Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
This is just to say I've really appreciated all I've learned and the support I've received here.
Just returned from LLMD and she says I don't have lyme. Last Igenex IgM in December was still positive. But she said I have too strong muscle tone to have lyme.
Said lyme patients ALWAYS have poor muscle strength. (I feel my muscles are weak--have not been able to increase weights at gym for over a year). But guess she's the expert.
That should be good news. But actually am depressed because now I don't know what's wrong other than the high HHV-6.
Guess I'll have to find a CFS board to find info now. Need to know why I have this headache in the back of my head most of the time and neuropathy. The fatigue I understand.
She was wanting me to start mepron for babs after phone consult two weeks ago, but changed her mind today about that as well because I don't have chills, fevers or night sweats.
Lymenet always gave me hope--now feeling hopeless!
Maybe valcyte will cure all!
Posts: 1297 | From USA | Registered: Dec 2002
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bettyg
Unregistered
posted
marz,
so glad you have made PROGRESS and supposedly no longer have LYME, but do work on HHV6, and MANY HERE have that too so you can still stop by and learn/share with us too.
best wishes!!! HERE'S TO GOOD HEALTH ONLY! xox
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posted
That seems very strange. I lifted weights through my whole illness. To base the whole diagnosis on the fact that you have muscle tone seems silly.
I did lose muscle mass, but still looked in good shape compared to others ... it's because of where I started with this. I also couldn't increase what I was lifting for quite some time (still .... haven't increased in two years).
I am still sick with Lyme Disease .... and I'm in good shape with good muscle tone. I in no way "look" sick.
I just don't get it with a positive IgM and symptoms. I'd get a second opinion before you move on.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
doesn't sound right to me either...suggest you find another LLMD for second opinion.
positive igm can indicate chronic or long term infection. Did she do further testing such as CD57? I just wouldn't be quick to dismiss a positive IGM as a fluke.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
I also think you should get a second opinion.
This doctor's advice just doesn't make sense.
One reason that lyme is difficult to diagnose is that each person presents a bit or a lot differently. My 2 kids and I got lyme the same day and each of us have a different figuration of symptoms.
The fact that you are not experiencing muscle weakness does not mean that you do not have lyme.
Also not having night sweats etc. doesn't necessarily mean you don't have babesia.
A doctor who is skilled in treating lyme would not view things that way.
Respectfully, kpa Could you get in to see a dr. recommended here?
Posts: 56 | From Virginia | Registered: Jun 2007
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posted
Find a new LLMD!!! Let me know if you need names. You can NOT go by a test, nor muscle weakness to tell if you have Lyme or not.
According to Dr C of MO:
"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."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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posted
sounds rather suspicious to me~like maybe she's getting some pressure from somewhere.
Her remarks sound ignorant to me.
Definitely get a second opinion.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Yesterday I was just sort of stunned. Today I'm mad!
Thanks for your support and ideas.
I just was going to get get filled the rx for valcyte that I thought she sent me two weeks ago along with the mepron and zith plus orders for ekg. Of course now-yesterday-she's decided I don't have babesia.
I discovered she hadn't sent the valcyte one, but yesterday she said I should do that for the HHV-6.
I called her office and they'll leave a note for her for Monday
She also spent about 20 minutes doing something she learned called pain neutralization technique. It was kind of like acupressure and I'm supposed to learn to do it myself from a chiro near here.
Anyone else's LLMD do this? It did help, but didn't last and used up time I could have spent having some questions answered. I felt she was just practicing on me.
She also told me after examinng abdomen that I might have stomach cancer, pancreatic cancer, h pylori or an ulcer.
The little stomach aches I've been having and I thought might be babs along with my lack of appetite she attributes to those possibilities.
So need to get an endoscopy here.
I think I'll try the valcyte and if that doesn't work, I'll find a new LLMD.
Posts: 1297 | From USA | Registered: Dec 2002
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Find an llmd first. Not last.
It takes a while to get appointment. You could do the valcyte while waiting for the appointment, and still maintain contact with the her, in case the valcyte causes a reaction.
I cant believe she can diagnose by touch! What an ability, and also can rule out lyme just by muscle tone.
That's a new one...dont tell IDSA. They may think it is a new objective symptom if it can be measured.
Think:
Stomach ache: bartonella, lyme, etc. plus all the other things from your description the other day.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
Oh My Gosh - Please run as fast as you can to a new LLMD
What you are describing makes no sense what so ever!!!!
Doesn't sound like this is the Doctor for you
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
she doesn't sound like she knows what she's doing, frankly.
get thee to another doc ASAP!!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Geez,
I would have been scared to death! No Doctor worth their salt would feel a patients stomach and suggest stomach, pancreatic cancer OR H.Pilori!!!!
They might suggest that they feel a mass, okay, understandable to tell the patient that....but to suggest CANCER w/o further testing? Absurd.
Run, Run, Run, away from this doc before you do develope some other condition from the STRESS of it all.
GOLLY!
