Sarcoidosis Answers for Sarcoidosis Physicians and Nurses

Sarcoidosis Answers for Physicians, Nurses and Patients

Here at SarcInfo, between 2002 and 2004, we identified the cause of Sarcoidosis, and successfully trialled a curative antimicrobial therapy. During 2005 and 2006 the US FDA designated the antibiotics Clindamycin and Minocycline as Orphan Products in the treatment of Sarcoidosis, and studies are ongoing elsewhere.

For information about this breakthrough, please post your questions at the current study-site, or the Autoimmunity Research Foundation.

This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but much of it is now out-of-date.

** Patient Tutorials **

Click here to read "WHY DID I GET SARCOIDOSIS? WHY ME?

Click here to read "REMISSION IN SARCOIDOSIS"

How a Pathologist can see Bacteria causing Sarcoidosis

"How does Doctor measure my ACE, and my D-metabolites?"

Weaning from Prednisone

Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms The SarcInfo F.A.Q.

Medical Abbreviations CBC Radio Show

Protocol Phase 1-First 3 months

** Papers for Physicians **

Antibacterial Therapy induces Remission

Implications for Autoimmune Disease
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs

Antibiotics in Sarcoidosis- The 1^st Year

Rationale for abx in Sarcoidosis

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

The NIH ACCESS Study finds Sarcoidosis does not go away - Click here to see, and print, the brochure

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Muscle Pain & Weakness

Author: Wendy Tayler (199.247.235.---)
Date: 07-22-02 12:20

Good Morning everyone,

I am posting in regards to one very specific symptom I have. I have been very active most of my life and spend alot of time hiking in the hills and mountains around my home (Whitehorse, Yukon, Canada).

I was dx with pulm sarc in 1996, went in remission shortly therafter and have just fallen ill again Jan/02.

There are many symptoms obviously and I won't go into them all here.

The one I don't understand is the muscle weakness and pain in my legs specifically and the rest of my body as well. When I go out for hikes now with my husband and children I find them extremely difficult and exhausting. My legs quiver a bit and if I am climbing hills I find the way up difficult and the way down dangerous.

I went out again Saturday in an attempt to recondition my body. We walked for 90minutes up and down a hill in the area (my 4 year old was with us!). Sunday I woke up barely able to walk and I am still very stiff today. I am barely able to walk up stairs and can't go down without support. The muscles in my thighs and calves feel hard or frozen and I have to support myself with my hands when sitting or going down steps. This has happened a couple other times when I have tried to do any incline walks of any kind over the last couple of months. Walking on level ground is tiring but does not cause muscle pain.

I would really like to know what is causing this reaction to physical activity. I have not taken steroids of any type for my illness.

I appreciate any feedback I can get.

Thanks,
Wendy Tayler

Re: Muscle Pain & Weakness

Author: Di (---.in-addr.btopenworld.com)
Date: 07-23-02 05:51

Wendy,

I think the problem may have to do with oxygenation of the muscles; the more strenuous hill walking requires more oxygen but we can't supply it due to these nasty things in our lungs, so the blood get short of oxygen and the muscles become oxygen-starved. But I'm not a medic and someone will probably tell you that's wrong. I do know that walking, even a relatively short stroll, leaves me feeling very tired. I was dx earlier this year with pulmonary sarc, and this weekend went for a country walk in the Chiltern Hills (England) for the first time in months. The result was total exhaustion to the point where I was shaking, and getting through work the next day was a struggle - I got comments from fellow workers that I was being v quiet (not like me at all). That was because just sitting at my computer was taking up all my energy.
However, I feel you should keep walking, just take it slowly and with frequent breaks - I know its a frustrating condition, I have to constantly remind myself to slow up.

Di

Re: Muscle Pain & Weakness

Author: Admin (---.vnnyca.adelphia.net)
Date: 07-23-02 06:13

Wendy,
I was thinking over what you were describing. I was interested in your description of "legs quiver".

Muscle control by the brain is a complex issue. Sarc patients frequently suffer from excruciating muscle cramps that have no obvious cause. Lack of control (palsy) and quivering of control (it won't quite do what you want) are also common.

Difficulty in control would result in more glucose and oxygen being used by the muscle, and possibly in subsequent fatigue.

I was reading a French paper last night about Facial Palsy in kids, and it seems that it is fairly common for young Tuberculosis patients to suffer from muscle palsy in France. Palsy tends to be treated as a different disorder in the US and UK, and is not reported as a 'complication'. TB is also a granulatomous disease, although the granuloma (in normals) are caseating (giant-cell insides look a bit like cheese under a microscope) and necrosis (cell death) causes them to go away with time. Nevertheless they still exude 1,25 Dihydroxyvitamin D3 while they are in their active phase. I am waiting for another paper to arrive from France that apparently blames the palsy on high concentrations of this hormone.

..Trevor..

Re: Muscle Pain & Weakness

Author: Caroline McGuirl (---.proxy.aol.com)
Date: 07-23-02 09:38

Dear Wendy:
I would love to be able to tell you WHY but I don't have the answer and every one I ask doesn't either.
I ask and am told that it is inflammation or bursitis or arthritis etc. I was diagnosed with pulmonary Sarcoidosis in Jan. 2000 but I am certain that I had Sarcoidosis for a long time before.
I shake when trying to put lipstick on or raising a glass to my lips. When I bend forward...to pick up an item...I sometimes keep falling and land on the floor myself.
The doctors when told all this just look at you and shake their heads. I was advised to have P.T. and had two series with no improvement and in fact more pain. I was just told to have yet another P.T. series and I decided....why? To get more pain??? I don't know what the doctor expects.....and I don't think she herself knows either. I have found that test after test is ordered...repeated.....and for what?
No more tests, no more P.T. for me. What is next? I don't know.
I have one more try...to have the blood work that Trevor has suggested here on the forum.....D levels, and 1,25 D Levels to be included in the next blood test.
I know this isn't going to help you one bit..but know that there are so many of us out here...questioning and wondering....and a little lost. At least we have each other.......
Caroline Mcg.

