Confused re Ap for scleroderma

[Debbie star]

Hi everyone!! I am a new girl ~ so not sure ~ finding my way around.
I guess i am really trying to find anyone that can help me with some advice. I
started taking doxycycline 3 weeks ago.~ I have scleroderma.
I was having aching hands and wrists before this. Then 3 weeks ago my fingers,
hands and wrists were in so much pain ~ i cant cope. When i go to sleep and am
in one position in the night and wake up the pain is so intense feel like being
sick~ it truly is unbearable. It has been like this for 3 weeks now. I am scared
to go to sleep. I have been taking pannadol oesteo and this seems to give some
relief.
i am finding i am stiff in the joints too ~ pain in the feet and unable to squat
down.(hard to walk) This has just happenned suddenly (3 weeks). I am wondering
if this would be the scleroderma getting worse or maybe the heximer reaction?? I
have only taken about 30 doxycyclines.

Also wondering does anyone else suffer from this excrutiating pain and what can
be done for it. I just cant function at all. I have been trying to do this
naturally as i have never wanted to take steroids etc, but am desperate at this
point.
I have had scleroderma for 9 years now and have not been able to work.
the fatigue has kept me so debilitated along with the other symptoms,

I found a dr here (i am in australia)who prescribed me the doxycycline,after a
lot of convincing him and he doesnt know much about it. He has heard of it, ~
but is vague! but hopefully now i have located a dr here who may know more about
the Antibiotic Protocol
and i hope to be able to get in to see him next week

Thankyou kindly, and warmest wishes to all of you,
Debbie

[PhilC]

Hi Debbie,

I believe that it is a good sign– it means that the doxy is working. How much are you taking?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Debbie star]

Hi Phil, thanks for your reply.

It would be great if this is part of the process, then you could at least bear the pain, thinking you were ultimately getting better.
When you arent sure, you start to really worry.

I am taking the doxycycline mon, wed, fri 100mg. (300mg)
I just started taking more (150mg), as i panicked and thought i was getting worse

I was talking to someone who had SD and they said they took
Minocin 100 mg and Clinamycin 1200mg

I am wondering if i need the extra Clinamycin ???

and also if i would be better trying to get the minocin? when i talk to this new dr who knows about the AP
The doxycyclin seemed to be okay with my stomach as i have had a lot of stomach trouble with all other antibiotics for other things
any more insights would be greatly appreciated
Debbie

Also my feet are in so much pain i can hardly walk, (hands and feet feel like they are burning up), should i be using a detox foot bath to try and get toxins out??

[jbower79]

Hi Debbie,
Wow, what you describe about the pain in your hands and feet is exactly what my daughter is experiencing right now. She was diagnosed with Scleroderma this past June and then clinically diagnosed with Lyme disease in August. She has had a very difficult time of it since starting on the AP protocol. Abby cannot detox very well, so she has a heck of a time tolerating abx and she herxes very badly. She was actually doing fairly well for her after a strep infection in early December. She took Azythromycin for that infection and did not herx on it so both Dr. S in Iowa ( AP doc) and Dr. C (Lyme doc) agreed to just keep her on Azythromycin for a while so she stopped the mino because she was having terrible brain fog and dizziness with it. Well, she was doing well until I decided she needed a Vitamin/Mineral IV treatment and Glutathione push to try and boost her energy. All went down hill after that. She is is SO much pain. Dr. C prescribed prednisone thinking she is in a major herx from the IV treatment, but because the pred did not provide immediate relief, he now thinks it is the infection. We just started her on rifampin today to see how she does on it. When she stabilizes, I would like to get her back on a very low pulsing dose of Minocycline again. But we have to be so careful because when she herxes on Mino it tends to be brain fog and dizziness and she cannot function that way. She is a senior in high school and we are really trying to get her to graduation.

Good luck! I hope you find something to get relief. So far we have not found anything for Abby. She is also getting heat spots…for example this evening her arms felt feverish, but she did not have a fever. Her temp actually runs low between 97 and 97.5.

