This is topic Update 08/06: Stopping ALL supplements? Your thoughts...... in forum Medical Questions at LymeNet Flash.


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Posted by aMomWithHope (Member # 19255) on :
 
So I brought my daughter to see a craniosacral therapist in the hopes of giving her some relief from her headache. She has seen him 3 times now and has had no relief and no visible results from seeing him whatsoever. This has been the norm for us so far, i.e., have seen so many hopefuls--acupuncturists, massage therapists, homeopaths, chiropractors, now craniosacral-- with no relief yet.

He is not an LLMD but comes highly recommended and has been practicing craniosacral as well as applied kinesiology for many many years.

He did energy testing today on all her supplements as well as her meds. This is the first time we've ever had this done.

He wants her to stop all her supplements, stating that he feels (not sure that is the right term to use, but...) her adrenals and liver are too stressed from all the "stuff" she is having to process through those systems. He also feels that she has lymphatic blockage. I'm not sure what to make of this.

I'm very nervous about stopping supplements, but I do see how what he says can be true. Perhaps giving her a break from the supplements so that her body can just process the meds would be a good thing?

He also mentioned that I should not give one of her meds along with the other meds. I found this very interesting since I have read that that is true. He didn't know what the meds were so could not have known that. For convenience sake, I have been giving them all mixed in together even though the potency/absorption of one of them would be diminished.

I will try giving them separated now and see if that helps at all. It just gets so complicated with trying to find the proper breaks between giving the meds and supplements, but if I'm holding off on the supplements, perhaps it will all work out better?

Anyway, I told him I would not be comfortable with giving up the vitamin C nor any of the probiotics because I am worried about liver support and gut issues.

He definitely recommended that I stay on the probiotics but would prefer that I hold all supplements including the vitamin C but was willing to allow me to continue to give it to her as long as I reduced the dose she is on.

I am hesitant to change things, as over the past week or so, she is finally seeming to have a bit more energy.

The LLMD that we see doesn't deal with supplements, only abx so really everything I've added in has been from reading Burrascano's suggestions as well as Singleton's.

Should I heed his suggestions or continue as I've been doing? Would holding for a week do too much harm?

Thoughts? Feelings? Advice?

[ 08-06-2009, 07:27 PM: Message edited by: aMomWithHope ]
 
Posted by feelfit (Member # 12770) on :
 
Here is what I think Mom,

I think a break is needed every now and then. If you have been having minimal success anyways, this might be of some benefit.

The body does have to process all, everything that we put into it. Many supplements are synthetic, there could be overload.

I don't think that a break would be bad at all. Is he suggesting only a week, or is that your decision?

I would keep up with the probiotics.

This is only my opinion, others will differ.

Good luck,
Feelfit
 
Posted by ping (Member # 6974) on :
 
I whole-heartedly agree with feelfit.

After 5 years straight on abx and another 2 years off and on to get stabilized, my LLMD and I had to stop-and-clear at least 6 times to find out what was left. I am now in remission and off abx a year. During the entire tx time, the only supps I took were probiotic and a CaMgK+ because of an rx diuretic I must take for hypertension. (No, none of the herbals or anything else helps my HBP.) Yes, do keep up the probiotics.

Please let us know of her progress. In this way, we all learn.

ping
We are more than containers for Lyme"

Do let us
 
Posted by MorningSong (Member # 19989) on :
 
Are your daughters headaches due to a co-infection that your LLMD is addressing?
 
Posted by ping (Member # 6974) on :
 
quote:
Originally posted by MorningSong:
Are your daughters headaches due to a co-infection that your LLMD is addressing?

Good question! This could make a huge difference.

ping
 
Posted by TerryK (Member # 8552) on :
 
I've been getting muscle testing from others and doing muscle testing myself for decades and while I believe it is a helpful tool, it is not always 100% accurate.

