Can you please critique my lyme regimen that I started a month ago (its rather hefty - i want to make sure my stomach is not going to explode). I am finally doing something about lyme that was not treated properly years ago (i am currently 26 years old). i am being treated at a fibo and fatigue center. any input/advice is greatly appreciated.
antibiotics zith (600 mg per day) flagyl (500 mg twice per day for 7 days per month) fluconazale (200 mg once per week)
stimulant provigil 200 mg per day
supplements maitake d fraction (6 per day) D-ribose (2 servings per day) pregnenolone (100 mg per day) artemisinin (100 mg per day) 1 pro boost packet daily 1 serving of Daily Energy Enfusion
hormone replacement (kind of a gray area since my levels are in the "normal range") bio-identical cortisol 5 mg per day bio-identical thyroid 25 mcg per day
Posts: 14 | From New Jersey | Registered: May 2007
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bettyg
Unregistered
posted
jersey, you'll learn a lot here plus in 56 pages i just sent you includes TREEPATROL'S NEWBIE archives of over 1,000 links!!
knowledge is power so read, read, read!
i suggest you do a SEARCH found at top under new post on FLAGYL MEDICAL TOPIC LINE any date; make sure you EDIT MY PROFILE to allow the longest period of time i told you about in what i sent you
leave membership no BLANK; click send, and you'll get a lot; read it!
it's wicked stuff for most of us; it was me!
we do NOT critique treatments on a PUBLIC board perhaps by PRIVATE MESSAGE ok. we're NOT MDS and most of us don't have any type of medical degrees ok.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hiya, "Joi-sey" - and welcome!
Since of course we can't actually "critique" a particular regimen, I'm just considering myself to be "remarking" on it!! Hearing others' experiences is helpful and with herxing, especially in the beginning, it's nice to talk to those who have gone before you!
It looks like a good regimen but do prepare for the Flagyl to knock you for a loop. Now, it doesn't for everyone, but for the majority, well, yeah.
Tinidazole can be substituted if Flagyl beats you too hard.
Provigil keeps my eyes open on bad days. It is wonderful -- for me, no speedy feeling, just awake vs. conked out.
Don't know much about your supps -- artemisinin is a natural antibiotic/antiparasitic and usually added for babesia treatment, along with mepron and zith. Have you tested for co-infections? Do!
You sound to be in good hands.
Watch carbs -- not your friend any longer.
If you take a really superb probiotic like Theralac, you might be able to phase out the Fluconazole... (with your doctor's permission, a'course).
Remember that it's ok to call your doctor and ask to "ramp down" if needed -- your Flagyl dosage may pack a hecka punch! Don't think of that as bad news; it's good news as you're making progress.
Hang in there and visit often!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
sounds like you have an excellent dr caring for you. Make sure you communicate well with his/ her office as you herx. And as other have added, take really good probiotics and watch out for carbs and sugars.
I wish you well! Posts: 663 | From NH USA | Registered: Sep 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
W E L C O M E !* !)*!)*!)! !*)!*)!*)!*)!*)!*!)*!)!
Yup, remember your probiotics and don't take them at the same time as your abx*)! Saccharmomyces Boulardii is good if you get abx related diarhhea- and if you get suddenly depressed or suicidal Flagyl Herxes can do that so be careful*)!*)!
Michelle M. is right. We are not MDs here (most of us anyway*) Sounds like a good MD is taking care of you but usually it takes time to resolve entrenched Lyme so be patient-
and welcome sincerely*)!*)! I hope you get rid of your symptoms- my life is so much betetr without mine*)!(*! I hope the same for you*)! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Flagyl can be tough to take, as others have noted above.
If you have emotional issues while on this protocol, you might want to speak with your doctor about cutting back on the flagyl first.
Posts: 2557 | From home | Registered: Aug 2006
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Normally Flagyl is not given at the start of AB's as it is a cyst buster and docs normally try and get the Motiles/CWD form down with cephalosporin/penicillin based Ab's before busting cysts with Flagyl/Tinidazole.
Also normally zithromax is always given with a lysosomotropic (Hydroxychloroquine/amandadine) all macrolides other than Ketek are not stable in the intracellular acid enviroment.
Its great the doc is treating Mitchondrial Dysfunction and Hormones (of which Fibro and Fatigue Clincs are known for) but you need to ensure they treat the Lyme correctly also.
