The Elephant(s) in My Room – Blog Update

Submitted by jeanneroz on Mon, 2011-08-22 00:16

I haven't posted much and my last blog update was in May of this year. I wish the reasons were because I was enjoying a recovery and had my health back, but it's not.   I now join the ranks of some of the others here who came to this site about the time I did.  

 

Last week I had Bioenergetic Testing done which indicated I have:  Bartonella Henselae, Babesia Nosodes, Mycoplasma Fermentes, Borrelia Burgdorferi and high levels of systemic yeast (as well as EBV, HHV-6 and CPN) -- "my elephants" and reasons for not recovering. 

 

My doctor  who's been with me on this journey abruptly left the end of June (health reasons) leaving me in a panic. He did test me for Lyme in 2007, but it was before I started ABX; and, since I have probably had it for a very long time (I'm guessing over 25 years) it's sero-negative.  As an aside, my ex-husband, with whom I camped and fished with years ago was (last I heard) in a wheel chair "diagnosed" with Parkinson (I'm certain he's probably misdiagnosed)

 

 I was able to be accepted by another doctor in this clinic and am fortunate as they treat holistically (bio-identical hormones, glutathione IV's etc.), but am unsure of his willingness to give me carte blanche with antibiotics as I have had over these years. Everything just seemed to fall into place...so, with the support and encouragement of a wonderful friend  I have an appt. with an LLMD who trained under Dr. Burasscano on 8/30 and am trying to maintain until then.

 

I have been two months without ABX ( I did take 3 days of Azith to see if my knee pain would go away) and am going somewhat downhill, joint pain, brain fog, weakness, major heart palpitations. The fatigue has gotten progressively worse. 

 

I may have brought the CPN titres down, but it seems I was keeping the other co-infections simmering..... not enough to kill them off but rather at a "low simmer".  Sigh.

 

I have had "windows" of wellness over this time period but nothing has been static for more than a few weeks at a time.  I'll be honest, I am very frustrated...  I still have severe fatigue, bowel/digestive issues, adrenal fatigue, have developed weird skin manifestations, as well as what appears to be Rosacea on my face, breathing/allergy problems and all the other ailments listed for CFIDS/FM.

 

On a positive note, my CPN titres (IgA and IgM) have dropped to normal after 4 years of ABX.  My IgG has dropped considerably, but is still "high". 

 

I reflect back on how difficult this treatment was for me for about two years - it put me in bed, a wheel chair and pretty much housebound.    I kept plugging away thinking "next month I'll be better".....  It all makes sense now... damn elephants!   When I find out more.... I'll post again. 

In the meantime everyone, be well and blessed.

 

JeanneRoz

 

 

Been wondering where you'd gotten off to! Okay, so now that you have some answers, what's the plan?

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hello Jeanne, I m sorry you still feel so bad.

Hope your health will improve when you start treating other infections as well. Did you test your infections also by blood work? I wonder how bioenergetic testing works..

Stratton/Wheldon protocol 02/2006 - 10/11 for CFS and many problems 30 years

D W

What is Bioenergetic testing? I had never heard of it, and a brief Internet search wasn't very reassuring.
D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

Re Bowel/digestive issues.

I've been using FOS (fructo-oligosacharides) for 2 1/2 weeks as well as usual probiotics. Prior to starting it I'd been having reflux, now it's not happening at all.

I'm sure my nutrient absorption has been impaired for a long time. Recently feeling brighter & a bit more lively, so presume the FOS is helping my body make better use of a high quality diet.

Best, Clare

 

 

 

 

 

I'm glad to hear from you again, but wish it was with better news.

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)

D W

I should be grateful if you could tell me the principles behind Bioenergetic Testing. Is it serological? Does it have controls? In what units are its results measured? Are there any citations for its use in peer-reviewed scientific literature? I looked up the search term “bioenergetic testing” in Pubmed (the US National Library of Medicine) and the phrase was not found.

I did find this, though, on youtube:

http://www.youtube.com/watch?v=3ZgJ5awk2oQ Are pathogens really to be found in this manner? If so, the science isn’t clear to me. I’m not being at all impolite, but I really would like to know the rationale behind this diagnostic procedure.

