I have been "lurking" this site for almost the entire time, and everyone here has given me so much courage, hope and information over the course of my treatment. I never really felt able to jump in, but Lymenet has really been my lifeline for the past year or so.

My poor mom (64 years old) was feeling absolutely awful for months since the early spring, with all kinds of cognitive and memory issues. No physical problems at all but big troubles in her head, short and long term memory, word retrieval, full feeling in her head and neck and so on.

Of course, after all I've been through, my immediate thought was lyme as she has been an avid gardner (especially at my house!) for years.

Her thyroid was also suddenly off (she's been hypo for 30 years). Her endocrinlogist ordered blood work, including a Lyme titer from Quest and to my surprise it came back positive!

He started her on Doxy 200 mg and I took her immediatley to my LLMD (Westport Medical Arts). They upped it to 300 mg, sent out to Igenex, which came back with positive titer and CDC positive on IgM and IgG. I thought we were all set! She was herxing like crazy but not feeling better at all.

Finally, we got her in for an MRI and last Friday we found out she has a tumor growing in her temporal lobe the size of a lemon.

She is scheduled for surgery on Friday and has been hospitalized since yesterday b/c her neuorsurgeon believes it is too dangerous for her to be home.

Needless to say, I am in a state of shock and probably not thinking too clearly.

We d/c the doxy on Friday when we found out about the tumor. We were afraid of all the "intra-cranial pressure" the pharmacy enclosure always warns about on the doxy scripts. She has been getting very bad headaches two hours after her dose.

The neuorsurgeon actually asked me what the expected dose and length of treatment was for Lyme. He seems very good, but as usual not LL at all, (but at least willing to listen!!)

However, they are calling in the infectious disease doc they have at the hospital (who I saw early on and who told me I had cervical instability in my neck and needed surgery ASAP...even with a bulls-eye rash and classic lyme symptoms!) Obviously, I'm not too confident in her opinion!

The biggest problem I see right now is that they have her on 16 mg (and increasing the dose) of Decodron (steriod) to reduce some of the swelling prior to the surgery.

Clearly, we need to do this. I am just so worried that if she makes it through the surgery, just what will happen to the Lyme. Does anyone have any experiences similiar to this? I am wondering what adding the Doxy back in might do.

I feel like it is imperative to keep her fighting the Lyme, but I'm so afraid of taxing her poor head further. I'm equally afraid and aware of what the steriods can do to her. The doctors, as usual, are clueless.

This tumor could have nothing to do with her lyme disease; so for now I wouldn't worry about all of this and its effects on the disease. Get this surgery overwith (and she will be fine) and when she is ready, start again on the lyme.

Bless you and your family and keep up with lymenet, we will be waiting to hear.

Good thoughts!!
Lymelady

Steroids, like all meds, have to be weighed in the risk/benefit ratio. I'm no expert, but it seems this is one time when the benefits might be essential. Your LLMDs will surely have an opinion on this.

As far as treatment for Lyme, doxy is far from the only drug that can be used. Not all antibiotics have the risk of increased intracranial pressure. It seems likely your LLMDs will be able to find something compatible with the treatment for the tumor, as long as herxing can be managed.

Don't take my word for it, but after she's done her surgery the llmd might want to look into testing for bart.

All the best, wishing you both well.

By the way, welcome to lymenet.

In other areas besides Lyme, doctors are making great strides, and do work miracles on a daily basis. It sounds like your mother is in the best of hands, and it also sounds like bringing in a trustworthy LLMD is a wise idea. Someone just sent me the highest recommendation for Dr. P, and if you can get him into the picture, it seems likely your situation will be even better under the circumstances.

Sorry it took a brain tumor to get you to post... but glad you decided to.

First.. I am sorry YOU are going through the wringer when it comes to Lyme. This is such a nasty thing to have to deal with... especially alone.

Please feel free now to post and come out and "play" with us...

OK?

About your mom...

I do hope the surgery will help her. I will say some extra prayers for her.

Tell her please that she has a big following here who cares how she is doing... and a loving daughter who is doing everthing possible to help.

By the way... You MIGHT not want to say "Tincup" said that... she may not understand what a Tincup is! HA!

From what I understand...

