Newbie Here With Ttt, Vvs And Lyme Questions

[srb]

Hello everyone,

It's a new year and one of many new things I've decided to do is to actually participate in a forum such as this (instead of just 'lurking'!) I am so grateful for all that I've learned just from reading and using the search box. I was recently diagnosed with general dysautonomia issues. I wasn't even sure if it was a formal dx at first because of how casual the cardiologist was about it, but I wasn't surprised either because it was one of the primary conditions I suspected from my own research. I'm a librarian... can't help myself :-) I was told that this is "the million dollar diagnosis" and I completely understand why after my own experience with the doctor/testing merry-go-round.

Neither the cardiologist nor my GP (who is an NP) want me to try any medications at this point. Increasing fluids, salt and restarting exercise are my orders for now. They also don't want me to do the tilt test, because they say the results are not reproducible and that their treatment regimen would not change regardless of the results. Wondering if any of you heard this at initial dx?

The initial event that directly preceded my health decline was an episode of what I've been told was either vasovagal syncope or a physical response due to improperly administered lidocaine injection. I completely lost consciousness - in the middle of chatting with the GP - immediately after the local anesthetic was injected. Upon waking, I was disoriented and had slurred/slow speech and extreme fatigue. These symptoms lasted for days. At the ER, I was given saline after twice failing what I've come to learn is called the poor man's ttt. I had never had a problem with anesthetics in the past and I definitely do not have any needle phobias. Just wondering if anyone knows of any connection this could have to dysautonomia or whether this could be a trigger event?

The lidocaine was being given for a punch biopsy to remove a non-healing area where I had received a tick bite. I have tested negative for Lyme twice on the ELISA, but I'm still considering pursuing further Lyme testing as another possible cause of my dysautonomia.

Thanks for listening and for all the support I have found here!

[gjensen]

Welcome.

I think the way your symptoms started is interesting. Nothing like it before?

You can get tested for other infections carried by ticks also.

[corina]

Hi srb, welcome to the forum! Hope you will find the answers you need here, there are so many knowledgeable people around!

[Chaos]

Hi and Welcome.

Sounds like an interesting path you've traveled to find us. Sorry you've had a cause to be here. As far as not having an "official" TTT, while some docs feel they are the "gold standard", I've certainly read other opinions where they feel that the poorman's TTT is actually more reliable and relevant to real life and that the TTT produces too many false positives. Sounds like your providers feel that you've "proven" yourself enough and you don't need the "joy" of a TTT. That's not a bad thing. They're not fun. Since dysautonomia is considered to be a symptom rather than a disease itself, the more interesting thing is going to be figuring out what is causing the dysautonomia.

Have you looked in Ehler's Danlos at all? I know a lot of them have issues with non-healing or slow healing wounds. It can also cause issues with not dealing well with lidocaine (and other 'caine' meds), although usually it's more that it doesn't work well rather than it causing you to pass out. That might be more related to the dysautonomia? Just guessing here.

Your symptoms which lasted for days after the ER, sound similar to my experiences after my TTTs and other episodes where I've had profound hypotensive episodes. Still don't quite understand why the symptoms last for so long and are so severe. Almost wonder if there isn't some hypoxia to the brain that occurs when, in my case for example, my BP was in the 30/20 range (or it disappeared completely) for some time. Maybe the extreme fatigue etc afterwards is the body's way of trying to protect itself as it attempts to repair the damage? Total hypothesis on my part here, based on what I've read and trying to integrate it with what I've experienced in my own body.

Glad you've decided to join in and become an active member of the forum.

[Trev425]

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

[Aeris5000]

Sorry you'e been dealing with this, srb! I went through the same process as you. I started with a neurologist first, because my worst symptom was daily, persistent headaches. Anxiety/panic rushes was my second worst symptom, and usually stemmed from the headaches. My road to diagnosis was long, about nine months.

