posted 27 April 2004 12:55               

No one book that I know of just lots of reading of different Drs observances.

posted 27 April 2004 13:27            

I'll ans. Your questions as they relate to me, and/or my best understanding of what I know of the autoimmune disorders:

1) In Sarc the BP can also be very low. Benicar is still used, and BP is moniotored. In most
Of the traked cases it's normalized at some number. There were a fw people who experienced dizziness. Low Bp is not a show stopper.

2) In My opinion, Kanes therapy is a detox - getting rid of the residual crap the inflammatory process creates - so you feeling OK becuase you're staying even with the board. I don't think the Kane therapy affactes the Th1 inflammatory pathway. - or if it does - I've never seen it explained.

3) I'm not overweight - but I tried the low to no carb diet in the 80's. It didn't make a difference for me. Fasting did though. I used to think I was just allergic to all foods.

4) Can't answer this one - never took it or researched it.

5) It's been proven that Mellitin (a component of honey Bee Venom) will kill Babesia and Lyne in the blood concentration is high enough. Plus after a sting, the immune system is kicked into high gear - This is an Alt therapy that worked for me in the past - . I beleive to lower the burden.
I don't have an experience with Samento - other than a months trial (it did nothing for me)
But on Eurolyme, there has been alot of favorable discussion.

6) Personally - I had sunlight sensitivites big-time...Bad enough at time to make me really nauseous and vomiting. I also had swollen lacramil glands - these were the reason's they suspected Sarc - but I'd already had the Lupus diag... So they left it at that. This seemed to fluctuate over time.

posted 27 April 2004 13:46               

I'm all for symptomatic treatment if it helps quality of life...anyway, I'll probably do a little research later this week or next week. I'm a "less is more" person (sort of like you)...right now hyperbaric is still holding me above water and I plan to add ozone back in. Not exactly looking forward to the latter as its such a powerful modality, but longterm, I believe it has the potential to get rid of so many varieties of bugs--and if we don't have the antigen, then we won't have the kaflooey response, as the sarc. articles point out. I found with only a few days of ozone, candida symptoms were ameloriated...but the die-off systematically warn't no fun...

Never had sunlight problems myself. Always feel better in the sun.

I'm glad Scott is feeling better on Day One. Anything that can improve a lymie is a good thing.

posted 27 April 2004 13:57            

I'm not writing off Kane's protocol - I said I just never saw it explained as modulating the TH1 inflammatory pathway.

Treepatrol:
The theory is that if the inflammation is reduced, then your own immune system will be more robust. An immune system which is working well will work in conjunction with the antibiotics to kill the pathogen(s).

Barb

posted 27 April 2004 14:48               

quote:

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Originally posted by TheCrimeOfLyme:
I got it wahoo, I finally understand.

Tree doesnt. LOL I have no one to pick on today Tree

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NOW YA DID IT so your nose got sore and you decided to pick on me hahahaha

posted 27 April 2004 14:51            

Jen13,

SarcInfo didn't give me all the answers, just most of them. However, you guys gave me the critical missing pieces. Borrelia grows better at 34C than at 37C (ie, 98.6F). It also prefers less oxygen. I have seasonal and climactic variations in my symptoms. By the end of summer I feel pretty good. By winter I'm miserable again. I also feel much worse during cloudy/dark weather (loosely correlated with a drop in barometric pressure). I tried bright light "therapy" for Seasonal Affective Disorder for around six years and it didn't work. In fact, it made me worse. Here's what I believe happens to me:

Like many of you my body temperature is below normal. I think borrelia thrives in us for that reason. I think the reason I go into remission during summer is because of the heat, not having anything to do with light-mediated entrainment of circadian rhythm, as the SAD theory goes (which, by the way, I now believe is a pretty SAD theory).

Likewise, I feel better when the barometric pressure is high (loosely correlated with sunny weather). Again, this effect is not mediated by the presence/absence of entraining bright light. It's the dissolved oxygen that I think is at play.

You can imagine my frustration then at learning how the Sarc folks feel worse during sunny weather (this was before I knew about lyme) because that didn't seem to apply to me. Alas, there ARE sarc folks who feel worse during rainy weather. I found two posts about this--not many, but they were sarcoiders, nonetheless. One of the posts was on the SarcInfo site, and the moderators there discounted this patient's testimony. I emailed Dr. Marshall that I thought he was over-looking something. He replied, but is a very busy guy and didn't give much thought to the issue.

