Okay, so hear's the deal...

[MeaganM]

I am new at this... have had it for at least six years but didn't find out what it was until 2 months ago. Now I am desperate. I have written letters to everyone I can think of begging for help for my family. I know that some people on here have gotten better and I've tried very hard to research the right things to do and have started implementing some of them but... I feel like I'm lost in a field with no end in sight. Finding answers is like finding a needle in a haystack.

Because I cannot work and my husband just retired from the military, we are limited in funds and our money is dwindling with all of these herbal remedies and recommendations that help a little but not enough. I have had a Homeopathic Doctor agree to give me the pharmaceuticals some use with Morgellons but after the reaction I had with just the Doxy, I'm scared. Plus she has to order them from elsewhere and it's very expensive. I'm too chicken to try the horse paste and stuff from a feed store.

I would like to build my immune system up and detox first but there are so many products out there that I don't even know where to begin. Most people list a whole number of herbs but I know nothing about them or where to find them. I was hoping for one pill to detox and one pill to boost my immune system. Plus a change in diet. Is there anything like that out there?

I have read about people who have crawling sensations (bugs) on their skin more often then those who feel things like worms under the skin. The reason why I am going to see Dr. Amin is because I am praying that he can tell me if it is worms. It sure acts like it and looks like it and even wiggles. I have them in my sinuses, eyes and throat as well. But, I haven't been able to find one case where anyone has actually had worms under their skin. So, to give me piece of mind, I am going to pay this doctor $100 every half hour just to tell me that it's my teeth and beg him to test me for parasites which will probably cost our life savings. I don't know what else to do. If I knew where else to go or knew for sure that other people had white ringworm looking things that vibrate under their skin and what looks like gel-sacs with eggs in their sputum and sinuses that turned out not to be worms, then maybe I could handle this a little better and patiently work my body back to being healthy.

I don't have lesions, just holes in my legs and I don't have itching like most describe except for my scalp. I have read others symptoms with throat issues and sinus issues but it sounds like everyday sinus and throat issue not the horrendous choking and crap that I am experiencing. If I knew that was normal, I might be able to handle it a little better. But it feels like things are crawling up my esophagus or draining down the back of my sinuses and sticking in my throat. It feels like a big a** worm clinging to my throat and won't let go.

I would do anything to get answers. I have searched and searched and cannot seem to find what I'm looking for. I can handle the fibers and the holes and the biting. What I cannot handle is the feeling that this is a parasitic worm under my skin (and possibly my heart) that I can see move and spit out the fibers. My mind cannot wrap around this and it's become a road block to my recovery. I also have small white circles at each of my fingertips that swell up and spit out fibers. Those white circles moved from my arms to my fingertips after I took the Albenza. They did the same thing from my face to my nose. It was very painful. This is what happens anytime I take something they do not like.

Is this what happens in the beginning when everyone says that they went through it during detox? Do the things move through your skin and stretch and pull on the muscles and nerves and exit the ears, nose and throat? Is this what you mean when you say it was bad in the beginning but it's better now? Because I can't seem to find those descriptions and it's what's wrecking havoc on my mind. I can't fathom anyone being able to survive that considering how painful it was. If it is that then how long did it last before relief?

I think it's sad that there are people out there trying to make a buck off this horrendous disease while we sit here and suffer. Is there anyone out there that can help my family without making us homeless?

Any comments or suggestions would be greatly appreciated. I just want my life back!

[tcmgpt13]

If you are retired military don't you have Tricare? Drugs co-pay is minimal with that coverage. You should be able to pay very little for your other drugs too at the drugstore, especially if generic. The tricare mail order pharmacy costs even less--90 days for the price of a 30 day co-pay at the local pharmacy. Doesn't Tucson have some military bases? Drugs that they do carry will be free if you take in your prescription (no antiparisiticals though you will have to use the local pharmacy, but tricare covers it). It's not that expensive to use regular medicine with military coverage. It's when you use herbs that it's out of pocket. Kbubba has a thread under the treatment section--an old mod here who went into remission using mostly drugs and some natural products. Not sure everything she posted is still on the forum, but some posts remain. You might check. Also a poster named Jason from UK used the vanderbilt protocol and posted about it on the forum. You might look up his posts. Anyway, there's more than one way to solve problems.

