Aa
What's Happening Now?
Hi All!
Haven't been here for awhile. I've been feeling great! Haven't had pain for a few months, so haven't needed to take anything for pain. Even the cooler temps wasn't bothering me. Don't remember the last time I felt so good....and almost normal.
Now that winter is here (which has always been my worst time of the season), symptoms are coming back. Brain fog & dizziness are setting in good. Aches in shoulders, arms & tendons are coming back. Night sweats started last night....along with a few other symptoms. Concentration is difficult again. Not understanding what people are saying, is embarrassing to me again.
I'm still taking Flagyl (which I love! Haven't slept so good in years), Cipro & Macrobid (Nitrofur). When I switched from Levaquin to Cipro, I began feeling much better, which has continued for a few months, until last week.
This is the month the largest bullseye rash always came out (covered the back of my thigh). I usually had one show up, 4 times/yr. I would get quite ill, with chills, fever and all the symptoms I mentioned above. This is the first time the rash hasn't come out, in 18 years. Have not come down with a cold and feel fine, that way. Also, no pain (yet) from shoulders down to feet.
My question is this: Is it possible these symptoms will go away again, when the weather warms up again, or have the meds stopped working now? Yes, I know I need to see an LLMD and will do that in the near future....so close to that task now. Just need to stay comfortable for 1 more month, if possible.
Thanks, in advance, for any replies to this post.
Haven't been here for awhile. I've been feeling great! Haven't had pain for a few months, so haven't needed to take anything for pain. Even the cooler temps wasn't bothering me. Don't remember the last time I felt so good....and almost normal.
Now that winter is here (which has always been my worst time of the season), symptoms are coming back. Brain fog & dizziness are setting in good. Aches in shoulders, arms & tendons are coming back. Night sweats started last night....along with a few other symptoms. Concentration is difficult again. Not understanding what people are saying, is embarrassing to me again.
I'm still taking Flagyl (which I love! Haven't slept so good in years), Cipro & Macrobid (Nitrofur). When I switched from Levaquin to Cipro, I began feeling much better, which has continued for a few months, until last week.
This is the month the largest bullseye rash always came out (covered the back of my thigh). I usually had one show up, 4 times/yr. I would get quite ill, with chills, fever and all the symptoms I mentioned above. This is the first time the rash hasn't come out, in 18 years. Have not come down with a cold and feel fine, that way. Also, no pain (yet) from shoulders down to feet.
My question is this: Is it possible these symptoms will go away again, when the weather warms up again, or have the meds stopped working now? Yes, I know I need to see an LLMD and will do that in the near future....so close to that task now. Just need to stay comfortable for 1 more month, if possible.
Thanks, in advance, for any replies to this post.
Yes, please....would like the name of your LLMD. Infact, I would like the name of any LLMD's near central Ca. I do have a list of LLMD's in our state. However, there aren't any near central Ca. Most are in coastal areas....whether it be north or south. Traveling might be a problem for me, but will get that worked out, when I'm finally able to go to one. I'm getting so close to that now. Hoping by the end of January to make an appointment with one of them.....if no more emergencies crop up on me again.
I started checking out gluten-free recipes yesterday. Will check into that part more now.
I have no pain in my stomach now, but have had awful pain, this year. However, the meds (antibiotics) took away the pain. Infact, I haven't needed Zantac for a few months, until 2 or 3 weeks ago. Back on that one now, too.
Pain in shoulders & arms is gone today. The meds, I take for that pain, is working. Had a terrible headache for 2 days. That's gone, too. Only thing left now, is the fog, & dizziness. Trying what Jackie said and changing my diet. Will check out the gluten-free tomorrow.
I sure appreciate the help you've all given me. I'm so glad I've met you all here. I have hope now....where I had none before. Knowing what to expect helps so much. If you all made it through all the meds, I can too.
I started checking out gluten-free recipes yesterday. Will check into that part more now.
I have no pain in my stomach now, but have had awful pain, this year. However, the meds (antibiotics) took away the pain. Infact, I haven't needed Zantac for a few months, until 2 or 3 weeks ago. Back on that one now, too.
Pain in shoulders & arms is gone today. The meds, I take for that pain, is working. Had a terrible headache for 2 days. That's gone, too. Only thing left now, is the fog, & dizziness. Trying what Jackie said and changing my diet. Will check out the gluten-free tomorrow.
I sure appreciate the help you've all given me. I'm so glad I've met you all here. I have hope now....where I had none before. Knowing what to expect helps so much. If you all made it through all the meds, I can too.
It sounds like you've gotten some great suggestions from Jackie. As I was reading through the thread, I was thinking many of the same things. Mold and yeast can also interfere with Lyme treatment and can cause brain fog, fatigue, GI problems, and other symptoms. I was also wondering about intolerance to dairy. Many people are lactose intolerant, but there are other proteins in cow's dairy products that some people cannot break down.
Regarding diet, I don't know if you have mentioned it already, but many Lyme patients with GI issues feel better when they go gluten free. I tried it just for the heck of it, and I was surprised when 5-6 days later, I felt more mentally clear and noticed a reduction in stomach pain. 13 months later, I am starting to eat small amounts of gluten and not feeling any effects. In October I started a new supplement called IgG 2000 DF and it sure helped my gut to heal. I haven't had any yeast triggered bloating since the second week I was on it. I even have noticeably less yeast on my tongue.
A good LLMD will consider everything in your history. The really good ones have a 60-90 minute initial appointment as most Lyme patients have a lot of history to talk about. They also know to look for ancillary problems that sometimes show up as side effects of Lyme, such as h.pylori, the bacteria that causes stomach ulcers, parasites,
Don't fear Babesia treatment. I did feel crummy when I started meds for it and it took a couple weeks to acclimate to the medicine, but my breathing is definitely getting better than it had been in nearly two years. Believe me, it is worth the treatment! Today was the first day of no daytime sweats in two months since I started Babs meds! :)
What I wish I had done differently was ease into the recommended dose. The PA didn't mention that and I paid the price with a big herx the next day (brain fog and fatigue). I backed off from 3 pills down to one, then added them back in as I leveled off. Then I got a second Rx. For two weeks, I just took it twice a day. Now I am ready to go up to the prescribed three times a day.
