posted
Saw LLMD last week. After thorough visit, he concluded that I do have LD. He also mentioned Babesia. My husband was glad to finally have answers and anxious to start Tx to get me better. I am not yet convinced...
* I have always had high EBV titers when sick and they remain high after an "episode". I mentioned to LLMD and he dismissed it as quickly as most dismiss LD. He is not running EBV labs. Is that normal ? Seems like it should be looked into.
* My sx have always followed a relapse/remit pattern. Big reason most docs suspected MS. Is this typical of LD ? Can someone show me articles about this pattern ?
* I'll admit that I am still researching LD but I am finding strong arguments on both sides of the fight. I am VERY concerned about long-term Abx and am not sure about doing it. This LLMD is a big ILADS member, and obviously falls on that side of argument. I feel like I either get LD dx and have to follow his tx OR get no dx and no tx. Anyone else feel boxed in ?
* I'm wondering if this LLMD ever says "no LD". You can PM me if you want his name. He is adamant that most people have it and don't know it. Just wondering how objective that is.
* Has anyone ever had labs come back showing no LD on WB/Igenix and still been told they had LD?
Sorry for so many questions ! My PCP still feels maybe this is viral. He's not the smartest guy but he has followed me the whole time and knew me when I was "normal". I haven't seen an ID doc -- I got so fed up I gave up. My sx are now so severe and frightening that I have to do something. I am just so confused !
Posts: 41 | From SC | Registered: Jan 2009
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Good Morning,
Yes, I also feel (boxed in). I've been taking meds for 6 months now and have very little or no improvment.
I know many of us have been taking them for many many years and still are very sick!!!
I hate taking all these meds and I'm thinking of going other routes.
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I was first diagnosed with remitting/relapsing CFS for over 7 years. It was getting progressively worse when I contacted the Michigan Lyme ASSN. and finally had the Igenex western blot and saw a LLMD.
I've been on abx over a year and returned to work last summer after a 2 year medical leave.
It's a slow crawl to recovery, but I've had this disease for almost 9 years.
Do I sometimes wonder if it really is Lyme and its coinfections or something else? Yes, I do.
With CFS there's very few options. If you have Lyme there are more options and treatment, but it can take a few years.
I'm about 80% functioning, but I'm hoping for that full recovery. I've tried many, many different avenues and supplements. Some were helpful, some were not.
It's a leap of faith here. Give it a full try, do the research, and get some rest.
Wishing you the best, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
* My sx have always followed a relapse/remit pattern. Big reason most docs suspected MS. Is this typical of LD ? Can someone show me articles about this pattern ?
-- YES! Many people with lyme have good days and then bad days.... it comes and goes, comes and goes. This is the way it was/is for me, and I know other people who have had this as well with LD.
* Has anyone ever had labs come back showing no LD on WB/Igenix and still been told they had LD?
-- YES! My Western Blot was complete crap. Even my WB from IgeneX was pretty crappy. I was still diagnosed with lyme due to positive Bart and having TONS of symptoms that all fit lyme and or Babesia or co's of some sort (as well as having a CD57 of only 9!!!!). And I cannot tell you how lucky I am to have been diagnosed regardless of testing because I am doing much better than I was doing before I was diagnosed. I am having SOOO many more good days. It's wonderful. I still have bad days, but I'm so glad and thankful to be having more of the good days.
-------------------- 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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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I was diagnosed with LD with just one positive band, 41 on the WB. I have been in treatment for 9 months and am seeing a small amount of improvement. It is a slow road to recovery, but there at least is a recovery in sight.
Yes I too sometimes wonder if LD is the right diagnosis; but it is the only one that offers a chance of recovery. I want to be well, so I am willing to go this route and see what happens.
Also, I have a LLMD that is willing to look elsewhere if he suspects that it is something other than LD.
No he did not test me for viral infections, and I believe the majority of them believe that viral infections are able to resolve on their own once the bacterial infections are under control. I tend to believe this myself.
