OUCH- what is happening?

[Devie]

To refresh memories- I have been doing a pulsed (one pill/day, M, W & F) of mino.  I was really getting better- great, happy, amazed!

Then I started trying twice a day/one day a week and I started itching really bad.  I talked to Dr S in Iowa and he said to go back to the original dose.  I did.

Now there is a lot of stress in my life.  My house is for sale.  My ex is being a bully about the house sale and I have had to do all the cleaning/moving/arranging (you get the picture) myself to the point of pain and exhaustion.  

Now- my RA is back with a vengeance.  Every joint just doesn't hurt- it burns!  It hurts to type this.  I am worse (painwise) than when I started.  I am drinking the lemon/oo drink and taking epsom salt baths.  I am back to Advil every 4 hours and I had gotten to taking it every 12 hours.

Here is what else I am taking:

On mino days-  probiotic 2 x/day, metagest (digestive enzymes), fish oils, B 12, DHEA, Vit E, Vit C, Oil of Oregano, Milk Thistle, Grape Seed Extract.

On non mino days I add calcium, magnesium & vit D.

Now I am wondering if I should up the dose and put up with the itching, or what????????????????

Please –you wise, been through it already Angels- send me your thoughts.  I went from thinking I could start running again to hardly walking in 2 days.

And I am depressed….

Thanks Devie

[spacehoppa]

Hi Devie,

I'm sorry that I'm not sure whether you should put up with the itching or not. I'm just not qualified enough to answer that, either medically or through personal experience. But what I did want to say is that with all the stress you're going through, you are BOUND to be flaring. I just don't see how it could be otherwise.

Until the stress abates, you're either going to have tough out a very painful time, or you might want to add in some extra pain relief, such as anti-inflammatories. Dr Brown seemed to think they have their place to get through the tough patches. I don't recommend using them long-term personally, as they've given me a stomach ulcer after 20 years continual use. But to get through a short-term period, they might help reduce your overall stress level and get you back on track.

After all, if the antibiotics can't get through your swollen tissue to the source of infection, they can't help you heal.

Whatever you decide to do, be good to yourself and don't demand too much of yourself. House moving is hugely stressful, and how you're feeling is justified and appropriate. But it will pass.

ruth

 

[Trudi]

Devie–

Don't have any answers for you, too new to the protocol myself–

Just want to give you some encouragement.  Sure sounds like you are doing all the right stuff–the stress may just be greater and when that lessens so will the pain–

Good luck,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

Devie…just responded to your PM.

Peace, Maz

[Donna RA]

Devie,

I tried using Oil of Oregano and had to stop it.  How many drops do you take?  It is very potent, maybe try cutting back on it. I also had very itchy skin when I used it, which stopped quickly once I stopped using it.

Good Luck,

Donna RA   

[Devie]

Geez guys- I keep saying that I started the Oil of Oregano in response to the itching…I have been taking 2 capsules a day and I am going to stop.

Originally it was suggested that I do take it because of the itching/inflammation of a possible herx.

I am sorry I seem so ungrateful, that is not actually the case.  But every time I pose a problem I get totally contradictory info and it is making me cookoo….  I hate doing this without guidance and without any medical guidance. 

I really am very grateful…I dont think I would be functioning if it was not for all of you!

Devie

[Susan LymeRA]

Devie,

I have not personally taken Oil of Oregano, but I hear it is very potent and can cause quite a herx.  Did the increased joint pain begin after taking the Oil of Oregano?

If so, I think this confirms your microbial infections.  You just need to ease up.  It is tempting to go faster at the healing, but it doesn't work.  This is a longterm treatment and you must find what works.

As for the stress, it is a killer.  You need to explore some stress management techniques like biofeedback and/or yoga.  I don't know of any way to eliminate stress.  We just have to learn to handle it better.

The itching sounds like an allergic reaction to the mino.  Be very careful there.  Everytime  I tried to increase the mino, I would get a rash on my face and scalp much like lupus.  My doctor switched me to doxy.

