I'm on my second week of a three week course of doxy (100mg 2x daily). This was prescribed by my MD. I have an HMO and am being referred to an
infectious disease doctor, but I won't see her until next Friday (the 13th).
So far I've noticed NO improvement in symptoms. I'm extremely cranky, moody, achey in most joints, can't focus or pay attention, off balance some times and I'm tired all of the time, but of course can't sleep at night when I have the opportunity to sleep.
I never thought this could happen to me. I've always been super organized with a STRONG attention to detail. I'm a bookkeeper, great with numbers . . . lately I get so confused.
I've noticed my symptoms are somewhat inconsistant . . like a smorgasbord. Today, I'll take the aches, lack of organization, and a side order of cranky. Tomorrow I'll consider the confusion lack of balance, and maybe the occasional wave of nausea.
My question is this . . . until I get to a doctor with a clue, are there any alternatives I can consider to help with some of these symptoms???
I know I'm testing the patience of my family, heck I don't even like to be around myself these days.
Any ideas or suggestions will be greatly appreciated.
Posted by Lymetoo (Member # 743) on :
You are likely "herxing"... the spirochetes are dying and as they die, they throw off toxins.
Any chance you could take a bath at night with epsom salts? It will help you detox. Take activated charcoal two hours away from meds to help detox too.
Drink lemon water as well.
Seeing an ID duck on Friday the 13th will be the biggest nightmare you've ever had!!!
Posted by lymie_in_md (Member # 14197) on :
Just to add to lymetutu's great advice, as far as the detox you might also look for apple pectin. One more thing for detox is deep breathing exercises a couple of times a day, take it slow and increase slowly over time. I usually take a deep breath hold for about 3 or 4 seconds slowly release and when you've let it out let just a little more (some extra co2 is released) hold again for a couple of seconds. Do this 4 times twice a day, after a couple of days add another cycle. The idea is to alkalize the body, the extra oxygen will do that. I don't think lyme likes oxygen. A supplement which can add more oxygen to the body is "cell food" a lumina product. http://www.nuscience.com/
There are many breathing exercises in yoga, they will help message your organs so you can detox better. You'll need to do research on this and determine which organs need detoxing. It is not a miracle cure but over time will make the journey to health easier.
The one thing that is great about breathing exercise is the price.
Posted by sixgoofykids (Member # 11141) on :
You are on a low dose of doxy for Lyme treatment. If you go to www.ilads.org you can look up treatment guidelines there. Look at Dr. B's guidelines ... he says 300-600 mg. doxy per day.
Also, an id doc will be no help. The IDSA just settled out of court with the attorney general of CT for anti-trust violations on their guidelines for treating Lyme Disease. The id docs are STILL using those guidelines until new ones come out.
You need to see a Lyme literate doc (LLMD). Post under seeking doctors to find one.
Posted by Brussels (Member # 13480) on :
If you're looking for alternatives, take a look at Buhner's herbs, search for andrographis, smilax, cats claw, eleuthero, stephania, astragalus.
Or search the Cowden protocol herbs under alinia, samento, cumanda, banderol.
Another alternative for me is frozen garlic and rizols. Teasel sometimes.
Selma
Posted by roro (Member # 13383) on :
dont even bother going to an infectious disease. he will do nothing, he will say "you don't have lyme" they only treat with a month of doxy at most
you have to find an LLMD. Lyme literate MD. they are the only ones who treat lyme.
Posted by daise (Member # 13622) on :
Hi 1rosepedal,
Sounds like you've been through a lot of pain. I hear you!
I'm sorry, but the infectious disease doctor will not help you. The dosage of doxy you are taking right now is too low a dose. Those doctors follow the IDSA Guidelines which are false.
Please go to www.ilads.org and on the left menu click "Treatment Guidelines." That takes you to TWO guidelines that are essential reading. PRINT BOTH!
One of those is the ILADS Guidelines.
You need to find your way to an LLMD (Lyme-literate MD) who follows the ILADS guidelines.
Hang-in there.
daise Posted by bettyg (Member # 6147) on :
rosepedal,
please send me a PRIVATE MESSAGE, the 2 people standing together to right of your name.
please send me the infectious drs. full name, CITY/STATE you have scheduled 6-13 appt.
THERE ARE AROUND 12 "GOOD INFECTIOUS DRS" WHO BELIEVE IN AND TREAT CHRONIC LYME!!
rest are worthless! they don't believe in CHRONIC LYME AND TREAT UNDER 30 DAYS!
