prior to starting AP

[Donna927]

I am traveling across the country to be seen by a highly recommended Drs in CA. I am very excited. My plane leaves in 30 days and I am now doing the following to prepare: taking probiotics after meals, taking salmon oil after meals, taking serrapetase enzyme on empty stomach, and taking blue green algae once a day. I am trying to walk /run around 4 miles a day.
My symptoms now are: a few swollen fingers, mild stiffness and pain,
and extreme fatigue, I have trouble swallowing alot and feel like I have a scratchy throat often, I am hopeful but not really motivated to do much although I wish I had the energy to do things, especially with my kids. I have good days and bad days but so many I am just so fatiqued and I seem to be in a brain fog state… you could say I am depressed a bit. I only occassionally feel sore in an elbow or knee but as of the last month or so, my neck is really achy and I have been so winded even though I am trying to exercise. I weigh about 109 and I have little children to keep up with. I am home now but in the fall I am starting nursing school and I need both my hands and energy back.
I was wondering if anyone had some suggestions of things I might do to get the most out of my doctors appointment and also the nutritional supplementation?
I want to make the best of it. I just can't go on those other medicines. My RA doctor here diagnosed me with seronegative RA in summer of 2006.
I am worried about this neck stiffness/hard to swallow business I am having. I also have a few fingers that go white in winter once or twice and a patch of skin on my right hand that seems dry.
I dont really understand scerladerma or if I have that. I went to a website on it but I still am confused and overwhelmed.
I want to feel better and have more energy. I am concerned about the hyperpigmentation from AP. I seem to react to everything I take. So far, I was on methotrexate and I couldn't tolerate even 10mg once a week. I was on Arvara and started losing hair, I was then on Enbrel .. I had best success with that giving myself shots once every two weeks however, my throat started closing up with that treatment and my face got numb so I stopped that as well. I went into remission for almost a year and then end of this past March, I flared big-time in my hands… I couldn't open anything in the kitchen and I dropped things.. I have lost a good deal of muscle despite how I keep at the exercising. I am so tired and down alot.
I so hope the doctors can help me. Besides the blood work I am doing next week, should I be doing anything else to prepare?

I am so grateful for some hope coming from this website and the positive stories of helpful treatment. I hope I will be able to talk about this for me soon.

Any helpful suggestions would be so appreciated.

[Maz]

[user=550]Donna927[/user] wrote:

My symptoms now are: a few swollen fingers, mild stiffness and pain,
and extreme fatigue, I have trouble swallowing alot and feel like I have a scratchy throat often, I am hopeful but not really motivated to do much although I wish I had the energy to do things, especially with my kids. I have good days and bad days but so many I am just so fatiqued and I seem to be in a brain fog state… you could say I am depressed a bit. I only occassionally feel sore in an elbow or knee but as of the last month or so, my neck is really achy and I have been so winded even though I am trying to exercise.

 

Hi Donna,

Have you considered Lyme Disease as a possible cause for your symptoms? I'm only a patient, myself, but my RA was triggered by Lyme, very soon after infection. Your symptoms sound very typical of late disseminated chronic Lyme….stiff neck, swollen glands, sore throat, facial numbness (Bell's Palsy), chronic fatigue and aching, swollen musles/joints. Being unable to tolerate immunosuppressants like methotrexate would also fit with this picture, because immune-suppression only allows the pathogens free reign to proliferate very quickly and cause worsening of symptoms.

Lyme is known as the second Great Imitator…the first being syphillis, also a spirochete. This is because Lyme can mimic so many other diseases, including RA, Lupus, MS, Sarcoidosis, Scleroderma, Fibromyalgia, Chronic Fatigue…the list goes on and on.

Just wonder if this is something that may resonate with you?

