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thats ok debbie, i just seem to remember when i first had all my test to confirm r.a., one of them was an a.n.a test, i dont know what it means? and my reading was 1:640. thank you for your reply. i do hope you get some help soon. i remember years ago when i was dxd with cfs/fibro, i remember reading a book on cfs, and it said that coffs harbour had a really high incidince of cfs. i know you have not always lived there , just thought i would mention it. that was around 1990. all the best…kind regards …di.
Hi Debbie,
Sorry for the delay in getting back to you. It’s probably a good thing, though, because it gave my brain more time to process what you wrote. 🙂
Based on what you wrote, I think it’s quite possible that you have Lyme Disease. And probably at least one co-infection as well– your extreme fatigue suggests that you may have babesiosis in addition to Lyme Disease. Of course, this is not a diagnosis; I am telling you this so you can talk to your doctor about getting the appropriate tests done.
Since you mentioned that you are suffering quite a bit, you may need to increase the amount of prednisone that you are taking. Dr. Brown said that limited use of prednisone is allowed, but to keep the dose below 5 mg per day. Another idea is to try replacing ibuprofen with a different NSAID. There is also an anti-inflammatory drug called hydroxychloroquine (Plaquenil) that you may want to look into. Quite a few people on this forum are taking it in addition to antibiotics.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Phil,thanks so much for getting back to me.
I did have a test for lymes when i first got sick ~ but nothing showed. Maybe i need another test. It has crossed my mind lately as i have read a few peoples stories.I get the feeling lymmes is one of those things that doesnt always show properly?? Would i be right?? Do you know the exact test to ask the dr for?? and the best site to find out info??
I forgot to mention i have had raynards too for a very long time and last year it was very severe. All my fingers had stayed discoloured and my feet are bad… I cannot bare the cold (which is hot for most people)
Since i posted last i still have been in extreme pain. Mostly night ~ i cant cope with the pain.So that would be over 4 weeks.I’m a wreck from the pain. I have felt my body has had one big “flare”.
not able to walk with the pain. I have been to three different people chinese etc to try and help me, but none have been able to settle down the feet, my whole body has been aching…….
I cut back to the 50mg m,w,f, as you had suggestedA lady suggested maybe i should stop taking the antibiotics for a week and get them out of my system… Then maybe go back in real slow eg 25 mg. ….I may be really sensitive….. I know i am to all other drugs…. maybe they were too strong for me???
Do you know if there is a problem having a break once the “ball” is rolling and how long i should wait before trying again??
They definitely caused something radical to happen in my body!!
I have just stopped the antibiotic and last nights (wed) one. my body felt less on fire and i noticed a very slight change with sleeping. I have actually just been able to start walking a bit now and i can nearly make a fist with my hands.3 fingers are still swollen, my whole body feels less aches and pains.It will be interesting to see how i go tonight.
I am thinking that due to the pain…. there must be something going on (there must be bacteria in my system for me to get results)
If it were lymmes would these antibiotics work on that too??I would really love to hear any imput you have on these latest findings of myself! lol
and appreciate any ideas or observations that come to mind,
thanks again,
take care DebbieDo you know if there is a problem having a break once the “ball” is rolling and how long i should wait before trying again??
Debbie – I think you meant me with this reference. Dr Brown stated that breaks of up to 4 weeks should not affect progress. It really does seem as if there is hypersensitivity going on and you would probably be wise to take a short break then start again at a much lower dose. If you have the energy, take a look around the info on our main site (click anywhere on the banner above to access it) and read Scleroderma: The Proven Therapy that Can Save Your Life by Henry Scammell. And I too believe that Lyme Disease may well be at the root of your SD. Many SD patients on this forum have found this to be the case.
