prior to starting AP

[Cheryl F]

One thing that I do consider myself an expert on is sunscreen and sun exposure.  You might even say I am a sunscreen connoisseur.  I am very picky.  I recently found one that I love.  It is spray on 70 SPF, Neutragena, I like the “Cooling” version.  It goes on very light and it really works.  I officiated a big swim meet all weekend.  Sprayed it on in the morning.  Stood in the sun ALL DAY from about 7:30 AM till 5PM and my forearms weren't even pink.  Usually, the backs of my calves get FRIED!  Again, not even pink with this stuff.  The sun doesn't have to be an issue. 

Cheryl

[Donna927]

If its something I do a lot..is worry. That is good to know about that Cheryl. I will pick some up next time I head to the store.

I am so fatigued.. I don't know what is wrong with me. I cant get up sometimes without a mental pep-talk. I am feeling very heavy breathing which scares me. I read some of the other discussions to try to learn a little bit more here and there. Read about the resistance post to some antibiotics and hertz reactions… so now concerned about those issues. My biggest complaints now are fatigue and hands. Will this treatment help me in time for fall nursing school? If I start in mid July with something, worried I may be out for a battle. Did the first “get worse episode” come quick for you all or about how fast did you say it was felt and how soon did it fade?
I just am coming down a terrible three month RA flare. I have my heart set on school this fall, I would hate to change my plans:(
I need some energy back and some hand mobility. I hope my other joints don't go haywire and leave me unable to walk. I am thinking that is a good thing AP fighting bugs wise but may be untimely by my calendar. I am anxious to learn more. I have to try to focus on the positive but I don't wish to stop my plans. Sometimes I just want to throw in the towel but the next day, I say no, you can do it.
Bottom-line, I am kind of scared. (I am also a whimp of a flyer and missing my kids already too) It will be worth it though won't it?

[Maz]

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

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.

Hi Donna,

When Lyme is suspect, I personally wouldn't delay seeing a Lyme Literate physician to get a second opinion, even if for only one consult, simply because Lyme is a diagnosis that must be made on clinical presentation and patient history…not just reliance on bloodwork. A positive test is considered a bonus and added confirmation, but a negative result doesn't necessarily preclude that one may still have infection. In fact, the current estimate of false negatives for standard Lyme testing is approx 40%. People seek out second, third and even fourth or fifth opinions about their conditions all the time and a good doc will have no problem with this. It's not uncommon for docs, themselves, to seek out the opinions of other docs when they have a problematic case.

I have heard that Dr F does do Lyme testing, but just to be sure perhaps you could call his offices in advance of your appt to ask about this. You could also ask at that time if Dr F treats Lyme or whether he'd refer you to a LLMD. If the bloodwork you had done today didn't include Lyme testing, he may be willing to write you a script for these tests in advance of your visit, so you have results in front of you. The test kits can be ordered directly from IGeneX or Dr F may have one in his office to send you.

You mentioned having one month to wait before your visit to Dr F. Many LLMDs have wait times, too, and you may not get in any sooner at this point, but if you can find a good one that will see you in the next week or two and it doesn't present too much of a financial burden, it wouldn't hurt to seek out a second opinion for your own peace of mind. As with any doc, however, it's worth doing your homework to ensure they provide the type of service that suits you (allopathic, naturopathic, integrative, etc).

Just thought to share some possibilities for you to consider on your way, Donna. Do hope you find your answers soon. I know this waiting game and all these decisions to make aren't much fun when you're in pain. 😕

Peace, Maz

[Donna927]

Thanks Maz,
I made an appointment with my internist on July 2nd. I am going to call tomorrow to ask Lilly what other tests would be helpful and my local doctor can do some of that at that time. I might ask for a chest xray as most of my fatigue is in heart/lung area. My hands aren't in much pain now but my throat and heart/lung area are heavy and feel very tired and weak. I got my kids ready this am, off to school, cleaned up breakfast dishes , mopped up spilled juice, laundry and bedroom cleaning and at 10:30 I was totally whipped. I am dizzy, totally brained fogged , and out of breath. I say from my neck to bottom of my chest, I know something is happening in there and it isn't good.
Yesterday my thighs also felt weird with muscle weakness and soreness.
I will start looking for a lyme doctor too. I want to make the most of the visit. But, I hope it isn't Lyme.

I am so so so tired. I got a good night sleep too but just the same my body is craving rest. Maybe it will pass.

:sick:

[Maz]

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

My hands aren't in much pain now but my throat and heart/lung area are heavy and feel very tired and weak.

 

Donna, really sorry to hear you're feeling so bad and having to be Mom and dealing with sweet young ones who need you, too.

