I'm on the Medical Merry-Go-Round

[Gaby]

Hi Lisa,

It strikes me that you are with the wrong specialist. I know you have been with several ones already. The health control system can really be a complete pain until you find the right doctor that you feel comfortable with and that you feel you can work and network with. You clearly have an autoimmune condition and the doc giving you advice is a surgeon, that is, he is a mechanic, typically the kind of specialist that doesn't have a clue what an autoimmune condition entails, what triggers it, what are the systemic effects and so forth. He is good to stitch vessels together and that kind of stuff, but I would not put your condition in his trust. You don't need any stitching either for that matter!

Are you smoking strictly natural tobacco?

That there is some pain involved while doing the FIR sauna suggests that there is some changes going on. How long are you staying there and at what temperature?

Are you taking liposomal vitamin C consistently? How much?

Have you ever been diagnosed with chronic viral infections of any kind?

There are autoimmune diseases which manifests as vasculitis and which involves the formation of immune reactions at ONLY cold temperatures. That is, in a warm country, you may never find out or have those reactions. Usually triggered by many factors, but viruses playing a big role.

Is there a possibility of getting a functional medicine doctor? That is, an alternative medicine doctor which can work with you at addressing factors involved in the autoimmune condition unlike the one you have now that is addressing your condition from a strictly mechanical point of view? I think a good option would be an Internal Medicine doc that is trained in functional/alternative medicine or a family medicine one. Those are the guys who address stuff taking into consideration everything.

Do keep the good work with the diet, it is very important.

Don't despair with the smoking nonsense. Your doctor is obsessed with it because there is a disease where individuals (typically in the oriental race and male) and which I suspect are particularly sensitized to night shade family in a very bad way (the tobacco plant is part of that family), get their vessels obstructed and have other inflammatory manifestations which you don't have. It is genetic too, so you would have already heard by now of someone in your family having this problem. But it has come like a taboo and most doctors can't get over it despite the fact that is relatively rare compared to other conditions. Nicotine is anti-inflammatory, period.

Can you get a hold of some silver solution (i.e. colloidal silver) to cure your wounds? In that way they won't get infected.

 

[Renaissance]

Looks like there are variations of Vasculitis and one variation has been successfully treated with Potassium Iodine:

http://www.ncbi.nlm.nih.gov/pubmed/12634944

Severe livedo vasculitis treated with potassium iodide.

A young woman presenting severe livedo vasculitis (LV) was successfully treated with potassium iodide (KI). Previous attempts to cure her disorder with corticosteroids, low-dose aspirin, and azathioprine in various combinations had failed. To our knowledge, this is the first report of LV treated with KI.

Apparently, it is possible to have severe reactions with certain conditions, so this sounds like something to talk to your doctor about (maybe Psyche knows something about this).

http://archderm.jamanetwork.com/article.aspx?articleid=542682

To the Editor.— The systemic and cutaneous effects of oral potassium iodide remain an enigma. Horio et al (Archives 1981;117:29-31) reported the beneficial effects of potassium iodide in the therapy for erythema nodosum and nodular vasculitis. Not only are the pathophysiologic characteristics of this response unknown, but they allude to occasional induction of vasculitis and erythema nodosum by iodides. Before dermatologists embark on therapeutic programs of potassium iodide for vasculitis, a note of caution should be stressed.Curd and co-workers1 have recently reported four cases with hypocomplementemia and dermal vasculitis in which potassium iodide administration was variably associated with urticaria, angioedema, polymyalgia, and life-threatening systemic illness. They suggest that hypocomplementemia and dermal vasculitis may serve as a clinical marker for such severe potassium iodide reactions. In addition, there are reports of periarteritis nodosa precipitated by potassium iodide administration.2

Are you still taking the liposomal Vitamin C? Vitamin C acts as a natural antihistamine, which apparently is a treatment for some types of vasculitis:

http://wikidoc.org/index.php/Hypersensitivity_vasculitis

The most important part of the treatment is to eliminate the cause of the vasculitis, if at all possible. Antihistamines prove helpful to some patients. If the vasculitis is damaging organ systems such as the kidneys, immunosuppressive agents are indicated.

