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Anne Scott
Member in Phase 3
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Posted: Mon Sep 10th, 2007 22:11 |
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Greetings, everybody on Benicar and Mino.
Benicar: 10 days (4 40mg. pills per day)
Mino: 2 dosages so far. (25 mg.)
Glasses: lightest shade of Noir, inside and outside.
Clothing: mostly dark clothing + zinc oxide.
Symptoms: not much of anything right now. A little bit of a stiff neck. Moderate eye sensitivity. Pronounced gum pain above the tooth and normal gum line, between sinuses and teeth (?). Strange, but I've read the sites that explain this issue. Would like the pain to diminish (and will get the right gel for this), but also need some reassurance that I can let the gum symptoms play themselves out. Don't want to go to a dentist because of what they might recommend (i.e., some procedure or something that may be unnecessary... As I said, this seems to be above the teeth and roots and below the sinuses...)
Any feedback would be appreciated.
Anne
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Aussie Barb
Member in Phase 3
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Posted: Tue Sep 11th, 2007 01:28 |
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Anne
Welcome to mino forum and thank you for posting your progress report and your details. when you write your mino dosing do also please let us know the schedule. eg QOD (every other day or Q48H). and also if you are using extra Benicar to assist. thank you.
The symptoms experienced are due to Immunopathology.
The first recommendation to minimise any symptoms.
If your Dr agrees: to minimise symptoms at any time, or if going out - as well as protecting from light, we recommend taking an extra half tablet (20mg) Benicar any time during the cycle, or adjust to 40mg Q4H. see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief..
My immune response / symptoms are too strong. What should I do? ..
Any time that your symptoms are going past tolerable: please check the precautions and the options one at a time to assess: do not hesitate to use any of the adjustments suitable to you. Tools to check:
We adjust the MP meds to assess: We treat every symptom as immune response first to get the most benefit from your MP meds, and then with additional help if required. >>
If you need further temporary relief of your symptoms, after making adjustments to your MP meds, you may wish to contact your Dentist, doctor or pharmacist for advice about palliative medications. Any medications that are not on the list of MEDICATIONS TO AVOID WHILE ON THE MARSHALL PROTOCOL are okay to take to relieve intolerable symptoms. << if having any problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.
Make sure of adequate pain control, rest, relaxation, and hydration, nourishment etc.. Rest is a very important part of managing and healing..
all best, Barb ..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Anne Scott
Member in Phase 3
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Posted: Tue Sep 11th, 2007 03:32 |
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Benicar: 10 days (40 mg. 4 times a day)
Mino: 2 doses (25 mg. every other day)
Glasses: all as in previous notes.
Diet: all as in previous notes.
Symptoms: all as in previous notes.
Thanks Barb, for your prompt responses. I appreciate it.
I have bad news on the Benicar front, and of course will read the links that tell us what we do if we can't procure the right dosages from our doctor or the insurance company. However, I'll let you know the problem here also:
I was all set to receive a 3 month supply (and refillable for many months) but the insurance balked and now all I can receive is 90 pills for 90 days, max. The insurance company gave me the wrong information initially. This means that when this shipment arrives, I'll only get about 22 days out of the prescription, not 3 months, and then will have to wait out the rest of what remains of the 90 days for another prescription -- a real yo-yo effect, and bad for my continued treatment.
Of course I'll write an appeal letter, have it signed by my doctor, and see whether I can affect a change that way. But I'd appreciate knowing of any solutions to this problem of not having the correct dosage on hand.
Now that my Benicar may be running out for a long while, how do I handle the Mino addition? Do I stop the Mino when the Benicar runs out? I can't see how it would do much good if it's not also paired with the Mino. And do I continue wearing black/glasses and continue on the correct anti-vitamin D diet etc? That seems sensible.
Bummer.
Anne
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Tue Sep 11th, 2007 03:37 |
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Thank you Anne
another alternative is to ask Dr for a separate script and self pay.
BENICAR: Where to purchase Benicar for self-pay members
How much is an adequate emergency supply (of Benicar and minocycline) to keep on hand? When you ask Dr for a script, always make sure you have enough Benicar for extras.
see the details in this FAQ
How to take a break from the Marshall Protocol? Some are able to stop the antibiotics and be stable. The Benicar actually activates the immune system so that it can sense and attack the intra-phagocytic bacteria. Your immune system will often continue to do this in the absence of antibiotics, and even in the absence of Benicar.
Thus, regular doses of antibiotics can be modulatory and may actually reduce your immune response.
Thanks, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Anne Scott
Member in Phase 3
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Posted: Tue Sep 11th, 2007 08:00 |
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Hi Barb,
thanks for your response.