Do you have an LLMD lined up? If you'd like a recommendation, mine is in NorCal and uses supplements extensively with prescriptions. I can send you a private message if you'd like his name.
Regarding diet, I don't know if you have mentioned it already, but many Lyme patients with GI issues feel better when they go gluten free. I tried it just for the heck of it, and I was surprised when 5-6 days later, I felt more mentally clear and noticed a reduction in stomach pain. 13 months later, I am starting to eat small amounts of gluten and not feeling any effects. In October I started a new supplement called IgG 2000 DF and it sure helped my gut to heal. I haven't had any yeast triggered bloating since the second week I was on it. I even have noticeably less yeast on my tongue.
A good LLMD will consider everything in your history. The really good ones have a 60-90 minute initial appointment as most Lyme patients have a lot of history to talk about. They also know to look for ancillary problems that sometimes show up as side effects of Lyme, such as h.pylori, the bacteria that causes stomach ulcers, parasites,
Don't fear Babesia treatment. I did feel crummy when I started meds for it and it took a couple weeks to acclimate to the medicine, but my breathing is definitely getting better than it had been in nearly two years. Believe me, it is worth the treatment! Today was the first day of no daytime sweats in two months since I started Babs meds! :)
What I wish I had done differently was ease into the recommended dose. The PA didn't mention that and I paid the price with a big herx the next day (brain fog and fatigue). I backed off from 3 pills down to one, then added them back in as I leveled off. Then I got a second Rx. For two weeks, I just took it twice a day. Now I am ready to go up to the prescribed three times a day.
Do you have an LLMD lined up? If you'd like a recommendation, mine is in NorCal and uses supplements extensively with prescriptions. I can send you a private message if you'd like his name.
Will see what this diet change will do, for now. If it doesn't help, I'll see my doctor again soon. Going without 1 little cookie, after dinner, will be the most difficult for me....~sigh~
Stayed home from work today. Didn't think it was safe to drive...too dizzy & fogged. Hard to concentrate. Will go to work tomorrow...no matter how I feel. Can't keep taking off work, because of what I'm going through. Besides, the last one lasted 6 weeks (I think). I didn't stay home that time, either....except for 1 day. Just 2 more days of work, then I'll be on vacation....starting Jan 1st. Will have plenty of time to work on this problem.
Stayed home from work today. Didn't think it was safe to drive...too dizzy & fogged. Hard to concentrate. Will go to work tomorrow...no matter how I feel. Can't keep taking off work, because of what I'm going through. Besides, the last one lasted 6 weeks (I think). I didn't stay home that time, either....except for 1 day. Just 2 more days of work, then I'll be on vacation....starting Jan 1st. Will have plenty of time to work on this problem.
Sounds good -- don't be shy about asking your doc to test and treat for a systemic fungal (yeast) infection. My Lyme doc said he had *never* seen anyone get the infection I did, and mine seemed to be directly due to the yeast-based probiotic he insists on along with the antibiotics. So I think docs just aren't accustomed to thinking of systemic yeast infections and instead assume it is only a 'feminine' thing.
Diflucan (as tablets/pills) is the standard treatment for systemic yeast infection, and I had no problems taking it ... just felt kind of flu-like for a few days while the die-off was going on, but not bad at all. Just a thought!
Hope you feel better soon -- keep us posted! J.
Diflucan (as tablets/pills) is the standard treatment for systemic yeast infection, and I had no problems taking it ... just felt kind of flu-like for a few days while the die-off was going on, but not bad at all. Just a thought!
Hope you feel better soon -- keep us posted! J.
Well, your list helps a lot....thank you.
Most on the list of "don'ts" I don't eat. However I do use Ketchup, on rare occasions. I always buy frozen veggies & most have mushrooms...~sigh~. Will make sure to take out all mushrooms now. I only drink Martinelli's Apple Juice...grown & mfg'd here, in California (near Monterey). I don't drink any other juices. Won't be a problem to stop using any of these items.
I rarely eat cheese....maybe once or twice/year. Won't be a problem to stop buying it.
Only bread I eat is 100% Whole Wheat, so will check that out...and see what the health food store has to offer. I never buy French bread...nor sour dough bread. Guess I've done OK with the food part, so far....with the exception of the few on your list that I have eaten recently. Will change my diet now & see if I improve. I will keep you posted.
I'm due to take my probiotic tomorrow. Will see if it helps. I usually feel great, for a few days, after taking it.
Most on the list of "don'ts" I don't eat. However I do use Ketchup, on rare occasions. I always buy frozen veggies & most have mushrooms...~sigh~. Will make sure to take out all mushrooms now. I only drink Martinelli's Apple Juice...grown & mfg'd here, in California (near Monterey). I don't drink any other juices. Won't be a problem to stop using any of these items.
I rarely eat cheese....maybe once or twice/year. Won't be a problem to stop buying it.
Only bread I eat is 100% Whole Wheat, so will check that out...and see what the health food store has to offer. I never buy French bread...nor sour dough bread. Guess I've done OK with the food part, so far....with the exception of the few on your list that I have eaten recently. Will change my diet now & see if I improve. I will keep you posted.
I'm due to take my probiotic tomorrow. Will see if it helps. I usually feel great, for a few days, after taking it.
this is part of what is posted at
www [dot] mold-survivor [dot] com / dietcopyright [dot] html
--------------------------------------------------------------------------------------------
"The Mold Help Diet
"This is an adapted diet from Dr. Vincent Marinkovich
"Symptoms of mold hypersensitivity can be worsened by eating foods, such as cheeses, that are processed with fungi. Other foods like mushrooms, which have gills that attract viruses, fungi, and other invaders, dried fruits, and foods containing yeast, soy sauce; which obtains its unique flavor from Aspergillus, or vinegar can also produce allergic symptoms.
"Avoid these foods if you suspect any mold allergies, or have suffered from prolonged exposure to toxigenic molds, and have yourself checked for leaky gut syndrome by a knowledgeable physician. ...
"... Foods to Avoid!
"- NO dried fruit; raisons, apricots, prunes, figs, etc.
"- NO aged cheese of any kind - Some cheeses are acceptable if milk is tolerable, e.g., cottage cheese, mozzarella, provolone, ricotta and farmer's cheese.
"- NO mushrooms or fungi whatsoever, such as truffles, even avoid sprouts.
