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- Tue Sep 09, 2008 12:45 pm
My husband age 65 has been dealing with this problem over a year now. Last year
he was having trouble sleeping, night sweats, fatigue, change in voice, depression, anxiety, bloodshot eyes, conjunctivitis, rash on leg, etc. and
also his blood platelets dropped to 19,000 at one point. The doctor thought for
sure he had either erlichiosis or babesiosis. He was treated with 30 days of
doxycycline and recovered almost fully. But this spring these same
symptoms occurred again. We live in the country and get tick bites all the
time. After several blood tests have come back negative the doctor proclaimed my husband to be cured and that there is nothing wrong with him. Yet he has
this miriad of symptoms. We saw a hemotologist who did a thorough work up and found nothing but that he has a platelet count that goes up and down. Not as
dramatic as last year. He calls it itp, an autoimmune disease. But this doesn't explain the other symptoms. We have done our own research and think he is still
suffering from one of the tick borne diseases. Most likely bartonella by the
symptoms. But with negative bloodwork, how can he get treatment? Is there
anything else with this presentation that we are overlooking? What can we do?
He can't go on without doing something. Please help.
| John Kenyon, CNA
- Sun Sep 14, 2008 4:28 pm
This must be terribly frustrating for your husband and for you as well. It's probably got your husband's doctor frustrated too, or soon will. It does sound as though your husband might well have had one (or more) of the tick-borne diseases you've listed as possible diagnoses, since he initially responded wll to doxycylene, which is indicated (either alone or with an anti-parasite medication); however, after having got better, he now does seem to fit more into the picture of ITP, which may possibly have been triggered by the bout with a tick-borne disease. While not specifically caused by tick-borne diseases, ITP can be "turned on" by any one of a number of systemic infections, stress, etc., for reasons not entirely clear.
There is treatment for ITP, if, indeed, that's what's going on now. While it's not as simple as taking an antibiotic, a positive response to treatment would certainly help solidify the diagnosis as well as help your husband to start feeling better. Methylprednolisone (a steroid) or intravenous immunoglobulin (IVIG) are the two most common treatments for ITP. Of course, first other blood diseases must be ruled out, so comprehensive lab studies should be done before treating for ITP, and also certain tick-borne diseases should be ruled out as well, which it seems they have been. No doctor is likely to treat a patient for something for which there is no basis for a diagnosis, so treatment for a tick-borne disease is unlikely. If ITP can be supported as a diagnoses, perhaps secondary to a tick-borne disease, then the abovementioned treatments are often quite effective.
I hope this is helpful to you and that your husband is soon on the road to a complete and lasting recovery. Meanwhile, I hope you're both doing your best to reduce the likelihood of tick bites, since these little pests are second only to mosquitos as far as insects spreading disease and/or toxicity.
Best of luck to you and please do keep us updated.
- Sat Sep 20, 2008 5:34 am
Thank you for your reply. We searched out other doctors. A hemotologist
who sent my husband for a cat scan and took lots more blood for tests. The only thing he came up with was that his immunoglobulin m count was very high. He
said showing that his body was fighting off probably an unknown virus. He said my husband should just deal with it and come back in a month. We also
found another family doctor who sent more blood to California. Finally, a positive
report for lyme. After a very long time, searching for help, we found a doctor who followed through for us and my husband has begun treatment.
Lyme and tick disease is at epidemic proportion on the east coast and especially in eastern suffolk county on long island. The DEC is so busy protecting the salamanders and preventing any spraying for ticks or even EEE mosquitoes which are also multiplying alarmingly, that the human population is in danger.
The medical profession isn't keeping up with this problem either and too many people are going untreated. The tests are not reliable and when a patient has symptoms, why does a doctor deny something may be wrong?
I pray my husband will eventually get well. But the delay in treatment absolutely made his symptoms worse and will make his recovery longer.
What can be done to bring this to the attention to the medical profession? Too many government agencies have their heads in the sand.
Thank you for letting me vent a bit.
| John Kenyon, CNA
- Sat Sep 20, 2008 11:00 am
Hi and thanks for writing back. I'm so relieved to know someone finally had the conviction to follow through and figure this thing out. It's rarely an easy diagnosis, but sick people are still sick and deserve the same standard of care they'd get anywhere else in the world. Your "vent" is appreciated, if for no other reason than that it will help bring the problem to the attention of more people.
As to how to help focus attention on the problem, there's no simple answer, but what you and your husband have done -- not give up nor accept second-rate care -- forces a part of the problem to move toward the solution. We all have to be advocates for ourselves and when we do we are also functioning, in some small way, as advocates for others.
The environmental part is even more tricky, as it is highly politicized. Writing editorials to newspapers and otherwise bringing the issue to the attention of the public is probably the most effective thing, but it won't yield results overnight.
Again, I'm happy to hear your husband has finally been dianosed and is receiveing treatment. Hopefully he will recover without any residual problems and meanwhile the issue will become lodged in the public's awareness.
My best to you both.