[MeToo]

Bases in AZ:
Military Bases in Arizona AZ - Hotels, Lodging, Inns

Davis-Monthan AFB's in Tuscon.

[MeaganM]

Thanks for the replies. DM doesn't have a medical facility for civilians only a small clinic for active duty. I do believe anyone can get prescriptions there but really the prescriptions are only a few dollars. The doctor I'm talking about wants to give me praziquantel, mebendezole and ivermectin plus antibiotics (trimethoprim, doxycline) and antifungals (diflucan and metranidazole). She said some of these are not sold in the U.S. and I'm not sure the insurance company would approve all of these at once. As stated before, I'm also afraid to take them all and don't think my body or heart can handle it.

Does anyone know of a good detox and immune booster program that doesn't include buying tons of different herbs? I have a hard time taking pills since I cannot swallow and would like to start detoxing right away. Sprouts and World Market have kits but I'm not sure which is the best.

I looked into C pneumoniae and that looks like something I may have as well. I just need to find out where they test for it. Can I get my doctor to test for it or is it something that requires special testing? Also, I know that most people with M get testing done at some lab for Lyme, heavy metals, etc... Can someone tell me where and what kind of tests I should do?

I know it's a lot of questions and I appreciate all the help.

Meagan

[tcmgpt13]

You know that list of ID doctors I took the time to tell you about in one of my posts? Well, they are often able to do at least some of the testing you need. Also more alternative type physicians may do this, but they may or may not be covered by your insurance. You will need to do some leg work to find the help you need, but keep looking and asking around in your local area.

Some of the anti-parasiticals are available in the US, ivermectin for sure. Mebendazole I believe is too. And of course albendazole. The anti-fungals are too. Just call your Walgreens or CVS and ask the pharmacist for clarification of what is available in the US by using a script. I cannot imagine a doctor would prescribe all those anti-parasiticals to be used at one time.

You know, I keep wondering why you say that you cannot afford help when it's obvious now that a lot of regular in network pharmacies and doctors will be covered by your current insurance. If money is an issue then you may have to forgo help for now from alternative practitioners who are not covered by your insurance. If you have a good doctor and are under their care you should be able to address your most salient concerns about how to approach taking some of these drugs. Also you should report any adverse side effects. Did you ever call the doctor who had prescribed this drug when you had such a frightening experience to report to him what happened? If nothing else such an adverse reaction should be reported to the FDA by your doctor.

Your insurance probably covers the Igenex testing which has a good rep for detecting lyme and some its co-infections. Standard lyme testing often misses lyme. You can look up Igenex on MDR and find more info here or you can go directly to their website and find even more.

Originally Posted by MeaganM

Thanks for the replies. DM doesn't have a medical facility for civilians only a small clinic for active duty. I do believe anyone can get prescriptions there but really the prescriptions are only a few dollars. The doctor I'm talking about wants to give me praziquantel, mebendezole and ivermectin plus antibiotics (trimethoprim, doxycline) and antifungals (diflucan and metranidazole). She said some of these are not sold in the U.S. and I'm not sure the insurance company would approve all of these at once. As stated before, I'm also afraid to take them all and don't think my body or heart can handle it.

Does anyone know of a good detox and immune booster program that doesn't include buying tons of different herbs? I have a hard time taking pills since I cannot swallow and would like to start detoxing right away. Sprouts and World Market have kits but I'm not sure which is the best.

I looked into C pneumoniae and that looks like something I may have as well. I just need to find out where they test for it. Can I get my doctor to test for it or is it something that requires special testing? Also, I know that most people with M get testing done at some lab for Lyme, heavy metals, etc... Can someone tell me where and what kind of tests I should do?

