AP, Lyme, Benicar

[Trudi]

This is my first time posting, although I have been checking the board daily since mid April.  I would like to share my story in hopes someone will also be helped as I have been helped (educated) with all of your posts.

I?ve been dealing with chronic joint/muscle pain for the last three years.  Because my RF was elevated, my internist wanted to put me on methotrexate.  Unwilling to do so, I started seeing an NP.  She concurred that my RF was elevated, but would try other methods to keep me comfortable.  For the next 2+ years I alternated between Aleve, Indo, Ibuprofin, hydrocortisone, a variety of supplements and for a time, bioidentical hormones.

In April, I saw my doctor and requested narcotics.  The pain had gotten the better of me.  I also asked the doctor if she had ever heard of the antibiotic treatment for RA.  I came across it in my Internet search for RA.  She hadn?t but said she would research it.  By the afternoon, she called back that it was worth a try and started me on Minocycline ?100 mg. 2x a day.  I felt so much better after the first dose, I have not needed to fill my narcotics prescription. Even though my joint pain was worse during the day, I was no longer bothered at all during the night.

After about three weeks taking Minocycline every day, I decided that to kill off the bacteria and hopefully keep any yeast infection at bay, maybe I should pulse the dose, so I went to the MWF 100mg bid dosing.  Along with the joint pain, I now had a lot of fatigue. 

After being on the Minocycline for I think it was a week, I noticed a circular rash on my right lower leg.  A few weeks after being on the pulsing dose, I developed a rash on my upper body and tiny red dots (petechia) on my legs.  My doctor diagnosed me with Lyme disease.  She said often times when Lyme treatment begins the rash and the bulls-eye surface.  She said that even a tick can surface (confirmed by a neighbor whose Lyme was treated in its later stage).  I had a tick bite about four or five years ago that I went to the emergency room for because I didn?t know if I got the head out and a red line was coming from the bite.  The doctor at that time treated me with antibiotics for I think about 2 weeks.  I am currently on the 4-week doxycycline.  

Lastly, the MP treatment with Benicar is discussed on this board.  I actually was on Benicar for high blood pressure for 10 months in 2005?the year my joint pain became chronic.  In fact, I reported Benicar to the FDA as an adverse reaction and contacted Sankyo to tell them about it.  The information from the pharmacist eventually included that this medication can cause joint pain, swelling, and stiffness after sufficient amount of people had problems with it.  I am guessing now, that I was herxing!!

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]

Hi Trudi,

Thank goodness for your very astute doctor picking up your Lyme!!!!!!! Sounds like you got to the chronic stage and another good reason why the short course of antibiotics is not enough to treat Lyme Disease, even when caught early in some instances.

The “red line” you mentioned had me thinking about the Lyme coinfection “bartonella” or cat scratch disease, which can present as red streaks. Have you been tested for coinfections, at all? Just wondering.

Someone on MP may be able to elaborate on the benicar, but I believe in the doses normally prescribed for hypertension, these are quite a bit lower than the doses used for MP. As I understand it…and I'm no expert on MP….benicar is actually used to lower the immunopathology response (herxheimer reaction) and to potentiate (increase) the effects of the antibiotics….which are normally quite low in dose, as a result. So, not sure if the benicar would have been a herx or not, but John or another MPer should be able to elaborate further on this.

Definitely, the prednisone you were on would have made your situation worse and so glad you didn't get pushed into using methotrexate, both of which would have made your situation much, much worse. Most LLMDs agree, prednisone use and immunosuppression in Lyme is a big no-no, just allowing the organisms to further proliferate…especially in the doses normally prescribed.

Thank goodness you found your way to a proper diagnoses and treatment now…you're well on your road back!

Peace and welcome, Maz

[Trudi]

Hi Maz–

I actually am taking 5mg of hydrocortisone a day.  Looks like I should stop ASAP.  My doctor said it was OK to continue.  When my son got married in late 2005 I took Prednisone to get me through the wedding; I was on it less than a week and the rebound was awful.  Then when my daughter got married in late 2007, I asked for the hydrocortisone because I had heard it was about a fourth of the strength of Prednisone.  I started taking it again in April when I started the AP therapy–we'll see how I do when I stop.

I haven't been tested for coinfections.   My doctor did mention that I will probably be on more antibiotics after this course–flagyl being one of them.  I will ask her to check for the bartonella at that time.

Thanks for the time you and the others take in sharing your knowledge.  You are all amazing!!

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?