Joyce

[richie]

Hi–Most doctors tend to prescribe minocycline for the treatment of scleroderma –
richie

[PhilC]

Hi Debbie,
@Debbie star wrote:

I am taking the doxycycline mon, wed, fri 100mg. (300mg)
I just started taking more (150mg), as i panicked and thought i was getting worse

Actually, increasing the dose is likely to make things worse. If I were in your shoes, I would try reducing the dose to 50 mg MWF. You’ve been sick for a long time, so it’s not a surprise that you would need to slowly ease into the AP.

@Debbie star wrote:

I was talking to someone who had SD and they said they took
Minocin 100 mg and Clinamycin 1200mg

I am wondering if i need the extra Clinamycin ???

Adding clindamycin at some point makes sense, but adding it now would probably just stir things up even more and make you feel worse.

@Debbie star wrote:

and also if i would be better trying to get the minocin? when i talk to this new dr who knows about the AP

It’s worth a try. I wouldn’t expect it to make a big difference, but switching to minocycline may help some. It would still be prudent to go slow, though, at least initially.

@Debbie star wrote:

Also my feet are in so much pain i can hardly walk, (hands and feet feel like they are burning up), should i be using a detox foot bath to try and get toxins out??

I doubt that it would help get toxins out, but you might get some relief.

I noticed that you are taking Panadol Osteo. Although it may provide some pain relief, it does nothing for inflammation. Use of an NSAID would be more appropriate (unless there is medical reason to avoid them).

“Enteric coated aspirin can be useful when given two to three
tablets, three to four times a day. Other anti-inflammatory drugs
may be useful as well. Because of the individualized patient
response to NSAIDs, choice of drug will depend upon
individual patient response.“

Source: Anti-inflammatories

I have taken aspirin and ibuprofen for joint pain. In my experience, aspirin was more effective than ibuprofen for joint pain, but the reverse was true for muscle pain. Others’ experiences may be different.

Keep in mind that this is not medical advice. I am just passing along what I have learned about the AP and what I would do if I found myself in a similar situation.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[dianne-sunshinecoast]

hi debbie, so sorry to hear you are suffering so badly, i hope you find some relief very soon . i dont have any answers for you , as i am not experienced enough. i hope you dont mind me sending a personal email. would you be able to tell me if you are in qld, or another state , as i live in qld , and cannot find an experienced ap , doctor. , and am unable to travel. i wish you all the best… kind regards..di.

[Debbie star]

Hi Di, you dont sound like you are well either?? I really hope you are okay??…..

I am actually in coffs harbour.

I was quite dissappointed as i called the dr and had an appointment all set up (so excited he was in coffs harbour). They called me today and said he knew nothing about the antibiotic protocol. i was given a list of contacts of australian drs. I tried to contact a few and they didnt answer or moved away etc . so i had no luck.

A lovely lady told me of a lady I could contact today to try to get a more recent revised list of drs in australia that may be able to help, as soon as i hear back from her i will let you know….. ~ or you can try to contact her direct…
her name is Lynnie who is the Ausie
volunteer.She will give you a list of AP doctors in Australia and will
know which meds are good or not as many generics are a waste of money.

Or if there is anyone who knows of any – that would be appreciated

I wish you all the best, feel free to contact again if you need,
Debbie

[Debbie star]

@jbower79 wrote:

Hi Debbie,
Wow, what you describe about the pain in your hands and feet is exactly what my daughter is experiencing right now. She was diagnosed with Scleroderma this past June and then clinically diagnosed with Lyme disease in August. She has had a very difficult time of it since starting on the AP protocol. Abby cannot detox very well, so she has a heck of a time tolerating abx and she herxes very badly. She was actually doing fairly well for her after a strep infection in early December. She took Azythromycin for that infection and did not herx on it so both Dr. S in Iowa ( AP doc) and Dr. C (Lyme doc) agreed to just keep her on Azythromycin for a while so she stopped the mino because she was having terrible brain fog and dizziness with it. Well, she was doing well until I decided she needed a Vitamin/Mineral IV treatment and Glutathione push to try and boost her energy. All went down hill after that. She is is SO much pain. Dr. C prescribed prednisone thinking she is in a major herx from the IV treatment, but because the pred did not provide immediate relief, he now thinks it is the infection. We just started her on rifampin today to see how she does on it. When she stabilizes, I would like to get her back on a very low pulsing dose of Minocycline again. But we have to be so careful because when she herxes on Mino it tends to be brain fog and dizziness and she cannot function that way. She is a senior in high school and we are really trying to get her to graduation.

