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Rachel--24

Omg...i Might Be On To Something

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Murph....Wow...I'm sorry for all you've gone through. :(

This is a very supportive thread...we sometimes pour our hearts out here....break-ups, deaths, family problems...we've been comforting each other for over a year now....through all the rough stuff that we've encountered. There are some great "listeners" here. :wub:

Just wanted to say if you ever need a place to "get stuff out"....we're always here. :)

I was just thinking about this. I'm sorry about your brothers too :( That's really hard.

And I don't think I ever properly welcomed you- so welcome Murph! I became gluten-intolerant after my mom died in 2003. Quite a year- lost my mom, became gluten intolerant and apparently invaded by an evil tick. Bad year! :angry:

OH lisa- try this for constipation:Super Cleanse

I got some at Whole Foods and have proceeded to Super Cleanse myself silly. It DEFINITELY works but be careful- it's pretty strong and I am the Queen of Constipation. I would strt with one a day.

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I grew up in Mt. Prospect, IL, just a couple miles outside Chicago (Go Bears!) but spent most of my adult life in the bay area - San Jose & Fremont. Right now I'm in Phx, where the forecast is 107/108F today! Ugh.

I'm so sorry about your brothers!

We were neighbors then. I grew up in San Jose and spent most of my life there, until I moved to Hawaii for a short time...I'm back in the bay area now though. One of my sisters moved to Arizona a couple of years ago. She likes it hot...I don't. :P I really need to go visit her...I've not been there yet.

Murph, I take NT Factor for fatigue. It helps a lot. Donna takes it, too. You have to get it through a doc, so maybe one of your naturopaths can get it for you.

Yes, and I think it is really helping me too. I noticed a difference in just a few days.

Yeah...I'm thinking he probably does use the IV's for glutathione so I'm gonna ask him...I think I see him in about 3 weeks.

I may ask him too...by IVs I'm assuming that just means by vein...and not necessarily (although could be) getting hooked up to an IV. The one time I had my blood drawn there, there was a girl hooked up to an IV. If I could go a couple of times a week for a shot, that'd be okay. I see him somewhere around the 25th...whatever that Tuesday is. :P I'm almost out of the liquid stuff I have...may have to buy one more before I see him.

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More on glutathione (not sure if this was one of the things you quoted or linked to Rachel...didn't have time at work today to really look at stuff)...

This article gives me hope that I can take the undenatured whey...maybe even in goat version if necessary...it also mentions the type of liquid glutathione I'm taking...liposomal. I found this article on a thread at lymnet on DMSA safety (well, actually it was a link in a reply to that thread).

http://www.phoenix-cfs.org/Glutathione%20B...%20in%20CFS.htm

There are several ways to augment one's glutathione. It is a good idea to proceed slowly at first if glutathione has been depleted for an extended period of time (months to years), because toxins and infections may have been allowed to build up in the absence of sufficient glutathione to keep them under control. If glutathione is then brought up rapidly, the mobilization of toxins can produce a Jarisch Herxheimer reaction, which is an exacerbation of symptoms that can make a person feel very unpleasant. Also, see the particular comments about mercury below.

Here are some approaches for building glutathione (Note that names of products, laboratories and suppliers are given for information only, not as recommendations. There may be others not mentioned that are satisfactory):

1. Oral supplements, such as the "nondenatured" or "native" whey protein products (ImmunoPro Rx or RenewPro), the "undenatured" whey protein products (e.g. Immunocal, ImuPlus, etc.), such as from http.//www.immunesupport.com or http://www.needs.com or http://www.Lame Advertisement.com, the fermented goat-milk-based version of whey protein, Goatein, available from www.gardenoflifeusa.com, amino acid precursors including N-acetylcysteine, glycine and glutamic acid (such as from Jeff Clark at http://www.cfsn.com), N-acetylcysteine together with dietary protein, or reduced glutathione supplements per se, both available from health food stores. One supplier of oral reduced glutathione is http://www.theranaturals.com.

A relatively new oral supplement is Lipoceutical Glutathione, which is reduced glutathione encapsulated in tiny liposomes made from soy-based phosphatidylcholine, available from http://www.wellnesshealth.com. This latter form is relatively expensive, but more of the glutathione is absorbed intact and appears to be carried to various cells of the body encapsulated in the liposomes.

Another liposomal form of glutathione called LipoFlow is available at http://www.arrowheadhealthworks.com. (See update at bottom of page for more information on these products.)

No prescription is required for the above oral supplements.

ImmunoPro Rx and RenewPro are actually "native" or "nondenatured,"being made from whey that has not been heated to high temperatures or treated with acid as in cheese making, which the "undenatured" products' starting material have undergone, so that they have more cysteine present as actual cysteine per se rather than the oxidized form cystine, and cysteine is more useable by the liver for making glutathione, particularly in a person who is depleted in glutathione.