I've read all that you've sent me and am a little clearer about the self-pay customer, but I have a few more questions (please and thank you):
If I'm a self-pay customer and I go your site that lists where meds can be purchased by country, do I then find a different country from the USA and have my new script filled by this other country? I see that Germany is a country listed in an email thread of 2004, but is this no longer a country that I can order the Rx from now? I see other countries highlighted with live links, such as Canada (but no longer Germany), but Canada pharmacies only take Canadian Rx's.
Or, if I'm a self-pay customer, do I just obtain a new script from my doctor, walk into any USA pharmacy with reasonable drug prices, and hand them the script? Can this script be for more than the ususal dictated amount of one 40mg. tablet once per day (as for hypertension?) Can this script for the self-pay customer be written in the way that I need it, i.e., 120 pills per months with adequate refills?
Thanks in advance for helping me with these questions...
Anne
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Joyful
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Posted: Wed Sep 12th, 2007 08:30 |
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Hi Anne,
I am a self pay customer and I have found that about the best price in the U.S. (when you buy a 3-4mo supply) recently was around $1.95 per pill! Others are buying online from Canada. There is a long discussion in another thread you might find interesting reading.
I was buying from Costco for $2.40/pill before Evelyn tipped me off to Kilgore's. It is worth it to shop around!
~Joyful!
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Deb Grabetz
Member in Phase 3
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Posted: Wed Sep 12th, 2007 15:44 |
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Just thought I'd throw my two cents worth in  ...my Benicar is not covered due to the Manufacturers recommendation on dosing...it doesn't matter that my doc has prescribed it..or that it has been clinically proven safe to take at this dosage...it is just Medco's policy. The first two months were covered but when I began ordering by mail (required by Medco after first two Rx filled) they turned me down. I did file a reversal which was turned down...sooooooo, I purchase my Benicar from WalMart...the cost is $1.83 per pill....this is for a one month supply/120 tabs.
Last edited on Wed Sep 12th, 2007 15:46 by Deb Grabetz
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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Anne Scott
Member in Phase 3
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Posted: Wed Sep 12th, 2007 18:58 |
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Dear Joyful,
thanks for the info. I will probably use a company abroad if my appeal to Blue Cross/Shield is turned down. Their prices overseas seem to be the cheapest so far. Let's hope my insurance company sees the light...
Anne
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Anne Scott
Member in Phase 3
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Posted: Wed Sep 12th, 2007 18:59 |
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Hi Deb,
I'll hope my insurance company (BCBS) will reverse their decision and let me have the amount that I need. If not, I may go to a company overseas and get them that way. Thanks for the info.
Anne
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Joyful
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Posted: Wed Sep 12th, 2007 19:51 |
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Anne,
I am hopeful with you that your insurance will come around and cover the full dosing of Benicar. And I can understand going with the lower priced options if that falls through. If you look at some of the older posts you can see that the price in the USA has really jumped up in just a couple of years.
As I understand it, Canada mandates the prices to the pharmacuetical companies and so it has stayed low there. Maybe they just charge us here more in the US to make up for it? Who knows?
One thing I do know, even though I have to pay for every pill out of my own pocket, I am willing to do what it takes to get my health/life back!
May your every appeal be granted!
~Joyful~
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Deb Grabetz
Member in Phase 3
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Posted: Wed Sep 12th, 2007 21:48 |
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Joyful- I so agree...about paying for the Benicar that is...never would I have imagined taking so lightly spending that kind of money for a med....but it is surely a no-brainer now! I so....
"love my Benicar" GL Anne! Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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Anne Scott
Member in Phase 3
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Posted: Sat Sep 15th, 2007 06:53 |
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Greetings:
Benicar: 3 weeks (40 mg. 4 times a day)
Mino: 25 mg. every other day for 1 week.
Symptoms, plus and minus: lots of eye pain, brain fog, meningitis symtoms, and muscle weakness (sometimes profound) that comes and goes. Always feel better on Benicar (and ran out of Benicar for a little while, and symptoms got worse). Feel good now (while typing this note), except for eye pain. I notice less inflammation in my back and joints than I've ever noticed before. Gum problems that were painful a week ago have entirely gone away. Mowed my lawn with my push mower today, and although I was weaker than I'd like to admit, I did it because being active and outdoors (although covered up) felt great.
Question 1: I found a diaper rash ointment called "Beaudreau's Butt Cream" that has 16 percent zinc oxide, higher than most suntan creams. May I use this on my exposed body parts? Or does it have to be some special kind of zinc oxide cream that I don't know about?
