I don't feel like i can do this anymore

[allstars8]

I have severe pressure in the head after going on minocycline. I spoke to my doctor who said he thought it may be a herx and we tried multiple things (ibuprofen, benadryl with no relief). I have been to the ER twice now with no relief.

A ct scan was done which was normal, all medication i am given for headaches doesn't work....and the head pressure continues. I heard about possible intracranial hypertension and went to an opthalmologist. They did extensive eye testing which was all fine. They said that usually with the hypertension the optic nerves swell, but mine are fine.

However, i find it a hell of a coincidence that minocycline can cause this and it started after i started this medication. The opthalmologist recommended i go to a neurologist who i saw today. She said the same thing...that optic nerve swelling usually happens and so she wants to do an MRI and sent me away with yet more pills that do not relieve the pressure. I seriously feel at the end of my rope with this.

I currently live with my parents as my husband and i separated. I have insurance through our marriage until we divorce, but no income currently. I feel constantly spaced out as it is (this has always been one of the worst symptoms of mine). I felt like i could handle a part time job before this head pressure started, but it is so debilitating that i can barely function and i am in pain and i feel like no one listens to me.

It has been a week now since i stopped the medication and i have not had any relief. I also have no emotional support from my family. They get annoyed at me for not having a job and i don't think they truly understand this disease. I just don't know what to do next. I just want all the suffering to stop and i feel too far gone to ever feel better. I know many people probably won't be able to offer much help, but i just needed to vent

[JackieCalifornia]

The gut can (and should) be replenished by probiotics, so I learned from a Lyme doc.  

Acidophilus works fine, but has to be taken at specific times *away* from other food with a window on each side of the dosage.  

Another approach is to take a yeast-based probiotic (one I am familiar with is Florastor), which can be taken at any time without regard to meal time.  If you are yeast-sensitive, consult with your doc before taking yeast-based probiotics.

[FallingUp3]

Hey there. I'm a young female who recently discovered I had Lyme's, and I know exactly what you're going through. I have had those hard nights where I just have to cry it out because I feel no one around me understands how difficult it is to live with this. They try to give advice on how I should try to get on a proper sleeping schedule again, and everything about what might be causing my symptoms (mostly before I knew what I had), and what I can do to get a job. It can be overwhelming! Personally, the only way I have kept my head up is my faith in God, believing that He's knows what I'm going through and will take care of me.

Have you tried visiting a holistic doctor? That's who I've been seeing these last 3 weeks, and who discovered I had Lyme's. I've been only on supplements, because another issue I have in my gut was brought on by too many antibiotics. I've also been doing ozone therapy to get oxygen back to my blood, since my immune system has practically been at 0%. Hope this helps, and keep your chin up! You aren't alone in this.

[Murphgolf]

Saw what you are going through and understand. Much of what you mentioned are things I dealt with during Lyme process.

First, there is an answer, but it may take a while to find it. The key is not to give into the adversity and give up. I went through a divorce, headaches, weakness, dizziness, major skin problems, medications that made me feel worse, etc....Now doing much better after years of trying.

That doesn't mean it will take years for you, but diligence and a strong belief system, even when life is at its worst.

Anyone who doesn't have Lyme Disease rarely understands it's real. But the bottom line is YOU CAN GET BETTER. A naturopath changed my life after years, and now I am 70% better than I was. Hang in there and know there is some answer for what is happening.          

[Ephedra]

I had this with Doxycycline, felt like my brain was being crushed. Sorry if it's been said, there is something called benign intracranial hypertension. It doesn't usually show on testing. When I had this issue and asked my doctor about it, she asked like it wasn't something that would be problematic as it's it's benign. I stopped the Doxy for other reasons. Just give it some time, it should go away. If you have detoxification issues, it may take a little while. Shouldn't take over two weeks. I Can not recall how long it took for me, this was quite a while back.

[JackieCalifornia]

Good points, mojo -- it's not an issue I had, so it's something I don't think to mention.  Thank you.

[mojogal]

I would call the doctor and perhaps he can give you another medicine.

There is something called a herxheimer reaction ( sorry if you already mentioned it Jackie, I couldn't read everything you wrote due to eye sight) a herx for short is something lymies get which is a worsening of symptoms when killing the bugs.

I don't think we say it enough here on this board, my fault,  but it is so important to DETOX. That is how you get rid of all the toxins in your body. Drinking lemon water and soaking in an Epsom salt bath are simple solutions. There are supplement just for detoxing I have no bath so I do the lemon water along with a bunch of detox herbs.

[JackieCalifornia]

Send to:
Pediatrics. 2001 Aug;108(2):477-81.

