posted
Thats what i'm asking myself. Lyme is a clinical diagnosis. Is it not possible that other illnesses get just as worse als lyme and you get a "wrong" diagnosis?
I've seen three LLMD's and they all said lyme's my case. I'm seronegative except CD57 and MELISA (LTT/Elispot).
My other doctor tells my, it's all because of my thyroid issues. I'm confused all the time. I have months where i think "yep it's all lyme / co's" and than i get in this "i don't know what it is" state. On the thyroid boards some people seem to be just as bad as with lyme.
I'm sick now, for 6 years. 2 years very ill, than i got better with the thyroid thing but i had major insomnia, very fibromyalgia like symptoms, stiff neck and other stuff. after a few weeks of low cortisol for the adrenals (doctor wanted to adress the adrenals) i broke down and all symptoms worsend to the point where i went into hospital for a few hours.
the doctors still say it's more or less my thyroid.
I trated it upon the clinical diagnosis. All i did was losing lots of weight, i felt horrible all the time. I stopped abx and continued zhang for 1 year. It helped a bit but i'm more fatigued than before. Before i managed to go to university, im now not capable of that. It feels like i ruined my body with the ABX. While i was on ABX, i was better, as i was off them.
Posts: 159 | From Germany | Registered: Nov 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Sure it can happen. I believe it happens a lot on this forum. Most specialists see what they want. It's not just a LLMD thing, though my gut feel is they over-diagnose the most.
Saying Lyme gives them a new patient. Not Lyme means no revenue. Many are probably honest, but they are human like all of us.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Maybe treat the thyroid and see what symptoms are left.
We do get symptoms from other things. I have battled anemia about all my life (family history of it). I do get symptoms of it once in a while that could be mistaken for a coinfection.
Other things can cause our symptoms. We may have other conditions in addition to Lyme.
There are many facets to treating Lyme Disease, much more than *just* abx.
I agree with seek on one level, but not on another. For one, more people that LLMD's test have Lyme because the people have ruled out about everything else. The other, most LLMD's have waiting lists, so don't have a shortage of patients.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
i tested a lot of stuff. they never found something except thyroid issues. but my neurological problems aren't disappearing. the fatigue is still very strong.
i don't feel the doctors here are in need of patients. it's the opposite. most don't take any new ones!
im tired of docs. i have seen too many. what ELSE can you have that kills your ability to live your life except lyme with my symptoms?
quote: Maybe treat the thyroid and see what symptoms are left.
I did that for 5 years! I dryed so much for my thyroid but i wasn't able to function fully. even at university i still had very bad up's and downs. i contacted other thyroid people but they weren't as sick as me.
i felt instantly sicker when i took abx. i remember i felt totally disabled on doxy.
Posts: 159 | From Germany | Registered: Nov 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I read your other thread. I did not see it before. Your story sure does sound very suspicious of Lyme. I think many diseases can kill your ability to live other than Lyme (MS, MD, ALS, MG, etc.).
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
i don't have MS. that's 100% clear. also ALS and any other disease is 100% out of the race. i went through hospitals and they checked everything but they didn't find anything.
Posts: 159 | From Germany | Registered: Nov 2010
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posted
i don't have MS. that's 100% clear. also ALS and any other disease is 100% out of the race. i went through hospitals and they checked everything but they haven't found anything.
Posts: 159 | From Germany | Registered: Nov 2010
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posted
You don't say if your thyroid problem is hypo or hyper.
I'm no expert and can only give you my experience.
I had hypothyroid problems years before Lyme. The hypo problems I had were no energy, weight gain, feeling slightly ill all of the time without reason. Thyroid meds pretty much helped all of that.
Lyme is very different to me. I never had the extreme neuro and pain problems because of low thyroid.
And thyroid problems were consistant except when on meds, then symptoms would improve. With Lyme it's extreme ups and downs and pain that moves around. And brain fog that's sometimes better and sometimes worse.
-------------------- "To eat is a necessity, but to eat intelligently is an art" - LaRochefoucauld
Lyme neuro symptoms for 20+ years. Infected in Maryland. Diagnosed with Lyme Jan 2011. (previously diagnosed with CFS, Fibro, peripheral neuropathy) Posts: 261 | From Colorado | Registered: Oct 2010
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posted
for what it's worth Energyman.... there are NOT MANY LLMDs here in France, and I have heard great things about Dr. S who resides in Germany- don't know where exactly but? (sure you heard of him)
French people with chronic Lyme stuff go to see him in Germany he's gotta be good, why not? I also know 2 people who really sing his praises-some amazing results........
hope u get your energy back!!!!
