posted
Keebler- yes i have liver support and probiotics
Putnam- i feel crap waking up especialy in the morning. Peripheral neuropathy, muscle joint pains, GI issues associated with bart. And the list goes on. I tested very positive on bartonelle and my dr says it should be treated aggresive. Shes going to treat me for babesia too even with negative result.
Tutu- yes im now on 5 abx regimen, i really think its to much to handle! Im afraid im going to die after takin those massive doses! Is there anyone else like this?
I normally see people with 2-3 combo only
-------------------- Posts: 215 | From California | Registered: Sep 2011
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posted
You better be on high quality probiotics and tons of it. And NO SUGAR, etc.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Trust your body. If you think it is too much, call and ask. (I know, calling is another whole issue).
I have waited a couple of times and added the new ones in after 4-5 days for each new one.
Everybody's body is different, trust your instincts to let you know what is best for you. Doc's can lead us, but ultimately it is up to you whether to follow or not.
It is not too often I do my own thing against what the doc says. but intuition speaks louder.
I am not a doctor- i just listen to my body.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
i was just on 4 abx plus abart along with supplements. i was doing ok until i tried to go on a no fat diet and then i developed c.diff. i've had it before so i knew i was in trouble.
my llmd told me it was just a herx and to keep taking the drugs but i wasn't going to wind up in the hospital again so i stopped. i'm feeling better already.
last time i was off abx for 3 months trying to recover. this time, i will start back quicker but maybe not so many at once.
if your stool starts turning yellow, its c.diff.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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posted
The problem is i wont know if my stool would be yellow or not because im on rifampin which turns almost everything to orange.
-------------------- Posts: 215 | From California | Registered: Sep 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 2young2dieMom,
You mentioned you started a "no fat diet" - I'm wondering about that. The body, especially the brain and adrenals really NEED fat. Our nerves cannot survive without it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
- From The Franklin Institute Resources for Science Learning
Excerpts:
Nourish � FATS
FATS BUILD YOUR BRAIN
. . . About two-thirds of your brain is composed of fats. But not just any kind.
Your brain cells require very specialized fats � the same ones that built the brains of your prehistoric ancestors and enabled them to learn and evolve at such a fast rate.
These same fats are even now being incorporated into the very structure of your brain. . . .
. . . Myelin, the protective sheath that covers communicating neurons [/nerve fibers], is composed of 30% protein and 70% fat. . . .
. . . [BAD] Trans Fatty Acids Disrupt Brain Communication . . .
. . . Dietary Sources of [GOOD] Fatty Acids for the Brain . . . .
. . . Loss of Fatty Acids Link to Parkinson's and Alzheimer's-Study . . . .
[be sure to scroll all the way down as this article has a lot of great detail.]
Brain health dramatically improved by intake of omega-3 fatty acids and fish oils
January 02, 2006 by: Alexis Black
Excerpts:
. . . The omega-3 fatty acid known as docosahexaenoic acid (DHA) is an important ingredient for optimal brain function.
Earl Mindell, RPh PhD, writes in Earl Mindell's Supplement Bible, �There's a reason why fish is known as brain food. It is a rich source of docosahexaenoic acid (DHA), a fatty acid that is found in high concentration in the gray matter of the brain.
DHA is instrumental in the function of brain cell membranes, which are important for the transmission of brain signals.�
By making cell membranes more fluid, omega-3 fatty acids, especially DHA, improve communication between the brain cells, according to Mind Boosters author Dr. Ray Sahelia.
As a result, lack of omega-3 in the body can cause a communication breakdown in the brain, which is probably the last place you'd want such a breakdown to happen. . . .
. . . DHA remains the most important brain fat throughout life. . . . -
[ 10-21-2011, 03:16 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
This is just based on hubby's experiences so it may or may not apply.
He treated for years with docs who used either mono therapy or low dose combos. We got pretty much nowhere. But to be fair hubby had seizure-like spells multiple times daily and none of the seizure meds we tried worked. And when he started treating 8 years ago not nearly as much was known about tickborne infections -- especially the coinfections. Also he was extremely sensitive to all meds and herbs which were targeted to his known infections.