I know it's a lot of questions and I appreciate all the help.

Meagan

[sammy]

Tc. I cann see the route Iam going now. I will get tests done under my Insurance if I possibly can the Ignex test for one and some of the fungus.test. Ginger savley charges 600 for office visit 900 for blood work and prescriptions around 900 to one thousand. Thats a chunk of change for many. So I am persusing some different doctors now too get some tests done. Thanks for all your in put its so weird the way insurance works. many times the doctors hands are tied. sammy

[tcmgpt13]

Hi sammy, I agree it's always good to check to see if a test will be covered by your insurance. There are some insurance companies which do cover that testing as well as some who do not. Also calling different doctors' offices to find out if they will treat certain conditions or use certain tests before going to them is a good idea. It may take some searching and persistence and time, but often you will find help for at least part of the puzzle of M. It may not cure M but symptoms may lessen. I know you are aware of this as you have been great about sharing your experiences with medications which have helped some of your symptoms.

I surely hope you can find some new avenues to learn more about your illness and will be able to quiet even more of your symptoms. Here's to continuing success to all of us who are on the path to wellness.

tcm

Originally Posted by sammy

Tc. I cann see the route Iam going now. I will get tests done under my Insurance if I possibly can the Ignex test for one and some of the fungus.test. Ginger savley charges 600 for office visit 900 for blood work and prescriptions around 900 to one thousand. Thats a chunk of change for many. So I am persusing some different doctors now too get some tests done. Thanks for all your in put its so weird the way insurance works. many times the doctors hands are tied. sammy

[MeaganM]

I don't know, maybe I'm not being clear... the brain fog is a problem. I have been to many, many conventional doctors using my insurance and have been diagnosed with Chronic Fatigue Syndrome and Postural Orthostatic Tachycardia. They do not know what is causing it or what else to do for me except drugs. I now know that it's Morgellons causing my problems but because they do not believe me and diagnosed me with DOP, I cannot go the conventional route as far as treating or testing. I will see if I can get her to test me for Lyme through that lab you mentioned but I have been tested before with a regular blood test and it was negative so she may not agree. I am getting a referral to a GI doctor for the throat issues but as everyone says, you cannot mention anything about Morgellons or parasites, etc...

My insurance is an HMO and I need referrals for everything so using it to help me with this is almost impossible. I paid out of pocket for the Homeopathic Doctor who wants to prescribe all those meds and who also gave me the Doxy. I didn't have an allergic reaction to the Doxy. It caused the Morgellons to go crazy and seem to get worst. This is not something I can tell my regular doctor apparently so I stopped taking it and now do not know what to do. I fear taking all the other meds will kill me so I decided to go a different route for now (but I am getting desperate). It would be nice to be under a doctor's supervision especially since I have heart issues.

If I could find a doctor who takes my insurance and treats Morgellons, then I could probably talk my doctor into giving me a referral but I can't seem to find one. I did get your list and thank you for that. I plan to call every doctor tomorrow and see if they treat Morgellons. Until then, I am so sick, I can barely get out of bed. I am researching and researching and looking through the archives but it's an endless endeavor; therefore, I was hoping some of the older members here could help.

Thank you for all your links and advice. I have been making notes and plan to put some things into action tomorrow.

[tcmgpt13]

I would definitely not mention Morgellons or lesions (if any) to doctors before an appointment nor even discuss that when speaking to the receptionists or nurses in their offices. Maybe ask about the lyme and the igenex test. If you have any lesions then show those to the doctor when you see him/her, but just look quizzical about what they are. Do not discuss parasites, especially at first. That's what I did with the ID doctor I saw which led him to test me for some viral infections. I tested for two and treatment with acyclovir dried up the viral induced infections and I even got fewer of the lesions I felt had parasitic involvement. I just could not stay on that medication any longer than I had at that time. I suppose I should have gone back to him as I think that he would have tested me for other possible infections but by that time I was back to using TCM for treatment.

