posted
I've been reading here daily for a couple years and have learned so much from all of you! I've never mustered up the courage to post a lot about myself. But now, I've gotten to the point where I feel so alone and discouraged (everyone around me seems so healthy)--I'm making myself try to write something coherent.
Briefly, I'm a forty year old mom of one who probably got infected 15-20 years ago (being from the Chicago area, I used to vacation/camp all the time in Wisconsin).
I've had daily headaches, gerd, insomnia, endometriosis, depression/anxiety, allergies, infertility, etc. for years but lived with everything okay until a year and a half ago when, out of the blue, life seemed to fall apart.
My main symptoms since then:
-muscle twitching -brain fog/feeling stupid/bad short term memory -insomnia/fatigue (great combination, eh? ) -muscle pain/aches -very low muscle endurance -lower back pain & stiffness -bulging L5 S1 disc -daily headaches -depression/anxiety -tremor (especially bothersome when holding something with my thumbs and index fingers)
My test results:
First IGenX
IGM **39 IND **41 + 66 +
IGG **34 IND **39 IND **41 +++ 58 ++
Second IGenX (after antibiotics)
IGM **23-25 IND **34 IND **39 IND **41 ++ 58 + 66 ++
IGG **39 IND **41 +++ 58 ++
Other tests: Bowen 1:128 Complement, CH 50 high C1q immune complexes high HHV6 high Parathyroid hormone low Platelets high and climbing!
I've seen llmds (mine closed their practice in July), and done IV antibiotics. I'm currently on IV zithromax and oral flagyl. I take a lot of supplements, etc. and try to eat healthy.
To all you who have read this far--I thank you. I've gotten to the point where I'm desperate to know if there's anyone like me (what do you do with someone like me? )
Sometimes, I just don't know what's wrong with me--will I ever get better?? Is there anybody out there like me?? Anybody at all?
Thanks for reading.
Laurie
Posts: 136 | From North Carolina | Registered: Apr 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Laurie, I think we're all like you.
We all struggle with being sick in a healthy world.
Are you starting to see improvement?
I'm also in my 40's and have been sick four about four years, this time ... I've had Lyme since I was a child.
You'll get better ... if you don't have a new LLMD, you should find one to help you get there.
I have a great time with fatigue and insomnia, too.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bettyg
Unregistered
posted
gosh, ladies; you are both old enough to be MY DAUGHTERS!
yes, i relate to majority of things shown above. MANY of us out here in the lyme world.
thanks for finally speaking up and feeling confident to start; now you'll become a regular.
best wishes; glad you have been reading along as well all these years.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Welcome Laurie!! Sounds like you're headed in the right direction...those are some mighty lyme-ish lookin' western blots! Have you found a new LLMD?
What's your co-infection status? You mention headaches, a hallmark of babesia.
How long have you been treating?
Sometimes it can be a LOOONG road back!!
If your coinfection tests are negative but progress seems slow, a test from Fry Labs might be helpful -- see their info under the newbie links. Remember most labs test for only 2 of 16 strains of babesia.
Keep treating. Sounds like you're on the right track, and you're in good company here!!
Make sure and add a good probiotic like Theralac at least once a day!!
Post often!!
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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I was diagnosed about 7 years ago and have been on anti biotics ever since.
I have seen some good results but not even close to a cure yet as far as I'm concerned anyhow.
It's a tough battle but I tell everyone around me that I will never give up. I have come close to saying that's it but I always dust off and get back to the program.
Hang in there.
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
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posted
Try not to feel alone (I know, it's hard). I have many of your symptoms, too. Lots of muscle twitching, even in large muscles. Legs, hands, face. Tingling.
Also get internal vibrations which is my least favorite symptom. Lots of back issues - SI joint, muscle pain.
Anxiety definitely brought on by Lyme. Insomnia an issue although better once I started on Zoloft for the anxiety. Adavan also helped me sleep before Zoloft.
My symptoms are worse when I don't sleep well. Maybe you experience that, too. So do try something to help you sleep - you heal when you sleep.
Keep taking your abx and seeing a LLMD. Co-infection testing from Fry would probably be good - at least you will know if you're dealing with more than Lyme.
Good luck. PM me if you want to chat more, I'm always on the computer.
~megan
Posts: 257 | From Connecticut | Registered: Oct 2007
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posted
Yes, I'm also like you. I'm 42 and have had lyme for 11 years. Insomnia realy bad the past 2 weeks. I think I had 3 days with no sleep then about an hour or two a night, up and down, up and down. Matter of fact, I fell asleep at my computer twice this week!
