posted
I am kind of new in this net and i do not know if I am writing in the posting in the right place,but if any body can see this message please help me.My husband is sick with LD.He was diagnosed about three months ago in the hospital.He was on IV antibiotics for a month.He felt great but after he finished hr started to fell bad again.We went to ID doctor and he gave him another month of doxi 100ml he has another week to go and he is not feeling any better.We dont know what to do.I made an apointment with Dr.R in NY but have to wait untell January 22.It seams so long.If anybody knows a doctor in NY area please help.We have to small children who wants their father back.
Posts: 6 | From new york | Registered: Nov 2008
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Hi, Your appointment is about 5-6 weeks away, so that is not too far off. Many people have to wait several months to get in for an initial appointment. So I think it is unlikely you could get in quicker somewhere else.
Maybe talk to Dr. R's receptionist to ask to be put on a cancellation wait list.
Maybe talk with your primary to see if they will extend the doxy for the time being. Mention the possibility of co-infections, and let him/her know the continuing symptoms.
Or even see if the first treating dr. will continue the doxy for another 4 weeks because of continuing symptoms.
I dont think an emergency room would help, unless there is an evident bullseye, or he is really bad, but it is always worth a try, I guess.
Be sure he is taking daily probiotics with the meds.
Some herbal support may help, but it wont be perfect since it takes time to read, order, etc. By that time, your appointment will be here.
Some people have used olive leaf extract. Others have used Samento or Cats Claw. Others have used oregano oil. If you do a search here, you will find out some info about them. These are not cures, but they may help a little.
Hopefully someone else will have more ideas.
northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
He just went to ID doc today,he is sending him for a spinal test on Wnsday.I think he can help us.He sais that after the iv and 100ml of doxi my hosband is totaly cured. He also sais that he can be in pain for a long time but he doas not have the infection anymore.Thank you for the advice.We are on waiting list.
Posts: 6 | From new york | Registered: Nov 2008
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posted
He just went to ID doc today,he is sending him for a spinal test on Wensday.I think he cant help us.He sais that after the iv and 100ml of doxi my hosband is totaly cured. He also sais that he can be in pain for a long time but he doas not have the infection anymore.Thank you for the advice.We are on waiting list.
Posts: 6 | From new york | Registered: Nov 2008
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Beata,
Please don't put too much faith in the ID doctor. Some may know what they are doing, but the majority don't. I would definitely keep your appointment with Dr. R.
I don't know which Dr. R you are seeing since there are a couple in NY. I am seeing the one in NYC and he would definitely be worth the 6 week wait. I have an appointment with him tomorrow.
In any case, lyme isn't as easy to cure as some doctor's would like you to believe. So please stick around, keep reading and get your husband to a Lyme SPECIALIST.
Seeing Dr. R will be a very positive path to travel. Good luck.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Beata,
Ask the ID doctor how he knows for sure your husband is "cured".
One thing you and your hubby can do right now is to analyse your diet to be sure you are eating supremely healthy. Cut out sugar, processed foods, additives, preservatives. All these things clobber the immune system and make healthy people sick. Sodas are nothing but liquid poison.
No matter what his illness, a nutritious diet will improve it.
Good luck and welcome to lymenet!
-------------------- 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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I am just reading this and I see that your husband is supposed to have a lumbar puncture/ spinal tap on Wednesday by the ID doctor's orders.
If there is anyway to cancel that, I strongly urge you do so.
Spinal taps are not used to diagnose lyme. They have a very high test failure rate as the spirochete are rarely able to be captured with that kind of a test. No LLMDs would ever rely on a spinal tap.
It is expensive, can be painful and patients can have severe headaches for weeks afterward.
So, if he goes ahead - or has already by the time you read this - be sure he follow directions to a T. regarding after care.
This is vital. If they say don't move an inch for a certain number of hours. Don't. I had a friend who moved too soon and she had a migraine for a month.