Posted by CherylSue (Member # 13077) on :
Doxycycline works best at 200mg twice daily. You have to build up to it, and it may make you nauseous at first, but that will eventually go away.
I found doxy the best abx so far. Keep with it. You'll like what it does for you.
Herbal stuff (cumanda, buhner's herbs) didn't work as well. There's a lot of herxing with them, too.
Stay with high dose doxy.
CherylSue
Posted by luvs2ride (Member # 8090) on :
The truth is before you know how to treat, you have to know what to treat.
A good LLMD will test, test, test to determine what infection/s you are battling. Lyme is just one of them.
I test positive for Babs, H. Pylori, Lyme, Mycoplasmas, C. Pneumonia, EBV, QFever, Tapeworm.
For 7 mths dr had me on ammoxycillan, biaxin, prevacid, plaquenil, and a bunch of herbals for leaky gut. I was low in B-12, D, Zinc and Selinium so supplemented all of these.
She was focused on the H. Pylori which cleared quickly. Then the Babs which was more resistent. She started me on MTE9 which is an herbal IV for Babs. She said this would grab the Babs whole and remove it whole from the body so no herxing. I took 4 weekly IVs.
On 7 mths of abx, I kept consistently testing positive for Babs. Dr stopped all meds except a very low dose of Doxy (100mg Mon,Weds,Fri) This is a rheumatoid arthritis protocol aimed at mycoplasmas. Now, after just 4 weeks of the MTE9, I got my first negative Babs test. Dr says she needs two negative tests before assuming the Babs is gone. Blood has been drawn and I get the results in a couple of weeks.
I asked if I could increase the doxy while waiting and she said No. Not until we get the test results back to see which infection you are dealing with now.
If my Babs remains negative, I will become the biggest believer in the MTEs. There are different formulas for different illnesses. For instance, MTE13 removes mold. I did not herx while on the IVs and in fact, felt great.
But, I'm getting way off topic. The main thing I wanted to show is that you need a doctor working hard to identify the triggers and treat all of them. It is not just a simple matter of taking lots of doxy.
You also have to deal with the damage to your body which can't be done with antibiotics.
Luvs
Posted by bettyg (Member # 6147) on :
rose,
this infectious dr. is NOT ON OUR GOOD LLMD LIST! ***********************************************
i'm sending private message to you replying to one you sent me just now ... giving you more options.
i personally would CANCEL infectious dr. appt. ***********************************************
and try 1 or both of others i'm sending you for that city!!
have your out of pocket money go for a GOOD LLMD vs. someone who is NOT and doesn't have your best interests in getting better at heart!
Posted by METALLlC BLUE (Member # 6628) on :
If you need help, PM me. I second the activated charcoal. You can buy it from your local pharmacy store. The concept is simple. Antibiotic cause an increase in symptoms when killing Lyme disease, both as a result of toxins released from the dying bacterium and the antigens of the bacterium antagonizing the immune system.
Activated charcoal helps with the toxin load, the immune system and body will take care of the rest. This will decrease symptoms.
You need a physician who specializes in Lyme Disease. An infectious disease specialist isn't necessarily a Lyme Disease specialist just because Lyme Disease happens to be an infectious disease. Some ID's specialize in AIDS, some in Tuberculosis, some in West Nile, Gult War etc.
You need a "Lyme Disease" specialist, and we can provide you with plenty of names and resources to help you get the appropriate treatment.
With your current symptoms, it's going to be a long recovery process. You'll need long term care with antibiotic therapy I suspect.
Posted by lpkayak (Member # 5230) on :
my 22 lb schnauzer takes that dose of doxy...i'm guessing you weigh more than 22 lbs
the people who are saying you need to educate yourself and get to a good llmd are right.
read the ilads.org site
don't get distracted by all the info here---a lot of this is for chronic lymies
what you do now...in the beginning ...will effect the rest of your life
supplements are useful for certain things...but they don't replace early, appropriate treatment with antibiotics-unless you are very allergic to abx...then you have to deal with it differently
good luck
Posted by 1rosepedal (Member # 15653) on :
Thank you all so much for your many replies to my dilema.
Yesterday morning I finished my low dose of doxy.
I purchased some alternative herbal supplements to help until I see a doc later this week.
I have also made an appt with a LLMD for later in the month.
I'm really hoping this is caught early enough to reverse the symptoms I am dealing with.
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