Maybe I'll finally be able to get out of the house, again...

I took 5 mgs of Cytomel (T3), 12.5mgs of the Iodoral (iodine), and 100 mgs. of Selenium, this AM. And, the Evening Primrose oil. If I don't take it, my menstrual cycle starts back up and/or I bleed heavily. This happened to me 3 times, in less than 30 days. Was suffering from a bad case of secondary porphyriai [1], after the IV ABXi [2]. In hindsight, I wish that I had never, ever deviated from the Wheldon regime. Tried Benadryl, Allegra, Famatodine, Benfotiamine, Bentonite, Actos, Benicar, Welchol, Neurontin, and charcoal. But nothing, except glucose, seemed to help. Even the predinsone (steroid) bursts made me worse. The 3mgs of LDNi [3], that I was taking each night, was making symptoms worse, too. Have knocked it down to 1.5 mg and may have discontinue it, altogether. My LLMD/ CAPi [4]-prescribing doc thinks that we are dealing with hyothyroidism, reverse T3, and iodine insuffciency caused, and contributed to, by infection So, have begun this, in addition to the Wheldon regime. Have been stuck in the house, now, for over 2 months and hope that I have finally found some answers.--Minai

I hope so too Minai,

Submitted by Michele on Sat, 2008-07-12 10:23.

I hope so too Minai, hopefully your example will be a good lesson to others. IV ABXi [2] is a drastic step to take if you are suffering from Cpni [8]. However in the long run the Cpn may have been reduced somewhat if the right antibiotics were used.

___________________________________________________________

Michèle (UK) GFAi [9]: Wheldon CAPi [4] 1st May 2006. Daily Doxyi [10], Azi MWF, metroi [11] pulse. Zoo keeper for Ella, RRMSi [5], At worse EDSSi [12] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Minai, I have been

Submitted by speedbird on Sat, 2008-07-12 10:31.

Minai, I have been following your story and hope that the thyroid issue that your doctor has identified proves to be the key to some recovery for you. Being housebound is no joke and I do feel for you. Perhaps now that you have a clear plan for future treatment your spirits will begin to lift also?

I also suspect that LDNi [3] may be contributing to your spasticity, that has been reported by a number of people who tried it and they have stopped using it. I am considering dropping it too, but mainly to see if it really does contribute anything to the Wheldon protocol.

Good thoughts on the way to you.

Carol

___________________________________________________________
Progressive MSi [13] dx2006. LDNi [3] & CAPi [4]: Wheldon version. All supps. Doxyi [10] 200mg. Zithi [14] 250mg. Metroi [11] 400mg.Pulses #10/16...I can because I think I can.

I'm keeping all my fingers

Submitted by Sarah on Sat, 2008-07-12 11:23.

I'm keeping all my fingers and toes crossed, Minai. I have tried and I can still walk whilst doing so. Hadn't thought about painting that way though.

I think you may well find that LDNi [3] isn't helping matters to do with spasticity. DW has always cautioned me against using it for this reason as well as the fact that if the antibiotics are working, why bother to add anything else. I can't argue with that...............Sarah

An Itinerary in Light and Shadow

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [13] in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [12] was 7, now 2, less on a good day.

Minai,Yes, you will!I hope

Submitted by jeanneroz on Sat, 2008-07-12 14:10.

Minai,

Yes, you will!

I hope this is one piece in your puzzle to your road to feeling more energy! CPNi [8] does affect the HPA axis. I addressed my adrenals with Cortef and have had significant improvement.

Be well and blessed,

Jeanneroz

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JeanneRoz~CPNi [8] diagnosed & started protocol 4/2007, also HHV6, EBVi [15]. CFIDSi [16]/FM diagnosed: 6/07; 100mg/doxyi [10]/BID ~ 250 mg AZITH M/W/F ~~~1st Tinii [17] pulse 4/17/08- 1 250 mg. tab for 2 days~~. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

Minai, I hope this helps, [18]

Submitted by wiggy on Sat, 2008-07-12 13:47.

Minai, I hope this helps, keep us posted!

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On Wheldon protocol for MSi [13] since April, 2006. doxyi [10] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [11] Pulses start end Sept., LDNi [3] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

Hi Minai,I have recently

Submitted by Tina on Sat, 2008-07-12 13:47.

Hi Minai,

I have recently read the "The MSi [13] Solution" written by Kathryn Simpson. She was diagnosed with MS and feels that she has succesfully treated the disease with hormone replacement. She places a lot of importance on thyroid imbalance, particularly hypothyroidism and reverse T3 as playing a role in the cause of MS. It is fascinating to think that cpni [8] infection of the thyroid may play a part in the the cause of the dysfunction. Its is additionally coindicental for me to read your reference to hypothroid and reverse T3 as having a connection to cpn, after reading this book.

