Do I really have lym

Hi I’m new here. Well kinda. I’ve been reading posts for about 6 months trying to educate myself about what is happening with me. I’m gonna try and keep this short but it’s been a long road.

I’ll start by saying I’ve always had ticks. I was a fisherman, mt biker, have a cabin in central pa. Let’s just say as a single man I’ve been in the woods plenty. Anyhow it was in June of 2015 I developed with much controversy by drs genital wart looking lesions and anal discomfort and itching. So of course I had no positive std test. In dec of 2015 I had developed throat pain and mouth and tongue swelling. Still no diagnosis to that. That persisted until sept 2016 I got into a nest of ticks. Little seed ticks. I had about 50 of them crawling up my shorts and all over my body. I was picking them out of me for hours and I’m sure I didn’t find them all. They were so small. Anyhow I just kinda brushed it off and forgot about it. In nov I got really sick. Like a weird sick. I was sore and I remember my teeth hurting. It went away and I didn’t think anything of it although I did take the elise test multiple times. I know realize that test shouldn’t exist. Here’s where the weird things started happening. I developed this hard muscle twitching in my abdomen. In feb17. I just let it go. Until a month later my left leg went numb and the twitching also started in that leg. about another month passed the twitching and numb feeling went to other leg. This process kept going. about monthly or so the twitching and swollen numb feeling move somewhere new. August of 17 I started to get this weird dizzy feeling that I was able to cope with and just kept pushing on. I’ve just dealt with those progressive symptoms until May of 18. Things got really bad. The dizziness became terrible. And I developed lower back pain and severe testicle pain. The doctors said it’s epididmytis. I went thru all their treatments and I still have testicle pain. I was convinced I have syphilis. Every doc I talked to I mentioned syphilis. I had 3 neg tests. Until about aug 2018 I started getting shooting pain randomly everywhere. Ear ringing. Blurry right eye. Pain. Muscle and it feels like bone pain. Constant twitching everywhere. Stomach pain. Nausea, feet pain , that was also the start of joint pain. I researched more and I knew it had to be lymes. Now a neg western blot under my belt from quest no doctors wanted to help. Fast forward to now. I also have constant teeth pain. Facial pain. That moves around my face. It’s a swollen feeling. Tingling. Itching.

I found a doctor in November and she put me on flagyl and doxy which I still take today. I do have a llmd which I just started with in February. He added a few other antibiotics to the list. I think I have confidence in him. I’ve seen happy people on this forum with him also. He believes I have lyme and bartonella. I did take the dna connexions urine panel. It was completely neg. I don’t believe that test at all. The doc said don’t worry about it. He’s going off my symptoms.

Anyhow after my treatment started. December was a nightmare. All my symptoms went haywire for about a month. I don’t understand Herxheimer or flares... I’ve been detoxing. I take tons of epson baths. Pinella burbur drops. Lemon water. Milk thistle/silymarin..

I guess I’m looking for support and advise. I’ve had a decent month of January but my symptoms are back horribly again and it scares the heck out of me...

I guess what are your thoughts on my story? Do you believe I have lymes and bartonella?

When will I start becoming me again?

I’m 3 months into treatment and really feel like I got nowhere.. I’m upset depressed and feel like I can’t do this.

Can anyone else relate to this facial swollen felling? And teeth pain?

Can these infections cause symptoms of a virus to become active? Like I said about hpv warts?

Oh and I feel like a lot of my stuggles are neuro . Especially sleep. Something that is not normal anymore. I start falling asleep and my body jerks really hard. And I jus lay there like I’m awake but the hours just pass. It’s scary. I either don’t sleep or I’m completely exhausted... I also get a lot of random rib pain and little red dots on my skin.

Sorry about the lengthy post. If someone can shed some light on my concerns or just give me a bit of hope it would be appreciated...

Post Edited (Mbressi02) : 6/28/2024 5:30:13 PM (GMT-8)

Hi there, welcome to the forum! It does sound like good probability that you have lyme and possibly other tbd like bart given symptoms and tick exposure. Do you get any skin rashes?

It also sounds like the antibiotic treatment is making you flare strongly. Could consider less aggressive approach and gradually build into stronger treatment. I think some patients have mast cell issues related to the infections and die-off, could always try antihistamines to see if they give you any relief. It can take a while to see improvement, and if the herxing is intolerable def consider downshifting for a bit or looking into pulse therapy.

In regards to viruses yes the various infections can activate them. Are you familiar with monolaurin (lauricidin)? Supposed to be good for the various herpes' viruses.

Wow thanks for the quick response. Coolio you seen results after a month.? My first month was terrible...

I’m seeing the doc in myerstown pa. I’ve seen him involved in a few posts here. I’ve only had one appointment to this point but I think I feel ok with him. If anyone else has experience with him I’d love to hear about it. And the only rash I get are little red dot rash looking things that show up and disappear in a few hours to a few days.

The first six weeks or so of treatment was terrible. Then some of the symptoms just stopped. And I had a decent month but symptoms have returned and are bad again. Is this typical with treatment.? This roller coaster of ups and downs? I though I was thru the worst but I guess not? Does the returning symptoms mean treatment is not working or is it typical for this to happen?

Welcome friend! I’ve had almost mirror symptoms and my doctor thinks Lyme and bartonella are my main issues.

Interestingly enough my reaction to treatment has been very similar, rough first few months with strong herxs in the last few weeks.

Just remember it’s a war not a battle. It’s a multi year process unfortunately.

Take care.

It can take longer than a few months. Did you experience a herx from treatment?

What antibiotics are you currently on?


You may need to treat Babesia.

Trust me its lyme. I have read a lot of posts on here but i share the most symptoms with you. I had all the symptoms you have except a few. It can take a while for symptoms to resolve especially nerve stuff like twitching and spasms. Unfortunately you just have to ride it out. You may have other viruses or even mold issues. If you have a lot of mold in your house it will weaken your immune system.

I'm pretty sure that's why i started showing symptoms after being asymptomatic for 7 years. You can look into babesia but just be careful not to take a bunch of unnecessary antibiotics.

Also do you have a lot of energy? Would you be able to go for a jog or play sports or are you too sick for that kind of activity?

Was the teeth pain explained? I would guess a nerve, or bart in the vasculature.

Have you tried Gabapentin or Lyrica for the nerve issues?

Mbressi02 said...
No I have not. I don’t know much about either? What other symptoms come from the nerves? Whould this help other things possibly?

One other thing. Does herbs elevate liver tests? I’m trying to get my numbers down so I can start antibiotics again. I’m afraid to bail on everything and let this infection get stronger. As non antibiotic treatment I have . Serapeptase , houttynia, teasel root and I also use pinella/burbur

Both Gabapentin and Lyrica help with nerve pain, burning.
I tried the Gabapentin and it didn’t help - I have a script for Lyrica but I haven’t filled it.

Many people do get relief from one of those.

Pain, burning, and possibly other nerve issues.

I don’t think those herbs should be too hard on the liver imo but it’s best to do a liver function test after you’ve been on them for a couple weeks.

It does sound like lyme & bart. I’ve had some of your symptoms. Neuropathy can present as numbness, buzzing, crawling, tingling, cold or burn. Our nerves are just messed up. Have you checked b12 levels? It can cause nerve issues. Magnesium can help calm things a bit.

With the teeth - could be infections. Or, do you have root canals, etc? I think bacteria can hide out there where antibiotics can’t reach.