Question about when to personally start AP

[kolby]

This is my first time posting so I will try to make it as short as possible. I joined the board back in September and have been actively logging on ever since. Let me start by saying how ecstatic I was/am that I came across RBF as it has relieved so much of my anxiety. Everything that I researched was nothing but doom and gloom and I was scared to death until I stumbled on to Rheumatic.org which of course, led me here. I am posting today to ask all of you what you would

[Maz]

@kolby wrote:

Here

[Parisa]

I think Maz has covered alot of ground in her post and I agree with everything she’s said. For my husband, his disease started with swollen palms and shortness of breath. About a month later, the symptoms started to increase and after an initial “diagnosis” by a rheumatologist of scleroderma he was moved into the mixed connective tissue disease category. A couple of years later, his disease had progressed enough for the doctors to then pronounce that he had dermatomyositis. As Maz stated, my husband’s eventual diagnosis of Lyme disease with the co-infection of Babesia lead to greater treatment options.

I can understand your reluctance to treat something that so far is benign. If we only had crystal balls, we would know whether your current approach is going to be enough to ward off the disease. I do know that once these autoimmune conditions build up steam they can turn into virtual wildfires and be very difficult to put out.

[kolby]

Hi Maz, Hi Parisa,

So happy you responded and thank you so much for your insight!

Maz you are truly amazing and have touched on everything that I have been struggling with. I did read the New Arthritis Breakthrough back in September and promise to get it back from my neighbor and read it a second time. I

[lynnie_sydney]

@kolby wrote:

I

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)

[Maz]

@kolby wrote:

All of my symptoms so far are internal with nothing showing up on the skin except for the occasional short lived rashes on my back and tummy, and I just recently started to experience dry scalp that treating with T-gel seamed to help. I

[kolby]

Hi Lynnie,

I

[kolby]

Hi Maz,

I will definitely contact IGeneX for a test kit. I don’t recall ever getting a tick bite but I guess that doesn’t mean anything. Can mosquito’s carry Lyme…they love me.

I

[redrock]

My antibodies for scleroderma are sky-high but I hardly have any symptoms, just a bit of Raynauds. For me it was a no-brainer, get on AP as soon as possible to head off what might be waiting in the wings. I’ve been on it for 4 months.

[cojaygi]

@Parisa wrote:

I think Maz has covered alot of ground in her post and I agree with everything she’s said. For my husband, his disease started with swollen palms and shortness of breath. About a month later, the symptoms started to increase and after an initial “diagnosis” by a rheumatologist of scleroderma he was moved into the mixed connective tissue disease category. A couple of years later, his disease had progressed enough for the doctors to then pronounce that he had dermatomyositis. As Maz stated, my husband’s eventual diagnosis of Lyme disease with the co-infection of Babesia lead to greater treatment options.

I can understand your reluctance to treat something that so far is benign. If we only had crystal balls, we would know whether your current approach is going to be enough to ward off the disease. I do know that once these autoimmune conditions build up steam they can turn into virtual wildfires and be very difficult to put out.

Hi Parisa………..I was hoping you could contact me privately on my private email…….i am having a difficult time navigating this site, am in very poor condition. i have had lyme & co-infections for 16 years but completely fell off the map 1 1/2 years ago – i think it may be dermatomyositis and am having a terrible time finding someone who can pinpoint what is going on. i am completely debilitated, body is filled with calcinosis nodules & continue to increase daily (which is why i think it is dermatomyositis) so many other problems as well. i was wondering if you could help me by telling me what helped your husband become 90% well and back to living life…..i have been housebound and mostly bed bound for the past 1 1/2 years and desperately want to find somethings that will help…..right now i am doing alot of detoxifying, parasitic cleanse, some infared sauna, some ozone showers and ozone enemas but nothing is helping i just keep deteriorating. i agree that once these things get started they become wildfires…..i need to figure out how to put mine out. i have to have help with everything. i am only 50 years old and have lost my life to these diseases. my email address is cojaygi@yahoo.com…………thank you so much….gina

[cojaygi]

@cojaygi wrote:

@Parisa wrote:

I think Maz has covered alot of ground in her post and I agree with everything she’s said. For my husband, his disease started with swollen palms and shortness of breath. About a month later, the symptoms started to increase and after an initial “diagnosis” by a rheumatologist of scleroderma he was moved into the mixed connective tissue disease category. A couple of years later, his disease had progressed enough for the doctors to then pronounce that he had dermatomyositis. As Maz stated, my husband’s eventual diagnosis of Lyme disease with the co-infection of Babesia lead to greater treatment options.

I can understand your reluctance to treat something that so far is benign. If we only had crystal balls, we would know whether your current approach is going to be enough to ward off the disease. I do know that once these autoimmune conditions build up steam they can turn into virtual wildfires and be very difficult to put out.

Hi Parisa………..I was hoping you could contact me privately on my private email…….i am having a difficult time navigating this site, am in very poor condition. i have had lyme & co-infections for 16 years but completely fell off the map 1 1/2 years ago – i think it may be dermatomyositis and am having a terrible time finding someone who can pinpoint what is going on. i am completely debilitated, body is filled with calcinosis nodules & continue to increase daily (which is why i think it is dermatomyositis) so many other problems as well. i was wondering if you could help me by telling me what helped your husband become 90% well and back to living life…..i have been housebound and mostly bed bound for the past 1 1/2 years and desperately want to find somethings that will help…..right now i am doing alot of detoxifying, parasitic cleanse, some infared sauna, some ozone showers and ozone enemas but nothing is helping i just keep deteriorating. i agree that once these things get started they become wildfires…..i need to figure out how to put mine out. i have to have help with everything. i am only 50 years old and have lost my life to these diseases. my email address is cojaygi@yahoo.com…………thank you so much….gina

What is AP? Thanks

[lynnie_sydney]

Cojaygi – AP stands for Antibiotic Protocols. For some foundation information on this approach to treating rheumatic disease, go to our main site at http://www.roadback.org also the FAQ section at http://www.rheumatic.org. And we always suggest people read The New Arthritis Breakthrough by Henry Scammell – available through amazon. 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)

[Parisa]

Gina,

I’ll try to post something to you tomorrow. My schedule lately has been very busy but I’m hoping for some free time this weekend.

[Author]

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