posted
Well I guess I'm just brain dead because it took me over an hour trying to find the post button.
Not sure where to begin. I'm 45 married with 2 boys. I have hypothyroidism (secondary) which means my TSH was never high in fact it was only 2.4 but I have severe symptoms and my Free T4 was at the bottom of range.
I was treated Dec 2005 with steroids due to having hypo adrenals. I remained on this for about a yr then began to wean off. This wasn't easy to do I had to take it really slow and it took me over 8 months to do this weaning down from 20 mgs a day.
In this time I also gained 40 lbs and now take Metformin 1500 mgs a day to control high glucose.
We have been working on thyroid and getting it adjusted to alleviate symptoms. The worse being weight gain, extreme fatigue, marked weakness in arms and legs, joint pain.
Doctor felt after working on this and being pretty stable on my thyroid meds that I should start to feel better but it wasn't working.
Feb of 2007 I got Mono never had this before so it was a surprise that at age 44 that this was the first go around. I was pretty sick. 6 weeks after the Mono I came out of remission for Cluster headaches and had a cycle of them for 8 weeks. Around this time I had come down from the mountains in PA where deer were in the yard everyday but this was in Dec/Jan. I first got sick about 2-3 weeks after coming down from there.
I do remember about 8 yrs having been taken to the ER with a high fever (I don't run fevers) and large welts all over my body with a rash but not the bulls eye that everyone talks about. The rash was put down as unexplained.
Now here's my questions.
I just had my lyme titer done and got the results last Tuesday. We didn't do an Elisa my Dr. did a WB and it said IGM band 23 and 41 reactive Burgdorferi AB Positive. Does this mean I have lyme. I have really bad joint pain and extreme fatigue that just won't go away. My IGG were Negative.
I was put on Doxcycyline 100 mgs 2 x'x a day for 30 days.
My Absolute Monocytes were also low at 166 what ever that means. My WBC has dropped from prior CBC's 6.9
Could I have had this for years and it just went dormant? Could I have had this instead of Mono even though my Monostat stated I had Mono?
Doctor said by my labs it's recent and in time if not treated I would turn positive on the IGG also. He feels by the test that it's been 6-8 weeks. Never a rash.
I live in Philadelphia and the deer population here is high.
Can lyme cause weight gain even when I've been pushing myself to power walk 2.25 miles a day and still haven't lost a lb.? Can it interfere with thyroid function? Also what I noticed with my labs is my Cortisol was always around 12 even on Cortef yet 5 months off of this my Cortisol shot up to 20 which is unbelievable for me. It's down to 15.4 8 months out.
Thank you, Sami
Posts: 17 | From Philadelphia, PA | Registered: Jun 2008
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posted
Welcome to our world! Sorry you are here, but as far as anything Lyme related, it is the best source you will find.
I have MOST of the symptoms you are describing, and have had since I was 18 (31 now). Hypothyroidism, hypoadrenalism, very high EBV, fatigue, joint pain, etc.
I finally had a positive WB late last summer. You are fortunate that you have had some positive bands because so many don't.
If you will look at the top of this page at the stickies there is an explanation by Dr. C of WB's. There is also a newbie packet posted by Betty G that has LOADS of valuable information.
At least your Dr has given you some Doxy, but like most here, I will tell you that the dosage is on the low side, even if it's a brand new infection (which I hope for your sake it is,
so many of us are chronic because we couldn't get diagnosed) There will be MANY more who will acquaint themselves with you shortly.
-------------------- TL Posts: 365 | From OK | Registered: Jul 2007
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When you read it you will see that most likely you DO have Lyme. Band 23-25 is specific for Lyme.
The link also speaks to the question of whether or not this is a current or past infection....not that it matters all that much.
(That part is in bold.)
It's VERY possible that you've had this a long time. Many here have had mono .. that could be a misdiagnosis...don't know.
Lyme suppresses the immune system so that things like EBV can raise its ugly head.
You need to locate an LLMD and get tested for coinfections as well.
and by the way, your doctor most likely used a less than quality lab for Lyme testing. If you were to be tested thru Igenex Lab in CA, you would probably have several more bands show up.
