Louise's Blog - Initial Blog Page

Submitted by Louise on Thu, 2007-11-01 10:34
Page for Louise's blog.

Several years ago I saw an announcement of an educational presentation onon Lyme Disease. That was in May 2006. And I will be forever thankful for attending that event in 2006.

I had been unrelentingly fatigued increasingly for years. I had cleaned up my diet with my 1st pregnancy so many years ago now, eliminating refined sugars and taking a whole foods approach to health in the 70's, eliminating wheat flour and becoming gluten free in the mid 1980's, Omega-3 Zone diet in the late 1990's, and added supplements for mitochondrial support in the 2000's.

All of these approach's helped to stabilize me.I recall being told by one medical practitioner in the distant pastthat some people are just more tired than others.Feeling well and whole is part of one big picture and we need all the parts.

Over the years, I had participated in long term alternative therapies for my symptoms, starting in the early 1980's, all of which I need to say were and still are helpful. So helpful to myself they were that I have learned to provide a number of them to others.

While energy challenged, I managed to make my way through three professional Educational programs, all with licensing and certification examinations and credentialing. In retrospect, everything has helped me to improve or plateau to a certain extent and for a period of time.

Then as the progression of chronic persistent parasitic disease goes in general, the trudging up hill has just continued to get heavier, the brain foggier, the dysfunction greater and the compensation for my inabilities larger. As one can find, in most personal stories of parasitic infections and chronic fatiguing illness goes, from my observation and conversation with those that I have heard their stories. And I have heard many stories. And treated many ailing individuals looking for improvement that allopathic medicine had not been able to relieve.

Back to my story. So the thought that I could have Lyme Disease was in the back of my mind,even before that informative talk. But more so after learning about the nymph phase of the tick and it's ability to transmit infection. Also the stories that I had heard from folks sitting in my treatment room about thedifficulties of getting the "medical community" in general to listen to them seriously, even those who had had frank tick bites, complete with rash and symptoms of illness and fever. At the time it was most disheartening and at a period when I was becoming less and less able to compensate for my decline in normal functioning, I had a huge obstacle to consider how to even investigation of the possibility of a persistent parasitic infection when I had less and less ability to advocate for myself due to decreased ability to function, travel and even speak coherently for myself. So I continued to compensate the best I could. Personally for my self, I had NO RASHES, NO FEVERS, and in retrospect, years later, realized that I had had two nymph stage tick bits that I visually confirmed, but did not know what they were at the time. (And how many missed? as those who have had these tiny form of tick on their skin know, they are totally painless bites, and the nymphs are exceptionally small, until they are engorge they are almost impossible to see, and yet they do have the potential for carrying infection.)

Finally, in May 2007, a full year after my awakening to the possibility that Lyme could be a factor in my incapacity, I heard of a Clinic that would test comprehensively for unrelenting fatigue. I realized that yes, there are lots of reason for unrelenting fatigue.

Many of you have run the gamut of going to numerous of providers, and had many a missed or at least incomplete diagnosis. I personally had used the tactics of not getting any western allopathic diagnosis.

I was still in the same place, as the rest affected folks who had not foundan answer to their declining health and functionality, I needed help and was becoming desperate on many level of my life.The Clinic was a fee for service model. You pay upfront and perhaps your insurance, if you have any, might pay a fraction or not. Same for the lab work which was extensive, covering numerous possible causes for unrelenting fatigue, fibromyalgia, and chronic fatigue syndrome. I felt somewhat sure that the labs would be covered by my plan and it did. To the billable figure of around $5000.00 for the lab analysis' alone.

I paid my 20% of those fees. This alone speaks strongly for empirical treatment, you could have a lot of medication for that price (about 18 pulses of the very pricey Tindamax in the US!

I had my lab testing done in three phases. They first looked at the very common causes of my complaints. The most significant finding for me personally during that first round of testing, was the bacterial parasite, Chlamydia Pneumoniae, a respiratory pathogen. i had never heard of the organism before that time. And that is how I found cpnhelp.org, I was looking for information about that diagnosis. My titer results were significantly high 1:512, for boththe Chlamydia Pneumoniae (Chronic Form) IgG (a more general test and can be cross reactive with other forms of Chlamydia and the Chlamydia Pneumonia titer Specific Antibody, IgA resulted in the same high 1:512.The Chlamydia Pneumonia IgA specifically identifies the species as Chlamydia Pneumoniae from some of it’s cousins.A as far as the active form of Chlamydia Pneumoniae, I was IgM was negative.

