flares

[maz.aust]

[user=1137]Noel[/user] wrote:

………….As you?ll know from the heckling you have experienced yourself elsewhere in the past, some people listen but getting them to hear is something else.

Anyway I don?t want to start another forum war because we all know that certain types of people will bait you so that you have little option but to respond. I?m not going to allow the hard work that?s gone on here by others to be compromised in that way and since I would find it extremely difficult not to respond, I?ve decided that I will no longer post here while that condition exists. Will keep in touch though.

 

P.S  I'm doing fantastically well thanks maz. I?m now playing golf several times a week and living life to the max. 

Disease, what disease!

All the best,

Noel

I totally understand what you are saying and I too have difficulty 'shutting my big mouth' at times — sorry though that you won't be posting here.  :crying:

Am so glad you are having success with AP, I can remember when I first met you and how sick you were, your journey is a testament to those who want to have a life and enjoy it.

Will keep in touch,
Maz – Aust

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[SandiS]

I went back to old dose ( generic – 100mg MWF) with much improvement of symptoms.  Then last night neck starting hurting with stiffness.  Sometime during the night pain moved down to shoulder area. Some stiffness in other side of neck now but no pain.  Any thoughts?

Sandi

[Maz]

[user=921]SandiS[/user] wrote:

I went back to old dose ( generic – 100mg MWF) with much improvement of symptoms.  Then last night neck starting hurting with stiffness.  Sometime during the night pain moved down to shoulder area. Some stiffness in other side of neck now but no pain.  Any thoughts?

 

Hi Sandi,

It's hard to say what is going on, but with neck stiffness, I'd personally suspect Lyme involvement, as RA doesn't generally affect the spine. This was one of my first symptoms, in addition to an EM rash, though not everyone gets the rash or they will get atypical rashes that don't even look like a classic EM rash. My neck was so stiff, I couldn't turn it to look in my rearview mirror while driving and was what alerted me to what was going on. A few weeks later, the migrating joint and muscle pains kicked in…and then two months later, all out RA.

Could it also be that your stiff neck is just transitory and you've ricked it or slept on it at a funny angle? If not and it goes on, it might be worth researching Lyme further. Lyme is a complicated disease that comes with a number of equally devastating coinfections that all need separate treatment. The one antibiotic may not do it for Lyme patients and usually the doses are much higher. Just a thought that might be worthwhile considering? It's not uncommon for someone to do very well on minocycline for their rheumatic disease, but then to find later that it seems to stop working or is losing effectiveness. This is because improperly treated Lyme and/or untreated coinfections start to rear their ugly heads.

Another consideration may be drug-induced lupus or DIL. It's very rare and the liklihood of it occuring is very small (some articles I've come across report a 1 in 10000 incidence), but it does happen as I've discovered personally. The symptoms mimic Lupus and may appear like a herx, but are not true Lupus and usually occur after a period of chronic use (a year or more). There are bloodwork tests that can be done to rule this in or out for peace of mind, including the Single-stranded anti-DNA test, ANA, C3D and anti-histone. Individually, they don't mean a lot, but in combination and at certain elevations they are pretty definitive for DIL. Here is a link providing further info on this:

http://www.geocities.com/sarahmcraig/drug-induced.html

Other than this, Sandi, it could still be post-operative flaring and possible herxing from recommencing mino, not forgetting that flaring does continue after commencing or re-commencing AP, though the intensity and frequency of flares should be diminishing over time. If none of the above resonates with you, hanging on for another month or so to see if things begin to start evening out is an option. Also, doing what you can to detox is very important to support the body's ability to clear die-off.

Hope you find your answers soon!

Peace, Maz

 

[SandiS]

My husband thinks it's from playing games on the wii too much. That's certainly possible but I immediately link every ache and pain with RA. I feel like it may be still a herx. Going to give it alittle more time. I do hate having to learn another protocol if it is Lyme! Knowledge is a good thing but every now and again I want to stick my head in the sand. Does the neck involvement increase with Lyme over time?  This is anew area since all my other aches and pains have been typical RA joints.  

