LymeNet Flash: time between stages of Lyme disease

This is topic time between stages of Lyme disease in forum Medical Questions at LymeNet Flash.

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Posted by VTstarchi on :

Can anyone tell me the timing between the 3 stages?? years,months? I have had problems for many years now, mostly severe fatigue,muscle aches,joint pain, lack of concentration.. etc, it has been getting gradually worse.. have been treated for anxiety, depression, arthritis..etc.. in the last 6 month the fatigue has become unbearable, then I had a spell and spent 2 days in the hospital, with numbnessin my face, leg, arms I had facial drooping,headaches,vision problems, speech,& memory.. They did MRI,MRA's, EKG, Ecko Cardiogram and numerous other test.. everything was negative,, as was normal blood work. They original thought mini strokes or MS.. but still they have no answers.. I have been out of work all this while, and I am unable to function normally on a day to day basis.. Am I wrong to think here that they should be testing me for Lyme disease? and the reason I am asking about stages as my husband and myself used to do alot of camping and hiking in national campgrounds and wilderness areas but I am going back maybe 4 to 6 yrs... Does anyone have any thoughts?
Thanks

Posted by HEATHERKISS (Member # 6789) on :

Sure sounds like Lyme to me. Find a Lyme Literate Doctor in your area by posting under SEEKING DOCTOR.

in your heading write "seeking LLMD in VT"

You explained alot of symptoms that are very typical of Lyme and what I've experience.

I've been on treatment since January and have been feeling much better.

Heather

Posted by VTstarchi on :

Thanks for the reply Heather.. I will do just that.. I was starting to think I am losing my mind.. along with everything else..

Posted by duke77 (Member # 5051) on :

There really is no cut and dry time frame for the lyme stages. It could be days, months, or years. I feel I have had it for atleast 8 years, two years ago the symptoms got bad enough that I had a clue as to what I had. Some people have had lyme for 20 or more years so there is no set schedule.

Posted by cbb (Member # 788) on :

VTstarchi, welcome to LymeNet.
Most of us do not have a medical background, but will share what we've learned from our experiences with Tick-Borne Diseases (TBDs).

No, you're not losing your mind, though it might seem like you are.
Every symptom you mentioned could be caused by Lyme and/or co-infections like Babesiosis, Ehrlichiosis, Bartonella.

The progression of TBDs can be influenced by the strength of your immune system, the strain of bacteria, if co-infections are present, and length of time tick was attached.
Longer attachment time allows more bacteria to enter the body. As they multiply, you have a higher bacterial load in a shorter time.

Lyme is similar in most people, but at the same time, it is different in everyone.

You definitely need to be evaluated by a Lyme Literate Med Dr (LLMD) - ASAP.

Your tests have ruled out a number of possible diagnoses (which is good), symptoms are typical of Lyme, & you were in areas that ticks would be present.

Another reason it could be Lyme disease is that you have more than 3 systems of the body involved (neurological, joints & muscles, eyes, etc). A LLMD in New Jersey told me that this is a red flag to consider a Lyme diagnosis!!

If you're going to be tested, be SURE to use one of the labs that specialize in Tick-Borne Diseases:

IGeneX in Calif www.igenex.com
(800)832-3200

Medical Diagnostic Labs in NJ www.mdlab.com
(877)269-0090 toll-free

Bowen Research Lab in Florida www.bowen.org
click Lyme Research

Go to www.ilads.org
"Basic Info" - should be read by everyone!!
Note #5-8: very important facts about problems with testing for Lyme.
www.ilads.org/burrascano_1102.html
Print "Diag Hints & Treatment Guidelines..."
32 pages of excellent info written by one of the best LLMDs.

Be sure to read about "Co-Infections" on pages 4-5 and 20-24.

Read "When to Suspect Lyme Disease" http://cassia.org/essay.htm

Keep in touch & ask as many questions as you need to.

[This message has been edited by cbb (edited 04 July 2005).]

Posted by sweet pea (Member # 6495) on :

Hi,

I live in VT (obviously). There is only one LLMD that I know of in VT, and he's not that far from you. Email me privately and I'll give you his name and phone number. There's one in upstate NY that I can tell you about. There is also a VT support group if you are interested in joining: http://www.vermontlyme.org/whoweare.htm

Take care,
Paula

Posted by lymiecanuck on :

Hi,

I went neuro like in my teens, then the neuro stuff calmed down, and was more like fatique, muscle pain lethargy, anxiety etc. There were neuro symptoms too for years but not as severe as my avalanche of symptoms at 18.

Years later after my son things got way worse, but would calm down, then the worse and calm down and I would have a monthly flare which I thought was severe PMS, then bang down I went with severe neurological symptoms throughout nervous system that was major stage 3, as far as I am concerned end stage lyme disease.

I was also infected throughout my organs and had mny internal body pains as well as neuro stuff bigime.

Of course all this time there was no treatment, except short term abx for "infections", like chronic bronchitis, ear infections, etc as I didn't know i had lyme until 2003.

I beleive I have had it all my life, but was bit by many tics and fleas at 16, then again at 30, these are just the ones I know about.

Lyme is defintily weird like that. Of course, alot of what goes on in early stages we blame ourselves for at least I did. Saying things like, I don't eat well, enough, need to exercise more or less, or blame my attitude, or I am just like that must be genetics etc.

Take Care
Lymiecanuck

Posted by Lymetoo (Member # 743) on :

Welcome, VT! here's your homework!!

