posted
Hey all, This is my first time starting a post (formerly a major lurker) and could really use some of yall's hard earned wisdom. Little background: sick for 5 years, gone through the gauntlet of diagnoses--now stuck with chronic fatigue syndrome. Had a positive IgM Western blot through IgeneX (even by CDC standards!) and live in endemic PA woods area.
So, for the past two months have been on 400mg doxy, 1000mg flagyl 7 days out of month, samento, cumanda, probiotics, and have followed a low-carb diet for years. Needless to say, I am not making much progress--actually, I don't feel any better (and I don't think I have herxed). The only difference in my health is that I have started catching colds again--immune system working again?
Anyway, my current doc (from the fibro and fatigue center) told me yesterday that lyme is not my biggest problem and was pushing for hormone treatment, SSRIs, and other pricey supplements--all of which I feel I have given a fair chance in past 5 years. He was adamant that I will NOT get better just on a lyme protocol and that many of my symptoms cannot be blamed on lyme; I feel entirely deflated. I do have an appt with an LLMD in a few weeks--so maybe he will tell me differently.
Ok, here are my questions. How long should I be on a lyme protocol with no results? How will I know if this is not working? Can symptoms such as anxiety and fatigue dominate as lyme symptoms? Sorry this is so lengthy--feel free to answer any or all of my hodgepodge of questions. Cheers, Carrie
Posts: 13 | From Downingtown, PA, USA | Registered: Jan 2003
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Welcome Frecker777
hang in there your appointment in two weeks with a LLD may make a world of difference.
With lyme there are so many factors,I am sure alot brighter minds will post after me.But from what I have learned there are so many strains of BB that just taking ONE abx no matter how long doesn't tell all.
When I had a major relaspe three years ago,I was only taking doxy too.
It wasn't untill I found a good LLD that tryed a rotation of many different abx's & found some that worked was key to some progress.
Take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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quote:Originally posted by Frecker777: How long should I be on a lyme protocol with no results? How will I know if this is not working? Can symptoms such as anxiety and fatigue dominate as lyme symptoms?
Question 1 At least a year. Question 2 If you have NO herx and NO improvement. Question 3 I would say Yes, it's possible.
I'd be willing to bet that you have some co-infections, specifically babesia, as it causes severe fatigue. You really do need an LLMD here, because your current dr probably knows very little about Lyme and even less about the co-infections and HOW TO TREAT THEM.
When you stated that you take flagyl and doxy, did you mean you only take flagyl for 7 days each month, or both?
If you are a large person, you might need more doxy than that. Most LLMD's only use doxy for recent tick bites, not chronic lyme. Or if they use it, they don't have patients stay on it for more than about 2 months. [I'm generalizing here.]
So have you not herxed at all?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good evening Carrie,
I'm glad you decided to post your questions. WELCOME!
I agree with Dana, two weeks may make a world of difference in disposition once you speak with someone much more knowledgeable.
2 months is a very short time to expect any sort of results, especially since you have been ill for 5 years or more. No one can tell you exactly how long treatment will take for you, but you must have patience and accept that this may be a long journey.
Yes, anxiety and fatigue are prominent symptoms for many, especially fatigue while on Doxy.
My best, melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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quote:Originally posted by Frecker777: Hey all, Anyway, my current doc (from the fibro and fatigue center) told me yesterday that lyme is not my biggest problem and was pushing for hormone treatment, SSRIs, and other pricey supplements--all of which I feel I have given a fair chance in past 5 years. He was adamant that I will NOT get better just on a lyme protocol and that many of my symptoms cannot be blamed on lyme; I feel entirely deflated. I do have an appt with an LLMD in a few weeks--so maybe he will tell me differently.
Ok, here are my questions. How long should I be on a lyme protocol with no results? How will I know if this is not working? Can symptoms such as anxiety and fatigue dominate as lyme symptoms? Sorry this is so lengthy--feel free to answer any or all of my hodgepodge of questions. Cheers, Carrie
Hi Carrie! My name is Barbara and you set off some amazing showers of fireworks. The reason I personally say this. Is because I deal with a lot of chronic pain doctors persay that don't really believe in the Lyme stuff enough to give it the right respect. Treating us with SSRI aren't always the answer it medicates us so we don't think like we should. It makes us sleepy, calms us down. Been threw the gambit and I also seen what most of them have done to my friends. I would wait to see what your LLMD doctor does before Hi Carrie! My name is Barbara and you set off some amazing showers of fireworks. The reason I personally say this. Is because I deal with alot of chronic pain doctors persay that don't really believe in the Lyme stuff enough to give it the right respect. Treating us with SSRI aren't always the answer it medicates us so we don't think like we should. It makes us sleepy, calms us down. Been threw the gambit and also seen what most of them have done to my friends. I would wait to see your LLMD doctor before worry about your other doctor. He is too pressed in seeing you giving up on your LLMD. I have Chronic pain issue outside of My lyme diease. I can't spell so forgive me. I also have Babesisa which makes me very fatigued. Ask your doctor for Provigal it helps with the fatigue. One thing I learned when I am on a good course of antiboditics I do not need my pain mediciations because my pain is gone.you worry about your other doctor. He is too pressed in seeing you giving up on your LLMD. I have Chronic pain issue outside of My lyme disease. I can't spell so forgive me. I also have Babesisa which makes me very fatigued. Ask your doctor for Provigal it helps with the fatigue. One thing I learned when I am on a good course of antibiotics I do not need my pain medications because my pain is gone. But now I am going threw a herxing and my pain is back. I thought I was cured and now I have been diagnosed with another co infection Bartonella. Here we go again. Good luck Carrie, never faulter believe in a good LLMD
Posts: 27 | From Halethorpe, MD | Registered: Jul 2003
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JimBoB
Unregistered
posted
Hi Carrie: ALL of the answers above are good. As many stated, it is hard to tell exactly WHAT will work the best with EACH individual.