I would take as much as the stuff my body could handle.

Are you on any other medications? If not, have you tried taking DMSO internally? It'll make you smell (you wont smell it but others will) but if you are at home, then no biggie. It's powerful at reducing inflammation, which seems important for you at the moment. I'm surprised that applying it topically hasn't helped. It does sound like a serious case.

I saw someone mentioning that it is important to have an ANCA test done. I don't know what this means, but it may be something to look into:

http://curezone.com/forums/fm.asp?i=380576#i

Vasculitis means inflammation of the veins. There are 8? different typologies defined by which veins are being attacked - large veins like heart arteries, or smaller veins like in your legs. All of the classifications are in the rare disease category so it's no wonder your doctor didn't know about them, but shame on him for not following up more! He could ahve taken a picture and gotten advice from research hospitals sheesh.

Did he run an ANCA test? Take a biopsy? Find a doctor who knows what the ANCA test is and insist that one be done, along with white blood cell count, SEDs rate, basic metabolic functions, urine, and Lupus/ANA is optional.

 

[Gertrudes]

Oh no, I'm so sorry to hear that you're still fighting this Lisa!

I've just had a look at the book "Nutritional healing" and for Raynaud's disease they recommend taking 100 to 200mg of Coenzyme Q10 daily to improve oxygenation, as well as Coenzyme A as a synergist to Q10. They also recommend vitamin E (which you are already taking). There's a huge list of supplementation on the book, but these 3 are considered the most important. There is nothing for vasculitis though.
This isn't to say that these supplements will help, but rather that it may be worth doing further research on them to see what comes up?

I agree with Psyche in trying to see another type of doctor, functional and integrative medicine often go hand in hand, so that may be another possibility.

Have you also tried other therapies such as acupuncture?
On the less costly side, you can try acupressure (not acupuncture) yourself. At this stage you may need some harsher measures then these, but it is something that you can do on your own, or with a friend's help, and that may help alleviate the symptoms.

This site: _http://www.herbalshop.com/Acupressure/Acupressure_34.html lists acupressure points for several conditions. The page I linked will take you to pressure points for cold hands and feet, and this one: _http://www.herbalshop.com/Acupressure/Acupressure05.html is for circulation problems. I have tried a couple of points the other day for detoxing a drug that made my head feel really fuzzy, and I can say that they felt very sore, but I woke up the next day feeling much better. I won't swear that acupressure did it as I also had a lot of vitamin C, but I'll just leave it as another possibility.

From what I have read nicotine can have a constrictive effect on the blood vessels, although I have no idea whether this is true since I haven't even caught up with the smoking thread. Psyche, (or anyone for that matter), is this another lie or have you heard of any research relating nicotine and blood vessels expansion/constriction?

Take good care!

 

[Lisa Guliani]

Are you smoking strictly natural tobacco? Yes. I stopped smoking mass produced cigarettes several months ago. I suspect all the years of smoking those has done its share of damage though.

That there is some pain involved while doing the FIR sauna suggests that there is some changes going on. How long are you staying there and at what temperature?

I started out staying in the blanket for 20 minutes and increased the time to 30 after three days. I wear sweats and keep my socks on, as suggested to me by Laura. Temp is set to those recommended in the literature that came with the blanket except for the feet area.
38 - upper limbs
44 - waist and buttock
but for my feet, I lowered the setting to 38.
both Laura and the surgeon agreed to set that temp lower.

My feet always hurt when they're warming up. It takes a really long time, even in bed, covered with blankets, fleece sheets and multiple pairs of socks on. I can feel the cold radiating off me. It's like the cold radiating off an ice cube. I've never tolerated real lengthy stays in a sauna in years past. If I stay inside a regular jacuzzi even, or a sauna too long, I get overheated and feel ill. I like the sauna blanket and have been trying not to rush any increase of temperature, to allow my body to get acclimated.
Am I doing this wrong?