-------------------- Change is inevitable Posts: 77 | From France | Registered: Jan 2011
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posted
Energyman - You sounded a lot of what we have been hunting. After ruling out ALS, MS, HD, Brain tumor, and some others, one would think you can settle on Lyme, but then the treatment did not seem to do much.
So the hunt continues on...very discouraging and scary.
Posts: 822 | From midwest | Registered: Apr 2009
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posted
how did you differ lyme from thyroid. i feel ill all the time. i have a lack of energy but i feel like the thyroid meds don't sort that out. what thyroid meds did you take? i'm also very allergic to different things.
funny: i only feel normal when i have a flu or a very big hangover. that's strange. but i never cated a flu since years. i feel ill but it don't get the common stuff anymore.
when did you get lyme? did you have lyme all the time?
yep, thats the thing. i settled on lyme 2 years ago but it seems like most LLMD's put you on a lot of ABX and thats about it. for me, that made everythinga lot more worse. i mean, i don't have these strange brain symptoms anymore but physically i suffered from the abx. while i was on abx i was better after a few weeks for any reason. but i felt like since i was taking ABX i was too disabled to study.
i thought ok i get of the ABX and i'll get back. i'm off ABX over a year and i don't have enough energy to get back. fatigue all the time.
the thing is: a thyroid docs says, everything comes from the thyroid. your neuro symptoms can be a part of that - they didn't change so far (tried vitamins, high hormone doses)
a LLMD says: oh you have fatigue, neuro symptoms - it's lyme
the best thing is: actually it could be a mix of both. i'm afraid of another ABX treatment, because i'm physically in a bad shape.
since im off the abx i only feel very crappy. this is now over a year.
Posts: 159 | From Germany | Registered: Nov 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Fix your thyroid issues first.
If you are still ill, check for other infectious pathogens such as HHV-6, EBV, enteroviruses.
posted
i only had 6 month of ABX. and only mono therapies. thats's it.
i'm trying to fix the thyroid since years but it does not seem to be the major problem if you ask me.
Posts: 159 | From Germany | Registered: Nov 2010
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posted
i really don't know how to test for those things like hhv6 and entero. i'm in germany and i don't know where to test such stuff Posts: 159 | From Germany | Registered: Nov 2010
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posted
I have thyroid for ten years now and had to switch from synthroid to armour to cytomel and now the llmd put me on natura-roid which seems to be doing great.I have EBV that was just found and unsure if I truly have lyme too since I am negative. He gave me sublingual b12 twice a day 1000mg each since i was found not to sbsorb the vitamin, also problems with d3 absorbtion so i get shots..also on magnesium taurate and coQC twice a day for energry. The only abx i am on is omnicef oral? I have much more energy in just five weeks with the nutrients and new thyroid med. I have no clue about the EBV since it gets shrugged off as nothing by each doctor I see. I dont know what you we are to do with that one? 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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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Has anyone read the book Stop the Thyroid Madness?
I have not, but thinking this may give some answers to the thyroid issue. I have low temp, myself... as does my whole blood line from my grandmother to my children.
This book is on my wish list.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
The woman is right. I think my question is: how can you be sure it's lyme? I think some nerve problems aren't that normal for thyroid issues.
Posts: 159 | From Germany | Registered: Nov 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Eman it took me 6mths to get my brain coming back and another 6 for me to think I was going to make it. There are only 2 choices for syndromes of unknown origin.
Treat for everything or take the steroids that suppress the immune system.
-------------------- 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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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That's a good way to look at it. Makes a lot of sense Pinelady.
quote:Originally posted by Pinelady: Eman it took me 6mths to get my brain coming back and another 6 for me to think I was going to make it. There are only 2 choices for syndromes of unknown origin.
Treat for everything or take the steroids that suppress the immune system.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I had this same question for so long, after hypothyroid diagnoses, multiple auto-immune conditions, peripheral neuropathy. Even after my Lyme diagnosis, it took me nearly a year to try the antibiotics. I've started treating with antibiotics, which has helped me a bit, so for me, my skepticism has been somewhat overcome. But there are folks who write about feeling lousy on antibiotics for a very long time until they finally get the Lyme load sufficiently low to start recovering. Some of those folks never got any better, and continued to deteriorate, on the oral abx. Only with the IV abx did they find improvement. Perhaps you could be in that category? Also, did you have a Lyme test from Igenex in California? My ELISA was negative on a test at a local university lab, but Igenex found plasmid DNA in my blood, as well as four positive bands on the WB.