"- NO Leftovers- Eat within 24 hours, unless frozen (microwave frozen food to thaw quickly)
"- NO Breads. Malted means moldy. Dough conditioners are moldy. Sourdough or sourdough starter is the worst. (Sometimes labeled yeast-free) Bread develops surface mold within a day. Some tortillas, biscuits, muffins, cakes and cookies are usually yeast free, yet high in sugar content. You can buy sprouted bread with no yeast (Not sourdough) at the health food store.
"- NO Sauerkraut. It has been fermented.
"- NO Tomato Products; Juice, sauce, paste, ketchup, etc., are made from moldy tomatoes.
"- NO Beer - The darker the beer, the more mold it contains.
"- NO Wine & Wine Vinegar - White wine is least moldy; clear vinegar may be tolerated.
"- NO liquor - Vodka, tequila, clear rums are least moldy.
"- Be careful of multi-B Vitamins - Many contain either yeast or mold (Rice hulls are moldy). Some are alright. Check with manufacturer. See note below on Aspergillus fermentation process.
"- NO cider or fruit juice (juice contains mold as it is made with old fruit).
"- NO Pickled and smoked meats and fish, including processed delicatessen foods, sausages, salami, bologna, frankfurters, corned beef and pickled tongue.
"- NO eggs
"- NO melons, except watermelon if very fresh and eaten same day."
------------------------------------------------------------------------------------
I don't know if I would agree with all those, but you might try adhering to the diet till your symptoms lift, then introduce one of the 'no no' foods and see if you react badly, as you seem to have done with the jack cheese just recently.
What is important is not someone else's list, but how YOU feel. If eating jack cheese makes you feel poorly, then it means you are reacting to it, and you may have re-seeded your system with things that your immune system cannot handle.
An LLMD may, depending on their other interests, not be attuned to food sensitivities, so you may need to work this out on your own or under the guidance of a dietitian or allergist who understands food and mold allergies.
Some years ago, I read a book called 'The Yeast Connection' which put forth the view that some of us are sensitive to or allergic to yeast, which is ... a mold-type organism. It was written by a Dr Crook (ha!) and made good sense to me. You could look around online and see if you can find mention of his ideas. So-called mainstream medicine doesn't really pay attention to diet and allergies, and much of what we eat is so processed and additive-ized and messed with that it's not really a surprise that our immune systems react. And mind you, I'm no conspiracy theorist kind of person, but it made a big difference when I cleaned up my diet after reading the Yeast Connection book ... I had been on a lot of antibiotics, which mess with the immune system, and just couldn't seem to get really well after a long bout with tonsillitis that led to surgery and more antibiotics.
That's why good Lyme docs know that re-seeding the system with 'good bacteria' [like probiotics] after wiping out ALL bacteria with antibiotics is a good idea ... what my Lyme doc didn't consider however was that he was reseeding my system with *fungus-based* probiotics (Florastor brand; generic name Saccharomyces boulardii). The doc said he had never seen anyone react to Florastor the way it colonized on me, but I suspect no one had reacted as badly as I did, tho others may have been struggling with it and just thought it was part of Lyme.
Your doc can give you antifungal medications orally, like a baby gets for a thrush infection. I just searched online for -- treatment for thrush -- (thrush being a candida yeast infection) and there were lots of useful links to home remedies, which may make you feel worse at first but within a few days after the yeast die-off is done, you should start to feel better. You have to police your diet carefully tho, because the yeast are begging for sweets and yeasty foods!
This is not as hard as it sounds, and for me it was WELL worth the effort. After a time, you can add back fruits and so on without a problem, AFTER the yeast is all dead. That's why antifungal medication can be helpful (such as Diflucan, by prescription), to speed up the treatment. Some people are just more susceptible to yeast than others ... it's just the way their immune system is made up. Some docs don't believe it or take it seriously, but that's no reason to stop trying.
Sorry to rattle on here. Just wanted to give a full response. Take care, let us know how you do! Your head CAN clear up again! Just kick the yeast!
Food cravings are very much a part of food sensitivities and systemic fungal infections. So you might try stopping the jack cheese entirely, knowing that you will feel lousy for a few days, but may well feel a good bit better within a week, as the fungus die off is over with. Stay away from sugars in food and drinks ... just plain food with low low low sugar content. Sounds boring, but for me it was well worth it.
Just a thought!
www [dot] mold-survivor [dot] com / dietcopyright [dot] html
--------------------------------------------------------------------------------------------
"The Mold Help Diet
"This is an adapted diet from Dr. Vincent Marinkovich
"Symptoms of mold hypersensitivity can be worsened by eating foods, such as cheeses, that are processed with fungi. Other foods like mushrooms, which have gills that attract viruses, fungi, and other invaders, dried fruits, and foods containing yeast, soy sauce; which obtains its unique flavor from Aspergillus, or vinegar can also produce allergic symptoms.
"Avoid these foods if you suspect any mold allergies, or have suffered from prolonged exposure to toxigenic molds, and have yourself checked for leaky gut syndrome by a knowledgeable physician. ...
"... Foods to Avoid!
"- NO dried fruit; raisons, apricots, prunes, figs, etc.
"- NO aged cheese of any kind - Some cheeses are acceptable if milk is tolerable, e.g., cottage cheese, mozzarella, provolone, ricotta and farmer's cheese.
"- NO mushrooms or fungi whatsoever, such as truffles, even avoid sprouts.
"- NO Leftovers- Eat within 24 hours, unless frozen (microwave frozen food to thaw quickly)
"- NO Breads. Malted means moldy. Dough conditioners are moldy. Sourdough or sourdough starter is the worst. (Sometimes labeled yeast-free) Bread develops surface mold within a day. Some tortillas, biscuits, muffins, cakes and cookies are usually yeast free, yet high in sugar content. You can buy sprouted bread with no yeast (Not sourdough) at the health food store.
"- NO Sauerkraut. It has been fermented.
"- NO Tomato Products; Juice, sauce, paste, ketchup, etc., are made from moldy tomatoes.
"- NO Beer - The darker the beer, the more mold it contains.
"- NO Wine & Wine Vinegar - White wine is least moldy; clear vinegar may be tolerated.
"- NO liquor - Vodka, tequila, clear rums are least moldy.
