Thoughts and woes…….

[Andrea]

May I whine for a moment?

I am 41 and started Mino almost a month ago.  I found myself felling much better right away and now I am currently herxing or flareing, not sure which.  Which in turn brings back really bad memories of the bad days. 

My family (husband, daughter and I) are in the middle of purchasing a smaller home with more land in order to keep my horse at home (instead of boarding) and in hopes of getting one or two more.  My love for horses are deep.  I have to confess that I have not ridden much in about 6 months because of the pain and hope that I am not making a big mistake by purchaseing this property and then finding that I wont be able to take care of it or my hobby of horses. 

I guess what I'm looking for is some reassurance that AP is going to help me enough that I can continue enjoying the active lifestyle that I was accustomed to before all of this happened.  I was only diagnosed in September so I have not lived with it as long as some of you wonderful people.  However, it came on fast and furious.  I was unable to walk down the steps, take my clothes off and on and open anything (jars, bottles, deoderant) without assistance. 

I just hope I'm not making a terrible mistake in finally buying my dream home and not being able to enjoy it or take care of it or leave it all as a burden to my family. 

Can it/will it help me enough to enjoy being active again?

[Susan LymeRA]

gallop, gallop, gallop TO THE RESCUE gallop, gallop, gallop

(please hear The William Tell overture in the background) 

I, too, am a horse rider, and just like you, my illness came on overnight and was explosive.   That was Aug 05.  We had our horses with us and I could do nothing more than watch my husband tend to them.  Once a week, he would saddle my favorite mare (I trained her myself and boy, did it ever pay off) and I would ride her in the riding ring.

Before this illness, I was an endurance (long distance) rider competing in 50 mile events.  To be reduced to the riding ring was like telling Lance Armstrong he can only ride his bike around the high school track.

Still, my love for riding is so great, I was happy to do this much.  My hands were so bad, if she had bolted, I would have just had to ride it out.  I couldn't pull hard enough on the reins to stop her.  She never bolted and seemed to understand something was so very wrong with me.

Fast forward……..today, I ride as I please.  I still have RA, but it is very, very minor.  Yesterday, I rode and then clipped 3 horses and began clipper training on my new foal.  I cleaned stalls, groomed and last night soaked my aching feet.  I am still in the healing process.

Yes you can get better.

Have you considered lyme as the source of your illness?  As a rider, I can assure you you have most probably been infected by lyme at some point.  Research has found the lyme bacteria not only in the deer tick, but also the dog tick, mosquitos and HORSEFLIES.  It can stay dormant in you until your immune system is weakened.

Let me warn you right up front that most doctors are against lyme disease.  I am completely at a loss to explain it, but they are.  Save yourself so much time, money and heartache by seeking out the nearest ILADS LLMD (lyme literate doctor). http://www.lymenet.org is a good place to start.

LLMDs don't just focus on lyme.  They test you for a miriad of bacterias, parasites, etc. They will tell you if this is not your problem.

I have a wonderful LLMD/Rheumatologist who practices near DC.  If you are able to travel to her, e-mail me privately and I will happily give you her name. 

My doctor said “When you get this sick, it is never just one thing”.  In my case, bloodwork bears her out.  I have lyme, Babs WA-1, EBV, H. Pylori (resolved now), mycoplasmas and Chlamydia Pneumoniae.  Bad stuff and yet, I am riding, riding, riding!!!!!  The good news about so much bad stuff is that it gives me many chances to get well.  😉

Thank you Lord for that!!

Susan

[Andrea]

I my gosh and thank you so much.  I too am near DC.  I was tested for lymes.  As a matter of fact both of my horses had lymes last summer (and treated) which is when my symptoms started (hmmm).  Lymes is what I originally thought it was.  Went to the GP right away, got tested and it came back negative.   I have had so much blood drawn testing for everything, was even sent to the OB/GYN to check for STD (been married to the same guy for 17 years) and everything came back negative.  Thankfully, but still the RA factor was really not high.  It was there but not high.  The rheumatologist said it could be there because I have RA in my family history but because of my symptoms they would start the treatment of methotroxate.  Yuck!   I hated that stuff, hated the idea of it.  So, I searched and found AP. 

