His Family Doctor prescribed him a 3 week course of Pills, but he does not know what to do...
Any Advice ?
[ 28. December 2008, 08:47 AM: Message edited by: eric555 ]
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
| IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Which type of test showed positive? Was it CDC positive under two teir? Why did he do the test?
Lyme can be insidious. The symptoms can slowly progress and tey may not be noticalbe at the earlier stages. Often taking the ABX will intensify the symptoms as more bacteria fragements are generated resulting in an intensified set of symptoms.
I would take the drugs and see what happens. There is not a lot of risk involved.
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
posted
he went to get tested due to just being always tired, and so i advised him to check his blood.
i believe as he told me that he showed only one strain to be positive,
his family doc took the blood and sent them over to mdl labs in nj.
ofcourse he does not recall ever being bitten by a tick but has had some types of rashes over the years.
what do you think ?
i dont know what advice to give him at this point...
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
If he is fatigued, he has symptoms. I'll bet he has a lot of other symptoms that he is just thinking are random. It wasn't until I had a list of symptoms that I realized just how many I had.
My advice, find a LLMD for him to see and get treated. In the meantime, if the test says positive, his doctor should be prescribing abx!
Have you got a copy of Dr. B's guidelines for treatment of Lyme and other Tick Borne Diseases? I keep one on my computer for quick reference.
Send him a copy of it to read and refer to. You can find it at www.ilads.org.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
adamm
Unregistered
posted
Yeah, does he really have an idea of all of the different types of symptoms Lyme can cause? It can mimic just about any illness.
IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Such a tough call honestly. It's like playing Russian Roulette. It's so hard to give advice in that situation.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
i have attempted to explain all about the other infections but he already laughed at me and said i spend too much time here online.
he trusts his family doc who says that in 3 weeks time the disease will go away, that is if he has one to begin with, again his doc told him this as he explained that to me.
since he thinks he has no symptoms its hard to convince him otherwise.
i am afraid to tell him to start doing anything other than finding an actual LLMD in the Philadelphia area and have already given him the list.
hes not making any moneys now and has no insurance coverage, so he is in a really tough spot.
hope he does not dismiss that seeing LLMD is very essential.
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
| IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
I would take the drugs and see what happens. It is possible (and has been reported by quite a few) that you can have been exposed to Lyme and be asymptomatic, IGg will light up in that case. It is also possible that the test is simply wrong. If it was a WB, bands can and have come and gone. I have seen it and I think it is more an issue of interpretation rather than actual antibodies being observed.
If he goes to an LLMD the first thing that he would do is retest anyway, He has to.... How can someone be treated that has no symptoms? How do you gauge treatment progress? How do you justify this to the state medical board? LLMDS have enough trouble treating people who are visibly sick, never mind treating someone with no symptoms.
Conclusion, If it were me or a member of my family...
Save the money, take the drugs and retest if you really want to. If things start to appear during the treatment then reconsider the options.
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
posted
If this had happened to a dog or cat, my vet would treat automatically (and the cat or dog couldn't say they had symptoms).
This vet is probably an exception but he is incredibly Lyme Literate and gave a great talk on Lyme with a Lyme-knowledgeable MD.
I agree the friend should be given the longest symptom list you can find. Most of us can look back now, after diagnosis, and say, "Oh! That was probably Lyme too, way back then."
Posts: 422 | From Luck home | Registered: Sep 2005
| IP: Logged |
posted
WE had something like that happen to us. My son was tested at igenex last year, and he got igg positive. NO symptoms at all, I just tested for the heck of it. I called 3 docs, one of which is Dr. Jones in Conn., amd my llmd , who worked for "the Dr. B" for over 10 years. Both said the same thing, No symptoms, DO NOT TREAT, PERIOD. Many patients came to them with positive test, no symptoms, and they said, no abx. My son just finished a 10 day course of biaxin for a sinus infection, and he is fine. I has Lyme for 8 years with no symptoms, and I took abx on and off for other infections. After I got the symptoms, then I began treatment full force.
Posts: 455 | From Maryland | Registered: Jul 2007
| IP: Logged |
WildCondor
Unregistered
posted
"Always being tired" IS a symptom, the # 1 symptom of Lyme. treat it, and make sure it's treated RIGHT, with the proper doses! Doxy should be 400 mg/day, not 200 mg. Make sure they are tested for co-infections, and that the Lyme treatment is strong enough for long enough, and get your friend on here so we can help educate him/her.
IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
After conveying a few words from replies here (such as WildCondor's ""Always being tired" IS a symptom, the # 1 symptom of Lyme") . . .
I advise NOT giving him advice. Give him the literature.
Often, friends and family do not listen to those close to them. A few books - the film - a few articles is the best approach, especially if that friend is judgmental of your experience with this, as is the case.
Do not even try to defend yourself. It will get mixed up with his fear, or even disgust, of illness in general. Your experience will get mixed up with his.
Go back over the excellent resources you've been directed to, download the most impressive articles and links and give him that set.
