After take antibiotic, more swelling and more pain, How can i reduce swelling?

[rosehamra]

Hi YG and Maz,

I can't find doxy brand ” Doryx” in Indonesia, so I just buy Siclidon made in Indonesia. After taking it, I feel like heartburn, something in my esophagus, therefore I take antacid to neutral it. Is it OK? How long have you take AP to see the improvement? Do you in remission? I am so worry with my disease, I 'm afraid I can't go travelling if my knee still have problem.

Love,
Rose

[Maz]

[user=2316]rosehamra[/user] wrote:

I can't find doxy brand ” Doryx” in Indonesia, so I just buy Siclidon made in Indonesia. After taking it, I feel like heartburn, something in my esophagus, therefore I take antacid to neutral it. Is it OK? How long have you take AP to see the improvement? Do you in remission? I am so worry with my disease, I 'm afraid I can't go travelling if my knee still have problem.

Hi Rose,

No, unfortunately, one is not supposed to take antacids with tetracyclines, if they contain minerals, like magnesium or calcium. These bind to the tetracycline and render it useless in the gut, because tetras are very chelative. If you have to take an antacid, then it's best to keep it well away from your doxy dose…several hours.

Be sure to take your doxy with a full glass of water to make sure it goes down, because a stuck cap can burn your esophagus. Also, don't lie down for a good hour or two, because reflux will also do that. If you get any nausea, it is okay to eat a small meal with it, but nothing with minerals. E.g. apple sauce is okay or a cracker. However, doxy is best taken on an empty stomach, if tolerated, so more of it is absorbed.

You won't see results for a while yet, because AP isn't an overnight fix. It's important to understand the rationale for AP, because early worsening will usually occur for RAers and this can sometimes go on for months until things start to improve. Did you manage to read a copy of The New Arthritis Breakthrough, by Henry Scammell? If not, highly recommend doing so and it will answer many of your questions. Also, the main site has lots of good information in the Education section, particularly in the Physician Packets (Historical and Current Protocols).

https://www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/30.html

I had very severe RA (every joint, including jaw) and, after 3.5 years, I am at about the 95% mark…I have one knee that still plays up and one ankle that will still sometimes swell. I am probably a worst-case scenario, because milder, early cases usually respond much faster, but I also have Lyme disease, which complicates things, so it's not a good idea to compare yourself to me.

Also, if you haven't already done so, watch the Brown video…especially take note of when he shows the bone scans of his patient over three years (by the time Brown saw most of his patients, they were very unwell and had RA for many years)…but, in the video you will see that it can take a while for flares and joint inflammation to subside, because it is a slow therapy. If the video stutters, just hit pause, wait for gray line to buffer to end and hit play again:

http://www.vimeo.com/3154687

Perhaps others will join in and share how long it took for them to see results, so you can see how it varies for everyone.

Hope your reflux improves, Rose!

Peace, Maz

PS Siclidon is not known to me, but I checked it out online and this site said:

http://www.drugs.com/international/siclidon.html

“Doxycycline is reported as an ingredient of Siclidon in Indonesia.”

This concerns me a bit, as it doesn't say it's doxycycline, just that doxycycline is an ingredient of Silclidon. Is there any way you can import minocycline from another country nearby? People here in the US will buy cheaper Minocin from Canada through an online pharmacy, for instance.

[rosehamra]

Dear Maz,

Buy minocin outside country is troublesome, last time I bought Serracor NK from USA, I have to paid extra cost for tax. I found other doxy called Dotur which in tablet shape but I haven't tried it. I will try this Monday. I just want to ask you regarding to ldn. What do you think about ldn? Do you have improvement with ldn? I tried it also for a month, but I had sleep disturbance. So I don't like taking it. Do you know any AP doctor list in Singapore or Indonesia? Thanks for your information

To YG,

Where do you buy minocin in Kuala Lumpur?

Love,
Rose

[Dan_M]

Perhaps others will join in and share how long it took for them to see results, so you can see how it varies for everyone.

YG and Rose, in response to Maz's request, I'll share my son's response to AP and hopefully that will be of some help.

Although he was diagnosed with scleroderma, which has its own set of symptoms specific to that disease, many of his symptoms overlap yours so perhaps that part of it will be of some benefit to you.