Question 2: I'm well accustomed to "herx" responses of all kinds, having tried "this" protocol or "that" regimen (some allopathic, some not) and have gotten used to enduring them for days/weeks at a time before they abate (or before I have had to quit whatever regimen to get some relief.) So, I'm not totally frightened by the severity of these immunopathology symptoms that I'm having now. And I know that each person is different and because of this, the symptoms will vary for each person. And yet my question still is: can someone direct me to the email/discussion "thread" that can give me an approximate sense of how long these meningitis symptoms will last, or when I can expect them to diminish over the weeks? Or a more simple question: will, in fact, these brain fog/meningitis symptoms diminish over time? Because I've had such rotten luck with other Lyme protocols before the MP, I admit to being a little frightened about thinking that I'll have to endure these herx symptoms with yet one more protocol, only to have them come back just as strongly when I'm least expecting it, or to have them never really go away completely -- as if I'm going to have to fight the same "quantity" of infection over and over again, ad infinitum....
Thanks
Anne
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VEZ R.N.
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Posted: Sat Sep 15th, 2007 09:41 |
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Thank you for posting Anne,
There are several types of sun screens available containing zinc oxide and they can be found at most drug stores, Walmarts etc. Here is a link that should help: Sunscreen overview
The cream you referred to for diaper rash is probably very thick and may be difficult to use as well as not too good for the face. Trader Joe's also has an inexpensive sunblock with zinc oxide that works well.
You mentioned eye pain, have you had a thorough eye exam with an ophthalmologist? It might be a good idea to do so just to be sure there is not something going on that may need attention. Also see this link: immunopathology cause increased eye inflammation? If you are concerned please check with your Opthalmologist. It is important to visit a health-professional when you need advice about your eyes. re dry eyes.. << Adequate eye protection will be particularly important for anyone with eye inflammation.
Immunopathology symptoms are a part of the healing process caused by the by-products of destruction of the CWD organisms. As these organisms are eliminated by your immune system the by products of bacterial cell death include substances such as toxins and nitric oxide etc. The body works very hard to eliminate this "debris" but there are effects from the changes these substances cause in the body which in essence cause the symptoms you are having.
It takes a long time for Th1 disease to cause symptoms that drive folks to get medical attention. It takes even longer to get the right diagnosis and use the trial and error methods of medicine to attempt to get resolution. Couple that with the length of time most of us have tried self treating with supplements and alternative medicine therapies and a lot of CWD organisms have taken up residence throughout the body. So with that said to answer your question there is no time frame that would be accurate to pinpoint when the immunopathology will stop except when the bacterial load has diminished sufficiently enough in number to stop causing symptoms during die off.
You can control the degree of your symptoms by managing your environment, energy output, diet etc. Rest Rest is a very important part of managing and healing.. By being pushed to the limit of the tolerable immune response our body is already working to capacity without additional expenditure of energy. see Tools to check:
For those who have been ill for a long time or who have a high level of symptoms it can be difficult to define the line between tolerable / intolerable...
The Ideal to be striving for - Immunopathology and its management will vary depending on many individual factors. Management of immunopathology is learned through personal experience. Each member takes responsibility for learning about, assessing and reporting their symptoms regularly. Details required
Another good link to read is :What degree of healing is possible using the Marshall Protocol?
A description of what to expect on the road to recovery, treatment endpoints, and the gap between the public and medicine's perception of successful treatment.
In essence the MP is not the easiest road for sure but than you already know having a Th1 inflammatory disease is difficult as well and this leads to the conclusion that the alternative to a cure is life long illness.
Anne, I hope you will take the time to read the links I have posted above. They will help you understand the management of immunopathology to a tolerable level. I hope this answers your questions. We are happy to assist you. Take good care of you.
Warm Regards, VEZ
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Carole
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Posted: Sat Sep 15th, 2007 18:36 |
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Hello, Anne!
I would like to add to Vez's wise advice that "being covered up" for outdoor activities is not enough for most of us, especially in the early phases of the MP. My experience was one during the first few months of the MP of throat tightening, nausea, stomach cramps, headache, heart palpitations, etc. In essence, the immediate return of my previous symptoms became the enlightening marker that sunlight and chronic inflammation do not mix.
As time has passed, various delayed responses, rather than immediate ones, have been obvious clues that I still have needed to maintain diligence in avoiding light. The good news is that the need to do so becomes less as one progresses.
It is completely understandable to desire an emotional boost, but it is necessary to follow the guidelines carefully for efficacy and safety. Your concerns are valid, but please know that the MP takes time and patience.
