Posted , 2 users are following.
Hello!
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:
Segmented neutrophil: 71.7
Lymphocytes: 15.0
Monocytes: 8.4
Eosinophils: 3.6
Basophils: 1
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
0 likes, 3 replies
jennifer06801 zcastle
Posted
Hi Zach,
I'm sorry to hear you're going through this. I know first hand how difficult it is. Your timeline is very similar to mine. I started out with HBP which took a combo of two meds to control. I developed anxiety shortly afterward for the first time in my life (I've always been a very calm person). Not anxiety in response to anything but just sort of unspecified. This coincided with mild depression and was difficult to treat. I started getting a combination of random, odd symptoms - had the face rash (lyme can produce a number of different rashes). Mine went across my face almost like the lupus butterfly rash. It felt like sunburn to me and my skin would feel red hot inside. I developed a temperature regulation issue where (especially after a shower) I would feel awful, profusely sweating, although I didn't know if I was hot or cold. I never seemed to be comfortable temperature wise. I'm sharing this as it seemed to coincide with the rash. Night sweats and insomnia are also a Lyme red flag that I had ... and the worst headaches that couldn't be relieved by anything. Also had cognitive issues (memory problems, word finding, concentration, problem solving, etc.). And crushing fatigue.
Has your response to alcoholic beverages changed? (If you don't know it might be worth investigating as this is a huge Lyme red flag!).
Many people with Lyme experience such random unexplained symptoms that they either feel like a hypochondriac or are called one by others, including their doctor.
I think you definitely should see an LLMD. I never tested positive (which is very common) but am being treated for Lyme, Babesia and suspected Bartonella. I'm finally starting to feel better but it's a tough battle. Oh - if you do end up treating for Lyme, I highly recommend supplementing your treatment with vitamin, mineral & herb supplements. Seek out an expert in this who has experience in helping those with Lyme. It makes an enormous difference and will make the fight more bearable. For as horrible as Lyme is, when you start treatment you'll most likely feel worse initially. Good luck to you - hope you feel better soon. Jennifer
zcastle jennifer06801
Posted
Thank you SO much Jennifer. That is very useful information for me and I'm so happy to hear your supportive words. I can't thank you enough for taking the time to share your experience. It means so much to me. I'm glad you're feeling better and I hope your treatment continues to be effective! Thanks again. Zach.
jennifer06801 zcastle
Posted
Hi Zach!
I'm glad you received my response.
Feel free to email me if you have any questions at all. Honestly, I'm more than happy to help you in any way I can. (I'll message you my email.) It somehow makes this all more bearable if I know that I can help someone else by sharing what I've experienced and learned through fighting this terrible disease.
That being said, I must forewarn you that I can be forgetful and repetitive (as a result of having neurological Lyme). I always joke that you know I really mean it if I keep saying the same things over and over. I often have little recollection of the exact content of previous conversations.
When my doctor FINALLY figured out what was wrong with me, she told me that almost every one of her patients that has Lyme has one or more dogs as pets (as did I until recently) and lives near woods or frequently visits them (I live in the woods in rural Connecticut in the States). With Lyme you really have to use all of the information at hand - and your story seems very indicative of Lyme to me.
What other symptoms have you experienced? What would you say are your top three to five worst symptoms (I know that's a hard one!) Do you feel "sick"?
Whatever you do, don't take any steroids (corticosteroids) in any form. If you do in fact have Lyme, it accelerates the disease and causes permanent damage. Often times it's the process of taking steroids that leads to the diagnosis. For example, I got very sick last autumn (before I knew I had Lyme) and had to receive both oral and injected steroids (I had a chest cold that quickly developed into pneumonia and was having difficulty breathing). Shortly after receiving the steroids, while my "cold" symptoms went away, I still felt sick and very fatigued and run down. That got progressively worse until I finally just couldn't get out of bed. (My husband and I have four young children so I probably pushed myself harder than most people would have as a result of necessity.) In any event, that reaction to steroids was a Lyme red flag for my doctor.
The change in response to drinking alcohol is a huge red flag too. Not everyone has that response, but if you do, it's pretty clear you have Lyme. I will advise you to be careful if you decide to test that one out: Don't overdo it. I wouldn't drink more than you normally drink in a sitting to figure this out. Maybe one or two drinks. Three tops. I don't want to share the exact effects with you (unless you want to know) as you'll probably feel more confident in the results of this little experiment if you try this out blindly. That can be invaluable as I know the self doubt that comes with having this disease ... especially if you test negative!
After I hear back from you, I can give you some advice on what you can do now while you're in between suspecting Lyme and getting diagnosed and starting treatment, if you'd like.
Either way, good luck to you. I hope you are feeling better soon.