hip pain/rh arthritis

[MMW]

Hello and Merry Christmas all!
So this past year I killed all my parasites by using a protocol close to Dr. Klinghardt’s which I found online. (Several rounds of several different meds).
A yr ago I started watching my iron since it kept coming back high. Couldn’t fully understand why ferritin was not high, though until iron disorder institute said I was iron avid. When my TS% came back at 83% and it had an ALERT label I decided to pay for a DNA analysis test …..and tested positive for 2 genes of hemochromatosis. So I am starting to monitor my levels through bi monthly blood draws.
So no parasites, iron going down and then….Boom! One month ago I got this horrendous hip pain and could hardly walk. It’s been there since, and I have to hobble sometimes to walk. It migrated to the back of my leg behind my knee. Never had joint pains like this before.
So my AP doctor tested my RHEMATOID ARTHRITIS FACTOR with and RA Latex Turbid test. It came back high at 15.5. Starting minocycline at 100mg a day and using the questionable Ranbaxy brand. My dr said I could choose this or doxycycline at 100 mg 2x a day.
My question is ….
1. what tests should I get on a continuous basis to monitor RH Arthritis?
2. Is this a conclusive test for rh art….RA LATEC TURBID?
3. How does one differentiate between reactive arthritis and rheumatoid….are they both the same?

Thanks,
MMW

[Maz]

@MMW wrote:

Hello and Merry Christmas all!
So this past year I killed all my parasites by using a protocol close to Dr. Klinghardt’s which I found online. (Several rounds of several different meds).
A yr ago I started watching my iron since it kept coming back high. Couldn’t fully understand why ferritin was not high, though until iron disorder institute said I was iron avid. When my TS% came back at 83% and it had an ALERT label I decided to pay for a DNA analysis test …..and tested positive for 2 genes of hemochromatosis. So I am starting to monitor my levels through bi monthly blood draws.
So no parasites, iron going down and then….Boom! One month ago I got this horrendous hip pain and could hardly walk. It’s been there since, and I have to hobble sometimes to walk. It migrated to the back of my leg behind my knee. Never had joint pains like this before.
So my AP doctor tested my RHEMATOID ARTHRITIS FACTOR with and RA Latex Turbid test. It came back high at 15.5. Starting minocycline at 100mg a day and using the questionable Ranbaxy brand. My dr said I could choose this or doxycycline at 100 mg 2x a day.
My question is ….
1. what tests should I get on a continuous basis to monitor RH Arthritis?
2. Is this a conclusive test for rh art….RA LATEC TURBID?
3. How does one differentiate between reactive arthritis and rheumatoid….are they both the same?

Thanks,
MMW

Hi MMW,

Sorry to hear about your hemochromatosis diagnosis, but the good news is that this is very manageable with regular blood draws and monitoring of serum ferritin levels. It’s an often overlooked diagnosis, but most often becomes apparent in younger men and women when they reach menopause. It’s a hereditary disease (I have a half brother who has it) and is often misdiagnosed as a rheumatic disease, because iron overload symptoms cause joint pain (and other health issues) if left untreated. RF (rheumatoid factor) can also be elevated in hemochromatosis, which can confuse the picture. Yours is very low (below 14 is normal)…folks with RA can have a RF in the hundreds. Here’s a case study of a 71 year old gent with hemochromatosis who had a comprehensive workup that also revealed an elevated RF and early misdiagnosis of RA:

http://www.researchgate.net/publication/11665572_Hereditary_hemochromatosis_masquerading_as_rheumatoid_arthritis

The RF (rheumatoid factor) test is not conclusive for RA, because it can be elevated in any number of conditions, including infections, but just as a matter of course in some folks as they age. It is the full clinical picture (labs and bilateral joint involvement) that will assist a doc in making a diagnosis of RA. RA tests include anti-CCP, RF, occasionally positive for ANA (homogenous), and inflammation markers for SED and CRP. Some RAers are seronegative for RA, but these cases can’t be definitively defined as RA as sometimes it’s reactive arthritis/spondylarthropy that has been missed….or an infection, like Lyme. Early rheumatic disease manifestations can be tricky to definitively diagnose as labs don’t always become apparent till later.

