posted
Hello, I was on this site alot months ago but since have been steered once again in the direction that my husband does not have lyme. All LLMD's say yes (but solely on a clinical diagnosis), the other ton of docs say no.
My husband cannot tolerate antibiotics, it sent him to the hospital 4 times already with pancreatitis.
So, we just don't know. He has had such severe neck and back pain it is going on a year now!
We went to a pain management doctor and he is going in about 3 hrs. to get steroid injections, a first course in his neck.
I am terrified, but on the flip side I feel like this could be a definite diagnosis of whether it's Lyme or now. If it is, we all know what will happen.. if it's not he will get better...
any advice/comments?
Thanks guys!
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
| IP: Logged |
posted
Yes, 2 western blots from Igenex - 1 year apart. pretty much same results: IGM Negative 31+ 41 IND IGG Positive/Negative 25-25 ++, 31 +, 41 ++, 45+, 58+, 39 IND, 83-93 IND
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
| IP: Logged |
posted
Does anyone know just how long it will take for him to either get worse or start to feel better? I wonder if it happens right away.
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I know an older woman (in her 70s) who has had steroid injections in her back and also in her ribs for rib soreness. The rib injections she has been having for some time, evidently.
She never had some terrible reaction to the steroids.
I really believe she has lyme because she gets the swollen knee (doctor keeps draining it), burning feet at night (wakes her up, terrible), had an episode of temporary blindness, has the rib soreness, has to eat like a celiac even though she is not a true celiac according to the docs, and numerous other lyme symptoms--too numerous to name. There are lots of ticks in her yard.
She has never gone to a lyme doc to get diagnosed.
Telling you this because you may not see a dramatic worsening of lyme symptoms after the steroid injections. This lady doesn't get this.
But, she does agree with me that the steroids just help her temporarily and ultimately she gets worse.
I haven't seen or heard from her now for many months. Seems like she has gotten worse and is staying home.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
That IS A positive test, along with symptoms. But, still important to consider regarding the challenging of testing and the CDC criteria. Just because a test is CDC negative that does not mean it is a negative test. THAT IS A POSITIVE TEST.
Now, I'm not saying that there may not be something structural that is causing the neck pain but I am saying that your husband has the classic signs of lyme and a steroid shot could be the start of the end his life. I've been there.
When Worse if he gets the shot? Well, he may get lucky. But not likely.
He could get worse immediately and then spiral down. Experienced and educated LLMDs assessed your husband and determined that he has lyme.
He does have a positive test, just not by CDC criteria. Neck pain is classic for lyme. He HAS lyme. Steroid shots WILL make him worse and it could be impossible to then treat.
Now, I cannot tell whether he got the shot or not yet.
I assume HE is the one deciding this. But are YOU ready to have him bed-ridden? Is he?
Mood changes are likely too. Steroid shots caused huge swells of depression and suicidal impulses (before I knew I had lyme and 2 other tick-borne infections).
I was bed-ridden for a full year, could not walk or talk. My bladder often failed. I fell a lot, seizures developed that have never stopped. I had to stop driving, developed severe sound sensitivity.
Please, both of you, read the links below. And if antibiotics make him worse, that his another validation of lyme: it's called the herxheimer reaction.
There are other ways, going slower, adding specific support - or even going with alternative treatments. Lots of links to follow.
If you follow those who are not educated about lyme, it will lead to pain and horror. ILADS-educated doctors are the ones who are educated. The art of the clinical diagnosis has saved many live. But, again, that test IS positive.
Good luck. -
[ 10-21-2010, 01:46 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
From: Lyme Disease 1991: Patient/Physician Perspectives from the U.S. and Canada - Lora Mermin, editor
by John Drulle, M.D.
Excerpts:
. . . "Steroid Disaster" is a term coined by the pioneer of Lyme Treatment, Dr. Burrascano (see link at bottom of page).
Corticosteroids are immune suppressants, the last thing a Lyme patient needs is to lower immunity.
Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants .
�� Corticosteroids can last in the body for months, usually around 6 months. �� In many bacterial infections such as LD, damage can be done.
Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.
It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.
Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix! . . .
. . . Dr. Burrascano makes it clear in his treatment guidelines that steroid treatment is detrimental, these are excerpts from his guidelines:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressants medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressants medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids."
