Feeling like I can see the writing on the wall.

[Spiffy]

Looking at my picture I am giving more thought to starting Plaquenil. It seems like everything about me leads to RA. If it were not so serious, it truly would be funny. I think of RA in the center of the Bullseye and all my being points toward it. No one else in my family has had it. But I guess I got the perfect mix of everything to stir the stew. Just for starters…MTHFR, DR4/DQ8, RA factor, Lyme, mold, high neutrophils, low lymphs, EBV reactivation at very high titers, food intolerances, and stress. I am the perfect storm. So for me, if I were to take away one of these, it would not matter much. I will somehow have to get around taking Methotrexate because it is a folate depleter. So I guess Plaquenil will be the first place to start and then move to biologics. Biological will get me in the end because of my immune system not handling viruses and bacteria well such as EBV. I have no way out it seems. I also need to get off the internet and quit studying everything so much. I just need to use this time I have while I have it to enjoy my family. I have learned so much my head wants to explode. Much of it is helpful if I can remember it. I have high hopes for berberine and my supplements. But I think in the end it is not going to be pretty. I have no reason to complain. With my genes, I feel nothing but thankful that I was 44 and not 16 when all this really started. I just need to accept that this is not a surprise to God and that my body is simply confused and worn down. I get so caught up in watching my RA factor, but it really is about more how you feel. There are so many with worse symptoms than me with no factor. No need for any responses. I just needed to put my thoughts down into words. I encourage you to keep trying. We don’t really have another choice.

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]

I mean, how can one person have so many arrows pointing to RA? How is it even possible? How is it possible that everyone else in my family has escaped this? It really is interesting. I have to feel it is meant to be.

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

[PhilC]

Is the minocycline dose listed in your “signature” still correct? If so, how long have you been on that dose? And were you always on that dose?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[MLTelfer]

I want to weigh in with an opinion. I understand the reservations about the drugs and biologics. The elephant in the room is arthritis, not drugs. For some reason the immune system is already out of whack. The drugs are looking for ways to restrain the hyperactivity, not just turn it “off.” I assure you of one thing: NOBODY knows where this disease comes from in all cases. NOBODY knows everything that is going on with this disease. There are no answers. There are also no answers about everything that goes on with these drugs either. So what is there to do with this dilemma? So what is worse – the disease or the drugs?

My opinion is that you need to have a clear, objective discussion with your doctor. One of the themes on this board is that many doctors are closed minded, and I am sure this is true. But that doesn’t mean I have to be closed minded. I refuse to rule anything out.
As somebody whose head is about to explode from research too, I can tell you this. My son has been on Humira since December 31, 2014. The disease is essentially in remission.

I look back at his journal on December 8, 2014:
Pain on a scale of 1 – 10
Jaw – 7 and dislocates
Entire back – 2
Hips – 7
Right wrist – 7
Fingers on right hand swollen with no pain
Left wrist – 1
Fingers on left hand swollen – no pain
Right ankle swollen – 2
Left toes swollen
Right toes swollen and pain at cuneiform
Nausea
Fatigue
Diarrhea
Brain fog

Now we did have success with AP. Humira has straightened him out for the time being and he is a normal. Imagine our lives now! He is happy and normal! So is our family!!!!!!!!!!!!!!

Talk to your doctor. There is so much hope now. Embrace the age in which we live and what is coming in our lifetimes. It is a priveledge to have these treatments available, and is a disservice to previous generations of humanity who never had a chance to do anything but suffer. Talk to your doctor and put things in perspective with your health and your outlook on this. In 14 months on Humira my son has not had so much as a sniffle. That is our experience. Please talk to your doctor and above all – I promise you there is hope!!!!!!! Better days are ahead for you – I promise!…..Mark

[jasregadoo]

My uninformed opinion is that Plaquenil is relatively safe, compared to some of the other drugs for RA. I say uninformed because I haven’t read a lot about it. I do know before starting you should get your eyes checked for a baseline with your opthomologist, as some people do have vision issues. I was on it for a little while, but I guess I’m allergic, because I broke out in a rash on my legs and my toenails turned thick and white, very strange. So I stopped taking it. I switched to Sulfasalazine, which I’m still on, in addition to minocycline. We all to have to make our own decisions for our own health, so I agree with MLTelfer about talking to your doctor. I will admit that, despite MLTelfer’s son’s wonderful experience on biologics, they still scare me. I guess everyone on this board has these thoughts at some point, or else we wouldn’t have tried AP, whether we stick with it or not. We would have gone straight to methotrexate or biologics. You do have to do what is best for you. Having said that, have you thought about varying your treatment within AP? I know on the FAQs, there are discussions of other antibiotics being used if minocycline alone doesn’t do the trick.