This isn’t to say that you don’t have RA or another rheumatic disease, because I’m just a fellow patient and wouldn’t know, but without typical symptoms of RA, it’s unlikely it is RA and more likely to do with the effects of hemochromatosis and calcium pyrophosphate deposition in joints, which can cause severe joint pain along with a slew of other iron-overload symptoms. Iron is toxic to the human body and so this is why the blood draws are essential and serum ferritin levels monitored, but this also isn’t to say that a tetracycline wouldn’t be helpful…this class of antibiotics is chelative in action and would bind to iron in the blood and tissues. However, with iron overload, there is a greater risk of experiencing the effects of significant skin hyperpigmentation due to iron deposits in the skin.

They know that hemochromatosis patients will have the genes for the disease from both parents, because it is a genetic disease and there are different sub-types of it. Do you know which type you have?

I think if I was in the same situation, I’d be researching chelation to help rid my body of iron and other potential heavy metals. If I had chronic infections, I’d probably be looking at a different class of abx, just because of the risk of hyperpigmentation from tetras. Probably would also get an HLA B27 test, just to check for proclivity to spondylarthrophy, as well as the other RA labs mentioned above.

http://www.ncbi.nlm.nih.gov/pubmed/8436641

Sorry not to be much help, MMW. You’ve probably researched all this to death already and nothing above is new to you. Hemachromatosis, though, is very manageable, once diagnosed (the biggest challenge as it’s not always checked in routine labs) and, although rheumatic-like symptoms come with the diagnosis, it’s not strictly a rheumatic disease, but a genetic blood disorder.

Hope you and yours had a lovely holiday season and that you find your answers to achieve relief of symptoms soon! Klinghardt uses chelation protocols…have you checked into these yet? The chelation protocols for iron overload are quite specific, though.

[MMW]

Thank you Maz,
Your return post was way helpful! I had studied much on HH but did not know about the rule out tests for rheumatic disease. I did DNA test on my own suspicion. Especially after my last iron test came back with an ALERT 84% iron saturation and 244 iron serum(35-155 normal)! Tested positive for compound heterogenous mutation of C282Y and H63D. So I donated my first round of blood in November. Shocked this hip pain came after my first donation especially if it related to HH.
I only had RF and uric acid levels done because of my sudden hip pain for 3 wks. It has now migrated to my back leg making it still hard to walk. I assumed it was the mycoplasma strains I got diagnosed with through TARCI on your advice.
I will look into getting all the test you suggest and the chelation protocals. I was told the specific protocols for chelating iron were very bad for the kidneys and not always the best answer.
Your post was very enlightening and gave me direction. Thanks about the info on the tetras and hyperpigmentation. In the past I have had to quit mino due to brown spots on my face! Makes sense now. And I never knew tetras were chelative in action. Very interesting!
I will use your info wisely. One question though,
Does your half brother see a hematologist or does he self donate blood and do iron tests?
I love my AP dr and don’t want to trade him in. I trust him immensely even though he told me he honestly knows very little about this disease. He suggested I find a specialist. I am so unsure. I wonder if a hematologist even knows much about this. Nowadays you never know which drs are just drug pushers and which one truly care to resolve the underlying issue.
Marianne

[Maz]

@MMW wrote:

