randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
in a discussion with someone yesterday, her treatment is massive abx immediately, and multiple other drugs. things for sleep, things for pain, things for this and that.
her first prescrip bill was over 200 and she's barely making it.
now my friend ann believes in slow and steady. she's doing herbal, parasite, you name it, and she's doing pretty well. she has ups and downs but overall she says she's feeling better.
however, p is herxing severely, had several er visits and is doing (in my opinion) poorly. she can barely function. and with no money or family to boot.
we never settled this argument. (picture three of us with lyme going at it in a restaurant over this..)
so is it better to throw the garbage can at you or do some people do better with the slow and steady routine, like ann, with her exercise, health food, natural approach?
begs the question doesn't it?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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gigimac
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posted
Awesome question, I have no answers but look forward to others responses.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There is no way to "settle this argument." It should be no argument. It should always - always - be about what works best for each person.
Both approaches have worked for some. Both have failed for others.
But, it's not just hit it with a sledgehammer or an herbal tea. This requires a tremendous breadth of knowledge. Some doctors may not be as complete with that as we need. Some are.
I'm not sure if you are really asking for yourself or trying to "settle an argument" of sorts.
This seems to point back to self treatment, figuring it out on your own. That's a very slippery slope.
IMO, it's best to have the advice of an EXCELLENT LLMD who is ILADS "educated" and well versed in each of the treatment options (old and new), as well as knowledgeable about all the support methods for YOUR BODY (now and as it changes).
Now, of course, you have an idea of what will work for you - to a degree - or, at least, what has been just too hard to tolerate. So finding that best match can be very hard (especially as THE perfect doctor does not actually exist).
Still, I think we need people smarter and steadier than ourselves to ferret out the choices and hold the lantern.
Sometimes it's best to have both a LLMD and LL ND on your same team. Even better if they work together or at least know each other.
IMO: a herx is NEVER good, or at least not good to try to achieve. It can stress the body too much.
It means the treatment is just too much to tolerate or the person does not have all the tools necessary to help support the body (assuming self-care is at least at 99% and no less).
But, sometimes, a slow approach can be ineffective so more force has to be applied to achieve results. If medicine is too weak, it just might not work.
In reality, a herx is nearly impossible to avoid. Yet, that would be the goal. Target infection but provide enough support so the barn does not collapse in the storm.
Also keeping in mind that everything that goes into the mouth or on the body has effects. Some good; some bad.
Be sure that other things are not too hard on the liver or kidneys, etc. or in other ways torpedo treatment. -
[ 05-18-2012, 04:20 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hubby has tried just about every approach out there in his 11 years of illness.
In my opinion it is better to start at 1/2 or even 1/4 of the "normal" or therapeutic dose of any new med. Then adjust as quickly as can be tolerated.
I also agree with only trying one new thing at a time if possible. And try to wait 3 or more days between med or supplement adjustments. A week or two is even better of course.
But I do think that people are too reluctant to try antibiotics sometimes and think herbs will work. The reality is that sometimes a month on the right antibiotic can do more good than 6 months or even a year on an herb.
The big unknown that makes treatment the most difficult in my opinion is not knowing what infections a person has which makes it very difficult to plan treatment with either herbs or meds.
I do think a combination of herbs and meds is the best way to go if one can afford it. And many supplements are not just useful but critical in my opinion. One for example would be lumbrokinase -- think everyone should be on that one.
As far as symptom control meds -- if you are very sick or need to remain somewhat functional then usually they are a necessary evil.
Some docs take the blasting approach and personally I have not seen a whole lot of success with that. Others pulse meds and again I have not seen a lot of results from that. Once the load is lowered that might work, but from the get go I am not convinced.
The reality is that so far there is no one treatment method that seems to be the answer for a majority of people.
Also, based on hubby's experiences I would not suggest treating just one infection at a time. We did this for years -- wasted a lot of time. The docs could not tell him which infection was causing which symptom and they would treat lyme for awhile and then try treating bart or babs.
Hubby made the most progress treating his 3 known infections all at the same time. He started slow and took 8 months to work up to what that doc considered a therapeutic dose on 5 different meds. This is after being in the hospital for 78 days the prior year and getting sicker and sicker because noone knew what to do.
So if you seem to be going downhill then you need to re-evaluate. Are the doses of herbs or meds too high or are they too low or are you missing a coinfection or other factor such as B12 deficiency for example?
Hubby had to leave the doc I mentioned above because the doc was unwilling to move on to IV treatment and also unwilling to be more aggressive with coinfections. Once you reach a plateau it is again time to re-evaluate.