[Michele]

Trudi,

Thank you for sharing your story!! Maz is right! You are so fortunate to have a doctor who understands Lyme disease!!! It's really interesting to hear how the rash re-developed as a herx.

I'm a new MP-er and have not been on the Benicar Blockade long, but taking the MP dose of Benicar has decreased my inflammation and pain. I was on this board a lot asking for help with pain for many months. (Thanks for all the support everyone!) Now, I rarely take any pain medicine because my pain is low and manageable. There are several things that may contribute to this, but regardless, I am ever so grateful. Maz is correct, that the Benicar functions completely differently at a minimum dose of 3-40mg tabs a day. I take 4 a day just so I can get 8 hours of uninterupted sleep. Though I am certainly sleeping more. I'm making up for all those weeks last fall when I couldn't sleep for more than a couple hours a night! 😀

It is interesting that your experience on the blood pressure dose was to herx. My mom has a blood pressure medicine that makes her feel worse and I think she's herxing.

I'm so glad you found out a legitimate diagnosis! It is so crucial for proper treatment.

All the best!
Michele

[JBJBJB]

[user=442]Trudi[/user] wrote:

I actually was on Benicar for high blood pressure for 10 months in 2005?the year my joint pain became chronic. 

I was on Beta Blocker for my high blood pressure. I was on it for only three weeks, all my big joints and muscle pain started and got worse. I could hardly walk, raise my arms. I used to swim (45 laps 3 or 4 times a week). All the muscles (including my hands) I used to swim were burning hurt. I was told I got drug induced Lupus or Mixed Connect Tissue Disorder. :crying:

I am glad you reported it to the FDA. Perhaps I should do the same. JB

 

[Trudi]

Michelle–

I was on 40 mg of Benicar a day.  After reading about Benicar and Lyme disease in the following excerpt from Dr. M's book–I didn't get the impression that there was a minimum dose–only that you can get some pretty good herxing if used as a monotherapy–http://www.lymebook.com/Marshallexplanation.htm.

JBJBJB–

I am currently on a Beta Blocker.  When I talked to the representative/pharmacist at Sankyo, he said that Beta Blockers are also known for causing joint pain.  My goal is to eventually be done with it.  So far I've reduced the dosage by 1/2.  I don't think I'll ever know if the Beta Blocker continued to give me joint pain after I stopped taking the Benicar.

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]

[user=442]Trudi[/user] wrote:

I actually am taking 5mg of hydrocortisone a day.  Looks like I should stop ASAP.  My doctor said it was OK to continue.  When my son got married in late 2005 I took Prednisone to get me through the wedding; I was on it less than a week and the rebound was awful.  Then when my daughter got married in late 2007, I asked for the hydrocortisone because I had heard it was about a fourth of the strength of Prednisone.  I started taking it again in April when I started the AP therapy–we'll see how I do when I stop.

I haven't been tested for coinfections.   My doctor did mention that I will probably be on more antibiotics after this course–flagyl being one of them.  I will ask her to check for the bartonella at that time.

 

Hi Trudi,

Just did a little research and does seem that hydrocortisone is about 1/4 the strength of prednisone, as you say, also used as an immunosuppressant, in the corticosteroid family of drugs. In “The New Arthritis Breakthrough,” it's mentioned that Dr Brown would sometimes use small doses (about 5mg of prednisone) to help patients over the worst of their herxes, as a very short term palliative. Some Lyme docs may also use these small amounts, but mostly they avoid it altogether, as any form of immunosuppression is generally felt to exacerbate the disease, allowing the pathogens free reign.

Lyme is a horribly painful disease when it becomes chronic, especially in those who are immunologically compromised. So, try not to be too concerned, if you just can't cope without it, as it does sound like a very low dose you're on. Worthy of note, it's never advisable to suddenly stop a corticosteroid cold turkey. It's why they use taper packs for prednisone, because the adrenals shut down when on replacement therapy (over long periods of use, the adrenal glands can actually atrophy) and we wouldn't be able to survive without some amount of cortisone, natural or medicinal, in the body. Coming off these drugs should always be done under medical supervision….I'm sure you're already well-versed on all this, but just felt it was worth a mention. 😉

The rebound you experienced from coming off prednisone is pretty typical for Lyme and many with infectious causes for rheumatoid disease, because the bugs have been partying with our natural defenses switched off. When the immune system is switched back on again, it may well be that there is an amount of die-off that occurs and a resulting herxheimer reaction. Tissue hypersensitivity is heightened by the release of toxins and voila…a mega-flare.