Here is a link to the main site about the hypersensitive state:
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-14210
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)Hi lynne, yes i was referring to you. Thankyou for the reply I actually bought that book, ‘scleroderma” but cant find what i did with it. Does he mention the lymme in the book?. i may have overlooked that part. thanks for the info and giving me some new insights….. I will check out the hypersensitivity link now too, best wishes
DebbieHi Debbie,
@Debbie star wrote:I did have a test for lymes when i first got sick ~ but nothing showed. Maybe i need another test. It has crossed my mind lately as i have read a few peoples stories.I get the feeling lymmes is one of those things that doesnt always show properly?? Would i be right?? Do you know the exact test to ask the dr for?? and the best site to find out info??
The tests that most doctors typically use for detecting Lyme Disease are very unreliable. Regarding which test(s) would be best and how to go about getting them, I think that some of the Australian Lyme patients here might be in a better position to answer those questions.
@Debbie star wrote:
A lady suggested maybe i should stop taking the antibiotics for a week and get them out of my system… Then maybe go back in real slow eg 25 mg. ….I may be really sensitive….. I know i am to all other drugs…. maybe they were too strong for me???
That is a good idea. I should have suggested it, but I guess I was thinking it might not be necessary.
@Debbie star wrote:
I am thinking that due to the pain…. there must be something going on (there must be bacteria in my system for me to get results)
Your reasoning is correct. What probably happened is that the doxycycline made the bacteria sick, causing them to release cytokines. Your immune system then picked up the “scent” and began attacking the bacteria. Before you took the doxycycline, your immune system didn’t know that those bacteria were there.
@Debbie star wrote:
If it were lymmes would these antibiotics work on that too??
Yes, doxycycline is one of the antibiotics used to treat Lyme Disease. However, if you have Lyme Disease you’ll probably need to take additional antibiotics at some point.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinPhi. Thanks for your support. I woke up today feeling a bit depressed by it all.
I had a better sleep….. but my hands were just in so much pain and hard to move….You have really helped me to keep on the track and get a clearer picture of what is going on
I got to read the info re “hypersensitive” that Lynne kindly gave me the link
to last night and that helped a great deal too,🙂
DebbieDebbie – aussies who want to get tested for Lyme still go to Igenex as the Elisa tests that hospitals such as Westmead do are notoriously unreliable. There is info on how to go about getting the bloods to Igenex on the aussielyme site and I think the Karl McManus Foundation site and people on that forum who have done so will be happy to tell you what the best process is.
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)Pain has been rearing up hard for me since early Dec. & getting worse not better. One thing i have done that maybe helping a little in addition to AP is 5,000 mg’s of Vit C 3 times a day – with meals. This is helping me feel a little stronger – but only been a week so early days. I am also doing Bee Venom Pellets 4 4 times a day. The pain makes sleep difficult at times & wakes me up if i do get to sleep. It is hard as it is unrelenting – but I am hopeful for this to lessen while trying to hang onto my sanity.
I have systemic SD & doing things has been getting harder & harder – quicker than i thought they could – but perhaps it is in my head but my fingers seem a little better than they have been but need to get off of here – they are saying to me now.
I read about Gotu Kola on the net as being helpful too in SD – i have not tried that yet but I did order it – I think having a few things are not a bad idea with the AP – especially when this has been ignored for years.
JillJill, how are you feeling now with the pain??
I too am looking at things ~ natural to help with the pain.
Tumeric (curcumin) is supposed to be a great anti inflammatory and pain relieverHow did you go with the guta kola
I am wondering if anyone would know ~ maybe Phil or Lynne?;.
I have been off the antibiotics for a week now. I still seem to have such bad pain, still unable to sleep.I am wondering how long you think it might take for things to back off a bit??
Do you know of anyone else who has the “hypersensitive reaction”??
and are there any other info pages that might refer to how long things might take to settle down a bit after stopping taking them.