Just thought it might be relevant to add that babesia, a coinfection of Lyme, can present with the kinds of symptoms you're describing. Might be a good idea to add in a babesia test while you're getting the main Lyme tests done. Actually, would be optimal if they just tested for all the coinfections in one shot :?, but getting this done can be very costly….and, again, a good LLMD will spot and diagnose the symptoms and treat accordingly right away, even without tests, because if you have Lyme involvement, it's just not worth letting Lyme and coinfections get the upper hand as it can progress swiftly. Babesisa is a protozoal infection that needs more specific treatment with an anti-protozoal medication and antibiotics alone won't hit it.

Hope you manage to get this all sorted soon, Donna.

Peace, Maz

[Donna927]

Maz, I think I will do some research on this next week. I am still a bit whipped but thanks. I hope being strict for a couple weeks on my diet will push me in the right direction and get me closer to my appointment.

Because,
I was resting and I decided , I would take a multi vitamin with added green food. I thought I must be missing some nutrients as I later had some more pep.
It must be somewhat nutritional I reminded myself. Yes the brain fog made me forget just exactly how I adjusted my diet when I got over this the first time. I decided for the next two weeks I am going to eliminate completely soy, dairy, grains and gluten, (I may have a potato or some brown rice but nothing else for grains), coffee, wine and shellfish.
I will record it all and see what happens to my energy level, and no sugar or high sugar fruits.
Can I do it? Let's see if it makes any difference. Two weeks ? Sure nothing to it right.
I will substitute my morning coffee with caffeine green tea, add the multivitamin and take the probiotics in capsule form because I don't want to take the liquid probiotics without the soy milk. I might stick with some salmon oil or eat that more often and lots of vegetables still. I am keeping the serrapeptase in and will eliminate the spirulina because it is in the multi vitamin. I will eat eggs a few times per week.
I did this gluten free before and it was sooo hard, but it really worked good.

I was just so fatigued. I read someplace that if you are depleted of so many nutrients that you can go into a spacey brain fog place. I must need alot more nutrients. I just had to try something. I know it wont be easy but it is going to be better. I found a red lentil soup recipe that looks yummy.
I am also reading “The Infection Connection”. I totally agree with the author's view of treating the infection not only with nutrition, but spiritual health healing and environmental purity. It makes so much sense to me.

I won't do to much and will rest as I can to recover but I am working out in the am. The strict nutrition coupled with a low paced walk/jog might get me up and feeling better.

It might help if I try really really hard to stick with it. I can't afford to be so tired all the time.
😀

[Donna927]

Maz,

I am kind of embarrassed and laughing at myself. I took a multi vitamin and I have tons of energy… I stopped the soy but I just cant seem to give up the coffee.

Maybe that is all it was.
I don't know why I stopped them. I think I thought something in them bothers my hands.. and honestly it seems that they are more sore than before I took them but the fatigue is all gone.

I am trying to limit sugar and grains… not sure if I can go completely gluten free .. too tough.

Did I read something that when you are on minocin, you have to limit vitamins and minerals?
I don't want to give them up now.

Now that I have more energy I will also check into lyme info.

Thanks.

[Maz]

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

Did I read something that when you are on minocin, you have to limit vitamins and minerals?
I don't want to give them up now.

Now that I have more energy I will also check into lyme info.

Hi Donna,

Sorry for my delayed reply to your previous post. I've been a bit waylaid. You shouldn't have to limit vitamins or minerals while on minocin, although it's important not to take them at the same time. This is because, especially with minerals (iron, magnesium, calcium), these interrupt absorption of the antibiotic. So, no need to give up your supplements, just be sure to take them two to three hours away from your mino doses to ensure you get your full dose. This is also why it's advisable to avoid dairy or anything containing minerals (like some antacids, for instance) for a couple hours before and after your mino, too.

Yes, if you suspect Lyme is implicated in your case, it's very worth researching more on this disease and its coinfections. It's one of those chronic infections that can remain dormant for years or even decades after initial infection, but then explode into existence when the immune system is somehow compromised. In some, it can creep up and wax and wane, much the same as rheumatoid disease can creep up, flare and remit. In other very severe cases, however, inflammatory levels can become so severe and entrenched so quickly, it can also look like very swift onset, severe, unrelenting rheumatoid disease. There are so many permutations of Lyme's presentation and so many diseases it mimics and triggers.

