Systemic vasculitis

[BG]

Any ideas about what to do about systemic vasculitis, other than high dose prednisone, etc.?

I have had it for at least 20 or 30 years and it keeps getting worse despite more than 2 years of antibiotics and more than 3 years of Plaquenil and low dose prednisone. I was off antibiotics from October 2012 to August 2013 because my doctors refused to continue prescribing them and off Plaquenil from April 2012 to August 2013 because of side effects but I’m on the full dose of both again now. Neither has ever had any (positive, lasting) effect on the vasculitis.

Anyone have any experience with this?

Any ideas are welcome. I’m getting more and more desperate.

Barb

[Maz]

@BG wrote:

Anyone have any experience with this?

Any ideas are welcome. I’m getting more and more desperate.

Hi Barb,

Long time, no see….really sorry you’re still struggling, but glad to hear you now have an abx therapy option.

I think your question is a first here…that is to say, vasculitis can be a part of rheumatic disease, in general, e.g. lupus-like manifestations, but also as a separate entity unto itself, but don’t think anyone has asked about tx, per say, specifically for it. Could be my memory is off on that, though, so you might like to try running some searches on the forum to look for past discussions, if any 😉

LLMDs believe that cerebral spinal venous insufficiency (CCSVI) is actually present in 100% of Lyme patients…inflam of blood vessels causing stenosis. There is a AP doc in AZ who believes it’s caused by a protozoan infection that he’s dubbed, “Protomyxzoa rheumatica,” which loves the salty flow-like environment of blood and forms biofilm in the endothelial lining of blood vessels. Mind you, many bugs can do this and plaques in blood vessels are teeming with bugs like chlamydia, mycoplasma, Lyme, etc. This doc, however, believes it is the prime mover of the phenomenon, building biofilm that attracts other biofilm community-loving bugs. Therefore, his approach is to treat this bug (interestingly, with drugs like tetras, artemisinin, plaquenil, ivermectin, nitroimidazoles, clindamycin or macrolides, etc, in complimentary combos), first, after which the other bugs (e.g. candida) are easier to treat when released from its biofilm.

So, if one adheres to this type of theory, then an abx approach is probably not enough, unless using an anti-microbial that is known to break-up biofilm effectively, such as a nitroimidazole, like Tinidazole or Flagyl, while also employing bio-film busters, like systemic enzymes (which, incidentally, also break down fibrin and help to thin blood – but shouldn’t be used alongside rx’d blood thinners for this reason).

I also ran some searches for you and came up with the following – HBOT is apparently helpful for Lyme-induced vasculitis:

http://www.centrehyperbare.com/HBOforLyme.pdf

You’ll find some info on vasculitis caused by Lyme on the Columbia Lyme website:

http://www.columbia-lyme.org/patients/ld_spinal_fluid.html

These options are what immediately come to mind, BG, but others may have further insight for you. If I can think of anything else, I’ll pass it along to you, too.

Barb…just found one more thing…it’s an article on “hypersensitivity vasculitis,” which may or may not be relevant to you, but makes sense in light of Brown’s theory of “bacterial hypersensitivity” or “bacterial allergy.” Right at the bottom is a long list of treatments you could discuss with your rxing physician (care needs to be taken with some of these things due to drug-interactions, side-effects, potential allergies, etc. and not entirely certain of the veracity of the site, with no actual research sources cited, so items would probably require further investigation re: studies):

http://www.goodearthnaturalfoods.net/ns/DisplayMonograph.asp?StoreID=qljs5n5jsasr2lhc0g03n0et95qt2s43&DocID=allergy-hypersensitivityvasculitis

[BG]

Hi Maz,

Thanks for the info. Unfortunately HBOT isn’t available to me and I have tried most of the alternative or complementary therapies listed under the goodearthnaturalfoods link in the past and none of them had any effect despite trying many of them for months or years.

My vasculitis is most likely due to infections and the infections most likely interacted with my genetics to result in SLE and or other autoimmune connective tissue diseases (ANA titer 1:1280, speckled pattern; high SED rate but normal CRP; bouts of lymphopenia, profound bradycardia, etc.) My fingernails are full of small splinter hemorrhages and I’m starting to get permanent palpable purpura or whatever they’re called on my legs, all relatively minor systemic vasculitis symptoms but the most unsightly and an obvious sign of things getting worse.

