posted
You all are so helpful, I am hoping that you will be able to help me.
I have been sick since May with extreme fatigue, bladder issues, insomnia, and neurological/vision symptoms.
My PCP ordered extensive blood tests, and the only thing that came back was a positive test for Lyme. However, when it was retested, it came back negative.
He does not think I have Lyme disease and will not prescribe antibiotics. I made an appointment with a LLMD, Dr. P in CT, but that is not till the end of September.
My question to you is, how do I survive between now and then? I spend most days lying in bed or on the couch, completely drained, lacking energy, and feeling unwell.
Fortunately, I am off work for the summer, but I am becoming increasingly anxious at the thought of going back to work next month. How can I do that when I can barely get through each day doing nothing?
Any suggestions you might have will be greatly appreciated!
Posts: 7 | From CT | Registered: Jul 2008
| IP: Logged |
posted
Can you ask to be put on their cancellation list?
I would concentrate on rest, diet, vitamins and supplements. If you are in pain would your pcp rx some pain meds to keep you comfortable so you could get some sleep?
Keep reading up on lyme and co-infections. You are not alone!
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You need to figure out a way to get yourself some doxycycline. For example, take your positive lyme test to a walk-in clinic and ask for doxy. 200 mg twice per day is the minimum recommended dose by Dr. Burrascano. But, most likely, they will only give you 100 mg twice per day. If you can't negotiate 200 mg, take what you can get, then go to another walk-in clinic and see if they will do it.
The clinics will likely only give you up to a 30 days supply, maybe less, If so, you will likely have to try other clinics to get more.
The dosage comes from Burrascano's 2005 lyme treatment guidelines:
page 17: "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."
If the clinics ask why you are not asking your primary for the meds, tell them he doesn't believe the test result and you are very very sick and cannot work. Therefore, you need to see if doxy will give you any relief.
Notice what Burrascano says on p. 14: "Kill kinetics indicate that a large spike in blood and tissue levels is more effective than sustained levels, which is why with doxycycline, oral doses of 200 mg bid is more effective than 100 mg qid."
This means to me that if all you can get is 200 mg per day, it is better to take 200 mg once per day than to take 100 mg twice per day.
Docs are used to giving people doxy for lyme, so hopefully, this will work for you!
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You might ask your LLMD's office this question and if they can send you their basic treatment plan, or their patient self-care guidelines or other suggested readings.
Is there a chance you could see a LL ND (naturopathic physician) or a L. Ac. (acupuncturist)? Your LLMDs office may have some names for you.
I'd not go to anyone unless you have a referral from a lyme doctor or patient as to their knowledge, even if you are just going for support measures.
I would start - slowly - on some complementary supplements. It can't hurt and may help offset some symptoms - and get you started in the right direction. Slowly is key, still, as you don't want to upset too much.
Organic foods. Water. Massage. Rest.
[I always assume that no one smokes anymore. I also assume that most lyme patients have already figured out that alcohol is a huge detriment for now.]
Avoid all aspartame/Nutrasweet/Equal. It is toxic to neurological system, as is MSG. You would need to google MSG for all its names. If is often in canned tuna and tuna has high mercury, so that's out.
Google for the safe fish list and be sure to enjoy some wild salmon if you can. Trader Joe's has good wild salmon frozen or canned.
------
Supplements that would be most helpful until you get one of the books below might be:
Allicin, Andrographis, or Olive Leaf Extract ( OLE is easier on the system. Whichever you choose: low dose, slow)
For liver support: Milk Thistle.
For adrenal support: Ashwagandha, Siberian Ginseng or (in small amount and in a formula) Rhodiola.
Good EFA's - essential fatty acids, too. And probiotics.
Magnesium can help the liver and also calm nerves. Calcium, too. These minerals, with B-vitamins (day) and B-6 at bedtime will help with sleep. (Most multi-vitamins do not contain therapeutic forms or doses.)
Melatonin before bed may help with sleep.
-
Remember that everything you eat, drink, or take as a drug or supplement has to go through your liver and kidneys to metabolize and get out of your body.
The more natural products you can use for sleep or pain, the less stress on your liver. Lyme is very toxic, so there's already a lot of stress there.
Beyond melatonin, there are herbs such as Zizyphus, Fu Shen, Corydalis . . . most of which are used in combination formulas for proper balance.
posted
You sound like me when I was waiting for my first appt with my LLMD. I did some alternative treatments while waiting. The first was Salt/C but I did it only for 8 days. But I did notice an almost immediate change mentally. Read lymephotos.com.
I also did cat's claw. I herxed on both... that's how I knew it was Lyme.
This website taught me alot. And as mentioned above, diet and vitamins will help. There are a lot of good people here with massive amount of knowledge. Check the Alternate Treatment section, too.
Good luck and God bless.
Amy
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
| IP: Logged |
posted
PM sent with the name of another LLMD 15 minutes away from Dr. P, who usually can see new patients within 1-week (just to get you started on antibiotics quicker)
Take care Posts: 371 | From CT | Registered: Jun 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You might want to look through the NEWBIE thread by treepatrol and another one by BettyG.
Topic: BettyG's NEWBIE PACKAGE, 7.19.08, with TABLE OF CONTENTS FOR ALL!
