid activated and so is the TBE virus which can cause ALS- and if the body is very acidic apart from Babesiosis you would want to do anything possible to modify that-
I have thought a lot about why we have had 3 of 4 LIVE around here-and what they had in common- with others who made it- I used to co-moderate The ALS/Lyme group when it was big, I watched a lot of people die who were great people. Your brother is not guaranteed to live, but he has a chance- which is more than he has with straight ALS.
Just watch out for orals, they can speed progression. SOME abx are NOT necessarily better than none. I would get your brother to a doc who knows ALS/Lyme- one of the better, unfortunately, more expensive ones- OR try and figure out what they would do and have it done for him by someone cheaper- Best wishes, Sincerely, Sarah Olson
1: Med Hypotheses. 2007;69(4):836-7. Epub 2007 Mar 21. Links
Consideration of acamprosate for treatment of amyotrophic lateral sclerosis.
Kast RE, Altschuler EL. Department of Psychiatry, University of Vermont, College of Medicine, 2 Church Street, Burlington, VT 05401, USA. [email protected]
Amyotrophic lateral sclerosis (ALS) is a fatal disease of degeneration of motor neurons. There is no known cure or life extending treatment. Much recent work has suggested that a possible cause of ALS is constitutive opening of the calcium pore in glutamate sensitive AMPA channels secondary to a failure of RNA editing that would change a crucial glutamate in the channel to arginine.
Here, we point out that the small molecule pharmaceutical acamprosate, usually used as a drug to maintain alcohol abstinence, may block this calcium pore--as do the related molecules endogenous polyamines such as putrescine, cadaverine, spermidine and spermine--and thus might have use in ALS.
PMID: 17368956
1: Med Hypotheses. 2007;69(4):836-7. Epub 2007 Mar 21. Links Consideration of acamprosate for treatment of amyotrophic lateral sclerosis.Kast RE, Altschuler EL. Department of Psychiatry, University of Vermont, College of Medicine, 2 Church Street, Burlington, VT 05401, USA. [email protected]
Amyotrophic lateral sclerosis (ALS) is a fatal disease of degeneration of motor neurons. There is no known cure or life extending treatment. Much recent work has suggested that a possible cause of ALS is constitutive opening of the calcium pore in glutamate sensitive AMPA channels secondary to a failure of RNA editing that would change a crucial glutamate in the channel to arginine. Here, we point out that the small molecule pharmaceutical acamprosate, usually used as a drug to maintain alcohol abstinence, may block this calcium pore--as do the related molecules endogenous polyamines such as putrescine, cadaverine, spermidine and spermine--and thus might have use in ALS.
PMID: 17368956
1: J Clin Microbiol. 1990 Jun;28(6):1329-37.
Reactivity of human Lyme borreliosis sera with a 39-kilodalton antigen specific to Borrelia burgdorferi.
Simpson WJ, Schrumpf ME, Schwan TG. Arthropod-borne Diseases Section, National Institute of Allergy and Infectious Diseases, Hamilton, Montana 59840.
Borrelia burgdorferi is the causative agent of Lyme borreliosis, a spirochetal illness with a variety of acute clinical manifestations that may lead to debilitating neurological and arthritic complications.
Diagnosis is difficult because symptoms mimic a variety of unrelated clinical conditions, spirochetes cannot always be isolated from infected patients, and current serological tests are frequently inconclusive because of the presence of cross-reacting non-B. burgdorferi antibodies.
To identify antigens specific to B. burgdorferi that could be used in the serodiagnosis of Lyme borreliosis, we screened a Borrelia DNA expression library in Escherichia coli for antigens reactive with human Lyme borreliosis sera.
One clone carried a 6.3-kilobase EcoRI chromosomal fragment (pSPR33), which encoded two species-specific antigens with molecular masses of 28 (P28) and 39 (P39) kilodaltons (kDa).
These two antigens were immunologically distinct from OspA, OspB, and the 41-kDa flagellin.
Ninety-four serum specimens from patients having Lyme borreliosis were tested for reactivity with P39. All of 33 the serum specimens with immunofluorescence assay titers of greater than or equal to 1:256, 13 of 17 serum specimens with titers of 1:128, and 14 of 44 serum specimens with titers of less than or equal to 1:64 reacted with P39.
Notably, many sera reactive to P39 did not appear to react with the 41-kDa flagellin.
Therefore, antibody to P39 could be mistaken for antibody to the 41-kDa flagellin in tests of human sera by Western blot (immunoblot).
Twenty-five control serum specimens, which included sera from syphilitic, relapsing fever, and amyotrophic lateral sclerosis patients as well as from 10 normal individuals, did not react to P39.
Our data suggest that P39 may be a useful antigen for the serological confirmation of Lyme borreliosis.
PMID: 2380361
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Sarah, THANK YOU for the gold mine if information! I think I will be up for a while trying to process this information. I have never heard of TBE, so I am going to try and look for some more information on that. I also have some very specific questions pertaining to doctors. I think it would be better if I sent you a PM.
-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
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bettyg
Unregistered
posted
nh, glad you got dr. appts. set up, etc. glad i could help you.
yes, our sarah/calif.lyme is a GOLD MINE of info! print off the stuff she posts/sends you to reread over and over.
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Theres als info on newbies page and in i believe cherals pages on lymeinfo
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
Wow Sarah, that's the girl I remember from my first time on lymenet, what, 7 years ago? You are a powerhouse! Amazing comfort, all that information for that poster whose brother has ALS/lyme. You go girl!
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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posted
Thank you all so much! I will post an update after I find out about what happens at my brother's appointment tomorrow.
