posted
I finally got the call from Dr R (the famous Dr R!) who diagnosed me chronic neuro lyme on dec 2 and started treatment. The western blot came back and the PA gave me the results that tested negative for lyme IGG 41+ 58+ and IGM 41++ The 41 everyone is positive! and the 58 is nothing special....She told me that insurance will not cover the iv treatment with this result. I should wait to see Dr R at my feb appt to see what I want to do????????I asked aout the CD57 and she said they usually do it...so I asked if I can take it..going to labcorp next week for it just to check it out..she said to cut the abx since it is making me so weak and dizzy that it must be too strong and call her next week to see how i feel..so I should wait another two months to see if i can become rich for treatment of a disease they arenot sure I even have???My MRi had lesions and signal intensities in multiple areas so the option was MS..I am going to a neurologist to see about the ms...very upset over all this nonsense now...
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Keebler
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- annier1071 writes: --------------------
I finally got the call from Dr R (the famous Dr R!) who diagnosed me chronic neuro lyme on dec 2 and started treatment.
The western blot came back and the PA gave me the results that tested negative for lyme
IGG 41+ 58+ and IGM 41++
The 41 everyone is positive! and the 58 is nothing special....
She told me that insurance will not cover the iv treatment with this result. I should wait to see Dr R at my feb appt to see what I want to do????????
I asked aout the CD57 and she said they usually do it...so I asked if I can take it..going to labcorp next week for it just to check it out..
she said to cut the abx since it is making me so weak and dizzy that it must be too strong and call her next week to see how i feel..
so I should wait another two months to see if i can become rich for treatment of a disease they arenot sure I even have???
My MRi had lesions and signal intensities in multiple areas so the option was MS..
I am going to a neurologist to see about the ms...very upset over all this nonsense now...
(annier1071) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- your headline states: " i GUESS NOT LYME AFTER ALL?????"
That is not at all what the test says. And not at all what the person calling you said. Not at all.
A negative test cannot prove absence of lyme.
You have some positive bands. Some LLMDs consider this a positive test, if accompanied by hallmark symptoms.
It's just not CDC positive, which means nothing. It's a political tool with ridiculous criteria set by the IDSA.
� Which lab did the test?
� What day of the week was the blood sample drawn? How many days from the draw to the test? It will be on the lab form. -
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Keebler
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- Tests cannot be relied upon to diagnose lyme. Lyme is a CLINICAL diagnosis.
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
. . . 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. . . . -
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Keebler
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- � I think the CD57 is a waste of money best used for other diagnostics and support. It's not the end-all, be-all of tests by any means. If one has enough money, yes, it can offer some detail. But it's sure not fool proof.
� Going to a neurologist as this time to explore a diagnosis of "MS" is likely not at all going to work out the way you think. Not at all.
� As your stomach is bothering you from the Rx, were you also taking some support supplements and avoiding all simple sugars? That is vital. Gluten-free ? That often helps.
� � � It's important to become fully educated about lyme. There's a lot of reading to do, sadly, as it's very exhaustive. But you are going to have to read as if your life depends upon it. It does.
� Were you tested for OTHER tick-borne infections? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
This is just one example of the exact reason why people go 10 years or more before finding out that they had Lyme all along. By that time they've incurred lots more damage and the prospects for recovery are diminished. ....Such a shame.
-------------------- -chaps �Listen to the bell, Borrelia. It tolls for thee!� Posts: 631 | From A little place called, "we'll see." | Registered: Apr 2010
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posted
She did not tell you you didn't have Lyme, only that IV won't be covered. Both Lymetoo and I are well without having had IV.
She did not tell you that you won't have treatment until your Feb. appt, she said to stop the abx for the week to see what happens. My guess is that she might start you back on it or on a different one once the dizziness subsides.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
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- Ginger capsules are often a nice help with balance and stomach issues. Be very careful to enjoy delicious - yet healthful - foods now during the holidays. -
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Carol in PA
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quote:Originally posted by annier1071: ..she said to cut the abx since it is making me so weak and dizzy that it must be too strong and call her next week to see how i feel.