There are hardly ever any definitive answers where LD is concerned, since many of us never get CDC positive results. It is a matter of finding a doctor that you feel very confident in and taking that leap of faith.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
PM me. Who did you see?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It would be a wise idea OP to have your primary care doctor run some testing. Here are the tests I recommended in another thread to patients experiencing a similar pattern.
Test for these: Quest Labs or any general lab can handle these
Mycoplasma Penumonia AB IGG, EIA, IGM EIA Chlyamdia Pneumoniae IgM, IgG, IgA Stachybotrys Panel II - Test IgE, IgG, and IgA Magniesum RBC Vitamin D D,25-oh, LC/MS/MS Total, then D3, & D2
You can get some of these through Quest too, but Medical Diagnostics Lab is preferable.
Herpes Subtype HSV-1, NSV-2 PCR Epstein-Bar Virus (EBV) PCR Cytomegalovirus PCR B12, Folate Human Herpesvirus-6 (HHV6) Variants A-B Mycoplasma General by Qualitative PCR
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I can't read all your post now but will address this:
" VERY concerned about long-term Abx "
1. LYME itself is one of the most toxic infections known to man. It destroys the liver, the heart, the brain, etc. It MUST be treated.
the effects of abx either on the liver or regarding resistance of potential future infections:
2. If the person is not treated for the lyme infection, they will have little future, if any and
3. the liver can be protected with such supplements as Milk Thistle, NAC, ALA or a host of other things. PubMed has hundreds of articles on these and other supplements or herbs that do offer liver protection.
However, the FDA, if would like shut all that down due to pressure from pharmaceutical companies.
-
There is so much more reading that you can do to understand why treatment - and further evaluation is vital.
You said: " . . .PCP still feels maybe this is viral. He's not the smartest guy . . .
Well, this is your LIFE on the line and I'd sure go for the smartest doctor I could find. Someone who has studied lyme and other tick-borne infections for years and who has treated hundreds of other patients.
LLMDs also - usually - know about other chronic stealth infections (as Metallic Blue listed), so talk to your LLMD about what else might be going on and how that might be addressed.
Lyme is not taught in medical school. Even the ID doctors do not have the advanced training. Coinfections are common but most doctors simply don't have a clue.
Please consider what your LLMD has said.
I'll come back with some links for you. This is a lot to learn, especially considering that the medical establishment has ignored it - exactly what the insurance companies want.
. . . Explore the other side of the post-Lyme syndrome (i.e. the likelihood of chronic ongoing infection),
. . .
- Full article at link above.
---------
There are several more articles about patients who had been misdiagnosed with MS or ALS, but later discovered it was lyme all along. Treatment brought improvement.
----------
Good luck to you as you learn more and settle on decisions. Take care.
Topic: When I had MS, things were different . . . .
Posted by njlymemom
Excerpts:
I, like many here, was told that I had MS when I was about 30yrs old. Eleven or so years later and wasting away, I found that I indeed had/have Lyme and cos. . . .
. . . I still get news from the MS society. I just never thought of calling and taking my name off the mailing list. Well, I was looking through the magazine "Momentum" from the National MS society and it just dawned on me.
Boy am I thick, this magazine has some hefty advertising in it. Mostly from the drug makers of MS drugs.
. . . None are cures, they advertise to "keep you active longer". . . .
. . . It would certainly benefit the companies making all the expensive drugs. . . .
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My lyme disease was episodic at first. I would be very sick for about 7 months, then, one day out of the blue, I would wake up and be perfectly normal again. I would be normal for about 5 months. Then, one day all of a sudden I would be back into "the sick time" again--unable to stand for more than a few minutes, extreme muscle weakness and profound fatigue, etc. This went on for a few years. Finally, I was always sick.
This was a very puzzling time for me because it hardly seemed possible that my health could see-saw like that. Yet, it was happening to me.
I was finally diagnosed with lyme disease, babesiosis, and bartonella. I finished my lyme treatment about 4 years ago and am symptom-free, enjoying my life.
In talking with people with severe fibromyalgia (which is generally caused by lyme disease), I have run into a number of people who do recall an episodic phase of the disease before it finally became continual illness. So, this does happen to many people.
