Diagnosed with Polymyositis type 3, need your inputs.

[Jyoti.Umesh.Hubli]

Dear friends,
I found the roadback site and went through most articles (book is on the way). The protocol looked very promising and I did hope we are not too late to give it a try. So in order to start the AP protocol I got the tests done in last couple of weeks.

To provide a quick background my mom is suffering from muscle weakness and muscle wastage in her hands. She has reduced sense of smell from a few years, and from a couple of years has a lot of phlegm.

Her weakness in limbs started in 1994 and was diagnosed as ?polymyositis type 3 (then CPK was 338, ESR 20, and muscle biopsy revealed the diagnosis) and was recommended dexamethasone 16 mg Injections which she stopped after a couple of years since she she did not see any improvement. Then shifted to naturopathy, homeopathy and now on Ayurvedic medicines for the last 10 years. However in the due course the amount of muscle wasting in her hands and weakness is at a point where she cannot lift a glass of water in one hand. She cannot hold a spoon with thumb and forefinger. She had a series of falls from 1994, and most prominent was in 2007 where she broke 2 bones and is on wheelchair post that incident. In 2012 she has developed hip necrosis and was on fosamax weekly for an year, then biweekly and monthly which she is weaning out now.

I got the blood tests by reading the forums and articles here. Except the ANA test all other tests show normal values.I am attaching the blood test results copied from the reports in the excel sheet.Kindly let me know if I should pursue any other tests since I think she may not be suffering from Polymyositis after all and there is something else which I should pursue.

I will take these reports to her doctor too, but want to get an opinion from the forum for more insight.Your comments would be very valuable and appreciated. If not for this site I would have never known that the early diagnosis must have been a suspect and would have stayed assuming she still has Polymyositis and there is no hope.

regards,
Jyoti

This post has been moved from the Personal History section of the Board – which is a place where people can journal their progress on AP but where other users cannot reply. It is now in General Discussion where others can contribute to the thread and answer questions/share experiences. RBFV

[Maz]

@Jyoti.Umesh.Hubli wrote:

To provide a quick background my mom is suffering from muscle weakness and muscle wastage in her hands. She has reduced sense of smell from a few years, and from a couple of years has a lot of phlegm.

Lung issues can occur with any rheumatic disease and is more common in specific types, such as the mysositis sub-group who have weakened immunity and more prone to passing infections, but also due to reflux that can cause esophageal probs with swallowing and also stomach acid that makes its way into the lungs. Sleeping in an elevated position (and other things) can help to prevent this, if so. There are some great things that can be done to further support lung function by adding anti-oxidative supps and especially anything that will promote glutathione, like oral N-AC or doing regular IV glutathione pushes or asking the doc for a glutathione nebulizer to inhale. N-AC is a mucolytic agent, which helps with expectoration of lung mucous, particularly helpful for kids with cystic fibrosis or those with lung fibrosis and is sometimes also administered via IV. If you need further info on this, there is plenty online or a few of us here can let you know what has worked in our individual cases to prevent further damage or reverse disease.

http://www.aafp.org/afp/2009/0801/p265.html

Her weakness in limbs started in 1994 and was diagnosed as ?polymyositis type 3 (then CPK was 338, ESR 20, and muscle biopsy revealed the diagnosis) and was recommended dexamethasone 16 mg Injections which she stopped after a couple of years since she she did not see any improvement.

Steroidal drugs are immunosuppressive and will mask disease symptoms, but unfortunately, the disease will progress in spite of them and, over time, there are significant side-effects. It’s probably a good thing your Mum managed to get off it. People suffering from myositis-type rheumatic diseases also tend to be quite immune-suppressed already, as a part of the disease process, which is likely why they are more prone to infections and greater disease risks. Cancer screening performed regularly is very important to catch anything that may crop up and can be dealt with in the early stages. Also, many myositis patients find they can get approved for the very costly IVIG (IV immunoglobulin) treatments to help boost their immune function, though it may require an immunologic work-up to determine if your Mom is a candidate.

http://www.md-health.com/Globulin.html

http://en.wikipedia.org/wiki/Intravenous_immunoglobulin

Then shifted to naturopathy, homeopathy and now on Ayurvedic medicines for the last 10 years.