We have done it in the past and I know others do it also -- do not stay with a doc too long. If they have run out of ideas or are unwilling to try something you have researched that seems reasonable then it may be time to move on.
Every doc has their favorite meds and some will not prescribe something outside of their comfort zone -- some LLMD's will not prescribe clindamycin or levaquin for example. If you think those meds might be helpful and have tried other things for the particular infections those meds treat then it might be time to find a new doc that would be willing to prescribe those meds.
This is not medical advice, just my opinions based on hubby's experiences.
Bea Seibert
So my answer to your question would be to start slow and steady and work towards massive doses of both antibiotics and herbs.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Great advice, Bea!
I am unfamiliar with lumbrokinase. What is it used for?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Ellen101
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Member # 35432
posted
I was wondering this exact same thing as I am having extreme difficulty tolerating my abx. The herxing is horrendous and I just can't believe that we need to feel so bad to feel good.
Posts: 1748 | From United States | Registered: Dec 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Catgirl,
Lumbrokinase is used to break down biofilm.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Razzle -- Actually lumbrokinase is used to break down fibrinogen. Fibrinogen is part of what causes your blood to clot. When people talk about hypercoagulation or thick blood they usually mean excess fibrinogen and that can be caused by an infection or some heriditary causes.
The best test for hypercoagulation is kind of expensive. The lab Hemex has a test called the ISAC panel (Immune System Activation of Clotting).
Lumbrokinase was developed by the Chinese from a certain species of earthworm. They even use it IV I think in the treatment of stroke victims. The expensive patented version is called Boluke. Hubby has always used the Allergy Research or Nuticology (same company) brand and buys it from vitacost.
Other supplements which didn't seem to work as well for him -- heparin (tried sublingual and shots) and nattokinase. There are other options that he has not tried. I do think the vast majority of tickborne patients need to be on some sort of supplement for hypercoagulation.
Biofilm is a more recent discovery regarding tickborne disease treatment. Lots of conflicting info -- is it made of minerals such as calcium and magnesium or composed of fatty acids or a combo of all the above? Very little actual published info, but lots of speculation.
Some people use EDTA chelation for biofilm and then there are lots of other supplements that are supposed to work -- but very little documentation of the effectiveness of any of those things.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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gigimac
Frequent Contributor (1K+ posts)
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posted
What are the benefits of lowering the excess fibrinogen? Does it relieve certain symptoms?
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
do you mean clyndamycin in pill form?? I don't see that mentioned much.
I thought Lumbrokinase helped thin sticky , sluggish blood for flow and oxygen to cells and smallers areas of body?????
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Bea,
Thanks for the info. I've seen lots of people recommending the systemic enzymes for biofilm...I guess because of the lack of published information on this, many people have the same misconceptions about it as I did. Thanks for the enlightenment
Gigimac,
Excess fibrinogen is created when the blood is "too thick" (prone to clotting). Breaking down the fibrinogen can improve circulation and relieve various symptoms depending on what part of the body is being affected by the hypercoagulation/"thick blood."
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
It would help if I read the long post's better duh
gigimac, I think it helps some with muscle pain in lower legs a bit.. I 'm concerned about circulation cause in bed so often..
Of course mag helps...these cramps also..
I would like some input on if it can make you bleed a little more with shots...
As far as slow and steady/ or through enough cr__ at the wall something will stick.....
I've not found that balance since this last big crash at time of diagnoses and again last few day's... Some kind soul said it was the Lyme talking ,when I was just muck inside and out...
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
seibert,
Have you guys ever tried Boluoke? Because I've done all the lumbrokinases and none of them compared to Boluoke.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
some people take wobenzyme but it's expensive.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Hubby has never tried the brand name Boluke. He currently takes 2 lumbrokinase 2 times daily -- he previously took 2 three times daily for several months. But of course he started with just 1 or 2 per day and worked up. Unless the brand name is twice as strong I don't think we could ever afford that.
He also takes wobenzyme. It works differently for him than the lumbrokinase. The lumbrokinase seems to cross the blood brain barrier much easier.
Currently takes 6 wobenzyme in a single dose. Wobenzyme is definitely not good to take if you have gastritis or a leaky gut. Historically it has been used primarily for arthritic pain I think. I always think of it like pacmen going after cellular debris. Not real sure that it works on fibrinogen -- is more an anti inflammatory.
Other people take serapeptase -- that enzyme is more for sinus infections.
All of these type of enzymes must be taken on an empty stomach so they will be absorbed into the bloodstream and not just help with routine digestion.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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