[Linda L]

Spiffy,
Don’t lose hope. Methotraxate and Humira are very dangerous. On 16th January this year Frey of the Eagles died due to acute ulcerative colitis. He had RA but he died because of the side effects of his medications. He couldn’t recover from the intestinal surgery /immune system destroyed/
What are your blood test results? How big is your iron, B12? Also I have a feeling that your body is full of toxins. Have you tried not to take any supplements for 2-3 days?
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

[MLTelfer]

Careful consideration is important. I do think it is extremely important to consider Frey’s lifestyle. There were a LOT of drugs and excess in play in his life, not just arthritis and arthritis medications.

[Spiffy]

I so appreciate everyone’s thoughts. Phil, my signature is current. I have been at this Mino dose since the end of August. I titrated up from 100 mgs. once a day MWF since about last March. Before that was Doxy twice a day everyday. I just started berberine. Maybe there is a small herx from that going on. I feel as though I am going to have to try holding out until I get blood work done again. I wish I knew what my neutrophils and lymphs were doing but the lab messed up. My iron levels were not considered abnormal. My iron saturation was 20 with normal being 20-55. My ferritin was 26.6 with normal being (11-306). I think that number used to be 17. He did not check b12 again, but at last check my MMA was very low which is a good sign. Linda, I should try giving up supplements, but I am scared I will go backwards. My RA factor is down to 28 (down from 71 about a year ago.) maybe I just don’t need to lose hope here. I know this, before I started more serious medications I would probably address Lyme more, but I am not sure how or if it is necessary. I just read that EBV can cause a positive Lyme test. I sure would hate to be taking unnecessary antibiotics. I would also try some anti virals as well. Yes, I have no doubt my body is absolutely full of toxins. I am taking phytosterols as a binder. I am hopeful that giving up gluten carrying a celiac gene is helping. I just wish I knew for sure what my body needed. Don’t we all. Thanks for your thoughts. MLTelfer, I am so happy for your son!

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

[Linda L]

Spiffy,
Sorry, I didn’t see your topic about your blood test results, only now. These results look quite good to me. Is your main problem pain?
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

[PhilC]

Spiffy wrote:

I just read that EBV can cause a positive Lyme test.

I am very suspicious of such claims. Do the researchers know, with a high degree of certainty, that the people weren’t also infected with Lyme Disease bacteria? To what lengths did they go to rule out Lyme Disease? Considering the current (poor) state of Lyme Disease testing, I doubt very much that they did enough to rule it out.

Also, this appears to only apply to the (nearly worthless) EIA tests:
Understanding the EIA Test

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Lynne G.SD]

Hi Spiffy;
Now knowing what Lyme is and does I would seriously consider getting it under control before you become like me.I have probably had it for over 20 years and only properly diagnosed four and a half years ago.My very good doctor who had Lyme knew right away what I had and according to her once one has long standing Lyme,one never can cure it.At best she says it can be managed as an other chronic disease just like my SD.My CD 57 shows that it is pretty well controled but it does make a reappearance every so often.What does your CD57 show?.The thing about Lyme is that it usually comes with some sort of coinfection.Does this chart say anything to you?
http://www.lyme-symptoms.com/LymeCoinfectionChart.html

[Spiffy]

