Lyme Disease Community
Need some advice...PLEASE
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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Need some advice...PLEASE

I will try to make this as short as possible...

I was bit by a tick on the back of my neck at about the age of 7 in Wisconsin where I grew up. Was never treated for anything. I did go to the Dr for lumps and swelling on the whole back of my neck but my mother said I was nover put on anything. Just told to keep hydrocortisone cream on it. Went through most of life with no real problems. I started having trouble with memory loss of big chunks of time and figured it was due to the stress of some serious life events going on through my teenage years.  I have always had joint issues and for years was told it was because I worked too hard as a child and young adult (grew up on a farm)

Fast forward to adulthood.....had 2 children and then 1 year after my last I had a hysterectomy. I started having weird things happen soon after the surgery. I chalked most of it up to age and stress. Mostly was joint pain and headaches.

A few years later I finally started looking for answers as my daily headaches became excruciating on and off. I started having tremors and my memory loss was getting really concerning. I was told that I had Migraines (but NEVER had light or sound sensitivity)

I had made several trips to the ER before I took all of this seriously. I have had MRIs, CT scan, bloodwork, spinal tap, etc. Gone through several drs. All the time being told they could find Nothing. On paper with all the tests I was healthier than normal! But my neurological exams always showed something was wrong.

I was finally tested for Lyme and it came back negative as far as the CDC is concerned (I had only 2 bands) My neurologist just shrugged me off. My PCP on the other hand felt that the 2 bands were enough for her and that I fit all the symptoms of Neurological Lyme.

I started on Doxy 2 months ago. After about 5 days I had a Herx. It was bad. Even thought it was hard to deal with my dr felt it was a good sign that the antibiotics were working and we were on the right track. For about 2 - 3 weeks after the Herx I was feeling a bit better. Some of the muscle twitches and spasms had decreased along with the headpain and fatigue.

Now for a bit I have noticed my symptoms slowly coming back and increasing. I have an appt with my PCP tomorrow morning.

She is not a LLMD and I have not been tested for co infections. I know she is not the best choice in drs at this point but I am unemployed and unable to afford travel right now. At least she is willing to treat me as best she can. I am not sure what she will do about the Doxy. Keep me on it or switch me to something else as it doesn't seem to be working right now.

How do you know that the antibiotics are either working or not? I have been so lost and frustrated for so many years. (I am now 38) I want this to end. Or at least get some long lasting relief. My symptom list is VERY LONG so I wont go into everything but i am so tired of missing out on life because I have become so limited with this body.

Thank you for any and all tips or words of encouragement.
3 Comments Post a Comment
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Avatar_f_tn
Is your doc openminded enough to read the ILADS website for Burrascano's treatment guidelines?  It could give the doc enough of a road map to test you for co-infections and also to know what OTHER meds could be used against Lyme.

I have read that doxy is effective only in the early stages, and not so effective against the cystic form that the Lyme bacteria adopt to protect themselves from your immune system and antibiotics.

Those are the two points I would hit with the doc:  (1) what co-infections you might have and (2) what other meds to treat with besides doxy.  

Good luck, let us know what happens -- hang in there -- !
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1763947_tn?1334058919
Hi,
Neurological Lyme is usually bartonella. In that case it is a different antibiotic, I am using levofloxin, sorry if spelled wrong. I had the herxing reaction every 4 weeks when first starting, now it is more spread out. It does get worse before getting better, your doc was right about being glad for the reaction. Most LLMD will start treating you according to your symptoms until co-infection tests come back so if you can't go to an LLMD, ask your doc for the other antibiotic. Google bartonella Lyme for symptoms first to make sure but it sounds like that to me in my non medical opinion.
Keep us posted.
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Avatar_f_tn
That is great that your PCP diagnosed you and is trying to treat you.  Unfortunately, LLMDs don't use Doxy for late stage Lyme because it somehow encourages the spirochetes to form cysts to hide from it.  (It is an excellent choice right after a bite or a rash.)

Definitely ask for Bartonella tests, at IGeneX if possible.  It is called b.henselae. It is usually treated with Rifampin or Levaquin (levofloxacin). Bartonella with Lyme is known to make the neuro and gut symptoms of Lyme worse.

Here is the ILADS treatment guidelines page that Jackie referred to.  You might print these out and read them, then go over them with your doc to see what to do next.
http://www.ilads.org/lyme_disease/treatment_guidelines.html

Glad you posted!  Let us know how it goes.

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