An easy explanation. Your immune system are the "soldiers" of your body constantly standing by to attack any foreign invader.
When an immunosuppressant is used, it is like killing off or knocking out most of your "soldiers", now your body is open to all foreign invasion and while your immune system is knocked out, those invaders can go anywhere, your heart, liver, brain - everywhere.
. . . More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids. . . .
From page 12:
. . . More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants. . . .
Page 20:
����. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example). ����
-
[ 10-21-2010, 02:52 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
quote:Originally posted by sandyk: Yes, 2 western blots from Igenex - 1 year apart. pretty much same results: IGM Negative 31+ 41 IND IGG Positive/Negative 25-25 ++, 31 +, 41 ++, 45+, 58+, 39 IND, 83-93 IND
VERY positive in my book! What do you mean by "positive/negative"???
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For anyone with strong reactions to Rx, consider:
--------------- "Herx 101" ---------------
Lyme is caused by the gram-negative bacteria, BORRELIA b. - that is what is known as a SPIROCHETE, a cork-screw shaped bacteria that can sort of spring where ever it wants, not needed the blood stream for transport.
Spirochetes are particularly rough bacteria and they can take many forms to evade detection and resist treatment.
When spirochetes get irritated they emit toxins. To begin with, Borrelia b. is a very toxic infection. But irritate it and it spews forth even more toxic junk into our bodies.
So, our bodies are loaded with toxins and our liver and kidneys are overwhelmed. One reason why LIVER SUPPORT is vital to treatment.
To spirochetes, irritation to them can be nearly anything. It can be strong medicine, too much activity, too much heat, too much noise or light, etc.
That is why lyme patients feel so awful so much of the time. Even a little vibration will irritate spirochetes. Too much heat, too much movement.
Still the herxheimer reaction - from "chemical assault" (even if from a strong herb) - is very real.
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]
The porphyria thread highlights the importance of support supplements to help manage a herx and ensure that the liver and other organs are supported.
Alternative paths that still address lyme head-on: Many complementary methods do use antibiotics, but with specific support measures. Others use very specifics supplements.
Topic: How to find an ILADS-educated LL ND (naturopathic doctor), acupuncturist, etc.
Includes how to find an ILADS-educated LL ND, an Acupuncturist, a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, etc.
Includes many articles and books on complementary / integrative methods - & RIFE links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
That's what the bloodwork says: Oh.. I see it's IGENEX - Positive CDC - Negative
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Has he been assessed Chiari by an expert in that field ? It requires a very specific way of imaging that most doctors do not follow. A regular neck MRI or CT is not adequate.
Now, it is clear that your husband has lyme and lyme meningitis and neck pain are classic symptoms. Still, in addition, Chiari should be considered, and either ruled out or addressed.
Chiari Malformation (Arnold-Chiari) is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms.
-----------
The C & S Patient Education Foundation, known informally as Conquer Chiari, is a 501(c)(3) public charity dedicated to improving the experiences and outcomes of Chiari and syringomyelia patients through education, awareness, and research.
The Conquer Chiari website is the single most comprehensive source of information available about Chiari Malformation and related topics. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sandy,
You said:
That's what the bloodwork says: Oh.. I see it's IGENEX - Positive CDC - Negative
--------------------
Yes, that is a positive test. Be sure to read the 27 Reasons post and Dr. C's explanations above - there are many more articles explaining the CDC and IDSA and how they can put a lyme patient into a grave. Do you need more articles by researchers?
Is it too late to stop that steroid shot? -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
oh boy.. he is in there right now.. i am in the waiting room. all i can do is pray now that we didnt make the wrong decision. 4 years 35 doctors and we just cant follow the regular abx treatment because of his pancreas. he was desperate for relief so here we are. i will be sure to post back as soon as we know the outcome of this. thank you everyone for the info i really appreciate it be in touch soon i will post with the same subject
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I am not a health professional. However, here is what I suggest:
Stop on the way home and get:
� OLE and ALLICIN. Can he take Olive Leaf Extract? Allicin (or Freeze dried garlic)?
� PROBIOTICSs, too. Taken at a different time.
� ADRENAL SUPPORT A basic adrenal support would be vital, too, as the steroid shot can adversely affect adrenal function.