Re: Muscle Pain & Weakness

Author: Caroline (---.win.org)
Date: 07-23-02 09:48

Hi all,
I too have the muscle problems and lack of control. My left hand and arm is shaky. In the neuro test where you close your eyes and extend your arm repeatedly and bring it back to the tip of your nose, my reaching back to my nose is very shaky and I can't control it. My right arm and hand is ok.

Any exercise or use of my legs result in the back muscles of my thighs just throb and stiffen up. I take baclofen for the spasticity but sometimes it doesn't seem to help. After the muscle tightness is felt for about 1/2 hour or so, my feet begin to burn more as the tightness lessens.

Caroline

Re: Muscle Pain & Weakness

Author: judy (216.94.13.---)
Date: 07-23-02 10:41

Hi Wendy,

I am sorry I don't have an answer for you but I do know exactly how you feel. I too am (or was) very active and just thought I was getting old and out of shape, but I am only 40 (which I thought was old). I was swimming (racing) with the kids on the weekend and when I got out of the pool to do a dive I could hardly stand up. My muscles had gone to mush. I was surprised that I could still outswim my 11-year old after seeing how much sarc I have in my lungs. I guess I am lucky in that way and I will still keep hiking, swimming and whatever I can. I have also had "bone pain" and muscle cramps since a child and was always told they were growing pains. Who know? I wish there were more answers than questions.

Take Care,
Judy

Re: Muscle Pain & Weakness

Author: Admin (---.vnnyca.adelphia.net)
Date: 07-23-02 15:18

Judy,
The answer is in the third message from the top of this page. I tried to write a scholarly answer that was still easily understood. I wish I could figure out how to write stuff so you'all can understand it more easily

The answer is: these cramps and muscle control symptoms and neuropathy go away when you get the 1,25 Dihydroxyvitamin D3 metabolism under control. There are several ways to do that detailed elsewhere on this message board.

Click on this link to find out how to start doing that.

..Trevor..

Re: Muscle Pain & Weakness

Author: Wendy Tayler (199.247.235.---)
Date: 07-23-02 15:56

Thank you for all your responses. It is comforting yet infuriating that I am not the only one dealing with all these unknown symptoms. Knowing I am not alone takes away some of the fear. But wouldn't it be nice if we had a few answers....

I will be adding Trevors recommended blood test to my list for the doctor...

Take care everyone,

Wendy

Re: Muscle Pain & Weakness

Author: Linda B. (---.dsl.kscymo.swbell.net)
Date: 08-07-02 18:50

Date 08-07-02

Wendy,
My name is linda.I have had sarc.for five years now.I have it in my
lungs,liver,spleen and I have severe muscle weakness.In the beginning
I was taking 60mg of prednisone.At this present time I,m not taking any.
I do take plaquenil,but it does not help.My joints hurt also. And when the weather is rainy,it hurts more,and nothing can be done about it.I,ve found that for myself,using a heating pad or taking a hot bath really helps me.
Although I,m in pain every day I make myself get out of bed.I make myself
cook,(I have a 13-11-&8yr old)I make myself do exercises.And sometimes
I just cry.(It helps too!)I have had to be put on 02 for a while.And I,ve had
methotrexate.And I,m still waiting for remission.I miss being able to work.
I was a certified nurse asst.As my illness got worse I tried being a unit
clerk.Using the computer cause pain to shoot down my left arm.I would
be very tired and could not walk without holding on to the wall.I had to
write things down or I would forget them.When I got home I would
collaspe in to bed and fall asleep for thirty min. But it seemed like hours.
I can,t cut up my own chicken,because my muscles are so weak. I
have to make sure I have a good grip on things when I,m in the kitchen.
And it takes me longer to get dressed.There are quite a few changes
I,ve had to make.The saddest part of all this is no one knows much
about this illness,so it seems as if we are all lab rats.If you find
something that works for you please let me know.
THankyou LINDA B.

Re: Muscle Pain & Weakness

Author: Admin (---.vnnyca.adelphia.net)
Date: 08-07-02 18:59

Linda,
Well you have come to the right place. Many of your symptoms fit into the characteristic pattern of too much 1,25-dihydroxyvitamin-D. Get those three blood tests done. Click here for details what to ask your doctor. Print the details out and take it to him/her.

Then let's get this show on the road.

There will be some residual pred side effects, let's hope they are minimal, and focus on the loss of balance and fatigue. Let's hope the joint pain is just active inflammation, and that it, too, will go away.

Keep smiling,
Trevor

Re: Muscle Pain & Weakness

Author: Carolyn Depew (65.244.151.---)
Date: 02-04-03 14:16

I am so glad to have found this site. I was diagnosed with sarcoidosis in September 2001. It seems to be getting worse. I was looking for others who may suffer the same pain as me when I found this. I suffer with hoarseness, (which I have had for about three or four years and just ignored it). Now I have it in my lungs and suffer terrible fatigue and shortness of breath. I am so sore in my legs all the time even after rest. I go to bed feeling sick and I get up feeling sick. I sometimes lose my balance and stagger into walls. My feet get numb and burn. I feel like no one takes me seriously in my family. I have a lung doctor, but so far I'm not on any medication. Sometimes I just want to give it up, because I'm so sick and tired of being sick. I also have chest pain and shortness of breath and once in a while I get a choking sensation for no reason. Well this is MY pitiful tale. Oh, yes. I just turned 50 this year. Happy birthday to me.

Re: Muscle Pain & Weakness

Author: Meg (---.188.244.147.euc.wi.charter.com)
Date: 02-04-03 18:03

Hi Carolyn,

Welcome to sarcinfo. I'm glad you posted your story. It's very familiar. Many of your symptoms sound like hypervitaminosis-D and are reversible once you get your level of 1,25-D down.

Spend some time reading the information on the site. Start with the patient tutorials at the top on the left. If you have trouble with the medical terms you can use an online dictionary. Then read the starred topics and/or the topics that interest you. You can use the site search feature to find a specific topic by clicking on the word search at the top of the page. Type in a word or words and change the 30 day setting to all days so it will search all the messages.

