Seeing infectious disease doctor

Hi Mayor,

Welcome to the forum.

To get useful info., read the first thread on the forum.

Lyme--both in the way it's tested, as well as the chronic phase of it--is controversial.

I hate to say this, but an Infectious Disease doctor is probably the last type of doctor you want to see. The IDSA is not at all supportive of people with Lyme.

I would suggest seeing a doctor who specializes in Lyme, or an LLMD.

I would post a question on the forum asking something like, "Looking for an LLMD in (state)." Then add your state's name.

Most Infectious Disease doctors do not believe in Chronic Lyme.

Margaret

I don't think very many ID docs accept the truth about lyme. It can be chronic and persist and exist with other coinfections.

They probably all follow the CDC guidelines. about 3-4 weeks of Doxycycline and the symptoms you are left with are the "aches and pains of daily living". You might be wasting your time.

What are you sypmtoms? What's your story? If it's a recent bite an ID doc can probably help you. If not, you probably need an LLMD. Maybe there are ID docs out there that are lyme literate?

Not to intrude on this subject, but Is it possible to have lyme without any pain? I'm curious.

Welcome!

The migrating symptoms that come and go are a sign of Lyme. It sounds like you are in good hands.
Best of luck to you and hope you'll report back.

@Dolph ziggler fan

I have Lyme (Igenex/CDC positive) and have had no pain or fatigue. My symptoms are all related to my peripheral nervous system. Since there are over 100 strains of Lyme bacteria in the US alone, it makes sense that each of us can be affected in a different manner

Teragram- what symptoms do you have and when you herx if you don't mind me asking?

Yes, I know someone who had lyme and pain was not a symptom- her main symptoms were chills, anxiety, and cognitive issues.

Mayor, ifno one has mentioned yet you may als want to get your thyroid checked. Long term untreated lyme and coinfections can impact other systems in your body. I have been battling this for over ten years but tbe tbyroid problems just started late last year, the difficulty swallowing came along with that, I knew something else was wrong cause I was having trouble swallowing small pills. Another reason to see an llmd is they will consider the big picture which can involve so many body systems, endocrine/thyroid being one of them. The minimum initial tests will likely include TSH, Free T4, Free T3, Reverse T3 and the thyroid antibody tests. Good luck and let us know how things progress with you.

Hi all! The Mayor from Southern Jersey was almost down for the count this morning. Wife took me to emergency room. Bad blurred vision, loss of appetite, disoriented, sweats, hands were numb.

Sooo out of sorts, the hospital staff took good care of me. Blood test for lymes, liver, pancreas, blood cell count etc...All came back good but won't have results for a couple of days on the lymes.

Hospital doc touched base with the ID doc and he ordered them to take more blood to test for Babesiosis and Ehrlichiosis.

After the hospital moved on over to keep my ID doc appt. He prescribed Doxycycline 100mg and need to go back in one week to see if there are any improvements.

Cross my fingers!

Hi Mayor!
Wow, I'm so sorry that you had such a rough time. Unfortunately, those symptoms are not uncommon for Lyme patients to deal with.

Do you happen to know if your ID doc expects to raise your dosage of Doxy? 100 mgs a day isn't enough to even stop the bacteria from replicating. It takes at least 200 mgs a day to stop them from replicating, and 400 - 600 mgs a day to kill the bacteria.

If you need some help in finding a Lyme Literate doctor to treat you, please do let me know, I have referrals for NJ that you can go through.

And don't forget that we are here to help you with questions or suggestions that you may need!

Hi Mayor!

Glad you got some help and that your follow-up is just one week away. I also see an LLMD who is also an ID doc--so glad he doesn't fit the stereotype! He's definitely open-minded and knowledgable but cautious in his treatment. I'm on doxy 100mg/3x day to start, ramping up if I handle this well. We followed up again after 2 weeks of improvement; he will recommend the herbalist once we see how I improve after 6 weeks total on the doxy. He may increase the meds or change the prescription at that point as well, depending on how things go...I am comfortable with this slow approach but am also collecting names of other LLMDs/LLNDs/Herbalists who may take a different approach if needed in the future.

Dolph, I had horrible migrating shooting pains in my youth/teens and other pains throughout adulthood but nothing serious in the last decade. It's definitely the neuro stuff in my 30s instead of anything really painful.

Good luck, Mayor, and please do keep us posted!

Maui