I was misDX'd with possible MS but finally found an LLMD and diagnosed with Lyme with CDC positive IGeneX western blot (some double and triple positives). I have been infected between 2-3 years.

It is getting hard to continue to feel this is a good thing.

Oddly, my best relief in months was following a lumbar puncture...a blessed two weeks without headaches.

My old standby Relpax, for migraines, works -- JUST - to take the edge off. However, a scrip of Relpax is about 8 pills. This stuff is like gold. My insurance company has twin cows when I ask for a refill.

I know steroids are bad news for Lymies. But I am sure I have brain swelling. David, our resident brain expert, is it ever advisable for neuroborreliosis patients who cannot get in front their headache pain?

I hate sedating-type pain meds. YUCK, YUCK, YUCK. Show me a Vicodin and I'll go throw up in about 20 minutes.

I take Topamax 150/mg nightly.

Maybe this is as my LLMD warned, the "worsening," as we switched from Doxy to Axomicillin 3000/mg a day + 1500 mg Probenicid. Maybe the die-off is killing so many spirochetes it's creating inflammation/pressure and subsequent headache from hell. So maybe it's a good thing. But it sure doesn't feel like it.

Someone, quick. Tell me it's a good thing so I can keep doing this until I see my LLMD in a couple more weeks. Whereupon I have a feeling it will be PICC line time... :-(

I had brain swelling once and my LLMD gave me a different abx. I can't remember which one it was, darn it!

Have you checked the side effects of probenecid? Someone mentioned the side effects one day.

Hope someone will have some ideas for you!

quote:

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Originally posted by Lymetoo:
Have you called your LLMD about this recently? I know "pab"'s sons have this problem...where only the spinal tap helped.

I had brain swelling once and my LLMD gave me a different abx. I can't remember which one it was, darn it!

Have you checked the side effects of probenecid? Someone mentioned the side effects one day.

Hope someone will have some ideas for you!

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Thanks, Lyme Tutu.. Yes, I called...they say it's a "good thing" and I guess are taking my worsening for a sign the new ABX are working.

For the headaches they wanted me to try the Diamox...they say it relieves intercranial pressure in about 50% of their neuroborreliosis patients, so worth a try.

I haven't noticed any side effects of the Probenecid so far, tho it seems others haven't tolerated it well, i.e., liver side effects and such. My tummy seems relieved to have it and the Amoxicillin, at least compared to the Doxy, which I despised like CRAZY!

Michelle M

I should probably thank my headaches. I would otherwise never have known I had Lyme. The headaches became so severe over a year and a half or so that I finally went to the doctor (rare for me), secretly convinced I was dying of a brain tumor. Which led to the MRI.

Hot showers/baths seem to escalate the pain.

My MRI mentions possible vasculitis and "encephalomalacia" (?) along with multiple subcortical white matter lesions of "both hemispheres" consistent with Lyme disease ...

Some part of me worries that even when the bugs are dead, the pain will not stop.

Though really, I am grateful and blessed to be spared from pain anywhere else in my body. If my head would stop shrieking, I could go climb Mt. Lassen. :-)

Michelle M

Sorry you are having the head pain. Hubby has it and is totally debilitated by it. The LLMD's he has seen have nothing to offer for the pain. Two years of this agonizing symptom. Makes all the other stuff seem minor.

I can't offer any assistance, just the knowledge that someone else is living with it, well, not "living" exactly. He is unable to drive, read, and basically function on most days due to the head pressure. 2 years out of work and no end in sight.

I went through a very bad period with the headaches this past winter. Topamax is what finally got it under control. However, I find I have to up the dose every now and then, when a new problem comes along.

I'm not quite up to the dose you are using, so don't know if you can still increase your dose, but it is something to check into. It usually take about three to four days at a new level to get some improvement.

Hope this is helpful for you. The headaches can be pretty awful. The other thing that seems to be important is taking good doses of magnesium. When I was doing IV, Iv magnesium was the most helpful.

Good luck.

Your symptoms sound pretty much the same as my 24 year old daughter's. Her LLMD, who is

over your way put her on Prednizone just yesterday for a week. I know that Lymies

are not supposed to take steroids but he wants to see if this will perhaps relieve

the pressure in her head and behind her eyes. It is also affecting her left ear.

She can't seem to hear out of it. If some of the pressure isn't relieved by Sunday night

he wants her in for an MRI. I used to have VERY horrible migraines so I can sure relate

to your pain, although I am sure is it different. My heart goes out to all of

you. The Diamox doesn't seem to touch it at all, but then, I think how bad would it "really" be if she wasn't on it????

Hugs to you all,

------------------
ICEY

IDAHO LYME SUPPORT GROUP
[email protected]

quote:

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Originally posted by ICEiam:

The Diamox doesn't seem to touch it at all, but then, I think how bad would it "really" be if she wasn't on it????

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That's funny, I used to wonder the same thing about the Topamax. Seemed like it wasn't helping that much.

Then I went camping one weekend and forgot to take it.

"Pssshaw," I thought. "Probably won't make much difference."