Many surgery patients.. usually before and after the surgery... are given antibiotics (IV's and/or orals). This seems to be somewhat standard for certain surgeries, Lyme or not.

I also understand ...

Some LLMD's prescribe antibiotics along with steroids if and when they are ever needed.

This, I believe, is to help prevent Lyme damage when the steroids are being given and when they are stopped.

From what I remember.. Dr. B said people can be given antibiotics (IV's) while on steroids to reduce the chance of additional harm.. but DON'T quote me on that. It was during a talk he gave several years ago... and my memory isn't worth "quoting".

Do you know what kind of tumor is in her brain? A lemon sized one sounds quite large. Is it fluid filled?

Here is some information on a type of tumor that can be found in a number of Lyme patients. It is called a Pseudotumor Cerebri.

Is it possible to have tissues or fluids from the tumor tested at Igenex or MDL labs for spirochetes, etc? The results may help with her with future Lyme treatment?

Someone who MIGHT be able to shed some light on this is Dr. L... in NY.

He has done some very detailed reports on brain involvement with Lyme.

It might be worth a call to his office.. by her doctor or you.. or your LLMD.

I will be hoping for the best for her.. and hoping YOU will not get so stressed that you make yourself sick!

I do worry about you!

Let me know if I can help... I will surely try.

EDIT HERE- I tried to post the link.. but it is not able to work here. If you need the source for this general info.. please let me know.

What is Pseudotumor Cerebri?

Pseudotumor cerebri, also called benign intracranial hypertension, literally means "false brain tumor." It is caused by increased pressure within the brain and is most common in women between the ages of 20 and 50.

Symptoms of pseudotumor cerebri, which include headache, nausea, vomiting, and pulsating intracranial noises, closely mimic symptoms of brain tumors, possibly because of the abnormal buildup of pressure within the brain.

Is there any treatment?

Treatment for pseudotumor cerebri is generally symptomatic. Pressure may be controlled by removing excess fluid with repeated spinal taps or by shunting.

Steroids may be prescribed to reduce swelling of brain tissue. Drugs to reduce cerebrospinal fluid production or hyperosmotic drugs may be used to reduce fluid buildup.

What is the prognosis?

Once the diagnosis is made and the disorder is treated, pseudotumor cerebri generally has
no serious consequences. If visual loss occurs, however, it may be permanent regardless of treatment. In some cases, pseudotumor cerebri recurs.

How sorry I am for your mom and you. This must be quite a shock. Your words reveal quite a special bond there between the two of you.

You are a wonderful daughter to be doing as much as you can for her. The fact that her illness, rather than your own, gave you the impetus to reach out says a lot about your caring. She is very blessed to have you and I'll bet she knows it.

I echo TinCup's advice to have as much "testing" done on the tumor as you can . Dr. P in Wilton, helped us very much in that department when we had several procedures done on our son. Dr. P gave us a list of specific things to be tested.

I do have to say though, that in our situation, the neurologist and infectious diseas specialist overseeing the procedures did do some exasperated sighing and eye-rolling by having suggestions made to them by another MD (ego) but we got the tests we wanted.

As mentioned by TC, using the right lab is critical; something we failed to do and regret.

I am wishing you nothing but the best outcome for your mom and you!

Please know you are both in my prayers.

How sorry I am for your mom and you. This must be quite a shock. Your words reveal quite a special bond there between the two of you.

You are a wonderful daughter to be doing as much as you can for her. The fact that her illness, rather than your own, gave you the impetus to reach out says a lot about your caring. She is very blessed to have you and I'll bet she knows it.

I echo TinCup's advice to have as much "testing" done on the tumor as you can . Dr. P in Wilton, helped us very much in that department when we had several procedures done on our son. Dr. P gave us a list of specific things to be tested.

I do have to say though, that in our situation, the neurologist and infectious diseas specialist overseeing the procedures did do some exasperated sighing and eye-rolling by having suggestions made to them by another MD (ego) but we got the tests we wanted.

As mentioned by TC, using the right lab is critical; something we failed to do and regret.

I am wishing you nothing but the best outcome for your mom and you!

Please know you are both in my prayers.

For now, we are putting all lyme treatment on hold to get her through the surgery, but plan to touch base with our LLMDs immediately after for opinions and guidance.