quote:Originally posted by mcg08002: [QB] I have been on Doxycycline for the last three weeks. It feels like I have been getting worse ever since i have been taking it. My heart hurts, and I have chest pains.
quote:Originally posted by djf2005: wow. all that advice and you go ahead anyway. lol
its going to be a long painful journey at this rate.
trust me, i was there also.
the info on this board and contained with the members therein can save you a lot of money, time, and needless suffering.
Very true.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
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posted
- You said: "I have been on Doxycycline for the last three weeks. It feels like I have been getting worse ever since i have been taking it. My heart hurts, and I have chest pains.
First, if your heart hurts and you think you need emergency medical at any time, do not hesitate in going to your doctor, Urgent Care or the Emergency Room. However, lyme can cause all sort of pain and so can the herx reaction so it's hard to tell sometimes if we need emergency care.
Until you get a LL doctor, you still have to be sure to seek emergency care if you need it. But you also need to learn how to determine, when you can, what is just part of the deal with lyme and what signals an emergency.
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** You were on doxy for the spinal tap? That will affect the results. Just keep that in mind. Very important - the results will NOT be the same as they would have been without doxycycline. **
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1) are you taking LIVER support? Milk Thistle?
2) are you taking probiotics?
3) Magnesium, Fish Oil, Turmeric/Curcumin . . . those should help relieve pain.
On MONDAY morning, can you call the LL ND in Bozemen and set an appointment?
Can you also ask her about taking Olive Leaf Extract to help prevent a candida infection that can occur from abx (antibiotics)? Probiotics can help there, of course, but I found the Olive Leaf Extract was superb in helping me avoid candida altogether when on abx.
I hope you can get the SINGLETON book soon ("The Lyme Disease Solution" http://tinyurl.com/6lq3pb ) that was in a set of links previously sent. It explains why you need all the protective and supportive measures as well as what to expect with different abx and how to handle a herxheimer reaction (herx).
MAJOR REFERENCE LIST FOR SUPPLEMENTS:
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:
Nutritional Supplements in Disseminated Lyme Disease
J.J. Burrascano, Jr., MD (2008) - Four pages
===========================
Be sure to drink lots of water, do some gentle movement &/or a warm (not hot) bath in Epson Salts. And REST. Your body will require a lot more rest for a while now.
A massage would also help. Surely there are some good Licensed Massage Therapists (LMTs) around. Maybe a massage student would charge less - it's the time of year for them to be taking their practical exams and need to clock in some hours.
Hope you feel better. Take care.
==================
To help protect your liver, be sure to avoid acetamenophen (Tylenol) as that is hard on the liver and can increase pain, actually.
The supplements listed above should help manage pain. (Magnesium, Fish oil, Turmeric / Curcumin, etc.) A good LLMD or LL ND will have more suggestions.
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.
Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver.
It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions.
Duration in syphilis is normally only a few hours but can be much longer, up to months or years, for other diseases, especially Lyme Disease. The intensity of the reaction reflects the intensity of inflammation present.
The Herxheimer reaction has shown an increase in inflammatory cytokines during the period of exacerbation, including tumor necrosis factor alpha, interleukin-6 and interleukin-8.[1][2]
The reaction is also seen in other diseases, such as borreliosis (Lyme disease[3][4] and tick-borne relapsing fever[5]), bartonellosis, brucellosis, typhoid fever, Myalgic Encephalomyelitis, and trichinellosis, Q fever, and cat scratch disease.[6][7]
Especially note herxheimer abtracts with Leptospirosis, another spirochetal infection.
==========================
The supplements suggested by Burrascano in his guidelines and by Singleton in his book are done so to help prevent and manage a herx. That is why it's so important FIRST to have a LLMD guide treatment.
It's far more complex than just taking a pill. It's nearly a full time job learning what you need to know to take care of yourself right now but, still, rest is vital.
LIVER SUPPORT is absolutely essential. And that is just the beginning.
I do hope you can see the LL ND very soon. You spoke of being able to fit an appointment into your schedule but, right now, this is priority. The sooner you get good medical guidance the better.
This is very complex and none of us can give you the proper care you need. We can offer some help - and so can the books and articles. But you need a LL doctor as soon as possible.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Your herx has some bartonella qualities to it. I did total of 4.5 mos on doxy 200 mg twice / day before moving to zithro,bactrim,flagyl pulse. The Bart herx was worse (with those meds) than anything I noted while on doxy. The doxy was definitely helpful though. What doxy dose are you taking by the way?
