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436713 tn?1408884730

Unexplained bone pain, hair loss, low nutritional levels

Please help! I am a 27 year old female and starting in October I began noticing that my hair was thinning & that my knees ached.  I have never had achey knees in my life.  I also starting having migrating joint pain in my fingers, sometimes my wrists, my feet, etc. After a ton of tests, nothing really came back besides low iron & b vitamin levels. Which to me, means there is absorption problem. I eat tons of organic veggies & grassfed meat every single day. I also supplement with eating liver once a week, fermented cod liver oil, a lot of bone broth, and mineral rich herbal infusions like nettle.  

After going on an iron supplement for the month of November, my newest results in December were the my iron is even lower. HOW is this possible? Unfortunately,  my doctor doesn't seem to think anything is wrong and that it is in my head.. which is quite possibly the most frustrating thing to say to someone who is feeling sick & exhausted.  I then pleaded to get a full thyroid panel (everything is fine), an endoscopy from the gastroenterologist (everything was clear), and got checked by a rheumatogolist (who frankly just looked at my hands and knees and said "no swelling... i think you are fine."

My doctor then said that I should layoff on the disease detection since my health insurance said I was looking like I was abusing the system... !!!

My herbalist on the otherhand thinks I may have  a lyme co-infection and I have been being treated with herbs for that.

However the past months or so my pain feels more intense. Every day different fingers hurt... sometimes my wrist, and ALWAYS my knees. It literally feels like I have less cartilage in  them... I can also feel my knee caps buzzing... I guess my biggest question (please try to reassure me and not scare me)... is could this be bone cancer? I know that is a crazy fetch... but when I search joint and bone pain.. arthritis and bone cancer come up.  And I just really do feel like I have arthritis.  

My herbalist says that if the herbs are killing whatever infection I have, there will be die off, which creates a temporary worsening of symptoms.  Does anyone have any other suggestions? I am feeling so lost and abandoned by the Western medical world.  My only fear is that if I just keep "not going" to the doctor even though I feel like crap, am I just ignoring something serious?  It doesn't feel really practical getting a new doctor, since I just have crappy insurance and this is the best doctor I have ever had (prior to him dismissing my illness..)  
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Avatar universal
About your comment:
"Not real sure where Burrascano specifically states that Borrelia consumes Magnesium.  From the treatment guidelines, he states that "Magnesium deficiency is very often present and quite severe"

That  may be what is a common happening, esp. on the Internet: Someone interpreted that as Borrelia 'consuming' Mag and then that's the information that gets passed on.

As a child did you ever play that game where everyone sits in a circle and tells a 'secret' to the person next to them and so on? Well, what came out at the end hardly ever had any relationship to the first 'secret'! LOL That's the Internet for you.

Helpful - 0
Avatar universal
Foundation for Alternative and Integrative Medicine

There are two FAIMs---- one founded in 1998/1999 and a newer offshoot in about 2009.

It's the one founded in 1999 that I had fun researching on the Wayback Machine. There were tons of 'snapshots' of different pages of that web site then and that's where I found most of my information.

Today, when looking on the Wayback, I find that almost all of the 'snapshots' are gone. (grin) Very interesting. I guess the original FAIM's little bot crawler has been very busy!

Too bad I didn't copy all of those snapshots, but I did manage to keep a lot  of them.

Helpful - 0
4451049 tn?1387153437
I agree, friendly and instructive debates are fine.  I had a hunch that you like a good debate ;)  

I have just let it slide too many times, people claiming that Borriella consumes Magnesium.  I can only let things slide for so long before I say something.  Perhaps it consumes Magnesium too, I don't know.  That's why I was curious as to where that thought may have originated.  I'm always open to additional information.    

Not real sure where Burrascano specifically states that Borrelia consumes Magnesium.  From the treatment guidelines, he states that "Magnesium deficiency is very often present and quite severe" but I'm not sure where he says that Borriella consumes Magnesium.      

I am not sure what FAIM is, care to clarify?

  
Helpful - 0
Avatar universal
Personally I like a debate. They can be instructive and friendly. I especially like Socratic questioning, but that's my preference. (Wiki it)

In the past there were a few members who thought any idea different from theirs was argumentative but that hasn't happened for a while here.

I feel debates should contain source references too, as you did. And no, I don't always do that! But I should. I have a sense that few members even bother to read them. (grin)

So, let's debate. No ad hominems, please. (grin)

I don't know where the Magnesium idea came into being but I take Mag. because it lessens my myoclonic jerks (leg twitching). But maybe Burrascano put Mag. into play, but then we know that he was influenced by the FAIM people and their alternative marketing. However----  in all fairness---- just because he was influenced by FAIM doesn't mean he was wrong.

I'd give the source for Burrascano and FAIM but it would mean a lot of grubbing around on my computer and the WayBack Machine. Please don't ask me to do that! LOL
Helpful - 0
4451049 tn?1387153437
http://www.huffingtonpost.com/2013/03/24/lyme-disease-bacteria-immune-system-iron_n_2934134.html

Sorry I don't intend to start a debate here, but I'm just curious where everyone is getting the idea that Borrelia consumes Magnesium?  Many people may test low for magnesium, for whatever reason.  I didn't, yet I tested positive for Lyme.  
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Avatar universal
I mention Bartonella because of your bone pain.  That symptom is more common with Bartonella than Lyme.  There's Bartonella Henselae and Bartonella Quintana.  B. quintana was called "Shin Bone Fever" in WWI because it so often causes bone pain in the lower legs.
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Avatar universal
Just to clarify... Lyme does indeed use magnesium. Many people with Lyme end up with low magnesium, which itself can cause a whole host of weird symptoms. What's unusual is that Lyme uses manganese instead of iron.  It's the first bacteria known that doesn't need iron.