This has probably been a very good thing for your Mom and kept her going. Has she altered her diet at all? Celiac disease and gluten intolerance can overlap with some rheumatic diseases and those with low globulin levels may have undiagnosed probs with gluten. Your Mom’s levels aren’t very low, but just below range, so worth checking this out if unsure and discussing trying an elimination diet with her medical providers if this hasn’t already been done. If she also has thyroid issues, this is even more reason to look into this.

However in the due course the amount of muscle wasting in her hands and weakness is at a point where she cannot lift a glass of water in one hand. She cannot hold a spoon with thumb and forefinger. She had a series of falls from 1994, and most prominent was in 2007 where she broke 2 bones and is on wheelchair post that incident. In 2012 she has developed hip necrosis and was on fosamax weekly for an year, then biweekly and monthly which she is weaning out now.

Fosamax may have been a necessary intervention, although it’s probably a good idea to look into ways to support bone density health now she is tapering off it. Although controversial, there is some belief that in chronic illness, the body (to maintain homeostasis in pH levels) will suck out calcium from the bones to reduce ambient acidity. Taking adequate Vit D3, K2 (not if blood is too thin) and appropriate magnesium relative to calcium can help to sustain bone health. Unfortunately, avascular necrosis of the hip and osteoporosis are both potentials of long-term steroid use.

http://en.wikipedia.org/wiki/Dexamethasone#Adverse_effects

I got the blood tests by reading the forums and articles here. Except the ANA test all other tests show normal values.I am attaching the blood test results copied from the reports in the excel sheet.Kindly let me know if I should pursue any other tests since I think she may not be suffering from Polymyositis after all and there is something else which I should pursue.

Jyoti, where are you located? It might help in terms of what lab testing is available to you, but also in case we can help locate an experienced AP (antibiotic protocols) doc for your Mom. I don’t see an ANA pattern in the labs. That can help with which other rheumatic tests to pursue to look for potentials. Looks like serum ELISA levels were run for mycoplasma pneumoniae, but as her immune response may be too low for indirect antibody tests, PCR testing might prove more accurate (require being off abx for a month prior to testing by this method). Really, though, one doesn’t need to have positive titers on mycoplasma or strep to start AP. These days, it can be helpful to prove myco or other infection (there are others that can be pathogenic to humans) in order to get insurance coverage approved for IVs, but otherwise not essential to begin oral therapy. The larger issue can be finding a doc to support the therapy.

I will take these reports to her doctor too, but want to get an opinion from the forum for more insight.Your comments would be very valuable and appreciated. If not for this site I would have never known that the early diagnosis must have been a suspect and would have stayed assuming she still has Polymyositis and there is no hope.

There is an experienced AP doc who is open to consulting with local docs on the therapy and also answering patients questions via email/phone. Would you like his contact info? I’m sure he can provide help on where to begin with AP and also what further infection panels would be good to get run at this point. We’re just fellow patients here so we can only provide personal experiences and resources we’ve found helpful, so talking with an experienced AP doc could get your Mom set on a good course until she can get to an experienced AP doc or if travel is an impossibility.

Hope something here might help, Jyoti, as pointers to pursue, although you and your Mom may already be very well-versed in all this already! Welcome to the RBF forum and feel free to post any questions you might have about AP and we can all try to provide peer support, if your Mom chooses this route.

[Linda L]

Jyoti,
Has her phlegm ever been tested? Has she taken any antibiotics in order to get rid of the phlegm /infection?/?
I wouldn’t wait with one thing – purchase a gentle hand therapy putty and let her exercise with it.
Best wishes.
Linda L.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[Jyoti.Umesh.Hubli]

Thank you Maz and Linda for your responses.

>>Has she altered her diet at all? Celiac disease and gluten intolerance can overlap with some rheumatic diseases and those with low globulin levels may have undiagnosed probs with gluten.