I personally believe that for myself, I had a strong focus of C.Pn.in my hepatic system, it does inhabit liver cells ( as well as many other types of cells in the body including the neurological system), in the liverhepatocytes to a greater percentage and also the Kuppfer cells in the liver and therefore treatment withhigh dose doxycycline is very difficult in this situation, really in any situation where C.Pn. is an infective parasite. Specifically, too much die-off to fast and you get too sick, almost to sick to move from the secondary effects of the abx therapy. If I had had to have a life and needed to function I could not have done it. For me, I had already lost the ability to have an effective life and my life function was disfunctional and minimal so I just trusted that this was the way through the forest and there were not any other paths to take! I was so fogged once I started the high dose doxycycline that I could not figure out how to join the site as strange as that may sound. So to say again, I was first started on Doxycycline 200 mg twice a day.(This dosage is NOT the protocol that is discussed on this forum). This high dose is often given for Lyme Disease and is considered appropriate by LLMD as those who know had assured me. Borrelia burgdorferi (Bb, Lyme) HAD NOT been documented with that first round of blood tests as being one of my infective bacterial organisms. It was not tested for this until my second round of blood work which occrured 3 - 4 weeks post start of this Doxycycline dosage. Some LLMD might call this an antibiotic challenge. I believe that my second course of blood work was drawn because I was so very much worse and not had a bit of improvement by the Doxyclycline 200 mg twice a day therapy.

This second round of blood work included a complete infectious panel.All of the lyme co-infection titers were drawn as well as the standardWestern Blot for lyme and many viral causes of fatigue were tested to rule out coexisting causes of fatigue.I tested positive by Western Blot for a reactivated infection by CDC criteria on thecurrently accepted band identification of IgM. My IgG was negative and I had no symptoms of active infection. Clearly I had had both C.Pn. and Bb cohabitating in my body for quite some time.

This is the important part of my personal story that I really want to share for your consideration and wellbeing. Personally, I consider my C.Pn. my primary infection. It had has been brewing formany, many, years, possibly since the early 1970's or at least the late 1980's andearly 1990's. So I likely had a bacterial load when I met the Bb bacteria which is likely as early as 1995 or as late as 2003. My C.Pn. was a pre-borrelia infection. The best part of all this information is for me, the same treatment will cover both of my bacterial parasite infections.The life cycle of the C.Pn. makes it easy for Bb to infect a cell because upon it'smaturation it leaves an opening in the cell that the Bb can easily and swiftly penetrate and set up it's additional occupancy in that cell. Yet C.Pn. is an infection that can be as devastating as Lyme Disease. When an individual, such as myself, has a heavy bacterial load from C.Pn (C. Pneumoniae)(Chlamydia Pneumoniae) which is a parasitic bacterial organism that enters the body generally through the respiratory track (lungs and nasal passages) (not to be confused with its cousin C.Trachomatis the gentital pathogen, however the same protocol can be effective for this cousin as I understand it and many other parasitic, intracelluar bacterial infections including Lyme Disease). And that is the good news here! The aggressive doses of Doxycycline 200 mg twice a day, will cause massive die-off of both the C.Pn. and Bb and cause overwhelming symptoms in numerous organ systems depending on the symptomatology of the individual.C.Pn. is as insidious and pervasive once it is established on an intracellular levelwithin a body just as as is Lyme Disease.

C.Pn. has now become know as a major parasitic organism in it's own right. It’s prevalence is likely to be far greater and it’s impact perhap equal to or more devastating as well if one considers that the sheer number of individuals infected and the diversity of conditions being implicated as this website makes evident.

I won't take your time to tell you how impaired I became for the 14 weeks that I took Doxycycline at the 200 mg twice a day high dose strength, it would be a scare story at best, just to say, I did temporarily become many, many times, worse. My response would have caused many to have stopped or switched antibiotics, that would not have been the best answer.

