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Originally posted by METALLlC BLUE:

This issue appears to be much different than an allergie, but more of a sensitivity. Smoke, gasoline and other typical toxins/substances bring about this massive fatigue.

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Posts: 13116 | From San Francisco | Registered: May 2006  |  IP: Logged | 

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Hi Metallic Blue,

I've noticed that no one is responding to you, which means they feel like no matter what they say, it will not go over well and possibly start an e-brawl (new term just invented by me). Therefore, idiot fool that I am and after 7 years of Lyme & co-infects tx, plus years of illness before that, here's what I think.

I think your girlfried herxed like hell on the abx and yes, some people are more sensitive than others. People do herx so bad that it cripples them. Not sure of any advice I can give except that many people take minimum amount of abx only a couple of times per week for months, until they can take normal doses on a daily basis. Just don't really have any words of wisdom for you here.

As for the supplements... The subject of supplement allergies is being discussed and argued about all over the board right now; take a look. YES, your girlfriend is no doubt allergic to most, if not all the supplements. This is not at all unusual, as many others on this site have the same reaction, including me. I simply can't take them.

Regarding the steroids... In my not so humble and not so smart opinion, doing that could very well end your lady's life; if she's that sensitive, I just don't know. With a case of active Lyme and co-infects, OMG, that is surely too frightening for words.

I just don't see any "fix" to this dilemma that provides any ease or lessening of pain. I'm very sorry; I truly wish I had words of real comfort for you. [Frown]

Maybe if I bump this message back up, someone will latch onto it and help you. My sincerest best wishes to you both. [group hug]

ping
"We are more than containers for Lyme"

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Is IVIG an option?

There have been a few members who've become reactive to most everything and have had good outcomes with IVIG.

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MB,

I'm so sorry that this has happened to your girlfriend! I just wanted to add that the alternative MD I have seen several times had attended a conference and told me that Sulfa drugs bind to a certain receptor site and will not leave the body.

I had mentioned something about bactrim because my little sis had taken it when she was 25 I think and got hives for about 2 weeks. They were HUGE hives, moving constantly all over her body, she got scared when they moved to her lips/face.

After that I swore I wouldn't take a sulfa drug, but of course I could have had one years ago after my appendectomy and I wouldn't even know it.

I don't know if the receptor site has something to do with it for your girlfriend or not.

Sigh...I know lots of people swear by sulfa drugs, but I have just heard of way too many people who have had lasting negative consequences from them or SJS/death, ect...

So sorry,

Ocean

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Could your girlfriend try a rife machine?

Lymers

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Only heavy load of infection (strong herx) or inability to detox comes to my mind. But perhaps there are more possible causes.
Did she check her thyroid, hormones etc?

I read that people with impaired detoxification pathways tolerate smaller and smaller dosages of abx as time goes on.

I remember that Rianna from UK had this problem when it got to the point that she was unable to tolerate even the smallest dose of one abx.
I think then she was taken off antibiotics and detoxed aggresively for a few months. After that she was able to tolerate normal doses of abx.
You can search her posts for more details.

I would do a test for your girlfriend - HLA-DR4 test. (search here on Lymenet, this test is highly recommended)

And maybe check some environmental toxins like for example molds or heavy metal toxicity. (did she react to NAC or ALA? These substances can "stir" heavy metals. NAC and ALA are also very rich of sulphur.).

I hope you will solve this problem.[quote]

We thought the infection load and detox were the only problems initially. Thyroid is normal but her adrenal glands were a problem. Unfortunately the doctors have addressed endocrine issues with treatments. the sensitivies worsened with most treatments.

Dr. H in NY said "There isn't much more I can do for you, i'll have to referr you on again." Dr. H already referred her to Dr. Cowden, and no progress was made. We've done what she advised. Glutathione orally, intravenously, and nebulized did not improve symptoms. We will run testing for Mold as that wasn't done. Environmental toxins may be a possibility since she gets sick around most of them, but I don't think that started the problem. ALA and NAC did not worsen symptoms. Bactrim began the problem, then Biaxen made it a lot worse. She's been on it before without a problem, but after the Bactrim it became toxic. Lariam, Plaquenil, Minocycline, Ceftin, all caused the problem. Minocycline was the least of them in causing the problem, and small doses were used for many months at about 25mg, then finally 12mg. Now, none.

We will test for the HLA-DR4.

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mike, so sorry to read about your girlfriend's problems; no input, but up we go for those knowledgeable on this topic. hugs/kisses to both of you as you fight this.

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Sorry to hear about your girlfriend Mike. I don't know about others, but I didn't respond because I didn't see your thread.

I had hypersensitivity to all medications and supplements for a number of years. I could only tolerate small doses of some things. It was quite severe for a time.

I attributed mine to toxins since it got much better with muscle testing directed detox. This was a long time before I found out I had lyme so I wasn't on anything that was creating more toxins.

Now, if I'm not on a good detox regime, I start to get those symptoms back, so for me, I've no doubt it's related to toxins. Not sure if that's the case for everyone.

