posted
Hi All! I feel like I have just joined a club and am the new member. I plan on posting more about myself later but would like to know how long it takes before the antibiotic(k)s start to work? I am on doxycycline 2x a day and started taking them on Friday evening. And I would also like to tahnk Lymetoo for posting the symptoms list. All I could say was oh my God, oh my God as I read through them, I have at least 26 of them and it was the first time that all my problems were seen together. And it was the first time that all my symptoms could be validated as one whole. I cried, and am crying now. The doctor said that by Monday I should be feeling better, and so far I don't feel a whole lot different and was just wondering how long it took others to feel better? Thank you.
Posts: 8 | From Rhode Island | Registered: Jun 2009
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posted
Depends on your body, how your organs can process the load and how active you are I would say. I conditioned myself on raw foods and daily exercise for the past 3 months and I can feel the abx shifting things after only 6 days. It has been nearly impossible to walk several miles a day but I did it anyways because I knew it would up my odds of seeing improvements, and it works.
I also followed several key things in the managing lyme diet like, no sugar, no alcohol, etc. Get your body in the right shape first.
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Hi T and Welcome!
Sometimes your relief is not immediate. In fact, it can be the exception. You can also feel worse before you feel better, which is known as the Herxhiemer Reaction.
The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment or rapid detoxification.
Often, with long term treatment, you will run a gammet of symptoms before you actually feel like you are improving.
Just in case you did not read the guidelines from the top lyme doc in the USA, I have attached a link for you.
Congratulations on identifying your symptoms leading to a diagnosis. Is you doctor a Lyme Literate doctor? Did he test for coinfections? How long and how much doxy did he prescribe?
It is also important to be taking supplements as well such as high culture / high strain probiotics to replace the good bacteria the antibiotics are killing off. Other good supplements incude herbal antifungals, a good multivitamin, fish oil, magnesium, B-complex etc.
Perhaps he included these with your protocol. If not, there is a wealth of information regarding probiotics and yeast prevention.
If you do a 'key word'' search at the top, you can pull up lots of good stuff. They are also noted in the attached booklet.
Lyme treatment is usually slow and long term since it is very difficult to eradicate. I am in remission and my treatment lasted 8+ months.
I consider myself quite lucky, as most folks here have had much longer treatments.
Good luck and do keep us posted. Posts: 1127 | From atlantic city, nj | Registered: May 2008
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It took a year for me to feel any better, but then I'd had Lyme for more than 42 yrs when I was dxd. You will definitely feel worse before you feel better.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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posted
Thank you for all and any advice as this is all very new to me and I am feeling a bit overwhelmed at the moment, but strangely I am also feeling relieved too.
I am not seeing a lyme doctor I went to the walk in clinic to be tested. I do not have the results back from the blood test nor do I even know what I was tested for besides 'lyme'.
This is my past 18 months in a nutshell. end Dec. '07/beginning Jan. '08 I went from having back/leg pain with clinic/doctor/physical therapy to March 9th when I was diagnosed with Shingles.
Then in either June or July, I found two very small ticks on my hip I went to my doctor got the one time dose of doxy.
Then Aug.1st I picked up a gal. of water and hurt my elbow, then in October I hurt my jaw while brushing my teeth. And amidst all these things I have also had problems with joints in my toes and hands and the pain from my elbow seemed to spread and go right from my fingers to my neck.
After I hurt my jaw I went to my pcp and he did not believe me even though my face was swollen (I have pictures) He said I looked fine and it looked no different from the other times he had seen me. He was looking right at me when he said this.
I thought I was crazy, I really thought that I was loosing my mind. I called my sister up crying and she told me to go to my friends house which is what I did. I asked her if she could see if one side of my face was swollen... she could. The doctor did tell me though to go see a dentist for my jaw, an orthopedist for my arm and a podiatrist for my foot. So I did go to the dentist and guess what? My jaw is bone against bone now. I was so excited to hear that that I called my sister and told her the 'good' news... talk about insane. That is sick!
I was happy to know that yes indeed a test was done and I wasn't crazy! I quickly switched into panic mode though as I kind of like my jaw the way that it is. And bone against bone can't be a good thing! Then I found out there is nothing that can be done to fix/help/prevent the damage. (Besides a night guard which I have but grinding my teeth at night did not cause my problem and the night guard does not help)
Around the first of December I went to see the orthopedist, who would not see me for my whole arm/neck pain just my elbow which was the only thing my doctor told him. So that is what I was to be treated for.
And the treatment was to be a cortisone shot to my elbow right then and there which I balked at as I was alone and not prepared and also did not know if that would help the whole arm pain that I was now experiencing? The other option was PT which I opted for instead.
The orthopedist gave me an appointment three weeks later on December 17th to come back and have the shot. As I was leaving I asked him if I could have a blood test for arthritis as I just felt that I was not getting any answers and maybe there was some form of arthritis causing my joint problems.
He denied me the test saying (as he escorted me to the front desk/office door) that it wouldn't make any difference in the plans for the future and that the test is not accurate anyway and that I really didn't need any extra needle pokes now did I?(out of concern for me, right?).