"- Be careful of multi-B Vitamins - Many contain either yeast or mold (Rice hulls are moldy). Some are alright. Check with manufacturer. See note below on Aspergillus fermentation process.
"- NO cider or fruit juice (juice contains mold as it is made with old fruit).
"- NO Pickled and smoked meats and fish, including processed delicatessen foods, sausages, salami, bologna, frankfurters, corned beef and pickled tongue.
"- NO eggs
"- NO melons, except watermelon if very fresh and eaten same day."
------------------------------------------------------------------------------------
I don't know if I would agree with all those, but you might try adhering to the diet till your symptoms lift, then introduce one of the 'no no' foods and see if you react badly, as you seem to have done with the jack cheese just recently.
What is important is not someone else's list, but how YOU feel. If eating jack cheese makes you feel poorly, then it means you are reacting to it, and you may have re-seeded your system with things that your immune system cannot handle.
An LLMD may, depending on their other interests, not be attuned to food sensitivities, so you may need to work this out on your own or under the guidance of a dietitian or allergist who understands food and mold allergies.
Some years ago, I read a book called 'The Yeast Connection' which put forth the view that some of us are sensitive to or allergic to yeast, which is ... a mold-type organism. It was written by a Dr Crook (ha!) and made good sense to me. You could look around online and see if you can find mention of his ideas. So-called mainstream medicine doesn't really pay attention to diet and allergies, and much of what we eat is so processed and additive-ized and messed with that it's not really a surprise that our immune systems react. And mind you, I'm no conspiracy theorist kind of person, but it made a big difference when I cleaned up my diet after reading the Yeast Connection book ... I had been on a lot of antibiotics, which mess with the immune system, and just couldn't seem to get really well after a long bout with tonsillitis that led to surgery and more antibiotics.
That's why good Lyme docs know that re-seeding the system with 'good bacteria' [like probiotics] after wiping out ALL bacteria with antibiotics is a good idea ... what my Lyme doc didn't consider however was that he was reseeding my system with *fungus-based* probiotics (Florastor brand; generic name Saccharomyces boulardii). The doc said he had never seen anyone react to Florastor the way it colonized on me, but I suspect no one had reacted as badly as I did, tho others may have been struggling with it and just thought it was part of Lyme.
Your doc can give you antifungal medications orally, like a baby gets for a thrush infection. I just searched online for -- treatment for thrush -- (thrush being a candida yeast infection) and there were lots of useful links to home remedies, which may make you feel worse at first but within a few days after the yeast die-off is done, you should start to feel better. You have to police your diet carefully tho, because the yeast are begging for sweets and yeasty foods!
This is not as hard as it sounds, and for me it was WELL worth the effort. After a time, you can add back fruits and so on without a problem, AFTER the yeast is all dead. That's why antifungal medication can be helpful (such as Diflucan, by prescription), to speed up the treatment. Some people are just more susceptible to yeast than others ... it's just the way their immune system is made up. Some docs don't believe it or take it seriously, but that's no reason to stop trying.
Sorry to rattle on here. Just wanted to give a full response. Take care, let us know how you do! Your head CAN clear up again! Just kick the yeast!
Food cravings are very much a part of food sensitivities and systemic fungal infections. So you might try stopping the jack cheese entirely, knowing that you will feel lousy for a few days, but may well feel a good bit better within a week, as the fungus die off is over with. Stay away from sugars in food and drinks ... just plain food with low low low sugar content. Sounds boring, but for me it was well worth it.
Just a thought!
I'm so disappointed because my head had cleared up so much. I was finally able to think everything out clearly. Don't remember the last time I could do that. Now, it seems I'm back where I've been, the past few years. I'm anxious to find a good LLMD now, in hopes he/she can determine which co-infections I have and start treating them properly. I only hope I don't have problems from any meds given. I'm so sensitive to most meds and don't want to take off work because they make me ill.
Thought babs effected the brain. Wondering now...do both barts & babs effect the brain? I feel something moving around in there....and have for the past 18 years. I've told doctors, family & friends about this. Have had brain scans for it and nothing was found.
Thought babs effected the brain. Wondering now...do both barts & babs effect the brain? I feel something moving around in there....and have for the past 18 years. I've told doctors, family & friends about this. Have had brain scans for it and nothing was found.
I don't eat dairy products, nor drink milk. Don't have a problem with any of them....just don't like the weight gain they cause. I like eggs, but rarely buy them.
However, I did get a craving for Jack Cheese, a couple weeks ago. Ate cheese & crackers 2 days in a row. This fog started on the 3rd day and has continued to get worse, since then. Same thing happened, the first time I came down with this fog....ate some Jack Cheese. Cheese has been out of my system for a couple of weeks now. Don't know why this fog is continuing. Wondering if the cheese could has stirred something up....along with the cold temps outside?
I eat plenty of veggies, so yes, I do get all the vitamins, calcium & mag from them. I like all veggies, so I eat quite a variety of them....and plenty of green veggies. I don't take vitamins, supplements, nor herbs (except spices for food...usually garlic).
Never too much data from you. I learn new things & helps me so much....thank you.
However, I did get a craving for Jack Cheese, a couple weeks ago. Ate cheese & crackers 2 days in a row. This fog started on the 3rd day and has continued to get worse, since then. Same thing happened, the first time I came down with this fog....ate some Jack Cheese. Cheese has been out of my system for a couple of weeks now. Don't know why this fog is continuing. Wondering if the cheese could has stirred something up....along with the cold temps outside?
I eat plenty of veggies, so yes, I do get all the vitamins, calcium & mag from them. I like all veggies, so I eat quite a variety of them....and plenty of green veggies. I don't take vitamins, supplements, nor herbs (except spices for food...usually garlic).
Never too much data from you. I learn new things & helps me so much....thank you.
... and PS re milk. There are lactose-free or lactose-reduced milk products on the market now, so you can get the calcium still without the problems caused by regular milk.
I have Lyme, Bart's and Babs. My Babs was more difficult due to the medication. Adverse reactions.Some people tolerate it better than others.
My Babs seems to have been cured much faster then my Bart's which for me, is worse then even the Lyme. It is still there and in my brain.
It affects everyone differently. I wish you only the best!