I am a bit worried ~ not sure where i am with it all,
thanks so much,
any ideas at all would be appreciated,Debbie
Hi Debbie,
Just wondering if you have had any other abnormal labs, such as cardio CRP and/or SED? If so, can you share them with us? The odd thing about SD, in general, is that there is a strange lack of inflammation and these patients don’t usually herx unless there is an overlapping rheumatic disease that does have an inflammatory component, such as RA or Lupus. Where there is no inflammation, there is generally no hypersensitivity reaction. Hypersensitivity is due to excess inflammation caused by runaway herxing that leaves too much circulating antigen (bacterial toxin) in the body. When there is too much antigen floating around, the body’s reaction is to send out its soldier antibodies and these cleave to the antigen, resulting in high levels of circulating immune complexes (bound antibodies and antigens). SDers without inflammation generally don’t have this problem, so it would be helpful if you can look to see if you have had these labs drawn prior to starting AP and if these have risen at all since beginning AP. If your cardio CRP and SED rate has gone up, this is usually a good indication of herxing, after AP has started. Strangely, while many SDers don’t herx, those with Lyme can and do herx and this is why it’s a good idea to get tested for this infection, because usually a combination oral abx protocol (and sometimes IVs) are needed, as I think Phil also mentioned.
I’ve come into this conversation late, but can you also share when you began AP and if your symptoms were progressively getting worse prior to starting AP or only shortly after you began AP?
The reason why most SDers prefer minocycline is because it has superior lipid solubility. This means that it is able to cross cell walls more efficiently than other tetras, like doxycycline and the older tetracycline. Results seem to arrive more swiftly with minocycline, as a result and the goal dose for SD is to get up to 100mg BID (twice daily). SDers need the higher dose as it provides greater immune-modulation and will slow SD progression down more swiftly.
If you can, ask your doc if he will draw your labs on a regular basis (disease markers like ANA, inflam markers like CRP and SED, complete blood counts and metabolic panel) so you can keep a file with copies of results at home to watch over time. These can be very helpful to watch your progress on the therapy and can also help to determine if the protocol needs to be tweaked/switched up over time.
It is very important for SDers to learn how to safely detox, because this mechanism slows down dramatically when chronically ill. Some SDers cannot use epsoms/peroxide baths as their skin is too dry already and these need to be saved for later, when skin improvements occur. One of the best ways for SDers to detox is to get a portable FIR (far infrared sauna) and to gradually get the body to sweat again. The skin has been dubbed, “the third kidney,” and when we can’t sweat, we can’t release toxins in this way. This type of sauna is wonderful for those suffering with Raynaud’s (needs approval of doc) and to ease joint pain.
Keeping bowels regular is also vital, because one of the probs with SD is slowed gut motility. When stool remains in the gut too long, it stagnates and toxins are reabsorbed into the body and re-circulated which cause and increase pain. So, doing what you can to stop this occurring should help. I think someone already mentioned drinking lots of pure, fresh water, which is great, but also learning what food intolerances you may have will also help….gluten can be a big one for SDers…and eating a good, clean diet with lots of fiber. There are many things that can be tried to get bowels moving regularly, if this is a problem.
Systemic enzymes are terrific for thinning sticky blood, another common issue with SDers, but also for breaking down fibrotic tissue. Common ones used that you might like to research are serrapeptase and nattokinase. These need to be taken on an empty stomach as otherwise they just become digestive enzymes and won’t work systemically. NAC (N-acetylcysteine) is a terrific supplement for boosting glutathione in the liver (body’s master detoxifier) and it is also used to break down and prevent lung fibrosis. Alpha lipoic acid (ALA) is also great for its anti-oxidative properties. Undenatured whey protein is an excellent way to boost glutatione levels in the body, too. With most supps, it’s best to introduce one thing at a time and gauge response before adding another.
There are many things that can be done to support AP, such as these things, but these are common core “staples,” in addition to ensuring one takes a good quality probiotic (and enough of it) daily, spaced well away from the antibiotic with at least a two hour window either side. This is important so that the abx don’t interfere with the probiotic, which is intended to replenish the good fauna in the gut.
The mode of approach to treating SD is quite different to treating other rheumatic diseases, so it’s important not to get confused by what others are doing for their RA or other rheumatic disease. Usually, SDers want to hit their disease hard to push it back, because it can be a bit of a “freight train” and it can take a while to slow that train down and begin to see results. If you can, it might be helpful to talk with GayG, our newest forum volunteer, but who is now a veteran of AP, having reversed nearly all of her most troubling SD issues. She had a very challenging first year, but went from strength to strength after this.