How long did it take you to notice a noticeable difference?

Is your lymes friendly rheumatologist also into AP?

[Susan LymeRA]

Don't pay any attention to the negative lyme test.  Those tests are notoriously faulty.  Even the CDC acknowledges the tests are inaccurate and diagnosis must be clinical.  I'm just at a loss to explain why doctors are against a lyme diagnosis

I have got to head over to feed my foal.  Her mother rejected her and we have become the surrogate mom.  LOL!

I'll pm you.  You definitely need to see my doctor.  I'm glad you found this board.  There is no doubt in my mind that infection is behind your illness.  The genetic connection is simply the reason your illness went to your joints instead of somewhere else in your body.

Genetics don't cause illness, they just determine how your body will handle disease.  RA is not a disease, it is simply the name of a disorder in which the body attacks itself.  There is a cause.  In fact, there are many different possible causes.  You just need to get to your cause and you will get better.

I would love to chat with you.

Susan

[Andrea]

I look forward to chatting with you. 

Question:  How will the treatment be different if in fact it is lymes?  Wont the mino take care of that as well?

They also said it was brought on my infection/bacteria and wrote it off to the many UTI's I had that started right before the joint stuff.  I had them pretty chronic for about a year. 

 

[Kim]

Well Susan, you just rode in on a white horse and saved the day!!!  What a wonderful and inspiring post.

May you both have lots more days enjoying your horses and going to bed with sore feet……..kim

[lynnie_sydney]

There is no doubt in my mind that infection is behind your illness.  The genetic connection is simply the reason your illness went to your joints instead of somewhere else in your body.

Genetics don't cause illness, they just determine how your body will handle disease.  RA is not a disease, it is simply the name of a disorder in which the body attacks itself.  There is a cause.  In fact, there are many different possible causes.  You just need to get to your cause and you will get better.

Wow Susan!!!! What an inspiring and illuminating post. I wish ALL newbies to this protocol would read it…… and take heart. Lynnie 

 

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)

[Susan LymeRA]

Thanks guys….blush, blush.

Actually when I saw Andrea's post, it really hit home because it could have been written by me 2 yrs ago.  I had my fair share of tears and anxiety over whether or not I would ride again.

Andrea,

Antibiotics are very bacteria specific. Drs prescribe different drugs for different bugs.  Minocin (minocycline) was used by Dr Brown for mycoplasmas.  Many rheumatologists today think it works just as an anti-inflammatory and not killing any bacteria.  Dr Brown says in his book that if you have lyme you need something stronger. 

I started on minocycline, but I was on my own with it.  My rheumatologist was very angry that I chose this over methotrexate.  He prescribed it for me at my dose request and would do nothing to oversee or monitor my progress.

I worked with a GP on holistic issues that can cause RA such as Leaky Gut and Heavy Metals and I took the minocycline 100mg MWF.  I did this for 1 yr and brought my RA from a high moderate to a weak positive.

Note the progress was irratic.  Initially it was 1 step forward and 2 back.  Slowly that reversed to 2 steps forward and 1 back.  Eventually, I was having mostly good days with an occasional bad day.  Then in May 07 (1 yr ago this weekend) I was bit again.  Within 24 hrs, flu-like symptoms.  48hrs later, high fever, chills, all joints flared and I needed help getting up from sitting, etc.  Incredible fatigue and muscle weakness.

This time I felt I needed a lyme literate doctor.  I sought out the LLMD/Rheumatologist I see now because she knew lyme and rheumatology.  She definitely does AP.  She believes RA is caused by infections.  She ran bloodtests and found the things I mentioned above.  She went after the H. Pylori first.  This bacteria resides in the gut and can cause peptic ulcers and even cancer.  Also, research has found it aggravates RA.   She gave me ammoxycillan, biaxin, plaquenil and prevacid for the H.P.  

Within 30 days, I was good as new.  Next she went after the Babesia and we continue trying to eradicate it today.  Babesia is a parasite that you get from a tickbite.  It invades your red blood cells and is considered a coinfection of Lyme.  She says until we eradicate the Babs, I will not get well.  It is very difficult to eliminate. 