I was taking the liposomal Vitamin C three times a day, one tsp. each time.
I am mixing the "C" crystals ( 1/2 tsp. mixed with water) three times per day.

No, I've never been diagnosed with chronic viral infections. My father had lupus and my sister also has it. I was told several years ago that I do not have it. I don't know if anything's changed in that regard. My father also had Reynaud's disease in his hands, and cardiovascular disease, if that is helpful to know.

I'm not sure I can get my insurance to refer me to an alternative medicine doctor. I can ask my primary care doctor, but I'm not holding my breath. He's the one that suggested initially that I had Reynaud's and sent me to a rheumatologist, who then referred me to the vascular surgeon, saying I have arterial blockages. No CAT scan with contrast dye was performed and also no MRI with the dye - which would have confirmed ( no? ) whether or not I indeed have arterial blockages.

My blood levels are good, my HDL is 71 and my LDL is 125.
I am not overweight, my pulse ( radial) and blood pressure are normal.
The pulses in my feet/ankles are not as easily detected without doppler, but they are present - just weaker.
I can try and get some silver solution. Which do you recommend?

And thank you, Psyche. Very much! I'm going to see if I can get a referral on Monday.

 

[Lisa Guliani]

Shane, the tests that have been done are the Doppler studies ( the technician doing the test told me my toes are 'wonky' because they were blue.) and I had blood levels drawn.
During the doppler appointment, the tech performed one test that wasn't indicated by my doctor - she attached these tiny cuffs to each toe to measure the pressures ( I guess that's what it was for, after reading about it). She also had me go on a treadmill.

I'm out of the liposomal Vitamin C and have been taking the crystals mixed with water.

Never heard of the ANCA test. Will read about that. The only thing that the doctors keep emphasizing and repeating to me is: stop smoking now and do not get cold or you're going to lose your legs.

I've never taken DMSO internally - had never heard about it before Laura mentioned it and then i read all about it here on the forum.
This may not be connected, but years ago ( 2000) I was diagnosed with RSD ( reflex sympathetic dystrophy) after a fall resulting in one broken bone in my right foot.
It didn't heal properly and I ended up with ( they told me) nerve damage in my brain stem. I had progressively worsening difficulties with walking, to the point that I ended up not being able to walk at all after a few months. I was sent to various pain clinics and had multiple hospitalizations, all kinds of guinea pig treatments - to no avail. i was in a wheelchair after a while and couldn't walk at all for almost 2 years. They told me I would never walk again and had me on 5 antidepressants ( for nerve pain purposes) which did not work and also calcium channel blockers and a lidocaine infusion into myy belly for three weeks.
Nothing helped but I was turning into a zombie. They also had me on both methadone and xanax. I took myself off of everything after a while and had to re-teach myself to walk.
I did that. They were threatening to cut both my feet off at the time. The symptoms had mirror-imaged so that both feet and legs were affected and also my RIGHT arm up to the shoulder. My feet were purple and blue then also and often swollen. I've asked the doctors if I'm having some kind of RSD flare-up. They say 'no'.
Incidentally, they were wrong - I've walked thousands of miles since then. Until recently.

 

[Renaissance]

I'm out of the liposomal Vitamin C and have been taking the crystals mixed with water.

I've been making a bunch of batches. If you would like a batch and if it is okay with the moderators I can send some to you.

I've never taken DMSO internally - had never heard about it before Laura mentioned it and then i read all about it here on the forum.

If you call around you might find a health food store that carries 99% DMSO, which is a liquid that you would mix with distilled water. You would take it on an empty stomach and not eat anything a half hour after. It's a powerful binding agent and will bind with anything it is taken with to cross the blood brain barrier, which is why it is important to take by itself with no medications in your system, if I remember correctly. The DMSO thread goes into more detail. The amount that was figured best to take was a teaspoon once a week. I don't know if it would be advisable for you to take more or not.

 

[Gertrudes]

I'm thinking whether there is something we don't know about a possible relationship between smoking and your condition.