You might order a copy of "Under Our Skin" and have it mailed to him. A $40 gift will say much more than you ever can if he won't listen.
Send a copy of books such as "Cure Unknown" and "The Lyme Disease Solution" as well.
You might mail him your copies with a return mailer so he can borrow for a week or two.
Include one page with link to ILADS, LDA, links to the Savely article, Nicoloson's articles on chronic lyme - these are all the same things you got when you first arrived her.
If this were myself, based on past experience and my very limited knowledge, I would remove myself as the "authority" figure and be sure he has others - from the support group - to answer questions. I'd be sure he has at least one page of links, two books and the film.
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.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
In addition to all the other great replies and links from others, these are just a few suggestions for what can be in a basic introductory packet for your friend's personal research.
Again, and experience has proved this over and over for myself, it is wise to remove yourself from the position of "teacher" or "guide" - - the experts' voices should be the ones he hears.
-
[ 27. December 2008, 08:13 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Eric,
In reading back over your notes, I see you said " . . .showed only one strain to be positive . . ."
ANY strain of borrelia can cause serious illness.
Yet, did you mean "band" rather than "strain"?
Still, as others point out - as does research - even one band positive can be a strong indicator in the presence of symptoms/history.
Of course, directing him to a LLMD for a complete work-up is best. I do hope he will see out expert consult. Perhaps, after reading some of the literature, he will be able to share the situation with family or others who may be able to offer some support.
And, after he has read the introductory literature, you may want to send him a copy of both Buhner and Zhang's books then, too. (Or the support group may have copies to loan.)
If, after asking for family support, he still has no way to see a doctor due to finances, there are still some very positive steps that he can take. The support group leader can help there.
posted
How old is your friend? Age does play a role, as do state of nutrition and lifestyle. Someone who has a positive test and not a multitude of symptoms one day may develop many symptoms when they put the right stress load on the body or when they hit the magic #. For many this # is 40, for some it is higher, for some, lower.
Treatment with antibiotics as a prophylaxis is foolhardy though, a better approach would be a solid nutritional and lifestyle eval, and appropriate modifications to minimize load factors and maximize the individuals compensatory system.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
| IP: Logged |
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Eric, your friend may not believe he has symptoms because he may not know all the different symptoms of this disease.
I agree with Lou, give him literature. Let him read about the various symptoms. He may have experienced symptoms you aren't aware of.
He may not be ready to hear any of this, but accurate literature will plant the seed in his mind that Lyme could possibly explain the things he's experiencing.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
If his fatigue was bad enough that he went to the doctor, he is symptomatic.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
How about giving your friend a comprehensive Lyme disease symptom list.
I had symptoms that I put off as "normal" due to age or stress,
That were directly related to Lyme.
I was in shock to discover I had checked off 54 out of 75 symptoms.
My LLMD does not treat based on a Western Blot.
He wants symptoms.
He will at times do an antibiotic challenge to see if you herx.
Or show more symptoms.
Then treatment begins.
Just a thought.
My husband was in the mode of "Oh I am just tired" despite the Igenex results.
His antibiotic challenge of 1500mg of flagyl on one day,
Followed by 1500mg of biaxin on the second day almost did him in.
It was an awakening to him of sorts.
Your friend may benefit from this as well.
Three weeks won't be enough. We know that.
Problem is if that your friend doesn't wrap his mind around the complexity
And the tenacity of this bug he is not helping himself at all.
Sorry. Hard to know so much and yet not be able to help people you care about.
Good luck.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
posted
Well so I have tried to get him to persue this whole Lyme thing very seriously,
and did explain that maybe he has symptoms that hes anaware of,
as well as always being tired is one of those of my greatest symptoms for years to which unfortunately I too had paid no mind to.
He does say that his back and knees do ache at times but thats from all the hard work that he does.
but he will do his basic 3 week cycle of Antibiotics,
and if it were as serious as I make it out to be it would have been persued more seriously by his Family Doc as well as his other fellow co-workers, family and friends.
Hes one of those people where he is only sick when he totally falls off his feet I guess.
But he laughs me off by saying that I spend too much time here online and that I should throw my laptop out into the trash,
Also he says that I should stop laying in bed all day and get out and go back to work and live a normal life as I once did.
They dont believe in Lyme & Co,
they think its a rash and a few minor itchy symptoms.
I am puzzled and stunned, or maybe I too was kinda just like him prior to my case of it being shown on two lab results, and noone pushing me into all the tests except for myself and my personal recent painful and unpleasent experiences...
I assume this all goes back that the world knows nothing of this disease and its true effects.
They think its a rash from a Tic Bite and goes away with a few pills.
Oy...
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
| 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!
![[Eek!]](eek.gif)
![[Roll Eyes]](rolleyes.gif)
![[Frown]](frown.gif)
Hard to know so much and yet not be able to help people you care about.![[Smile]](smile.gif)
![[bonk]](graemlins/bonk.gif)
Printer-friendly view of this topic