Thank you Maz,
Your return post was way helpful! I had studied much on HH but did not know about the rule out tests for rheumatic disease. I did DNA test on my own suspicion. Especially after my last iron test came back with an ALERT 84% iron saturation and 244 iron serum(35-155 normal)! Tested positive for compound heterogenous mutation of C282Y and H63D. So I donated my first round of blood in November. Shocked this hip pain came after my first donation especially if it related to HH.
I only had RF and uric acid levels done because of my sudden hip pain for 3 wks. It has now migrated to my back leg making it still hard to walk. I assumed it was the mycoplasma strains I got diagnosed with through TARCI on your advice.
I will look into getting all the test you suggest and the chelation protocals. I was told the specific protocols for chelating iron were very bad for the kidneys and not always the best answer.
Your post was very enlightening and gave me direction. Thanks about the info on the tetras and hyperpigmentation. In the past I have had to quit mino due to brown spots on my face! Makes sense now. And I never knew tetras were chelative in action. Very interesting!
I will use your info wisely. One question though,
Does your half brother see a hematologist or does he self donate blood and do iron tests?
I love my AP dr and don’t want to trade him in. I trust him immensely even though he told me he honestly knows very little about this disease. He suggested I find a specialist. I am so unsure. I wonder if a hematologist even knows much about this. Nowadays you never know which drs are just drug pushers and which one truly care to resolve the underlying issue.
Marianne

Hi Marianne,

My half brother lives in Canada but, if memory serves, I believe he saw a hematologist initially and now controls his iron levels with blood draws based on regular routine labs (which need to be done at intervals for life).

Yes, you’re right about the type of chelation used for iron overload disorders (called, desferrioxamine) and, according to the Iron Disorders Institute it tends only to be used in patients who suffer from simultaneously low hemoglobin levels (hence, can’t tolerate the needed blood draws). It might actually be helpful to you to contact someone at this institute to ask them for help with some direction for you. It also appears that they have an online support group/forum where you can go and talk with others with iron-overload to ask questions, such as why you might be experiencing joint pain after a blood draw. They also have a “Contact Us” tab where you can jot a note to ask them a question. Your doc may also be interested in this site as he may be able to obtain the info he needs to help monitor you and direct you to appropriate treatment.

http://www.irondisorders.org/chelation-therapy

One of the signs of undiagnosed hemochromatosis is a gray pallor to the skin, so minocycline or any tetra could very definitely cause greater hyperpigmentation issues due to iron deposition in the tissues due to its chelative effects.

This is just a fellow patient thought, but your mycoplasma issues are likely unrelated to your genetic blood disorder. It is possible to have both, of course, but until you can get into a routine with the hemochromatosis and find a baseline norm, it might be hard to tell what is causing your joint pain. Does that make sense? The joint pain could be both – myco and hemochromatosis – or it could just be the hemochromatosis. It’s worth bearing in mind that lots of people carry one strain of mycoplasma or another as it’s hard to live on earth and not have been exposed to these bugs during our lifetimes (they’re in the air, soil, water supply, food we eat, passed by bug bites, you name it)…it’s just that someone with a rheumatic disease becomes hypersensitive to the myco antigens (according to Brown), which results in this “bacterial allergy,” and, hence, the resulting rheumatic disease in those with a predisposition.

The problem with hemochromatosis is that it can be misdiagnosed as a rheumatic disease (as in the case study above), because some of the major presenting symptoms, like chronic fatigue, brain fog, general malaise and joint pain, crossover with rheumatic disease symptoms. I think you’re really fortunate to have figured this out, Marianne, because iron overload can be pretty toxic, causing some serious probs down the road. By staying on top of it now, though, you should be just fine. 🙂 My half brother was fortunate, too, because he just happened to be diagnosed by a very, very astute hospitalist when he’d been admitted for something else.

Hope something here helps, Marianne. We don’t see a lot of folks here with hemochromatosis and I was only aware of it due to my half brother who was told he should tell any first-degree relatives to get genetic counseling. I did some research and found that it was unlikely in my case as it’s quite rare and we only have one parent in common.

[Trudi]

@Maz wrote:

I did some research and found that it was unlikely in my case as it’s quite rare and we only have one parent in common.

Hi Maz–

Hemochromatosis is not rare; doctors think so and that is why it is so overlooked.