Flagyl is a powerful anti-protozoal medication and sometimes used to target the Lyme co-infection babesia, a protozoan (plaquenil is also an anti-protozoal and targets the cyst forms of Lyme, originally designed as a malaria treatment…also affords some palliative relief as a DMARD).

Bartonella henselae (cat scratch disease), I understand, is the one that can cause red streaks on the skin. From all the literature on it, it's described as “a self-limiting disease” that resolves on its own, but like a lot of these pathogens in immune-compromised patients, would likely need longer treatment, but a good LLMD would know best. Anyway…definitely worth mentioning the “red line,”if you haven't already to your doc, as evidence to test for bartonella.

Just so good you have such an astute doc who is also open to chronic Lyme treatment….that's a real gift!

Peace, Maz

[Michele]

Hi Trudi,

Just to clarify the Benicar information a bit…I looked at the link you provided and it is someone else's synopsis of the Marshall Protocol. Bryan Rosner's perhaps? It isn't Dr. Marshall's writing because he doesn't advocate rife machines. I couldn't find the citation. The author of the link lymebook.com/Marshallexplanation.htm was not citing the protocol as found on the Marshall.com website. In fact, whoever the author of this article is even admits that they do not site the official information. Near the end of this chapter the author states, “Some of the information presented above about Benicar is my personal interpretation of the available data on this treatment.” If you want the accurate information, do follow the author's own advice and look directly at the MP site.

If you were only taking Benicar at 40 mg a day, you were not on the MP or receiving the palliative benefit of Benicar as intended in the Marshall Protocol. Though, indeed, you may have been herxing!

It sounds like you have a great doctor that is Lyme literate, and you'll be able to find a protocol that fits your particular needs and lifestyle!

All the best,

Michele

[John McDonald]

Someone on MP may be able to elaborate on the benicar, but I believe in the doses normally prescribed for hypertension, these are quite a bit lower than the doses used for MP. As I understand it…and I'm no expert on MP….benicar is actually used to lower the immunopathology response (herxheimer reaction) and to potentiate (increase) the effects of the antibiotics….which are normally quite low in dose, as a result. So, not sure if the benicar would have been a herx or not, but John or another MPer should be able to elaborate further on this.

Wow Trudi. You have done a lot of research and experimentation.  Good job!

Maz, it was adverse effects reports like Trudi's that made the early Marshall folk look at ARBs in the first place. They would see reports from sarc patients that their ARBs were making their sarc worse. That was before Benicar was introduced but Marshall wondered like Trudi if rather than an adverse effect, that it might be a herx! The current version of the MP calls for very high doses of Benicar to provide palliation. Low doses are said to cause herx alone, but higher doses are said to give herx plus palliation. At low doses (20mg TID) the benicar primarily elicits herxing by docking with the VDR receptor. At higher doses (40mg Q6h) Marshall posits that the Benicar docks to other nuclear receptors hence bringing relief from the herxing.

[Trudi]

John–thanks for putting Benicar into perspective.  I'll pass this on to my doctor.  At the “height” of my Benicar experience, I couldn't stand more than 5 minutes at a time my ankles and feet hurt so terribly.  I started experiencing the same pain again while pulsing Minocycline–but it did get better.  Since I still need BP medication I'm kind of tempted to try it again–my husband will probably think I'm nuts :)–

Maz–my doctor is very open to patient input–a real breath of fresh air–I'm going to print up these posts (or maybe email her the link) instead of trying to explain all the advice–you all have so many facts at your fingertips.  BTW, I read that you can stop the hydrocortisone, even Prednisone, if taken less than 3 months.  I didn't take it today–feel pretty good–we'll see what tomorrow brings.  My every other day seems to be off–yesterday was not good at all–today I even did gardening.  It might be 'cause I do a little more on my good day and pay for it on my next day?

Michelle–I'll have to be more careful regarding who authors the information.  I'll try and go back into my history and see where it originated.  If I find it I will let you know.

I am so grateful for all your input and advice. 

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]

[user=3]John McDonald[/user] wrote:

Low doses are said to cause herx alone, but higher doses are said to give herx plus palliation. At low doses (20mg TID) the benicar primarily elicits herxing by docking with the VDR receptor. At higher doses (40mg Q6h) Marshall posits that the Benicar docks to other nuclear receptors hence bringing relief from the herxing.

How interesting that benicar elicits herx at low dose and not at high dose. Thanks for the explanation, John. 😀  Thought I'd heard something about this in the far reaches of my sometimes foggy, erratic brain cells, but not the science behind it.

