This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, Joint Pain issues, Living with Lyme Disease, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments.
I am a 30 year old female, relatively healthy I guess. Lots of complaints though. I have had 2 c-sections, one being 15 months ago. I have smoked on and off for most of my adult life as well but have recently quit. I am 5'6" and weigh about 160.
I have been having a host of problems for a very long time. The history is too long to go in-depth with so I will just list the symptoms that I am having now, starting with the most recent.
- tightness on top of head (like head is in a vice)
- headache almost all the time - all over my head, shooting pains randomly throughout the day that last about 5-10 sec
- jaw/cheek pain (top and bottom)
- burning feeling in chest (like it gets hot, under rib cage)
- pain in my rib cage
- tingling/pressure near temples on both sides but not at the same time
- ear pain
- eye pain/burning (normal eye exam)
- heart palpitations
- chest pain, left and right side
- tightness/pain under left rib cage and sternun (4 months now)
- leg pain
- severe joint pain (ankles, knees, elbows, jaw, shoulders)
- tendon pain (mostly achilles)
- swollen/painful lymph nodes in neck (could be in other areas as well)
- numbness/tingling/burning in feet, arms and legs
- muscle pain
- heaviness in legs (gets worse when it rains)
- Vitamin D deficiency
- Benign Fasiculation Syndrome (so they say)
I have had tons and tons of tests...
- Upper GI/Barium X-ray
- Endoscopy of Upper GI
- HIDA scan
- Thyroid ultrasound
- Chest CT with contrast
- MRI (last week) with contrast (normal...no MS)
and every blood test you can think of to test for heart problems, lymphocytes, monocytes, CK, standard tests run when you come in to the ER with chest pain.
I have seen an Endocrinologist, Rheumatologist, Neurologist and been to the ER numerous times. Years ago, I saw a neurosurgeon and was told that I had bone spurs on my cervical spine. I see the chiropractor religiously every week for at least 3 years.
For the most part, my symptoms have come and gone for years. About 8. Just recently, they have not and not let us. It's been like this for about 5 months. I saw the rheumatologist 2 weeks ago and she did a bunch of blood work....checking for lupus and Rhematoid arthritis and Lyme. My grandmother had Lupus and RA...so they are thinking RA. My RF was slightly positive last time I had blood work. They are really being difficult about getting me my results.
The neurologist seems to think that it could be lyme, even though all the tests have been negative. The negative MRI means no MS so she really is considering Lyme but is waiting to see what the results of the rheumatoid panel say. I don't remember ever having a tick bite but I did have a strange rash about 10 years ago. The Drs didn't know what it was and I saw a dermatologist too. I remember it being oval shaped with clear center but not the traditional bulls eye. I actually had 2 of them. I live in and grew up in NE PA and we have tons of problems with ticks.
Does this sound like Lyme? If so, could it hurt to try start oral antibiotics after the Western Blot test being processed? My neuro seemed like she would be willing to start treatment without a positive results.
Any thoughts? (Thank you so much for reading if you made it this far!!!!)
in my opinion -I have no medical qualifications - but if I were you I personally would try antibiotics. Many people don't remember a tick bite and have never seen a bullseye rash - and have only had negative tests for lyme and/or co-infections - but are taking antibiotics for the treatment of 'lyme disease'.
I would recommend you get an appointment with a 'lyme literate doctor - [LLMD]- lyme is often diagnosed by clinical symptoms alone - but you need an LLMD - someone who knows the whole picture of lyme disease - and knows the best ways to treat it .
I have just about all of the same symptoms as you, my "problem" includes severe neurological problems also. My EKG was normal, blood work for thyroid was with in normal range, ANA and RF negitive, and MRI showed no lesions also. I had a 24hr Lyme test after begging my neurologist for it. They processed the test in Pheonix and it was negitive. I know the test for lyme is very sensitive and not many labs get a true result. There is a lot of false negitives and a many false positives. The name or the lab is IGeneX in Palo Alto California. They specialize on the lyme test.
I have had these symptoms for 2 and a half months, and already have serious memory loss and hardly any concentration, and mood swings. Lyme can affect any system in your body and mimic over 300 different diseases. The key for diagnosing this is finding a doctor who is knowledgable. A lot of doctors dont think chronic lyme exists or that you have to have a rash or find the tick to have it. The truth is that your immune system can fight it to the point that it just lays dormint untill you get stressed or your immune system takes a dive and it attacks all over again. They have found that 20% percent of Americans have at one point had or current have lyme. Most people can fight it off before you ever have symptoms. If you have a co-infection it is harder to diagnose and harder to test for. Also harder to get rid of.
Good luck and follow your gut. Even tho it's hard dont quit fighting for a diagnoses. And dont fall for fibromyalgia as a dx. I have the name of the best Lyme disease doctor in the nation if you are having trouble getting answers.
Let me know if you have any questions or need to talk.
Thank you so much for the responses. I appreciate you taking the time to listen to my story. :)
I got the tests back from the Rheumatologist and they were all negative EXCEPT for the Rf factor. It was positive at 31. What that means, I have no idea. It's not a high positive I know that. She does not think that what I have is definitely RA. She gave me a script for an xray or my hand and foot to help diagnose RA. The anti-inflammatory meds are not working at all...the only thing that helps is Tramadol.
My neurologist has email so I sent her one and asked if she would consider a trial of antibiotics and run the IGeneX test. I have not received a response yet. I am hoping that she will consider it, as she was the one who told me that a lot of times, Lyme tests are negative, even though you do have the disease. I also told her about my odd rash 10 years ago and she agreed that it could have been a tick bite.
I am in the process of looking for an LLMD in my area. I live in NE Pennsylvania and I am close to Philly so I should be able to find one. I just have to hunt one down. :)
Thanks again for listening. I really appreciate it. The past 8 years have been really rough and I am hopeful that I am close to getting an answer. My husband is trying to be supportive but after all these years, I think he is losing patience.
Oh and I have gotten the Fibro dx twice. Once from the rheumatologist and once from the chinese acupuncturist. I told both that I was not a believer. :) Something has to be causing all of this...I am sure of it.
Thanks again! I hope that you are both feeling well!
It is also not impossible that you have both RA and Lyme, something I'm sure you've already considered.
One comment: Often, steroids will be used to control RA. However, they are immuno-suppressants. So steroids are very bad for people with Lyme or other infections. So while you are sorting things out, be careful about using steroids. If you do have Lyme, steroids will make it much worse. NSAIDs may be a better way to control your arthritis symptoms for now.
I'm not a medical doctor, just trying to warn you about this. Many Lyme patients who are given steroids before their diagnosis. Dr. Joseph Burrascano (a well-known LLMD) has coined the expression, ' Steroid Disasters, ' to describe patients treated with steroids who then experienced a pronounced worsening of symptoms.
You can read more about it here:
Be sure to keep it in mind in case your doctors want to give you steroids for the RA. I was given a course of Prednisone before my diagnosis. I felt much much better for about a week (likely because of the relief from inflammation), then became much more sick than I had ever been.
Thank you so much for the tip! The rheumatologist mentioned steriods the other day when I told her that the NSAIDS are not working. She didn't call them in yet but did say something about trying them if I don't start to feel better.
I will make sure I stay away from them. Thank you for the tip! I am sorry that you had to go through that pain before your diagnosis. That is terrible.
I understand that I could have both so I am now just waiting to hear from the neuro to see if she's up for a trial of antibiotics. My gut tells me this is what it is...so I am going to stick to it and see where I can get!
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