I am Back and Need Help...Opinion about Steroids etc.

I am not sure I am posting in the correct place, but here it is...I haven't been on this site for almost 5 years and did not do the protocol, because in part I sort of felt better on my own after a very bad flare that had me bedridden for months. I attributed it to a meticulous diet and supplementsi

Some Background:

I still have autoimmune disease and 3 years ago developed MSi type symptoms on the left side of my body. ALL tests were negative for MS, but whatever was happening on my left side was progressing so quickly that the neurologist gave me a 3 day pulse of steroids and then put me on Cortef for 6 months. I got a lot better and over that year all of the MS type symptoms retreated. I still had terrible back pain and spasms though, so we did more XRays and the doc told me I really didn't have AS anymore...very strange.

Fast forward to a this past February...after months of severe back pain and nighttime fever and sweats, malaise, fatigue my dry eyes came back and my saliva completely dried up. It was suspected I had Sjogren's, but I am sero negative. I was devastated and more uncomfortable than I can explain...I couldn't eat anything without choking and was so dry that all I could do was think about it. I went to UCSF and they did a lip biopsy which was positive for Sjogren's. I found a new rheumatologist in San Fran who ordered a MRI of my sacrum. She suspected Reactive Arthritis or AS for sure (my dad had it and I have the gene). I haven't seen her about it yet, but the MRI shows total fusion of the sacrum and inflammationi.

AND...beginning in June I started having MS type symptoms again with weak left side symptoms, muscle spasms, facisulations, sensory issues. It wasn't too bad, but an annoyance so the neurologist decided I should do a 3 day pulse of Solumedrol. That happened this week, which brings me to the site again.

After the first pulse of steroids, I experienced fever and chills that night with profound fatigue. The next day I recovered but was fatigued and the same on the third, but by the end of the treatment I was beginning to have weird symptoms. That night my whole body felt like a giant parethesia and I was so weak that I couldn't walk or hold my head up. It is difficult to type this without fatigue of my hand. I am now light and sun sensitive,  have burning ears, have extreme muscle fatigue and droppiness on the left side of my face and am sweating constantly. I have constant muscle rolling as well.  I called my primary care and the neurologist and they said that the immune suppression probably provoked some kind of viral or bacterial response. SO my question is: Can massive steroids wake up Chlamydia and cause these kind of issues and if so, what to do next? My Rheumatologist gave me a prescription for doxycline at 20mg 2x per day and I may begin that now, but am worried about what is happening. The muscles in my head get fatigued when I talk!

Sorry so long...maybe someone has an idea?

 

 

1. Do you have a doctor willing to prescribe the abxi protocol?

2. Did you test positive for cpni at some point?

3. If not, have you done the NACi test?

Just tonight, I had a conversation with someone, speculating on why a person would NOT do the antibiotic program, when it's so cheap and so straightforward.  If one has cpn, or there is strong evidence they have it, why choose to gamble with your health?  Kill the bacteria, end the disease (instead of treating its ever-worsening symptoms) and get on with your life.

p.s. I'm glad this community is here, and thriving, and able to be a resource to you five years after you first found us. ;-)

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Thank you...it is so strange, but I tested positive for Cpni about 8 years ago, but recently have not. I am not sure why that is. I feel like I have a pathogen, especially because of the health decline and additional diseasesi and because I tend to get worse at certain times of the year every year! I have one doc who is convinced it is Lyme, but I do not test positive to that.  My guess is that I still have Cpn.I guess I didn't do the protocol because I was scared to. I react so strongly to drugs in general.

I take NACi on a regular basis and have for years and it always thins my mucus as it is supposed to I think.

I have a rheumatologist who wants me to take Doxyi at very low doses, which I am doing now 20-40mg per day, which I know is too low for this protocol. She is going to tell me if I have AS or Reactive Arthritis next time I go, but I think it is AS. So no...I don't have a physician who believes this. My neurologist says everyone has bugs, so won't agree to help.

As I am bedridden today and was not before the Solumedrol, I am rethinking it all and would like to get an answer, get treatment and move on as you say...what to do from here to get some relief from this right now is the question. I have severe spasms, weakness, muscle twitches, constant sweating, itching and on...

Thanks again...

Have you been in touch with Dr. Michael Powell, in Sacramento?   He treats several people who post here.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Well, I second Mac and think you should make an appointment right away with Dr. Powell. He is my doctor and he will get to the bottom of all this and fix what ails you.

You will be glad you did. He is the most knowledgeable doc on infection and inflammatory conditions on the West Coast. And he doesn't give up on his patients. And one heck of a nice and caring person. If you work the program he gives you, you will get well. Period. No Ifs, Ands or Buts!

Here is his web site:

http://www.fmtlc.com<

Lots of good reading there but get the phone numbers and call Monday. Sorry to be so blunt, but don't fool around with steroids. It's like the old song about putting out the fire with gasoline.

If you want to get well, you should go see him.

Keep us posted,

Raven

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

The dose you are taking of doxycycline is way too low to do anything: make an appointment to see Mike Powell straight away then hopefully you will start to improve: you couldn’t find a better person so don’t waste the chance .................Sarah

A Journey through Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thanks, I will call Dr. Powell.  I saw him some years back, but at that time what he was proposing was not what I could do.  I would like to get retested for Cpni and for Lyme and other viral activations and I think he will do that for me and then set up a doable protocol if I am a candidate.