Yes Maz, she has now moved on to gluten,sugar and diary free diet since just a month. So too early to see the benefits I guess. Every morning she has a couple of glasses of raw vegetables(cucumber, sweet potato,beetroot and 1/2 apple blended juice for breakfast. Lunch and dinner are sorgham breads (we call them roti) with slightly sauteed and boiled veggies. Also wheat-grass powder mixed with water twice a day (since 1.5 years).Besides this she has the Ayurvedic medicines I have listed them below.
No tea/coffee/soft drink.

Since ANA is positive do you think it would be wise to conduct any further tests to determine what is causing the muscle wastage and weakness ? Also she is not on any antibiotics since 2007 – just the ayurvedic meds. Do you think she would be a candidate for AP since ANA is positive? BTW I missed mentioning , she is 66 years old and no other issue like – BP or diabetes.

Also Linda, for the phlegm – what should be the test , do we just get “Routine sputum culture” done?

>>purchase a gentle hand therapy putty and let her exercise with it
She is already doing this since a couple of months with no results yet.

Yes, I would need an experienced doctor’s help as you asked. I have checked the Indian doctors who were listed on the apdoctors list, but both turned me down saying that they don’t do it anymore. Chris from the forum gave me the doctor from Ida Grove, and I did write to him on 29th may, yet to get a response. Would it be better if I just called on the times suggested Tues to Thurs between 9-11AM Central Time ?

Listing out the Ayurvedic medicines she is currently on:

Kwath(Concoction) boiled together every evening and morning
These are 3 powders one teaspoon each boiled in 1 large glass of water and reduced to 1/2:
amrut balli(creeper)
Swarvakalpa kwath
dashamool kwath

These are powders of some processed herbs mixed together. Every morning and night she takes 1/4 teaspoon of this mixture with honey.
Mixture of:
Mahavat vidwansan powder 10 gm+eakanga veer ras 5 gm+swarna makshik bhasma 5 gm+praval pista 10 gm+ rasaraja ras 1gm.

These are tablets:
Punarvadi mandoor 40gm :2 morning and evenings,
kaishore guggal 40 gm: 1 each morning and evening,
ashwagandha powder: 1/4 teaspoon – anytime of the day.

regards,
Jyoti

[Maz]

@Jyoti.Umesh.Hubli wrote:

Yes Maz, she has now moved on to gluten,sugar and diary free diet since just a month. So too early to see the benefits I guess. Every morning she has a couple of glasses of raw vegetables(cucumber, sweet potato,beetroot and 1/2 apple blended juice for breakfast. Lunch and dinner are sorgham breads (we call them roti) with slightly sauteed and boiled veggies. Also wheat-grass powder mixed with water twice a day (since 1.5 years).Besides this she has the Ayurvedic medicines I have listed them below. No tea/coffee/soft drink.

That’s great Jyoti! The only thing I’d check on in the diet you mention that I’m a little familiar with is the wheatgrass, which is said to be both immune-modulatory and immunue-enhancing. There haven’t really been any in-depth studies on how it enhances the immune system and it’s one of those unknowns as to whether it’s upregulating parts of immunity that should or shouldn’t be upregulated. Unless you have seen benefits from wheatgrass, I think it’s a bit like Echinacea…it might help, but it may worsen a condition. I am completely uneducated about Ayurvedic medicine, but perhaps someone here is knowledgeable on the other things she takes and can chime in? Re: the sorghum, I’m unfamiliar with this and just wonder if it might contain something that could irritate things…has she tried excluding it for a while to see?

http://en.wikipedia.org/wiki/Sorghum

Since ANA is positive do you think it would be wise to conduct any further tests to determine what is causing the muscle wastage and weakness ? Also she is not on any antibiotics since 2007 – just the ayurvedic meds. Do you think she would be a candidate for AP since ANA is positive?