Barb

[Krys]

Hi Barb,

Are you familiar with Stephen Buhner’s “Healing Lyme Disease Coinfections. Complementary and Holistic Treatments for Bartonella and Mycoplasma”?
He explains at great length (often difficult to understand as many chapters are written for doctors) how bacteria do the damage to endothelial cells, stimulating inflammation through various cytokines to increase the availability of nutrients they scavenge.

p.81-82: “Altering the healthy ecology of the platelets in the blood can cause a great many problems. Excessive bleeding occurs if platelet numbers are too low or excessive clotting if they are too high. In essence certain vascular disorders develop. This is a common problem during mycoplasma infection.
Mycoplasmas should be considered to be primary thrombocytopathic agents. They can cause low -platelet counts (thrombocytopenia), decreased function in platelets (thromboasthenia), and increases in platelets (thrombocytosis). Petechiae (purpuras), small red or purple spots on the body caused by tiny hemorrhages are a common symptom in mycoplasma infections and come from thrombocytopenia.
Vascular lessions form, the endothelial cells swell, the nuclei are abnormal, there is a proliferation of endothelial cells that may occlude the blood vessel. Chronic vasculitis can occur in the brain (causing stroke), blood vessels, heart, spleen, and liver. Vessel wall destruction is begun. Vascular changes including coagulopathy are common.
The mycoplasmas stimulate leakiniess in blood vessels so they can penetrate into the layers underneath them, allowing them access to deeper cellular structures. They stimulate the coagulation of blood at sites of infection in order to scavenge red blood cells themselves. In this instance, they call red blood cells to them rather than infecting them freely in the bloodstream –which they can also do.
Blood platelets, as mentioned, release a number of substances once activated. These include platelet-derived growth factor (PDGF), transforming growth factor beta 1,2, and 3 (TGF-beta [Krys: should be lower case beta of the Greek alphabet] group), fibroblast growth factor (FGF), insulin-like growth factor-1 (IGF-1), platelet-derived epidermal growth factor (RGF), vascular endothelial growth factor. The mycoplasma organisms utilize many of these as part of their modulation of the host immune response.”

If I remember correctly, Borrelia and Bartonella can damage the blood vessel lining, too. So can probably lots of different bacteria.
I think it is worthwhile studying Buhner’s protocol because not only it combines well with abx, but also it addresses, from the very onset, the cytokine cascade and nutrient depletion caused by infection.

His treatment protocol is designed to:
1. Replace the nutrients scavenged by mycoplasmas.
2. Reduce the cytokine cascade initiated by the bacteria.
3. Antibacterials. Abx and/or herbs, supps.
4. Supporting and protecting the affected organs and systems.
5. Enhancing immune function.
6. Addressing specific symptoms not addressed otherwise.
I could not tolerate herbal anti-microbials. Abx are easier for me. But I love the cytokine blockers, immune modulation, protecting the organs (including the heart, spleen and blood), addressing the symptoms and replacing the nutrients.

p.117: It is important to keep in mind that mycoplasma infections, especially of long duration, are first and foremost nutrient deficiency diseases. Second, log-term infection results in specific kinds of damage to certain areas of the body,… Correcting all this takes time. To repeat: this takes time. The greater the degree of nutrient deficiency (and the longer it has lasted), the longer it will take. The greater the damage to the bodily systems, the longer it will take to reverse the condition and restore the body to health. Keep in mind: it can be reversed. It just takes time and focus. In the beginning, progress is infinitesimal; it builds incrementally each day. In long-term chronic conditions you should expect a minimum of a year to turn the condition around, two years if the damage is serious.

I don’t know if it’s helpful, Barb.

The good news is that there are herbalists taught by him who can help navigate the treatment. I have not done the consultation but last time I checked it was $60 and it included 1 month of ongoing support.

Please do not treat the above as an attempt to try to steer you into taking on an additional protocol. I was hoping it would ease up the discouragement and helplessness. And the book is really helpful. I found it to be a goldmine of information and I know I will stay on some supps/herbs for the rest of my life.
May you find whatever it is that will reverse the problems and lead to health at last!
Krys

[BG]

Krys,

Thanks for the info. I had forgotten about Stephen Buhner’s book. I read it once, a long time ago, when I still didn’t fully comprehend what was going on. I think I’ll revisit it now that I’m more aware of how this disease is affecting me. Thankfully, the book is available through the local public library.