My EP doc said he found it almost impossible to get a TTT approved for hospital employees with company insurance, which I happen to be. So he went the non-pharmacologic route with me, too, as he does not like to medicate unless it's really necessary. My neuro doc was way more persistent and found the proper ICD-9 code to use and got the TTT approved, so I went ahead and did it. Even though it wasn't really necessary, it did seal the dx, and my neuro had a bunch of different medications for me to try. He wouldn't have given me anything without the official dx, at least that's how it seemed.

Srb, if you do want a TTT, you might want to try a neurologist. As much as I love both my EP and neurologist, my neuro has put in 3x more effort into helping me. Not that the EP doesn't care, but when he sees normal echos, normal EKGs, normal stress, etc., without any structural problems in my heart, there isn't much to go on. But with the neuro, I had a migraine spot on my MRI, and a just barely abnormal sweat test and punch biopsy. So he had a lot more to work with and treat.

On the flip-side, as I favor my neurologist for getting the diagnosis, I prefer my EP cardiologist's treatment measures. I saw my EP yesterday and while he thought it was a good thing my neuro put me on a small-dose BB, he wondered why he went with atenolol, considering I'm trying to get pregnant. I tried mestinon for a short time last summer on my neuro's advice, but the dose was too high and made me feel awful. But I like having input from both specialties, though things can get a little confusing.

[MomtoGiuliana]

Welcome to the forum.

I have not heard of POTS being triggered in the way you describe, however, for most of us there do seem to be triggers, and quite a variety of them.

As far as TTT, I have definitely heard of people being diagnosed without a TTT. It may not provide additional information for your doctor in your case. I agree with Chaos that it may not be a bad thing to not have to endure one! My sister was diagnosed is the same way you were -- never had a TTT.

I hope the recommended treatments help you to feel better soon.

[srb]

Wow, thank you so much for the warm welcome - and all the wonderful suggestions and experiences shared. This is so very helpful.

Welcome.

I think the way your symptoms started is interesting. Nothing like it before?

You can get tested for other infections carried by ticks also.

I have tried to think back before the "start" also since several medical folks have asked the same question. At first I said no, but there are a few things like headaches, eating difficulties (including unwanted weight loss) and very cold extremities that I did have before the lidocaine episode.

Yes, think I am going to have the full battery of tests done for tick-born infections just to be sure - for peace of mind mostly!

[srb]

Chaos & MomtoGuiliana - thank you for the really helpful info about being diagnosed without the TTT! I feel a lot better about skipping it for now.

Chaos - thanks also for pointing out that connection to Ehlers-Danlos. I had looked at that briefly in my own research but never caught the slow healing connection. I don't seem to have any family history for ED and so I sort of discounted it. The punch biopsy site has also been very slow to heal. What you described for post-hypotensive episodes was very similar and it's nice to know that this is a common reaction of the body to such an experience.

Trev425 - so much great info on the Lyme controversy, thank you for taking the time to relate your knowledge! I've done some pretty extensive reading on it, too, and have found it quite confusing to say the least. I think I am going to go ahead and have the IGENEX tests done for my own peace of mind. I was given a short course of antibiotics a couple weeks after the bite and I am a little fearful that this may have interfered with the ELISA tests. Thank you for offering your time for future questions - I might have some :-)

Aeris5000 - that was a really helpful perspective on cardiologists vs. neurologists, thanks! My cardiologist suggested seeing a neurologist to rule out seizures but not really for the dysautonomia stuff. I haven't pursued this yet. Will try the non-pharmaceutical regimen for a while first I think and then see how I'm doing. It is so interesting to me that Mestinon is a drug used for this class of disorders because my sister, who has Myasthenia Gravis, relies on that drug.

[Chaos]

Besides EDS, Marfan's syndrome is a similar condition that you might check out. There are many hereditary connective tissue disorders which might account for the slow healing.

Funny that you have "Irish Twins". My mother-in-law had 3 sets of "Irish twins" amongst her 10 kids. That will keep you busy.