Tina

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Tina-MSi [13] 37 years;EDSSi [12] 4.5 1/1/08 Wheldon CAPi [4]; Azith 250mg 3 x a week; Doxyi [10] 200mg daily, NACi [6] 2000 mg daily, started Flagyli [11] pulse 4/14/08.

Minai - So glad to learn

Submitted by Daisy on Sat, 2008-07-12 14:48.

Minai - So glad to learn that things are looking up for you !

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Daisy - Husband on CAPi [4] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

My new doctor is also

Submitted by wiggy on Sat, 2008-07-12 15:52.

My new doctor is also looking at thyroid problems for me. I am taking my temperature in am and he wanted any thyroid blood work I have had done. I can't come up with blood work but my am temp. is very low.

Thank you for all of the

Submitted by Minai on Sat, 2008-07-12 20:38.

Thank you for all of the replies and well wishes!

Michele: It is hard to say whether or not the IV ABXi [2] really have helped with Cpni [8] infection. But, they really were too much to handle.

Carol: It is very difficult/depressing to be housebound, especially for this legth of time. Yes, the LDNi [3] did cause spasticity that was supposed to go away, but didn't. Maybe I should have given it up, long before this. It's just that it does seem to give me much more energy/strength. And, I do like the effect that it has on dreams...I just wish that there were greater, more detailed research that has been done/made available.

Sarah: Would be difficult, if not impossible, to paint without uncrossing those fingers (and probably, toes) Yes. I fully believe that the Wheldon regime is the cure. I wish that I never did add the LDN. And wonder if it may contributed to what I am adding in, now.

Jeanne: I hope that the Cytomel(T3) will not be permanent. The way that I reacted to prednisone, the Cortef would probably just kill me. Am happy about the Iodoral/Iodine, though. That was my doctor's initial concern...that the HPA axis was being adversely effected.

Wiggy: Yes, I'll try to keep everyone posted. Body temp was a big indicator. It was 97+ throughout the day, even after exertion. Maybe new thyroid bloodwork will provide more answers for you.

Tina: Thank you for this book info. I guess that the author recognizes hormonal effects, too. It does seem apparent that it's caused by/contributed to infection. Even if all that we can do is guess at the details, sometimes. Am/can I correcting/preventing damage with theses other measures, besides CAPi [4]? I just do not know.

Daisy: Not big on faith, but always full of hope...

Thanks, All!

--Minai

RRMSi [5], diagnosed 2/04. NACi [6] 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDN 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini [7] 3/08. IV Clindamycin 5/08. USA

Hi Minai. Yes I have

Submitted by jak7ham9 on Sun, 2008-07-13 05:28.

Hi Minai. Yes I have taken 3mg of ldni [3] since last june. I agree it immediately gave more energy and mental clarity . I too love the dreams. I was never quite fatigued again (that horrible constant ms exhaustion departed after ldn) I also am intrigued that it improved manypersons mri. On the other hand it certainly did not improve my spasticity either. I find still my spasticity the biggest complaint. Now yesterday I performed a wedding ceremony on the beach. HOt. The bride was over an hour late it was close to 90F. I hobbled to the beach over aprox 1/2 mile of boardwalk starting stronger and weakening with heat and length the sand at the end as a killer./ There was a handrail to hold on the boardwalk. Did the ceremony (I got ordained online years ago to help with the excess of wedding at the hotel) I will tell you at the end walking back my brother jst picked me up and carried me half way as I was like a slug. (At the wedding there was a lady in a wheelchair I don't know what she had. but here legs arms were atrophied and curling in. I think it might have been longterm ms. i thought thank god at least I am not there. Thank god i found a way to stop progression. Now damn if I can just get better!!!)Luckilly I was revived wwith the car AC. But jeez was I beat last night . Gosh darn walking walls worthless. I am taking it easy today I swear staying in pool and ac I think. Luckily some friends came over last night and cooked an amazing petso pasta ( the garden is full of basil) I did not help for anything and they even cleaned up. I felt really lazy but they were happy to help and I provided space, pool, kitchen, wine, and lots of home made zucchini bread I made the day before when mobile. Oh also my temp runs naturally low and my doctor's suggested iodine never got the full scoop on that though. It really sucks when you wan t to function and go go go and can't. Back on rifamp and doxyi [10] Barbara

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NACi [6] and glutathione push for years all supplementsi [19] in protocol)IV vitaminsi [20] b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli [11] 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008

Hi Barbara, Am still trying

Submitted by Minai on Sun, 2008-07-13 13:37.

Hi Barbara, Am still trying to figure out the issues with LDNi [3]. Had started it after I started CAPi [4]. And even had MRIs showing no progression/enhancement before starting it. Maybe the spasticity is caused by low thyroid. Maybe 3.0 mgs is just too much, because of it. The do warn those taking it with Hashimotos and thyroid conditions on their website. I didn't take any last night, and am so weak. But, did up my Iodoral dose and think that it may be helping. Bromide, chlorine, and flouride are all warned about as toxins in Dr. Brownstein's Iodine book. So, because you have to hang out in the pool, it would probably scare you as much as it scares me. Wall-walking is pretty much useless for me, too. It's just amazing that you were able to get to the beach and perform the wedding. Just glad that your brother was there to help! And, that you friends fed you so well. Great that you are back on the Doxyi [10] and Rifamp. --Minai

Minai, As you know, we've

Submitted by MacKintosh on Sun, 2008-07-13 14:21.

