IVs or not? Little update

[m.]

Hi all, per my sig line, I had my first major arthritis flare in May of this year. I tested positive for M. hominis through the test at The Arthritis Research Center. I began Doxy in July at 50 mg on MWF.

I hit a rough patch this last week or so. Waking up near dawn with numb hands, painful wrists, and pain shooting up my arm. This is new for me. Oh, and plenty tired. I don't want to do anything.

We've had plenty of weather changes here in Chicagoland, so that may have something to do with it.

I talked to my MD, and he suggested raising the dose to 100 mg MWF, which I did. (I've only taken one dose at 100 mg). He is not an AP doctor; just somewhat cooperative.

I am not being monitored by blood work, which from my reading of the Historical Protocol can be very helpful in determining what is a Herx, and what is disease progression.

This last week when I was feeling especially bad, I found it was quite stressful to my mental health to feel like I'm trying to figure this all out on my own. I'd hate to blow it, since I feel like I've got a chance to catch this disease early.

My husband and I were discussing just how terrible it would be if my health were to continue to slide. It seems that there are just so many opinions out there, and different protocols. AP and variations within, MP, Stratton Protocol, etc.

We were talking about borrowing some money so I could travel out to see Dr. S. in Iowa. On one hand, I feel it would be such a relief to talk to someone experienced and knowledgable. On the other hand, I don't want to jump the gun and over-react (that is, I don't have a severe or long standing case). BUT, it's obvious from reading histories that some people have severe onset of the disease.

I've looked around the house, and no, I can't find any crystal balls to look into the future. 😉

What sort of things should I be thinking about when considering whether to take on the expense of an IV boost?

Thanks

[Cheryl F]

Boy that is a tough question.  I am in a similar position with my newly diagnosed husband.  Do we turn our lives upside down and get him the most comprehensive care now, or wait and see if the oral protocol he is on will work.  Probably, similar to your situation, if my husband's health declined, even for the better part of one day, we would be SUNK!  He is self employed and our budget depends on his income, and if he had to take much time off, and not fulfill his clients needs, they would find someone else to work with, so he can't really afford to be down for even one day.  I had scheduled an appointment with Dr. F in southern California, and we decided to cancel it last night.  Taking two days off in December, just seemed overwhelming.

But, even as experienced as I happen to already be with this treatment and the various other support measures that one should consider along with AP, I don't like having to manage it myself as much as I seem to need to do.  With a cooperative doctor, you probably can manage it yourself, but it is hard and you are constantly second guessing what you should be doing, which is stressful.

Sorry, I don't have any specific answer for you, my choice for my husband is to see what we can get out of the oral treatment, before we move heaven and earth to travel to see one of the most experienced doctors.

Cheryl

[Time_of_my_Life]

Hello m.

I am currently in Ida Grove doing my 2nd round of 10 IV infusions.  I was here back in March for the 1st round.  I spoke with Dr. S today (so sweet, caring and humble) and questioned him about the strain of mycoplasma he had found in me, which was the  m. hominis strain.  I asked him if the tetracycline group of antibiotics were the correct group for me.  I have been on minocycline 100mg twice a day since my first visit with Dr. S in March.  He said that as long as I am not having issues he wants me to stay on the twice a day dosage and since the minocycline has not caused any problems for me to stay on that.  IF I were to have problems he might consider changing antibiotics.  I have been in remission the entire time that I have been on minocycline so it is best to not mess with what works.

I have met a number of people this week that are also doing the IV infusions.  Dr. Sinnott will be retiring in Dec… so his nurse told me that he has been taking on extra patients these last few months.   She said that he just cannot say no!  Yes, he does truely care!!  This week there are 7 or 8 of us here.  Most weeks he would only take 2 patients so he has upped his patient load substantially!  I have heard many stories this week.  There is much hope and even more stories of success with the Antibiotic Protocol.  It is very heartwarming.

Good Luck to you.

Lori

[A Friend]

[user=732]m.[/user] wrote:

Hi all, per my sig line, I had my first major arthritis flare in May of this year. I tested positive for M. hominis through the test at The Arthritis Research Center. I began Doxy in July at 50 mg on MWF.

I hit a rough patch this last week or so. Waking up near dawn with numb hands, painful wrists, and pain shooting up my arm. This is new for me. Oh, and plenty tired. I don't want to do anything.

We've had plenty of weather changes here in Chicagoland, so that may have something to do with it.

I talked to my MD, and he suggested raising the dose to 100 mg MWF, which I did. (I've only taken one dose at 100 mg). He is not an AP doctor; just somewhat cooperative.

I am not being monitored by blood work, which from my reading of the Historical Protocol can be very helpful in determining what is a Herx, and what is disease progression.

This last week when I was feeling especially bad, I found it was quite stressful to my mental health to feel like I'm trying to figure this all out on my own. I'd hate to blow it, since I feel like I've got a chance to catch this disease early.

My husband and I were discussing just how terrible it would be if my health were to continue to slide. It seems that there are just so many opinions out there, and different protocols. AP and variations within, MP, Stratton Protocol, etc.

We were talking about borrowing some money so I could travel out to see Dr. S. in Iowa. On one hand, I feel it would be such a relief to talk to someone experienced and knowledgable. On the other hand, I don't want to jump the gun and over-react (that is, I don't have a severe or long standing case). BUT, it's obvious from reading histories that some people have severe onset of the disease.