The "undenatured" and "nondenatured" whey protein products can be problematical for those with allergies to whey proteins, and the goat-milk based version Goatein may be helpful in such cases, even though the fermentation process likely converts much of the cysteine to cystine. Many people with dairy allergies are actually sensitivities to pasteurized milk proteins or allergies to casein, which is the part of milk protein that goes into the curd fraction, rather than into whey, so a dairy food allergy or sensitivity may not be an allergy to nondenatured whey protein.

The amino acid precursors should not present problems of allergic reactions, but should be taken with high quality dietary protein to ensure that they are used effectively and that if mercury is present, its transport into the brain is not encouraged. Some PWCs do not tolerate glutamic acid well. In such cases, glutamine (or better yet, a product called Glutimmune, available from http://www.wellwisdom.com) can be substituted for the glutamic acid, and taken together with N-acetylcysteine and glycine.

The reduced glutathione supplements are a more expensive approach than the whey or NAC-based approaches. Free reduced glutathione appears to be largely broken down in the gut into amino acids, so there is probably not an advantage to taking regular capsules of reduced glutathione per se except for the cells of the intestines themselves, but Lipoceutical Glutathione is not significantly broken down in the gut and is able to enter cells in its intact form more easily, and LipoFlow likely behaves similarly. These latter two products may actually be absorbed through the wall of the stomach.

If there is a high level of mercury in the body, such as can occur if glutathione has been low for an extended period of time (months to years) and the person either has silver amalgam fillings in their teeth or they have consumed a significant amount of large, predatory fish, including tuna, then caution should be exercised by limiting the dosages of oral supplements that supply amino acids to the liver for making glutathione. There are two reasons for this:

The first is that mercury can be moved into the brain from other parts of the body by cysteine or N-acetylcysteine if the dosages are too high. Dr. David Quig of Doctors Data Laboratories recommends limiting the dosage of NAC to 300 mg per day and taking it with a high protein diet if heavy metals are elevated.

The second reason is that mercury can block the utilization of cysteine, and if cysteine rises too high, it can act as a neurotoxin. (This last is also the reason L-cysteine is not recommended as a supplement for building glutathione.) It's a good idea to measure the blood plasma level of cysteine periodically when building glutathione, to make sure it is not rising too high.

If elevated mercury is suspected, it is a good idea to test for mercury and detox it carefully if it is present, with the help of a doctor experienced in doing this. The best test is a collection of urine for 6 hours, preceded by a challenge with the chelator DMSA (succimer). A very small dosage of DMSA should be tried first, to make sure there is not an allergic reaction to it. A test of this type is offered as a Toxic Metals Panel by

http://www.doctorsdata.com.

If there is elevated mercury, it may also be wise to begin building glutathione using one of the approaches below, which put glutathione per se into the blood, rather than one of the oral approaches that help the liver to make glutathione. This may help to remove the mercury more "gently," starting with the kidneys, which absorb most of the glutathione put directly into the blood.

Oral supplements are probably the best way to raise the glutathione level in the liver, since the liver gets first access to oral supplements via the portal vein, and it is normally the main producer of glutathione in the body and an exporter of glutathione to the systemic blood and the bile. The liver is probably not able to take glutathione from the blood for its own use, so approaches that put glutathione per se into the blood probably are not very helpful in directly building glutathione in the liver.

2. Intramuscular injections, as pioneered by Dr. Patricia Salvato in Houston. She injects 100 mg of glutathione with 1 mg of ATP, intramuscularly, 2 times per week. One source of IM glutathione is McGuff Compounding Pharmacy in Santa Ana, CA (phone: (877) 444-1133, fax: (877)444-1155). This probably benefits most the muscle into which it is injected, but it is also reported to have systemic effects.

3. Intravenous injections, and particularly fast I.V. pushes, as advocated and used by Dr. Patricia Kane and her co-authors of The Detoxx Book (www.detoxxbook.com) as part of their overall detox protocol. The book says they do an I.V. push over 3 to 5 minutes starting with 1,500 mg of glutathione in 12 cc of sterile water for adults, and going as high as 2,500 mg in 15 cc of sterile water, one to two time per week for 3 to 6 months or more. They suggest Wellness Health and Pharmaceuticals in Birmingham, AL as the source for injectable reduced glutathione (phone: (800)227-2627, fax: (205)879-6551).

