Trev425

$.02 = 2 cents

Def sounds like presentation for Lyme. Long time to be on antibiotics though. There is a post-lyme syndrome/condition that is poorly understood at this point. You getting better at all? Should resolve over time. My $.02.

I was Rx'd lyrica first,but could not get prior authorization from my insurance company, so it was going to be $650 if I wanted to pay for it. I tried gabapentin and it was only $15. The difference is really staggering. I think the way it works is that you try an alternative first, like gabapentin, for a certain period of time (like 2mos) and once it proves to be ineffective then the doctor will tell the insurance co to authorize the lyrica.

It's so different for everyone so you won't really know until you try. I tried 900 mgs of gabapentin for suspected neuropathy. It didn't really do anything for me so I stopped. I don't regret giving it a shot. I figured it was worth the potential upside with minimal potential for downside based on all the experiences I have read about.

I haven't been diagnosed with EDS, but I did bring it up previously as I have some hypermobility symptoms. He seemed dismissive. Now that I am more educated through forums such as this one, I am going to revisit it in a couple of weeks when I see him next. He helped commission a study on the condition, so I am interested in his perspective. gofl1 - glad you are making progress let us know how it goes for you.

I think it's worth talking to your Dr. about. It stands to reason that a vasodilator could be causing the flushing.

Perhaps I should have mentioned that I don't have POTS, but the blood pooling/autonomic issues seem to overlap with the POTS folks on here. During much of my twenties I had chronic anxiety and my heart would constantly beat fast and I had a host of anxiety related issues (IBS, depression, insomnia, etc). However, as tough as it was I was highly functioning and those issues resolved over time. I could write a whole story just on this battle. I am wondering if my nervous system was just doomed to fail from the start :/ I had many blood tests, but all tested negative. All of the major viruses, bacteria infections, STDs, autoimmune issues, etc. In fact, I still have not gotten EBV and I am about to turn 31. I know for certain I caught a virus because a few people I know all had the same mono-type of illness. They recovered in a couple weeks. I nearly recovered over the same period of time but then one day I woke up feeling like I got hit by a car and that's when my issues really kicked into high gear. A couple Docs suggested CFS. The autonomic issues led me to my neurologist who said it was a "super-infection". This is when multiple strands of the same virus throw the immune system into disarray. He said 1 - 2 years for a full recovery. I never heard of such a thing, but this guy definitely knows his stuff so I just accepted it. I also have flushing in my nose and ears, which can be embarrassing. Also my chest. No real pain there tho. My hands get very red, but do not hurt. I think the only reason the feet really hurt is because I walk on them when they are engorged in blood. Elevating helps, and I prefer to cool with a fan than with water. Overall everything is just so temperature sensitive on the hot AND cold side since this all started. It's easy to get really scared about all of these conditions. I think it's important to listen to the doctors and to try not to get into too many hypothetical thought patterns. Everyone's case is different so speculating on prognosis can be dangerous. I admit tho that sometimes it's hard not to let your mind wander. TCP - did your ME/CFS improve over time? Did the autonomic issues subside with this? Sounds like you are struggling with some neuropathy. I am glad you are finding some relief. Barb - what were the symptoms of your virus? Was it particularly nasty? Some of my symptoms were really strange.

Thanks for the responses. I find just talking on these forums to be cathartic. From what I have gathered, true erythromelalgia seems to have a sensory component. I am also not in the excruciating pain that folks describe. I think if I didn't have venous pooling then I wouldn't have the problem at all, so I am wondering if there's a difference between the sensory condition or just general autonomic dysfunction. The treatment really seems to be tied to the underlying cause. If it's some neuropathy then you treat the nerves (gabapentin, etc). If it's autoimmune then you address the inflammation. The neuro says he's seen post viral dysautonomia of this nature resolve over a period of months to years so I am staying optimistic. I do think I have hypermobility type issues however, so I am starting to wonder if this had made me more susceptible to all of this. It is definitely scary. Mine seems to be systemic too (some degree head to toe). I think I would be in a better place mentally if I never had searched the internet for the condition and seen the horror stories. I had CFS type issues when this all started, but fortunately I am about 85% recovered since 9 months ago when this all started.

Hi All, I noticed the poll on blood pooling, and I have a related follow-up question. Does anybody else got hot flushing due to the pooling? If I walk or exercise my feet get really hot and red and it's not pleasant. It's worse in the evenings. Just wondering if everybody with pooling gets this. One Dr. said erythromelalgia, but my neuro says it's just related to a virus which caused autonomic issues. Thanks! -T

I don't have POTS, but I did have a cortisol test. My understanding is there are different tests. Mine was a blood test and I had to take it first thing in the morning - the second the lab opened at 7AM I was there!

Lyme diagnosis can be fairly controversial. I went through the Lyme gauntlet myself so I speak from experience. I also personally know two people who have/had Lyme and have talked in detail about their experiences. A few things worth considering is whether or not you had a bulls-eye type rash at the site of the tick bite. If so then this is a strong indicator of infection and you should have treatment regardless of test results. Other typical symptoms are a flu like illness and joint pain; although symptoms can present differently in different people. It is also worth considering the time between tick bite and onset of symptoms. Symptoms usually manifest pretty shortly following the bite. Lyme in many ways is a clinical diagnosis so symptoms are important. Regarding the testing it can take several weeks to show a positive result under the ELISA. There is a portion of both the general population and the medical community that feel that the ELISA is a relatively worthless test and returns too many false negatives and this is where the controversy comes into play. Based on my research and conversing with multiple specialists, the empirical evidence is pretty weak to support this statement and the ELISA will generally reveal a positive result as long as sufficient time (generally a few weeks) has passed since the infection. Yes, I am sure there is small portion of the population which will receive a false negative result, but it would seem to be a much smaller number than what you might be led to believe if you are searching on the Lyme board (not trying to start a debate, this is just my opinion). If you are still concerned about Lyme then you might want to take the ELISA again but also INSIST on the Western Blot test as well, which is a more sensitive test. You may also insist they test for co-infections and that they run the test through IGENEX is California (just FYI insurance may not cover this lab, but it is regarded as the best lab for Lyme testing especially with testing for co-infections). One important thing to note though is that the results of the Western Blot may not be so clear. There could be a clear cut positive case where everything lights up like a Christmas tree or a result that it is clearly negative, but it could very well be equivocal and then you're back to clinical symptoms to aid in the diagnosis. If you get to this point and feel strongly you have Lyme then you could just try a 30 day course of Doxy and see if you react or see marked improvement. It's not completely riskless but the risk/reward benefit would be there if you strongly suspect Lyme. Happy to answer any questions about the process or my experience if you decide to pursue it further

Yeah - I know the feeling. Sometimes it's more of a "flush" feeling. Other times it's like a "microspasm" feeling. Doesn't hurt, just uncomfortable.

Since my issue started I have it in my left ear. Pretty much only at night and it's definitely in my left ear only. The way it sounds reminds me of the sound a modem used to make when using a dial up connection if that makes sense. I sleep with a TV on because I can hear the TV over the ringing. I also hear it less if I sleep on my right side as pressing my ear against the pillow makes it much worse. So strange.