Best wishes and take care as you begin this unique journey to wellness! . . . Carole 
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| AC
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Anne Scott
Member in Phase 3
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Posted: Sat Sep 15th, 2007 18:54 |
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Dear Vez,
thanks for your thoughtful reply. I've read through the sites you mention (and read some of them for the first time last night.)
I've associated the eye pain directly with (1) the start of the benicar treatment, which makes sense, and (2) the eye strain that I experience every day trying to use my eyes for my profession (lots of detailed work, grading papers, reading books, etc) while wearing these noir glasses, which aren't great for that kind of work. I may end up paying a hefty price for some optically correct, distortion-free glass lenses with all the correct specifications added to the lenses, but it would be worth it in the end.
I've kept a general log of how I feel on the MP (benicar + mino) but I'll keep a more detailed log. More details: Right now, I'm noticing that I start having IP (chills, headache, specific pain around neck, malaise, tiredness) 12-18 hours after taking a dose of mino (25 mg for now) and start feeling better about 6-8 hour before the next dose. So, I'm definitely purging the toxins before starting the next dose. However, I've worked under the "push push push" model for so long, deliberately trying to have horrible herxes in order to kill as much as possible in the shortest amount of time, that I'm not sure I'm the best person to tell myself when the herxes are "tolerable" enough to go on to the next phase. (To me, anything that hasn't killed me yet is "tolerable.") But I've read the guildeines and will progress as slowly as I can. I'm committed to the whole program, beginning to end.
Zinc Oxide creams. The reason I switched to the diaper rash formula is that any zinc oxide preparation that I have to put on my face which also has added stuff to turn it into a "sunscreen" causes more eye problems, no matter how "chemical free" the product is. I know the "Butt Cream" is greasy, but at least it's not hurting my eyes. Thanks, though, for the info. I'll check out Trader Joe's (coming to Flagstaff soon!!) when they finish building the store.
I'll be posting regularly. Thanks again.
Anne
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Lyme babesia HHV-6 Ph1Aug07 progesterone walnut oil NoIRs cover up lite exp r/t work ModPh2Dec07 Ph2Jan08 Ph3Apr08; D=15 (4/09)
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Anne Scott
Member in Phase 3
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Posted: Sat Sep 15th, 2007 19:09 |
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Dear Carole,
thanks for your advice. I'll try to mow my lawn from now on at dusk. As far as covering up goes, I cover up as much as possible, but (1) I live in AZ where it can be sometimes very very hot, even in the mountains, (2) I cannot avoid driving a good 30 minutes a day doing kid errands (I have a 12 year old and he's mostly with me all week), and being a single parent, most yard/outside duties devolve to me. But I'm trying to do most of them when it is getting dark but can't do all of them that way (nor have the money to pay for a lawn service). But I appreciate your concern and will do my best to stay out of the sun for a long long time.
Also --and I may end up eating my words later-- I do believe that I entered the MP somewhat healthier than some persons with Lyme disease. I have been healthy enough to hold down a very fulfilling job at a university and healthy enough to raise my wonderful son, and healthy enough to begin a relationship with a lovely man. (And despite what folks say about Rife Technology and this kind of healing, I have had some measure of success in wiping out many of these spirochetes, which have imploded under specific mortal resonant frequencies and have caused their own significant IP (headache, malaise, chills, etc) over time.) But this Rife protocol clearly didn't allow me to get completely better, so now it's time for the MP to do a more thorough job (and yes, I'm avoiding the Rife machine with the MP). Thanks for listening.
Anne
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Lyme babesia HHV-6 Ph1Aug07 progesterone walnut oil NoIRs cover up lite exp r/t work ModPh2Dec07 Ph2Jan08 Ph3Apr08; D=15 (4/09)
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davbrkr
Member in Phase 3
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Posted: Sat Sep 15th, 2007 22:09 |
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In answer to your question about where to buy Benicar, I buy my Canadian Benicar from http://www.canadadrugsonline.com/
Because my insurance would not pay for ALL of the Benicar needed for the MP (they will pay for 1/4 of what I need), I had my doctor write one prescription for 30/40mg capsules/month which I get filled locally (that's what my insurance will pay for.), and another for 120/40 mg capsules/month which I get from Canada. My Canadian pharmacy will send a 3-month's supply at one time.
Prior to starting the MP, I tired four other Lyme protocols over a period of 14 1/2 months including one using two prescription antibiotics. I did see significant improvements in health as a result of these therapies so I did start a ground zero with the MP. However, after I while and after more than a year of reading everything I could find on the subject of Lyme disease, I came to the realization that I could not find a single person who ever got completely well on any of the more than 30 protocols I investigated including the ones I tried. Many people got better, often significantly, but all remained in a compromised state of health or relapsed devastatingly back to the full-blown disease after some time.