I hope these additional thoughts that sprang to mind might help, Debbie, and apologies if I have repeated anyone else’s suggestions…it’s late here and I just quickly scanned the previous posts from all the kind-hearted folk here who have already replied.
Thank you all for these useful insights, which help to clarify my initial reactions to AP.
Maz, you mentioned that SDers have ‘a strange lack of inflammation’ and that they don’t usually herx, which seems to be true in my case, even with my recent increase in dosage from 100 mg daily to 100 mg twice daily.
What exactly is inflammation in this context, since my hands are often quite swollen in the morning?
@notabene wrote:
Maz, you mentioned that SDers have ‘a strange lack of inflammation’ and that they don’t usually herx, which seems to be true in my case, even with my recent increase in dosage from 100 mg daily to 100 mg twice daily.
What exactly is inflammation in this context, since my hands are often quite swollen in the morning?
Hi Notabene,
Well, there could be a few causes for swollen hands in the AM, but generally speaking, circulation is compromised in SD (hence Raynauds) and the hand contractures of SD are pretty classic for the disease. So my best lay insight is that blood vessels (and the lymph system) are being constricted as a result of hardening tissues and this fluid build-up occurs while the body is at rest and not moving. I don’t actually have SD, so others here may be able to share more on the mechanism. The pain of peripheral neuropathy that some SDers also experience may also result due to compression of blood vessels and nerves from hardening tissues. The hands and feet are the furthest part of our limbs from the heart, so when circulation is compromised, maybe little wonder that this part of the body is affected?
Notabene, you’d probably get a much more comprehensive explanation from a good doc, but here is a website that has some description of how the hands may progress, explaining how blood circulation is compromised in the hands and other parts of the body:
http://www.umm.edu/patiented/articles/what_symptoms_of_scleroderma_000088_2.htm
Hope this helps a bit?
@Maz wrote:
Hi Debbie,
Just wondering if you have had any other abnormal labs, such as cardio CRP and/or SED? If so, can you share them with us? The odd thing about SD, in general, is that there is a strange lack of inflammation and these patients don’t usually herx unless there is an overlapping rheumatic disease that does have an inflammatory component, such as RA or Lupus. Where there is no inflammation, there is generally no hypersensitivity reaction. Hypersensitivity is due to excess inflammation caused by runaway herxing that leaves too much circulating antigen (bacterial toxin) in the body. When there is too much antigen floating around, the body’s reaction is to send out its soldier antibodies and these cleave to the antigen, resulting in high levels of circulating immune complexes (bound antibodies and antigens). SDers without inflammation generally don’t have this problem, so it would be helpful if you can look to see if you have had these labs drawn prior to starting AP and if these have risen at all since beginning AP. If your cardio CRP and SED rate has gone up, this is usually a good indication of herxing, after AP has started. Strangely, while many SDers don’t herx, those with Lyme can and do herx and this is why it’s a good idea to get tested for this infection, because usually a combination oral abx protocol (and sometimes IVs) are needed, as I think Phil also mentioned.
Thankyou Maz, for these great insights
What is the cardio CRP and SED??
Do you think i should stay off the antibiotics longer? and see what happens …….or
could get the antibiotics going again
and get the lymes test done a bit later (as i think it is costly) and i am short of money. I will check out the price for the test at Igenex (here in australia)as Lynne has suggestedHow can i find out if i am herxing or my symptoms are getting worse.
I am starting to get a bit scared now as the pain is not easing up and its been a week now since i stopped taking the antibiotics,i am so confused now of what to do.
Sorry if i am repeating myself ~ I just feel all over the place with the painI really need some guidance from someone if i can.
