posted
For background, I'm new to the Lyme community; I've only been ill for about 2 months now. Suspect Bartonella and Lyme, negative ELISA with Labcorp.
I met with Dr. F in NC, and was impressed with her. PM me if you'd like a thorough review of her. She uses the ILADS protocol, and has her patients sign forms consenting to that standard of treatment. Seems very caring, knowledgable, and practical.
She spent 2 hours with me, took about 15 vials of blood for labs (hello, anemia!), and started me on some Doxy in the meantime.
I have a phone appt in a month. I am really glad to be getting somewhere, and I think Dr F will really try and find out what is wrong.
Testing for Lyme, co-infections, heavy metals, and some other things. I forgot to ask which labs she uses, but the phlebotomist said that they were going to about 6 different states, incl. California. Her website says she uses Igenex when necessary.
She advised me to ramp up slowly to the full dose. How slow would you go? I'm thinking 2-3 days at each "level."
Also, what other advice do you have on Doxy? I'm on a stout probiotic from the drugstore, but am planning on ordering a really high-quality one. Also taking Epsom salts and peroxide baths.
The advice given by lyme docs regarding doxy is to take it with food. Specifically, eat half a meal, then take the doxy, then eat the other half of the meal.
If you don't do this, you can suffer with terrible reflux, stomach upset, nausea, and vomiting.
Here is what Burrascano says:
"*Doxycycline- Adults: 200 mg bid with food; doses of up to 600 mg daily are often needed, as doxycycline is only effective at high blood levels. Not for children or in pregnancy.
If levels are too low at tolerated doses, give parenterally or change to another drug." (page 18)
So, the proper dose is 200 mg twice per day. May need up to 600 mg daily. Doxy can be tough to handle due to stomach upset.
Wish you the best. We certainly need good lyme docs in that area of the country. I hope this is one!
Posts: 9931 | From Maryland | Registered: Dec 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
DO NOT GO OUT IN THE SUN without sunscreen and protection. Even driving your hands on the steering wheel will get a chemical burn.
Besides that it sounds like your LLMD is starting out OK.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Did she tell you about the anti-yeast diet?
Here is Burrascano on probiotics, from page 28:
"BASIC DAILY REGIMEN (in order of importance)
1. PROBIOTICS (required when on antibiotics)
Kefir: This is a yogurt-like drink that is said to more permanently replenish beneficial flora. It is only necessary to drink 2 to 4 ounces a day.
Acidophilus: the best kinds are frozen or refrigerated to ensure potency. Usual dose is two with each meal.
Plan to mix together several different brands to broaden the spectrum. Acidophilus can be gotten from most vitamin stores but some generic brands are of unknown freshness and potency. An alternative that does not need refrigeration and can be taken only once a day is a high potency, patented product called �Pro Bio� from Pharmanex. The ultimate mix of pre- and probiotics with soil based organisms is a product called �Prescript- Assist Pro� from Researched Nutritionals. This too does not need refrigeration.
In addition, have 4 ounces of sugar-free yogurt on occasion." [end of quote]
See where he says to buy refrigerated or frozen to ensure potency? That's why I recommended what I did.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
It is great that you like the doctor and that your appointment went well.
There are several tips to know about taking Doxy. As you know, do not have any dairy, magnesium or iron within two hours of taking it or it will not be absorbed properly.
Avoid the sun. You can get a severe burn even when wearing sunscreen. It can cause nausea, so eat something substantial and non-dairy before taking it. Do not lay down for at least an hour after taking Doxy or you can ulcerate your esophagus. This is very painful. Drink a full glass of water when you take it (for the same reason).
And as TF said, the best kind of acidophilus to get are refrigerated and have a high-culture count. Most health-food stores have them.
Good luck with your protocol!
Posts: 4681 | Registered: Oct 2000
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gigimac
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Member # 33353
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I am glad you are only two months in to your illness. I would hope this would make this much easier to recover! I have been ill for one year. I too see Dr.F, she is really nice and seems to be very knowledgeable. I didn't have the money to get labs done so I am applying for financial help.We are going on a clinical diagnosis of lyme and bart. I also have only seen her once and am looking forward to working with her to get my health back!!
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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My suggestion would be to start at 100 mg of doxy once per day and stay on that dose for 3 - 5 days. Then increase by 100 mg every 3 - 5 days. It is impossible to predict what if any reaction you will have to the med at any particular dose level.
If you have other tickborne infections such as ehrlichia or anaplasma or rickettsia or rocky mountain spotted fever doxy works on all of those plus the lyme. So for some people it is a very hard drug to take.
I think you will be in good hands with the doc. Now that she has moved into her new office and has her own staff I think all the communication glitches will be ironed out. The doc has had to switch internet service providers again, but just be patient and if you don't get a response then just resend your email or try calling instead of emailing. Actually this doc probably is one of the most accessible ones hubby has ever dealt with.
Glad you felt that the appointment went well. I do think it is very important to find a doc you can relate to on a personal level.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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