Several years ago, before I knew about SarcInfo and Lymenet, I tried one last desperate attempt to make the bright lights work. It was during winter when I was crashing. I worked my way up to 3 bright light boxes (22,500 lux in all) for over one hour a day. It was devasting. For the first time I became frankly disabled. My memory was so bad that I couldn't remember the first part of my sentence in order to relate it to the second part. I'm mean I couldn't communicate clearly to people. There were times I nearly passed out. The fatigue, nightsweats, etc. were brutalizing. It took months to regain my baseline misery. Obviously, I gave up on bright lights, but it would take me another year and half to realize what had happened.

During the beginning of last summer I started to mow the lawn (I avoid bright sunshine generally, because of mild photophobia) and became intensely thirsty for about two weeks. Importantly, I also had a strange metallic taste in my mouth. I went to the doc who tested me for diabetes which was negative (I was actually disappointed because I was willing to have diabetes if it at least explained my problems). The doc did, however, mention that a year and half earlier (during that horrible episode) I had high levels of phosphate and calcium. The doc was clueless, but it was critical. The hypervitaminos D that can occur during elevated inflammation (as with sarcoidosis) can result in elevated calcium and phosphorus. The World Sarcoidosis Society actually emphasizes how Sarcoidosis can mimick diabetes (which is what I went into the clinic to be checked for!). It can also cause a metallic taste.

I believe now that at the beginning of summer, when I wasn't yet in remission, the extra vitamin D precursor that resulted from sun exposure became rapidly converted to the active form (in an unregulated manner). I felt the effects, but after another month or so of summer heat the bacteria had taken up a defensive posture (cysts, L forms, whatever). But during the winter, when the infection was very active, I blasted myself with bright lights and the resulting D precursor was rapidly converted to the active 1,25(D) form.

I'm committed to Okam's razor (which says that the simplest explanation is usually correct). In this case, however, I believe that no less than three variables in the weather affect me. Temperature gives me a seasonal variation; superimposed on that is the more rapidly fluctuating barometer; and sunlight loads me up on vitamin D.

Please take the time to investigate what SarcInfo says about vitamin D. In short, we have a reservoir of vitamin D precursor that the kidneys convert, in a regulated way, to the active form. During inflammation, the immune cells convert so much of the precursor to the active form that the kidneys lose control.

posted 27 April 2004 15:26            

I had the seasonal problems also. But I had Lyme long enough to be able to see 24hr, weekly, yearly and every 4 to 5 year cycles of symptoms - varying from the slight to the very debilitating.

I knew the sunligh exacerbated some symptoms sometimes - but not always. I probably felt better FASTING because I wasn't ingesting any extra vit D.
Barometric swings (whichis really atmospheric pressure) will always affect fluids - and this will be felt in people who have slight eodema (swelling) from inflammation.

I imagine alot of things will fall into place when people really understand this.

posted 28 April 2004 05:52               

You have my attention. I go through the same exact thing that you do. In fact, I had just started abx last April when weather was turning nice up here in PA and I felt GOOD up until November when it got really cold. All of Nov, Dec, Jan, Feb, I felt like complete crap.

Now that its breaking again, I feel "cured" and or in Remission.

So do I need in the winter months to take phosphorus and calcium to do something with the stored Vitamin D?

Im confused. Is there a safe way to counter the winter blues/intense lyme symptoms?

Thanks

posted 28 April 2004 08:19            

quote:

---

Originally posted by treepatrol:
[QUOTE]Originally posted by J123:
[b] How do you know that?

---

Thank You. That's exactly the type of info we need to see posted. I had read some of those reports. It will take me weeks or months to digest.

Are you saying all CWD are Borrelia sp.? Or are other bacteria capable of forming CWD forms? Just spirochetes?

posted 28 April 2004 08:38               

Learning is always open minded or at least keep looking.

Or the the way the bible puts it.

posted 28 April 2004 11:19            

>Im confused. Is there a safe way to counter the winter blues/intense lyme symptoms?

I have a bachelor's degree in psychology and another one with a double major in chemistry and biology. I know what qualifies as science and what doesnt rise above the level of philosophy. Psychology is a load of crap. At the beginning of this nightmare I got snared by the psychiatrists and even got my degree in psychology to find out what's behind "major depression." Smoke and mirrors.

I eventually got bogged down in the CFS/FM forum for awhile, before finding out about Lyme. The CFS/FM folks tolerate a lot of psychobabble. I was thrilled to read all the responses to Dougie's "WOW- I didn't have Lyme after all" post. You guys really have backbone.

The short of it is, don't justify the term "winter blues." We're not "hibernating" as the SAD theorists like to say. What we experience is far worse than that. As long as they can minimize the severity of what we feel, by invoking terms like "blue" and "hibernating", then they will get away with this BS. I suspect that there may be a sea of Lymies who are trapped in the SAD paradigm because they don't know about Lyme.

