Desparately Seeking Answers

[ThreeCrazyKids]

Hi,

I'm so glad that I found this site.  I've been reading feverishly.  Please read my info and help if you can.  I could definitely use the help.

Last year, out of nowhere, I got sick.  I went to doctors, stayed in the hospital…Most everything was uncertain.  I ended up with a Rheumatologist who told me I may have Still's Disease (adult onset Juvenile Rheumatold Arthritis).  I was also told it might be Rheumatic Fever…or a virus…lymphoma….early autoimmune problems…  Noone knew.

Labs for Lupus and RA were negative.  Strep was positive.  Lyme was positive.  SED rate remained over 100!  Unbelievable joint pain, flu-like symptoms, fever, chills,rash

I ended up seeing a LLMD (Lyme Specialist).  Antibiotics were used (Doxy, Amox) which led to a remission in a few months.

Four months later, a complete relapse.  All symptoms came back.  Antibiotics were started (high doses) and immediate herxing began.  Antibioitcs were changed and more herxing. 

The main problem that was present was this SED rate (over 100) and the swelling and inflamation.  LLMD gave me two weeks of prednisone (although not ideal) because the inflamation was way out of control.  I am weaning off and have another week or so.  It has taken the inflamation away.  I'll run labs next week.

LLMD says that the bacteria is causing the immune response or the effects of the die off (herx) is causing the inflamation.  The prednisone may now have opened up the way for the antibiotics to work or the whole process may start over again as soon as I start the antibiotics again (about 10 days)

He suggested lower doses and pulsing.  He still wants to go after co-infections.

I found this site and I am wondering if there is something to this AP that will fit in with the Lyme. 

Is it possible that I did trat the Lyme and now I am left with this inflamation response that needs treating?  Could the Lyme protocols be too much causing too much herxing causing too much inflamation?

I go to a well respected LLMD but now I am wondering if I should seek out a local Doc who doea AP.

Has anyone any experience with these issues?

Blessings,

ThreeCrazyKids

[Maz]

[user=557]ThreeCrazyKids[/user] wrote:

He suggested lower doses and pulsing.  He still wants to go after co-infections.

 

Hi ThreeCrazyKids,

Welcome and thank you for sharing so much. Big YES!  I can relate. Your story is very similar to mine, too. Please read my Progress Thread and you might find there are many parallels.

http://www.rbfbb.org/view_topic.php?id=301&forum_id=3

Your LLMD has suggested lower doses and pulsing. I've been doing this since December and have been doing very well on this protocol (which is a long term protocol). As I understand it, it's very important to keep hitting those coinfections, as your doc said, and it's so great that he's open and willing to allow you to try low dose pulsing. I'm also very fortunate to be able to see a very well-respected LLMD here in CT and, as far as I know, I'm his first patient to try this particular protocol…his test case.

Just as you described, the high doses of antibiotics caused unbearable herxing for me, which in turn caused increased levels of inflammation, especially in the beginning. Although my inflammation markers gradually started coming down after the first few months, during the latter part of my first year of treatment, I found that I was becoming hypersensitive to these high doses of combo abx and I'd plateaued in my treatment in spite of changing up the protocol on a regular basis (and maybe even partly as a result of the changes).

Minocycline has some great anti-inflammatory properties that has seen me improving steadily since beginning it (see doses below in my signature line) and I pulse in azithromycin once every 10 days. I still herx, but the herxing is much more controlled and has lessened with time. It's very much been a case of “less is more” and I think Dr Brown was very accurate in his conclusion that rheumatoid patients tend to present with a hyper-allergenic response. This may (or may not) be different for those who manifest Lyme more neurologically, but for those of us who have had Still's, RA or palidromic forms of RA triggered as a result of Lyme, the hypersensitivity response seems to be exacerbated, especially in more severe cases.

You'll find there are a few of us here with RA triggered by Lyme and a lot of great info is shared between us!  So happy you found this site…it's been a life-saver for me and the people who come here are all so wonderful and supportive.