You may be having a Jarische-Herxheimer reaction to the antibiotic.
When the Lyme bacteria is killed, it leaves behind neurotoxins...poisons that are toxic to the nerves. These neurotoxins cause many of the Lyme symptoms.
The liver cleans these up, but it may take time. That may be why she told you to stop the antibiotic for a week.
What are you taking for liver support? You need to help the liver by providing the things it needs to make glutathione.
Fish oil, pharmaceutical quality Magnesium Undenatured whey CoEnzyme Q10
Also N-acetyl cysteine Acetyl l-carnitine Alpha lipoic acid
If you're not taking any of these, at least get started on magnesium and fish oil.
Regarding the CD57, there has been alot of discussion about this test over the last five years. It's not likely to change your treatment regimen. Some people have a normal value, but still feel like "death warmed over."
From what I've read, some LLMD's have admitted that it doesn't seem to correlate with the illness.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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MRI's showing those plaques indicate simply that... demyelination.
it does not give any cause or reason behind them. it only shows that they are there.
lyme patients also get these, and is also seen in other demyelinating diseases.
if you have the plaques as well as lyme, there is a likely chance that the plaques may disappear throughout treatment.
I know of a handful of people who have lyme and had the plaques show in their MRs. After treatment, the plaques went away.
i agree with everyone else. there has been no indication that lyme has been even closed to excluded.... not in the slightest.
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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Pinelady
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posted
You Have Lyme. That may not be all you have---but you do have it.
Think of Lyme as a Infectious organism that can shut off the immune system/let everything in/while slowly killing you.
I would stick with the treatment, keep away yeasts with meds to control, probiotics to keep the bowels in check, stay away from stuff they need to live and make you sick.
Sugars #1.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I think that the CD 57 can be a really usefull tool. I have 2 friends who have had lyme for about 10 years and they both tested NEGATIVE on the Igenex WB.
Of course their family doctors said NO lyme even though a specialist said YES lyme. When they got their CD 57 tests back and they came back LOW it said right on it that a low CD 57 is associated with lyme disease.
NOW their doctors are on board with lyme and belieive it. SO as you can see a CD 57 can be a good test to get
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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posted
Thanx all...I will take teh cd57 to check. she said to lower abx does ,not stop it..she thinks the stabbing nerve headpain last weak was a herx effect but the hardtime breathing when i take it means it is too strong so try cutting dose in half for a week..I didnt know u can get well without iv? I have been on strict diet and taking all supplements and vsl3 probiotics all along. Thank u for your support....enjoy your holidays..gonna go stay with my family for a couple days...need them right now...
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Abxnomore
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posted
I don't see where it says you don't have lyme? They told you to cut the dose of your ABX to see if it makes you feel more comfortable and call back in a week. Clearly you are responding to the ABX. If it wasn't killing off something, you would not be feeling so badly. ABX kills bacteria.
I think you have been given excellent advice by everyone already, so I won't repeat what they have already contributed. But I do sense ambivalence by the way you refer to your LLMD as "the famous".
He is not famous. He is just one of the handful of doctors who figured out very early on (he has been treating Lyme patients for, I believe, 20 years) that Lyme is a very serious illness and that needed to be treated aggressively in contrast to the IDSA guidelines and that the CDC standards of what a positive test is were too restrictive. How lucky we all are for those doctors, including Dr. R, that got the ball rolling for us and have helped saved an untold number of lives.
As to seeing a neurologist, unless it's a Lyme literate one, and there are very few but I've already give you the names, you would be wasting your time and money in my opinion. Do you want an MS diagnoses? Do you want to take meds that mask symptoms but don't treat it? With MS you gradually deteriorate over time, the meds are not curative.
