A sample letter to local doctor to convince of abx treatment

Jim,

This is a sample letter my Husband and I sent my doctor when discussing treatment of abxi for MSi.  We thought you could post it somewhere here for others that need to write letters to their doctors.

We think it really helped. 

 

 

 

Dr. {xxxxxx},

I deeply appreciate your willingness to consider supervising me on a long-term, lose dose combination antibiotic regimen to treat my multiple sclerosis diagnosis.  I understand that this protocol is non-conventional, unproven, and is not without risks, including immediate or long-term serious adverse events from antibiotic use.

In spite of MS drug companies’ aggressive marketing messages, the published data show that the conventional disease modifying therapies provide minimal impact on disease progression.  While waiting for the announcement of a miracle drug that works I have actively searched for promising alternative therapies for over {N} years.  During this time I have learned to become very skeptical of the dozens of alternative theories and therapies I have come across.  I have proceeded with caution and have tried a limited number of alternative therapies with some encouraging but limited results.

The relapsing/remitting nature of MS and randomness of disease progression makes objective measurement of therapies difficult.  The stress relief, endorphin impact, and other placebo phenomenon’s also make evaluation challenging.  My understanding of these factors makes me leery of pure anecdotal testimonies, especially where someone has a profit motivation.

From my readings most MS researchers believe that they are dealing with an immunei disorder.  Others believe the immune system attacking the myelini sheath is a symptom of some other underlying cause of MS.  Unfortunately no one has yet discovered the root cause.  Persons are diagnosed with MS because of common symptoms and examination findings but there is convincing arguments that MS suffers as a whole may consist of sub-groups with different underlying causes such that certain therapies may be more effective for certain subsets.

As you well know some bacterial and viral infectionsi share many of the same symptoms as MS.  I understand that I don’t have laboratory evidence of any current measurable infection requiring antibiotics.  I have read theories suggesting that some infections, especially long-term infections, may not be accurately detected by conventional lab tests.  The specific protocol I am asking you to supervise was specifically created to eradicate a CPNi bacterial infection.  But this protocol is similar to that used to eradicate other infections as well.  Proof or identification of a specific infection is not my ultimate objective.  I am interested in empirically discovering if I can experience any disease progression reversal by use of antibiotics. 

During a prior appointment with you I first mentioned my interest in trying an antibiotic regimen.  I subsequently began taking several probiotic supplementsi in preparation for beginning antibiotic therapy.  I would now like to start the antibiotic regimen.  In my last appointment you proposed alternating monthly the use of doxycycline and azithromycin.  But since, after further investigation, I read the importance of not cycling the doxycycline and azithromycin but after 3-4 weeks of starting doxycycline I should add azithromycin and take the two in combination.

Apparently the cyclical long-term stopping and starting use of the individual antibiotics will promote resistance rendering each ineffective.  Also, the protocol works four times more effectively by using both antibiotics in combination because of their synergistic effect.  Each antibiotic targets different steps in the bacterial protein synthesis pathway.  Their primary effect is not to directly kill bacteria but instead to diffuse their ability to replicate.  Apparently, the resistance is created thru replication (birthing) of new forms.  By disarming the replication ability in multiple forms the ability to create resistance is dampened.

The later addition of the short pulse usage of Flagyl is used to actually kill off existing bacteria.

If all goes well the ideal regimen plan I hope to follow is:

1st) doxycycline 200mg once daily (TAKE FOR 3 WEEKS ALONE)
2nd) azithromycin 250mg three days a week (ADD 3 WEEKS LATER)
3rd) Short periodic courses of metronidazolei(Flagyl) one course every 3 weeks,400mg, 3x/day, increasing from 1 to 5 days as tolerated. (ADD 2 MONTHS LATER). 

I would like to start 200mg doxycycline immediately.  I am writing to you now to request that you consider allowing me to take the antibiotics regimen, and follow the concurrent combination, instead of cycling.  I only have 1 chance to do it right the first time.  I do not want to create antibiotic resistance unnecessarily.

I am going to get the blood work done as planned later this month and then make an appointment to further discuss this treatment plan in person with you.