I believe you can get an IGeneX Western Blot for significantly less than $600. You don't have to order the whole Lyme panel.  It's worth it if it gets you your diagnosis!

Also, ask your doc about ordering Bartonella testing. Bartonella can have many of the same symptoms as Lyme. (Bart tests can be false negative, too.)

I'm appalled that doctors and insurance companies think they know everything there is to know, and that anyone who is sick will turn out the test resuts they're "supposed" to have. I continue to be amazed how many doctors conclude there's "nothing wrong" with a patient just because they can't figure out the source of the patient's symptoms. It's a terrible trend in medicine.

There are a variety of causes of vague joint pain, but I believe there are very few causes of migrating joint pain. Perhaps you could ask the rheumatologist for a list of these conditions.  Lyme should be at the top of that list. S/He should be willing to test you again.
Helpful - 0
4451049 tn?1387153437
As you may already know, just make sure your "b complex vitamin" is in active form..  Methylcobalamin or even better, Hydroxocobalamin.  I have a genetic mutation in which I do not tolerate methyl donors, such as Methylcobalamin or Methyltetrafolate, ect.  Either way, everyone can benefit from Hydroxocobalamin.  It's just not as easy to find as Methylcobalamin.  No big deal though so long as it is in active form.  Just listen to your body. And not ignorant and careless physicians!  Not everything is as straight forward as they want it to be!      

  
Helpful - 0
436713 tn?1408884730
Thank you Ephedra! I found your post both insightful & comforting.

Thanks Mojogal.  I had the regular western blot test done by my doctor, which came up negative. However I don't truly trust the results, nor was I tested for co-infections.  At this rate my doctor is not pursuing any more tests because he doesn't believe anything is wrong.

I want to do the IgeneX labs.. but it seems to be $600-1,000. Which I don't have the money for.  It is hard enough paying the $200/ month seeing my herbalist and buying all the tinctures + supplements.

Currently I am on 3 lyme formulas that constantly shift. (for 7 days I do formula # 1, then for 7 days I add in a support forumula. Take two days off. Then for 7 days I take formula #2, and then add in support for 7 days. Two days off. repeat cycle).  

I want to trust that this will help me.. but I always get concerned... "what if this isn't a lyme or a co-infection and is something even more serious!?" Yet, since the doctor can't find anything, this is the only diagnosis I can hold on to.  I've actually had two mysterious illnesses that were undiagnosed in the past 6 years... So i am wondering if I have been infected with whatever I have for YEARS. In the past i had bouts of being dizzy all the time, having a fuzzy head, nauseous... and then a few years later I had chronic digestive upset, undigested food, bloating, mucous. These always lasted for about 9 months.  Now I'm on cycle 3 of mysterious illness... It is quite frustrating.

In addition to tinctures, herbal infusions, bone broth.. I have been taking an MSM supplement, fermented cod liver oil, COQ10, reservatrol, iron, and a b complex vitamin.  I am now one week in to taking a hot bath with epsom salt and thyme essential oil. I hate it, but I tell myself that that is the virus talking..

I have since calmed down that perhaps this isn't "bone cancer".. because after the bath, I seem to have very little pain for up to 30 minutes. Which to me tells me that if it was something in my bones, there wouldn't be relief, period.

I guess I just need to keep doing what I'm doing, but I am still constantly frustrated & concerned! :(
Helpful - 0
1763947 tn?1334055319
Hi, I am glad you are seeing an herbalist. Has he tested you for Lyme?  Lyme usually comes with co-infections which in many case can be worse than Lyme itself.

If your Dr doesn't use IgeneX labs, you can order it yourself and have the dr run the total Lyme panel test as well as the co-infection test except even at IgeneX, the tests for Co-infections are not the most reliable.

I was on abx and supplements for 18 month and actually got worse. I have switched to an herbal protocol. My Lyme Dr (LLMD) ran a specific co-infection through lab corp. it is for mycoplasma which cause me to get congestive heart failure.

As for Die offs also called a herheimer reaction, you would have a worsening of symptoms. You can ask your herbalist for relief from herxes or I have some suggestions. Just PM me.
I believe in what your herbalist said and I hope you find relief soon.
Helpful - 0
4451049 tn?1387153437
As I am sure you know, medicine is very complex.  Have you had a CBC?  How are your blood counts?  Have you had any inflammatory labs i.e. CRP or ESR to assure that there is really no inflammation.    

There are just so many possibilities, that it is impossible for us to give you a flat out answer.  Have you had any other vitamin/mineral testing?  Are there any other abnormalities?  Have you been tested for Celiac or are you already gluten free??

Were you taking the iron supplement on empty?  This increases the absorption.

As odd as it sounds, there are certain parasites that feed on certain vitamins and minerals.  There are millions out there.  Borrelia does not prefer either one, but rather it feeds on manganese NOT magnesium.  I am not sure about the co infections.

There are many things that can cause bone and joint pain, Borriella is a huge one.  I would not suspect bone cancer though.  As for the buzzing in your knee caps, that seems a little odd.  But as I said medicine is very complex.. nerves, ect.  And anything is possible with Lyme.  

Based on your description, it sounds as if you could be having a die off (herxheimer) reaction.  And that would be a good thing.  Just hang in there!

You could always order your own labs are try to figure it out for yourself.  That's what I did.  Of course, all my labs always came back normal and it gets sort of pricy.  But in my opinion, it beats hanging out and getting ridiculed by doctors.  It is just a waste of energy.  

Only YOU know what is going on with YOU better than anyone!!  



      
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