-
Oh, and did I mention: Pace Yourself.
You will be reading a lot that may upset and scare you. You may be reading about symptoms you've had for a long time and feel anger for past or current injustices.
My advice would be to stay calm and keep your eyes on the prize. With limited energy, I'd just look ahead. And, be sure to always end a computer session looking at something that pleases you.
There are many photography or art sites. Folk Alley.com helps me keep the balance - or other music listening sites.
Laugh as best and as often as you can.
Movement, massage, and low-heat infrared saunas, help get the toxins out of the body. So, be sure to move as best you can with gentle (not aerobic) activities but also listen to your body when you need to rest for the body has repair work to attend to and can't do too much at once.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here due to space limits. Still, any LLMD you would see would know how to assess/treat if co-infections are present.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...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..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
By Lorraine Johnson, JD, MBA Executive Director, CALDA -(California Lyme Disease Association) - Updated February, 2005
EXCERPTS:
The central difficulties in the diagnosis and treatment of Lyme disease stem from the lack of sufficiently sensitive and reliable biological markers of the disease.
Without such markers, it is difficult to determine who has the disease, the effectiveness of a course of treatment, and the end point of treatment.
The ideal antibiotics, route of administration, and duration of treatment for persistent Lyme disease are not established.
No single antibiotic or combination of antibiotics appears to be capable of completely eradicating the infection, and treatment failures or relapses are reported with all current regimens, although they are less common with early aggressive treatment.[1-3]
. . .
Respect for the basic autonomy of the patient is a fundamental principle of medical ethics. Without adequate information about treatment options, their probable outcomes, and the risks and benefits associated with each, patients cannot act autonomously.
Today, however, many patients are either denied treatment by their HMO physicians who follow actuarial treatment protocols generated to keep treatment costs down, or they must find an independent physician to treat them, with the all but forgone conclusion that coverage for this treatment will be denied by their insurer based on cherry-picked (economically favorable) guidelines.
Moreover, HMO physicians generally do not advise their patients that treatment alternatives exist.
Scientific uncertainty about Lyme disease has resulted in more than one treatment approach (like prostate cancer).
We agree with the AMA, ACP and other professional medical organizations interested in promoting informed patient consent and want to make sure that:
Physicians, insurers, patients and governmental agencies are educated that two treatment approaches exist;
Physicians give patients sufficient information about treatment options to enable patients to make a meaningfully informed choice and respect the autonomy of that choice;
Insurance reimbursement be provided for treatment rendered in accordance with either standard of care; and
Government agencies provide unbiased information and remain neutral regarding both standards of care and treatment approaches.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Okay, I promise this is the last one.
-
A word about treatment with Bionic 880.
After all that I posted above, there may be a promising new treatment being done in Germany.
It does not require antibiotics (abx), in fact, for those who have used abx at length, treatment with the Bionic 880 is less effective.
Three posters here have just returned and two others have plans to go over. Some are trying to figure out how to get this here in the U.S.
So, it is worth looking at, although, it poses a dilemma. From all we've studied, lyme requires thorough treatment. It just may be that there are various ways to do that. We are all looking for safer ways that are effective.
Whether this is what we are all looking for or not, information in these links is for your consideration regarding the work of Dr. Med. Ingo Woitzel in Pforzheim, Germany.
He does give lectures there for medical groups and has treated about 2,000 lyme patients with good results, according to some reports.
This may not be the exact machine that Dr. W. uses in Germany, but it gives you an idea. There is much value, of course, to the knowledge of the doctor guiding treatment.
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
To get you started and keep your energy up try ProBoost 3 pkgs a day. I, too, have to return to work next month, and I'm hoping I have the energy to do it. Doxycycline was the best abx, but watch out for the sunburn.
CherylSue
P.S. I found the best price for ProBoost at NatureDoc.com
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Oh, regarding some of the supplements I mentioned, if one does not seem to work for you, don't push it.
I just recalled some of my reactions to melatonin. Most people can take it just fine but, for me, it really depresses the central nervous system and results in a mood drop.
If you do try it, a tiny dose (one mg.) is best at first.
=======================================
This is in the NEWBIE LINKS, but I wanted to be sure you knew about some SUCCESS STORIES:
posted
Get started on a good probiotic now to start protecting and healing your digestive tract. You could do daily yougurt with live cultures at this point but when you start antibiotics you're going need to take more than yogurt.
Posts: 984 | From San Diego | Registered: Nov 2006
| IP: Logged |
posted
find a way to get more time off because it will only get worse at first.
I tried to work while taking abx for about 1 year before I finally gave out.
I started making errors at work. After a while I was worthless there anyway.
I looked to my family and my wife for help. They all agreed to support me while I go thru treatment. I got a private insurance plan ($124/month) from Aetna.
Now I'm just waiting to get the OK to start IV rocephin. Kinda stable on Fentanyl patch, vicodin, Valium, and Abx.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
| IP: Logged |
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
You can get doxi from a travel doctor tell the you are going on a trip to Africa for 3 months - they will give you Doxi-
I think its 100mg a day is what they give you-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
| IP: Logged |
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!
![[Smile]](smile.gif)
Printer-friendly view of this topic