Slow steady improvements,
Beachinit.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Stephanie,
The DVD "UNDER OUR SKIN" should be in your hands by now. Please let me know that you received it. I hope you can watch it today.
I also hope you've been able to schedule an appt. with the LL ND or another LLMD.
Advice on viewing the film: See it as hope. Be sure to watch all the bonus features as you can see those featured who have gotten even better. There is hope.
After you watch it for yourself, then you may select a few friends or family member to watch it with you. By your having seen it first, it will help you be better able to view it with others.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hey! I got it yesterday! I just have been so busy. I did watch it with a friend of mine. I wont be able to get to an LLMD or LLND until after May when I have money.
A lot of people are telling me that LLND are witch doctors? Is this true?
Thanks so much for the movie. I have the return envelope so I will send it out Tuesday. I still need to watch the bonus stuff.
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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posted
Yeah, I am only on 200mg a day with Doxy. My infectious disease Doc did find one Co-Infection today. Ehrlicha. Does anyone else have this one?
Gah. She wont up my Doxy. I feel like I have shin spints, when I dont. I have had a sore throat for the last two months. Doc's keep saying my throat looks fine.
I am trying to get to an LLND. But I wont be able to until may, after my fiance and I get married. Were university students, and we dont have much money. On our off track (May-Sept) We both have decided to probably even FLYING to LLMD docs.
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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posted
LLNDs are Lyme-literate naturopathic doctors, meaning they take a more natural approach to medical treatment and are not so inclined to treat with drugs. You can always google for anything and learn more about the topic.
If in case you meant LLMD too, that stands for Lyme-literate medical doctor, and that's the kind of doctor we need to see, since they are experienced in recognizing and treating Lyme patients.
Be aware that there are always differing points of view on how to recover one's health.
Posts: 13171 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
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posted
- Q: " . . . A lot of people are telling me that LLND are witch doctors?" end quote.
As Robin points out, A LL ND is a Lyme Literate Naturopathic Physician. What makes them LL is further training, education. Dr. T, whom you are considering, has completed the ILADS-physician training course and is a member of ILADS.
That's important. In many states, NDs are licensed to be able to prescribe many of the same antibiotics as MDs. They also incorporate IV abx when needed.
A LLMD is a Lyme Literate Medical Doctor.
I separate the initials for clarity but to be sure, you mean a LL ND (naturopathic doctor), not a LL MD, correct?
Hmmm, let's see.
Take a look below. Sure does not look like "witch doctor" school. I wonder how well those people who think it's all smoke and mirrors would fare if they had to complete the coursework?
Four years of medical school specifically focused on learning all about the human body as well as naturopathic medicine? Intership, residency. Specialized training beyond that for some.
I've been treated by several NDs over the past 20 years and found them all excellent in their field. Now, it was only 2 years ago that I found one who was LL, so the others did not have the expertise I needed but, before I knew about lyme, several of those very find NDs literally saved my life more than once with their knowledge.
And that a far better track record than many MDs I begged for help for many years and was just turned away.
You might want to direct all those people to the links below. First, for the specific LL ND in reference:
Here you will find information on the Naturopathic Doctorate program from our School of Naturopathic Medicine, and the Master of Science in Oriental Medicine and Master of Acupuncture from our School of Classical Chinese Medicine.
We also have information on continuing education including classes and workshops . . .
Looks like you can order their curriculum (course work) brochure.
Bastyr University, located north of Seattle, Washington, is an accredited institution, internationally recognized as a pioneer in natural medicine. Bastyr is the largest university for natural health arts and sciences in the U.S., combining a multidisciplinary curriculum with leading-edge research and clinical training.
Bastyr's fully accredited naturopathic doctor (ND) program is internationally renowned for its rigorous curriculum, comprehensive clinical training and groundbreaking research.
You can explore each item on the menu to learn more about:
Now, one may still prefer a MD, one who is LL. But, I assure you that a licensed ND who has graduated from an accredited four year medical college with a doctorate degree in naturopathic medicine is not a "witch doctor" at all. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 200mg a day of Doxy is not enough to treat Ehrlichia or Lyme. How long does the ID doctor plan to treat you? When does your doxy prescription expire? Are you to go back soon ?
