I'm not happy with my life.

[worldofme]

I shouldn’t be punish for dum mistake in life. Last two years have been living hell for me. I don’t really know what to do. I’ve been on so many antibiotics I forgot to count and nothing seem to help.

My ReA may have gone away but whatever that was is now morph into AS. AS just sucks. Spine pain all day sucks big time. I tried everything tumeric + black pepper, Mino, Doxy, working out etc….

Nothing helps. TNF blocker are my only option at this point. I don’t want to take TNF but I need to reduce inflammation bad.

I never had spine pain in my life. I think ReA (Reactive Arthritis) turned into AS.

The ONLY TIME I AM PAIN FREE is when I AM SLEEPING. WTF.

I live in this fog all day long, brain dead.

Anyone else in this situation. All my friends are moving on with life with big jobs and houses, cars etc..Here I am in my 30ies worrying about my Spine. What 30 years worries about chronic condition.

this just sucks and why does it have to be ME.

[richie]

You have only tried so called alternative approaches –there are plenty of pain remedies available –my daughter has an electronic gadget inplanted that send signals to block pain –there are many many other pain blockers available –pain sucks but you got to suck it up and search for remedies –its there you just have to do your homework and find it —
Richie

[lynnie_sydney]

Have you taken a look at a site dedicated to AS? http://www.kickas.org?
For AS, elimination of starches from the diet seems to be as important as antibiotics to treat successfully. Take a look at John’s post (now a chapter of a book) here: https://www.roadback.org/forums/topic/ankylosing-spondylitis-9-years-in-remission/

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Spiffy]

Please consider IGG food allergy testing…such as the Cyrex Array 10 or the LEAP MRT. I never realized the importance of this until it applied to me. Please hold on! When you beat this, you will be such a help and inspiration to others.

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[Calida]

Many years ago I became familiar with the work of Dr. Elisabeth Kubler-Ross, a physician who truly understood the physical pain of her patients. The lesson I learned is that people can accept almost anything life throws at them as long as the physical pain is manageable. Without that, healing on any level cannot take place.

Before this disease attacked my body I was dealing with 9 herniated spinal discs and taking Vicodan for pain. I was lucky on two counts; one, I’m highly sensitive to meds and needed little to help with pain and two, my physician was extremely conservative when it came to prescribing pain medication. I knew she wasn’t going to increase the meds if I began to need higher doses so I was mentally preparing to live a life with chronic pain and only OTC drugs for pain relief. After 2 years of dealing with the spinal degeneration and pain my personality was changing. I was more prone to depression and everything that goes with it. It’s hard to be optimistic when you dread waking up to pain every day.

Then the real fun began when the autoimmune issues starting popping up. I probably would have been more upset at losing most of my hair if it wasn’t for the extraordinary pain of a frozen shoulder. Half a Vicodan helped with the spinal pain but 2 full pills couldn’t touch the shoulder pain. The swollen joints, muscle burning and neuropathy were almost unnoticeable because nothing compared to the shoulder and arm pain.

Fast forward to the doctor I found through Roadback. He prescribed LDN and I learned I’d have to give up the Vicodan (an opiate) in order to start the LDN. I didn’t think I could do it but I decided to give it a two week trial. At this point in the journey I was strictly allopathic, a pill for everything, and wasn’t into the whole diet and supplement thing, it was too complex, and I doubted that sort of approach would have any effect on the pain. In any event, the pain was too great to think straight so learning about alternative therapies was beyond my brain’s ability.

The LDN changed everything. Finally, after 3 years of pain 24/7 I had relief. My body was producing its own natural opiate, endorphins, and it worked better than the Vicodan. No side effects, no worries about the need for stronger pain meds or tolerance, no addiction. It gave me the breathing room to research AP and the rest is history.

