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Rachel--24

Omg...i Might Be On To Something

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Nancy, yes, bart is short for bartonella. I took Levaquin for the bart along with a bunch of other drugs for Lyme and babs (babesia). Dr. R is a good doctor, too. I hear he likes IV more than Dr. H, though I've heard of Dr. H putting people on IV from the beginning.

You could be feeling better already .... I did when I started the drugs. But don't plan on much about three weeks into it, the Mepron will cause a heck of a herx about that time .... I couldn't even walk to the bathroom during that first herx! But afterward, I saw great improvement.

I take Enula for babesia, too. For babesia I'm on Mepron, Zith, Artemisia, and Enula (I'm on some other things too .... PM me if you want the whole list, I don't like to share the whole thing in public view :)).

I still need to sit down and type out the supps I'm on .... later. :)

Carla-

I would PM you if I only knew how...I will figure it out!

I'm glad you heard good things about Dr.R. I am wondering though, if he will also deal with all the complications from Lyme and if he will deal with them in a holistic manner. I completely trust his instincts with the dealing with the bacteria, etc...I guess it is more down the road and the big picture will remain the question and only time will tell as we start to deal with it. I think this visit, he squeezed me in and wanted to just get going on killing off the suckers!!!We spent most of the 2 hour visit going over symptoms of the Lyme, Bart and Bab -see I'm getting the lingo already! I'd put a smiley face, but I don't know how to do that either.

Some things are feeling better, like the flu I have had for the last twenty years is wearing off, but the brain and eye symptoms are getting worse.

Anyway- I will PM you as soon as I figure out how. I don't even know how to respond to more than one quote in a person's message, you know, to separate them out and respond to each part!!!

Look forward to more talks-

Nancy

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What were the side effects?? Were your shots from a compounding pharmacy......or did they have added ingredients?

Yes the shots were from the compounding pharmacy. Side effects were like a herx...extreme fatigue, pain and fascia pulling all over my body like saran wrap pulling tighter and tighter. This man from the sulfur stories yahoo group said that methyl B12 could be dangerous for people with mercury poisoning as it creates a methyl/mercury neurotoxin crossing the blood/brain barrier. This concerned me very much. If I were to do the shots again, I would do hydroxy B12. I agree that it has to get better before it gets worse, but this was dabilitating and a bit scary. My extreme fatigue did not become an issue for me until I started the B12 shots. I almost feel that in the big picture of the past 2 years, it has made me worse.

I've read a lot about MB12 shots as an effective treatment for improving the methylation cycle in Autism. The vast majority of these kids have difficulties with the methylation and sulfation pathways.

And to be honest, I don't know which pathway of mine is impaired. I have fibromyalgia which would imply the sulfation because of salicylic acid, but in the past 2 years I have Chronic Fatigue which would imply the methyl...I have read a lot that CFS is part of or like the autism spectrum of detoxing problems.

Do you think a hepatic urine enzyme test would help me figure out which of the two I had? What test helped you determine it?

I did BioSET treatments for awhile. Its a little different from NAET....but same principle.

What happens when you take T3?

How is BioSET different? Do you think that could help me with the T3. I do think I was overdosed by the other doctor and now can't tolerate it at all.

My symptoms are: terrible pain in my head, fullness in my head, agitation...almost like a panic attack and lots of crying. I got my adrenals tested and may have to go on Cortef or something because like I keep saying, having this low a thyroid is such a bummer for me and my waistline!

Thanks for all the info...I will do more research about my blocked pathway.

Nancy

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Yes this gets really old fast. How long has is it been now since ABX? It took me 8 months before I started noticing progress, before that it was mostly herx.

SHerry

I've been on abx since December. So it is coming up on 8 months. Part of the extreme fatigue could be the anemia, but I don't know. I am in a different place than I was when I had my last iron IV's, but they don't usually make any difference in how I feel.

Everyone,

Last night I noticed this strange rash on my leg. It was red with white around it, and it was raised. My mom freaked out because my first bulls eye rash looked almost the exact same way. So she googled some stuff, and it looked exactly like a bulls eye rash. :huh: I'm really blah about it. I don't know what to think.

Do you have to do something if you get re-bit?

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Last night I noticed this strange rash on my leg. It was red with white around it, and it was raised. My mom freaked out because my first bulls eye rash looked almost the exact same way. So she googled some stuff, and it looked exactly like a bulls eye rash. :huh: I'm really blah about it. I don't know what to think.

:o I don't know. :(

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Kassandra,

Do you think you were bit again?

