I'm new to this site so forgive me if I'm posting in the wrong place. I'm looking for some advice regarding medical issues that I've recently realized may be related to Lyme. I'll try to keep it short, and I'm happy to discuss more at length in private messages or email.
About a year and a half ago, I started experiencing severe blood pressure spikes and a hive-like rash on my face and neck. I hesitate to call the rash hives because it appears more like a combination of flushing and rosacea.
I've seen two dermatologists to no avail, walking away with a rosacea diagnosis and a treatment plan of "sorry about your luck."
I've seen two primary care practitioners for blood pressure and am currently taking two prescriptions meds for BP with no idea what's causing it.
I also experience almost daily migraines which no doctor has been willing to treat or acknowledge, terrible night sweats and awful insomnia.
I'm seeing a psychiatrist and therapist now for anxiety and depression, and I'm on a cocktail of meds for that too.
It's been a pretty miserable year of not being able to work or live my life how I used to.
I don't recall a bite that would be the start of a Lyme infection, but I live in between woods and farm fields, spend lots of time working outdoors, and have also struggled with flea problems with my cats and dogs. A friend of mine was recently diagnosed with Lyme and Bartonella.
I had blood work done in the fall of last year with a few abnormalities that concerned me, but didn't raise any red flags with doctors. I don't know anything about what these mean but here are a few of the abnormal markers:
I guess my question is: is it logical to assume I may have Lyme? Will I sound crazy if I ask my doctor to test for it, or am I best off going to yet another doctor?
I have felt like crap for such a long time and I feel like a hypochondriac, but it really seems like this makes sense. I would so appreciate any feedback or thoughts about my situation.
Thanks so much in advance and have a great day!
-Zach
(breaking up the post for easier reading for many here)
[ 03-25-2017, 10:15 PM: Message edited by: Robin123 ]
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet! PM sent for OH & IN.
I recommend you also write this post in "Medical Questions", because there are many knowledgeable people here on Lymenet who will gladly give you advice.
I am not a doctor, but your symptoms sound like Lyme to me. Fyi - my son contracted Lyme disease from mosquito bites (any biting insect can transmit it).
Borrelia burgdorferi, the bacteria which cause the disease, pass the blood/brain barrier so neuropsychological problems can also result. "It's all in your head" is a common so-called "diagnosis" when the non-Lyme doctors don't know what is going on.
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between, so you need to go where they are. At least half of all Lyme patients travel out-of-state for treatment.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.
Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posted by Lymetoo (Member # 743) on :
Moving to Medical Questions for more help.
Welcome~! Posted by Lymetoo (Member # 743) on :
Hi, Zach. Welcome!
I've had Lyme for most of my life, but I found out a few years ago that Mast Cell Activation Syndrome was also a part of the mix.
Many of us have the flushing and the hives. (not everyone!) It can also affect the heart.
So .. please look over this information also .. It is very much connected to Lyme and other infections.
Many never see the tick(s) that bit them, or perhaps other infected insects that bit them.
It's typical for Lyme to throw off our sleep, induce hives, and affect us mentally.
A co-infection, Babesia, causes night sweats. It's a protozoan, not a bacterium, and gets treated similarly to how malaria is treated.
Question to the board - I've heard ehrlichia can cause headaches. Does that include migraines or can people here tie migraines to any of the other illnesses?
You will need to see a knowledgeable Lyme-treating doctor for workup and treatment.
Posted by Tincup (Member # 5829) on :
Hey to you up there in the castle...
You might start with your regular doctor and see how it goes. He/she can run some blood work for tick borne diseases if they are open minded and willing to try.
If you end up going to a Lyme treating doctor later you'll probably need (or be required to have) a regular doctor to follow you locally, so try not to burn your bridges and proceed with that in mind. (Nicely.)
If test results are negative and your doc won't accept the fact that 75% of people tested for Lyme showed negative when they actually had it, then move on to someone who cares, knows more and will listen.
For blood work I'd start with IGenex Lab.
Here is some info on Lyme testing and how to get a test kit sent to you. There is a form for patients and one for physicians to use.
And yes. It is very logical to assume you may have Lyme and possibly Bartonella too. Good research on your part!
Your location, symptoms and the fact no one has pinpointed the source of all your problems is a bell ringer in my book.
To see the description of, a list of symptoms, diagnostic methods and treatment overviews for various vector borne diseases you can find a list of them here.
As for those migraines. ?? Have you had your progesterone and estrogen levels checked (if you are a female)? That might be a consideration too while you are having blood work done. A low progesterone level can beat you up with bad headaches.
Hope this helps and you are feeling better real soon!
If not Rapunzel, let down your hair so we can climb the golden stairs. We are here to help! (And we know if we don't you could order us banished from the home land or worse!)
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