Well, my LLMD in CT pulled me off abx after I failed to improve. I've only been seeing him since October...tried~~~> 2 months of Bicillin LA and 2 months of Zith and Mepron with little to show for it.
I did various cycles of Biaxin, Tindamax and Doxy with an earlier MD with no results as well.
Despite my positive Igenex test, current LLMD says perhaps I don't have lyme or that it's an autoimmune response of some sort.
I'm taking a break from abx to see if any new manifestations of lyme will show their ugly heads. In fact, I'm challenging it to do just that. In the meantime, I will be trying various thyroid/adrenal regimens in an effort to exact some relief from my symptoms (primarily chronic fatigue and floaters at this point).
So if lyme is there...it's going to have to step it up a notch Posted by seekhelp (Member # 15067) on :
THat may not be a bad idea. Sometimes you need to see what you're up against. Also, you need to keep the mental focus too and make sure you don't psych yourself into more symptoms. I bet that's easy to do when you see the truck around the corner. Posted by Lymeorsomething (Member # 16359) on :
Yeah, it is aggravating. I don't think that I am the typical lyme patient as I have no pain or joint involvement...just chronic fatigue, floaters, and persistent endocrine issues. I also "look" healthy so that doesn't help I guess. I've also stayed in relative good shape despite being sick.
This guy was in Pam's book as well. He seemed lazy to me though. He also believes in the auto-immune part of lyme which doesn't instill confidence. I have none of the susceptible HLA types. I was expecting to stay on orals for a while at least so I was surprised when he sort of gave up.
He is going to repeat my WB in a few weeks though.
I may look for another LLMD but I'm soured on MDs right now. I haven't gotten anywhere except through my own research.
Perhaps the best confirmation of lyme would be a new manifestation as bad as that seems...
I hope the truck isn't too big, Seek. Posted by steve1906 (Member # 16206) on :
I'm sorry nothing has helped you so far!
But I must say since you tested positive on your Igenex test I think you need to look for a new doctor.
From everything I've leaned regarding lyme (4) four months of meds is just not enough.
Take care, Steve
Posted by Keebler (Member # 12673) on :
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I'm sorry. I really don't want to be negative here but I think if you just ignore it this early in treatment that it simply can't get better.
Addressing thyroid, etc, is all well (as is liver support, etc.) but knowing what I know about the nature of the spirochete, it's not just going to say good-bye.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
. . .
". . .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. . ."
==============
I can't do abx treatment (for various reasons). There are other ways. While I still have miles to go, the books here have saved my life.
Although very different in some ways, each author offers sound research.
I have found much help with both - at different times. If you want more details, I'll be glad to share my experiences with these or you can do a search here for the authors. Much has been written about them.
[ 02-15-2009, 01:58 PM: Message edited by: Keebler ]
Posted by emh2l (Member # 18886) on :
Lymeorsomething --
Can you explain to me what you mean when you say your LLMD believes in the "auto-immune part of Lyme" ? I'm trying to research LD but I haven't come across this before.
Lisa
Posted by Keebler (Member # 12673) on :
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Many doctors give up and call this auto-immune. The vast amount of research on the lyme bacteria - the spirochete -suggests that it can be an on-going infection but many in the medical profession just give up because they don't really understand the nature of this infection.
You said:
"Despite my positive Igenex test, current LLMD says perhaps I don't have lyme or that it's an autoimmune response of some sort."
--
Well, I think your LLMD is not all that educated about spirochetal infections, then.
And - if mepron was the only anti-babesia drug, that may not have been enough. Combination therapy is best.
--
Have other coinfections also been assessed?
I'm thinking you may need a second opinion by another LLMD who is ILADS-educated.
Please, address the infection. This can take a long time but it is worth it. Best of luck, whatever path you take.
=================
This book is specific to lyme and other chronic stealth infections.
The author discusses the endocrine connection and effects of cortisol from the stress of this illness.
You can read customer reviews and look inside the book at this link to its page at Amazon.
The Potbelly Syndrome: How Common Germs Cause Obesity, Diabetes, And Heart Disease (Paperback) - 2005
by Russell Farris and Per Marin, MD, PhD
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Posted by Keebler (Member # 12673) on :
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I don't think a repeat of your WB will help. Chronic fatigue and endocrine problems - and a positive lyme test - pretty clear picture to me.
Repeat tests are not that helpful with lyme as with other infections.
And, there may also be more to the picture. You will need a doctor who, indeed, has energy and persistence.
=======
Cardiac dysfunction and mitochrondrial damage (from lyme) could also be involved. While lyme is not mentioned here, it is certainly a possible cause of cardiac stuff.
Still, a great deal about how to understand and respect your energy situation is here - with suggestions such as hawthorn to help:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
And may I add to the list of things to test for: enteroviruses. Using Arup lab. The enterovirus website is not quite operational yet, but it will have loads of info on it soon.
A friend of mine is now 95% well after being sick for several years (very sick). She has been on antibiotics for lyme/coxiella, valcyte for high EBV and HHV-6.
She saw improvements from both treatments. She is now almost well by treating the enterovirus with oxymatrine. She had multiple pathogens making her ill.
Topic: Parvovirus B19 should be included in Lyme differential Dx!!!!
AliG - posted 12 October, 2008
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Posted by METALLlC BLUE (Member # 6628) on :
PM me the name of your LLMD. This is a note worth keeping track of. He wouldn't happen to be a Neurologist would he?
Additionally, I saw no Minocycline or Tetracycline used. I'm not sure why Doxycycline would be used in a late stage case.