Thank you PhilC. That was interesting about Elisa vs. western blot. That was good to know. The article I read said that EBV has some sort of spirochete form so it trips Lyme tests. But it did not specify which kind. Lynne, my functional med doc does not want to do a CD57 test for some reason. I have had all the bio toxin tests through my chiro. I fit in there nicely. VEGF too low, MSH too low, arginine too low, C4a levels high but c3A normal, TGF-1 high. My osmolality and ADH are fine, though. I am thinking off the top of my head. I am sure there are those I am leaving out. Some good news…my Total Immunoglobulin E has come down from 165 to 114. 114 is the last point within normal range, but I will take it. Hopefully, it is showing less of an allergy response. I am assuming laying off wheat, egg, and dairy has calmed this. It needs to go lower. Yes, my lingering symptoms are pain…right now it is my left elbow and left ankle. But they do not hurt all the time. It is more by using them. I also can feel pain in my right wrist if I use it “wrong” and sometimes right index finger, but not consistently. I can have little aches that seem to come and go most anywhere,but the elbows and ankles…especially left are the most consistent.Honestly, if someone could wipe my memory out so I knew nothing about my case, I would probably chalk it up to getting older or as a slight injury. There is really no swelling to speak of. If my pain level will stay just like this forever I could look forward to my future. The pessimist in me says I am simply between flares. I wish I could be more positive. My fatigue is much improved from last year…not perfect, still have some upper body weakness but I do not notice it so much in my daily life. Less hair loss, I think. Sleeping so much better. I am so so so much better than last year, but I sometimes let my anxiety over the possibilities dictate my feelings and actions. I still have soft tissue swelling quite easily on my forearms. I have just learned to put no pressure on them. I did notice that EBV can cause soft tissue swelling, but they may be meaning sinuses or something like that. My docs just shrug their shoulders over that one. I thought I had a nodule. But it went away in two or three days. It’s weird, but I have gotten more used to it. I do wish I had an answer or a definitive reason for my problems. Lynne, I love the Lyme chart. Oh, yes. At one time I had like 30 symptoms including loss of dexterity. I loved the chart on toxicity as well. That is so me! I am certainly glad I have tried to lead a “clean life” because my body holds on to everything I think. Tomorrow I renew my commitment to sauna. I finally learned to sweat, and if feels good. I just have to take time to do it. My phytosterols must be binding something because I did better on my visual contrast test this past time. I really appreciate your thoughts.

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]

I forgot to mention many things, I know. But one thing I should not leave out…something similar to depression. I don’t necessarily feel sad, but outside interests do not really interest me. I do not want most of my friends to know so my social calendar is next to empty. My hobby is researching all this. I feel as if I can ever figure it out…then I can move on. I am scared to exercise. My exercise tolerance is so low due to low VEGF. I am also scared my immune system will go after the joints I use. I use to rebound, but I tried it and my ankle would not let me. I guess I need to get back to walking the neighborhood when the streets are clear. I don’t know. I just miss not having the heavy burden on my shoulders all the time. But I certainly don’t want my negative thoughts keeping me from healing. I do know our mind can affect the physical. But when I try to sort of “lie” to myself, and put on the rose colored glasses…I do not feel like my body buys it. I am not depressed though. It is more of just trying to adjust to the new me. At some point I know I will be able not to let it do dictate my thought processes. Everyone seems to get there. I guess it is much like the grief process. You never get over losing that person, but you learn to manage your thoughts and actions. I think adjusting to illness is a lot the same. Again, I am so much better than I was. I should not be complaining. I just need to put on those rose glasses and smile into the future.

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

[frhorngal]

Hi Spiffy! Your story sounds a lot like mine- I’ve added Plaquenil to my regimen and bumped up my mino (I take 400mg Plaquenil and 100mg minocin (brand) daily)- This plus 1000mg Meriva (a bioavailable turmeric/curcumin supplement), NAC, vit D, and following the AIP (Autoimmune Paleo Diet) has done wonders for my RA- right around month 4, I noticed a huge change- pain/inflammation decreased, fatigue/fog lifted- am I perfect, no- am I 80% better- absolutely- Some days, esp. if I cheat on my diet (because cheese) or have too much stress, or drink too much wine ;-), I have an angry joint (or two or three) but I am working full time (HS Band Director- including Marching Band), and gigging a lot (pianist)- both of my wrist joints are fused from the RA and I have some hand deformity in the knuckles, but the pain and swelling is down and I am able to play-

I, too, had a Lyme dx- did 2.5 years of heavy antibiotics- azithromycin, clindamycin, flagyl, doxy…herbals, etc. and then took some time off to heal my gut after my infectious disease/Lyme specialist told me I had autoimmune Lyme and would have it forever…aka RA- My flare up last year was due to EBV and a kidney infection- I am afraid of mtx and the biologics because I do feel that suppressing the immune system with all of these other co-infections is risky- I think the missing piece for me now is the holistic side- I need yoga or meditation or something to help with the mind-body-stress connection. Hard to find in today’s super fast paced world- Like AP, Plaquenil is slow acting but definitely worth trying- esp. if there is a mosquito/tick borne infection triggering your infection-

RA/Lyme: 100mg Minocin (brand) MWF, 3mg LDN, 10mg CBD- BID

[Misty]

Hi frhorngal,

I had exactly the same experience of AIP diet. It felt like a mirakle! Now I have also started AP and sort of wonder if it is necessary since my symptoms seem to decrease with just the diet. I was recently diagnosed with RA and have not been on any other medication than NASIDs.

[Author]

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