posted
Does anyone know Dr. Martin Atkinson-Barr's website address or how to get in touch with him? I realize we're not supposed to use doctor's names, but I'm hoping it is okay in this context. Everytime I go to the website address that I have, it just goes to a generic search page.
Also, anyone know of any new cystic form research?
Dr Martin Atkinson-Barr is not actually a medical doctor, he is a researcher who treated someone in his family for lyme with a protocol based on the one Barry Marshall used for h.pylori.
His website has disappeared and there isn't a contact number for him now but this thread contains his article
posted
Yep, I was aware he is not an MD and I have read that thread before. I was not aware, however, of the h. pylori link. I was curious if he had ever gotten that published. Some threads from another website a few years ago stated he was searching for those who have been clinically diagnosed with ALS and seronegative for Lyme's.
posted
Hi Mike, I don't know if this will help, but here's a link to research by Alan MacDonald on the life cycle of a spirochete with some interesting info on cystic forms.
treepatrol
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posted
Keep in mind he isnt a Medical Doctor but realy smart.
-------------------- 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.
posted
Hmmmm, I guess I'm up with everything...I've already read all you sent. Thanks. I was worried I had gotten behind and/or was missing something.
Something that has never really been clear though is since the Bowen test assesses the cyst form of Bb, how can a person progress if it is within the protective cyst?
It's an article that came out last week that discusses stem cell research. It states that stem cells can offer not so much a replacement of damaged cells right now, but it can offer a disease model for scientists to study. It also states that the study the Harvard and Columbia researchers did was, "implicate a toxic factor in the cellular environment surrounding the motor neurons, rather than something in the neurons themselves."
CaliforniaLyme
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posted
MAB had decided he was wrong about this helping ALS- he was the first big USA proponent of Tinidazole which has been used in Europe for a while- he bowed out of Lyme stuff prettymuch after a bunch of ALSers tried his protocol and died- he was a PhD doctor, so he was a doctor, but not an MD- an earnestm good man who yes, had a family member very ill get very well with his regime- and thought it would work for everyone- it didn't- in the old ALS Lyme group we found the same results as Russians docukmented re TBE/ALS/Lyme infection-= abx will speed up progression with many people (activates TBE virus into overdrive). Only a few abx don't do this, only a few are safe- varies person to person but Flagyl never saved an ALSer that I know of- just speeded them up- MAB was a goodhearted person and he was very very depressed about it not working- he no longer believed in connection/helpfulness last time I spoke to him and I think felt a lot of guilt he didn't need to feel because he was honestly trying to help people with all his heart!! Good man bad idea. Best wishes, Sarah
-------------------- 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
Well that kind of brings me down a bit. I was hope-filled to start the Flagyl or Tinidazole protocol along with the Azithromycin. CalLyme- you are exactly right...as soon as we started the Zith., she got worse...it's very difficult right now to understand her, and she hasn't eaten or drank anything in 4 months. I was hoping since her QRIBb test was at 1:128, the Flagyl or Tinidazole would help.
Mike
Posts: 252 | From Iowa | Registered: Mar 2006
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posted
The ALS connection with Flagyl/Tini has nothing to do with it's effectiveness against the cyst form. There is other research that proves it's effectiveness. One of them is from Brorson.
If you are dealing with someone that has ALS/MS and has tested positive for Lyme, you should probably try a different approach. These people need to go slower, otherwise you can compund their illness. You should take a look at this website:
posted
The ALS connection with Flagyl/Tini has nothing to do with it's effectiveness against the cyst form.
Not sure what you mean by that... this is the reason for me posting this inquiry.
Dr. Martin Atkinson-Barr had demonstrated the use of Flagyl and Tinidazole in those diagnosed with ALS. Those he found with ALS also had serological evidence of Bb. Given that, since Flagyl and Tinidazole are the only proven cyst-busters [demonstated by the Brorson's and MacDonald], and the QRIBb tests for the cyst form, I am making an assumption or following a hypothesis that those who are diagnosed with ALS and shows evidence of Bb, need the Flagyl/Tinidazole. We all know that ceftriaxone can cause Bb to convert to the cyst form, but I'm wondering why then are there those who have been diagnosed with ALS, but have been successful with ceftriaxone therapy?
Mike
Posts: 252 | From Iowa | Registered: Mar 2006
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CaliforniaLyme
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posted
No he did not demonstrate it- they died!!! Was a hypothesis- did NOT work!!!!