First of all, when he started AP he had limited range of motion in his ankles, pain in his ankles and hands, he could not bend his wrists backwards beyond the horizontal position, his fingers were swelling up and were well on their way to becoming sausage digits, he was losing strenghth in his hands and fingers, his fingers were starting to curl and become claw-like, and his knuckles were beginning to swell. He also had a large patch of hard skin on his chest, one on his right foot and one on his left ankle which is a symptom of the sd.

His AP doc started him on a fairly high dose of tetracycine, 500mg three times a day, 2 times per week. We saw results almost immediately, but perhaps that would be because of his age as he had just turned 14. He herxed immediately, and it was very bad, but if I remember it lasted only several days or maybe a couple of weeks. We switched AP docs and the new one changed his prescription to 50 mg of minocycline 2 times per day, daily (the sd protocol varies slightly from the RA protocol in that it is a daily dosage and not pulsed like RA). After 2 months he increased the dosage to 100mg, twice a day, daily.

Where we have seen results:  the scleroderma hard-skin began to reverse itself and the skin became soft. That happened within a couple of months. The scarring began to disappear, which it wasn't supposed to do according to his dermatologist, and as of today you can't see where the one on his chest was at all, nor the one on his foot. The ankle skin is soft as well, but still has a scar. For the RA-like symptoms, his range of motion in his ankles has steadily increased and the pain simultaneously decreased. The swelling in his fingers went away and no more sausage digits. All of this occurred over a period of just a few months. So the AP seems to have cured or at least put that part of his sd into remission, and has had great results with about half of his RA-like symptoms. All within the first 6 months.

Where we have not seen results: his fingers and knuckles. His fingers continued to get more claw-like, although interestingly his strength came back. Not 100%, but better than before. His knuckles are pretty nasty looking, very swollen. He still could not bend his wrists backwards beyond the horizontal position.

In December his Lyme doc added azithromycin to the minocycline, but his condition in those areas of his hands has not improved over these past months and in fact continued to worsen.

So, to summarize, we saw much progress in some of the symptoms starting a month or two after starting AP, and little progress and actually regression in some of the other symptoms.

What did not work at all: last Summer his dermatologist finally convinced us to try prednisone. Starting at 40mg per day for the first week, then 30 mg for the second week, 20 mg for week 3, and ending with 10 mg for the final week. It did absolutely nothing. Zip.

What is working now: physical therapy/occupational therapy for his hands, wrists, and fingers. GRADUALLY his fingers are starting to straighten out, although he still has pain. We have much faith in the therapy as we are FINALLY starting to see improvement in this area. We are very excited about this.

Next up: we are driving to Iowa to see Dr. S in a couple of weeks for a week of IV Clindamycin. After that, we are heading back home by way of Missouri, where we have an appointment with Dr. C who is a LLMD. As you can see, we are covering ALL the bases.

We strongly feel that now that the physical therapy is working, we are going to get off this plateau we're on now by taking the AP to the next level, and expect the LLMD to make his own adjustment's to the protocol. As long as the two protocols are in sync with each other, we should do fine. 

I hope that helps. I wish you all the best. Keep visiting this board. There are some wonderful people here who will help you in any way they can. My thoughts are with you.

[Maz]

Dan, hearing this news of all of Ryan's improvements this past year just made my heart swell and I'm having a Hallmark moment here where I've completely lost my composure, I can tell you. Just so happy to hear this news and you and Sue must be over the moon!

How hard it is for parents of children with rheumatic disease to swim against the tide of conventional medicine, but you did it and it's working like a miracle. The hardest part is that there are no overnight sensations with antibiotic therapy and trusting that such a benign therapy could possibly work like this is almost impossible…but you did it and you've literally saved your dear son's life and he will not have to face the toxic drug train for life. Good job, Mom and Dad! Your courage and tenacity amazes me and admire you both for hanging in there through all the ups and downs and doing everything humanly possible to cover every corner. Your plan to see both Drs. S and C is the best of all scenarios and he should just keep getting better and better from now on. 😀