Peace, Maz

[Donna927]

Maz,
I think they checked me for that early on or was that Lupus? I am not sure. I am confused and I am overwhelmed.. but mostly I feel so exhausted.
I do live in an area where ticks are prevalent.. and I use to do alot of gardening. I will make sure I tell Dr. F this next month.
I am really nervous about the hyper-pigmentation thing. It seems like this Dr. I am going to see though is very good at what he does. I hope he can really uncover what I am facing and minimize my risk for these side effects.

Thanks.

[Cheryl F]

Donna,

Welcome, good to “see” you on the BBoard. 

Dr. F does routinely check for Lyme.  I know he did for Jess, not sure if he did for me, but I don't think he did.  I think you should ask to make sure.  I know he did for Jess, because I had to write a separate check to Igenx Lab.

Cheryl

[Maz]

Hi Donna,

As Cheryl says, Dr F should test you for Lyme and, if not as a matter of course, it's worth asking him for testing through IgeneX labs. An unfortunate consequence of the standardized testing at your average lab is that there are a high proportion of cases missed due to false negatives and your average rheumy will not diagnose chronic Lyme without a positive test (see the NBC Health Report just posted).

A diagnosis of Lyme should always be made upon clinical symptoms and patient history (tick exposures, living in Lyme endemic region, etc) alone, simply because standardized testing is notoriously inaccurate. Testing does not include testing for the organism, only antibodies, and because this is an organism that can quickly morph into many different forms, it can often elude the body's natural defenses….for some experts say, years and even decades.

Lyme carries with it the risk of coinfections and it's believed that anyone who gets Lyme probably also carries one of the many other infections that ticks pass (erhlichia, anaplasmosis, ricksettia, babesia, bartonaella, mycoplasma…the list goes on). So, ideally, coinfections should also be considered when being tested through one of the labs that specialise in Lyme testing.

Allopathic Lyme treatment can vary significantly from AP (minocycline alone), because of the many possible coinfections involved and also due to the life cycle of these organisms. I am not sure if Dr F treats Lyme, specifically, although he does do very comprehensive testing. So, you're going to be in very good hands in this regard. However, it may not be a bad idea to also consult a Lyme Literate physician.

Here is a good Lyme site and where you can also email to find a Lyme Literate physician, if needed:

http://www.turnthecorner.org/lyme-disease-quick-facts.htm

Peace, Maz

[Kim]

Hey Donna,

You mentioned you were trying hard to maintain your level of exercise at 4 miles a day and are suffering extreme fatigue.  Hard to know where to draw the line as to what is too much exercise, but the one thing my doctors have been in agreement on is that when you are this sick it is just too taxing on your body to do vigorous exercise.  On my 'up' days, I tend to overdo and always pay for it the next day, so I try to be smarter and pace myself.  Even knowing what I know, today I spent too much time in the garden and will surely pay for it tomorrow.  Guess I'm just a slow learner!

Good luck sorting out your diagnosis…..kim

[Maz]

[user=550]Donna927[/user] wrote:

I am really nervous about the hyper-pigmentation thing. It seems like this Dr. I am going to see though is very good at what he does. I hope he can really uncover what I am facing and minimize my risk for these side effects.

Donna…just realised this was missed before…hyperpigmentation doesn't happen in all cases. I believe I read somewhere that only 20% of people may be affected.

It's also thought that limiting sun exposure and wearing a good sun block can prevent hypermigmentation. One study found that the blue/grey spots, when these skin patches were biopsied, contained accumulations of iron.  This is why it's advisable to also take Vit C daily (with rosehip as a stomach buffer and taken with meals), at least 1000mg, which is supposed to help the body assimilate iron more effectively.

Here is the relevant link and info from the main website, under Education/Physician's Packet/Current Protocol:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=183

“The most frequent long-term side effect usually encountered after prolonged administration is minocycline-induced hyperpigmentation. Most often the skin at either sun-exposed or non-exposed sites may develop patchy or generalized darkening. Any area of the body can be involved. Characteristically it has a slate-like hue. The gums, teeth or even the conjunctiva of the eyes can also darken. The problem, with the exception of the teeth, appears reversible with drug discontinuation and the passage of time. Since the hyperpigmentation is purely cosmetic in nature, some patients choose to stay on minocycline due to its beneficial effects on their RA. In an animal model of minocycline-induced hyperpigmentation, high dose vitamin C therapy improved the state for some. Decreased sun exposure can help the problem, at least in part.”