Intravenous glutathione injections seem to be becoming more prevalent. I think they were pioneered in the U.S. by Dr. David Perlmutter (after initial work in Italy by Dr. Secchi) for the treatment of Parkinson's disease, but they are being used in other disorders as well. Several cell types are able to extract glutathione from the blood, break it down, import the pieces, and resynthesize it inside the cell, via the gamma glutamyl cycle. Other types of cells can import glutathione intact from the blood. This approach requires a visit to a doctor's office, and it is relatively expensive to get these injections repeatedly.

(*From Sue Bailey: I've just learned of another source for IV glutathione fast pushes:www.Infuserveamerica.com/index.htm I think there are several good things about Infuserve America; They are cheaper. A pre-loaded syringe containing 2000 mg of glutathione is $12.50. (This is the wholesale price, and they explain on the website how they can sell it so cheap. ( 2.) A pre-loaded syringe is easier to use. With Wellness, I had to pay for and use four separate items--a 30 ml syringe, a disposable needle, a vial of glutathione and a vial of normal saline. Then I had to draw the two liquids into the syringe. Infuserve makes up a new batch of GSH every week).

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for any of you looking for chicken to try, I recommend considering Kosher chicken... Kosher meats are the only meats I eat that aren't organic as Kosher law prevents the usage of antibiotics and whatnot in the first place... my mom and my sister are Jewish and only eat Kosher meat (my sister's stricter about it as my mom will eat meat out at a restaurant)... I guess getting sick and eating healthier has brought me more in touch with my jewish side B)

the 2 brands I've eaten are Aarons and Empire chicken... I seem to react better to these chicken legs than the WF chicken I've eaten... I also prefer the Kosher lamb chops to the Wegmans organic lamb chops, and it's not even close though that probably depends on the butcher/store and where they get it from...

anyway, just an option to consider for those of you having trouble finding organic chicken/meats...

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Yeah...that actually happens to me too...but only if I overdo it. It doesnt really happen from the weather....only when I would go to the gym and spend like up to an hour in the sauna. I would come out for breaks but then get right back in. :rolleyes:

It was intense heat and then eventually I would feel my head pounding and there would be a ton of pressure...veins buldging out, etc.

Its the same thing that would happen when I'd get a very bad reaction to something like say MSG in processed food. If I went out to dinner I would always end up with these type reactions.

Now I'm thinking all that time in the sauna probably mobilized some mercury or other toxins and my immune system responded....cuz thats what it does....it reacts to everything....including the metals, candida toxins, etc. So my immune system was reacting to something after I let myself get overheated. <_<

It was in my thirties that I began to notice a relationship between heat and migraines and after ending up in emergency a few times I began to avoid it. That also ended my migraines that I had had since I was in my early twenties.

As I have said before it seems to me I have a lifetime of my system becoming ever more compromised until it finally tipped over into chronic illness. :(

I am so glad for this thread, it really encourages me to keep working on my health. :)

Encouraging news about the N.A.C., almost enough to make me want to try and find a doctor. :P:lol:

Murph, I am very sorry to hear about your brothers.

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Encouraging news about the N.A.C., almost enough to make me want to try and find a doctor. :P:lol:

NAC is a supplement, so you don't need a doctor for it. :)

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for any of you looking for chicken to try, I recommend considering Kosher chicken... Kosher meats are the only meats I eat that aren't organic as Kosher law prevents the usage of antibiotics and whatnot in the first place... my mom and my sister are Jewish and only eat Kosher meat (my sister's stricter about it as my mom will eat meat out at a restaurant)... I guess getting sick and eating healthier has brought me more in touch with my jewish side B)

Charlie.....actually the new chicken that I posted about is Kosher! :D I forgot to mention that. Its Kosher as well as organic. Wise Organic Pastures...Kosher chicken. B)

Its gooooood......even my mom commented on how good it looked and smelled.

She asked if I had cooked it differently this time. Nope...I did nothing different...its just not contaminated with mycotoxins from chickens which were obviously fed some rancid grains. :angry:

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ok I am confused about my c d 57 results Mine is 26- any opinions

rachel said most of what I would have said about the cd57 test... the paper I got from my LLMD about the test had this information:

"In my experience, those who do not have Lyme, or those who are cured of their infection, typically have counts above 180. However, in the chronic Lyme patient, CD57 counts are usually well below 60."

your number of 26 seems to indicate a pretty active infection... and it is low, but I've seen a number of people with chronic lyme report numbers in the teens and single digits... you can do a quick search on lymenet if you want to see some info on it...

as with most tests, it is not fullproof and certain LLMDs don't use the test... but in many cases, it seems to be a decent indicator of determining a patient's progress during treatment of lyme.. and the suppression of this CD57 subset of the natural killer cells has only been linked to borrelia and not any other potential co-infections...

After some months w/ digestive symptoms remaining I did a York Labs food panel of 116 foods. When it came back yeast I quickly (well maybe 6-8hrs online) became convinced it was candida. I started that diet and got a Naturopath appt the next day and have felt much better ever since.

