Hello, I have been trying to find some information on which vitamins are essential. I have not actually had a diagnosis of Lyme, and can't afford to go to a LLMD. I have convinced my doctor that there is a very good possibility of it being Lyme.
Although they only thing he did is give me a 30 day supply of Doxycycline. He wanted to do lab test, but after I was already on antibiotics. I am not sure lab would show anything, since it isn't a specialized lab. I can't really afford lab work either. The only reason I can get the doctors appointment done is I have free office visits. Thanks to my sister working there.
I started about 3 weeks ago taking several vitamins- Vision Formula --daily Calcium, Magnesium, and Zinc-twice a day Super B-complex daily Fish, Flaxseed and Borage Oil-twice a day Glucosamine, Chondroitin- twice a day Cranberry- daily
I have been on the doxy for almost 3 weeks now. I am not feeling any better at all.
I have the neck crunching, severe headaches, muscle aches, joint pain, severe fatigue, brain fog (some days), quite a bit of back pain, lots of hair loss(over the years).
I am just not sure why I am not feeling any better. Actually, in some ways I feel worse since starting the antibiotics and vitamins. I am starting to have heartburn, stomach pain(ulcer pain), can't eat much or I get that bloated feeling, lots of gas on my stomach.
Starting to feel really depressed cause I can't do anything. I cleaned my carpets yesterday, and it drained me. I tried to take my kids to the park yesterday evening, we were only there for 10 minutes. I was getting really light headed, and so tired I couldn't keep up with my daughter.
I thought vitamin supplements would help me feel better, but I feel worse.
Thanks for listening.
Posted by dmc (Member # 5102) on :
you don't say what dose of Doxy your taken.
I've heard Vit. Bs feed Lyme and if you scrollo down there's a discussion re: magnesium.
Posted by kgarrett (Member # 17420) on :
If you have lyme - many people feel worse at first on antibiotics. Then they feel better - but every case seems to be unique.
Others have longer experience than I and can give better advice but, I would definitely put out the cash for at least a basic lyme panel at a specialized lab. I paid 260 - I think Fry might be cheaper. But, you need to plan now because the best way to be sure is to finish the 30 days of doxy and then have the blood drawn between 10-14 days after finishing the pills. Contact the lab to get the kit and your doctor will have to sign the slip.
I had like 7 tests at labcorp over 2 years and only one was positive so I know there are a lot of false negative tests.
I had stomach problems also with doxy and switched to ceftin.
Posted by tcw (Member # 15698) on :
I would suggest that you either drop the cal-mag supplements or time them as far away from your doxy doses as possible. Calcium, magnesium, aluminum and other metals reduce the effective dose of doxy that gets into your body.
You should stay away from mineral supplements, antacids, Pepto Bismol or bismuth preparations and probably dairy foods also for 2 hours around your doxy dose if you want full absorption.
Posted by asummers (Member # 18068) on :
Check out Dr. B's Guidelines. He has a list of supplements that Lyme patients should be taking. PM me if you would like the link.
Posted by Keebler (Member # 12673) on :
I am of the opinion that Vit C is the most important Vitamin to supplement, and the others might not be as important if you aren't deficient in them.
If you have low energy, Vit B might be helpful.
One supplement that might help with the headaches is Wobenzym. They sell it on http://www.vitacost.com . I think the small bottle is only 26 dollars, so you can at least try it for a few weeks. You would know pretty soon if it was helping.
If you are really affected by Lyme though, the Wobenzym could produce a "herx" response, so be aware of that.
With Wobenzym, you would need 6 pills twice daily on an empty stomach. The only reason you would have to worry is if you have a bleeding disorder, or problems with your blood not clotting.
The other supplement you should be on is probiotics. Get a good brand from a health food store, preferably ones that require refrigeration. Take a 2-4 pills 2-3 hours after each antibiotic dose (so probably twice a day). This will prevent that gassy feeling in your stomach, I hope.
If money is really tight, I would drop a couple of the supplements from above that you don't think are helping you, and try those two things I mentioned. The probiotics are a must while on antibiotics.
If the doxy doesn't help you much, and it's not a herx (read up on Herxheimer reaction)....then consider switching to minocycline, but increase the dosage slowly on that one. That one may cause serious herxing if you have Lyme, but that is sort of what we have to go through (to an extent) to get better.
Good luck!
Posted by Hoosiers51 (Member # 15759) on :
ps--the oils are a good thing because they reduce inflammation, but I would be sure it's a high quality brand that says "free of contaminants" on the bottle. Health food store would be a good place to ask about contaminant-free fish oil if you are interested.
The Glucosamine/Condroitin can be good for arthritis....my parents both use it for that. They even used to give it to our dog with arthritis and it made his last years more comfortable. He used to not be able to stand up, but then with the Glucosamine/Condrotin...he could.
If it isn't helping you after a few months though, it's not worth it. It normally takes quite a few weeks of cointinuous use to see if it will help though, so don't give up on that one too early.
Posted by jhspn00 (Member # 19733) on :
Thank you guys for your helpful information. I read the guidelines, but got confused on the supplements.
Hoosiers51- Thanks I will look into the Wobenzym and the Herx reaction. I read a little about it, but had alot going on and just skimmed it.
I don't know which of them is causing me to have severe heartburn, but I am going to stop all of the vitamins for a couple of days and restart one at a time so I know which one I can't tolerate. I know when I was pregnant I couldn't take the prenatal vitamins because of the heartburn, but I blamed it on the pregnancy.
I think the hardest part of dealing with any of this is that my daughter rarely sleeps through the night. So I don't get a solid rest. I don't feel to bad today, and she did sleep last night.
I actually got 8 solid hours of sleep. That hasn't happened to me in a very long time. Usually my sleep is broke up into about 4 hours here and 1 hour there.
Thanks for the advice it is greatly appreciated.
Julie
Posted by METALLlC BLUE (Member # 6628) on :
I was going to repeat the same thing TCW said. It's crucial to follow that advice.
Posted by jhspn00 (Member # 19733) on :
Just an update. I stopped all the vitamins and remained on the antibiotic. Oh and I forgot to tell someone above that asked.
I am on Doxy 100mg twice a day.
I don't have the heartburn I was having, and felt really good up until early afternoon yesterday. Then my neck started hurting again.
I can barely move my neck, and my headache came back full force. So starting tomorrow I am going to start adding back in vitamins one at a time.
I just can't afford LLMD or any of the testing. It just isn't possible. We have our own small home business, that pays our bills, puts food in our kids mouth, clothes on their back, and a roof over their head. We are lucky to get that done.
I am a nurse, but I hurt so bad that I haven't done it in quite some time.
Thank you for your help. Julie
Posted by Cold Feet (Member # 9882) on :
Keebs, thanks for those links from Dr. B. I should have read them before but never did.
A few comments and questions for you folks:
- Has anyone tried the NT factor? If so, any positive results?
- He recommends SBOs from Researched Nutritionals?! This really surprised me...?
Thanks for any comments.
Posted by sixgoofykids (Member # 11141) on :
That is a low dose of doxy. It should be min. 300 mg daily ... or more! You can read about it in the Dr. B guidelines.
If you're really not going to be able to afford ongoing treatment, I'd look into what alternative treatment you will try. The one month of low-dose doxy won't cure it.
I liked the Buhner protocol. The book he wrote, Healing Lyme, is very good. His four core herbs are andrographis, resveratrol (Source Naturals brand), Samento, and Banderol. I had good results from these herbs, but they do not help much with coinfections.
I took NT Factor. I think it's a good product, but I don't know if you get enough results to justify the cost.
I really like the Triphala that has been discussed on the board recently.