I also feel so alone sometimes, and thats when I come here. It hard for our families to relate. They see what we go through and it is difficult on them, but it is not them. I have not been able to work and somethimes it feels like I contribute nothing to this world. That's when we have to shake ourselves, and realize we give to our friends and families every day.
We just have to keep trying and really appreciate the good days. I am determined I will get better!! I have put this stuff in remission before, and I will do it again!!!
Hang in there, we are all here for you.
-------------------- Lisa Hines Posts: 18 | From Orange Park, Florida | Registered: Jan 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME LAURIE*)!*)!! !*)!*)!*)!*)!*)!*)!!
Originally infected in Wisconsin??? There is a forest strain there that will not even test positive on most Lyme tests- see as follows- there is also Ehrlichiosis there which can be seornegative even in acute cases- so if you have not been on 400 mg Doxy for 3-6 months I would ask your LLMD about it!!! Could be an oversight wihch could cost you if you have E!!!
Best wishes, Sarah
1: J Med Entomol. 2005 May;42(3):457-72.Links
Presence of Borrelia burgdorferi (Spirochaetales: Spirochaetaceae) in southern Kettle Moraine State Forest, Wisconsin, and characterization of strain W97F51.
Caporale DA, Johnson CM, Millard BJ. Department of Biology, University of Wisconsin-Stevens Point, Stevens Point, WI 54481, USA.
Lyme disease, caused by Borrelia burgdorferi Johnson, Schmidt, Hyde, Steigerwalt & Brenner; babesiosis, caused by Babesia microti Franca; and human granulocytic ehrlichiosis, caused by Anaplasma phagocytophilum Bakken & Dumler have been reported in Wisconsin, mainly in the endemic areas of the northwestern part of the state.
People exposed to blacklegged ticks, Ixodes scapularis Say, from this region can potentially contract one or all of these diseases concurrently.
Within the past several years, there have been cases of Lyme disease reported from southeastern Wisconsin, an area that contains deer, mice, and similar vegetation found at regions with high endemicity.
However, past white-tailed deer surveys suggested no existence of I. scapularis in southeastern Wisconsin.
However, in 1996, we identified questing adult I. scapularis in the southernmost part of the Southern Kettle Moraine State Forest, Walworth County.
To determine whether an established population of I. scapularis exists in this region, we performed a detailed survey of the abundance of host-seeking I. scapularis adults and the presence and abundance of subadults feeding on white-footed mice, Peromyscus leucopus Rafinesque.
We also tested for possible infections of B. burgdorferi, Ba. microti, and A. phagocytophilum in ticks and B. burgdorferi harbored by mice.
In 1997 and 1998, a total of 249 P. leucopus mice and 118 questing adult I. scapularis ticks, in addition to 157 larvae and seven nymphs feeding on mice, were collected and their locations were recorded from the Nordic trails of the Southern Kettle Moraine State Forest.
Only one P. leucopus and its attached engorged I. scapularis nymph were infected with B. burgdorferi, whereas none of the engorged larvae attached to mice were infected.
However, 4.2% of questing adult I. scapularis were infected with B. burgdorferi.
The abundance of questing adult I. scapularis was 1.6 ticks per hour. The prevalence of subadult ticks on mice was 27%, with a mean intensity on infested mice of 2.0. I. scapularis adults were not infected with either Ba. microti or A. phagocytophilum.
A unique strain of B. burgdorferi s.l. (W97F51) was discovered, showing 33 nucleotide substitutions and one codon insertion in a 567-bp fragment of the OspB gene, compared with Borrelia bissettii (strain Ca389).
The sequences of ospA, ospB, ospC,fla, and rrs genes and the rrf-rrl intergenic spacer region were compared between W97F51 and other B. burgdorferi s.l. species.
Although W97F51 was most genetically related to B. bissettii, the genetic identity of W97F51 was less than that of B. bissettii conspecifics.
This study documents the existence of an established population of I. scapularis and the presence of B. burgdorferi with a novel strain in southeastern Wisconsin.
PMID: 15962800
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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tailz
Unregistered
posted
I've had every health problem you listed, except for infertility (but who knows since I had a hysterectomy). I did have endometriosis several years ago, just prior to the hysterectomy.
I also wake up every morning with yellow junk in my eyes. The more the heat runs, the more junk in my eyes. I have both Lyme and babs, though I suspect that they are merely secondary to a primary allergy to electricity - specifically, I have electrical sensitivities.
I would suggest you buy a meter to measure the electromagnetic fields in your house. I have a Trifield meter, but I really need to get a more sensitive meter to measure radiowave/microwave frequencies.
