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amurawski
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Posted: Sat Jul 19th, 2008 21:32 |
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Should I consider MP if Lyme-depression is my only symptom?
Hi Folks,
I just learned of the Marshall Protocol from an article in Lyme Times magazine (fall 2006 issue).
I was diagnosed with chronic Lyme disease and babesiosis about four months ago. I was off the charts on my Western Blot for borrelia Burgdorferi, and am considered positive for Lyme disease even by the CDC's conservative criteria. My only symptoms are recurring depression (often severe) and night sweats with anxiety. My test results for Bartonella came back negative, but I've just finished a course of Levaquin, since the Bartonella test results are not reliable. I'm being treated by a Lyme-literate MD who is a member of ILADS. It appears likely that I've had this infection for 28 years. I'm in my fourth month of oral antibiotics.
I have no inflammatory symptoms - unless I'm suffering from inflammation of the brain. My only physical symptom is night sweats due to babesia.
It's difficult to say whether my symptoms are related to sun or bright light exposure. I've had some of my worst episodes of depression in the summer, but the dark winters in Seattle have not provided much relief either.
I'm wondering whether to get a vitamin D test, and whether I might be a candidate for the Marshall Protocol. Of course, I'll raise this with my doctor when I see him next week.
Thanks for any feedback.
Anthony
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Chris
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Posted: Sun Jul 20th, 2008 00:52 |
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Anthony,
Should I consider MP if Lyme-depression is my only symptom?
That's a strange way to phrase it. You have Lyme, and your only current symptom is depression, and want to know if you should address the underlying Lyme. Well, not if you believe the Lyme will go away by itself, or never get worse. In other words, YES.
My only physical symptom is night sweats due to babesia.
And what proof do you have that this symptom is specific to babesia? It's rather common among the auto-immune crowd, including those who never tested positive for babesia. If this was your only symptom, the answer to the first question would still be YES.
It's difficult to say whether my symptoms are related to sun or bright light exposure. I've had some of my worst episodes of depression in the summer, but the dark winters in Seattle have not provided much relief either.
How about some of your symptoms being tied to the hormonal shifts of either going between the extremes of light & dark? Or how about something else entirely as the basic cause, like infection. We keep seeing more and more science supporting the MPs association between illness and depression and other mental misfires:
See Sick and Down in the latest (July 10, 2008) Science News. Or Amy Proals article on Oxytocin
I'm wondering whether to get a vitamin D test, and whether I might be a candidate for the Marshall Protocol. Of course, I'll raise this with my doctor when I see him next week.
I'd say YES, and YES. But then I'm not a doctor, just speaking from personal experience.
See: D-Metabolites Tests
And: What is a therapeutic probe? , as the D-tests can have false negatives.
My wife's diagnosis is RA/Lyme, and I have a son with Lyme. They both have co-infections, though I don't remember the mix of Babesia, Bartonella, Erlichia, etc.
The wife is gradually getting better. The son went your route, with a LLMD, oral & injected antibiotics. They are both showing improvement. With the wifes RA going away, we know that it's something no other protocol can do. The son is showing improvement, but it's still close to 2 years and he's still on heavy doses of abx, and the doc is still changing stuff around as the test results show different infections. Other Lyme patients have called it a 'carousel effect'. By trying to target one specific bacteria at a time, the others just grow into the abandoned niche, and the patient ends up cycling back to fight bacteria previously eliminated. The MP is a broader spectrum approach, and since the goal is to improve the immune system it works more completely (think of the old story about the alligators and draining the swamp). It doesn't assume that we can test correctly for all the various chronic bacteria, so the MP tries to drain the swamp by getting the immune system healthy.
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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amurawski
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Posted: Sun Jul 20th, 2008 04:09 |
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"That's a strange way to phrase it. You have Lyme, and your only current symptom is depression, and want to know if you should address the underlying Lyme. Well, not if you believe the Lyme will go away by itself, or never get worse. In other words, YES."
I think you misunderstood my question. I wasn't asking whether I should seek treatment for Lyme disease. I'm already being treated. And I certainly wasn't suggesting that it would go away by itself. Otherwise, I wouldn't bother going to an LLMD. My question was whether the Marshall Protocol is indicated where there appears to be no indication of inflammatory disease.
The Science & News article you referenced points out that cytokines are the primary suspect in what's come to be know as inflammation-induced depression. Based on what I've learned so far about the Marshall Protocol, it is premised on evidence that CWD-infected macrophanges promote symptom-provoking inflammation. I've suffered from recurring depression for 28 years, and have never suffered from any inflammatory symptoms (unless, of course, I have inflammation of the brain). This is the reason I'm asking whether MP would be indicated in someone with no inflammatory symptoms.
