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[user=869]Mumof3[/user] wrote:
Can Lyme disease lead to Parkinsons? My mum has Multiple System Atrophy (Shy Drager) which is a Parkinson Plus disease.
Hi Mum….so sorry to hear about your Mum. I've seen what neurological diseases can do up close, as it relates to my brother's MS.
The new movie documentary, “Under Our Skin,” documents the case of a major league baseball player who had to quit due to Parkinsons…young guy, too. Turned out he had Lyme Disease and is now regaining full function and quality of life with antibiotic therapy. You can watch a few shorter version movie clips here and one of them includes a brief cameo of the baseball player with Parkinson's. His full story is told in the full length movie version, though.
http://www.underourskin.com/watch_excerpt.html
You might also be interested in the work of Dr Alan McDonald. He is the researcher in the movie who talks about how Lyme mimics Alzheimers, Parkinsons, ALS, MS, etc. The website with his research is pretty wild, but fascinating.
http://www.molecularalzheimer.org/
I was speaking with my Lyme doc a couple months ago in relation to my brother – he's now in a wheelchair and lost function of both legs and his whole right side. Speaking with heart, but realistically with me, he said that once MS gets beyond a certain point, it can be very hard to turn it around with antibiotics – not impossible, but very challenging. I gather it's due to the degree of herxing that is to be expected.
Another website you might find interesting is: http://www.cpnhelp.org which has linked the infection chlamydia pneumoniae to many immune diseases, as well as http://www.immed.org which includes the research of Dr GN.
Peace, Maz
Little digression here: Do any LLMDs take insurance? If so, why not? I was kind of hoping I could find one on my plan. That way the cost of the coinfections panel, etc. would be less severe.
Its frustrating cause we pay almost $600 a month for health insurance and with my current integrative doc, we can't even use it! But we can't get rid of it either, cause my health problems have the potential of being really costly. 🙁
P.S. I am also so sorry to hear about all the people's relatives with health complications on here. This may be a topic for another thread, but why is there so much chronic illness in this country? I don't know a single soul who doesn't have someone who is touched by it….something to think about anyway.
[user=40]Kim[/user] wrote:
OK, I talked to my sister last night and they are all still speaking to me. 😕 The LLMD said my sister does, in fact, have Lyme (probably infected from when they lived in Pennsylvania about 15 yrs ago). Here we go again — this is sounding like a broken record, learning that all these problems started with a tick bite. Another Lyme/SD combo.
Due to all the resistance obtaining the Lyme test for my Dad, he went to the appt without test results. They want to do a therapeutic probe with abx on him and if he has Lyme, he'll feel worse.
I'll let you know if there is any more family drama after they see the doctor again today. :doh:
Glad you and the family are still speaking!!!!! :roll-laugh: I guess it's no surprise to you about your sister's dx and how great that your Dad is being put on a “therapeutic probe!” Now that is my kind of doc! :dude: And good idea to get your Dad's bloods done while he's a captive audience! Your Dad's Parkinson's docs sound just like my brother's MS docs. :headbang: It's like Dr J says in Under Our Skin…”One day questions are going to be asked about how many physicians knew about these infections, for how long…and why they didn't do anything about it!”
Kim, that's kind of you to offer to work on my bro…I may take you up on that offer sometime….although my Dad (who is a retired vet) has even worked on him about this. He's said all along that MS is an infection and, when I told him I was following antibiotic protocol for my RA, he was not surprised one bit and even fathomed a prediction about how long it would take to get well again. He told me of numerous instances where vets used antibiotic therapies for animals with rheumatic-like arthritis and that it worked well. I trust my Dad more than I trust my PCP, actually. When I was 18 months, he was the one to diagnose me with bacterial meningitis, when the pediatrican said I had measles! He got me to emergency and in an oxygen tent on IV antibiotics and pretty much saved my life. He said that he'd seen the symptoms in pigs who get a similar condition…I think it was encephalitis. When we grew up in foreign lands, living in the outback of some pretty rough developing countries, he was the one who would dispense medicines to the family when we were sick and always got us well in short order.
Baby therapy at Christmas – what nicer way to spend the holidays?!!! Such precious moments….life doesn't get much better than that. 😉
Looking forward to the update on your Dad…will be very interesting to see what comes up on his IGeneX testing, too. I so hope this is something that can be turned around for him. I often wonder about Michael J Fox and whether his Parkinsons was related to Lyme, too. Benie Mac just died recently from sarcoidosis and complications from pneumonia…really have to wonder about whether an antibiotic protocol might have saved his life.
