posted
For the last six months of lyme infection treatment with LLMD and on abx for all these period, I didn't feel any better. Actually I am feeling worse. I shared same with my LLMD in last visit (march first week), then he said that my WB came negative for lyme and co infections through Igenex which was taken in last September where as my labcorp was positive which was taken in last July.
The abx I a am on are
MinoCyclin 100 MG Azithromycin 600 MG Plaquenil 200MG X2 DAY Bactrim DS - used for 2 months and then discontinued because my LLMD replaced it with Rifampin.
Supplements,probiotics.
I started 300 MG of Rifampin in the first week of March, my shortness of breath had aggravated, took a break for 24 hours and started again. Then increased to 600 MG after a week, I felt very sick on this like flu like symptoms, fever, shortness of breath, chills,depression, anxiety,panic attacks,mood swings,necktrembling,shakiness in hands. So I called my LLMD. The Nurse Practitioner told me to stop taking Rifampin and continue taking MinoCyclin before dinner and Azithromycin,Plaquenil after dinner.
My concern is the NP didn't follow up with LLMD until today as I called them twice to remind them to follow up with LLMD.
Thank you, healthy
Posts: 46 | From Maryland | Registered: Aug 2009
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We're on the exact same protocol and dosage, minus the Bactrim DS for me -- which I plan to be adding within the coming weeks.
I'm sorry to hear you're not making any improvements. I'm sorry to tell you, but it has been doing well for me. But, I also attribute my lifestyle, diet and supplements to be a major contributing force behind my improvement.
If I were in your shoes, I would seek out a second opinion at this point. Hopefully, you have other LLMDs in your area who could give you another opinion, and it might not hurt to see your GP and have a battery of standard blood-work done.
Lots of other problems mimic Lyme symptoms and so forth (e.g. Hypothyroidism, vitamin deficiencies).
Then again, after reading your posts, it seems like you just might be having problems with the medications or it's causing a herx reaction of some kind. I've had similar herx's just from Cat's Claw and my current ABX regimen.
How did you feel while you were on Minocycline, Azithromycin and Plaquenil?
Did you notice any improvement before you added Bactrim DS or Rifampin?
Are you pulsing Artemisinin as well?
Well, I would continue doing what I feel comfortable with until I get a second opinion. I feel like if I stopped I might lose any progress I've made with the ABX, so I'd contact a doctor first.
posted
I am happy to hear that you are doing well. I had mixed days in total before adding Rifampin.
After adding Rifampin my life became a disaster. When I feel little better I tried to do the Pilates but not able to do for atleast 10 minutes, I had to take break to catch my breath.
Do you mind to share what you do for workout,diet changes. I have asked my LLMD regarding the diet, he said there is no need to do any changes(but I read many times that it is better to go GF).
I do take supplements(NT Factor,Botanical Treasures, COQ10,Probiotics,Vitamin C, B-Complex,Magnesium)
Thank you
Posts: 46 | From Maryland | Registered: Aug 2009
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I've have always worked out in the gym. Even through the roughest of times, I refused to let my 26-year-old body be put down to rest. I've been going 3-4 times a week, and do a weight-lifting protocol that lasts about 45-60 minutes.
It's mostly upper body workouts like bench press, shoulder lifts, curls, pull-ups, crunches. Everything I do has my own added twist because I've been going for over 7 years.
Occasionally, I will do a little cardio on a treadmill, eliptical, or bike. But, I don't do much because of groin pain I suffer from.
However, my diet changed drastically in December. To tell you all the things I cut out would be way too long. This is a summary of what I eat daily:
Meats (chicken, steak, beef) Rice Beans Salad (romaine lettuce and leafy greens) with olive oil and lemon as dressing Vegetables (broccoli, carrots, peas, peppers, stir-fry vegetables, etc...) Fruits (apples, bananas, pineapple, grapes, etc...)
Snacks include dark chocolate and my favorite, Teddy Grahams! But, I don't eat these every day.
You might think, "man, that sucks!" And, it kind of did at first. But, I felt like crap for so long I didn't care about eating the same stuff everyday. I want to feed my body the BEST stuff I can all the time.
Now, I'm used to eating this stuff everyday and don't really miss the pizzas, burgers and junk food I had all the time.
You should notice you feel better almost immediately after changing your diet. All the carbohydrates from breads and sugars just make us really tired.
Now, I also drink A LOT of water (6-10 bottles a day), and eat 2-4 whole lemons daily. This is more for detox and to help my body clean out this infection.
I also am currently using a whole body cleansing kit from Enzymatic which includes taking Milk Thistle, Fiber and Laxatives. My understanding is that this will not affect the efficacy of my medication, and might in fact increase their absorption into the digestive system. Remember, anything you can do to help you body is key!