Since you've asked about an increase in dose and were denied, my guess is there is no plan to increase that later - otherwise the doctor would have likely told you, that, I would think.
EHRLICHIOSIS is a tick-borne rickettsial infection. The fact that they found this in your CNS (cerebral spinal fluid) AFTER you'd already been on doxy for a couple weeks seems to imply that the dose of doxy is not enough. I certainly would question the decision to stay with the same low dose.
Meningitis from either Lyme or Ehrlichioses in the CNS can be a serious matter so be sure to notify your ID doctor if you have any harsh symptoms, especially head or neck pain.
Now, the low dose doxy may be all your body can handle right now . . . but at this dose, the infections will not be effectively treated.
I'm concerned that you may be planning a wedding when planning to save your life is really what matters most right now.
There is no easy way to say this but with a wedding planned in a couple months, it's vital to know that some researchers have reason to think lyme may be transmitted sexually (as you saw in the documentary ) - and there is proof of it being passed to children during pregnancy. With the low dose you are on, if you get pregnant, lyme and ehrlichia could be passed to baby. This is where a LLMD or LL ND's knowledge would help.
With expert medical care, this can be avoided. I know money is an issue but, somehow, please be as proactive as you can.
Oh, the "skin splints" are very real - a classic sign of disseminated lyme. See this article for that description:
The sore throat that no doctor can "see" is also pretty classic. They aren't looking at the crescent arches to the side of the throat, that is likely where it's so sore. I had a sore throat for 20 years that over a dozen doctors said looked fine. They looked right past the bleeding arches on the sides, though.
It's best to hold off on kissing until your throat is no longer sore and the little medicine you are on has had some time to try to work some magic. If your fiance contracts this, he could be passing it back to you. You also wouldn't want him to get sick down the line. If your throat feels better, kissing may be fine but for sexual contact, protection would be best until you are positive that you are clear of lyme and that will likely be a while.
I know all that sounds serious but so is trying to keep one more person from getting lyme. Many couples work through this just fine and if your future husband really cares for you, he will want to do everything possible to ensure both your health and his. And visa versa. Love can handle anything. Even if you postpone, real love will survive.
Glad you got to watch "Under Our Skin" - Please do watch all the bonus footage as that is very important, too.
I hope your fiance was/will be able to watch all of it, too. It's important that he see it.
Be sure to save all those web links posted for you at your previous threads. They may be your life-line.
Take care - take really good care, okay? ===============
Be sure to keep up PROBIOTICS and MILK THISTLE, referenced in previous threads. -
[ 03-04-2010, 05:59 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
The wedding is for sure on April 30th. The ID doc talked with Nate and I today about how lyme can be congentially passed through pregnancy. We are both aware. We get married next month. Everything is going well. We are planning on visiting either an LLMD or LLND right after the honeymoon. We are both off track may -sept. That will be are only opportunity to see a LLMD or LLND
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
An ID doc said Lyme can be passed congenitally? Huh? I better see if hell has frozen over too. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm very glad that the ID doctor is at least that aware about lyme passing to babies. Most ID doctors do not know that so it is good that he is at least educated in that regard. However, the dose you are on simply is not adequate.
Is there a plan to change that later? How long will you be on the 200 mg doxy a day? Is the low dose for a reason?
Are you taking Probiotics and also Milk Thistle?
Also, be aware that birth control pills can make lyme much worse. Most good LLMDs know how to work with this.
Some antibiotics can also cancel out birth control pills - so extra protection is needed. Be sure to read the pharmacy details on each drug you ever take about this.
==================
You said that another friend saw "Under Our Skin" with you and after you watch the bonus footage you plan to mail it back.
Please keep it a couple more days so that your fiance can see it all, too. Did your parents not want to see it? Even if in another location, you can Priority Mail it to them and they can return it to me within a couple days of their having received it.
If you have any activist friends, friends you might help you locate funding, it would be good for those friends to also see this before returning it.
As well, if you have a student advisor who will see you through not just this term but those to follow, it would be good to share this with your advisor if you feel comfortable with that. That way, if you need accommodation in the future, it will be better understood.
What did you think of Mandy's choice of carrier? Pretty cool, huh? Who knows, you may have a similar "gift" from all of this, too. -
[ 03-04-2010, 07:05 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
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"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . .
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