Devastating Diagnosis

I just got a diagnosis this week that *partially* explains my profuse hair loss over the last few months. I have an autoimmune disorder called "mixed connective tissue disease" leaning towards lupus. I have had hair loss, starting several years ago, but it was hardly noticeable. This year, I've lost about 50% of my hair over the last few months. This disease targets the heart, lungs, and liver.

A month ago I completely quit alcohol and made some other adjustments to my diet. My hair loss has slowed considerably but not stopped. I do have thyroid issues and take medication, but all of my tests come back normal, as do the hormone tests.

I know I have MPB, with the hairloss in the classic areas, but I also have diffuse hair loss.

I also get "cluster headaches" in the winter. They are called cluster headaches because they appear during certain months of the year, along with a season change. Mine come in the winter months, and are devastating. They are not called "suicide headaches" for nothing. I found that drinking a few glasses of wine per night made the cluster headaches less severe. Yes, alcohol is a vasodilator, but it seems that in larger quantities it is a vasoconstrictor. I learned this by experimentation, and confirmed this with research. I can't help but think that the lupus and headaches are connected. When I research, both are connected to an "erratic lifestyle." I was an international flight attendant for many years. Evidently "erratic lifestyles" mess with the pineal gland and cause it to go awry.

I am posting this in the hopes that I can get some ideas for natural treatment. Perhaps my experiences will help someone else. So far my only symptoms are fatigue and hair loss. My doctor tells me that "when symptoms worsen" then he will consider treatment, which no doubt involve quantities of toxic chemicals.

I have been trying to get a handle on rife machines, and rdkml and whodathunkit have been helpful in that regard, but I realize that the learning curve on that is steep. I'm going to learn as much as I can, and then purchase a rife that suits my pocketbook. I am leaning towards the f-165.

RNP antibodies--5.3
ANA w/reflex--positive abnormal.

Thanks for any suggestions.

Do your best to keep your ph in an alkaline state.
Apple cider vinegar is a good start. Organic "with the mother"

Hi SloeMoe,
I appreciate your response. I have not responded well to ACV in the past, but will try it again. I do have a zapper, and it hasn't burned me lately, so I feel that I am somewhat alkaline, at least.

Sorry about the diagnosis.

FWIW, mixed connective tissue disorder with it's related lupus, scleroderma, and polymyositis are sometimes misdiagnosed as lyme.

With your hair loss mold might be pretty high. Get a handle on mold and your hair loss might reduce.

Honestly I would recommend a saliva sample test from Dr. Loyd from royalrife.com before buying a Rife machine. IMO, the saliva sample test will tell you if a Rife machine would be needed for your diagnosis and if so what should be run on it.

rdkml,
Did you mean that sometimes it is lyme when it is diagnosed otherwise? Or vice versa? I think the saliva test is a great idea. I will get that done. I will also look into mold.

Yes, that is correct. Sometimes it is lyme when it is diagnosed otherwise.

The saliva sample will tell how high your mold levels are and many others as well. Dr. Loyd will then tell you what supplements can be taken to lower or eliminate the load.

I just went to his website and printed out the form to get things started. Thanks for all this info.

If I knew about his methods earlier, I would have saved years of my time researching and experimenting to find what works and what doesn't.

I personally have never done a saliva sample from him but I follow his protocols and what he recommends works and the easiest methods in my experience.

If you need to contact him, you'll want to call and not email.

There is a form for the saliva sample submission that I printed out. Lots of questions on diet and current and past health issues. I guess there is a fax number for it. I haven't come to a phone number yet--he just has a lot of forms, and you have to join his organization, which is fine.

I will get organized with this later in the day. Thanks for this recommendation. I can see where it would cut to the chase on a lot of issues, and save a bunch of time.

misty, I am very sorry to hear this.

I read recently about someone beating lupus with natural methods, but I can't for the life of me remember where. I'll look around and post info if I find any. But please try to stay encouraged.

Also keep us updated. I'm interested to know what Dr. Loyd has to say.

Whodathunkit, I hold out hope that this can be beaten by natural methods. I'm not sure I had this in my younger years. I had the thickest hair you could imagine. If this is lifestyle-induced, then I will just un-induce it. I'm in the process of filling out all of Dr. LLoyd's forms (which are many, and then trying to decide how I am going to saturate printer paper with saliva. I wonder if the paper chemicals have any effect on the result--I guess I will have to call him to nail this down.

Don't take just my word for it, but I remember reading that regular printing paper like you can get from Office Depot was fine for the analysis. I looked over his info pretty thoroughly a while back. Maybe rdk will weigh in if she knows.

I read that too, (after I called) and it will have to do, because I called and got a machine, left a message, but have not received a reply. I guess I will just follow directions and mail everything, although he does have a fax number.

I wonder if it would be ok to put the samples in a zip lock bag, especially if they were in with other papers. Maybe there is just no way to contaminate those samples.