Hope this helps Rianna
Posts: 1172 | From UK | Registered: Jan 2007
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posted
Alright great - thank you for all your replies. So i will def watch out for carbs - are they bad for lyme sufferers in general or more because i am taking antibiotics?
Posts: 14 | From New Jersey | Registered: May 2007
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quote:Originally posted by jersey321: So i will def watch out for carbs - are they bad for lyme sufferers in general or more because i am taking antibiotics?
Both. But mainly because the antibiotics kill off the "good" bacteria which probiotics replace.
I agree with checking out the Theralac. It's incredible!
posted
As soon as I saw your protocol I knew it was from a FFC as I recognized some of their supplements. I was a patient there for 6 months in 2006. Initially, I got much better on their protocol but crashed.
The doctor misdiagnosed my Lyme disease. First she said I had it because of a positive band 41 on a Quest WB. I was started on Doxy and Artemisinin and then was given a Igenex test. That was overall negative with many positive bands so I was told to quit taking Doxy. DUH!
I was up to a 7-8 last June but am back down to a 3-4. I was never able to recover to the level I was at a few months into treatment.
They diagnosed me with a growth hormone problem and the doctor I saw wouldn't prescribe it. The FFC could not balance my hormones. I was already taking B-HRT but quickly found I know more about it then the doc I was seeing.
I was already on Armour thyroid so I had high reverse T3 level. I credit my initial burst of energy to switching to T3, the active version of thyroid hormone. This was an elixir of life to me. The FFC doctor wouldn't go any higher than 100 mcg. Now I'm on 150 mcg from another doctor.
Many other patients with Lyme have had similar experience with this paticular FFC. I've moved on to a LLMD. It sounds to me like your doctor is more knowledgeable about Lyme than the one I saw.
I would like to caution you about starting so many different things at once. I hope they told you to add only one new thing every 3 days. Some of the doses used by FFCs are very high.
You're likely to be told any reaction is a herx. Instead of backing off meds they told me to stay with them and work through it. Stupid advice since they don't live in your body! Bb is a very slow growing bacteria. Skipping or pulsing ABX makes sense.
I went home after having spent big bucks with a shopping bag full of dreams that never bore fruit. I am still glad I went because I do have copies of all of my labs. Those I take to other doctors so I don't have to start all over. Yes, I'm still paying Quest off.
I must stress that EVERYONE is different. What works for you may not work for me. I'd be leary of Provigil. The body is fatigued for a reason. If your immune system is busy fighting off yeast, viruses and bacterial infection of course you'd be tired!
Stimulants and antidepressents can backfire because they stimulate the desire without making the body function any better. I thought about taking Ritalin but quickly found out from other message boards that chronic fatigue and fibro patients don't do well on these types of meds. Frustration levels are high along with side effects.
I was on a slew of FFC supplements and noticed no difference when I ran out of them. The only FFC supplements I buy now are Release & Renew and Rest & Restore. I saw a difference when I stopped and restarted these.
I buy some supplements on the web that are very close to those used by FFC. I like mitochondria boosters like: NADH and CoQ10. I still use Liver Care, Sam-e, Fish Oil, Vitamin D, 5-HTP, and Melatonin but not at FFC prices.
I am allergic to corn so I had issues with D-ribose. I was not able to do too many of their IVs because of a corn allergy. I do LOVE the memory IV and wish I lived closer to a FFC. Have they suggested IVs to you?
If you become jittery on the T3 stop it. They push to have you buy overpriced T3 from a certain pharmacy. I was able to order my T3 from another equally good pharmacy for only $18 per month not $45!
I'm not trying to be negative. Just want you to be aware of the some of the pitfalls. The FFC claims to help 90% of patients. They use their 1-10 rating system to compile these statistics. Hopefully, you will be one of the lucky ones!
[ 26. May 2007, 06:30 PM: Message edited by: Munch ]
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Have you been tested for coinfections? They need to be treated first.
As others have said, start with one drug at a time, and you might want to start on some of the higher dose ones at a smaller dose.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks again for all your responses! You all have equipped me with a slew of questions for my next dr. appt
I have not yet been tested for co-infections - i think i remember him saying he wanted to wait a month or so for that test (does that make sense)
As far as IV's, dr. g is hopeful and optimistic that it would not come to that - but he did say that iv's would be the next step if i dont react to my current treatment - i believe he said it would be 1 IV per day for 30 days
Posts: 14 | From New Jersey | Registered: May 2007
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