14 months of Lyme symptoms and still no diagnosis

[Isntlifepchy]

In May of last year, I was bitten by a tick while camping and did not have a rash although it was VERY red and itchy. 6 months later, while getting routine bloodwork, I was positive for early stage Lymes. I took antibiotics for 2 months before seeing the Lymes specialist. He immediatly suspected it was a false positive because my symptoms I was expressing were consistant with late stage Lymes. He did his own bloodwork for another lab which turned out negative. January of this year, my symptoms started getting worse. More headaches, vertigo, nausea, vommiting occasionally for no reason, joint pain and tingling in the face and arms. My PCP did followup Lymes bloodwork which turned out positive once again for early Lymes. I then went back to the Lymes specialist who, again, told me that my symptoms were consistant with late stage Lymes so he was 99% sure it was a false positive again. In April of this year, my migraine started. I was sleeping constantly. I was at the ER twice and had 2 CTs. Both were negative. I went to a neurologist who prescribed a spinal tap for Lymes and other bacteria which turned out negative and an MRI to rule our a pseudo tumor which was also negative. He did give me some heavy meds for the migraine but it only dulled the pain. Eventually, after 49 days, the migraine slowly subsided. It is now July and I am still experiencing some symptoms including periodic headaches, vertigo, joint pain, and tingling in the face and feet. I have a big suspicion that this IS Lymes and that I may have been misdiagnosed. I am so ready to find out what this is. Has anyone else had this happen? What should I do??

[ree427]

Some doctors are horrible, aren't they? The important thing is you know that you are on the right track and try not to let your PCP get you down. You may want to find a new PCP.  I have been down this same road and found a new doctor. I hope your new Lyme doctor listens.

[Isntlifepchy]

So I went to my PCP to get a new referral for a 2nd opinion with a new Lyme specialist and he ended up telling me that he thinks I'm sick in the head. He says "Don't take this the wrong way but I think you have some mental disease that makes your body feel these symptoms but there is really nothing wrong with you so I want you to see a psychiatrist also." I immediately broke down, started to cry and said "There is nothing wrong with my brain!!!" I should have known that he would go that route just because all tests have shown nothing so far. 2 positive Lyme blood work results within 6 months and I'M the one who's crazy? Yea...that's his way of saying 'I have no idea whats wrong with you so I'm just gonna say your nuts and call it a day'. Awesome! I guess I won't get my hopes up about this new Lyme doctor.

[Phtartist]

And yes, the disease goes in cycles. It is called a bloom cycle, as the doctors have mentioned to me. It's a kind of birth cycle. It seems the bacteria are born every three weeks, mature, go into the red blood cells as is the case with the Babesiosis, The Mycoplasma bacteria permeate and mimic the cells of our system..organs etc. Borreliosis go into the red blood cells. In these places the bacteria live making us feel ill as in the case of Babesiosis it's cells multiply taking up more room than the red blood cell can hold, not leaving room to carry oxygen, henceforth fatigue.
This I learned from my research and discussion with several doctors to validate my understanding. I'm not a medical professional.

[Phtartist]

The odd thing is during the fifteen years I had been tested for Lyme western blot and it showed a negative result every time. I learned from a Fibromyalgia friend on here, back a few years about the Mycoplasma and had my doctor test for that, which came up positive, then I had all kinds of CT, brain scans ( which showed white spots) indicative of MS etc. But not conclusive. My point is, I had tons of tests which all came out negative but the wrong doctors reading them.
It seems the brain scan, which I showed this Lyme specialist, a member of ILADS, shows the effect of Lyme on the brain. Mycoplasma is notorious for being a confection with Babesiosis and Borrileosis and my symptoms ranging from severe chronic headaches, muscle pains, chronic low grade fever (usual body temp. 97.4) depression (psychiatric Lyme symptom, others include anxiety and bi-polar symptoms) which I suffer from greatly, all should have been a hint.
I have the belief that all my doctors were working hard to see me to health, making me comfortable but could not find the answer with their limited knowledge.
The Lyme doctor, my family doctor referred me to has a specialized lab in Palo Alto Cali. That he sends his blood tests to. I had never seen specific results printed and deciphered like these before.
The whole thing is, in the last two years,  after I had two root canals, I got even worse, to where my family doctor gave up and said she didn't know what to do for me. She cried, so sad, I was so sick. She since quit medicine.
I went to a Fibromyalgia specialist that took my money and gave me the run around. Giving me a blanket cure/treatment, when I asked for tests and real medicine, he wanted to have me learn to breath right and take snake oil. Lol. Scary thing is he is a key note speaker in a major FM org.  I am in grate health otherwise. I'm 58, have no signs of aging, yet I've been dealt this.  OK, gravity is pulling on me a bit LOL but I'm so alive but sick all these years, it's sad. My career has stopped, my husband and I haven't traveled in sooo long, right now I cannot drive due to the neurological deficit's caused by the Lyme of perception being affected and forgetting where I am.  
My disease has progressed to severe neurological problems. Visual problems, brain dysfunction, neuralgia to name a few.
When you said you have the headache WITH stiff neck, that is classic Babesiosis!  Girl, go to the ILADS International Lyme Disease and Associated Disease Society, site and look up a doctor in your area.
I am in NJ and see a doctor Streit in Howell NJ.