-------------------- We really know so little about the body and the microbiome. Posts: 261 | From Southern California | Registered: Jan 2011
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thats a tough story 365! i could fit that category 100%
Posts: 159 | From Germany | Registered: Nov 2010
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Pinelady
Frequent Contributor (5K+ posts)
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posted
365 we have to try to do something to stop the virus' in us also.
Some use C, Lipoic acid, etc. etc. as well as treat the parasites most of us have.
IMO you will not get better lickity split. I have seen very few not get a lot worse before they get better.
It is a journey we are on. And there are yet still many things to learn...Such as the reports that Heparin is needed...
-------------------- 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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Tracy9
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posted
I have been treating Lyme for six years, also co infections with the TOP LLDs. When I plateaued with one, eventually I'd switch. I've been with my current and hopefully last one for about 3 years.
I just kept getting worse despite every treatment, IV, you name it. He thought my severe neuropathy was suspect, so he did a biopsy and found I had small fiber neuropathy. I began IVIG treatment. SFN is caused by Bartonella and Lyme.
This past October a choking issue I'd had for a long time got so bad people noticed and someone on this forum urged me to mention it to my LLD. He promptly tested me for Myasthenia Gravis and the test was positive. In reading about it, a whole host of symtoms I attributed to Lyme weren't Lyme at all, but this other rare and serious disease, that was most likely caused by Lyme as any long term bacterial infection can cause an autoimmune disease.
So, it isn't always just Lyme. This latest diagnosis has really shaken me up. I've spent hours trying to make sense of how long I've had it, how many Lyme symptoms were really this, do I still have Lyme at all or have I beaten it and am I really just dealing now with these two autoimmune diseases, etc.
My PCP put it into perspective for me on Monday. He said I'm dealing with both MG and Chronic Lyme. Plus SFN of course, but those symptoms are distinct from Lyme. He named some symptoms that fell into each catagory. Also, people on the MG boards have been helpful in delineating what is what.
For the most part, I can clearly see what is MG, but there sure is some overlap. This is a very confusing illness, and it causes us to have lots of other illnesses the longer we have it. It causes hypothyroidism, which I have too, which also causes autoimmune diseases.
I can tell you, my LLD took me off my Lyme meds 2 1/2 months ago to get a "baseline" and do IGENEX testing, and I've been trashed ever since. I sleep 14 hours a day, I'm in pain, I definitely need those abx back. I can't wait to get into him next week.
Good luck with finding some answers. These are muddy waters.
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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canefan17
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posted
Treat for 6 weeks and re-test
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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lululymemom
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Member # 26405
posted
I think it's absolutely possible to be misdiagnosed with lyme especially when it is said to be a clinical diagnosis and not to rely on tests. If negative tests are unreliable then the same can be said for positive tests as well.
After all it's been said over and over that the bands only represent exposure to BB.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
A pos. is a pos. I do not believe in false positives.
But I do believe there are many different combination's of infections and immune systems that make the difference in say
someone who gets Alzheimers vs someone who has MS or Autism.
But I believe they are all caused by the same proteins.
Another words--it is only dependent on what the proteins have melded with
is that which determines how and when it is exhibited...
If you look at the incidence of Autism/MS/Alzheimers alone you will see we are a very sick world. And there are lots syndromes besides.
We need lots of new antibiotics and tests that work.
-------------------- 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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"But I do believe there are many different combination's of infections and immune systems that make the difference in say
someone who gets Alzheimers vs someone who has MS or Autism.
But I believe they are all caused by the same proteins".
This gives me too much food for thought... Our LLMD told us that approx 65% of the people he is treating for Lyme also have MS. Consequently, at the same time my husband tested Pos for Lyme he was also diagnosed with MS. We have no idea how long either has existed, which came first blah blah- but we suspect the MS symptoms came out as a result of a recent Lyme infection, or perhaps visa versa??
It's all so very confusing... my heart goes out to everyone! Thanks for your comments and sharing!
really clueless
-------------------- Change is inevitable Posts: 77 | From France | Registered: Jan 2011
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Makes a lot of sense Pinelady.
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