If you go ahead and read this first, make sure they do this correctly - from the patient comfort standpoint.
there is no way, though, that this test is adequate. They may find borrelia but it's like fishing - as one poster here explains.
If you go fishing in a lake and you catch a certain kind of fish, yes, that proves that fish lives in the lake.
But if you go fishing and you don't catch that kind of a fish, that does not mean it is not in the lake.
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Best of luck with what ever happens. I would drop the ID doctor and wait for the LLMD appointment.
If you do go ahead with this, you need to find out which lab, exactly what test and the parameters for that. The lab will likely not do the text correctly, so you need to know exactly what they will do.
This is vital.
Again, best of luck. I know this is very hard, but many of us have not even been able to see a LLMD. Others wait, sometimes, for years. In six weeks, you can be on your way to figuring out what will be next.
Take care, now.
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[ 10. December 2008, 01:54 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Please do NOT let them do a spinal tap on your husband!!! NO!!
I would NEVER submit to one for lyme and not unless my life was in immediate danger from a life-threatening illness.
Why? They are useless for diagnosing Lyme and are very invasive and cause weeks of misery. Forget it!
The ID dr should be vacated ... you don't want him involved anymore since he has proven himself to be incompetent when it comes to Lyme disease treatment.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I would never submit to a spinal tap to diagnose LD. It is even less effective than a WB. No LLMDs would ever use this test. If it were me, I would just take the antibiotics you have and wait for your appointment with the LLMD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Like everyone else said, there's no need to have the spinal tap done, so please please cancel it!
No need to have it done because he already has a positive test!!!! What more will the spinal tap tell us? If they are doing it to look for lyme, it's overkill. You already know your hubby has lyme as he got a positive test.
Now all you need is to stay away from dumb doctors and stick with the LLMDs. Goodluck.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I tried to post this late last night but my computer was so slow and this site just would not come through.
To add to my note above - and many others:
Why lumbar puncture is not a good tool to diagnose lyme:
see the section about 1/4 of the way down the web page, with the title:
Sensitivity Limitations of Testing
Excerpt:
. . .
Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.
In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.
For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells. The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%).
An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum. The proposed index of 1.3 would be expected to have even worse sensitivity.
. . . .
=========
Oh, and whatever you do, lyme patients should avoid steroids (unless to save vision, hearing or a life - or already on them and then do not stop cold).
Steroids can make lyme blossom but many doctors don't know that. There is an article by a lyme expert to back that up, too, if you need it.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Now, this is just my suggestion for what to do in the meantime while your husband waits for the LLMD. From what I gather, it sounds like the antibiotics (abx) will soon run out.
Call the LLMD with whom you have the appt. in 6 wks. Ask to talk to the office manager. Ask if taking olive leaf extract would be okay and, if, so if it should be stopped at a particular number of days or weeks before the LLMD appt.
In addition to olive leaf extract, you might also inquire about allicin or freeze-dried garlic. There are some other herbs that are top notch, too, and could help stabilize all sorts of infections whether bacterial, viral or yeast.
I do hope your husband was - or is - taking probiotics to help prevent system yeast infection. If not, be sure to get some.
I will post a few articles explaining why the ID doctor cannot help you. He is a member of a group called the IDSA and they have not been properly educated about lyme. Really. Sounds unbelievable but the articles that I'll post are just the tip of it.
There are dozens and dozens of studies on lyme and other tick-borne or chronic stealth infections that the members of IDSA simply ignore.
I don't mean to get political here, but it is impossible to understand why that ID doctor cannot help you without understanding the split in the medical community.
But you need not focus on that. There are plenty of ways your husband can take care of himself so that he'll make it through the next six weeks.
Sorry to say, though, that this is harder than jumping into a graduate level course without having taken the necessary prerequisites.
I am sure everyone here will do their best to help guide you to what is most important to read first - and how best to take care of yourself - and how your husband can best take care of himself.
As for the holidays and the children, I know this is hard but you have to look ahead. Even now, as you both learn more you are being proactive. You can only do so much. This is a time to be glad for richness of spirit and strength of character. That is what will pull you through.