I would get on those ASAP. And then call and get in to see a LLMD or LL ND who can have a better approach. I know he's been working on this a long time. But, I guarantee you that the infection must be addressed AND that there is a good ILADS-educated doctor, somewhere, who can help him find a treatment plan that will work for him, and with his body.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i would stay away from any steroids, inhalers, etc. there's just too much of a risk.
you could try buhner's or cowden. there's plenty of information on the web about those.
also that diflucan or schardt protocol might work, but getting a doctor to do it may be another story.
i wish you well.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
posted
Regarding Chiari Malformation; I am unfortuately a bit of an expert in this condition.
I have chiari malformation and it does not require any special imaging beyond an MRI and an CINE Flow to diagnose. A standard MRI of the cervical and brain is what is used to diagnose.
Some doctors will do an MRI w/ contrast to see if a syrinx has developed as a result of the blocked CSF flow.
An MRI of the cervical and brain will show whether or not the cerebellar tonsils herniate through the forum magnum. A CINE Flow will show whether the CSF flow is blocked as a result of the herniation and this is what typically determines if one is a candidate for surgery.
This is the standand protocol for diagnosing chiari malformation.
One of the main reasons that chiari malformation is "missed" on an MRI is not because it will not show the herniation but because most radiologists are trained to only diagnose cm if the herniation is 5mm or more (this measurement is an old standard for diagnosing).
WHen in fact one could have a herniation less then 5mm and still be symptomatic with restriced CSF flow but fail to get a proper diagnosis. This is why seeing a neuosurgeon who specializes in cm is critical for proper diagnosis.
The goal of surgery is to help restore the flow of CSF.
I recently underwent brain and neck surgery to correcet my malformation and as a result of surgical complications had to go on 4 months of steroids.
Thing to remember with steroids is that they can also MASK infection - which they did in my case and now that I am off steroids my lyme symptoms are returning. My guess is the lyme was with me the entire time but was masked by the steriods.
If you need more information on chiari the best resource is asap.org.
Posts: 376 | From New Jersey | Registered: Jun 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- trigal2,
Thanks so much for the clarification that it is more the education of the doctor who is reviewing the images, and how current they are, rather than the image itself.
I was on a site for ears just now and happened upon this, also of interest: -------------------------
By Timothy C. Hain, MD. - November 16, 2009 Excerpt:
. . . In our otoneurology practice in Chicago, it is extremely rare for us to refer patients for surgery. Rather, we generally make arrangements to follow people on a yearly basis.
In our opinion, lumbar punctures, epidural blocks and related procedures that might cause a spinal fluid leak should be avoided whenever practical in persons with known Chiari malformation. The reason to avoid these procedures is that they may worsen the Chiari. . . .
� Physical therapy and chiropractic manipulation of the neck does not help the Chiari malformation. In fact, it may make matters worse. We have no objection to massage.
� Avoidance of activities that precipitates symptoms (such as straining, athletic activity requiring straining or involving forceful movements of the head on shoulders) is often useful.
As examples, we would suggest that persons with Chiari malformations not lift heavy weights, or play football. . . .
. . . In our opinion, the Chiari malformation is a condition that should be monitored on a once/year basis by a neurologist, and best of all, by a specialized neurologist -- an otoneurologist.
The reason for this is that while a neurosurgeon may ultimately operate on a patient with a Chiari, the huge majority of patients do not need brain surgery for the Chiari. . . .
- Full page at link above.
=================================
On the other hand, surgery REALLY helped this little boy: --------
By Andrea Canning and Mellen O�Keefe - May 10, 2008 - ABC News
Excerpt:
. . ."The brain literally is squeezed into the spinal column. What happens is you get compression, squeezing, strangulating of the brain stem, which has all the vital functions that control sleep, speech, our cranial nerves, our circulatory system, even our breathing system," Savard said. . . . -
[ 10-23-2010, 08:53 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by sandyk: Yes, 2 western blots from Igenex - 1 year apart. pretty much same results: IGM Negative 31+ 41 IND IGG Positive/Negative 25-25 ++, 31 +, 41 ++, 45+, 58+, 39 IND, 83-93 IND
This is a POSITIVE test!!!! I had a IgG positive test, too, and regular docs will tell you that it means "old Lyme". It was very active Lyme actually! And the fact that band 31 is positive means he's had it more than a year.
Get to the LLMD and whatever you do, NO STEROIDS!!!!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| 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!
Printer-friendly view of this topic