     ===== Optic neuropathy in children with Lyme disease. =====

Rothermel H1, Hedges TR 3rd, Steere AC.

Involvement of the optic nerve, either because of inflammation or increased intracranial pressure, is a rare manifestation of Lyme disease. Of the 4 children reported here with optic nerve abnormalities, 2 had decreased vision months after disease onset attributable to optic neuritis, and 1 had headache and diplopia early in the infection because of increased intracranial pressure associated with Lyme meningitis.

In these 3 children, optic nerve involvement responded well to intravenous ceftriaxone therapy. The fourth child had headache and visual loss attributable to increased intracranial pressure and perhaps also to optic neuritis. Despite treatment with ceftriaxone and steroids, he had persistent increased intracranial pressure leading to permanent bilateral blindness.

Clinicians should be aware that neuro-ophthalmologic involvement of Lyme disease may have significant consequences. If increased intracranial pressure persists despite antibiotic therapy, measures must be taken quickly to reduce the pressure.

PMID:  11483820  [PubMed - indexed for MEDLINE]

[JackieCalifornia]

There were more articles like this, and are not hard to find through the magic of the internet.  Ask a family member or friend to help you search these out, and then take the information to an MD who would understand the meaning.

Above all:  don't give up!  I can tell you are fighter, because otherwise you wouldn't be posting here -- so YOU GO!  We are behind you.  Don't give up -- keep going until you get answers that make sense to you.

Keep us posted, okay?  We are here for you.  

[JackieCalifornia]

[continued from previous pane above]

Case report. A healthy 37-year-old male developed myalgias, fever, chills, sweats, fatigue, and headache associated with an erythematous rash with central clearing on his arm. The rash was consistent with erythema migrans and appeared 2 weeks after the patient had attended a pool party in Westchester County, New York, in July 2002. He was prescribed a 3-week course of doxycycline (100 mg twice daily) on day 3 of his illness. After 4 days of treatment, all symptoms and signs had resolved, except for his headache and fatigue, and the patient completed his course of therapy. Two weeks after completing his course of doxycycline treatment, he continued to have daily headaches that were only partially relieved by ibuprofen therapy. There were no visual complaints. Physical examination revealed a healthy-appearing thin male who was complaining of a headache. His temperature was 38.0°C, and his blood pressure was 130/80 mm Hg. There were no meningeal signs, focal neurologic deficits, or rashes. His total leukocyte count was 5600 cells/mm3, with 55% neutrophils. Results of liver and renal-function testing were normal. ELISA (MarDx Diagnostics) was used for detection of IgM and IgG antibodies to Borrelia burgdorferi and revealed elevated antibody levels. The presence of elevated antibody levels was confirmed by Western blot analysis. Antibodies to Ehrlichia species were not detected.

A lumbar puncture was performed after a fundoscopic evaluation revealed no papilledema. The opening CSF pressure could not be recorded because the CSF shot across the room. Testing revealed that the fluid had 1 lymphocyte/mm3 and normal glucose and protein levels. Culture of CSF was sterile. After the lumbar puncture was performed, there was an immediate improvement in the patient's headache. However, 4 days later, his headache recurred, and a second lumbar puncture was performed. The opening pressure was 28 mm Hg (normal pressure, 5–15 mm Hg), and he again had a positive clinical response to CSF removal. A third lumbar puncture performed 6 days later for treatment of a worsening headache revealed an opening pressure of 27 mm Hg. There were no cellular elements in the CSF, and protein and glucose levels remained normal. After the third lumbar puncture was performed, his headache and low-grade fever resolved and have not recurred during 18 months of follow-up. All lumbar punctures were performed in the lateral decubitus position. A cranial CT scan with contrast showed no pathologic lesions.

Discussion. The 6 criteria for the diagnosis of pseudotumor cerebri are as follows: (1) signs and (2) symptoms may only reflect generalized intracranial hypertension or papilledema, (3) documented raised intracranial pressure, (4) normal CSF composition, (5) normal findings of CT or MRI imaging studies, and (6) the identification of no other cause [8]. Although rare, pseudotumor cerebri without papilledema, as occurred in this patient, has been described and is not a requirement for the diagnosis of pseudotumor cerebri [9]. In this situation, sustained elevations in CSF pressure should be documented by performance of successive lumbar punctures or by prolonged intracranial pressure monitoring, if necessary [10].

The association between Lyme disease and pseudotumor cerebri was first described in 1985 in 2 children; before presentation, 1 child had received oral penicillin for 5 days 1 month earlier, and the other child had received no antibiotics [2]. Additional reports have confirmed this association in 6% of children with neurologic syndromes after treatment for Lyme disease and have noted the presence of pleocytosis and increased CSF protein levels in <50% of the patients [7].