The ANA is a first-step screening test and usually a pattern is reported – either homogenous, speckled, nucleolar, centromere. Not everyone will test positive on ANA and this can make diagnosis a little more complex, as further testing requires an astute clinician to identify signs/symptoms to run further rheumatic lab testing and detective work to determine disease type. Once the pattern is identified, if the ANA is positive, further sub-tests can be run to look for specific disease markers. Here is an explanation on http://www.labtestsonline.org

https://labtestsonline.org/understanding/analytes/ana/tab/test

Providing she has no known allergies to the antibiotics used in AP and no other contraindications, such as interactions with any meds, then they are usually well tolerated and, according to Dr. Brown, indicated in rheumatic diseases. Might help to read the book, The New Arthritis Breakthrough, by Henry Scammell, if you haven’t had a chance yet, as it will explain the rationale for using the treatment. It’s quite low dose and most people handle it very well. It’s not usual for someone without inflammation to find themselves herxing too badly, either, although there are always exceptions to every rule. Yes, a positive ANA is an indicator of some type of immune dysfunction and so AP is a very effective, long-term, slow therapy that has helped a good many who choose it and manage the treatment well.

Yes, I would need an experienced doctor’s help as you asked. I have checked the Indian doctors who were listed on the apdoctors list, but both turned me down saying that they don’t do it anymore. Chris from the forum gave me the doctor from Ida Grove, and I did write to him on 29th may, yet to get a response. Would it be better if I just called on the times suggested Tues to Thurs between 9-11AM Central Time ?

Yes, you could try calling at the designated times. This doc is so kind to answer patient and doc queries about the treatment. He is semi-retired now, so while he still sees patients who travel to see him from near and far, he also sometimes takes some time to return emails. I hope he replies soon…if not, you could try emailing again or calling.

Hope you get through, Jyoti, and very sorry to hear about the two docs in India we have listed. I’ll be sure to add notes for others in your country. We added them a few years ago when a psoriatic arthritis patient (a lawyer) asked if they’d help. One consulted with Dr. S. for this person and asked RBF about testing for mycoplasma. This patient received both orals and IV clindamycin from one of the docs and got to remission. This enabled the patient to travel to the US for further education and we lost touch as they were doing so well and, I think, they were then consulting Dr. S. directly for ongoing treatment. If you can find a local doc open to consulting with Dr. S. (when you get through to him), it would be great to have that kind of support system going for your Mom. I hope you can manage it. Can you find antibiotics over-the-counter in India without a prescription? If so, it’s possible she could start treatment that way, with Dr. S.’s input, too, although better if there is a local doc monitoring things. Let us know how you manage and best wishes to your Mom! 🙂

[BG]

Jyoti,

Has your mother been tested for Vitamin B-12 deficiency or pernicious anemia?

If not, I suggest she be tested for both. Check the serum B-12 level plus serum homocysteine and serum folate. Then, if B-12 is less that 550 and the serum homocysteine is high and the serum folate is high, follow up with specific tests for pernicious anemia.

Barb

[Linda L]

Jyoti,
Yes, a sputum test and blood test /CP?/to check if there is any bacteria.
barb,
550 in what units?
Linda L.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[BG]

Linda L.,

550 pg/ml (picograms per milliliter)

Barb

[Jyoti.Umesh.Hubli]

Thanks Maz, Barb and Linda. I have compiled a list of the next set of tests based on your inputs and from browsing, could you please suggest if any of them are redundant or if any important ones are missing.

Tests not yet done:
1. serum B-12 level plus serum homocysteine and serum folate
2. Vitamin D
3. Routine Sputum Culture

To Confirm the Presence of Muscle Disease
4. Aldolase
5. Lactate dehydrogenase levels – LDH

To Identify Etiology
6. Thyroid function tests
7. Parathyroid hormone level

To check Suspected Inflammatory Etiology
8. Myositis-specific autoantibodies

---

MSA and MAA
9. Anti

[Maz]

Jyoti, it sounds like you have a plan in mind for your Mum to narrow things down. Were you able to get a pattern on her ANA to further narrow down the testing playing field?

Also, did you hear from Dr. S. yet? If not, you could write again and pass these tests by him to see what he thinks is necessary and what isn’t.

Hope she is doing a bit better!

[Jyoti.Umesh.Hubli]

Yes Maz, thank you.I did send a mail to Dr S, waited for a couple of days. Since I did not hear back, I called and checked. He is open to answer questions but had a concern on the long distance communication. He said he will take a look at the emails.

