Why some need DMARDs/Biologics along with AP

[Susan LymeRA]

Kim,

Originally, she had me on ammoxycillan 3000mg daily, biaxin 1000mg daily.  I did that for 7 mths in 2007 and my RA symptoms dropped to zero during that time.  But the babesia numbers did not.

Next she gave me weekly IVs of an herbal concoction called MTE9.  I have forgotten now what the MTE stands for.  These IVs were painless and I continued to have zero RA during the 4 treatments received.  Afterward I got my one and only negative babesia test, but the second test was again positive.

I honestly believe these IVs were doing the job but I misunderstood how many treatments I was supposed to get.  I thought 4 was it.  She intended me to keep it up until 2 negative test results.

I had been complaining about the weekly 7 hr trips to her office and the cost ($80. per IV) and I think that is why she switched to the oral herbal parasite cleanse.  This was also to kill babesia.  Artemesia is part of the herbs as are many listed by Humaworm.  I have been on this parasite cleanse since last Oct and still getting positive Babesia tests.

Now she has started me on Mepron.  Mepron seems to be the drug of choice among the lyme doctors.  Currently I am only taking 1/4 tsp daily.  From what I read, I will be progressively increasing this dose until I am at 2 tsp daily and can expect to take this for 5 mths.  I am still on the parasite cleanse.

Relapse is common.  I have Babesia ducani (WA-1).  Is that the one you have?

Susan

[kathyo]

For Lyme, Babesia, etc., consider researching rife machines, specifically a “Doug Coil Machine.” This seems to have significantly helped many with Lyme and the co-infections, (including mycoplasmas). Many who have had abx stop working for them have utilized this treatment very effectively since the 1980's reportedly resulting in full remissions.. cures. It is yet to be FDA approved but it seems to be helping many.

Here is an online discussion group for further info.

http://health.groups.yahoo.com/group/Lyme_Rife/

Kathy

[lajones2]

I haven't been on the site for a while. But I feel like I have definitely missed out.  When and where was this conference. Is there a website for the next one. 

I am anxious to pull some worms out of my nose!:P I will start a cleanse asap.

Thanks for the info.

Love
LJ

[Maz]

[user=738]lajones2[/user] wrote:

I haven't been on the site for a while. But I feel like I have definitely missed out.  When and where was this conference. Is there a website for the next one. 

Hi LJ,

Welcome back!  😀

Here is the latest RBF eBulletin with info on the conferences recently attended:

https://www.roadback.org/emailblasts/ebulletin_winter09.html

You can subscribe to these eBulletins by going to the main RBF web page and entering your email and clicking the sign up button underneath. They come out quarterly and include the latest RBF news, recent research connected with infectious causes for rheumatic diseases and a new Remission Corner, providing updates on people who have been successfully in remission on AP for a number of years.

How are you doing? Improving any?

Peace, Maz

[lajones2]

I've been doing great on the AP! It's very slow but my mornings are not as bad as usual. Trying to get my feet and hands back. AP has become a lifestyle for me and I have no regrets and am 110% that this is slowly working.  Dr. S in Iowa told me to be patient and that is not my best traits!

How are you doing?

LJ

[Maz]

[user=738]lajones2[/user] wrote:

I've been doing great on the AP! It's very slow but my mornings are not as bad as usual. Trying to get my feet and hands back. AP has become a lifestyle for me and I have no regrets and am 110% that this is slowly working.  Dr. S in Iowa told me to be patient and that is not my best traits!

How are you doing?

 

LJ, that is such great news, as I remember you were still in some amount of pain a few months ago!!!!  Sounds like you're making the kind of progress I started to make a few months in….slow but sure and I know what you mean about patience!!! Such a challenge when it's such a back and fwd dance all the time. Those backstepping days are such a downer, but eventually they start to lessen and the good days increase.

I'm now 2.5 years in and doing pretty well…having no pain or stiffness for the majority of my days and just occasional, but quickly passing twinges here or there. I've probably got some knee damage, as my knees were so bad but I was willing to take that risk and, if needs be, will have knee replacements down the road…but I will still have my immune system intact! I'd say I'm getting pretty close to remission now with all my bloodmarkers gradually normalising over time. I'm having some more bloodwork done this week, so will share my results soon.  

Thanks for asking and keep on keeping on! You're such a trooper, LJ, as you were pretty severe and it can be hard keeping the faith through that kind of pain.

Peace, Maz

 

[lajones2]

Maz, is it not possible to build back the cartlidge in the knees. How do you know you need a replacement?

[Maz]

[user=738]lajones2[/user] wrote:

Maz, is it not possible to build back the cartlidge in the knees. How do you know you need a replacement?