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
That pain neutralization stuff sounds like a real crock. That was the longest self-aggrandizing, desparate to sell website I have seen in quite a while. Snake Oil, if you ask me.
Get thee to a reputable doctor who is experienced with treating Lyme disease!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I'm still here Lymetoo. Thanks for the concern, it gave me a warm fuzzy feeling.
I am even more scared though, now. I saw a very nice internist today with a much better "bedside manner" than my LLMD
He felt what she felt and has ordered tests for me. I convinced myself over the weekend that this was all due to my stomach being tied up in knots due to tension--but now am concerned.
I'm waiting for a clonazapam to kick in. I rarely take it, but have felt a little panicky after seeing MD today!
If it turns out this is a tumor, I suppose I should thank my LLMD. I've seen 3 different MDs while searching one to follow me on lyme treatments in the past few months, and none of them have even touched me!
Ann-Oh, I agree about the website. It was so commercial and poorly done. And to think I paid her about $50 for it since it took up about 15 minutes of my hour visit.
I talked to a retired chiropractor and he said, acupressure, acupuncture and this pain neutralization thing is all pretty much the same thing.
Posts: 1297 | From USA | Registered: Dec 2002
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posted
Keep us posted, Marz. I hope there is nothing to really worry about... but DO get things checked out.
What's the next step? And THANKS for coming back... I WAS worried!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I just noticed my primary diagnosis on bill from LLMD last week is for CFIDS. Lyme is no longer mentioned. haven't got her follow up letter yet.
I'm wondering if the following that I found here on "success stories" could be the reason for her change in diagnosis:
Old post by Rita:
> My old lyme doctor gave up treating late stage cases because he >couldn't make them well. He was also catching flack from the powers >that be because of administering abx beyond limit of CDC guidelines.
Yes, my doc was put out of the Lyme business back in 1995. From that I learned how hard it is to work at getting your health and medicines for it. Hard doesn't even describe it. At first you are so shell-shocked from losing your doc and others who will not touch the disease because of that, that it is an event that changes your life. Of course, that explains the main reasons for my outspokenness.
>Since they weren't getting better, he stopped treating them to protect >his license.
Posts: 1297 | From USA | Registered: Dec 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Yes, the post by Rita is poignant and to be considered. Sad.
Still, there are doctors who are learning more. Even some LLMDs just don't look beyond TBD. And, I understand that they are overwhelmed.
Still, even w/o a doctor, there is so much we can learn and do on our own. Never give up. Rest. Take a break . . . but never give up.
Many us on are determined, even if on our own, that solutions do exist.
--
I think you need a better doctor who knows about all the stealth infections. I also would not rule out lyme or TBD so quickly.
However, it's better that CFIDS is on your insurance form. Lyme is often not covered. And, that, my dear, is most likely why your doctor is dropping you.
Again, I echo what others have said: Find another (excellent) doctor.
If you start on valcyte, inquire about liver protection beforehand. (I say that about EVERYTHING. Your liver is your life.)
Good luck. This may be very overwhelming, but there must be a solution.
----------------------------
Here are some reasons that educated doctors what to be sure patients get early and adequate care when possible -- and treatment, still, for chronic or recurring stealth infections:
This excellent article explains a lot about what chronic neuroborreliosis can do. It also details other chronic stealth infections, such as Cpn - and others - that should also be assessed in all chronic patients, especially those with neurological symptoms.
VIDEO right on your computer: A three-hour talk by Dr. Cheney on diastolic cardiomyopathy and ME/CFS.
CFS and Diastolic Cardiomyopathy - Paul Cheney, M.D., Ph.D.
============= =============
Mitochronidial damage and repair also are important to study.
you can read more about mitochrondia at www.immunesupport.com and at www.vrp.com (upper right corner, scroll down from "products" to "articles" for a search.
This is not specific to lyme (more so in reference to CFS) however, even if lyme or all infections were to be gone from us tomorrow, we have much repair work that needs to take place.
MITOCHRONDIA matter.
-
Good luck.
Again, there has to be a solution. I hope you find a brilliant doctor who absolutely loves working to solve puzzles for good people.
posted
Hi Marz, Read your message thread on the way to trying to find something similar to my worries.
Noticed you haven't been back in a few days.
Hope your are doing okay and that your test results turned out showing that you are fine (or at least that you don't have anything more to worry about).
(Once you go down the rabbit hole of Lyme Disease everything gets weird.)
Of course you should have tests done.
In a support group we had going for awhile in my city we learned that Lyme weakens the immune system and a couple of people in our group got test results that showed extremely low Natural Killer Cells / T-Cells and a couple did also develop cancer.
But once you have that taken care of, I agree with everyone else, find yourself a good LLMD. I stopped treatment when my doctor was put out of business.
I just couldn't force myself to find someone new. He is back and my husband insisted we take me back and start treatment again.
I have lost ground and am in the early stages of treatment. No fun.
But Lyme is no fun either.
So hope you get to a good LLMD and hope all is going well for you.
Take care. Posts: 49 | From Florida | Registered: Dec 2003
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