She took me off minocycline because I had some Lupus symptoms.  I test negative for Lupus but mino can cause a drug induced Lupus that goes away when you stop the mino.  That is a rare side effect so do not be afraid to take mino.  She switched me to doxycyline and I continue taking it today at 100mg MWF.

I wanted to answer these questions publicly for the benefit of others who are new to this club.  But now, I will pm you.

Susan

[Maz]

[user=269]Andrea[/user] wrote:

Question:  How will the treatment be different if in fact it is lymes?  Wont the mino take care of that as well?

They also said it was brought on my infection/bacteria and wrote it off to the many UTI's I had that started right before the joint stuff.  I had them pretty chronic for about a year. 

 

Andrea, in addition to the wealth of great info Susan has already provided, your mention of recurrent UTI's may also be worth some research. As Susan said, we're not usually dealing with one pathogen, but a multitude of pathogens (our pathogen load) that's been accumulated over a lifetime. One virulent pathogen may tip the balance and trigger our disease, such as Lyme,  but, as Susan mentioned, there are often other underlying opportunistic pathogens that may also need targeting with other types of antibiotics, antiprotozoals, etc.  Dr Brown mentioned in “The New Arthritis Breakthrough” that other coinfections can stall out progress and need to be dealt with, as well…such as strep…..and in your case, whatever may also lie at the root of your UTIs.

A couple months ago, bulletin board member, DragonSlayer (aka John), shared some valuable information on an organism called “Proteus Mirabilis” – one of the causes of UTIs – which a researcher, Ebringer, has linked very clearly to RA. If you send a private message to him, he said he would very kindly share the wealth of information he has collected with anyone who asked. I haven't seen him on the board for a while, so if you don't have any response, there is much information online about Proteus Mirabilis. I just found this short study summary searching the key words, Ebringer, Ra and Proteus Mirabilis…there are many others, too:

http://www.ncbi.nlm.nih.gov/pubmed/16603443

Susan, you always share such great information! I can't remember if you've already done a testimonial for the site or if you're waiting on that for a bit…and this is only a suggestion (no pressure intended!), but if you feel like adding your story to the Personal Progress Threads at some point (I know you're busy with your new baby!), it would be such a wonderful addition and feel sure it would help many coming to visit the board to see what you have done thus far on your road to wellness.  😉  Thanks!

Peace, Maz

 

[JBJBJB]

Wow, Susan, Andrea, what a beautiful story, very inspiring and uplifting!!!

It's so encouraging to read Susan's reply. It's like a freshly brewed coffee which made my day!

Happy mother's day!!!

JB

PS- Andrea, I am also on AP since over 2 weeks ago. I am feeling the same way as you are. I am having herx now with a lot of pain in my hands, could not sleep well. I woke up last night at 2:00 AM, realizing I am kind of gambling my life with this AP treatment, wondering if this AP will work for me??? This nasty systemic scleroderma progresses so fast, I feel each day I am going down…. Yes, I feel like whining like you, too.  Pray you will get back to ride your horses!!!

[Andrea]

Thank you everyone.  I guess I'll be doing some more research.  I will get to the bottom of this.  I refuse to let it take a hold of me and bring me down at such a young age.  Thanks to Susan as well for a glimmer of hope and a light at the end of the tunnel.  I needed someone to tell me that I will be able to do the things I want to do again. 

[Michele]

What an inspiring thread!!! Thanks all!!

JBJBJB, I understand those words “taking a gamble” with my health. I think of that everyday. Those weeks after the IV were some of the hardest for me. Everyone is different, though! Some do well by the end of the IV. I've been wondering how you are doing.

I've dabbled with Mino only tolerating a low dose since the IV. I do see glacial improvements: I can walk barefoot again. My feet don't hurt so much! My elbows don't hurt. My hands are mostly better. So even though, I haven't been on antibiotics long or at a high dose, I see improvement!!!

I've whined about pain so much on this board, I just wanted to chime in here and say this does work! Now to kill all those co-infection critters that still make my ribs, spine, and knees hurt!