3 years ago he got to another doc who started him on low dose combo meds to treat babesia, bartonella and lyme all at the same time. In the past he had basically treated only 1 infection at a time. It took 8 months to work up to what that doc considered a therapeutic dose on a 5 drug combo. Hubby finally started to see improvement.
Also, once hubby got over the hump he can now take multiple meds at very high doses. Yes, he still has a few ER and hospital visits, but actually less than when we were undertreating.
He kept pushing the doses and we do think we have gotten the bartonella. And then he did some IV meds for lyme with another doc and felt the best he had in the 10 years since he got sick.
In theory if you can get rid of the bart then your immune system should be better able to handle the other infections. Hubby's CD57 did improve quite a bit.
But since he started aggressive treatment for babesia last January it has been a real roller coaster. Plus now he has positive tests for serratia marcescens, rocky mountain spotted fever and ehrlichia/anaplasma which we did not know he had.
My personal opinion would be to go after the bart aggressively and hold off on babesia treatment for now. That would mean holding off on the A-Bab.
I would also start each of the other meds/supplements slowly (hubby always starts at 1/4 or 1/2 the suggested dose and works up). And only start one new thing at a time.
My rule is to try to keep the total number of prescription meds hubby takes to 10 or less (that is including symptom control meds as well as antibiotics).
I think 5 is the most antibiotics/antimalarial meds he has been on at once. But he is usually on multiple herbs as well.
If you are trying to kill 2 infections at once you will usually need at least 3 meds and if the goal is to tackle 3 or more infections at once you would usually need 4 or 5 meds.
Monitor your bloodwork on a regular basis and as someone else said -- listen to your body. Only you know what you can tolerate regarding herxing or symptom flares.
The flagyl and boluke or lumbokinase can both be very helpful but both can cause very bad herxes. IV flagyl put hubby in the hospital and ER and started his daily low grade fevers which are still present 6 months later.
There may be some disagreement among LLMD's, but I think that flagyl can work on babesia especially when combined with other babesia meds. Bactrim is one of the mildest babesia meds, but if you have never treated that the combo could be pretty potent.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I took that many at once. It seemed that I could handle anything.
I did daily coffee enemas for detox. I also had my liver enzymes checked monthly.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I think it's way too many specially for anybody who has ever Had c diff or people like me with absolutely no immune system
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Everyone is different (I hate saying it as it sounds trite sometimes, but it's true). I had to start out on tiny doses of a single antibiotic and work my way up over months and even years to a full dose. Luckily, the med I was on did not create a resistance.
Some people just can't handle high doses of multiple meds. It may be that in my case it was because I was infected for so long (35 years), so my system had become very sick and weakened by that point.
No one can tell you what to do of course, but I would say that no matter what the situation, if your LLMD or other prescribing Dr. cannot or will not work with your concerns and be flexible, then you should find another Dr.
There are no golden, steadfast rules when it comes to Lyme and co-infection treatment, just useful guidelines.
There are many different ways to treat, so it's not good to see a Dr. unwilling to adjust to their patient's needs or concerns. Not saying that's the case here, just making a general statement.
Some LLMDs go by the philosophy that this is not a sprint but a marathon. This is based on the knowledge of the Lyme pathogen, in that it replicates very slowly compared to many other bacteria.
The longer the replication cycle, the longer one must take antibiotics to treat the same number of cycles (when the bacteria is most susceptible to antibiotics).
This is the case in Tuberculosis, for instance, which is treated with multiple antibiotics for up to 18 months or longer, and can also relapse, like Lyme.
This is all just to say that you don't need to feel like going with all guns blazing is the only viable approach in all cases. If you are concerned, please speak with your Dr., and see if they are willing to be flexible and work with you as a partner in your health care.
posted
I started adding the flagyl 500 bid first to try after two days i started having headache sour stomach chest tightness. What will i do as i still have the bactrim ds pending also to be taken.
Should i drop flagyl and try bactrim instead?
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