I am so desperate. I have been feeling crappy on and off since I was 14... I'm 20 now and I am going through a really really rough patch. I have had no life for the past two months... I am so desperate for some type of answer and I have been to so many doctors for some type of answer and I have found nothing. I have been going to what I thought was a very good internist who did an excessive amount of bloodwork but did not find anything.
I wanted to ask about the Lyme test. Back when I first started feeling bad, in May, the doctor did do a Lyme test. The results were normal. All it says is that my level was below .90, but it doesn't say exactly what it is. I got both IgG/IgM and Quant. IgM tests and they both say the same thing, that my level was below .91. However, I was on an antibiotic at the time because this same Urgent Care Clinic I was going to diagnosed me with mycoplasma pneumonia even though I really did not have any of the symptoms at all of it. Those tests were done through Labcorp.
I first was on clarithromycin and then doxy but stopped taking them because I was not feeling any better, in fact at the time getting worse. Now I am kind of regretting stopping taking them but I was so scared at that point that I did not want to make any of my symptoms any worse.
I then went to a neurologist who ordered a brain and spine MRI which came back completely normal. I've had three CBCs, HIV test, syphilis, thyroid panel, among tons of other bloodwork, an ECHO, several chest X-Rays, CAT scan, and other things. I also had an abdominal ultrasound which revealed an enlarged spleen. It wasn't enlarged significantly, the size was 12.9 cm in length.
I am not satisfied with the diagnosis of mono. I had mono back about a year ago and I know that what I have felt these years since I first started getting sick and what I felt during the time that I had mono.
Do you think that it's possible for me to have had Mono and also have Lyme disease? How do you feel about the test that I had? Was it accurate? Do you think that it could have been hindered by me being on antibiotics?
Symptoms (some of them have been persistent years, others have just now appeared):
Persistent Swollen Tonsils Back stiffness (mostly lower back) Stiffness in hands and legs Muscle weakness (more pronounced in the left side) Muscle twitching Depersonalization/Feeling of lack of reality/brain fog Difficulty concentrating and soaking in new information Bad short term memory, bad attention span Sometimes problems searching for the right word (I have actually thought back and noticed that I have had a slight problem with stuttering over the past few years) Depression Anxiety/Panic Slight tremor Light and sound sensitivity Bloodshot eyes Trouble swallowing Ringing in ears Tipsy feeling, need to sit down, feeling like I can't leave the house for fear of these feelings. Very hard to ride in a car. Lighheadedness Slight tingling in legs and arms Neck stiffness Fatigue Wake up early even when taking Lunesta. Needing losts of sleep and feeling tired even when I wake up
This symptoms come and go randomly. I have been dealing with the lightheadedness/feeling like I am going to pass out for a very long time, I would say three years or longer. The weird thing is I seem to have up and down spells. I will be okay for a while and then it will turn back to hell.
At this point I do not have a life. I have been home from school, have been on leave from work and am very scared because I am running out of leave time and am scared that I will loose my job. In the condition I am in right now I cannot drive or function really at all. I feel like I am not in control of my body, like I am on autopilot, like I am not in control of myself. It is so scary. I was taking Ativan to help with the anxiety and it helped some but I am not taking it anymore because I do not want to have to take some stupid Benzo just to function daily when I know that "anxiety" is not what is wrong with me. I am listening to my body and my body is telling me you are SICK and this is NOT normal.
The only thing that they have found really wrong with me as of now is my spleen is enlarged. I am right now taking Lexapro because when I was not feeling like myself when I was younger it seemed to help me get back to halfway normal but I still have had on and off problems since then.
So can anybody help? Do you think it's lyme? I have never seen a rash, nor a bite or anything of that nature that I have been aware of. I have been to doctor after doctor after doctor and they tell me nothing is wrong. I remember telling one doctor when I was younger that I "feel like I'm not here" and she looked at me like an idiot and said "what do you mean do you feel like you're not here?"
ask me any question you want. tell me any information you think might help! I feel like I am dying.
Posts: 1 | From Birmingham, AL | Registered: Jul 2011
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
Sounds likely that it is lyme imo. I was diagnosed and don't recall a tick bite or a rash. A good percentage of us don't. So that means nothing.
Your symptoms come and go, which is typical of lyme, and many of them fit the lyme symptoms which you can find a list of on this site.
Sounds like you had an ELISA test done which isn't all that reliable. You need to get a Western Blot done by Igenex. Tests 188 and 189. Don't even bother using another lab as the testing is unreliable as it is and Igenex is the gold standard for lyme testing.
You can order the tests kit yourself and bring them to the doctor to have him/her sign off on it.
You may have been experiencing a herxheimer reaction when you were on the abx. That is caused from the die off and it would explain why your symptoms worsened while on them.
Both of the abx you were on are used to treat lyme.
