I have been taking doxycline for exactly one week now. I have also been taking Nystatin for yeast one week, (pretty healthy doses too!). I have been taking vitamin D and vitamin C. I am going to order some more Parastroy and start taking that again.
I am puzzled about the magnesium. I don't have any problems with constipation. I have heard it helps with the pain.
The pain is my main problem right now. I have always had the deep muscle pain and it is mainly in the bottoms of my feet (sometimes it switches to the tops and sides of my feet), it is sometimes in my wrist and hands, shoulders....
But it is not even close to being as bad as my feet and calves. I purchased Magnesium Oxide and found out that Magnesium oxide is not the good kind.
I would have thought that the pain would die down somewhat. I know it has only been a week. I know this is a slow paced treatment...But the pain is really bad.
I do have something good that has happened..I have lost almost ten pounds. Of course I have been doing the coconut cream stuff and also green tea. That could account for the weight loss. That is a good thing!
If this doxy does not do some good in four weeks, I am to go on to the next antibiotic. I am at work so I am not sure which antibiotic it is.
I sure hope it doesn't take too much longer before it helps.
I am open to suggestions.
Posted by Keebler (Member # 12673) on :
- Pain is directly related to liver & kidney stress (as well as from so many other things but the liver support is the place to start).
Likely, you are experiencing a herxheimer reaction. What that is, and what helps:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. Pain relief links, too. -
Posted by Keebler (Member # 12673) on :
- Have you been assessed for coinfections, too? The pain you describe in your feet could be due to Bartonella.
Still, liver support, magnesium, fish oil help.
Magnesium is for so much more than we can imagine. See the Magnesium links in the set above. Good detail there.
If you happen to be vegan or vegetarian, TAURINE must also be supplemented. Even if you do get some from eggs, fish, meats, it may be very helpful to supplement magnesium & taurine -- and calcium. But it all needs to be balanced and timed just right.
Can you get some massage? -
Posted by Keebler (Member # 12673) on :
- Loosing ten pounds so fast could be very hard on the liver. Still, it is nice to feel some lightness, I'm sure.
Be sure to eat enough - It matters not so much what weight you are (that will flucutate so just focus always on what's healthy).
Your body will need all kinds of fabulous foods - brightly colored veggies, mostly. But also key protein and good fats. Enhance flavors with garden herbs and spices.
Do not go without food as that is very hard on the liver and could lead to a spike in porphryin levels, very toxic to the liver and to the nerves in the body. More detail about that is also in teh liver support thread above.
Just want to be sure that you do keep up with nutrition, all through the day.
None of this is a walk in the park but I hope this information helps you feel better soon (or at least better understand all the processes).
Take care. -
Posted by Lymetoo (Member # 743) on :
Don't forget that you will herx. One month is too soon to tell with anything.
For one thing, you don't know which illness is causing the pain. It could be lyme, babesia, or bartonella, to name a few.
So if it's bart and you haven't taken the meds for it yet .. you won't get any relief yet.
Hang in there and give the doxy a little time.
Congrats on the weight loss!!!
(PS.. the foot pain sounds like bart)
Posted by carolann2013 (Member # 39964) on :
Hi Keebler,
I would like to know which magnesium supplement to get and where to find it. All that I can find in the drug stores is Magnesium oxide and that is not what I need.
I thought that I wouldn't herx until after the fourth week. The pain has been here since I went to the doctor. It hasn't eased up at all. I think the magnesium will help if I ever find out which kind and where to get it
Posted by Keebler (Member # 12673) on :
- The Liver Support thread has detail about magnesium, type, vendor links, etc.
Sorry, I just don't have energy to pull that out of there but others might.
You could start with Peter Gilham's NATURAL CALM.
www.iherb.com -
Posted by Lymetoo (Member # 743) on :
I buy KAL brand mag glycinate from Vitacost. I think they also have the Source Naturals Ultra-Mag, which is also good.
Calm is good if you can tolerate the flavorings and the stevia. They do have ONE that is additive free.
You will find that www.vitacost.com is your friend!! Posted by carolann2013 (Member # 39964) on :
Lymetoo, Yes, the list of antibiotics has what it treats. You are familiar with the treatments.