The Trifield did pick up high magnetic fields in my home, but I have been paying attention to my symptoms and I actually feel pain when my neighbor uses his cell phone - even though the Trifield is not sensitive enough to pick up the microwaves from this great a distance with this particular meter.
If I can get a more sensitive meter, I have no doubt this is what I'm feeling.
Google 'electrical sensitivities', 'microwave sickness', 'electromagnetic hypersensitivities'. I do not believe I will improve until they turn off cell phones and wireless. I think this is why 2005 and 2006 were the beginning of the end for me, too.
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Laurie,
Welcome to posting! Unfortunately, your story is way too familiar. I had lyme 17 years before diagnosis, now it's been 20 years of living with it.
For the muscle aches, I've been doing much better with muscle pain since starting tizanidine (brand name Zanaflex). I call it my miracle drug.
My headaches have gone away since discovering I was allergic to soy and cutting it out. I happened to find that allergy through a saliva test from Diagnos-Techs, but they only test allergies to soy, dairy and egg.
I'm a huge proponent of an elimination diet to figure out if foods are triggering your headaches. I know my brother's fiance used one for migraines.
I have motor tics, which is different from twitching and tremors, but I think could all be related. They seem to do better with large doses of B-12 and folic acid. I also think Omnicef may have helped, but I noticed they return when I don't take enough B-12.
Good luck. I hate this freaking disease and hate whenever I hear about another person suffering.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
when i read stuff like this i am so thankful for this board and for the computer that connects me to those who understand.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Thank you, all, for your kind words, advice & encouragement. I really needed that!! Sometimes, the whole 'lyme disease' thing feels rather surreal and since I don't have a positive test--I often wonder if it's what's really wrong with me!
It sure helps to have wonderful people like you to pick me up when I'm down. Thanks so much
Laurie
Posts: 136 | From North Carolina | Registered: Apr 2007
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I used to be like you. I got tons better. It took me the better part of 2 years to REALLY feel better. (I'm now four, almost five years into this) BUT
when I started out in 2003, I had INSURMOUNTABLE symptoms and just wanted to die. the thing is? I was too tired to get up and just go kill myself, so I didn't. I had
SEVERE migraines, vertigo, brain fog, severe neck pain, spurting nose bleeds, sleep paralysis, internal vibrations ( I called them body earthquakes), heart problems, etc etc. I couldn't string
my first and last name together for the life of me. I couldn't walk or brush my own hair. My life was NOT a life.
Now it is. Yes, I still feel "not so well", and somedays I feel downright BAD, but for the most part, i feel pretty ok. The culprit
for me having to treat so long seems to be a very undertreated coinfection of bartonella, so I am retreating that.
I went from being bed bound and not able to drive at all to in one day shopping, getting my hair cut, driving all over town, picking up prescriptions , etc
WHILE herxing and WHILE having abx in my system ( so the herxes are better too)
You will get there. Its a LONG road. Dont give up.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
You are definately not alone! I've been ill for about 10 years & the
doctors told me I had fibromyalgia for all this time. I just found out
that it's Lyme about 10-11 months ago. My Western Blot test was
negative, too. It happens - you aren't crazy. The tests are woefully
inadequate! Don't let the world get to you. It's not your fault you
are sick & the medical industry is corrupt or misinformed. We just
have to keep going forward as best as we can.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
No positive tests? The INDs are all on double-starred bands. Also other plusses are Lyme bands as well. And this is also a clinical disease, as in the profile of our symptoms and how we respond to treatments.
There are lots of different kinds of treatments that people are trying. It's a matter of studying them and thinking about which ones you'd like to try.
We may seem abnormal to the well world, but we're "normal" here, so welcome and keep posting and learning here...
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Yeah I think we all struggle with those feelings of being the only sick one in a healthy world.
What is the hardest to deal with is that sickness is supposed to be for a time, and then you either die or get well.
But with lyme disease, the misery can go on for years, and there is no quality of life.
I have been stuck at home for about a year treating lyme just waiting to "get well", which only God knows if that will even happen.
I think we just have to take one day at a time, and not expect too little, or too much. I have heard quite a few people in treatment say that one day they literally wake up and the lyme and all it's symptoms are GONE!
Thats what I am praying for..
By the way, whenever I feel like I have made no progress in treatment, I recall where I was a year ago...and if I am honest with myself, I can see improvement.
Sometimes the improvements are so small you don't want to count them....but look for them!
Best wishes, Noelle
Posts: 16 | From PA | Registered: Oct 2007
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