The bias of the tester can influence the results. If he is biased against someone taking a lot of supplements, this could have influenced his testing. I have seen bias against prescription medications and even large amounts of supplements.

Did he test each supplement by itself and then all of them together? Did he include all the medications she is taking in the testing? If not, in my opinion, the testing would not be complete and thus not accurate. She may need some of the supplements to help her body deal with the medications? Maybe it is the medications that are stressing the adrenals and liver?

Personally, given that she is finally having a little more energy, I would be hesitant to give up all supplements based on the recommendations of someone that I don't know and have seen several times with no improvement.

Does he have a specific plan to fix the stressed liver, adrenals and blocked lymph? If not, I would seriously question his advice.

The approach that I've seen and used is a balancing of everything a person is taking. I would be inclined to add adrenal and liver support (assuming she is on meds that are stressing them) and find a way to deal with the lymph. Test everything together to make sure it is safe. Remove anything that is not helpful or safe.

Terry
 
Posted by Peedie (Member # 15355) on :
 
Mom
I think you are doing exactly the right thing. Separate those meds and take a break from the supplements.

I would suggest adding them back one-by-one to see if any one particular supplement is the culprit.

The Vit. C gave me stomach issues - so we switched to Ester C which is gentle on the stomach.

I got headaches from TMG supplement and so I have dropped that for now. I will try it's substitute DMG to see if I can tolerate it better when the shipment arrives.

Good Luck Good Mommy!
-p
 
Posted by aMomWithHope (Member # 19255) on :
 
The headache is Lyme- and/or co-infections-induced. At least that is what we are assuming since that chronic ongoing symptom is what started us on this road one year ago. The LLMD is treating the Bart and Lyme right now, and I am trusting him with regard to his expertise.

Regarding the energy testing: I brought ALL her supplements as well as abx, herbals, probiotics, etc. in for him to test. He tested some things together and some apart. For example, he took all 3 abx, placed them by her belly button, and tested together, then separately, then together minus one, etc.

He tested the supplements I believe based more on what their use would be for, i.e., all vitamin-containing supps together then one at a time, then mixing up the combos; did the same with the probiotics.

I don't know him well enough yet to know whether or not he has a particular bias regarding supplementation; however, I do feel that he believes the more we can allow our body to do on its own the better, so probably does lean more toward less-to-no supplements.

I probably agree with this view too; however my views over the past year have had to change considerably with Lyme and co being in the picture and forcing me to change many of my prior views on healing and treatments etc.

Good point about him offering a specific plan to fix the liver, etc, and no, I didn't ask. I guess I just assumed he felt that giving the body a break from having to process all the supplements, etc. would be a way to fix the problems. He is also a chiropractor and does craniosacral, so did some adjustments as well--so perhaps that would help too?

My biggest concern with holding the supplements is whether or not this will cause a setback in any strides she is making, i.e., increase in energy level as well as maintaining her liver support. I guess this is why I refused to eliminate the vitamin C because I feel she needs it for liver support.

He didn't state a limit to how long to hold the supplements. My feeling is that he would go indefinitely or until his testing proved otherwise. The holding for a week is my compromise in trying to allow his work to take hold without risking too much decrease in any benefits she may be having with supplementation.

The verdict is still out in my eyes regarding the accuracy of his testing--although as mentioned earlier I did find it interesting that he found the abx need to be given separately. I also feel that he was very forthcoming in stating that he would not go against the LLMD regarding the abx, and his testing on them didn't say that she needed to stop them, just that they needed to be taken apart from each other.

I can see some truth in giving the body some time away from all the supplements and meds. I just don't want to mess up any benefits that we may be finally making in regard to her turning the corner.

Thank you all for your thoughtful comments and suggestions. I really appreciate the input. I will digest this further and see what my gut tells me is the right way to go. I'll keep you all posted.

Thanks again!
 