Woke up with head exploding with pain.

Took a Relpax, drove home, got my Topamax, drove back.

Won't be doing THAT again.

Hope your daughter's MRI is clear. It will be good to have a look-see in there. I'm beginning to think a short course of prednisone sounds darned good.

Michelle

quote:

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Originally posted by mimi:
My mom was dx. with MS about 8 years ago and my symptoms were just like hers and i was scared to death of what might happen to me.

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Has your mom been checked for Lyme and Babesia?

quote:

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Originally posted by WIZARD:
Michelle,

Sorry you are having the head pain. Hubby has it and is totally debilitated by it. The LLMD's he has seen have nothing to offer for the pain. Two years of this agonizing symptom. Makes all the other stuff seem minor.

I can't offer any assistance, just the knowledge that someone else is living with it, well, not "living" exactly. He is unable to drive, read, and basically function on most days due to the head pressure. 2 years out of work and no end in sight.

Wishing all of us healing, one day soon.
Wizard

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Wizard, I'm so sorry. That's what is so scary. I work full time, sole support of daughter. Increasingly, my work overwhelms me. Mult-tasking is beyond me. Cannot grasp new info. Blank looks common. Write myself many notes, lucky to remember later what they mean.

Are no pain meds helpful to your hubby? None of the vasodilators, i.e., Imitrex? Relpax? In severe enough cases, even steroids are considered, I thought...as they reduce inflammation.

Best of luck with hubby, hope he finds relief soon.

Michelle

This was a tapered dose, starting out high and tapering down to 1 mg.
It worked. The ear cleared up. My headaches went away for that week, and my aches and pains did too.

That was before I knew I had Lyme.

The latest thing I've been doing is taking Wobenzym and Serrapeptase, systemic enzymes that reduce inflammation and reduce the "stickiness" of the blood cells.

I think I may have hypercoagulation; symptoms include headache and brain fog.

I must admit, my headaches have reduced in intensity since I've been taking these supplements.
I now wake up without a headache, which is a welcome change.

I am self-treating, and I am not on antibiotics, so consider this just an anecdotal report. I also take Saventero.

You might want to read about hypercoagulation.

Carol

Jake is 19 and his headache is normally an 8 or 9 (on a 1-10 scale). He does have days when it is a 10+. He has been to the ER and did not get any relief.

Jordan is 14 and his headache is normally a 6 or 7. His headache gets worse at times.

Like Lymetoo said, lumbar punctures are the only thing that reduces the headache. Jordan had his last LP on 2/4 and his headache has stayed down (from a 10 to a 6). Jake's last LP was in March and he only had 1-2 weeks with a reduced headache.

Both have tried many meds. Tramadol/Tylenol will usually help a little. They have tried many migraine meds, Neurontin, Diamox and more.

Diamox didn't help them. We are now going to a neurosurgeon and he said they weren't on a high enough doses.

Jordan had a cerebral angiogram, venogram and had his cerebral venous pressure checked on June 1st. The doctor that did the procedure said his cerebral venous pressure is high. This is an indicator of increased intracranial pressure.

Jordan has a follow-up appointment with the neurosurgeon on July 26th to get all the details on the angiogram/venogram. He mentioned that Jordan would be a good candidate for a shunt. The shunt would keep the fluid at a normal level.

Michelle M - Do you know what your opening pressure was when you had a lumbar puncture? Jordan's has always been high.

Before Jordan's last LP, he had pulsing in his ear in beat with his heart. It was so bad that he couldn't sleep. Within hours after the LP the pulsing was gone.

Doxy is one of the meds that can increase intracranial pressure.

Increased intracranial pressure is also called pseudo-tumor cerebri. This link lists the causes of PTC:

www.fpnotebook.com/NEU155.htm

I honestly wish I could tell you what helped. For me, that symptom went away the fifth month into my being sick. It took another 4 months and many many more symptoms added before I found out it was all lyme.

From time to time, I still get them back, but not like I had in the beginning.

My head felt like it was going to fall out my brain, I had that much pressure.

I used chirpractors, accupuncture, olive leaf extract, SeaSilver, acidophillus and something called MediClear by thorne research. Within a month (the fifth month of this , non stop) it left and never came back...

Except time to time. Now the only thing that helps it is Rifampin. I just tested PCR positive for bartonella. Joyous.

YOU WILL beat this. You will.

What helped:

Zomig 2.5 or 5.0 mg during attack

Ice packs on my face

1 year of antibiotics, still on

Customized Nightguard to relieve tension in jaw

NUCCA Chiropractic (gentle, non-thrusting technique)

Mine are 100% better since February when I had dental surgery to remove infected tissue in my jaw. I had a long-standing infection from a root canal. Get some digital X-rays of your jaw!!

Also, a Dr. Chris Hussar in Reno, NV feels many dental problems are related to Lyme disease.

quote:

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Originally posted by pab:

Michelle M - Do you know what your opening pressure was when you had a lumbar puncture? Jordan's has always been high.

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Thanks, everyone, for the great suggestions. I'm hanging in there. Eventually it's got to let up.