For some unknown reason the guaifenesin protocol for fibromyalgia helped me a great deal. I was also using muscle testing during that time and using a lot of homeomathic remedies for heavy metals. Once I started the protocol, I started to get a metallic taste in my mouth. It's possible that heavy metals were part of the problem and guaifenesin protocol helped with that.

I assume she has done binding agents such as cholestyramine in sufficient quantity to make a difference? Looked into methylation cycle issues, especially the sulfur and conversion of folic acid to the active form? Those would make a big difference in her toxin status.

Have you looked into KPU? Checked to make sure you have no mold inside your house or car? Those are all things that I think could tip one over into a highly toxic state.

If she hasn't already tried coffee enemas or colonics, I'd certainly consider those. Very useful for toxin removal.

I would suggest rife, not for more killing at this point but for lymph clearing. There are frequencies that could help clear her lymph system. I've been using them quite a lot lately via muscle testing.

I recommend that she find a good muscle tester to help sort through the problem.

Best wishes for you and your girlfriend.

Terry

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Sorry to hear about that Mike. I do not have good suggestions, but it sounds like you got some good advice above.

I have heard that some people have terrible reactions to Bactrim and that it lasts for a while. I would follow any route or treatment that can remove the lingering effects of the sulfa drug (bactrim), that could remove any traces of that. Hope she improves with time.

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Six, How about Dr. W in Germany?

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I have had bad reactions similar to that where I could not tolerate taking anything. It comes and goes. I still cannot be in a car that has leather...or be near the gas station,
But I dont know if I had it as severe as that.

I see you say she's tried homeopathy. That to me is the safest to try. Before trying to get infections, as with myself, I had to build the body back in balance first which is still a struggle. But I tolerate things a little better slowly. What I found helpful for this is a meridian stress assessment machine MSA- that tells you how to balance it , little by little. You can google a practitioner in the area. I think there is BIoset machine system that treats allergies mentioned on Better Health guy website. But I would find an electrodermal machine that can give more answers or kineisiology.

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I would avoid steroids at all costs. My daughter got steroids mixed in with some pain injections without consent. The doctor said it was about a tenth of what most patients get. I can not tell you how sick she was. It has been about 2 years now and she still is not back to where she was before the injections. She also is allergic to sulfa.

Vitamin D3 acts as a natural steroid, so you might get her levels checked and supplement slowly with that or make sure she gets some sun every day.

Perhaps working out a diet that focuses on foods for their beneficial properties--like beets and artichokes are good for liver problems and pineapple and papaya have enzymes, and coconut has very healing properties.

Essential oils might be helpful since they are used on the skin. Bay laurel is supposed to help lymph detox.

You also might try to make a homeopathic remedy specific to her with blood or saliva. You can find instructions on how to do that by doing a search here and just on the web.

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Sorry I don't have any answers just wanted to say I've had the same problem too. I am really sensitive to almost everything, some I can't tolerate at all.

I've always thought maybe I've had a detox problem, or a very high bacterial load.

I'm not sure how I'm ever going to get better when I can't tolerate most of the treatments. It's very frustrating! Hopefully someone will figure this out!!

Kathy

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Lacey, I also know how frustrating it is, but you can get better! You feel like you cannot being that you're reacting to all the food and environment.

Tell her not to loose hope. You can feel better just by building up the body to better fight the infections. I would even react to massage therapy. The therapist thought I was nuts and kept having me come back and I got sicker and sicker. If something does not feel right to you, it just might not be the right thing, even though everyone else under the planet would benefit from the massage.

There are 2 ways of getting better and one is killing the infections but the other is getting stronger so the body deals with the infection also.

I'd also avoid gluten and inflammatory foods. But gluten is the main one.

There is also a very clean company, Premier Research, and they use a specific kinisielogy to build the body first and then treat infections. If you google that you can find a practioner near you. I like that alot cause there are products are ultra clean and they test your body in the order it needs stuff done. But whoever treats her needs to know to be careful and dont overload the system. Its just counter productive.

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pab
Frequent Contributor (1K+ posts)
Member # 904

Icon 1 posted September 03, 2009 08:37 PM Profile for pab Send New Private Message Edit/Delete Post Reply With Quote A couple of websites given to me by my LLMD:

The Environmental Health Center-Dallas, Texas

American College for Advancement in Medicine

International College of Integrative Medicine

My 2 sons go to an ACAM physician in addition to their LLMD.

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For less than $200 you could order the functional detox test from Genova Diagnostics (the old Great Smokies Lab). That would at least give you a starting point as to whether the problem is a detox issue. That test shows if the phase 1 and phase 2 detox pathways are working correctly.

If there are problems then it might be advisable to do additional genetic testing from Genova Diagnostics or elsewhere.

Another alternative would be to find a really good herbalist who can suggest detox and blood clearing herbs.

Bea Seibert

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Have you looked at the Allergie-Immun treatment?

Though not a Lyme treatment per se, my understanding is that the main focus of the treatment is to get body regulations back into balance and to eliminate - or at least minimize - sensitivities to all kinds of triggers.

And there are no 'substances' to react to - just some watery drops (similar to homeopathic remedies). The cost would be known beforehand - one price, no matter how long it takes. (Well, maybe a little postage in there.)