We are ALL learning NEW things all the time.
One thing that IS a fact though, is that Not ALL people respond to antibiotics. And MANY that do, relapse later. ONE thing to do, would be some alternative treatments.
I was NEVER into herbs for any kind of treatment, but am VERY sold on them now, since they have been of so much help to me. BUT let me tell you, I am learning every day also, on what will or will not work for me.
I am beginning to think this whole Lyme/Coinfection thing is a by guess and by gosh sort of thing. Kind of like electricity; More than ONE theory. For some, one thing will work good and for another that same thing will be very bad.
BUT I am only a Doctor of Motors, and I do not know how to get you purring good. So take all you read and hear with a grain of salt, as it were, and definitely TRY NEW and DIFFERENT things when something else is NOT working for "YOU".
I have just ordered three new books, but I am thinking that the Healing Lyme book by Stephen Buhner is STILL going to be the best thing out there at THIS time.
posted
Thanks to all that replied--nice to know others can commiserate. I will certainly lay all this on my llmd!
Lymetoo: I take doxy everyday and pulse the Flagyl only 7 days out of the month per doctor's orders. Although, when on the Flagyl I get really achy and tired--so maybe that is a good sign. And no, I am not a large person--24 year old girl about 5'5'', so is 400mg of doxy enough? How will I know if I herx?
Cave76: I agree that things like thyroid can have a huge effect on health, but I agree these are secondary problems--caused from a much bigger problem (most likely lyme). With that said, my TSH most recently tested at 1.99 (good range) and the doc still wanted to put me on thyroid meds. I have tried them in the past and they give me insomnia and heart palps--not fun. I am not willing to take SSRIs, so that will not even be an option for me.
Cheers, Carrie
Posts: 13 | From Downingtown, PA, USA | Registered: Jan 2003
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Frecker777
I believe all of us who become symptomatic to the Lyme bacteria bring other issues to the table and the whole person must be looked at, not just the current symptoms.
I also believe antibiotics alone cannot completely heal us from lyme as the bacteria can so easily mutate to avoid and become immune to antibiotics. This is why such a wide array of antibiotics must be used.
Furthermore, I am working with a medical doctor who is very lyme literate and he does not feel antibiotics are the answer at all. He is treating me homeopathically and he is treating other bacteria, fungi and viral infections he found in me as well.
Under his care, I am getting well and I am not having to worry about or deal with side effects. My initial herxing reaction leaves no doubt the remedies were doing their job.
I believe I have had lyme for 10 yrs. I am in my 5th month of treatment and would estimate I am 90-95% better.
I'm not sure where in PA you are, but if you are close to Rockville, MD and are interested in an alternative approach administered by a lyme literate medical doctor, then send me a private message and I will happily give you his name and number.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I have just ordered three new books, but I am thinking that the Healing Lyme book by Stephen Buhner is STILL going to be the best thing out there at THIS time.
My LLMD recommends Buhner's Healing Lyme book as the best.
Ewok
Posts: 33 | From Florida | Registered: Nov 2005
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My girlfriend is a patient of one of the top LLMD's in the world (in CT). The latest news (he said) is that not everyone has to herx.
True, I got better on abx but it was a slow process no major herxing I am still not 100% after 2 years. Probably not even 80% on most days. I think the degree of herxing may have to do with how long you have had Lyme. I feel that I might have depleted the usefulness of the oral abx's and I am looking at alternative methods to try with abx on the next visit to the LLMD will probably try IM.
Posts: 649 | From United States | Registered: Dec 2003
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My LLMD says it is not unusual to have long periods with no apparent improvement. He says you need to give a new drug at least 3 months to see if it seems to be working. I've read reports of improvement suddenly starting around the 90 day mark.
Cold like symptoms may be herx symptoms.
hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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