“HFE, the gene for classic hemochromatosis, was discovered by a team of scientists in California 1996. Two major mutations of HFE attributable to iron loading are C282Y and H63D. Numerous prevalence studies support that the C282Y mutation of HFE is common among whites. In this population, one in 200-250 are homozygous (have two mutated copies). One in 50 are compound heterozygotes (have one C282Y mutation and one H63D mutation). One in 8-10 are simple heterozygotes or carriers of one C282Y mutation.”
http://www.irondisorders.org/classic-hemochromatosis

“The Centers for Disease Control now calls hemochromatosis the most common genetic disorder in the United States, one that affects 33.5 million Americans. An estimated 32 million are silent carriers, meaning they exhibit no symptoms, while 1.5 million have a double gene mutation because both parents carried the mutant gene, which puts them at high risk. Yet many doctors still believe what they were taught in medical school

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]

@Trudi wrote:

Numerous prevalence studies support that the C282Y mutation of HFE is common among whites. In this population, one in 200-250 are homozygous (have two mutated copies).

Hi Trudi,

Thanks for the clarification. This should help Marianne a lot and “rare” probably isn’t the right word. I was thinking hemochromatosis is a rare occurrence in relation to the prevalence of RA which is 1:100. That is, if a person has joint pain, fatigue, general malaise, etc, it might be considered rheumatic before hemochromatosis gets considered. You’re right, though, that one of the probs is that it is considered rare and most likely why diagnosis gets overlooked as was the case for my half brother who was quite ill and told it was all kinds of things until correctly diagnosed.

Hope you are doing well, Trudi!

[MMW]

First thanks Maz and Trudi for your replies,
I was wondering if there is a way to change the heading of this topic to “Hemochromatosis or RH”? I think anyone researching HH on this site might be helped if the topic was more specific.

Last June I contacted the executive director of the iron disorder institute, Cheryl Garrison. I was concerned because my pattern of labs where not consistent with HH. My ferritin was on the bit low side. Most people present HH with there ferritin levels way higher than normal, even in the thousands. Ferritin is iron storage in organs. When it is over 1000 serious damage and enormous symptoms are taking place. Mine started out at 41! But my labs kept showing a gradual increase since 2012 of iron saturation and iron serum. (So interesting you selected the article website you did Maz, cuz the pt in it had the same situation with normal ferritin). When my serum iron went to 244 (35-155 normal) and my iron saturation hit 84% (15-55% is normal), I was given an ALERT. I haven’t felt to great this past yr. so I decided to pay for a DNA analysis through the health-e-iron labs found through the iron disorder institute. This is when I discovered the two mutations C282Y and H63D. As a side note this means that my kids carry the genes and should also be tested. And my husband whose ferritin level runs over the 200 normal mark should also be tested. He donates blood regularly since we discovered it but never have done the HH gene test for him.
The point I’m trying to make for new onlookers is that I am iron “Avid”. This means that for some reason the iron isn’t going into storage but keeps floating in my blood. So please make sure your dr includes ferritin in your iron blood test panel. You need the full picture and you more then likely will have to request ferritin to be included since most drs never check this even with an iron panel.
The problem with being iron avid comes in with blood draws. Every time one donates blood there ferritin drops by 20-30 notches. Many people with ferritin below 50, whether they have HH or not have restless leg syndrome. And if someone donates blood enough and there ferritin drops below 20, a serious anemic situation occurs. So ferritin must be watched closely when donating blood. Yes, one can have low hemoglobin and that cues them into possible anemia and blood centers will always check for this. But in my case my hemoglobin and hematocrit comes back Higher than normal. But my ferritin is still on low side. This is where iron avid individuals become candidate for chelation therapy since they can’t give blood to get iron down.
When the body loses blood it is tricked and and goes into a mode of hanging on to even more iron, as it was explained to me. So iron labs could even go up!!!!! A dilemma indeed. I decided to donate blood with a keen watch on ferritin and not allow it to get below 30. So we will see if my iron goes up! I will keep you posted in a couple of weeks with next lab results.
Anyway, just explaining this so onlookers will know that Iron Avidity does exist.
Bottom line, I think Testing iron along with ferritin should be a routine test all drs do. It doesn’t cost much and it could save lives. People die from HH and the suffering beforehand is uncalled for since it is a easy fix!!!
I appreciate the lab info to differentiate between RH and HH, though and also the correlation between the two. I never realized how much HH is misdiagnosed as RH and how similar there symptoms are.
I took your advice Maz and switched back to zithromax today to see if it helps my leg pain. I will recheck my iron levels to make sure the last blood draw didn’t make it go up instead of down. I will check ferritin to see if I have room for another blood draw if my iron went down from the last blood draw.
Thanks for all the tips. Good to hear from you Trudi, I remember you from yrs ago on this board!
Marianne

