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I have been recently diagnosed with Lyme's - finally, after 5 yrs of symptoms - and am now receiving IV Rocephin, Plaquenil and taking Actigall as a preventative for gall bladder issues. (started with doxy for two wks, been on Rocephin for two weeks now.)

Question: have been getting what my doctor calls Herxheimer reactions where it feels like your symptoms are getting worse. Has anyone been through these and how long do they last?? Although my mind is clearing (I had a lot of mental issues - mind fog, concentration, short term memory loss, depression, mood swings, etc. due to the Lyme's), the fatigue and listlessness seem somewhat worse. Could this be the toxins? I'm on a strict yeast-free and sugar-free diet -- dr's orders. Also taking probiotics and antifungal.

Any help would be great. Thanks !!!

More about my story: in Sept 2002 I thought I had a tick disease but all tests were negative (or so my doctors thought - I now know my Western Blot IgM was actually positive in 2002 cause I hit on band 23) so never received any treatment, in 2004 I went back to dr's and said I have no energy don't feel right, etc. so they said I had Babesiosis and treated me for that (I now know I never had Babesiosis - and they knew it too cause they test they ran was clearly neg but they still treated me anyway and never did a Lyme's test).

From 2005-now I have had recurrent upper respiratory infections, sinus surgery, fatigue that became extreme. Had dr's tell me since my blood counts were normal, I could not possibly have any infectious disease.

Then early this year - thank goodness - had a test that tested my nutrient levels and turned out my protein and other essential nutrients were severely depleted across the board. I had also developed extreme food and environmenal sensitivities/allergies that I never had before. (Am on 5 allergy shots a week and also had another sinus surgery.)

Went through all the specialists - even top infectious disease/Lyme's specialist who said if my blood count is normal, my lymph nodes are not swollen, I don't have a temp and don't have joint pain - then I can't have Lyme's! My allergist (who also had Lyme's) suggested another Lyme's specialist.

Took 3 weeks for appointment but as soon as this dr. heard my symptoms - extreme fatigue, mental issues, general stiffness, etc. and saw the 2002 Western blot - he said I have Lyme's. He did another Western blot in addition to a ton of other tests for co-infections - Lyme's IgM came back strong positive (even under CDC and NYS criteria)!

He immediately petitioned for the IV Rocephin because he explained that given my mental issues the Lyme's is most likely attacking my brain.

Other - my allergist found staph infection in my sinuses that, of course, is resistant to Rocephin so I am also on IV Clindamycin.
Hi Im123, welcome to the board!

I am sorry you have been sick for so long, but it is good you are getting treated. Often infectious disease doctors are not the best to see for Lyme (such as the one you saw). Which doctor are you seeing? There are a couple of excellent ones in NJ.

Were you tested for the co-infections Babesiosis, both types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma? This is important. It is estimated that 60% of people who have Lymea are co-infected.

The Jarisch-Herxheimer Reaction (herx) is a very common reaction in people getting treated for Lyme disease. You can get an intesficiation of symptoms or new symtpoms. Although it varies individually, many people experience this at the beginning or change of treatment and every three to four weeks. Over time, they should become less severe.

It is good to document your symptoms. One easy way to do this is to list the three main symptoms you have each day with a numerical rating of their severity, from 1-10. Over time when you review this information, you can see when your herxes occur and how you are responding to the meds.

Do you have a PICC line? In case you did not know, there is a great sleeve you can get so you can shower without getting the site wet. It is called a Mid-Arm Protector, and you can get it at Brown Medical.

Eating healthy will help. Also make sure you exercise as much as you can, drink a lot of water, and get enough rest.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

It can take time to recover and it is normal to feel worse before feeling better, but with proper treatment you can get better. Good luck with your treatment!

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