My Babs seems to have been cured much faster then my Bart's which for me, is worse then even the Lyme. It is still there and in my brain.
It affects everyone differently. I wish you only the best!
Here's another thought: maybe you are not tolerating the Aleve as well as you think?
When NSAIDs [=non-steroidal anti-inflammatory drugs] like Aleve (which is just a brand name for one company's NSAID] first came out about ten+ (?) years ago, my doc suggested it to me since aspirin is really hard on my stomach and gut, so I could only take Tylenol, and sometimes Tylenol wasn't strong enough (mainly for menstrual cramps, which I were killer for me -- I ended up having to take tylenol with codeine, and needed it only 1-2 days a month, but my gynecologist told me that I was her last patient taking the codeine because the Feds were pressuring docs not to prescribe it to anyone. Around that time I went into menopause, so it wasn't an issue anymore, but who exactly do the Feds think they are???).
Well, I was allergic to the NSAIDs, and my doc said I should never take them again. That was about 10-15 years ago, and I don't now remember what the specific symptoms were, but they did upset my gut, and I think I got hives too. There are a lot of docs who think NSAIDs are harmless, but not in everyone. You might want to read up online about contraindications. Here is some language I just copied from an Aleve website:
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"Aleve may also cause serious effects on the stomach or intestines, including bleeding or perforation (forming of a hole). These conditions can be fatal and can occur without warning while you are taking Aleve, especially in older adults.
"Call your doctor at once if you have symptoms of stomach bleeding such as black, bloody, or tarry stools, or coughing up blood or vomit that looks like coffee grounds.
"Ask a doctor or pharmacist before using any cold, allergy, or pain medication. Many medicines available over the counter contain aspirin or other medicines similar to Aleve (such as ibuprofen or ketoprofen). Taking certain products together can cause you to get too much of this type of medication. Check the label to see if a medicine contains naproxen, aspirin, ibuprofen, or ketoprofen. Avoid drinking alcohol. It may increase your risk of stomach bleeding."
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I also can't take aspirin, because it irritates my stomach really badly. Just sayin' .... you could have that reaction, like I do.
And one more possibility: you could be sensitive to dairy products as well. Some people don't have the necessary enzymes to digest dairy products, and in some population groups (such as American Indians and some Asians, and even some Europeans), dairy just causes gut problems constantly. The American obsession with drinking lots and LOTS of milk doesn't work for everyone, because of a genetic inability to digest the milk protein. I always had this problem, and only realized in recent years that stories of there being Indian blood in my family is probably true, now that I've been digging around the family tree. I'm not the only one in my family who always got a stomach ache after drinking milk ... but I had it worse than most of the others who did. So the genes show up stronger in some people than others. However, it's again something that mainstream medicine docs just don't think about. (When American Indians were, a 100 years or so ago, urged to adopt a Western European diet including milk, the babies and adults didn't thrive, and eventually some people realized there were digestive problems.)
So there's a long bunch of possible reasons for the symptoms you are having. You might want to look at your diet AND supplements AND meds overall and explore the possibilities. I always hated that huge glass of milk I was expected to drink at dinner, and the carton of milk I was expected to drink in the cafeteria at lunch, and it turns out there was a reason why!!!
And one more thought: if you are taking the supplement called Cal-Mag (or the generic equivalent; read the labels), I have read that the ingredients are not well tolerated by a fair number of people because the calcium is not the most digestible kind (and I've seen people say that it's just junky ingredients, but I don't know). I don't take it myself.
Western medicine believes -- because Western medicine was developed largely by descendants of Western European herders, who have the genes to easily digest milk proteins -- that milk and milk products are necessary to good health, but for those it makes ill, there are other ways to get calcium for bones and teeth. You generally don't see 'milk' on a Chinese restaurant menu, do ya? Greens are a good source of calcium, for example.
Your doc may TOTALLY disagree with all of this, but it could be that he has just never been exposed to other populations who don't handle these ingredients.
Sorry to dump all this data on you, but once I started typing it, I figured I might as well unload the whole truckload for your consideration. Do talk with your doc, if you think this might apply, and see what reaction you get. He may or may not agree, but you should get his input.
With best wishes to your gut, and to you! You need not eliminate ALL of these things at once, but you might try experimenting, and do talk with your doc. If he's not receptive, you might see another doc or a dietitian, but I don't know how open-minded dietitians are .... There are lots of other ways to get calcium ... rice and beans provide a 'complete protein.' Fish and eggs are also good sources. That's how country folk like my ancestors and cousins were sure to get their calcium equivalent -- and I do, too.
As to whether your LLMD would pay attention to your history or not, if he doesn't, then he's a turkey imo. -- J.
When NSAIDs [=non-steroidal anti-inflammatory drugs] like Aleve (which is just a brand name for one company's NSAID] first came out about ten+ (?) years ago, my doc suggested it to me since aspirin is really hard on my stomach and gut, so I could only take Tylenol, and sometimes Tylenol wasn't strong enough (mainly for menstrual cramps, which I were killer for me -- I ended up having to take tylenol with codeine, and needed it only 1-2 days a month, but my gynecologist told me that I was her last patient taking the codeine because the Feds were pressuring docs not to prescribe it to anyone. Around that time I went into menopause, so it wasn't an issue anymore, but who exactly do the Feds think they are???).
Well, I was allergic to the NSAIDs, and my doc said I should never take them again. That was about 10-15 years ago, and I don't now remember what the specific symptoms were, but they did upset my gut, and I think I got hives too. There are a lot of docs who think NSAIDs are harmless, but not in everyone. You might want to read up online about contraindications. Here is some language I just copied from an Aleve website:
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"Aleve may also cause serious effects on the stomach or intestines, including bleeding or perforation (forming of a hole). These conditions can be fatal and can occur without warning while you are taking Aleve, especially in older adults.
"Call your doctor at once if you have symptoms of stomach bleeding such as black, bloody, or tarry stools, or coughing up blood or vomit that looks like coffee grounds.
"Ask a doctor or pharmacist before using any cold, allergy, or pain medication. Many medicines available over the counter contain aspirin or other medicines similar to Aleve (such as ibuprofen or ketoprofen). Taking certain products together can cause you to get too much of this type of medication. Check the label to see if a medicine contains naproxen, aspirin, ibuprofen, or ketoprofen. Avoid drinking alcohol. It may increase your risk of stomach bleeding."