PAB, that's amazing to have two sons with that problem. Poor fellows! I've read about people who are only relieved (like me and your sons) by lumbar puncture. Kind of a hellish procedure to relieve a migraine! I know it is brain related. My heartbeat pulses in my eye.

I do not know my opening pressure but suspect it was high.

I had elevated protein in my lumbar puncture; otherwise not too remarkable.

Will see what LLMD suggests.

Thanks much to all.

I am not really a brain expert, just a guy who has read a bit. I just have a bit more background in diagnostic imaging than most people since I have done R+D in this area for 25 years. I think someone like duramater is more of an expert on the physical brain.

That being said, I have seen european papers (mainly polish) that have indicated that steriods have been used on acute cases of neuro lyme. If you see the MRI's you will see why as the brain is badly inflamed. I have also read that steriods are also given from time to time along with ABX in Lyme in an effort to reduce the pyrogenic reaction (aka "herx"). I have no knowlegde of the types or dosage that would be used, but it has apparently been done.

Rather than try to go with steriods why don;t you back off the dose a bit. That way you will see if it is drug related or symptom flare related. (or maybe both) a few days of the abx won't hurt (as far as I know). Some drugs can give you one real bad headache for a while (I have experience with Flagyl doing this)

You mentioned that this is your second month of treatment. Is the start or end of the seocnd month. If it is the start or end it is basically expected that you will get a very bad flairup. It should pass in a few days if it is a flare.

If you have hydrocephalus, this is noramlly visible on the MRI since the ventricles look larger than nomal, also nausia is common. In some cases, there may be atypical hydrocephalus or a low grade that will difficult to see on the MRI or CT. Though the opening pressure as someone had mentioned would show this.

It is interesting that you said that the LP brought relief for such a long period of time. This is very odd as if the pressure was being relieved after the needle removal by a leak, you would have gotten the LP headache, which is quite different but exquisitly painful, (some have called it the worlds worst headache - this is not true, the Lyme treatmetn headache that I had was a lot worse...I had both so I can compare the two). CSF is being produced all the time with so any removed liquid is quickly replaced. If you drink more water (or waht ever), more CSF is produced (I think). If you drink more does it get worse? I will think about this as it is quite interesting to see such an effect. Did the headache reduce/change or go away totally. Did it come back abruptly or gradually?

Back to the Lyme treatment related headache. I also had a VERY BAD headache, during the first round of treatment. It was very bad, in fact felt like the head was going to explode. I tried a number of things. Nothing worked, sorry to say. It did however clear up in about 11 days after which the Lymph nodes on the my head where so sore that I could not even put my head on a pillow. that lasted for a few days also. After it all cleaed up I actually went sking, after having to walk with a can just a few weeks earlier. The recovery was extreme.

I am pretty sure that at that time it was the pyrogens (bacteria fragment) that cuased the problem. An interesting note is that children with bacterial menegitis can actually get worse and die if given strong ABX due to the large number of bacteria destroyed during treatment. I believe (but am not sure) that steriods are used during those treatments for children.

It is also interesting that you would get such a strong reaction from amox. It does get to the brain but not as good as something like ceftriaxone (which I had) maybe this is why the delay in response. (My headache started on about day 7 of treatment). Do you have any other symptoms that have flaired up?

Do you have a headache all over or just in one spot.

Does it hurt to bend you neck forward. This I believe is a classic sign of brain swelling.

Finally, in general when I get a round of really bad symtoms that are abnorml as compaed to past history, I modulate the drug dosage or even stop for about 3 days or so to see what affect it has. If it a purely drug effect then it will clear up fairly quickly as the level of drug goes down. If it is a symtom falir it will continue and follow the flare recovery pattern, that in my case takes a few days. If it is any consolation, I have seen that in general , the worse the symtoms flare, the better the level of recovery that occur once the fare is over. This is what keeps me going during the really bad cycles.

Let me know if there is anything else I can provide.

>>>Is the start or end of the seocnd month. If it is the start or end it is basically expected that you will get a very bad flairup.

I started Amoxy 3000/mg on July 1 and the headaches from hell started pretty much immediately.

Interestingly, I DID get the post-LP headache for four days. Excruciating. My neck turned to concrete. Lying down helped. After four days it let up. Then I was remarkably better. Shortly afterward I was DX'd via IGeneX and began Doxy. Whereupon the headaches began anew. I lost my lumbar puncture "protection."

I do not look down as my head slams too hard, so reach down for things while keeping my head upright (looks pretty weird but works).

Headache is just in the front - forehead and behind the eyes.

As to "other symptoms" flaring up, my other symptoms are all pretty mild - some bilateral arm stuff, mostly I'm just a neuro person. My memory is mush, low energy, not much else to measure.

I wouldn't wish this headache on anyone but it's encouraging others have had it and come out the other side.

Relpax DOES help, and it's a vasodilator, which encourages me to believe that not enough blood is getting into my brain. I just know I can't take it every day.

Thanks for your help, David! I really appreciate it.