Dr. David Wheldoni in the United Kingdom is the developer of this specific protocol.  If you have any concerns or questions with the concurrent use of the antibiotic’s or anything else with the regimen I would be glad to facilitate arranging correspondence or teleconference with him.

Thank you again for helping me trial this therapy.

Sincerely,

{Xxxxxx Xxxxxxxxx}

Comments

Artile, I would change that

Artile, I would change that third paragraph and explain just what you stated. I have PPMSi There are no remissions or any any current treatments available. I would like to try this protocol as I feel I have nothing to lose and an opportunity to gain - can you help me with this program? Good Luck! On Wheldon protocol for MS since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Louise, I am so happy it

Louise, I am so happy it helped you find a doctor - that is great news. On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Hi Artile, This is Wiggy's

Hi Artile, This is Wiggy's letter from April 2006 that I recently used as was suggested by Sarah. I usee it twice the first provider looked right past it in a sense. The second was in concurrance with it. As I did I would support you in altering it in any fashion that you find applicable. Pmessage, Sarah as she is so knowledgeable about all MSi issues to help you decide how to tweek this for your specifcations. I would be glad to help you if necessary, yet I feel that a fellow MSer would be best and know the subtile issues that could be included to support you specifically.

I love the way that the information flows with such generosity through this site. We may have little rifts but basically we all really supportive and empower of each other in getting the care we need to get weller over time.

Best wishes for a productive use of this letter for whomever needs it to communicate their needs clearly. Sometimes from a very unclear space.

Louise

CFSi/ME. CPni posititve, Bb positive. Started CAPi 6/24/07 Doxyi & NACi 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tinii Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxini sxs x 1 week after pulses.

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

Wiggy, I wonder if you

Wiggy,
I wonder if you could advise me as to how I would alter this letter for primary progressive msi. PPMSi has no remissions. Nor have any meds been developed to treat it. It is also a diagnosis which immedately nixes participation in studies. So at least there is no compettion in the way of alternatives. Anyway, should I just eliminate the third paragraph or what?

PPMS-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuroi. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. Rockville,Md.

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Wiggy, thanks for your

Wiggy, thanks for your template for this letter, I have adapted it for my Non-MSi situation and am  quite pleased to share that I have found my new MD. I am sure that this letter saved me much discussion time and I offer it as a further adaptation of your fine work. I include it here below.

If any of you see any corrections that are needed please personal message me and I will make corrections:

 

Your name

Your address

Your city and Zip code

Your Phone number

Date of letter

__________________, MD

_Practice Name______

Street address

City, State, Zip code

Phone number

 

Dr. _______,

 

I deeply appreciate your willingness to consider supervising me on a long-term combination antibiotic regimen to treat my Fibromyalgiai and Chronic Fatigue Syndromei as an expression of Persistent Chlamydia Pneumoniae.

I understand that this protocol is non-conventional, and is not without risks, including immediate or long-term serious adverse events from antibiotic use.

As you well know, some bacterial and viral infectionsi share many of the same symptoms as Fibromyalgia and Chronic Fatigue Syndrome. I understand that I do (or do not whatever is specific for your situation) have laboratory evidence of current measurable infection of Persistent Chlamydia Pneumoniae, requiring antibiotics. I have read theories suggesting that some infections, especially long-term infections, may not be accurately detected by current conventional lab tests.

The specific protocol I am asking you to supervise was specifically created to eradicate a CPNi bacterial infection, but this protocol is similar to that used to eradicate other bacterial infections as well. Proof or identification of a specific infection is not my ultimate objective. I am interested in empirically discovering if I can experience any disease progression reversal by use of antibiotics.

I am now taking several probiotic supplementsi with the antibiotic therapy.

I would like to continue the antibiotic regimen.

I am proposing the use of doxycycline and azithromycin /or roxithromycin.

I have about read the importance of not cycling the doxycycline and azithromycin (or macrolide antibiotic roxythromycin) and the necessity of taken them in combination to avoid developing resistance.

 

(Here I inserted the history of the Abxi that I had been taking since I had already started the protocol with another MD who closed practice.)

Apparently the cyclical long-term stopping and starting use of the individual antibiotics protocolsi will promote resistance rendering each ineffective.