I am going to find out about the magnesium and get some, I think that that will help. The doc said to get some and the first I got was magnesium oxide and it was wrong.
I have been reading some posts and their links about magnesium. I didn't realize that magnesium done more than clean you out.
I just finished reading Keeblers post and their links.
Posted by Lymetoo (Member # 743) on :
Good job!!
Posted by Lymetoo (Member # 743) on :
I also buy NOW brand Cucumin from www.SwansonVitamins.com . It helps with pain and inflammation.
I wish Vitacost carried it, but all they have are other brands or other "turmeric."
Posted by Keebler (Member # 12673) on :
- Do not eat dairy with some antibiotics - and do not take magnesium, calcium or the like at the same time as antibiotics (abx) as the minerals will keep abx from working as well as they should.
If you are taking doxycycline: AVOID ALL SKIN EXPOSURE TO SUN or even to "bounced" sun rays. Even through a car window.
You might need to get some white cotton gloves from the pharmcacy. Two pair may be needed but the light cotton will be cooler than others. They have "treatment gloves" for those who put greasy stuff on their hands at night.
Tight weave of fabrics in your clothes so sun does not sneak through.
Keep separate by a couple hours both clock directions (unless otherwise directed):
RX - Antimicrobial Rx (antibiotics, antifungals, antiparasites, antivirals. Some Rx will need to be separated from each other, though).
MINERAL or HERBAL SUPPORT SUPPLEMENTS (liver support can lessen Rx effect if taken at the same time - or otherwise interact. Just keep separate unless other instructed by your treating doctors.)
PROBIOTICS (antifungal Rx or herbs can cancel out if taken at the same time) Probiotics are essential to help prevent systemic fungal infection from developing. Olive Leaf Extract can be very helpful, too. Search: Seagate, OLE.
RINSING mouth out with antifungal mouth rinse right after swallowing an abx would be okay. Just rinse, swish and spit out. -
Posted by Lymetoo (Member # 743) on :
--and do not lie down for an hour after taking doxy
Take the pills in the MIDDLE of a full meal.
Posted by Sammi (Member # 110) on :
How long have you been sick? It will definitely take time before you feel better.
Personally, I don't think taking an antibiotic for one month is long enough to tell if it is working.
Hang in there. Good luck with your treatment.
Posted by jjourneys (Member # 39813) on :
Remember, antibiotics are not pain killers or miracle pills. Their job is to kill off the bugs you've caught. This can take a while. Most of us will be on antibiotics for years to get rid of the Lyme and it's co's.
I was on Doxy and 3 other antibiotics from the beginning, after huge herxing episodes - which causes extreme pain, and about 6 wks I finally started feeling better.
Don't give up too soon! Allow the antibiotics to do their job!
Posted by carolann2013 (Member # 39964) on :
Yes, I keep forgetting about how this Lyme works. Usually I go to the doctor because I have a sore throat, or a cold and they give me antibiotics and a couple of days I am better.
Just went to Vitacost and bought the magnesium. I have read that might help the pain.
Since I last posted, the pain has moved almost completely from my feet and now it is into my hip and leg. Can't raise my leg up.
This has to be the craziest disease in the world!
Thanks all!
Posted by carolann2013 (Member # 39964) on :
Sammi,
As far as I can tell, I got bit twice in early fall of 2010. Began to have a lot of muscle and joint pain after this past Christmas..migrating pain.
Began reading up on joint and muscle pain and Lyme kept coming up as a link. Clicked on Lyme and started to learn about the symptoms.
I had so many of them!
Also, the site of the last tick bite keeps coming back on me. It becomes inflammed and itches.
Exactly a week ago, I finally made it to my first LLMD doctor. He diagnosed me with Lyme. I wasn't surprised.
I am only taking doxy right now. Every month I change up. I hope this is a good protocol.
I am also taking vitamin C, green tea, vitamin D, and soon the magnesium. I purchased magnesium oxide and I think it was not the right kind for me.
Just ordered from Vitacost, along with Parastroy and will be starting it as soon as it comes in.
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by carolann2013: I have lost almost ten pounds. Of course I have been doing the coconut cream stuff and also green tea. That could account for the weight loss.
Oh, I'm glad to hear that the coconut cream concentrate and green tea capsules resulted in weight loss for you.