It is hard to find articles that talk about this because, I believe, most people only find their lyme diagnosis once they are continually sick. Nevertheless, by searching on words like "episodic" and "remit" I was able to find a few references to this aspect of lyme disease for you. See below.
http://lib.bioinfo.pl/meid:14551 "Dogs with episodic malaise and lameness with persistent high IgG titers are suspect of suffering from borreliosis."
http://www.aerzteblatt.de/int/article.asp?id=63240 "In untreated Lyme disease, joint manifestations can arise months to years after the tick bite, usually in the form of a chronic mono- or asymmetrical oligoarthritis. The knee and elbow joints are most commonly affected. A not very painful arthritis occurring in episodic attacks is typical, often associated with a voluminous effusion but only mild signs of inflammation. Each episode lasts for several days to weeks."
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Keelber: "You said: " . . .PCP still feels maybe this is viral. He's not the smartest guy . . .
Well, this is your LIFE on the line and I'd sure go for the smartest doctor I could find. Someone who has studied lyme and other tick-borne infections for years and who has treated hundreds of other patients."
* I know it is my life but I want to get the correct answer. IF it is Lyme, then obviously an LLMD would be the person to see. But if it is viral or something else, then maybe an ID doc would be the best person. See what I mean ? My PCP is open to exploring lots of routes. The LLMD didn't seem to be that way at all.
Keebler: "LLMDs also - usually - know about other chronic stealth infections (as Metallic Blue listed), so talk to your LLMD about what else might be going on and how that might be addressed."
* I talked to this LLMD about my consistently high EBV titers and about other possibilities to maybe consider (places I've travelled/lived, my husband's exposure to things, etc). He really wasn't interested. Didn't even order EBV testing be done. I really felt like he was only keying in on Lyme. Say it is EBV or another virus -- abx wouldn't work and I would be wasting my time, $$ and exposing myself to risk.
I'm just not sure and he is doing little to convince me. I've read lots on both sides of the argument and I think the truth may lie somewhere in between. He is already talking IV abx and long-term -- with no bloodwork or anything. Is that normal ??
(Sorry, I don't know how to work the 'Quote' function. )
Posts: 41 | From SC | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Did you EVER have a rash after a tick bite?
It might be a good idea to talk to others in your local - or nearest - lyme support group. If any are being treated by this doctor, are they improving over time ?
You could also get a second opinion with another ILADS-educated LLMD who has assessed hundreds of other patients for various tick-borne infections.
ID doctors don't have the training to be able to distinguish - and none seem to understand the need for treatment beyond a couple of weeks. They tend to discount the longevity of many infections, not just lyme. It would be a very rare ID doctor who would really treat adequately for EBV, HHV-6 or Cpn.
You can find links to organizations here for HHV-6, EBV, Cpn . . . and find other doctors through those. However, it would be best if such a doctor were also expert with lyme and other tick-borne infections.
posted
Nope, no rash. Only remember one tick bite and that was just this December. Sx for 2+ years.
Some patients have improved with this LLMD, others really seem to dislike him.
Only other ILADS doc around doesn't see Lyme folks anymore.
I know most ID docs don't agree with ILADS/have same training. I just want someone to tell me what it is -- LD or not.
Posts: 41 | From SC | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I just thought if you had a rash, that would be clearer. Still, many are bitten and never are aware since the bite site is numbed by the tick's saliva.
You can get tests but since most labs don't do the right ones, it may be out of your pocket. And tests are not always able to show stuff. Lyme is not the only infection that is hard to test.
Still, check out IGENEX - I think it's fine to tell your LLMD that you really want the full range of IgG and IgM western blot for Lyme, Babesia, Ehrlichia, etc. [ www.igenex.com ]
It's important to know, though, that science still has a long way to go in being able to be spot-on. But, if you do test, ask IGENEX the best way to do this and have the drawing lab follow instructions to the letter.
