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grbnbpb
Sun, Jun-10-07, 11:21
Well; ... Friday I sent off for the beginning of my lyme & babesia (another tick-borne disease) medications! After reviewing some of the intensive side effects of mepron, I decided that requesting prayer was in order. I realize this is not a "religious" forum, but other low-carb folks will understand my situation best, and I know I will need super-natural help here.

When I took 6 days of flagyl in February, in order to avoid up-chucking my medication I NEEDED toast before each pill. Now I will be starting probably 6mos medication; beginning with mepron (which ~25% need to drop or limit because of side effects), then ADDING 7 other strong antibiotics, as I can tolerate their added side effects. I don't want to drop from a maintenance low-carb program, but I NEED to get these medications to stay in my system (& not in the up-chuck bucket).

I have gradually upped my carbs to 70g now, and my thought is that maybe I can spend those carbs on the needed toast each morning and evening; the contest is whether I can limit myself to only that small amount of something that I enjoy soooo much!

Nancy LC
Sun, Jun-10-07, 12:28
Why toast? I find it hard to believe there's something in toast that you can't find in some other food to keep you from tossing your cookies.

Good luck with your meds, sounds awful. But I'd encourage you to try to find something else to eat with them.

Citruskiss
Sun, Jun-10-07, 12:39
Flagyl's horrible - I turned up allergic to it (not apparent till I took a second round of it months later for a dental infection), but remember the first time I took it for a stomach bug - not fun side effects.

Peppermint tea helps quite a bit with nausea and upset tummies. Get some - try it before you load up on all the new antibiotics and see if it helps.

As for toast - I'm betting there might be some recipes on these forums for LC toasts/crackers that you could make. Like flax or whatever. I haven't yet looked for something like this because I'm not ready to add that much carb yet to my diet, but you with your 70grams a day might be able to fit this in nicely without having to resort to highly-refined bread products.

Another thing I found rather useful for nausea (minor altitude sickness after returning to Colorado from sea-level Vancouver) - was Pellegrino water. Dunno why it worked so well, but it did. Kind of like the ginger-ale effect without the sugar (or even ginger) it seemed.

Go have a look through the recipe forums and see if you can find a LC bread product that you could make for yourself. I'm sure I've seen people mentioning things like homemade flax bread and so on...

If I see anything like that, I'll be sure to pop back in here and post a link.

Take care, and I really hope you feel better soon.

Citruskiss
Sun, Jun-10-07, 12:42
Just took a quick peek into the "Breads and Baked Goods" recipe forum, and am already seeing all kinds of possibilities:

http://forum.lowcarber.org/forumdisplay.php?f=123

Have a good look through there and see if you can find things that might work for you, and if any of it can be frozen for later use - not sure you'll want to be baking all the time if you're dealing with all sorts of medicine and side effects.

Citruskiss
Sun, Jun-10-07, 12:45
And here's some actual LC bread someone's making with a bread machine:

http://forum.lowcarber.org/showthread.php?t=326655

grbnbpb
Sun, Jun-10-07, 12:51
With flagyl twice a day for 6days, I didn't find ANYTHING that worked other than toast or crackers. Additionally, I need to have the lowest iron content possible, with the highest fat content possible. Several of the medicines only bind to the same neuro-receptors as iron, so anything taken within 4hrs of the medicine needs to be VERY low iron content, and they are fat-soluble so need highest fat content possible. From my quick perusal, that means white bread.

One recommendation was avocado for fat availability, but it doesn't keep from needing a bucket, same with nuts. Those are fine for meds that don't create intensive nausea, but I know with flagyl the bucket was needed at almost exactly 15min, unless a bread product was in my stomach. (I tried pork rinds & I think they would have worked except their smell turned my stomach.)

CitrusKiss: You posted while I was composing. Thanks for the reminder about ginger; I had heard about that and forgotten. I tried peppermint tea last time and it didn't help. Flax is way too high in iron, otherwise my flax crackers would work wonderfully, I think. I'm lookin' ... thanks for the suggestions.

Citruskiss
Sun, Jun-10-07, 13:01
Hmm...you have my attention with the iron thing. Just out of curiosity, could you clarify for me what you mean about needing a very low-iron content food with your medicine? Are you saying that the medicine won't 'take' if you've eaten something with a lot of iron?

