Hi, my name is Lynne and is am from massachusetts…I am new to this site and I have been reading a lot of post in the forum for the last week… I have so many questions I don’t even know where to start. I have been fighting this for almost 5 years. same ole thing no one could figure it out. I still test negative but my doctor uses quest and I can’t afford the test for a better lab…I have suspected Lyme for quite some time. Gone to many different doctors, rhuematologist, neurologist ect…had lots and lots of bloodwork (I know what I don’t have) and many many test from X-rays, mris, ct scans, nerve conduction tests ect…everything is always fine… Ugh…this past year has been my worst, I have so many symptoms I would be to long to type, major problems are brain fog, memory loss, word block, severe joint pain (knee to feet) and (elbow to hand), right hip and left shoulder into upper arm…I get numbness and tingling constantly…can not sleep from it, swollen glands constantly, sore throat, heart palpitations, tired and so on …so after my MD has run out of things and of course he been-saying it’s fibro (ugh) he finally thinks it Lyme…I started my own herbal tinctures 3 weeks ago, cats claw and Japanese knotweed, and I herxed right away…had to play around with the dosage to figure out what my body could handle. So last week my doctor started me on doxy…I take it twice a day and omg all heck broke loose…been on it for a week and had to stop the herbs for now cause I have been herxing so bad…shoulder blew up like balloon with severe pain and my arm is painful, do not have full use of left arm (weak), feel displaced and headache like I have never had before in front of head, every pain in body is exaggerated 10X…sick to my stomach ugh…so my doctor called a infectiuos disease doctor to try to get me in and the infectiuos disease doctor told my MD that he didn’t think it was Lyme so he will not see me.now back to square one.what the heck do I do now…it’s hard enough having family, friends and coworkers not believing you feel like death now this …I just want help from someone…why is this so hard…any advise would be great…and appreciated!!
Hi Lynne,
I am sorry to learn you are going through so much pain and confusion about what is wrong. I completely understand the symptoms you talk about and get through one day at a time. I recommend seeing a lyme-literate physician to rule in or out lyme. There are a few tests they can run such as CD57 to see if lyme is affecting your body. There are also labs that specialize in tick-borne diseases that you may be able to get blood counts done through. I hope you are having a good day....and you are not alone!
Lynne, why do you think it isn't fibro? Many of your symptoms sound just like Fibro to me.
I have to agree with you here Dancermom. It does sound a lot like FMS, minus all of the herbs and antibiotics anyway. It might be helpful to consider other avenues. Fibro is difficult to diagnose, but there are numerous therapies that can make you feel better.
Hi Lynn,
I have just been diagnosed w/Lyme's & Rocky Mountain Spotted Fever just yesterday 10/30/2014. I have been sick for the past 20+ years w/ fibromyalgia, CFS, Graves, Pre-Glaucoma the list goes on....what I have found out & have actual seen a huge difference in myself concerning the fibromyalgia is major food intolerances...I am being treated with allergy drops to build up the intolerances. I have found a Naturopathic NP here in Va & she has been getting to the bottom of all this. I meet w/her next week to see what treatment I will be starting for the Lyme's & RMSF. Your blood work has to be sent to a lab in California from my understanding to get the correct readings & also your doctor has to request certain bands to be tested. My hope for you is that you find the right dr/np to help you, most doctors do not have a clue what to look for.
Nonna, please take this for what it is worth if you have Rocky Mountain Spotted Fever, there is no doubt of it. before the name of the disease was changed back in the late 30's to Rocky Mountain Spotted Fever after the Rocky Mountain Labs who developed a vaccine for it. It was known as Black Measles. The symptoms are not subtle and the disease almost always fatal within a pretty short period of time if untreated. The rash is not subtle but is present 90% of the time. Iguess what I'm saying if an MD diagnosed you he needs to lose his license for gross malpractice if you are wondering how to be treated. If it was anyone else, they are a complete quack. 
Cats claw and Japanese knotweed will not cause herxing. If too much they can make you sick as a dog and cause some nasty upper body swelling and breast pain. I'd be very careful with them although their anti-inflammatory (NSAID) properties can help relieve some pain issues. Aleve which is similar is probably mre effectiveQuantitative
The most common effect of Post treatment Lyme syndrome is an autoimmune disorder. You are very fortunate that they found one they can treat. They can be pretty illusive. The pain and fatigue from Auto Immunes are crushing. But they can be treated. There is no reason to be miserable I'd go back to the Rheumatologist. Your herbal treatments will complement the treatment he lays out for your autoimmune nicley.
CD57 lymphocyte assays are worthless. in double blind tests going back as far as 2009, The "natural killer cell" counts are no different in Post treatment lyme syndrome patiens than controlsThe test has been evaluated by numerous organizations and was peer reviewed again as recently as July of this year.
When I first got sick one of my symptoms was a rash like the one in the photo above. My doctors did not suspect tickborne diseases at that time. Over a year and a half went by before I started to go blind in one eye only. At that time my retinal specialist pushed for Tickborne disease testing because only a few diseases can make one eye go bad and limes disease is one of those. For that year and a half in between initially getting sick and my diagnosis I sat on the couch. I sat on the couch so much I wore a hole in the spot where I sit. I could not function at all. I couldn’t remember how to cook. I would get up from the table to take my dishes into the kitchen and I find myself in the bathroom. My point is that I presented with the rash and nobody paid attention to it. The doctor had put me on a Z pack, Bactrim, and finally a couple weeks of doxycycline just trying to make me feel better. The rash finally went away but the symptoms continued to get worse and worse until finally I was unable to talk and walk. Losing sight in My eye my ability to speak and my ability to walk made the doctors notice and at that time I was recommended to us infectious disease specialist where a spinal tap was given and it was determined that the tickborne diseases had penetrated the blood brain barrier leaving me with encephalitis and meningitis. But I survived it.
tj1 said:
Nonna, please take this for what it is worth if you have Rocky Mountain Spotted Fever, there is no doubt of it. before the name of the disease was changed back in the late 30’s to Rocky Mountain Spotted Fever after the Rocky Mountain Labs who developed a vaccine for it. It was known as Black Measles. The symptoms are not subtle and the disease almost always fatal within a pretty short period of time if untreated. The rash is not subtle but is present 90% of the time. Iguess what I’m saying if an MD diagnosed you he needs to lose his license for gross malpractice if you are wondering how to be treated. If it was anyone else, they are a complete quack.