The trouble now is mostly fatigue and a bad back, tho there can be occasional digestive issues and brain fog.

sorry about your brothers...

I also did a test for a broad spectrum of food intolerances (115 through Immunolabs) and the 2 yeasts, brewer's and baker's yeasts, came back as my 2 strongest reactions... after going on and off candida diets last year, I was on a very strict candida diet the first few months of this year along with taking a small amount of caprylic acid the first month or 2 and probably felt better than I have in a while... but I knew there was some other piece to the puzzle as I was still very sensitive and only improved in certain areas... ironically, my fatigue and energy issues improved a lot while my brain fog and cognitive issues didn't see much improvement...

I'm still on a pretty strict candida diet and will probably start taking a small amount of caprylic acid again soon once I feel comfortable adding something in with the ABX... from what I've seen on this forum, candida diets seem to improve symptoms to a respectable extent for a number of people with different issues... my mom was on a candida diet for 7 years when I was younger and she felt much better as a result of the diet... I could never understand how she only drank water and used to rag on her for taking her cooler everywhere... needless to say, I can't say much anymore :rolleyes:

It was in my thirties that I began to notice a relationship between heat and migraines and after ending up in emergency a few times I began to avoid it. That also ended my migraines that I had had since I was in my early twenties.

I don't know that I've ever noticed a specific link between headaches and heat, but I know heat exacerbates my symptoms... a number of times, I'll start feeling worse without knowing why and realize it's the heat, sometimes it's not even that hot but I just don't handle heat well anymore... unfortunately, it's a battle at work between a number of us over the temperature so I had to get a fan for my desk, which has been on just about every minute since I got it last year...

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Dear Carla,

Yep! I am proud of myself for not racheling the treats! :) I am cutting down on sugar. I am just going to do all of this a little at a time. Meanwhile, I am stressing over my appointment tomorrow. I hope that my doctor knows an LLMD or at least takes the Lyme seriously.

As far as painting goes, lately I mostly draw. I have not painted in a while. It can be frustrating. I miss doing other things. I study more than anything besides housework. Hopefully, I will get caught up in my studies so I can do more of other things.

I had a feeling you have had a flare. The herxes are cyclical. It was not time for them. As you said, you know your body. That is a good indicator that it was not a die-off reaction.

Dear Rinne,

I wonder why the fruit irritates our system more? Perhaps it has more sugar than the chocolate. That is the only thing I can figure. Of course, the magnesium may have something to do with it. That is my take on it.

Dear Donna,

The painting is really fun to do when you can do it! I love to recycle jars that way! I like to take tassels, make miniature floral arrangements and things and glue them on top! They are great Christmas gifts! You can also make your own ornaments that way! I will have to take a pic to show one of the matching jars I made for bracelets I made. I also do something really cool with Starbucks Frappaccino bottles!

Wow! You sure had a lot of scientificness on here! I may have to go back and copy that. Then I can paste it in a document. Saving it would probably be worthwhile. You never know when you may need this information again!

Dear Bev,

It sounds like stress irritated your system and brought your illness. That always seems to cause these things! Anytime someone dies or things are just going badly, that is when we get the symptoms of the illness. I had digestive issues from birth, but the other symptoms came on later. Some of this was after getting a virus.

The bacteria can lie dormant, then all of the sudden, it gets stirred up by something! Then we really have trouble! The heat does not help matters. I actually cannot tolerate a lot of cold, either. I cannot stand using even lukewarm water to wash my hands. It feels to cold!

Dear Susie,

Your dingos are going to be hosed, huh? That reminds me of our dog. Once, my brother had Tasha Bear in the trash barrel. He thought she would not be able to get out. She always tricked him! So, she wiggled around while he was attempting to get her with the hose, thinking she was pinned. The barrel tipped over, dumping all of that water on my brother, and the dog got loose! :lol: I was sitting in the kitchen and heard my brother scream and this big splash, and looked outside, and found him drenched, while Tasha happily trotted up the neighbor's yard! :lol:

Dear Murph,

I do not use soy sauce often, but on occaision do. I will be when I eat Chinese food. I am making some this week. I have not had any since like 8 months ago! I want it so bad! It is like my life blood!

The word thing is so fun! I really always pronounced heirarchy without the h. I never could stand for people to pronounce it the other way! It drives me nuts! I know it is silly to other people, but that is how I feel!

I am sorry to hear about your brothers. This disease is certainly difficult to deal with. Thank God I found out early. My mother probably has it, as well as a bunch of my relatives. They refuse to accept it. They will probably end up with Cancer or something because of it.