Long story short - I had to reduce my iron consumption (totally unrelated to what we're talking about here), and in the process I learned a few things about iron:

1.- avoid multi-vitamins with iron in them
2. - vitamin C increases the absorption of iron (not many people realize this)
3. - calcium inhibits the absorption of iron
4. - black tea inhibits the absorption of iron
5. - the high-iron in spinach is not the highly absorbable kind (ie. it's non-heme iron, unlike the heme iron found in red meat)
6. - most refined carbohydrates (including that white bread) are made with iron-enriched flour
7. - things like shrimp are very high in iron, perhaps even moreso than red meat

Still not sure what you're getting at with needing low-iron in conjunction with your meds, but I do know that when I was reducing my own iron consumption, drinking black tea with my meals seemed to make a difference, as did calcium supplements. I dropped the multi with the iron in it, and stopped taking so much vitamin C.

PS - on edit - maybe not for your pre-med food snack, but you have me thinking along the lines of homemade chicken/ginger soup....that could be good.

grbnbpb
Sun, Jun-10-07, 13:03
Nancy, I am remembering your bowl muffins. Could I make an almond-based bowl muffin that would stay together without egg (2much iron) & would create the absorbency needed without iron? If so, maybe I could put it under the broiler for the crisp-ness that I think was a factor in holding the nausea at bay. I've got the almond meal, & haven't even tried it on anything yet because my calories needed to be so low.

grbnbpb
Sun, Jun-10-07, 13:09
Hmm...you have my attention with the iron thing. Just out of curiosity, could you clarify for me what you mean about needing a very low-iron content food with your medicine? Are you saying that the medicine won't 'take' if you've eaten something with a lot of iron?

Basically, yes. The iron neuro-receptors must be empty (but hungry?) in order for the medicine to work; otherwise the chemicals go thru the system without any effect.

THANK YOU so much for the helpful info; if vitamin C increases the absorption of iron, then it would probably also increase the absorption of the chemical in my meds, and calcium & black tea would probably interfere with that absorption also. Very important info!

grbnbpb
Sun, Jun-10-07, 14:09
Maybe I should clarify what neuro-receptors are:

In cell biology, the receptor is a structure on the surface of a cell (or inside a cell) that selectively receives and binds a specific substance. There are many receptors.

To take an example, there is substance P, a molecule that acts as a messenger for the sensation of pain (those of us with FMS/CFS have an over-abundance of substance P). The receptor for substance P is a unique harbor on the cell surface where substance P docks. Without this receptor, substance P cannot dock and cannot deliver its message of pain.

Putting it very simplistically: In my case, there is a receptor for chemicals that include those similar to iron; where these chemicals dock and deliver. If iron has filled that receptor, other chemicals that are similar are not able to deliver their cargo. Among those chemicals similar to iron are at least one of my medications.

For a more technical definition see http://www.answers.com/topic/receptor .

Nancy LC
Sun, Jun-10-07, 14:26
Nancy, I am remembering your bowl muffins. Could I make an almond-based bowl muffin that would stay together without egg (2much iron) & would create the absorbency needed without iron? If so, maybe I could put it under the broiler for the crisp-ness that I think was a factor in holding the nausea at bay. I've got the almond meal, & haven't even tried it on anything yet because my calories needed to be so low.
Can you have either the yolk or white? I doubt it'll stick together if you don't have egg. You might try using a gum like xantham or agar but the egg protein is what really binds it together. It'd probably end up like porridge, which might not be bad!

alliebridg
Mon, Jul-23-07, 11:39
When I took Mepron my doctor told me I must take it with fat--a fatty meal or something--in order for it to absorb properly. So, if you just take it with toast, it probably won't absorb well and you won't be getting its benefits.

I can't speak for Flagyl because I've never taken it. I'm on an herbal regimen for Lyme now (Samento, Cumanda, and many others, detox herbs). If the antibiotics are too harsh for you, maybe your doc can switch you to herbs. Just a thought.

Good luck!

grbnbpb
Tue, Jul-24-07, 07:52
Allie,
I guess the manufacturer's original recommendation was for over 20g. fat with each dose (but there was too much of a fuss so they rephrased the requirements).

I take the toast with flagyl, doxy, and the herbals of artemisinin and Grapefruit Seed Extract (both flagyl and doxy, even individually, make me vomit within the hour so I take 1slice raisin bread with them). Then, two hours later I take mepron and zithromax with hamburger gravy in am, & whatever else hi-fat I can find in pm. The low carber database has been very valuable for summing those meal's fat so that I can make sure I get over 20g. on each dosage.