You can find a ton of folks on this site who initially had an MS diagnoses before finally getting the correct Lyme diagnoses by way of their own research and determination. Lyme is a very misunderstood disease and most often misdiagnosed for MS.
Given that you are only on ABX for four weeks I really don't see a need to see a neurologist now but if you do, make sure it's a Lyme literate one and in that case you will still need a LLMD to treat you. The neurologist will diagnose you but most likely will refer you back to your LLMD for treatment with recommendations, possibly.
Hang in there, be patient and give things a chance. I don't see anything in what you wrote that says you don't have Lyme nor that your doctor's office is not providing you with good advice.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
I will hang in there...but THe office told me that the insurance will not cover the treatment. SHe also told me that results are poor for lyme but not necessarily meaning it isnt. She said some people choose to TRY treatment and see if they feel any better after it to determine if it is lyme. THen she said to wait till my feb appt with dr R to see what he thinks I should do. As for the omnicef..she said that it may have been a herx affect but the problems I was having all this week was not..it had to be a problem with the abx dosage. She said I "could" try cutting back down in half as we did in the beginning and see if in a week the dizziness eases up. I was told to call her the end of next week. I heard from those above that you can get better on oral abx? Since I cannot afford in anyway to get IV treatment without insurance helping...this would be my only shot and my stomach is horrible..it never could handle oral abx. I wish I coudl see a lyme neuro but I am sure they dont take insurance either. I will wait till i take the cd57 for results I guess.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
Carol..thank you..I have been on magnesium, COQ , B12, culturelle, fish oil, flaxseed oil, vitamin D, and now VSL3 probiotics since the start...also chlorella that someone suggested...I appreciate your helping me out..Ann
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Abxnomore
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posted
See what happens when you cut the dose to a lower one. There are always options, try to keep an open mind. There are IM shots and those won't bother your stomach. Take it step by step. If you are still feeling badly you can try to get an earlier appointment with the doctor or his PA, if you can't wait until February.
It's always possible down the line you can get a positive test to qualify you for IV and you can do IM shots in the meantime. Also, sometimes they can switch the oral ABX. Sometimes a different ABX is easier on the stomach and a person can tolerate it better.
There are also needy med programs that you can apply for that provide free IV medications, if you qualify. So take it one step at a time and see where it takes you. It's very possible that the LL neuro names I gave you may take insurance. Call both of them after the holidays and find out. Don't give up and write it off.
Think positive and enjoy your holiday.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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There are a lot of sick people out there without much of anything positive; in fact, these patients tend to be the sickest, as their "negative" tests indicate immunosuppression. For this reason, Lyme is a clinical diagnosis. If you have the symptoms, you need to treat.
Accepting a diagnosis of MS means accepting that you'll never recover from this...my doc said that someone from Mayo had told him to treat every "MS" patient for chronic Lyme, something the Mayo guy would've lost his job for doing.
The fact that you have this much-- "++" to 41 may mean something, even if the mere presence of the band doesn't-- means you really should treat. BTW--a dog only needs three positive bands, so you'd be "almost there" if you had fur and a tail. The fact that this all started after a tickbite seals the deal.
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Keebler
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posted
- annier,
Many here can't read solid blocks of type with no space between sentences and paragraphs (or thoughts). It's just harder with neurolyme due to eye and concentration challenges. So that more can read, here's your post broken up with some white space.
annier1071's last post: ----------------------
I will hang in there -- but THe office told me that the insurance will not cover the treatment.
SHe also told me that results are poor for lyme but not necessarily meaning it isnt.
She said some people choose to TRY treatment and see if they feel any better after it to determine if it is lyme.
THen she said to wait till my feb appt with dr R to see what he thinks I should do.
As for the omnicef -- she said that it may have been a herx affect but the problems I was having all this week was not -- it had to be a problem with the abx dosage. She said I "could" try cutting back down in half as we did in the beginning and see if in a week the dizziness eases up. I was told to call her the end of next week.