Maybe a list of what to do;
I really need some help with sleeping as its been 5 weeks now and i am a wreck
is there a good a pain killer someone could suggest or should i take something for the blood vessels (a medication) maybe for the raynards (I dont really like to take the medication, but i am desperate at the moment)It has been over a week now and the pain in the night is unbearable. It seems that if i keep my hands in one position for too long eg 10mins i am woken up with terrible pain and cant move my hands (its like rigamortis is setting in)
My whole body is aching ~ but especially the extremities hands, fingers, arms wrist,feet and anklesDo you think I should i go back to my gp and get those test that you have referred to Maz??
can you list exactly what to ask for (he is a gp) and not too clued up on the protocol even though he has heard of it
The only things that have shown on my tests is a positive marker to scleroderma 1:640
speckled tincture.
Also i got the dr to do a herpes test as i read a paper a man had written who suggested that sclerodema could be caused by the “herpes” virus (which showed i had it in my system).
has anyone heard of this??I started the antibioics 1st december last year. Then on the 18th december i started getting all the pain everywhere.
I really only hve a couple of fingers that have the obvious swelling. My whole body just got so sore to touch.
Before that i was not too bad end of october ~ thought i may even be getting a bit better.Then november i started having aching hands, i went to my gp and he did 4 lots of acupuncture.
Also i started getting morning stiffness when i got out of bed.Then it just all hit mere (severely). i couldnt squat down, pain everywhere
I,m not sure whether i should try and get the minocin.
I do have trouble taking antibiotics (stomach wise) and i do believe that i am very sensitive to drugs and that it maybe true i may only need a smaller dose. The doxycycline didnt seem to upset meI’ve come into this conversation late, but can you also share when you began AP and if your symptoms were progressively getting worse prior to starting AP or only shortly after you began AP?
The reason why most SDers prefer minocycline is because it has superior lipid solubility. This means that it is able to cross cell walls more efficiently than other tetras, like doxycycline and the older tetracycline. Results seem to arrive more swiftly with minocycline, as a result and the goal dose for SD is to get up to 100mg BID (twice daily). SDers need the higher dose as it provides greater immune-modulation and will slow SD progression down more swiftly.
If you can, ask your doc if he will draw your labs on a regular basis (disease markers like ANA, inflam markers like CRP and SED, complete blood counts and metabolic panel) so you can keep a file with copies of results at home to watch over time. These can be very helpful to watch your progress on the therapy and can also help to determine if the protocol needs to be tweaked/switched up over time.
Are these all the tests you would recommend i try and get from my doctor?? If i ask him for what you have said he will know what they are??
I will try and contact gayc as well,
thankyou so much for all your helpDebbie
It is very important for SDers to learn how to safely detox, because this mechanism slows down dramatically when chronically ill. Some SDers cannot use epsoms/peroxide baths as their skin is too dry already and these need to be saved for later, when skin improvements occur. One of the best ways for SDers to detox is to get a portable FIR (far infrared sauna) and to gradually get the body to sweat again. The skin has been dubbed, “the third kidney,” and when we can’t sweat, we can’t release toxins in this way. This type of sauna is wonderful for those suffering with Raynaud’s (needs approval of doc) and to ease joint pain.
Keeping bowels regular is also vital, because one of the probs with SD is slowed gut motility. When stool remains in the gut too long, it stagnates and toxins are reabsorbed into the body and re-circulated which cause and increase pain. So, doing what you can to stop this occurring should help. I think someone already mentioned drinking lots of pure, fresh water, which is great, but also learning what food intolerances you may have will also help….gluten can be a big one for SDers…and eating a good, clean diet with lots of fiber. There are many things that can be tried to get bowels moving regularly, if this is a problem.
Systemic enzymes are terrific for thinning sticky blood, another common issue with SDers, but also for breaking down fibrotic tissue. Common ones used that you might like to research are serrapeptase and nattokinase. These need to be taken on an empty stomach as otherwise they just become digestive enzymes and won’t work systemically. NAC (N-acetylcysteine) is a terrific supplement for boosting glutathione in the liver (body’s master detoxifier) and it is also used to break down and prevent lung fibrosis. Alpha lipoic acid (ALA) is also great for its anti-oxidative properties. Undenatured whey protein is an excellent way to boost glutatione levels in the body, too. With most supps, it’s best to introduce one thing at a time and gauge response before adding another.