"And what proof do you have that this symptom [night sweats] is specific to babesia? It's rather common among the auto-immune crowd, including those who never tested positive for babesia. If this was your only symptom, the answer to the first question would still be YES."
Night sweats are common symptom of babesia. I tested positive positive for babesia. Therefore, as of now, babesia appears to be the most likley cause of the symptom. If treatment for babesia is unsuccessful, I'll look into other possible causes.
"How about some of your symptoms being tied to the hormonal shifts of either going between the extremes of light & dark? Or how about something else entirely as the basic cause, like infection. . . ."
I believe infection with borrelia Burgdorferi is the cause of my depression. Hence the reference to Lyme-depression in my subject line. I'm not sure what led you to think otherwise.
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Rico
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Posted: Sun Jul 20th, 2008 15:42 |
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Anthony, Chris spelled it out for you.
See: D-Metabolites Tests
And: What is a therapeutic probe? , as the D-tests can have false negatives.
Here's more:
Vitamin D Tutuorial
What is Th1 disease?
If you want to know whether you're a candidate for the MP, perhaps start with the D-tests and/or the therapeutic probe.
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Essential Info; FAQ; ABC's of MP; Side Topics; Perspectives
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Knochen
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Posted: Sun Jul 20th, 2008 16:30 |
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I think you misunderstood my question. I wasn't asking whether I should seek treatment for Lyme disease. I'm already being treated. And I certainly wasn't suggesting that it would go away by itself. Otherwise, I wouldn't bother going to an LLMD. My question was whether the Marshall Protocol is indicated where there appears to be no indication of inflammatory disease.
Lyme is a Th1 disease, so the Marshall Protocol is the only way to actually cure yourself. Other antibiotic protocols will help to some extent, but they do not address the cell wall deficient (CWD) bacteria that are at the root of the problem, and the disease will reassert itself after you stop your current treatment.
If your disease hasn't manifested itself in overt inflammation, count yourself very lucky. It's very typical for Th1 sufferers to have some degree of illness where they can still function, then suddenly have a triggering event that pushes them over a threshold into very acute problems. These problems can take many forms, but all have a single factor at the bottom of them. That's what the MP treats, so it covers a lot of syndromes and diseases. If you can catch your disease before that major tipping point, so much the better!
Give yourself a couple of weeks to really read over the material and become familiar with the concepts. It's complex and much of it does not follow the current doctrine, so your instincts can throw you off. However, the molecular science is there to back up the claims of the MP, as are the people on the MP, many of whom have suffered through the standard treatments for many years and only found relief with the MP. So take your time and get your head around the material before you make any decisions.
In particular, be sure to understand the failure of Koch's Postulate in the Th1 disease model.
http://bacteriality.com/2007/08/28/horizontal-gene-transfer/. Fixation on a particular bacterium or disease definition (Lyme, fibromyalgia, etc) can really blinker your understanding. They are merely handy descriptors of outward symptoms. You doubtless have many more pathogens in you and if/when they express themselves, you could go from bad to worse in short order.
Post Treatment Lyme Disease Syndrome
Definition, symptoms, transmission, testing, treatment, MP Member experiences.
Will the Marshall Protocol treat co-infections?
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.
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amurawski
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Posted: Mon Jul 21st, 2008 20:43 |
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Thank you, Chris, Rico, and Knochen, for your responses. I'll certainly look more at the Marshall Protocol, and will likely get tested per your suggestions.
I should clarify that I haven't been as lucky as it may seem. I've been through 20 plus pscyh meds, ECT, and severe, life-threatening depression that can last without respite for years at at time. My most recent long-term episode lasted from 2003 to mid-2007.
I just checked some references, and it does appear likely that my depression is caused by brain inflammation: "All the clinical manifestations, acute or chronic, of infection with B burgdorferi are characterized by strong inflammation with the production of several proinflammatory and anti-inflammatory cytokines with an aberrant innate proinflammatory response19 and inflammatory brain changes.20" Bransfeld, Robert, "Lyme Disease , Comorbid Tick-Borne Diseases, and Neuropsychiatric Disorders," Psychiatric Times (12/1/07), citing Kisand KE, Prukk T, Kisand KV, et al. Propensity to excessive proinflammatory response in chronic Lyme borreliosis. APMIS. 2007;115:134-141; Oksi J, Kalimo H, Marttila RJ, et al. Inflammatory brain changes in Lyme borreliosis: a report on three patients and review of literature. Brain. 1996;119:2143-2154.