I heard from those above that you can get better on oral abx? Since I cannot afford in anyway to get IV treatment without insurance helping...
this would be my only shot and my stomach is horrible. . it never could handle oral abx. I wish I coudl see a lyme neuro but I am sure they dont take insurance either. I will wait till i take the cd57 for results I guess.
(annier1071) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- Sorry to say, the CD57 is not going to help very much so money is likely best used in other ways. It will not help you get insurance coverage.
Are you taking supplements to help offset the herx reaction and for liver support? Probiotics? Taking Rx with food? Eating enough good food?
Ginger capsules may be of help, too.
I know this seems insurmountable but there are many supplements that can help the stomach. Liver support is one area that helps the stomach. -
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Keebler
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Deglycyrrhizinated Licorice, also known as de-glycyrrhizinated licorice, or commonly referred to by the acronym DGL, is typically used as an herbal supplement in the treatment of gastric and duodenal ulcers. It is made from licorice from which the glycyrrhizin has been removed.
The usual dosage is 760 mg, chewed, 20 minutes before a meal. Studies of DGL in humans and animals against placebos showed that DGL significantly reduced the size of gastric ulcers and hastened healing, with 44% of the subjects obtaining complete healing, as opposed to 6% of the control group.
DGL has also been found to be an effective treatment for duodenal ulcers. In another study a group of 40 patients who had duodenal ulcers for 4�12 years were treated with 3 grams of DGL a day for 8 weeks, or 4.5 grams a day for 12 weeks, with all subjects showing vast improvement, with the higher dosage being the most significant.
An additional study shows that DGL's therapeutic effect is equal to the effect of cimetidine (Tagamet). . . .
. . . There are no known drug interactions with drugs used to treat ulcers. In Europe, South Africa, and Canada, DGL is marketed in a medicinal preparation called Caved-S. In the U.S., DGL is marketed as a herbal supplement.
DGL has also been reported to help treat aphthous ulcers (canker sores).[1]
WHAT IT DOES: Licorice root is sweet in taste and cooling in action. It detoxifies poisons from the blood and liver, and reduces general inflammation and pain.
It moistens and heals the lungs and digestive tract.
Excerpt:
. . . Almost 50 years ago, a scientist by the name of Revers reported that licorice paste reduced abdominal symptoms and caused radiographic evidence of ulcer healing.
However, about 20% of patients developed edema, headache and other symptoms due to overdose, leading to a loss of enthusiasm (Schambelan, 1994).
This led to the development of DGL (deglycyrrhizinated licorice), a form of licorice that does not contain the agents responsible for the side effects such as electrolyte changes.
The de-acidified DGL tablet or capsule form used in Europe and America is therefore devoid of any major side effects, and is effective for healing the intestinal membranes. . . .
- Full chapter at link above.
-=============
Just is just one of several similar products out there. DGL has saved the life of my stomach and can stop reflux within a minute.
If CANDIDA is causing the pain or reflux, in addition to PROBIOTICS, I have found OLE (Olive Leaf Extract) to be fabulous to help heal the gut from fungal issues. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
A Lyme neuro won't help any. So you can save your money on that one.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Abxnomore
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posted
For the most part, I agree. Thou sometimes with severe neuro symptoms that don't resolve a good LL neuro can be of help.
There' one in CT that is very good. However, if it's very early on in treatment I'm not so sure it's a good use of funds, so in that regard I agree with you.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Keebler. I am eating the lyme healthy diet and taking supplements all along. should i cancel the cd57 for this week.I thought it may settle my mind on this lyme diagnosis. i am looking for another doc now who takes isurance.I pray that people can get better on oral abx since it seems that is all that can be done now..thanx all
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Keebler
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posted
- I would never base any decision about whether to treat lyme on a CD57. Some very ill people have surprising results.