[Maz]

Great post, Marianne! Anyone reading this thread will probably be learning a tremendous amount. I know I am!

One thing I failed to bring up is that it’s pretty universally known now that these stealth pathogens love biofilm which sequesters iron and other metals for these bugs to hide and persist in. So, having HH may not in fact preclude the potential for chronic infections, but might add to making the picture muddier. I wonder if the Iron Disorders Inst. has any data on this, Marianne. Is it something you were able to bring up with them when you made contact before? This really interests me, so I think I’m going to tuck into some further research and reading on the topic when I get some time after the holidays. Let us know if you find anything and hope your test results are improved and you start to feel better soon.

In the meantime, a very happy, healthy 2015 to you!!

[Trudi]

Marianne–
I did a search for hemochromatosis and ferritin on the main page and came up with some good information. It has been discussed on this board.

The reference ranges for ferritin have gone up. My doctor wanted my ferritin to go down to 20. According to my records, I felt the best when they were at 11.

Did you know that ferritin is also a sign of inflammation?

I remember you from the past on this board, too. 🙂

Take care,
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?

[mary77]

Marianne,
Thank you for your informative post on hemochromatosis. My husband was diagnosed 2 years ago after doing an annual blood workup that included iron serum and ferritin testing. It was a Health Fair put on annually that allowed us to find this out! I watched his results over a 4 yr period and grew alarmed over the rise in his numbers. I had never heard of iron “avid” until your post. My husband might be the same as you, so we will watch his ferritin closely.

His symptoms were joint pain, muscle pain and fatigue. I suspect many doctors would have told him it was part of “the aging process”. I am just glad that we found out about his condition before a lot of damage occurred.

Thanks for posting this!
Mary

[m.]

One reason I order my own blood work is wanting to have a CBC, and an iron panel including ferritin done at the same time.

One doctor told me “We don’t do that. We’ll order the CBC. If you’re anemic, we’ll order the serum iron test. If that is low too, then we’ll order the ferritin to see what’s going on.”

Another doctor was suspicious about my request and wanted to know if I was getting my information “from the internet”.

It can be frustrating, no doubt. No one is going to care more about our health than us.

[MMW]

You are right on target Maz! Absolutely, those of us that have iron overload are a walking time bomb for all kinds of infections. That is why over the yrs before I figured I had this, I have been on so many courses of antibiotics. I couldn’t figure out why I was always getting sick. It led me to test for mycoplasma, lymes diseas, gut bacteria, and parasites. All these tests came back with various types of red flags! Never thought to test my iron though!
Anyhow, there is great info on the net regarding hemochromatosis and infection. I include a few of good ones below for your research after the holidays.

http://www.sciencedirect.com/science/article/pii/S1201971207000811

http://sickle.bwh.harvard.edu/Feinfection.html

http://www.hemochromatosis.org/elevated-ts-increases-risk-of-infection

Trudy, yes your right, Ferritin can be raised if one has an infection, so this has to be realized when results come in. But either way the test should always be included in an iron panel and evaluated. And it is a good idea that the iron panel should be done more than once over a period of time to find a baseline for ferritin so any higher ones can be discounted due to infection.

I find it so interesting you feel great at ferritin of 11. My research online came up with many that suffer severe anemia taking a long time to get over at that level. Actually for the iron avid person they recommend bringing ferritin down to 2O to help get iron balanced again. I was hesitant to go that low after reading about the issues some have had below that. So glad you shared that!