There are many things that can be done to support AP, such as these things, but these are common core “staples,” in addition to ensuring one takes a good quality probiotic (and enough of it) daily, spaced well away from the antibiotic with at least a two hour window either side. This is important so that the abx don’t interfere with the probiotic, which is intended to replenish the good fauna in the gut.
The mode of approach to treating SD is quite different to treating other rheumatic diseases, so it’s important not to get confused by what others are doing for their RA or other rheumatic disease. Usually, SDers want to hit their disease hard to push it back, because it can be a bit of a “freight train” and it can take a while to slow that train down and begin to see results. If you can, it might be helpful to talk with GayG, our newest forum volunteer, but who is now a veteran of AP, having reversed nearly all of her most troubling SD issues. She had a very challenging first year, but went from strength to strength after this.
I hope these additional thoughts that sprang to mind might help, Debbie, and apologies if I have repeated anyone else’s suggestions…it’s late here and I just quickly scanned the previous posts from all the kind-hearted folk here who have already replied.
Hi Debbie,
Will try to answer, bit-by-bit by quoting your questions:
What is the cardio CRP and SED??
These are labs that are run to measure inflammation in the body. Cardio CRP is short for “cardio c-reactive protein.” SED is short for “erythrocyte sedimentation rate,” also shortened to ESR. Sometimes these two are elevated with acute infections and various cancers, but they are also used to measure amount of inflam in autoimmune diseases. There is a website online, called, Lab Tests Online where you can look up the meaning of various labs. It is worth book-marking this link, so you can look up any abnormal labs to understand their meaning. Here are direct links to these two labs:
http://labtestsonline.org/understanding/analytes/crp/tab/glance
http://labtestsonline.org/understanding/analytes/esr/tab/glance
You mentioned have a positive ANA for SD with a speckled pattern. A speckled pattern is usually associated with a “mixed connective tissue disease (MCTD)” presentation, so would likely involve a mixture of rheumatic diseases. It’s quite a “garbage” diagnosis, as they just don’t know what it is as it looks like so many different things: RA, Lupus, Sjogren’s, Scleroderma, Myositis, etc. Here is the link to the ANA on Lab Tests Online so you can read about the various ANA patterns and what they mean. These patterns can change over time, too, so it’s worth watching this lab. Usually, with MCTD, a person will present with one rheumatic disease in the main, but will have symptoms of other rheumatic diseases, as an overlay. These are what are referred to around here as “overlaps.” In this kind of instance, it is important to know what your inflammation numbers are reading (ESR and cardio CRP), because these will likely be elevated with MCTD, unlike SD, which often presents with little or no inflammation.
“Speckled – associated with SLE, Sjogren syndrome, scleroderma, polymyositis, rheumatoid arthritis, and mixed connective tissue disease “
If you do have elevated CRP and SED rates, then this would account for any herxing, as herxing will bring increases in inflammation. This is when it’s important to back down on the dose and start low and slow, to keep herxing tolerable. Some amount of herxing is unavoidable in inflammatory rheumatic diseases and this is how Brown used to determine that the abx was reaching the intended targets (the bugs). It’s the toxins (antigens) the bugs release when they are dying off that cause the increase in inflam and feelings of being unwell, flu-like, fatigued and in pain. This is why learning how to detox is so important.
Do you think i should stay off the antibiotics longer? and see what happens …….or could get the antibiotics going again and get the lymes test done a bit later (as i think it is costly) and i am short of money. I will check out the price for the test at Igenex (here in australia)as Lynne has suggested
Well, I’m not a doctor, so can’t prescribe what you should do. However, in the same situation, I would get my doctor to run all the baseline labs prior to re-starting my AP. I don’t know how the ANA panel is run in Auz, but here in the US, the ANA is run to check to see if positive and the pattern is noted (homogenous, speckled, nucleolar, centromere) and then further tests can be run to determine which diseases are present. E.g. for Lupus, the double-stranded anti-DNA would show up or, for RA, RF and anti-CCP. So, the ANA test is quite helpful as it is a starting point of sorts to then check for pattern and disease presentation so further tests can be run to check for specific ones in a tiered-type of testing. There are cases, however, where a person might be sero-negative and still have symptoms of a particular rheumatic disease. Sometimes they remain sero-neg and sometimes they develop positive tests over time. How to run further testing should be something your doc can do for you and would just require a bit of research on his part if he doesn’t do this on a regular basis.
