I used to frequent this board when I was acutely ill with Lyme disease. I currently have put Lyme into remission and have been symptom free from Lyme and confections for over a year. I treated with oral antibiotics for three years and then IV antibiotics for seven months.
During the course of my Lyme treatment I was also diagnosed with POTS and something called Mast Cell Activation Syndrome (MCAS). My physicians and I believe the POTS and MCAS were triggered by the Lyme infection. Since treating the MCAS I have seen a stabilization and improvement in my POTS symptoms.
For those of you suffering from POTS or sensitivities/allergies to the antibiotics used to treat your Lyme disease or chronic Lyme that is refractory to antibiotics I encourage you to investigate MCAS to see if it may be a possible issue for you. Many of the symptoms of Lyme and MCAS are the same so it can be tricky to discern the difference.
There were times when I didn't think I would ever put Lyme into remission. I hope it is an encouragement to someone who has struggled for years that it is possible. While I do have collateral damage from Lyme in the form of POTS and MCAS I am thankful to no longer need antibiotics and to have identified these remaining conditions and to have treatment in place for those.
If you have any questions please pm me as I don't frequent this board any longer. Praying for you all, keep fighting and researching and pushing for the treatment you need to get well!
Posted by Kudzuslipper (Member # 31915) on :
Congrats Aimee!
Posted by lax mom (Member # 38743) on :
What did you take for MCAS? Zyrtec and Zantac? or something else?
Posted by Lymetoo (Member # 743) on :
Also wondering what the treatment is for MCAS.
So glad you are doing so much better! Posted by Kudzuslipper (Member # 31915) on :
Me too!
Posted by ukcarry (Member # 18147) on :
Great news, Aimee. Good luck to you!
Yes, it would be interesting to know more about the diagnosis and treatment of MCAS.
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