You are actually lucky that your doctor has not given you any medications because you most likely would have been given Prednisone which might make you feel better in the short-run but will almost certainly cause serious damage to your body in the long-run. Perhaps this means that your doctor would be receptive to trying Trevor's antibiotic and ARB protocol. There are tutorials for physicians at the top of the page on the right. All this information can be printed out.

You've come to the right place. We are eager to help you get well. Let us know if you have any more questions.

Meg

Re: Muscle Pain & Weakness

Author: DJ (---.tnt1.billings.mt.da.uu.net)
Date: 02-20-03 11:52

Hi All!

I am pretty new to this forum, not sure if this is the place to post - but here goes.
I was diagnosed by bioposy a couple of weeks ago. I thought I was getting off easy with this Sarc business, but it seems I was a bit premature. Started with joint aches and shortness of breath, but after a trip to town to see the Doc. this week I am in bad, bad shape. Now have fever, chills, blotches on my legs and extreme muscle pain and fatigue. If this gets any worse I will not be able to walk at all.
I was wondering what you all do to manage the pain before the D levels come down. I was on pain killer from the hospital to help me sleep, but Doc. won't prescribe any more 'cause they are addicting. Was on Vioxx, which helped, but I started having recurrent heart palps and trouble breathing so had to discontinue that. High dose aspirin dulls the pain during the day, so I can walk a little, but doesn't help much at night. It will be two weeks before I see te Doc. again to begin ARB treatment.
Anybody have any suggestions? I am willing to eat worms if it will help!
(they don't have any vitamin D, do they? hehe)

DJ

Re: Muscle Pain & Weakness

Author: Meg (---.188.244.147.euc.wi.charter.com)
Date: 02-20-03 14:07

Hi DJ,

As a nurse, pain control is a favorite topic of mine. There have been recent initiatives to ensure adequate pain mangement for all patients and new guidelines for doctors have been extensively promoted.

Your physician should be assessing your level of pain and prescribing whatever medication is needed to help you reach your pain control goals. This may take some trial and error but it is an important aspect of practicing the art of medicine. Narcotics have to be used carefully but they are not addicting unless misused.

If your doctor doesn't believe that you have pain or doesn't want to help you relieve it, you may want to consult another. Hopefully, this will be a short interval in your course of care, as your sarcoidosis symptoms abate with proper treatment. But I feel strongly that you shouldn't have to suffer if you are having such significant pain.

Perhaps, if you asked your doctor to prescribe a short course of pain medication, he will reconsider. Remember the squeaky wheel.

Meg

Re: Muscle Pain & Weakness

Author: DJ (---.tnt3.billings.mt.da.uu.net)
Date: 02-20-03 15:41

Thanks Nurse Meg!

After thinking about it, no one at the clinic has even asked about pain. I had mentioned it to the nurse when she asked how was I feeling, but maybe it never got passed on to the Doc. At the time I was not in severe pain, I am sure that it is the aftereffect of spending 5 hrs outside going to appointments. Since I tend to tough it out and act normal, he probably doesn't believe that I could have such a big downturn so rapidly.

Took your advice and started squeaking and after 3 discussions with nurses/aids I got a call back from the Doc

He is going to try some different NSAIDs and a Tri-cyclic (?) for sleep. (Glad I didn't have to do the worm thing!)

I think I am his first sarc case, and I am not sure he is aware of the variety and extent of symptoms that can be involved. He has agreed to use Trevor's treatment protocol - I just have to be patient as he gets up to speed.

Squeak, squeak,

DJ

Re: Muscle Pain & Weakness

Author: Admin (---.vnnyca.adelphia.net)
Date: 02-20-03 16:14

DJ,
I ended up using ordinary old Valium to relax my muscles (back in the dim, dark, past before "the cure"). And the brand name Valium worked much better than the generics. I used to dissolve half a 2mg tablet under my tongue. But Doc would bever believe that 1 mg could work in a sarc patient...

Take a look at the narcotics thread. This may be the safest way for you to move forward, at least temporarily. Help Doc out by printing out the advisory that I link to in that thread.

..Trevor..

Re: Muscle Pain & Weakness

Author: Meg (---.188.244.147.euc.wi.charter.com)
Date: 02-20-03 16:43

DJ,

Good for you for squeaking, er speaking up! I hope the tri-cyclic antidepressant helps you. In my experience, it is prescribed by doctors who have a bias against stronger pain medications like narcotics. It's use in chronic pain management is considered investigational. IMO, it does not seem to be very effective.

Doctors also seem to shy away from the tried and true muscle relaxants like Valium (probably due to past abuse) but I have also found them to be very effective at low doses. If you do not get relief from these new meds, I hope you will persist. Tell the doctor what your pain is on a scale of 1-10. That should help him to evaluate it. You might also point out to him that you don't expect this pain to be chronic.

Good luck,

Meg
P.S. Like Trevor, I noticed a definite difference between brand-name Valium and generic diazepam

Re: Muscle Pain & Weakness

Author: Kathleen (65.121.96.---)
Date: 02-20-03 18:20

DJ -

My pain options are the Benicar, aspirin and the tricyclic Elavil (also to sleep). I am allergic to ALL painkillers, and most NSAIDS (thank God I can take aspirin!)

While trying to cut down on medications, I was taken off the Elavil; but I had trouble sleeping again, and increased pain. For a while, I took Xanax at night, but it really didn't help - my doc put me back on the Elavil, and off the Xanex except for cardiac discomfort, and I am sleeping much better again.

Fortunately, I do not have the pain my father and sister experienced w/sarcoid - their's was very much like yours - the blotches, the leg pains, and the fevers - they were both basically incapacitated.

Sounds like your doc is a winner! Isn't it wonderful to have someone actually PAY ATTENTION to your symptoms and illness??

Best of luck, Kathy in Wyoming

Re: Muscle Pain & Weakness

Author: Kathleen (65.121.96.---)
Date: 02-23-03 13:42

DJ -

I neglected to mention that the problem I have with sleep is very vivid dreams. I cannot always tell the difference between what has happened in reality, or in dreams - very disconcerting. I am also a night person, and tend to sleep better during the day - but this has been a problem all my life, so not a sarcoidosis related thing.