So, what I would have run on a regular basis to monitor things would be:
SED
Cardio CRP
ANA (and further tests to determine which rheumatic overlaps there may be)
Complete blood count
Metabolic Panel to include liver and pancreatic enzymes and kidney values.How can i find out if i am herxing or my symptoms are getting worse.
Well, this is why getting baseline labs are helpful. It’s a starting point. Then, when AP is begun, these labs can be re-run at monthly or 2-monthly intervals to check for worsening. Labs will often worsen with herxing and this often occurs for several months at the outset and any time the protocol is changed up and susceptible bugs are being hit. However, after this initial worsening period, the labs should begin to slowly drop. This is explained on the main site and in the Scammell book, The New Arthritis Breakthrough, which is worth reading to understand the therapy rationale. Here is a link to the Historical Protocol on the main site where you will find some of this information:
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Laboratory-45656
I am starting to get a bit scared now as the pain is not easing up and its been a week now since i stopped taking the antibiotics,i am so confused now of what to do.Sorry if i am repeating myself ~ I just feel all over the place with the pain
Don’t worry, Debbie. I think we all understand pain here and the panic of wondering if we’re getting worse. 😥 This is a good, safe place to vent if you need to.
The fact that your pain hasn’t eased since stopping your doxy makes me wonder if this is not herxing, but flaring. You mentioned worsening symptoms prior to starting your doxy in Dec, so it’s possible you were heading into a flare and the doxy may have tripped off some additional herx symptoms (if you have an inflammatory component).
Maybe a list of what to do;
Well, as mentioned, we can’t really tell you what to do, just what we would do in the same situation. 😉 So, the above is where I’d begin…getting baseline labs run. I’d also probably try to switch to minocycline, especially with the SD component. And, I’d probably ask for both 50mg and 100mg doses so I could slowly work up the dose over time.
I really need some help with sleeping as its been 5 weeks now and i am a wreck is there a good a pain killer someone could suggest or should i take something for the blood vessels (a medication) maybe for the raynards (I dont really like to take the medication, but i am desperate at the moment)
Yes, sleeping is a big problem for most when there is terrific pain. So, controlling pain and perhaps getting help for sleeping may be something you’ll need to also discuss with your doc. There are some natural ways to control pain and help with sleep, but in the early days, you may need to get some help with the “big guns.” Sleep is restorative and is needed for healing. As for the Raynaud’s, as mentioned up top, I’d look into getting a portable FIR sauna, but some folk also will use Viagara here to assist with poor circulation. Viagara is prescribed to men for erectile dysfunction and the doc may laugh at the suggestion, but Viagara was originally conceived to help folks with poor circulation issues as it will dilate blood vessels.
It has been over a week now and the pain in the night is unbearable. It seems that if i keep my hands in one position for too long eg 10mins i am woken up with terrible pain and cant move my hands (its like rigamortis is setting in)
My whole body is aching ~ but especially the extremities hands, fingers, arms wrist,feet and anklesSo sorry to hear you’re in such body-wide pain, Debbie. I do understand this and described my pain in the beginning much as you have done, as I had head to toe pain, too. This said, you shouldn’t have to deal with unbearable pain and the doc should be able to supply you with some medications for pain relief. No one wants to take these and they come with side-effects, but they can be helpful initially for short-term use. Brown wasn’t averse to using small doses of prednisone (5 to 10mg) to assist patients in the early days. I think in Auz, pred is called, “prednilisone?”
Do you think I should i go back to my gp and get those test that you have referred to Maz??