Barb

[Krys]

@BG wrote:

I read it once, a long time ago, when I still didn’t fully comprehend what was going on. I think I’ll revisit it now that I’m more aware of how this disease is affecting me. Thankfully, the book is available through the local public library.
Barb

Barb, what you read was Buhner’s first book on Lyme disease. The present one is new: it was published in April or May. It devotes 266 pages to mycoplasmas. The list of bibiography alone, at the end of the book, for both mycoplasmas and bartonella is 113 pages long. The chapters for the doctors are a bit too scientific for me, but they really help one to see how cytokine blockers would benefit people with various infectious agents.
He does not repeat himself, so many great gems that I found very helpful from the first book are not even mentioned in the second one.
May you find you road back to health at last!
Krys

[laurawm]

Hi Krys,

Is it possible to summarize any of Buhner’s recommendations for blocking/managing the cytokine storm brought on by infectious agents? I do a great deal for direct detox, and try to take intestinal “absorbers”, and LDN also helps control cytokine response by increasing multiple endorphins, but I would like more help than I currently know as I feel ready to increase my protocols, but know that will also ensue greater herxing.

Hope you are doing okay.

Best always,
Laura

[Krys]

@laurawm wrote:

Is it possible to summarize any of Buhner’s recommendations for blocking/managing the cytokine storm brought on by infectious agents?

It is a good idea but such a VERY daunting prospect!
Every single page contains something I wished I could post on RBF. Many pages could be quoted whole, without any summery.
If only some pathways will be mentioned, many people with specific problems will think it does not apply to them. Mentioning all the cytokines and how they are blocked / upregulated (there are good cytokines, too, that inhibit inflammation)/ downregulated would mean quoting most of the book!

I meant to start a thread devoted to mycoplasmas and the protocol but when I tried, it soon became just too much information.
A lot of his recommendations that I found very useful was symptoms oriented.
I was at my wit’s end all throughout spring as my autoimmune reactions against brain, organs, eyes were skyrocketing. I became very exhausted bordering fainting, could not sleep, started having swollen glands again, headaches, etc. I stopped abx (swollen spleen, pancreas, failing kidneys, lungs, heart problems — all as part of “autoimmune” reactions to everything, including abx). I had started introducing some of Buhner’s tinctures while still on AP. When I stopped AP, I tried to do the full protocol. The autoimmune reactions disappeared with cytokine blockers. Exhaustion disappeared with specifically recommended herbal tinctures. Sleeping improved for a while, then crushed again. Spleen and lungs improved. Kidneys are OK now. Liver? I don’t know. I could not tolerate herbal anti-microbials even though their range of action is specifically suited to my problems: destroyed mucosa all throughout the body. So I’m back to abx + use just some, as needed, elements of Buhner’s protocol.
Just to list:
Primary cytokine inhibitors:
1. Cordyceps. He recommends VAT grown (instead of grain grown mostly sold). I only found the Chinese Cordyceps by Plum Flower or Mayway (Mayway bought Plum Flower, but one can still see both brand names on various supps). Buhner recommends 1stchineseherbs as the supplier. I found Maxawareness to sell exactly the same one for almost 1/2 price).
2. Scutellaria baicalensis root (not American Skullcap, which is scutellaria laterifolia and is sold as leaf). Everybody is out of stock. I found that Maxawareness carries it. It worked quite fabulously for me, until I got scared. Outside of blocking many bad cytokines it helps abx and herbs reach the brain, by making BBB more permeatable (sorry: I just made up a word!). Because my BB is already leaky, I stopped taking it and I found that the other ones are less fabulous without Skullcap! 😥
3. NAC in big dosage
4. Vit. E
Secondary cytokine cascade inhibitors:
1. Bidens pilosa (also antimicrobial), cordifolia is good, too.
2. Chinese Senega Root (for 30 days only, then a break needs to be taken if it’s still needed. Outside of being a very good anti-inflammatory by inhibiting some cytokines, it enhances the secretion of nerve growth factor (NGF) in the brain, spinal cord, and peripheral nervous system).
3. Green Tea/Epigallocatechin-3-gallate. Inhibits a wide range of cytokines, protects mitochondria, reduces edema in arthritis. Bioavailability enhanced if taken together with Quercetin or ascorbic acid or omega-3 fatty acids or if combined with resveratrol (Japanese Knotweed), vit. E, and/or NAC.
4. Kudzu Root – anti-inflammatory, helps headache, will reduce Bell’s palsy, protects brain and CNS, neuroprotective.

