Diagnosis & Medical Records/chronic Lung Problems

[Guest Medicinal Patient]

Hi, a fellow patient here....not a doctor. I have systemic chronic sarcoidosis which, among many other things, does affect my lungs. I have been on pretty much every anti inflammatory, including steroids, all the nsaids, immune suppressant drugs and tnf inhibitor drugs enrel, humaria and remicade.

 

The most evil of all was the prednisone. I can only hope you can one day taper off that. Please know that even with successful cannabis therapy, you will still have to wean slowly off the steroids, do not just stop them cold turkey.

 

I'm sure I don't have to tell you that smoking is bad for you...even cannabis. Its the process of combustion that is harmful not that cannabis just to be absolutely clear! Invest in a good vaporizer, I LOVE my volcano classic-worth every penny. I get no lung irritation at all when I vape but smoking even a joint or two can mess me up for days.

 

Know who is growing your medicine if you are unable to grow it yourself. Cannabis can be contaminated with mold and pesticides if not handled properly. I've been called a pot snob before but if you already have lung or immune issue's, you just have to be mindful!

 

Look into quality cannabis capsules which will also help with your inflammation. As to what strains, well, its the CBD's that typically help the most with inflammation. Unfortunately a lot of todays cannabis is breed with high THC and low CDB. I cant vouch for the accuracy of this website but you might find this helpful http://www.herbalelementsinc.com/products.php

 

This thread is very relevant to me and I thank you for sharing your story and offering great advice. I was just up at Spectrum United in Greenville with these types of issues that have been ongoing and sarcodosis was discussed and has been a focal point the last 5 months or so in the continued decline in health of me and my sister who share alot of the same symptoms. Could you share with us what testing was done to help you in your diagnosis? I believe this is the same illness that killed Bernie Mack at such a young age. Digital N shared with us awhile back that your health was failing. If not too personal may I ask if your health is still deteriorating and if its as a result of sarco? I would also like to take a moment to thank you for all you do in this community.

 

Cherri

[+SSP]

Hi Cherri, I am sorry to hear about the possible sarc dx for you and your sister. As I am sure you are finding out, sarc is an odd disease. Everyone calls it autoimmue but technically, there is no know antigen so its not even technically auto immune!

 

It took about 8 years of over 20 different doctors to finally get the sarc dx. It started many years ago, I was healthy, worked out almost daily and was a healthy 130 pounds at 5 foot 8. We decided to start a family and the miscarriages began. Went through the whole fertility work-up, loss 6 babies in all. Even genetic testing on the babies could not yield any answers.

 

While going through the fertility "stuff" my hands and feet started to swell. I became very fatigued and I had chronic uveities, an inflammation of the eyes. Saw a couple of docs, got the you must be depressed because of the miscarriages and the swelling must be hormones. Eye doc didn't put two and two together.

 

Eventually became too sick to even try to get pregnant. At that time, I had unspecific symptoms, intolerance to heat, excessive sweating, memory issue's, terrible fatigue, headaches, extreme swelling and joint pain-just basically felt like crap. Went from one type of doc to another.....they would find clues, such as inflammation markers in blood work, parathyroid issue's, protein in urine.....a little off reading here and there but nothing they could pin everything on.

 

This went on for years. They thought ra or some other type of inflammatory arthritis, they thought lupus, they though fibro....tried most every dmard and anti inflammatory-----steroid for over a year which caused me 80 pounds of weight gain. Than, the docs just thought I was fat and depressed!

 

Eventually, a couple of years ago, I was pretty much immobile, on a crap load of pain pills and had no productive life. I landed in the ER with 2 pulmonary embollisms (blood clots in lungs) and 3 dvts (blood clots in legs) and a prolonged qt-an electric short in my heart.

 

Spent a few days on a vent and in ICU. After another boat load of testing, get this, they send in a Priest with an Oncologist and tell my I have lymphoma and probably won't be going home, at all. I laughed and told the doctor that I KNEW I was sick! LOL I didn't care he just told me I was probably going to die, I just felt validated after so many years of not being taken seriously!

 

Than they decide, well we better do a biopsy on all that stuff we see growing in your chest. They finally did a medialstinal biopsy, where they cut the front of your throat and go in and remove tissue from the area around your lungs. These tissue samples finally showed "non ceasting granuloma's consistent with sarcoidosis."

 

Than came the hard part of finding a doc who would treat with something other than steroids. I had already been on all the dmard drugs plus enbrel, humaria, remicade, mtx and a slew of other drugs.

