I think I have Lyme's.... need help though

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New Member

Date Joined Nov 2008
Total Posts : 1
   Posted 11/3/2008 4:36 PM (GMT -7)   
I have been experiencing a range of symptoms for years now and was directed toward Lyme Disease and this forum very recently. I was told that there were others who could help me look through my list of symptoms and know if it was connected or not. I am 22 years old and I began having knee pains about 8 years ago and was told it was growing pains. The pains continued through high school and during my first year of college, I got really sick with what the doctors thought was mono, but I tested negative for it multiple times. I lost a lot of weight, couldn't eat and ached everywhere. It was after this that I noticed my symptoms worsening. The pains increased in intensity and frequency, shooting from my lower back to my ankles, and radiating in my joints, as well as frequent and severe headaches. I went to various doctors who did tests, none of which came back positive. During this time was I tested for lupus, RA and MS, which didn't come back negative, but doctors continued to speculate on how that might be it. Since I live in the NW, no one suspected Lyme Disease. This summer, the pain and headaches escalated rapidly, so went to a neurologist who ordered an MRI and found a pituitary tumor. After seeing a neurosurgeon, it was concluded that the tumor was the least of my worries and that I had some other sort of autoimmune disease going on. Soon after, I was told about Lyme's and pushed for a Western Blot test to be performed, but it came back negative. So here I sit, in pain, getting worse, disheartened, not sure where to go. I am including a full list of my symptoms to see if anyone else has shared my experiences. I appreciate any advice or help.
- Severe pain (feels as though it is in the center of my legs, nerve or bones) from my lower back to my ankles. Sometimes in my upper body joints, but not nearly as bad.
- Severe headaches in one specific spot in the back of my head, not helped by medication
- Rayneud's Disease (runs in the family, but mine is much much worse than anyone else's, I can't even hold a can of soda without wanting to scream in pain)
- Eye problems (I'm not sure how long I've had this, but it was discovered about two years ago that the reason I'm not comfortable driving is that I can't see depth perception and am required to have prisms in my glasses)
- Dental problems - I've had two root canals, too many cavities to count despite being a very proactive dental patient and a very strange case where the tooth had a bacteria that was killing it from the inside out, with no possible explanation
- Mental problems - I noticed this about a year and a half ago, I felt like my mind just wouldn't compute as quickly, I lose things easily (thoughts and objects), I've noticed that I trip over my words more and more often, and that I write much better than I can speak because it feels as though there is a disconnect between my brain and my mouth, and things are fuzzy. I also have interesting mood swings, moderate depression and anxiety problems, though I am not convinced these are related.
- I get dizzy really easily, have vertigo often, and get strange tingling throughout my body, but most often in my hands and feet.
- Shingles, I seem to have a problem with this virus, I've had it four different times in 8 years, I have no idea if this is in any way connected, but am looking for an answer.
- Food sensativities - over the last six years, I have become sensative to foods that I could eat as a child. They aren't allergies since the reaction is more of a stomach cramping sensation (that lasts hours, sometimes even days) and the reactions have become more intense and with more foods (examples: chicken, turkey, pears, blueberries, peaches, broccoli)
- Pituitary Tumor - small tumor that does not seem to be causing any hormone fluctuations, but needs to be monitored and tested after I get off birth control.
Please help me!

Veteran Member

Date Joined May 2007
Total Posts : 517
   Posted 11/3/2008 9:44 PM (GMT -7)   
Hi Molly,

Welcome to the forum, sorry you have not been feeling well!! Many of the symptoms you list, are common with Lyme. The blood tests for Lyme disease are not always accurate. I would suggest seeing a Lyme literate doctor(LLMD). A Lyme knowledable doctor will take your medical history, symptoms, and possible exposure with ticks to clinicly diagnose Lyme disease. I would be sure to rule out all autoimmune diseases also. If you are in need of a Lyme literate doctor referal, I would suggest posting a "looking for LLMD" post. Good luck, I hope you feel better soon!!

I am not a doctor, this is not intended to be medical advice.

Veteran Member

Date Joined Oct 2006
Total Posts : 1458
   Posted 11/3/2008 10:42 PM (GMT -7)   
Hi Molly and Welcome to the forum. I am sorry you are suffering. I agree with what anoyed said. You can email our veteran member Ticker for recommendations of doctors in your area, or ask your local/state lyme support group. You need a good doctor that can properly test you, and also make a clinical diagnosis based on your symptoms. Lyme and the common co-infections can cause many symptoms, as they can upset all the body systems to create a complicated picture. Be your own best advocate and don't give up on finding our what is wrong and getting treatment. It can take a long time, so prepare yourself for a "long haul". Your health is worth it!!

Your symptoms have been experienced by many "lymers" here on the forum. No symptom can surprise us anymore! You are not alone. Come here any time to ask questions. Read the thread entitled "Newbies, check this out" at the top of the first page of the forum. It will get you started learning.

Best wishes to you. bablymers mom

Regular Member

Date Joined Nov 2015
Total Posts : 123
   Posted 11/6/2015 9:01 AM (GMT -7)   
Hi SickinPDX,

I know this was on 2008 which is a long time ago, but if youre still on this i was just wondering if you got diagnosed and if youre back to normal now? I have the same symptoms but my headache is extreme and recurrent. Its always there and doesnt go away with any medication. Im going down to be tested on the 17th of this month, ive been feeling like this for about 2-3 months.
Please let me know what treatment you had and if the pain went away!

Hope youre fully recovered

Forum Moderator

Date Joined May 2007
Total Posts : 36051
   Posted 11/6/2015 10:55 AM (GMT -7)   
Sorry Leora, but that member has not logged in since three days after the original post was made, and as you can see, they only had the one post.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15
*I can usually post a link to any info that I post. Wish to see a link? Please just ask!

Garden Peace
Forum Moderator

Date Joined Sep 2012
Total Posts : 4191
   Posted 11/6/2015 12:08 PM (GMT -7)   
If you will enable your email in your profile, I can send you the name of a LLMD near you. There's a support group in Portland that I can send you information on too if you'd like. The next one will have a speaker on bee venom therapy, next Sunday.
Lyme Forum moderator
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