I've heard of bulls eye rashes reappearing during treatment.....you might want to ask this question on LN. I know I've read about it several times.

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Kassandra, some people see a bullseye rash from treatment. :)

Nancy, to PM, click on my name, and the option to PM is on the list of choices. To use the smileys, look to the left of where you write out your post and just click on one. We'll teach you to multiple quote later. ;)

I do not know whether your LLMD knows much about the natural stuff or not. Mine has a reputation of liking herbs/supps, etc. But with a naturopath you would have both.

Okay supps:

Multiple (from LLMD)

Magnesium

Blood builder (iron, b12, folic acid, and vitamin C)

B Complex (50)

Host Defense (for immune system)

Probiotics-

Theralac

Ultra Flora

VSL#3 (as needed)

saccaromyces boulardii

because both parents have had cancer-

Dimension 3 (Xymogen)

Oncoplex (Xymogen)

Omega Pure 600 (Xymogen)

NT Factor

Juice Plus

Grapefruit seed extract

Cowden Herbs (www.nutramedix.com)

Serrapeptase

for heavy metals-

Zeolite HP

ALA

NAC

Artemisia (for babs)

Adrenal Essence (Xymogen)

Wow, didn't realize how much I took till I wrote it all down!!!!

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It could be from treatment, but my concern is that I was at Lake Arrowhead last weekend....it's an endemic area. And I was outside quite a bit. :ph34r:

So really, how would I know if it was from treatment or a new bite? Hmm...

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This man from the sulfur stories yahoo group said that methyl B12 could be dangerous for people with mercury poisoning as it creates a methyl/mercury neurotoxin crossing the blood/brain barrier. This concerned me very much.

I had read this same thing....and I was scared when all of my Dr.'s were wanting me to start the MB12 shots. I mentioned that I'd read that increasing methylation can worsen mercury toxicity....however, they were not in agreement.

One of my doctor's gave me an explanation....which I posted sometime last year. I've since forgotten exactly what he told me. I recorded my visit...so I do have all of the info. still available to me.

I dont know what to think about it since most kids with Autism do have some issues with mercury....and yet many experience improvement with MB12 shots....however, some do not improve. There has been alot of debate about how effective MB12 is as a treatment for Autism...but there isnt alot of issue being raised about safety or risks with MB12 and mercury.

And to be honest, I don't know which pathway of mine is impaired. I have fibromyalgia which would imply the sulfation because of salicylic acid, but in the past 2 years I have Chronic Fatigue which would imply the methyl...I have read a lot that CFS is part of or like the autism spectrum of detoxing problems.

I dont think fibro. symptoms necessarily point to faulty sulfation....at least I'm not aware of anything that would indicate that. I think Fibro. symptoms can be caused by many different things.....but I do think that hypercoagulation would be a factor. Chronic infections lead to hypercoagulation....and hypercoagulation leads to decreased blood flow, oxygen deprivation, and impaired nutrient transport. I think those factors have alot to do with the "tender spots" and other symptoms associated with Fibromyalgia.

Also, the majority of people with Fibro and CFS symptoms do have issues with hypercoagulation and of course...chronic infections, heavy metals, etc....since those are the things which actually trigger the immune system to produce fibrin...which ultimately leads to hypercoagulated blood.

You can google "hypercoagulation fibromyalgia" and come up with alot of info.

I think that treating hypercoagulation, dealing with metals as well as other toxins, and eradicating infections are the most important steps in reducing fibro/CFS symptoms.

Do you think a hepatic urine enzyme test would help me figure out which of the two I had? What test helped you determine it?

There is no test which directly identifies faulty sulfation...for me it was putting a bunch of pieces of the puzzle together.

My BioSET practitioner is one who specializes in metabolic pathways and correcting situations where the pathway is blocked due to immune sensitivities. During my time with her the sulaftion pathway continued to be an issue that was never resolved.

There are alot of factors which point to my problems with sulfation. Probably the biggest indicator is my inability to handle sulfites/sulfur....as well as phenols. The phenol problem points to a PST deficiency. The main reason for PST deficiency is lack of sulfate.

Another enzyme (sulfur oxidase) is responsible for converting sulfite/sulfur to sulfate....so if this enzyme is not functioning the body is unable to convert these coumpounds to sulfate...so there is a deficency. There would also be some reactions to sulfites/sulfur.....since they accumulate to toxic levels (because the enzyme is not able to convert them).

