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CarlaB

The Lyme Disease Thread

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Hi Scotty,

I'm not sure about the symptoms you are having. Just a couple of thoughts:

Abx can make you feel worse before you feel better. It took me 8 months on abx before I started to notice improvement. During that time, believe me we all questioned whether I should stick with the treatment. The fact that I seemed to clearly herx gave us hope.

Lyme tends to attack where a person is vulnerable. So it could be the areas of your body that are symptomatic are vulnerable.

I think the constipation sensation you are describing might be what I experience too, a shut down in the intestine. For me, starting the SCD has helped a lot. I am not able to digest carbohydrates well and this was causing a cascade of intestinal issues.

Sherry

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Castor, there is a lot of interest in energetic medicine in the treatment of lyme. I think some of the best LLMDs are very integrative in their approach to medicine.

Hope you find a route to treatment soon.

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he fact that I seemed to clearly herx gave us hope.

a shut down in the intestine. For me, starting the SCD has helped a lot. I

Sherry,

i have read that herx term before what is this exactly?

i think that describes it best my intestines are hsutting down nothing goes in (my bloodstream and to me) and nothing seems to come out. for me though i get terrible urges to urinate. all in all, i think it was turkey, which i could get away with every now and then when i was not taking abx, but now is a real disaster. which leads to me wonder what i should eat next. cuz i can't eat anything (i mean anything; whether it be carbs or veggies or most meat!!) without some consequences and i can feel a yeast overtaking beginning to happen. now the doctors office said to eat some yogurt everyday or Acidophilus, but 'dairy' makes me cramp; really does not help here. what else could i do to keep the yeast at bay.

whats SCD?

Scotty

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Herx is short for herxheimer reaction. Refers to a flu-like, detoxing response to certain bacteria when they die. Lyme spirochetes cause this. While it is typical to be flu-like, you can get a lot of other symptoms. The response tends to be cyclic while on antibiotics.

SCD is the specific carbohydrate diet. It eliminates carbohydrates that cannot be broken down when there are major gut problems. In my case, testing showed that I was eliminating high amounts of sugar in stool. This should be absorbed high in the intestine, so proved the lack of digestive enzyme. Doctor prescribed this diet which is really helping. (Eliminates grains, sugars, starches, dairy that still contains lactose; allows fruit and honey.) Also, you start with food very easy to digest and gradually add things. You make your own yogurt and you can use non-dairy options; this is an important part of the diet. The diet strives to kill off the bad bacteria and replace it with good. There is an active thread on the forum about the diet.

Magnesium is important. Lyme likes magnesium, so we end up with deficiency. Your intestine needs magnesium in order to contract. I have to take it orally to help with the intestinal motility; I also take injections of magnesium.

Sherry

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Castor,

Just wanted to say that I'm glad you found someone who is interested in healing. :)

Many of us who post here have "voodoo" doctors and I dont think that any of us would be willing to trade them in for a conventional one. ;)

In my opinion to beat chronic Lyme you need someone who is integrative and who thinks "outside the box" and this is where alot of the "voodoo" comes in. Frankly, I dont know where I'd be without it. Energetic testing has guided me through this process.....I would definately be much more in the dark if this had not been available to me.

The most significant findings have mostly been confirmed with traditional labwork. Without the results of energetic testing telling my doctors where to look...we might still be searching.

I have never had my blood looked at microscopically....but I know of others who have and its something I would love to do if the opportunity presented itself. My friend just had something similar done and could actually see his white blood cells eating the Lyme. Very COOL.

Thats great that you were not charged for the doctors services. Fortunately, I am not in a situation where I'm unable to afford treatments, testing, etc.....however, one of my previous doctors gave me a full hour of her time at no charge (which was totally unexpected). It only confirmed what I already knew about her....she truelly wants to make a difference in people's lives....she wants to give people back their health and this is more important than making money. Its nice that there are doctors out there who CARE...and I'm glad that you found one. :)

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Blech!

I started taking Flagyl this week and my tummy hurts! The doctor warned me this will happen, and I assume it will get worse as I increase the dosage. (I'm taking 250 mg tablets, starting with one and working up to six by the end of the week).