[srb]

Hi again Chaos,

How were you diagnosed with EDS? And is it clearly in your family? My sister has Myasthenia Gravis, but I've been told that isn't a real factor.

Yes, I have a 2 and 3 year old ten months apart... In other words, life is crazy! Developing these health issues while parenting them and also finalizing their adoption has been a bit challenging. Hence your username... Chaos, lol

[Chaos]

I've always had people comment on my ability to do freaky things with my body, so I've always known I was hypermobile. I have only realized in the last couple years that my sisters (who are significantly older than I am) also have hypermobility issues, but no, EDS wasn't obvious in my family. When I had multiple complicated pregnancies and premature deliveries, I did some research and came up with EDS as a possible cause- 20 years ago. My docs back then totally dismissed it as a possibility.

There are various types of EDS though and not all of them have hypermobility as an identifying issue. My daughter has been diagnosed with joint hypermobility/connective tissue disorder, although to look at her you would never think of her as a flexible person. Yet her joints themselves are unstable and her tissue definitely heals abnormally when she scars.

Not trying to force the issue that you have a connective tissue disorder. That may not be "it" at all, just trying to give you avenues to explore, as the slow healing and lidocaine issue have come up in my dealings with people who have EDS. It also has come up in someone I know who has mitochondrial disease/dysfunction. But then. the geneticist who diagnosed her mito was also theorizing that maybe EDS 3 might be mitochondrial disease and that's why they can't find a genetic marker for it.......but that's another conversation.

Yes, "Chaos" came from having 4 kids in 6 years, working 4 jobs (physical therapist, certified childbirth educator, taught sign language at the university, taught yoga), yet still considered myself a "stay at home mom" ( only worked evenings and weekends) so I volunteered in all the kids' classes at school etc. Pretty much never sat down and slept very little. Loved my life. That was before I got sick. Once I became sick Chaos still seemed appropriate but just applied to my body rather than my lifestyle.

[srb]

Thanks again, Chaos. There are so many similarities across the autonomic dysfunction and autoimmune spectrum of disorders. It is heartening and at the same time overwhelming to learn about the specific syndromes and see so many similar symptoms to what one is experiencing. I have an open mind to do my best to follow what my medical providers have thus far recommended while also still being my own advocate and seeking for the underlying cause of my dysautonomia difficulties.

[JuneFlower]

srb- Sorry to hear about your troubles. There seem to be two competing theories on Lyme. There is an Infectious Disease specialist at the hospital I work in. He does not trust the Ingenex Lab. He says that "everyone comes back positive" from them. He doesn't believe in chronic Lyme. Not sure what to think as I know of people who seem to suffer for years after an exposure. Longterm antibiotics (a year) help.

Also many other diseases come from ticks and they just discovered another one. (Babeosis, erlichosis). Worth some good tests.

As for the fainting, i could see that lidocaine being a trigger for some people. It s great to know your triggers to help keep safe. But just the fact that you passed out should be addressed. Maybe another set of orthostatics at a cardiologist office? I don't see how a tilt table test is much different really…but my daughter hasn't had one. Maybe its time for a medicine if you are this symptomatic. Good luck.

June

[srb]

Hi JuneFlower, thanks for weighing in on my particular mystery situation! I don't know what to believe in regard to the Lyme issue. My appointment for the Igenex blood draws is this coming Monday. My primary provider is connected with a hospital system that has an infectious disease specialist group, and the cardiologist said she "did not disagree" with my seeing them but I am reluctant to pursue that since I know they will not want to do much considering my two negative ELISA Lyme tests.

I have looked into EDS more due to other members' suggestions and I do feel that I fit the profile for it in some ways. I am stumped as to how pursue testing for this.

In general, I am struggling a bit more than I had been recently. I have been sick with some chronic cough/asthma/sinus thing for two weeks now and it has thrown me off the good habits I was trying to cultivate to lessen the autonomic problems. Still very thankful for this forum to turn to for info and encouragement.