Did you have the problem of your kidneys working overtime? I would wake up after a couple hours of sleep with a bursting full bladder. There was no way I could sleep through the night.
(It's possible this was related to a lack of anti-diuretic hormone, which is supposed to reduce the amount of urine produced when you are sleeping.)
I stopped the routine after two months, and gradually regained the weight. I think it was because the coconut and green tea increased my metabolism while I took them.
You asked about magnesium. Here are two products I use:
Carolann - you have had this for a while, so it is going to take a while to go away.
Lyme is rarely "just" Lyme. You need to be evaluated for co-infections as well. If your LLMD doesn't know how to do this, then start looking for another doctor.
Also, people with chronic Lyme generally require multiple antibiotics at the same time, and they take a long time to work. He may be starting you out with one, which is fine and even good, as long as there are plans to add in others with it, before too long.
The plan to switch off doxy after just one month seems odd to me. Usually it takes a lot longer than that to fully work, and you can expect to feel a little worse in the beginning due to the die-off.
Posted by Keebler (Member # 12673) on :
- An echo to VPinVA's concerns -
Liver Support methods must be in place (link at the end). Here's where to begin:
Then, considering your Rx Treatment Plan . . . .
Your treatment plan should look something like this - although each LLMD has their own methods and each patient requires an individualized approach, still, this is a basic measure:
�� Nutritional Supplements in Disseminated Lyme Disease ��
J.J. Burrascano, Jr., MD (2008) - Four pages
[this last link is not going through right now. Go to pages 27 - 30 in the original link above.]
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posted by BleedGreen (Member # 33468) on :
Mag Tabs SR is what my LLMD swears by for magnesium.
Posted by GiGi (Member # 259) on :
Carolann, what is the "coconut cream stuff" that helped you lose weight?
Thank you.
Posted by nonna05 (Member # 33557) on :
Yes what is the coconut cream stuff???
Said above no calcium or mag with ABX's.. but what about IV's , Myere's cocktails, shots.. Then these are just in you running around... Is that different as far as ABX's working??
Or as above MAG SR..that means it's constantly there/somewhere..
Posted by Keebler (Member # 12673) on :
- Nonna,
It's okay to have a constant presence of mangesium, calcuim IF it is the normal level of what a body is supposed to have.
When taking supplements, that can load up a lot all at once and compete or interfere in other ways with Rx.
As for taking nutrient IVs (like a Myers' cocktail), I dont' know if they are given at the same time as any antibiotic would be but it's up to the prescribing LL doctors to guide that. -
Posted by Sammi (Member # 110) on :
carolann2013, it will definitely take time to feel better since you have been sick for over two years.
Again, I don't think it is good to change antibiotics every month (I am not a doctor of course!). From what I understand, mono-therapy is usually not successful. I also agree with what WPinVA posted.
Learn as much as you can so you can determine which treatments are best.
Posted by Keebler (Member # 12673) on :
- Ditto to Sammi: "mono-therapy is usually not successful"
This is true and what all the LL doctors have been saying for a very long time. Combinations are required for both pharmacueticals & even for herbal approaches to any of the tick-borne infections.
Even for the bacteria that causes ulcers (H pylori) a very specific combination Rx is required. They no longer give just one antibiotic for ulcers due to failure of that approach. -
Posted by Keebler (Member # 12673) on :
- WPinVA: "He may be starting you out with one, which is fine and even good, as long as there are plans to add in others with it, before too long." (end quote)
Also agreed that to help ease a patient into this and avoid a huge herxheimer, a slow start - but this can't go for too long.
Better than a slow start to Rx (or just that), though, is getting liver support in place first so that the body can better tolerate treatment.
Doxycline, alone, can CAUSE lyme to become chronic and harder to treat. It (or other single antibiotics) can drive borrelia spirochetes into cyst form and the doxy has no effect once that happens. -
Posted by Keebler (Member # 12673) on :
Topic: replication within cystic forms of lyme -
Posted by carolann2013 (Member # 39964) on :
I will be taking doxy ,, then Ceftin, Zithromax, Flagyl, clindamycin and quinine,, then biaxin and Plaqenil.
I am taking sulfacetamide for my eyes.
I am taking Nystaten for yeast.
I am taking vitamin D3 (about 6000 u daily).