My conclusions are based on my own responses to things like phenols, adrenaline and other substances that are processed through PST/sulfation....as well as sulfites and sulfur which would indicate impaired sulfur metabolism.

There were other clues as well...including high copper and low uric acid. Its all pretty complicated and I wasnt able to make a connection between all of these things until recently. When I brought all of it up to my doctor who does ART it made alot of sense to her. She then tested me...using testers having to do with the sulfation pathway as well as many different types of phenols...and it did indicate that these were primary issues.

Basically, that resulted in a total shift in focus with regards to my treatment.

There are also urine tests for sulfite or sulfate which can be useful. I plan on doing one of these tests....just to see what the results show.

The sulfation info. is the stuff that tends to make people's eye's glaze over....so sorry if I confused you with any of it. I try to make it simple...but it just isn't.

Anyways, I hope it makes sense to you. :)

How is BioSET different? Do you think that could help me with the T3. I do think I was overdosed by the other doctor and now can't tolerate it at all.

I dont know all of the differences between BioSET and NAET.....since I have never done NAET and cannot compare the two. However, I do know that they are two different methods of testing and treatment...but basically the purpose is the same...to eliminate or reduce immune sensitivities/allergies.

I dont know exactly what is causing your body to respond negatively to T3...so whether or not BioSET can help would depend on what is causing the problem. If you overdosed on T3 and the circulating hormone triggered an immune response....meaning that now you are "reactive" to it....then yes...I think it could help. If the problem is something else entirely.....then it probably wouldnt do much good.

But what about your labs? Do they show that your T3 is low?

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Kassandra,

Since your on IV abx I wouldn't think that new bugs would have a chance to propagate.

I agree with Birdy.

The only way a new bite could cause more problems is if the tick carried another infection....which you are not currently being treated for.

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Kassandra,

Since your on IV abx I wouldn't think that new bugs would have a chance to propagate. Probably would've gotten fizzled shortly after entering your blood. :ph34r:

Birdy

Ok, lol. :) I do hope it wasn't carrying an infection I'm not being treated for.

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It could be from treatment, but my concern is that I was at Lake Arrowhead last weekend....it's an endemic area. And I was outside quite a bit. :ph34r:

So really, how would I know if it was from treatment or a new bite? Hmm...

Ok, lol. :) I do hope it wasn't carrying an infection I'm not being treated for.

I would call your LLMD since you know how to get a hold of him. I've heard of them switching someone to doxy if they get bitten again so that more coinfections are covered. But with you being on IV, I don't know that they would need to. I think it's worth a call.

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About coagulation (fibrin), a number of people with chronic fatigue syndrome have gotten perfectly well after some courses with papaya extract.

Almost all young patients.

They had the characteristic coin roll formations , where the red blood cells stick together like a stack of coins. They of course are too big for the capillaries (normal red blood cells are formed like a rubber band and squeese together to get through the capillaries). I have not read a word about natto on the chronic fatigue forums.

Some swear to B-12 shots but we have the other form, not the methyl form.

nora

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About coagulation (fibrin), a number of people with chronic fatigue syndrome have gotten perfectly well after some courses with papaya extract.

Almost all young patients.

Nora,

Hypercoagulation can be inherited or aquired....usually it is aquired. When it is inherited, the problems do not usually occur late in life....and it is not nearly as common as hypercoagulation aquired by such things as toxins and chronic infection.

Certain inherited gene mutations that may predispose someone to hypercoagulable states, such as factor V Leiden or the prothrombin G20210A mutation, are relatively common in the population, but it is thought that they add only a slight increase in the risk of actually developing a problem with clotting.

Other inherited hypercoagulable disorders, such as protein C deficiency, protein S deficiency, and antithrombin III deficiency, are relatively rare and are usually due to genetic mutations that lead to a deficiency or dysfunction in the coagulation protein that the gene produces.

All of the inherited disorders (except for antithrombin deficiency) may be seen in heterozygous (one gene copy) or homozygous (two gene copies) form. If someone has two mutated gene copies, they tend to have a more severe form of the condition, and if they are heterozygous in more than one condition, the risk of clotting tends to be additive (and sometimes they multiply the risk).

With inherited hypercoagulable disorders, the first thrombotic episode may be seen at a relatively young age (less than 40 years of age). The patient may have recurrent thrombosis, a family history of thrombosis, and blood clots in unusual sites (such as cerebral veins, hepatic veins, and renal veins).

Acquired disorders are more commonly known to be the cause of hypercoagulable states than inherited ones.

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I put a call in with Dr H. We'll see if he calls me back.

