New Guy Here - Seeking Advice/help

[jcadwell9]

Hey all,

I apologize for the long winded story in advance. I just joined this forum because I think I may have POTS. I'm still in the early learning stages of this so I'm looking for thoughts and advice from you guys. Here's my story:

I'm a 27 year old male who lives in Virginia. This all started around 5 or 6 years ago when I started having issues with frequent bowel movements and diarrhea. I went to a gastro and had many tests done, only for the doctor to tell me that everything looked good and all he could tell me was that I had IBS and I needed to watch what I ate. I altered my diet somewhat but the issues still persisted.

Then 3 years ago I randomly got shingles which is really weird for someone my age. The doctors said it was due to stress even though my job and life was pretty stress free.

Then a year and a half ago the wheels came off and I started having serious problems with my brain and energy levels (all of my symptoms are listed below).

Here are my main symptoms, I've listed the most bothersome at the top and least bothersome at the bottom:

- Fatigue. I just don't have the energy to do things anymore.

- Brain fog issues. I'm not sure what to call this. It's like a mixture of faintness, dizziness and vertigo, and an inability to concentrate and think clearly, along with my head feeling like it is completely inflamed. This brain fog issue is made much worse by stimulating and stressful environments. Things like driving at high speeds, going into grocery stores (this one is terrible), going to weddings or church, high stress meetings at work, or meeting new people for the first time, even video games, can all make my symptoms 10X worse than when I'm relaxing at home. Eating certain foods also makes this worse, ESPECIALLY sugar which gives me really bad brain fog for at least a day or two after.

- Frequent bowel movements and diarrhea. I've gotten the diarrhea under much better control since I have changed my diet (no gluten, dairy, or sugar), but I still have frequent bowel movements that are really loose and inconsistent and occasional diarrhea.

- Pain in my thigh muscles.

- Exercise intolerance. I love to lift weights but lifting heavy weights makes things way worse. Running seems to be alright though. The combination of the lights and noises at the gym along with lifting heavy weights puts me completely out of commission.

- Panic and anxiety issues even though I feel very calm. It's like it is out of my control completely. I feel calm and have no reason to panic but my body feels like it is firing off in full panic mode.

- Dull pain in my chest on the left/middle around where my heart is.

- Unrefreshing sleep. If I don't sleep for 9+ hours I wake up feeling super tired. I don't have a hard time falling asleep or staying asleep, I just wake up tired and have a hard time getting out of bed. If I get less than 8 hours of sleep then I usually feel much worse that day.

- A constant desire to be sitting down, and sitting or laying down usually helps me feel better when it gets really bad.

- Moodiness. I'm used to be so level headed but now it doesn't take much for me to get really pissy.

- Heart palpitations. They are pretty infrequent but I do get them.

- Lower back and neck pain.

- I do notice that when I stand up after sitting for a while, I almost always get that "stood up too fast" feeling. It also happens sometimes when I walk up stairs. I've pretty much ignored this symptom up until recently because it isn't very bothersome compared to the other symptoms. Now I'm realizing maybe I should have taken it more seriously.

I went to the doctor after doctor and all of my blood tests were coming back normal except for a low Vitamin D (now corrected), high DHEA-S, and occasionally a low white blood cell count. Doctors kept telling me that I was depressed and to go see a psychiatrist for anxiety and depression. I wasn't satisfied with that and I kept pushing. About a year ago I found out I have hashimoto's and my thyroid is swollen, but all of my thyroid levels are perfect (TSH, T3, & T4). For 6 months I got tunnel vision on the thyroid diagnosis and researched and tried to find solutions. I changed my diet completely to a paleo diet and found that it helped, but it still wasn't a solution.

Then about 5 months ago I saw a new doctor and had a test for Lyme disease which came back semi-positive (testing for lyme isn't great, I had 3 out of 10 bands positive), so my doctor said that between the test results, my exposure to ticks (which is high, I like to fish in areas with tall grass), and my symptoms that we were going to start treatment for lyme. I've been taking antibiotics ever since the Lyme diagnosis, and while I think I've seen some improvement, all of my symptoms are still there.

Feeling a bit frustrated a few weeks ago, I decided to research why my symptoms got so much worse from stress and stimulation, which lead me to POTS, which led me here.

I know that I have Lyme but I think that the lyme has really screwed up my Autonomic nervous system which is what is causing the majority of my bothersome symptoms. I told my doctor about this and she said that we can discuss this further when I go to see her in a few more weeks.

So I'm looking to you guys for advice. Can anybody relate to this? Does it sound like it's possible that POTS is behind these symptoms? What should I ask my doctor? Any specific tests that will help? What can I do in the meantime at home make myself feel better?

Thanks everybody!

-jcad

[Katybug]

Hi jcad,

I have a few thoughts but I'll be brief now and come back later when I have more time. POTS sounds like it could be a possibility but, just so you know, it is likely that the POTS developed as a result of the Hashimoto's or Lyme disease or some other 8nderlying cause, not the other way around. So making sure there are not other underlying issues is key.

While sugar and carbs can seem to aggravate POTS for some people, if sugar is a very noticeable trigger for you, you might talk to your doc about ruling out a candida infection. That can make people quite I'll too.

Since you tested positive for Lyme, have you been through tested for Lyme coinfections? Some coinfections need other forms of antimicrobial treatment besides antibiotics to resolve.

Hang in there! I'll add some more thoughts later this evening.

Katie

[jcadwell9]

Hey Katie,

Thank you for the reply!