My husband just got home and we were talking about his father's ordeal years ago, which I described here http://cassiopaea.org/forum/index.php/topic,30168.msg390483.html#msg390483

He smoked two packs a day, but these were chemical loaded cigars. He underwent surgery to reopen a narrowing of his arteries, but was told that it was a condition that wold reoccur should he continue smoking due to, again, the effect nicotine supposedly has on vessel constriction. He did stop smoking and the condition never returned, although that in no way means that one caused the other.

Searching under "blood vessel" on the "Smoking is...good" thread, this came up:

Carbon Monoxide Research

quote from
"The Health Benefits of Tobacco"
http://www.amazon.com/Benefits-Tobacco-William-Campbell-Douglass/dp/9962636450

Carbon monoxide is a by product of tobacco smoke. A report indicates low levels of CO may help victims of heart attacks and strokes

CO inhibits blood clotting, thereby dissolving harmful clots in the arteries. The researchers focused on CO's close resemblance to Nitric Oxide (NO) that keeps blood vessels from dilating and prevents buildup of the detritus of clotting. The researchers commented" Recently NO has been elevated from a common air pollutant...to an [internal] second messenger of utmost physiological importance. Therefore, many of us may not be entirely surprised to learn that CO can... rescue the lung from [vascular] injury," reports the researchers.

I don't know whether I'm simply off track here though, so I'll leave it with a big fwiw

 

[Lilou]

Wow, Lisa, I had no idea you have suffered so much. I would try oral DMSO stat, and it may even be helpful to take low dose steroids, at least to stop the inflammation cascade (?). It seems it has gone from bad to worse pretty quickly. :(

I would certainly look for a better physician. In the back of the book, DMSO, Nature's Healer by Dr. Morton Walker - there is a directory of ACAM (American College of Advancement in Medicine) doctors. (ACAM is headquartered in Laguna Hills, CA) These doctors do use DMSO protocols, which may or may not be useful to your specific condition, but it may give a good lead on a better doctor.

This book was published in 1993, so some of them may not be around still. In Pennsylvania, there are listed 9 doctors (from Allentown to Hazelton). You can also search the acam site for a current list - http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.5457489/k.60DF/Welcome_to_PhysicianLink__18005323688_/apps/kb/cs/contactsearch.asp

Do take care and keep us posted.

 

[Lisa Guliani]

Well, I've been doing some reading. It looks like there are doctors trained in many specialties to treat vasculitis. I did read a little on what the ANCA test is:

Vasculitis Caused By Lupus

In these cases, the antigens causing the immune complexes are often not known. In some cases, the complexes contain DNA and anti-DNA antigens, or Ro (also called SS-A) and anti-Ro antigens. A recently discovered antibody, ANCA (anti-neutrophil cytoplasm antibody), can cause vasculitis in some individuals.
I'm wondering if I could have lupus, in light of my family history of it.
http://www.lupus.org/webmodules/webarticlesnet/templates/new_research.aspx?articleid=2283&zoneid=3

Laura makes good sense to me when she says that whatever the problem is, it didn't evolve in a day and it's probably not going to be resolved so quickly. Gertrudes, thank you very much for your feedback. I am going to look up the liposomal Vitamin C and get some more. Is there so much difference results-wise between using the crystals and the liquid?

Incidentally, this vascular doctor has been in this specialty for 37 years and has received an award. He is well-respected here in medical circles. I looked him up online. My primary care physician recommended him. ( What that's saying, is anybody's guess).

In my reading, I've learned that some cases of vasculitis are resistant to treatment and that treatment seems to revolve around steroids which have some serious side effects and don't always work.
I've been trying to learn more about what might be causing the situation - diet is one possibility and Laura has been really helpful to me in taking proactive measures to heal myself, and I've made significant changes in my diet over the last several months prior to this current health problem. But an auto-immune disease might be the problem too, and nobody has ordered any of the tests that appear to be indicated to determine what kind of vasculitis I have or what is causing it. I wasn't prepared to hear this diagnosis, so I didn't know to ask about any underlying cause.

If it's damage from a gradual carb buildup over the years, that sounds to me like it's not going to be fixed quickly.