Peace, Maz
[user=854]tainabell[/user] wrote:
Little digression here: Do any LLMDs take insurance? If so, why not? I was kind of hoping I could find one on my plan.
Hi Tainabell,
It's frustrating for us all. :headbang: I think you said you'd read “Cure Unknown – Behind the Lyme Epidemic.” It pretty much explains in there why there are these two standards of care for Lyme treatment and why insurance companies are refusing long term antibiotic therapy for chronic Lyme, which the IDSA says doesn't exist.
This medical/political debate was covered this in the last Road Back eBulletin in some depth. If you follow the links in the eBulletin (highlighted in the text), all will become clear. Here is the relevant article:
The recent release of the award winning documentary film, ?Under Our Skin,? by Open Eye Pictures, is being heralded by the Lyme community and wider media as, ?A dramatic tale of microbes, medicine & money, this eye-opening film investigates the untold story of Lyme disease, an emerging epidemic larger than AIDS.?
For some time now, RBF has been acutely aware of the increasing numbers of patients frequenting the support forum who are reporting that they have a rheumatic disease complicated by Lyme disease. Information regarding this has now been added to the main website?s Newcomer?s Section.
Dubbed, ?the second great imitator? ? the first being syphilis, another type of spirochetal infection – Lyme disease has a similar potential to mimic and trigger hundreds of medical conditions, including innumerable rheumatic and neurological diseases. The documentary, ?Under Our Skin,? underscores the prevailing two standards of care that many chronic Lyme patients are currently facing and how the politics surrounding this controversial tick-borne disease has evolved. On the one hand, the Infectious Diseases Society of America (IDSA) describes Lyme disease as an easily diagnosed, limited infection, cured effectively with a short course of antibiotics. They also state that persistence of symptoms may be related to post-Lyme syndrome for which antibiotics have no value and may be dangerous. On the other hand, a growing contingent of chronic Lyme patients and ?Lyme Literate? physicians contradict these assertions. They claim a failure of adequate testing methods for proper diagnosis, that misdiagnosis and under-reporting have led to misinformation about the disease?s widespread prevalence and that significant research has been ignored by the IDSA which clearly demonstrates the persistent nature of this pleomorphic (form-shifting) organism. Lyme Literate physicians further claim that chronic Lyme and its associated tick-borne co-infections require long term treatment with a combination of oral and sometimes IV antibiotics. The end result of this medical debate has meant that some Lyme Literate physicians have been targeted for medical license removal. These targeted physicians, however, feel that they are ethically directed through the Hippocratic Oath “according to my ability and judgment… (To) consider the benefit of my patients…and give no deadly medications.” Indeed, all physicians have been granted approval by the FDA to use their medical discretion in the prescription of safe, “off-label” treatments for a variety of diseases (off-label drugs are those that have already received FDA approval, but may be used in the treatment of conditions other than those for which the drug was originally approved). Meanwhile, many chronic Lyme patients have been caught in the middle, having to seek out physicians willing to treat outside the current standards of care and resulting in insurance coverage being largely refused.
On May 1st, 2008, Connecticut Attorney General Blumenthal issued a press release announcing that the investigation into the violation of antitrust laws by the IDSA resulted in the discovery of ?? serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.? This news has been applauded by the Lyme community in the hope that an unbiased revision of IDSA treatment guidelines will bring greater awareness and treatment availability to this serious, persistent infection and its devastating scope.
The parallels to these current events will be immediately obvious to the patients who report that they are being refused AP by their rheumatologists in spite of supporting studies, such as the National Institutes of Health (NIH) sponsored Minocycline in Rheumatoid Arthritis (MIRA) trials, the Minocycline in Early Diffuse Scleroderma study and the ever-expanding body of scientific evidence pointing to chronic, persistent infections as a cause of rheumatic illness. The end result being that like Lyme patients, many rheumatic patients must seek out physicians experienced in AP, often traveling some distance and at great personal expense, in order to receive their treatment of choice.