Peace, Maz

 

 

[ThreeCrazyKids]

Maz,

Thank you so much for your reply.  My LLMD just suggested about two weeks ago that the Lyme (or co-infection) is causing the “rev-up” of my immune system leading to the inflamation.  I've been researching feverishly and I was coming up with a similar theory.

Prior to being diagnosed with Lyme, the local Rheumys all settled on the possibility of Still's Disease.  Honestly, though, it just didn't fit completely.  Although, there were certainly components that fit.  The treatment was a lot of different immuno-suppresive drugs and I was not willing to go that route on a “guess” from some doctors.

The only positive test was Lyme.  Honestly, that did not feel right either.  However, I was positive.  I took antibiotics.  I herxed.  I got better.  So, I figured it must be right.

Then, relapse.  Fast and hard.

So, now I am uncertain how the two therapies can fit well together.  LLMD feels the need to combine ABX and hit all stages/co-infections.  AP seems like it would not be “enough” for the Lyme.  However, each drug is causing herx/inflamatin patterns that are too much.

I was on 2 weeks of Prednisone for my SED/inflamation (120 last check).  I started on 60 mg and made it down to 10 mg as of today.  It was about 1 1/2 weeks.  The goal was to be off of it in 3 days.  However, at 10 mg, I am inflaming again.

Do people stay on Prednisone during AP?  I do not want to.  LLMDs are not fond of it, obviously.  However, the inflamation isa big concern.

Oh,  which lab is the “right' lab for microplasma testing?  Can local labs run the tests or is it like the WB and labs like IGENEX are the way to go?

 

Thanks!

ThreeCK

 

 

 

[Maz]

Do people stay on Prednisone during AP?  I do not want to.  LLMDs are not fond of it, obviously.  However, the inflamation isa big concern.

Oh,  which lab is the “right' lab for microplasma testing?  Can local labs run the tests or is it like the WB and labs like IGENEX are the way to go?

 

Hi 3CK,

If you go to the A&E website, the show Intervention covered the story of a young woman, Brooke (Episode 53) who was diagnosed with Still's Disease. Very afraid of the diagnosis and pain, Brooke became addicted to pain medications, which is essentially the show's focus. However, after doing much research on her daughter's behalf, her mother got her bloodtested for Lyme, for which she was positive. By this time, sadly, Brooke was too far into her addiction.

http://www.aetv.com/intervention/int_episode_guide.jsp

I was struck deeply by this episode, because this young woman's misdiagnosis had led to her chronic pain syndrome, her addiction (going to a number of docs for different pain meds) and deformed joints. Just thought you might be interested as you have also been down this same diagnosis path, but just very fortunate to have made the link to Lyme very early on. The pain of Lyme/RA/Still's is excruciating and poor ol' Brooke can't be blamed for her addiction and, though I am tentative to point the finger at her rheumy, I think this episode clearly showed the need for testing to be done for infectious causes to these diseases.

Okay….mini-rant over…:roll-laugh:

Your LLMD sounds like a smart guy and, based upon my own experience of Lyme and how it affected me so quickly, I wholeheartedly agree with him that the infection does ramp up the inflammation very quickly.

Joe M posted a great news article, found on WebMD about an emerging, very virulent strain of Lyme. This finding will be published in July's issue of ] It's not that this strain of Lyme is new…however, they have only recently identified it here in the states, connecting it to some of the more severe cases of Lyme. 

 

Relapses are very common in Lyme. In fact, a recent study published in early March of this year by a guy called, Barthold and his research associates, found that in mice studies, where mice were intentionally infected with the spirochete and given IV ceftriaxone, although their blood serum tested positive at the beginning of the study and negative at the end, they still found the spirochete persisted and had gone deeper into the collagen tissues. I am currently reading Pam Weintraub's new book, “Cure Unknown – Behind the Lyme Epidemic” and, after interviewing Barthold, discovered that further tests showed that even when the mice tested negative for Lyme, after treatment, when the grafted skin from an infected mouse to a non-infected mouse, the non-infected mouse quickly became sick with Lyme. This guy has apparently done similar studies with apes and found exactly the same thing. Here's the study%;”>]