[ree427]

You asked if the symptoms come in waves...Yes, symptoms wax and wane in a cycle that repeats roughly every four weeks.
Your symptoms sound much like mine when I first began to have symptoms. I was also given the Fibromyalgia diagnosis. In my opinion, Fibromyalgia is a symptom of a disease, not a disease by itself. I think too many people are given this label.
It is a war to be properly treated, but at least there is treatment available with a Lyme diagnosis with the hope of getting better.

[Isntlifepchy]

The one thing I must say is that it is very uncharacteristic of me to get migraines. I had one once when I was a teenager and it lasted 24 hrs. I thought THAT was bad...jeez! Once more then a few days went by with this one, I was almost positive that it was all related to the other symptoms I was having...like nausea. occasional vomiting, severe vertigo, feeling like im going to pass out, tingling in the face, feet and hands, EXTREMELY stiff neck, insomnia and fatigue, and a general feeling of my muscles aching. To me, I think Drs made Fibromyalgia up to give these vague symptoms a name..almost everyone I know who has been diagnosed, was later diagnosed with something else in place of it just like you. So I am sorry to say but I am not surprised that it was something else the whole time. Its just something for them to tell the patient to make them content. I know thats what I would REALLY love right now is an answer...just not the wrong one. Does anyone know if the symptoms come in waves? Its been 3 weeks since my migraine subsided and for that time I was feeling (almost) back to normal. Now, it seems that the symptoms are slowly returning...some that I have never experienced before. I decided yesterday to make an appointment with my PCP because of the returning symptoms. Im guessing hes going to want me to get a 2nd opinion and maybe some follow up blood work to see if the early stage antibodies are still there. If so, I will be pretty much convinced that this is what it is and its just going to be a war to be properly treated! Sad...

[JackieCalifornia]

Greetings.  Sorry to hear about all you have gone through.  I've been dubious about 'fibromyalgia' diagnoses for a long time, and note little things like commercials for some product that say 'fibromyalgia is THOUGHT to be caused by ...' -- they know they don't know, but rather than explore infections and treat as you have, the medical profession would rather stick with the mystery diagnosis answer.

Take care, and I hope the misery is over for you soon.  Keep us posted!

[Phtartist]

I skimmed over this thread and all I can tell you is I have had migraines for 15 years, and I was diagnosed with Fibromyalgia for 15 years, treated for both only to recently be tested by a new doctor to find I have Lyme, Babesiosis and Mycoplasma instead of FM all this time!
I'm now being treated the last three months for these three tick borne diseases that have imbedded themselves in my body.  The ensuing herxing is manifesting in immeasurable headaches and other really difficult symptoms.  
Find a good doctor to test your blood at the Palo Alto labs in Cali. Get treated.

[JackieCalifornia]

Golly.  You've been through the mill already.  Y'know, I was wondering when I read your earlier post if your 'lyme doc' was an ID doc.  They drank the koolaid long long ago about Lyme; the main docs who lead the 'Lyme = sniffles' parade are high up in ... the Infectious Disease Society of America (IDSA).  It is the IDSA that publishes standards on diagnosis and treatment of various infectious diseases, which other docs then follow because after all the IDSA are experts in infectious disease, right?  These guys are the docs who first became interested in Lyme decades ago when it was first 'discovered' in Lyme CT, and they are still ruling the roost at the IDSA.  