Hi LJ,

Good question! At this point I'm nowhere near needing knee replacements as I am pretty painfree (unless I try to do too much at the gym!) and just get occasional clicking in my knees going downstairs. In my family, however, we have a tendancy towards osteroarthritis and my Dad and his brother are now bone-on-bone in their 80s, though my younger uncle had one knee replaced several years ago. My Dad has been resistant to having knee replacements and feels he is too old to risk surgery now, particularly with the complication of prostate cancer and type II diabetes.

I should have elaborated on what I meant (just that I'm open to knee replacements if needs be). That is, if my Dad had the knee replacements 10 years ago, his quality of life might be a lot better today, he'd be able to exercise and probably wouldn't be so concerned with diabetes. So, I'm open to the possibility that this may be in my future, too, and, if it came to it, I wouldn't wait till I was too old to risk surgery. I've sort of learned thru my Dad's unfortunate experience.  😉

AP can help osteoarthritis, too, so it's quite possible I may elude this genetic fate altogether! My fingers and toes are crossed!

As for building back cartilage, Dr Brown elaborated on this in The New Arthritis Breakthrough, pretty much confirming that when very sick rheumatic patients with longstanding disease came to him, he could bring them to remission, but that joints that were already damaged could not be reversed – that is, once cartilage is gone, it's gone. There are things one can do to strengthen existing cartilage, but reversing damage completely, where all cartilage has been lost, is virtually impossible. I don't have osteoarthritis that I know of, but I've probably got some damage in my knees simply because they were inflammed for so long – Lyme loves the knees and I had some pretty funky “grapefruits” for a long time. This inflammation has receded pretty well this past 6 months or so, but until I rebuild some muscle tissue around my knees and strengthen some of the connective tissue, I probably won't know the full extent of my knee function and whether it will revert to its pre-RA state.

In some ways, I guess I could be a good model for an AP lab rat! Although I was pretty severe throughout my first year of Lyme/RA, I chose not to take any form of immunsuppressive therapy. So, I've got to where I am now (close to remission) on antibiotic therapy and Advil alone. It's for these reasons that I've resisted repeated X-rays and MRIs, which might be seen as foolhardy…but a very personal choice, largely because I decided to accept I might get some amount of joint damage, prepared to take the risk…and I'm not looking back! I've had serious amounts of inflammation these past couple of years, but so far no joints lost or that don't have full range of motion returned now…my knees are just playing catch-up! 

Peace, Maz

[Kim]

[user=86]Susan Lyme/RA[/user] wrote:

Kim,

Originally, she had me on ammoxycillan 3000mg daily, biaxin 1000mg daily.  I did that for 7 mths in 2007 and my RA symptoms dropped to zero during that time.  But the babesia numbers did not.

Relapse is common.  I have Babesia ducani (WA-1).  Is that the one you have?

Susan,

It's always interesting to compare how these docs attack Lyme and the co-infections.

My Babs was a clinical diagnosis so I don't know what strain I have.  The tx must be hitting targets because it has brought on big-time herxing……….lots of deep chills and night sweats again, and of course, the crushing fatigue.

I didn't time this very well to overlap the Babs tx with the parasite cleanse, but there wasn't a free month in the near future so I just went for it.  There's a freaking war going on in my body right now! 😯

[Kim]

[user=27]Maz[/user] wrote:

Hi Kim,

My thoughts about ticks and worms are that it's quite possible that ticks are also passing these things (quite apart from uncooked meat or fish). They have numerous animal hosts during their two-year life span and any animals in the wild carrying these worms (in larval or egg form in their blood) can pass these on to human hosts. I always remember my Dad telling us as kids not to kiss our dogs, because we might get worms. I used to think it was a parental scare tactic, but now I'm not so sure. Being a vet, I think he just knew the things our animal friends could transmit. 

Even though I could have picked up parasites from other countries, truth is I probably got them from my own back yard.  Our house backs up to a national forest and my back garden (the tick garden, you know ;)) has been visited by foxes, coyotes, rabbits, squirrels, mice, endless parades of deer, and birds such as hawks and all that eat the small animals and leave disgusting droppings.

We just built this house so we're not going to move, and I won't stay inside, so I guess I'll be ordering more Humaworm and do it again in 6 months. 😕

Crazy…….I didn't think this would be my focus at my age!

Oh, and I think your dad offered good advice on not kissing your dogs. 🙂

[Rosey UK]

Hi Susan

how awful for you all those different bugs and micoplasmas etc.

But yes your right about hoping it's helpful to others because you've just convinced me to never go down that line with anti TNFs. I think they were making you ill with other infections like having the worst cold ever. They may stop your pain and that in itself must be fantastic and I can understand anyone wanting to do that to get some peace coz theres nothing worse than all this pain and having no life.