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My wife has never tolerated any oral treatment for very long. Samento, Cumanda, Spiro, MMS, she has had to stop all of them because of sensitivity. I think it is because even before she had Lyme she has always been more sensitive to everything.

She can smell things that I cannot.

She can see farther than anyone I have met.

She used to be able to hear much better than me although now she cannot. I am assuming Lyme has degraded her hearing.

Can't eat spicy hot foods.

Some people are just more sensitive, and when you throw Lyme into it, the sensitivity becomes hypersensitivity.

That is one reason we have always came back to Rife type frequency treatments. It is the only treatment she can tolerate for the long haul.

Dan

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[quote]
I can totally relate to all you wrote about your girlfriend.Please try and get her tested for KPU Pyroluria. Do a search here for Pyroluria,KPU Kryptopyroluria. My docs article http://drrandy.org/article.html

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This sounds like me.

All of a sudden I could not take any medicine. I can't tolerate the ethanol in the nutramedix products. Taking medicines like nexium which I used to tolerate feel like poison in my body. I can't eat a banana or will get sick from the sulfur. I cant touch Nac, Ala, Glutathione or Artemisnin.

I have been looking into some of the stuff TerryK suggested.

I'm also going to look into KPU.

May as well do the $200 test and methylation panel to get clear answers.

Trying to guess will drive you crazy.

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I wanted to add I get all kind of burning and what feels like poison under my skin. I get compression in my head. I can barely move. When it's really bad I can't stand for more than 30 seconds.

When it is super super bad and I feel like I am a vegetable, can't think or more, taking Coptis helps - I think it gets the liver going producing bile. I've also started the Sparga which seems OK but not a magic bullet. If I take Yucca root at night I will feel better the next morning.

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Hi - she sounds chemical-sensitive to me; people with MCS react like this.

I'm with Bea - I would recommend doing the detoxigenomic liver bloodtest through Genova Diagnostics in NC to see what her genetic capacity to detox is in her Phase I and Phase II liver enzymes. It now costs $400, but is well worth it for those of us who are chemically sensitive.

Phase I is akin to the bathtub filling up with too many toxins.

The test measures the response of 8 enzymes in Phase I.

If we have a problem with the first two enzymes in Phase I, we react too quickly to chemicals.

If we have problems with others in Phase I, we react too slowly - ie, don't clear them well.

Phase II is like the bathtub isn't draining sufficiently.

They test for four major pathways out of ten. The four: methylation, acetylation, glutathione, SOD.

They send info to you about the pathways that are amiss.

I also think it will be a good idea to consult with a doctor who knows how to work with that info.

I am blessed to have a brilliant alternative doc who understands it all and how to slowly start to treat for the missing pathways.

Maybe Genova Labs can let you know about doctors who order the test and you could consult about the results and how to handle it.

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If this could be due to any immune system abnormalities (like over-active immune system), I would try Low Dose Naltrexone. See http://www.lowdosenaltrexone.org for explanation on why it works and dosing.

It may cause a herx (more rare) in people with Lyme, but for a lot of people, it doesn't cause much in terms of side effects or herxes.

I think it is worth a shot. I feel that LDN has "modulated" my immune system to be more normal, but that is just the sense I get, I don't have labs to prove it. I see it as poor man's IVIG.

It only costs like $30 per month. Just get it from a compounding pharmacy that is able to properly prepare it.

There is also an excellent description of why it works in "The Lyme Disease Solution" by Singleton.

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I also wanted to add when I get the fatigue it's out of this world and I feel like I am going to die. It is honestly so surreal. One time I got a glutathione IV.. about 30 minutes later it was the most horrific experience of my life and I ended up in the ER. I don't know how anyone's body could ever feel this way. NO ONE understands.

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Has she tried things like activated charcoal or cholestyramine? Those might help too.

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Bigdreams, re the glutathione issue, my doctor wants me to try Max GXL capsules. They have seven glutathione precursors in them. I haven't tried it yet.

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Mike,

I don't think that a poisoning with Bactrim can cause a "chemical injury" to such an extent as your friend is experiencing.

I rather think that she got a trauma due to the Bactrim poisoning and this trauma now makes her react to anything that looks like a pill... (simply put).

I would recommend to look into the Amygdala Retraining Technique

http://www.guptaprogramme.com/

The first 3 sessions are free to download and it explains very well what can happen in the brain due to such traumas.

The author also said that people with MCS had success with his training (doesn't say so on his website but in a mail to me).

All the best to your friend,

Gabrielle

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Lot of alt med suggestions here, which is not up my alley, so just one thought: someone who used to post on lymenet also seemed to have MCS and found that low doses of IVIG occasionally seemed to help.

But this can be expensive and is IV administered, so maybe as a last resort, after you have tried other suggestions that seemed promising.

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Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | 

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Originally posted by METALLlC BLUE:
[QUOTE]
Thank you for bringing the message up. I do think that others are concerned about providing advice on this subject. I appreciate your opinion even though it's nothing new. Your support is still encouraging. [QUOTE]

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Posts: 1302 | From Back in TX again | Registered: Mar 2005  |  IP: Logged |