I e-mailed him all of the info from Sarah. I will also post after my mom's appointment with Dr. J on Saturday.
I am like a crazy person reading all of this information. It is fascinating and sad, too.
Thank you for your prayers. I am praying for all of you for health and strength.
-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
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posted
My brother also has Hereditary Hemochromatosis for which he had 1 year phleb. treatments to get ferritin back to normal. Does anyone know if that could affect the course of his disease or chance of recovery? I think it did affect his liver a little.
-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
There is some conflict in pubmed about this= there are only a few papers relevant.
A few papers say people with that have a higher than statistical likelihood to get ALS so there is some kind of predisposition there- and there is speculation as to it being cellularly dysfunctional in the way that helps ALS develop- basically- but there is nothing really concrete. Which is kind of nice actually. Because there's no stop sign there either!!!*)!!!
And it DOES make people acidic- so right there it does help make people predisposed/ open for ALS in that way-
And ONE paper says there is NOT a higher incidence at all and that it is completely irrelevant!!! Just PMed you*)! Best wishes, Sarah
1: J Neurol Sci. 2004 Dec 15;227(1):27-33. Links
Increased incidence of the Hfe mutation in amyotrophic lateral sclerosis and related cellular consequences.
Wang XS, Lee S, Simmons Z, Boyer P, Scott K, Liu W, Connor J. Department of Neurosurgery, Penn State College of Medicine, Hershey, PA 17033, USA.
The etiology of amyotrophic lateral sclerosis (ALS) is unknown. The presence of mutations in the superoxide dismutase gene (SOD1) has led to theories regarding a role for oxidative stress in the pathogenesis of this disease.
A primary cause of oxidative stress is perturbations in cellular iron homeostasis.
Cellular iron mismanagement and oxidative stress are associated with a number of neurodegenerative diseases.
One mechanism by which cells fail to properly regulate their iron status is through a mutation in the Hfe gene. Mutations in the Hfe gene are associated with the iron overload disease, hemochromatosis.
In the current study, 31% of patients with sporadic ALS carried a mutation in the Hfe gene, compared to only 14% of patients without identifiable neuromuscular disease, or with neuromuscular diseases other than ALS.
To determine the cellular consequences of carrying an Hfe mutation, a human neuronal cell line was transfected with genes carrying the Hfe mutation.
The presence of the Hfe mutation disrupted expression of tubulin and actin at the protein levels potentially consistent with the disruption of axonal transport seen in ALS and was also associated with a decrease in CuZnSOD1 expression.
These data provide compelling evidence for a role for the Hfe mutation in etiopathogenesis of ALS and warrant further investigation.
PMID: 15546588
1: Neurology. 2004 May 11;62(9):1611-2. Links
HFE mutations are not strongly associated with sporadic ALS.
Yen AA, Simpson EP, Henkel JS, Beers DR, Appel SH. Department of Neurology, Baylor College of Medicine, Houston, TX, USA.
The presence of oxidative damage and increased iron deposition in CNS tissues of ALS patients prompted the authors to examine the prevalence of two common HFE gene mutations linked to iron accumulation and consequent oxidative stress.
The prevalence of the C282Y and H63D mutations was nearly identical in 51 ALS patients and 47 normal control subjects.
The presence of either mutation did not significantly affect the age at onset or rate of progression in ALS.
PMID: 15136693
1: Arch Neurol. 2007 Jan;64(1):63-7. Links
The association between H63D mutations in HFE and amyotrophic lateral sclerosis in a Dutch population.
Sutedja NA, Sinke RJ, Van Vught PW, Van der Linden MW, Wokke JH, Van Duijn CM, Njajou OT, Van der Schouw YT, Veldink JH, Van den Berg LH. Department of Neurology, University Medical Center Utrecht, Utrecht, The Netherlands.
BACKGROUND: Mutations in HFE, a gene defect that can disrupt iron metabolism, have been implicated in increasing the risk of developing amyotrophic lateral sclerosis (ALS).
OBJECTIVE: To further establish the association between ALS and HFE mutations by investigating whether HFE mutations are associated with an increased risk of developing ALS in a population in The Netherlands and by pooling our results with those from previous studies.
DESIGN: Retrospective study.
SETTING: Tertiary referral center for neuromuscular disorders.
PARTICIPANTS: Genotyping for 2 common HFE mutations was performed in 289 patients with ALS and 5886 population-based controls in The Netherlands between January 1, 2000, and December 31, 2004.
MAIN OUTCOME MEASURES: Development of ALS and clinical phenotype were compared among the different HFE genotypes, adjusting for known prognostic factors such as age at onset and sex.
RESULTS: Homozygosity for H63D was associated with an increased risk of developing ALS (odds ratio.
After pooling our results with those from previous studies, a positive association between H63D homozygotes, heterozygotes, and mutation carriers was found.
Within the patient group, heterozygosity for the H63D mutation was associated with a higher age at onset.
CONCLUSIONS: These findings suggest that H63D mutations in HFE play a role in the pathogenesis of ALS in various populations. This association might involve a later-onset subset of ALS.
PMID: 17210810
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Brother went to appointment with Dr. H. He called Dr. D. He will have to check with PCP first to see if PCP will work with Dr. D's recommendations. If not Dr. D will start IV rocephin and oral tetracycline. Hopefully some time next week this will be set up. Igenex tests showed no coinfections - Igenex positive on western blot CDC negative because of band 31. Zithro and Mepron seem to be making the ALS symptoms worse. Will update again.
-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
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posted
Make sure to have bro's blood tested for hypocoagulation all along the way. He most likely will require long term IV and blood condition could change.
Forget the CDC stuff, you are on the right track with your LLMD.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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