Severe muscle pain

Submitted by horses12 on Wed, 2010-03-17 16:21

Hello everyone,

 I thought it was time to post my treatment update. I have been treated under a diffrent doctor since the end of September. During that visit I was treated for healing my gut and to titrate my vitamin D levels to at least 5,000iu's. The titration was difficult at first due to increase die off symptoms.

 Gut biofilms have become an issue as well. My doctor informed me that these biofilms provide a matrix that protect a wide array of pathogens. Taking antibiotics alone may not be able to reach all the bacteria within the biofilms. As a result, the pathogens that reside in your gut can predominate over the good bacteria and cause yeast. I could not take any antibiotics without having my tongue turn white with yeast. I tried the InterfasePluse with the EDTA , but found it over whelming if not taking evryother day and sometimes every three.

 I also have started taking Amoxicillin and then one week later Azithromycin. It seems that the Azithromycin is causing severe die off on the days taken. I have also started doing half pulses, once with Flagyl and the next pulse I tried the Tinidazole. My schedule is to do all these antibiotics at half dose to wean down the cpn load and yet kill it at all phases. My doctor feels this is the best start for me because I am dealing with many complex issues in my treatment

My symptoms have been a lot of brain fog, dizziness, and inflammation. It seems my legs and muscles are the most effected.

My next addition will be to chelate my heavy metals.

Many mountains to still climb.....but I plan on making it to the top.

 

Thank you to all who post along the way for encouragement. It's so helpful to the ones who are still at the lower end of the mountain.

Bonnie

Bonnie, you are such a trooper, thanks for your update blog.  You will surely make it to the top and you have supportive guidance of the best quality. 

It seems to me that you are in some regards already into the chelation of some of your heavy metal toxicity with the use of the EDTA.  Today I was watching with more detail, the AutismOne 2009 DVD with Dr. Yasko, this DVD is a broad overview, less detailed regading the nutrigenomic connection and specific mutations that some of her material presents, the topic is, Assessment of Metals and Microbes as a function of nutrigenomc Profiling,  and the details about how the gut bacteria (both arerobic and anerobic bacteria types) sequester Metals between their cell walls of which they have an inner and an outer, and the bacteria's use of these metals as protection for their cell wall integrity. 

I would say it is facinating, that is unless you have the chance of harboring them in your gut and many of us humans do.  It makes so much sense considering the difficulty that some have getting rid of c. difficile and yeast, and other with less of a metal toxicity breeze through without any gut issues at all, both being just as vigilant about pro-biotics yet some seemingly not keeping up with the situation.  

I wonder about your muscular pain and what part of your puzzle might give some respite from it?   For Magnesium I have switched ot the powder variety for improved absorption, and it is a Magnesium citrate formulation, I am using the Natural Calm product and I like the Organic Sweet Lemon Flavor as a night time dose and warm drink, this has been enough to keep my foot cramps away.  

My study of the Yasko material has found that calcium can be problematic as a high dose supplement, and that Magnesium to calcium is best at 2:1 ratio.  Magnesium/B6/and folate I would assume you have these bases covered.  Is your B6 in the more active form of p-5-p?  You might check with your practitioner for some suggestions of preference.   

I am going to look into changing my source of supplementforms of supplement for B12, B6 and folate as soon as I know what form of folate and B12 fits my patterns.

Also I have begun to understand the use of the gluten free casein free dietary approach.  It goes beyond any celiac tendencies such as extreme flatulence which has been my familial tendency with gluten based products, and enough to keep me adherent for years, however with the abx tx and the deminished gut flora, gas became a much smaller incentive.

The GFCFdiet addresses the relationship of glutamate (which is prevalent in gluten based food products and more) to glutamin then tranformed on to GABA, imbalances of glutamate/gutamin result in imbalances of GABA and can result in metal focus issues and mood disturbances.  

I am so convinced that I am once again going strictly gluten free/casein free, after being tested in a number of ways and finding that my genetics do not rule out celiac, but are not conclusive either,  I have been less vigilant in the avoidance of gluten since that testing about a year ago, and have let small amounts slip in here and there.   