So glad you're feeling a bit better, Donna! 😀

Peace, Maz

[Donna927]

I go next week to my appointment. I am getting ready!
I have really worked the diet and have had many more good days than bad as of late. Hopefully I will do ok with the trip out.
I was really fatigued yesterday but my kids seem to get me moving even if it takes me extra long. Swimming has also helped my energy/depression levels.
I am getting nervous too. I hope I remember to ask all my questions and not get intimidated. I am writing down some things. Are there any for sure things I should not forget to ask?
I am concerned about the amount of muscle I am losing. I weigh 107 but I use to have lots more muscle. I keep doing resistance things but I look so skinny these days.

[Maz]

Donna, all the very best for your trip to CA!  Don't worry about your muscles…that will all come back as you get stronger. I lost tons of muscle mass everywhere, but it's starting to come back in my upper body and, although my knees are being a nuisance still, I'm beginning to see some signs of a little more strength in my thighs now, too.

It's nearly midnight and my brain cells are fading, so can't think of any good questions for you to ask the docs, but perhaps others who have been to see Dr F will be able to give you a heads up on what they found they needed answers to. First consults are usually a good length of time, so no doubt you'll think of things to ask as you go along….in the meantime, just keep writing anything down as it comes to mind and take your questions with you. I've done that a number of times….and should probably start doing it again! I keep meaning to ask about intra-articular antibiotic shots and got so engrossed in others topics with my doc that it slipped through my seive of a brain! :roll-laugh:

Bon voyage and looking forward to hearing all about your adventures upon your return!

Peace, Maz

[Donna927]

I am back…

It was an adventure…
but
I seriously am confused.. I havent started the antibiotic yet.

I have many many supplements
Here they are… its over 35 pills a day..

memory support(bid). cognitex(2, then 1 ), Saccharmyces( 2 bid), coqu10 bid),
omega supreme( 2 bid), joint support ( 2 bid), bone support ( 4 at bedtime),
D3 5000 ( at bedtime), Inflavinoid IC ( 2 3 times a day), energy booster ( 2, then 2), multigenics w/o Iron 3 at bedtime

and the antibiotic I dont think it is minocin …
I cant read the writing… vibromycin maybe….
I am suppose to take this MWF bid 100 mg

did I say I am overwhelemd…

all my tests were negative and inflammation markers all normal. They said I had a lazy thyroid, reynaugds, poor leg circulation,
I know I have some gluten sensitivity and when I avoid grains.. feel better.
I just cheat hormonally once a month.. throws my whole system off track.

overall minor arthritis…

these supplements are awesome… feel lots of energy and pep. My head is clear as a bell and I am not as depressed. I feel really good.
Inflammation is not bad in my hands .

The thought has crossed my mind???
just take the antibiotic and do the diet and this is best defense,,

or just do diet and take supplements and avoid antibiotic…since all tests normal??

My mom said to listen to the dr. and to relax…

worried about hyperpigmentation. Dr. said it would be a tan not spots… but worried about my teeth staining, etc… gut and infection problems.
getting worse??

What do you think? Any comments? I am a newbie…
need some help.

[lynnie_sydney]

Donna – first thing I'd say is try to relax. Going into stress mode will not help, rather hinder your journey. If you liked and related to your doc, then why not try what he said to you? Not blindly following, but co-partnering in your healing road. If you take it slowly and relax, your head will be clearer, decisions easier and you will start to ask the right questions. You will find that you will gradually educate yourself over time. And time and self-education is very important…..this is a slow road to wellness, not a quick fix.

In terms of the gluten-free. Take care about hidden gluten. It's in all instant coffee except Moccona Classic – the others use wheat in the processing. Likewise the chocolate they sprinkle on cappucinos, it contains both dairy and wheat. I drink brewed coffee mostly AND Mocconna Classic if I ever have instant. You don't have to give it up. Best to you. 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)

[Donna927]

very stressed…. and sore today:(

[Silvia]

Hi Donna:

I don't know if this is relevant but extreme fatigue is also the classic symptom of hypothyroidism, which is common in people with other auto-immune diseases (myself being one of them).  I assume you've been tested, but if you haven't it's an easy blood test to get done, just to rule it out.  Good luck!   Silvia

[Donna927]

Is that when you have a lazy thryoid?

They said I had that?

besides fatigue what can else is that?

I dont want to take an antibiotic if all my inflammation markers are completely fine.

to most here that would be remission right?

I have just a few joints… that swell..
in my hands…

but I am fine otherwise…
I really have fatigue alot , get cold easily, and cant seem to keep weight on…

the doctor said my muscle is fine..
so who knows…

if I dont cheat on the diet I am fine mostly…
these power supplements are helping all the way around so I suppose I will start with these.
maybe it might be thyroid.. they just said a lazy thyroid?

[Author]

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