I understand the harsh feelings toward doctors. I am not fond of them myself. I honestly say I hate them with a passion. They really cannot be trusted. Most of them have no people skills, either.

Dear Mia,

You had a very low celiac disease-57 count. That indicates a very active Lyme infection. I am not surprised. You have been having such a rough time! I hope you begin to feel better soon!

Dear Laura,

Hello to you again! We wondered if you would drop in. I suppose you probably only have time for a quick post here and there. I have no idea how you manage to do so much! It truly is amazing!

Dear Rachel,

The glutathione is something I did not know much about. I have heard of it. So far, you are doing well on it. That is good to hear. Maybe you will begin feeling healthier soon! All of that scientificness is difficult to absorb! The mercury information is interesting as well. It is also scary!

Dear Patti,

It has been pretty warm here, too. I have been staying inside mostly. I go out to get a little sun. If it is too hot to sit out, I just prop myself over the back of the sofa in the living room. I get to look outside and since our house faces Southwest, the sun is right there. It works out well!

Dear Charlie,

Thank you for the Kosher information. I think Alison is Jewish like your mom and sister. She might know about the meat already, I do not know. I will be sure to mention it if I see her around on here! I am not Jewish, but think that it is a fascinating religion. Many of the traditions are really nice. It is good someone is keeping traditions alive!

We are also happy you and the other fellas joined the thread! Now we have you, Murph, and Grump! It is nice to have some guys in here. This is especially so if you have issues you need help with we might have information on. Rachelville is one big happy family!

Sincerely,

NoGluGirl

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Jin, you are right, a flare brought on by my cold. I was due to start a herx on Saturday. I don't know if my flare just turned into the herx so that I couldn't distinguish between the two or what, but I was feeling much better today.

Chat with you all tomorrow. It's late here ... but I had to stay up to take the rest of my meds. :blink:

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your number of 26 seems to indicate a pretty active infection... and it is low, but I've seen a number of people with chronic lyme report numbers in the teens and single digits... you can do a quick search on lymenet if you want to see some info on it...

I've actually seen a couple people on LymeNET with a CD57 of 0! :o

I've seen alot of single digits too.

My concern about this is that these results are more than a few months old...I think??

If I'm remembering correctly you got the CD57 sometime earlier this year right Miamia? I'm concerned if you are not actively treating this infection it will continue to get a stronger hold.

I know you are very concerned about candida and weight loss but those things are there because of the Lyme and possible co-infections. If your Dr. doesnt address those things first you'll be fighting an endless battle with the candida.

I would hate to see the Lyme progress even furthur without any treatment. :(

I would suspect co-infections for sure with all of your symptoms.

Did you have your appt. with the Dr. yet?? If not maybe you could discuss all of this with him.

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Dear Carla,

I am so glad you are feeling better. Hopefully, the worst is over. Maybe you will continue to improve. Those stupid viruses mess up everything! I had a stomach virus before going on those antibiotics, and I am sure that added to the trouble. I was feeling better for about a week, then after the Flagyl, it was all downhill from there. It was back to square one.

Dear Rachel,

That is scary about the celiac disease-57 results! People having counts in the single digits is very bad. Sometimes I wonder what mine is. How much does that test cost? I doubt we could afford it, but it is good to know in case I could do it later. The Western Blots are the focus right now. That is assuming my doctor is agreeable tomorrow and does not ignore the Lyme issue.

Sincerely,

Jin

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I wonder why the fruit irritates our system more? Perhaps it has more sugar than the chocolate. That is the only thing I can figure. Of course, the magnesium may have something to do with it. That is my take on it.

Jin.....fruit is LOADED with sugar and fungi/molds.

The riper the fruit...the more fungi/mold it contains.

When a fruit ripens....its actually fermenting....its basically rotting. Fungi and molds are always present in ripening fruit....yeasts are involved in the fermentation process.

Thee would be a higher content of fungi in ripe fruit than in chocolate. If someone has candida they would likely be very sensitive to molds and fungi in fruit. Fruit is not allowed on a candida diet.

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I've actually seen a couple people on LymeNET with a CD57 of 0! :o

I've seen alot of single digits too.

My concern about this is that these results are more than a few months old...I think??

If I'm remembering correctly you got the CD57 sometime earlier this year right Miamia? I'm concerned if you are not actively treating this infection it will continue to get a stronger hold.

I know you are very concerned about candida and weight loss but those things are there because of the Lyme and possible co-infections. If your Dr. doesnt address those things first you'll be fighting an endless battle with the candida.

I would hate to see the Lyme progress even furthur without any treatment. :(

I would suspect co-infections for sure with all of your symptoms.

Did you have your appt. with the Dr. yet?? If not maybe you could discuss all of this with him.

