I have ITP and Lyme. My platelets have never been low enough to justify treatment. They're typically around 50 - 70K. I just found out that I had Lyme Disease in May. When I first started treating with the standard 200mg of Doxycyline my counts jumped up by 30k. I was really hopeful that they would continue to go up but alas they're back down to where they started at 65k.
Lyme does wreak havoc on your immune system. Your body is actively fighting a bacterial infection so if you have an autoimmune disorder to begin with I think it makes sense that your condition would flare in those circumstances. Then again some people say that when they're sick with a cold or something their counts go up.
Unfortunately any kind of immune suppressant drug like steroids is only going to further empower the Lyme bacteria. It will unfortunately thrive if you're on any kind of immune suppressant so taking anything in that category is generally frowned upon while actively treating Lyme. Occasionally people do have to go that route though. I was just reading about someone needing to use steroid eye drops to combat the Lyme related inflammation in their eyes. It might not help get rid of the Lyme bacteria but if it saves your ability to see then you have to do what you have to do.
I'm really sorry you have Lyme Disease on top of just having shingles and being busy with school. That's really awful. I hope you are able to put a lot of things aside for a period and focus on healing.
The medical world when it comes to Lyme disease is the biggest mess I've ever come across. Having an obscure condition like ITP is so much easier than navigating healthcare with a Lyme Disease diagnosis.
There are two camps in medical treatment for Lyme disease. One says you take 28 days of doxycycline at 200mgs and then you're essentially cured. The other camp says that You would need at least double the amount of doxy and people typically need much longer treatment.
Doxycycline at 200mg is prescribed to teenagers long term for acne but for some reason the standard medical practice for Lyme has deemed it unsafe to prescribe it any longer than 28 days.
So you have the standard medical practice following CDC protocol on one side and then you have a large community of physicians who have been treating thousands of Lyme patients in endemic regions who have found greater success with longer and more aggressive treatment plans.
What makes this medical standoff so harmful to the patients lost in the middle is that Lyme disease can potentially be cured if caught early and treated effectively. The longer the bacteria stays in your system the more it replicates and spreads throughout your body, making it essentially impossible for antibiotics to ever completely eliminate.
There are a lot of people who go on to develop chronic lyme who were only treated with the minimal 28 day doxy regimen. I'm sure if they had been aware of the risk of only choosing the minimal treatment they would have instead opted for a few extra bottles of antibiotics after first being diagnosed rather than waiting to see if symptoms arise months to years down the road when treatment options are far more bleak.
I think I've had Lyme for at least five years before being properly diagnosed so I'm currently taking 3 different antibiotics and I'm looking at staying on them for 6 months to a year.
In order to properly treat Lyme disease, in my opinion, you need to seek out a Lyme Literate MD, otherwise known in the Lyme community as an LLMD. Regular physicians hands are tied by outdated regulations.
In most states it's actually illegal for a Dr. to treat Lyme patients with antibiotics for longer than 28 days. They can be prosecuted and have their license revoked or suspended. More and more states are beginning to overturn these laws but in the meantime the number of untreated people with lyme disease keeps growing.
Finding a Dr. becomes this clandestine operation. The internet, thankfully, makes it easier. You can go to ILADS and request a referral. I got three completely legitimate and decent Dr.'s names from them.
ilads.org/ilads_media/physician-referral/ I found this online Lyme community group that has a lot of people sharing information. It doesn't have Sandi but they've been helpful. lymenet.org
Also, Unfortunately Lyme can come with a handful of Co-Infections. Ticks carry a number of diseases and they are all difficult to get rid of. I know Ehrlichia and Babesia specifically cause thrombocytopenia. And I believe I've read that thrombocytopenia is associated with the Lyme bacteria borelia burgdorferi. Here is a link to an article that goes into detail on how tick born diseases specifically effect platelets.
Mechanisms of thrombocytopenia in tick born diseases. By L. Pantanowitz on ISPUB.com
ispub.com/IJID/2/2/3023 I don't think you have to worry about Dr.'s wanting to remove your spleen while you're dealing with this. Having a spleen is very important while fighting Lyme disease and the co-infections. I just hope your Dr.s realize that.
I hope some of this info helps.