I am still wondering how the steroid pulse could cause me to be so much worse than before the steroids. I spent the night sweating all my muscles are so fatigued they feel clogged. I am shaking and the sides of my head are on fire.  My muscles are twitching constantly.  Also, I feel like I can't breathe enough air in and that my muscles in my core are tightened down all the way like an MSi hug kind of thing. Weirdly enough, my joints are all stiff and painful and that is after steroids! On top of that my husband brought me outside and I am so photosensitive that I can't have any sun touch me. I feel pretty well educated a lot of time, but I am at a total loss.

My body feels like it is at war and just a few days ago all I had wrong was a weak leg...I could get out and feel more or less norma...just limp a bitl. Puts it all in perspective now that I cannot move and am in intense pain.

RE:  "I am still wondering how the steroid pulse could cause me to be so much worse than before the steroids."

If you do, in fact, have Lyme and co-infectionsi, steriods will exacerbate the symptoms and make you feel worse (they supress the immunei system.)

 

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

What to do to calm the flare then? Ideas? I realize a lot of my symptoms are mitochondrial dysfunction at this point along with other hormonal issues. I've upped my CoQ10 to 300mg. and started to take apple pectin to mop up toxins alond with hydroxytyrosol (olive leaf).

 

Any ideas are appreciated and thanks so much...so much!

I know they suppress and that is why I took them to begin with. I had a weak leg...it worked for that...just messed up the rest of me really badly. So what to do to deal with this flare...it is the most severe one I have ever had!

 

Thanks so much for replying above. It is nice to be heard...hope I am not whining too much here.

  Whatever reduces inflammationi.  I sucked down Aleve tablets  at the beginning of doing the protocol, lots of  CoQ10  (like candy)   and Vitamin C.   I became   a true believer in antioxidantsi.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Thanks, I am trying everything. So far no relief :(

So I made an appointment with Dr. Powell, but since it has been 3 years since I 've seen him I have to wait until September.  I hope that my body can make it. Today, I woke up with very little use of the left side of my body and some issues with the use of my hands in general, plus burning pain on both sides of the head...I had NO idea that the body could produce such weird symptoms...truly bizarre.

 

Thanks everyone...

It looks like your Dr is into Antibiotic Protocol (AP, Mc Pherson Brown) which could be a good start (actually open to the idea that chronic infection is behind arthritis, Mc Pherson-Brown resisted the idea of autoimmunityi for half a century, only to fail to identify the right pathogen--he died in 1989 of prostatei cancer, an illness not unlikely caused at least in part by Cpni). Perhaps your Dr can be educated, with material from this site.

If you want to prepare some disease-specific material for your Dr, consider the papers by Dr John Carter, University of South Florida. E g:

http://www.ncbi.nlm.nih.gov/pubmed/21864020<

http://www.ncbi.nlm.nih.gov/pubmed/20155838<

http://www.ncbi.nlm.nih.gov/pubmed/19404948<

The fact that you are HLA-B27 positive (as I understand it) would normally get you a quicker diagnosis (we who are neg don't escape the illnesses of the spondyloarthropathies, they just advance more slowly, and with less structural damage, a good thing, but worsening the odds to get a proper diagnosis). It does play a definite part in the fusion you've suffered, regrettably (and you didn't have the "benefit" of making your illness more obvious to your Drs).

http://www.ncbi.nlm.nih.gov/pubmed/17899306<

http://www.ncbi.nlm.nih.gov/pubmed/12634937<

For info on imaging (diagnosis) of the SpAs: spa-imaging.org

Compare that to Carter's papers (he essentially suggests that they are all the same illness, caused by chlamydiae).

As steroids suppress the immunei system, there is potential for ALL present infectionsi to excaberate, including chlamydiae.

My own joint symptoms improved greatly on the bacteriostatics (dox and rox then) in just a few weeks (they are also anti-inflammtory). Still reacting to pulses after almost two years. HLA-B27 neg, hence no signs on plain xray (and a slow disease progression somewhat fooling myself, as well). Very difficult to get Drs who understand this and  Lyme Dr (foreign, as none here) only somewhat knowledgeable of Cpn. I tested negative to chlamydiae in March 2010 and then positive in August, with no signs of acute infection in the meantime. Tests are not reliable signs of absence of chronic infection. 

There antiinflammatory alternatives that do not mess up the immune system, some of the natural ones are even anti-microbal. Try different, as different people seem to react differently. Turmeric, Silymarin, Ginger, Garlic, etc.

There is always the self-medication route ;-) Apart from it, one can do otc stuff that has some antichlamydia effect (NACi, D3, B3, herbs..).

Good luck

Borrelia/Cpni arthritis: joint, skin, eye, CNSi, respiratory, UG involvment; fatigue. Borrelia Elisa&WB IgGi, and CPn IgG and IgA pos, HLA-B27 neg. CAPi 5/9/2010 -> 3/2016 2017: some signs and symptoms returning, Borrelia?

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