 

The only definitive way to dx sarc is with a biopsy. It can affect any organ, any tissue, anything in the body. Do a google search on small fiber neuropathy sarcoidosis. Small fiber neuropathy can cause some really strange symptoms and we believe this to be the cause of most of my sarc issue's.

 

Currently, I am hooked up to a heart monitor I will wear for 7 days to record the cardiac issue's I am having.

 

There is not one single drug that is FDA approve to treat sarc! I have already done everything they use off label. I do take proprananol which is a beta blocker heart medication but otherwise, I just treat with cannabis.

 

Check out this support group for sarc

http://www.inspire.com/groups/stop-sarcoidosis/

 

If you would like to talk about sarc or cannabis please feel free to email me at sarcsucks@gmail.com

[Sinsemillaplease]

Does the act say that only a special kind of chronic muscle spasm qualifies a patient? NO

 

Do several doctors in Michigan, in good standing, unimpeachable by prosecutors...

 

What?????? Herein lies your misunderstanding.

[Dr. Bob]

What?????? Herein lies your misunderstanding.

 

Doctor's opinions don't count. If the department say it is not on the list, it isn't. Sorry.

 

Dr. Bob

[Ms Chocolate]

To be technical, the law does not allow MS. It is stated that the allowance is severe and persistent muscle spasms, including those characteristic of multiple sclerosis. This allows MS and those conditions who present MS-like spasms. The spasms of MS as for the most are dysfunctions of the skeletal muscles. The skeletal muscles perform as we want them to, voluntarily. These muscles move and support the skeleton by contracting and relaxing.

 

The spasms observed with asthma are dysfunctions of the smooth muscles. Smooth muscles work involuntary to what we do. These are organ muscles that make up the walls of your lungs, bladder, arteries, and the digestive tract.

[Dr. Bob]

To be technical, the law does not allow MS. It is stated that the allowance is severe and persistent muscle spasms, including those characteristic of multiple sclerosis. This allows MS and those conditions who present MS-like spasms. The spasms of MS as for the most are dysfunctions of the skeletal muscles. The skeletal muscles perform as we want them to, voluntarily. These muscles move and support the skeleton by contracting and relaxing.

 

The spasms observed with asthma are dysfunctions of the smooth muscles. Smooth muscles work involuntary to what we do. These are organ muscles that make up the walls of your lungs, bladder, arteries, and the digestive tract.

 

correct. the issue with MS is 'spasms such as those found in MS'. my point is that I don't think asthma or IBS will fly on their own. A solid indication is needed, the only exception I generally make is several 'soft' conditions found together in the same patient. I believe I could defend that successfully.

 

dr. bob

[Dr. Bob]

Hi Cherri, I am sorry to hear about the possible sarc dx for you and your sister. As I am sure you are finding out, sarc is an odd disease. Everyone calls it autoimmue but technically, there is no know antigen so its not even technically auto immune!

 

It took about 8 years of over 20 different doctors to finally get the sarc dx. It started many years ago, I was healthy, worked out almost daily and was a healthy 130 pounds at 5 foot 8. We decided to start a family and the miscarriages began. Went through the whole fertility work-up, loss 6 babies in all. Even genetic testing on the babies could not yield any answers.

 

While going through the fertility "stuff" my hands and feet started to swell. I became very fatigued and I had chronic uveities, an inflammation of the eyes. Saw a couple of docs, got the you must be depressed because of the miscarriages and the swelling must be hormones. Eye doc didn't put two and two together.

 

Eventually became too sick to even try to get pregnant. At that time, I had unspecific symptoms, intolerance to heat, excessive sweating, memory issue's, terrible fatigue, headaches, extreme swelling and joint pain-just basically felt like crap. Went from one type of doc to another.....they would find clues, such as inflammation markers in blood work, parathyroid issue's, protein in urine.....a little off reading here and there but nothing they could pin everything on.

 

This went on for years. They thought ra or some other type of inflammatory arthritis, they thought lupus, they though fibro....tried most every dmard and anti inflammatory-----steroid for over a year which caused me 80 pounds of weight gain. Than, the docs just thought I was fat and depressed!

 

Eventually, a couple of years ago, I was pretty much immobile, on a crap load of pain pills and had no productive life. I landed in the ER with 2 pulmonary embollisms (blood clots in lungs) and 3 dvts (blood clots in legs) and a prolonged qt-an electric short in my heart.

 

Spent a few days on a vent and in ICU. After another boat load of testing, get this, they send in a Priest with an Oncologist and tell my I have lymphoma and probably won't be going home, at all. I laughed and told the doctor that I KNEW I was sick! LOL I didn't care he just told me I was probably going to die, I just felt validated after so many years of not being taken seriously!