Susan

 

[lynnie_sydney]

Devie – I understand that you started oil of oregano in response to the itching. I trialled it twice – 3 drops in water the first time. I felt terrible, aches and joint pain (when I had been pretty symptom-free) and so greatly fatigued that I had to go to  bed for a couple of hours after lunch. The second time, I only took one small drop in some water. I felt really bad again (though joint pains not so acute), aches, plus tired and vaguely fluey. I decided that it was way too strong for me. Others that I know of take benadryl for itching and it seems to work well. If it were me I'd skip the oil of oregano and drink loads of purified water for a while to help flush it from your system, try some extra pain relief in the interim till your system settles – and maybe try the benadryl. Some of the rheumaticsupport.net gals seem to have some experience in all this. You may want to hop onto that board and ask. Hope you feel better very soon. 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)

[Devie]

I will call Dr S by the end of this week if I am still itching.  The flares definately got worse after the oil of oregano so I have stopped that.  I will continue on the mino this week, track the itching and call Dr S about possibly switching to doxy.  I suppose he can tell me if it is the same dose.

If it is yeast, my doc prescribed me one diflucan…I am not sure what one diflucan is going to do?????

Hopefully this week will be better- I am committed to work with my internal state and not all into that sense of urgency and anxiety that ends up driving me into a wall!

Dev

[Susan LymeRA]

Good luck with your stress situation too.  Divorce is a killer! and moving knocks a healthy person out.  Use help whereever you can get it.

Susan

[lynnie_sydney]

Devie – the rash, hives and itching can all be part of the herx and can be mistaken for an allergic reaction – this needs to be an MD's call – before considering switching. I have just checked an old paper of Dr Brown's posted on the rheumatic site and benedryl (anti-histamine) is mentioned as part of the treatment, to be taken at night. I have included a link below. Remember that he refers to tetracycline as the abx at that time (mino now being the tetra derivative of choice).You may also find that you need to temporarily lower your abx dose until things settle a little. Ask the doc. The one thing I'll say for sure is to drink  loads of water.  Lynnie  

http://rheumaticsupport.net/phpBB2/viewtopic.php?t=28&highlight=benadryl

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)

[Devie]

Please remember Lynnie- I do not have a Dr.  I have a long distance with Dr S but that has to be used very conservatively.  So – I am doing this myself, and I do not know what I am doing.

Lower the mino?  To what- less than 1 pill on M, W & F?  How little of a dose would you suggest? 

I will try the benadryl tonight for sure!

[John McDonald]

Hi Devie,

I'm sorry that you don't have an engaged doc. Even those of us that do have an AP doc find that we have to do quite a bit of our own investigation in order to recommend next action to our prescribing authority. But I need to say that the Road Back is a peer support group. None of us are licensed to give medical advice or to practice medicine. The Road Back cannot allow bulletin board members to practice medicine. So Lynnie or anyone else simply has to offer their insight and their experience in that context, as fellow patients suggesting a course for you to discuss with your licensed medical provider. Of course the Road Back also has no authority or legal interest to ensure that you consult a licensed physician. That is up to individuals.

The volunteers must follow rules and cannot directly answer a question such as how much to lower your minocycline. They can tell you how much their doc lowered their minocycline and how well that worked for them. It might even be best for the rest of the group if you asked for recommendations to pass along to your doc. No one wants to be sued.  If you choose to do this without a doc somehow then you simply must work through these answers to find what you need. Thank you.  -john

[Devie]

Thanks John!

I actually did understand that from the beginning and I believe my frustration was creating the need for me to seek perhaps beyond what was appropriate to inquire about.

It is precisely because people are posting their own experiences that so much contradictory info comes pouring forth and when someone like me, who is new to this and quite vulnerable is looking for an answer, that can be disconcerting.

I am looking for something to hold on to and I will remember that what is shared here is anecdotal.

So thank you for the disclaimer!

Devie

[Devie]

Perhaps the site may want to update the list of AP docs by state as well as contacts by state.  That would prove useful to someone like me who in fact callled the docs on the list and were told they were not AP docs and called the connection and have not been able to establish any communication.

Thanks everyone!

Devie

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