Andrea, there is hope here! More than in the methotrexate! I bolted from that, too!

Gallop on!!!! whinny whinny!!!

Michele

[JBJBJB]

Michele,

Thanks for asking.

I don't have any significant improvement yet. I still can yawn, but some day it makes me cough again. Prior to the IV, I could not yawn without pain and cough.

John mentioned his mood was improved. I feel like getting worse, perhaps this is because of herxing.

One scary thing I am having is I seem to have more frequent palpitation after on minocycline. I have to keep up with my breathe, if not, my heart beat is a mess, sometimes it makes me feeling very sick…. (by the way, I don't drink coffee)… I may have to call Dr. S in Iowa to figure out if this is a problem…. I don't have this problem before.

 I am on 200 mg daily. Yesterday I did not take mino. I had a day of “rest”. I made my first lemon olive oil drink Maz taught me. I feel a little better. This morning, my upper arms' muscles are herxing :headbang:

Gallop, gallop, ….. gallop

JB

 

[Andrea]

Ok, ok, what is this Lemon Olive drink I keep hearing about? and what does it do?

I was feeling pretty good myself up until Thursday.  I'm new with Mino so I was excited to have some results.  I could walk barefooted as well, I wasn't waking up quite as sore and swollen and I had more energy (although that could be the B12 shots I've been taking) which is something in itself since I didn't have enough energy to do anything for any long period of time.  Then Thursday hit (right after a yoga class) I was sore and weak everywhere, even places I had never been sore and weak in before.  I got chills, tired again, can't get warm and just ache.  I'm sure it's herxing/flareing and I hope that it will end soon.  Wish I could hurry it along a bit.   

[Maz]

[user=269]Andrea[/user] wrote:

Ok, ok, what is this Lemon Olive drink I keep hearing about? and what does it do?

… I'm sure it's herxing/flareing and I hope that it will end soon.  Wish I could hurry it along a bit.   

Hi Andrea….well, this is the purpose of the lemon/olive oil drink! It's a very gentle liver detox…and milder variation of a full liver flush. It's purpose is to help the liver work more effectively to move the toxins through the body and out. Lemons also have great antioxidant properties and are actually quite alkalizing to the body in spite of their acetic acid. The olive oil component is to get the liver and gall bladder to gently contract (any fats passing by these organs will have this effect, but olive oil is just the healthier option!).

When this detox drink is used daily, particularly before bedtime (the liver does a lot of dumping at night), it is thought to help with herx symptoms. I routinely make one every night and would miss it now! My husband has even taken to drinking them and asks for one when I'm making mine. :roll-laugh:

So easy to make:

Just take one whole lemon, scrubbed and quartered (careful to remove stickers and green ink). Throw it, skin, seeds and all into the blender. You need the pectin in the skin to emulsify the oil or it will be like a salad dressing with the oil floating to the top.

Next, add a cup (I add 12 ozs) of pure, filtered water into the blender.

Add to this, one or two tablespoons of first cold pressed olive oil (greener the better).

Blend on high till everything is well blended. Then, strain the mixture through a metal seive and throw away all the pulp, leaving just the lemon drink.

You can also add ice cubes to the mix before blending to make a kind of smoothie…some people add Stevia sweetner or honey, but some prefer the tart taste. I also add a hunk of ginger, which is nice in combo with the lemon and has great anti-inflammatory properties. If you're really brave, a clove of garlic! Garlic has anti-microbial and anti-fungal properties and is good for the gut. Must admit, though, I've done this a couple times, but it was just too garlicky tasting.

Here's a link A Friend has shared before that may interest you:

http://www.keephopealive.org/lemondrk.html

Enjoy! And, btw, love your horse's sunflower get-up! How cute is that??? I don't own horses, but have always loved them and riding. I spend a whole winter helping the owner of a local barn mucking out, feeding and turning out her 20 odd horses every day when she broke her ankle and couldn't cope…just loved it and it also paid for lessons for my daughters and I, which was a bonus! You and Susan are so blessed to have this lifestyle…not for everyone, I know…but they are such beautiful animals. 😀

Peace, Maz

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