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I also can't take aspirin, because it irritates my stomach really badly. Just sayin' .... you could have that reaction, like I do.
And one more possibility: you could be sensitive to dairy products as well. Some people don't have the necessary enzymes to digest dairy products, and in some population groups (such as American Indians and some Asians, and even some Europeans), dairy just causes gut problems constantly. The American obsession with drinking lots and LOTS of milk doesn't work for everyone, because of a genetic inability to digest the milk protein. I always had this problem, and only realized in recent years that stories of there being Indian blood in my family is probably true, now that I've been digging around the family tree. I'm not the only one in my family who always got a stomach ache after drinking milk ... but I had it worse than most of the others who did. So the genes show up stronger in some people than others. However, it's again something that mainstream medicine docs just don't think about. (When American Indians were, a 100 years or so ago, urged to adopt a Western European diet including milk, the babies and adults didn't thrive, and eventually some people realized there were digestive problems.)
So there's a long bunch of possible reasons for the symptoms you are having. You might want to look at your diet AND supplements AND meds overall and explore the possibilities. I always hated that huge glass of milk I was expected to drink at dinner, and the carton of milk I was expected to drink in the cafeteria at lunch, and it turns out there was a reason why!!!
And one more thought: if you are taking the supplement called Cal-Mag (or the generic equivalent; read the labels), I have read that the ingredients are not well tolerated by a fair number of people because the calcium is not the most digestible kind (and I've seen people say that it's just junky ingredients, but I don't know). I don't take it myself.
Western medicine believes -- because Western medicine was developed largely by descendants of Western European herders, who have the genes to easily digest milk proteins -- that milk and milk products are necessary to good health, but for those it makes ill, there are other ways to get calcium for bones and teeth. You generally don't see 'milk' on a Chinese restaurant menu, do ya? Greens are a good source of calcium, for example.
Your doc may TOTALLY disagree with all of this, but it could be that he has just never been exposed to other populations who don't handle these ingredients.
Sorry to dump all this data on you, but once I started typing it, I figured I might as well unload the whole truckload for your consideration. Do talk with your doc, if you think this might apply, and see what reaction you get. He may or may not agree, but you should get his input.
With best wishes to your gut, and to you! You need not eliminate ALL of these things at once, but you might try experimenting, and do talk with your doc. If he's not receptive, you might see another doc or a dietitian, but I don't know how open-minded dietitians are .... There are lots of other ways to get calcium ... rice and beans provide a 'complete protein.' Fish and eggs are also good sources. That's how country folk like my ancestors and cousins were sure to get their calcium equivalent -- and I do, too.
As to whether your LLMD would pay attention to your history or not, if he doesn't, then he's a turkey imo. -- J.
Well, if you made it through the babesia treatment, I can too. Not going to be concerned now. Thanks for the explanation. I understand a lot more about it now.
I'm taking acidophilus because I, too, am sensitive to yeast. My doctor didn't want me to take a yeast based one & thought I might do best on this one. Also, it is veg based calcium & magnesium. Not being able to take either of those, he thought I'd be able to tolerate the probiotic I'm taking now. I even tried yogurt and can't do that one, either. Caused severe pain.
My doctor does know about the problems with the probiotic. That's why he told to me continue it, but try to cut it back to 2 pills a week. He said any amount I can take will be good. I have been taking them a few hours before taking my first daily antibiotic.
I worry a bit about an LLMD. I have so many problelms with meds. My regular doctor knows what meds & doses I can take. Wondering if an LLMD would pay attention to my history, or not?
I'm taking acidophilus because I, too, am sensitive to yeast. My doctor didn't want me to take a yeast based one & thought I might do best on this one. Also, it is veg based calcium & magnesium. Not being able to take either of those, he thought I'd be able to tolerate the probiotic I'm taking now. I even tried yogurt and can't do that one, either. Caused severe pain.
My doctor does know about the problems with the probiotic. That's why he told to me continue it, but try to cut it back to 2 pills a week. He said any amount I can take will be good. I have been taking them a few hours before taking my first daily antibiotic.
I worry a bit about an LLMD. I have so many problelms with meds. My regular doctor knows what meds & doses I can take. Wondering if an LLMD would pay attention to my history, or not?
I had Lyme and babesia at the same time, and once the babesia was treated, I felt 70% better. It's a very straightforward treatment, unlike Lyme, which can be trickier to treat because it can hide where the meds have a hard time reaching it. Don't be afraid of the babesia treatment -- it was actually just fine for me, and I'm really sensitive to meds.
Also -- You might talk to your doc or the doc's nurse or a nutritionist about the probiotics and the effect they have on you. My Lyme doc insisted that patients take Florastor, a probiotic that is yeast-based, unlike acidophilus (which is bacteria-based). I had real problems with Florastor, but once those were taken care of and I didn't take it anymore, I got much better.
Probiotics are important when on a lot of antibiotics, so that you are replenishing the 'good' bacteria in the gut that are getting wiped out (along with the 'bad' Lyme bacteria) when taking antibiotics. My doc thought it would be easier to take Florastor, since it wouldn't be affected by the antibiotics, but once he figured out that I'm sensitive to yeast (it was making me bloated and achy and foggy), he took me off of it and said to make sure I took acidophilus at least a few hours before and after the antibiotics, or else the antibiotics would also kill the acidophilus.
If you are having problems with the probiotics, talk to you doc about trying another kind or whatever. Everyone is different, and I have always had a touchy gut, so I hear you.
Also -- You might talk to your doc or the doc's nurse or a nutritionist about the probiotics and the effect they have on you. My Lyme doc insisted that patients take Florastor, a probiotic that is yeast-based, unlike acidophilus (which is bacteria-based). I had real problems with Florastor, but once those were taken care of and I didn't take it anymore, I got much better.
Probiotics are important when on a lot of antibiotics, so that you are replenishing the 'good' bacteria in the gut that are getting wiped out (along with the 'bad' Lyme bacteria) when taking antibiotics. My doc thought it would be easier to take Florastor, since it wouldn't be affected by the antibiotics, but once he figured out that I'm sensitive to yeast (it was making me bloated and achy and foggy), he took me off of it and said to make sure I took acidophilus at least a few hours before and after the antibiotics, or else the antibiotics would also kill the acidophilus.