I completely understand your concern about the inflammation. It's been my biggest concern, as well. The unfortunate thing about prednisone, is that while it may afford palliative relief, it suppresses the immune system and inflammation response so effectively that the underlying infection is given free reign to persist and proliferate. It's a catch-22…does one suppress or not suppress? I chose not to take prednisone, because of my LLMDs warnings against it. However, Dr Brown was not averse to using small amounts (5 or maybe 10 mg) to palliatively treat his rheumatoid patients to reduce the inflammation just enough to allow for better penetrance of the antibiotic into the joints. Inflammation, while being the body's natural defense against infection, also puts up a kind of barrier of inflammed, fluid-filled, scar tissue, which can prevent antibiotics getting into the places it needs to to effectively do its job. My LLMD's argument, however, is that inflammation also increases blood flow to the area, so this may indeed not be true. So, to palliate or not to palliate? I don't know the answer to this and it really has to be a personal decision made with your doc and dependent on your need to function. I'm assuming you must have 3 crazy kids, so this may greatly influence your decision on this…and who could blame you? ]

As for trying low dose pulses, such as the ones used in AP, I also don't know if this will be better for you than the higher doses that elicit such heavy herxing. While herxing is a good thing, too much herxing increases inflammation, too, especially in the early months, as was my own experience and exactly how Dr Brown describes it in The New Arthritis Breakthrough. ]

I think the thing is that we are both dealing with an infection that is now proven to persist after the standard courses of treatment. Chronic Lymies are now being vindicated by the science and, no matter how much the IDSA kicks and screams and puts their fingers in their ears, going la-la-la-la, chronic Lyme patients are not going to go away. In fact, reported cases are going up and, more and more people, like you and I, are experiencing extreme reactions to what is no doubt a very virulent strain of this pathogen and its lovely coinfections. ]

How I've personally found low dose pulsing to work for me is that I spent a year doing what I could to hit the coinfections with heavy combo doses of various antibiotics, anti-protozoals, anti-fungals and a cyst buster. However, in spite of my inflammation markers gradually improving, my hypersensitivity reaction ramped up…again, much as Dr Brown described. I tried Minocin at the 100mg twice daily dose and just couldn't handle the herxing anymore. So, my LLMD has agreed to let me try low dosed, pulsing with mino and zith and this seems to be enabling me to continue my improvements (though glacial) while my inflammation levels are kept at bay.]

I can't claim to have all the answers on this, but AP does seem to be working for me and I can't help but wonder if it might have done me better to have started earlier. It's till hills and valleys, but the herxing is more controlled and is diminishing in intensity over time. Minocycline is definitely a superior tetracycline in terms of providing greater anti-inflammatory relief, so you may find you do better on this antibiotic in combo with anything else your LLMD advises you to hit.]

For mycoplasma testing info, you might like to take a look at this site%;”>][/size]

3CK, hope some of this helps in some way. I'm not a doctor and only a patient, like yourself, but we can certainly find comfort in information swopping and you've found a great place to do this! It's also a great resource for learning about detox methods to help the body get rid of the toxins released during pathogen die-off, which relieves the effects of herxing.]

Peace, Maz ]

PS There may be alternative anti-inflammatories you can try adding in to see if they help. I use digestive enzymes – natokinase and serrapeptase, both proteolytic enzymes that help cut inflammation. Also, I've started using NAC, grapeseed extract and lipoic acid every day…all with anti-oxidative properties to help cut inflammation, as recommended by a well-respected AP doctor who brought his own RA into remission.

PPS. Something has happened to the html script thingie…sorry for all the odd characters in the text. Hope it's not too difficult to wade through.

 

[ThreeCrazyKids]

Thank you so much for the response.

That was a sad story about the girl with Still's.  I could not view it all but I got the jist.  Doctors were so willing to give me immune suppressing drugs and pain killers.  It's quite sad.

I still don't think I understand completely how I can knock out the infections with Lyme/co-infections and still not send my body into inflammation prison.  We tried it for 8 weeks (this time since relapse) and I felt like I was dying.  Literally, I could not walk with out assist and I was shaking, chills, high fevers every day.