I want to assure you that I do still take Doxycycline daily now at a moderate dosage of 100 mg twice a day (a level that inhibits replication and allows for natural apoptosis (normal cellular replacement) for C.Pn. Doxycycline is safe at the 100 mg twice a day level if you have C.Pn.) I have since added the macrolide class antibiotic, as well as intermittent azole class antimicrobial pulses to deal with both C.Pn. and Lyme Bb.

My liver suffered the consequences of the High Dose Doxy in a way that folks without the C.Pn factor may not perhaps. It would seem prudent to treat everyone with the respect of the moderate dosages described in the Wheldon Combination Antibioitc Protocol. Even when testing for C.Pn. as with testing for Lyme, C.Pn. is often not seen by the immune system and does not test postitive, there are many false negatives for both C.Pn. and Borrelia B.

There are similarities amongst these stealth bacterial organisms. How does anyone know however, without spending much precious amounts of money, the full range of persistent, parasitic bacterial and viral organisms that they are harboring in their bodies? A question worth pondering. And if you do test the tests and test negative it could well be false negatives.

So, What is this post really about I ask myself?

I want to share that I am so, so, so, much better now as I continue on this simple yet elegant and effective Wheldon Combination antibiotic protocol.

The Wheldon Variation of Combination Antibiotic Protocol (CAP), which consists of the following;

Doxycycline 100 mg by mouth, twice a day.

Azythromycin 250 mg three times a week, (or another macrolide class antibiotic such as clarithromycin (Biaxin), available here in the US, or Roxithromycin 150 mg. twice a day,available outside the US),

Two of these abx are taken continuously together,after they are started. First one is worked up to full dosage, generally Doxycycline first.

Then the second is added to the first and again working it up to the full dosage.

After the two abx are tolerated well, ( which can be somewhere between the recommended three month marker and extending to six or more months for some folks with CFS/ME, FMS and others.) Then these two abx are continued as Periodic Pulses of Flagyl are instituted to be given along with the two abx. These repeated dosages of Flagyl Pulses,are taken every 3 - 4 weeks each Flagyl pulse is taken for a period of 5 days at a dose of 400 mg by mouth, three time a day, only for 5 days in a row.Followed by a resting phase from the Flagyl only (again to say that the two antibiotics are always taken continuously.)The resting from the dosage of flagyl is to allow for healing on a cellular level particularly after the die-off of the cryptic form of C.Pn. as well as the die-off the cystic for of Bb. C.Pn. also has one more form that is best addressed by the addition of N-Aceytl-Cysteine (NAC), available an over the counter at health food stores,i tis an anti-oxidant that breaks down the EB form of C.Pn. Again, NAC addresses the Elementary Body form of C.Pn. which is the form of C.Pn.that is responsible for it's spread both within the body from cell to cell and from personto person via the respiratory tract. It is generally continued by people post treatment to prevent thereinfection by C.Pn. from the general population as it is very communicable.

People who start NAC, often know that it is working because in their respiratory tracks they may begin to experience some symptoms such as an upper respiratory infection or a bad cold, like nasal secretions, sneezing, sore throat, so convincing that you may think it is a bad cold. Not a conincidence however.

Some people takeNAC it as a pre-test for C.Pn. but, not reacting to it does not rule out the need for it intracellularly (deep within the body and blood). C.Pn. travels on the red blood vessels. That factoid is amazing to me in the implications for it's spread within the body.

This Protocol which is safe as well as and cost effective for C.Pn. (chlamydia Pneumoniae), is also effective for Borrelia burgdorferi (Bb, Lyme) the key to success is to continue this CAP long enough. How long is long enough, likely a number of years continuously.

Of course many consider long term treatment necessary for bacterial Parasitic infections of a variety of types.This approach is based on well documented scientific research data and more supporting information can be found on and from links included at thethe website cpnhelp.org about the Wheldon Variation CAP.

My understanding is tha the aim of the Wheldon CAP protocol in the long term use of abx therapy to address all the varied forms that these persistent bacterial parasitic infections can be morphing into and out from switching back into actively replicating forms.

My personal understanding is that All of the forms of each of my persistent bacterial parasitic infections are being addressed at the same time with a regimen of combination antibiotics at a lower, synchronistially more effective dosage, and that these antibiotics are commonly available, older, safer forms of antibiotics, particularly from the perspective of the safety of the liver, when taken in the already mentioned dosages, moderate dosages.