As recent events have unfolded in the Lyme community, this has only served to strengthen the resolve of the RBF to continue its preservation of Dr. McPherson-Brown?s legacy, advocating on behalf of patients who choose AP. To these ends, RBF sent a representative to the recent Lyme Disease Association Conference in San Francisco on October 17th to learn more about Lyme disease as an infectious trigger of rheumatic disease. Participation at the conference enabled the making of valuable connections with the Lyme community and provided an enriched understanding of how AP might be shared further with the medical community as a safe, proven approach to treating a variety of rheumatic diseases. [/color][/color]
Peace, Maz
[user=27]Maz[/user] wrote:
Kim, that's kind of you to offer to work on my bro…I may take you up on that offer sometime….although my Dad (who is a retired vet) has even worked on him about this. He's said all along that MS is an infection and, when I told him I was following antibiotic protocol for my RA, he was not surprised one bit and even fathomed a prediction about how long it would take to get well again. He told me of numerous instances where vets used antibiotic therapies for animals with rheumatic-like arthritis and that it worked well. I trust my Dad more than I trust my PCP, actually. When I was 18 months, he was the one to diagnose me with bacterial meningitis, when the pediatrican said I had measles! He got me to emergency and in an oxygen tent on IV antibiotics and pretty much saved my life. He said that he'd seen the symptoms in pigs who get a similar condition…I think it was encephalitis. When we grew up in foreign lands, living in the outback of some pretty rough developing countries, he was the one who would dispense medicines to the family when we were sick and always got us well in short order.
Maz, I can hear the sadness in your voice when you speak of your brother, and I am so sorry. We feel so helpless, but yet somehow responsible for their well being because we know there are options. Your dad sounds like an awesome person, and no doubt, where much of your wisdom comes from. Your brother's steady decline has got to be tearing you up, especially when you contrast that with your phenomenal improvements.
Sending you big hugs…..kim
[user=40]Kim[/user] wrote:
Your brother's steady decline has got to be tearing you up, especially when you contrast that with your phenomenal improvements.
Kim, thanks for the warm hugs…it is tough talking about my brother, because it's so hard to see this big, physically strong guy reduced to relying on others for everything. We all chipped in and bought him a recliner chair with a mechanial lift so he can sit without falling and raise himself enough to slump onto his scooter….but it breaks my heart. :crying: Part of his problem is his stoicism, as he never shows he is suffering in any way, shape or form, so apart from his physical decay and memory problems, you'd never know he had MS. He just acts like it doesn't exist. So, it is difficult when I've come so far and know he might have had the same chance to turn things around, as well.
It seems like such a simple choice to make, doesn't it? This is what is so challenging to fathom. 😕
Peace, Maz
Hi Maz,
Thank you so much for all of the information. I checked out the web-sites and found them very helpful.
I'm so sorry to hear about your brother. It must be so hard seeing him struggle. These neurological diseases are heart-wrenching. It is so difficult watching my mum struggle. With multiple system atrophy, the life expectancy is 7 to 10 years. We figure my mum has had it for 8 or 9 years now. I really wish I knew all of this information when she first got sick. Maybe it might have changed things for her. Now I am just grateful for the time I have with her and joy my kids bring to her.
Anyways thanks again Maz. You are always a wealth of information!
Family drama update:
Dad and sister's second day of appts with the Lyme doc went well. My sister, for years, had been dx'd with Fibromyalgia and Chronic Fatigue, which many doctors believe starts with……..you guessed it…….a tick bite, so treating the Lyme will improve those symptoms. As we speak, my Dad's blood is finally finally finally boxed up and in route to Igenex. This only took about 3 months. :headbang:
More updates when we get those results. I'll never understand why this is so complicated — makes no sense at all.
[user=40]Kim[/user]
One interesting tidbit is that I bough an infrared sauna to help with the detox and it is actually working too well.
Hey Mum,
I haven't had the sauna very long, only about 3 weeks, so a little early to judge. I've read that part of the reason people get these chronic illnesses is because they are not good at detoxing, and I believe that is true in my case. I preheat the sauna to 120 degrees and I don't even break a sweat for the first 20 minutes. I stay in for 40 minutes, so I sweat hard for half of that time. I also do skin brushing while I'm in there and again in the shower after. I think the health benefits of using a sauna would benefit anyone. I was not interested at all in a steam sauna, only the infrared. The one I bought, a Saunex, has your head exposed so it is a little less overwhelming — also, you are not breathing back in the junk you just sweated out. For now, I've been using it every other day, but may increase to daily…..just have to be mindful to replace the nutrients you lost.
I think it's going to prove to be worth every penny and as beneficial as anything else I'm doing.
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