Do you have friend or relative who lives near another LLMD? Perhaps you could schedule a consult and have a place to stay so that traveling would not be so hard.
Check the Cpn site listed in Timaca's thread. Perhaps there is a doctor treating that in your area. S/He would be able to also consider lyme and if, Cpn is present (or other infections) be able to cover all the bases.
The Potbelly Syndrome: How Common Germs Cause Obesity, Diabetes, And Heart Disease (Paperback) - 2005
by Russell Farris and Per Marin, MD, PhD
=============
This details accounts of a patient who had chronic Cpn (Chlamydia Pneumonia) and what he found that helped the cardiac issues. Some of his suggestions are also good support advice for those with lyme disease.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I have to weigh in.
Never had a rash....never saw a tick.
Don't know how long I've had this disease and co-infections.
I knew, after researching Lyme, that this was what I had.
Luckily I had a Lyme specific band show reactive from Quest (IgM 23).
This was the only band I had come back positive.
I had been tested for just about everything under the sun.
My Most Common Mis-Diagnosis was Post Traumatic Stress Disorder.
As if that caused daily low grade fevers, multiple pink eye infections,
Joint pain, memory issues, blood in my urine, speech and language issues,etc.
I am 28 months into treatment.
I do feel better. I am back to work for the 1st time since Katrina.
Not only am I doing well in my position (Speech Pathologist)
My ability to speak clearly and find words has finally improved so that I can work.
No one can tell you if it is Lyme or not.
On a spect scan, Lyme and MS look alike.
There is no definitive test for MS.....
Or Lyme.....
A negative WB means nothing.
What about this. Try antibiotics for 30 days.
See if you herx (I don't think you would with MS).
Stop antibiotics at the end of 30 days. Wait 10 days.
Retest via Igenex Western Blot.
Remember Lyme disease testing only measures an antibody response.
My LLMD says that often his sickest patients are the ones
With the fewest bands positive. The body is simply overwhelmed by the bacteria.
Not producing antibodies.
Antibiotics for 30 days may act to "prime" an immune response from your body.
There are people who have never, ever had a positive Lyme test.
Yet, upon their death, when their tissues were biopsied,
Lyme disease absolutely riddled their systems.
Unfortunately, like MS, this is not a black and white disease.
It is all shades of grey.
Does it bother me to have been on antibiotics this long?
Nope.
I'll take a functional meaningful life over what I had before on any day.
Good or bad.
We all ask the question "Is it really Lyme?"
I think it is part of the nature of this beast.
As far as long term antibiotics are concerned,
If I had acne, I could receive antibiotics for years with no questions asked.
So......do some research.
Look at the symptom list. Look at it again.
Try the 30 days of antibiotics.
Retest.
Rethink.
I hope that you make the decision that is right for you.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Here's my two cents. I have had Lyme for over 45 years, to my best estimate. I was dx'd in April 2006.
I have never had a positive Lyme test, Igenex or otherwise. I do however get some positive bands, and they are important ones. More show up as my tx progresses.
I gradually became more and more fatigued over the years, and developed other symptoms, too.
But I just thought it was part of the normal "aging process." Of course I was in my early 30's when this started to really be noticeable.
But I read that it was normal for your body to change by then, so not having anything else to compare to, I thought it was normal. I thought I was just a low energy person.
I was dx'd with a multinodular goiter in 1986. It is due to hypothyroidism. After that when I had some high energy days or weeks I just figured my thyroid was hyper at the time.
I think it is normal to question your dx, especially when it is not clear cut. For me, I was so happy to find there was something treatable that I was thrilled to find it was Lyme.
Instead of being stuck with a nowhere dx of CFS and FM I could actually get better. Since I began tx almost three years ago I have seen improvement overall in some of my symptoms, while others persist.
I didn't be come ill recently, so I don't expect to be well quickly. I also have tested positive for Babs Duncani, and have herxed on Bart tx, so still treating those.
Do you herx on your meds? That was one thing that indicated to me that I was on the right track. When when my LLMD did an abx challenge prior to testing me for Lyme I herxed. I was thrilled.