Thanks!

Kathy in Wyoming

Re: Muscle Pain & Weakness

Author: DJ (---.tnt4.billings.mt.da.uu.net)
Date: 02-24-03 17:52

Hi again all!
Just wanted to thank you for the replies. This forum is the only place that I feel understood anymore!

Trevor, I printed the narcotics links you pointed me to, I'm sure Doc. will take a look at them, or at least at the titles (hehe.) I also am going to copy the "Every patient has a right to adequate pain control" poster on his waiting room wall

Meg, using the 1-10 pain scale was a great suggestion. Mine is at the "Watch out! Dangerous woman approaching!" level. I am sure I have downplayed the extent too much - the day I called him it was almost a '9' where '10' was pain that made me pass out. After 3 days of no sun the pain has subsided some; I am able to walk and think again. I decided to give the Elavil and Celebrex a few days to work as well. Last night was my first full nights sleep in 2 months! So maybe it is working...

Thanks Kathy for sharing your pain relief recipe - I hate taking meds, and was a little scared of the Elavil. Knowing that it helped you, helped me. By the way, we are almost neighbors! I am in Montana.

Still squeaking,

DJ

Re: Muscle Pain & Weakness

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 02-24-03 18:23

DJ,

You certainly have my admiration for how well you have handled things. It's difficult in the beginning to get a handle on all the symptoms and communicate these to the medical professionals. So many of the sarcoidosis symptoms (fatigue, joint aches and muscle pain, for example) sound can like everyday occurances unless we can precisely and quantitatively describe them to our doctors. We can tend to minimize the pain unless we use the discipline of the pain scale.

You deserve an "Atta Girl!" pat on the back for your work.

Best wishes,
Belinda

Re: Muscle Pain & Weakness

Author: Lydia Thomas (---.proxy.aol.com)
Date: 04-04-03 21:44

Thanks for the above insight. I just told my husband this evening that I was going to have to take pain killers in order to be able to sleep with the pain I've been having in th evenings. Pain and twitches where I can not relax.

My 10 years with sarc has brought on a significant change in muscle strength since 1995 wherein I was still very strong, even though I am working out much harder the last three years I have become weaker and very tired.

Any further insight as to improvments with the suggested line of therapy using Miocin?

Lydia

Re: Muscle Pain & Weakness

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 04-05-03 01:49

Lydia,

While I was undergoing the evaluations leading to a definitive diagnosis, I was having episodes where I had trouble grasping or lifting things with my right hand. I would suddenly drop cups, for example, for no obvious reason.

My Minocin therapy has been ongoing for six months now, and I continue to feel improvements in the strength, sensation and circulation in my right arm and hand. My range of motion in my arm is improved, tingling and numbness resolved, and elbow, wrist and hand pain resolved (with the ARBs and Minocin), except for the temporary Jarisch-Herxheimer response.

Belinda

Re: Muscle Pain & Weakness

Author: Lydia Thomas (---.proxy.aol.com)
Date: 04-05-03 09:10

Belinda,

Thanks for the feedback. The more I read the more "classic" symptoms I realize I have ignored. Dropping things and slower reaction time have been an issue. It's good to know the treatment is giving way to improvment!

Lydia

Re: Muscle Pain & Weakness

Author: Kathleen (65.121.96.---)
Date: 04-05-03 16:39

Belinda,

Thanks again for your experience - when I feel badly, I drop things, knock things over - basically feel like a bull in a china shop! Just good to know the confirmation of others with the same experiences...

Kathy in Wyoming

Re: Muscle Pain & Weakness

Author: shelagh (---.proxy.aol.com)
Date: 04-08-03 12:25

thank goodness for the phorum - i was beginning to think i was going mad; i have had sarc for nine years and have had problems with lungs, joints, eyes, muscles over the years.

at the minute i am barely able to walk; started about a week ago with some niggling pain in my left thigh which has developed into full blown hell; not bad when i am sitting or resting, but the minute i start to walk about (or rather, try to walk about) it is awful. any weight on the leg is enough to make me cry - and i am not a crying person. been to see the gp who has given a different nsaid; last time i took nsaids i ended up in hospital with angioneurotic oedema - but ithe pain is so bad i am willing to take that risk.

what i want to ask is - these muscle 'flare-ups' - do they just go away of their own accord or are we stuck with them? i had to get the doctor out a few weeks ago because i was just stuck - couldn;t move the pain was so bad - and he gave me an injection of volterol, which was miraculous but obviously the effects didn;t last

sorry if this is a bit disjointed - i am drugged up with pain killers and don;t feel on topof things at all - but would be so grateful if someone could offer some encouragement - or something.

shelagh

Re: Muscle Pain & Weakness

Author: Meg (---.188.244.147.euc.wi.charter.com)
Date: 04-08-03 17:58

Hi Shelagh,

I'm sorry you're in so much pain? What was your last level of 1,25-D? Are you experiencing Herxheimer reaction due to antibiotic therapy?

My muscle pains went away within weeks of starting Benicar and Minocin. Let us know where you are at with Trevor's protocol.

Best wishes,

Meg

Re: Muscle Pain & Weakness

Author: evette (---.ny325.east.verizon.net)
Date: 11-04-03 09:14

HI, i was told by my pulmonologist that sarcoidosis does not cause muscle aches. i was diagnosed in sept 2003. When I had a chest x-ray for a pre-op I was fine with with no symptoms until my x-ray came back with spots the pulmonologist said i needed a biopsy. After my biopsy, i have severe muscle ache non-stop. My internal Medicine Dr did all kinds of test my ace is high it's 78 what do i do to feel normal again

Re: Muscle Pain & Weakness

Author: Admin (---.vnnyca.adelphia.net)
Date: 11-04-03 10:55

Evette,
Muscle myopathy is very common in sarcoidosis.