Just as important as finding pain relief is understanding that you didn’t bring the disease upon yourself, you’re not being punished. As a patient advocate I was deeply involved in the lives and care of AIDS patients and I saw enough self-blame to last several life times. Those who lived long enough to have a second chance at life, thanks to the AIDS cocktail, found it easier to stop living in the past and blaming themselves for their predicament once the pain and fear were resolved. As to why it has to be you, especially at such a young age, well life is a crapshoot, no one gets out alive and bad things happen to good people. Every day. I’ve seen enough innocent children saddled with unimaginable horrors in my medical career. In fact, it seems to me that the bad guys often get away scot free and good people suffer. So let go of the guilt, it’s unwarranted, and don’t think of yourself as a victim. You have many options, you just need to bring your pain down to a manageable level so you can think clearly and move forward.

Many of us here have been where you are and understand your dilemma. A TNF blocker will help with the inflammation, and therefore the pain, but it’s a temporary measure and eventually stops working as the disease morphs once again. It doesn’t mean it’s not the right answer for you, it’s just that it sounds like it’s something you don’t want to do. If you would rather improve your quality of life and give yourself breathing room to reevaluate your treatment options, address the pain. A word of caution….stay away from the opiates or anything addictive. They’re fine short term, post-surgery and all that, but people with chronic conditions often end up addicted and there’s really no happy ending if one takes that path.

Richie suggested a great option with regard to an electronic device to manage pain. LDN works well for inflammation as it’s an immune modulator and offers the additional benefit of natural pain relief. Lynnie and Spiffy noted that dietary changes/food sensitivity testing may help to reduce the inflammation, especially in AS. Check out these options and see if they make sense in your case. If you have any questions about LDN or need to talk, send a PM and I’ll give you my number.

All the best,

Kelly

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[Spiffy]

Calida, I am tears reading your response. It is so well written from the heart. Blessings to you are well deserved. How are you feeling right now? Did you find diet helpful?

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[Spiffy]

Calida, are you still on LDN. How much? Did it give you sleep disturbances?

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[MLTelfer]

So sorry to hear this. We messaged before and you know my thoughts on this. You need to talk to your doctor and consider more aggressive treatment options. You know what I recommended. Best of luck to you.

[worldofme]

I decided to take Humira shot and it really really help with spine pain but NOTHING else. It has done nothing for my other many symptoms. There is price to pay for the shot. I feel sick, fatigue, sleepy all day etc…

I don’t really know how to go about this anymore. I do feel I have some sort of infection going on constantly causing immune mediated response.

I’ve been to so many doctors and no one is really interested in treating complex case.

[Calida]

worldofme wrote:

I’ve been to so many doctors and no one is really interested in treating complex case.

Have you tried an LLMD? Complex cases are their forté…

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[Calida]

Thank you, Spiffy. It did come from the heart. I lost a beautiful family member to pain, he was only 28. A very bad doctor was held responsible.

I’ve found certain foods trigger inflammation and eliminated them from my diet. I make everything from scratch, nothing processed, canned or boxed, and buy from Amish farmers who don’t use pesticides, GMOs or antibiotics.

Spiffy wrote:

Calida, are you still on LDN. How much? Did it give you sleep disturbances?

Yes, I wouldn’t want to do without LDN. The doctor just raised the dose to 4.5 because I had a bit of inflammation due to surgery (unrelated to the disease) but it’s too much and I’m dropping back, probably to 3.5 or less. My husband has Graves and has been in remission, perfect labs, no symptoms, for 2.5 years on 2.5mg. Less is truly more.

The sleep disturbances were minor and lasted about a week or two. During the first week, a loud noise woke me up and I was shocked to find it was my own belly laugh! After a year of nightmares, pre-LDN, it was a nice change 🙂

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[richie]

Interesting -I agree -Amish produced products are about the purest you can purchase –we spend quite some time in Lancaster area and in fact have a vacation planned for a good length of time in Berlin Oh -we even were ambitious and drove to Shipsewana area a year ago from Long Island NY —WE find a certain peace being among the Amish –good honest people !!!!!!!!!!!!!!!! Richie

[worldofme]

Can someone recommend me a good LLMD doctor in Philadelphia Area? Exton, WC?

[Maz]

worldofme wrote:

Can someone recommend me a good LLMD doctor in Philadelphia Area? Exton, WC?

Happy to PM or email the full LLMD for PA, if you’d like?

[worldofme]

yes please send it to me check your pm for my email add

[Author]

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