Paula, With a couple of exceptions (Dr. Michael Powell in Sacramento, Ca being one), we don't generally post our doctors' info on the public board. Start checking your private mail for answers, as anyone with a suggestion will likely send it there. What are you treating for - MSi [1], CFSi [2], other???

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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

Welcome Paula, Hope you have some pmessages in your box below your username that can share some information with you.

Louise

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Louise  CFSi [2], CPN+/Bb+,Wheldon CAPi [3] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [4] & Endotoxinsi [5] PRN, Doxyi [6] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

I hope you find a doctor but if you cant let me know and I will help the best I can.  I self treat becuase im sick and tired of doctors. It seems like the only useful docs are the ones on this website but I know there are some docs out there hiding under the rocks that would treat so dont give up

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Fibro, CFSi [2],  Myco, CPNi [7], Wheldon protocol, Zithro 250mg M/W/F/S, Doxyi [6] 100mg 2x day, NACi [8] 1200mg 2x day,  Flagyli [9] pulses 400 mg 3x day

Hello, thanks for replies. Okay, I think I have a local doctor who will follow the protocol. I see her tomorrow and will take printouts of the antibioticsi [10], timing and supplementsi [11].

 I have a diagnosis originally of chronic fatigue syndromei [12] and mycoplasma infection. I have recovered to about 80% on longterm antibiotics including Zithromax and minocycline. I also later got a diagnosis of Lyme disease with borrelia for sure and probably babesia. I have been treated for these with Zithromax, Mepron and quionlone antibiotics. The quinolones caused severe damage to my tendons and central nervous system making me worse, although it is not clear whether I still have infection going on or just damage.

Currently I started high dose garlic, Allimed, 4 weeks ago. My son also has Lyme, and he has done great and holds his own just taking garlic - Garlicell. So I figured it couldn't hurt to try this.

 However, I must say, that in 13 years of following cfsi [2] and Lyme the people I know who have completely recovered seem to have followed Stratton's protocol. So I am here to learn and make a decision what to do for myself. I know I am looking at longterm treatment in any case.

Again, thanks for any ideas.

Paula Carnes

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Paula Carnes

Blessing for meeting with the MD tomorrow.  You know the protocol that you want, have the data and will no doubt be diplomatic enough to state your wants and needs well.

Will be waiting for your sharing afterwards. 

Again, welcome to our community, I see that you have been reading here for some time.  Glad that you decided to post.

Louise

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Louise  CFSi [2], CPN+/Bb+,Wheldon CAPi [3] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [4] & Endotoxinsi [5] PRN, Doxyi [6] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Hi Paula,

Glad to see you here! 

I was pleasantly surprised to find that my GP was willing to rx me the meds here, something he was never willing to do on the MPi [13].  If I was unable to get him to rx me the meds, or if I feel I need more help along the way, there are many folks I've been in contact with that simply think the world of Dr Powell in Sacramento.  

HERE [14]'s his site if you haven't seen it yet.  He's willing to treat long distance if you go to see him for one initial visit.  I think he sounds well worth the time and effort it would take to see him and he takes insurance but not medicare.   Take care. 

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NACi [8] 2.4g, Zithi [15] 250mg/MWF, minoi [16] 200mg, Tinii [17] 1g/day pulses, Iodoral 25mg, Supps, CFIDSi [18]/FMSi [19], Hashimoto's, Psoriasis, PA, IBSi [20], Secondary Addisons

Don't believe everything you think!  

Gowest,

 You sound like me. The minoi [16] or doxyi [6] and zithro have done alot but now im ready for the flagyli [9] (knock out punch). Also I take garlic. How much do you take?

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Fibro, CFSi [2],  Myco, CPNi [7], Wheldon protocol, Zithro 250mg M/W/F/S, Doxyi [6] 100mg 2x day, NACi [8] 1200mg 2x day,  Flagyli [9] pulses 400 mg 3x day

Gowest, how far is Chatanooga from Nashville? Because you could go to Vanderbilt.

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PPMSi [21]-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi [3] 3/2/07 - 200 doxyi [6]; azith MWF. 5 pulses.

Hi Nancy, Paula does not fit the patient profile covered by the Vanderbilt practitioners.  She has not been diagnosed with MSi [1] and is not complaining from neurolyme symptoms from what I read in her posts above.  Many folks would be happy if there would be an MD there that would treat other presentations of chronic bacterial infectionsi [22] but I have heard of none.

Best Regards,

Louise

 

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Louise  CFSi [2], CPN+/Bb+,Wheldon CAPi [3] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [4] & Endotoxinsi [5] PRN, Doxyi [6] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Paula, how did the MD visit go two days ago? Is your silence a good sign.   Waiting to hear about the outcome.  Many of us had to go through more than one provider to find on open to learning and working in cooperation with us as individuals.   I have been blessed in my situation.  I lost my original diagnosing practice to closure, then the next provider wanted to take me off abxi [10] and substitute an herbal protocol ( he did order a CD-57 which is another marker used for Dx of Lyme so it was not a total waste, just comfirmed that 4 months on Doxyi [6] was not enough to treat that), then as I continued to self treat (some coverage of meds from the initial practice)  and look elsewhere I found a gem of a provider.

Keep looking it is work but worth it and some folks self treat if all else fails so although not the best approach it works for some.

Hoping to here the good and the difficult.

Louise

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Louise  CFSi [2], CPN+/Bb+,Wheldon CAPi [3] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [4] & Endotoxinsi [5] PRN, Doxyi [6] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Here is a compilation of drs that were submitted by CFSi [2]/FMSi [19] sufferers.  http://www.fms-help.com/ [23]

 I found my dr on thyroid-info.com  He is very open minded and he is helping me with my CFS and tested me for Cpni [7] and came out positive.  The doc list on thyroid info has reviews of the drs.  This might help.

 

 

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CFSi [2] and IBSi [20]/Candidiasis since 2000, 100mg once daily doxyi [6] since 8/21/08, 250mg azithro MWF since 10/3/08, recommended supplementsi [11], B12 shots weekly