Peace, Maz

[Maz]

[user=442]Trudi[/user] wrote:

At the “height” of my Benicar experience, I couldn't stand more than 5 minutes at a time my ankles and feet hurt so terribly.  I started experiencing the same pain again while pulsing Minocycline–but it did get better. 

Maz–BTW, I read that you can stop the hydrocortisone, even Prednisone, if taken less than 3 months.  I didn't take it today–feel pretty good–we'll see what tomorrow brings.  My every other day seems to be off–yesterday was not good at all–today I even did gardening.  It might be 'cause I do a little more on my good day and pay for it on my next day?

Hi Trudi,

Boy, do I know that feeling of standing for any length of time! :sick: I spent the first half of last year just about making it to the bathroom and just standing for a few mins was an exercise in grinning and bearing it. :crying:

Good for you getting out to garden! My knees aren't up to the bending and kneeling yet and tick season is rampant here, right now. I plucked one from my scalp about a month ago and I'd only been out to walk up the drive to get the mail! We have pets, though, so maybe one of them brought it in and left it on the furniture…lovely, eh?  My hubby and I do 'tick checks' now whenever he's been out mowing and, for the sake of “marital harmony,” as John put it in another post, he hops right in the shower.

Yesterday, a little white tail wood mouse (a carrier of Lyme) followed me into the garage and I couldn't get it out, shooing it with an umbrella. Must have been a comical site! One could really get paranoic about ticks after such an experience, but won't let it stop me enjoying my life now that I'm getting it back! :roll-laugh:

Peace, Maz

[Trudi]

Hi Maz–

The extent of my gardening is sit and bend or just plain stand and bend.  My knees are not good at all right now.  The knee joints were the last to give me grief.

During the winter I usually saw no less than 7 deer congregating in the back yard.  I'm not too anxious to spend a lot of time outside–with having to avoid the sun being on doxy and hoping not to encounter a tick–but 'tis the season and my flowers need planting! 

BTW, whenever I see your picture, I am reminded of a friend–you could easily be twins!

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]

Hi Trudi,

You wouldn't believe how many people say that I remind them of someone they know! I must have a very common-looking, generic sort of face. :roll-laugh: Although, that pic was taken just prior to getting so ill, so I have put on a bit of pudge around the ol' chin and chops….not to mention the mid-section (cough!).

Yea, needs-must with the gardening. I used to keep up the flower beds, but last summer we decided to uproot all the perenial flowers and just left the shrubs. Makes maintenance much easier…just a bit of weeding when it pushes through the mulch. Oh well, what can you do, except be tick vigilant. :headbang: Always used to say I'd love to have my own fenced in (for deer and rabbits) organic veggie garden…never mind, one day yet it might be a reality!

Peace, Maz

[John McDonald]

Maz, any amount of Benicar can elicit a herx, at least by the MP lights. Marshall's theory is that the bacteria disable the VDR (vitamin D receptor) with a chemical that fits like hand in glove, but which fails to activate it. So the regular signaling chemicals cannot dock to activate it. But Benicar, made for an entirely different receptor, also fits the VDR quite well but DOES activate it. This is on a cell by cell basis mostly in the macrophages. That leads to microbial destruction which leads to inflammation and pain. But all of these nuclear receptors evolved from similar origins. Evolution is conservative that way. It seldom invents something new.  Mostly it reworks extra copies of something else. So a molecule that docks to one receptor brilliantly may also dock with other receptors, usually not so well but it can. So Benicar was designed specifically to dock to the angiotensin II receptor to control blood pressure but now is found to dock as well or better to the VDR. The VDR wasn't even known to science when they designed Benicar. Well likewise Marshall posits that Benicar also docks to some of these other receptors that get involved in pain and inflammation so WHILE it is eliciting herxes, it is also palliating them. My experience is that if I am eliciting mild herxing then extra benicar doesn't do much for me. But if I have elicited to d___ much herxing then an extra benicar does indeed seem to help. For me extra benicar isn't all that reliable so I just try to make sure that I don't get too much herx going. But some MP patients have found it to work just as claimed. But the point is that a little Benicar elicits a herx and so too does a lot of Benicar. Except a lot of Benicar also mitigates a herx.

I usually pick up one or two ticks a year out here in the California chapparal.  I once had one fly with me to Tucson before I discovered him.  I now don't worry so much about them. I figure I am “pretreating” any future lyme.  Then again, in Connecticut where you live the ticks are big and plentiful. I hear one filling station in CT put 17 gallons of gas in a tick before they realized their mistake. They're big there!:shock:

[Author]

Posts