Taken in this dosage regimen, it will cause the bacterial load to winnow down gently, over time (tortoise style treatment) until these bacteria are polished off over the course of several years. All this has been crafted and designed to happen while I remain on this same consistent protocol as crafted by David B.Wheldon, MD specialist in Medical Microbiology licensed in the United Kingdom (UK). A true gift to humanity in a simply,straight forward approach.

Currently, I am now into my 28th week (7th month) of treatment on the Wheldon Variation of the Combination Antibiotic Protocol that I have described above and am in the midst of my third azole pulse (tiniazole specifically). I can now dance some and sing more and with greater volumn (hopefully on key) and do some fun things in life that I thought were activities that I would likely never revisit. I do have more wellness to strive for and several years more that I anticipate taking this protocol.

I am stronger and brighter now than when I began 8 months ago and I am looking forward to improved wellness in my life as I continue.

I can now perform mental and physical tasks that I had all but lost the capacity to perform.

And I am now blessed by being supervised here in my local area by a licensed medical doctor who considers this protocol very appropriate for my condition.

I want to thank everyone who has contributed to this information filled website and those who have reached out to me and helped me to learn about C.Pn.

Life is good and getting better with my treatment on the Wheldon CAP.

New Years wishes for health and wellness to all.

Louise

CFS/ME. CPn posititve, Bb positive.

Started CAP 6/24/07 Doxy & NAC

11/3/07 Roxithromycin 150mg BID added to Doxy 100mg BID, NAC600mg BID 11/22/07 #2 Tini Pulse - Full pulse 500mg Tinidazole BID x 5 days.

11/26/07 Added Cholestyramine HS for porphoria/Lipo Endotoxins symptoms x 1 week (started during and continued after pulses).

01/01/08 #3 Tinidazole Pulse begun.

 

 

 

 

  • 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

x
  • 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

X

  • 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

xxx

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Louise, that's a good write-up. Thanks. Every patient's story is different, but patterns tend to emerge from them taken all together.

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Currently: doxy & zith -- continuous; metronidazole -- 5 days on, 7 days off.

Get the research results you paid for: support Open Access

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Louise, thanks so much for sharing your story and best wishes for 2008! 

 Nata.

Arthritis, muscle pain & twitching, sinusitis, hypertension, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpn IgG (+), CMV IgG (+), HLA B27 (+). Starting CAP this week!

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxy, Rif, Azith, Bactrim, Mino, Clarith, Flagyl, Amoxicillin. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

The bit about Cpn leaving holes in cells that Lyme can then penetrate isn't right. Cpn does tend to leave holes in cells when it disperses, but it kills those cells in the process; cells can't survive with holes in them. Also, the Lyme spirochete is perfectly capable of corkscrewing its way through intact tissue; it doesn't need any help in penetrating cells. Cpn probably does worsen the progression of any Lyme disease one might catch, but that's by infecting white blood cells and slowing them down, making them worse at disease-fighting (and also making them spreaders of disease).

Hi Norman, if that is all you can say to correct me I feel pretty good about my understanding.  I will have to explore that concept again.  Somewhere in the recesses of my sometimes faultering memory, I do remember seeing that concept, I just cannot substantiate where or the correctiness of my concept.  Currently, I am not so convinced that all CPn infected cells all die with the release of matured EB's. And I don't think that I want to get into a round of proving it yes or no.  This site is vast and the links out are just as prolific.  It may have been through a reading that I arrived at through a link pointed to information outside this site many months ago.

Unfortuantly I did catch Bb and the CD-57 which is a test for it's level of activity, which is specific yet experimental also indicates that it is still there.  But on the whole I am better, enjoying life more in the moment than I have in many years. Mentally, Spiritually, Emotionally and Physically.  What more can I ask for just now, for me that is the point of my treatment, feeling well moment to moment.

Thanks for your feedback both now and in the past.

Louise

CFS/ME. CPn posititve, Bb positive. Started CAP 6/24/07 Doxy & NAC 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tini Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxin sxs x 1 week after pulses.

