Questions

[Velouria138]

[Kim]

Hi Velouria,

Wow, feeling better after one month of Lyme tx, that's great.

You can use the “search” for previous discussions on nodules.  Some on the board have had good improvement.

Depression.  I haven't heard of a single Lymie that hasn't experienced depression, and it's mentioned in just about everything you read.  For me, it lessened once I felt I really had a handle on things and enough energy to mount a good fight.  Others have a tougher time so it's very individual.

Wishing you continued smooth sailing. 🙂

Take care…..kim

[Maz]

[user=2043]Velouria138[/user] wrote:

I've been with my lyme treatment for almost 1 month and I'm feeling much better thankfully. But as the inflammation goes down I notice my knees are unstable and my hands make me awfully sad. I know a lot of you all have been dealing with RA for longer than I have, but even having it for 5 years has left me a bit of a mess.

Does anyone have any suggestions for me? Is it possible to get rid of the nodules on my hands? Might some of them go away as time goes by? Can cartilage really be rebuilt? Are there any medications/supplements that can help with the after math of RA?

And is it normal to feel flooded with emotions, mostly sadness, while on a lyme protocol? It's weird, I'm normally upbeat but lately I just want to cry! Oh well, I know I will feel better emotionally, just wondering if it has happened to anyone else.

Hi Velouria,

Sorry to hear you're down and sad…I felt this way, too, for some months when starting Lyme protocols and it would come back in waves. Usually when I changed protocols, too, and new rounds of herxing started. I'm just about to head into Mepron tomorrow and understand there is a phenomenon called, “The Mepron blues,” that can occur. I think all this is pretty par for the course and it will pass….just die-off and the body's reaction to toxins. Hormones also get really messed up with Lyme and you might notice a pattern with that. Knowing this stuff happens doesn't prevent it happening, but it sure helps to know you're not alone.

If you have The New Arthritis Breakthrough, go back and check out Brown's comments on nodules. There are a few references in the book, but one in which he describes what nodules are….the body trying to encapsulate the infection with skein-like fibers. He reckoned that folk who had elevated strep titers were more prone to nodules and it's certainly been my experience that when I was treated with bicillin shots and oral amoxicillin that the few tiny finger nodules I got in the beginning and after breaks from abx that the penicillins cleared them up within a 3 to 6 months. 😀

No, unfortunately, once cartilage is damaged by RA, it cannot be re-built. 🙁 It is one tissue in the body that is unable to regenerate. There are some docs using Synvisc intra-articular shots now to improve lubrication in the knee joint, but I don't think they can replace lost cartilage, just provide temporary relief, especially in bone-on-bone situations where all cartilage is lost, as in osteoarthritis.

I've also experienced the instability in my knees that you've shared. As my inflammation came down, I could almost feel my knees swivelling in their joint capsules when I bent them at certain angles. They'd also click and make snap, crackle and pop noises. All my joints have done this as the inflam went down and I've learned to take it as a good sign that the joints are just learning to re-sit in their proper places again when the swelling is gone. The instability is a good sign that it's time to start doing some exercises to re-build the lost musculature supporting the joint. If you can work with a physical therapist, this is best, but you can also do gentle range of motion exercises and light training at home to keep joint movement fluid and to slowly rebuild the lost muscle that holds the joint in place. The joint snapping and crackling does eventually go away…completely harmless, according to my PT, and just gases escaping from the joint capsule. My LLMD also confirmed that this was common amongst his Lyme arthritis patients and a good sign inflam is receeding. 🙂

Hope this helps to make you feel a bit better, Velouria. I know all this is unnerving and scary, but it does all get better with time. Remember the bone scans Dr. Brown showed in his video? I always think about those when I get down and remember that this is a long old process and will take for the body to get rid of all the infections and, thus, the joints to get rid of all the inflam.

Peace, Maz

 

[Velouria138]

[jlane1111]

Different questions – hope someone has some answers for me-

1.  I was considering having my husband try NAC since he has such difficulty with mucus buildup – terrible coughing and a raspy voice.  Has anyone had good results from it?

2.  Also, esophageal motility is a problem which is creating a need for a balanced liquid diet at the moment.  Does anyone have some ideas for high calorie smoothies or green smoothies as he needs to gain weight?    

3.  His neck is fairly restricted from radiation fibrin buildup/scarring which exacerbated the scleroderma. I came across a gel called “Transdermal Verapamil 15% gel”  It's a treatment for fibrotic tissue disorders (such as Dupuytren's disease)and is a calcium channel blocker. Reportedly it decreases the production of collagen and fibronectin and their release from the fibroblast, which is responsible for producing collagenase.  Has anyone heard of this?

4.  FIR Sauna – Has anyone been able to have their insurance company pay for a sauna as “durable medical equipment?” My insurance co said I would have to write something up (along with my doctor) to support its use as its considered “experimental and investigational.”  If anyone has any research or literature that I can use to support its use, I would greatly appreciate it.

Diffuse SD is such an insidious disease.  He's on Mino (7 mos) and once weekly “Z” plus multiple supplements but we're not really seeing any progress yet.  Would love for the Raynaud's to abate.  This is all taking such a long time.  I hope to have him on Clindy IV's within the month and would love to have a sauna by then!  We keep moving forward trying to find the best combination that will bring relief. 

This site has been a godsend!

Jo  

          

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