Although pseudotumor cerebri can be caused by tetracycline [11] or minocycline therapy [12], especially in obese females, no cases of doxycycline-induced pseudotumor cerebri have been reported, although this complication may be a class effect. In addition, our patient's headache persisted for 2 weeks after doxycycline therapy was discontinued. He had no other risk factors for pseudotumor cerebri, such as endocrine or nutritional disorders, and was taking no medications, including retinoids and vitamin A.

Serial lumbar punctures were used as the sole therapy for this patient. Although the third and final lumbar puncture still revealed an elevated intracranial pressure, he required no further therapy and remained healthy.

To our knowledge, pseudotumor cerebri has not been described as a complication of Lyme disease in an adult. Persistant or recurrent headache in patients with Lyme disease should prompt the consideration of pseudotumor cerebri as a diagnosis.

    Received December 9, 2002.
    Accepted February 23, 2003.
    © 2003 by the Infectious Diseases Society of America

References [omitted here]
====================================================
ARTICLE -- "Neurological Complications of Lyme Disease"

printed at:  med.brown.edu/neurology/articles/sr21608.pdf

===================================================
ARTICLE -- Lyme Disease Presenting With Persistent Headache

By James M. Moses, MD, Robyn S. Riseberg, MD, Jonathan M. Mansbach, MD

    From the Department of Medicine, Children’s Hospital Boston, Harvard Medical School, Boston, Massachusetts

Increased intracranial pressure in patients with Lyme disease is an uncommon but reported finding. We discuss 2 patients from Lyme endemic areas who initially presented with headache, nausea, and vomiting and were eventually found to have increased intracranial pressure, a mild cerebrospinal fluid pleocytosis, and positive Lyme titers. It has been shown that increased intracranial pressure in association with neuroborreliosis can lead to blindness. In endemic areas, it is important for practitioners to consider Lyme disease when patients present with persistent headache, especially in those who have evidence of increased intracranial pressure.

http://www.healingwell.com/community/default.aspx?f=30&m=3290689
====================================================

[JackieCalifornia]

I just searched online for:

                    intracranial pressure lyme disease

and there are quite a few possibly useful links, including the following below, which are just the first few the search picked up.  

Ask family members or friends to help look through the internet to find these and look for names of MDs, hospitals and medical schools near enough for you to get to for a consultation.

While many of these links happen to be far from you, there have to be medical centers in Texas that could be useful.
=====================================
1 -- ARTICLE:  Lyme Disease Presenting With Persistent Headache

by James M. Moses, MD, Robyn S. Riseberg, MD, Jonathan M. Mansbach, MD

http://pediatrics.aappublications.org/content/112/6/e477.full

Author Affiliations:  From the Department of Medicine, Children’s Hospital Boston, Harvard Medical School, Boston, Massachusetts

Increased intracranial pressure in patients with Lyme disease is an uncommon but reported finding. We discuss 2 patients from Lyme endemic areas who initially presented with headache, nausea, and vomiting and were eventually found to have increased intracranial pressure, a mild cerebrospinal fluid pleocytosis, and positive Lyme titers. It has been shown that increased intracranial pressure in association with neuroborreliosis can lead to blindness.

In endemic areas, it is important for practitioners to consider Lyme disease when patients present with persistent headache, especially in those who have evidence of increased intracranial pressure.
===============================================
2 -- ARTICLE:  Lyme Disease Complicated with Pseudotumor Cerebri

    By Jill A. Nord and Dennis Karter

Section of Infectious Diseases, Department of Medicine, Saint Vincent's Hospital-Manhattan, New York Medical College, Valhalla, New York

Reprints or correspondence: Dr. Jill A. Nord, St. Vincent's Hospital-Manhattan, Section of Infectious Diseases, 153 W. 11th St., New York, NY 10011 (***@****).

To our knowledge, pseudotumor cerebri as a complication of Lyme disease has been described only in children. We report the first case of an adult with pseudotumor cerebri due to Lyme disease and the use of serial lumbar punctures as the sole therapy.

Neurologic involvement occurs in 15% of adults with early-stage, untreated Lyme disease [1]. In the pediatric population, increased intracranial pressure causing papilledema (pseudotumor cerebri) has been described [2–7]. To our knowledge, there have been no reports of pseudotumor cerebri in adults with Lyme disease. We report the development of pseudotumor cerebri, which was treated with serial lumbar punctures for the control of symptoms, in a 37-year-old male after he had completed doxycycline therapy for confirmed Lyme disease.

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