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

Well, I am so sorry to hear all of this. You might like to know I also found out I had Lyme last year as well as Bartonella. I am currently working with a local naturopath but still keeping on with Dr. Powell. Will tell you what has worked for me. The naturopath put me on Byron White's formulas for Bartonella, mold and now Lyme. They really seem to work and you can take them with abx. My big issue right now is mold. I worked in a mold infested classroom for years and it was making me sick. Fortunately, had to move out this summer as they tore the building down. I cannot stress this strongly enough. Mold exposure can create all the these symptoms you are experiencing. I know, as I have had them all. Lyme can ve the trigger but there is also a genetic component. About 24% of the population have genes that make them suseptible to mold illness. Even if you cannot see it, it may be in your, house, your car or your workplace. Mycotoxins will create a chronic immune system activation and make you miserable. Some molds will attack the nerves and brain, eyesight and hearing as well as balance. You can take a visual test on Shoemaker's site that may help diagnose a mold exposure. http://www.surviving mold.com You cannot afford to ignore this as mold is a growing problem all over the planet. ( no pun intended) Dr. Shoemaker thinks it may be because molds have mutated due to our use of fungicides like Benomyl (now banned- but the damage is done). It's in his book Surviving Mold. Check it out and see if there may be a possibility it is a factor in your illness. Raven The best info is on Survivingmold.com a website by Dr. Ritchie Shoemaker who is the US authority on treatingmycotoxin illnesses.

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

Thanks for the responses and support.  My plan for now?   I am off ABX and trying to maintain until I have my appointment on August 30th with the LLMD.   I have gone downhill being off the antibiotics and believe it is the Bb and co-infections (most seriously Babesia) causing the worst of my symptoms, I don’t know, I guess I’ll find out.  Brief recap:   ·         I followed the Stratton Protocol for 4 years and kept plugging away experiencing many weird and varied symptoms along the way, some of which I ended up in the emergency room (to no avail, LOL).    I have also learned what is NOT wrong with me according to standard allopathic testing ;) ·         Even though I haven’t posted much lately I have continued to read and follow the journeys of the others here. I can say I have tried most of the recommendations EXCEPT calcium pyruvate, caffeine, methylation testing.  ·         I did rotate out Azith for Roxi in about the third year, but switched back.  I never used Flagyl, but rather Tini.  

·          I was able to tolerate the Tini continuously for about 10-15 days…

·         I tried Minocycline for two days and wanted to curl up in a ball….. obviously it crossed the BBB!

·         I switched to Clarithromycin in the Spring of 2011 and bam, it hit me big time in the colon and incapacitated me for several weeks.

·         I have had major yeast issues for over two years (even though I took probiotics, etc.) and it reached a point this Spring of almost NO good bacteria in my gut.

·         I have had some improvements but am still not normal, still “disabled” and unable to work, I have a difficult time even keeping up my home, I have no endurance, I cannot tolerate heat, have orthostatic hypotension (even with meds, support hose, etc.)  I basically still do not have a normal life. 

·         Since I have been off the ABX my brain frog, joint pain, breathing, and fatigue are back and worse.