I do have a soda every couple days or so...so I don't go crazy, but feeling better is the real response I'm looking for, so I don't worry about many other things.
Other supplements I take are Olive Leaf Extract, Vitamins B through E, Glucosamine and Chondroitin, Fish Oil, Probiotics, Magnesium, and Turmeric).
I've been doing really well, but it took a few months to get where I'm at today.
I'm wishing you well, my friend!
P.S. When I'm having air hunger / chest tight-ness issues, I take a couple tablespoons of Lecithin Granules (can buy in a vitamin shop) in a glass of water, and chug it down. Usually, I notice relief within 15-30 minutes.
posted
"healthy"... you do understand that you will feel way worse for quite awhile before you will feel any better??
Be careful of eating fruits. Granny Smith apples are OK. No white foods, like bread, white rice, potatoes, etc. You don't want candida (yeast) on top of your Lyme.
PS.. I don't see any need for a second opinion unless you have lots of money to toss around.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Ahh, I'm glad LymeToo commented. I don't eat white rice, only brown rice; Uncle Ben's rice in a bag is so easy to cook in 12 minutes. Add a little olive oil for some good flavor.
As far as fruits go, if you follow Dr. B's Guidelines your choices will be more limited, but I'm not strict about my fruits.
BUT, I do stay away from dried fruits. Only because I developed food intolerance with my infections, and I cannot handle any mold-type foods well. So, I don't eat mushrooms, sour kraut, cheese, tomato sauce, etc...
With respect to LymeToo's knowledge, you can help yourself deal with the down-swing of starting your treatment by preparing your body with great nourishment. I.E. diet, exercise, and rest.
This was my "pre-gaming" regimen so to speak, prior to starting my ABX treatment. I did have some down-swings (herx-reactions) on the treatment, and still do, but I believe it helped me continue to feel mentally like I was improving overall.
Also, I think it depends on what type of protocol your doctor will put you on. For me, low-dose therapy has proven effective (so-far cross my fingers hope to die), which is probably why I have less herxing issues than most do. But, when they happen...they are intense.
To conclude, I'll answer your question. Did I feel fatigued? It's indescribable.
I would sleep 8-9 hours a day and feel exhausted waking up; I would sleep through my alarm clock, no matter how important it was I get up; 2 hours after waking up, I needed a nap; I had zero attention span and was in a constant haze. Worse, I developed Plantar Fasciitis and couldn't even stand on my feet for more than 10 minutes at a time. I had to get orthodics just to walk around. My pediatrist told me I can only be barefoot in the shower and in my bed. So, yeah...I know about fatigue and pain.
But, going to the gym for me symbolizes my youth. No matter how bad I felt, I wouldn't allow myself to be put down by this disease; even when I didn't know that I had Lyme disease yet. I fought myself into the gym, and did a workout. I could I only do 4-5 exercises before I was exhausted. Then, I'd have to come home for a nap. I was literally fighting myself to go a place that I normally love to go.
After a workout, I always felt better inside though. Scientifically, I was building up my endorphines...you know?
Getting through this disease takes determination. You can't forget that deep inside your sick body is a soul that has passion and love for life. That's what reminds me through my roughest times that life is worth living.
I have sleeping issues. I am able to fall asleep but can't maintain the sleep. Thank you
Posts: 46 | From Maryland | Registered: Aug 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When I was being treated for lyme and company, I was only allowed to eat a little brown rice, and I was not allowed oatmeal or anything with flour. So, I don't know about that Oatmeal bread.
I wasn't allowed to eat any starches, really. I ate quoina flake porridge for breakfast every day. That was the closest thing to a grain I was allowed.
You can find this great recipe if you google "Body Ecology Diet" and check out their anti-candida website.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You buy quoina flakes at a health food store. The flakes are different from whole quoina.
I did not get tested for food allergies.
My lyme doctor required a strict anti-candida diet throughout my lyme treatment. You can read about it in the Burrascano document Wolfed Out posted above.
To summarize it, I ate only meat and non-starchy vegetables and the quoina porridge. I drank only sugar-free kefir and water with fresh lemons squeezed into them. That is it. An egg every once in a while.
No sugar of any kind including white potatoes, anything made from flour, etc. No cereal, no grains, no fruit except lemons. No sugar substitutes either. Stevia is the only sweetener allowed.
I have had others who went to my doc tell me that the diet alone made them feel better. My doctor was a purist. He did not hand out nystatin and diflucan to his patients. He expected you to eat the strick anti-yeast diet all the time.
Posts: 9931 | From Maryland | Registered: Dec 2007
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