I forgot when I replied to your last post, but I saw you mention in that reply and this one that you think mia should see an LLMD and start treating the lyme... I had thought mia was one of us taking ABX for lyme... is it just me, carla, and laura?

as for this post, I agree... mia, a test result of 26 is not only way below what is typically described as normal (150-200+) but is also definitively out of the reference range (60-300)... I know you had the Igenex test done, so I assumed you were seeing an LLMD, but I guess another doctor just ordered this test and the CD57 for you?

I agree that you should go to some doctor adequately knowledgeable about the treatment of chronic lyme and try to start treating the lyme through some treatment method be it an herbal protocol or ABX (I'd assume ABX at least at first, but I'm not knowledgeable enough in this regard to really endorse this either way)... I've also focused on candida and not losing weight for a while and I don't think that me starting to treat the lyme the past 2 weeks with ABX has had any negative effect with the other factors... I take probiotics and still eat the same diet I was eating before starting ABX... though in my case, I think I had the candida in check to an extent before I started ABX...

with the score of 26, I think it would be best to discuss things with a doctor who is knowledgeable about lyme... if starting ABX would be a concern for you due to candida, you can discuss this and maybe starting on a smaller dosage may be better for you, who knows...

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That is scary about the celiac disease-57 results! People having counts in the single digits is very bad. Sometimes I wonder what mine is. How much does that test cost?

certain insurances cover the CD57 test... it's done through Labcorp so I think all Horizon insurances will cover the test... I don't know what the out of pocket cost would be..

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Dear Rachel,

I knew fruit was not allowed on the Candida diet at all for those reasons. It is just the canned fruit seems to irritate it more. I think it is the corn syrup. I eat corn and I am fine, but the syrup is too much sugar, and is very bad for the stomach. Many people do not tolerate HFCS.

It is difficult to digest. I would get pain going all the way up my side from it sometimes! I think it also has something to do with the fact sugar processing is slowed by the fat in the chocolate, so that is probably why the lactose in chocolate candy does not bother me. I cannot have yogurt or pudding, though. It makes me as ill as gluten.

I am working on removing one thing at a time. I do not want to shock my system into a severe herx. I do not need that!

Lyme is really my main pursuit right now, along with Babs. Wish me luck at the doctor's tomorrow! I am bringing in that article about it from LHJ.

Dear Charlie,

I appreciate the information on the testing for the celiac disease-57 count. I would have to pay out of pocket. I am not thrilled about that. I hate to think about it. The insurance is certainly an issue. I wish I had some.

Sincerely,

Jin

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I forgot when I replied to your last post, but I saw you mention in that reply and this one that you think mia should see an LLMD and start treating the lyme... I had thought mia was one of us taking ABX for lyme... is it just me, carla, and laura?

I believe Mia was on abx earlier in the year and had just gone off of them a month or so ago to give her body a break.

Mia, am I right?

Carla has mentioned mixing up abx to go after different forms of bacteria, I don't know if Mia's doctor has done that.

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I forgot when I replied to your last post, but I saw you mention in that reply and this one that you think mia should see an LLMD and start treating the lyme... I had thought mia was one of us taking ABX for lyme... is it just me, carla, and laura?

She did get on some antibiotics for a short time (I think shots?). As far as I know its just you Carla and Laura on ABX at this time.

I could be wrong but I dont think Miamia is on any specific Lyme treatment right now.

I could also be making a false assumption but I didnt think the Dr. was an LLMD. Miamia can correct me if I'm wrong about that.

She was actually the first one here tested through Igenix for Lyme...I think more than a year ago.....probably before the start of this thread or sometime around then. After I got tested she mentioned she had been tested but was negative. Many of us were interested in the results.....we were comparing positive bands and such. When she found her results she posted them ...sometime late last year. There were ALOT of positive bands.....the most we had seen thus far.

For some reason her Dr. didnt see significance in the results and alot of months had passed before she dug up the tests and posted them here. If not for that I guess she would still not know about the Lyme infection.

At the time I was angry the Dr. missed this....I know I expressed concern back then. I want her to get the best care....she's suffered alot and deserves to be in the best hands. Thats where the concern comes from in my posts. I care about Miamia alot....I've grown to care about everyone here and just want to see everyone on the road to recovery.

Sorry about talking about you in front of you Mia. :ph34r:

This is all stuff I've worried about in the past....and I still think if the Dr. is gonna order these tests...he should also be discussing the results with you so that you have a very clear picture of whats going on and what these tests mean.....rather than you going back and questioning him about them months later.

The infection is serious and alot of time has passed since you first got tested.....IMO some sort of treatment should have been started way back then....certainly by now he should have you feeling less in the dark...and on some kind of protocol to address the Lyme. The lyme is why you're feeling so bad....its running down your immune system....the candida situation only exsits because of everything else going on with you.