Thank you all for your words of encouragement. I know something is very wrong I just don't know if it's the Lyme or the Thyroid.
Prior to going on thyroid meds I was tested for Lyme and it was negative so that is when we said it had to be thyroid even though all of my symptoms never went away.
I also remember that the reason I pushed to see the Doctor was I was getting so weak in my legs and I couldn't retain anything that I was reading. Not to mention I had a lot of joint pain.
Come to think of it I still have those symptoms but blamed it all on thyroid.
Here's another question. Once I test positive will I always be positive for lyme?
How will I know if I'm cured or if I need more treatment?
I had been on antibiotics two times for other things within the last year before that I never was on antibiotics and I had strange reactions to them. I got so sick on them out of the blue that I ended up in the ER. It's almost like I feel now being on the doxcycyline. I've been on this now since Wednesday. Will you get worse before you get better?
I see that there is one doctor pretty close to me. How do I go about seeing them. I have Keystone HMO so do I need to get a referral?
The Doctor that I am seeing for my thyroid I pay out of network because my HMO doctor is a DUCK!
Is there a way to tell just how long you have had lyme? How will I know if this was the root to all my problems in the pass?
Sami
Posts: 17 | From Philadelphia, PA | Registered: Jun 2008
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posted
I know your head is swimming, but do go to the link above. It speaks to the issue of whether or not you've had this a long time.
Just go thru and read everything in bold for starters.
If you'll notice, Geneal's WB was positive on the IgM, just as yours was. According to Dr C in the above link, IgM CAN mean long term Lyme.
Read why.
And yes, you do need to be on more than 200mg of doxy per day if you want to lick this thing.
That's why you need an LLMD.
Also.. your very first test was likely negative because an inferior lab was used at that time also.
Read my story below. You'll see that Lyme can be dormant for years and years.
Keep reading!!!
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
welcome; so glad you found here; and sorry you joined our CHRONIC LYME club!
cover up completely with doxy; you'll sunburn easy and especially when driving so gloves are needed! more is explained in my newbie package.
thanks for nice long detailed note to us broken up!!!
WELCOME, would you like a FREE copy of my newbie package of 124 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
**********************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
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. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
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posted
I suspected my mono wasn't mono and investigated the monospot.
Either can cross react, meaning that someone could have Lyme and test positive for mono or have mono and test positive for CERTAIN Lyme bands but not others.
Or you could have had both, as someone else mentioned.
But to make a long story short, your monospot could have been false positive.
Posts: 129 | From Virginia | Registered: Feb 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Your doctor is wrong that your IgM would turn to IgG in 6 weeks. Most chronic Lymies are IgM positive. In fact, my LLMD told me it was not typical that I was IgG positive.
Also, as mentioned before, your dosage of doxy is too low and too short.
Your thyroid can be messed up due to Lyme .... mine is. Mine was borderline low across all levels. I take Cytomel and Sythroid. It has helped a lot, but my T3 is still low.
I did not have the weight gain problem though, even with the low thyroid, but something like 80% of people with Lyme gain weight.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Lyme Disease is a CLINICAL DX and can not be proven/disproven by a simple blood test.
Next many people who have Lyme also have co-infections, or other blood borne parasites that they got from the same tick bite; and or another tick bite. These are equal to and or worse than Lyme.
Please get tested for co-infections; Babesia, Bartonolla, Etc. Just search on co-infections here.
The WB test is a good indicator of Lyme and you would not have positive antibodies for 41 if you were not exposed to Lyme.
Next 30 days Doxcycyline 100 mgs 2 x'x a day will not CURE your Lyme.
You may however develop one of the best clinical tests for Lyme -- and that is if you develop flu like sysmptoms; or feel really lousey after taking the antibiotiucs.
This is call a Herxmeyer Reaction (Herx) and is well documented and described by those suffering with Lyme. This is caused by the die off of the bacteria and the toxic reaction inside your body.
I have been told by many that all else equal-- if you take Abx and herx you either have Lyme or somthing similar that we dont know of yet.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
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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. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
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