Hi Mary, glad your husband went to the health fair and accidentally discovered his iron disorder. Another piece of information on iron avidity is that it usually happens when people with very high ferritin overbleed themselves while therapeutically getting blood draws. I have never donated blood in my life until November….just a chicken….ridiculous I know. So my iron avidity is strange. They don’t know much about avidity and it is harder to find info online for it. But here is one site.

http://www.irondisorders.org/Websites/idi/files/Content/1050668/IronAvid-all.pdf

Hello m! My long time roadback friend! Yep, your right to order your own tests. And that is a typical and I might say un knowledgeable response by a dr. Not surprising though. A reasonable place to get the iron panel with ferritin and/or DNA analysis is from Health-e-iron. I tried to post their site and tests but I can’t seem to get to there site. Maybe they are working on the page. Anyhow, this site will get you there eventually.

http://www.irondisorders.org/iron-tests/

Hope your iron levels are no problem for you!
Marianne

[m.]

Hi Marianne!

The Iron Disorders site is a great resource! I’m glad you caught your iron problem and have shared this information with the board here.

To your good health in 2015!

[Maz]

Hi Marianne,

I did a little sleuthing today. Turns out there is an interesting study using lactoferrin and xylitol to destabilize biofilm formation and iron sequestering of the organism Pseudomonas aeruginosa. (see title of second article – speaks volumes – “No Iron – No Biofilms”

http://www.sciencedirect.com/science/article/pii/S0924857911000513

http://www.the-scientist.com/?articles.view/articleNo/21286/title/No-iron–no-biofilms/

Following some dots and looking up lactoferrin, turns out that lactoferrin is found in colostrum and is used to bolster immune function, treat leaky gut, SIBO, and a few other gut probs that can be made worse by biofilm formation and bacterial overgrowth, as a result. The following wiki article describes the anti-fungal, anti-viral and anti-bacterial properties of colostrum:

http://en.wikipedia.org/wiki/Lactoferrin

What really intrigues me about iron sequestration by various organisms is that in rheumatic disease, quite often those affected discover they have this paradoxical anemia that improves with antibiotic therapy. Hmmm…no surprise there, eh? Further, in the recent Autoimmunity Summit conferences (can’t recall the speaker), it was mentioned that acute or chronic stress upsets the adrenals, elevates cortisol and this breaches the gut’s protective mechanisms, leading to leaky gut. How often do we hear of folks here who say their rheumatic disease began on the heels of some sort of trauma or stressor? Well, biofilm can be protective to the body in that it keeps otherwise pathogenic bacteria behind bars, so to speak, but when these organisms get released in a flood, creating inflam in the gut, leading to tiny perforations and allowing these bugs to breach the gut’s protective barrier, this sets off an immune response.

My guess is that there is great merit in ensuring a healthy gut for more reason than is currently acknowledged in medicine and there are ways to do this naturally and without further disturbing biofilm, but dealing with bacterial offenders before they leak out of the gut. Colostrum and L-glutamine make sense in this context.

It’s late, I’m rambling…but have so many open web pages, I just though to jot these dots down before I fall asleep and my permeable brain loses the train of thought or my laptop freezes up on overload! No doubt I’ll look at this in the morning and it won’t make sense, so please don’t take it as more than a tired rambling at the moment. Discussions on colostrum aren’t new here and it’s use has intrigued me, but it never made complete sense until now as to why other than it’s a human being’s first immune-boosting food…and for good reason! Could the lactoferrin component of colostrum be the reason that it works so well? i.e. it’s ability to cause “destabilisation of the bacterial cell membrane though iron chelation?” (quote from Science Direct study above)

Marianne, thanks for posting your links above – all fascinating stuff, eh?

[Trudi]

Marianne, thanks for posting your links above – all fascinating stuff, eh?

It is all fascinating; it is also good, at least for me, to revisit these health concerns. I appreciate everyone putting their heads together and sharing what they have learned.

Take care,
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?

[Author]

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