I know its not my place to say anything but I hate to see you going through so much and feeling confused alot of the time. I do feel that when there is that much confusion the Dr. is not giving his best effort to keep you informed and feeling confident in your treatment plan.....either that or he simply does not know how to proceed. I would hate to see your symptoms progress only because the Dr. is dragging his feet....you dont need that.

Looking at the whole picture....many positive bands on Western Blot, positive urine test (100% specific for Lyme), CD57 count 26, clinincal symptoms...there is really no doubt you need treatment....if he's not willing to treat then I would find a Dr. who will take this seriously....before the disease progresses.

Maybe he has a game plan...I hope he does...but if not I would seek better care. I know there must be some very knowledgable LLMD's in your area who will get you on the right track. It sucks because of the cost of treatment, etc...and I know this other Dr. is more affordable for you...but in the long run if your health is deteriorating...its probably not really worth it. :(

Sorry for butting in....yet again. :ph34r:

I wouldnt if I didnt care though. :wub:

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Maybe he has a game plan...I hope he does...but if not I would seek better care. I know there must be some very knowledgable LLMD's in your area who will get you on the right track. It sucks because of the cost of treatment, etc...and I know this other Dr. is more affordable for you...but in the long run if your health is deteriorating...its probably not really worth it. :(

Sorry for butting in....yet again. :ph34r:

I wouldnt if I didnt care though. :wub:

This has been my concern for Mia as well. I know if we were the ones dealing with chronic lyme we probably wouldn't be able to afford much in the way of treatment. It's like being between a rock and a hard spot. What's a person to do in that situation? :(

Mia, we do love you and are concerned about your health. :wub: :wub: :wub:

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Dear Rachel and Andrea,

I feel the same way. Mia is bound to have Lyme with all of these results! This is a serious and potentially fatal disease. I am concerned as well. I understand the financial issue all too well myself. :(

All of the tests she has had should tell the doctor something! You know, these are pretty good context clues! You know doctors, though. :rolleyes: How many doctors does it take to screw in a light bulb? Answer: None! They would have no idea where to put it! Then they would charge it for doing nothing! :lol:

Sincerely,

Jin

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mia

that stuff you use for constipation, is it good and do you use it everyday? What do you do or take for this problem

thanks

lisa

Lisa-

the stuff i had mentioned was oxypowder- I find it pretty effective. I don't do well with anything that has bulking agents, etc. It is the purest stuff i found to do the trick.

Miamia

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I would say that you have a pretty active case of Lyme Disease....you have the lowest cell count posted here so far.

Did your Dr. say anything to you about this?? He didnt explain what the results mean??

Basically its an indication of how well your immune system is dealing with Lyme. The lower the number the more difficult it is for your immune system to fight off the infection.

My CD57 was 78.....which means my immune system is keeping Lyme in check for now...its dealing with it. My LLMD is happy with this number but ultimately he would like to see my count above 100....probably closer to 150.

The CD57 goes up when the infection is under control by the immune system. If you feel better but still have a low CD57....the chances for relapse are high....it means that your immune system isnt ready to handle the infection on its own.

The only thing known to suppress the CD57 cells is Lyme Disease.

Heres some info about the test (from Scotts site)...

With everything that you've gone through and are still going through...I think it might really be important for you to see an LLMD...if at all possible. You're really going to need someone very knowledgeable to get you through this and to take the proper steps to get you well again.

Has your Dr. tested you for co-infections....heavy metals...or all the other stuff associated with Lyme? You're gonna have to get a good picture of whats going on so that you can start moving in the right direction with treatment. I'm assuming you're not on any Lyme treatment right now??

Rachel-

thank you so much for the info. I have an appt (I set it up yesturday) for a new doctor who specializes in heavy metal toxicity and he has a partner he works with who specializes in lyme, they will perform any testing I need and I will bring in all my old tests for them to look at. these are the main things that came out of my doctors appt. yesturday. The doctor sounds pretty good I pm'd andrea alittle more detail on him I can do the same for you- Did you get my last Pm I forgot there was something else I wanted to add to it. Iw ill have to do that later.

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I forgot when I replied to your last post, but I saw you mention in that reply and this one that you think mia should see an LLMD and start treating the lyme... I had thought mia was one of us taking ABX for lyme... is it just me, carla, and laura?

as for this post, I agree... mia, a test result of 26 is not only way below what is typically described as normal (150-200+) but is also definitively out of the reference range (60-300)... I know you had the Igenex test done, so I assumed you were seeing an LLMD, but I guess another doctor just ordered this test and the CD57 for you?

