At a crossroads.. Advice needed and an ear to listen..

[tbird2340]

Howdy everyone! Been a long LONG time since I’ve posted on here.. I hope the people I used to see on here all the time are doing well and pain free.. Myself, I’m going through a pretty rough patch in my life..

I’ll try to keep this somewhat brief but it may be a book so for those who take the time to read, I truly appreciate it.

I was dx’d with RA on 12/08.. Then I was dx’d with Lyme on 4/10.. I’ve had one appointment with a Rheumy upon first DX and have never gone back to one..

Started AP within that year and then when DX’d with Lyme I started going to a LLMD.. He eventually had me on Minocin 100mg 4X daily and Clarithromycin 500MG (1)2X daily.. Throughout the years I saw him (around 3) I never really saw improvement.. It was just slowly getting worse.. I also never really had a herx with any of the treatment up to that point..

I stopped going to him around Jan 2013.. I think I also had stopped all ABX for about 6 months prior to leaving him..

I then found a guy that was familiar with the Arthritis Trust protocol.. He did some tests all via mail (he was in Mexico, I am in OH).. He ordered a whole slue of labs and hormone testing etc… I got back a report of the findings and unfortunately, nothing really “jumped out” which is what I was hoping for.. He put me on some supplements etc and said let’s see how I do.. I did that for about 3 months and nothing..

So being that guy was so far away I decided to try yet another Dr.. This was an MD that was very open to trying anything.. Basically from mid 2013 – 11/14 I didn’t take anything but a few supplements and LDN off and on.. Probably not the best idea..

Right now I just recently started the “arthritis trust” protocol.. It’s been about 2-3 weeks.. I take (1) 500mg of Azithromycin on Tuesday, Thursday, and Saturday and then I take (1 two times per day) 100mg of Doxy on Monday, Wednesday, and Friday..

My current status is the worst, easily, that I have ever been.. To think back of the pain I was in when I was the “worst” a year ago is almost laughable.. Both of my elbows I cannot straighten and are super tender (as in they sometimes hurt just driving and resting them on an arm rest).. My knees hurt, wrists are bad, and just recently my hands are starting to hurt more than usual..

I’m *hoping* this is the herx that I’ve always “wanted” but never had.. But, I fear that it’s just the huge RA snowball that is now so big and out of control that it is destroying me inside..

I take about (10-12) 200mg Ibuprofen each night.. Doesn’t do much, if anything with the pain.. I live my life in constant fear.. All I think about is the future, what it holds, etc.. I have (3) kids (3, 5, and 9).. I can’t throw a ball to play catch, can’t wrestle with my boys, etc.. Still have tons of fun with them.. Just not what I want..

The crossroads is.. Do I go to a rheumy and quit all this? I can’t even imagine the mouthful I will get of how dumb I’ve been, all the damage I’ve caused, what was I thinking, etc from a rheumy.. I just envision going to one and them saying it’s too late.. Too much damage is done.. I see them wanting to start me on the most hardcore most expensive drugs they have..

I internalize everything.. I don’t let anyone know how I feel inside.. My wife knows just from seeing me how much pain I’m in but she doesn’t truly know.. The daily struggles of every single basic activity (brushing my teeth, putting deodorant on, buttoning my shirt, etc. etc..)

I’m just so not sure what to do here.. Is this a herx? Is that a good thing? Is it just the disease raging on and I’m delaying the inevitable of giving up on alternative and going conventional..

I just don’t know what to do…

Thanks for listening.. At least I got to get some of these feelings out.. That’s progress.. I’ve been wanting to type this out for months.. The reason I haven’t been able to is that typing it out just makes everything more real.. Same reason I can’t talk about it to my wife either.. Talking about it is even more real then typing it..

I’m sure some will understand.. 🙂

Good health wishes to everyone!

Thanks,
-Tom

[tbird2340]

And in regards to if this is a herx / not a herx.. Like I said.. I’ve never really herxed when on any meds.. I’ve pretty much been on a slow and steady decline.. But these past few weeks I can say this is pain like I’ve not really expierenced.. I’ve had my knees hurt every once and a while but as of right now it hurts to put pressure on (like to get up and walk etc)..