As you can guess, after no food for 2hrs before the nausea from flagyl and doxy, then no food for 2hrs before the mepron, my hypoglymia is in high gear long before I take the mepron, and any fat at all is questionable.

Also, the nausea from mepron seems to affect me much differently than that of flagyl and doxy; it isn't as extreme but it lasts for a LONG time. Additionally, most meats make me even more nauseous. Fruits and vegetables seem to settle best. Surprisingly, even the smell of my old mainstay, home-made eggnog, turns my stomach.

When did you take mepron and what were the results?

alliebridg
Wed, Jul-25-07, 09:30
I forgot about that. I could NOT eat meat, hamburger, etc. while on antibiotics. It definitely made me feel nauseated.

My doc recommended an alkaline diet. So this basically means limiting meat products. I ate my protein in the form of whey protein powder (in shakes) and upped the salads and veggies.

I didn't take 20g of fat with the Mepron. I didn't know that that much was required. I would just eat something fatty--some guacamole, or a protein shake with coconut oil and cream in it. I found that taking the antibiotics with a shake really did help to coat my stomach and I wouln't get nauseated.

I was on Mepron for about three months last fall until I got a stomach bug--intestinal distress--so my Lyme doc switched me to herbals. I was on three other antibiotics at the same time as Mepron--biaxin/plaquenil combination, as well as Ceftin. They really did help.

So now, my doc is concentrating on detoxing me from the antibiotics as well as getting rid of whatever residual Lyme (and babesia) bacteria may be left, using herbs.


Additionally, most meats make me even more nauseous. Fruits and vegetables seem to settle best.

grbnbpb
Wed, Jul-25-07, 10:20
Thank you; it's so great to talk with someone low-carb & also with tick-borne complications!

My Dr is questioning whether I actually have lyme/babesia since in three weeks I haven't seen any positive changes in my symptoms. Additionally, he says the worsening of my peripheral neuropathy could be just more medication side effects, and not herx at all. He told me that if there are no symptom improvements before my next appointment (at 7wks from beginning treatment) then he will be suggesting I drop the meds.

Consequently, I am looking for some perspective in the symptom improvement timeline of others; is it reasonable to EXPECT symptom improvement within 7 wks? What did you experience?

alliebridg
Thu, Jul-26-07, 10:59
Your doctor doesn't sound Lyme literate to me. Why would he expect improvement so soon? My PCP did the same thing to me. I started getting major twitching from doxycline and she thought it was a reaction to the medication. So I got in to see a Lyme literate doc as soon as I could (3 months later) who told me it was a herx (as I had suspected). He couldn't believe that she took me off of the antibiotics. Oh, well!

My timeline:

Diagnosed February '06. Was on doxycycline (low dose) prescribed by my PCP, February '06, for 5 weeks or so. It increased my brain fog and fatigue, herxing (twitching/shaking in right arm and shoulder--like Parkinson's). No improvements.

First visit to lyme literate doctor July '06. He put me on higher dose doxy, then switched to biaxin/plaquenil. My symptoms got worse.

He added Ceftin. This almost immediately cleared the brain fog (for me, it doesn't for everyone). I added Mepron on October 1st and started having a few good days, where I felt nearly normal. But I still had chronic fatigue and needed to drink coffee to function "normally".

Now I'm at a point on herbs where I do have some good days as well. Still drinking coffee (one large mugful in the morning), though. And I frequently need naps. The herbs I am on are basically for detoxing at this point (Cowden Protocol). The bacteria level is low. I just need to get rid of the residual junk in my cells from the onslaught of antibiotics.

Still have chronic fatigue, headaches, sometimes joint and muscle aches, too. But this time I know it's from the herbs working and not from the Lyme disease running rampant. So it's a better kind of pain (if that makes any sense at all).

It's truly a long haul. It's been nearly a year and a half for me at this point.


Thank you; it's so great to talk with someone low-carb & also with tick-borne complications!

My Dr is questioning whether I actually have lyme/babesia since in three weeks I haven't seen any positive changes in my symptoms. Additionally, he says the worsening of my peripheral neuropathy could be just more medication side effects, and not herx at all. He told me that if there are no symptom improvements before my next appointment (at 7wks from beginning treatment) then he will be suggesting I drop the meds.