What did work- IV Rocephin or IM Bicillin and Babs tx-
-------------------- 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
I know nothing about ALS and antibiotic treatment. But I do know a lot about Chlamydia pneumoniae, a common co-infection with Lyme and a possible cause of a number of other chronic debilitating illnesses, including MS, CFS, heart disease and so on.
The notion that antibiotics (including Tini/Flagyl) promote viruses, or that antibiotics killed the ALS patients may be wrong interpretation of the data. Cpn, which infects immune cells along with other tissues, inhibits apoptosis (natural cell death) to maintain itt's parasitic host. When you kill it the host cell dies. If immune cells are significantly infected you can get a white cell and macrophage reduction and opportunistic viruses and other pathogens are not suppressed adequately. So it's not the antibiotics that promote the virus in this case, it's the affect of the antibiotics on killing the parasite and the resulting apoptosis of host cells.
Similarly, if Cpn was involved, or if neuro-borreallis was involved, too fast a treatment with antibiotics and especially tini/flagyl (which kill cryptic Cpn and cystic Bb) not only can massively kill organ cells like neurons, liver cells, immune cells etc. in a high bacterial load accumulation, but this kill effect also initiates endotoxin (LPS and HSP-60) release and cytokine (inflammation) cascade. In Cpn a condition called secondary porphyria is also created, having further neurological effects. So the results observed may be due to other explanations than "the antibiotics" directly.
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4: Mawle AC, Nisenbaum R, Dobbins JG, Gary HE Jr, Stewart JA, Reyes M, Steele L, Schmid DS, Reeves WC. Seroepidemiology of chronic fatigue syndrome: a case-control study. Clin Infect Dis. 1995 Dec;21(6):1386-9. PMID: 8749620 [PubMed - indexed for MEDLINE]
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1: Falkensammer B, Duftner C, Seiler R, Pavlic M, Walder G, Wilflingseder D, Stoiber H, Klein-Weigel P, Dierich M, Fraedrich G, Wurzner R, Schirmer M; Innsbruck Abdominal Aortic Aneurysm Trial-Group. Lack of microbial DNA in tissue specimens of patients with abdominal aortic aneurysms and positive Chlamydiales serology. Eur J Clin Microbiol Infect Dis. 2007 Feb;26(2):141-5. PMID: 17216421 [PubMed - in process]
2: Rawlins ML, Gerstner C, Hill HR, Litwin CM. Evaluation of a western blot method for the detection of Yersinia antibodies: evidence of serological cross-reactivity between Yersinia outer membrane proteins and Borrelia burgdorferi. Clin Diagn Lab Immunol. 2005 Nov;12(11):1269-74. PMID: 16275939 [PubMed - indexed for MEDLINE]
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4: Jaamaa S, Salonen M, Seppala I, Piiparinen H, Sarna S, Koskiniemi M. Varicella zoster and Borrelia burgdorferi are the main agents associated with facial paresis, especially in children. J Clin Virol. 2003 Jul;27(2):146-51. PMID: 12829036 [PubMed - indexed for MEDLINE]
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6: Huhtinen M, Laasila K, Granfors K, Puolakkainen M, Seppala I, Laasonen L, Repo H, Karma A, Leirisalo-Repo M. Infectious background of patients with a history of acute anterior uveitis. Ann Rheum Dis. 2002 Nov;61(11):1012-6. PMID: 12379526 [PubMed - indexed for MEDLINE]
7: Mackiewicz P, Mackiewicz D, Gierlik A, Kowalczuk M, Nowicka A, Dudkiewicz M, Dudek MR, Cebrat S. The differential killing of genes by inversions in prokaryotic genomes. J Mol Evol. 2001 Dec;53(6):615-21. PMID: 11677621 [PubMed - indexed for MEDLINE]
8: Stollberger C, Molzer G, Finsterer J. Seroprevalence of antibodies to microorganisms known to cause arterial and myocardial damage in patients with or without coronary stenosis. Clin Diagn Lab Immunol. 2001 Sep;8(5):997-1002. PMID: 11527817 [PubMed - indexed for MEDLINE]