Thank you for the wonderful update! Better tell Ryan that when those fingers are right, we're expecting an essay on his journey to add to the testimonials section as our newest poster child! As a teen, he's going to love writing that…NOT! :roll-laugh:

Peace, Maz

[Maz]

[user=2316]rosehamra[/user] wrote:

Buy minocin outside country is troublesome, last time I bought Serracor NK from USA, I have to paid extra cost for tax. I found other doxy called Dotur which in tablet shape but I haven't tried it. I will try this Monday. I just want to ask you regarding to ldn. What do you think about ldn? Do you have improvement with ldn? I tried it also for a month, but I had sleep disturbance. So I don't like taking it. Do you know any AP doctor list in Singapore or Indonesia? Thanks for your information

Rose, I'm glad you have asked YG about her mino supply, because she may be able to help you find it, so it can be mailed to you from Malaysia. I believe she gets it from her dermatology clinic?

I am currently on 3mg LDN and have slowly increased the dose over the months…just about to increase to 3.5mg. Going slowly with the increases has prevented experiencing too much insomnia…just a 3 to 7 days after each .5mg increase. I can't say it has been a miracle cure or anything like that, but I do think it has helped to boost the antibiotic therapy a bit. One thing that is important is to ensure that it is the immediate release forumulation and not the extended release and it has to be specially compounded into the smaller dose capsules. Ensuring you have the right formulation is essential and I would suggest you email Skip's Pharmacy in Florida to ask him how best to get it made up properly in Indonesia with a compounding pharmacy:

http://www.skipspharmacy.com/contact.php

Unfortunately, there are no AP docs listed in Indonesia, but there are two in Malaysia. One of the docs apparently has RA, himself, and uses AP, but we have not had any feedback on either of these docs in a long time. You would need to contact them, in advance, to ensure they are still practicing and offering AP.

The other thing you can do is find an open doc in Indonesia to whom you could take the Physician Packet on the main site and just ask them if they will help you. We could then give you the contact info of Dr. S who would be open to consulting with this doc to help him/her learn the ropes. There is a chap in India who has just been able to do this and has managed to work out IVs and oral therapy with his docs. So, it can be done…you just need to find a doc willing to help and willing to learn the therapy.

https://www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/30.html

I will send you the contact info for the Malaysia docs in a PM, Rose. Just click top right where it will say, “You have 1 new message.”

All the best in your searches!!!

Peace, Maz

[YG]

Dear Rose, Maz, Dan,
i am so happy after seeing so many post and sorry for my late reply.

I get Minocycline from a dermatology clinic because Mino is widely use to treat acne problem. Last few month i just walk in to buy Mino there.
I have been trying Doxy (generic)and Mino and some other Antibiotic last few months. I found i am very sensitive with Mino and some antibiotic, but not Doxy. Now i restart Mino because Mino is got the best penetration, so i go for it again. I also take Prednesolone 7.5mg since mid Feb till, now i just reduce to 5mg a day (2 days ago) and still find tune to tolerance condition. I also take chinese doctor medicine to release pain and good blood circulation.

Regarding AP doctor in Malaysia, like Maz said, 2 in the list but 1 already migrated to overseas. Another doctor who got kind of RA is in northern Malaysia. He is the one ask me to take Prednesolone to reduce swelling, (when i was suffer heavy Herx and sensitive to Mino in feb 2010.) Because he know i don't want to take MTX.
This doctor actually try AP few year back, but now i can feel he do not quite support AP because he suggest i take MTX if AP doesn't work for me.
You can try to contact him for any advice.

I just have to be little bit more patient to see MINO works for me
:blush

I still got swelling in my left knee, i hard bend by leg,left ankle, few fingers, and little swelling in my wrist. I also loose hand strength, can't open things, pull thing, can't carry heavy things.

YG

[YG]

Rose,
to prevent heart burn feeling,after take AP, u must drink glass of water and u must sitting position at least 30 min.,do not lay down after take AP.

rgds,
YG

[rosehamra]

Dear Dan, Maz and YG,

Dan,
Thanks for your son's AP story, make me more hope to this therapy.

Maz,
Thanks for your info. I tried doxy brand “Dotur” this afternoon which is better for my stomach.