·         Raven, yes I am familiar with your information and yes I have mold issues.  I actually took the visual test on Shoemaker’s site a couple of years ago-- it indicated I had issues.  The LLMD I am going to uses the Byron White products and I am hoping she will recommend I start with those (at least the A-Fng) as I do not believe my body can handle ABX at this time.  I do live in a high mold area… L  I have followed your posts and advice, too, over these years. For those of you who have spent your time reading/researching (as I have to try and get control of your health/life) – hopefully you will conclude that if you don’t get  better on the ABX, (and as with me my CPN titres have gone down), something else is obviously going on. IMO, you can only say this if you have followed this protocol diligently and for more than just a few months.   (Interesting note is that many in the Lyme community believe CPN is a “co-infection” of Lyme  [okay, I’m not putting this here to start an argument, so please don’t J]  There are so many variables that can play into your recovery  
DW – the Bioenergetic Testing (or it is also called EAV testing) is probably not something most allopathics believe in.  It is based on Chinese Traditional Medicine and does use the body’s energy and acupuncture meridians.  It was pioneered by German physician Reinhold Voll in 1953 (whom many “regular doc’s probably considered a quack).  “Traditional Chinese Medicine theory is based on a number of philosophical frameworks including the Theory of Yin-yang, the Five Elements, the human body Meridian system, Zang Fu theory, and others. Diagnosis and treatment are conducted with reference to these concepts.-Electrodermal Testing: Electrodermal Testing instruments are a synthesis of advanced electrical and computer technology and the ancient concepts of Chinese medicine. Known as "chi" in traditional Chinese medicine, bioelectric energy is said to flow through a series of circuits called meridians which can be affected by stimulating the topical acupuncture points of the body. Although the theory of life-energy (called the vital force in European natural medicine) seems very abstract to logical Western thinking, European researchers have validated the existence of acupuncture points by electrical conductivity readings. In 1951, a researcher named Nivoyet established that acupuncture points do in fact have a slightly lower skin resistance than points elsewhere on the body's surface. Since these topical acupuncture points have a lower electrical resistance compared with other areas on the skin, their conductivity as measured by changes in skin resistance is higher. It is this particularity that is the basis of our ability to electrically read the energy field of the corresponding organs and tissues. In 1952, Dr. Walter Schmidt examined patients with a variety of known disorders including heart problems, stomach ulcers, etc. He examined the corresponding acupuncture points using electrical current and established that resistance at the relevant acupuncture point increased when the appropriate organ was malfunctioning. In contrast, this resistance remained constant when organ function was not impaired. In 1953, Dr. Reinhold Voll, a German physician, was the first to consolidate the information from previous research and develop a systematic approach for evaluating the body through skin resistance measurements. Over the last 45 years, German research has led to Electrodermal Testing or Screening being utilized to aid in the determination of the appropriate therapy for the patient as well as to evaluate disturbances in the body.”
This testing specifically indicated which of the infections I have in my joints and CNS, vagas nerve, as well as my gut, it was well worth the $200 IMO.  The woman who did my testing has done this for over 20 years…. She has worked with Dr. Yasko, as well as other M.D.’s and she previously was a nurse.    It will be interesting to compare the Bioenergetic results to the Igenex testing I will most likely have done by the LLMD (which will be about 5 times as expensive).  As a side note:  the LLMD I am going to refers people to the Bioenergetic testing (she believes in it), but still does the “allopathic” testing to protect herself from the legalities and insurance beauacrocies)  

Now, I’m doing an attitude adjustment, taking my supplements and trying to comply with the Specific Carbohydrate Diet (its tough!) and  just plugging away until my appointment on the 30th.

Be well,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

JeanneRoz

If you were on the Stratton protocol, then you were on Rifampin - correct?

I remember back in my very foggy days being told that we must eliminate (I think it was) Babesia first.  And I think it included Rifampin.

You deserve to get better.  I hope the next thing works.

Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

D W

Thanks for your explanation, JeanneRoz; I appreciate it, and I hope all goes well for you.
D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

Jeanne, I  am convinced that all of us are a hodgpoge of multipule levels of varius infections. Their are many lyme specialists who think out of the box and are using varius testing not used by conventional medicine. Let's look at CPN, lyme, Bartonella and other infections..these are not seen as "normal" to many highly educated physicians. That is why this site has helped many find their way to better health. It's impprtant to realize that their are different antibiotics needed to treat the "other infections". I have CPN and Dr. Powell was sure I had something else going on that was "blocking" my treatment sucess. It was through Bioenergetic Testing and IGENX..I found the Bartonella.

I am glad you have found the "Elephants"...

 

Hugs

started Wheldon cap 4/21/08 for Cpn, CMV, EBV, CFS. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplements,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

I am convinced that all of us are a hodg poge of multiple levels of various infections, too. I wonder if it is possible to have only cpn. I wish we knew which coinfections were present an the beginnig and not after years of cap.

Stratton/Wheldon protocol 02/2006 - 10/11 for CFS and many problems 30 years