Any ideas on what I can do to help the nausea? If not, a little pity would be okay, too.

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Castor, you'll find the yogurt making info (for non-dairy versions) on www.pecanbread.com.

Also, you might look for a pure acidophilus for the starter. Most yogurts/probiotics contain some ingredients that my LLMD says are really hard to digest. (Inulin, FOS, chickory, etc). I bought mine from Kirkman. Once you get a batch done, you can use that for starter for quite a while, then when the quality drops, use a fresh capsule of the Kirkman to make a new batch.

You are having so much digestive distress that the SCD might be helpful to you. It is designed for that.

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Castor,

I had Darkfield Microscopy done on my blood as well by an ND.

Those little white dots floating around were probably yeast/candida and I too saw with my very own eyes parisites swimming around.

My ND called them 'blood parasites" but I know now they were lyme by all the pictures I compared.

My red blood cells were very clumped and sticking together.

Scotty,

Are you taking a probiotic at least 2x a day at least 2 hrs before or after abx? This is important. Also make sure your probiotic is dairy free if you have problems with dairy.

Also rule out prostititis sp? or BPH. Lyme loves the prostate. My Dad had to have his prostate taken out probably due to chronic untreated lyme.

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everyone,

thanks for the advisions....

i want to take a probiotic to help but i thought they all had dairy i mean aren't probiotics pretty mad from milk? i will have to try to find some dairy free ones

and i checked the site for the yogurt recipe and was a little overwhelmed here at first. i am not much of a cook, but i do follow directions well. dod i use goat's milk is that my understanding. i will have to take a better look.

does the magnesium help against this is that why you take it?

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Scotty,

Magnesium helps with constipation and keeping the intestine able to contract.

You can make yogurt with nut milks, coconut milk or even in veggies. Once you get the hang of it, it isn't that hard. It is also much cheaper than buying probiotics which can be expensive for good ones.

Yes, not all probiotics have dairy. You should be able to find a safe one.

I use goat milk, it seems many people tolerate it better than cow's milk. On the SCD it is suggested to people who don't handle milk to follow the diet for a month, then try introducing goat milk yogurt a tiny amount at a time (1/4 teaspoon) and gradually increase. Many people do tolerate this pretty well.

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you know i have looked at all these special diets and none really work for me since i can hardly digest anything. i have been through the elminations and narrowed myself down to certain things that are tolerable and i can make it through my days with. so thats what i am eating now. i wish i could get more of a variety in though. i am not sure what to eat at times. i just want something wihtout any consequences or suffering. i can only imagine what that must be like.

i had a 3 day urine test sent to igenex so i can't wait to see the results.

thanks for the replies too, i can hang in there now; and knowing i can leave the site for awhile then return with the world falling apart to only hear thats normal is really great to have

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Blech!

I started taking Flagyl this week and my tummy hurts! The doctor warned me this will happen, and I assume it will get worse as I increase the dosage. (I'm taking 250 mg tablets, starting with one and working up to six by the end of the week).

Any ideas on what I can do to help the nausea? If not, a little pity would be okay, too.

I couldn't tolerate Flagyl. Uhuh, no way. I felt so sick, nausea, diarrhea, body aches and chills. I tolerated cipro better than flagy. I don' t think Rachel tolerated it either. I stopped taking mine after five days.

They gave it to me for BV, but that's due to the lyme. It didn't work. Didn't clear up the infection.

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None of the diets are working for me either, I'm just not digesting anything, and now with my colon and everything so messed up, I'm becoming alergic to anything I eat regularly, so.... I have no idea what I can even eat now. I feel horrible no matter what I do.

The reality is sinking in about this. I've known something was seriously wrong for several months now. There were all the signs my body was falling apart. I've lost 55 pounds now, and it's not stopping. My hair has been falling out for about a month, I bruise like a ripe fruit. Where I had an IV recently stayed black and blue for over two weeks. Then there was just how I felt and the convultions.... I've known I was....

There were the clusters of Lyme in my blood, looking of pictures I realize that's what that was, I didn't know when I was looking at it... The guy seemed very concerned but I could tell didn't want to show it or even pointed out the clusters and seemed to move over them quickly.

