Hey everyone i've had many different symptoms that have come and gone over the last 4 weeks, and it's very strange because my fiance said have you thought of Lyme disease, and i read a list of Lyme disease symtoms and there are about 40 symptoms and i have had many of them, anyone with any Lyme info what do you think, i've had chest tightness, coughing, sore joints, sore back, numbness in extremities, blurry vision, sore testicle and lower abdomen, fluttering in my chest, dizziness, shortness of breath, tingley mildly painful teeth and jaw, and a few other things and the thing is the symptoms change from day to day, which is something Lyme does, any info would be great. Thanks everyone
It certainly sounds like you could have lyme disease. Just last night I happened to catch part of the episode "Mystery Diagnosis" and they featured a man who made numerous visits to the ER with chest pain, numbness, headaches and other symptoms. The physicians' there told him that it was anxiety and one time they even sent in a psychiatrist to have him elevated !!!! He kept telling his physicians' that they would finally diagnose him after he's dead. Anyway, a friend had given him a name of a good physician and this physician immediately did testing and found out that he had encephalitis (also common in CFS patients') and diagnosed him with lyme disease. Although this man had been tested a couple of times for lyme disease, his results were negative. The physician was interviewed and she said that many times the patient's immune system is so compromised from the lyme disease, that the patient is producting antibiotics and therefore, the test result will be negative.
If you want to investigate the possibility of Lyme Disease, you can start with information at the Canadian Lyme Foundation.
Because the lab tests are not very accurate, the diagnosis is based on the patient's symptoms, which is called a "clinical diagnosis."
Many doctors have told their patients that they do not have Lyme, based on a negative lab test.
The flash discussion group at LymeNet.org is very helpful to newbies who need more information about diagnosis, finding a doctor who is familiar with Lyme, and various treatments.
Of course, you may have other medical problems in addition to tick borne infection, but these diseases can cause so many problems with so many body symptoms.
I assume that you had the ELISA test done for Lyme, this western blot, can it be done through a regular lab? My neuro wants to retest me for Lyme, was tested last spring, with the ELISA, maybe I should ask about the WB. Thanks
Let me know how your spinal goes. My neuro wants to send me for one, but I kinda chickened out, scared. She is sending me for another brain MRI, I only ever had one, last spring, it was normal. I have weird bug crawling sensations, that are made worse by clothing, but go away when I take a shower or bath, and I don't notice them when I am sleeping. My face is really bothering me today. I am in the process of scheduling an appt at a LLMD. Its been to long, 6 years, and its driving me nuts. I really have no other symptom of Lyme, just these weird feelings going on. Hope everything goes well with your spinal tap, I had an epidural with my son, alot of people say that its about the same thing, I dunno. It didn't hurt then, but I think I was enough pain then that I didn't pay much attention to it. Good luck, I'll be thinking about you. Jennifer
Anyone ever heard of a spinal tap to check for lyme?? I am having one on friday. I had 2 positive lyme tests but equalivalant western blots. I was treated with 30 days of doxyicycline and after i came off them started having muscle trouble. Every dr. says not lyme but new neuro is checking spinal fluid.
According to that physician last night on Mystery Diagnosis, there is no real test for lyme disease. The Western Blot can pick up the antibodies, but only if your immune system is making antibodies and only if the sameple of blood they take, has those antibodies in it.
The spinal tap will be to rule out encephalitis (inflammation of the brain). Encephalitis is also common in patients' with CFS. Perhaps this explains why CFS and lyme patients' experience many of the same symptoms ? The man on Mystery Diagnosis who was eventually diagnosed with lyme disease, also had a spinal tap done and his results were positive for encephalitis.
I strongly suggest talking to your physician about the Marshall Protocol. Dr. Marshall came up with the protocol after he was diagnosed with sarcoidosis. The great thing about the MP is that it treats lyme disease, sarcoidoisis, CFS, Fibromyalgia, etc. As you know, people with lyme disease are open to other conditions --- the same goes with patients' who have fibro & CFS. We have pathogens in our tissues and cells that are causing our symptoms and as you know, bacteria multiplies like crazy. Although the MP is still considered a research protocol (they've been gathering the necessary info for the FDA), the medications they use are NOT research medications. There are some patients' on the protocol with lyme disease who turned to the MP after the IV treatments didn't treat all of their symptoms.
No IV treatment ! Dr. Marshall discovered that an ACE inhibitor helps with inflammation and the die off reaction that you get from taking the antibiotics.
I'm on the protocol myself and making progress. I can tell you though that your symptoms get a little worse while on the protocol, which is normal because it is a die-off reaction. You are killing the pathogens which are making you so ill.
There is a lot of info out there, including an interview with Dr. Gary Deed on the MP. In my opinion, it is definitely worth checking out --- and especially since you may have both lyme and sarcoidosis. Dr. Marshall treated his own sarcoidoisis with his protocol.
The Doctor just said he was going to check my spinal fluid for lyme. I have been diagnosis with Sarcoid too. So I dont know if it is sarciod affecting my muscles or lyme. Lyme was 1.42 first time and 1.21 the second. Anything 1.20 and below is negative. I am seeing a reumitoligist too. Thanks for the wish of luck, i will let u all know!!
I was reading one of you comments from sometime ago. The one where you listed your symptoms and stated all the doctors you had been too. I have been trying to see a place where you posted. I hope you read this. I have the same symptoms as you. It has been going on for 2 years and it is getting worse. I have been to the mayo clinic, 3 neuro, a reumat., blood specialist, food allergist. everywhere. I feel like I get the flu over and over again. My legs and arms are so heavy. I have a rash that breaks out at the same time I am sick. Somedays, not many now, I am fine. I also have twitching at times. I am so tired of test and not finding out anything. I have had to quit teaching school after 14 years. I just ache all over..just like you feel with the flu. They are currently testing me for celiac disease. Please write back..you are the only one I have seen with similiar almost identical symptoms. my email is ***@**** don't care who sees my address if it is a road to finding out what is wrong..thank you
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