The anti-microbials described in the book also inhibit cytokines and have very wide range of anti-microbial actions:
1. Isatis
2. Houttuynia
3. Olive oil (best if combined with olive leaf, which is anti-viral, not a wide range anti-microbial as commonly quoted on the internet).
4. Berberine-Containing plants (goldenseal, barberry, mahonia, phellodendron).
5.Uva Ursi
6. Pomegranate

Secondary antimicrobials:
1. Anogeissus – excellent but not available in US.
2. Tea Tree oil – only as an inhalant: 3-5 drops in boiling water
3. Noni

Support and protect organ systems:
1. Sida
2. Endothelial protection:
Japanese Knotweed
3. Lung and mucous membrane protection:
Bidens
4. Supporting mitochondrial health and function:
Motherwort
5. Protecting the brain:
Greater Celandine. Works fabulously! After 1st small dosage I woke up, for the first time in many years, with very clear brain and energy of joy singing within my heart. But I develop yellow eyes immediately after a few single drops. It stimulates the liver to release bile.
6. Protecting the spleen and the lymph system:
-Red Root. Works great for me! Stopped swelling of the spleen immediately, also lymph nodes in the neck, armpits.
7. Cartilage, collagen, and joint support and protection
Chondroitin/Glucosamine sulfate
Do not use chondroitin if you are experiencing nerve and brain damage from any coinfection. If you have CNS or peripheral nerve problems, take glucosamine sulfate by itself.

Immune support:
Ashvagandha
Rhodiola
Schisandra

Then symptom treatment recommendations: for anxiety, brain fog, epilepsy, fatigue, pain, sleep disorders, weight loss.

In his first book, Buhner recommended using whole herbs / herbal extracts.
In the present one he mostly recommends alcohol tinctures. Some constituents will not be extracted with stomach acid, bile + digestive enzymes. I found that tinctures are also much cheaper, especially if made by oneself at home. They ARE very easy to make, just some (sida acuta) are only available in ready-made tinctures. Almost all the recommended herbs can be easily and cheaply made into tinctures, using alcohol to dry herb ratio 5:1 (by weight) or 2:1 if fresh. Sometimmes the ratio has to be disregarded as the herbs absorb so much and swell, and they have to be completely covered. Greater Celandine is best used with ACV + alcohol 1:1, also 5:1 alcohol+ ACV to dry herb ratio.

Warm wishes,
Krys

[A Friend]

Barb, Krys, All,

I’m hoping there’s some magic in these links for you and others. Earlier, I had planned to come to the board to paste the information from Dr. Suzy Cohen’s newsletter received today with the fascinating information on propolis.

When I came to the board a few minutes ago, I read your posts mentioning vasculitis. Sounded like we need a lot of brain-storming on this one. Couldn’t resist searching, and ended up with about three. It just might be the propolis post could possibly be helpful for a lot of serious things. Hope so.

These are four links found:

Suzy Cohen RPh — http://www.dearpharmacist.com/2013/10/02/propolis-perfect-immunity-blood-sugar-cholesterol/
Propolis is Perfect for Immunity, Blood Sugar and Cholesterol
[Once the link opens, you can click on the

[BG]

Thanks Krys. I didn’t know Stephen Buhner had published another book. I will try to obtain a copy.

And thank you AF for the info you posted. I plan to follow up on your leads as well.

Barb

[DragonSlayer]

Hello, Barb:

I do not have direct experience with vasculitis, per se, but many people with rheumatic illnesses get this, and I have been told that, along with the primary disease, the vasculitis can be treated so that it is no longer a concern.

Perhaps it all begins in the gut–and intestinal lesions or increased permeability has a strong effect through chronic ‘reinfection’ and molecular mimicry (the basic mechanism for several reactive arthritides). It would be difficult to identify the specific germ or other pathogen causing the trouble, but doing a cleansing fast then elimination regimen could help identify the basic triggers.

Good film to watch: “Fat, Sick, and Nearly Dead,” and this type of regimen would very likely help, to start, but also then eliminate starches and then add back non-gluten starches to see how You react; celiac is often the root trigger for many of these issues, but all starches can trigger certain things like rosacea and ASpondylitis, Crohn’s, chronic ReA, and several other conditions.

We too often do not consider diet enough–but our bones were made by this and it should be no more mystery that they can be destroyed by diet, too! The standard technological diet destroys bones in those of us with AS, and affects other people perhaps in more subtle ways. Study then anti-inflammatory diets of Mercola, Perricone, Seignalet, others but especially Carol Sinclair (“The IBS Low-Starch Diet” with foreword by Professor Alan Ebringer). It takes time and much patience and hard work, but You can get to Your goal where nobody can do it for You and there is no magical pill or genius physician able to help enough to offset basic lifestyle issues associated with chronic illness. The strongest interaction we have with our environment is through diet, but our genes play an important part in who gets what and when.