Good luck! I hope you find something to get relief. So far we have not found anything for Abby. She is also getting heat spots…for example this evening her arms felt feverish, but she did not have a fever. Her temp actually runs low between 97 and 97.5.

Joyce

*******************************************************************************************

Hi Joyce, thanks for taking the time to write to me…. I feel so sad for your daughters pain and i can relate so much.
A lady suggested i try to take a bath in the epsom salts… I am trying it out for my feet right now.
Also i am trying to take some apple cidar vinegar and honey drink to try to reduce the inflammation. a warm drink twice a day. a tablespoon apple cidar vinegar (from the health food shop ~ quite cheap) and a teaspoon of honey. I grate a bit of ginger too ~suppose to be good for circulation (if she has the raynards going on).Two of my fingers are really swollen and i cant make a fist
I really hope Abby finds something too and she can make it through graduation. Please get back to me if anything works for her.. I would like to know.
Just trying anything i can think of right now as im sure you are too,
all the very best, Debbie

[Debbie star]

@PhilC wrote:

Hi Debbie,
@Debbie star wrote:

I am taking the doxycycline mon, wed, fri 100mg. (300mg)
I just started taking more (150mg), as i panicked and thought i was getting worse

Actually, increasing the dose is likely to make things worse. If I were in your shoes, I would try reducing the dose to 50 mg MWF. You’ve been sick for a long time, so it’s not a surprise that you would need to slowly ease into the AP.

@Debbie star wrote:

I was talking to someone who had SD and they said they took
Minocin 100 mg and Clinamycin 1200mg

I am wondering if i need the extra Clinamycin ???

Adding clindamycin at some point makes sense, but adding it now would probably just stir things up even more and make you feel worse.

@Debbie star wrote:

and also if i would be better trying to get the minocin? when i talk to this new dr who knows about the AP

It’s worth a try. I wouldn’t expect it to make a big difference, but switching to minocycline may help some. It would still be prudent to go slow, though, at least initially.

@Debbie star wrote:

Also my feet are in so much pain i can hardly walk, (hands and feet feel like they are burning up), should i be using a detox foot bath to try and get toxins out??

I doubt that it would help get toxins out, but you might get some relief.

I noticed that you are taking Panadol Osteo. Although it may provide some pain relief, it does nothing for inflammation. Use of an NSAID would be more appropriate (unless there is medical reason to avoid them).

“Enteric coated aspirin can be useful when given two to three
tablets, three to four times a day. Other anti-inflammatory drugs
may be useful as well. Because of the individualized patient
response to NSAIDs, choice of drug will depend upon
individual patient response.“

Source: Anti-inflammatories

I have taken aspirin and ibuprofen for joint pain. In my experience, aspirin was more effective than ibuprofen for joint pain, but the reverse was true for muscle pain. Others’ experiences may be different.

Keep in mind that this is not medical advice. I am just passing along what I have learned about the AP and what I would do if I found myself in a similar situation.

Phil

Hi Phil and thanks.
Your answers have helped a lot,
I”m trying to work out whats going on.
Its quite wierd, some of the pain is responding to the oesteo tabs, while the other is responding to the ibuprophen.
I will take your advice and take a bit less of the antibiotic.
Have you heard of people who have had results with the doxycline??
Thanks again, Debbie

[PhilC]

@Debbie star wrote:

Have you heard of people who have had results with the doxycline??

Yes, though I don’t remember if any of them had/have scleroderma. As for scleroderma specifically, I know of a woman who wasn’t doing well on minocycline. Her doctor switched her to tetracycline and she reported that she started feeling much better.