  • 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

A number of sources I've seen say that the normal thing is for the infected cell to die when Cpn EBs are released. Some cells may manage to survive the release of EBs, but it'd be hard for a cell to survive any length of time with a hole in it. Instead survival would be by the hole closing back up. The extracellular and intracellular fluids are too different for cells to survive their mixing for long.

(I'm certainly not arguing with the idea that the treatment works; it's working for me, too.)

So now this turns a bit non technical. Imagine the EBs bursting out and just as that happens a hungry spirochete seeking shelter is swimming by and in it slips just as the garage door closes so to speak. Now you have dubble trouble and all the less energy to move your muscles as you now have two more beings to feed. Bizzare concept or is it? In any case I am stuck for the moment by both of these master parasites!

I think you really enjoy the search so please look around some more about the life cycle of the CPn and also of the Bb. My question is that when the Bb goes cystic is it intracellular or extracellular and I also recently glanced at a comment that suggests that Bb replicates within the Cystic form too even though it is anarobic phase? Of course this is a side conversation Bb that is, but unfortuantly it is one of my conversations.Image removed. I do feel blessed by my belief that Stratton/Wheldon CAP has the potential to cover both of them.

Louise

CFS/ME.CPn positive.Bb positive.6/14/07WheldonCAPstartedDoxy&NAC.11/3/07 Roxi150mgBIDadded.11/22/07#2Pulse Tindamax(Fasigyn)(Tinidazole)500mg BIDx5d.11/26/07Cholystyramine@HourOfSleepforBrainfog,memory,irriability X7daysPostPulse.01/01/08#3Pulse

  • 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

That could happen, but it'd be a rather rare event, and in any case not one that would matter much, since Borrelia can swim just fine through intact tissue. That's where the expanding rash of Lyme disease comes from: spirochetes traveling through skin, away from the initial bite location. Most bacteria can't do anything like that, which is part of what makes Lyme so dangerous, and makes the rash so specifically diagnostic of Lyme. I don't recall having read anything specific about the spirochete's travel, but I doubt that it respects the boundaries of cells as it makes its journey. Human cells don't have much of a wall to punch through, so that's probably exactly what the spirochetes do. When they're doing that as a matter of course, it doesn't matter much whether one of the cells might already have a hole in it.

I had a look to see what I could find on Borrelia's mode of travel, and came up with this article. The authors grew borreliae in human tonsils (just-removed ones, from some hospital that still does "routine tonsillectomies" -- I'd thought that nobody did that any more, but evidently not), then sliced them up and stained them for spirochetes. They found that most of the spirochetes were extracellular, with a few intracellular. They also found that some had transformed themselves into cysts. (They don't say explicitly whether those were intracellular or extracellular, but it sounds like the latter.) So it looks like I was wrong, and the spirochetes do travel mostly outside cells.

Thanks Louise for the update.

We started about the same time it appears.  I just remembered another thing that has improved.  I have had a yellowish hue to my skin for as long as I can remember noticing.  I had Mono & Hep A, tonsilectomy, wisdom tooth surgery & a car accident within a few years.  I am taking Pau'Darco, liquid & curcumin which both help protect the liver & my skin is yellow no more!!  & to think I thought "that was just the way it was"

Blessings for continued recovery.

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 1-3-08 5th pulse 1 X 375 mg 4day

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

 Thanks for your update Louise. So glad to hear of your success on the CAP.

Following (lightly) your discussion with Norman. All that I've read suggests that release of EB's requires bursting the host cell, but there is so little really known about Cpn, so who knows? On the Borrellia issue, from a cursory scan it seems that cystic forms can be intracellular or extracellular, unlike the Cpn cryptic form which appears to be only intracellular-- it really is an "abberant" form of RB. This paper notes:

 "These forms may exist as either extracellular or intracellular pathogens."
www.lymeinfo.net/medical/LDCysts.pdf

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Louise, an excellent post! I learned alot and felt a reassurance that what I am not alone with what I am experiencing. Soon I am to undergo testing as well, but the good doctor has agreed to begin the doxy regardless.

I will keep an eye out for more of your comprehensive updates!

Best wishes and warm regards,
Corinna

--

May 2008. NACx2400mg, D3x4000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosacea.

Corinna | GFA. Wheldon Protocol: 4–8/08. Can't kill the yeast.