It might relieve your fears to know that last summer when I was on heavy doses of tetracycline, I developed a brown/grey hypermigmentation on my forearms, but this faded throughout the winter months. Also, people who get tooth discoloration say it is easily removed when having regular dental cleanings.

Peace, Maz

[A Friend]

Donna,

Just my opinion, but an opinion formed over the last several years after trying to find answers for a very long time.  When people are ill, and if they feel like it, walking about 30 minutes a day can be good for them.  However, when they are ill and run/walk long distances, they may use up the resources the body needs for the owner to get well — sweating out needed minerals/electrolytes and using up too much of needed energy.  Any time someone is chronically ill, they are already considered to be very acidic, which depletes minerals trying to neutralize the acids.  Illness cannot exist in a pH balanced body.  Health cannot exist in an acidic body.  If you are young and have greater reservoirs, this may delay the worst of symptoms — but not necessarily if one was already very compromised. 

Running/walking causes further loss of vital minerals (as do other mental and body stresses), especially magnesium, which can cause ATP heart energy to decrease along with other more serious heart problems, even sudden death.  Also, this deficiency can cause fatigue, headaches/migraines, spasms, neck pain, back pain, Raynaud's, and on and on — and near the top of page 4, mentions even hot flashes.  All pages are important reading, but multiple examples many of us experience can be found on pages 4 thru 11.

 This very astute physician, whose article I accidentally found several weeks ago, just happened to be someone I've known for a number of years.  Now is that serendipity or what!  I had never seen the article or heard of it (just doing searches to learn more), but it was in the realm of what I was trying to find, and to find the underlying cause of my inability to make progress, and going downhill no matter what.  (In addition to the paper/link I found, I also found another paper on what can help when oral supplementation is not enough, even after months of trying.) 

I won't try to remember more of the maladies/symptoms of patients with magnesium deficiency in the link below — but it does include references that two famous physical fitness persons who were runners and died suddenly, probably had heart attacks brought on from this deficiency.   It said that this was the “perfect crime”, because if magnesium blood tests were done, they would be worthless, because the body keeps blood serum within a very narrow range, or we die; so the body borrows magnesium and other minerals from other organs and bones to keep the serum in the correct pH range, and when tested, it will nearly always appear “normal” — so the test does not test places that can tell the true story.   

 This is the link:   http://www.pbraunmd.org/magnesiu.htm

This may not be our only answer, but it certainly appears to me to be one we really need to pay attention to and learn more about. 

AF
 

[Pip]

Hi Donna!

Guys, she's not talking about the 'tan' thing, or even the bluish thing – she's talking about the super black cover your entire legs thing. 

So, Maz, that maybe 20% number is going to scare her to death.  LOL  No, this is the extra-super-rare thing that worrying her.  At one time I'd seen some research that said something like 27 people had been diagnosed with that black thing.  I'm sure the actual numbers are higher, but not nearly 20%. 

When I went to research this, I found that cortosteriods can also cause hyperpigmentation.  Hmmmm. 

And interestingly –

http://www.sciencedaily.com/releases/2002/03/020307073603.htm

– which I'm also going to post in another thread.

So, my question is this – if iron absorbtion is a problem, would this be much more likely in people with high iron numbers?  That's kind of what I got out of what I saw yesterday.

And even tho my iron is low – I think I'll take my nicely tanned backside over to Whole Foods and pick up some Vitamin C.

Hugs,

Pip

[lynnie_sydney]

I would have thought the opposite Pip. And perhaps your iron is low because the pathogens are using it for infection purposes and so your body is not able to absorb it???? That is if I have understood the possible implications of the report for those of us who subscribe to the infectious theory. Lynnie 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Pip]

Hi Lynnie –

My bad – I'm saying my iron is low because of the critters. 