Anyway, welcome to SarcInfo. There are turorials at the top of each page. If you read through them they will give you information you need to cure this disease. Papers for Physicians are at the top Right of the page. You should print at least the top two for Doc to look over.

..Trevor..

Re: Muscle Pain & Weakness

Author: Frostbyte (---.bay.webtv.net)
Date: 01-09-04 20:11

{Oooh man do I ever identify with this one.

btw Hiya Meg, you referred me here and I'm loving it!

(Bloodgeon, on Talkcity, won't use that name here is it's a little... much...)

I'm just not used to feeling this weak! I used to pride myself on my strength and durability, a feeling of confidence stemmed from this.

Now it's aches, pains, weakness and lack of coordination. It only depresses me when I think about it.

Folks, all I can say is find a stress-free hobby, a mental distraction, as it's the only thing working for me right now. Any better suggestins, I'll listen too!}

"We choose the hardest lessons before we live, then wonder what we were thinking, as we try to live through it all. Maybe I don't want to build character or be stronger."

Re: Muscle Pain & Weakness

Author: Meg (---.115.74.164.euc.wi.charter.com)
Date: 01-09-04 21:24

Any better suggestions?? The Marshall protocol!

Meg

Re: Muscle Pain & Weakness

Author: Karen (---.mtnk.rnc.net.cable.rogers.com)
Date: 03-09-04 12:54

I had a terrible night, with leg pain and cramps like never before. It came out of the blue and I am presuming it is sarc inflammation. Until I get started on the MP, I am going to take the Oregano caps. I have had great success with the drops curing an arthritic finger and even cellulitis inflammation in my arm a while back.

Thanks for reminding me about the oregano - it is indeed potent stuff.

Re: Muscle Pain & Weakness

Author: Marypat (---.proxy.aol.com)
Date: 03-09-04 13:28

Belinda,

On one of the previous 2 days one of your posts [can't remember which topic] mentioned pain in your legs if touched by your husband. My legs [and sometimes arms] have been extremely sensitive to touch [or even laying on a fold on the sheets] since a huge sarc exacerbation in '88. Is this a product of CWD infiltration on the skin level? Have you become less sensitive as you follow the protocol? It would be nice to think this could be lessened!

Marypat

Re: Muscle Pain & Weakness

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 03-09-04 13:56

Marypat,

Yep, I used to have pain pretty much anywhere I was touched. It used to hurt just to lie down - in a post long ago, I talked about "the pain of lying down."

I don't have that any more, but it didn't go away by itself. It was sticking to the slow, steady course of special antibiotics and Benicar that brought me this far. That pain from lying down and most of the tenderness to touch and any pressure went away in the early months, so I would encourage you to have hope.

Belinda

Re: Muscle Pain & Weakness

Author: Marypat (---.proxy.aol.com)
Date: 03-09-04 14:37

Belinda,

I would be thrilled if the intensity of the pain would subside even a bit!

I'd been 'on' the MP about 6 weeks before having to go off it because the Dr. thought the Benicar might have something to do with dropping platelets [of course it wasn't the reason] but resumed [with the proper amount of Benicar because I had a whole month & a half prescription that I hadn't taken] the second week of February.

Yesterday my rheumatologist not only prescribed 120 mg/day of Benicar but told me I could call her when i needed the next antibiotic on the protocol! YEAH! What a sweetie!

Thanks again for all your help.

Marypat

Re: Muscle Pain & Weakness

Author: Pippit (---.asm.bellsouth.net)
Date: 03-09-04 18:18

Karen,

Where are you in the process of getting on the protocol? Essential Oils can be helpful but make sure to keep on your doctors to get you started on the antibiotics and Benicar. These meds do a very specific job that not even similar antibiotics can replicate.

Please let us know what's happening and if there are any current problems in convincing your doctors that we might be able to help with.

Pippit

Re: Muscle Pain & Weakness

Author: Pippit (---.asm.bellsouth.net)
Date: 03-09-04 18:24

Hi Marypat,

That's great to hear that your Rheumatologist is on board!

Where are you having the pain? Do you notice under what circumstances it gets better or worse? Had you been on the full dosage of Benicar over the past 6 weeks or was this just started recently when you saw your Rheumatologist.

Pippit

Re: Muscle Pain & Weakness

Author: Karen (---.mtnk.rnc.net.cable.rogers.com)
Date: 03-10-04 09:18

Hi Pippit and thanks for your concern.

At present, I have my family doctor on board, but she says she would be happier for me to go the mino route alone and only to add an ARB if my herx is bad. She is rather fearful of such high dosing of the ARB, saying that with my very naturally low BP, I could incur irreversible kidney damage. She tells me that she has had patients who have suffered this, so I can understand her fear. She also pointed out that diovan can cause sinus and bronchial infections and as I am a working lady, worries about my driving etc with all these potential side effects of the drug.

So, Monday I am having baseline bloodwork done ( including the D levels, which I feel must be pretty high) and she says I can then start on 25 mg of mino and see how I go. As it has taken my months of searching for a compliant dr, I don't want to rock the boat too much, so I think I should follow her directions and see how I fare. I think if I really need an ARB, she will allow it, but with reservations.

Re: Muscle Pain & Weakness

Author: Admin (---.vnnyca.adelphia.net)
Date: 03-10-04 09:32

Karen says:
"it has taken my months of searching for a compliant dr"

Karen, you don't yet have a Doctor who can help you to recovery.

You have one who is still comparing you with her other patients, who do not have a deadly inflammatory disease.

A perfect doctor would have called me to discuss these issues. Yours did not. For example, I could have assured her that the sinus and bronchial side-events from Diovan are not "infections" in any way at all, but inadequate operation of the diovan in those regions. A problem which is fixed by Benicar.

In fact, by denying you ARBs your Doc is risking significant organ damage from the endotoxins as you kill the bacteria.

That's not my idea of the ideal primary care physician. Sorry to be a spoilsport, but we have to be fully objective at all times. Optimism alone will not cure this disease. Folks have been trying that for over a century...

,..Trevor..