Consequently, I am looking for some perspective in the symptom improvement timeline of others; is it reasonable to EXPECT symptom improvement within 7 wks? What did you experience?

grbnbpb
Fri, Jul-27-07, 12:14
Guess what? Today is my first good day on treatment ! :cool: I am SOOOO excited; tinnitus is low, no headache, low nausea, & my energy is UP!

alliebridg
Sat, Jul-28-07, 08:13
Congratulations on your good day! Such great news! :)

Which meds are helping most for you?

Have you checked out the Lymenet forum? I've found it chock full of information and encouragement.

I wish you well and much luck with your recovery from this horrible disease!


Guess what? Today is my first good day on treatment ! :cool: I am SOOOO excited; tinnitus is low, no headache, low nausea, & my energy is UP!

grbnbpb
Sat, Jul-28-07, 09:10
I am on California Lyme at
http://health.groups.yahoo.com/group/CaliforniaLyme/

It's hard to know which meds are helping the most because I am on so many; I'm taking the herbals of artemisinin and Grapefruit Seed Extract, and prescriptions for flagyl, doxy, mepron and zithromax. I remember that I need the doxy so that mepron doesn't become resistant, but I don't remember about the others.

Fitmamajen
Mon, Aug-06-07, 10:34
ooops double post

Fitmamajen
Mon, Aug-06-07, 10:36
Hi. I have Lyme disease. I discovered it after I started having arthritis feelings in my joints (mainly hands) and extreme fatigue at age 26 last year. I tried abx for 6 months and quit and then I got better and better. My dr did not want me to quit abx, but from my research and experience, once you catch Lyme as late as I did (months or years later) then the odds are that abx will not work.

I went to a naturopath/homeopathic doctor and she expalined that I started feeling so bad on abx because of imflammamtion. By taking out my allergy foods, fixing my nutrient defiencies, supporting my adrenals, staying on a really clean diet, and just generally taking care of myself I a, generally symtpom-free.I really only have a problem if I get really run down or eat dairy/eggs/gluten. She said there are probably many people walking around with Lyme and they never can tell. I reacted so badly because my immune system was run down from stress and nutrient defiencies (many worsened by when I was a very low fat strict vegetarian). I also take high vitamin cod liver oil which I think helps a lot.

This same dr helped treat a woman with very chronic Lyme. She had been on all sorts of meds and was in a wheelchair....she put her on a low-imflammation diet (meat, vegs, nuts, fats ect), enzymes, nutrient supps, and a liver detox and she was walking within 90 days.

Honestly with what I know now I would have never taken abx for Lyme. I know that will not be a very popular opinion but if you want more info feel free to pm me.

I hope that you are feeling great soon no matter what path you choose :)

Jen

alliebridg
Tue, Aug-07-07, 10:37
No, no, no!!! What you were experiencing was a herx (herxheimer reaction on the antibiotics)! This means that when you're feeling worse, you're actually getting better!

I had Lyme disease for 10 years before it was discovered and the antibiotics helped immensely. I am on an herbal protocol now but it was the antibiotics that truly got me to the level I'm at.

The reaction could have been in part to inflammation, it's true. When we have a bacteria load as high as we do, with Lyme, our bodies are bound to react to it, with inflammation.

It doesn't sound like you had a lyme literate doctor. Diet and detox is definitely PART of the solution. The thing is, with Lyme this could make you feel better TEMPORARILY but without medicine (be it herbal antibiotics or the harsh ones), you will never be cured permanently.

My LLMD has me taking cod liver oil and coconut oil to combat the inflammation, and a low glycemic diet such as these on the board here, in conjunction with the herbal antibiotics and herbal detox herbs. I cannot imagine just doing the diet/detox.

I am scared for you!!! Please find a Lyme Literate MD in your area!!!

Hi. I have Lyme disease. I discovered it after I started having arthritis feelings in my joints (mainly hands) and extreme fatigue at age 26 last year. I tried abx for 6 months and quit and then I got better and better. My dr did not want me to quit abx, but from my research and experience, once you catch Lyme as late as I did (months or years later) then the odds are that abx will not work.

I went to a naturopath/homeopathic doctor and she expalined that I started feeling so bad on abx because of imflammamtion. By taking out my allergy foods, fixing my nutrient defiencies, supporting my adrenals, staying on a really clean diet, and just generally taking care of myself I a, generally symtpom-free.I really only have a problem if I get really run down or eat dairy/eggs/gluten. She said there are probably many people walking around with Lyme and they never can tell. I reacted so badly because my immune system was run down from stress and nutrient defiencies (many worsened by when I was a very low fat strict vegetarian). I also take high vitamin cod liver oil which I think helps a lot.