Second in the "Lyme is no big deal" parade are the neurologists, for reasons I have yet to figure out.  I saw an ID doc and a neuro when I was first terribly ill and got the same response you did.  We're not alone in that, either.

So I have to say, I am sadly not surprised by the reactions and 'care' you got from those docs.  Try to look at it as something you went through to get where you headed, and you don't have to go back that way again.  

If you don't have copies of all the test results from the docs, I'd suggest you have them sent to you for your own records.  It might be valuable to your NEXT doc to have evidence of what is NOT wrong with you, thus saving you time, money and aggravation of having to go through ruling stuff out.

About irreversible damage from Lyme to the nerves in your feet ... I'm not sure that's the case.  Maybe it happens to some people after an extended period of time, but not necessarily, and I don't recall having read that anywhere.

So hang in there, and find yourself an LLMD -- it's the first step to getting well.  We've all been there.

[Isntlifepchy]

Yea I forgot to mention that in March, I pulled another tick off of my upper arm...no rash and it didn't even itch. I thought that maybe the case was that I did get reinfected by a second tick. Apparently, so Ive been told by the first Lyme specialist (who was an infectious disease dr), false positives are more common to see then actual legit cases of Lyme. He does believe in it because does IV treatments for Lyme in his office. I seen him a total of 2 times and I WILL NOT go back to him. The second time I went, I was very emotional because I was/still am at my breaking point. He again told me its a false positive and to go see a Neurologist because he thinks it's something completely different. In the middle of me talking to him he told me "I cant help you...goodbye." and left me balling my eyes out in the office. I did read that Lyme is not commonly found in the spinal fluid but the Neurologist wanted to get it done and test for other things while he was there. I was expecting the Lyme to be negative and it was. The neurologist also wanted to know if the migraine I was having was a result of the Lyme or if it was something called a pseudo tumor which is excess spinal fluid on the brain. The spinal tap and MRI confirmed that it wasn't. Yea 49 days was extremely hard. I was a shell of my normal self and it was effecting everyone around me. Thankfully i noticed that as the days went on, the level of intensity would go down until it disappeared. To this day, I still dont know if it was related but I have a sneaking suspicion that it was. I also have a gut feeling that this whole time, I've had the disease and I am just going through the roller coaster to actually get diagnosed. It's sad that things have to go this far and every day I have it that I dont get the proper treatment is another day its wreaking havoc in my system. Im sitting here as we speak with pins and needles in both feet! That says that its effecting my nervous system and I hear that it can cause irreversable damage if its not treated. Very frustrating but Ive come this far, so I guess im in it for the long haul! Thank you for your input. At this point, every little bit helps. :)

[JackieCalifornia]

Sorry to hear all that you are going through --

Perhaps it's possible that you were infected a while back and your immune system kept things in check until you got ... reinfected?  There's nothing to stop ticks from striking again.  I think that happened to me, tho I can't prove it.  I had little symptoms for a couple of years, like sore soles of my feet and fatigue.  Then we went back East in lots of grassy places on a trip and I got suddenly very ill with what turned out to be Lyme and a co-infection.  Piling new infection on old infection overwhelmed my immune system, and it suddenly couldn't keep all the bad bugs down.

So if you're getting positive tests, whether indicating old or new infections, then treating them would seem to be thing to do, yes?  A false positive PCR test is something I have not heard of, but I am not medically trained.

Generally speaking, neurologists are not keen on diagnosing Lyme at all, and I have read that a significant number of people with Lyme do NOT show it in their spinal fluid, yet some docs rely on that as the decider.  

In your situation, I would take copies of all the old tests to a new LLMD and try again with a fresh look.  Maybe another visit to your current Lyme doc is in order, but if he is not a believer in Lyme as a long term infection, then maybe you do need a new doc.  Is your 'Lyme doc' actually an infectious disease doctor?  Many of them don't 'believe' in Lyme either and think that a long term Lyme infection is an autoimmune reaction instead of a current infection.  That may be what your doc is doing -- dunno.

I can't imagine a 49 day migraine -- you are made of tough stuff.  You can get through this, though, and I admire your grit.  Let us know how you do, okay?  Sorry not to be of more help.