Re: Muscle Pain & Weakness

Author: Karen (---.mtnk.rnc.net.cable.rogers.com)
Date: 03-10-04 10:56

Trevor,

I suppose doctors look at the side effects of the drugs and are scared off by them. Even if you look at the side effects of mino, they can be pretty scary, I reckon - liver and kidney damage being mentioned could scare anyone off. She knows that I already have raised liver enzymes and I think she is very worried about the drugs causing further organ damage. Are the patients here who are taking the mino alone all risking significant organ damage? If that is the case, should they even be taking the drug without the Benicar in place? I know that there seem to be quite a few not taking an ARB and in the light of what you have said, they should be really worried.

I have written to an internet pharmacy to see whether I can get Benicar sent to Canada, as it certainly does seem the better option. I hope I can.

I have repeatedly asked my Dr to call you and discuss her fears. I can't understand why she won't. I see her on Monday and will try again to convince her. You have to understand that I am doing my best here, and that it has been a long, uphill struggle to get anyone to even prescribe the mino for me, let alone the ARB.

One final question - how would a sarc patient know if he/she was having a herx reaction and not experiencing side effects of the drugs, of which there do seem a fair amount?

To patients already on the MP - are you able to go about your lives - working, driving etc or is everything put on hold somewhat for a few months? I just need to know these things.....

Thanks a lot.

Re: Muscle Pain & Weakness

Author: Admin (---.vnnyca.adelphia.net)
Date: 03-10-04 11:17

Karen,
The difference between my approach and Doc's approach is that I try to understand why?. Sure, I look at the side effect lists too, but I ask, can this drug really do that? and how does it do it?

That is the reason I first made the breakthrough that Angiotensin II was a key hormone in Immune disease. Diovan was giving side effects of which it should not be capable. By understanding what was happening I was able to extend medicine's knowledge of how the immune system functions. Here is a paper we wrote in 2001 on this very subject. Only now are other investigators starting to confirm what we found.

You have to remember that medicine is an imperfect science. You are reading side effects reported by folks who did not understand what was happening. If you have a particular understanding of the issues involved, then the term "side effects" becomes meaningless, as they are actually predictable, mainline effects.

Herxheimer is one of these. All the cases of "minocycline induced lupus" are apparently only undiagnosed lupus exacerbated by the herxheimer until it became noticeable.

You must also understand that Sarcoidosis will maim you if you do not treat it. Most likely it will eventually kill you, slowly and painfully (just read the messages on some of the other internet message boards and see what this disease eventually does to folks). Now this statement is in dispute - physicians are not yet unanimous in agreement that sarcoidosis affects the heart, liver, kidneys, brain...etc.. That is why they need to pick up the phone occasionally... or seek the info on the Internet...

..Trevor..
ps: ARBs protect your organs from fibrosis and inflammation. Period. This is undisputed at this point in time amongst the researchers who know. In a decades time the info will have filtered down to your doctor. You can access it right now on Pubmed, on the Internet.

Re: Muscle Pain & Weakness

Author: Marypat (---.proxy.aol.com)
Date: 03-10-04 11:19

Pippit,

Good point! my last email was nebulous. I only just began the 'correct' amount of Benicar for the first time ever 2 days ago after I got the new precsription for 40 mg - 3x a day. Oh my, what a difference in the pain level. Much less!

[I also have about one month's worth of 40mg - 2X a day to use when I need more from the month I didn't take it while they were doing a bone marrow biopsy and an abdominal CT scan to arrive at chronic ITP, which in my opinion is due to splene involvement from sarc]

I really hope that the difference will continue.

As for where the pain was...practically everywhere. My legs and arms hyper-sensitive to any pressure [even a small fold in the sheets at night], my left eye, joints, feet, abdominal in 3 specific places, throat, kidneys...not to mention fatigue, etc.

As for when it seems better or worse, I find that it depends on where the mino seems to be working. Some days are worse than others, some better.

Anyway, thanks to all at Sarcinfo!

Marypat

Re: Muscle Pain & Weakness

Author: Karen (---.mtnk.rnc.net.cable.rogers.com)
Date: 03-10-04 12:11

Trevor,

I am convinced and there is nothing more I want than to rid my body of this awful disease and look forward to many more years in health. You have to know how frustrating all of this has been for me, so much so, that when I finally get a doctor to agree to giving me even the mino, it is a major breakthrough. I will continue to try and get the dr to at least call and talk to you. She seems sure that the ARB could cause irreversible kidney failure in me and does not want to take that responsibility, I presume. What can I say to her?

Do you know of any doctor in the Buffalo, NY area who would be prepared to prescibe Benicar to a Canadian MP patient? I am sure that many of us would happily cross the border for that.

In the meantime, do I embark on the mino alone route and risk the organ damage you have mentioned, or do I wait until I convince some doctor ( perhaps even this one) that your 'experimental' treatment ( her words, not mine), will not harm me, but rather lead me to health again?

Also, I am going on a dream cruise at the end of May. It is booked and paid for. Should I start the MP before leaving, or should I wait so that I feel OK and am not herxing and can enjoy it. Mostly, I feel fine and unlike many sarc patients, for some reason, I have plenty of energy and am able to lead the same hectic life I did before my diagnosis.

BTW, I have to tell you that rubbing oregano oil into my aching legs twice has totally got rid of any pain and I was able to go back to gym today. I know it is not a cure and is probably temporary, but it may prove helpful to the many sarc patients who need some quick relief before starting the MP or even whilst on it.

Re: Muscle Pain & Weakness

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 03-10-04 13:11

Karen,

I am very concerned about how you will protect yourself from sunlight on your "dream cruise." A cruise usually involves a lot of sun-related activities, whether on-deck or with excursions in port. There is a real risk of sarcoidosis patients ending up quite ill after sunny holidays.

Have you planned with this in mind?

Belinda

Re: Muscle Pain & Weakness

Author: Karen (---.mtnk.rnc.net.cable.rogers.com)
Date: 03-10-04 13:26

Belinda,

I am going to Alaska at the end of May. I don't think it will be particularly sunny or even warm at that time, so we will be pretty much covered up with long pants, jackets and dark glasses etc.