Treepatrol's links http://flash.lymenet.org/ubb/Forum5/HTML/000569.html

Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

The cause and spread of Lyme http://flash.lymenet.org/ubb/Forum1/HTML/032259.html

More info: http://www.ILADS.org/

Lyme Wars http://www.wildernetwork.org/Lyme_Wars.html

Lyme Disease State Info http://www.lymeinfo.net/support.html

Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

http://www.anapsid.org/lyme/matthewgoss/index.html

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu

Posted by VTstarchi on :

want to thank you all for your responses, right now I am unable to read and comprehend much of these sights you are sending me too.. I have been spending much of my time in confused state, I cannot concentrate and would love to crawl into a whole somewhere and hide, but know I need to help myself as my regular DR, and neurologist have found no reason as to why I am experiencing these problems.

Posted by ImLymed (Member # 7495) on :

You know that pisses me off every time I read something like this and most dr don't have a clue about Lyme!

I've been and am still going thru it !

I've printed off a 2" stack of info for my
dr and the last time I was in to see him I asked if he had read any of it.

His response was, yes a little, but I'm busy! If he or any family member had it I bet he'd be burning the midnight oil!

Sorry for carrying on, but in this day and age there is NO NEED OF IT!

I better sign off now too lower my blood presure.LOL

ImLymed

Posted by ICEiam (Member # 7519) on :

VT, I am so sorry you are having to experience this horrible disease. It sure

sounds like you are starting on the Lyme Hell road. My daughter had all the tests

known to humans during the years before I figured out she probably had Lyme 6 years

into it. After 8 more years I finally got her diagnosed!! I did 7 years of research

before I could find a doctor to beleive me that she needed a Western BLot test done and

not a worthless ELISA sent to the Mayo clinic or some other one that does ELISA

tests. She had at least 3 negative ElISA tests. I am sorry, this just makes me

totally go beserk that these doctors are so misinformed. People are being misdiagnosed

daily and put off as being "mental" just because the doctors refuse to come our of

their "box". GRRRRRR, I am sorry for carrying on, it's just that it gets my

dander up when I hear of things like this happening. Don't forget, this disease can

be transferred sexually and to an unborn baby too, so be careful!!!

Everyone has given you great advice. Find a Lyme Literate MD ASAP and good LUCK!!

------------------
ICEY

IDAHO LYME SUPPORT GROUP
[email protected]

Posted by groovy2 (Member # 6304) on :

Hi VT
Sounds like your docs are stumped--
Definitly look into lyme as being cause.

Lyme can come and go alittle
but after awhile it will mostly stay.

You will find Good info on lymenet.

Read Dr. Burrascano info on newbie link
it is written well and covers alot
of what you need to know--Jay--

Posted by McCabeoceancity (Member # 7562) on :

I just pulled this site from google because just removed tick from son who had Lyme 10 years ago when 5yr., Never found tick or had rash but joint pain. I wanted lastest info. When I read this post it was exactly what I went through 1st week of April. No result either. My son that had Lyme has been testifiying about mercury in vaccine's which new research shows start autoimmune problems.
After his first round of shots, when he was three months old, he developed flu-like symptoms. At nine months, within four hours of getting the vaccines he was in an oxygen tent in the hospital where he remained for several days. THe 18 months that follow he had one strep and ear infection after another. He was sick all the time. At five-years-old, after receiving DTaP, Polio, MMR immunization on the same day, Alex developed chronic health issues. He was diagnosed with Lyme disease. And at seven he had mono and required another hospital stay because he was so sick and needed IV antibiotics. Within months of his eighth birthday he was diagnosed with Supraventricular tachycardia (SVT heart condition). A few months later Alex developed an uncontrolable neurological tic where he kept turning his head to one side. He has severe allergies, and permanent joint damage. He is partispating in a study measuring metals especially mercury& copper in his body. We(Parents) & 3 siblings had to give samples. since Mercury goes to fatest part of body quickly( brain) doesen't show up very well in blood, so they check the levels of the things heavy metals affect,i.e. zinc,slenium etc. other metalw/ blood(high mercury usually causes low zinc etc) and check hair,urine and stool. If you do not have a problem excreating metal you should have high levels in hair because your body is working correctly to rid, if levels low or can't find body not getting rid as should. My symptom and the symptoms you described are very similar to Minamata Disease a syndrome named after a bay in Japan where 1st diagnosed. There are books and a new book Evidence of Harm by David Kirby that explains what the cheap preservative that contains mercury causes. I kept hearing about Autism and Vaccines and some sort of link but we didn't have anything like that just chronic health problem, so I wasn't interested. After my son show me studies and info where different agencies agree metal toxicity causes autoimmune, neruological problems, allergies, asthma, add,adhd,alzheimers. I became more interested. Didn't know heavy metals were in flu shots we get every year. Government recalled it in over the counter products like contact solution and nasal sprays in 1999 & 2000 but just requested reduction or removal from vaccines.( flu shot has 25mcg of mercury) Maybe everyone else knows all this but, it came as big news to me. The new info even since book Evidence of Harm is amazing. Even if you think too far fetched as I did test aren't overly expensive $29.00 for hair $220.00 unrine, blood varies . It does explain why 1 out 6 kids according to Dept. of ED. has issues from allergies to add/adhd, delayed speech etc. Would explain a lot with all current health problems that have become common place with people of all ages.

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