And Bicillin LA all by itself with only Zithromax and Mepron? Zithromax by itself has been shown to be ineffective in most cases, and it's not a good combination at all with LA Bicillin unless Plaquenil is used in conjunction with something like Minocycline.
Higher doses of Mepron are need if used with Minocycline.
Additionally 2-3 months of treatment is entirely inadequate. Patients often don't even see results for 5-7 months on average, nevermind reasonable recovery at 1.5 to 2 years. And that's a "good" rate for this illness. 2-3 three months?
A positive test too: Which bands showed up?
Posted by Lymeorsomething (Member # 16359) on :
emh2l, sorry I wasn't very clear. This LLMD believes in what is commonly described as a post-lyme syndrome in which there is no active infection but the body "thinks" there is an infection and is responding as if there were an active infection (I think).
Metallic, I was IGM positive on 2 separate Igenex WBs. The last one I was positive on 31 and 34 with an indeterminate on 41. My CD-57 was 40.
Keebler, thanks for the info. I'm not giving up on treatment just yet, but I may take some time off to see what happens. I want to restock the gut with good bacteria for a while and then track down a decent MD.
I've had heart symptoms before but echos turned out fine and I still run lightly at times so I doubt serious heart involvement. Fatigue and floaters are bad though...I'm like a slug even though I maintain normal schedules (it's very hard). I clearly also have endocrine chaos. Last IGF-1 was below normal. I have low thyroid symptoms despite treatment. I may have adrenal fatigue mixed. There is a lot going on...
Posted by dmc (Member # 5102) on :
Sorry to hear this...doesn't sound like any of the CT llmds I know of on my list... the "believes in 'post-lyme syndrome'" is a red-flag to me.
I do hope you find ideas to follow. Hope your endocrine issues resolve soon.
Posted by Geneal (Member # 10375) on :
Yikes!
I agree with everybody else.
Spend your money on a new LLMD.....not on additional testing.
Post Lyme syndrome.....my "behind".
Give Lyme enough time and trust me, it will rear it's very ugly head.
Problem is that when it does, hopefully like me,
You don't go downhill really fast.
I went from functional to non-functional in a matter of a couple of weeks.
Hugs,
Geneal
Posted by seekhelp (Member # 15067) on :
Doc's in MI (LLMDs) just don't buy into Dr. B's belief mono Azithromycin is useless. THey all worship Dr. J and his success with the children on this protocol. Very frustrating. Why is Dr. J giving so much credibility there I wonder?
Posted by Lymeorsomething (Member # 16359) on :
I should point out that I have no history of or inclination to mental illness so my symptoms are definitely not "all in my head." I was a good athlete up until two years ago when mono seemed to trigger my spiral. I still exercise and work so I'm not feeling sorry for myself but I'm also not getting well.
There is definitely something mechanically and tangibly wrong with me but what is it? I really wish Dr. House was real
With my IGF-1 heading south, I know something is disrupting normal HPA activity and it's not lack of sleep....
Posted by METALLlC BLUE (Member # 6628) on :
Wait a second, have you been tested for these things?
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
Focus on the viral infections. If you have tested for these before, did anything show up on your testing?
Posted by CherylSue (Member # 13077) on :
You've only been treated since October? Had just a few meds before? YOu've just scratched the surface.
I would suggest you see another LLMD. Treatment for chronic Lyme can last 2-3 years with a rotation of ABX to treat coinfections.
Don't give up too soon!
IMO, CherylSue
Posted by Michelle M (Member # 7200) on :
I saw very little improvement for at least six months. After addressing babesia improvement speeded up exponentially. The "post lyme syndrome" comment is a big blinking sign: Find a real LLMD. You CAN get better, just not with this guy.
Michelle
Posted by Lymeorsomething (Member # 16359) on :
Metallic, I can't say that I've been tested for all those. I was elevated on EBV and HHV6 as are many lyme patients.
My D levels were low at first but I've gotten them up into normal values with 2000 IU supps.
I will take a list of suggested tests to my next doctor.
I have weird floaters that seem to change orientation so it really makes me feel something is in there...but what?
Posted by METALLlC BLUE (Member # 6628) on :
Were you treated with Valcyte for those viral infections. The floaters, given your diagnosis are probably Lyme Disease. Do you have light sensitivity or sound sensitivity too?
Posted by Lymeorsomething (Member # 16359) on :
I tried Valtrex for a few months with little results. I'm just concerned about chasing phantoms with heavy duty meds. I definitely will pursue more testing first.
I do have some light sensitivity. The floaters drive me bonkers at times. Eye doc said my eyes were OK though.
Posted by jamescase20 (Member # 14124) on :
I have a scope and I see whats happening...the drugs dont really work...either its hypercouglation or there able to use there efflux pumps to purge the drugs, its the bugs "sump pump", this is proven in studies.
These bugs cannot be human dead end vectors, as they appear resistent.
One good note...is proven in labs that pennicclins and the entire ceftin class...(these are related loosely to penns) are not able to be purged by these bugs efflux pumps...and a drug called augmentin when combined even in low doses seems to allow kill off of CWD lyme as well, as I have witnessed this myself. And Dr Gasser in france found clinically that augmentin or "co-amox" when combined with penns or ceftins worked better. There extracellular so the die off takes a long time...but it can get you there slowly. Lyme is NOT resistent to penns or ceftins.
Posted by jamescase20 (Member # 14124) on :
I personally found bicclin not that effective...I did however find ceftin 3-6G and augmentin combined with either doxy or minocin quite a effective combo.
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