Also the facility here does not do the below tests. The ANA profile test includes most of the other ANA related tests I had listed in my previous post.
1. Myositis-specific autoantibodies

---

MSA and MAA
2. Coenzyme Q10 levels
3. Anti-PM1 antibody

Another thought is even if we are not able to narrow down to the name of her condition accurately , would starting the AP protocol hurt? May-be I should get started now that we have wasted so much time already? What do you think?

regards,
Jyoti

[Maz]

@Jyoti.Umesh.Hubli wrote:

Yes Maz, thank you.I did send a mail to Dr S, waited for a couple of days. Since I did not hear back, I called and checked. He is open to answer questions but had a concern on the long distance communication. He said he will take a look at the emails.

He’s a gem, that guy. I’ve been sending him loads of people lately, so he might be a bit backed up. Am sure he’ll do his best to get back when he can get to his emails.

Also the facility here does not do the below tests. The ANA profile test includes most of the other ANA related tests I had listed in my previous post.
1. Myositis-specific autoantibodies

---

MSA and MAA
2. Coenzyme Q10 levels
3. Anti-PM1 antibody

Jyoti, it’s a shame if the lab you use doesn’t provide a pattern on your Mum’s positive ANA test as that would provide more of an idea of which other tests to run, especially as you’re questioning diagnosis. Do you have a local rheumatologist you could visit…maybe at a local hospital? I think it might save time and money to get a thorough work-up done to see if things can be narrowed down further. Otherwise it’s a bit like stabbing around in the dark, running all kinds of tests that might not be necessary.

Another thought is even if we are not able to narrow down to the name of her condition accurately , would starting the AP protocol hurt? May-be I should get started now that we have wasted so much time already? What do you think?

Well, I’m just a patient and I had been thinking she’d already started it, as you said she was feeling a little better. There should be no contraindications for starting the treatment unless she’s taking anything that might interact with tetracyclines, or has an allergy or other health issue that would preclude her from using this class of abx. It’s an abx that’s pretty well tolerated by most and is due to its relative benign nature, is prescribed to teens for acne. As she’s doing a lot of traditional Indian meds, it’s hard to know what might interact or not. If it was me, I’d probably do a complete washout of anything I was using for a week (with the exception of necessary prescriptions for other things, e.g., PPIs for reflux, heart and/or thyroid meds, pred or other immune-suppressants that might need to be tapered carefully later when optimal dosing is reached and any herxing has settled) and then I’d start AP low and slow as per the Historical Protocol on the main site. This way, it would be easier to note herxing and what is causing what. Probiotics are essential on the treatment, spaced well away from abx doses by a couple hours and same for any supps or foods heavy in minerals (minerals, like calcium, magnesium, iron, etc. will bind to tetras and render the abx useless in the gut). Tetras must be taken with a full glass of water and it’s a good idea to remain upright for a good couple hours, especially if reflux is a problem.

It’s probably a good idea to read up on drugs.com and other sites about the nature of minocycline and to become aware of known drug interactions and health contraindications before diving in, especially as you are deciding to mostly “self-manage” things. Also, be aware that different generics or brand names may be better than others, so it might take a while to settle on one that works well. The one that is preferred here in the US is a pelleted capsule produced by Wyeth and is called, “Minocin.” However, not sure what might be available there. You might want to start a new thread or search the archives for past threads on Indian brands. Some folks do well on Ranbaxy here, but there was a problem with quality control a while back.

Can only really share what I’d do in the same spot, Jyoti, but hoping Dr. S. will have good insight for you soon on tests and dosing she might need.

[BG]

Jyoti,

Have the physicians talked to you about the specifics of Polymyositis Type 3? I ask this because it appears to be associated with malignancy which would require a very different kind of treatment: http://emedicine.medscape.com/article/335925-overview

Barb

[Maz]

Hi B G,

You’re already very informed and an excellent researcher so no need to go into specifics, but worth reading how minocycline acts to inhibit various cancer (study below addresses this topic) both alone and in conjunction with various conventional treatments for cancers. Anyone with a myosotis type rheumatic disease should be informed by their doctors about the increased risks of cancers with this sub-set of rheumatic diseases, although all inflammatory diseases and anything disruptive to healthy immune function carries a higher burden of risk for cancers. Polymyositis and dermatomyosiris patients should be going for more regular cancer screenings, for sure.

http://www.researchgate.net/publication/235738717_Minocycline_Far_beyond_an_antibiotic

[A Friend]

@Jyoti.Umesh.Hubli wrote:

Dear friends,
I found the roadback site and went through most articles (book is on the way). The protocol looked very promising and I did hope we are not too late to give it a try. So in order to start the AP protocol I got the tests done in last couple of weeks.