Thanks again for your help.
Anthony
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amurawski
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Posted: Mon Jul 21st, 2008 20:54 |
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I guess I should have said that my depression is related to brain inflammation, rather than saying it's caused by brain inflammation...
--Anthony
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Chris
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Posted: Mon Jul 21st, 2008 21:54 |
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Anthony,
I'm sorry if I misunderstood your question. And maybe somebody else could have written the same info in a less confrontational manner; I'm not always good at that.
The point about cold sweats and babesia is that it is common, and just because you have babesia doesn't let you jump to the conclusion that babesia is the only thing triggering the night sweats. It's not an unreasonable hypothesis, but with what we know now about TH1, it's likely there are other things in the mix. Folks without a positive lab result for babesia get sweats too.
I guess I misread the phrase "I just learned of the Marshall Protocol", as meaning you had read a bit of what the MP was, and not just that it existed. The experience with the MP is that any one symptom that might be auto-immune should be enough to take the D-Metabolites tests.
I am surprised that the LLMD didn't link Lyme to depression for you. I don't have the link at hand at the moment, but somewhere on the web is a video of the author Amy Tan talking about how her depression was cause by Lyme. (search for Literati with Lyme).
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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amurawski
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Posted: Mon Jul 21st, 2008 22:50 |
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Thanks, Chris. Sorry if I seemed snappy. I've spent half the month in bed because of depression, so my fuse was a little short.
I usally suffer from depression for about 5 to 7 days each month. For the past 18 months, I've been able to keep it somewhat in check with meds (Zoloft & Adderall), vagus nerve stimulation, and running 7 to 10 miles daily. But this time I had two episodes back to back.
I read about the MP a few days ago, and then it struck me that just prior to each of my last two episodes, I spent about half a day out in the bright sun without my shirt on (the first time at the beach, and a few weeks later at a water slide park). I've also noticed in the past that some of my worst episodes occur in the summer, though I haven't been spared in the winter. I seem to tolerate moderate exposure to the sun - but obviously I can't know how much vitamin D affects me until I try out the MP.
It was actually my LLMD who suggested that I be tested for Lyme, although, in retrospect, it took him longer that I would have expected. But I have no complaints - he's the best doctor I've ever had. I was at his office for a routine checkup a few months ago when I picked up a copy of Lyme Times off his reading rack. I had no inkling that my wife, four year old son, or I might have Lyme disease. I didn't even know that my doc was an LLMD. He was only treating me for routine medical stuff and the depression. I had never mentioned the night sweats. And he had never seen my wife or son.
Within minutes of looking at Lyme Times, it was a no-brainer that my son and wife needed to be tested. My son was almost diagnosed with autistic spectrum disorder and pervasive developmental delay, and was finally tagged with sensory processing disorder. My wife was diagnosed with MS eight years ago. They tested positive, and my LLMD had me tested as well.
I'm sure I'll be checking in regularly here.
Thanks again,
Anthony
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Chris
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Posted: Mon Jul 21st, 2008 23:29 |
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Anthony,
Snappish? Not like we haven't all done that around here. I'm going to have to clean up my act in that area, as I don't have much of an illness excuse any more.
Wife with MS & son on the autism spectrum, and all with Lyme?
Really bites when it's the whole family, doesn't it. That was my situation too, but with less problematic diagnoses than MS and autism.
However, I think you've hit the trifecta here. While the number of patients with autism or MS are small (or they aren't posting), your family won't be the first to try the MP for those diagnoses.
I'm not at home now, so don't have my bookmarks for these things at hand.
Best wishes,
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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amurawski
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Posted: Thu Sep 4th, 2008 20:30 |
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I'm planning on having my D metabolites tested for the first time. I suffer from neuropsychiatric Lyme disease, i.e., primary Lyme-induced depression. I have no physical symptoms of Lyme disease. I'm able to control my depression about 60-70% of the time each month with medications, vagus nerve stimulation, and exercise. Should I have my blood drawn for the vitamin D metobalites tests only while I'm symptomatic? In other words, am I less likely to get meaningful test results if my blood is drawn while I'm asymptomatic? Many thanks, Anthony
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natalie17
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Posted: Fri Sep 5th, 2008 05:26 |
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Hi Anthony,
I have merged your most recent question with your current thread for continuity. Please condintue to ask any further questions in here  .
...am I less likely to get meaningful test results if my blood is drawn while I'm asymptomatic?
To my knowledge, no, it will make no difference.
Natalie.
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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amurawski
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Posted: Tue Sep 9th, 2008 00:09 |
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Thanks, Natalie. I appreciate the feedback.
Anthony
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