posted
Hello everyone! I'm new here. This site was recommended to me by a fellow lyme member. I have been having a lot of neuro sx since May 07. I was ill with the sx for about 5-6 months and then they gradually went away without any kind of treatment. Was fine for about 18 months and now they are back and worse this time round. Currently I've now been having sx for about 2 months. Here are my sx:
Dizziness (like rocking in a boat) Brain Fog All over body twitching All over body weakness (especially arms) All over pain (espcially in neck/shouders, hands, arms, and feet. Burning in shins and feet Occasional hand tremors (very very mild) painful lymph nodes (no swelling) in armpits and groin Ear aches bladder buring and urge to go cold feet/ sometimes blue in color
THERE is a lot!! However, they aren't all always there. They come and go and each day is different.
I have been bit by ticks and been exposed my whole life as we are an outdoorsy family and always outside camping, fishing, hiking, etc...
I've seen two neuros in the past two years who say it's def not MS. I've had two normal MRI's with and without contrast and my neuro exams are normal besides having brisk reflexes. All blood work is normal besides showing a past infection to EBV.
I am curious if lyme can remitt and then come back as my sx did?
I just got the WB done by Quest that came back NEG. However I did show Reactive to band IGG 30 and 41. I've heard that the testing isn't reliable with Quest and that I should have a test by Igenex.
What does this mean to show REACTIVE on bands 30 and 41? Could I still have a chronic lyme infection?
I don't know where else to turn? I'm so confused and scared!! I hope this is noT ms.
posted
I forgot to mention that my toes feel slightly numb and my hands fall asleep really easily and tingle. Also I've noticed my heart pounding really hard and fast lately. Also my joints in my hands, elbow, and ankles really hurt. Especially my ankles. They get sharp stabbing pain.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Yes, Yes, and Yes.
If I were a LLMD I would start treatment.
It is just like I was.
They are great here to help you find a LLMD.
But I would not wait like I did for so long telling me nothing is wrong with you.
I would go to doctor with WB explanation posted
here and demand a low dose Doxycycline started
now and take for 4 weeks. I would also get heart
checked out as it effects nerves -same nerves
that cause MS symptoms and the heart if full of
them for electrical conduction. If it were me
that would make me feel better knowing if EKG is normal.
I would also, If you still require more proof you
can go off for 2 weeks and retest with Igenex.
Until you can get to a LLMD.
-------------------- 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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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Lyme is like that. Cycles constantly.
What joints were hurting me in the am would not necessarily
Be the joints that hurt two hours later.
You certainly sound symptomatic.
There are many good symptom lists here, but the one I used
Came from canlyme.com.
Print out the symptom list. In the meantime, go to
Seeking a doctor section and put your city and state out there.
Someone can direct you to a Lyme Literate Medical Doctor.
Our doctors try to rule out other possible reasons for symptoms too.
I had to have a nuclear stress test done due to "heart" issues.
It was normal, but Lyme can affect your heart.
Welcome to the board.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
One if the symptoms of Lyme is that it seems to come and go. It moves around to all different parts of the body.
Since MS has been ruled out and you have had other testing, plus two bands that possibly indicate Lyme, I would go to an LLMD. Your symptoms indicate that you may have Lyme, IMO.
Geneal gave you great advice. The canlyme website is unbelievably helpful. My LLMD includes it in his new patient package of information.
Both Pinelady and Geneal suggested an LLMD and I agree! I have been sick for years and it wasn't until I saw a LLMD that I got a proper diagnosis and treatment. Plus, a LLMD will order the Igenex test and interpret the results correctly.
Oh, and the other thing to remember is that Lyme is a clinical diagnosis. Blood work is only the second part. Reaction to treatment is the third part.
If you go to "Seeking a Doctor" and ask for a referral to an LLMD in your area someone will help you.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
Thanks for your help everyone!!! I have had an EKG that was normal.
What exactly does it mean that I had REACTIVE bands on LGG and 41? Does this mean I have had Lyme in the past and still currently have it? It's all a little confusing right now. I guess if I showed REACTIVE bands on the Quest lab, I've heard that most likely more will show on the Igenex.
I am currently living in the UK due to husbands military orders and have found an LLMD an hour from where I live. However I'm not sure about them using IGENEX? Maybe I should get my Reg dr to order the Igenex first and then see the LLMD? Or What? What do you suggest?
I was on antibiotics for a sinus infection a few weeks ago. On the third day my brain fog and dizziness got worse. I quit taking the abx. But... my PCM ordered the WB only a few days after being off the abx. I've just read that this can tamper with the results?
I should probably retest anyways and I will do so with Igenex. Hope my dr goes for it! He pretty much blew off the lyme idea when he read that overall I was NEG. Didn't seem interested that I had 2 REACTIVE bands! From what I've read, wouldn't just 2 REACTIVE bands by IGENEX be considered positive by their requirements???
I guess I just need to get the test done and go from there! Thanks for your helP!!
Betty's suggested POSTING GUIDELINES . 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 ``TWICE`` after each paragraph; we need that space for comprehension.
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. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007). . . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...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..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information. -===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present. ==========================
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"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. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. =========== i'm going to try to post a link here with info on SUCCESSFUL LAWSUITS WON ON LYME DISEASE from www.lymenet.org site! look on LEFT side :legal resources" !! all WINNERS!
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posted
kare, we recommend folks post in SEEKING DR. forum along with their story. so please copy what you typed above; go to seeking dr. forum using FORUM HOME to find it, and PASTE it there.
subect: colorado llmd needed.
go to lower left hand corner and mark box to receive all replies; click send! done
this way you get colorado input which we llmd list holders are not normally from the state you are from ok! THEY have most current info over us with list names only
check your profile above for my pm w/colorado names i have!
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posted
I pretty much had every symtom you describe plus many others such as headaches,neck and back pain, sweats,blackouts ,heat intolerance ,muscle pain and weakness, edema in shins and feet,etc...
Reg. docs and neuros thought possible MS for along time , but turns out to be Lyme and babs and probably bart also.I would recommend an llmd for what you are describing !!! Good luckto you!!!!
Posts: 97 | From West Chester ,Pa. | Registered: Aug 2006
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posted
just thought i would post my thoughts for ya. i was dx/tx for "lupus type" autoimmune disorder for over 8 yrs.
each time during pregnancy i felt great as far as symptoms, just hard pregnancies. then after delivery bottom would fall out, and everything was back and worse each time
was dx then as "atypical MS" by Rhum while awaiting the work up by my new neurologist
MS was neg. and then he tested for lyme...so ...now we know this has been lyme
no way to know for sure how long. and with immunosuppression for yrs. things are rough
and hubby recently tested +, so did his mom, have not tested kids yet. still tryign to do my homework on that one
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
"each time during pregnancy i felt great as far as symptoms, just hard pregnancies. then after delivery bottom would fall out, and everything was back and worse each time"
You feel great because progesterone is pumping out at 400mg daily. (Normal is 20mg). At childbirth, your estrogen surges, and progesterone drops.
It's best if you can, use a bio-identical progesterone cream every day. Even if you are a man (10mg). Our progesterone gets used up FAST when under stress or chronic illness.
If you are pregnant, start using it the day after delivery and it will help that "crash"
I'm not a doctor, but I have done a lot of research and I have had my daughter on cream since she started getting ill. It's been a big help.
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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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