Natural to question Lyme diagnosis?

Is is natural is question a Lyme diagnosis?

I'm still early in my treatment, going into my second month of amoxy, and I can't help but question if I truly have Lyme. It's ironic really, because before I was diagnosed I was convinced I had Lyme instead of Fibromyalgia or Lupus, or Rheumatoid Arthritis, rspecially when I tested negative. Then I saw a very sweet LLMD (he even hugged me twice) and clinically diagnosed me. I remember being so happy when I left his office because I finally had a answer to all my symptoms and problems.

Then I started to wonder if he just told me what I wanted to hear. He said I had so many symptoms across the board and some were common in Lyme patients. Like the tingling in my hand and arm, and extremely low vitamin D. But as I'm treating myself with abx and vitamins and diet change, I'm still having issues with my digestive system and symptoms disappear and come back, some seem to have migrated. I had a few days were I was okay. It seems like i start feeling a little better a couple of days and then start to feel worse and then feel better again and then feel worse. It's like a roller-coaster and I'm not sure I should be on it.

I know a lot of this is anxiety because I have an endoscopy coming up this week and I'm scared they are going to find something else wrong. And then it'll be "no it was never lyme, it was this the whole time." Should have had this test and bunch of others back in June or July, but every time I called for an appointment nothing was available until October.

I know Lyme is called the Great Imitator and I'm scared it's imitating something serious they haven't found yet. I asked my LLMD if he was going to test me, like through Igenex and he said he doesn't bother because everyone comes back positive. That didn't comfort me. I would like to have the test done and I'm going to see another LLMD in a couple of weeks, but what if she doesn't bother with it either? Then what should I do?

I hate this fear. I hate feeling terrible. How do you guys deal with this?

Cheetah what you are describing is typical for tick borne infections. I am purposefully saying tick borne infections because you cannot think of it as only Lyme. You have to always assume it may be another yet undiagnosed infection. It can also be Chlamydia Pneumoniae, Mycoplasma, and a number of other things. Praying for a correct diagnosis for you.

"as I'm treating myself with abx and vitamins and diet change, I'm still having issues with my digestive system and symptoms disappear and come back, some seem to have migrated. I had a few days were I was okay. It seems like i start feeling a little better a couple of days and then start to feel worse and then feel better again and then feel worse. It's like a roller-coaster and I'm not sure I should be on it. "

You just described Lyme disease!! It has ever changing symptoms most of the time, along with emotional ups and downs too.

Are you sure that your doc said that "everyone comes back positive" or was he referring to those with symptoms like yours? That would make more sense.

If you wish to be tested through Igenex, you don't even need a doctor except to get the order to draw blood - so any doctor will do. You can get a test kit from Igenex and have the blood drawn and then follow the instructions to send it back to them.

And if Lyme creates another medical issue, then you have to still treat the Lyme in order to be rid of the other issue.

Why are you having the Endoscopy? What are they looking for or at? Sorry if you have already said what it is, brain fog is thick today!

Thank you everyone. I think i'm having one of those days when you wake up scared.

Lymebabe- Thanks. I know you've been through a lot and made it through stronger. Would you know if IGenex would test for those? Are their other tests? I'm glad you're feeling so much better.

Opugirl- Thanks for your response. I think I've been herxing the last few days and it's effecting me. If you don't mind me by asking, but what kind of digestive problems did you have? I have pain on both my left and right sides of my upper abdomen, gerd, constipation and diarrhea. Trying to get better through diet and probiotics. I'm even try acupuncture to see if that will help. Some days aren't so bad but others, like today, are awful and frustrating.

Girlie- I'm wondering if I should get my blood work done again. I want to but at the same time scared. Ugh! I hate being so scared of everything all of a sudden. Please let us know when you start to feel better.

Traveler- You always have such great information. I have a feeling that getting a doctor to sign off on the blood work and test will be easier said than done. But yes that is what my LLMD said, it always comes back positive. But to me, how else would you know if I have any co-infections. From what I've been reading and people have been telling me, my symptoms sound like babasia and/or barts. My GI doctor is doing an endoscopy because of my abdominal pain and weight loss. Honestly, I think it was the weight loss that had her concerned, about 35 lbs since June. Considering the diet change and some bad weeks where I didn't eat much, yeah I could understand the weight loss. But she was very upfront and said she was checking for cancer in my stomach and small intestine. Personally, I'm worried about my gallbladder, liver, spleen, and pancreas. I feel like it could be a number of things. Plus, I've been having these issues since June and feel that i should have had the test then instead of forcing me to wait. I think I'm just scared and upset and angry at so much. I just want answers and doctors seem like they could care less sometimes.

Hi Cheetah,

I mainly had random stomach pains/digestive pain that would move about from stomach to colon to trace amounts of blood in my stool from being constipated. Lately, and since off of antibiotics my stool is just hard but I'm technically 'not constipated' since I'm still 'going' most days.

I also had minor stomach ulcers right after going off of antibiotics but that was alleviated relatively fast with a high fat diet recommended by my nutritionist. Otherwise I couldn't drink coffee/wine etc. without my stomach burning.

I sure hope you feel better soon!

~beth

Just FYI, chiropractors can sign off on Igenex testing. That was the route I went instead of dealing with my PCP. You might try that if your doc doesn't want to test you. If it were me, I would absolutely at least run the Igenex Western Blot. It doesn't definitively tell you anything but along with clinical symptoms, to me it is an important puzzle piece.

Before I was diagnosed with Lyme disease, I was sure I had it. Now, I wonder.


Jane

Yes, I made my own kefir with raw goat's milk - it was yummy!

Upper abdominal pains can be from the intestines, or other organs. LOL! That was helpful, right? Why don't you check out this link- it's an interactive body map:
www.healthline.com/human-body-maps#1/1

Something else that just came to mind - make sure you need the PPI's (proton pump inhibitors), as I need to take digestive enzymes because I don't have enough acid in my stomach.