I have the luxury of having TWO physicians, one a close personal friend, helping me with the MP. The Arizona doctor has Lyme disease, has used what are purported to be the best intravenous (IV) antibiotics, IV hydrogen peroxide, IV vitamin C, and IV colloidal silver, Human Growth Hormone therapy, etc., etc., etc., and he is still suffering after more than 4 years. He can work, but lives with brain fog, recall difficulties, very painful RSD burning on feet and ankles, and chronic back and shoulder pain. He's a very bright, compassionate, competent, knowledgable doctor (treating 250+ Lyme patients currently), but does not seem to make the connection between HIS pain, and the disease he is STILL struggling with. He is willing to work with me on the MP, is now talking about trying it on some of his more unresponsive patients, but isn't yet ready to do it himself. Nevertheless, I am lucky to have him as my doctor.
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Lyme, polymyalgia, RA, bedridden w/back pain 10yrs, MP7/07, Ph2 1/08, 25D20 12/07, 25D12.1 8/08, alprazoloam, Soma, Flomax, NoIRs, limited outings covered, low lux home,
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Anne Scott
Member in Phase 3
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Posted: Sat Sep 15th, 2007 23:17 |
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Hi David,
thanks for the information about the Canadian company. I have the same issue as you: my insurance will pay for 1/4 of what I need, so I'm having the insurance company pay for that, and then, if they do not accept my appeal, I'll go to the Canadian company for the rest.
I have a doctor in Tucson who is willing to work with me, though I'm her first patient on the MP. But she's very open-minded and has allowed me to be a guinea pig for all sorts of treatments, including IV preparations of Vit. C, etc.
Glad you have a helpful doctor.
Anne
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Joyful
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Posted: Sat Sep 15th, 2007 23:52 |
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Anne,
It sounds like you are laying the groundwork for success, and I too think that hearing from others about their experiences will help me to prepare mentally for the process. You will gain more detailed insight once you have access to the phase 2/3 progress reports and yet you will not know any more of what to expect for yourself because there really aren't any clues to how much time it will take for our bodies to identify, kill and remove these hidden pathogens.
I will say this from my reading of some the progress reports, it seems like the people who have struggled the most, and have suffered setbacks were the people who kept pressing on to meet their set expectations, their predetermined "schedules," even when their bodies were giving them lots of signals that they needed to slow down and solidify their gains before moving on.
Some of those folks are now much wiser to the need to be gentle to their bodies and to take more time than they really wanted to at the start. Some people, if their IP allows, only take the mino MWF ... allowing Sunday to be a time to enjoy some "time off" from the IP and to be rested up for another week of "work" on the MP. It seems that the people who are least "driven" to get through all the levels quickly are the ones who are doing the best.
I too, used some other treatments (mostly herbal, mostly very gentle) to address the symptoms of Lyme Disease and co-infections. I was able to get to a place of restored function using these, plus supplements, but the money was just flying out of our bank account and I knew that there was no claim that I was truly eliminating these pathogens. I can't imagine going through so much and working so hard with the threat of relapse hanging over my head the rest of my life.
I have had cognitive symptoms return (mental errors, coordination problems, etc.) even on the lowest dose of mino, but once the IP is over, then my mind seems to be clearer than ever. Your expectation might be adjusted to think of "waves" of greater and lessor symptoms over a period of time, with the amount of the symptoms slowly reducing to inperceptable eventually. Once these patterns become apparent, perhaps you can time it so that you work on the "brain required" tasks during those breaks in the IP that you have discerned by experience.
Well, hopefully those thoughts will be helpful in your mental preparation for the months and/or years to come.
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Anne Scott
Member in Phase 3
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Posted: Sun Sep 16th, 2007 02:36 |
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Dear Joyful,
thanks for the nice note. I wish that I had the luxury of timing my mental and cognitive work for those times that I don't deal with IP brain fog. It's the occupational hazard of being a professor in a cerebral institution that values you for your brain power exclusively. But amazingly, I've learned to grade papers, teach, read, run committees, etc., all while having diminished memory and concentration functions, and then try to give myself time to rest when I'm not "on call." I do know that there are "waves" to the IP, and that each regimen I've been on generates its own waves. I just don't know what my own personal "waves" are for the MP now; I'm trying to figure that out day by day. I just need some time to figure that out. I just want to have some reassurance that the bacterial load will actually go down over time.
Best,
Anne
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