Yes, I would do this to get a proper baseline work-up. Are you working with a rheumatologist, at all, Debbie?
can you list exactly what to ask for (he is a gp) and not too clued up on the protocol even though he has heard of it
Yes, I listed labs I would do above. A rheumy might offer more comprehensive labwork, however, so this is why I was wondering if you were seeing a rheumy.
Also i got the dr to do a herpes test as i read a paper a man had written who suggested that sclerodema could be caused by the “herpes” virus (which showed i had it in my system).has anyone heard of this??
Most folks have some type of herpes in them, as we’re all exposed at some stage to one type or another. My best fellow-patient guess is that we become so immune-compromised by chronic illness that many of the latent infections we’ve picked up in life grab hold of the band-wagon and hitch a ride. Compromising the immune system further with immune-suppressive meds can sometimes also bring latent infections to the surface. At this point, there is much theorizing as to the cause of SD, but usually it is a combination of factors – genetics, age, hormones, environmental exposures to toxins and bugs, diet, a triggering infection of some sort…and wham! Picking out a particular infection as the main focal infection isn’t very easy…even with Brown’s theory of mycoplasma, as most people in the world will carry some strain or other of it. The way Brown’s theory works, however, is that it isn’t the bug that is the problem but the way in which a person’s immune system responds to that bug and the toxins it releases. In this way, a herx isn’t much different from a flare in that bug toxins are the problem. So, getting rid of these toxins is pretty important and working on ways to detox while on AP can go a long way to speeding up progress. This isn’t a quick fix, by any means, and Brown often mentioned it could take a good 2 to 5 years for patients to reach remission and, for SD patients, most prefer to remain on a lifetime of maintenance therapy thereafter to hold this remission.
I started the antibioics 1st december last year. Then on the 18th december i started getting all the pain everywhere.
I really only hve a couple of fingers that have the obvious swelling. My whole body just got so sore to touch.
Before that i was not too bad end of october ~ thought i may even be getting a bit better.Then november i started having aching hands, i went to my gp and he did 4 lots of acupuncture.
Also i started getting morning stiffness when i got out of bed. Then it just all hit mere (severely). i couldnt squat down, pain everywhereYes, the aching hands in November made me wonder if you were on a flare course. Starting the AP during a flare, if there is an inflammatory component, may have set off a herx reaction, too. Distinguishing between a herx and flare is a difficult thing to do until looking back in retrospect, as I have found. Herxes tend to be shorter in duration and improvements are seen when the worst is past, whereas with flares, these portend worsening and improvements aren’t usually seen when the worst is over.
I,m not sure whether i should try and get the minocin. I do have trouble taking antibiotics (stomach wise) and i do believe that i am very sensitive to drugs and that it maybe true i may only need a smaller dose. The doxycycline didnt seem to upset me[/color]
If you are tolerating doxy okay, then usually mino won’t be a problem. Doxy, especially in certain forms, can be harder on the stomach. Mino was created for kids with acne and can be taken with a bit of food, if needed, without too much of its value being lost. While all the tetracyclines have good effect, minocycline is really the preferred abx for SD, as mentioned, because it has superior tissue penetration. There are rare instances when mino can’t be used, as Phil mentioned, I think, but it does seem to work faster for SD patients.
Are these all the tests you would recommend i try and get from my doctor?? If i ask him for what you have said he will know what they are??
Yes, these are fairly common labs, so your doc should know what they are. If not, he should have a desk-top reference of some sort to which he can refer. Finding out if you have an inflammatory component to your rheumatic disease will be quite important as to how you proceed with your AP, Debbie. If your SED rate and cardio CRP are normal, then herxing really shouldn’t be an issue. It’s when there is inflammation that going “low and slow” will be more important with dosing or if some early, transient side-effects of mino are experienced, such as vertigo or nausea (which usually pass as the body adjusts and helped with some tweaking of dose or other measures).
Please only take the above as fellow patient suggestions. We are here to support, but can’t prescribe or diagnose….just suggest some things to take to your doctor for further discussion. It might not even be a bad idea to get a complete work-up with a rheumy, even if you prefer to work with your GP thereafter. 😉
Hope something here can help.
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