 

Than they decide, well we better do a biopsy on all that stuff we see growing in your chest. They finally did a medialstinal biopsy, where they cut the front of your throat and go in and remove tissue from the area around your lungs. These tissue samples finally showed "non ceasting granuloma's consistent with sarcoidosis."

 

Than came the hard part of finding a doc who would treat with something other than steroids. I had already been on all the dmard drugs plus enbrel, humaria, remicade, mtx and a slew of other drugs.

 

The only definitive way to dx sarc is with a biopsy. It can affect any organ, any tissue, anything in the body. Do a google search on small fiber neuropathy sarcoidosis. Small fiber neuropathy can cause some really strange symptoms and we believe this to be the cause of most of my sarc issue's.

 

Currently, I am hooked up to a heart monitor I will wear for 7 days to record the cardiac issue's I am having.

 

There is not one single drug that is FDA approve to treat sarc! I have already done everything they use off label. I do take proprananol which is a beta blocker heart medication but otherwise, I just treat with cannabis.

 

Check out this support group for sarc

http://www.inspire.com/groups/stop-sarcoidosis/

 

If you would like to talk about sarc or cannabis please feel free to email me at sarcsucks@gmail.com

 

Sarcoid is very debilitating, I worked with many patients down in SC. Pituitary sacoid, 'potato' lymph nodes and severe arthritis were common. Folks with sarcoid easily qualify under chronic pain for the most part, and may well gain additional benefit with their other symptoms. Monitor ACE levels and we used a lot of steroids. We were fortunate to have a Sarcoid Center at the Medical University of SC. I would have all my patients go there once a year- pulmonalogy, neurology, opthalmology, rheumatology would all evaluate them (and monitor their progress) and work out a treatment plan for me for the next year.

 

Dr. Bob

[+SSP]

Hi Dr. Bob, thanks for chiming in! Please do not be offended but I am very surprised with your knowledge of sarc. Most doctors are rather clueless when it comes to my disease!

 

I have some absolutely wonderful news! The cardiologist I just saw ordered some routine blood work and everything was good. In fact my sed and c-ractive protein were both just below the normal range! Its been over 8 years since those tests have been normal.

 

The only thing I can contribute that to is cannabis! I take a rick simpsom oil in capsules every night as well as many cbd capsules during the day plus use my vaporizer daily. I have taken no steroids (other than fml eye drops) and no other anti inflammatory. I am on no DMARDs. Basically, I take proprpananol and thats it for the sarc.

 

My biggest current issue is cardiac. They just raised the proprananol from 20 to 80mg a day and that helped incredibly. However, I am still unable to walk up a flight of stairs without panting and getting dizzy. This is day 6 of a 7 day heart monitor and I have an echo scheduled soon. He wants to put a defibrillator in, I know thats pretty common with sarc patients but I am just not convinced yet.

 

Even on the 80mg of proprananol my resting heart rate runs in the 90's and its over 100 with the slightest activity. But my blood pressure is getting low from the proprananol so he doesn't want to increase that anymore as we know that will lower my blood pressure even lower.

 

So far, it seems my heart issues are electrical in nature, most likely from small fiber neuropathy from the sarc. So the only purpose of the defibrillator would be to shock my heart working again when the electrical system misfires enough to cause a terminal arrhythmia. I will wait for the results of this round of tests before making a final decision though.

 

He also said he may want to do a MRI to check for actual granuloma growth in the heart. I've had a lot of mri's and scans over the years and not keen on another. I'm sure I already glow in the dark! He said if they find granulomas in the heart, they want me on steroids which I will not do. So, I'm not sure what the point of having the mri would be? Doesn't matter where granuloma's are, the treatments are the same-all of which I "failed" from a medical standpoint. As evident by my blood work last week, my inflammation is at an all time low and my pain is relatively controlled with cannabis and just a very occasional vicodin. I feel better when I stay away from the doctors and their drugs and since there isn't any real evidence that any of the off label treatments for sarc actually change the course of the disease. And according to the FDA, thats all we have are off label drugs because there isn't one drug that is fda approved for sarc!

 

My sarc also caused a LOT of nausea. Gave myself bleeding gastris from throwing up so much. Tried all the Rx anti nausea pills and would just throw them up. I still get some bad bouts of nausea but usually a few "puffs" and its settled enough to where I dont vomit!

 

If you know of any good docs (yourself included) that would like to take on a non conventional case of sarc, please do let me know!

 

Thank you Dr. Bob for all you do for the community.