Posted by Pinelady (Member # 18524) on :
 
My LLMD told me to stop for a week if I got too

sick. I did and it helped for the most part. I

agree with his assumption the lymph system is

overwhelmed. It is a very elaborate system that

most people do no understand. It is a complete

whole system to clean our pipes. I have read

massage of the whole body can help. But I do

think it would have to be very tender gentle

massage and may be the same principle that allows

other treatments to work.
 
Posted by Keebler (Member # 12673) on :
 
-

I've been there and done that and stopped on the advice of doctors who knew nothing about what I was dealing with and they made many assumptions. Their advice was very harmful to me. I will never take advice now from anyone who does not know about lyme - for matters that affect how I handle that.

There is also so much going on with lyme that I don't thing muscle testing can be all that accurate - especially with someone who is not LL.

---

I would not rely on muscle testing, especially from someone NOT lyme literate. As TerryK says: "The bias of the tester can influence the results."


I would NEVER stop any supplement that offers liver support while on abx. I might change, but never stop, liver support. Ever.


I also would never take the advice of a doctor who was not Lyme Literate even if just about supplements. You need someone who understands the complexity of lyme. This cannot be left to someone who is not ILADS-educated.


He may think the supplements are stressing but has not idea of how much more stressed the liver can be withOUT supplements.

Are there any LL ND (naturopathic doctors) around? Some links below.


---------

Dr. B. lists which ones are REQUIRED. They are required for a reason - protection. But, they can be shifted if one is not working right:

This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:

http://www.lymepa.org/Nutritional_Supplements.pdf

Nutritional Supplements in Disseminated Lyme Disease

J.J. Burrascano, Jr., MD (2008)

Four pages

==============


http://tinyurl.com/5drx94


Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang

web site: try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro through www.hepapro.com


===================


This author is an ILADS member:

http://www.steveclarknd.com/LymeDisease.htm


He, too, has a firm grasp of lyme and is a member of ILADS and a N.D.


===================

This author is also an ILADS member:

http://www.dancingviolets.com/media/pdf/LymeDisease.pdf


This explains a lot about how the body works when fighting lyme. It has some very detailed accounts and suggestions.

==========


http://tinyurl.com/6lq3pb (through Amazon)


THE LYME DISEASE SOLUTION (2008)

- by Kenneth B. Singleton , MD; James A. Duke. Ph.D. (Foreword)

You can read more about it here and see customer reviews.

Web site: www.lymedoctor.com


========


http://tinyurl.com/5vnsjg


Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections - by Stephen Harrod Buhner

web site options: www.gaianstudies.org/lyme-updates.htm

[email protected]

http://health.groups.yahoo.com/group/Lyme_Aid_Buhner/?yguid=166917351

-
 
Posted by Keebler (Member # 12673) on :
 
-


http://oneearthherbs.squarespace.com/diseases/herbs-to-help-the-liver.html


Herbs to Help the Liver

Excerpt:

. . .

The important thing to remember is that the liver is a hot (metabolically active) organ, and so tends to get congested and inflamed.

. . .

Protection

Turmeric root, wheat sprouts, schisandra berries, amla fruit, beet root and milk thistle seed are among the major sources of protective anti-oxidants for the liver cells, as are fruits that contain flavonoids, especially citrus fruits.


These should be used to prevent development of inflammatory disease, or for damage protection as in the case of persons taking strong chemical drugs or undergoing chemotherapy.


Deficiency

The liver can become weakened and deficient. If this is not corrected, it can lead to liver atrophy and depletion of glycogen stores, even hepatitis. Signs include fatigue, low blood pressure, hypoglycemia, dry eyes, headache, heat symptoms and irritability . . . .


Heat and Inflammation

To remove excess liver inflammation with heat signs or toxins . . . .

. . .

Pain

If there is liver inflammation with signs of pain and tension, use herbs that calm the liver and move the blood . . . .

. . .

- Full chapter at link above.