You should post over in Seeking a doctor and get yourself to an LLMD. Lyme isn't the only issue that needs to be addressed. You would also need to be tested for other infections that you can get from a bite. Babesia, bartonella, erlichia...You definitely want to see a Dr. who knows what s/he is doing.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
Sorry you are feeling so lousy, and without answers. Have you been tested for viruses?
I had Chronic Fatigue, prior to my lyme diagnosis, and some of your symptoms sound viral. Especially the lightheaded/passing out. Do you have low blood pressure? Enlarged spleens are commonly associated with viruses or mono.
Did you ever improve on antibiotics? Many of us realize a correlation between feeling better on antibiotics, and then pursue the infectious basis.
Muscle twitching,cognitive issues, light/heat/sound sensitivity, depression and anxiety as well as sleep disturbance could be either either illness, viral or bacterial.
Posts: 964 | From san diego | Registered: Oct 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Join us also on www.lymefriends.org. We have a lot of younger people who you can connect and chat with as an addition to Lymenet.
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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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Mono and lyme can go hand in hand. One opens the door for the other so-to-speak. Lyme can also masquerade as mono.
It's good you found us. There's a lot of info here. Keep your head up too. You're very young and if you get over the hump there will be a lot of good times left.
First, try to find a lyme literate MD. LLMDs are generally good at troubleshooting difficult cases even when lyme may not be the primary pathogen.
Good luck.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Your symptoms sound like typical Lyme symptoms, unfortunately, and your run-around the typical run-around. It's too bad we all have to suffer so much before we get clued in -
Besides testing through IGeneX, it's going to be important to get to a good Lyme doctor and start on treatments that will help you. As you find them, you will feel better. Keep reading here on lymenet to learn about the different kinds of treatments we all try.
For example, I am able to stop all Lyme eye symptoms, including light sensitivity, by drinking mangosteen juice, an anti-inflammatory juice.
There are lots of varieties in healthfood stores and online. I like the Ultra and Mango-xan ones. If you try it, go slowly and drink water, as it can be powerful.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
i am with you... same thing ... Docs cant seem to make it better. I am ready to die to be truthful.
Posts: 13 | From Mesa AZ | Registered: Nov 2009
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posted
I have had lyme and EBV(mono) for years and yes it's very possible. You probably have more infections than those 2 as well. I have had all the symptoms you listed at one time or other and have had most of the tests you've described at least once. They found lesions in my brain that were "MS like" and had given me that dx, even though I had only one or two of the actual symptoms. He called it"atypical MS" I believe.. Put me on copaxone, which suppresses the immune system. NOT what you need for fighting infections. Now I am having difficulty improving immune system. Watch out for steroids, and MS meds. I know it's scary on leave from work and watching your time run out with no answers from the docs. I've been there. Get to a doc who can help you and then you will find someone who believes you, can actually help you and understands all you've been through. That's the best feeling I ever had after the plethora of docs and BS I listened to.. Hang in!
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
While you are at it, you may as well run the other pathogen tests suggested on the Stanford website.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
tm,
So sorry you are so sick. Multiple infections such as viruses, mycoplasma, bacteria, fungus and Lyme and co. can be very difficult to treat and diagnose.
If you can't find a doctor to treat you, you have the option to take charge and seek alternatives to get rid of these infections.
Many on here have been treating for chronic Lyme with abx with little or no relief. I am not knocking abx at all, but after 4 yrs of abx incl. 6 mos of IV, I decided to take charge myself.
I started useing herbs and the salt/c protocol to go after these infections. Some people use this in combo with abx. Visit lymestrategies to see what other alternatives there are.
You might want to start with some antiparasitic herbs such as Parastroy or Humaworm and adding salt/c.
You don't have to just sit there feeling helpless. Also there are Buhner herbs to take for other infections. Hope this helps you
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hey tmmontgomery, I hate to see young people go through this---not knowing what�s wrong with them!
After all the doc's, blood work etc. and you still have no ans. then I would say it�s a good time to see a LLMD.
Read this site below on (enlarged/spleen & Lyme disease)
posted
I'm younger too-- I was 23 when this all started. One thing that helps me get through it is telling myself that I could have 70 years of wonderful life ahead of me....thats worth it isn't it?
Feel free to PM me anytime too :-)
Posts: 844 | From CA | Registered: Apr 2010
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I see you are in Birmingham, Ala. My sister-in-law is from Valley, Al. Her sister had Lyme and the doctors told her that Lyme wasn't in Alabama. Ha!
See a good Lyme specialist. It sounds like you have the co-infection Bartonella as well.
Because you are young, you will heal faster with treatment.
Check out Lauricin online and order a jar of the pellets. They reduced my EBV to zero over time. Start with 1 pellet at a time and ramp up slowly.
Good luck.
Posts: 1954 | From Illinois | Registered: Aug 2007
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