Thanks for the advice!

Sandi

 

[Maz]

[user=921]SandiS[/user] wrote:

Does the neck involvement increase with Lyme over time?  This is anew area since all my other aches and pains have been typical RA joints.   

Sandi, as far as I know, from my own experience, the neck pain can wax and wane, much like the disease. Neck involvement in Lyme is a form of meningitis, but not the life-threatening kind one hears about:

http://www.hopkins-arthritis.org/arthritis-info/lyme-disease/clinical-presentation.html

“What is the clinical presentation of the later minifestations of Lyme disease?

Within weeks to months of becoming infected, early disseminated Lyme disease may occur (formerly termed stage 2). Approximately 4-10% of patients in the U.S. develop cardiac manifestations, including conduction defects (e.g., atrioventricular block, complete heart block, bundle branch block, fascicular block), tachyarrhythmias (e.g., atrial due to pericarditis, uncommonly ventricular as an escape rhythm), myopericarditis, and mild myocardial dysfunction. Involvement of the central or peripheral nervous systems may occur in up to 10 to 20% of cases, may be manifested by headache, fatigue, stiff neck, and malaise, and includes such diagnoses as Lyme meningitis, neuroborreliosis, cranial neuropathies (especially facial nerve palsy, which can be bilateral), peripheral neuropathy, radiculitis, myelopathy, or brachial plexopathy. Lyme disease may also involve the eye (e.g., follicular conjunctivitis, keratitis, and rarely uveitis or vitritis). Musculoskeletal manifestations of Lyme disease are very common. During early infection, migratory arthralgias and pain in bursae, tendon, muscle, or bone occur in the majority of patients. Weeks to months later, frank arthritis, most commonly mono- or oligoarticular and involving large joints (most commonly knees, but also shoulders, ankles, elbows, and other sites), may develop. Lyme arthritis is one manifestation of persistent or late Lyme disease (previously termed state 3).

In the United States, approximately 60% of untreated patients will develop intermittent episodes of joint pain and swelling, months to years after the infecting tick bite. The most common presentation is a single involved knee, but both large and small joints may be affected, and usually only one or two joints at a time. Over time, the frequency and severity of attacks can decline, and, on average, the proportion of patients with recurrent attacks declines by 10-20% annually. Approximately 10% of untreated patients may develop chronic arthritis, defined as one year or more of continuous joint inflammation. Lyme arthritis patients have evidence of prominent cellular and humoral immune responses. Some patients with Lyme arthritis have no resolution of symptoms even after long-term antibiotic therapy, and have been termed by Steere, et al. as having antibiotic treatment-resistant Lyme arthritis. It is thought that this condition may represent an autoimmune phenomenon. Increasing evidence suggests that certain HLA haplotypes increase the risk of this condition, and that antibodies directed at outer surface protein A (OspA) of the spirochete may cross-react with an adhesion molecule on T lymphocytes that binds with macrophages and endothelial cells. This molecular mimicry may explain the persistence of symptoms after eradication of spirochetes from the joint.”

Bearing in mind that this is a mainstream website's take on chronic Lyme, it isn't bad, but the final comments on molecular mimickry are up for debate, especially as they are only talking about spirochetes and there is no mention I can find of the pleomorphic nature of Lyme, which reverts to many different forms, such as dormant cyst, spheroplastic L-form, bio-films, blebs, etc. What is becoming increasingly clear about Lyme is that the organism has a very clever cloaking system whereby it borrows surface antigens from host cells and then wanders throughout the body in this convenient cloak. The immune system senses its presence, but can't find the infection! So, yes, it probably is a form of molecular mimickry, but not the kind that continues after eradication of the infection….because the infection is still there and still wreaking havoc. This has been shown numerous times to be true in various studies and is at the heart of the current Lyme debate.

I know how you feel about wanting to stick your head in the sand and for it all to just go away. :crying: I understand that there is a very good LLMD down in Mobile, though, if you decide to investigate this further.

Peace, Maz

 

[Author]

Posts