For 8 years I've been trying to tell people there was something seriously wrong, but nobody ever took me seriously and just told me to see a therapist.

Now with how Lyme has been turned into a taboo in the medical feild because of money and profits, I don't think I am going to be able to get any real treatment, I haven't been able to work much the last 3 years so I have nothing, and nobody in my family does either. The reality is sinking in that I might not get better and I could very well.. .. ..

I wish I still had friends, This last year has been so lonely, but I have trouble talking with people and it just never goes well. This isn't exactly how I saw my life going.

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Castor can you post a list of the foods that you can eat? Maybe we can make some suggestions based on that.

Yes, lyme is incredibly debilitating. Sounds like you are taking some steps though, way to go!

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sherry,

could you tell me how long you been on the SCD diet and how long you been treating the Lyme and how long have you been sick.

for the most part i wonder sometimes since my problems have been around so long how much of a chance i stand. you know what kind of irreversible damage has been done. alot of folks i have come across have all of a sudden starting getting sick so to speak; but i have been there my whole life.

somebody has to get this out. i mean really out there......if one of us meets Obama please ask him what his plan for Lyme patients is; that would have been my question on one of them debates. this should recognized sooner, treated before it mutates

thanks

Scotty

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Scotty, I have just been on SCD since July '08. Lyme I have had a long time. I think I got it in about '82-'83, at least then I had a tick bite and my neuro/pain symptoms started after that, and allergy symptoms went crazy. Ameoba infection was found too.

Finally got diagnosed with lyme in 2000. I have been treating for 8 years, and overall am much better just can't get off antibiotics with relapsing.

My guess is that celiac disease has undermined treatment, that was diagnosed in 2007, my gut is still in the healing process.

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Interesting blog entry about gluten here in this lyme blog:

http://lymemd.blogspot.com/ nov.4

(link found on Lymenet)

Note also the discussion on lyme being chronic and almot asymptomatic until something else happens, often antibiotics..........then think back, what are antibiotics? Yes, they are mold.

Then, in a reply to antohter post, again this comment on unknown bacteriae: "I wont be surprised if the DNA fingerprint of these bacteria are not in the catalogue."

I keep reading abut that.

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Sorry, I've been out of town and not getting on the internet.

Tommy, how's the flagyl going now? I never took it so I don't have suggestions. :(

Castor, hang in there, try to find some way to get treatment. Alternative docs can be good in this battle.

Welcome back, Scotty. :)

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I've been feeling REALLY bad the past couple of days (about 3 weeks into my abx). My stomach hurts, I'm exhausted, my mouth is dry, skin is itching and my appetite is really strong.

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I have a question for those of you who've been on longterm antibiotics.

I'm about 6 weeks into my antibiotics, and I caught a cold that's going around. Usually when I get a cold, I get rid of it pretty quickly -- a day or two usually. This one has hung on for at least a week and shows no sign of getting better.

So I'm wondering if this is just a virus that hangs on a long time, or whether taking all those antibiotics may be affecting my immune system and making it harder to shake the cold.

Thanks!

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The Lyme could be affecting your immune system.

My kids and I got the cold going around and so did a lady I know at Church. It lasted well over two weeks for all of us. It was the longest cold I think I've ever had! So, it could also be that.

Hope you feel better soon!

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It's been a while, so I thought I'd give an update.

After about 3-4 months on the antibiotics, I started feeling MUCH better. Since then, I've been pretty stable -- not feeling better, but not feeling worse. But overall, I'd say I'm feeling better now than I have in 10 years. I've also noticed that my allergies, which usually start up in April have been very, very mild. I also dropped about 15 pounds without trying.

I'm currently taking Doxy, Flagyl and Ceftin. I'm seeing my doctor at the end of the month, and she said she'll be changing the abx at that point. Also, last time I saw my doctor, I remembered to ask "How long will I be taking all these antibiotics?" and she said "Two years." I've been reading about how most doctors stop the abx treatement too soon, so I was actually relieved. She said she keeps people on the abx until they are symptom-free, and then an additional 6 months to make sure the lyme doesn't come back.

So, I'm far from 'cured', but I'm cautiously optimistic about the future!

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