I agree that keeping ph alkaline is very important, one of the best ways to do this is with vegetables juicing, when i did vegetable juicing for a week i felt very good, im talking about just drinking green juice for the week mixing more than 8 vegetables some times, around 1.8 liters a day, its not easy to keep up becose its hard to stay away of tasty bad food, but i have never felt so good, no other supplement for me was even close comparing what i felt when i was under juicing; Search for life regenerator, i think the guy name is Dan Mcdonnal, there are a lot of videos in youtube, there are a lot of nutrients in vegetables that can help with a lot od diseases and can transform your organism in an optimal level. I wish you luck.

Mexco, thanks. I have been thinking about juicing, since a lot of people swear by it. I was tested a while back and have reactions to the best veggies, ie: spinach, broccoli, onions, and garlic. Those were skin tests, but I think I am going to do kinesiology tests next since I really don't trust the skin tests. i guess when you are autoimmune the body can decide something is an invader even when it is full of vitamins. At the time of testing, I didn't know I was autoimmune, and thought that veggie allergies were a bit strange.

Do you have a favorite juice recipe? I have been reading some, and the info is that fruits are mostly acid, whereas veggies are mostly alkaline. Too bad, because fruits certainly make them taste better.

I dont trust a lot in skin tests, this is my best healing recipie : carrots, ginger, lemon, spinach, parsley, cilantro, kelp, apples, celery and beet, some days instead of beet i add a tomato or red kelp and or a herb or vegetable that i normally dont eat, ginger, lemon and apples make the juice taste good, i can feel the energy after drinking my juice for me the kick is stronger than coffe.

I felt so good while i was juicing, my anxiety improved drastically, more energy, better sleep, no sinnus, more brain power. The problem is that im weak and it was really hard to continue with the program.

Here are some pictures of my old juicer.

That recipe sounds great. Didn't think of ginger and apples for the taste. I have a Vitamix, which grinds up all of the pulp with the juice. I don't know if that is good or bad.

I just bought a book called Practical Paelo. It has a 30 day autoimmune meal plan. Check out reviews on amazon and around the web. It's very well written and should definitely help with your problem.

misty, i dont have the auto immune condition, but i experience cluster headaches during winter mainly, which we r in at the moment in aus, and i also get migraines. my migraines include auras, and loss of vision, combined with paralysis down one side, and then 30 minutes later intense pain, for which i have been hospitalised for. i use sumatriptan, which basically turns it into a raging headache for the next few days, but gets rid of the scary effects such as vision loss , numbness, and inablity to form sentences ( a bad migraine can be just like a stroke). i have reduced them by following a anti migraine trigger diet.

however i have found nothing that works fro cluster headaches, which for those who dont know is basically a burning, stabbing sensation from behind one eye.

codeine doesnt work for these, nor does aspirin, ibuprofen etc, but i have found some relief using oxycodone, but its hard to get prescribed. Ive read sumatriptan (immigran) works for cluster headaches, but it never has for me.

as for naturals, well magnesium is said to be good, but again didnt work for me, nor has any supplments ive used (which is alot).

the other thing that gives me some relief is a material that blocks emf, which i wrap around my head, but it loses effectiveness after a few hrs.

so i dont have any answers really but i feel for u,

for the autoimmune disease however id try chinese muchroom supplement.

i use a blender for juicing which just mixes all the veggies together completely.. is the juicer you have better, it seems to get rid of the "pulp"?

RisingFist,
I plan to look into that book Practical Paleo. thanks for the recommendation.
Anxious1,
My cluster headaches used to be mainly in the winter as well. During the summer a few years ago I went on a diet that required 8 glasses of water a day. At the same time, my doctor told me to take melatonin for the headaches. I followed this regimen all summer, and when the next winter came along the headaches were not nearly as severe. Trouble is, they have now extended into the summer, and here it is almost September, and I am still having them. If you go on the cluster headache forum and do a search, you will find a "water cure." One woman says her husband drinks 1 glass of water every half hour and he gets rid of his cluster headache. I think there is something to drinking water for cluster headaches, but that is a lot of water. I take something called Maxalt MLT that pretty well knocks it out, but my prescription service will only give me 9 per mo. My doctor says they are all like that, very stingy with those types of meds. I think the Maxalt is a form of sumitriptan.

I just can't imagine having migraines along with cluster headaches. Oh, another thing that tames my CH's is coffee. Or rather, caffeine. I have to have at least 3 cups in the am to get rid of the headache.

Another thing I am trying right now is inclined bed therapy. When it was mentioned here on the forum, I started researching it, and found one woman who said it had gotten rid of her cluster headaches that had plagued her for 30 years. I know it was only one mention, but cluster headaches are so rare that I thought it was worth a try. I have scoliosis, and the first few days were painful, but now no pain, and I think it is helping my back. Also, the first couple of days I think I was having a detox reaction, as I had nausea and light headedness. I know I won't know if it is helping the headaches for a long time.

Sanderson,
I have a Vitamix, it pretty much grinds everything together, even seeds.

Misty, what did you do to raise your bed? Just curious.

whodathunkit,
I used a foam wedge from this company-- http://www.mediwedge.com/ They have 4 and 6 inch sizes.