And that can be a shared journey will all your family. Things will be different for a while, yes. But your kids will learn lessons that will serve them for a lifetime.
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.
-=======================
AFTER reading the Savely article above this will make more sense and, sadly, shows the state of treatment:
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.
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
Nutritional Supplements in Disseminated Lyme Disease
J.J. Burrascano, Jr., MD (2008)
[Note: don't get overwhelmed by this. You might just take a look and find that the most important ones can help as you wait for the appt.
Most important are: Magnesium, fish oil, B-vitamins (best with lunch as they can be a bit stimulating with dinner) - after reading the Singleton book, these will all make more sense.]
DVD is $40. and worth every penny. It explains a lot.
====
Oh, and be sure to take some information vacations, too. Plan something enjoyable - or at least soothing - after each learning session. I find listening to a certain kind of music helps balance this out.
Also, I find that approaching like a class helps take away some of the fear factor in this.
Many have gone through this. It's just been hidden from the American scene for the most part. The experiences of all the good LLMDs and all the persistent patients will help your husband.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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If your husband's abx Rx expires soon, here are some of the things you can ask someone at your LLMD's office about as to if your husband may benefit during the 6 week wait.
These are explained in Singleton's book. If you want to read a little about their properties, in general, PubMed is a great place with medical abstracts from around the world.
While self treatment is never ideal to replace a LLMD's expertise, many doctors incorporate these measures and they can be a help to keep things steady during a wait - if the doctor is okay with it.
Again, if more testing is to be done, check about a timeline regarding any treatments leading up to the day of the appt.
posted
Beata, keebler has a lot of really good information. I agree that you should see the movie 'Under Our Skin". I don't know if it's in any other language than English but it is well worth the $34.00 plus shipping to get it.
Also, do lots of research. You are on the right track here.
Remember, your husband felt better on the antibiotics and then got sick when he stopped.
He wasn't on them long enough to effectivly kill the infection. This is because most doctors in the medical profession do not know enough about lyme disease or how to treat it.
They have to adhere to these abstract/general guidelines that don't work for most people, especially if they have a chronic case.
The general guidelines can work for people who are treated within 36-48 hours after the tick bite, but then again, it all depends on the particular patient's immune system and general health.
My friend's 64 year old dad got a tick bite in the Sierras about 5 years ago and was treated right away for one month...he has been symptom free ever since.
Unfortunatly, each person's case is different. I tested CDC positive for lyme just last year but I have had symptoms for quite a few years. On the other hand, there are some people who never even have a symptom.... others aren't so lucky.
Imagine if there were guidelines for cancer patients that said "You're only allowed 6 chemo therapy treatments and if your'e not better, that's all we will do for you". Basically, that's how the guidelines for lyme are at this time...
I know you said that you don't know who to believe anymore. The people here on these boards are living proof of this disease and how it works.
Read on and learn
find a lyme literate doctor in your area!
Blessings!
-------------------- The Lord is my strength and my song
CDC/Igenex- Positive IGG 31+/- 34+/- 41++ IGM 23-25+++ 31+ 34+/- 39+/- 41+ Posts: 50 | From San Diego | Registered: Nov 2008
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posted
A previous poster mentioned a healthy diet; that is a part of the wellness program that will bring you the best returns on your efforts, but it is not as easy as simply shopping at Whole Foods or looking for the word "organic" on products.
Any infection saps the body of vital nutrients, and lyme is a classic case of this raised exponentially.
Get your primary Dr. to test vitamin D and B12 levels and check kidney, liver and thyroid function. If any of these is off, supplementation and further inquiry into the reasons why must be initiated. Don't let them prescribe Vitamin D2 if his vitamin D is low, get vitamin D3, start at a low dose and gradually titrate up.
I agree that the spinal tap may not help elucidate things, and does have risks, but the Dr. planning it may be trying to rule something else out.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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Goodluck.
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