YG,

I just wonder whether Dr S in Buttterworth still use AP for himself or not? Can you buy Mino in pharmacy or have to dermatology clinic. Can you give me the clinic address? I will visit KL this July, may be I can buy mino in there. Thanks

Love,
Rose

[Maz]

[user=2316]rosehamra[/user] wrote:

Maz,
Thanks for your info. I tried doxy brand “Dotur” this afternoon which is better for my stomach.

YG,

I just wonder whether Dr S in Buttterworth still use AP for himself or not? Can you buy Mino in pharmacy or have to dermatology clinic. Can you give me the clinic address? I will visit KL this July, may be I can buy mino in there. Thanks

Rose, glad the change of generic has helped your tum. 🙂

That would be great if you could by mino in Malaysia while there. Just be sure not to buy more than a year's supply (and check manufacture date), because the tetracyclines have a shelf life of one year and anything older than that can cause kidney damage.

Hope that helps!

Peace, Maz

[YG]

Hi Rose,

I have been contacting the Dr T at Butterworth, we just talk through the phone few times. He shared some info over the phone.  He is not taking AP anymore, and he is quite convinced in taking MTX.  He tried AP before.

The clinic which i bought Mino from is at Puchong, Selangor. I will get the address for you before you come KL.  I usually just walk in to buy so never really know their address. 😛  not far from my place.   Usually they will ask why you buy this med and for what decease. The price i buy is RM100 for 30 capsules.

SInce you are coming to KL in July, where u plan to spend your holiday? I can tell u how far is the clinic from where u stay in KL.  U come with your family?

I have never travel abroad quite long….just trying many thing/method to get rid of RA.

Ok, shall hear from you soon!

 

YG

 

[YG]

Hi Maz, Rose and AP friends,

yesterday i see Rheumy doctor, (in Malaysia, all Rheumatoid doctor deny mycoplasma, AP) i got my blood test result, ESR 85 (last 1.5 month is 79, Jan ESR is 125).  Like Maz told me before, the blood test will fluctuate a bit before it will go down. SO, i remember what Maz said to me.  It make me not panic even little higher than 79.

The doctor ask me got take MTX? i just pretend say “yes”. According to their prescription, i have to take MTX. The reason i have to lie is if i say no, the doctor told me no need to see them anymore in future.  Its is government specialist hospital. At least i get free blood test there (all other tests).

I need to tapper down prednesolone, now i already reduce to 5mg/day for about 4 days. Next week, got to tapper down to 2.5mg.  Then have to wean off. 

The Rheumy and my chinese med doctor also disagree i take prednesolone.

Now i also reduce Mino to 100mg MWF to tolerate the Herx.

I pray this will work for me:blush:

YG

[YG]

Dear Rose,
hope everything is fine, just want to know do you feel any different after taking Doxy for few weeks?

The clinic address below is where i bought Mino (town i live now):

16B,2nd floor, jln kenari 1, Bandar Puchong Jaya, Puchong,
Selangor.Malaysia. Telephone: +603 58829088

When is your trip to KL? hope u enjoy the trip.

Its really difficult to tapper down Pred, more stiffness and i got to adapt to my body condition and more rest.

rgds,
YG

[rosehamra]

Dear YG,

My condition is still the same, hasn't changed yet. But my fatigue is improved a bit, I can walk longer time but after that my knee feel hot. My fingers still same. My blood test will be in July. I see my rheumy in ME Hospital Singapore.

Thanks for your concern.

Love,
Rose

[YG]

Hi Rose,

Is your rheumy also using conventional treatment? I am looking for AP doctor. I think the nearest is Australia.

*Anyone know how is the procedure to see AP doctor in Australia?

 

I am now reducing Prednesolone (from 5mg to 2.5mg per dy) and i change to DOxy (generic) again. Its really not easy to tapper down Pred.  My knee is giving me problem in the sense its very tight inside when walking. I believe this is because i reduce Pred.  But the swelling reduce as i did acupuncture last week by a chinese medicine doctor. The fluid need to be flush out as urine. The fluid formed around my knee according to the doctor is the the blockage of the blood circulation in the lower leg. I find more relief after the knee acupuncture.  I really hope it will help.

ok, chat with u all later…

YG

 

 

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