But you know how some of us are one way and then the rest of us are the exact opposite.  IE hypothyroid vs hyperthyroid.  What little I read last night made me think the people who were susseptible to hyperpigmentation had the high iron numbers.  Of course I didn't have enough time to verify.

Hugs,

Pip

[Maz]

[user=23]Pip[/user] wrote:

Guys, she's not talking about the 'tan' thing, or even the bluish thing – she's talking about the super black cover your entire legs thing. 

So, Maz, that maybe 20% number is going to scare her to death.  LOL  No, this is the extra-super-rare thing that worrying her.  At one time I'd seen some research that said something like 27 people had been diagnosed with that black thing.  I'm sure the actual numbers are higher, but not nearly 20%. 

 

Thank you, Pip, for clarifying. I wasn't aware that this was Donna's concern. 😉

Donna, please disregard my comment above about the 20% thing, then. This was in relation to the small patches some people get that look like moles or bruises that it is said Vit C can help avert.

It may also allay your concerns to know that there are substitutes for minocycline, if this is indeed Lyme-related. Lyme docs use a vast array of different classes of antibiotics, anti-protozoals, anti-fungals, etc to target Lyme. And, in the case of chronic Lyme, it's usually considered necessary to use a combo approach to get at the coinfections. If it's not Lyme and Dr F feels you'd benefit just as well, doxycycline or tetracycline are possible alternatives to minocycline. Dr Brown also had good success with these. 😀

Peace, Maz

[Donna927]

Thank you for the welcome Cheryl and Maz and everyone.
I see I am in very good hands and company here. I am so grateful for all the responses.

Maz, I am scared of both things.. 🙂 I honestly have much to learn. I am going to be reading The New Arthritis Breakthrough book and keep learning here on this website. So if it is Lyme, can he check me in CA? Should I call the office now and ask if they want me to do it here and send it out to them? or just wait? I want to make the most of my visit. I am flying out on the 14th and see the doctors on the 15, 16th and returning on the 18th. I wont really be there but a few days. Should I do through Dr. F first, find out if it is Lyme and then go to the Lyme doctor? I didn't know there were so many different types of specialists.

Today I had my blood work done. They took 7 tubes so I am not sure what they look for in the 7 tubes but wow, plus a urine. I am glad he is looking.
I am so relieved. I feel so confident about the doctors thanks to all the input here.

I am sore from running. I better lay off a bit. You have given me some good advice. If I do too much, I do pay the next day. When I feel good, I just want to get right in there and do whatever I am doing.

Pip,
I haven't been able to do much more research on this . I have been so busy with my kids. I didnt mean to leave you hanging.
I just know if anyone would react it would be me. My luck, my body.
I just would be devastated with all those spots all over my face, etc…

I have to check out the supplements Dr. F recommends from his site. I better add vit C… and something anything for more energy.
I am writing down lots of questions. I hope they have answers about what it is that makes me have this. Maybe they will let me do the Zithromax a few days a week. Whenever I was on that for a sinus infection or something, my arthritis always felt better.

Thank you all.

[richie]

Hi

THe degree of hyper pigmentation is directly related to sun exposure —Maz is correct –many many folks dont get hyper pigmentation at all –however folks at length in the sun are really prone to it —a nice heavy sun block will help –By the way -you are definitely going to one of this countries best doctor –he gets folks better !!! Cant say more than that !!!!!!!!!!!!!!!

Richie

[Donna927]

Hi Ritchie,

I am smiling and so excited about Drs. in CA.
I have hope now and maybe my health will be back soon too. Just not taking those other medicines is bringing life back to my core.
I am however, out in the sun with my children daily. I have plenty of sunscreen and a big hat. In the fall I will be busy with school and it won't be much of a bother. Anyway, I hope they make up a good mixture of what I need that limits my chances of getting those spots. Thanks:)

[Author]

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