If you are having problems with the probiotics, talk to you doc about trying another kind or whatever. Everyone is different, and I have always had a touchy gut, so I hear you.
Hi Ricobard. I can totally relate to the excessive daily sweats....then chills. Had that all summer. Never had it before this year. Heat has never bothered me, until this past summer. Never have been able to take the cold temps.
Dr told me to start the pain meds again. He said they seem to be working great with the antibiotics & I'm probably needing all 4, so I can continue to improve, whether I feel I need them or not.
Just by chance, this past year, I found that 1/2 tablet of Aleeve Sinus & Cold (generic), 2 or 3 times a day got rid of the pain. Was so hoping I wouldn't need them anymore. I took 1/2 tablet, about 30 min ago. I can't handle a whole tablet at once. Pain is easing down now. For some reason, Aleeve, by itself, doesn't stop the pain. Also, that one bothers my kidneys. I have no problems with the Sinus & Cold. If it weren't for Flagyl, I wouldn't have slept at all last night. Never makes me sleepy, but sure sleep good, when I go to bed.
I'm thinking Babesia, also. I'm a bit afraid of treatments for it. From what I've read, it's not an easy treatment & many become ill from the meds that are given. When I get to an LLMD, I sure hope he/she give me something that doesn't react on me.
As for the probiotics....not only do they constipate me, but I get to the point that I can no longer urinate. My stomach swells up so much & is difficult to wear fitted clothes, which I need to do, where I work. My doctor said I need them and not to stop taking them. He suggested twice a week & that works great for me. They do help me a lot.
I'm sure I have GI problems, somewhere. Now, I'm thinking maybe the Lyme, the past few years has stirred something up, somehow. Only thing that was found, 30 yrs ago, were 3 ulcers. Don't have them now.
Dr told me to start the pain meds again. He said they seem to be working great with the antibiotics & I'm probably needing all 4, so I can continue to improve, whether I feel I need them or not.
Just by chance, this past year, I found that 1/2 tablet of Aleeve Sinus & Cold (generic), 2 or 3 times a day got rid of the pain. Was so hoping I wouldn't need them anymore. I took 1/2 tablet, about 30 min ago. I can't handle a whole tablet at once. Pain is easing down now. For some reason, Aleeve, by itself, doesn't stop the pain. Also, that one bothers my kidneys. I have no problems with the Sinus & Cold. If it weren't for Flagyl, I wouldn't have slept at all last night. Never makes me sleepy, but sure sleep good, when I go to bed.
I'm thinking Babesia, also. I'm a bit afraid of treatments for it. From what I've read, it's not an easy treatment & many become ill from the meds that are given. When I get to an LLMD, I sure hope he/she give me something that doesn't react on me.
As for the probiotics....not only do they constipate me, but I get to the point that I can no longer urinate. My stomach swells up so much & is difficult to wear fitted clothes, which I need to do, where I work. My doctor said I need them and not to stop taking them. He suggested twice a week & that works great for me. They do help me a lot.
I'm sure I have GI problems, somewhere. Now, I'm thinking maybe the Lyme, the past few years has stirred something up, somehow. Only thing that was found, 30 yrs ago, were 3 ulcers. Don't have them now.
Sorry to hear you"re in pain again. :(. I have read of others with relapsing remitting cases. Mine did that for nearly five years before continuous symptoms kicked in.
When you mentioned night sweats, I immediately thought of Babesia. Babs is infamous for interfering with Lyme treatment. They don't know how, but it might block the action of abx somehow.
I have Babesia, and I only had night sweats twice in 7 years. Later, I developed random recurring excessive sweating during the day. A few times, I had goose bumps all over my legs and shook with a chill as my torso was sweating too much. "Crazy and frustrating" is the best I can describe it.
Now that I have started Babesia treatment, I consistently have excessive sweating within 1-2 hours of taking a dose of meds. While I tested negative three times, I am now 100% confident that I have it. It took a year for my LLMD to figure out I had it. I wish I had tried a Rx for it a long time ago. (Three herbals didn't seem to help. A fourth finally did - Nutramedix Mora.)
The night sweats and your recurring symptoms make Babesia worth a look.
I am really curious as to what happens when you take probiotics. I haven't heard of being unable to tolerate them. It sounds like you may have some real imbalances in your body chemistry. Have you had GI troubles? (I had a multitude! I went through numerous Rxs and supplements to smooth mine out.)
When you mentioned night sweats, I immediately thought of Babesia. Babs is infamous for interfering with Lyme treatment. They don't know how, but it might block the action of abx somehow.
I have Babesia, and I only had night sweats twice in 7 years. Later, I developed random recurring excessive sweating during the day. A few times, I had goose bumps all over my legs and shook with a chill as my torso was sweating too much. "Crazy and frustrating" is the best I can describe it.
Now that I have started Babesia treatment, I consistently have excessive sweating within 1-2 hours of taking a dose of meds. While I tested negative three times, I am now 100% confident that I have it. It took a year for my LLMD to figure out I had it. I wish I had tried a Rx for it a long time ago. (Three herbals didn't seem to help. A fourth finally did - Nutramedix Mora.)
The night sweats and your recurring symptoms make Babesia worth a look.
I am really curious as to what happens when you take probiotics. I haven't heard of being unable to tolerate them. It sounds like you may have some real imbalances in your body chemistry. Have you had GI troubles? (I had a multitude! I went through numerous Rxs and supplements to smooth mine out.)
Thanks, mojogal. Wish I was continuing on the same path, as before. Not at all happy about having some symptoms coming back. Will see what my reg doctor has to say soon. Don't have an LLMD yet, but hoping to finally see one by the end of next month.
Wishing you a great day, with little discomfort.
Wishing you a great day, with little discomfort.
Glad you feel better!
I have heard of the seasonal cycles before. Your LLMD should know.
I wish mine were seasonal, lol
I have heard of the seasonal cycles before. Your LLMD should know.
I wish mine were seasonal, lol
Great info....thank you!
Will see what my doctor says tomorrow. I don't take herbs, so I'm OK on that one. Didn't even think about the doses going according to weight.