And it’s not all day.. And now my shoulders, which haven’t ever really bothered me much, are bothering me off and on.. Same with my hands.. They’ve never really been an area of concern (some minor pain).. But now I’m having new and pretty good pain in both my hands..

So is this what is most likely a herx? If so, is that good?

[Suzanne]

Hi Tbird, sorry to hear things aren’t going well! I thought I remembered you were doing well on AP when you started.

Your story is why I would be so afraid to ever stop my daughter’s abx. It seems the same thing happens with traditional meds, if they are doing anything and you stop, it comes back worse and is harder to control. That could be one angle.

I do not think you should be worried about a rheum saying all this new pain is from damage. Perhaps you do have some damage, but it does not happen suddenly and cause sudden pain. Plus, meds do not treat damage, so you would still have pain on any meds they would could prescribe if the pain is from damage that has already been done. I hope that makes sense!

Because you describe the increase in pain to adding more abx, it does sound like a herx, and I know others will be able give ideas on helping that.

Do you believe that you have Lyme? Did the LLMD have any labs to show that his treatment was working? What did he say when you reported no improvement? If you think you have Lyme, I think it would be good if you are herxing.

That sounds like way too much ibuprofen, especially if it isn’t helping! I think that could harm your liver and kidneys, I know it will hurt your stomach. I think you need to tell the doctor rxing the abx what is happening.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Maz]

@tbird2340 wrote:

So is this what is most likely a herx? If so, is that good?

Hi Tom,

Tom, did you mean you started the CAP protocol on the CPn help website? Just wondering, as the Arthritis Trust prefers the use of nitoimidazoles (like Tinidazole or Flagyl). The CAP protocols tend to use tetas, macrolides and nitroimadazoles, but in a stepped fashion, starting with a tetra until tolerated and then adding the others in slowly in the same way. CAP also has protocols for dealing with secondary porphyria that they say can occur.

http://www.cpnhelp.org/treatment_protocols

As you just started the two antibiotics (at once) 2-3 weeks ago, you’re in the classic timeframe for herxing. Did you run labs prior to starting? Would be helpful if you had a baseline and/or more recent labs to share here (ANA, RF, anti-CCP, SED, CRP, CBC, metabolic panel). If you’ve been monitored while off abx, would also be helpful to note what worsening occurred since being off the Lyme abx. Btw, always thought the mino dose your LLMD had you on was way too high…they usually use doxy or tetra as it’s better tolerated in higher doses (no vertigo or blue-gray hyperpigmentation). It could be you were just suffering from hypersensitivity during that time, due to the high dosing of the mino/biaxin combo.

Arthritis Trust of America doesn’t have a discussion forum for peer support, but if you’re following the CAP protocols on the CPn Help site, then you might find it helpful to engage on their discussion forum to ask about how to manage your protocol and for help to offset symptoms, test for secondary porphyria and how to treat it, if necessary.

If you’re really suffering, Tom, you might find you need to see a rheumy to have help with the pain. As the main breadwinner and a young Dad, it might be necessary to keep functioning until you can get to a place where you can wean off the other drugs. It’s not a failing if you need to do this and you’ve had a rough road, thus far. Who cares what a doc thinks of your past treatment choices? You are paying them and are asking for their opinion and help in the present. 😉 A pain management specialist might also be a good idea right now, as I second Suzanne that the doses you’re taking of ibuprophen are very high and, apart from creating gut issues you’ll have to repair, the systemic effects won’t do you any good in the longer term. Something like Celebrex would be preferable to mega-ibuprophen dosing.

[Anonymous]

Tom,
Do you do any detox? Have you tried it in the past?
Linda L.

[A Friend]

Excerpts from your post, Tom:

@tbird2340 wrote:

Howdy everyone! Been a long LONG time since I’ve posted on here.. I hope the people I used to see on here all the time are doing well and pain free.. Myself, I’m going through a pretty rough patch in my life..

I’ll try to keep this somewhat brief but it may be a book so for those who take the time to read, I truly appreciate it.