It's not going to give you the information you seek. You are looking for a "bulls eye of a test" and is not that kind of test.
You already have several red flags regarding lyme (counting tests and symptoms) that present way more detail than any CD57 ever could if the only reason you want it is for a definitive yes or no on lyme. It will not do that.
It may be able to help guide treatment but it's just one tool among many. -
[ 12-26-2010, 03:08 PM: Message edited by: Keebler ]
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Keebler
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California Lyme Disease Association (CALDA) is a non-profit corporation acting as the central voice for all tick-borne disease issues. An excellent website for anyone in any state.
==============================
This explains WHY you need an ILADS doctor: ------------------
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: -------------
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
. . . To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . . [interjection: author here is speaking of lyme that is addressed early]
. . . 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. It's important to read it in its entirety.
Coinfections also need to be considered. -
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Keebler
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DVD can be obtained through the site � or maybe borrowed from local support groups. -
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posted
Lyme disease is like : "a rock in the living room","bad credit", "a little bit pregnant"," an elephant in the garage". The person with it is the first to know. Eventually , everybody knows ! Do the easiest things first. Listen to Keebler and the crew on here, and your Doc. You can get better if you want to. I am.
Posts: 160 | From Mid-east USA | Registered: Jan 2010
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Keebler
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ILADS 2010 Conference Takeaways � by Scott Forsgren
Dr. JB shared:
. . . CD57 suppression may occur in XMRV as well as in Borrelia. (Editor's Note: There was also talk at this event of Chlamydia pneumoniae causing CD57 depression as well as a discussion of CD57 going down when one is in the midst of a Herxheimer or die-off reaction.
Thus, it seems that CD57 may not be as specific for Borrelia as may have been previously believed. That said, I do still believe it is an important marker to help provide additional insight as to whether or not someone may have Lyme disease and when they may be able to stop antibiotic therapy with a lower possibility of relapse.) . . .
Dr. RS:
. . . CD57 may go down with Herxheimer reactions. Inflammation may result in a drop in CD57 . . .
Everything You Always Wanted to Know About the CD-57 Test But Were too Sick to Ask � by GS
Excerpt:
. . . It is important to remember that the CD57 result is just a number; far more important is the patient�s clinical status. An old professor of mine used to say, �treat the patient, not the lab test!� There is still much we do not know about the CD57 marker and what other factors may lower or raise it. . . . -
[ 12-26-2010, 04:02 PM: Message edited by: Keebler ]
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Keebler
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posted
- I would money to testing for coinfections rather than to a CD57.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about: ----------
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link. -
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Hambone
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posted
This is so confusing to me. I have inflammation out the wazooooo, with elevated SED rate and elevated CRP, yet my CD-57 is also elevated in the 400's, so it's definitely not lowered by inflammation......unless.....without the inflammation that I have, my CD-57 would be even higher ????????
Good grief, could it be that my inflammation actually LOWERED it to the 400 range? Yikes!
Posts: 1142 | From South | Registered: Dec 2010
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quote:Originally posted by annier1071: should i cancel the cd57 for this week.I thought it may settle my mind on this lyme diagnosis.
I wouldn't cancel it. It may help you decide what to do. We all feel that you should TREAT.. but you still need convincing. A low CD57 may help you decide.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Abxnomore
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posted
dyna3495, excellent advice. Listen, read, listen to your doctor and give him or her a chance to see how the treatment goes. Educate oneself, research, read, read, and take action.
If one wants to get well, that's what is needed.
Annier, I doubt that you will get better advice than you have been given here on this post and on other posts. If you are unhappy with how your appointment went with your doctor you have every
right to discuss it with him during your next visit and let him know how you feel and you should do so. Sometimes there are misunderstandings, sometimes a hectic day but no matter what transpired you should discuss it with him. An experienced LLMD does not need test results to make a diagnoses.