I realize that the POTS is a result of a different underlying cause, but I think most of the symptoms that I'm experiencing on a daily basis are symptoms from a disfunctional autonomic nerous system. I know that Lyme is probably the real problem here which is why I'm seeing a Lyme specialist and I'm pulsing antibiotics, but I'm also excited at the possibility that I could have a specific name for these symptoms and a reason why I'm feeling this way. It might help me gain some short term relief of symptoms and give me some of my day-to-day life back. It's the first time I've felt like I can connect all of the dots of my symptoms to make sense of them, and I'm hopeful that if I can find a way to effectively treat the POTS along with the Lyme then I will improve even more.

Before this idea I was thinking of all of my symptoms as an immune system problem and if I confirm that I have POTS then that will turn everything on its head and could change my treatment, that's all I'm trying to say. I might find more relief from increasing my exercise, fluid intake, and salt intake which were things that were not a big concern to me before.

I'll talk to my doctor about Candida during my next visit. Thanks for that suggestion. I get the same symptoms from walking into a grocery store or lifting weights as I get from eating sugar so my gut instinct say that its the same problem, but I'll have to get things checked out to make sure.

I haven't been thouroughly tested for coinfections. I was tested for babesia at the same time as the wester blot and it came back negative but that's all I've done. I'll have to talk with my doctor further about that too.

Looking forward to hearing more from you!

-Jcad

[jpjd59]

jcad9:

Sounds very familiar. My 26 year old daughter was diagnosed with POTS before she was diagnosed with Lyme disease. I'm so sorry that you too are suffering from Lyme.

It's great that you are seeing a Lyme specialist. Progress can be slow but at least you are seeing some improvement.

[Nymph]

Hi!

I'm sorry that you're going through this. It can be a long process but I would encourage to keep going as it will eventually improve your life to know what is wrong and recieve the correct treatment. Two things stand out to me - Hashimoto's and early shingles. Hashimoto's, as I'm sure that you know, is autoimmune. Many people with autoimmune diseases also have early shingles, often before their autoimmune symptoms begin. You have also had low white blood cell counts. This makes me think that you may well have another autoimmune condition. Autoimmune diseases often come in pairs and Hashi's is a frequent co-pilot. You may want to consider seeing a rheumatologist. The autoimmune condition I have (Sjogren's), occurs frequently with Hashimoto's and can also cause POTS. And, yes, there are young guys who get it despite everything saying its a disease of middle-aged women. There are also a number of other related autoimmune conditions that can overlap. That's what I would encourage you to do, especially if you don't think that the Lyme treatment is resolving your problem.

[jcadwell9]

jpjd59 was your daughter able to fully recover from the Lyme and Pots? Any advice on what treatment worked for her?

Nymph I appreciate your help too. I don't have any of the symptoms of Sjogren's so I don't think that is my problem, but perhaps you are correct that another autoimmune problem is also underlying.

[gjensen]

These kinds of illnesses have a lot of symptoms, and many overlap those from others. To avoid going in circles, it is important to try to get on a clear path.

Have you done a poor man's tilt table test? That is what I would want to do first.

[Nymph]

One more thought - celiac is also something I would look into, as it can cause many of your symptoms. The initial screening test is just a blood test, too.

[Katybug]

Hello again,

Here are a few more thoughts:

As you have had chest pain, have you had a complete cardiac workup (EKG, echocardiogram, stress test)? And then, if those don't show issues, you might see if the docs will send you for a tilt table test which is how a definitive diagnosis of dysautonomia such as POTS or neurocardiogenic syncope are made.

The weight lifting may be an issue because it mimics the Valsalva maneuver which would also be associated with some form of dysautonomia.

The cognitive issues could be from the autoimmune issues or from an autonomic issue that causes cerebral perfusion such as POTS. While POTS can reduce the amount of blood getting to your brain, the inflammatory chemicals from autoimmune issues can effect the brain function as well.

If you have already determined you have some food sensitivity issues, you may want to consider getting with an allergist/immunologist for more complete food allergy testing. I do not have classic food allergy symptoms but I test allergic to almost everything. We eliminated all grains including rice and corn and it has made a great improvement in my GI symptoms. It turns out I am actually more reactive to rice than gluten products, so the gluten free diet wasn't as productive as getting off the rice but we wouldn't have know that without the testing.

I understand your frustration, and I'm not going to lie, it can be a long haul to get improvement. But, you have to be your own best advocate. The doctors are not going to care more than you do, so it is important to be proactive and not give up on yourself.

If I think of anything else I'll add more.

Take care,

Katie

[statesof]

Hey jcad, just wanted to chime in as well, when my neurological and autonomic stuff started I had probably more symptoms than you but the ones we share include:

fatigue (would come and go and was terrible on somedays), brainfrog (also could be terrible), not feeling refreshed from sleep (typically I will feel anywhere from tired to exhausted even with a full nights sleep), brain feeling inflamed, digestive issues (told i have ibs), panic/ anxiety episodes coming in during non-anxious situations, headrushes almost everytime i stand up, mood swings, overstimulated easily by too much light and sounds (grocery store lighting is the worst).

I do not have lyme disease but was tested, as well as for autoimmune. Lyme can present with a lot of different nerological symptoms. I would probably consult with your lyme specialist to see which symptoms they would attribute to your lyme disease, and which may not fit. Since some of your symptoms do seem autonomic in nature (exercise intolerance, headrushes when standing, fatigue) you could always try and see an autonomic specialist or see if your current doctor would do a tilt table test to see if orthostatic intolerance is another issue for you.