To provide a quick background my mom is suffering from muscle weakness and muscle wastage in her hands. She has reduced sense of smell from a few years, and from a couple of years has a lot of phlegm.

Her weakness in limbs started in 1994 and was diagnosed as ?polymyositis type 3 (then CPK was 338, ESR 20, and muscle biopsy revealed the diagnosis) and was recommended dexamethasone 16 mg Injections which she stopped after a couple of years since she she did not see any improvement. Then shifted to naturopathy, homeopathy and now on Ayurvedic medicines for the last 10 years. However in the due course the amount of muscle wasting in her hands and weakness is at a point where she cannot lift a glass of water in one hand. She cannot hold a spoon with thumb and forefinger. She had a series of falls from 1994, and most prominent was in 2007 where she broke 2 bones and is on wheelchair post that incident. In 2012 she has developed hip necrosis and was on fosamax weekly for an year, then biweekly and monthly which she is weaning out now.

I got the blood tests by reading the forums and articles here. Except the ANA test all other tests show normal values.I am attaching the blood test results copied from the reports in the excel sheet.Kindly let me know if I should pursue any other tests since I think she may not be suffering from Polymyositis after all and there is something else which I should pursue.

I will take these reports to her doctor too, but want to get an opinion from the forum for more insight.Your comments would be very valuable and appreciated. If not for this site I would have never known that the early diagnosis must have been a suspect and would have stayed assuming she still has Polymyositis and there is no hope.

regards,
Jyoti

This post has been moved from the Personal History section of the Board – which is a place where people can journal their progress on AP but where other users cannot reply. It is now in General Discussion where others can contribute to the thread and answer questions/share experiences. RBFV

Hello Jyoti,
I’ve been a regular poster here for a number of years, but more recent family problems have kept me away. Missing RBF this am, I took a look at what was going on… and saw your post.

Regardless of what is going on in our health, I learned a number of years ago that the vast majority of doctors do not educate us about (or seem to educate themselves about) the body’s great need for pH balance in the body to keep us healthy. Once I learned this, became aware of my pH type, and the level of my own body pH, I began addressing this. When we are overly acidic longterm, it can wreak havoc on everything… including our bones, bone pain, and can lead to cancer and much more.

If you are interested in this subject, this is a link I was impressed with quite a while ago, and same information in it was the reason I was able to turn around the acidosis/bone pain. It kept me as healthy as it could… in spite of my not knowing my longterm illness was actually being caused/fueled by then unknown dental cavitations, which was certainly adding to the acidity of my body. But learning I was Blood Type A (I learned this years [ago] when expecting my first child) many years later would actually help educate me about best food choices, etc., for my pH type, and how to daily test my pH numbers (so I would know whether I was making progress or needed more acid buffers in my diet or not). One of the first things I remember when I read about pH and acidosis was that when my physician said he didn’t think my pain was being caused by my pH, but if it was, drinking 1/2 teaspoon of baking soda dissolved in small glass of water, every waking hour for two days, would make the pain decrease — BUT, he said, he did not think that was my problem. After two days of drinking the soda/water drink, the pain had greatly decreased, except for some deep bone pain. On my own, I drank this a 3rd day, and fascia and bone pain had both gone. So, I knew I needed to study and follow an alkaline diet closely. (The article link I’m pasting discusses acidosis, bone damage,and related information.)

Hope this link will be of help. If you do a search in the little search window atop the posts on the first page of the Bulletin
Board, there are probably many posts that will be found on acidosis, bone pain, etc. Good luck to you and to your mom.

http://www.shapefit.com/body-acidity-problems.html
Body Acidity – Problems Caused When Your Body is Too Acidic

Prayers for you and your Mom,
AF

[Author]

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