I have ordered some Magnesium and will be taking it.
I am to consider a gluten free diet.
I am not eating sugar.
I am to consider eliminating Night shade foods.
I need to find a Biofilm supplement. Which is something I need to find....pretty quick.
I haven't heard from the hormone/thyroid tests, but I imagine they are all crazy and will have to take something for those.
I will be making an appointment in about four to five months with my LLMD. I think they are going to check the liver and stuff like that.
Check my progression.
I know it cost me a bundle to see this doctor. It is a six hour drive. I can't go to a doctor that is in New England, Washington DC or California... I can't take off work to do anymore.
Posted by carolann2013 (Member # 39964) on :
All of the antibiotics I listed above are within my reach. I have prescripts for all. It has been said that you aren't supposed to take them all at once.
I suppose that I could take a couple at a time. I have no idea on how much, or which ones.
Posted by carolann2013 (Member # 39964) on :
GiGi,
I purchased some coconut cream from Tropical Traditions. I read on a post here that it might help with metabolism and maybe make it possible to lose a little weight.
Not sure if that is what caused it or not. I also know that Doxy could cause a loss of appetite.
I also took Green Tea capsules. The coconut cream/oil and green tea are supposed to help with metabolism.
There are a lot of postings here about those two items, especially the coconut cream. There are many good things coconut cream does for you.
Posted by WPinVA (Member # 33581) on :
"I suppose that I could take a couple at a time. I have no idea on how much, or which ones."
This statement concerns me a lot. Please call your LLMD ASAP to get explicit instructions. These are strong meds with side effects so you don't want to just double up at random.
Also, there is an art to which ones you take together to cover certain angles.
Finally, 4-5 months sounds like way too long to go between appointments.
I don't mean to pile on or stress you out, but this does raise some concerns.
Posted by GiGi (Member # 259) on :
carolann, thank you. I had the Tropical Traditions book - got it years ago - but it's hiding somewhere in my oh-so-many books everywhere. I would like to get back my pre-Lyme weight. Thanks and get well.
Posted by carolann2013 (Member # 39964) on :
I do have explicit instructions.
I take each antibiotic for four weeks.
If I can't tolerate one, then I go to the next antibiotic.
I am also able to call the doctor if I have any questions or if anything is wrong.
I have to depend on what he says. I cannot go to different doctors until I find one that seems to suit everyone here. This doctor has studied Lyme for many years.
I am sure that if I needed to see him sooner, I could get in to see him. But he is also six hours away. It is very costly to go see him.
And yes, you do tend to stress me out. You may not mean to and your intentions may be very honorable, but it is also just your opinion.
I have to trust my doctor. After the first four months, he may add other stuff, he may mix antibiotics, but right now, I am going to do what he has asked.
I am also waiting on results from another test he took, a hormonal and thyroid test.
Posted by Lymetoo (Member # 743) on :
This doctor does not exactly use "mono-therapy" .. he does combine meds. He DOES treat coinfections. He DOES get people well. I've been well for 9 yrs due to his wonderful care.
We all know that severe herxing can land you in the hospital or worse.
Carol Ann - Yes, I understand - it can be stressful to get a lot of different opinions all at once. Good luck to you!
Posted by Lymetoo (Member # 743) on :
And boy, do we have opinions on this board!
Posted by Catgirl (Member # 31149) on :
I agree you should listen to your doc. That said, people here are lyme literate and are trying to help. Several lyme docs have said at annual lyme seminars that their patients know more about lyme than they do. That's because we all communicate on this blog. We've all learned a lot here. We are a team. We are lyme warriors.
Dr. Burrascano (well known lyme doc) recommends staying on a med for at least 4 months. I think this is wise because a patient could be herxing right around the 4 week mark, in which case, it would be difficult for the patient to distinguish the med from the herx.
I can usually tell if a med will work for me within a week or two. If it's not working for me I get sick (vomit), or dizzy (vertigo). Herxes are different though. You feel terrible and have flu like symptoms. That's when your med is actually working and the symptoms you are feeling are the die off from the meds killing lyme.
There is a really good DVD called Putting Lyme Behind you. The quality isn't that great but the info Dr. Burrascano presents is (below).
Also, it takes time to improve. Hang in there and best wishes!
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