Over time I could and did show my ID doctor the obvious parasite tracks outlining the lesions my herbalist and I had treated with black salve. They were no longer active lesions, but the remaining track holes showed him what had happened in the past. That's when he gave me the ivermectin. I think you just have to play this whole illness by ear as far as timing what you do. Once a doctor gets to know you and knows you are not crazy then s/he is more likely to believe what you say, as long as you don't get too insistent about anything and let them do their doctor stuff.

One thing, since you live in an area which has some inroads as far as Chagas (protozoal parasite) I would try to get a test for that. Chagas can affect the heart and may cause rapid heart rate. This is from a POTS site discussing possible causes of this problem (chronic fatigue often goes hand in hand with this). Chagas is another name for one strain of leishmaniasis. Since you have some background as far as being around military people keep in mind some of them are bringing back the old World variety of this illness (different strains). With Chagas there is more than just one way to contract it and it's not just with the bite of an insect vector. Even some bedbugs (those from tropical areas) are being implicated. Plus it can be through exposure to infected feces and other means as well. It's possible all types of leishmaniasis are spread in more than one way. Not trying to scare you but this is one thing one M person was diagnosed with:

Parasites can transmit diseases, such as Chagas, that can cause POTS symptoms. Some patients report developing POTS after having Lyme disease.

Viruses can also be an issue for this problem. And some of us have been diagnosed with active cases of different viral problems:

Viruses are thought to be the provoking factor in approximately 50% of POTS patients (Low & Schondorf, 1997, p. 279). There are reports of dysautonomia occurring after the Epstein-Barr virus (Itoh, Oishi, Ohnishi, Murai & Imawatari, 1993). Viruses may directly affect the autonomic nervous system or lead to an immune pathogenesis (Grubb, 2000). Roughly one-half of post-viral POTS patients will make a good practical recovery over a 2-5 year period (Grubb, Kanjwal & Kosinski, 2006).

What causes POTS? (lots of info about other medical issues which might be involved with POTS)

Originally Posted by MeaganM

I don't know, maybe I'm not being clear... the brain fog is a problem. I have been to many, many conventional doctors using my insurance and have been diagnosed with Chronic Fatigue Syndrome and Postural Orthostatic Tachycardia. They do not know what is causing it or what else to do for me except drugs. I now know that it's Morgellons causing my problems but because they do not believe me and diagnosed me with DOP, I cannot go the conventional route as far as treating or testing. I will see if I can get her to test me for Lyme through that lab you mentioned but I have been tested before with a regular blood test and it was negative so she may not agree. I am getting a referral to a GI doctor for the throat issues but as everyone says, you cannot mention anything about Morgellons or parasites, etc...

My insurance is an HMO and I need referrals for everything so using it to help me with this is almost impossible. I paid out of pocket for the Homeopathic Doctor who wants to prescribe all those meds and who also gave me the Doxy. I didn't have an allergic reaction to the Doxy. It caused the Morgellons to go crazy and seem to get worst. This is not something I can tell my regular doctor apparently so I stopped taking it and now do not know what to do. I fear taking all the other meds will kill me so I decided to go a different route for now (but I am getting desperate). It would be nice to be under a doctor's supervision especially since I have heart issues.

If I could find a doctor who takes my insurance and treats Morgellons, then I could probably talk my doctor into giving me a referral but I can't seem to find one. I did get your list and thank you for that. I plan to call every doctor tomorrow and see if they treat Morgellons. Until then, I am so sick, I can barely get out of bed. I am researching and researching and looking through the archives but it's an endless endeavor; therefore, I was hoping some of the older members here could help.

Thank you for all your links and advice. I have been making notes and plan to put some things into action tomorrow.

[sammy]

tcm. Monday I have a four hour appt with a allergy/ immnue doctor who is the wife of my eye doctor. Not sure what tests they will run but skin is one I know of plus I have fluid in my knee so mri later in the day on that plus they want a test for lyme. if it comes back neg they will run the test overnight western blot. so at least I need too weed some things out. sammy