HEALTH,
John

[BG]

John,

I have relatives who have celiac disease so as soon as I was able I had my DNA analyzed to see if a tendency to develop celiac disease would show up in my genes. It did, it was one of the top five diseases I am predisposed to develop genetically. I have been tested for antibodies in the past and the test always comes back negative but I have suspected for a long time that I have a gluten sensitivity. I’m also lactose intolerant. My doctors still ridicule me when I tell them all this. Anyway, because of all of that, and because of bowel issues, I cut out all gluten from my diet for a year or two but experienced no noticable improvement in anything but the bowel issues. Now that the bowel issues are gone, I consume gluten products once in a while but am still gluten free most of the time. My diet consists of fresh fruit and vegetables, nuts, raisons, figs, yogurt or kefir, extra sharp cheddar cheese, beans, rice, polenta, air popped popcorn, salmon, sardines, smoked chicken, olive oil, coconut oil, butter for flavor, herbs and spices. The only gluten I consume these days comes from oyster crackers sprinkled on top of my salad or soup or taken with meds to prevent nausea and vomitting, or the rare pizza or whatever.

Barb

[DragonSlayer]

Hi, Barb:

Low-grade celiac is very difficult to diagnose, and as You are already aware, just a little gluten goes a long way. The problem I have with what You are consuming is the polenta (great bacterial medium) and popcorn (a thousand knives–Dragon’s teeth–to the gut, a devastating increase in permeability). Aside from these issues, some fresh fruits can be starchy and dangerous (they can be sample-tested with iodine). But overall Your diet is very good, so next step I would consider is elimination regimen that requires fasting but that is because I believe the issue begins in the gut, but in this case I could be WAY OFF BASE.

Our tracts contain over 300 identified bacteria, thousands of viruses, many types of fungi, and some other animals. At least a dozen of these bacteria are known causes of arthritis, mostly reactive arthritides, but the other things also cause problems in certain individuals, sometimes through the mechanism of molecular mimicry (indirect) or even directly issues with their products of metabolism, and C. albicans seems to be extra mischievous by burrowing through our tracts, creating more leaky-gut. I am always in favor of a complete tear-down and eviction of all tenants and then re-implanting while repairing the tract. This requires some fasting, strong antibiotics, herbs, colloidal silver, bitter melon, time and patience.

The key for me is that, if I have a disease I inherited, WHY did I not have symptoms until later in life?!! These Delayed-Onset Heritable Conditions are chronic that implies lifestyle issues.

Good Luck with it, and I hope You find Your answer soon, Regards,
John

[laurawm]

Just wanted to get back to you, Krys, and say thank you for so much information! I think the difficulty is the unfamiliarity with so many herbs and not knowing what will work best it becomes daunting to begin trying so many new supplements – but I have found things that I know are helping me, so the more I can learn and read the more equipped I am to handle the ups and downs of all of this.

Is Scutellaria baicalensis root the same as baicalin? I’ve taken baicalan extensively and found it to initiate quite an immune response (herx) – though all the studies show it to be anti-inflammatory and an analgesic.

AF – I just ordered some local bee pollen in bulk – I don’t suppose this has any propolis in it, but I know it is supposed to be immune modulating – have you heard anything about this? Just curious.

Sorry to be off topic, Barb – pretty sure I have some level of vasculitis as well – hopefully all this info helps us all.

with care – laura

[A Friend]

@laurawm wrote:

AF – I just ordered some local bee pollen in bulk – I don’t suppose this has any propolis in it, but I know it is supposed to be immune modulating – have you heard anything about this? Just curious.

Sorry to be off topic, Barb – pretty sure I have some level of vasculitis as well – hopefully all this info helps us all.

with care – laura

Laura,
While I’ve heard bee pollen mentioned, I’ve never tried any of the bee-related products, but have believed they can be beneficial. I believe Propolis (especially the Brazilian one, because they haven’t allowed the weakening of the Bees with the planting of GMO crops in Brazil. I suggest you keep the article by Suzy Cohen and re-read it in the future. Looks to me like it covers a huge range of functions in the body that many of us with chronic illness need help with. I probably am going to be ordering at least one month of this, to hopefully help with gut issues I’ve developed since taking the high dose D-3 that fouled up my system for the past 3 months (even though I discontinued it after the first week).

It is my great respect for the knowledge of Suzy Cohen RPh (and giving the public the truth about the Pro’s and Con’s of Rx’es and natural products, and even some of the heart procedures, etc. — that I put much weight on what she writes. I did a bit of investigation on the Propolis. And one of the reasons that the Brazilian Propolis is deemed more valuable (and costs more) is probably because the Brazilians have not allowed the big GMO’s into their country. Having GMO crops and the bees feeding on vegetation connected to GMO seeds, etc. does much damage to genes, etc. of the bees and affects their products. Also, the same big company pushing GMOs in other countries is fighting to get this in our country. There is a current article by a well-known physician/specialist who wrote that these seeds in crops can lead to damage and weakening of our genes as well. This is my lay-woman’s view… not a scientist here.
AF

[Author]

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