I am not adverse to “fighting it out” but I cannot avoid the fact that my LLMD said that I needed 2 weeks of steroids.  It was not ideal, but I did it.  I am withing a couple of days of weaning off.  Yes, I have three small children who are home ALL day.  They keep me quite busy.

I have a phone consult with him on Friday.  Any insightful questions that I could ask him?  He is willing to listen and quite humble. 

Is there a particular anti-inflammation diet that has helped you? 

Thanks!

 

3CK

 

 

 

 

[Maz]

[user=557]ThreeCrazyKids[/user] wrote:

I have a phone consult with him on Friday.  Any insightful questions that I could ask him?  He is willing to listen and quite humble. 

Is there a particular anti-inflammation diet that has helped you? 

Hi 3CK,

I know how you feel – I've been there, too, with every movement (even eating) creating paroxysms of pain…it's such a delicate balancing act between getting some amount of herxing going and keeping it tolerable. Pretty much every LLMD advocates high continuous dosing until symptoms resolve, sometimes using long pulses (2 or three weeks of continuous dosing) with 1 week washout breaks. The protocols are many and varied. Maybe I'm a complete freak, but I decided to fight it out. It took a good 3 months of worsening, and miniscule improvements after that, until I moved onto low dose, pulsed AP at about the year one mark.

Any suggestions for your phone consult?

Well, assuming the importance of keeping up the assault on the coinfections while controlling your herxing and level of hypersensitivity, you could ask him how he feels about low dose pulsing with minocycline and if it would be okay to try this as a test to see how you go for a few months….in addition to any additional meds he thinks necessary.

You could also ask about biaxin (clarithromycin) at the usual high daily dose needed for Lyme might also be a good addition to minocycline. It's effective for Lyme, as well as there being a number of studies on its use and efficacy for RA. I had good improvements on a combo of biaxin and tetracycline. Azithromycin is another good antibiotic that could be used insteadof biaxin, also in the macrolide class of antibiotics, and may help to bring your strep titres down if they are still an issue….though being a bit stronger in its actions some AP docs prefer to use low dose pulsing with this one.

Also, plaquenil (an anti-protozoal designed to treat Malaria, also a protozoan infection like babesia). It can take a few months to fully kick in, but it might help with inflammation in the early days (it's a pretty standard rheumatoid DMARD), but my LLMD also uses it as a Lyme cyst-buster (cysts being the dormant spirochetal form). It's one of better tolerated DMARDs, but you do need to have your eyes tested every 6 months. Once over the worst of the inflammation, it can be tapered to wean off.

These are just some possible suggestions to ask your doc, though I know you'll appreciate that every person's situation is different and it's all a bit of trial and error. 😉  Lyme docs prefer to change up the protocol on a regular basis to keep the bugs running.

Aside from the other anti-inflammatory supplements mentioned in the PS above, there are things you can do to detox to clear out the toxins from die-off faster, which helps keep down the inflammation, too. These include the lemon/olive oil detox drink, epsom salt and peroxide baths (see Lynnie's post today with directions on how to do this), gentle exercise to increase lymph flow, sauna, keeping the bowels moving regularly and lots of lots of water.

As for diet, probably the easiest way to start is to cut out unnecessary sugars and carbs, dairy and gluten while upping your intake of fresh fruit and veggies, raw is best, but steamed is okay, too, for variety. I eat small amounts of chicken and fish (never was a big meat-eater) and sticking to good fats, like first cold pressed extra virgin olive oil, coconut oil, avocados and limiting nightshades, like green peppers, tomatos and potatos. There are a lot of good dietary suggestions here on the board, so this is something you can do searches on and build over time, but best not to get too overwhelmed in the beginning. You have a lot to deal with, cooking for your small children, too, so added stress, worrying you have to do it all, might just add to your overall pain. Just be sure to keep up your probiotics, too, which are so important for supporting the gut while on antibiotics and keeping yeast at bay.

Hope some of this helps and do hope your phone consult goes well. finding some solutions with your doc to help you through! Let us know how it all goes for you.

Peace, Maz

 

 

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