 

[Voyageur]

Sorry this is not resolving Lisa. Have to agree with Psyche about autoimmune and was wondering if assessments were every made on Heavy Metals (unless I missed it a few pages back), if this could be a contributor?

 

[Lisa Guliani]

No, no assessments have been made on heavy metals, Voyageur. I'm going to see about getting the internal DMSO and more liposomal Vitamin C and on Monday, ask my primary care doctor about a referral to another doctor. Also, I'd like to know if I have lupus.
Found some more on the effects of lupus on the skin: there are a couple of sections on Reynaud's and cutaneous vasculitis.
http://www.hopkinslupus.org/lupus-info/lupus-affects-body/skin-lupus/

Another thing that's been happening with me is this lack of energy. I'm very tired all the time and just feel drained.
Normally, I'm a very high energy person, but over the last few weeks, I've watched my energy level disappear.
Not sure what to do about that.

Thank you all for your feedback. It helps alot just to be able to get your input on what's happening with me.

Many thanks....

 

[Laura]

One other thing that is VERY important - can't stress it enough - and that is to sleep the right hours at the right time. You should be asleep by 11:30 at the latest and wake up at 7 or thereabouts. If you can stretch that, do so. There is really something magic and mysterious about sleeping at the right time (in rhythm with day and night cycles) in complete darkness, for the right period. There's a thread about it on the forum. I've found that if I don't sleep properly, all kinds of systems go kaflooey.

Hook up with Shane for some liposomal C if you find it to be too expensive (which is why I started making my own too).

Hopefully, you can gradually increase the sauna times like I did. It took awhile to get a sweat going, but the point of doing it is to sweat out toxins.

 

[aragorn]

Hi Lisa, I'm so sorry to hear that you're still experiencing this.

I can't offer much of advice, but a couple of things came to mind. If it's not too painful (I'm no sure if this is a good idea) you might try a spike mattress (Shakti mat). I find it very relaxing to lie on one of those, and it stimulates the blood circulation, too. Not sure how to use it on the legs, though.

Another thing, if you're comfortable with the idea, is to get Reiki. As Laura have stated, it may not have miraculous effects, but it does seem to increase some sort of 'chi energy' in the body. With your approval, I could do some long distance Reiki for you?

 

[Lisa Guliani]

Hi Laura, YEP, I know I should be getting my sleep at earlier times but this has proven more difficult to actually do for two reasons:
Pain while my feet are elevated /in bed is intense.
Upstairs tenants are up all night long making all kinds of racket, dragging furniture, dropping stuff on the floor above my head, stomping around like elephants, plain LOUD. Tonight, I think they were chopping wood IN the house. My sleep cycle is now completely upside down and intermittent. It's rotten to put up with and nobody will make the people upstairs quiet down. I've tried.
Not sure when the foot pain is worse: when I'm vertical, sitting or lying down. It's all the same. I'm hoping this improves soon.
I was using earplugs, but they started making my ears very tender, so I've had to stop that.

Aragorn: Thank you for the suggestions. I know nothing about a spike mattress but will look into that. I'm open to Reiki or ANYTHING if you think there's a possibility it will help.

I have more confidence in trying the suggestions posed on this forum than the ones posed at the doctor's office.

 

[Kaigen]

Hi Lisa! I just catch up on this thread, sorry for your health problems.

Reading the whole thread I was thinking about my mothers friend who had similar problem.
That started after she became computer and she used FB a lot. Then she started with the FB games
which she became addicted to. My mother asked her so many times to stop, to go back to normal life.
Somehow she couldn't, she was living alone with her dog. She was about 65 or so.

My mother said in the chat, when she was going to visiting her in her house, she was always seating on the front of the computer, that was so scary. They diagnosed the feet problems after she had the difficulty with walking.

The point is, they connected her daily life with the diagnosis. She was always seating, and this for hours.
most in the evenings long time.

I did not asked my mother what is going on with her friend, but I'll ask today!
What Laura said about sleeping enough is also very important too.

Take care Lisa!

Hugs for you!