I have yet to study the nuts and bolts of the angiotensin/Th1 issue but so far I have every reason to believe that Benicar + antibiotics is the way to go.

>So do I need in the winter months to take phosphorus and calcium to do something with the stored Vitamin D?

Vitamin D is a steroid that has both hormonal and autocrine/paracrine functions. One of the hormonal functions (of the active form) is to regulate the expression of proteins in the GI epithelia that control the transport of calcium and phosphate from food into the bloodstream. Hypervitaminosis D leads to the over-expression of these transporter proteins with a concommitent over-uptake of calcium and phosphate. The excess calcium can cause some of the hypervitaminosis D symptoms (which is only a subset of all my symptoms), but to the extent that I understand this issue, most of these particular symptoms are caused by the vitamin D directly. You'd want to verify this, though.

>I go through the same exact thing that you do.

posted 28 April 2004 13:14            

ARTHRITIS - Vitamin D - In a mouse model of arthritis in which animals were infected with Borrelia burgdorferi, arthritis was prevented by treatment with 1,25-(OH)2D3 beginning 14 days post- immunization and continuing for the duration of the experiment.

Mice with established collagen-induced arthritis were treated with 1,25(OH)2D3 or mock-treated. The 1,25(OH)2D3 treatment significantly decreased arthritis severity. The authors conclude that vitamin D or its analogs may have benefit in the treatment of arthritis.

"1,25-Dihydroxyvitamin D3 Prevents and Ameliorates Symptoms in Two Experimental Models of Human Arthritis," Cantorna, M. T., et al, Journal of Allergy and Clinical Immunology, January, 1997;S186/Abstract 750. (Address: M. T. Cantorna, Department of Biochemistry, University of Wisconsin, 1300 University Avenue, Madison, WI 53706 U.S.A.) 26690 [rhe]

The minerals calcium and magnesium are so essential to bodily function that whole books could be dedicated to their functional importance to anti-aging and the body's minute by minute requirements. In order for calcium to be absorbed, the body must have sufficient magnesium and Vitamin D.
http://www.hmscrown.
com/Cal_Mag.html

posted 28 April 2004 15:00            

We are not talking about creating a deficiency of vit D in the body.

As long as there is chronic inflammation in the body, the bone turn over rate will be dysfunctional, regardless of the mineral status. That's why in young people (20's and 30s) who have endured long term chronic inflammation, so many have osteopenia.

I'm not sure if it's necessary for all the readers on the board to understand the role of ARBs and inflammation - but the Doctors should have the opportunity to read the protocol.

Barb

posted 28 April 2004 15:01            

1,25-Dihydroxycholecalciferol prevents and ameliorates symptoms of experimental murine inflammatory bowel disease.
J Nutr. 2000 Nov;130(11):2648-52.

I think this may be the one you’re thinking of:

J Nutr. 1998 Jan;128(1):68-72.
1,25-Dihydroxycholecalciferol inhibits the progression of arthritis in murine models of human arthritis.
Cantorna MT, Hayes CE, DeLuca HF.

They show that supplementation with 1,25-(OH)2D3 reduces borrelia-induced arthritis. It would've be nice if they would have actually measured the influence of borreliosis on vitamin D levels. That is, I’d like to know what the levels of 25(D) and 1,25(D) were independent of the supplementation.

posted 28 April 2004 15:09               

Thanks for your reply. What I meant by "Blues" though however, has nothing to do with psychological problem, what I did mean however, was that I get symptoms in the winter, not of psychiatric nature.. neurological.

I was one of them with the backbone, trust me.

posted 28 April 2004 16:54               

quote:

---

Originally posted by Marnie:
Re: vitamin D:

ARTHRITIS - Vitamin D - The minerals calcium and magnesium are so essential to bodily function that whole books could be dedicated to their functional importance to anti-aging and the body's minute by minute requirements. In order for calcium to be absorbed, the body must have sufficient magnesium and Vitamin D.
http://www.hmscrown.
com/Cal_Mag.html

---

Well,

I guess that does it! I'm moving my computer desk outside!

posted 29 April 2004 08:48               

quote:

---

Originally posted by free2reckon:
Tree,

This is how borrelia is causing the disease.

What you are not getting is that borrelia get's this inflammatory disease rolling out of control and it then becomes self propelled... a life unto it's own...on top of the borreliosis.

If we don't address this vital part of the disease, we will not be as successful as we should.

...and the Truth shall set you free, Amen!

Scott

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