Will see what my doctor says tomorrow. I don't take herbs, so I'm OK on that one. Didn't even think about the doses going according to weight.
I always stuck to the dosages the doc specified on meds -- there are too many things about medication that there was no way for me to know, and it can really mess things up. More isn't always better, so I'd check with the doc before increasing or decreasing doses and before starting or stopping the meds. The dosages are already calibrated according to body weight etc.
Also, vitamins and herbs can interfere with antibiotics sometimes, so that's something I'd clear with the doc and pharmacist too... sometimes the pharmacists are more aware of possible drugs interactions than the docs are.
Also, vitamins and herbs can interfere with antibiotics sometimes, so that's something I'd clear with the doc and pharmacist too... sometimes the pharmacists are more aware of possible drugs interactions than the docs are.
Still can't take magnesium nor calcium. System won't tolerate either & causes severe pain.....much worse than the Lyme pain. Can't even tolerate yogurt...same thing happens. Tried the Epsom Salts...same thing.
Wondering, though...what if I increased the Flagyl a little. Maybe by 1/4 or 1/2 tablet? Also, maybe increasing both Flagyl & Cipro might help...same amount? Only taking 250 mg of both....once/day. Haven't been able to tolerate more than that amount because it causes severe dizziness & brain fog. However, it took me 1 week to get used the the Flagyl (according to my notes back then). I go on vacation next week. Thought I'd try that procedure starting next week. Will ask my doctor tomorrow, but wondering what you think about it?
I'm also taking a probiotic, twice/week. Can't tolerate more than that, but feel so much better, since I started taking it. Thanks so much for the info on that one, too.
Forgot to mention...my eyesight improved, during those few months. I'm having problems with my vision again today.
Wondering, though...what if I increased the Flagyl a little. Maybe by 1/4 or 1/2 tablet? Also, maybe increasing both Flagyl & Cipro might help...same amount? Only taking 250 mg of both....once/day. Haven't been able to tolerate more than that amount because it causes severe dizziness & brain fog. However, it took me 1 week to get used the the Flagyl (according to my notes back then). I go on vacation next week. Thought I'd try that procedure starting next week. Will ask my doctor tomorrow, but wondering what you think about it?
I'm also taking a probiotic, twice/week. Can't tolerate more than that, but feel so much better, since I started taking it. Thanks so much for the info on that one, too.
Forgot to mention...my eyesight improved, during those few months. I'm having problems with my vision again today.
I'm glad you're keeping your spirits up -- I can only imagine how hard it must be after sooooo many years.
A thought: have you tried magnesium (Mg) supplements? It might help the aches and pains. Lyme uses up Mg, and the American diet is often deficient in it, so Lyme takes it down even further. I still take Mg supplements and I feel better for it. I read that any kind ending in "-ate" is most absorbable -- I take a kind that has Mg citrate, aspartate and orotate all in one capsule, and I like it a lot. I've also taken Mg malate, and it was fine too. You might try it and see if it helps, but be sure to tell your doc that you are taking it, so that can be factored in.
(I've read and heard others say that the usual calcium-magnesium combo [brand name: 'CalMag'] doesn't work well because the Mg in it is not very absorbable.)
Keep us posted -- maybe 2013 will be a lucky year for us all, nevermind the '13' part. ;)
A thought: have you tried magnesium (Mg) supplements? It might help the aches and pains. Lyme uses up Mg, and the American diet is often deficient in it, so Lyme takes it down even further. I still take Mg supplements and I feel better for it. I read that any kind ending in "-ate" is most absorbable -- I take a kind that has Mg citrate, aspartate and orotate all in one capsule, and I like it a lot. I've also taken Mg malate, and it was fine too. You might try it and see if it helps, but be sure to tell your doc that you are taking it, so that can be factored in.
(I've read and heard others say that the usual calcium-magnesium combo [brand name: 'CalMag'] doesn't work well because the Mg in it is not very absorbable.)
Keep us posted -- maybe 2013 will be a lucky year for us all, nevermind the '13' part. ;)
Thanks, Jackie. Good to hear from you again. Your answer gives me a BIG sigh of relief. Back on pain meds again, which I'm not happy about at all. Shoulders hurt terribly tonight.
Yes, I have been keeping notes to present to an LLMD. Also, to keep my regular doctor posted on all the improvements I've had. I'm so disappointed that I'm going through this again. I see my doctor tomorrow and I know he'll be disappointed, too.
Happy New Year to you, too.
Yes, I have been keeping notes to present to an LLMD. Also, to keep my regular doctor posted on all the improvements I've had. I'm so disappointed that I'm going through this again. I see my doctor tomorrow and I know he'll be disappointed, too.
Happy New Year to you, too.
Long time, no post! Good to hear you've been doing better -- I've no words of wisdom on your situation, but all this will be good data when you see an LLMD.
I was also on Flagyl for Lyme, and it was good stuff, along with another med I can't at the moment recall. I think the Flagyl was the 'cyst buster' so the other antibiotic could reach the Lyme.
I would guess (tho I have nothing to back this up) that you are going through what sounds like a seasonal cycle for you, tho sounds like it's not as bad as previous years. This is good! It could be that you have a co-infection that is causing some of the symptoms, and the interplay of Lyme plus something else is always hard to chart.
Just hang on, and keep on keeping on as you are, till you get to see the LLMD. Take notes of what is happening, so you don't forget by the time your appointment arrives -- all this is good data to convey to the doc. They can read patterns into what otherwise seems like a mishmosh of symptoms.
Happy New Year, and all the best for 2013! Keep us posted --- !
I was also on Flagyl for Lyme, and it was good stuff, along with another med I can't at the moment recall. I think the Flagyl was the 'cyst buster' so the other antibiotic could reach the Lyme.
I would guess (tho I have nothing to back this up) that you are going through what sounds like a seasonal cycle for you, tho sounds like it's not as bad as previous years. This is good! It could be that you have a co-infection that is causing some of the symptoms, and the interplay of Lyme plus something else is always hard to chart.
Just hang on, and keep on keeping on as you are, till you get to see the LLMD. Take notes of what is happening, so you don't forget by the time your appointment arrives -- all this is good data to convey to the doc. They can read patterns into what otherwise seems like a mishmosh of symptoms.
Happy New Year, and all the best for 2013! Keep us posted --- !
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