On a side note, my mom said we can order the Nutrigenomic test. I emailed Scott about it, and he said that he did it and he thinks it's very helpful. He said he wouldn't probably rush to do it again, but if Dr H suggested it...then he's looking for something specific. Also, he said Dr H is a "rock star" so he trusts what he requests. :)

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RACHEL.

I got my pills today. What do you think i should try first. Im thinking maybe something with soy and see how that reacts. I am really afraid to try the cheese lol.

paula

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RACHEL.

I got my pills today. What do you think i should try first. Im thinking maybe something with soy and see how that reacts. I am really afraid to try the cheese lol.

paula

Paula,

It might be helpful to read this page before you start with the enzymes.

http://www.enzymestory.com/Getting%20Started.html

Its all about how to introduce the enzymes, dosages, etc.

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About the coin roll formations and chronic fatigue, this was discovered by a practitioner in gothenburg, sweden where a cfs (the patients call it ME here) patient went. The practitioner looked at the blood with a dark field microscope (actually it is projected through a tv screen, so the patient can see) and the red blood cels were sticking together.

Then she got well from ME and many others from the ME forum followed and the young patients got better.

I read other places that this is very much used in Germany, and they can see babesia, borrelia , and the other infections in dark field microscopy, they are visible inside the red blood cell. A doctor White who is specialising in lyme in the UK does this doark field microscopy too and ther ewere lots of postings about this on the thyroid.about.com UK forum some years ago. He diagnosed all of them that did not get better on thyroid hormones with lyme. They were put on cat's claw. Sounds like he was not aggressive enough, like you are either taking a lot of ABs or a lot of herbs, not just samento alone....

The coin roll formations are visible in a normal microscope, one can even do that at home.

The theory is that since the body had the coin roll formation as a normal reaction to some infections, that in those patients the body had forgotten to un-switch the coin roll formation after the infection was gone.

The infection specialists here are totally uninterested in this since coin roll formations are normal.

But in those patients where papaya extract helped, the red blodo cells were normal afterwards.

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Interesting Nora. At the end of Under Our Skin, the new documentary about Lyme Disease, the Dr./scientist studying Lyme shows how borrelia clumps together with biofilm and that this is what causes it to become chronic.

I wonder if these two theories are explaining the same thing.

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Paula,

It might be helpful to read this page before you start with the enzymes.

http://www.enzymestory.com/Getting%20Started.html

Its all about how to introduce the enzymes, dosages, etc.

Thanks rachel. I did get some info with the pill, but this gave so much more info. Im going to wait til hubby is off again, just in case i have an reaction.

paula

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Thanks rachel. I did get some info with the pill, but this gave so much more info. Im going to wait til hubby is off again, just in case i have an reaction.

paula

Paula-

Ill be really interested in how the enzymes work for you. Keep us updated. I am always on the look out for something new to help with eating.

Miamia

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Host Defense (for immune system)

Carla, I have not heard of this. ;)

Probiotics-

Theralac

Ultra Flora

VSL#3 (as needed)

saccaromyces boulardii

You take different probiotics at the same time or do you rotate? I rotate.

All these supplements...were they all at the recommendation of Dr. H or did you add some of your own? Only asking, again, to help me make a doctor choice.

NT Factor

NT factor...is this by Researched Nutritionals? I was concerned that the Beta Glucan was not gluten-free and the colostrum is milk and I can't do milk.

I have been on ABX for only 6 days and I am having constant pain in my upper abdomen, which I think is the small intestine. I have spent so much time healing my tummy to ruin it very quickly. I take heavy duty probiotics and enzymes but don't know what else to do it is coming on so strong. I have Slippery Elm and DGL but I do know there are some interaction issues there. Slippery Elm is not supposed to be taken near medication and that is when I need it and I think the DGL gives me a sulfur reaction or something.

for heavy metals-

Zeolite HP

ALA

NAC

I don't know what Zeolite HP is, but does that chelate the metals and if so you do this concurrent with the other meds? I only ask because I am wondering if I should be getting rid of metals at the same time, but also wondering if my system could handle it, and wondering if my Doc will deal with that or not and then wondering which course to take...something as natural as cilantro tincture (good for mercury) or something a little more hard core. I stopped the ALA because I read somewhere not to take with Mepron.

I jumped in the ABX so quickly because I was SO symptomatic, but I want to back peddle and make sure I am looking at the big picture. I have to relax and realize that this is a process that takes time. I won't know if Dr.R does deal with the metals, secondary issues, etc until I see him next and discuss with him.