[Bigskyfam]

How has exercise/ fluids and such been working for you? I had a ttt in nov and was dx with pots. No subtype. My docs are really stressing meds. I like that your docs are saying wait. I filled my scripts but haven't started yet. Wanted to see how lifestyle changes would work. So far, my initial symptoms have calmed down and I get flurries of more specific symptoms. I'm journalling it all to present to my doc, mayo or just to reflect. Welcome. A late one

[JuneFlower]

srb- Thanks for replying. I did the igenex testing for lyme. My results were borderline or what they call equivocal. They are hard to interpret. They test multiple bands. Some of mine were positive and some were negative. But my elisa and western blot were negative. Its so hard being a patient! I definitely think a dr would be able to tell you if you have EDS. Not sure which kind of dr teats that. That hasn't come up yet for us. We'll see. I hope you feel better!

June

[Christy_D]

My daughter was diagnosed with EDS a little over a week ago. Her internist sent her to a Geneticist who is knowledgeable about it. My daughter is the first in the family to be diagnosed because she is the first one to have 'issues' from it. The doctor said it doesn't skip generations, so I probably have it but have never had the issues she has with it. My mother, sister, nephew, and niece are all hyper mobile, but no pain or fainting, so we just always thought they could do weird tricks.

My daughter is slow to heal, she had a skin biopsy that left a scar and the doctor said her skin is very soft. The skin biopsy revealed small fiber neuropathy and her neurologist also diagnosed her with orthostatic intolerance since she can faint when going from sitting to standing. She has other issues as well(migraines, unexplained weight loss, inability to put weight on, tingly/numbness/cold hands and feet). The geneticist said she probably has POTS but it didn't show up on the TTT the day she had it done.

So, a geneticist is a good place to get an EDS diagnosis.

Christy

[JuneFlower]

Christy- wow my daughter has most of those symptoms. But I never thought of her as having hyper mobile joints. Hmmm. Thanks for sharing.

June

[Christy_D]

June,

I didn't know she was hyper mobile until she was doing physical therapy for joint pain. The therapist told her she was hyper mobile. She has problems with her ribs popping out and causing her pain as well. She is now also beginning to lose the arch in her feet. If it weren't for my son being so severe with his POTS, I don't think we would have put all the pieces of the puzzle together regarding all the family issues.

Christy

[JuneFlower]

Christy- Thanks for commenting. I am starting to think we should rule it out. My daughter just told me her rib hurts….Weird. It's really endless.

June

[corina]

Christy, I'm wondering, my doctor told me that although the hypermobile type of EDS is linked with POTS he hasn't heard of others types being linked to it. You mentioned the soft skin and slow healing which I'm known to have. Do you know whether this type of EDS is considered to be linked with POTS too?

[Christy_D]

Corina,

The geneticist told us my daughter has EDS-Hypermobiltiy type, which includes soft skin and slow healing. I think the symptoms over lap, especially from the Classic type to hypermobility type. Whether POTS is a symptom of all types of EDS, I'm not sure. She explained that while the collagen was weak, the blood vessels are also floppy causing the POTS. There is a very good book on Amazon about EDS-Hypermobility type by Dr Tinkle that I read that is very good. It goes over all the issues and symptoms and covers POTS as an issue. It was an easy read, so if anyone thinks they may have EDS-hypermobility type I recommend reading it. The geneticist recommended it to me, and was surprised when I told her I already read it.

Christy

[corina]

Thanks a lot Christy, I will def look into buying this book!

[srb]

Bigskyfam - well, I never got the exercise restarted... yet! I got so busy with the beginning of the semester at my work and then I got sick. The other things I was doing did seem to be helping. So I was just starting to feel like really going after regular exercise again. I feel like I have to keep climbing out of a hole and starting over. Right before I had my initial incident, I had been really trying to exercise, including training for a long fitness hike, as well as gain weight. Then I lost the little bit of weight I had gained and was in and out of bed. Now I feel like I'm back at the starting block again!