Also, being a natural redhead, I have always been sun wary and cautious, so there will be no lying sunbathing on deck ( or anywhere else ) for me! We are doing a train excursion and if we do go on any outdoor hikes/tours, I promise to be pretty well covered up. My friends can't understand why we are not rather going to the Caribbean, but to be honest, I have always wanted to see Alaska and I actually prefer cooler weather, sarc or not!

Thanks for your concern.

Re: Muscle Pain & Weakness

Author: Marypat (---.proxy.aol.com)
Date: 03-10-04 13:41

Karen,

I can second Belinda's opinion! We went on a Caribbean cruise Jan. 03 and it began my second worst sarc exacerbation in the last 27 years! So...even though it's Alaska keep covered and use the darkest Noir glasses possible.

Bon Voyage!
Marypat

Re: Muscle Pain & Weakness

Author: Admin (---.vnnyca.adelphia.net)
Date: 03-10-04 14:47

One thing that fascinates me about Sarcoidosis patients is that they are constantly in denial. Part of this can be laid at the door of their doctors, who have ignored the sickness since they were kids. Those symptoms that Doc labelled as "psychosomatic" have been accepted as "normal", when they were just early signs of a deadly illness. But not all of it can be blamed on Docs.

Look, I get criticized when I emphasize that a person with sarcoid granulomas is very, very ill. I get criticized when I say that this disease will kill you. So I have a suggestion. Take a look at some of the message boards where sarc folks go to offer each other emotional support. Read the sad stories which I have to read every day. Understand that in a few years time, or maybe in a few decades, you will be facing the same problems as these poor folks: blindness, heart trouble, inability to walk, 24/7 oxygen, etc...

Take a look at
Luiggie's Sarcoid Connection
Kipy's SarcoidBuddies
Dr Judson's MUSC Forum
Bill and Kerrie's Forum
The WSS Yahoo Message board

And then make an informed decision on just how long you can afford to put off facing up to this disease.

..Trevor..

Re: Muscle Pain & Weakness

Author: Meg (---.115.74.164.euc.wi.charter.com)
Date: 03-10-04 19:23

Karen,

I know you are trying your hardest to find a supportive doctor and we are 100% behind you. I'll email you some doctors names in case you need to get another opinion.

I used to live in Alaska. In the winter is is quite dark but you will still need to be very careful on your cruise. David just had this to say about the weather there now, " Also, up here in Alaska we're coming out of the darkness of 2 and a half hours of sunlight to intense snowblinding up to close to 12 hours now with twilight and this might be affecting my eyes even with the sunglasses. "

Take good care,

Meg

Re: Muscle Pain & Weakness

Author: Pippit (---.asm.bellsouth.net)
Date: 03-11-04 00:27

Karen,

Please follow through on the list of doctors Meg is giving you. Trevor and all of us moderators recommend that the Benicar be in place before starting the antibiotics. If your current doctor won't prescribe the Benicar she really is putting you at risk of the very thing she fears. Benicar actually has renoprotective properties, and I can tell you from personal experience that I've tried it both ways, and toughing it out without Benicar is really grueling and hard on your body. Your doctor could save you alot of unecessary suffering if she would just be willing try it this way.

I also had a time finding a doctor who would prescribe the recommended medications at the correct dosages, but I just had to keep asking until I found one who would agree to it. It was just that important. I did find one and it was worth it in the end. I wouldn't be without the Benicar, as I feel so much better with it.

And seriously, you do get used to the reduced blood-pressure. It usually doesn't take long to adjust. I had to get up from a lying down position slowly in the beginning but now I am back in college taking close to a full load, have an active schedule, and there are times when I need to take it every 4 hours yet have had no negative consequences.

I know you can do it. Once you get over this hurdle you will feel so much better.

Pippit

Re: Muscle Pain & Weakness

Author: Pippit (---.asm.bellsouth.net)
Date: 03-11-04 00:39

Marypat,

The pain you're describing definitely sounds like herx. How often are you taking the Benicar now? Is it Every 8 hours? It may take a week or so to reach a full blockade.

If the pain is still too much you can take it alittle closer together.

Pippit

Re: Muscle Pain & Weakness

Author: Marypat (---.proxy.aol.com)
Date: 03-11-04 04:25

Pippit,

Thanks! Now that I have the full prescription of Benicar I am taking it 40mg/8hours. [since Monday of this week] What a huge decrease in the pain!

Marypat

Re: Muscle Pain & Weakness

Author: Karen (---.mtnk.rnc.net.cable.rogers.com)
Date: 03-11-04 08:24

Thanks so much, Pippit, Trevor, Meg and Marypat.

I am more determined than ever to follow the protocol to the letter. Monday, I will go back to the doctor and even am prepared to sign a waiver if I can start the diovan at the recommended dosage ( ie 80mg 3X daily). I will again try and get the dr to call Trevor, so that he can assure her that I will not be incurring 'irreversible kidney damage' as she is so sure I will. I am trying my best to get someone to send me Benicar from the US. I will gladly pay any expenses to anyone who can send it my way.

Should I need to, I will search for yet another doctor ( this has taken almost a year already, I have just realised). I will never give up, I can assure you, as reading those boards Trevor mentioned, is just too, too sad, especially when there is a way around all those life- threatening problems.

Your encouragement and support are invaluable and I am deeply grateful to all of you for it and also to the wonderful folk who have e- mailed me their stories.

I am sure that if I can take the MP, I too will be a success story, and as promised, I will tell my story , so that others with sarc will also be able to have a bright future.

Re: Muscle Pain & Weakness

Author: bpeck (---.bluebird.ibm.com)
Date: 03-11-04 12:25

Karen:

Before you start the antibiotics, you may want to just just
magnesium odixe a try.

A very lareg number of people I know who suffered from
(Lyme and other inflammatory disease) pretty serious muscle twitching,
muscle cramping and muscle pain were releived with Magnesium.

It's importnat to try an get the most absorption out of what ever
type you buy (I use pharmaceutical grade powder).