He left me at the desk to pay my copay and schedule my next visit and then I left and as I walked out to my car, I thought about things and was upset by how I was treated and had been treated.
I was very stressed and upset with what was happening to me but thankfully I came to the realization that either one of these two things was going to happen, 1) I was going to get better or 2) the doctor(s) would realize that something is really wrong and start to help me instead of thinking that I am 1) a hypochondriac 2) a druggie or 3) a drug dealer. So after this enlightenment I was able to mentally calm down some and just wait. Unfortunately, I am still waiting.
Then on May 5th I got another tick bite, got the doxy, and went on my way. But things were just getting worse fast to the point that around the 18th of May my knee now was hurting and swollen and then I started loosing weight, 8 lbs in 3 weeks, and feeling funky,
And then my brain, I think I now know what it would be like to have dementia. I can look at something that I know I know but I cannot figure it out, whether it is the controls on the console in my car to a restaurant menu, to words, numbers etc.
I wished the doctor at the clinic could be my pcp, he seems so genuinely concerned and approachable.
I will need a new doctor and I would think one that would take all my symptoms as a whole would be great, as on Friday, I think the lyme in me got out of control and I wrote a long `Dear John' letter to my current doctor and dropped it off after I went to the clinic.
So I am thinking that is where I will go...the needing doctor forum, but not tonight, I need to get to bed, sleep is precious these days. Another crazy thing... I found myself praying that the test would come back positive not because I need any more confirmation to believe that I have lyme but because it would be tangible proof that I am not crazy... and I like that.
Please forgive any incoherencies, I have typed this in word so there should be no typos at least except for those pesky red squiggles on every `lyme'. (Note to self... need to add lyme to the dictionary)
[ 06-15-2009, 10:09 PM: Message edited by: tokeeo ]
Posts: 8 | From Rhode Island | Registered: Jun 2009
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posted
Sorry, I caan't believe that ai didn't put this in there somewhere last night, but i am also on immunosuppressents as i have had a transplant, and I would have no idea how that would affect lyme or the test or hte treatment. I am off over to the need doctor board now...
Posts: 8 | From Rhode Island | Registered: Jun 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi Tokeeo,
Welcome!
I had undiagnosed lyme for 21 years.
I was diagnosed with fibromyalgia in 1987 which I now know was lyme.
I started treatment 4 months ago. The only improvement I've seen so far is that I'm sleeping better.
I attribute that mostly to the bioidentical hormones that my LLMD prescribed, along with sublingual melatonin.
He told me it usually takes 6-12 months to see any improvement in pain.
If you are not seeing a LLMD, chances are that your dose may not be high enough, and you probably are not on combination therapy.
Make sure you read alot about lyme from the ILADS.org site....
Immunosupressants would allow the lyme to flourish.
You also need evaluated for common associated coinfections like bartonella, babesia, ehrlichia, etc...see Dr B's paper for that info.
Most non-LLMD's will not know enough about lyme to really help you.
Oh, btw, could you please break up your posts, using spaces after every 1-2 sentences?
Many people here have neuro symptoms that make it impossible to read long paragraphs where all the words run together....thanks so much!
You will get more replies that way, since people skip posts they can't read because of their symptoms.
Hope you get the help you need soon.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
You can just go back and and edit the post and put breaks back in.
Just go back to your post up above and hit the little paper and pencil symbol(that is the edit icon) and you can go into your own post and edit it.
Hope this helps.
PS welcome to the board!
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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bettyg
Unregistered
posted
tokeo,
yes, please go back to your 1st post and start breaking up EACH of your longer paragraph posts.
i'll copy my guidelines below here again for you so they are available to use above ok ... saves me time since it's highligted right now to copy...
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
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You have asked the magic question. The time limit to feeling better with lyme is different with everyone.
I have had lyme for 20 years, and I have been treating for 8 months, with no improvement at all anywhere.
Just find a good LLMD and trust them and follow what they say. Meds are important, supplements are important, exercise helps improvement work quicker (if you can exercise) and diet is supper important.
Good luck, it is a long road, but at least you know what is wrong wtih you.
OH, I am not sure if anyone mentioned it, but if you did not have your test done through Igenex, do not be surprised if it comes back negetive.
Please find out what test they ran, the ELISA or the Western Blot. Get paper copies of your results.
The ELISA is not reliable, and even the Western Blot isn't, unless you get Igenex to run the test.
Good luck, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Hi Tokeeo, and welcome. You have the typical story of all of us Lymies. It is so hard to get diagnosed. The tests are very innaccurate. And Drs never look at all our symptoms as a whole. especially HMO's they just send you from dr to dr trying to treat symptoms instead of cause. And none of them take us seriously.
You will get responses in Seeking A Dr, and hopefully you have the money to go to a good LLMD. (Lyme Literate MD). They're the only ones who will help.
This site will help, it saved me amny a times when I was feeling really horrible. Everyone is supportive and has been through all the weirdness that lyme causes.
Here's a list of good books about lyme:
Cure Unknown, by Pamela Weintrub It's All In Your Head, by PJ Langhoff (Patients stories) Healing Lyme by Stephen Buhner The Lyme Disease Solution by Denise Lang
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
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