Also, the protocol works four times more effectively by using both antibiotics in combination because of their synergistic effect.

Each antibiotic targets different steps in the bacterial protein synthesis pathway. Their primary effect is not to directly kill bacteria but instead to diffuse their ability to replicate. Apparently, the resistance is created thru replication (birthing) of new forms. By disarming the replication ability in multiple forms the ability to create resistance is dampened.

The addition of the short pulse usage of Mentronidiazole (Flagyl) (or tiniazole) is used to actually kill off existing bacteria.

If all goes well with our appointment, the ideal regimen plan plan structure I hope to follow is:

1st) Doxycycline 200mg daily (may be taken as doxycycline 100 mg twice a day)

(TAKE FOR 3 WEEKS ALONE)

Here I have added what I have been doing thus far again. Omit this paragraph or insert you own information here.

I have taken 200 mg twice a day for 3 months and 100 mg twice a day

for three months. For a total of 6 months of treatment at this current time.

2nd) Azithromycin 250mg three days a week/ or Roxythromycin 150 mg BIDi (ADD 3 WEEKS LATER)

I currently have chosen to substituted Roxythromycin 150 mg BIDi daily for the past 6 weeks.

3rd) Short periodic courses of metronidazolei (Flagyl) one course every 3 weeks,

400mg – 500 mg, 3x/day, increasing from 1 to 5 days as tolerated. (ADD 2 MONTHS LATER).

OR May Substitute Tinidazole 500 mg 2 x per day one course every three weeks increasing 1 to 5 days as as tolerated.

I added the nidiazole (Tinidazole) antimicrobial on _________.

4th) N-Acetyl-Cystine 600 mg BID to start to address the Elemental Body form of CPn. This Supplement is used to address the disulphide bonds of the communicable form of CPn both as a preventative for future infection and as support for liver function. It can be added early in the treatment protocol or later as the replication of the organism has been impaired. The amounts of NACi can be worked up to a total of 2400 mg/day.

I am currently taking NAC 600 mg BID, this is available as an over the counter supplement in the USA.

I request that you consider supporting and supervising me in my healing through Wheldon combination antibiotics protocol regimen, and follow the concurrent combination of medications. I looking for an MD to supervise progress and provide oversight and treatment for any related concerns as we work cooperatively to improve my health.

I do not want to create antibiotic resistance unnecessarily.

David Wheldoni, MD microbiologist in the United Kingdom is the developer of this specific protocol. If you have any concerns or questions with the concurrent use of the antibiotic’s or anything else with the regimen I would be glad to facilitate arranging correspondence with him.

More particularly in the USA, I understand that research scientist, Charles Strattoni, MD, Vanderbilt University enjoys being available in the USA for telephone consultation when needed. I can provide you this information should you need consultation with him.

Thank you again for your consideration in helping me trial this therapy for my Persistent Chlamydia Pneumoniae infection. I current have been diagnosed with Fibromyalgia,as diagnosed by Dr ______________ who is unfortunately no longer available to treat me for this diagnosis.. My diagnosis of CFIDSi was made by this same doctor.

I am looking forward to our appointment and discussion as well as a healing relationship.

Sincerely,

 

 

CFSi/ME. CPn posititve, Bb positive. Started CAPi 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 Endotoxini sxs x 1 week after pulses.

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

 I agree with Rica. That

 I agree with Rica. That is an excellent and superbly worded letter. It's a model for everyone. Can we put it in the Handbook?

On CAPi's protocol for Cpni in CFSi/FMSi since December 2004.
Currently: 150mg INHi, Doxyi/Zithi, Tinii pulses 

"I really didn't say everything I said." Yogi Berra

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Great!  We hope it can

Great!  We hope it can help some people that want to get on the treatment. 

We feel it put our doctor at ease and it allowed us to explain the protocol in more detail without her having to do her own research. 

I was also able to get right on probotics and it was harder for her to argue at my last appointment with her that the antiboitics were going to kill all my good bacteria.

My husband gets most credit for the letter as I still am in the fog Winkas I am just getting started on the program.

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Excellent letter!  What a

Excellent letter!  What a great contribution to this site.  

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

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