===================

http://oneearthherbs.squarespace.com/diseases/special-diets-for-illness.html


Special Diets for Illness


-
 
Posted by ukcarry (Member # 18147) on :
 
I agree with Keebler about live support, though if you were to stop supplements [apart from probiotics] for a short period, you could plan to give her juices, soups and natural dietary suport for the liver, such as artichokes, beetroot etc. during that time.

Most supplements and herbs work over the longer term rather than as an instant fix, so a short break whilst you reassess shouldn't really have a great impact IMO.

Peedie's suggestion to reintroduce one at a time is sensible.

These decisions are always hard to make, so hope to hear what you decided and how your daughter gets on,

Carry
 
Posted by MorningSong (Member # 19989) on :
 
aMomwithHope-

I am happy that you have an LLMD that you trust. I read in another post that your daughters headaches have been occuring for a year.

I would just make sure the antibitoics the LLMD has your daughter on cross the blood brain barrier or penetrate the central nervous system as not all medications do. Not questioning your LLMD, just caring for you and your daughter.
 
Posted by aMomWithHope (Member # 19255) on :
 
Yes, her headache has been one continuous headache for almost a year--July 10th will be the anniversary--yay, not!

I'm not sure if her meds cross the bbb or CNS. She is on Zith, Mino, and Rifampin. Currently going after the Lyme and Bart H., probably will add in babs duncani treatment next time I speak to the LLMD.

She hasn't been in treatment for this whole year. We spent a good part of the first 6 months trying to convince all the "experts" that it wasn't in her head--no pun intended--LOL.

We finally saw an LLMD in December, but we weren't happy with that LLMDs recommendations for treatment. We then switched to another, more famous one--:-)--so only starting true treatment around March.

Wasted a lot of time and suffering, but hopefully we are on the right path now.

We were told the headache would be the last to go, but I'm still trying to give her some relief from the head pain--even if a 5-minute break--while we wait for the abx to kick out those bugs.

Very hard to be patient after all these months, even if true treatment hasn't been that long--it still has been a year of her suffering, and that is very hard for me to accept.

Thanks again everyone for all your advice. I welcome more opinions---yay or nay--as I digest it all and figure out what I'm going to do.
 
Posted by klutzo (Member # 5701) on :
 
I take a lot of supplements, but I take every Sunday off from them, with the exception of Magnesium, since I have heart palpitations without it.

I know they are helping me, since 95% of the time Sunday is the day of the week when I feel the worst by far. I only continue to take the break from supps. because I feel it is a good idea to give the liver,etc. a rest.

I was told by an Integrative doctor to strengthen my adrenals with lots of vitamin C and B5, and then slowly and permanently remove other supps. as my adrenals improved, because they were stressing my liver and adrenals.

My adrenals have never improved, and the amt. of vit.C he had me taking caused diarrhea, so I continue to take supplements that have made a noticeable difference in my labs and in how I feel.

Re: Cranial Sacral therapy. I am sorry you had such a bad experience. My own experience was the opposite. I'd had bad TMJ for a decade, having to wear a hard splint in my mouth at night.

Three sessions of CST got rid of my TMJ completely. I stopped using the splint ten years ago, and the TMJ has never come back.

klutzo
 
Posted by aMomWithHope (Member # 19255) on :
 
Wanted to update:

We gave the craniosacral therapist a try for 6 weeks/6 treatments with no obvious or significant improvement in her headache--sigh--we had such high hopes for this to finally work.

Per his suggestion, I did hold most of her supplements for a week to see if there would be any relief due to a possible adrenal overload.

There was significant decline in her energy within a few days. I added back all her supplements, and her energy went back up.

So, for us at least, this experiment was proof that she needs every one of her supplements to regain her health.

Unfortunately, this was yet another therapist/hopeful that wasn't able to help, which is very discouraging.

Can't give up though--there is always someone else to try, at least while the money holds out!

Hopefully the abx too will kick in sometime soon?!
 


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