One interesting factoid is that many of those super bright (yes frequently behaviorally challenged and sometimes speechless autisic children) have high numbers of glutamate receptors and they are full to bursting and this decreases the GABA which acts to put the spaces between the words, some of those kids can communicate by typing but cannot verbalize, for me that was how some of my brainfog felt at times, there is so much detail to this approach that it is mind boggling.  

And here is the thing that has convinced me to get strong again about GFCF diet, excess glutamate are fueled by calcium to be neurotoxic and cause demylination of nerves.  To re-mylinate nerves much needs to be brought back into balance.  And this is based on the genetic variants of the person involved so this is applicable to MSers as well and could have one wondering why some re-mylinate better than others on our CAP.    Infections both bacterial (more aligned with aluminum) and viral (more aligned with heavy metals) toxicities (from the environment and also in these childrens cases sparked by the metals in vaccinations, of which there are sooo many these days) plus the genetic tendencies if one has them, all come together to tip the scale towards disease. 

Some of us are accidents waiting to happen, even an extreme stressful event (such as a loss) can be the precipitating factor that starts the slippery slope, if one has the right set up, which might explains why some of us go down fast with a CPn infection, and some progress more slowly over time, at least this makes sense to me for those with CFS type presentation, and the poor methylation processes that some of CFS and some MSers are finding that we have to work with.  This supports the ultra strong reactions to die off, some seem to have more difficulty getting the neurotoxins/endotoxins out of our system effciently and suffer the effects in a stronger untoward way.

Louise  

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Hello, Bonnie (B) Image removed.,

Hopefully there are others here who have experienced the extreme leg pain that you are and can tell you what has helped them. As I mentioned, I had extreme stiffness and joint pain, but not necessarily muscle pain.

Were you advised to minimalize the magnesium (as I was) due to the biofilm issue?  Maybe a bit of Ibuprofen occasionally as recommended by Dr. Stratton?  Do epsom salt baths help at all?   High dose vit C. -- did that have any affect on your legsl?

You are doing great... keep your eye on the vista!

JeanneRoz

 

 

 

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Bonnie, I'm taking EDTA, too, for lead removal and for biofilm breakdown. One of my symptoms of the lead was charlie horses in my legs. I'm not taking magnesium or calcium, in case they would interfere with the EDTA.

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Hi Bonnie, thanks for keeping us posted on your progress- it especially helps for people like me who are new! I have read that to break down biofilm that both nattokinase and lumbrokinase is used with Lyme patients..so I thought I would throw that in for what it might be worht. On the issue of muscle pain, I have suffered that for years with fibromyalgia and have been helped with quercitin and bromelain- it ay be wortha try if you have not tried already as they are natural anti inflamatories. And thanks Louise, I enjoyed your information and explanation on mehtylation and genetic profiles. It is a fascinating area of study and perhaps starts to explain the differences in our reactions and progress on protocols ..and wouldn't it be great to think that testing might take out some of the guess work in getting supplements the right and tailored for the individual- without the hit and miss approach. Bliss. Suzanne
FMS/ME dx 2001. Started Wheldon Protocol 16 Jan. '10. Mino 100mg q 24 h. Roxy 150mg q 12h. Cholestyramine, LDN 0.75mg q 24 h. prophylactic migraine-topamax 75mg q 24h. migraines, headache, fatigue, sleep problems, body aches

Hi Jeanne & Louise,

Calcium is as bad for biofilms as magnesium, and less important for human health.  I would never take calcium (vitamin D+K2 supplementation eliminates any need for that), but magnesium I would seriously consider.  If I had cramps I'd certainly try magnesium plus potassium (in the form of bananas). 

Gluten free is extremely important.  You don't have to be celiac to be damaged by wheat.

Hi Bonnie,

Is your brain fog worse after a meal?  I used to have to lie down for 2 hours after a meal, especially one with plant foods.  I believe that was due to gut pathogens, mainly fungi, feeding on the food and spilling toxins and bacteria into the body.

Best, Paul

Blogger at http://perfecthealthdiet.com. 17-year chronic illness cured with diet and antibiotics, nearly fully recovered.