9: Derfuss T, Gurkov R, Then Bergh F, Goebels N, Hartmann M, Barz C, Wilske B, Autenrieth I, Wick M, Hohlfeld R, Meinl E. Intrathecal antibody production against Chlamydia pneumoniae in multiple sclerosis is part of a polyspecific immune response. Brain. 2001 Jul;124(Pt 7):1325-35. PMID: 11408328 [PubMed - indexed for MEDLINE]
10: Molzer G, Finsterer J, Krugluger W, Stanek G, Stollberger C. Possible causes of symptoms in suspected coronary heart disease but normal angiograms. Clin Cardiol. 2001 Apr;24(4):307-12. PMID: 11303699 [PubMed - indexed for MEDLINE]
11: Schumacher HR Jr, Arayssi T, Crane M, Lee J, Gerard H, Hudson AP, Klippel J. Chlamydia trachomatis nucleic acids can be found in the synovium of some asymptomatic subjects. Arthritis Rheum. 1999 Jun;42(6):1281-4. PMID: 10366123 [PubMed - indexed for MEDLINE]
12: Kainulainen L, Nikoskelainen J, Vuorinen T, Tevola K, Liippo K, Ruuskanen O. Viruses and bacteria in bronchial samples from patients with primary hypogammaglobulinemia. Am J Respir Crit Care Med. 1999 Apr;159(4 Pt 1):1199-204. PMID: 10194166 [PubMed - indexed for MEDLINE]
13: Klein JO. History of macrolide use in pediatrics. Pediatr Infect Dis J. 1997 Apr;16(4):427-31. Review. PMID: 9109154 [PubMed - indexed for MEDLINE]
14: Friman G, Wesslen L, Fohlman J, Karjalainen J, Rolf C. The epidemiology of infectious myocarditis, lymphocytic myocarditis and dilated cardiomyopathy. Eur Heart J. 1995 Dec;16 Suppl O:36-41. Review. PMID: 8682098 [PubMed - indexed for MEDLINE]
-------------------- 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.
CaliforniaLyme
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posted
I got an email asking for clarification-
To clarify- we used to have a HUGE group of ALS/Lymies who were all excited about MABs tx- the people who stuck with that did not live- There were 3 non-ALS-diagnosed people who helped that group out-
me- Sue Massie- MAB-
MAB quit helping out when people began dying- he felt terrible about it- he had believed he had The Answer-
THEN I left later on, near the very end of that group, when all my favorite people died- and it broke my heart- I just could not take it anymore when so many died- I could not take so many dying at once-
Sue MAssie stayed with the last people who did not get well until The End, until they died, and was there for them- she has guts to do that- more guts than I had-
the people who lived were on IV Ropcehin, IM Bicillin and Babs tx-
Some did live- and that is what they were on.
I miss the ones who died. Mike Cunningham. Vincent Sota. Luther Conant. Kevin. Pat. More- more more- the greatest people- they really were-
Anyway- some lived, and I am glad they did- but so many that I thought were so wonderful died- it was very hard to talk with them every day and hang in there and watch them die, one after one after one- best wishes to all, Especially ALS/Lymies- It is luck- mystery- beyond beyond- whether or not ALS/Lymies will be responsive- Best wishes, Sarah
-------------------- 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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treepatrol
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The people that died what were they taking exactly?
Flagyl and ??? anything else???
-------------------- 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.
Isn't the penicillin family something to stay away from? Did these people get Bowen QRIBb tested? My niece hasn't seen any improvements since beginning on ceftriaxone in Feb. 2006. With the Brorson's research and with what you have said, the only logical conclusion would be small doses/pulses of either Flagyl or Tinidazole. I read last night that the cyst form is still biological active, which means it can still exert its affects or damage cells. We haven't tried any Babesia medicine yet, although we did try a couple weeks of artemisinin. The doctor who dropped her wanted had in his plans to start INH.