I've looked around the house, and no, I can't find any crystal balls to look into the future. 😉

What sort of things should I be thinking about when considering whether to take on the expense of an IV boost?

Thanks

Hi m,

It's easy to feel anxious in the situation you are in.  Right now I'm thinking that you don't need to know about any of those varied treatments, for many of the diagnoses begin just like you are beginning, except your dosage is lower than I've generally seen.  I'm going to share just a few more observations about items in your post:

1) You do have an MD and he has prescribed the 50 mg. of Doxy on MWF.  It hasn't been very long since you began AP, and this treatment does take time.  Also, AP meds do address organisms that are causing us problems.  You have been tested, so apparently your physician has prescribed a med that is appropriate for the organism found.  That being the case, we've learned that herxheimer reactions occur when the organisms begin being addressed; and our immune system reacts to these organisms and their die-off.  This may account for the new or increased symptoms you are experiencing. 

2) With weather changes — changes in barometric pressure — in Dr. Brown's book, he shared actual scientific findings that showed when barometric changes occur, we can have increased pain, etc.  These tests were done using a barometric chamber. 

3) Dr. S in Iowa has always been happy to speak with patients and/or their physicians, to answer questions about treatment. 

4) Have you read “The New Arthritis Breakthrough” by Henry Scammell (which includes all of Dr. Brown's book, “The Road Back”?  If not, this would help to educate you on the treatment…. in fact, most of us were encouraged to read, then re-read, and re-read again after awhile.  When we are ill, we seem unable to comprehend and retain what we've read.  Also, as we become more knowledgeable, from our experience and from reading others' experiences, as we re-read the book, we will see things and understand them which we didn't see the last time we read the book. 

5) I hesitate to say this, because I really know so little about you; however, since you DO have an MD who has prescribed AP/Doxy for you, I'm assuring he has a good idea of your physical condition.  This should be reassuring.  Also, even though you are on such a small dosage (50 mg MWF), you might feel comforted if you skipped one of those days in order to see if these symptoms subside before the next dose is due.  If they do, then that will be a pretty good sign that your symptoms are indeed a herxheimer reaction and your infection is being addressed, which is necessary to get well. 

From my own experience, I wasn't surprised about anything I was feeling after the beginning IVs and then 100 mg twice daily on MWF, for I'd read about the herxheimer reactions.  In the book I mentioned above, some patients really have terrible herxes, while others vary. 

Teenagers with acne, and the very elderly with bronchiectasis have used these tetracycline drugs for years with no adverse, longterm side effects. 

Good luck to you.  I'll bet in several months you'll be having many more good days than bad. 

AF 

[Trudi]

[user=212]Time_of_my_Life[/user] wrote:

I have been in remission the entire time that I have been on minocycline so it is best to not mess with what works.

Lori–

Since you are in remission (and BTW, congratulations), why the need for more IV's?

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?

[Time_of_my_Life]

I am in “clinical remission” … my sed rate is normal, my RF factor is normal, ANA is negative.  All my blood tests read normal.  I told Dr. S that I was still feeling fatigued and have occasional twinges in my wrists and neck that just didn't feel “right”. He said the twinges could be from mycoplasma die off.  I could wait and see how it goes or I could come back for another round of IV's…It was my decision.   I decided to give myself that extra boost!  9 IV's down and 1 more to go in the morning.  I'm already feeling better!  😀

Lori

[Trudi]

Thanks for the explanation–

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?

[m.]

[user=2]Cheryl F[/user] wrote:

Sorry, I don't have any specific answer for you, my choice for my husband is to see what we can get out of the oral treatment, before we move heaven and earth to travel to see one of the most experienced doctors.

Cheryl

Thanks Cheryl, your post reflects a lot of my own feelings. I'm sorry to hear about your husband, but it is so good you're catching it early and you already know about the protocol.

Makes me want to test everyone in the family!

[m.]

[user=212]Time_of_my_Life[/user] wrote:

[m.]

Thanks AF.

Yes, I'm think I'm reading TNAB for the…3rd time? Agreed, I get something new out of it each read.

No, I'm not very reassured by my MD at all, so I think that adds to my uneasy feeling.

I slept through the night last night (instead of waking with numb hands and aching wrists/arms), and my whole outlook is better this morning. Duh.

[Parisa]

Hi m.

My husband always would get a bad flare up in Fall and I've seen others comment about it every year so A Friend is right about the barometric changes.

So far this year, we haven't seen the flare up so things are still moving in the right direction for us and it took us quite a while to get here.  I know it's hard to to do it alone but it could be worse.  You could be blindly following a traditional protocol where you didn't have to think or research a thing and you could be getting worse and worse.  Unfortunately this protocol does take time.

Glad you're feeling better today.  You'll figure things out.

[JBJBJB]

Lori,

So glad to hear you are out there. I am really glad you had 8 RA people around. What fun!!! Do they know about this message board? It's so exciting. when I was there, I did not see any one, except one person with SD, and she did not really want to talk much so I left her alone.

I just posted my update from Dr. S link. http://www.rbfbb.org/view_topic.php?id=340&forum_id=1&page=9  So I will do the IV from home. I am so very thankful to Dr. S who made this arrangement for me. What a great person he is.

Lori, I am truly happy for your recovery.:roll-laugh::roll-laugh::roll-laugh::roll-laugh:  

Thank you for the update!!!

JB

 

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