I was dx’d with RA on 12/08.. Then I was dx’d with Lyme on 4/10.. I’ve had one appointment with a Rheumy upon first DX and have never gone back to one..

Started AP within that year and then when DX’d with Lyme I started going to a LLMD.. He eventually had me on Minocin 100mg 4X daily and Clarithromycin 500MG (1)2X daily.. Throughout the years I saw him (around 3) I never really saw improvement.. It was just slowly getting worse.. I also never really had a herx with any of the treatment up to that point..

I stopped going to him around Jan 2013.. I think I also had stopped all ABX for about 6 months prior to leaving him..

I then found a guy that was familiar with the Arthritis Trust protocol.. He did some tests all via mail (he was in Mexico, I am in OH).. He ordered a whole slue of labs and hormone testing etc… I got back a report of the findings and unfortunately, nothing really “jumped out” which is what I was hoping for.. He put me on some supplements etc and said let’s see how I do.. I did that for about 3 months and nothing..

So being that guy was so far away I decided to try yet another Dr.. This was an MD that was very open to trying anything.. Basically from mid 2013 – 11/14 I didn’t take anything but a few supplements and LDN off and on.. Probably not the best idea..

Right now I just recently started the “arthritis trust” protocol.. It’s been about 2-3 weeks.. I take (1) 500mg of Azithromycin on Tuesday, Thursday, and Saturday and then I take (1 two times per day) 100mg of Doxy on Monday, Wednesday, and Friday..

Thanks,
-Tom

Hello Tom,

So glad you are here.

Just want to clarify which protocol you are referring to that you have used and/or are currently using. There is a very excellent web site known as “Arthritis Trust” (http://www.arthritistrust.org) that does have papers by doctors about various treatments. So, being aware and somewhat familiar with this site, I’m not sure if you are referring to Dr. Brown’s protocols here on Roadback.org or Arthritis Trust. Will you clarify this for me/us (for comparison purposes)?

So glad you are here. I feel sure you can get much help/input from those who have diagnoses similar to yours.

Good luck to you,
AF

[tbird2340]

@Suzanne wrote:

Do you believe that you have Lyme? Did the LLMD have any labs to show that his treatment was working? What did he say when you reported no improvement? If you think you have Lyme, I think it would be good if you are herxing.

Thanks for the reply Suzanne! 🙂

I honestly have no idea if I have lyme or not.. When I got my Igenix test done the guy there said it was negative, however, others here on the board felt my symptoms pointed to positive.. So when I went to the LLMD he felt I had it as well.. He never really said much about me continuing to get worse.. I always asked if it was RA? Lyme? I’m not sure if it was a question he could even answer..

He was good and nice and always ran a slew of labs but I never saw any improvement..

@Suzanne wrote:

That sounds like way too much ibuprofen, especially if it isn’t helping! I think that could harm your liver and kidneys, I know it will hurt your stomach. I think you need to tell the doctor rxing the abx what is happening.

So I didn’t take the ibuprofen last night for the first time in at least a year.. So yea.. I think it helps a little because last night was HORRIBLE.. Maybe it is I’m just herxing bad and nothing to do with not taking it but I just know last night sucked..

[tbird2340]

@Maz wrote:

Tom, did you mean you started the CAP protocol on the CPn help website? Just wondering, as the Arthritis Trust prefers the use of nitoimidazoles (like Tinidazole or Flagyl). The CAP protocols tend to use tetas, macrolides and nitroimadazoles, but in a stepped fashion, starting with a tetra until tolerated and then adding the others in slowly in the same way. CAP also has protocols for dealing with secondary porphyria that they say can occur.

http://www.cpnhelp.org/treatment_protocols

Thanks for the reply Maz.. Now I’m all confused.. I know initially we (my wife and I) spoke to the Mexico doctor about doing the Arthritis Trust protocol.. He was willing but it was kind of odd receiving drugs from a stranger and then not having him close in case something happened..

That’s when I decided to go to this new guy I’m going to now.. He is open to everything.. My wife brought this protocol up to him and I thought that’s what we were doing but maybe he had a variation to it or something? I’m going to have to follow up with her..