I agree that you should go to some doctor adequately knowledgeable about the treatment of chronic lyme and try to start treating the lyme through some treatment method be it an herbal protocol or ABX (I'd assume ABX at least at first, but I'm not knowledgeable enough in this regard to really endorse this either way)... I've also focused on candida and not losing weight for a while and I don't think that me starting to treat the lyme the past 2 weeks with ABX has had any negative effect with the other factors... I take probiotics and still eat the same diet I was eating before starting ABX... though in my case, I think I had the candida in check to an extent before I started ABX...

with the score of 26, I think it would be best to discuss things with a doctor who is knowledgeable about lyme... if starting ABX would be a concern for you due to candida, you can discuss this and maybe starting on a smaller dosage may be better for you, who knows...

Charlie-

thanks for your post. I was on ABX for a while-you were right. But I went off of it. I had a doc appt yesturday adn I ahve set up an appt with someone who specializes in lyme and mercury toxicity I agree that right now that is what I need to focus on. I think with so many health problems I soemtimes get overwhelmed and pulled in so many directions but right now this is what I am going to focus on.

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She did get on some antibiotics for a short time (I think shots?). As far as I know its just you Carla and Laura on ABX at this time.

I could be wrong but I dont think Miamia is on any specific Lyme treatment right now.

I could also be making a false assumption but I didnt think the Dr. was an LLMD. Miamia can correct me if I'm wrong about that.

She was actually the first one here tested through Igenix for Lyme...I think more than a year ago.....probably before the start of this thread or sometime around then. After I got tested she mentioned she had been tested but was negative. Many of us were interested in the results.....we were comparing positive bands and such. When she found her results she posted them ...sometime late last year. There were ALOT of positive bands.....the most we had seen thus far.

For some reason her Dr. didnt see significance in the results and alot of months had passed before she dug up the tests and posted them here. If not for that I guess she would still not know about the Lyme infection.

At the time I was angry the Dr. missed this....I know I expressed concern back then. I want her to get the best care....she's suffered alot and deserves to be in the best hands. Thats where the concern comes from in my posts. I care about Miamia alot....I've grown to care about everyone here and just want to see everyone on the road to recovery.

Sorry about talking about you in front of you Mia. :ph34r:

This is all stuff I've worried about in the past....and I still think if the Dr. is gonna order these tests...he should also be discussing the results with you so that you have a very clear picture of whats going on and what these tests mean.....rather than you going back and questioning him about them months later.

The infection is serious and alot of time has passed since you first got tested.....IMO some sort of treatment should have been started way back then....certainly by now he should have you feeling less in the dark...and on some kind of protocol to address the Lyme. The lyme is why you're feeling so bad....its running down your immune system....the candida situation only exsits because of everything else going on with you.

I know its not my place to say anything but I hate to see you going through so much and feeling confused alot of the time. I do feel that when there is that much confusion the Dr. is not giving his best effort to keep you informed and feeling confident in your treatment plan.....either that or he simply does not know how to proceed. I would hate to see your symptoms progress only because the Dr. is dragging his feet....you dont need that.

Looking at the whole picture....many positive bands on Western Blot, positive urine test (100% specific for Lyme), CD57 count 26, clinincal symptoms...there is really no doubt you need treatment....if he's not willing to treat then I would find a Dr. who will take this seriously....before the disease progresses.

Maybe he has a game plan...I hope he does...but if not I would seek better care. I know there must be some very knowledgable LLMD's in your area who will get you on the right track. It sucks because of the cost of treatment, etc...and I know this other Dr. is more affordable for you...but in the long run if your health is deteriorating...its probably not really worth it. :(

Sorry for butting in....yet again. :ph34r:

I wouldnt if I didnt care though. :wub:

Ok I keep premature posting so sorry if anything I says gets repetative. Rachel- I never think of you as butting in or anything like that I soooooo...... appreciate your opinion and advice- that goes for everyone here- It helps me to stay on track and push to get the right treatment. I am very angry at my doctor right now actually and very confused but I do feel good that I have this new appt. set up unfortunatly it is not until July 3rd I am going to call my docs office today though and see if he can do anything about moveing it up - I think he owes me that.

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This has been my concern for Mia as well. I know if we were the ones dealing with chronic lyme we probably wouldn't be able to afford much in the way of treatment. It's like being between a rock and a hard spot. What's a person to do in that situation? :(

Mia, we do love you and are concerned about your health. :wub: :wub: :wub:

ANdrea-

yes money is an issue but my health is my top priority. I will find a way to pay I just need to figure out the irght treatment. I would give up anything, borrow money, be in debt, anything!!!, if i could be healthy again!!!

I love you guys-- Thank you so much for your support, concern, and pushing me in the right direction.

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