This same dr helped treat a woman with very chronic Lyme. She had been on all sorts of meds and was in a wheelchair....she put her on a low-imflammation diet (meat, vegs, nuts, fats ect), enzymes, nutrient supps, and a liver detox and she was walking within 90 days.

Honestly with what I know now I would have never taken abx for Lyme. I know that will not be a very popular opinion but if you want more info feel free to pm me.

I hope that you are feeling great soon no matter what path you choose :)

Jen

Fitmamajen
Thu, Aug-09-07, 07:41
My dr did want me to stay on abx. I did take them for 6 months and I decided that the abx had done as much as they could and to keep going would be detrimental at he point I had gotten to. I did not want to live my life that way constantly on medications and experinecing their side effects with littel proof that it would "cure" me.

I am 27 and wanted to have more children and I was on abx that could cause birth defects. I just wanted to move on with my life and so I decided to really boost my immune system instead. I read and heard so many stories of people taking abx for years without ever really improving. If someone told me that it was totally curable with abx in X amount of time I would have been more open to continuing. But you never know if you have killed it all off and I don't beleive you can ever be totally Lyme free when you catch it late. So, with all that and by faith I decided to try another route and it is working for me.

alliebridg
Fri, Aug-10-07, 06:46
Have you felt better since being off of the antibiotics? Which antibiotics were you on which cause birth defects? I agree that you shouldn't be on something like that. But at the same time, the Lyme bacteria can cause birth defects as well...so 6 of one, half dozen of the other.

I hold on to the hope that it can be cured totally. Then and only then, will I have a baby. We have to make sure that there is absolutely no Lyme bacteria left in our systems before getting pregnant, as the Lyme bacteria can be passed onto the baby.

My Lyme was indeed left undiagnosed for a long time (10 years), and now, after about one year on antibiotics, the bacteria level is reallly low in my body. I am on herbal antibiotics to take care of the rest, and also on the herbal detox. So I am very hopeful! :)

Good luck!

My dr did want me to stay on abx. I did take them for 6 months and I decided that the abx had done as much as they could and to keep going would be detrimental at he point I had gotten to. I did not want to live my life that way constantly on medications and experinecing their side effects with littel proof that it would "cure" me.

I am 27 and wanted to have more children and I was on abx that could cause birth defects. I just wanted to move on with my life and so I decided to really boost my immune system instead. I read and heard so many stories of people taking abx for years without ever really improving. If someone told me that it was totally curable with abx in X amount of time I would have been more open to continuing. But you never know if you have killed it all off and I don't beleive you can ever be totally Lyme free when you catch it late. So, with all that and by faith I decided to try another route and it is working for me.

Fitmamajen
Mon, Aug-13-07, 10:30
I had read on some websites that Lyme could cause birth defects. I decided to go to the research journals myself. (These from the pub med data base) Here are some examples:

Lyme disease in pregnancy: case report and review of the literature.http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17176487&ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Maternal Lyme disease and congenital heart disease: A case-control study in an endemic area.
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=10076152&ordinalpos=20&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Lyme disease during pregnancy.
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=9067786&ordinalpos=31&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Lyme disease and pregnancy outcome: a prospective study of two thousand prenatal patients.http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=8362948&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus This one has some split info. I wish they gave the numbers for the increased risk group but I cannot access the entire article.

Fetal outcome in murine Lyme disease.
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=7806385&ordinalpos=37&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

There is a lot of scary info to sort out there, but much research shows no association between birth defects and materal Lyme. When I researched Lyme myself my husband and I have felt comfortable in the decisions we have made. It seems there are problems with the babies when the mother contracts Lyme while pregnant and does not get treatment. (Like the researchers conclude in "Fetal outcome of murine Lyme disease")

Have you felt better since being off of the antibiotics? Which antibiotics were you on which cause birth defects? I agree that you shouldn't be on something like that. I was on ceftin, cirpro and omnicef..maybe I tried other, but I can't remember the name. I just keep feeling better and better now as long as I live right (avoid mt allergy foods ect). I very rarely feel like I have Lyme--I will have a little pain in my knuckles for a few hours and then it will disappear. My dr was a lyme literate MD and was very much for long term abx, but also supported me in my decision to quit in March. He said he even had a woman take a food allergy blood test and when she avoided all those foods she felt normal and never took abx for Lyme even though she tested postive for that too.

Anyway, I am glad that you are satisfied with your protocol and wish you a fast recovery.

Jen