@Maz wrote:

As you just started the two antibiotics (at once) 2-3 weeks ago, you’re in the classic timeframe for herxing. Did you run labs prior to starting? Would be helpful if you had a baseline and/or more recent labs to share here (ANA, RF, anti-CCP, SED, CRP, CBC, metabolic panel). If you’ve been monitored while off abx, would also be helpful to note what worsening occurred since being off the Lyme abx. Btw, always thought the mino dose your LLMD had you on was way too high…they usually use doxy or tetra as it’s better tolerated in higher doses (no vertigo or blue-gray hyperpigmentation). It could be you were just suffering from hypersensitivity during that time, due to the high dosing of the mino/biaxin combo.

On 4/11/14 my labs:

Sed Rate was 9 (Range 0-15)
CCP was >250 (Range is 0-19)
RF was 31.8 (Range 0-14)
CRP, Cardiac was 35.03 (Range 0-3)

@Maz wrote:

If you’re really suffering, Tom, you might find you need to see a rheumy to have help with the pain. As the main breadwinner and a young Dad, it might be necessary to keep functioning until you can get to a place where you can wean off the other drugs. It’s not a failing if you need to do this and you’ve had a rough road, thus far. Who cares what a doc thinks of your past treatment choices? You are paying them and are asking for their opinion and help in the present. 😉 A pain management specialist might also be a good idea right now, as I second Suzanne that the doses you’re taking of ibuprophen are very high and, apart from creating gut issues you’ll have to repair, the systemic effects won’t do you any good in the longer term. Something like Celebrex would be preferable to mega-ibuprophen dosing.

Thanks for the recommendations.. Wish it was easy to call a doc and be like “So.. Will you work with my MD as I try to treat this in alternative ways?”

[tbird2340]

@Linda L wrote:

Tom,
Do you do any detox? Have you tried it in the past?
Linda L.

Thanks for the reply Linda! 🙂

I have a FIR Sauna that I just started back up using this week (used it the past 4 days).. But other than that, nothing..

[tbird2340]

@A Friend wrote:

Hello Tom,

So glad you are here.

Just want to clarify which protocol you are referring to that you have used and/or are currently using. There is a very excellent web site known as “Arthritis Trust” (http://www.arthritistrust.org) that does have papers by doctors about various treatments. So, being aware and somewhat familiar with this site, I’m not sure if you are referring to Dr. Brown’s protocols here on Roadback.org or Arthritis Trust. Will you clarify this for me/us (for comparison purposes)?

So glad you are here. I feel sure you can get much help/input from those who have diagnoses similar to yours.

Good luck to you,
AF

Thanks AF.. Yes, that’s the website I was referring to.. The doctor I found on Facebook was very involved with the arthritis trust.. I was going to do it through him but wasn’t comfortable with the distance.. So I go to a guy around an hour from here but he may have tweaked it (have to ask my wife)..

[m.]

Hi tbird,

I’m sorry about your pain! It is very hard to know what to do in a sea of differing opinions! We just want to feel better!

To me, your story illustrates one of the big forks in the protocol road. Does one need LESS (anti-microbials)? Or MORE? Protocols vary. It’s hard to say who is “right”.

No matter what type of practitioner you go to, you have to protect yourself from harm, and hold them accountable for their treatment plan. How does the MD know x is your problem? What tests or clinical signs will we be looking for to see I’ve improved? How will I be assured that I’m getting better (herx) and not worse?

If you cannot manage this yourself, look around your circle of friends and family for someone who will help be your advocate, to ask hard questions, and keep you organized.

It’s good to always ask for copies of your test results and geek that I am, I put them into a spreadsheet, making notes about my protocol at the time.

This is a very tough disease, and hang around the forum a bit and one quickly realizes people are actively working on diet, gut health, hormones, stress reduction, in addition to an anti-microbial protocol.

What AP physicians are getting results?

[PhilC]

Hi Tom,
@tbird2340 wrote:

So I didn’t take the ibuprofen last night for the first time in at least a year.. So yea.. I think it helps a little because last night was HORRIBLE.

Consider asking your doctor for a prescription for a different NSAID, such as celecoxib (Celebrex) or nabumetone (Relafen).