Magnesium must not be taken with Minocyclin (or any ither from
the tetracycline family, as it binds to the drug, and less of the drug is absorbed.).

Personally - I have had TWO tpes of muscle pain in the past - one was disease related, and did not subside with the MagOX, but the twitching, quivering cramping did resolve on MagOx.

Barb

Re: Muscle Pain & Weakness

Author: Meg (---.115.74.164.euc.wi.charter.com)
Date: 03-11-04 19:42

Barb and Karen,

Magnesium needs to be used with caution because poor kidney function can prevent the mineral from being excreted. This could be dangerous, especially if the blood's concentration is already high. Since many sarcoidosis patients have undiagnosed kidney involvement, magnesium supplements should not be taken without medical supervision. As always, be sure your doctor knows about every medication you are taking, including supplements.

Meg

Re: Muscle Pain & Weakness

Author: Pippit (---.aep.bellsouth.net)
Date: 03-11-04 20:43

Marypat,

That's really good to hear that the Benicar is working.

I can't remember whether you are in England or someplace else. I had heard from Alexia that she is having trouble with the NHS in getting them to cooperate in giving her mother the protocol. If you have dealt with that system or anyone else who has had success within it, Diana, or others who live in that area, please post some suggestions to Alexia.

Keep up the good work everybody!

Maybe there will soon come a time when these struggles are a thing of the past as more barriers are broken and the community sees for themselves what a difference this makes.

Pippit

Re: Muscle Pain & Weakness

Author: Marypat (---.proxy.aol.com)
Date: 03-12-04 05:11

Pippit,

The difference between symptomology at 40 20 40 and 40 40 40 of Benicar/day is so significant that I still have a hard time believing it. I believe Trevor's 40mg 3x/day is called 'Therapeutic Dose.' [below which the medicine is ineffective] With greater herx the therapeutic dose would rise of course to 40mg 4 or more times a day.

I live in Connecticut. As my Dr. sees my life/symptoms improve on the MP, I think she [my rheumatologist] would treat other patients using the MP.

She actually began using Trevor's guidelines about sun and Vit. D with other patients soon after my second visit with her last September when I told her how greatly improved I was just adhering to the no sun, Noir glasses, and getting rid of all sources of Vit. D from my diet.

Since July she has been ordering all kinds of tests, etc. fully expecting that I had some obscure type of cancer that was causing all my problems. I think maybe the bone marrow biopsy results [negative for any Ca] and the fact that I've had NO problem at all adjusting to the Benicar - blood pressure wise - finally put her mind to rest about prescribing the correct amount.

To encourage others...I began trying to get a Dr. to listen to me last May after yet another 'heart like' episode that they could find no reason for. It has taken until this week [10 months of persevevence] to get the proper medical treatment [many visits to many different Drs.]. So keep trying!

Marypat

Re: Muscle Pain & Weakness

Author: Pippit (---.aep.bellsouth.net)
Date: 03-13-04 00:47

Marypat,

Yes, you're right, the higher dosage of Benicar does make a big difference. It's really good that your doctor is gaining the confidence in it to consider starting others on the protocol also. Experiences like yours are very helpful in showing doctors that there is no need to fear and everything to gain from prescribing the Marshall Protocol-recommended dosages.

Pippit

Re: Muscle Pain & Weakness

Author: laurie (---.modempools.net)
Date: 03-22-04 07:19

hi, I was diagnosied with sarcdosis three year ago. since then it has affected my lungs. I also feel tired and my muscles hurt all the time. the doctors I think don't understand that sometimes I am in so much pain all over. My arms feel so heavy sometime and they feel so weak. I used to to alot of things now I can go so far and then I have to stop.I have tried exercises but I am so tired.

Thanks for listening
Laurie

Re: Muscle Pain & Weakness

Author: Meg (---.115.74.164.euc.wi.charter.com)
Date: 03-22-04 13:58

Hi Laurie,

Welcome to SarcInfo. We are happy to 'listen' to your story. It's a very familiar one. I hope you will 'listen' to what we have to say here at SarcInfo. You don't have to live like this. The Marshall Protocol can put your sacoidosis into remission and relieve your symptoms. I'll send you directions on navigating the site and starting the Protocol.

Please let us know how you get along,

Meg

Re: Muscle Pain & Weakness

Author: Christina (---.wiesbaden.army.mil)
Date: 07-19-04 07:03

I went to the doctor today due to some pain in my legs from the knee downto my ankles I'm 23 years old and walk like I'm 100 I also have a bit of pain in my elbows I'm just wondering if this is a similar symptom that anyone else has or had? I'm not joking when I say I can't walk or get up from my couch. I thought that maybe it came from just having a baby but that was months ago now. my Dr said shes doing a blood test and an xray does this sound like it could be sarcoidosis? and if anyone has any advice please email me...thank u so much for any help.

Re: Muscle Pain & Weakness

Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date: 07-19-04 22:05

Hi Christina,

Welcome to SarcInfo. Yes, the symptoms you mentioned could be sarcoidosis. Women usually report a worsening of their conditions after childbirth.

Ask your doctor to test your D-metabolites and then post the results here for help with analysis. This is the only blood test that gives accurate information about systemic inflammation. I imagine the doc will be doing a chest xray and that might suggest a problem. Let us know if you don't understand the results of your testing and your symptoms continue.

Meg

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Historical perspective on Sarcoidosis:

The John's Hopkins Vasculitis Center: Prednisone Side Effects (incl. PHOTOS and PHOTOGRAPHS)
Steroid-Treated patients Have higher risk of Cardiac problems
"Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss"
"Corticosteroids contribute to the prolongation of the disease by delaying resolution"
"No data to suggest that corticosteroid therapy alters long-term disease progression"
Cochrane Review - "Oral and Inhaled Corticosteroids have no discernible effect on lung function"
Prednisone Improves Symptoms but not Lung Function in Sarcodiosis
There is no conclusive evidence that corticosteroids affect the development of irreversible pulmonary damage
Clinical Guideline For Treatment Of Arthritis Pain
Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis

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