Many people with Lyme also have positive EBV titers. I do not. Guess I missed mono somehow. There are other viruses that are often involved with Lyme. Have you talked to your LLMD about this?
Hope this helps you. It's probably more than two cents, but is my experience.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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I'm relatively new to all this lyme stuff, and I would share your concerns about the doctor's focus on lyme to the exclusion of all other treatments. (When you have a hammer, everything starts to look like a nail, right?)
But I would say this:
(1) You may want to arrange to do an antibiotic "challenge" test -- take antibiotics for one month (it won't be that long) and then insist on having the Elisa/Western Blot done again. Many people who test negative for Lyme initially will subsequently test positive after a course of abx. You can search the threads for more info on why, but basically, it would be stronger evidence that your problems are caused by Lyme.
(2) Usually the initial consult with one of these guys is the most expensive, so you've already made some financial commitment. At this point, you may want to consider a 1-2 month "trial" to see the effects. You may find that a doctor's brusque manner is offset by getting results.
(3) You can insist on using oral antibiotics for the first month (at least) to evaluate their efficacy. If the doctor will not do that, and insists only on IV antibiotics immediately from the start -- then you should RUN, not walk, the other direction. There *are* more costs (both in terms of risk and money) associated with IV abx, and any doc should be willing to see if oral abx will work first, even if he thinks they only work one time out of ten.
Good luck! We are all in this same big, crappy boat!
-------------------- Wildlife biologist working in tropics since 1997; tick bites in Nicaragua in March 2007, started getting sick May 2007; diagnosed with Lyme based on serological testing in Jan 2009; treatment starting Feb 2009. Wish me luck! Posts: 116 | From Seattle | Registered: Feb 2009
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bettyg
Unregistered
posted
Originally posted by emh2l:
Saw LLMD last week. After thorough visit, he concluded that I do have LD. He also mentioned Babesia. My husband was glad to finally have answers and anxious to start Tx to get me better. I am not yet convinced...
* I have always had high EBV titers when sick and they remain high after an "episode". I mentioned to LLMD and he dismissed it as quickly as most dismiss LD. He is not running EBV labs. Is that normal ? Seems like it should be looked into.
* My sx have always followed a relapse/remit pattern. Big reason most docs suspected MS. Is this typical of LD ? Can someone show me articles about this pattern ?
* I'll admit that I am still researching LD but I am finding strong arguments on both sides of the fight. I am VERY concerned about long-term Abx and am not sure about doing it.
This LLMD is a big ILADS member, and obviously falls on that side of argument. I feel like I either get LD dx and have to follow his tx OR get no dx and no tx. Anyone else feel boxed in ?
* I'm wondering if this LLMD ever says "no LD". You can PM me if you want his name. He is adamant that most people have it and don't know it. Just wondering how objective that is.
* Has anyone ever had labs come back showing no LD on WB/Igenix and still been told they had LD?
Sorry for so many questions ! My PCP still feels maybe this is viral. He's not the smartest guy but he has followed me the whole time and knew me when I was "normal".
I haven't seen an ID doc -- I got so fed up I gave up. My sx are now so severe and frightening that I have to do something. I am just so confused ! [/QUOTE]
you did something right ... NOT SEEING AN INFECTIOUS DR who doesn't believe in chronic lyme and who only treats up to 3 wks. maximum antibiotics!! yippee for you!
there are other llmds too; they all do NOT treat in the same manner.
you joined last month; you were sent a welcome post by me; read and print off dr. burrascano's 08 lyme treatment guidelines!
you used asked using quotes and that too is address in my welcome note to you but will put it here so you do NOT USE BOLD, which is so very painful for my lyme affected eyesight! *********************************
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING. delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
there is only 1 llmd in SC; so it's easy to figure that one out.
you've already run EBV tests in past; i don't see a reason to rerun them now since they are always up.
MY NON-MEDICAL OPINION but i've had ebv for 39 years and didn't know it until after my correct lyme diagnosis july 04; 34.5 yrs. after being bitten by that darn tick!
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
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