Note: People who are allergic to sulfa (sulfonamide) drugs should avoid taking celecoxib.

Phil

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

[tbird2340]

@m. wrote:

Hi tbird,

I’m sorry about your pain! It is very hard to know what to do in a sea of differing opinions! We just want to feel better!

To me, your story illustrates one of the big forks in the protocol road. Does one need LESS (anti-microbials)? Or MORE? Protocols vary. It’s hard to say who is “right”.

No matter what type of practitioner you go to, you have to protect yourself from harm, and hold them accountable for their treatment plan. How does the MD know x is your problem? What tests or clinical signs will we be looking for to see I’ve improved? How will I be assured that I’m getting better (herx) and not worse?

If you cannot manage this yourself, look around your circle of friends and family for someone who will help be your advocate, to ask hard questions, and keep you organized.

It’s good to always ask for copies of your test results and geek that I am, I put them into a spreadsheet, making notes about my protocol at the time.

This is a very tough disease, and hang around the forum a bit and one quickly realizes people are actively working on diet, gut health, hormones, stress reduction, in addition to an anti-microbial protocol.

What AP physicians are getting results?

Thanks very much for the reply.. This sentence is very important.. “If you cannot manage this yourself, look around your circle of friends and family for someone who will help be your advocate, to ask hard questions, and keep you organized.”

My mind just does not gravitate, understand, comprehend, etc anything health related.. I can’t read anything health related and have it mean anything to me.. Computers and technology? That stuff sticks with me all day.. My wife is good at it.. I just need to get her up to speed with where I’m at physically. She asks the questions that need asked.

Thanks again.

[tbird2340]

So how does everyone “track” if they are getting better? I mean, say I am “herxing”.. Are their certain blood levels that are supposed to go up / down with herxing? With things working? Etc?

I have my numbers posted from April of this year and I haven’t done anything RX wise from then until now so I would *think* they would still be relatively the same?

Thanks again.

[m.]

@tbird2340 wrote:

So how does everyone “track” if they are getting better? I mean, say I am “herxing”.. Are their certain blood levels that are supposed to go up / down with herxing? With things working? Etc?

I have my numbers posted from April of this year and I haven’t done anything RX wise from then until now so I would *think* they would still be relatively the same?

Thanks again.

I could see, in my blood work, that the numbers were inching towards “in range” and finally were in range. This was not always linear progression! Forwards, backwards, forward again. But in combination with improving symptoms, I could see I was getting better. (Editing….labs were improving)

It’s my understanding that it can be difficult to distinguish between a herx and worsening.

From the Historical Protocol (found from the main RBF page):

Differentiating between a Herxheimer, an RA flare and an allergic reaction to the drug –

Laboratory tests can help differentiate between a worsening of disease (RA flare), a Herxheimer reaction to microbial toxins, and an allergic reaction to medication.

WBC will elevate in a Herxheimer and lower in a flare.
A Herxheimer will also exhibit a coincidental elevation of SED rate, gamma globulin and total globulin, and a fall in serum albumin and hematocrit. Patients who exhibit this flare reaction accompanied by anemia, depression of serum albumin, elevated total globulin and gamma globulin are probably reflecting a more intense reaction pattern to anti-L substances than in hematologically mild cases.
A marked increase in eosinophils (for instance about 30%) is an indication of an allergic reaction to the drug.

I am apt to say, again and again, that part of the suffering is worry and anxiety and fear about the disease and making good or bad decisions.

Early on, I ended up traveling to see an experienced AP doctor. No medical miracles were performed, just a slight adjustment in my dosage. But I cannot emphasize enough what a psychological boost it gave me. When I got in the car to head home, I was a different person. Confident I was going to respond to the therapy, get to remission, and someone had my back if I hit a hurdle.

Everyone will have different financial challenges and other commitments. I encourage everyone who protests about not being able to get to a good AP physician to consider the time, money, and worry spent going from one local, ineffective MD to another, or trying so many protocols in such a short time as to not know what’s going on, what’s working, what’s not working.

It’s not easy! But sit back and think and discuss your best choices. Strategize! There are many good paths.

[Author]

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