Adrenal Essence (Xymogen)

Does this do the same as, let's say Cortef? My adrenals are real low but I have trouble with porcine adrenal gland extract.

Thanks for sharing...I know you didn't want to list everything, so I appreciate it. I figured out the quote thing and the smiley faces, I think. :P

Nancy

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Guest tamedandfoxed

Whoever was looking to have that page of French translated.. i know many people who speak French... but i can't find your post and i don't know exactly what it is you are looking for.. i doubt they would sit and translate all of it.. people are busy.. but if there's something specific they could scan for??

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Carla, I have not heard of this. ;)

http://www.newchapter.com/products/host-defense

You take different probiotics at the same time or do you rotate? I rotate.

I take all of them every day except for the VSL#3 which is stronger. I take it only when I need it.

All these supplements...were they all at the recommendation of Dr. H or did you add some of your own? Only asking, again, to help me make a doctor choice.

All recommended by Dr. H. :) He will vary which he recommends and he knows I am open to taking a lot of supps. I know other patients of his who take many fewer.

NT factor...is this by Researched Nutritionals? I was concerned that the Beta Glucan was not gluten-free and the colostrum is milk and I can't do milk.

http://www.ntfactor.com/ntf_ingr.html

It is not the same as Transfer Factor, which is from colostrum.

I have been on ABX for only 6 days and I am having constant pain in my upper abdomen, which I think is the small intestine. I have spent so much time healing my tummy to ruin it very quickly. I take heavy duty probiotics and enzymes but don't know what else to do it is coming on so strong. I have Slippery Elm and DGL but I do know there are some interaction issues there. Slippery Elm is not supposed to be taken near medication and that is when I need it and I think the DGL gives me a sulfur reaction or something.

I had a lot of bacterial issues in my gut. It might not be a herxheimer type reaction rather than undoing all you've done to heal it. My gut got significantly worse, then got better until it was completely healed with Lyme treatment. All my food sensitivities and stomach pain have gone.

I had a massive amount of worms (yes, I saw them). Once they were gone and I treated the bartonella coinfection, I felt fine.

I got so bad I could hardly eat. I lived on whey protein/frozen fruit shakes and "fudge" (made with almond butter, coconut oil, and other healthy things). Any solid food made me feel bad.

I don't know what Zeolite HP is, but does that chelate the metals and if so you do this concurrent with the other meds? I only ask because I am wondering if I should be getting rid of metals at the same time, but also wondering if my system could handle it, and wondering if my Doc will deal with that or not and then wondering which course to take...something as natural as cilantro tincture (good for mercury) or something a little more hard core. I stopped the ALA because I read somewhere not to take with Mepron.

Hmmm, my LLMD has me taking ALA with Mepron.

Be careful of cilantro, it can move metals in bad ways if you are really toxic.

Zeolite HP is the second Zeolite ... you take plain Zeolite first. Check out Nutramedix.com .... it's one of the Cowden products. :)

I chelated metals under my doctor's supervision while on the other meds. He tested me for them so we knew how much and what I had so we knew which chelators to use. Now I have only a trace amount of metals, but he thinks it's best to try to get rid of what's left, so I'm on the mild metal protocol now.

Chlorella is wonderful to be taking .... might help with your stomach problems, too. It will absorb the metals being released while your killing the bugs ..... it helps some with herxes, too.

Does this do the same as, let's say Cortef? My adrenals are real low but I have trouble with porcine adrenal gland extract.

I don't know what Cortef is, I haven't been on it. Here's the Adrenal Essence so you can check it out. http://www.xymogen.com/2007/formula.asp?code=000002

Thanks for sharing...I know you didn't want to list everything, so I appreciate it. I figured out the quote thing and the smiley faces, I think. :P

Nancy

Good job on the quote thing and the smiley faces. :) I don't mind sharing my supps .... I just don't publically share my meds to protect my LLMD. ;) But I'm happy to PM my med list to those around here.

It's a complicated process and I've relied heavily on my LLMD. I really haven't done much on my own except for parasite treatment .... but even then I was using some of his recommendations for bacterial overgrowth, it just ended up that the herbs I chose work on larger parasites, too.

Feel free to ask questions ... that's why we all stick around here! Both for the support, and to help those behind us in treatment.

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Guest tamedandfoxed

Mftnchn--

my french friend says the word that you searched with (or got searched with thru translation) was an adjective, which is used for everything.. so your search is not refined enough... she said she'd be willing to search for you for something if you would just let me know what it is exactly you are looking for.

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