Lyme is a clinical diagnoses meaning based on symptoms and I believe you already had a positive test before you went to him, as I recall.
I wish you luck finding an good LLMD who is a member of ILADS and follows dr. B's guidelines but it will be difficult. Your LLMD has over 20 years of experience treating Lyme and co's.
The CD57 test is not going to tell you what you are looking for. It will not tell you without a doubt that you have Lyme disease and like many on this forum you may never get a positive test that meets the CDC standards for a positive test but that does not mean that you don't have Lyme.
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Abxnomore
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Member # 18936
posted
Lymetoo, you hit the nail on the head. Annier you are not convinced you need treatment. Only you can make that decision by reading all of the links provided to you and looking at a Lyme symptom list.
It's a difficult illness. We have all been through it You have to read all of the information that everyone has been so helpful in providing and decide how you feel about it.
You have so many symptoms of lyme and co's and your testing shows you have three positive bands and you have a past history of two tick bites and those ticks tested positive for lyme and you were not treated.
What else could it be that is making you sick? Only you can decide based on your research and participating on this site and reading the posts of others and see how their experiences compare to yours.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- " . . . those ticks tested positive for lyme . . ."
Well, THAT's sure explains a lot ! That can't be ignored. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Just my opinion about the CD57 test. I wouldn't cancel it. I know mine was covered by insurance, all my blood work was, except of course Igenex.
I felt like it made me feel better to see the low count, to see some kind of what some feel is proof of Lyme Disease. I wanted as much proof as I could get because my WB results were only Igenex pos, and CDC neg.
But like others have said MANY people test negative over and over and over again but are still sick....
I am having the CD57 done tomorrow morning and see where it leads.
The heavy snowfall gave my hubby 48 hours of airport snowremoval which we can put toward another visit to my LLMD and see what he suggests I do at this point.
I will call this week since my 4 weeks on this omnicef is now over and see what they want me to do.
Sorry about the run on sentences. My computer is broken and had no space bar that is why it is written in such a fashion. I borrowed my friends to write you this thank you.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Sounds like a very good plan. I hope you get some more answers and I'm glad that the snow storm worked in your favor!! Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I paid $950 for my first visit with my Lyme neuro. He has been the best doctor I've ever seen. Not only has he run every test under the sun, but he is the smartest Lyme doc I've ever met, plus he is well versed in supplements, and he is also a neurologist so he thinks outside the Lyme box.
I was already diagnosed with Lyme, Babs, and Bart when I got to him, but he ordered all kinds of tests for other things that he felt were overlooked, including things like a colonoscopy and endoscopy because my ferritin was so low to make sure there was no internal bleeding. None of these tests benefitted him financially.
Oh and by the way, he takes insurance. After two visits I got Medicare, so now it only costs me $26 a visit.
He diagnosed me with both small fiber neuropathy (by skin biopsy) and got me on IVIG for it, and Myasthenia Gravis (by antibody blood test.)
Every time we leave there, my husband and I are amazed at how knowledgeable he is. Without him, I'd just be continuing to slide further and further down the rabbit hole with no hope for remission ever, because I'd never know I had small fiber neuropathy and MG and I'd never have gotten the right treatment on top of the Lyme treatment.
It's too bad there aren't more like him. He isn't taking new patients. He's known my husband well for about 2 years now and I can't even get him an appointment.
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
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Tracy, glad to hear you benefited so much from your lyme neuro. The problem is they are few and far between. Most neuro's, if not Lyme literate are useless.
The only good one I know of is Dr. K in CT. I've heard good things about Dr. B in NYC but only indirectly. Not sure if she is as good as Dr. K.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Mine is Dr. W in CT. I think he's better than Dr. K. I agree, they are few and far between. I've heard horror stories about a few. I think Dr. W is still taking a waiting list but I'm not sure. He is planning to move to Palm Springs, CA...so people out there will soon have an amazing Lyme Neuro.
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
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