Doing Everything Possible (thanks for the quote Kim) But Am I Still Missing Something?

[Mumof3]

Thanks very much Maz. I will be sure to check out LymeNet to research this further. And I have to agree with Nancy. You are an absolute angel to all of us!

[Lynne G.SD]

Hey Maz;
     We just want you to know that we love you.It is a crying shame that that word is not used enough.
    Grosses bises….. it's  a French thing for those who don't already know.

[A Friend]

[user=869]Mumof3[/user] wrote:

I am noticing that every month (oddly around the 19th), I have a flare that lasts 4 or 5 days. During the flare, my swallowing becomes an issue (which is scary). I have excess saliva. This month my voice has changed. I sound very hoarse when I talk (I have no idea what this could be). I get a bit of stiffness and muscle cramps. The worst part of it is the muscle pain in my torso. I feel like I've done a thousand sit-ups. I also have a lot of pain around my ribcage. My chest also hurts and I get some palpitations. To describe it, I would say that my whole torso area/chest/lungs feels so inflamed to the point where it hurts to breathe. I'm not one to take drugs for anything but I'm finding I need to take ibuprofen. Then after about 4 or 5 days I am fine again.

The strange thing is when I don't have the flare, I really feel like I am improving. I still have some issues but I have much less fatigue and I feel quite well most days. Joint pain is gone. Heartburn is gone. Bottoms of feet don't hurt any more. Whereas before, I just felt lousy every single day. I realize it is not an overnight cure and a long process. But I just need to understand……is this how AP works? Some good days and still some flares? Should I still be getting flares like this with this intensity? Don't get me wrong, I am so grateful that I am still so well. But the flares right now are very intense and I get scared and wondered if this is normal?

So here's what I am doing:

1) Diet – avoiding all food allergies;
2) Hormones – addressing all imbalances (thyroid, testosterone etc.);
3) SD/Lyme – Mino./clindy I.V's and treating for suspected babesia (using Flagyl, Zithro and soon to be starting Mepron). Will also repeat Lyme tests in New Year and change protocol accordingly;
4) Yeast – upped probiotics and taking Diflucan.
5) Exercise
6) Supplements – on loads (especially enzymes, probiotics) and addressing mineral imbalances.
7) Removed all mercury fillings.
8) Heavy metal toxicity being addressed.

Here's what I need to work on:
1) Strep titre – still high. Will be upping zithro to daily to knock this down;
2) Stress – have lots! Needs work!
3) Getting back into regular saunas.
4) Balancing pH (and definitely eating more veggies)

So I guess my questions are:
1) Is this just how AP works? Is it normal to still get these intense flares?
2) Could it be herxing?
3) Do I entertain the thought of being on other meds in the short term? I know the first couple of years are the most crucial in terms of organ damage. Should I be adding Plaquenil or something else right now to get over the hump?
4) Am I missing something that needs to be addressed?

Sorry for the long winded post. But I am wracking my brain trying to figure out what else I could be doing. I am very proactive and determined and doing whatever it takes so I just want to make sure I haven't missed something along the way. Thank you kindly for your time. I am very grateful for your valued opinions!

Mumof3,

Your regimens above are very impressive, and so is your progress.  Just a little brainstorming below:

The timing of the flares, is this anywhere near your monthly cycle?  If so, you might read/search about hormone involvement affecting this.

I believe as long as your are detoxing, it will be natural for you to have the flares… the body MUST process all the die-off resulting from your body healing — especially expelling the heavy metals and the acidic waste products… which must occur for your body to heal.  Find and read about Selenium while doing metal detox, if that is not in your list already. 

It appears to me that with the healthy modifications/detoxing your liver can be overloaded and need some assistance in carrying the load of toxins out of the body.  Psyllium, and a few other products, are said to be VERY helpful in trapping toxins each day and moving them out of the body.  If we don't have some type of fiber like this, the toxins can get siphoned back from the bowel, and circulate all over again throughout the body. (Dr. Ritchie Shoemaker's work, etc.)