Minocycline has a higher incidence of side effects compared with doxycycline. Some people can’t take it at all because it makes them seriously ill– they develop conditions such as drug-induced lupus erythematosus (DILE) and pulmonary eosinophilia. Don’t let that deter you from trying it, though, because minocycline seems to be the antibiotic of choice for the treatment of scleroderma. However, contrary to what some doctors may think, minocycline isn’t the only antibiotic that is effective.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[PhilC]

Hi Debbie,

What kind of scleroderma do you have?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Debbie star]

Hi Phil,
I am probably confused about that too.
I should really do a write up about my situation.

I got sick about 9years ago. I just couldnt do anything. sleeping 13 hours, do the dishes exhausted, back to bed, need to sleep, brain fog, couldnt make the bed, no nrg, pain in arms thought was fibromyalgia, light sensitivity, noise sensitivity, unable to do anything as it exhausts me. Anything mental or physical~ cant talk or listen to anyone for too long (so i have to hide) so i dont get caught up with anyone. Nothing showed up in tests except glandular fever. The dr said ‘everyone has that”. So thought i just had cfs and fibro. Went to support groups (could hardly make it and was annoyed that beds werent there for us to lie in when we finally made it! Lol).~ talked to the other people who were working and going dancing. I couldnt believe it as i could hardly make it out of bed without being exhausted or feeling like i would fall asleep on my feet… I just couldnt stay awake! No taste and smell whatsoever for all these years. etc etc
Lots of stomach trouble (have cut out gluten and dairy) which has helped

I moved to try and make it easier on myself and started seeing a naturopath, he wanted some tests done.
I got the dr to do them (all vitamins etc), but he was angry. Then he said “while we are at it we may as well do these other tests!!”
Well i was so used to the tests coming back negative that i was shocked when he said OMG!! you have raging untreated lupus!!
That was 5 years ago approximately. He sent me to the rheumatologist who couldnt seem to give me any answers except to put me on steroids and wait. I said “wait for what?” he said “till your body starts to deteriorate)”.
He tested me and i think i am okay for heart, lung etc (internal).

I have a postive reading for scleroderma, it is 1:640 (scleroderma, not lupus)

One thing that has been so hard to deal with is the dizziness (like a virus running through my body ~ im sure i can feel it) No-one has ever been able to tell me if they have this feeling (the dr didnt know)

I have not taken any drugs for it except valium as some times i get really scared. So i have located a dr who is interested in natural therapies and i am lucky as he bulk bills. He has been giving me acupuncture all last year. I have been taking natural hormones and dhea (and believe it to be what has helped me a lot with the cfs).

It wasnt till early last year that my two baby fingers both turned over at the joints ~ just happenned
Then about mid year i got these really heavy wrinkles around my mouth ~ which i found out is part of scleroderma, skin tightening and the dr said ~ “you should have more wrinkles around your eyes for your age”
Now i have these swollen fingers and am having trouble using my hands to do anything. I also got these wrist problems (dont know how) one hand the oesteo said was cartilage and the other wrist is intersection syndrome (all of a sudden) i cant remember ~ maybe i fell at some stage~ i cant cut veges , need two hands to lift anything

This dr (GP) into natural, that prescribed me the doxycycline (he said he had heard of the protocol and had even had a couple of people try it (you think he might have told me)

Since i started to take the antibiotics i feel extreme pain all over and especially in those joints.

I think i am very lucky as i havent yet had all of the other things and i really dont know what type you would call it?? Would you be able to shed some light?? from your observations and knowledge??

Thankyou so much, for all your help and i hope my story gives some better perspective of where i am coming from,
Debbie

[dianne-sunshinecoast]

hi debbie, pardon my ignorance , but what is the name of the test that was 1:640? all the best ..kind regards ..di.

[Debbie star]

Hi Di, that is okay. Im not really sure of any of the tests that people are mentioning.

Sorry it was an ana test (auto antinuclear antibody) and i had a positive tincture of 1:640 to scleroderma

Is that the test you get where you are??

this is really all i know
Debbie

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