I wanted to add a comment about biofilm breakdown also.  My doc was pretty knowledgeable about it so he started me on Lumbrokinase and EDTA powder.  He said the optimum was to take it on an empty stomach 15 minutes before taking the anti-biotics (which means I also eat at that point because the Doxy kills my stomach).  Interfase Plus is a combination of enzymes (like Lumbrokinase) and EDTA...so just easier because it is one product.  What confuses me ... is that I read later you should supplement with minerals and calcium/magnesium away from the Interfase Plus/abx combination because you are depleting minerals, etc with your use of the product.  So it almost suggests that the action of the Interfase Plus is very quick...breaks down the biofilms and allows the abx to do it's work.  It's confusing though...seems you wouldn't want to supplement later - you would be adding back to the biofilms.  Sheezzz...   I wanted to also mention that I had testing done and I did not have heavy metal toxicity of any kind... so the biofilm busters seem important even if you don't have a toxic level in the body.  If anybody understand this, I'd love to know if I should be supplementing with a mineral product.  I would do it at bedtime since that is far away from my abx.

Perhaps your provider would have the best suggestion about what minerals and when to take them for your self, since he seems knowledgable about the EDTA. 

My thought would be to take what minerals that might be suggested, about 8 - 12 hours after the EDTA giving that time to work and move down through the GI track. 

I do agree with PaulJ regarding calcium for myself, I have stopped it and am relying on dark green leafy veggies.   I do supplement with the VitD3 (high dose see my signature) and K2, some physicians are using the K2 supplement now, unless you have clotting tendencies, which some folks with heavy metals may have depending on their genetics perhaps.   

Nutrtional advice certainly varies and changes, sometimes quickly, a conundrum at times.    Please let us know what you find out and decide to do in your situation.   Louise

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

 jeanneroz, ıf I don't misremember you are magnesium deficient. So you should correct your deficiency first, then you may consider to minimalize mg supplementation. You should be carefull about ıron supplementation especially.

 yılmaz.

KEREM'S TAKECARER;

Suspıcıon of MS (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

Seems like your blog has been hijacked Bonnie.... sorry.

Thanks for the concern, Yilmaz. Yes I am at the low end of magnesium and iron.  I do not regularly supplement either (magnesium or iron) as I truly believe the biofilms,yeast and pathogens are taking it from my body (which technically one would think should be reason enough to supplement but on the other hand would be feeding the beasties).   I do understand the importance of magnesium for the proper functioning of the body and my levels are monitored regularly.  I stopped supplementing my calcium quite some time ago.  Hopefully, as my yeast and biofilm issues get better my levels of these will improve as well. 

I, too, tried the InterFase Plus and also had severe  reactions to it so had to stop (need to post an update) another confirmation, besides my testing,   I am dealing with more issues  (metals, biofilms, possibly other undetected bacteria/pathogens) ,  in addition to  my high systemic yeast)   I am working on the yeast and biofilms (and must say am having a difficult time with that die-off situation now as well) with other adjuncts first (without the EDTA).

 For those of you taking the EDTA with no affect,  seems to be  a good indicator you probably aren't dealing with these issues... it is nasty stuff!

JeanneRoz

 

JeanneRoz

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Louise, if you have clotting issues it is a reasonable to be careful but not a reason to avoid vitamin K2.  K2 is needed for healthy vessels and helps prevent vascular calcification and dangerous clots like the one that killed your father. 

Vitamin K2 dosage should be increased only slowly, so that the body's production of fibinolytic enzymes can keep up.  100 mcg daily doses will not create a clotting problem.  4 mg per day might if you started suddenly.  Dosage could be gradually built up.  The Japanese did a clinical trial of 45 mg/day K2 in heart disease patients with lots of plaque, and reported no problems.

However, do avoid vitamin K1 which is more likely to increase clotting factors and is less helpful against atherosclerosis, cancer, osteoporosis, and the other diseases addressed by vitamin K2.

Paul

Blogger at http://perfecthealthdiet.com. 17-year chronic illness cured with diet and antibiotics, nearly fully recovered.

Hi Paul, It was Kimberly that had the familial history regarding a parents clotting situation.  

That is not my set up and I have had not trouble with the K2 been taking it since hm  I found  out about it's atributes I think last September.   

I had been taking a lesser amount of K supplement the Solgar brand, for a few months before that because it had been in a bone supplement that I had been taking for several years.  The K2 supplement I take now is from Life Extention Foundation, here is the formulation at this link:

http://www.lef.org/Vitamins-Supplements/Item01224/Super-K-with-Advanced-K2-Complex.html

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support