Minai, As you know, we've speculated for years that cpni [8]-infected thyroid glands are responsible for some of our problems. Just a caution for everyone, though, to monitor very carefully once on thyroid treatment, as it will probably have to be adjusted more frequently than the dr expects, because as cpn is cleared from the body, and therefore the thyroid, progressively less medication should be required.

I'm so glad you've found something that seems to a big piece of your puzzle!

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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

Thanks, MacK! It helped to

Submitted by Minai on Mon, 2008-07-14 10:37.

Thanks, MacK! It helped to remind me. I haven't taken the Cytomel for two days, now. Am just going to see how I do on the Iodoral/Iodine, alone. I hope that the infection clears, eventually. --Minai

RRMSi [5], diagnosed 2/04. NACi [6] 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDNi [3] 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini [7] 3/08. IV Clindamycin 5/08. USA

Minai,Cortef is not as

Submitted by jeanneroz on Mon, 2008-07-14 10:49.

Minai,

Cortef is not as severe as Prednisone (at least my dr. made that statement) because it is taken in subclinical (?)dosages. I was very concerned about taking it as well. Most people do not take more than 20-30 mg/day, (in 5 mg. doses spread throughout the day).

My treatment with Cortef is, also, (hopefully) temporary. I need to give my adrenals a rest and then slowly try to wean off the Cortef. I tried the Cytomel, but stopped because if you do not address the adrenals before adding Cytomel it can cause an additional burden of stress on them.

There are other options to address the adrenals naturally such as licorice, or Isocort (my were too far gone.... these didn't work for me).

As you know HPA stands for Hypothalamus, Pituitary, Adrenal (of which the thyroid is part of the loop ;). My not having a thyroid, in addition to having CPNi [8] pushed my adrenals to the limit causing severe adrenal insufficiency. T

Adding Cortef has been a MAJOR component to my getting my energy back!

I also have been monitoring my T3/T4 levels (my reverse T3 was fine). My TSH has always been irrelevant (no thyroid) and it is always supressed.

I think you are wise to not take the Cytomel until you see how the Iodoral helps. I will be following your progress.

Be well,

Jeanneroz

___________________________________________________________

According to Dr Teitelbaum,

Submitted by Reenie on Mon, 2008-07-14 12:09.

According to Dr Teitelbaum, CFIDSi [16] researcher and clinician, Cortef is 1:4 to Prednisone. It's alot safer and less severe on adrenals and is a good way to temporarily support them. I was on Cortef for many years due to Secondary Addison's (I was hospitalized and had severe adrenal suppression due to Prednisone) and it also gave me a lift. I had no problem weaning off the Cortef and my adrenals test well within the normal limits now although there are times when I feel fatigued.

I think there are so many factors one can look at when we are chronically ill that affects energy levels so it's important, IMOi [21], as Dr T says to treat them simultaneously. For example, I also take thyroid meds and have for nearly 30 yrs. I have recently lowered Synthroid dosing due to my lab tests that improved since I've been on Iodoral.

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NACi [6] 2.4g, Zithi [14] 250mg/MWF, minoi [22] 200mg, Tinii [17] 1g/day pulses, Iodoral 25mg, Supps, CFIDSi [16]/FMSi [23], Hashimoto's, Psoriasis, PA, IBSi [24], Secondary Addisons

Don't believe everything you think!

I am so glad you are

Submitted by ruthless1 on Wed, 2008-10-08 12:27.

I am so glad you are improving finally after your evastating experiment!

One of my docs, who also has ME, was the first to sound the alarm for secondary hypothyroidism. He handed me a chart & for 2 weeks I took my temp, as I was getting out of bed in the morning, noon (sometimes I missed this one due to work) & right before going to bed at night. It was astonishing my temp was up to 3 degrees below "normal". He just said "no wonder" & put me on Armour Thyroid.

When I went to the FFC in Washington, secondary hypo thyroid was confirmed, but she wanted me on a compounded formula t3/T4 which I am stil on to date. More recently though, my natural Doc added Cytomel 5mcg 3 X a day. My latest blood work still has my T4/T3 about the middle of the range. This could be another reason for the spiking weight issue. The FFC doc said people with ME & FMSi [23] should have their T levels in the 75% range of Normal. I am still battling this!

My prayers are with you!

peace

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CFIDSi [16]/ME 32 yrs, FMSi [23], ~~IBSi [24]~~, EBVi [15], CMV, Cpni [8], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08