I hope they can kill off your bugs and then let the AP really start to do their work.

  Sorry I feel the way I do but I saw my mother with all the drugs and they never made her better. Thats why I must persavere with AP.

Good Luck!

Rosemary

 

[Susan LymeRA]

Rosemary,

You are right.  I meet so many people who only did the DMARDS and Biologics and not a one of them has improved.  I'm sure there are some who do, but I have not met them.

I'm not advocating them, but unlike Maz, I do not want any further joint damage.  I ride horses and it is my life.  I would never do the Enbrel alone, but feel my doctor has the best knowledge.  I'm staying at one shot a week for now and am painfree.  I was close to painfree before with very withstandable aches.  This move was NOT to stop pain.  It was to stop damage.   No inflammation now. Babesia symptoms are coming and going.  Mostly going and that is at just 1/4 tsp daily of Mepron.  From what I read, she will be advancing me to 2 tsp daily.

I do have fear of infections while on this stupid drug (Enbrel).

Maz,

Here is a website about a doctor in Florida who is regrowing cartilage by taking your own stemcells and injecting them into the damaged joint. I've been holding on to this site for a couple of years.  When I reach full remission, I will look into it.  It is great for osteoarthritis, but I remember reading that he requires you to be on Enbrel if you have rheumatoid arthritis.  That is because the disease will just eat the new cartilage.  Might be good for your dad though and you when you reach full remission.

http://www.iagh.com/index.html

Something to consider (my dang font changed color and I can't change it back!:X)

Susan

[Susan LymeRA]

Kim,

My doctor has me on the parasite protocol and on Mepron at the same time.  Remember Babs is a parasite.  She also has me taking 1 tbsp (in 3 tsp doses) of silver daily (ppm 18) I use Silver Shield by Nature's Sunshine and she has me on Cumanda, Burbur, Noni, Samento.  These are drops from Nutrimatrix (spelling?) I built up to 20 drops a day (10 morning, evening) of the CBN and 2 drops 2x daily of the Samento.

A really bad cold just ran through our small office and my husband has it now.  So far, I do not.  I'm getting ready to fly to Florida (Stuart) and am seriously considering wearing a mask on the plane.  I just flew to Las Vegas last week without any protection and cringed everytime anyone coughed, but I did not get sick.  Running all through our enormous hotel from meeting to meeting.  I must have run 7 miles in 3 days.  Felt great the entire time. 

Came home and was exhausted, dizzy, sinus congestion, listless, hopeless.  I think I named them all.  Some joint pain too. After 3 days of rest and no better, I e-mailed my doctor.  She took it serious and called me.  She said the Babs is causing these symptoms.  Inflammation in the inner ear causing dizziness.  Neurotransmitters out of whack causing listlessness and hopelessness. ”  She said “Bump up the Enbrel to two times a week and take Claridon for the sinuses.”  She also prescribed (it's natural) Mood Food and GABA for the neurotransmitters.   Well, I took the Claritin and everything cleared up.  (I'm pretty sure I have posted this somewhere else but no time to look now)

So, I have not bumped up the Enbrel and I have not yet received the Mood Food or the GABA.  Just food for thought for you if you get some of these same symptoms.  Claritin seems to have done the trick for me.

I'm ordering Humaworm for my hubby and I totally agree with you.  I will simply do a parasite cleanse on a regular basis.  I'm not giving up my lifestyle to this disease!

Maz, I was already trying to stop kissing my guys before you posted it.  One of those commonsense thoughts I had but I gotta tell you.  It is really, really hard.  It is such a habit for me, I find myself doing it before I think.

Let me know what you think or know about that doctor in Florida.

Susan

[Rosey UK]

Sorry Susan

I can understand why you need the enbrel, and it's awful that you have so much to put up with.

I'm quite emotional today for some reason and I thought they are just putting you on masking the symptoms instead of getting rid of the parasites, germs and bacteria. Then the AP can get to work. What a carry on! 😯

God bless!

Rosemary

[Kim]

[user=86]Susan Lyme/RA[/user] wrote:

Maz,

Here is a website about a doctor in Florida who is regrowing cartilage by taking your own stemcells and injecting them into the damaged joint. I've been holding on to this site for a couple of years.  When I reach full remission, I will look into it.  It is great for osteoarthritis, but I remember reading that he requires you to be on Enbrel if you have rheumatoid arthritis.  That is because the disease will just eat the new cartilage.  Might be good for your dad though and you when you reach full remission.

http://www.iagh.com/index.html

The orthopedic surgeon that did my knee replacement also is into regrowing your own cartilage, but when I asked him about it he politely told me it was only for younger patients……..mainly kids and athletes with injuries instead of degenerative problems.

[Author]

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