Are you including EFA's (from healthy fats like fish, flax, etc.)?  These are essential and the body cannot make them.  They have a very positive effect on inflammation and cells, and much more.  http://www.arthritistrust.org and then click on Articles Important.  An alphabetical list of articles will show.  Look for Essential Fatty Acids Are Essential. 

Do a search on RBF BB for:  Magnesium Deficiency Braun
If you don't find the link to her paper, let me know.  Also, MagChlor85 hopefully can be found in a post.  Magnesium deficiency, when potential heart/stroke patients go to the ER, is one of the first things they test for;otherwise, we may never hear it mentioned at our doctor appointments.  (In the process of your detoxing of metals, and acidic wastes that  result from upping your alkaline pH, no doubt many of your minerals have had to be used by the body to neutralize these acids so they can “safely” be excreted.  You may be running on empty with some of them.  Sherry Rogers has recommended in one of her books that Pain & Stress Center-San Antonio has some of her preferred products.  Learning about MagChlor85 drops in juice OR in water with lemon and stevia, has worked wonders for several of my family (even hot flashes) and for myself, even finally helping to keep my pH consistently in a healthy zone where it is not only normal, but slightly alkaline, so more toxic wastes can be dumped ongoing.   Magnesium deficiency has been found to be involved in some athletes' deaths or sudden onset of necessity to go to ER.  Dr. PB wrote in her paper on Mag Deficiency that sometimes it is necessary for patients to have IV magnesium for a while.  I'd contemplated doing this, but then I found the MagChlor85 was the closest thing to IVs available during the past year when I  began ordering it.

Liver Detoxification, Phase 1 & Phase 2 — Have you had your liver's ability to detox analyzed?  I never have, but I'd bet I'm lacking an inate ability to do this.  Some board members over the years have shared with me that they had this done, and had learned they lacked this  capability.  (Short of doing this, you might regularly drink the Lemon/Olive Oil Drink, as that has been awesome for many patients to assist the liver with detoxification.  The link is on the board.  The best info I found on this (back about 1997-98 was a link with Keep Hope Alive in it.  It also has good information about Raynaud's, etc., that many on the board have problems with.  Lecithin granules added to the drink has been shown also to be VERY helpful. 

And, think sublingual B Complex Vitamins …. I've been using Total B the past several months.  If you'll read or re-read all the things B vitamins do in our bodies, we'll probably begin thinking of them and taking them FIRST.

Enough for now — you're going to find your answers!! 

AF 

 

 

[Mumof3]

Thank you very much AF for responding. I really appreciate the amount of thought and time that went into your response. I am very grateful. You have certainly given me a lot to investigate and think about.

The flares don't seem to coincide with my monthly cycle which was the first thing that came to mind. However, my hormones are out of whack so I know that it is not helping me. I am struggling to get my thyroid balanced with Armour so I am now taking eltroxin as well. My testosterone is low. I am now using a progesterone cream with testosterone to help balance things out.

I did have my liver's ability to detox analyzed since my doctor thought I was slow at detoxing. However, my results were suprisingly good. Having said that, I have a lot to detox from (die-off and heavy metals) and probably need assistance with diet/supplements. I will definitely up my intake of the lemon/olive oil drink and try adding lecithin granules. Great article by the way (Keep Hope Alive). It was amazing to read how much of a difference the drink and diet can make.

I do take a lot magnesium glycinate daily. My doctor is a huge believer in magnesium supplementation and believes most people with AI diseases are low in magnesium. I will check out MagChlor 85. I also take a high quality B complex vitamin and pharmaceutical grade Fish Oils.

I will look into selenium and psyllium as well to help with the detox. I know that I need to really work on balancing my hormones and detoxing as I haven't been very vigilant in using my sauna or the lemon/olive oil drink etc. I haven't been working on balance on my pH either which I think is crucial.

Thanks again for your assistance. I am very grateful!

[Author]

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