CaliforniaLyme
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posted
I think penicillin is great with ALS/Lyme- Kari Mayne recovered from a diagnosis of Familial ALS with IM Bicillin which is penicillin!!!!!!!!!!!!!!!!!! And penicillin worked beautifully for ALS presenting syphillis!!! There is that report of 5 cases turned completely around by it- so no-
Tree, all I know is that I know of only ONE person with ALS/Lyme who ever recovered on orals and he took only Mepron and Zithromax and then Doxy once normal- other than him every ALS/Lymie I know who has lived has done with with IV Rocephin or Im BIcllin a couple of them- Orals do not work for ALS Lyme that I know of with that one exception- and he was cuaght the day after ALS diagnosis!! Actually same day- he was my ex husbands ex business partner Mike and my ex had him get a Lyme doctor that DAY through me and he went on meds- abx- for Babs- within a week or the next day or soemthing- and he recovered- but like me has to stay on abx or declines- he is the ONLY ALS presnting person I have ever known who SURVIVED on ORALS. period. I pmed you back, tree, and I would rather not postr again on this thread because it is making me miss people very much/
Like Dennis whose wife left him when he was diagnosed ALS and who was all alone- he was such a nice guy- and sent me the lamest jokes-
I am done with this thread. Best wishes, Sarah
-------------------- 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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treepatrol
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Like I said in my pm to you I know of 2 als for sure doing good on oral abx's the third I totally lost because I had stopped treating for a 7 month period and when I started treatment again I havent seen him? I switched form friday appts to mondays.
As I said all 3 were als diagnosed by Johns Hopkins Hospital basically told go home and prepair to die.
No wonder they sought treatment elswhere and all three were at the beginning in wheelchairs I know 2 did well for sure but I havent seen them at Drs.
They went from being pushed in wheelchairs and not able to raise head and the one said couldnt even talk to pushing wheelchair themselves into office with out assistance.
-------------------- 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.
posted
Not sure it is as simple as that. From my observations, there seem to be two kinds of responses to aggressive lyme treatment (with an ALS presentation): it helps or it kills them faster. Talking now of bicillin and rocephin, etc. Not sure what the difference is. Hearing theories that the proinflammatory cytokines can kill neurons (this is in the med lit), so if you hit it hard and you are in group two, the neurons can get blasted.
Have a feeling it is going to involve understanding the immune system better in order to sort this out and try and deal with it. Until then, the current idea is to start low dose and see the response. If the herx seems to cause more wasting, then back off on the dose.
This ALS/Lyme is still a black box and we really need someone to do research on it.
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treepatrol
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quote:Originally posted by lou: Not sure it is as simple as that. From my observations, there seem to be two kinds of responses to aggressive lyme treatment (with an ALS presentation): it helps or it kills them faster. Talking now of bicillin and rocephin, etc. Not sure what the difference is. Hearing theories that the proinflammatory cytokines can kill neurons (this is in the med lit), so if you hit it hard and you are in group two, the neurons can get blasted.
Have a feeling it is going to involve understanding the immune system better in order to sort this out and try and deal with it. Until then, the current idea is to start low dose and see the response. If the herx seems to cause more wasting, then back off on the dose.
This ALS/Lyme is still a black box and we really need someone to do research on it.
proinflammatory cytokines can kill neurons (this is in the med lit), so if you hit it hard and you are in group two, the neurons can get blasted. absolutley the weaker or run down you are effects the ability of the body to remove these cytokines.
-------------------- 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.
treepatrol
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Treatment of Lyme arthritis.Cimmino MA, Moggiana GL, Parisi M, Accardo S. Dipartimento di Medicina Interna, Universita di Genova, Italy.
The efficacy of different therapeutic regimens for Lyme arthritis is reviewed. The first treatment for Lyme arthritis, intramuscular benzathine penicillin 2.4 million units weekly for 3 weeks, had a success rate of 35%. Another study employed intravenous penicillin G at a dosage of 20 million units daily for 10 days, which cured 55% of patients. Intravenous ceftriaxone has been shown to be superior to penicillin with a response rate of 94%. However, these results have been challenged in recent reports. Oral doxycycline or amoxicillin in association with probenecid seems to work equally well although neuroborreliosis was more frequent following treatment with amoxicillin. An anecdotal report indicates the usefullness of long-term benzathine penicillin for chronic Lyme arthritis. Long-term antibiotic therapy, which is recommended also for Reiter's syndrome, may be useful for eradicating the sanctuaries of Borrelia burgdorferi. Disease-modifying drugs such as hydroxychloroquine or sulphasalazine, a drug which is commonly used in reactive arthritis following enteric infections, may be of value in Lyme arthritis resistant to antibiotics but have not been tested to date. The role of intraarticular injections of steroids or synovectomy is still controversial. Antibiotic treatment is the cornerstone of Lyme arthritis treatment. Additional interventions should be studied for patients with Lyme arthritis resistant to antibiotics.
PMID: 8852480 [PubMed - indexed for MEDLINE]
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